Hope, on a Hill

Last night I attended the opening ceremonies of our local American Cancer Society's Relay for Life. For years, I have wanted to participate in the survivor lap at the beginning of the Relay.

This year, I did it, and it was a very moving experience. When we first arrived, the word "HOPE" made up of luminaries greeted us on the hill in front of the parking lot. That simple word, fraught with so much emotion, brought tears to my eyes before I ever stepped a foot in the survivor tent.

I rolled around the track with a large group of people, all wearing purple shirts emblazoned with the word "SURVIVOR". Even in the victory of the moment, I could not help but be drawn to the luminaries that lined the inside of the track. So many people have fought cancer, and many have lost the battle. It is a terrible scourge on mankind that needs to be cured.

After the Relay, I made it to the pool for a swim. It felt WONDERFUL, as usual. I swam again tonight, with all of our kids who weren't busy elsewhere -- except Eric, who chose to stay in the parking lot. He doesn't like to spend much time with us these days, although he did swim with me last night while Don went to pick up the others from Bible School.

I was thinking about Eric yesterday while I was perusing a copy of "Taste of Chicken Soup for the Mother's Soul" that my chemo angel Lorie sent me (thanks, Lorie!). Several years ago on the day before Mother's Day, when Eric was 11 years old, I gave the kids some money to visit some of our neighborhood's bi-annual garage sales. (They LOVE garage sales, because they can usually charm their way to great bargains.) Eric had already spent his money when he came running back to the house to ask for 50 cents. I gave it to him reluctantly, wondering what additional "necessity" he had found amongst the "junk" in our neighborhood.

When he came home, he presented me with a gift: "Chicken Soup for the Cancer Survivor's Soul". He had bought it two houses up from us in the cul-de-sac, from a woman whose husband had died of cancer. I cried when he gave it to me. I still have the book, tucked into a dresser drawer, to remember that day when he ran all the way home to get two quarters to buy it for me.

And, of course, I am crying now as I tell the story to you.

My family is the reason that I fight so hard to keep life as normal as possible in spite of the cancer. I want them to learn from me that you can not only survive but also TRIUMPH, even when life throws horrible circumstances in your path. I want them to learn about that shining beacon called HOPE that lights up a darkened hillside.

Most of all, no matter what happens, I want them to know how much I love them.

Mid-June Update

Hello, everyone! (Or should I say, "hi, mom"?) Just kidding ...

I am feeling great right now! I wish I could always feel like this.

I hate to admit this, but I have been a little lazy about my physical therapy. It's easier to zip around here in my wheelchair -- or especially in my Jazzy -- than it is to plod around on the walker. BUT I am forcing myself to follow the "no wheels in the house" rule to increase my activity. After all, my therapy is MY responsibility. If I am ever going to walk again, I am going to have to work harder.

Speaking of therapy, I'm not sure if I told you this or not. My home therapy ended a couple of weeks ago. Apparently, I am now officially TOO MOBILE for in-home therapy for the first time in TWO years! Woohah!

However, my outpatient therapy is still pending paperwork, insurance approval, etc. So I am currently receiving no actual PT -- except the stuff I do myself here at home and ... in the pool!

In the photo above, you can see our neighborhood pool. It's hard to describe how much it means to me to be in that water where I can swim, walk, float, dance, and even jump up and down. I can walk down into the pool (5 steps) with my cane, although I still struggle some with climbing the four steps up to where I pivot to sit on the wheelchair. (When I can't make it all the way up, I sit and scoot.)

Once I am in the pool, I am free, free, free! I feel so utterly, incredibly normal in the pool. I walk back and forth across it, I swim laps (one direction on my back, the other on my stomach), I do my exercises, and I jump and spin and move around just because I can. For purposes of therapy, I try to go at least three nights per week and spend at least one hour of constant motion in the pool. Sometimes, I go an extra night or two if I am feeling well and not too sore.

And WOW, the pool activity does make me sore! Muscles in my shoulders, arms, back, and even my feet are coming back to life. Ironically, my legs don't hurt much -- could it be because I have been exercising them so much more than the rest of my body?

Because I always associate the pool with vacation (since I never had unlimited access to one until we moved here five years ago), I instantly relax when I enter the water. I usually have to force myself out the of pool, because the limp and the gravity return as the water grows more shallow toward the steps. Suddenly I am aware of my weight -- and my own limitations -- again. But for several hours per week, I find a much-needed respite from the struggle that my life has become.

So far, my summer (and Don gets me on the technicality that "summer proper" hasn't even arrived yet) has been amazingly simple and wonderful. We are swimming, reading, making homemade popsicles, and just generally taking life a little more slowly and casually.

It makes me incredibly, unbelievably happy.

Happy almost-summer!

The Last Curve of the Road

I've got death on my mind tonight -- not mine, just death in general.

My oldest son's former roommate lost control of his car on a curve on a windy mountain road in the fog early this morning. His car ran through a guardrail, skidded across a field, and ended up wedged between two trees where it burst into flames, killing him. He was 23 years old, and leaves behind a wife and small child. (In a bitterly ironic twist of fate, his own father was killed in a car accident, also, at the age of 22.)

Roger was a friend and mentor to Andy, very much like an older brother. He let Andy move in with them so that he would not have the long commute from our house to the restaurant where they both worked. It was Andy's first out-of-my-parents'-house experience, and he learned an awful lot about life and living over there (not all of it good). After Andy moved back home a month ago, they talked on the phone sometimes. It's terribly, terribly sad!

Once in a while, I get fixated on the thought of death and dying. I wonder what it feels like to cross from this world into the next. Is there really peace, as some people describe, or is there terrible fear and pain? Is it better to die instantly, without warning, or to have plenty of advance warning as your body disintegrates and the medical prognosis becomes grim?

I have learned a lot about suffering in the past seven years. I've experienced firsthand the way a body can break down and turn on itself. At my lowest point, I laid helplessly in a hospital bed lacking even the basic dignity of bowel/bladder control. Don had to regularly check the legs that I could not feel to see if they were twisted. He cleaned the bed linens when I soiled myself, diligently doctored my bed sores, and then propped me up on pillows to bathe me with warm water and shower gel. He kept my turtle bucket lined with a fresh bag during my fierce spells of vomiting from chemo. When my hair was coming out, he would pick up the hunks from the arm of my chair where I stacked them and discard them without a word. He's watched me crawl back up onto my feet over and over again, only to be knocked down again by another punch of the cancer as if I were one of those blow-up plastic bopper dolls.

Oh sure, there's plenty of time to say good-bye as you watch someone waste away from cancer or another lingering illness. But is it kinder than a quick and sudden death? I'm not sure. I do believe that there are some people who begin to pull away a little once they realize you are going to die. This may just be self-preservation, to cushion to blow of death. Or it may be to avoid the reality that everyone -- not just cancer victims -- are going to die one day.

And who knows? The cancer may not get me in the end. It might be an unfamiliar road on a foggy night that ends my suffering and settles my questions about death once and for all. Either way, I'm glad that only God knows when and how it will be -- because, right now, I want to concentrate on living!

Two Year Anniversary of the Fall

I don't know how much I've ever talked on the blog about the first event in the downward spiral of my health these past two years. Now, my cancer was found in 2000, but the first 4 1/2 years after my diagnosis passed with relative normality. There were invasive tests, doctors appointments, and surgeries, but still I lived a fairly regular life. I worked, I drove, I volunteered and church and in the schools, and kept right on going with the daily grind.

My leg started hurting in December 2003. At first the pain was occasional, and VERY hard to describe. It would start on the side of my leg at the hip, and then rotate to the front of my leg and down toward the knee, where the pain would "stop" and intensify before slowing receding back toward the hip. (I read later that this pain, a sign of cancer in the hip/femur, is called "spiraling pain". That's an excellent description; I wished I'd thought of that.) I told every doctor who would listen, and even visited the ER a few times as the pain worsened over the months. A few pain pills (including Vioxx!) were proffered, but no real relief.

I stopped working in September 2004, for a number of reasons that I will save for another tale (all health-related). By December, I could barely walk. I stopped driving, and only got up to move around when it was absolutely necessary. I tried driving one last time, during Spring Break. I took Autumn and Lacey to Wal-mart (yes, I will risk life and limb to get to Wal-mart) to get some warm-weather clothing. I sat on the floor of the store while they shopped, and I cried all the way home because the pain was so bad. After this, I used a crutch to walk at all.

There was a scene that I can't describe without cringing. I was in the bathtub and my leg "popped" so loud that Don heard it in the next room. I guess my leg actually broke at that time. I didn't go to the ER because -- get this -- it was almost time for the kids to get home from school and I didn't have anyone to keep them. This was a move so utterly dumb that I can't even think about it.

I was sincerely stupid from that point on. When my PCP called to reveal that they had FINALLY got the insurance to approve a referral to an orthopedic specialist IN KENTUCKY, I declined. At the cancer doctor's behest, I had another bone scan that showed "activity" (otherwise known as utter devastation in the making) at the right hip/femur. I had an MRI, and the cancer was found at last.

We were leaving for vacation two days later and, in another unbelievably unwise move, I postponed the beginning of radiation until after our return. One week (June 4, 2005) after we returned from our vacation on Ocracoke Island (a remote place with no hospital, only a small clinic), we were having a cookout in the back yard. Don came into the house, and I followed him -- without the crutch, for some reason. I hit the floor with a thud, my legs twisted under me. Don, afraid to reposition me, called 911.

As the ambulance pulled out of the driveway, I noticed 5-year-old Zach was standing on the hill behind our house. I asked him later if he was scared, and he said, "No, I just wanted to see them carrying your leg." :-)

And so the adventure began. There's much more to the story, of course: the horrible agony, the long wait in the ER for a room to be available, spending the night in traction, the surgery, the doctor's grim report, and learning to live life a whole new way.

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On a side note, I am making great progress on my leg use! I'll save it for another blog, but I am SWIMMING again! It makes me unbelievably happy. I feel so carefree that it almost erases the trauma of the past two years.

Almost.