Imagine that you’re out for an evening walk. You pass a dark corner, and an armed man leaps out and says, “Your money or your life!”
If someone has a gun to your head, you’ll surrender your wallet pretty quickly and hope that you don’t get shot. It’s only later that you realize that you’ve not only lost the cash you had, but that you’ve got to replace all your credit cards, your drivers’ license, the photos of your kids…that takes a while, and it’s more work than you expected. Plus you now have to worry that the mugger knows where you live.
This is what it’s like for cancer patients. Immediately after my diagnosis, I was in desperation mode. Tell me what I have to do to survive, and I’ll do it, consequences be damned. Now that the bad guy is gone (as far as I know), I have to face the aftermath.
There’s no way around it: chemotherapy drugs are, basically, poison. The hazard warning labels all over the pump and infusion bags and needles drove that point home. Here’s some evidence: last June, early in my treatment, I managed to stick myself with the needle from my port as I disconnected my 5-FU pump. Just a tiny bump – it didn’t even hurt. But there was a drop of chemo left there.
See that little black spot on my thumb? That’s the spot that the needle hit – I think I killed part of my finger. It’s tiny, but it’s been there for almost a year, so I doubt it’s going away. No ordinary needle stick, this one.
This is my long-winded way of saying that chemo is serious stuff, so it’s not surprising that it should wreak some havoc along the way. What that means is that, even if we think we’ve left cancer behind, most of us are left with some reminders. I don’t think I knew much about this before I was diagnosed, so in the interest of education, here are some of the basics.
I’ve written quite a bit about the nerve damage caused by Oxaliplatin, one of the chemo drugs in the FOLFOX regimen. I expect that I’ll have some degree of numbness in my hands and feet for the rest of my life, though it’s still possible that it will fade a bit more. Most colorectal cancer patients have FOLFOX as a first-line chemotherapy treatment, so there are a lot of us out there with numb hands and feet. We’re not the only ones; some chemo agents that treat lung, breast, ovarian and prostate cancer, as well as multiple myeloma and Hodgkin’s disease, also cause peripheral neuropathy. There are lots of cancer survivors out there stumbling around and wearing ugly shoes because of this.
Another part of the colorectal cancer journey, as you’d expect. Many CRC patients are left with permanent colostomies/ileostomies. Those of us who don’t have to live with a bag usually face other challenges, including incontinence, excessive flatulence (this is amusing for kids, but the novelty wears off after a while), painful bowel obstructions, radiation colitis, and painful hemorrhoids/skin irritation. Sometimes it’s a real adventure to face a meal and wonder what will happen next.
Damage to the Reproductive System
This is a big one. Radiation treatments are targeted, of course, but those rays can still do some damage along the way. Add chemo to the mix, and many women end up with damaged ovaries, which means they’re thrown into premature menopause. This can be devastating for younger women who have to add infertility to the list of cancer-related losses. It also means that some of us face serious concerns about bone health, and experience menopause symptoms like hot flashes, mood swings and significant sleep deprivation that are more severe than usual. Men who undergo radiation for CRC often experience erectile dysfunction and urinary incontinence, as well as some altered hormone levels and possible infertility. Then there’s the whole spectrum of sexual issues that come along with cancer treatment in general; that’s a huge topic deserving a post of its own, and not something I want to address now, but I know that these worries are significant for almost everyone who’s lived with cancer.
A problem for many breast cancer survivors, this is a possible consequence for anyone who loses a number of lymph nodes during cancer surgery or radiation. Lymphedema is a build up of fluid that can cause painful swelling, restriction of movement, and irritating feelings of itchiness or tightness in the skin. It doesn’t tend to arise for many CRC survivors, but it’s a problem after lots of other cancer treatments.
I’ve written about this. It’s real, and it’s the excuse I use for my consistent inability to find things, remember what day it is, or finish reading an article in the New York Times magazine.
I’ve written a little bit about this, too. It ambushes lots of cancer survivors, and it can be tough to face depression when you think you’re supposed to be thrilled to be alive, rejoicing in your survival. There’s help out there. If you know someone who’s lived with cancer and can reach out to talk about feeling depressed, do it. Sometimes it’s not easy to recognize what’s happening in your own brain.
This one seems logical. Cancer treatment ravages the body. We don’t just walk out of our last chemo infusion and dance down the hall; it can take months, or even years, for some survivors to get past the fatigue. Sometimes it’s a component of depression. Fatigue also comes hand in hand with hormonal changes, anemia, pain and some of the other souvenirs of cancer treatment. Good nutrition and exercise can really help here.
There are more lasting effects to consider, but these are some of the big ones. I’ve faced some of them and been lucky to escape others. And what I’ve learned along the way is that it’s critical to be a strong advocate for yourself whenever you’re thrown into the health care system. Lots of these post-treatment effects can be managed with medication, physical therapy, psychotherapy, and diet. Finding the solutions is a matter of asking the right questions, which isn’t always easy. I want to write more about that.
I’ve managed to escape from the guy with the gun. I’m still replacing the things he stole. But I’m gradually learning that I can live without some of those things, and live pretty well. I’ll take that.