The Chemo Purge


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 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.


21 thoughts on “The Chemo Purge

  1. Well done for beginning the process of clearing out the old. Keep being vocal about how you’re waiting for the next recurrence though because bottling that sort of thing up will make the anxiety even worse, even if there isn’t a relapse of some sort. Writing helps, doesn’t it?

    Liked by 2 people

  2. Have some more herb. I won’t tell. Mind you, I’m Canadian, so… 🙂

    I can identify a teensy bit with the painful soles-of-feet thing, since it was a side effect of a powerful antibiotic I had to take after I had double pneumonia in ’05. Mind you, I only had to endure it for 10 days. You, my dear, are definitely entitled to wail and moan a lot, since you’re walking on razor blades for a lot longer… :-(((

    As for lightening the load for your journey, my feeling is that this blog, like a journal, will help a little. Sharing is always good, I think. Never bad. If people don’t feel like reading your story, they won’t. Their loss. ❤ Take care of yourself. I'll be back!

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  3. Hi SickChristine-it’s me, Chicken. Thanks for visiting today and for your comment. I came to see what I could see here. I’m sorry for your troubles and hopeful you’ll stay tumor free. You seem like a writer to me, so I’m guessing the most cathartic thing you can do is to write it all down. I can tell you one thing-The Nexavar Instruction Book is not on my Kindle. Not even a free sample.

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  4. It’s an odd feeling, isn’t it when your life is turned upside down and put on pause and then they tell you to go on living? You assume it will be exciting, and liberating, but really you can’t imagine your life without these little things that got you through. Congratulations on starting your road back to your life!

    Liked by 2 people

  5. Reblogged this on Cookie Crumbs and commented:
    This post is raw and real and touches on the very sad truth that when you suffer from any illness or condition for an extended period of time that it will become a part of you. When it ends that part of you doesn’t just go away, there’s a new struggle that occurs and that’s how to live life without this defining part of you. Please take a look. If you’ve ever suffered from and defeated an illness or condition you will relate with every bone in your body. If you haven’t you likely know someone who has and it will help you understand why the disease or condition does not just go away for the sufferer after they get a clean bill of health. A must read.

    Liked by 1 person

  6. Congratulations on your dead tumors! That is amazing. I related to this post a lot. I have not had cancer but have suffered from Infertility and Endometriosis for 9 years. I have learned to control my endometriosis symptoms via lifestyle and dietary changes and I’m trying to move past my Infertility so I can embrace and enjoy my life. Eliminating the symptoms and pain isn’t just a physical thing, it’s mental and emotional. It’s hard for anyone who has never had to go through something like what you went through to understand that. Your words convey the struggle, even after a clean bill of health, very well. Thank you for sharing.

    Liked by 1 person

    1. I loathe the saying, “it’s a journey”, but it is. You just have to figure it out along the way. And, you’re right about nobody being able to understand unless they’ve gone through it. They say no man is an island, but sometimes you are and sometimes that’s the hardest part of it all. Thanks so much for reading and sharing.

      Liked by 1 person

  7. Hi. I am almost 13 years out from Non- Hodgkins Lymphoma. I also cried at my last oncologist appt., something like 8 years afte I finished treatment, when I genuinely thought I was past all of it. Life immediately after chemo and even for years after sometimes felt to me like I was holding my breathe, while everyone around me seemed to think it was time for a victory dance and maybe a marathon (I kid, kind of, but I do think there is this weird societal expectation that we spring out of chemo/cancer treatment like newly healthy greyhounds). During treatment we are in shock, we are going through the motions, putting on a brave face, I genuinely believe it only begins to sink in in the months after we have finished treatment. Anyway best of luck with your recovery, I know it is hard to go from being sick to “not sick”, physically and psychologically, esp. when you still have symptoms and scars left over. But you are through the worst of it, all the best. xo

    Liked by 2 people

  8. I wish I had written all the comments above. You are touching so many lives with your writing. And I would imagine you’re a pretty special person for the medical community to work with. Your attitude is delightful. I’ve already started purging my closet this morning, Now I think I’ll work on all those medicine drawers. See how inspirational you are?

    Liked by 1 person

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