My Birdies are Flying the Coup ...

Well, we are down to a household of 9 this week, following Josiah's departure on Monday to take a job in Dallas. (Andy moved out earlier this year.) I miss him like crazy, but I am very proud of him for following his dream of leaving home and making it on his own. We are blessed to have friends there who helped him get the job and are helping him find housing, etc. I know that he is safe and happy there, and I am glad.

I know there are those who will say that he is selfish for leaving home in the midst of my current health crisis. I want those people to know that he went with our blessing. The fact is that my health is ALWAYS in or near crisis mode, and he as a young adult has every right to start his own life. I never want to prevent any of my children from becoming the adults that God desires them to be. Like I have told Don for years, "We are not raising children; we are raising adults."

The funny thing is that I have talked to him more since he left than I ever did when he was home! He calls me often, and I am always happy to hear from him.

Fly free, Josiah! I love you, son!

:-) Sharon

P.S. -- My legs are still solid underneath me, with no new troubling symptoms. One week from tonight, the surgery will already be behind me!

All Right So Far ...

We are 10 days away from surgery, and so far my neurological function seems to be fine. The actual spinal pain has increased dramatically, especially with activity, but hopefully that will help me limit myself.

In a new development, I am now having stabbing pain behind my eye, near where I found a tumor at the eye socket a month or two ago. Hopefully it's just a coincidence ...

It's weird to talk about surgery as "next week", since that makes it suddenly seem so real and so soon. I want it to hurry and come, and then I want it to never get here -- but it doesn't matter, because time continues its metered pace without any regard to me and my own problems or desires.

I really wish you could "buy time", because then I could bank some for later when the surgery is behind me and I am pain-free again. Since I can't, I'll just keep praying for a successful outcome next Friday.

Please pray for that with me!

:-) Sharon L.

Rambling Thoughts

I'll never forget that moment after the first surgery, nearly seven years ago, when Daddy met my stretcher in the hospital hallway and squeezed my shaky hand with his strong one as he triumphantly announced, "The doctor says there's no cancer!"

Oh, Daddy, if only that had been the truth, and there had been no call from her a week later, asking me to come in, and did I bring someone with me? She tried to convey the rarity, the seriousness of the diagnosis of leiomyosarcoma, but I couldn't absorb it until much later, after doing my own research.

I remember Mom called me and asked how to spell "leiomyosarcoma". I told her I didn't know, and she replied that my sister Amy had found it on the internet, and it sounded so horrible that they were just hoping maybe mine was a different, but similar-sounding cancer without the grim statistics.

If only I hadn't needed to take Don out to the van after work (where we could speak privately) to tell him that the biopsy had revealed a very rare, very aggressive, very deadly cancer. Our lives were changed forever, in ways we could never have imagined on that dark day.

What would I have done with all of these years if I hadn't been doing this? Who would I be today if I wasn't this broken-down, weather-beaten shell of my former self? And yet, hope springs eternal, and I find myself optimistic about the upcoming surgery and the recovery after that. I look forward to placing this chapter of my life in the book of finished ones, and moving on to beautiful innocence of the unknown, and gloriously still unwritten, pages that are ahead of us.

To be here among the living is the greatest joy of all ...

Two Weeks from Tonight

Two weeks from now, I will be lying in a bed in a hotel room, tossing and turning and watching the minutes creep by on the clock while I console myself with the thought that I will have plenty of time to sleep while the surgery is underway.

The meal that I forced myself to eat at the restaurant will feel like a brick in my stomach, and I will find myself wishing that I hadn't even tried to digest food. At the same time, the admonition of "no food or drink after midnight" will provoke within me a panicky urge for both.

Ultimately, the night will pass and the morning will bring with it the early, hasty departure for the hospital. Once I've checked in there, I will change into a bare-butt special and place my folded clothes into a "patient's belongings" bag. Don will kiss me as a I cry quietly, and then he will head for the waiting room pushing my empty wheelchair and carrying my eyeglasses in his shirt pocket. Once there, he will drink the first of many, many cups of coffee as he settles into an easy chair to pass the long, slow, agonizing hours that I will mercifully will not remember.

After an hour of prep, 8-or-so hours of surgery, and an hour of vomiting (and wiggling my toes, please, dear God, please) in the recovery room, I will ask for my family and Don will reappear, my glasses in hand (long story -- I gave him a very hard time when he rushed to me after one surgery without them; hey, I wasn't in my right mind, and besides, I can't see a thing with my glasses!); he will be accompanied by Mom and Dad. There is no better feeling than the overwhelming comfort of seeing them there, my husband and my parents, after the ordeal is behind me.
And, with that, surgery #15 will become a memory, a story to be relayed over and over to the sympathetic ears of well-wishers. I will begin -- again -- the long climb out of the hole, otherwise known as recovery.

It is a journey that I know so well, and maybe the intimate knowledge of what lies ahead makes it harder to face. I dread the weakness, the grogginess, the nausea, and, of course, the pain. I dread the way it takes me days to feel like I belong in the world again. Most of all, I dread the homesickness for my children and my home that swells over me in suffocating waves of longing.

I just want to get this behind me!

Home, Sweet Home

We arrived home around midnight following a whirlwind overnight trip to Nashville to complete preparations for my surgery on the 24th.

I had appointments and tests scheduled from 9 a.m. until 7 p.m., so it was a VERY long day. I started with pre-ops until lunchtime (a quick chicken sandwich at the hospital cafeteria), followed by measurement for my custom-fit back brace and "patient teaching" on what to expect during and after the spinal surgery. Finally, we raced over to Vanderbilt Orthopedics for my followup appointment with Dr. H about my NIL. By this time, I was exhausted and a little overwhelmed. I cried and wailed my way through the x-rays (the pain of being on my back, even for a short time, is absolutely unbearable), then waited for Dr. H to read the films. The good news is that NIL is solid as a rock! Everything (metal and bone) is where it is supposed to be, there is no sign of cancer anywhere in there, and the bone at the lower end of the femur has bulked up nicely. (It was so thin at the time of my surgery that the rod went right through the knee when she inserted it.)

I have somehow managed to pull a muscle in my neck. It is very painful if I move quickly or turn my neck very far to the right. I have ice on it right now, trying to relieve it.

We stopped at Outback Steakhouse in Cookeville for dinner. I had grilled chicken and wild rice, along with some of their yummy bread. It was delicious! After dinner, I slept most of the way home.

It is great to be back in my faithful old lift chair. I am going to sleep out here tonight, because I just don't feel like wrestling with the bed and pillows to try to keep comfortable.

Surgery is only 16 days away, and right now my leg strength, etc. is still doing well. Please, please pray for us as we face the difficult weeks ahead of us.

:-) Sharon

P.S. -- Thanks for all of the kind messages, cards, and e-mails. It means so much to me that so many people are praying for me.

20 More Days ...

... and so far, so good.

I'm like the man who jumped off of a 40-story building, and as he fell past each story he shouted, "All right so far!"

Ordinary life races on, even in the face of all of the horrible possibilities. School starts in another week, so we spent the morning deep-cleaning. We washed walls and windows, sorted through papers and toys, and just basically cleaned the house from top to bottom. It's a double whammy for me right now, because I always get an overwhelming urge to clean, sort, and organize just before school starts AND just before I have surgery (since I will be down for a while and not able to do it).

Tonight Grandma Linda kept the kids while Don and I visited friends for a picnic. We had a nice, relaxing evening.

My pain wasn't too bad today, but it was very intense on the way home. It's crazy the way that the pain sets in every evening at about the same time and then rages all night, only to subside the next morning.

I was thinking about the pool tonight and missing it so badly. Those carefree evenings seem so far away from me now! You know that feeling you get when your vacation is over and it's Monday morning and you find yourself back at your desk, almost like you never left? Well, I have a feeling that summer vacation is over for me now -- and it seems very much like a lovely dream that was never really "real" at all.

I know it's time to get back to work now, time to swing back into fighting mode and prepare myself for this upcoming surgery and the renewed battle against this cancer.

Still, I find myself back in my chair, longing for one more wave of summer to wash over me and engulf me in its peaceful oblivion. I just want to slip into the pool for one more carefree, pain-free, uncrippled swim.

One more that lasts forever ...

:-) Sharon

22 Days Until Surgery ...

No noticeable decrease in neurological function so far ...

Please keep praying!

:-) Sharon

The Gory Details ...

Here's what the MRI report shows:

The nodule that was in the spinal canal encroaching the cord [has returned and is the same size as the original tumor was before the laminectomy]. However, there has been a massive invasion of the surrounding bone and soft tissue and the spinal canal itself. On our axial image 24, we can barely detect the cord within the spinal canal. There is expansile mass lesion that has destroyed the left pedicle and portion of the proximal rib. It is extended into the paraspinous muscles and destroyed the spinous process and is now extending in the soft tissues across to the right side of the paravertebral soft tissues.

From the original tumor site the malignancy has spread in the paravertebral soft tissues one complete vertebral body length in both directions.

No new lesions [other than this one] are identified. Previously (i.e. pre-laminectomy) the vertebral body was not involved and now I can see abnormal signal in the posterior body of T8.

IMPRESSION: Metastatic lesion (with marked progression) to the T8 region of the dorsal spine. The lesion appears to be compressing the cord.

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

The original tumor (without all of the "bells and whistles" this one has) managed to paralyze me in December 2005. Mercifully, I was able to regain most of the use of my legs (and bowel and bladder control) following radiation and surgery in early 2006. It is nothing short of a miracle that this recurrence has not already paralyzed me again -- this time without recourse.

Here's what the surgeon at Vanderbilt is planning to do on August 24th:

Left T8 extracavitary, Right T-8 Transpedicular corpectomy, Redo T7 - T9 laminectomy, Tumor excision T7 - T9, Anterior thoracic fusion, T6 - T10 posterior thoracic fusion.

If I can make it until surgery without paralysis setting in (he fears a spinal stroke if tumor "progress" continues unchecked), the surgeon believes that I have a good chance of maintaining the use of my legs. If my symptoms get worse, it will require emergency surgery.

I am utterly, absolutely terrified.

-- Sharon

Meeting with Spinal Neurosurgeon

We spent the night in Nashville last night at our usual Days Inn, then arrived right on time for our 8 a.m. appointment with Dr. Cheng.

The great news is that surgery is possible, even though the tumor is much more advanced and invasive than my previous spinal tumor. I will be having surgery on Friday, August 24 (barely three months after the NIL surgery). Pre-ops will be on Tuesday, August 7 along with my followup appointment with Dr. Holt.

I'll give more details later, but here are the highlights:

• The surgery will be very complex, and will last approximately 8 hours.
• I will be in hospital approximately 1 week, if all goes well.
• I will need to wear a back brace for a while until everything heals.
• There is some risk of paralysis from the surgery, but guaranteed paralysis -- and possibly other catastrophic damage -- without it.
• Pre-ops on August 7, and surgery at 8:30 a.m. (central time) on August 24.

Please PRAY that I won't end up paralyzed before the surgery can be done.

:-) Sharon