Long Awaited Final Posting

This is Sharon's final blog entry. She wrote it while in the hospital a day or two before she passed. We are sorry it has taken us so long to post this. However, Don and the family have been through so much and it was difficult for Don to have this entry written. The family is doing better; they continue to have good days and bad. Don said he and the children (except for Josiah) will spend Thanksgiving together. They will get together with some of Sharon's family later on in the day for dessert and coffee. Continue to keep them in your prayers and thoughts. It means alot to Don especially, and the family.

Here now is Sharon's final blog:



I want to be remembered, not as somebody who died, but as a woman who tried so hard to live. I love you all.

Thank you for taking this journey with me.

Love, Sharon

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!"

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

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:-) 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