I homeschool my son, which works very well for me because a lot of my time is spent in my pajamas. Occasionally, though, we actually venture outside and go places. The other day we visited our local science museum to see their latest exhibit, Our Body: The Universe Within. It’s an “educational exhibit consisting of actual human bodies, specimens and organs.” The bodies and organs are preserved with plastic. I found it fascinating. My son, on the other hand, may be scarred for life. I guess it can be kind of awkward for a pre-teen to be in the same room with his mom and so many plasticized penises.
Here I was, amidst a field of bodies, stripped of their flesh. Frozen in time. It was surreal. I had never been more aware of how both fragile and powerful the human body is. I’ve been naked and exposed and cut up before. Having had my body dissected, so to speak, and had pieces of my flesh removed, I felt an odd sense of camaraderie with the ones on display. I’ve been a spectacle, of sorts, to the many medical students that have gathered around to see a patient with the rare tumor.
Walking around the exhibit, reading words I’d only seen previously in MRI reports, I was able to fully understand what had happened to my body during my surgery. Ah, that’s the muscle they removed with my tumor. These are the muscles that compensate for my loss. This is the bone that the tumor began to attach itself to. The experience was educational, but at times emotionally overwhelming. Here’s where the surgeon had to chip it off.
I never understood how miraculous it was that the body was able to heal itself. As a kid I’d watch bloodied scrapes slowly turn to scabby knees and elbows, then eventually healthy skin or scars which could be proudly displayed. Childhood badges of honor. It just sort of happened. Just like the sun was sure to rise every morning, I could guarantee that somehow my broken skin would eventually be whole again. It wasn’t until, sometime in my mid-twenties, I felt that first faint kick from the inside, somewhere in my midsection, that I grew truly in captivated by the magic of the human body.
When I was diagnosed with a desmoid tumor I found myself in awe of the chaos my body was capable of creating.
The first time I met my current oncologist there I was, stuffed inside a tiny exam room with her and at least a half dozen medical students. I’d already had one surgery, and after a year of Tamoxifen and three months of Gleevec had done nothing to stop my recurrence, I’d been urged to have another by my previous oncologist. Fearing possible amputation, and my body spent from the drug regimen I’d just endured, all my emotions were poised and ready to strike at the slightest provocation. But I was ready for my second opinion.
I was literally at the edge of my seat when it was explained to me that the human body’s response to surgery is to create scar tissue to heal the wound. And desmoid tumors are like, “scar tissue gone mad.” So another surgery would be like, “adding gasoline to a fire.” For reasons unbeknownst to anyone, my body couldn’t stop this process and created two desmoid tumors where the one had been removed. How the original desmoid tumor formed in my hip is also anyone’s guess, as mine was considered, spontaneous, meaning I have no family history and had had no injury (that I was aware of) or surgery in the area prior to diagnosis.
My tears fell freely and abundantly as I heard her explain that surgery should only be used as a last resort with desmoid tumors and I was nowhere near that. Amputation was not even a consideration and there were other chemotherapy regimens that were available to me, one that was currently part of a study and that appeared to be very effective. Indeed, it was because, after a year on Nexavar, I was given the news I thought I’d never hear. My tumors were dead.
Four and a half years ago I made a decision to have surgery to remove my desmoid tumor. The consequences of that decision will likely be felt for the rest of my life. To say I have had regret is an understatement of epic proportions. Despite being told that I’d bounce back, the awful truth is: that hasn’t fully happened. I’ve haven’t been able to return to running, an activity I never excelled at but enjoyed immensely. With having muscle removed, I have an obvious strength and balance deficit in my left leg. Issues with my back that I can only imagine are the result of the strain my surrounding muscles have to endure to compensate for what is missing.
The weight of my decision is felt with every step.
With homeschooling I’ve found my son is not the only student. We actually go places new to both of us, each taught our own lessons. This latest exhibit…bodies, specimens, and organs. What is it I preserved with my decision? I found it fascinating. My son, on the other hand, while we sometimes joke about my scarred life, perhaps never gave it a second thought, which is fine by me. For now I’m well, no longer the patient, and able to simply be his mom—in the same room with so many plasticized penises.
Christine is a mother of two who is also a writer/blogger at I’m Sick And So Are You where she relays heartfelt and often funny lessons learned from her desmoid tumor diagnosis. She can be found on Facebook at I’m Sick And So Are You and on Twitter as SickChristine.