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 is an “educational exhibit consisting of actual human bodies, specimens and organs.” The bodies and organs are preserved with plastic, believe it or not. 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. Having had my body dissected, so to speak, and had pieces of my flesh removed, I felt an odd sense of camaraderie with the bodies on display. I’ve been naked and exposed and cut up before. I’ve been a spectacle, of sorts, to the many medical students that have gathered around to see the patient with the rare tumor.
Walking around, 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 is the muscle I had 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. Here is where the surgeon had to chip it off. The experience was educational, but at times emotionally overwhelming.
As a kid I’d watch bloodied scrapes slowly turn to scabby knees and elbows and eventually healthy skin or scars that could be proudly displayed as childhood badges of honor. I never understood how miraculous it was that the body was able to heal itself. 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 I felt that first faint kick from the inside, somewhere in my midsection sometime in my mid-twenties, that I was truly in awe of the magic the human body was capable of creating. But, 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 I was stuffed inside a tiny exam room with her and at least a half dozen medical students. I had already had one surgery, and was being urged to have another by my previous oncologist after a year of Tamoxifen and three months of Gleevec had done nothing to stop my recurrence. Fearing possible amputation, my body spent from the drug regimen I had 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 desmoid tumors are like “scar tissue gone mad” and another surgery is like “adding gasoline to a fire.” The human body’s response to surgery is to create scar tissue to heal the wound. For reasons unbeknownst to anyone, my body couldn’t stop this process after my surgery 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 is considered a spontaneous desmoid, meaning I have no family history and had no injury (that I’m aware of) or surgery in the area prior to diagnosis.
My tears fell freely and abundantly as I was told 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 would 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 muscle having been removed, I have an obvious strength and balance deficit in my left leg. I have 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.
I have had a lifetime of judgements against my body. My stomach was never flat. Freckles all over, a birthmark in an odd spot, a nose I never much cared for, a scarred and misshapen hip, my body has never lived up to my glossy magazine expectations. The strange thing about making a poor decision that you get to see multiple times a day is that eventually you are forced to forgive yourself. Forgiveness comes when you realize you will die if you beat yourself up one more day. It is only in that moment you understand how very much you want to live and how you need to accept yourself in order to do that.
I have regret, no doubt, but I have learned. I am wiser. Never again will I approach a serious medical ailment without getting a second opinion. I have regret, for sure, but I am stronger. There was once a day when I had a drain sewn in my leg and the only few feeble steps I could make were with the aid of a walker. I stand on my own two feet now and that didn’t happen by accident. I am determined, much more so than I ever could have realized otherwise. Despite its odd appearance, my leg is strong and it gets me around and over and through and that is beautiful.
My body is not the only thing that changed as a result of my desmoid diagnosis. I have changed, my entire being is transformed. I have been altered physically, mentally, emotionally, and spiritually and I can’t say I would have it any other way. This is Me 2.0. I didn’t ask for it, but the improvement has been well worth the fight. It is said the only way out is through. I was pushed through the desmoid door. I did not go willingly, but I am out now and I am thankful for the experience.