On November 16th of last year I got some pretty damned spectacular news, news I had been waiting for what seemed like an eternity to hear. Your tumor is dead. I cried, of course. I laughed. I hugged my oncologist. We talked about what my care with her would entail now that I would no longer be on oral chemo. Anti-inflammatory diet, no hormonal birth control, no more babies, no hormone replacement therapy when menopause strikes, NSAIDs for pain, and so on and so forth. See you in 6 months.
I’d love to tell you I left that appointment with a smile on my face and joy in my heart, but I didn’t. I cried. I cried A LOT. I got to tell all my loved ones, my friends and family, that the long fight was finally over. It was great to see the relief in their eyes and hear how happy they were for me. Me, though, I just wasn’t feeling it. I was stuck somewhere between grief and disbelief.
Months later, here I am, still sort of numb. Don’t get me wrong, I’m happy. Hell, I’m just glad to be off oral chemo, but I’ve already had one recurrence and I think I’m waiting for the other shoe to drop. By virtue of the fact that I wrote one instead of a in front of the word recurrence I’d say that’s the case. With a high rate of recurrence and typically aggressive nature, desmoid tumors are nasty creatures. They don’t just inhabit one’s body, they get into one’s mind.
I’ve had other reasons that have delayed my joy a bit. My body is forever changed from my surgery and I now have two dead tumors in my hip and thigh, causing possible mayhem for any muscles, nerves, and ligaments near it. Even months after I stopped taking oral chemo, I was still suffering from side effects and my endocrinologist is currently having to clean up the mess years of treatment created for my thyroid.
As I wait impatiently for my thyroid hormones to settle down and I slowly get back into exercise, I’m realizing it may be time to just jump into joy rather than sitting down and waiting for it to happen. Writing this blog has been part of that realization. It’s starting to untangle some of those complex emotional knots that only serious illness can tie. Writing about my tumor is the beginning of the purge. The next step is an actual physical purge of the many accessories I’ve acquired while dealing with my now dear departed desmoids.
Nexavar Instruction Book – I have to give credit where credit is due, Nexavar killed my tumors. Surgery didn’t do it. Sulindac didn’t do it. Tamoxifen didn’t do it. Gleevec didn’t do it. Nexavar DID IT. Nonetheless, this book pisses me off. It’s almost as thick as the owner’s manual for my car, but much less helpful. I could have summed up Nexavar in a few sentences and saved so many, many trees in the process. You will shit soooooooooooooooooooooooooooo much. Your feet and hands will fucking hurt. Get used to feeling nauseous.
Multiple bottles of Imodium – There are three bottles in that picture, but I think I had two more in the medicine cabinet and I found another one when I was cleaning out my purse the other day. I spent a fair amount of time in the bathroom, even when I was taking Imodium before every meal. Shitting is part of chemotherapy and you just have to deal with it. If you’re smart you use it to your advantage, like I did in the hardship letter I penned to get out of jury duty. It worked, too. I assure you, no one wants to sit for hours next to the lady that might shit her pants.
Socks, socks, slippers, and more socks – One of the most odd side effects of Nexavar is Hand Foot Skin Reaction. Imagine your feet and hands are on fire. Great! Now go about your life as if nothing is happening. Go ahead, try to open a pickle jar or put on a pair of shoes and walk, well, anywhere. Feels swell, don’t it? I can tell you from experience, it doesn’t feel swell. That is why I spent a lot of my day in fluffy socks and slippers and still walked around like the floor was made of broken glass. Makes you long for the ease and simplicity of chronic diarrhea.
Enough lotion to moisturize the galaxy – Hand Foot Skin Reaction is a multifaceted side effect. It goes beyond swollen and tender paws. The skin on those paws is going to thicken and peel off, sometimes in chunks (Boy, I really should have warned you guys not to eat while reading this). Therefore, you’ve got to moisturize, but not just with any old lotion. Your lotion has to have urea as one of the main ingredients. And, urea is found in pee, so that’s kinda weird. All day, everyday, you’re rubbing in globs of pee lotion on your hands and feet, putting on your fuzzy socks, and praying to the good Lord you won’t have too many doorknobs to turn that day.
The actual chemo – In my pantry, in a plastic bin, is the leftover oral chemo. Turns out, I’m supposed to return any of the unused pills to my oncologist, but I don’t see her until May. Makes sense that the stuff they advise you not to touch (but encourage you to swallow twice a day) should not just be flushed down the toilet or chucked in the garbage. I have to make a confession, though, I have reservations about not having the chemo near me. In a way it feels like a security blanket. I have a long way to go before I will feel like this is behind me.
The other stuff – There was other stuff that went along with treatment. I have a walker and a cane that I had to use after my surgery. Those are safely tucked away waiting for my old age. Then, you’ve got the various other meds that I tried, like sleeping pills that didn’t make me sleep and nausea meds that gave me a headache and made me dizzy and various pain meds that usually didn’t stop the pain. Also, there may or may not be a pipe used for smoking a certain herblike substance that I may or may not have smoked that just might have taken care of the sleep and the nausea and the pain all while making Skittles taste like candies that fell from heaven. Maybe, just speaking in hypotheticals, of course.
There’s an unusual sadness in getting rid of these things. Being sick became a norm for me. I can’t ever go back to who I was before the sky fell four years ago, and I’m not yet sure who I am post-tumor. I’m in purgatory. It is said, the only way out is through, so through I must go. Just give me a second. I’ve got a few things to get rid of. It’s time to lighten my load for the journey.