My Life with Cancer

Long Awaited Final Posting

2009-11-24T13:36:00.003-05:00

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

2009-06-15T11:41:00.002-04:00

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

2009-06-10T20:32:00.002-04:00

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 ...

2009-05-25T18:34:00.005-04:00

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

2009-05-22T01:27:00.000-04:00

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?

2009-05-16T19:49:00.003-04:00

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

2009-05-07T13:52:00.003-04:00

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

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

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

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

2009-05-03T22:26:00.001-04:00

Admitted 5/2/09. Pneumonia.

More details soon.

Next Plan in Place

2009-05-01T23:05:00.009-04:00

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 ...

2009-04-23T21:44:00.002-04:00

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

2009-04-12T23:07:00.000-04:00

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

2009-03-29T21:39:00.003-04:00

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

2009-03-23T21:57:00.003-04:00

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

2009-03-09T21:37:00.003-04:00

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

2009-02-22T22:37:00.002-05:00

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

2009-02-12T20:20:00.002-05:00

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

2009-02-03T23:24:00.004-05:00

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!

2009-01-31T22:34:00.002-05:00

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 ...

2009-01-29T00:27:00.003-05:00

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.

2009-01-23T16:39:00.003-05:00

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

2009-01-22T13:17:00.002-05:00

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!

2009-01-18T23:48:00.004-05:00

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

2009-01-04T22:57:00.002-05:00

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

2008-12-31T22:56:00.003-05:00

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

2008-12-21T23:01:00.007-05:00

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