In March, when the battle for my life was reaching a new level, my friend Sally sent me a heartfelt and much needed letter. Sally was my dissertation advisor and is now a dear and trusted friend. In the letter she quoted Simon and Garfunkel:
In the clearing stands a boxer, and a fighter by his trade
And he carries the reminders of every glove that laid him down or cut him ‘til he cried out in his anger and his shame
I am leaving, I am leaving, but the fighter still remains
Yes he still remains
Over the difficult weeks this spring, I often returned to those words in my mind and found in them the strength to keep going.
On Monday I weighed 76.5 pounds despite eating as much as I could tolerate over the last several weeks. I am likely 10 pounds from developing life-threatening heart problems; if I choose to do nothing, I will likely die within a few months. For the past several mornings I have woken up achy all over. This morning, when I awoke at 5 am, I snuggled close to Bill, “Honey, I keep waking up sore all over. Is that the malnutrition?” “Yes,” he answered, “your body is breaking down muscle just like after you exercise except that it can’t rebuild it in your case.” “I’m so scared,” I cried, fearing that we had waited too long to intervene. Bill assured me that we had not waited too long, that there was still time to save my life. “I’m so hungry,” I whispered. And he dragged his poor tired self out of bed and brought me some Jello.
Returning to enternal feeds, i.e., those that use my gastrointestinal system, is unlikely to work. So I am left with one option: total parental nutrition (TPN). With TPN, the gastrointestinal system is bypassed altogether. Instead, doctors insert a central venous catheter, like a semi-permanent intravenous line into one of the large veins near your heart. Then all your daily caloric needs are infused via this line. At first the infusion takes 24 hours, but over a period of time, the solution is made more concentrated and the goal is to have it take 10-14 hours a day, allowing a relatively “normal” life.
We found a physician in Charleston who specializes in this type of feeding. He is incredibly responsive, understanding, and oriented towards maximizing my quality of life. These are three essential qualities in any physician. We travel to Charleston Sunday night and will see him Monday afternoon. Thankfully, he is willing to oversee the TPN as an outpatient process rather than admitting me to the hospital for 5 days. He will perform his assessment and based on that and my labs, manage my TPN long-distance. Bill and I will return home Monday night. Tuesday afternoon I will have the central venous catheter placed at Duke, and begin feedings soon thereafter. While Bill and I are learning to deal with this new development in our lives, our friends Dori and John are taking the kids with them to the beach. This is truly friendship above and beyond the call of duty!
I spoke to a fellow scleroderma patient last week who did TPN for 10 years and assured me that she enjoyed a very full life while doing so. I have read about people doing it longer. I hope it will give me a higher quality of life than I have now by providing for my nutritional needs, which appear to be too high for me to meet with my own intake.
Nontheless, this is a huge step and not without its risks. I told Bill a story this morning of a little girl that I cared for when I was a young nurse. She was a beautiful four-year with big blue eyes and black hair, like a prototype for a young Snow White. A former premature baby, she had developed a condition called necrotizing enterocolitis and had to have much of her bowel removed. Her remaining gastrointestinal system could not process food so she was dependent on TPN for life. When I cared for her she had been hospitalized for a severe infection that caused her skin to slough off. It was horrendous. This is my image of TPN. “That is not going to happen to you,” Bill assured me. But how do we know that? Sometimes I wish I were ignorant. It would be easier to go forward without being so frightened.
So I find myself getting in the ring again when I didn’t think I would or could. Inside I am trembling but not enough to contain my desire to continue my fight.
When I was in graduate school I boasted to my friend, Chris, that I had never seen a Rocky movie. He stared at me in shock, “How can someone from Philly have never seen a Rocky movie? How is that possible?” I was too young to see the first in the series when it was in theaters and, when I got older, it got to be a point of pride that I had never seen one. “But the first one is a wonderful movie; it’s an incredibly sweet story,” he prodded. These words, coming from the least sentimental person I knew, started me wondering if I had missed something. Soon thereafter Chris rented the movie and we watched it together. And I bawled my eyes out.
I am a sentimental person and I truly love Philadelphia, although I could never live there now for a variety of reasons. Seeing my hometown depicted so lovingly on screen was a joy for me. But what really tugged at my heart was Rocky. I loved everything about his character: his accent; his tenacity; the way he waffled between confidence and self-doubt; the honest, open way he pursued Adrian; his courage; the way he exceeded his own expectations; his wisdom that winning truly isn’t everything, and the fact that in the end, when the crowds are clamoring for his attention, he reaches out for the most important thing of all, Adrian.
The movie has returned to my mind so often in the past several days. “Cut me!” Balboa demanded of Mickey so that he could battle to the end. And I suppose that’s what I will do if that is what it takes to go to the final round. But I have to do so knowing that the victory lies not in beating my opponent, a disease I cannot hope to assail, but in giving it everything I had before stepping out of the ring one last time.
Cause I was thinkin', it really don't matter if I lose this fight. It really don't matter if this guy opens my head, either. 'Cause all I wanna do is go the distance.
This is the only way an Italian-American girl, the only girl in a family of rough-and-tumble boys, from the working class streets of Philly knows how to do things: by going the distance. And whether scleroderma wins the battle for my body or not it will never win the battle for my spirit. I will go down swinging because it is the only way I know how to live: to give it everything I’ve got. I hope the TPN works, but if it does not I will know that I did everything in my power to live. I will have my clear conscience and my own permission to go.
The day after my feeding tube was pulled, my friend Amy (apparently a very old soul because she says many blog-worthy things) told me that she thinks my spirit just got too big for my body to contain and the only way for it to survive is to let my body go. I love the image of my body falling away and my spirit soaring and flowing anywhere and everywhere it needs to be.