ICU

Dear Friends,

A short post to let you know that Sharon was admitted to ICU at UTMC in Knoxville, TN on Sunday, June 14th.

Please pray! Thanks!

Update and Request

Hello, everyone!

I'm slowly on the mend. The meds keeps me tired and sleepy and lot, so my "coherent" time per day is somewhat limited -- okay, QUITE limited per day. That's why I have not blogged more often. And it's not a great deal of fun for my family or my nurses, either right now. Tonight, it took TWO nurses TWO hours to flush my chemo port, change my catheter, clean my body, pack and dress my wound, and get me situated in bed. The family rotates staying up with me, taking care of me, and taking care of our still very-busy household.

Anyway, I am fighting a bed sore, and would certainly appreciate your prayers. The ONLY way this is done is by keeping pressure OFF the butt, which is a real challenge when you are paralyzed and, well, stuck ON your butt.

So -- you can see why I haven't been writing to you. Life is really down to the bare basics right now. Breathe, sleep, medicate. Not very interesting, I'm afraid. Not-so-fun days, but days that must needs come ...

I am coming back. It just takes time, and patience, and energy that I haven't found yet.

Love to all from the bottom of my heart!

:-) Sharon

May We Present ...

Our newest High School Graduate!

Michael Eric Leming
Morristown-Hamblen High School West
Class of 2009

Congratulations, Son!

We love you very, very much!

:-) Sharon

Sneaking a Peek at the World Outside Myself Again

Well, hello, everyone! I am still heavily sedated and easily confused, but I am definitely feeling a little better than the last time I posted. My lungs are clearer -- and easier TO clear, without so much of the drowning-in-phlegm feeling that makes pneumonia so miserable. The breathing treatments are still my close friend, and I find comfort in the oxygen pump that rumbles like a helicopter at my feet.

Even if I was completely coherent, there is simply no way to size up in words the depth, breadth, and length of where I have been physically and emotionally over the past couple of weeks. The physical agony, combined with the swarms of well-meaning, yet somehow overly emotionally charged doctors and interns pronouncing my fate in swift decisions and pundits about my fate. Heavy, heavy stuff.

It became obvious that the surgery wasn't a good idea right now due to the lung complications, and we were doing okay with that -- but the informational onslaught of the rest was just overwhelming. Don and I were confused, terrified, and just simply thrown into a tailspin by all of it.

What does it mean for me, really? We still don't know. I do know, of course, that my lungs are healing because I am stronger and can breathe better. That's wonderful. I also know that I am paralyzed now until/unless there is intervention done to restore my neurological function. Do I cut my losses there, and learn to live with it? Or do we make it our immediate goal to get me well enough to try to salvage it again?

And, of course, it all comes back to the cancer itself. It IS still there. It CAN still grow or invade or further weaken me. What's it doing in there? It can never be trusted to just go dormant. It loves to kick when I am down.

Hard, heavy stuff. But I want all of you to know that I did not come home to lay down and die. I came home to live -- it's just been a little harder this time to sort out exactly what that means. So we take it, day by day, moment by moment for a while ... but I am here, and I am happy, and I love all of you very, very much!

:-) Sharon

Where Am I Now?

Since I am very weak right now, and things have changed fast and furiously over the past days and weeks, and I am going to stick to the basics. I am working on a longer blog entry that will explain how things shifted so quickly, but I just don't have the energy to finish it right now. For now, here are the raw facts:

• HOME: I came home by ambulance from Vanderbilt on Tuesday afternoon, May 12th.
• CURRENT FOCUS: My lungs have to rest and recover before ANY additional treatment can be considered.
• PARALYZED, BUT NO SURGERY: I now have no use at all of my lower body below the tumor line (T7 - T9). Surgery could possibly restore my neurological function again, but it's not even a consideration at this point. My lungs are too weak.
• WHAT HAPPENS NEXT: Home Health and Hospice is helping me rest comfortably at this time. This does NOT mean that I have given up. This simply means that right now there is nothing that can be done until/unless my lungs can heal from the pneumonia and weakness.

With much love and respect to all, I want to reiterate that this is not the time for a battle cry. I am resting, healing, and savoring the small joys of being home. I will rally again, when the time is right.

:-) Sharon

NO SURGERY TOMORROW

VERY, VERY LATEST: NO SURGERY TOMORROW. TOO MUCH RISK TO LUNGS.

Radiation oncs may have some options to help me breathe more comfortably.

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We still don't know for sure about surgery tomorrow. It could happen, but might have to be pushed back until I can breathe a little more easily. Right now we are coordinating with surgeon, anesthesiology, radiation oncology, lungs docs, medical oncology, maybe more. Lots of people, all dedicated to helping me finding my place in this world again.

Thanks for checking in on me!

:-) Sharon

In Hospital

Admitted 5/2/09. Pneumonia.

More details soon.

Next Plan in Place

If things go as planned, I will have my 18th cancer-related surgery since October 2000 to remove the latest round of spinal tumors on Friday, May 8, 2009 at Vanderbilt University Medical Center in Nashville, Tennessee at 8:30 a.m. CST. The surgery will take about eight hours.

I am scheduled to go on Tuesday (5/5) for pre-ops.

The strength in my lower body is fading quickly, a eerily-familiar refrain of past calamity. I still can't believe that this is happening again so soon. I just want to get it behind me so that I can turn my energy toward healing again.

Please pray for me as I face this latest crisis.

:-) Sharon

Hello Darkness, My Old Friend ...

My worst fears were confirmed yesterday: the spinal tumor is back, with a vengeance. It has filled the cavity from T7- T9, wrapped around my spinal cord, and is blocking 70% of the neurological signals to my lower body. Weakness is starting to set in, and the pain is horrific.

And so, the nightmare begins again.

I am hoping for an appointment with my neurosurgeon at Vanderbilt next week to discuss the possibility of another surgery. In the meantime, I went to the regional cancer center today to look into a procedure called Tomotherapy. It is an extremely targeted type of radiation, similar to a cyberknife. There would be some risk involved to my spinal cord because of the fact that it was previously radiated (January 2006).

As part of the prep today, they had me lie down on a CT scan table with a blue beanbag-looking thing under me. After positioning me exactly as they wanted, the pumped air into the blue thing to make a mold of my body. This is done so that I will be in the exact same position for each treatment, lowering the risk of accidental damage to the spine. I was a little freaked out by it. It was very confining. But then came the worst part of the ordeal: They taped a large piece of clear plastic (ala Saran Wrap) over me from my feet to my chin, then used a vacuum device to suck all of the air out to further restrict movement during the treatment. Essentially, I was shrink-wrapped in a blue mold. By this point, I was extremely freaked out. I was so thankful when at last they came to help me up and off of the table.

Now that I am home in my trusty old chair, I have finally calmed down again. I can't say that I even have a preference right now between surgery and radiation. I'm too shell-shocked at the news that the tumor is back and too overwhelmed physically by the pain and grueling tests to be objective about it. Clearly, another surgery would be very difficult for me; but, it might be possible to completely remove the tumor and give me another start. Radiation is less traumatic (not counting the vacuum-sealing), but less guaranteed than surgery. The very best course of action might actually be both: surgery, followed by a course of "preventive' radiation.

Right now, it's just so much to absorb. I just simply cannot believe that this is happening. Again. Already.

I will keep you updated as soon as further arrangements are made.

:- Sharon

I'm Still Standing

Happy Easter!

I know I haven't blogged much since my eyesight has become difficult, but here's a quick update:

I started radiation last week on the sinus cavity tumor. So far, I've had 5 treatments out of 15.

Don and I probably aren't going to go to Hugfest. I'm not sure how well I could handle the trip, since I am some difficulty with pain. I have nerve pain that shoots down my sciatic nerve when I sit in the wheelchair for any length of time, and I have really aggravated my right shoulder with all of the pulling I have done while my legs were weak.

And here's the kicker: I've been having nocturnal back pain again. I am absolutely terrified that there might be another spinal tumor. I will have an MRI as soon as it can be scheduled to investigate.

I won't lie to you. Things are really hard for me right now. There are a lot of urgent decisions to be made, and some of them are excruciatingly painful.

Please pray for me and keep some happy thoughts handy. Hopefully my next post will bring better news.

:-) Sharon

Old Time is Still A-Flying

At 2 a.m. on the morning of March 26th, I awoke to find Andrew and Josiah standing beside my bed, grinning excitedly and chanting, "20 and 21, Mom! 20 and 21! How does that make you feel?"

"Old," I muttered, raising up to squint at them in the darkness. I flopped back onto the pillow. "And tired."

And so it has happened. I now have TWO 20-something sons, along with 19 and 18 year old daughters, and another son who will be 18 this summer, 2 16 year-olds, 1 soon-to-be 13 year-old, and a 10 year-old. All of my babies are growing up on me. Still, it occurs to me that Andrew and Josiah were 11 and 12 when I was diagnosed with cancer. The bottom line is: I AM STILL HERE. Yes, I have suffered. Yes, I have lost. Yes, I have even questioned God during my weakest moments. But so far, miraculously, I am still here, celebrating birthdays and enjoying my children (albeit at very odd hours). When you have teens and grown children, you learn to seize the moments when they come.

On the medical front, my appointments in Nashville last week went very well. My spine looks great, and has healed very nicely. The old hip/femur prosthesis is as sturdy as ever. The cancer on the inside ring of my other hip is still there, but doesn't seem to be any worse than it was when it was last scanned. I am going to return to the spinal surgeon's office in three months. He wants to keep a closer watch on things, in case it comes back again.

Also, I made an appointment on April 1st with the local cancer center to see about radiation on the sinus cavity tumor. I keep telling myself that this is the fastest option, but I can't help but wonder if my true motive isn't plain old laziness. I am tired -- tired of traveling, tired of chasing the cure to the ends of the earth.

Overall, I am doing well these days. I'm rarely in pain, and my stamina has improved. My main problems involve my eyesight and the fact that I still have absolutely no desire for food, in spite of the fact that I am now two months past surgery.

Spring is here, and the world is green again. I plan to celebrate every single day, because it all goes by so fast ...

"20 and 21, Mom! 20 and 21! How does that make you feel?"

Blessed. Very, very blessed.

And old as Methuselah's daddy!

:-) Sharon

The Verdict about the Sinus Cavity Tumor

I can barely see out of that one eye now, so this will have to be very brief.

You may remember that I saw the doctor last week about the sinus cavity tumor. He sent me for CT scans of head, neck, and face, and I returned today, hoping to schedule surgery. Unfortunately, it isn't quite so simple. The tumor is quite large and is pressing against the bone in my forehead AND it has invaded my eye socket. I already knew it was putting pressure on my eye, and causing my vision problems. He cannot tell from the scans if the tumor is actually wrapped around anything or if it is just spreading out to fill the facial cavities. SO -- he doesn't want to do surgery until/unless the tumor can be shrunk via chemo or radiation or a combo of the two.

My choices? I could pursue another chemo trial, but that would be a very risky maneuver given the fact that the tumor is obviously growing and is already impinging on my eye. I could and very well might consider radiation, but I would have to know the possible side effects of facial radiation. Or, I can see another surgeon. I have the name of one at Vanderbilt, and I could send my records there for review. I have two weeks to decide, and then I return to the doctor on April 6th.

Speaking of Vanderbilt, we are headed out tomorrow morning for my followup appointment with Dr. Cheng and my yearly visit with Dr. Holt (hip/femur). We will be home Wednesday evening with Josiah, who is flying into Nashville tomorrow for a birthday visit. I can't wait to see him.

Please, if you need to communicate with me, try to call rather than using email. With my eyesight the way it is, I have a very difficult time reading the messages, and an even harder time typing a reply.

Thanks for the prayers and happy thoughts!

:-) Sharon

The Heaviness of Being

Hello again, dear friends and beloved family!

Well, I am nearly six weeks past surgery now. I can go 50 steps on my walker, and I've set a goal for 100 steps per day. I am doing my pt exercises 3 times per day, and I can really feel my legs getting noticeably stronger. I still tire easily, and my appetite is just non-existent. I was drinking two Boost High Protein drinks per day to supplement my diet, but as of Thursday of last week I can't keep the Boost down. I think I may have caught a bug, because we have been passing them around. Don goes with a can of Lysol in his hand all of the time. When he comes down the hall, I can hear him spraying before I can see him.

On top of this, the seasonal changes are causing allergy problems and asthma symptoms. I saw my lung doctor this morning, and he prescribed an Albuterol inhaler and Xopenex for my nebulizer. According to the doctor's scale, I have lost 25 pounds since my last chemo treatment in December. I go back in four weeks for a followup appointment.

I can't help but wonder if stress isn't contributing to my asthma / cold symptoms. I always get cold symptoms when stress piles up on me. And boy, is it piled up these days! Recovery from difficult surgery. Ever-growing sinus cavity tumor that makes vision difficult and typing nearly impossible. (See updates below for the latest on this one). Multiple sick Lemings in the household, with a variety of bugs. We've had vomiting, fierce diarrhea, headaches, sore throat, fever, stomach woes -- you name it. We didn't all have the same symptoms, so I think we have passed around several different bugs. (I'll spare you the gory details.) Finally, MAJOR child crisis, which will come to a head tomorrow morning at a school hearing. Ugh!

UPCOMING EVENTS:

3/17/09: I will see the surgeon who did my neck/tongue surgery (I get shivers just thinking about that one -- the most. painful. surgery. ever.) But I really like that doctor, so I hope he can help me again with the sinus cavity (eye socket) tumor.

3/24/09 - 3/25/09: Followups and tests at Vanderbilt from my spinal surgery and a hip/femur check.

4/9/09 - 4/10/09: We travel to the Nashville area again to (hopefully) start a clinical trial with a company called NeoPlas Innovation. This trial uses two drugs that are already FDA-approved: lovastatin (a cholesterol drug) and low-dose Interferon (a protein made by the immune system). The good news is that they are having a lot of success in achieving DFP (disease-free-progression) on a variety of cancers, most recently sarcomas. The bad news is that they have not tried the treatment on a leiomyosarcoma yet -- but they are willing to do so if I am. Since there is no risk to liver, kidneys, or heart, and no immunosuppression, I think it will be worth a try. I will have regular blood work and scans every two months to see if it is working. If you want more info, you can check out their website: http://www.neoplas.org/ .

4/16/09 - 4/19/09: 2009 Leiomyosarcoma Hugfest in New Jersey. Yes, I AM going to try again (hopefully I won't derail a whole trolley tour this time).

So, there you have it -- an update on my world! Thanks so much for caring about me. It means more to me than I can say.

:-) Sharon

Meltdown at Table 12

Hello again!

One of my main difficulties these days is a complete lack of appetite. I have been supplementing my meager amount of food with Boost High Protein and some supplements, as well as Megace -- which is not only an appetite stimulant, but also has been known to suppress leiomyosarcoma growth in tumors that are progesterone positive. I was on Megace years ago when I was under the care of Dr. Cofer because my tumors tested mildly positive for progesterone sensitivity. So who knows? Maybe it will make me want a cheeseburger AND slow the tumor growth. Well, I can dream, can't I?

On Thursday, Don wanted to take me to lunch to try to coax my pitiful appetite, so I decided to try some grilled chicken and rice at O'Charley's. It's bland, delicious, and contains good quality protein. We were seated in the very back corner of the restaurant, which was fine with me because I like privacy. As we ate, we couldn't help but hear the conversations of a noisy table of about 8 people behind us. I was mildly annoyed as they talked about people they knew and places they remembered in town that are gone now, but I was happy to actually enjoy a little bit of chicken. After a while, their conversation took a turn and it became clear that one gentleman was giving a sales pitch to the others.

Sigh ... As I took another bite of chicken, I decided that I might as well "tune in" and hear what he was hawking. It was some sort of high anti-oxidant, "healthy" chocolate. You can imagine my horror when he began to describe how people had been cured of cancer after eating three squares a day, diabetics had been healed, and people who had been in wheelchairs for years stood up and walked.

I started to cry. I mean, who doesn't want to think that 8 1/2 years of horrible suffering could be cured if I only shelled out $150 a month for 3 chocolates a day? Suddenly I couldn't stand the thought of food. There was no more eating for me.

Okay, here's the part that I am not proud of: As Don wheeled me past the table, the man fervently continued his sales pitch, telling how his own Daddy had cancer, but when he died they found no trace of it in his body. (Huh? Did they roll him into the CT scanner on his death-bed? And if the cancer was cured, what killed him?) I said aloud, "I sure do wish that was true!"

The salesman turned to me: "Wish what was true?"

"I wish that chocolate cured cancer," I wailed, the tears streaming down my face. "I wish it made people walk who have spent years in a wheelchair!"

Don continued to wheel me briskly toward the door. (Poor Don!) The salesman followed us and stopped us in the lobby. In his hand he held a box of the chocolates and a business card. "Here," he said. "Take three of these a day and call me in three days to let me know how you feel."

And so I came home with a box of miracle chocolates and a husband who probably never wants to take me out in public again.

Now, don't get me wrong here. I KNOW that nutrition plays a part in healing, and hopefully in curing/managing cancer. And I do know that anti-oxidants play a role, too. But NOTHING makes me madder than someone touting a snake oil or "miracle cure" to desperate people like me who have suffered immensely. Here are some of the very simple things that people have told me would make my cancer disappear:

- Vitamin D and red wine
- Goji juice
- Hot green tea
- Chinese herbs
- High doses of B vitamins, especially B-17
- Intravenous vitamin C
- And now, miracle chocolates!

Again, I KNOW there are natural things that can be of help. And I do take supplements as recommended when I can. (You aren't supposed to take vitamins when you are on chemo, because it can counteract the effects.) But, listen, I have suffered a lot over the past 8 1/2 years, and I resent having my struggle minimalized by people who know nothing about it and make it sound like I am suffering by choice rather than by destiny.

My physical therapist, Kelly, thought the whole thing was hilarious. She said that only I could manage to leave O'Charley's with $150 of free chocolate. And yes, I am eating three a day. (Hope springs eternal, which is what makes things like that so dangerous and downright cruel.)

Speaking of Kelly, she is the best physical therapist in the world! Time after time, she coaxes me back onto my wobby legs to stand and walk again. Even though the feeling is still not great in my legs, I walked 24 steps with my walker while she was here on Friday -- all the way from my chair to the front door. She was amazed that I could walk so many steps when I have been basically non-ambulatory since July (when I was told to stop walking because of my hip). My neurosurgeon, orthopedic specialist, and an orthopedic specialist in L.A. all concur that weight-bearing will not make a fracture any more or less likely than it already is. And weight bearing will certainly help my strength and my bone density.

I am slowly coming back to life, and gradually finding joy in everyday things again. I've been clipping coupons, getting dressed (most days), sewing, and even getting out of the house once in a while. The cancer may get me one day, but it doesn't appear that it will be today. Tomorrow doesn't seem likely, either. My hope for the future -- my hope that there will be a future -- is slowly seeping back into me. I find myself looking forward to days that haven't yet materialized, to adventures that haven't been experienced, and to dreams that could still come true.

:-) Sharon

Two Weeks Out

Here's a picture of me taken last night as I rested in my trusty old hospital bed. Can you see the tumor impinging on my eye? Well, if you've wondered why I haven't blogged, e-mailed, or texted much lately, there's the culprit. Because of it, my vision crossing very often, especially when I am looking at something close-range. I have to close one eye because I can't focus them together, and it makes typing very difficult. It looks like I may need to have it removed in the near future, and may very well become "the next thing" in my cancer journey.

Other than that, I am happy to tell you that I am doing as well as I could hope at the two-week-since-surgery mark. My legs are getting stronger each day. I can stand, do basic pivots, and I even took a couple of very small steps during physical therapy yesterday. I have stopped the strong pain medicine (goodbye, crazy dreams!) in favor of Aleve or Advil for my muscle pain. Even though I move slowly and painstakingly, I AM moving, and that's the main thing.

Life here in Lemingland has settled back down into a rhythm, and that works so much better for our crew. The day after I wrote the last blog entry, I sat everyone down after breakfast and introduced a new "framework" for snow days and other unexpected, unscheduled days. Since our children thrive on routine, it helped them to know what to expect and how to earn extra privileges. It improved things tremendously, and I was able to get the rest I needed while making sure that they felt calm and cared for, too.

And so, dear friends, I wait with varying amounts of patience for my wounds to heal, my strength to regain, and beautiful, blessed Spring to arrive. Luckily, for right now, time is on my side.

:-) Sharon

Keep Me Hangin' On

Well, if you've been waiting patiently for my usual home-from-the-hospital-and-disgruntled-with-life post-surgery post, here it is! (And if you haven't, well you've been warned ...)

We made it home in a mere EIGHT hours from Nashville yesterday. Since Vanderbilt UMC is 220 miles from home, this means we averaged a barn-blazing 27.5 miles per hour on our trip home. Why, you may ask? The main reason was an agonizing, desperation-fueled search for a near-the-interstate-exit pharmacy that would fill the pain prescription of a random traveler who looks like she has been fighting a wolverine. I actually learned a couple of things: 1. Pharmacies don't generally flock to locations near interstate exits, and 2. Good ole', hometown pharmacies are very suspicious of crazed patients in nightgowns seeking pain pills near the interstate. When we finally found a Walgreen's store 100 miles from home that would fill it, they made us wait 35 minutes so they could "verify the authenticity" of the prescription. Oh, sure, take your time. I'll just be over here in the parking lot screaming and writhing in pain while you verify it. (And what choice do I have at that point, anyway? Now, they have the prescription in their hands and if I take off, it will only seem more suspicious to them.) As nightfall came, a fog settled in over the shroud of snow-covered trees, further slowing our progress. In spite of my gown and blanket, I shivered the rest of the way home, ignoring the urgent ring and buzz of the cell phone, trying to doze until relief came from the pain and we made it home. Upon arrival, I greeted the freshly-delivered hospital bed like an old friend, and settled in for a long night's rest.

I tossed and turned all night, sweating and drifting in and out of disturbing dreams filled with an army of green-glowing skeleton doctors (ala neurosurgery interns) moving my hospital bed down a long white corridor while flying monkeys dabbed at my sweat-soaked brow with white washcloths. Between dreams, I felt nervous and jittery. It was a relief when daylight finally came.

Or so I thought. You see, the geniuses that run our local school system decided to call school off for Tuesday, not based on any actual weather that was actually on the road, but based on a forecast that we might get more this afternoon. So -- I not only have a shoulder-blade to rump incision that hurts like crazy and lies right beneath me so that I am on it all the time, I now also have a band of rowdy children who don't adapt well to schedule changes and are now home for the day, bored and restless. I won't torment you with all the gory details, but here are a few highlights:

- Lacey (as in my ADULT daughter Lacey) trying fiercely to run Zach out of the front room, where I had sent him because my nurse was here with my gown pulled up completely over my head to check my incision.

- Derrick purposely whamming the vacuum cleaner into the wall so that I would jerk awake from my sleep. He and Eric have long thought that it is quite hilarious to see someone yanked from sleep. I think Eric has finally outgrown it, mostly. Derrick, not so much.

- Ashley, who baked a cake and is now going to frost it, tries to get the layer out of the pan and yells for Lacey to help when it falls apart in her hands. Instead of running to help, Lacey mimics her, signaling an angry tirade and a mostly-ruined cake.

- The final straw: I sent Ariel and Zach (who could not be civil to each other) to their own rooms to play while Don cooked, and finally managed to doze a few minutes before he brought me a plate of spaghetti. Ashley and Lacey were fixing the kids' plates and pouring their drinks. As I pulled the fork to my mouth, I opened an eye. First I saw Ariel, standing the doorway of her room with a wild-eyed look, waiting to get out of her bedroom (which she considers a punishment, no matter what the reason she is in there). When I dropped my gaze, there was Zach, slithering like a snake across of the floor on his back, trying to sneak into the family room without my notice. (All of this in the 15 seconds before supper was ready for them!) I handed Don the plate in despair and cried myself back to sleep, only to be awakened a short while later by a call from my mother, asking if I realize that school has been called off for tomorrow, too?

Oh, but wait, there's more ...

I managed to pull myself together and stick it out until the kids went to bed, after which I was going to brave the great frontier known as the drop-arm bedside commode (because this day really just wouldn't be complete without a little bathroom humor, now would it?). There were flaws in this plan, the main ones being that 1. it was time for pain medicine (not a great time to plan activity), 2. it was getting late and I am weaker later in the day, and 3. I REALLY needed the toilet by now which just makes everything that much more urgent. I used the slide board and got on the potty without much problem. Then I tried to figure out how to clean myself without pitching forward off of the dumb thing. By this time, I am really weak, my legs are basically numb, and I am going to use the slide board to slide back to my lift chair. About halfway across, we realize that there is too much gap between the board and the chair, making it unstable. I had to slide back onto the potty and wait, weak and in pain, while Don got and positioned my Jazzy on other side of the chair and sidled me up to the bed. My arms are weak, my legs useless, completely numb and twisting as I go, my butt is stuck to vinyl Jazzy seat, and then we realize we have another problem: the chair is turned the wrong way, and will have to be moved before my legs can be turned into bed! Okay ... stop, breathe, relax, don't panic. Don covered me with a sheet and we called Eric and Lacey to help lift my legs, move the Jazzy from beneath and turn me into bed. All told, what started as a simple trip to the toilet had ended in nearly an hour of sliding, positioning, maneuvering, and struggling.

Now I am in bed, resting quietly, and wondering why in the world I didn't opt for the bed pan. My incision hurts and my fever has spiked to near the "call-the-hospital-if" level. But, hey, being the eternal optimist that I am (and armed with a fresh dose of pain medication), I welcome the night with its uncertainties and strange, drug-induced dreams. Flying monkeys? Glowing skeleton doctors? Hey, that's nothing compared to the insanity of my waking hours.

To sleep, perchance to dream ... and maybe, just maybe, to propel myself forward to a kinder, gentler day of my life.

:-) Sharon

Another Surgery is Completed!

I am happy to report that the surgery was successful. The doctor removed a fully-encapsulated tumor from my spine. It was the size of a grown man's fist, which explains the horrible pain I was suffering. Because it came out intact, the surgery was much shorter (3 hours instead of 8!) and hopefully much less traumatic to my body.

When I woke up in the Recovery Room, I could immediately tell that my legs were stronger. I was able to stand briefly with the help of physical therapists yesterday. Dr. C thinks that it may take several weeks for my spine to heal and recover, but he is hopeful that I will regain the full strength that I previously had.

I am weak, of course, and the incision is quite sore, but overall I am in much less pain since the tumor has been removed. The nurses have been so kind to me, and I am resting comfortably most of the time.

My next goal, of course, is to get out of here! If all continues to go well, I might be able to go home on Monday. I know I have a hard road ahead of me, but I am ready to move forward again.

Thanks to everyone for the prayers, calls, cards, letters, and gifts. I am truly, truly blessed.

:-) Sharon

Well, Here I Go ...

Hello, dear friends and beloved family!

My surgery should begin at 11:00 a.m. CST, about 11 1/2 hours from now. It is scheduled to last about 8 hours.

I will have someone place an update on here ASAP. Please pray for me for a smooth operation and a speedy recovery.

I've done this enough times to know that the days and weeks ahead will be difficult, but tonight I have peace in my heart. I am ready to get this behind me, get rid of the spinal pain, restore the use of my legs, and to truly be able to LIVE again!

:-) Sharon

Tonight I Fall. Down.

Well, it has happened. Last night my legs became so weak that I am no longer able to stand. I hoped that it was just because it was late and I was tired, but sadly, the morning brought no relief.

When I consulted with the doctor's office today, I learned that we are dealing with a very large and precariously placed tumor. This means that I am going to have to go to Nashville this evening to be admitted to the hospital. They hope that high-dose steroids will reduce the swelling, alleviate some of the pain and numbness, and keep the situation from worsening before surgery next week.

So -- Don is packing right now and then we will use a slide board to help me transfer into the van for the trip. I will go to the ER at Vanderbilt, and they will check me into the hospital from there. I don't know about internet access, so this may be the last time you hear from me for a while. If I am unable to post, I will make sure that someone gives you regular updates about my condition until I am home again.

Please pray for us as we walk this present valley in pursuit of a happier, healthier day.

:-) Sharon

The Plan is Made

I will have surgery at Vanderbilt University Medical Center on Thursday, January 29th at 10:00 a.m. I will actually be admitted to the hospital on Wednesday for pre-ops.

I had a MRI done yesterday while we were in Nashville, and it revealed a better view of the new tumor at T8 - T9. I will have full body bone scan done here in Morristown on Monday, along with chest x-rays.

According to the doctor's office, the surgery will take about 8 hours, and I will be hospitalized for about one week. (But you know me: I'll be out of there as fast as is humanly possible. After my last spinal reconstruction surgery, I was home in 3 days.)

For some reason, I am utterly terrified at the thought of surgery. I don't know why it is hitting me this way. I am sure that I will make peace with the prospect of it over the next several days, while also preparing everything here for our absence. But right now it makes me feel very afraid.


The strength in my legs is almost completely gone now. I can barely stand and transfer. As often as possible, I slide from one surface to another instead of standing.

Please pray that the surgery will salvage/restore the use of my legs!

I love all of you and really appreciate your care and concern for me.

:-) Sharon

Happy 50th Birthday, Don!

The love of my life is 50 years old today. We celebrated here at home with homemade pizzas and chocolate cake. I am so thankful that he and met nearly 18 years ago. He is my best friend, and there is no way I could have made it through the past 8 years without him.

As for me, I am just trying to hang on for my appointment in Nashville on Wednesday. The pain is reasonably controlled for right now, but it does get out from under me sometimes and it's very hard to get it relieved again. My legs are very, very weak. They feel "fuzzy" all of the time, like they are asleep, but so far I am still able to stand and transfer.

If I think about it too much, I am very frightened about the whole situation. I wonder what tomorrow's CT scans will show, what Dr. Cheng will say on Wednesday, what the fallout will be from this latest setback, and what price will have to be paid to regain some normalcy.

We will know the answer to these questions shortly. In the meantime, I try to enjoy the life that I have so stubbornly fought to retain. Birthdays. Housewarmings. Appointments. One season of my life continues to roll into the next, one blessed day at a time.

Happy birthday, Sweetheart!

Time Marches On

After a miserable night of pain and fear and agony on New Year's Eve (as you witnessed in my last post), I called an ambulance first thing in the morning on New Year's Day and went to the hospital for some intervention. They gave me a shot to get it under control and then prescribed me some pain medication to (hopefully) keep it from getting so severe again. You know how I feel about pain medicine -- I don't even like to take a Tylenol; but I am taking this stuff faithfully because I cannot bear to hurt like that again.

I finally have an appointment scheduled with Dr. Cheng, the neurosurgeon at Vanderbilt who did my spinal reconstruction surgery in August 2007. It is on Wednesday, January 21st, and even then it is a "work-in" appointment (read: long day). That's okay, because I am desperate to hear that he can help me again. The leg weakness is bad enough, but the pain is just unbearable.

Of course, this officially means that we will not be going to California this month for a Yondelis treatment or to try the SUCCEED trial. I guess I will just take the chemo break while we weigh our options in Nashville. I will still have CT scans some time this week or next week to see whether I have maintained stability on the Yondelis. The SUCCEED trial will be out because it has to be started within a strict window of time following other treatment, but I could go back on the Yondelis as long as it is still working for me.

In other news, another young Leming has flown from the nest. Autumn moved into her own place this weekend, a cute little efficiency apartment about 10 minutes from here. We wanted her to stay home until she finishes two years of culinary school, but she was determined to try her wings. I've been very emotional about it, but I am trying to be supportive of her.

It just hurts so much when they leave home. Do they have to grow up so fast? Time passed in a fog of days and weeks and years, and now I find myself wondering where it all went. And I find myself wanting more of it, more days and weeks and years, more moments and seconds and memories.

More precious time. Please, Lord, let it be ...

:-) Sharon

The End of the Year

Hello, friends!

I had planned on ending the blog's year on a high note, going over a review of the high and low points of the year. I even assembled a photographic journey of my own physical metamorphosis throughout the year, which you can see on my photo page.

However, I am actually ending the year on somewhat of a downer -- the spinal pain has just simply spiraled out of control. I am working diligently to get an appointment with the neurosurgeon in Nashville to see if anything can be done to fix the problem. At this point, I would settle for just proper alleviation of the pain for a little while. Records have been faxed back and forth, and now I am waiting to hear from them at the first of next week. In the meantime, I am hunkered down here in my chair, trying to coax myself from one day into the next one.

So, instead of a full-blown celebration of the new year, I offer a simple toast: here's to the people who make my life worth living, my fight worthwhile, and the future worth facing -- come what may. I love all of you very much, and I dream of better days in 2009 for all of us.

:-) Sharon

I'll Be Home for Christmas

My legs are feeling much more normal after several days of unusual weakness and tingling. Actually, I am a little embarrassed about that whole trip-to-the-emergency-room thing. Over time, I have learned to expect the worst when a new symptom pops us. There was an article online about PTSD in cancer patients, and it described it as "waiting for the other shoe to drop". That's a really accurate description of me these days. Instead of my old mantra, "ignore it and maybe it will go away", I seem to have adopted a new one: "oh, no, what now?" I know the "old me" wasn't very wise, or proactive, but I am not certain that I like this current self any better. I find that I am both gun shy and yet oddly trigger happy at the same time.

Still -- you know where waiting around got me three years ago with the first round of spinal tumors (bedridden for five months!), and it happened around Christmastime. When I woke up the other morning and my legs felt hollow, the eerie similarities were terrifyingly too much to ignore. I called my home health nurses, and my doctors' offices, and they tried without success to get me an outpatient appointment for an MRI. The first available date was December 3oth! I obviously needed to have my legs checked out, so they recommended that I go by ambulance to the ER to have one done.

Strapped to the stretcher in the back of the ambulance, I peered out the rainfogged windows at miles and miles of distinctly wintergray sky, broken up only by an occasional power pole and the macabre dance of naked treetops bowing in the wind. I tried in vain to erase the memory of Zach's worried face as he asked: "Will you be home for Christmas, Mom?"

"Yes, Zach, I will be here for Christmas."

"You promise?"

"Yes, baby, I promise ..."

As a parent, I try to never make a promise that I am not certain I can keep. But this time we had a happy outcome. I AM home. And all is well here in Lemingland. The gifts are wrapped and the stockings are hung and a warm fire glows in the fireplace. Still, I feel shaken by the whole episode. Sick. Uncertain. Vulnerable. I miss the me who wholeheartedly believed I could just overlook it and it might all just go away. That "pollyanna" me is gone forever, and I really hate that.

I long for the innocence of a child like Zach again. He believes that Christmas has magic, that good guys always win, and that he can count on me to be here for him forever. And it sounds so good, doesn't it? As long as there are "promises to keep", nothing will happen to me, right? Oh, how I wish ...

But I AM still here, and that's saying a lot after a year like this one. Thanks to the mercy of God, I will be home for Christmas. I will be alive for Christmas.

Yes, Zach, I promise.

:-) Sharon

Losing Ground?

Everyone, please start praying because I am waiting for the ambulance to come and take me to the hospital. I lost feeling in my legs overnight.

UPDATE: CT scans show no additional growth of the spinal tumor. The verdict is that the weakness is most likely neuropathy, caused by the cumulative doses of chemo. It will hopefully get better with time. The ER doctor did say that I need to make an appointment with my neurosurgeon at Vanderbilt to discuss treatment of the spinal tumor before it gets any worse.

At any rate, I am home tonight -- and very relieved!

:-) Sharon

Rolling Through December

Wow! December 15th! I can't believe we are halfway finished with the last month of 2008. When I think back over the year, I realize that I wasted a lot of valuable time worrying and fretting about things that don't even matter. I guess we all do that sometimes, don't we?

I am working hard to pull off the quintessential Christmas holiday for our large family. The decorating is finished, and we have been enjoying our beautiful tree since Thanksgiving. Tonight was our neighborhood's yearly luminaria display. It was quite a sight to see until the rain snuffed out the candles. It is supposed to rain all week here, so the luminaria date was so "iffy" that the entrance sign said "Luminaria Monday. Or Tuesday. Or Thursday." Haha! I love to drive through the neighborhood while all of the candles are burning. We didn't go out this year because of the rain, but even from our doorway it's a beautiful thing. It looks like a runway, which is SO symbolic of our year!

My shopping is almost finished -- I'm not sure that I am ever quite finished until the very last day. I always think of "one last thing" that I want to do for someone. There is a lot of wrapping yet to be done. Autumn usually helps me wrap when she gets home from work, but she has been out so late recently that I have already fallen into bed, exhausted, before she arrives.

And how am I feeling, you ask? Not too bad, all things considered. The worst of the nausea seems to be behind me, and I am slowly getting a little more energy. Chemo is no picnic, but I guess I have learned to live with it.

LIVE. And isn't that the whole point, anyway? To learn to live with and to triumph over the things that make us sick and weak, that take our strength, that hold us back and beat us down? So far I am still here to tell the tale.

And, yes, even on the toughest of days I do know how lucky -- how blessed -- I truly am.

:-) Sharon

Miles to Go After I Sleep

Wow, I can't believe it's been more than two weeks since I blogged! Here are some updates:

We went to Florida! Don's aunt was very ill (doing better now), and he was bemoaning the fact that we had not gone to see his family there in SEVEN years. (We used to go twice a year until the kids got older and had commitments and he changed jobs and my health declined and so on.) So I suggested that we could go if he wanted. We left on the Sunday before Thanksgiving and came home on Wednesday. Our five youngest children went with us. Autumn and Lacey stayed home because of work and school. We had a really nice trip. It meant a lot to Don to see his family and all of his old haunts.

Thanksgiving was great! My sister Amy hosted the family dinner at her house this year. It was the first time in seven years that we had not hosted a dinner here. We did make homemade rolls and other things to take with us. There were 30 people at her house, and everyone had a wonderful evening. Amy did a terrific job of making all of us feel welcome and comfortable.

Since we were not preparing for a crowd here, we decorated the house for Christmas. I wanted Josiah to see it in case he is not able to come home again this year. The tree is up, with Don's train around the bottom, the stockings are hung, and the Christmas houses are on the mantel. It's beautiful, and so peaceful, especially with a fire crackling in the fireplace. The weather has been cold and dreary here all week, so the fire is a welcome friend.

Josiah did make it home for Thanksgiving. He stayed from Thursday to Tuesday. It was hard to see him leave, but my sorrow was slightly alleviated by the fact that we will see him tomorrow when we fly to L.A. for my sixth Yondelis treatment. On Tuesday, my Aunt Mim and her family visited us. We enjoyed having them here for the day.

Today is Zach's 10th birthday. We had a light snowfall, and he and his best friend Bailey (who lives next door to us) had a lot of fun playing in the snow. We ordered pizza -- with anchovies, because he insisted on trying them -- and I baked him a chocolate cake. His gift was a set of Indiana Jones legos, which he happily spent the afternoon assembling into various scenes.

So, that's what's been keeping me so busy for the past two weeks! Now our luggage is waiting beside the back door for our long journey tomorrow. I always hate being away from home, but I will be happy to finish my last treatment of 2008.

I'm ready for our next adventure!

:-) Sharon

P.S. - I almost forgot to tell you: I uploaded some photos of Thanksgiving week through today on the photo page. Take a look!

Hey, Do I Smell Funny?

Thankfully, the "lowered dose" effect seems to be true again, and I am feeling a little better each day. My appetite is slowing returning, and my energy is much improved. My back is still hurting a lot, especially at night, and you know how paranoid I am about my spine. But the recent CT scans showed no growth in the spinal tumors, so I am hopeful that it is just cold weather or old age or bad luck of some sort that it keeps hurting. I know, I know. Eventually I will have to pursue it further if the pain doesn't stop. For now, I prefer to be optimistic.

And I have great news! I'm sure you've heard of people pinching themselves to see if something is real. What about sniffing yourself? Why, you ask? Well, part of the reason is that yummy Twisted Peppermint lotion I found at the mall. But the main reason is that as of November 15th, I have officially done it: I am now past my expiration date. Do you remember, on February 15th, that Dr. Ibach gave us his estimate of how long I had to live? His prediction was NINE months. Nine months. I did the math in my head, and realized that if he was right, I wouldn't even be here for Christmas this year.

Needless to say, he wasn't right, and I am so thankful for a little more time. I know he meant no harm, only a realistic revelation of the gravity of my situation. I'm sure that he, too, would be happy to know that I am doing so well right now. I also know that late-stage cancer can take a sharp and vicious turn without warning. We've all heard the words, "But she was doing so well just this summer. We thought she would be around a long time."

So, yes, I know how fragile this victory -- and this LIFE -- really is. But Christmas looks distinctly possible for me, and even 2009 no longer seems like a far off dream. Thanks to an unlikely chain of events that has unfolded for our family this year, I am blessed with the opportunity to travel far from home for treatments by a true leiomyosarcoma expert each month. The stability I have achieved through the Yondelis has given us the most beautiful gift of all: HOPE. No longer do I feel like I am standing on the precipice of death, with the cuckoo clock of doom chanting out my last moments.

Instead, I am listening to the great symphony of my life as it plays a victory march. And my heart dances -- oh, how she dances! The music makes her reckless, the hope keeps her young, and the joy sets her free.

The song of life is a beautiful thing!

:-) Sharon

Back to My Beloved Chair

I have to say that flying home on Thursday did seem to be a little easier on me than our traditional Sunday departure. I was able to get home before the worst of the side effects ensued.

Tonight I am somewhat miserable, in spite of my determination to live well in spite of chemo. I am coughing constantly from an upper respiratory thing (for which I have been prescribed antibiotics), my stomach is queasy and uncertain, and my home health agency informed me today that my white blood counts are low (already! and in spite of the Neulasta shot!) so I need to be careful to avoid crowds, illnesses, and raw foods.

Mind over matter. Mind over matter, Sharon. I want to feel well. I want to triumph over the ill effects of Treatment #5. And I will ... just give me a few days, okay?

:-) Sharon

P.S. -- Rocki. Ann. Suzanne. Lisa. I guarantee you that each one of these wonderful women wanted to live just as much as I do. How many more of us must die before a cure is found?

On the Plane Again ...

Well, we will be "on the plane again" tomorrow morning. We will be on our way to Los Angeles for my 5th Yondelis treatment. For a few days, there was some question about whether this treatment would take place. My CT scans on Tuesday showed growth -- albeit slight -- in all test nodules, and in my very precarious hip tumors. I paid $32 to overnight a copy of the CT scans on CD for the doctor's review, but when it got there they were unable to read the CD. Sigh ...

I talked to Dr. Chawla, and he said that the slight growth could actually just be the difference in position on the CT machine or in the measurements of two different radiologists, and that's why they want the CD to review the results themselves. However, the growth (if it IS growth) was not enough to preclude me from continuing the Yondelis trial. So, we will be on our way to California tomorrow, equipped with a brand new copy of the CD that we obtained in a rushed trip to Knoxville this afternoon.

We are going to try something new this time: we are going to fly home on Thursday instead of Sunday. There are several reasons for this. It's really hard for me to be away from the kids for so many days at a time; my mother's birthday is Friday the 14th and my sister Jenny's is Saturday the 15th; on Sunday the 16th my youngest sister Lori is participating in a cancer fundraiser in Knoxville and she wants me to attend; finally, we are hoping to get home BEFORE I get sick since it usually hits me late Thursday or early Friday. As you know, it's always easier to be sick at home than it is to be miserable away from home.

I have really enjoyed some great days since my last treatment. I went to church, worked on the giant closet disaster, found some great coupon bargains, and went to dinner with friends. Don and I even went on a field trip with Zach's class on Friday.

And now, I gird myself up for the battle again, armed with a suitcase and a boarding pass. I am very weary of the travel, the treatment, the torment. I don't like the process, but I DO treasure the hope that it brings -- because, when you get right down to it, I have a wonderful, wonderful life.

That is why I fight so hard for the blessed privilege of living it.

Happy, Happy, Joy, Joy

Wow! Has it really been two weeks since I blogged? I wrote a couple of drafts but never finished them, and I guess the info would be sadly out of date now.

Here's the main news: I AM FEELING GREAT!

After the complications with my third treatment, my dose was lowered for this past treatment. I was sick as usual beginning Thursday night (24 hours after the end of treatment). I threw up Friday morning as soon as I sat up in bed, so I took some nausea medicine which seemed help some. On Friday evening, I convinced Don and Josiah to go to movies without me while I relaxed at the apartment. They reluctantly agreed, but they wanted to get me a babysitter. A babysitter! I finally wriggled out of that one when I promised to call his neighbor if I needed anything. And yes, everything was fine while they were gone. I watched television and dozed.

Speaking of sleep, after chemo I am exhausted and just want to lie around. One night, I overheard Josiah telling Don, "Hey, Dad, after you put Mom to bed you and I will watch a movie." Whoa ... when did those tables turn? It seems like just yesterday I was singing Josiah to sleep, and now he's sending me to bed early.

I was so-so on Sunday for the trip home, still sick on Monday, then on Tuesday I realized I was feeling better. I waited for a couple of days for "the other shoe to drop", and then decided to start enjoying myself while it lasted.

So far, so good! I've been doing things that I haven't done in ages, like driving, going to church, going to the movies, cleaning the house (sad, but true), and just enjoying each and every moment of every day.

I will have CT scans on November 4th to see if the chemo is still working. And then there will be tough decisions to make when I get back to California. But all of that is for another day. Right now, I am going to concentrate on living!

:-) Sharon

More Milestones

Hello, everyone! As you know, we are in California this week for my 4th treatment of Yondelis. The chemo is dripping at its usual 24-hour pace, but my dose has been lowered somewhat due to the "muscle wasting" complication.

Last week marked two important milestones in my life: October 10th was my 41st birthday, and October 12th was the 8-year anniversary of the day I learned about the ovarian tumor that changed everything. (Also, October 11th was our daughter Ashley's 16th birthday, so there was much to celebrate for our family over the weekend.)

Eight years. Wow.

This fourth treatment is also a milestone, in a way. It marks the minimum number of treatments necessary to be considered for the S.U.C.C.E.E.D. trial, although I don't know if we will go that route or continue with a couple more Yondelis treatments and then decide. The decision will most likely hinge on whether I have the egregious side effects with this dose, too, and if my upcoming scans (1st week of November) showed continued stability. (Actually, both continuation of Yondelis and the SUCCEED trial require stability/shrinkage, so I don't know what will happen if I have tumor growth.)

I am feeling well right now, and I am optimistic that maybe I won't be sick this time. I know that optimism is not justified by history, but hey, I can hope, right? In the meantime, I am enjoying the better days and enjoying hanging out with Josiah, who has been kind enough to allow us to stay right here in his apartment this time. It's nice, because it gives us a chance to spend lots of unhectic, uncomplicated time with him. Today we walked near the beach and had lunch at a little cafe. In the midst of the horror of treatments, we spent many happy moments of Josiah making my wheelchair (and me!) dance to the music flowing onto the boardwalk from the souvenir shops -- memories that brighten both these days and the days ahead when are far apart again. I am hiding them in my heart for those moments when I need to find a "happy thought".

(I also found a "toilet elevator" today so I won't get stuck on the toilet again. Try explaining that one to a 20-year-old clerk at Target!)

:-) Sharon

P.S. -- For those of you who are Josiah fans, you can now pre-order an autographed copy of his EP (to be released on October 28th). Look for the banner near the top of the page here: http://www.myspace.com/josiahleming .

The Winds of Time

Hello! I am finally feeling just a little better, although I am very, very weak. When I visited my lung doctor yesterday, he said that my lungs are now functioning at 60% of their capacity – down from 84% five years ago. The actual lung tumors are not significantly worse, but I am also dealing with the side-effects of the spinal reconstruction (which limits my lungs’ ability to expand), the many chemos and surgeries, and the forced immobility due to the precarious situation of my left hip. I guess this explains why I wear out so quickly and have so much less energy. It’s funny: I noticed (and might have even blogged about it) that after my spinal surgery I never fully recovered the same “spunk”. I never considered that it had affected my lungs until he told us this yesterday.

I’ve noticed within myself a troubling trend of late. It’s a sinking feeling, a general darkening of my outlook and my mood. I feel exhausted and overwhelmed more often than not, and have to dig deep within myself to find the resolve I need to push forward. It feels like I am moving into another season of my life, one that is cold and harsh and cruel and hopeless. I just don’t want to go there. Winter knows things that summer never fathomed, and if I’m not careful it would be easy to become bitter. And I don’t want to be bitter, because winter has its own beauty, too. When else can you see the true glory of the mighty oak, stripped bare and bowing in the wind, but still standing strong? When else can we find the world we know blanketed in tiny white snowflakes, each one miniscule by itself but grand in their totality?

While sorting through papers with Autumn last week, I found this poem that I wrote in college:

And as November tumbles in again,
It brings the echoes of the other years
That time has washed away, the now-and-then
Fresh swell of sorrow, tidal wave of tears.
The reminiscent soul is swept by cold,
As icy winds refreeze the present part;
Harsh memories resurface, dark and bold,
Cast shadows on the walls that line the heart.
And all is cold. And all is deep and fierce.
And all of the forces of the naked soul
Build cries up into screams, but no one hears,
Reach out to grasp for strength but cannot hold.
And so my tired heart, stripped bare, left numb,
Shrinks in the darkness, waits for spring to come.

Of course, there is no “spring” for me as far as my health goes. And it should come as no surprise that I am inching toward the winter of my life. Lush, green summer ended, obviously, when the cancer was diagnosed eight years ago this month. The long autumn has been colorful and unpredictable – breathtakingly beautiful in some ways, and unimaginably horrible in others. I’ve fought long, and fought hard, and my body has suffered a steep decline. That doesn’t mean that what’s left can’t still be very good.

Ordinarily, my good humor returns as my body finds new strength. Hopefully that will be the case now. And I will concentrate on the things that make me very happy, like a cold, dark evening with all of us gathered around a crackling fire in the fireplace, while the harsh wind that blows and the cold rain that falls just beyond our window only makes us feel warmer and safer and cozier inside our own home. I must make peace with the process of dying, yet at the same time find happiness in the blessed gift of living.

:-) Sharon

Yet Another Setback

Here's another entry for my dictionary of medical horrors: rhabdomyolysis: Muscles are a tasty snack!

It all started last weekend, when we were preparing to leave Los Angeles. I was so sick and so terribly nauseous that I not only stopped trying to eat, but also seriously slowed my fluid intake. On Sunday, the day we flew home, I threw up over and over in the hotel room before we left for the airport. To avoid throwing up on the flights, the only thing I drank all day was a small glass of apple juice on the first flight. The minute we got settled into the van at the Knoxville airport, I threw up in a plastic bag that we keep in the door pocket for that very purpose.

The nausea and vomiting continued, relentless. I always have some muscle pain and general weakness after the Yondelis treatments, which I have always attributed to the Neulasta shot. It was so painful that I skipped the shot this time, opting to have my blood counts closely monitored for any drop. So I was a little surprised that I was experiencing worse pain and weakness than when I did have the shot.

By Tuesday evening, the pain in both arms was excruciating. I took a couple of Advil and cried myself to sleep. By Wednesday, my arms were so weak that I couldn't lift a glass without assistance. I began to contemplate the possibility that this was more than just my regular post-chemo agonies. During that night, I woke up several times moaning or crying from the pain. On Thursday morning, I told Don that I was going to have to go to the hospital because this amount of difficulty was obviously not within normal limits.

Blood tests at the hospital revealed that my CK (creatine kinase) level was more than 600. That's 3 times the normal amount. The doctor diagnosed a mild case of rhabdomyolysis, also known as "muscle wasting". It happens when the muscle fibers begin to break down and myoglobin is released into the bloodstream. It is extremely harmful to the kidneys, and can even cause kidney failure in extreme cases (thankfully, mine was very, very mild).

The treatment for rhabdomyolysis is mass quantities of i.v. and oral fluids. I stayed at the hospital for six hours and received i.v. fluids, then the CK test was repeated and my level was beginning to drop. I came home and began a regimen of LOTS of fluids here at home. I will have the blood test repeated on Monday.

Due to the intense pain and weakness in my arms, I have been helpless and truly miserable. Even though I can finally lift a glass again, if it's not too heavy, I have a hard time doing many ordinary tasks. I can't roll myself in the wheelchair or buckle my own seatbelt or lift my laptop. I can't sew, can barely type, and just the simple process of getting dressed today made me hurt so much that I had to take Advil. It really makes me think about how much I have taken my arms for granted. My legs have failed me again and again, but I could always depend on my arms. Now, I wonder how long it will take to rebuild the lost muscle fibers and regain full strength of my arms. It's a sobering prospect.

How many ways can my body betray me?

:-) Sharon

P.S. - For those of you who haven't heard: Yes, the wheelchair came back! The airline found it and delivered it to our hotel at 3:30 in the morning on Thursday. I was really happy to see it!

Life is an Adventure

Hello, everyone! Don and I finally arrived in Los Angeles late Monday evening after an adventurous series of delays and setbacks. First of all, our second flight was cancelled on Sunday because of the weather conditions in Houston, so we didn't actually leave Knoxville until Monday at 6:35 p.m. (EST). When we arrived in Houston, there was an unusually long delay in getting me off of the plane. Don had already gone out to the doorway to stretch his legs, and I waited for the airline personnel to bring the aisle chair for me. And waited. And waited. Eventually Don reappeared with a shocking announcement: the airline could not find my wheelchair. It had not arrived in Houston with us, and Knoxville denied having it there, either. You know how uncertain I am about traveling anyway, and this has to represent the epitome of my paranoia about such things.

Fortunately, a Continental Airlines zone manager named Nathalie came to our rescue. She stayed beside us from the plane to our next gate. She called ahead to LAX, and, after learning that they did not have a loaner chair to send out of the airport with us, she arranged to have one sent with us from Houston, and then followed it until it was on the plane with us. So, instead of riding around on my own belovedly-pitiful chair, I am cruising around in an airline loaner special that is twice as wide as me and much too deep. It is so heavy that I can barely push myself on a level floor, and can't manage it at all on carpet or the slightest incline. When I called today to check on the hunt for my chair, the man asked me for an identifying description of it. I told him that my name is written on the back of it in giant silver Sharpie letters. It also has a large hot pink luggage tag that says "LEMING" on the outside and has our address, phone numbers, and e-mail information on the inside, as well as a Knoxville airport gate check tag. It is missing one armrest, and blue padding is protruding from the other one. The poor thing is pretty much one-of-a-kind, and would be of little value to anyone except me. I will call again tomorrow to see if they have found it. If they can't locate it after 5 days, the man said that they will purchase a replacement chair for me.

I am actually quite proud of myself for not panicking about the whole situation. I mean, what could be worse for a disabled traveler than losing the most basic of all medical aids? Maybe I am finally getting a little better at traveling without fear. Unfortunately, traveling without getting lost is another matter. It seems that Don and I spend a good portion of our free time wandering around in Southern California. When we finally got out of LAX (after waiting in line to file the missing baggage claim) and waiting for a Budget shuttle that could actually get the wheelchair ramp to operate (third time was the charm!), we headed confidently toward our hotel without fetching the Garmin from the suitcase. We were just a couple of blocks from the hotel when we made a late-night error in judgment and turned the wrong way. We drove until we passed Rodeo Drive, and then we looked at each other with the alarmed realization that we were nowhere near our hotel. Don stopped at a gas station, got the Garmin, and we finally arrived at the hotel at 1 a.m. pacific time -- yep, that's 4 o'clock in the morning to us east-coasters. We fell into bed a half-hour later, utterly and completely exhausted, to get a few hours of sleep before our hectic Tuesday schedule.

Medical updates:

The orthopedic surgeon doesn't think surgery is a good option for me, because the surgery he performs (an internal hemi-pelvectomy, aka an "internal amputation) really is a last-ditch effort that would afford LESS use of my leg than I currently have. He doesn't think that the small amount of weight-bearing I am doing will cause any harm, and thinks that radiation might be of some benefit to me. Also, he won my admiration forever when he said that my lung tumors are "not the worst that he has seen" and that he sees some signs of calcification in them, which could mean that the chemo is killing them or that previous radiation might have done so.

Dr. Chawla's office is pleased with the results of last week's scans, so I had my third treatment yesterday and today. I declined the Neulasta shot in hopes that I can prevent the horrible side effects I experienced last month. It's a gamble, of course. If my white blood counts drop too low, I will have to get daily injections of Neupogen to rebuild them. It's a chance I am willing to take, so we will see how that turns out.

He says that there is a trial that he might put me on when I break from the Yondelis after 6 treatments or so. It is called SUCCEED, and it uses deforolimus, which is a targeted therapy rather than an actual chemotherapy drug. It has been found to lengthen the progression-free survival (a big buzzword in dealing with sarcomas) after a successful chemo treatment. The good news is that I could take the deforolimus by pill at home, which would probably mean fewer trips to California during that period of time. The bad news that this is a "double-blind" study, which means 50% of trial participants get the actual drug, and 50% get a placebo or "dummy" pill. I guess this wouldn't be the end of the world, because I would be taking a break anyway, but it would be disappointing to think that I wasn't getting something that could help me. Deforolimus does have side effects. The most common (70% of cases) is mouth sores, but there are also my personal favorites -- nausea and vomiting -- as well as loss of appetite, rash, and fatigue. So it's not a picnic, but at least it IS an option. I am so thankful to be getting treatment in a place where they don't feel like my cancer is the worst they've ever seen, never say "I've never even heard of that kind of cancer", and have a whole arsenal of treatment options after TCSC told me there was nothing left for me.

I feel humbled, hopeful, and eternally thankful to be given this opportunity.

So, place your bets now: Will the airline find my chair? If they don't, how long will it actually take them to purchase a replacement? (I'm not holding my breath on the "five day" guarantee.) Oh, well, the great Leming adventures continue, and here's hoping there will be many, many more!

:-) Sharon

P.S. -- Tune in next time, when you'll hear Don say, "No, I am not going to cross six lanes of rush-hour L.A. traffic to take you to that donut shop!"

Sounds Good To Me

Well, I am certainly no expert in reading CT scans (although I've spent more time than I want to admit staring desperately at the images on the CD from the lab willing myself to understand what all of those shadowy regions and white spots mean). The woman working at the lab actually told me that I needed to deliver the results to my doctor's office in the sealed envelope she gave me. I smiled politely, thanked her, and then waited until the elevator doors closed in front of us to rip open the report. Hey -- it's my body! After reading, I have to say that the latest results seem like good news to me.

Here's an excerpt from the report: "There is no abnormality identified within the visualized portions of bowel. There is no apparent abnormality of the liver, spleen, pancreas, or aorta. There are multiple nodules within the kidneys and gallbladder, consistent with metastatic disease, not significantly changed since the previous exam. There are extensive metastases in the neck, chest, abdomen, and pelvis as described above. Overall, there is little, if any, change since the previous exam, though there are a couple of masses, which appear to be minimally increased in size."

So -- remember that the goal with Yondelis (and many chemos for leiomyosarcoma) is STABILITY rather than shrinkage. I guess the $20,000 question is whether the slight growth of a couple of tumors will be viewed as a contraindication to continuing the Yondelis. I really don't see how we could have asked for or expected a better report than this. Of course, I won't know for sure until I hear the doctor's view of the CT scan results.

Don and I will be traveling again on Sunday. At least we certainly hope that we will be flying that day. Our first flight (through Houston) was cancelled because of Hurricane Ike, so they booked us on a later flight -- BUT it's still through Houston! Hopefully the storm will pass quickly (and without the predicted ferocity and devastation), and everyone will be safe in Texas and the Gulf areas. I should probably be packing, but instead I am working on the lap quilt I am making for Ariel. It's a "practice" quilt for the full-sized ones I want to make. I am machine-quilting it to become better acquainted with my new machine. All I lack is the binding, and I have started it twice only to remove the stitching because the needle moves so much on the decorative stitches, so the needle moves a lot and it's hard to keep the trim taut and feed it through perfectly straight. I'm SO tempted to hand-stitch with a neat little backstitch, but that would defeat the purpose of learning to quilt by machine.

I've been noticing lately that the signs of autumn are in the air. The first few leaves are falling off of the sugar maples down the street, the pool is drained and closed for the season, and the dry, stale air seems somehow less inviting than the warm green of spring or the humid heat of summer. There is a vague longing rooted deep in the fall of the year that always makes me sorrow for another time and place -- not a specific time and place, just one that is far away and gone forever. I've always been a deep thinker, somewhat of a worrier, and a hopelessly sensitive soul, so I guess it is only natural that I have always identified with changeable autumn more than any other season. Still, I am starting to understand why older people are often so averse to change. After a while, it's just tiresome, and I find myself wishing that things could just stay the same for once. (I know, I know: that's called a "comfort zone", which is really just a euphemism for A RUT.)

And no, I don't want to live only in my comfort zone, because that isn't really LIVING at all. I still want to be able to learn new things, and see new places, and blaze new trails in the thick wilderness of my life. Hopefully, the Yondelis will give me that stability -- and the precious time -- I need to do just that.

:-) Sharon

One Thing Leads to Another

Don and I celebrated our 17th wedding anniversary today. We went out for lunch and then shared a cake with the kids here at home. Luckily, my appetite has returned so food is actually fun again.

Last week was an interesting week. I started the week feeling terrible and ended it in the hospital. On Wednesday evening, I was having severe chest pain that started in my back and felt like someone was stabbing a knife through to my chest. After a slew of tests at the emergency room (EKG, blood work, CT, CXR), I was admitted because my EKG was abnormal. When I saw my cardiologist on Thursday, he ordered a chemical stress test to look for a blockage. Fortunately, there is no blockage. Unfortunately, this most likely means that the adriamycin has done some mild damage to my heart muscle. Will it get worse? There's no way to know at this point. It will need to be monitored closely for progression. In the meantime, I can continue my current chemo plan.

SO -- tomorrow morning, I will have CT scans beginning at 9 a.m. I say "beginning", because by the time I check in, drink barium, get an IV for dye, and actually have the scans, it will be tomorrow afternoon. These results will go to California, and next week we will find out if this treatment has been effective or if we have reached another dead end in this great and confusing maze, otherwise known as my life.

I am feeling stronger than I have since the last treatment, and surprisingly optimistic. I might as well keep the hope alive for right now. But I have to admit that the chest pain really frightened me. Sometimes it feels like I am hanging by one fragile thread, and a stiff wind or even an untimely breeze might send me spiraling into the abyss. It's hard NOT to be afraid, especially when I am physically very weak and weary.

Once in a while, I indulge in the fantasy of what my life would be like if one day, one glorious day, the cancer was gone and I could lay claim to my life again. I dream of the things I could do, of the the good I would do for the world, of the things I have lost that might be regained. I picture myself working, volunteering, driving, swimming, walking. It's a lovely, happy journey -- not a self-pitying one as it might seem, but one that is full of the unfettered hope of a child, the innocent belief that anything is possible. But then of course I am not a child, and I cannot waste a lot of precious time on pie-in-the-sky thinking. It's time to gird myself up for battle again, and to concentrate on finding peace WITHIN the battle rather than dreaming of life beyond it.

:-) Sharon

Fun with Food

Well, I am happy to report that I am finally feeling less nauseous today. I still don't have much of an appetite, so I am sticking to ye olde bland diet -- you know, BRAT, bananas, rice, applesauce, toast. I have to say, though, that rice is the last thing I want to visit (or re-visit, if you catch my drift) with my stomach when I am sick. So I guess mine is more like the BAT diet, huh?

Since my stomach is feeling a little more solid, I am less afraid of food and can "force" down a few healthy bites here and there. Hopefully this will help improve my strength and energy over the next few days.

And speaking of food, we are going to have to do some "damage control" at Zach's school after this week. First of all, I got a frantic phone call from the administration that he has been both collecting rocks at school and bringing them from home. His backpack was so heavy and full of rocks that they asked him not to bring or collect any more. He replied, "I can if I want to, and you can't stop me." Argh! Let the cosmic power struggle begin. I had become aware of the situation and had actually checked his backpack the next morning, but they found a rock -- a single rock -- in a side pocket and felt that this was a sign of outright defiance. Zach and I had a talk, and he reluctantly agreed to forgo the carrying of rocks in the backpack.

Second, I remembered late yesterday evening that today was Zach's turn to bring a snack for the class. I haven't shopped since we got home because we are organizing and cataloging the pantry this week, and I am making my list as we go. So, I called Autumn at work and asked her to stop by the store and pick up 24 of something for the class. You know, like peach cups or granola bars. When she came home at 11:30 p.m., she had purchased two boxes of GIGANTO Little Debbie Oatmeal Cakes -- more sugar than I would normally let Zach have in a full week. I'm sure the teacher was thrilled to see that snack coming to a room full of rowdy 4th graders. Maybe we will be rotated OFF of the snack list for a while ...

And so, ordinary life has resumed and marches onward -- and, thankfully, I am feeling a little better equipped to handle it.

:-) Sharon

Falling Out of the Sky

I'm still trying to land tonight, back in our own little world and yet I still feel oddly disconnected from it, not quite tuned-in, not quite ready to expend the effort it will require to be a functioning and productive member of society again.

The chemo effects left me much more miserable this time. The pain and soreness set in on Thursday, followed by the nausea, vomiting, fever, chills, and night sweats on Friday. At some point during the night Friday night, I remember lying in the center of the bed, completely naked because I couldn't bear the touch of anything against my skin. In the dark throes of my fever-induced haze, I felt like I was lying in the middle of a vast desert -- just a small, dark spot in the middle of the hot, dry sand. At that moment, I was keenly aware that I was suffering greatly, but not really aware of much else. There is a "fog" of sorts that I enter when the chemo overtakes me. It leaves me disjointed and mentally very sluggish. I roil there, miserable, for a few days; the re-awareness that follows isn't much friendlier, either. At some point, I feel acutely and desperately awful; slowly, that feeling is gradually replaced with a general unease, a restlessness that is powerful enough to make me very unsatisfied with lying around any longer, and yet holds no actual strength to propel me back into the world. I lie there, squinting at the hazy glow of the sun as it beats down upon my helplessless, and I realize that I must make the conscious effort to come back into reality. For some reason, I am just not inclined to do that yet.

Part of it is the physical exhaustion of it all, without a doubt. We make the grueling trip, followed by the days of treatment and the fun things we squeeze in while we are there, and then finally the long, hard fall down the shaft of the chemo's side effects, with another long day of travel waiting at the end of the week for us -- and then, reality. Home, where I long to be while I am away. Home, where things are expected of me and the calendar marches by, full of obligations and commitments. Home, where I am most instinctively alive.

Still, I just can't shake the underlying feeling that there is an innate desperation in the very act of traveling so far for treatments in the first place. Such a high price is paid -- financially, physically, emotionally; all of our hopes are bound up in the silent prayer that this is not all for naught, but that all of the misery will pay off when I have my scans next month and we will witness a miracle.

In a crazy way, it seems like the sicker I get, the more life requires of me. That, to me, also smacks of desperation and extremism. Should we just accept the inevitable, spare all of the money and the physical rigors of travel, and cut our losses? Would it be better to yield to the exhaustion and the pain and the fear, and simply allow myself to rest instead of pumping in the poisons, hoping for a cure? I'm starting to remind myself of people I have read about who sell everything and fly to a remote clinic in Mexico for one last hope of survival. Are we only kidding ourselves?

I don't know the answer, and it is a question that plagues me in the lingering fog of my tired mind. For right now, there is no answer, and I will have to settle for slipping into one-day-at-a-time mode until I am ready to ponder the deeper mysteries of the universe again.

It's great to be home ...

:-) Sharon

It's Time to Go Again ...

It's hard to believe, but Don and I are packing again tonight, preparing for our trip on Sunday. We were smart enough to buy a set of luggage that is more suitable for airline travel, so hopefully things will be easier inside the airport. And I am happy to report that our much-less-expensive hotel has a refrigerator in the room, so we will be able to keep healthy snacks and soft drinks that don't cost $7 for 10 ounces.

I have been feeling well this week, at least most of the time. My energy level seems to fluctuate greatly throughout the day, and I have been running a low-grade temperature every evening. Overall, I really can't complain about the side effects of yondelis.

The kids started school on Monday, so the preparations and adjustments to the new schedule have consumed most of our energies this week. With our quiet days, Don and I were able to clean the house, pay bills, run errands, and relax a little bit. They, on the other hand, are enjoying the new year and seeing their friends again. I am sorry that summer is over (for all practical purposes), but it's the natural order of things. One season rolls into another, and we are wise to embrace each one for its own beauty instead of longing for the one that just passed and can never be touched again.

In honor of our trip, I am including a few photos from our first trip to L.A. The first one above is my favorite one from the trip. We ate at a fun restaurant on the beach called Gladstones 4 Fish, and the meal was so delicious that we decided to sample their dessert menu. We ordered key lime pie, and they brought 1/2 of a pie. I ate about 2 bites, and Don tried to eat the rest of it, but couldn't eat it all. In the picture, Don is smiling at his piece of key lime pie. The second one, below was taken outside the restaurant by a woman passing by us at our request.

The final one is a photo of Don and me getting ready for our tour of Warner Brothers studio lot. He helped me into the wheelchair-accessible cart, and then he sat on the seat right in front of me. We were the only ones on that particular cart, except for our guide. We learned a lot about the filming process, and had a great time on the tour. After we returned to the gift shop, Don bought himself a Warner Brothers cap and a coffee cup. He also bought me a pen with a top that is shaped like the outline of Sylvester the cat's face, proudly announcing from the checkout counter, "Look, Honey, I bought you a Batman pen!"

-

I sure do love that man! And tonight, he and I are preparing for a new adventure. Stay tuned, dear friends ...

-

:-) Sharon

Peace in the Midst

I have been doing some thinking about how swiftly life has changed recently. It seems like only yesterday that we were counting down the days until our beach vacation. Now vacation seems like it was a million years ago, and even the super-busy days of May and June seem simpler than the current ones. Now our already-crazy life has taken a turn for the even-more-complicated. Not only do I have to maneuver day-to-day life with cancer, messy house, kids who are exactly 82 ½ hours away from catching the school bus for their first full day (don’t even ask me how I know that), finances, van in the repair shop, and all the trappings of regular life – I also have to manage to fit a cross-country trip into our schedule every few weeks. I am NOT complaining because I KNOW how lucky I am to have a new treatment option. I guess I’m just feeling overwhelmed and a little bit frightened. How thin can I spread my energies and still keep functioning? Travel is VERY challenging for me. Remember the great Philadelphia caper, when I single-handedly derailed the trolley tour? And then there were the beach house meltdowns, and the tears in the Cleveland airport because my back was hurting and I couldn’t roll myself another inch but the gate was still nowhere in sight …

I know what you are thinking, and you are right. I should concentrate on ONE day at a time, instead of obsessing about things that haven’t happened yet. If I am given the blessed gift of time, then we will worry about each trip as it comes.

I have a confession: I’ve been thinking a lot about death lately. Not about the actual process of it, but just the whole concept of how we start out in this world as innocent babies, learn to walk and talk and read and write and work and play and love and hate and make our own way in the world and acquire houses and lands and cars and STUFF of all sorts – only to die, leaving only the lives we have touched as our legacy, and our beloved pile of stuff to be sorted and divided amongst the living. And all of our knowledge, our experience, our gifts, and our flaws go down into the ground with us and are gone forever. It seems so hollow, somehow, so … worthless, in a way. What does it matter if we are rich or poor? Pretty or ugly? Smart or not-so-smart? Death is the great equalizer -- except, of course, for the fact that not all lives are equal in length.

There is so much sorrow fraught up in the business of living. And yet, I long to be here for it. Sometimes I feel that we are never so much alive as we are in midst of great struggle; our adrenaline is pumping and our senses are heightened and our hearts are deepened and it is only after the storm has passed that we can truly appreciate the smallest, tiniest blessings of life -- like breathing in the sweet air after the rain has passed through and cooled the searing heat enough for us to sit outside with a glass of tea and the nightly newspaper. And even though my body is tired and broken-down from the length and depth and width of my long battle, I don’t want to have a bitter soul. I want to celebrate those moments when I am not sick and not hurting, and I want to hide them in my heart to cling to when I am fighting. After all, life is made up of moments, and that’s the way I need to live it – not worrying about the future (which may or may not come), but savoring those little snatches of time when all is beautiful and peaceful and as calm as a quiet summer evening after a storm.

:-) Sharon

Still in the Game

Hello again! I have been working on a long blog post (since I know you all want to hear me go on and on about things -- haha!), but I can't seem to finish it so here is a brief update of the week.

We arrived home late Sunday evening after a very adventurous travel day. I was utterly exhausted on Monday, desperately tired and quite sick on Tuesday, and flat as a pancake on Wednesday, so yesterday was my first productive day this week. This is not a good thing, because I really needed to swing into action when I got home to get the kids ready for back-to-school, balance the checkbook, sort and file all the mail that came while we were away, collect all of my coupons for the grocery store's exceedingly rare "triple coupon week", clean the much-neglected house, and -- in a new bombshell from the L.A. doctor's office -- accumulate ALL of my medical records from my eight-year battle. Just to give you some idea of the magnitude of this task, here's an overview of what I will need:

• Records from more than TWO DOZEN doctors.
• Records from FIVE different hospitals for SIXTEEN surgeries and more than a DOZEN multi-day inpatient hospital stays.
• Records for all of my chemo treatments - SIX full cycles and a couple of partial cycles of Gemzar/Taxotere, ONE cycle of AIM, and THREE cycles of adriamycin.
• Radiation oncology records for my FORTY-FIVE radiation treatments.
• Test results of all sorts, including mountains of bloodwork, x-rays, CT scans, MRIs, bone scans, spinal tap, GI studies, EEGs, EKGs, and ultrasounds.
• Home health and physical therapy records.
• Cytology reports from all tumors and biopsies.

Can you imagine trying to gather all of this information together? They are going to perform the monumental task of preparing a research study of the sum total of all of my treatments in the interest of developing better game plans for (a) me, and (b) future patients.

So, do you want to know what I did when I finally mustered up a few ounces of energy and wherewithal? Did I balance that checkbook or scrub a toilet? Nope. I cut out a quilt. I know, I know. A million things need to be done, and I am cutting out a quilt. But, as I said in justification to Don, it was the only thing I WANTED to do. I purchased the fabrics just before our trip for my first full-sized quilt project. I have always wanted to make a blue and yellow double Irish chain quilt. The combination of fabrics is just beautiful! I am working on my sample blocks now.

I know that my time would have been better spent on my to-do list, and I did manage to eventually knock quite a few items off of the list, in spite of a spate of unexpected visitors on Thursday AND the sudden demise of our hot water heater, which flooded our basement on the same day. I have now balanced the unwieldy checkbook, took my giant collection of coupons to the grocery store, cleaned the house to a more presentable degree, and dealt with the mail that needed responses. Still, my mind keeps going back to that stack of quilt squares, waiting for me in the sewing basket. As you know, I want to sew a full-sized quilt for each of our nine children before I -- while I'm -- oh, you know what I mean!

As I completed my 3-hour, 2-cart journey through the grocery store this afternoon, it occurred to me that I am still very much a player in the game of life. My greatest wish throughout all of this long ordeal has been that I continue living with the ordinary stuff of life. The fact that I am still here is an extraordinary gift that I try my best not to take lightly.

:-) Sharon

P.S. -- Mary from the airplane! It was great to hear from you again! Please e-mail me if you can so that I can have a way to contact you.

P.P.S. -- Pat from the grocery store! It was so nice to meet you today, and I look forward to getting together some time soon.

(See, folks, there are advantages to having your name written in giant Sharpie letters on the back of your wheelchair.)

Heading Home ...

Tomorrow Don and I will be flying home from Los Angeles. It has been an exciting trip, and hopefully a productive trip. We will know in about six weeks if the Yondelis is going to work for me. So far, the only side effects I have noticed is extreme tiredness in the past 24 hours -- which is probably related to all of our activities as well as the actual treatment.

At any rate, we are packing our bags now in preparation of tomorrow's long traveling day. We have truly enjoyed L.A., but there is something so comforting about the fact that we are finally going home to our family, to our house, to our own little place in the world.

I am so thankful for the opportunity I have been given to meet with sarcoma specialists and to try another chemo. I feel humbled by all of the assistance offered by friends, family, strangers -- and hopeful that maybe, just maybe, I haven't reached the end of my beautiful journey just yet.

:-) Sharon

Drinking Up the Sea

Hello again! The chemo called Yondelis is flowing through my veins tonight, and I am very hopeful that (a) it will work, and (b) I will be able to manage the side effects.

I am glad that you enjoyed hearing about our “great snack caper” yesterday when we were determined to discreetly carry our own snacks into our lavish hotel. After all, we can’t exactly slip in incognito – me with my ghost white skin and obviously bald head shielded by my white head wrap in my poor old worn-out wheelchair with the foam coming out of the armrests, and dear old Don behind me, pushing my chair with one hand while he dutifully dragged our hastily-purchased backpack with the tags still on it through the luxurious lobby toward the elevators, only to be intercepted by an overzealous concierge clerk, who had to wonder what on earth was in the heavy bag.

I don’t if I have ever really confessed this online, but I am queen of cheap. Because of this, it is simply impossible for me to justify the constant outlaying of cash that accompanies such an upscale establishment as this one. I mean, I will only purchase shampoo and toothpaste when I can get it free with discounts and coupons. I, buy leftover Halloween candy for the Christmas stockings and clearanced Christmas candy for the Easter baskets. Why, I won’t even buy my prescription eyeglasses from 39dollars.com until I have a coupon code for an additional savings!

I am happy to report that I am feeling well so far. After my portable chemo infusion was activated this afternoon, Don and I headed up toward Malibu to a seafood restaurant right on the beach. As we ate, I took great pleasure in watching the seagulls as they swooped and foraged for food. I know that they are basically scavengers, but they are such a symbol to me of life by the sea that I can’t help but smile as I watch them. There is actually a group of seagulls that lives in Morristown, in a parking lot on the other end of town. (The site used to be the Hamblen County fairgrounds, but years ago it was converted to a shopping center, and now they also host antique car shows there on summer weekends). I also feel a sadness borne of longing when I see them – their yearning (or is it mine?) to reach the sea again, to breathe the salt air and perch in the golden sand. There is a universal sorrow that springs up from being far from where one is meant to be, and I always think of that when I see them. To me, they represent sand and sea and the free-est and happiest of days. (To Don, on the other hand, they are an unwelcome reminder of that unfortunate bird-poop-on-the-head incident on the Hatteras/Ocracoke ferry a few summers ago …)

This evening, we met up with Phuong and Sherman, both former AI contenders and very talented, wonderful people. We went to dinner at a nearby restaurant, where I ate a delicious bowl of white bean and chicken chili. So far, my appetite is doing fairly well, my energy is decent, and my outlook is optimistic and hopeful. Even though I now that there is a chance that this chemo won’t work, at least we are trying something. Also, the doctor made it clear that there are other options, too, in the event this one does not work – AND we will know in three or four weeks, which means we won’t be wasting precious months of time evaluating its efficacy. With a plan in place (and in action), I feel much less helpless than I do when the cancer is allowed, unabated, to grow and proliferate within me. Left to its own devices, we know what the cancer is capable of doing. It is exciting to be back in the saddle, girded up with my battle armor, ready to fight and try and hope – and LIVE!

:-) Sharon

P.S. – Since my mouth/tongue surgery last October, I have not been able to eat cheese balls or chips of any kind because they hurt my mouth. M&Ms, well … but I am also eating lots of fresh fruit and vegetables, taking the supplements that the doctor’s office recommends, and very carefully keeping my sugar in check since I am diabetic. You are absolutely right to point out that the battle must also be found on the nutritional level, and I appreciate you caring enough to vocalize that to me.

A Drop of Kindness ...

I have realized on this trip how very important it is to be kind and helpful to other people as often as I can. The kindness of family, friends, public workers, and even strangers have been a great comfort and encouragement to me on this journey.

Don and I traveled all day yesterday, nearly 14 hours from home to hotel. It was definitely an adventure for me, especially the aisle chairs on the airplane. Since the aisle is so narrow, neither a standard wheelchair nor a standard walker (not that I could use one anyway at this point) will fit. So the airlines use a contraption called an aisle chair - a narrow, uncomfortable chair without arms to which you are strapped at shoulders, knees, and ankles. Once you have transferred from your own chair to this tiny atrocity, they pull you - well, actually, the aisles are so narrow that they more of less yank you as you bump, bump, bump each set of arm rests - until you reach your row, then they unstrap you, lift the arm rest, and you slide over onto your seat. On our longer flight to L.A., we were on the 28th row of the airplane, so it was a long, bumpy ride. Getting off the plane is even more difficult, because it is harder to shove the aisle chair forward, and it tends to turn off-course very often, bruising arms or side or knees or whatever unlucky body part is in its way.

Speaking of seats, I had a great deal of paranoia about flying because I have gained weight since I last flew nearly 11 years ago. I have read horror stories about people being required to purchase 2 seats because they can't fit into one. I can't even imagine how I would ever explain it to Josiah's management, who booked my flight, that I am going to need two seats because my butt won't fit. In classic "me" fashion, I obsessed about it for days, measuring my hips over and over against the surface of chair and bed and wheelchair, wondering if I would fit. Leave it to me to worry, not about the plane falling out of the sky, but about being too wide to fit a single seat and having to face the public humiliation that would accompany such a proclamation! I am happy to report, by the way, that I did indeed fit into one seat, and didn't even need a seat belt extension to do so. It reminds me of one of my favorite quotes: "Don't tell me that worrying doesn't work, because the things I worry about the most don't happen!" Haha! I don't know the author, but it fits me perfectly.

I've rambled off-topic, as usual. I was trying to tell you that we have met and been helped by the nicest people on this trip. Some, like the airline employees assigned to drag me up and down the plane aisles, were just doing their job. Still - there is a difference between a job done professionally and a job done both professionally AND compassionately. Everyone, from the airline attendants to the aisle-chair-crew, went out of their way to help me. And there were others, too, like the nice woman who shared our cramped, three-seat row from Cleveland to L.A. with both the two of us and her young son on her lap. They were returning home from a cross-country visit to relatives, yet she took the time to help us find our luggage and to make sure that the rental car shuttle was handicap-accessible. Then there are those of you -- you know who you are -- who are funding carry-in dinners for the kids each night. They are really enjoying the nightly feasts from that generosity. And last, but not least, our dear son and his connections, have funded the trip for us and placed us the nicest hotel I have ever seen! Also, your prayers are greatly appreciated. Today I was sitting at lunch, just before the appointment, trying to fight back the tears of dread and doubt (What if we are turned away? What if even the experts have nothing to offer us?) ... As we left, a woman slipped us a note. When I opened it, it was a note of encouragement from this complete stranger. She could see that I must be battling cancer, and she wished me well and hoped that I would find strength and courage for the fight. Since they were not sitting near us, there is no way she could have overheard my fears as I voiced them to Don. It was, simply, a random act of kindness that brought tears to my eyes and hope back into my hesitant heart.

I am happy now to report that the doctor we saw today DID offer us some hope, in the form of a new chemo known as Yondelis. The clinical trials have been completed for it, and it has received approval in Europe, but FDA approval is still in the works. Because of this, the manufacturer will provide it free for "compassionate use". My insurance will cover the lab work-ups, doctor's visits, etc.

I am familiar with Yondelis from the LMS list on the internet. There are a number of people with leiomyosarcoma who have achieved good stability with it. I had my blood workup and a Zometa shot (for my bones) today, and I will begin the chemo tomorrow. After pre-meds, they will begin a 24-hour drip, and I will keep the portable pump with me until Wednesday, then go to have it disconnected from my port. In three weeks, I will return to L.A. to see if it is working. Side effects? While it is less toxic than my previous chemos, it IS still a chemo, so there might be nausea, vomiting, and so on. Less common (and more troublesome) are usually-reversible damage to the liver or kidneys.

We really, really like this doctor. He is very compassionate and extremely knowledgeable about sarcomas. I nearly cried when another patient in the waiting room mentioned that is battling a very similar sarcoma. It was the first time I have ever run into another sarcoma patient during treatment.

I know that this is already a long post, but I want to share a funny story from today. Don and I have never stayed at such a nice (read: expensive) hotel prior to now. Needless to say, we are a little shell-shocked at the cost of things here, like $7 for a 10-ounce soft drink and $5 for a snack bag of potato chips. Since I am such a frugal soul (read: cheapskate), I decided to locate a Wal-mart to purchase some drinks and snacks for the room. After my very long doctor's appointment ended, we fired up the Garmin and headed north to the nearest one. Unfortunately, that one turned out to be in a very questionable part of town, without any visible accessible parking, so I checked and found another one 5 miles further north.

When we finally arrived at our destination, we discovered that it was not a Wal-mart at all, but a Sam's Club. Of course, I love Sam's Club. It is great for a large family, and I get a big kick out of all of the giant-sized things. (But, honey, we NEED 15 pounds of cheese balls ...) But today, we were now faced with a dilemma: how in the world could we sneak our giant stash into the Four Seasons in Beverly Hills? I couldn't just pile it on my lap and roll right through the lobby with it. It would have been hard enough with smaller sizes in Wal-mart bags, but everything at Sam's is extra-large, and they don't even give you bags to put it in. So, we commenced a search throughout the store for something that would allow us to stow the stash and sneak it in with us incognito to our hotel room. An exhaustive search for duffel bags or small luggage came up empty. I tried thinking "out of the box": sleeping bag? small tent? I mean, our room IS big enough to camp in... After Don gave me his best "you've got to be kidding" look, I stumbled upon the perfect solution: a backpack. Now, this was not just any backpack. This was a hiking/deep woods camping backpack made by the company who invented Swiss Army knives. (Because, after all, what back-country camper doesn't need a case of diet soft drinks, a 3 1/2 pound bag of M&Ms, 2 pounds of tortilla chips, a 3-pack of chip dip, 500 Os-cal tablets - doctor's orders, and an enormous spray-bottle of sunscreen?)

We made our purchases and then, there in the parking lot beside our rental car, we loaded the mammoth backpack with our enormous goodies and returned to the hotel without fear of embarrassment. (Well, I DID still have my Taco Bell bag hidden under my sweater ...) When the valet offered to take the bag for us, I realized that the large price/description tag was still hanging from it. I'm sure the poor guy is still wondering what we plan to do with the body we are hiding in that heavy bag!

Oh, well, life IS an adventure. And it is one made both kinder and gentler by all of you who have helped us, supported us, prayed for us, or even just hoped with us that a new treatment plan could be made. I vow that I will be as kind to others as all of you have been to me, and pray that I live long enough to fulfill that promise many, many times.

:-) Sharon

Indulge Me ...

Here's one more from the Leming archives. I found this photograph today, while we were sorting through the broken-closet-rod disaster. Our bedroom closet rod broke, which caused the top shelf to flip and dump the contents on the floor. The silver lining in all of this is that Don found this long-lost photo. I searched in vain for it in the basement when we cleaned down there a few weeks ago, and I thought that it had probably been ruined along with a lot of other pictures and mementos when our heat pump unit leaked.

The picture was taken for a church directory in September 1991, just a day or two after Don and I were married. I was 23 years old, and Don was 32. Autumn, Josiah, and Andrew were 1, 2, and 3 years old. Autumn is reaching out for the camera.

Oh, how I dream of, how I long for those days, when I was young and fresh-faced and the kids were right there with us. We had such fun when they were young. I absolutely adored them and devoted much of my energy to them. I had made many mistakes in my early adult years, and yet one of the biggest mistakes (a foolish marriage) also provided me with the best gift of all: three beautiful children. I was determined that they would not suffer because of my poor choices. I grieved for the thought of them being raised without a dad after my divorce, but I was certain that I would never find a man that I trusted with my kids. Then I met Don on a blind double date (the bright idea of a friend of me), and the rest is history. I was skeptical and even a little difficult at first, but Don was so patient and so kind and so gentle that I just couldn't help but fall in love with him. It was undeniably the best decision I have ever made. I have always told Don that I believe that God was looking down at us and smiling on the night we met.

-

I am thankful for every single day that we have spent together. Every morning when I wake up, I breathe a prayer of thanks for another day to spend with him and with all of our children, and then I beg for just few more ...

-

:-) Sharon
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P.S. -- Another appointment! I will see Dr. Chawla, head of sarcoma clinical trials for UCLA, on Monday, 7/21. It looks like we will be flying to L.A. on Sunday, 7/20, and staying for one week unless I need to be there longer for tests or treatment. We are still working on an appointment with an orthopedic surgeon.

Worth a Thousand Words

I was looking through some of my favorite beach pics tonight, and I thought I would share a few of them with you.

There are simply no words to describe how much I love this man.

Precious moments with Andrew and Josiah

Here I am at the top of world after climbing the stairs from the beach to the deck.(Ignorance is bliss, I suppose.)

The whole motley Leming crew

Normalizing (and celebrating) the absurd: Andrew and Josiah join me for my "picnic on the floor".

Sisters unwind after the kids are in bed. It was the first time that all five of us had ever been to the beach at the same time.

__________________________________________

When Don and I ran errands yesterday afternoon, we stopped in at our favorite local restaurant for lunch. An older woman sitting near us (and I guess noticing my headwrap and wheelchair and realizing I was a cancer patient) said to us, "I'll bet you all are here celebrating good news!" Don and I exchanged glances, and I replied, "Why, yes, as a matter of fact, we ARE celebrating today."

Because, the fact is, we ARE celebrating today -- and every day that God is kind enough to lend us. I don't want us all to lose sight of the fact that so far, I AM still alive and still fighting and still enjoying my life and my family.

No one is given any promise of tomorrow, so let's all celebrate TODAY.

:-) Sharon

Still Swimming (well, not literally, but you know what I mean)

Hello, again! Wow, I am humbled and thankful by the outpouring of love, support, and positive thoughts from all of you. It means a lot to me to know that there are people cheering for me.

I confess! On Friday after my appointment I felt a great deal of panic combined with an underlying current of hopelessness. It seemed like the cancer had grown so suddenly, and spread so mercilessly. Once I calmed down, and thought about it some more, I realized that we are actually talking about SIX MONTHS of growth. Because the chemo did not work, the cancer continued to grow. This is not shocking news. We had simply hoped that the chemo WOULD work, and that I would get shrinkage or at least stabilization.

The hardest part of the news to bear is the devastating bone erosion in my left hip. If it breaks before some sort of intervention takes place, whether it be chemo or radiation or some type of radical surgery, I will be bedridden again. Bedridden, as in hospital bed with the cheap plastic mattress in the living room. No more sleeping in my own bed, no coupon trips to CVS, no showers, no dinners out with friends. Bedridden. Ordinarily, that is the treatment for a fracture of the inferior pubic ramus. They order bedrest until the bone heals. Unfortunately, as long as there is cancer in the hip, it will NOT heal and I will be stuck with the terrible pain and the loss of my beloved mobility.

Anyway, enough of my fears and phobias! I actually am blogging tonight with some good news: I will be traveling to California next week to see a sarcoma specialist, Dr. Charles Forscher at Cedars-Sinai. My appointment is on Thursday, July 24th. We haven't made travel arrangements yet, so I don't have any more details, but at least we have a plan! We will also be seeing the radiation oncologist on Thursday of this week, to discuss whether radiation to the hip would be beneficial or disastrous. (Radiation weakens bones, so if the hip is already very weak and near breaking, it might not be a good idea.)

Please pray for me as we finalize our plans. I want all of you to know that I haven't given up, haven't stopped fighting. I haven't abandoned all hope for a future of LIVING with cancer, or maybe someday even living without it again ... I know it's a long-shot, but that's the wonderful thing about hope. It doesn't have to be grounded in any kind of reality or proven by any precedence. Sometimes it's just the faintest flicker of light in the deepest of night, reminding us that miracles CAN happen, that life IS worth living, and that we can survive things we never thought possible if we just set our sights on that tiny light instead of surrendering to the darkness.

:-) Sharon

The News is Not Good

I will post my reactions later, but for right now here are the results from our doctor's visit today:

• The inferior rami (bone) in my left hip has eroded, and is in great danger of breaking at any time. He recommends that I put absolutely no weight or pressure on it (which is basically impossible since I do not have full use of my right leg, either).
• The tumors on my scalp and inside the lining of my skull have grown and multiplied.
• The lung tumors have grown and multiplied.
• There is extensive spread of the subcutaneous nodules throughout my chest wall, arm muscles, and retroperitonal areas.
• The adrenal gland tumor has become more prominent.
• The cancer has now invaded my liver and right kidney.

He very gently recommended Hospice, but when that was too difficult for my family (Don, Dad and Virginia, Mom) to hear, he offered to refer me to M.D. Anderson hospital in Houston, which is world-renowned for its sarcoma treatment expertise. He is going to make the referral, and hopefully I can be seen there in 7 - 10 days. My family is adamant that this is only a stepping stone to the next phase of my battle, but it is still painfully obvious to all involved that the handwriting is on the wall.

I am certain that I will have much to say about all of this in the coming days and hours, but right now I am feeling rather numb. Please pray for us.

:-) Sharon

P.S. -- I am eternally grateful that we had our vacation before we learned the latest news. Check out the photos page for beach pictures. I uploaded some last night, and will add more as time allows.

Marathon of Tests

Today was a marathon of tests. We were gone from the house from 9:30 this morning until 7:30 this evening. I had bloodwork, CT scans, chest x-rays, and the much-dreaded MRI. (The last time I had one, it took 3 tries because I was so frightened.) Other than just being downright tiresome, the day went well. My only major difficulty was vomiting between rounds of the MRI. The technician brought me out of the machine to inject the dye, and the nausea swelled up without warning -- a combination, I suppose, of nothing-to-eat-or-drink-after-midnight, berry-flavored barium, CT contrast dye, MRI contrast dye, fear of the MRI, and physical exhaustion. I was so relieved to get the tests and the hospital trip behind me. Don and I celebrated with a nice, quiet dinner before driving home. In spite of my mouth sores, my appetite cooperated well and I was able to eat most of my dinner for a change.

Thanks to everyone who sent me messages, called to wish me smooth sailing for the tests today, or offered up prayers on my behalf. I am actually feeling much better today, although I suspect it will take a few more days to quell the exhaustion. Sleeping in my own bed last night (with my oxygen machine that I missed so much during the trip) was a nice comfort to me. My chair is a welcome friend, too, and hopefully will help the swelling subside in my giant foot. It's so big right now that I can barely squeeze on a shoe over it.

I am going to concentrate for the next little while on getting life back to a normal routine for all of us, with a focus on taking care of myself with regular meals and rest and time to relax and savor all of the great things about summer. I haven't been to the pool in several weeks, because I didn't feel well after chemo and then things were just so busy. And yes, I have forgiven myself for my emotional outbursts on the trip. After all, I am trying to navigate a difficult and treacherous journey into the valley of the shadow of death. There are no road maps in the land where I tread, and rare is the soul who makes it out to offer any advice to the rest of us who walk this lonely path. I can't prepare myself ahead of time for everything that I am going to feel or how I am going to react to the simplest of things, like photographs of my family without me in them. Sorrow and grief IS part of my journey, just as darkness and shadows are part of the light. It is a necessary, albeit sometimes inconvenient, part of my life with cancer.

:-) Sharon

Til Human Voices Wake Us

We are home tonight from the beach. Right now I feel exhausted and just a little bit lost, yet relieved at the same time to be home in my chair with my giant foot propped up and the normal sounds of the television and someone playing a guitar and the fan blowing and my fingers clacking on the laptop as I write this message. I am thankful for the quiet, familiar, frenetic energy of home.

Our vacation was a wonderful glimpse of paradise in so many ways. We had an incredible view of the ocean from the large windows on the main level, and dolphins played just off shore while the pelicans hovered over the water in hopes of finding a fish. The ocean was as large and as majestic and as healing as ever, reminding me of the bigness of God and the smallness of me. Josiah was with us, calling me "Momma" and making us all laugh in spite of his fierce sunburn. The kids dug holes and buried each other in the sand and splashed in the salty surf, and when we were not on the beach we shopped for souvenirs in air-conditioned stores that sell boogie boards and flip flops, salt-water taffy and coffee cups, t-shirts and wind chimes and long strands of shells that spin in the breeze.

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I often use the analogy of a roller coaster when talking about my life. Never has it been a more fitting image than this week. There were the highest of highs -- my reunion with Josiah at the airport and the unbridled joy of watching him here and there all week, sharing a cold popsicle with my baby niece, sitting on the beach by the ocean with my whole family frolicking around me, triumphantly tackling the 17 steep steps back up to the boardwalk; there were also the lowest of lows, dark tunnels of which I am loathe to speak. For some reason, I simply could not seem to control my emotions. I cried without warning, lost my temper irrationally, and openly bemoaned the fact that I felt left out of so many activities due to my physical limitations. My family, accustomed to comforting themselves with the fallacy that I am strong and have gracefully accepted my situation, was totally flipped out and took to avoiding me -- which only heightened my feelings of loneliness and abandonment. There were hurtful words exchanged, and I don't know what amount of damage control will be required to pick up the pieces, or if I even WANT to make amends if they can't accept the fact that I am gravely ill and let me FEEL and EXPRESS the pain of it betimes without trying to hide under a plastic smile.

At the same time, I am frightened by my own emotional volatility at this point. It feels like a monster has been unleashed inside of me -- a misshapen, feverish beast borne of pain, fear, loss, helplessness, anguish, and downright fury at my lot in life. I have kept this thing inside of me for so very long, carefully it shoving it down into its box whenever anyone was near, never daring to even admit its presence even to myself. Unfortunately, it has grown to the point that the latch no longer holds it. Like a jack-in-the-box wound one time too many by a child who is supposed to be putting his toys away, it roars to the surface without warning and always at the worst possible moment. I am embarrassed and ashamed about my loss of control. I think I might be a little depressed.

I hope that you will understand that for now the beach pictures are just too painful for me to view or share. They are a snapshot of the purest of happiness, of bliss and relaxation, of sun and sand and sea -- and yet, they are also a painful reminder of the fact that vacation is over and that our beloved son Josiah is on a plane headed for London and that nothing in our lives, good or bad, lasts for very long. When I am feeling a little stronger, I will treasure them and the memories they hold of my whole family gathered together in that beautiful house by the sea -- and I will console myself with the knowledge that nothing, and no one, is ever really gone if they live in our memories and in our hearts.

:-) Sharon

Deepest Chambers of the Sea

Well, as you know, this post finds me on vacation. It seems unfair to fail to mention all of the great things that have happened in the past week: Don's parents and their lovely anniversary party, Lacey's 18th birthday, the first day of summer. Unfortunately, it was tempered with some very difficult moments, of which I will reserve explanation for another blog.

We left our house at 9 a.m. Saturday morning -- or I guess I should say, we TRIED to leave our house at that time. "Hey kids," I said happily, "Wave good-bye to the house!" "Good-bye, house," they echoed excitedly. Don turned the key to start the van and -- NOTHING. He tried again -- UH-OH. The van was packed so tightly with people and stuff that you couldn't possibly shove a toothpick in with us, and now it would not start. To make a long story short, we called Autumn back to the house to jump the battery, then had a picnic of sausage biscuits and orange juice on the Auto Zone parking lot while Don purchased and changed the battery. (Note to self: No celebration until we actually LEAVE the house next time!)

The trip went well, all things considered. The hotel was equipped with an indoor pool for the kids and wonderful handicap-accessible roll-in shower (complete with fold-down shower seat!) for me. I sat on the bench for a long time, letting the warm water flow over me. Today passed in a whirlwind of travel. The kids traveled very well, with very few difficulties (unless you count convincing Zach that he could NOT bring a piece of bacon from the restaurant in the his pocket to "feed the fish"). We arrived at the house around 3:00, looked around, and then Don and I headed up to the airport to get Josiah. I was so happy to see him that I couldn't stop crying. The airport was a couple of hours away, and his flight was delayed, and Don took an unplanned detour on the trip home. It was 10 p.m. by the time we got back to the house.

By this time I was hungry and exhausted, but still determined to see everyone who arrived after we left for the airport. Eagerly, I sat down on the bottom step of the lowest level of the house, where our bedroom for the week is located, and began the slow, agonizing scoot-and-pull routine to get up the steps to the main level of the house. As I reached the top section of the curved staircase, my strength began to fail me. Two days of hectic travel and the week of non-stop preparations finally got to me, and I sat there exhausted, unable to go any further. Andrew and Josiah were below me on the steps, looking up in horror as I tried and failed to pull myself up another step. Above me, Mom and Aunt Mim fought back tears from the kitchen table as they watched my struggle. Desperately, I willed myself up the last two steps and dragged myself across the carpeted floor to the landing where I tried in vain to pull myself up to get in my chair. Josiah and Andrew finally joined me on the floor, helping as usual to normalize the absurdity of my life. Amy even snapped pictures of us smiling from the floor. Someone brought me a drink and a piece of pizza. Later, when I finally found my second wind, Don and Tabitha helped pull me up to get in my chair.

No one spoke out loud about my public humiliation, but I'm sure it will be the subject of many whispered conversations henceforth. I found myself wishing (like so many times in my life) that I could just be invisible. Then no one would have to see me dragging myself up steps or pulling my useless leg across the floor just to be with everyone else. Maybe I could I just be a spirit, and that way I could float effortlessly from floor to floor or down to the ocean like everyone else -- or a delicate butterfly, so they could smile as they watch my colorful flight from room to room. Instead, there I was, trying hard not to cry in front of my whole family tree who have assembled here for a vacation, not a circus side show. (Come, see the bald-headed woman with the tumors on her head as she makes her way up the carpeted steps to the main level of the house. It's horrifying! It's amazing! I promise you, you've never seen anything like this before ... only $2 to see the crazy woman butt-scoot up the stairs!)

Later, when they gathered on the screened porch to listen to Josiah's songs, I watched them for a while through the glass door. I wanted to memorize them in their happy repose for later, when life intervenes and scatters us all again. While the final strains of "Believe in Heaven" played, I returned, alone, to the steps and dropped quickly to the floor so that no one would have to witness my equally agonizing descent. Down, down, down to the ground level floor I scooted, to where I could hide in my bedroom for a good, long cry about the sorrow of children growing up, life winding down, and the extraordinary struggle that my body requires to do things that everyone else takes for granted.

Still, I am here, and the view from the level above me is utterly breathtaking. Like all the beautiful things in my life, it is worth the struggle to see it -- to feel it -m to experience this moment in time with all of us together in a place that usually only exists in my dreams.

:-) Sharon

Slowly but Surely

I'm finally starting to emerge from the fog of chemo. It's funny, but the first signal that I am feeling better is usually a generalized crankiness. I become very disgruntled and dissatisfied with lying around, and that's when I know I am coming back.

My kids are notoriously clueless about the depth of my suffering. This is good in some ways, but maddening in others. Here's an example from Monday: I had been vomiting all day and felt like I was glued to my chair. I hadn't even dressed beyond a nightgown. Smells and noises were absolutely excruciating. I had already sent Don to the shower after he went for gas for the lawn mower because I could smell it all over the room and it made me nauseous. For some reason, Ariel and Zach could not get along all afternoon. Every time I turned around they were bickering again, Zach in the doorway right by one of my ears and Ariel on the couch, right by my other ear. Finally exasperated, I said, "Ariel, you are almost 12 years old and Zach is almost 10. You are both old enough to have some respect when someone is not feeling well!"

Ariel looked at me with sincere confusion on her face and replied, "Who's not feeling well?"

ARGHHHHHHHHH! You are not going to find much sympathy around here for my plight. My life doesn't afford much compassion, either. I have been insanely busy since my treatment on Friday. We came straight home, grabbed the kids, and went to the premiere of Autumn's play "Alice in Wonderland". She did a terrific job as Alice. (It's funny because Andy and Josiah have always compared her to Alice due to her natural naivety.) In fact, all of the actors/actresses were well-suited for their parts. It was a very enjoyable escape, which is exactly what I like in a play or movie. After the play, we joined the Wallaces for dinner after taking the kids home.

On Saturday, I woke up about 5 a.m., vomiting profusely. I was worried about our trip to North Carolina, but my stomach finally settled enough to leave the house at 8:30. We picked up Daddy and Virginia for the trip, and Andy and Tabitha went separately in her car. It rained quite a bit, so we had the picnic in my aunt's garage, but it was still a great day. The food was delicious, and we spent time with my dad's sisters and brother and their families. That trip together each year means so much to me and Daddy. I am glad that we have made it our tradition to go. There's something so peaceful, so continual -- if that makes sense -- about returning to the place from whence we came. I love hearing Daddy's stories about the mountains and the family. It's a wonderful experience. (On a funny note, we used Don's Garmin to map our route -- even though Daddy knows those mountains inside and out, we thought the Garmin might know the shortest way. Well, the Garmin makes no allowance for the curviness of the roads, and WOW did we ever take some curvy roads. One of them I remember all too well from my youth when Jenny and I got car sick so easily. It's called "Straight Branch", and whoever named it that has a very sick sense of humor. It's easily THE most crooked road I have even seen. It's incredibly beautiful, though, even in the rain.)

I laid around all day on Sunday, sick and miserable. On Monday, I made the trek back to Knoxville for my Neulasta shot -- which, of course, ushered in a an even more miserable 24 hours of aches, fever, and chills. In spite of this, I went out Tuesday (yesterday) to finalize all of the plans for this week's anniversary dinner: the cake, the flowers for the altar, the announcement in the newspaper, the final menu, the guest book and decorations for the main table. We also gathered up x-rays for Eric and Lacey's visit to the oral surgeon today to make preparations for them to have their wisdom teeth out later this summer. Additionally, we took the van to the car lot for more service before our beach trip next week.

Whew! This afternoon, I finally lazed around for a while on my chair while Don watched cartoons. He likes the "oldie" cartoons that come on one of our cable channels in the afternoon. Usually Zach watches them, too -- a respite from the afternoon heat. Today, Zach had gone to the pool with Lacey, Ariel, and Derrick, so Don was watching them alone. I watched him for a while, and it occurred to me how very much I love him. He is my best friend, my companion, and the one person in the world who truly understands the depth and breadth of my battle. I just would not want to walk through this world without him.

About 4:00, he went out to mow. It was a beautiful day here, not so humid, so I jazzied outside and sat under a shade tree with my quilt books to plan and dream. (I don't know if I've told you this or not, but Don bought me a new sewing machine last week. I've never owned a new one, just a persnickety old hand-me-down that has served me well through years of sewing. So, with my new machine, I am going to get serious about my goal of making each of the children a full-sized bed quilt. If I machine-piece the quilts, and hand-quilt them, I should be able to make some progress, right?) It was so nice and peaceful in the afternoon shade that I had a hard time dragging myself back into the house.

So, overall, I think it's safe to say that the worst of the chemo effects are behind me. I am very, very weak, but my strength is slowly returning. While I was at the hospital on Friday, they scheduled my tests: CT scans and MRI on July 7th (the day after we return from the beach), followed by results on July 11th. The "master" plan is to get me to a sarcoma specialist, armed with these results, to get an expert opinion on the best next course to take. But for right now, the plan is built around living: the 50th anniversary dinner, Lacey's 18th birthday, our first family vacation in 3 years. The kaleidoscope of life keeps turning, mixing the brilliant hues of happiness and laughter and celebration with the darker shades of sorrow and pain and suffering to create a more breathtaking display of colors than I could ever have imagined. I can't wait to see the scenes unfold, one by one, against the deep blue summer sky of my life.

:-) Sharon

The Great Wall of Dread

Well, here I sit again staring at it. I don't want to go tomorrow; I just don't want to do this again. I'm okay until about 24 hours before the appointment, then the anxiety begins. It's so very hard to submit myself to these treatments over and over, knowing how sick and exhausted and crappy I will feel when the effects kick in.

My appetite is completely gone today. I don't guess it's any great secret that food used to be one of my great passions. I turned to it (foolishly) for every emotion: fear, frustration, exhaustion -- even happiness! And my body paid a heavy price for this covert relationship. So I suppose there is some poetic justice in the fact that food is now a frequent repulsion to me. I always thought it would be wonderful if I could just lose my appetite, but it is actually a terrible feeling. I get so hungry, and yet nothing appeals to me. I choose something that seems appetizing, but when the plate is placed in front of me, I cannot eat more than a few bites. Finally, in desperation, I force myself to eat something, then hope and pray that it stays down ...

My bp was also up a little at the doctor's office today: 130/92. My bottom number has been running 78 - 80ish, so I guess this is another sign of the stress that I am feeling.

I know, I know: this is the last treatment -- and, believe me, that is the ONLY way I might be able to drag myself over there one more time. Autumn's play is tomorrow night, and Don and I will travel to North Carolina on Saturday with Daddy. And, yes, I AM going to both, even if I am sick and weak and miserable. I'm not going to let cancer rob me of these beautiful moments of my life.

I just want to get this behind me and get back to LIVING!

:-) Sharon

Three Years and One Dip Later ...

June 4th was the three-year anniversary of the day the cancer shattered my right femur and put me in a wheelchair from which I have never fully escaped. It's really hard for me to think about myself during that time; I was absolutely terrified. The pain was terrible, the doctor had (correctly) predicted that the bone would never fully heal, and I was left to adjust to a hospital bed and to teach myself to use a walker because the pt group that handled my case managed to see me 4 times out of 18 scheduled visits. Don and I didn't know what we were doing carewise -- all I knew was that I NEVER wanted to hurt like that again, and avoiding pain became my new goal in life. Our home was not the least bit wheelchair-accessible. We had to add a driveway in the back yard for the ambulances and our van in order for me to be able to safely leave the house.

It was, of course, the gateway to some very dark chapters of my health. Certainly in retrospect it is nowhere near the worst of the many ordeals I have experienced the past three years. Still, it has the distinction of being the first real deterioration of my quality of life due to cancer. It was a harbinger of things to come, and the abrupt end of any innocence that remained about the gravity of my cancer diagnosis.

Since it was the anniversary of "the fall", I decided it would be the perfect day to face my fear of getting into (and OUT OF) the pool again. So, I put on my bathing suit and Don drove me down to the neighborhood pool. I didn't have any problems getting in, but I could tell that my legs are weaker than they were when I swam last summer. The water was still somewhat crisp, but not bad if I kept moving. I walked, did some exercises, and swam for a whole hour. Then, with the help of my trusty cane and the pool rail, I climbed out without incident. Yahoo!

Yesterday morning, every muscle in my body ached. I was actually happy -- no, not because I was suffering, you bunch of smarty-pants! I was happy because this proves just how beneficial the pool will be for me. Can you imagine how good it is for my body to be off of the chair, in the water, and in constant motion for one or two hours? I can also tell that it still has psychological benefits, too, because I find myself craving it again already. I was hoping to go tonight, but life intervened.

We have been desperately seeking a reliable used car in our price range (haha) for Lacey's 18th birthday in two weeks. We have also been looking for a replacement for Autumn's blazer, which has no air conditioning AND broken power window controls -- very unsafe in this heat. Well, believe it or not, we found BOTH of them one today. We had asked my FIL to check out a car that a man at our church had for sale on his lot. Before he could contact him, the man returned our call this morning. Don and Eric went to the lot, met the man's partner, test-drove the car, made an offer that we could afford, and purchased the car. A short while later, my FIL stopped by there, only to be told by the partner (who doesn't know any of us) that the car had already sold. So he told my FIL about a great deal they had on a one-owner car that was very reliable. When FIL arrived at our house to tell us about the second car, he learned that Don had already purchased the first one. He then recommended that we purchase the other one, too, as a replacement for Autumn's vehicle. So, Don, FIL, and Autumn went back to the car lot, test-drove the second one, and purchased it, too. It has working air conditioning, and -- get this -- manual-crank windows. Autumn was so happy!

On top of this, we are dealing with our crisis-du-jour: one of our kids stuffed a bunch of straws down the sink drain. Don, unaware of the straws and having tried everything he could think of to fix the sink, finally took a plunger to it. The straws came out, but the pipes under the sink sprang a leak. Additionally, the dishwasher is making a terrible racket when the water drains. SO -- the plumber will be here tomorrow morning to rectify our problems. And, yes, I threw away every straw in the house.

So, the morning of car purchases combined with the afternoon of appointments and errands, the kitchen conundrum, and the stifling heat completely sapped my energy. It's probably a good thing that I didn't go this evening anyway, because an unexpected storm came up without warning. Since I can't get out very quickly and my wheelchair has a metal frame, I don't want to get caught in the pool in inclement weather.

Life has been very hectic this week, and I can't predict that it will settle down very much during the next few weeks. Still, I'm thankful for the fact that the chemo has not slowed me as much as I had feared. I am looking forward to getting that last treatment behind me next Friday, so that I can concentrate on enjoying this very busy month of our lives.

Maybe I can live hard enough and happy enough to put the cancer completely out of my mind for a while. Maybe, instead of trying to avoid pain, my new top goal can be to concentrate on FEELING every minute of life.

I can try, right?

:-) Sharon

Great Expectations?

It's been one week now since my last chemo treatment, and I find myself weary. Overall, I can't really complain about the way I've felt this week. After a day (Sunday) of weathering the Neulasta side effects, I started feeling a little better each day. We did have our cookout on Monday, with 30 guests, and it was a fun afternoon for all of us. I went to bed that night exhausted, but with a smile on my face because I was so happy that it went so well. I was able to eat one of Don's famous burgers, and even a hot dog later on in the evening. (And believe me, hot dogs are not something that I chance if my stomach is feeling "iffy" -- a throwback to childhood days when the traveling carnival was in town. I'll spare you the details. Suffice it to say that I am VERY careful what I eat on the days I feel nauseous, because I don't like vomiting chunks of food. Okay, okay, I'll stop now.)

I don't know if I mentioned this in my blog or not, but I have been downright paranoid that this cycle of chemo is not working because I have not been nearly as sick as I was when I took the Gem/Tax treatments. I mentioned this to the doctor several times last Friday, asking him if I'm not miserable, does that mean it's not working? He finally looked at Don and said, "Mr. Leming, here's what I want you to do. Whenever you see that she is feeling really well, reach over and kick her once in a while so that she can feel like she's suffering."

Hilarious? Yes, but it begs the question: have I learned to expect / accept suffering and misery? Has it become acceptable to me? Do I rail against it as hard as I could, or do I just scoot over and let it cozy up beside me? I don't want to think that I have "dumbed-down" my expectations to the point that misery is okay with me. And this begs another question: do I work as hard as I could at improving my health, especially my mobility? As you know, I stopped my "cane walking" after I was diagnosed with cancer in the OTHER hip and told that if it broke there would be no repairing it. The thought of suffering another fracture terrifies me. But have I let fear overtake me to the point that I am not as mobile as I COULD be? The pool opened a week ago, and even though I'm not supposed to frequent public pools until I'm past my nadir (low point for blood counts) AND the temperature hasn't been hot enough to truly heat the water, I'm afraid that the real reason I haven't gone yet is because of fear. What if I get in and can't get out? (Hey, it's happened!) What if I get in and it hurts? Or it's cold?

AAARGH!!!! Cancer has made me a giant chicken. Do I go to such great lengths to avoid suffering that I avoid living, too? I hope not! I have to be willing to get out of my comfort zone, or else my universe is shrunken to this house, this room, these walls. Do I want summer to pass without my beloved pool, where my body isn't crippled and I swim like a child? Of course not. Yet I sit here, feeling grouchy and wishing I could do more physically. I get frustrated with the kid-and-husband-done house cleaning, and I long to be able to do it myself again. How I would love to clean up a storm, clearing out dust and scrubbing until the whole smells like Pine Sol and even the air feels crisp and clean! When I was working, we always cleaned on Saturday morning while Don worked a half day at the factory. I would get on my hands and knees and scrub the tubs with gusto. By the time he got home, the house was clean and the kids and I were relaxing.

I know: I miss strange things. But the fact is, sometimes I just miss EVERYTHING about being normal. I never realized the beauty of an ordinary (and often hectic) day, filled with work and errands and housekeeping and running the "mom taxi". Somebody stop me before I start wallowing in self pity! You know, whenever my kids worry about leaving me to pursue their own lives, I tell them "this is your season for living". Well, so far, it's still mine, too, and I need to concentrate on the things that I CAN do, and on expecting GOOD things to happen instead of more suffering. Sure, the suffering may come, but there's no need to set it a place at the dinner table.

Here's hoping that all of us can expect many great things this summer.
:-) Sharon

Pomp, and Circumstances

After I wasted a good deal of time crying and dreading and obsessing about it last night, I had my second adriamycin treatment this afternoon, after a morning of blood work, nurse's assessment, doctor's visit, and pre-meds. The actual injection of chemo is probably the shortest part of the whole ordeal, but all of the other things are necessary, too. My blood counts are still good -- Yay! I have to go to Knoxville again tomorrow for my Neulasta shot. The Neulasta shot, while necessary, packs some very unpleasant side effects. Since it causes my body to build white blood cells, sort of like my body is fighting an infection, it causes the same kinds of symptoms that come with flu -- body aches, fever, chills, general feeling of malaise. This means that Sunday should be a fun day for me! Hopefully, that will be the end of it, and I will be ready for our graduation celebration, a cookout here on Monday afternoon with around 3 dozen guests if everyone shows. We will have Don's famous burgers with all of the trimmings, cake and ice cream, and homemade lemonade made just the way I like it (MUCH too sweet, lol!).

And, YES, I also made it to the graduation ceremonies this evening. We got home from chemo at 5:15, took a quick round of pictures before Autumn and Lacey left at 5:30, then I changed into my dress and got ready, finally leaving for the Expo Center at 6:30. It was crowded, and there was no handicapped parking remaining, so Don and Zach dropped off the rest of us and went to park. Instead of a ramp, they have a very ssssllllloooooowwww lift. Thankfully, I had requested reserved seating due to my health/wheelchair, and they so very kindly accommodated us by roping off a section on the concourse level with a space for my wheelchair and a dozen more seats. They even assigned someone to "guard" the row for us until we arrived so that no one else would take it.

I sat there victoriously, thinking about the fact that the girls were 10 years old when I was diagnosed with cancer. Who knew if I would live to see this day? Well, guess what! Cancer, are you listening? I'm STILL HERE! You didn't keep me away from this celebration. Take that, cancer, you evil cartoon villain! (Curses, foiled again ...) Yes, I had a whole day of chemo-related events, but I had graduation, too. And I enjoyed every precious moment of seeing my beautiful daughters walk across the stage into young adulthood.

And so ends another ride on the long, harrowing roller coaster ride that is parenthood. You climb on tentatively, having heard that it's a wonderful trip but still a little nervous of what you might encounter. Soon the ride is underway and you find yourself strapped in as your life careens up and down at breakneck speed and through stomach-churning loops, leaving you dizzy and frightened at times and yet deliriously happy, too. There are times when it moves so fast that the car tips in a curve and you think the whole thing might fly right off into the abyss, but it miraculously adheres to the track. And when you finally arrive with a jolt at the station, lurching dizzily onto the platform, you find yourself wishing that you do it all over again.

Sadly, like all of life, you cannot. Andrew, Josiah, Autumn, and Lacey will not be children again. And all of the things that I cherished about their childhood are only memories now -- Andrew with his race cars, keeping holes in the knees of his pants and even his pajamas because he spend so much time on the floor rolling his toy cars; sweet, stubborn Josiah, who liked to have things his way and insisted that his school projects and all of his extra-curricular pursuits be done to perfection; Autumn, who was ridiculed once by her fifth grade class when they were told to plan a party and she innocently suggested flowers (instead of rock stars, strobe lights, etc.); tender-hearted Lacey who came to live with us just after her 10th birthday, rough around the edges because no one had taken time to help her with manners or ladylikeness. Sho longed for a forever family but sorrowed still for her real mother, who had promised to return for her one day.

Those days, like all days, are never coming back. Though we can visit them in dreams and flights of fancy, they are gone forever. And so we move on into the future, which is better than the past anyway because it's still attainable, ripe for the picking, ready for another roller coaster ride ... or a cookout ... or maybe, for the moment, just a long night's sleep -- where, if I'm lucky, I'll be met with a delicious dream of children playing and laughing and dancing all around a happy, healthy, beautiful me in the sweet innocence of yesterday.

:-) Sharon

Strawberry Jam

I have spent the past two days in the land of the living. Don, Jenny, and I spent two days slicing and mashing and cooking and canning strawberry jam. It took every ounce of energy I had and then some! I was so completely and gloriously immersed in the simple joy of it that I hardly thought about cancer at all. To me, that is the ultimate of victories: the moments that are so wonderful or so consuming that the thought of cancer and pain and fear and disability are far from my mind.

Still, there is that part of me which is ever cognizant of the fact that this joy -- this struggle -- this LIFE -- could come to a screeching halt at any time. Not only do I realize that the clock is ticking on the doctor's estimated expiration date (THREE brief and precious months have already passed since he told us his "best guess"), but I also understand the truth about late stage cancer. It can take a sharp and dramatic turn for the worse, often without warning. And then the life that hangs so fragilly in the balance loses it valiant fight against the monster. All of the hope, the struggle, the love of family and friends, and all of the desperate will to survive cannot stop its terrible progression or write a happy ending to the story.

But even if there can't be a happy ending, can't there still be a happy now?

In pursuit of it, I strive to slurp every last drop of joy out of every day. I leap daily without hesitation in the deep, bubbling stream of life, and when I am too exhausted to swim any more, I sit on the sidelines and bask in the happy memories of those moments spent, not fighting or suffering or worrying, but LIVING. I guess it's my way of sticking out my tongue at the cancer, of announcing to the universe that "I have cancer, but it doesn't have me!' (Remember the old Alka Seltzer commercials?)

Should I pace myself a little better? Probably. Work harder on my physical therapy and constant recovery? Undoubtedly. But most of the time I choose instead to simply take each day as it comes, filling the hours with as much activity as my poor old tired body can withstand. Then I retreat to my chair to ease the pain in my back and to manage the mundane, ordinary affairs of the day. And when I fall into bed much later than I should, exhausted and achy, I drift off into the happiest of dreams where I am healthy and beautiful, young and whole.

It may not be the smartest way to live, but it makes me very, very happy.

:-) Sharon

P.S. --Speaking of happy, I got good news from my blood draws today. My white and red blood cells counts are both great. Yippee!

Happy Mother's Day

Mother's Day is almost over, but I don't want to miss the opportunity to say "thank you" to everyone who wished me a happy, carefree, healthy day -- and to my 9 beautiful children, who bestow upon me the supreme privilege of calling myself a mom.

Thanks to some nasty weather and painful leg cramps (forgot my potassium pill last night), I didn't make to church this morning. I did, however, make it to my mother's house for a few hours this afternoon. My sisters cooked, and we had a wonderful time together. I forgot my camera, but hopefully I can add some photos after my sister sends me copies of hers.

Here at home, we celebrated yesterday. Early in the day, I took the girls to have their hair trimmed and to Wal-mart for our annual swimsuit search. There's no place in the world quite like Wal-mart on a Saturday, especially the day before a holiday that is dependent on men and children purchasing gifts. FOUR HOURS later, we arrived home. I was exhausted. Those girls sure do love to shop!

Later in the day we had a cookout. Don grilled steaks and made his delicious homemade yeast rolls. My in-laws joined us so that we could celebrate with Don's mom, too. The weather was so beautiful, and the food was so good. They surprised me a beautiful bracelet and some other gifts.

Overall, I have been feeling very well lately. I do have a sore throat and swollen lymph nodes, which I hope is not indicative that my blood counts are sagging. I will have my bloodwork done one day this week. I need to SLOW DOWN a little and not overdo quite so much. I'm like a kid turned loose in a amusement park, trying to do everything all at once. When I feel well, especially after I've been down, I seize every opportunity to be active and productive and happy.

Life is just so tempting ...

:-) Sharon

Lo and Behold?

After several really sick days, I felt wonderful today. I went to lunch with my home-health crew; since they are not coming here to see me these days, we wanted to catch up on everyone's lives. Don and I went to the mall to get a battery for his favorite watch, and on the way home I noticed that the farmer's market had strawberries! One gallon later, I came home and baked a strawberry shortcake. Then I "jazzied" outside to get the newspaper and it was so beautiful outside that I sat out in the shade to read it. My roses are coming out in front of the house and everything is so deliciously GREEN.

I'm really surprised to be having such a good day so soon after a tough chemo treatment. Since I had been feeling terrible the past two days, I fully expected to hunker down and weather a couple of rough weeks. (Yesterday, I didn't even make it out of my gown or off of the chair except for bathroom trips.) So -- is this a fluke? Or could it be, could it maybe be, that this treatment won't pack the usual side-effect-laden punch? (And if it doesn't, does that mean it isn't working?)

I know, I know: I need to stop questioning it, and just enjoy it!

Strawberries, anyone?

:-) Sharon

Why Not Now?

When I told my oncologist at my appointment Friday that I wanted to resume the single-agent Adriamycin chemo as soon as possible so we will know once and for all if it's effective for my tumors, he said, "Do you want to do it today?"

At first, I was aghast, and he laughed at the look of stricken horror on my face. He said I could wait until next week or whenever I am ready, mentally and physically. But I thought about the fact that gas is SO expensive and Knoxville is an 80 mile round-trip -- and I realized that if we scheduled it for Monday I would no doubt come home and worry/obsess all weekend about it. (Sometimes "doing" is better than "dreading"!)

So -- I had my first treatment of Adriamycin today, along with a pre-med cocktail of decadron (steroid), benadryl (anti-allergy), aloxin (anti-nausea), and ativan (anti-anxiety). Our nurse was extra nice, and made me feel at ease throughout the process. My port cooperated so they did not have to access any veins.

Yahoo! I'm so happy to have it behind me. I will need a shot of Neulasta on Monday, and blood work next week, but the actual treatments are 3 weeks apart. This means that 2 and 3 are scheduled for May 23rd (yes, graduation day) and June 13th (opening of "Alice in Wonderland").
So far, I am feeling okay. I'm tired, but it's been a LONG day. No nausea yet. I know the difficult days will come, and I will deal with them as they arrive. There's no use worrying into the future, right?

Oh, but there is one more thing that I haven't told you. I've been having terrible back pain again, so bad at night that is hard to sleep; but today the steroid treatment made the pain stop completely. You may remember that this was the reason that the doctors were SURE that I had a spinal tumor when it first paralyzed me in December 2005. They couldn't find it (because they were looking in my lower spine, rather than at the thoracic level), but they were convinced it was there because of 1- the paralysis, and 2 - the fact that the steroid eased the pain when nothing else touched it.

Is it back again? I don't know. I'm just saying that the symptoms are there. We will schedule an MRI for one day next week. Here's hoping that I'm just over-reacting to the pain.

Still, we have reason to celebrate tonight. One cycle down, two to go!

:-) Sharon

One of THOSE Days ...

Today I had one of those plunked-on-my-chair-in-my-nightgown days. It was bound to happen -- I guess it's a "hangover" of sorts after the busy-ness and excitement of the past couple of weeks. I was just tired and achy, so I vegetated on the chair and worked on my calendar of upcoming family events. Here's an overview:

May 2 - Oncologist appointment.
May 11 - Mother's Day (no plans yet, but need to do something special for Mom and Don's mother, plus the kids will want to plan something for all of us together).
May 23 - Autumn and Lacey graduate from high school.
June 7 - Daddy's birthday, which he and I actually celebrate with Father's Day, when we make our annual trek to Ashe County, North Carolina, where I was born and much as his family still lives. It's a wonderful chance to spend time together, see people that we love, and visit one of the most beautiful places in the world.
June 13 - 15 - Autumn's performance of Alice in "Alice in Wonderland" by the Rose Center Summer Players
June 15 - Father's Day (trip to NC!).
June 21 - Don's parents celebrate their 50th anniversary. We are hosting their anniversary dinner, followed by a fellowship after the Sunday evening service at church on Sunday, June 22.
June 28 - Leave for VACATION on the Outer Banks!!!!

I'm going to need a LOT of energy for all of those things, especially if I am managing chemo side effects at the same time. It will definitely require some careful planning, strategic delegation, and maybe a small miracle or two! It will also give me so many precious opportunities to make some memories with the people that I love.

:-) Sharon

One Sunny Saturday in Spring

I know, I know -- I have not yet blogged about my trip to Hugfest. Don and I met wonderful people, had crazy this-could-only-happen-to-us adventures, and learned a lot about the research that is being done 'round the clock to find a cure for LMS. It was a grand experience, both exhilarating and exhausting, and I am so glad that we were able to go. It was a real stretch for me physically, and I was really out of my comfort zone. (But let's face it, my comfort zone is a lift chair and a bedside commode, so it's basically limited to the inside of our home. This means that if I never go out of my comfort zone, I never go out, period. And that's simply not acceptable to me.) I'd like to give the details of our trip -- parts are humiliating, and parts are hilarious -- but it would make for a long blog entry. Maybe I'll write it all down and add it to my "thoughts" page one day.

Anyway, I really want to talk about today. We have been working on a giant project in our front yard, so Don and I went to our local giant home improvement store to buy landscape lighting. While he shopped for a few other items, I headed for the garden section, where all of the beautiful bedding plants and hanging baskets are located. Happily, I wandered through the aisles of hanging baskets, gazing up at them from way below (wheelchair-level), enthralled with their simple beauty. I was trying to choose two baskets, one for each end of the porch. I was so happy that I couldn't stop smiling. I just couldn't shake that kid-at-the-carnival feeling which kept reminding me, "You're here; you're alive; it's spring, and we're buying flowers!" I proudly brought home my New Guinea impatiens and the landscape lighting to complete our project. Our yard looks so nice now!

I love the smell of the just-mowed and oh-so-green grass, the little flowers that pop up everywhere, and the way our whole family migrates outdoors because it's impossible to resist the warm sunshine. I remember on those cold, dreary winter days when I longed for a day just like this one -- it's finally here, and it made me feel so happy and carefree today.

I'll be heading to the oncologist's office on Friday (May 2nd) to schedule my next round of chemo. My break will be over, and it will be time to fight again. But right now, I think I'll roll to the front door and sneak one more peek at my pink and orange flowers and the delicate white landscaping lights that now welcome us home at the end of all of our journeys.

After all, there really is no place quite as comforting as home ...

:-) Sharon

It Finally Happened ...

The moment that had tormented me in recent dreams.

Don and I were about half-way to the airport to pick up our son when I realized that my head felt unusually cool ...

I raised my hand to my head to adjust my head cover ... and it wasn't there.

In my hasty, hectic departure, I completely forgot to apply my head covering. No one here noticed because they are accustomed to seeing my head in all of its grotesque glory.

So what now? I could not go into the airport like that! We were too far from home to come back for it. After a moment or two of full-blown panic, I remembered that there was a dollar store near us. I called ahead and asked them to bring a bandana or scarf or hat of some kind to the register for Don to purchase. He went into the store and $2.19 later he emerged with a 2-pack of blue bandanas. We continued our trip to the airport ...

I've decided that this is utterly ridiculous. While I am not prepared to go around with my head exposed to the world, here it is for your viewing pleasure:

(Don't say you haven't been warned ...)

So, there you have it. It's ugly. It's scary. It's downright disgusting. But guess what?

I'm alive! And fighting hard to stay that way ...

:-) Sharon

P.S. -- Can you see the tumor above my eyebrow? It's the same one that I mentioned several months that I can feel in my eye socket. It's growing, so it will need to be addressed in the near future.

Gathering Rosebuds While I May

Hello again!

You will be happy to hear that the reason I haven't blogged for a full week is that I have been feeling much better! When I feel well, I do a lot of things, large and small, that I can't do when I am down.

Don and I traveled to Nashville earlier this week to see Josiah perform live. (Other than his "live" performances in our basement, I had never seen him perform his own music.) Seeing him perform live is an amazing experience! It was a fun trip, and I was able to meet some of his great fans and re-connect to one of my longest friends -- I was going to say "oldest" friends, but that has terrible connotations, and after all, we are the same age! Lauren and her husband picked us up at the hotel and hung out with us at the concert. I guess it had been 14 or 15 years since I had seen her! She looks great, and we had a good time catching up on all of those "lost" years.

Since I did fairly well on this trip (thanks to an afternoon nap to find my "second wind" before the concert), I am less nervous about our upcoming adventure: Hugfest 2008! Hugfest is a yearly gathering of Leiomyosarcoma patients near Philadelphia. I have wanted to attend for several years now, but my health has not permitted me to do so. This year might just be my chance to actually make the trip. There are get-togethers, meals, tours of the hospital and the Philadelphia area, and an opportunity to meet both fellow LMS warriors and the researchers who work tirelessly to find a cure for us.

Hugfest is sponsored by the NLMSF - National Leiomyosarcoma Foundation, Inc.. Since leiomyosarcoma (along with other sarcomas) is so rare, less money is directed to its research than the "major" cancers. Of course, any cancer research is valuable to all of us, but it takes a long time for the new therapies to "trickle down" to sarcoma studies. Therefore, the NLMSF raises its own funds, which are used to hire and support researchers who focus entirely on leiomyosarcoma.

For those of us who suffer from leiomysarcoma, or who love someone else who does, this research is invaluable (priceless, as the Mastercard commercials say).

So, I am still here -- visiting with friends (including Janet, who came to see me today from Greeneville), spring cleaning our bedroom, spending time with our children, and going outside to frolic in the sunshine every time I can find an excuse to get out the door.

When I'm not blogging because I am feeling well, it means that I am LIVING!

Long live spring! (And all of us, too!)

:-) Sharon

What I did on Spring Break

Did you ever have to write one of those reports in school, like "What I Did on Summer Vacation"? Mine consisted of something like this:

We went outside barefoot every morning before the grass dried, and squealed if one of the cats had left a grass snake on the carport. We made houses for our Barbie dolls out of pine needles and filled our doll dishes from the spring near the swamp. Our lunch was peanut butter and jelly sandwiches with grape koolaid, served as a simple picnic on a blanket spread on the grass -- but we pretended it was our ship on a vast blue ocean. If I was very lucky, I spent the afternoon on the swing set reading the latest double-novel installment from the Nancy Drew book club. Otherwise, we spent the afternoon running foot races and pretending to solve mysteries. After dinner we would go back outside to catch lightning bugs in a jar, only to let them go because there was something so sad about them trapped inside the glass, still blinking, longing to soar again among the shadows of the darkening yard. Occasionally we caught a glimpse of fireworks at the fairgrounds on the other side of the swamp -- bright, booming lights against a Carolina moon. Way past dark, we took a bath, put on our pajamas, and slid under cool, clean sheets to drift off to sleep.

As a child, I always felt like my report was inadequate, because it seemed so ordinary compared to other students' summers. Now I realize it was nothing short of paradise ...

Fast forward to now: Here's what we accomplished on our spring break this week: 7 dental appointments - 7 eye exams - 4 doctor's appointments - 2 haircuts - 1 learner's permit -1 trip to the oncologist - AND 1 stomach bug -- yahoo!

But you want to hear about the oncologist visit, not my long-lost childhood or my hectic schedule, right? Okay, here's the new plan: Don and I are going to attend a leiomyosarcoma conference, called a "Hugfest" in Pennsylvania/New Jersey later this month. While there, we will meet the researchers and learn about the latest treatments for LMS. In the meantime, my oncologist is going to send my records to a sarcoma specialist at the City of Hope near Los Angeles. Josiah is making arrangements for my case to be reviewed by experts there.

We are hoping to get an appointment there this month. If that is not possible, we will pursue Plan B: I will see my oncologist again in 4 weeks, on May 2nd. By that time, we should be able to tell for sure if the last chemo has worked. If it has, I will go back on the single-agent treatment (not the combo!) -- adriamycin. It would be administered on an outpatient basis, every 3 weeks.

In the meantime, I will contact the neurosurgeon at Vanderbilt to schedule the cyber-knife type treatment for the largest brain met. The others, which are too small to treat right now, will be monitored by tests every three months.

I really don't want to do the adriamycin again if it's not working -- but I don't want to NOT do it if it IS working. After this, we move into the territory of trial drugs/off-the-shelf drugs, which aren't actually as scary as they sound. Off-the-shelf drugs are approved for other cancers but MIGHT work on leiomyosarcoma. Drug trials are done in phases. (This, of course, is a very unscientific explanation by a cancer patient, not a professional.) Phase 1 is basically testing to see the toxicity level of various doses on a small group of people. If no one's head falls off and no one's skin turns green, they move into Phase 2, which fine tunes the most effective dose, determines which types of tested cancers respond or don't respond to the chemo, and notes any adverse side effects. Phase 3 rolls the drug out on a broader scale to more patients of the cancers that responded well to Phase 2.

I don't know that I would ever consider doing a Phase 1 trial (to me that is guinea pig territory), but a later phase trial might be a possibility. It's often a struggle to get off-the-shelf drugs approved by insurance companies, but trial drugs, along with careful monitoring, are provided by the drug manufacturer.

So, there it is! It's not perfect, and yes, it wastes another chunk of precious time, but I feel better now that we have a plan in place.

:-) Sharon

Dreams of Reality

If you've been reading my blog for a while, you may remember me talking about the solace that I find when I sleep. In dreams, I am healthy, never crippled, and able to do things like run and climb steps. Sadly, I've been noticing lately that the cancer is creeping into my subconscious mind and subsequently into my dreams.

Let me preface my dream story with this: I had planned on sharing my journey of losing hair/growing hair with you by photos, but I lost my nerve after most of my hair fell out. The sight is so grotesque that I can't bear to expose it to the world, or risk someone copying it from my site for the sake of public ridicule. It's a painful secret that I keep to myself, hidden under a handkerchief made of fabric from Walmart's $1 bin -- hey, I'm cheap, not chic. My head is so unsightly that I even keep it covered most of the time here at home, in spite of the fact that the covering is hot and uncomfortable.

One night recently, I dreamed that Don and I had traveled with the boys by airplane to some unknown destination. Once there, I realized that my head was uncovered and began frantically searching for my handkerchief to hide the baldness punctuated by ghastly tumors. I found the boys one by one and asked them where Don had gone. They were seated at a long banquet table, eating with gusto from plates heaped full of food. Each of them shrugged nonchalantly at my desperate search for Don and my handkerchief. Finally, I sat down beside Zach and tried to fashion a head covering out of a paper napkin. Then, mercifully, I awoke.

I don't know why the dream bothered me as much as it did. Was it the vulnerability that I felt without the head covering, or something else? Maybe I simply resent the invasion of my illness into the sacred world of my dreams, where I am eternally young and healthy and not living in a twisted, shrunken, disease-ridden body. For whatever reason, the dream shook me up a little.

Anyway, my waking hours have been interesting this week, to say the least. The kids are on spring break, so we have done 4 doctor's appointments, 7 dental appointments, 4 eye exams, and 1 learner's permit. Tomorrow we have 3 more eye exams and my much-dreaded visit to the oncologist. On top of this, I've been struggling for days with a stomach bug complete with vomiting, diarrhea, and terrible headaches. Fun stuff.

Still, I concentrate on finding the happy spots in each day. Years ago, I read a book called "My Sister's Hands", which told the story about a woman whose sister died of cancer. She spent many hours by her sister's bedside, and she would massage her sister's hands or her feet -- anywhere that did not hurt -- to take her mind off of the pain in other parts of her body. Although I certainly did not understand that story like I do now, I learned something from that book: concentrate on the parts of life that do NOT hurt to ease the pain of the other parts. Some days are better than others, of course, but I try to find small joys wherever I can. Rain falling on the roof. Children laughing. Talking to a friend. Eating a cold, fruity popsicle. I find there are usually little pockets of happiness even on the very worst days. Sometimes you just have to dig a little deeper in yourself to find them.

Could someone please pass me a shovel?

:-) Sharon

P.S. -- I will update you tomorrow after my doctor's visit at 11:30 a.m.

Happy Birthday to Two

Happy 19th Birthday, Josiah!
Happy 18th Birthday, Autumn!

Today marks a double milestone for our family. Don and I went to dinner with the two of them at a Mexican restaurant, then to the mall for some birthday shopping. At home, the whole family celebrated with Josiah's traditional birthday choice, a cookie cake, and an ice cream cake for Autumn. We ended the day with a fast-paced game of scrabble, and both Andrew and Josiah outscored me by an embarrassing margin.

We've always tried to do separate celebrations for their birthdays, so that each one could have his/her choice of activities, but sometimes we do combine them. One of the most memorable was a birthday probably 10 years ago, when we had planned double slumber parties: a party at the church, followed by the girls spending the night there and the boys staying at our house. Each of them was allowed to invite six guests. We wanted to have plenty of time for all of the planned activities, so we requested on the invitations that the guests be allowed to come directly from school to our house. What we weren't expecting -- and certainly could not have predicted -- was the several inches of snow that turned school out mid-morning. I had more than a dozen kids in the house (and out in the snow) all afternoon while I prepared the food, cake, and decorations for the party.

And I'm sure Autumn wouldn't want me to tell you about the time that she threw up on several other family members in the van seat in front of her after a trip to Celebration Station ...

Birthdays in our house are always an adventure. Like all of life, it's a roller coaster ride that I enjoy with all of my heart. I hope the ride goes on and on ...

Happy birthday, sweet babies! (I guess it's too late to tell you to stop growing up so quickly.)

:-) Sharon

Easter Sunday

Happy Easter!

I really enjoyed going to church this morning. Easter has always been my favorite Sunday of the year, and I find it means more to me now than ever. We had dinner this afternoon when Andy and Tabitha got here, and everyone lazed around for a while afterwards to watch the college basketball games on t.v. Now I'm sitting in my chair, enjoying a warm fire that Don built after the sun went down and the chill set in. I'm tired, but happy. It's been a nice day.

I didn't have any luck in getting everyone lined up for a family picture, but the girls posed for me this morning in their new dresses and Zach was proud of his new suit. I also got a few snapshots of the older boys. The photo you see here of me and the girls is my favorite one of the day. You can see the other pictures we took on my photo page.

:-) Sharon

Friday's Update

You might be ashamed of me because I was not very proactive about the chemo issue today. When I called my doctor's office to find out what I time I need to check into the hospital on Monday, I was told that I am not scheduled for chemo next week and that my next appointment with the doctor is on April 4th. Now, I know I should have protested vehemently at that point and insisted on speaking directly to the doctor today. Instead, I thanked her politely and hung up the phone.

I do feel guilty that I didn't investigate further, because I really don't trust that bunch. I mean, this is the doctor who wanted to test me for meningitis when we all knew the ifosfamide could cause coma (and other central-nervous-system side effects) and had even DISCUSSED it with him just a few days before I started the chemo. This is also the office where the lady who called to scheduled my tests at UT Hospital whispered to the person on the receiving end, "I've never even HEARD of this kind of cancer." Gee, thanks. That's exactly what I want to hear from the REGIONAL CANCER CENTER! I'm not sure that these are the crew that I want at the helm of my cancer-fighting ship. But I just don't know if I have the energy to search for another oncologist right now and start all over again.

So, I admit it, I acquiesced. So sue me. Yes, I know that I can't keep taking breaks, and yes, I know that my secondary insurance is ending on March 31st. But the thought of two weeks of -- NOTHING -- is absolutely exuberating. I'm finally feeling a little better. I actually have the energy to leave the house every now and then. And I can eat fairly well, as long as I avoid things that aggravate my mouth sores.

And just to prove that our whole lives don't revolve about my health, I'll tell you about our day. Don and I took our four daughters and my mother to the mall to shop for Easter dresses. It was a major splurge on our budget, but it's something that I really wanted to do. They have been cheerfully wearing hand-me-downs for so long now, and I wanted them to have something new and pretty and picked-by-them. They all found dresses and shoes -- and a few other items here and there. (I must confess that I even bought a couple of things for myself.) I've been feeling somewhat reckless about things recently. Is it that I am rebelling against all of those years that I spent pinching every penny to keep the family boat afloat on a shoestring budget? Or am I celebrating the fact that I am alive and spring is finally here and we have four beautiful daughters? Either way, I'm sure the financial hangover will hit later in the month -- but I don't care. I loved seeing their happy faces as they tried on dresses and looked for shoes. And I realized as I watched them that they are growing up so fast, and even if I live to be 100 years old I won't always have them here with me like this.

For a little while, I reveled in the wonder of daughters and spring dresses and motherhood. Even though my bald, tumor-laden head was lurking beneath a handkerchief, I wasn't a cancer patient. In spite of our ever-shrinking bank balance, I wasn't a penny-pincher. For a few hours, I was a woman and a shopper and a mother.

It was a much-needed mini-vacation from the daily nightmare of my life with cancer.

:-) Sharon

Cheetos, Freezer Pops -- and Brain Tumors

I tried drowning my sorrows in food tonight. I sampled an array of my former favorites, including cheetos, freezer pops, girl scout cookies, pepperoni pizza, and even a Krispy Kreme chocolate-covered, creme-filled donut. Unfortunately, my long-held enthusiasm for food eludes me, like so many other passions that have been lost to lack of energy and fierceness of battle. Anyway, I'm sure you didn't check in to hear me confess my food-related sins. You want to know about the very thing that I am trying desperately to forget: my appointment with the brain surgeon.

For starters, I can't call it "the brain thing" any more. The neurosurgeon says that it definitely is a bonafide brain tumor. And it has friends - at least four more (smaller) tumors in my brain. He went on to say while it is operable, he would not recommend a craniotomy because of my full-blown, metastatic, advanced cancer. So what are my options? The first one is whole-head radiation. The advantage to this option is that it would target all of the brains mets at one time. The disadvantage? It can cause permanent memory loss and cognitive impairment. Of course, he cheerfully informed us, this is usually delayed and most patients with advanced disease such as mine don't live long enough for this to become a problem.

The more likely option is some variety of radiosurgery (cyberknife, gamma knife, etc.) I could have the biggest one radiated now and watch the smaller ones with quarterly scans. The disadvantage? Sarcomas are notoriously radiation-resistant, so it simply might not work. Still, this could be repeated with other ones that grow large enough to be problematic, and the side effects are minimal.

In the meantime, I can continue the adriamycin chemo if I choose to do so. This means that I need to make a decision by Friday, because I am due for another round next week.

So, there it is. More tumors. Big decisions. Eventually, I'll have to harness my coherent adult mind and make some hard choices. Right now, I feel a little hungry.

Ice cream, anyone?

:-) Sharon

Hair, Hair, Everywhere ...

No, it's not a mug shot -- just an updated photo of what I look like these days.

I feel like a shedding dog tonight. It reminds me of when I was pregnant with Andrew many years ago. There was a young couple who lived across from us in the apartment complex, and she was also pregnant. We would hang out sometimes in the afternoons, and they had a small white dog that shed everywhere. I would go home covered in white dog hairs, ready to get away from the dog and change my clothes as quickly as possible.

Now, there's really no escape from it. Hair covers my pillow, my gown, my shirt. I scratch my head, and out comes a clump of hair. I pull the phone away from my ear, and there's another clump. I stack them on the arm of my chair, and Don comes by once in a while and discreetly removes the pile of hair.

It's really thin now, especially on top, so much so that I will have to cover it in public. Ugh! I want to have a t-shirt made that says: "Yes, I have tumors on my head, but they don't do tricks. So PLEASE STOP STARING!!!" Don't people teach their children not to stare any more? But actually, it's not usually kids doing it -- it's adults. And their looks range from horror to pity. Either way, it makes me feel like a freak show.

Here's a funny story from the last time I lost my hair. I might have told it on an earlier blog, but it bears repeating: Zach, our youngest son, watched the whole process of me losing my hair/regrowing my hair with great interest, celebrating each gain with me. One day we were sitting together, and he suddenly became very happy. "Mom," he said excitedly. "Mom! Your mustache is back!"

In the grand scheme of things, I guess hair is the least of my worries. It grew back in quickly when the chemo ended last time. But I think I'd rather be bald than shedding! LOL!

:-) Sharon

Another Day

I'm happy to announce that today's blog is not moody. It's basically a boring update on where I am now and where I go from here.

BLOOD COUNTS

Based on yesterday's blood draw, my blood counts are great. My platelets are a little low, and I am low in potassium (but have been for a long, long time). Other than that, both my white and red blood counts are good. Hurrah!

HAIR

This is how I look right now. Kinda scary, huh? My hair is coming out in clumps, and it's getting very thin. Can you see the large tumor sticking up in my hairline? I was doing a "strategic part" to disguise it, but I don't have enough hair left to hide it now. My scalp is dreadfully sore and tender, so much so that I no longer lean my head back on my chair because of the pain it causes. I really should start covering my head, I guess, so I won't scare small children. But I don't want to do it, and besides, it's generally the rude adults who stare at me, not the small children.

CHEMO

So, what in the world do I do about the chemo treatments? My oncologist wants me to continue the current cycle, using only the adriamycin and not the coma-causing ifofsamide (which, BTW, is what I wanted to do in the first place but was overruled by the team of experts). I guess I could do that, but I'm still skittish after the last episode. I just don't know if I can talk myself into submitting my body to another one of those awful treatments. But then again -- what if it's working?

There is, however, another factor that may moot the decision point about the chemo. That is:

BRAIN THING

You may remember me saying after my hospital stay that the MRI shows a small tumor in the lining of my brain. (It is not actually touching my brain -- yet.) Well, what I didn't tell you is that the neurosurgeon there does not think that it is operable. Apparently, it is precariously close to a large blood vessel, and I could bleed to death quickly if it was severed. Cyberknife might be a consideration.

I have an appointment at Vanderbilt on Tuesday, March 18th to get Dr. Weaver's opinion about the tumor. Obviously, if it can be excised surgically, then all chemo would stop until that can be done and I heal completely.

So, there it is -- not a master plan, really, but an overview of what's coming up for me. In the meantime, my strength is improving every day, though I struggle with my appetite and that strange metallic taste. Still, I'm here, and that's no small accomplishment. It's time to make some big decisions, and to enjoy the small things that make living worthwhile.

I hope you're enjoying your blessings, too!

:-) Sharon

Another Dream Dies

Warning: This is a Moody, Moody Blog. I have tried for days not to write it. I don't want to blog constantly with gloom and doom or bad news. I want to be happy. I really do. I try so hard ... but my sorrow tonight is so deep that I feel compelled to write about it.

I violated the rules of the universe this week: I made a giant wish. I don't usually dream big or count on things before they materialize, but I indulged myself in premature happiness over something that hadn't happened yet but looked like it could at any moment. As I tenderly carried it home in my heart, the bottom fell out like a soggy grocery bag and I watched it shatter on the sidewalk, all of its delicate pieces splattering onto the grass around me while I clutched the empty bag and gazed in horror. I fell to my knees to salvage some of it, but there was no piece left that was large enough to hold in my hand. It's gone. Not going to happen. Guess that's what I get for dreaming, huh? Now I'm just feeling stupid for ever even thinking it might have happened. I should have known better than to get my hopes up like that. But I think I just needed something happy to cling to in these difficult days ...

There's no health news that anyone wants to hear. I'm sick, I feel terrible, and I have barely enough strength in my legs to transfer from chair to bed, etc. My hair is coming out; I don't how much I'll lose from the one treatment. I have no tolerance for cold. Every time I vomit I pee all over myself because my bladder is out of whack from the UTI. I can't stand the thought of food, and when I do try to eat the terrible taste in my mouth makes the food strange and unappetizing. The only food I can keep down reliably is chicken broth with a few crackers in it, and I'm so tired of it that I never want to see chicken broth again. I'll never get my strength back at this rate! And how can I even think about getting back into the battle like this? I can't say to the enemy: "Give me a minute! I'm hobbling back onto the battlefield as fast as I can!" The cancer is probably having a field day, happily dividing new cells left and right in my weakened body -- UNLESS the chemo is working, maybe just a smidge?

My faithful blog readers, callers, and visitors who come to the house to see me in my infamous lift chair wearing my big old gown all want to hear me say that I'm feeling great. It makes me happy that there are so many people rooting for me and praying for me. I want it, too! I want to wake up one morning with the birds singing and realize that I feel human again. I want to sit outside in my jazzy on a warm spring day and let the breeze wash over my tired body and soul.

I promise all of you that I am crawling out of this hole as fast as I can. Spring is coming and I won't let cancer rob me of the joy that it brings. Yellow daffodils in little clusters. Tiny buds on the trees that have stood naked in the shivering cold all winter. Bushes that bloom. Green grass where the brown crunchy stuff was. Caterpillars that become butterflies. So much joy. So much hope. So much life.

It's a lovely dream that I hope to actually hold in my hands very soon.

:-) Sharon

Just a Quick Update ...

03/08/08 UPDATE: Well, the mysterious source of my fever has been revealed. My old pal UTI (urinary tract infection) has settled in for a long visit, as she often does after I've been catheterized. I've had two days of antibiotics, so hopefully I will be feeling better soon.

-------------------------------

We had a little scare today when my temperature spiked to 101.5. For those of you not familiar with neutropenic fever, it's main symptom -- a temperature of 100.5 of higher (especially paired with flu symptoms) -- can signal an infection brought on by dangerously low white blood counts. I've been aching, chilling, and vomiting for days, so when we realized I had a fever, too, we called the oncologist's office. They insisted that I come in right away, so I cleaned up a little and we hurried to Knoxville. I was so terrified that they would put me back in the hospital that I cried all the way there.

I am please to announce that we got GOOD NEWS: my white cell count is NORMAL, my red cell count is only slightly off, and everything else looked fine except that my potassium is low. My lungs are clear, too. Since I won't actually reach the lowest point (nadir) of the chemo's side effects for another week, my local doctor's office will repeat the tests next Wednesday.

The long trip in my weakened state was an ordeal, but I happily came home and climbed back into my lift chair. I'll be so glad when I can get the effects of this stuff out of my system and start to regain my strength. There's a lot of things that I want to do that can't be accomplished sitting in my chair. That's okay. I'll take it slow. I'm just happy to have the luxury of time to heal and hope and -- LIVE!

:-) Sharon

The Very Next Thing

Well, it's official. The very next thing I am going to do is ... live with wild abandon. I'm going to eat as much ice cream (my current junk food of choice) as my beleaguered appetite will allow. I'm going to ride my Jazzy right out in the street so fast that the breeze blows back my hair. I'm going to talk and laugh and cry (Josiah has nothing on me!) and sing out loud (and believe me, I have nothing on him!) and dance (also quite scary) even if people are looking. I'm going to plan a summer vacation that we cannot afford and then worry about the grim financial details later. I'm going to venture out to town with my giant scalp tumors sticking up on my head like horns and my arms bruised and battered from the many i.v.'s (with the bandaid-shaped tape residue still marking the spots of torture) in my ill-fitting clothes that hang from me because I've dropped weight so quickly.

For some reason, I am deliriously happy ... okay, not delirious. Let's not use that word since people still like to double-check my mental acuity following my episode last week. (The kids like to give me math problems straight from their algebra books to make sure I'm really "all here" again!) I am unreasonably, undeniably, unalterably happy for absolutely no reason at all. I find myself grinning from ear to ear at the sound of a bird or the sight of an early spring daffodil. I watch the kids as they go about their daily routines and marvel at the wonderful gift of motherhood. I cried with joy when I was wheeled back into our messy home (always a sight to behold after a hospital stay). I laughed when the dryer tore up the minute I got home, smiled through three hours of last-minute Science Fair Project repair last night, and woke the kids with singing at 6 a.m. when it was time to do the school routine.

You see, I feel like a woman who has been given a second chance -- a reprieve, if you will, from the executioner and his dreadful song. I know I have terminal cancer and I can't walk and I look like a freak show, but I'm ALIVE and out of the hospital and here again in my crazy little world full of kids and bills and a messy house and algebra homework and a full calendar and worn-out appliances. This world -- my world -- is exactly where I long to be when I am away from it. And I'm NOT away from it. I'm here, and I want to savor every beautiful moment.

This does not mean that I'm not going to fight the cancer any more. Quite the contrary. I'm going to fight with everything in me to find a way to slow it down or maybe even stop it someday. I will admit, however, that it is going to be very hard for me to submit my poor old body to chemotherapy again. I wish there was some other way ...

Still, after seeing the effect that my coma had on my family, I am more determined than ever to battle as hard as I can. If I had any pseudo-noble notions about eventually throwing in the towel and "going gently" toward my terrible fate, those were torn from me forever by the stricken looks of fear on their faces when I woke up. For their sake, and mine, I must keep fighting and hoping -- and living.

:-) Sharon

Hello, Cruel World

Wow. Oh, wow. Let me introduce you to a new word for my dictionary of "Cancer Horrors": somnolence. It means: COMA.

It's one of the rare side effects of one of the chemo drugs I received (ifosfamide). We discussed it before the treatments began, and they assured me that it only happens to elderly people who are bedridden. I pointed out that I am mobility-impaired, and they reassured me that it's extremely rare and I'm so young ...

Fast-forward to Tuesday, my 2nd day of chemo. I was watching American Idol, and the guys were singing. I fell asleep, and I was having a wonderful dream. I felt like I was whizzing through space, and it was so peaceful. What I didn't realize was that my family had been thrown into utter panic. Don went home Tuesday evening to be with the kids. When Mom could not reach me by phone on Wednesday morning, she called the nurse who said, "To be honest with you, I haven't checked on her yet today."

This was enough to send Mom straight to the hospital. When she and other family members arrived, the nursing staff was still not concerned. (I guess I was the "perfect" patient, huh?) My family was screaming at this point: "We can't wake her up!"

Finally, the medical staff clued in to the true situation. I was in a coma. Josiah was supposed to fly to Indiana that day (or the next day -- I've lost a lot of time) to receive a car that an Indiana radio station wanted to donate to him and do a concert for them. He said, "I am not leaving Mama until I know she's okay." There's a happy ending to his story. The radio station brought the car to him, and they filled it with goodies for him. He is still going to do a concert for them as soon as he is home from California.

On Thursday, Daddy and Josiah threw a fit to have the chemo disconnected. A few hours later, my dear friend Janet came to see me. This is significant because she had surgery herself just one week ago. She didn't know what was happening, but she knew something was wrong when she couldn't reach me by phone or text. She cried and prayed all night, and decided by morning that she had to come to me. The sixty-mile journey to the hospital was her first outing since surgery, and it had to be hard for her.

Some time yesterday afternoon, I became aware that she was there. Even through the thick fog of my brain, I realized what a sacrifice it must have been for her. I knew I had to speak to her. It was hard to form the words, but eventually, I said, "Janet's here." Everyone in the room started cheering and clapping. I didn't know why until they told me I had been in a coma.

The Fallout of this included:

• A lumbar puncture (spinal tap) to rule out meningitis. (Yeah, right, I just happened to get meningitis at the same time I started a new chemo? Even I couldn't be that unlucky. Well, then again ...) When the test was over, I asked how long I had to lie flat, and I heard 48 hours. About 20 hours later, when I was coherent enough to double-check, it turned that he said 4 - 8 hours.


• An MRI that took three attempts because I wasn't in my logical brain yet, and I just panicked. The MRI showed a small lesion on the brain wall, but nothing that could have caused the coma.


• Profuse vomiting, with so little warning that I often vomited all over myself.


• 2 units of plasma and now 2 bags of blood.


• X-rays of my stomach (because of the vomiting?).


• No solid food since Tuesday.


• Problems using my hands (fine motor skills).


• Weak, weak, weak body and confused mind.

So, where do we go from here? Home, first, hopefully. Then I will have to rebuild my body and re-assess the game plan. The doctor said we could lower the dose and try again, but I gave a resounding NO. I will NEVER put that stuff in my body again.

And I find myself so thankful for my family and friends. Where in the world (or out of the world) would I be without them? Here's hoping all of you are surrounded by people who love you. I've never been surer of that in my life.

Prayers and happy thoughts are certainly appreciated as I regroup and rebuild.

:-) Sharon

Striking a Balance

I've been doing a lot of thinking this week about the best way to strike a balance in my life. Granted, things are not normal around here these days, and sometimes I expect to hear Rod Serling's voice coming from my walls, pronouncing, "Sharon Leming doesn't know it, but she's just stepped into The Twilight Zone". (Cue creepy music ...)

Balance is such a critical element of life in so many areas. Faith vs. Fear. Relationships vs. Individual needs. Fighting cancer vs. Enjoying life.

Right now, things are a little overwhelming for me. Physically, I'm very tired, and I'm mentally exhausted. I'm trying to accomplish a pile of mundane tasks that need to get done before I am in the hospital all week (and since I don't know how I will feel when I do get home). But it seems like the more I need to do, the less I am able to get done. I seem to be crippled by the magnitude of all the little things on top of all of the big things right now.

Yes, I need to clean and organize -- but I also need to rest and prepare myself. I need to fight the cancer -- but I also need to enjoy every minute of LIFE while I can. I need to use my energy for the battle -- but I need to be a wife and mother and sister and daughter and friend to those who love me.

How do I reconcile all of this? You might say that I need to slow down, but if I slow down any more Don will have to curl me into a ball and roll me around town. Haha! I just need to calm down, breathe, and live life one day at a time. I know it sounds like a cliche, but for me right now, if more like a mantra. One day. Just one day, Sharon. You can do this. You can do anything for just one day.

I comfort myself with these thoughts. I don't have to plan our entire future or fear the inevitable. I only have to get through one single day -- and this one is ready to be folded like an already-read newspaper and laid aside.

Sweet dreams to us all,

:-) Sharon

The Plans are Made

Hello!

After a wild week of appointments and other forms of insanity, we now have a game plan for my cancer treatment. The Vanderbilt appointments went well. I was hoping to give an update while we were in Nashville, but I couldn't connect to the "high-speed" internet at our bargain hotel (as usual). Sigh ...

This morning we returned to Dr. Ibach's office. After reviewing the test results and discussing the options, we decided to do the more aggressive chemo. This has always been his recommendation, and Vanderbilt's oncologist agreed. (This is the one with lifetime limits, due to the cardiac side effects and overall toxicity.) It is called MAID, and it is actually a combination of 3 chemos and 1 bladder protectant. I will have one treatment each month for three months, then tests. Each time I have a treatment, I will have to stay in the hospital for a minimum of five days. I told him that I would need time to get things in order here at home for Don and the kids, so we scheduled my start date for one week from Monday. When the appointment ended, I sat at the checkout desk near my folder -- the one that says Sharon Lemmings, with one M and the S crossed off after the fact -- while they made the arrangements to check me into the hospital on the 25th. I felt tired, and numb.

I have a confession to make. I did something today that I vowed I would never do: I asked the question. You know -- THE question. The "what happens if I just do nothing" question. The "please stamp an expiration date on me like a slab of meat at the supermarket" question.

I don't know why I did it, but I asked. I was feeling panicked and hoping for an easy way out, I guess. Anyway, I asked. And he obliged with a number that will remain unspoken in the secret places of my mind (and Don's). It was such a brief number that I had to catch my breath -- just a short season, not nearly time for all of the things I need to do and want to do and have to do. I felt like all of the air had been sucked out of room, and everything went spinning. (I didn't cry, because I had already shed plenty of tears when the doctor was out of the room consulting his partner to determine what level of toxicity we should choose given the aggressive nature of leiomyosarcoma and the advanced metastases shown on the recent scans.)

This means, obviously, that I have no choice but to keep on fighting. I've got to summon the courage to endure this chemo with its side effects and necessary hospital stays so that I can keep that candle of HOPE burning. It's flickering tonight, casting long, dark shadows on the walls of my heart. Its flame may be as weak as my tired, rundown body, but it's still alive.

Hope is alive, and I'm still alive -- and I'm going to fight as hard as I can to stay that way.

:-) Sharon

P.S. -- Josiah's fans are the greatest! Thanks so much for all of your kind wishes and prayers for my health and our family. I do pass the messages along to him when I can, and he is very thankful for his wonderful fans and supporters.

I know you came here looking for him, but you are welcome here, too. I wish I could reply to each of you individually, and maybe eventually I can, but I do read every message and I appreciate and enjoy them very much.

Saturday Night

First of all, I'd like to say hello to all of the people who have found me when searching for Josiah. I appreciate your nice comments and well wishes. In your honor, I will answer a few of the most common Josiah-related questions:

1 - I was trying to contact Josiah, but I ended up here. How can I contact him?
You can reach him at his myspace page: http://www.myspace.com/josiahleming.

2 - Did you know he was living in his car?
We did not know he was living in his car at that time, but we did know before the show aired last week.

3 - What do you think of the British accent?
Actually, I do not notice the accent when he speaks or sings. I guess I am just accustomed to hearing him.

4 - Why is he separated from his family? Don't you love him?
I love Josiah very much, and he is very close to his family. There are no musical opportunities near us, so he wants to be near a larger metropolitan area where he can play his music and make better contacts.

5 - How do you feel about his lifestyle?
I don't always agree with the decisions he makes, but I respect the fact that it is his life and I am 100% behind him all the way.

Okay, on to health news:

Don and I will be leaving on Monday to head to Nashville for my appointments at Vanderbilt on Tuesday and Wednesday. I will be seeing the oncologist, the hip/femur surgeon, and the spinal surgeon. I will also be having a slew of tests.

On Friday (the 15th), we will see my new oncologist in Knoxville to make my final treatment decision.

I really hate the way those appointments wear me out, mentally, physically, and emotionally. They make me FEEL like a cancer patient!

Please pray that we will get all of the data we need to make the best decision for my future.

:-) Sharon

Things that make me happy ...

Hello! I'm home now, managing my blood clots with medication and frequent blood draws. Thanks to my Greenfield filters, which prevent clots from going to my heart and lungs, I did not have to stay in the hospital until the clots are completely gone.

Since life has been gloomy and heavy lately, I decided to make a list of things that make me happy.

• Rain
• 80s music
• Quilting
• A good book
• The beach
• Chocolate
• Bargain hunting
• Eating ice
• Swimming
• A good game of Scrabble
• True friends
• My family
• NOT being in the hospital
• Green, glorious spring
• Riding in a car with the windows down
• Roses
• Easter
• A warm, cozy fire in the fireplace
• Fresh-fallen snow
• A good night's sleep

It's so easy to let the fear and the pain take over my life, like weeds choking out all of the beautiful flowers in my garden. Fighting against them is a large part of the battle for me these days.

I can't let the fear consume me, because that would mean the cancer has won. There are still a lot of good things in my world. I just need to relax, breathe, and take a little time to savor them.

I hope you're taking the time to enjoy the good things in your life, too.

:-) Sharon

It was a clot ...

Actually there are 2 clots in my right leg.

Because of this I am in the hospital tonight.

Will update tomorrow.

:-) Sharon

The Results are in ...

Well, I have some of my test results. I have a written copy of the CT scan reports, and if I only understood the medical terminology a little better I might could make some sense of it. LOL!

I received a return call from the new oncologist's office this morning, just as I had started eating my bowl of Captain Crunch (the breakfast of champions, right?) I'm sure she meant well, but the first thing the lady told me was: "Your test results were worse than we expected."

I was thinking: "WHAT? How can it possibly be WORSE than expected? I have TERMINAL CANCER, so advanced that we are considering a chemo that is so strong and so toxic that I have to undergo heart tests to make sure I am strong enough to handle it ... what could possibly be worse?"

Anyway, she didn't want to give an explanation of this bold pronouncement, so I prodded a little about the bone scan. I figured I could keep trying to interpret the CT scans a little at a time, but I don't have a written report of the bone scan. She then proceeded to drop the bombshell (which, to her, may not have even been THE bombshell, because there is evidence of spread to new places): the cancer in now in my other hip. That's right -- my OTHER hip. You know, the "good" leg, the stable leg, the one I've counted on to be strong and sure. Suddenly, I lost my appetite and felt like I was going to be sick. All I could think was, "Not again. Please, not again!"

There is no change in the current plan to see the doctors at Vanderbilt February 12 and 13, and then return to the oncologist's office on February 15. He'll give me the full interpretation of the reports and we'll make the final treatment decision on that day.

As if this isn't enough for one week, I think I have a blood clot in the other leg -- the "new-improved leg" -- at the top of my calf behind my knee. Very painful. Makes me cranky.

So, please be praying for us as we plan our trip to Nashville. I really, really appreciate all of your love and support.

:-) Sharon

P.S. -- Amanda, if you're reading this, or if someone else in the family is reading this and sees you, I want to you know how terribly, terribly sorry we are about your loss. I wish we could have made it to the memorial service. We'll be praying for you and Hayley, and we love you very much.

P.P.S. -- Uncle Jim, I saw your message on my previous blog post, and I tried to reply to it, but it wouldn't save my comment. I truly do appreciate your prayers. We love and miss all of you.

More Upcoming Events

Hello, everyone! I have been feeling fairly well this week and have actually accomplished some of the things on my long-neglected to-do list. If the low-iron issue is dragging me down, it would be nice to see how I would feel with my iron in its normal range again.

Latest schedule of tests / appointments:
1/18/08: CT scans, bone scans
1/21/08: MUGA scan (to check my heart function due to the potential cardiac side effects of some of the stronger chemo choices)

2/12/08: Followup (at Vanderbilt) with Dr. Holt from hip / femur surgery. (This will include tests - probably just x-rays.) Appointment with Dr. Sandler to get his chemo opinions. Tests to check on my spine.

2/13/08: Followup (at Vanderbilt) with Dr. Cheng from spinal surgery.

2/15/08: Return to Knoxville to see Dr. Ibach and make final chemo or treatment choices.

For some reason, I am feeling a lot of anxiety tonight. I guess I am a little nervous about the upcoming tests / results. I'm worried that some new horror will arise, or that some old horror will rise again. Both Dr. Ibach and Dr. Cheng's assistant asked me on Monday if I had noticed any weakness or loss of strength in my legs (or any other spinal symptoms). Since I really had not been concerned about my spine recently, it made me realize the awful possibility that this COULD rear its ugly head a THIRD time. Argh!!!!!!!

It's quiet here tonight. Don built a beautiful, hot fire and it soothes me as it dances and crackles. The kids are hoping for snow tonight. I am hoping for the same thing I want every day and night -- peace, in our home and in the world.

:-) Sharon

Doctor's Visit Today

Hello!

I had an appointment at Thompson Cancer Survival Center in Knoxville this morning to meet my new oncologist, Dr. Ibach. Josiah went with us. I was a little worried about what he might hear, but it was actually fairly tame, all things considered. (It's not that there's anything he doesn't know, but doctors tend to be very grim when they go over my diagnosis and prognosis for the first time. Remember the visit when Eric was with me and got really freaked out by what that doctor had to say?)

Dr. Ibach says that I am doing extremely well considering the tumor load in my body and the length of time I have been battling LMS. He scheduled me for a CT scan and bone scan on Friday (the 18th) to re-stage everything and see how much disease progression there has been since my last scans. He also wants me to have a MUGA scan later to check my heart function (in case we decide to use an adriamycin-based chemo). If it's possible to get an appointment soon enough, I am going to see Dr. Sandler at Vanderbilt again to get his input on the best chemo choice at this point.

Blood work today showed that my iron levels are still low. I am going to try to take it orally again. (Just thinking about it gives me a stomach ache!)

Overall, I felt like the appointment went well. I'm still a little nervous about the long delay between treatments, but I agree with Dr. Ibach that it's a good idea to see exactly where we stand and to take time to choose the best and least-toxic-but-possibly-effective treatment choice.

Oh, and speaking of Vanderbilt, I have two other appointments coming up there: followup from hip/femur surgery on 2/12 and followup from spinal surgery on 2/13. Hopefully we can get an appointment with Dr. Sandler, too, to get his input.

Please pray that the test will go smoothly on Friday, and there will be no significant disease progression other than the micro metastases.

:-) Sharon

It's Moving Back In ...

I've been waking up with terrible stomach aches for about a week now. Today, I realized their probable cause. We went to Knoxville, and during our several hours there, we passed numerous ambulances with lights flashing and sirens blaring. Each time we heard one, that same angry and acidic feeling hit the pit of my stomach. I feel like I need to throw up, but can't. It's like my stomach is pretzel-shaped, and someone is pulling on each loose end, making the knot in the middle tighter and tighter.

I realized that I am terribly frightened and anxious.

I'm finding it harder to face chemotherapy the second time. I know the horrors of it all too well:

• The constant vomiting -- when I sit up in the morning, in the shower, in the car, every time I smell food cooking. When I can eat, I am VERY careful to choose foods that are not absolutely disgusting coming back up. (I'll spare you the details of that one.)
• The clumps of hairs that fall from my head and cover my clothes, so much that I am afraid to prepare food or even be in the kitchen very often, and keep falling until I am bald and freakish and must wear an ill-fitting, hot, uncomfortable wig or toboggan every time I leave the house. (I absolutely refuse to cover my head at home, no matter how I look. Consider yourself forewarned if you come to visit.)
• The horrible metallic taste of food and drinks and the sores in my mouth and throat that would render eating a lost cause even if I could taste anything.
• The utter, absolute exhaustion that makes me feel like I am glued to my chair, keeps me in my nightgown all day because I lack the energy to get dressed, and forces me to keep a porta-a-potty nearby since going to the bathroom and back is an acrobatic feat.
• The low blood counts that make it risky for me to be in public, and make me ultra-paranoid about germs around the house.
• The "chemo brain" effects on my mind and memory which make me feel so stupid and incompetent that I use a calculator to figure the kids' lunch money -- when for years I was able to add the groceries in my head and calculate to the penny the amount I would need at the checkout counter. (I was a computer programmer for nearly 20 years, and now I'm lucky to remember my login password.)
• The long days in the chemo ward, surrounded by pitiful, pale, shrunken, twisted beings who are probably thinking the same thing about me. (It's so hard for Don to bear that he nearly trips over himself getting out of there after he gets me settled into a chair.)
• The bouts of fear and anxiety in the middle of the night when I feel panicked and alone, and have to calm myself and convince myself to keep breathing (although ironically, I can no more stop my own breathing than I can stop my suffering; in other words, I'm powerless against all of it anyway).

The bottom line is: I just don't want to do this again! Still, I know the cancer is growing. If I just sit here and do nothing, it WILL kill me eventually, and it will have the power to choose its own method of doing so. If I want any control over it at all (realizing, of course, that it's only pseudo-control), I have to keep fighting. Even so, it's hard to shake the "lamb to the slaughter" feeling I get every time they hook the i.v. full of poison to my chemo port.

My appointment to choose a chemo regimen and schedule its start date is Monday, January 14th at 10 a.m. Please pray that when the time comes, I will find the courage and the grace to do this again. It won't be easy, but the alternative is simply unacceptable.

:-) Sharon

So Much Sorrow!

I've taken a spell lately where I can hardly bear to hear or read or see anything sad. For a long time now, I've steadfastly avoided anything overtly sad -- movies, songs, books. But I can't avoid sad things in real life!

Today, we saw a bird carrying what looked like a piece of orange peel in her mouth as she flew across a busy road. A car startled her, and she dropped it. For some reason, this really bothered me. Don pointed out that she probably went back for it after the cars cleared, and then I felt a little better.

Yesterday, I learned that one of my dearest, tried-and-true, always-there-when-you-need-her friends has cancer on her thyroid. She is going to have her thyroid removed and has been told that her type of cancer is very treatable, usually with excellent results. Still, I am devastated. She is taking the news well, with complete faith that it's in God's hands and just wanting the surgery as soon as possible. I'm really proud of her attitude. I, on the other hand, just can't seem to shake the "it's not fair" feeling on her behalf.

As a whole, I just can't seem to handle sorrow any more. I've never been able to bear seeing someone's obvious vulnerability. It always bothers me in ball games or other contests that both sides want it so badly, and yet there has to be a loser as well as a winner.

This carries over into my personal outlook on life. I avoid conflict whenever possible. When I was healthy, I always tried to be extremely self-sufficient so that I did not need to depend on other people, giving them the opportunity to disappoint me. This is impossible now, of course, and sometimes I get really depressed about the fact that I require so much daily assistance. It hurts my feelings terribly when someone is hateful to me about something that I need, and then I get angry because I am so helpless.

I need some happy news. I need for things to go well for us for a while. I need to feel hopeful, or maybe even downright carefree, even if it's just for day.

Maybe I just need spring to come ...

:-) Sharon

Happy New Year!

I'm the eternal optimist, and I truly have hope that 2008 may be a better year for us.

-

The track record of the past few years hasn't been great:

2004 - Surgical biopsy in June revealed that numerous (read: inoperable) tumors in both lungs were LMS. Stopped working in August due to my deteriorating health. Stopped driving due to worsening, undiagnosable leg pain.

2005 - Crippling leg pain caused by LMS led to shattered femur in June, followed by spinal tumors that rendered me paralyzed from the waist down on December 26th. (Merry day-after-Christmas to me!)

2006 - After spending FIVE months bedridden from the spinal tumors, I slowly regained use of my legs and bladder/bowel control after radiation and surgery. Started chemo in September.

2007 - Chemo until mid-February, when we learned that the cancer had fractured my hip. Major surgeries in April (hip/femur), August (spinal tumors were back with a vengeance), and October (giant neck tumor and super-painful tongue surgery). Radiation for dangerous lung tumors in May.

-

SOOOO -- this means we are surely due for a kinder, gentler year. Right? I know the odds are against it, but it could happen. I don't want to give up on the possibility of a cure, or a successful chemo regimen, or even a downright miracle ... I cling to it, the tiny glimmer of light that leads me through the difficult days and the demanding treatments and all of those dark, desperate nights when the fear overwhelms me and I sit on the side of the bed trying to coax myself to keep going and to NEVER GIVE UP.

-

If I lose this dream, what will I have left?

-

Welcome, 2008! Here's hoping, for all of us ...

-

:-) Sharon

-

P.S. -- Yes, I have faith that God is 100% in control of everything that happens. This is a tremendous comfort to me in dark times. However, faith in God is no absolver of suffering. Look at Job ...

The Day After Christmas

We had a great Christmas, but I have to admit that I'm somewhat relieved to move on beyond it. Everything went reasonably well, and it's always great to spend time with each other and with our family and friends. Still, a major holiday like Christmas takes a lot out of me. After a while, I find myself resentful of all of the things I CAN'T do because I've put all of my energy, time, and money toward Christmas.
-
I personally have always enjoyed watching the new year roll in. Everything seems possible; that's why we make all of the new year's resolutions. "This year, I'm going to be a smarter, healthier, better person." And why not? Here's a blank, white, empty page of my life just waiting for ink. I can't wait to start writing on it ...
-
This photo of me was taken on Christmas day. Can you see the tumors on my scalp (they're the reason for the strange, wide part in my hair)? At last count, I felt around 80 of them on my head, and -- like many of my micro metastases -- they are growing. If you look closely, you can see another one to the right of my chin, just under my lip.
-
The butterfly necklace I am wearing in the photo was a Christmas gift from Autumn. I fell in love with it when we were shopping at the mall, and she sneaked back to the kiosk and bought it for me. I love butterflies and the freedom they represent. (Do you remember my post, long ago, when I watched several butterflies dancing and playing outside of the chemo lab window?) I plan to wear it when I restart my chemo treatments next month to cheer myself.
-
Speaking of butterflies, I FINALLY finished the butterfly quilt I was making for Lacey! It turned out really well; I will try to upload a photo of it soon. I have already started a patchwork quilt of 4" squares. I take it with me to appointments and sew squares of four patches. Now I have a whole stack of foursomes ready to be pieced together into a top. I haven't decided who will receive this one. Each quilt takes on a personality as I create it, so I like to wait until it takes shape to choose its owner.
-
So, I'm just going to kick back now and relax until 2008 arrives. (Of course, we all know how relaxing my life is, right?) But, hey, I can try ...
-
:-) Sharon

Shades of Winter

Last night I was reminded again that you can never overestimate the emotional toll that cancer takes on a patient's family, especially the children.

Following one of Andrew's angry outbursts (accusing me of being lazy rather than sick and of causing all of his current difficulties), Josiah tried to help the situation by having a talk with him downstairs in the den. He reminded Andrew that I have a terminal illness and we really don't know how long I have left, and that he (Andrew) should be helping promote harmony in the family rather than strife so that I can have some peace.

All of sudden, Autumn burst out of her bedroom, screaming, "Mom IS NOT going to die! Mom IS NOT going to die! How dare you say that?" She told them that she hated them both for making things harder for me. Don had to bring her upstairs, where she got onto the floor on her knees and beat her fists against the carpet, screaming over and over again, "Mom IS NOT going to die!" She was shaking uncontrollably and crying. She was so upset that I felt we needed to get her out of the house for a while, so I called her best friend's mother (our neighbor) and asked if she could please spend the night over there. (I knew they would be able to console her, because they have done so in the past.)

After she left, Josiah and I sat together in the family room, and we both cried for a long time. It's extremely hard for them. As our oldest three children, Andrew, Josiah, and Autumn are more aware of the gravity of the situation (although, apparently, Autumn has a great deal of denial going on) and it's hard on them. They were 12, 11, and 10 when I was diagnosed, so they have grown up in the shadows of my battle against cancer. They have watched me disintegrate from an active, healthy woman who worked, taxied them around town, volunteered at church and school, and loved to travel to a pain-ridden, hunched-over slowpoke on a walker or in a wheelchair. They have seen me suffer from surgeries and chemo and radiation -- and even though they cannot truly understand the depths of my physical suffering, it has been heartbreaking for them to watch my descent into this remnant of my former self.

There's no way that you can argue that this has not played a part in shaping who they are today, and who they will become in the future. I only hope that it teaches them faith, and compassion, and perseverance. After all, my children are my legacy. They are all that will remain of me in this world when I am gone. I don't want them to waste time grieving when I am gone. I hope they think of me, of course, and smile when they remember the woman who is so cheap that she puts clearance-sale Halloween candy in their Christmas stockings and who loves 80s music and the ocean.

But I don't want them to dwell on the sorrow of it all. I want them to LIVE ... and I want to live, too.

Wishing you peace in your corner of the world,

:-) Sharon

P.S. -- Yes, it affects the younger children, too, but thankfully they do not understand to the degree that the older ones do. They thrive on normalcy, so we try to keep things as normal around here as possible, even when I am running the command center from my hospital bed in the family room.

Mid-December?!?

Incredibly, I find myself in the middle of December. I've been so busy running, shopping, planning, wrapping, baking, writing, organizing -- I guess you could call it "living" -- that time has been flying past me. (Of course, when you move at a turtle's pace like I do, it ALWAYS seems like time and life and the whole wide world is rushing past you on an Amtrak train.) Anyway, I've finished my shopping and I only have a few more cards to send and I definitely need to stop baking RIGHT NOW because all that fudge is just TOO tempting ...

I will meet with the new oncologist one month from today. One month. 31 days. 732 hours until my appointment. I am going to walk around with that unbridled monster wreaking who-knows-what kind of havoc inside of me for 31 days. Will I regret the delay? Have I made a fatal error by taking a break from treatments?

It was the soonest appointment I could get. Apparently, medical professionals like to take holiday breaks, too. I can't blame them. Dealing with cancer day-in and day-out must be a very intense profession. I know it's an intense way of life.

If you've read my blog for a while, you remember that I had this same self-doubt when I took some time off to heal during the summer. In the end, I needed that time to build my immune system for the spinal surgery. I also enjoyed every last moment of those lazy, happy summer days. I do not regret it for one moment, and I refuse to regret this time either -- no matter what the consequences may be for the future.

This IS my life, right here, right now. Who knows about next Christmas? Who knows about tomorrow? Only God, and that's the way it should be. While I pray that He will grant me many more Decembers, right now this is the only one I have. I am going to slow down and savor it like a good piece of fudge -- or hey, maybe WITH a good piece of fudge. :-)

I hope you are also taking the time to enjoy all of the peaceful, lovely, happy things about the Christmas season. I know there is a lot of hectic activity, but the joy is there, too. it may be hidden under 15 unwrapped gifts and a mountain of not-sent-yet Christmas cards, but it's there -- a buried treasure waiting to be discovered. It can't be bought in any store, at any price.

I hope all of you have many magical, peaceful moments this December.

:-) Sharon

I'm Thankful This Week ...

... for friends who can talk us down from our fences. Thanks, Bonnie, for helping me through a very difficult evening earlier this week, and CONGRATULATIONS for completing your coursework this week! You've been a true friend to me since I was an awkward middle-schooler, and I am eternally grateful that we met.

I went to our local cancer center today to have my port flushed, and to have some blood work done to try to find out why I am so very tired and oomph-less these days. I'm not sure if I've told you, but I haven't been able to resume my water therapy as I had hoped after my last surgery because I just don't have the strength. I drag through every day with NOTICEABLY less energy than I had in mid-October (before the neck/tongue surgery). Since I was anemic based on the pre-ops, I'm afraid I might have low blood counts.

With the holidays on the horizon, I need to have more stamina. Of course, I also need it to fight this cancer, clean the house, balance the checkbook, taxi the children, and to LIVE!

Please pray that whatever it is will be easily treatable, and that we can carry on with our plans to enjoy a "holiday break" from treatment.

:-) Sharon

Rolling through the Seasons

My mother-in-law brought me a 2008 calendar today, and it occurred to me for the first time that we will soon close the chapter on another year. The days that mark the passage have come and gone again: New Year's Day. Valentine's Day. Mother's Day and Father's Day. 4th of July. Labor Day. Our wedding anniversary. My birthday. Thanksgiving. Only Christmas remains, and it will pass as always in a frenzied flurry of activity and preparation until I'm left breathless and sentimental as we clean up the wrap and the boxes and pack away the decorations until next year.

Next year. It's a luxury that none of us can claim with any assurance. Still, my likelihood of being here a year from now is markedly slimmer than that of most of my peers. Those of you who have read my blog regularly know that every holiday makes me pause to contemplate my future. Will be here this time next year, trimming the tree and hiding gifts in my bedroom closet?

Will I worry about this every holiday (and every ordinary day) for the rest of my life? When will I ever be ready to say that I've had enough of my beautiful life and I'm ready to succumb to the cancer? The answer, of course, is "never". I want to BE here, like everyone else. And I want to have the REASONABLE EXPECTATION of being here, like everyone else.

This is, undoubtedly, the worst part of living with cancer. I can endure the many physical miseries and humiliations, and I can even learn to live with my body's many limitations, but I cannot fathom being cast out off of my little island. It just doesn't seem fair! I don't care to suffer (if I must), but I don't want to die.

I know, I know. I'm a broken record. Yes, but so far, I'm still here, rolling through the seasons with everyone else. For that, I'm truly thankful.

:-) Sharon

Mid-November Update

Hello again!

I was able to get my laptop running again, so I can finally spend some quality time on it!

I am feeling well, mostly, these days. We have been passing around an aggravating bug. It's not so much a stomach thing; it consists of a bad headache, body aches, mild fever, lethargy, and complete loss of appetite. Of course, it can't resist my worn-down system, so I've had it several times.

For everyone who is wondering "what's next" in my cancer battle, here's the schedule of upcoming events:

12/07 - Followup with neck surgeon / advice about growing eye socket tumor
1/09/08 - Followup with spinal surgeon in Nashville
1/14/08- Appointment with new oncologist to plan / start chemotherapy treatments
2/08 - Followup with hip/femur surgeon in Nashville

I might actually try to combine the two Nashville appointments into one trip in February. January 14th was the soonest appointment I could get with the new oncologist, but it falls into line with my plan to enjoy the holidays without cancer treatments.

Yes, I know it's risky, and yes, I do get scared sometimes that I am delaying treatment to my own demise. Still, my body has had a difficult year, and I need the time to rest/recover/and -- yes -- live! Last Thanksgiving, we hosted the family dinner even though I was on chemo, nearly bald, and could barely stand the sight/smell/taste of food. This year, I want to celebrate the fact that I am still here, have hair, and actually like food again.

I want to count my many other blessings, too: God's love, my family, my home, my (relative) health, and the many people who helped me get through this year with its many challenges.

I hope all of you are going to spend time with your loved ones this Thanksgiving. In spite of their quirks, flaw, and imperfections (and ours!), the bond of family and friends is the stuff that makes life worth living -- and worth fighting to be here to enjoy.

Happy Thanksgiving!

:-) Sharon

Computer Woes

Hello again! I won't be blogging as often for the next little while because my laptop needs repairs. I am embarrassed to admit that I am considering sending it off to be fixed instead of doing it myself. If I do, it will be the first time that I have ever paid someone to repair one of our computers or peripherals. I have always done so myself, including the time I resorted to building myself a pieced-together desktop while bedridden after Andy and Derrick scuffled and broke the screen on my first laptop. It's different for me now, though. This laptop is the only one I have, and I am so easily overwhelmed by tasks which require concentration that I am hesitant to tackle it.

Of course, since I'm the original cheapskate, I will repair it myself if the cost is too high. I can't bust the budget, especially with Christmas coming.

Health wise, I am doing okay right now. Flaming tongue hurts a little less each day, unless I eat something that requires a lot of chewing. I am going to try to battle the anemia with iron supplements and vitamins until I see my oncologist, who may recommend Epogen or another treatment to build up my red blood cells.

The tumor on my left eye socket is growing. I may need to have it removed before I resume chemo at the first of the year. You can imagine how keen I am on the thought of another surgery, but I cannot risk my eye.

I'll be able to return to aquatic therapy next week. Hurrah! I am walking much better on the cane these days, so I'm trying to increase my walking here at home. I'm still not to the point that I can do without my wheelchair in public, but someday I will be.

Sigh. Someday ...

:-) Sharon

S-C-A-R-Y Vocabulary

Every day is Halloween for the cancer patient, who gets to learn the meaning of terms like these:

alopecia = hair is overrated

chemo brain = what was the question again?

contrast dye = you'll glow in the dark

curative = you'll live, but with torture

grade = exactly how toasted you are

inoperable = we can't cut it all out

late term effects = the gift that keeps on taking ... and taking ... and taking

malignant = cancerous
metastasis = it's BAAAAACK! / mestastases = it's BAAAAACK, with friends
myelosuppression / immunosuppression = your body's defense system is toast
nadir = rock bottom
palliative = you're doomed, but we'll keep you sedated
radioresistant = we can't fry it

tradeoff dilemma = benefit of treatments versus quality of life

trial drugs = you may grow horns

tumor load = the total net "weight" of all tumors in your body

Frightful, huh?

:-) Sharon

Anniversaries and so on ...

Today is the seven-year anniversary of my first cancer surgery, the removal of my cancerous right ovary.

When I think of all of the changes within me over the past seven years, there are, of course, many positive ones along with the obvious negative ones. Does that make me thankful for the cancer? Not especially. I am grateful that I am still here with my family, and I truly still believe that the Lord makes no mistake and that He knows better than all of us. We can't expect to live in this world and not share in its suffering.

Does this make me a survivor? I guess you could say that. I'm still here, right? But if that's the only gauge, then aren't we all "survivors" until death overtakes us? I don't want to be a mere survivor, clinging to life like a stubborn, solitary leaf in a November tree. Instead, I want to be an OVERCOMER -- someone who lives, and lives WELL, in spite of the ravages of cancer. I want to slough off my mourning for the past and move forward with confidence and faith and happiness. I want to take a vacation. I want to shop for Christmas. I want to climb down into the beautiful blue water and swim until my lungs are ready to explode. I want to eat real food again and savor every bite.

For just one moment, I want to feel CAREFREE again. I realized the other day that I have not felt that way in a very long time. It was Saturday (just three days post-surgery, which certainly contributed to my moodiness), and we were at Kmart. They were having some sort of pre-Halloween sale, and it seemed like the whole world was getting ready for a party to which I received no invitation. In the fog of my pain, I envied their blitheness, their ability to ignore the fact that everyone dies and many suffer terribly beforehand, their impatient oblivion as they pulled their children by the hands through the line and hurried out to their SUV to race to the next celebration.

I want to be one of them again! Or do I? I don't know. What I do know is that when the cancer finally kills me (if it does), I want those who pause to grieve for me to pronounce that cancer did not win -- it may have battered my body with wave after horrible wave of sorrow but could never win against my soul -- and that I managed to do a whole lot more with the blessed gift of days beyond diagnosis than just survive.

I want to truly live.

:-) Sharon

The Second-Day Curse

It happens every time after surgery. I come home, feeling like the world is mine again, and then it hits me: the second-day curse. Maybe it is the removal of the good pain stuff that they give me at the hospital, or maybe it is triggered by the onslaught of phone calls and visits from my beloved friends and family, but no matter what its cause, it is miserable. I hit a mental and physical wall, and it forces me to accept the painful realization that I have a lot of healing yet to do.

I am managing the pain with Tylenol and ibuprofen. It is worse after eating, or when I have been asleep and my mouth is dry. My tongue feels like a giant flame, and food is a very painful subject right now. After slurping tomato soup and chicken broth on the "good" side of my tongue for several days, I braved a dish of gravy and biscuits for supper tonight. Don made his delicious gravy, and Autumn added her tender homemade biscuits. The combination was perfect: warm, comfort food that was also soft and tasty.

Still, I'd much rather be home (and a little uncomfortable) than back in the hospital. I have my family here, and my laptop, and Don even built a warm fire for my cold feet. Time is on my side, and each day should be a little easier from here.

:-) Sharon

We're Back at Home!

We got home from the hospital this afternoon around 5:30 p.m. My tongue is sore, but my neck is not hurting at all, and my strength is good.

As Josiah explained, the surgery itself took about three hours, and I spent an additional three hours in the recovery room -- not because I was vomiting, but because I could not wake up enough to be moved to my regular room.

With Janet's help and the help of two nurses, I was able to get up several hours later for a trip to the bathroom. My legs were sturdy, and I was not wobbly at all. (My gown, on the other hand, did not want to stay on at all!)

My tongue is swollen, and this makes swallowing difficult. I have to aim everything on the other side of my mouth. I am on fluids, soups, and ice cream right now, but I can already see improvement over yesterday. I had morphine overnight at the hospital, but nothing since early this morning until I took a Tylenol a few minutes ago.

So, here I am, home again and ready to resume normal life. No matter the length of the hospital stay, there's no feeling quite as wonderful as coming home.

:-) Sharon

the post surgery report with Josiah Leming

My mother came out of surgery very well! she was in surgery for about 3 hours and in recovery for about another 3 hours. when she came to the room she was thirsty but feeling pretty well, all things considered. thanks for all your prayers and support!
Josiah Leming

Take a Long Last Look

I knew you all would want to see that giant neck tumor ONE MORE TIME before I have it removed tomorrow! This lovely shot was taken by Janet at the ladies' meeting Saturday night. You can also see a scar on my check; that's one of the ones left from my last surgery. I was positioned face down, with my face pressed against whatever held me. I woke up with several very sore spots on my face, and now I have scars there.

Well, everything's set for my big day tomorrow. I'll check in at 6:30 a.m. and the surgery is scheduled at 8:30 a.m. It should take 3 - 4 hours. I'll ask Josiah to post an update tomorrow evening.

There are other things happening here at the house that I can't really write in a blog. Please pray for our son Andy, smooth surgery and recovery, and peace and harmony here at home for Grandma and the kids.

I'll be with you again as soon as I can, with an "after" photo to show off my tumor-less neck!

:-) Sharon

In Days to Come ...

I thought you all would like to know that I am feeling better now. I had my usual pre-surgery, day-of-pre-ops meltdown on Thursday, and that's when I wrote the previous blog entry (even though it did not post right away). Pre-ops are a terrible "reality check" for me, because it makes the coming surgery seem so close, AND they wear my tired old body down to the point of exhaustion. It feels like the doctor pronounces, "Hey, you're so sick that we're going to have to cut you open and rearrange your innards, but first we're going to subject you to a full day of tortuous tests, painful blood draws, and uncomfortable positions that an acrobat could not possibly maintain!" Seriously, though. Don't they realize that I'm not in peak physical condition? They should, since they're the ones who love to pronounce doom and despair every time I visit them.

Anyway, my mental outlook has improved, although life certainly hasn't slowed down for me this weekend. After my very busy day on Thursday, I ran errands on Friday and then went to dinner with our dear friends Friday evening, cleaned house and attended a Ladies' Meeting at our church on Saturday (where I CLIMBED STEPS up and down with my cane to get into the building!), and then fielded one crisis after another today. While taking laundry to the laundromat because my washer stopped working yesterday, I noticed that the van seemed wobbly. The right back tire was completely flat (bad valve stem) when we got there. I called Don, who had to have Andy's girlfriend jump start his truck so that he could come to help me. We were quite a sight in the parking lot, trying to jump start the truck again so that he could air the tire enough for me to drive it home. After hiking to a nearby store to get a wrench, he tightened the battery cable and was finally able to start the truck. SO -- we came home, put away 8 loads of laundry, whipped up supper, and got everyone ready for bed since tomorrow is a school day.

Tomorrow and Tuesday are scheduled to be mild days -- until I realize how close the surgery is and PANIC! LOL!

I guess I'll catch up on some much needed rest later this week, unless they decide to boot me out quickly like Vanderbilt did after my spinal surgery. Actually, I am hoping to be home no later than Friday.

:-) Sharon

Pre-Ops (Warning: Moody Blog!)

I spent the day at UT Hospital for pre-ops today. I'm officially ready to undergo another surgery next week.

There's been a lot going on here at home, and I'm really feeling stressed and overwhelmed tonight. It's hard to find an outlet for it sometimes, and people want to be judgmental about my moods/feelings because they have NO CLUE what I'm experiencing, or what it's like to fight the battle day in and day out AND deal with all of the frustrations of living in this world.

I don’t think there’s anything in the world that I miss quite so much as a long, leisurely bubble bath. I miss the quiet oasis of the warm water, the soft music playing to block out any sounds from outside the room, the flicker of the scented candles dancing in long shadows on the wall. When I want to escape now, I put on headphones right here in the lift chair in the family room – right in the middle of Leming Central. I turn up the 80s music and close my eyes, willing the world to disappear. It tends to increase my angst instead of relaxing me, because in spite of the music that reminds me of the happiest days of my life I can still hear the din of loud voices and the constantly ringing telephone (that no one seems to hear or be able to answer except me) and the roar of the television.

I wish that I fly could somewhere far away -- my spirit only, not this tired old body that I drag around all of time. I wish I could soar over the ocean, or plant myself on the loftiest crest of a mountaintop, or even hide in a deep, dark cavern. Tonight, I just want to be anywhere but here, and to be anyone but me.

Everything is a humiliation. Tears when no vein will cooperate for blood draws. Public restrooms. The giant tumor on my neck and all of the scars. The struggle to stand still -- when it's so hard to stand at all -- for the xrays. Confusion when I try to figure things in my head. The loss of my beloved independence.

Oh, well. In the immortal words of race car driver Mark Martin: "No one wants to hear a grown man cry." This is just the way things are right now. I'll sit here licking my wounds for a while, and then I'll pick myself up and move forward like I always do. You'll see.

Prayers and happy thoughts are always appreciated.

:-) Sharon

Happy Birthday to Me!

Well, it's official: I'm 40 years old today. I had an absolutely wonderful day!

Early this morning, I had my very first aquatic therapy session. It felt like a great triumph to lumber down the steps again, cane in one hand and rail in the other, gaining moral support from Don who beamed at me from his perch on a plastic lawn chair like I was in the summer Olympics. The water was warm and delicious. Most of the exercises were the same ones that I did when I could get into our pool. I also used the underwater treadmill.

For the rest of the day, I would notice a sore muscle and think to myself, "Why am I hurting there?" Then I remembered the pool therapy. LOL! Clearly, this is a starting point and I have a long way to go. The therapist asked me what my goal is, and I told him, "I will never stop trying to walk without support. It may be something that I cannot accomplish, but I will never stop dreaming about and working toward it."

After lunch, I jazzied outside and enjoyed the beautiful afternoon weather. I danced in my Jazzy down the driveway to music in my head, and then I rode back up with the chair on full speed ahead. The wind blew through my hair (hair!) and I punched my arms in victory a la "Chariots of Fire". There was no one to witness my display of sheer joy other than the leaves that the autumn breeze shook from the trees and an occasional squirrel scampering down the road.

A poem that I wrote in another dark valley of my life years ago (shortly after my divorce) came to mind:

It felt like spring to me today;
Just why it did I cannot say.
The sun shone, and, to my surprise,
I felt glad to be alive.

I'll try to find the whole thing and post it on my thoughts page.

I finally dragged my reluctant self back into the house just before the kids got home from school The afternoon and evening passed in a flurry of phone calls, visits, and nighttime routines. Lacey made my birthday cake, a spice cake with vanilla frosting. Andy came to visit, and Joey is on his way home for a visit, too. Yay!

To top it all off tonight, Don and I danced a slow dance in the living room to a song on the television ("The Lady in Red", an oldie -- like me). It was the first time I had been steady enough on my feet to do that in a LONG time.

This time last year, I was on chemo and feeling fairly miserable. Yet, here I am, a year later, feeling great and still celebrating, still making progress, and -- most of all -- still victoriously living in spite of -- and in tandem with -- my life with cancer.

Thanks to everyone for all of the cards, gifts, calls, and messages! I love all of you very much.

:-) Sharon

Pics from the Party

Take a look at this very flattering pic of me at my party the other night. Ugh ... now you know why I hate that brace so much! You can also see how large the tumor on my neck has become.

I'm in the process of uploading the rest of the pictures to my web site. I will update this post when they are ready for viewing. Oh, and don't worry: there aren't many pics of me! LOL!

Guess what? I made arrangements today to begin aquatic therapy next week! I will have my evaluation on Monday, and then hopefully have my first pool session on Wednesday, my birthday. It seems very fitting to me to celebrate my big day with a triumphant return to the water.

:-) Sharon

Spinal Followup Went Well Today

The news was good today at my six-week followup appointment with the spinal surgeon. The fusion is intact and my incision has healed nicely. I don't have to wear the brace any more unless I need it for pain control. They also gave me clearance for my next surgery in three weeks.

They even think that I'm ready for outpatient therapy -- including aqua therapy, if I can find a center without a long waiting list. :-)

It has been a very tiring day! Don and I fielded a kid crisis first thing this morning and then hit the road as soon as it was resolved. We took a long drive into the country after arriving two hours early. Then we parked in the garage below the neurosurgery office and walked several blocks to the clinic to have my spinal x-rays done.

I was already exhausted when we paused for lunch at a place just across from the surgeon's office. I barely touched my food; I was more thirsty than hungry.

After the appointment, we crashed in our hotel room and ordered delivery service for dinner.

We'll be heading home tomorrow morning!

:-) Sharon

A Very Nice Surprise!

Don wanted to take me out tonight, so we coordinated dinner for the kids and headed to our favorite restaurant. As we entered the section, I saw several of my best friends' husbands sitting at a table against the back wall. Before I could figure out why they were there, I heard a crowd of people shouting, "Surprise! Happy Birthday!"

I looked to my right side, and there was a long table with many people from our church, and a table in front of them where Mom, Jenny, Jenny's friend, Amy, and Amy's kids were sitting. There were 39 people in all -- and they were all there to celebrate my 40th birthday (10/10) with me!

I cried, of course, and then cried again when my 4-year-old nephew, Alex, gave me a pink heart he'd made for me with Aqua Dots. There was a whole table of wonderful gifts: books, flowers, LOTS of good-smelling stuff (I wonder if there's a hint in there somewhere), gift cards, and even some spending money.

Wow! I'm still shocked and overwhelmed that so many of my dear friends and family would come out to celebrate with me. Apparently, my mother-in-law coordinated it before they left for Florida and everyone kept it a secret.

Since I didn't know it was going to happen, I didn't have a camera with me. Amy, Debby, and Janet all took pictures, and I will upload some as soon as I can.

It was a night that I will remember forever!

:-) Sharon

P.S. -- We're off to Nashville tomorrow for my first surgical follow-up with the spinal surgeon. If the hotel's high speed internet is working (for a change!), I'll post an update tomorrow evening.

A Quick Update

Surgery on my neck and tongue will be done at UT Hospital on 10/24 at 8:30 a.m. It should last approx. 4 hours, and I will have to spend a couple of days in the hospital. Pre-ops are scheduled on 10/17.

I'll post more details after I've had a little more time to absorb everything ...

:-) Sharon

The Latest Medical News

Hello again!
-

Now that I'm in the sixth week since surgery, I am feeling much better. My stamina is limited, but I am not in much pain at all, and I've been sleeping well at night. You know what that means . . . it's time for another one!

I

I called my PCP on Monday to refer me to an oral surgeon for the scary tongue tumor. They swung into quick action and scheduled me an appointment for Thursday at UT hospital. After a consultation, we learned that the head of the department can operate on my neck (submandibular gland) and my mouth at the same time. We also learned that there are SIX tumors inside my mouth, rather than the three I had discovered.

I went Friday morning for a PET/CT scan. I brought home a CD, and I've spent way too much time this weekend trying desperately to decipher the images. When I return to the doctor's office tomorrow (10/1) at 3 p.m., I will get the results and we will schedule the surgery.

Of course, anything we plan will be pending the release/approval of the spinal surgeon when we go to Nashville on Wednesday (10/3).

:-) Sharon

Happy Autumn!

Hello again!

Tomorrow will be the one-month mark since surgery. Wow! Ugh! Whew ...

There's not really much to report this week. I am a little stronger, a little saner than I was a week ago. I can be up and around for a couple of hours before I start to feel uncomfortable (read: in pain!). I made it to town a few times. On Wednesday, Don and I met Mom and Bob at the campground where they were staying. Jenny, Amy, Alex, and Baby Ellie came, too. We enjoyed talking and playing while Don and Bob made ice cream with Mom's ice cream ball that we got her for Mother's Day. The weather was perfect, and a gentle breeze was blowing the first leaves from the trees. For the first time since surgery, it felt really, really good to be in the world.

Have I told you about the tumor on my tongue? Even though I found it a couple of months ago, today was the first time I viewed it in the mirror. It looks like a small mushroom sitting on the top of my tongue on the right side. I can tell that it's growing, so I'm going to have to deal with it before it gets out of hand (or I guess I should say "out of mouth").

Well, summer is officially gone now. For me, it came to an abrupt and premature end on the night that the pool hurt me so badly. I love autumn, the season of my birth, except for the fact that it is the gateway to winter. Winter has always been hard for me, with its short, grey days, but I am dreading this one more than usual. Thinking about it makes me feel cold and tired. I guess I'll set my sights on spring -- green, glorious spring. I always cry when I see the first flowers (usually daffodils) every year.

Spring -- oh, the hope of a brighter, happier season of my life! Please, Lord, let it be ...

:-) Sharon

Good News at the Eye Doctor!

Yeah! We got good news today! The tumor in my eye socket is NOT impinging on my eye or the nerves behind it, and there have been no pressure changes in either eye since my last visit there three years ago!

We were gone from the house for about 4 hours today -- my longest outing so far. It wore me out, but I can tell that I am getting stronger. I'm 25 days out from surgery now, and it's clear that time is doing its healing work in my body. I'm VERY thankful for that!

Thanks for your prayers,

:-) Sharon

One Week Later!

Hello again!

Just a quick update should suffice for now, since I'm not feeling very philosophical these days. Week 4 has started, and I am infinitely happy to be rowing my boat away from the surgical shores. The pain has decreased significantly, to the point where I take a Tylenol if anything at all. I'm doing therapy, but my heart's not really in it because I worry about the fragile spinal healing process.

I DID find out why I have been feeling so flattened by everything. My red blood cell count is low. It is 9, and normal for a woman is 14 - 18. This (combined with my lack of appetite) is probably the reason that I have laid around like a sack of potatoes with NO energy whatsoever - and probably also the reason that I have been so emotional that my home health crew thinks I am depressed.

For the record, I am NOT depressed, even though I had a meltdown on Wednesday when Don took me and Mom to lunch in town. I started crying and I could not stop. I sat there at the restaurant table wearing my alien-suit brace and crying uncontrollably. Poor Mom! I think it really worried her. (Don is used to my antics.)

Of course, the fact of the matter is that with my low blood count I should not have been in town that day at all, nor should I have ventured to Walmart yesterday in the rain. Now that I know, I can be more careful, right?

I'm past the halfway point to my followup visit on October 3rd. To be honest, I'm still taking things one day at a time, hoping that each day will be a little kinder and gentler than the one before it.

Thanks for checking in on me!

:-) Sharon

What a Week!

Wow, this has been a humdilly of a week for me! I managed to snag a terrible stomach virus on top of my healing issues, and I vomited profusely for 4 days.

Yesterday was our 16th wedding anniversary, and I spent the day vomiting and feeling sorry for myself. I wasted a good bit of time mourning for the days of yore, when I was healthy and all of our children were at home with us. All of those beautiful, ordinary days just melted into years, and I never appreciated their sweet simplicity until they were gone.

Those were happy, happy days. Don and I have always been very close, and I love being a mother. Of course, Don and I are still very close, and I am still a mother -- so what in the world is wrong with me, huh?

Anyway, I am happy to report that I am feeling MUCH better today - finally keeping a little food down and counting my blessings instead of crying. I even got dressed and went to the grocery store today. It was my first real foray into the world since the surgery, and it made me very tired, but very happy.

:-) Sharon

God's Touch in Time's Hand, Healing ...

I've started several times to update my