So, we’ve all seen the Lifetime special, we’ve all seen Grandma wither away from pancreatic cancer, we all know that healthy people never, ever get cancer, it’s not our problem, etc.
Then you’re sitting in an exam room after a really heinous flu that you just can’t shake, and your physician walks in and asks if you’re comfortable. And you’re no longer healthy, and suddenly, cancer is your only problem. Fortunately, you’re not alone, and I’m here to warn you of some of the lesser-known consequences and side effects of cancer treatment that even your physicians may not warn you about, and maybe some solutions. I’m not going to touch upon the big ones like “nausea” or “hair loss,” because there are entire books about that, and your doctor will likely bring it up. Plus, you’ve seen the Lifetime special.
- Opportunistic Infections — To be fair, most oncologists will warn you about this one, and it’s a real thing. Chemo and radiation can cause your platelets to drop, but the bigger risk is if you get a “port” or PICC line or some other venous access system in place, you’re basically giving an all-access pass to opportunistic infections, and you’re going to be spending a lot of time around sick people. I didn’t get any sort of port — I wish I could say this was some sort of well-researched, informed decision, but, realistically, I was four weeks out of neurosurgery, and getting any of those installed required minor surgery. To paraphrase the immortal book, When the Air Hits Your Brain, “The only minor surgery is one that someone else is getting.” When you’ve had a major surgery less than a month ago, your heart could explode, you’d be wheeled into an OR for organ replacement surgery, and your first response would be, “Can I get a second opinion?” I really do think this is the main reason for opportunistic infections; when I asked my radiation oncologist about this (you’re put on prophylactic antibiotics during radiation), she asked me if I had a port, and, when I said, “No,” basically said (I’m obviously paraphrasing), “Just wash your hands a lot, avoid obviously-sick people, and call us if you get a cold that lasts longer than a week.” This being Southern California, no one gets colds. Allergies, on the other hand… (you can drive yourself wild playing that, “Is there some obscure shrub that’s blooming right now, or is my body defenseless against microbial invaders?” game). You can be put on prophylactic antibiotics throughout your treatment course, but those are harsh (I was severely sun-sensitive at the height of radiochemotherapy, which is a nasty side effect of them). You can wear a mask, as a young lymphoma survivor and ER doctor did, which offers that great ice-breaker in bars, “Hey, baby, wanna see what’s under the mask?” I just opted to keep healthy, wash my hands a lot, and be honest with my doctors. I should point out that, because I was in a clinical trial, I was getting weekly blood draws that included white cell counts, which is much more frequent than most survivors get; but your cell counts can drop rapidly without warning during chemo, so be wary.
What I did about it: Didn’t get a port, washed my hands a lot, avoided other sick people, etc.
- Infusions can be extraordinarily painful — Like, more than you would think they could be, even if your only knowledge of modern medicine and cancer is derived from the aforementioned Lifetime specials. Part of this is just basic logic — you pump toxic chemicals into a patient, they’re not gonna react well. Yes, there were some infusions (not all of them, thank Gods), where I could feel it going up my arm. That feels about as good as you’d imagine, but, at the same time, you’d be amazed at what you can force yourself to endure if the potential options are, “Complain, come back tomorrow, and, possibly lose your place in the clinical trial,” or, “Wince, clench everything, and just hold for 20 minutes.” The real pain, however, usually started 6–12 hours post-infusion. I’ve since learned that neuropathy (numbness) and neuralgia (“pain,” but the more accurate description is, “That horrible pins-and-needles sensation” you remember from when you sat on your leg too long in Kindergarten), both near the infusion site, and on my entire left side (that thing about the right side of the brain controlling the left side of the body is true, and my tumor/cancer was in the right part of my brain — where the temporal lobe and the parietal lobe meet, if it helps; right in the somatosensory cortex) are somewhat normal for infusions (and really common for marizomib patients). I only opted to have the infusion in my left side once. I used my walker all the next day, and never had an infusion on that side, again.
What I did about it: I quickly noticed that the further from my body I had my marizomib injections/infusions, the better-off I was (frankly, if you’re on this drug, you probably don’t want a port, because it would feel as if your entire body was aflame, that close to the midline/center). I eventually was on dangerous amounts of tylenol and/or aspirin, until I discovered medical marijuana (I could write an entire book about how great the reefer is, if you’re in a life or death situation, all I’ll say at the moment is, CBD is always your friend, unless you’re on Metformin). I started taking it (orally) at 10 mg an hour before infusions, and 10–20 mg post infusions, orally (the company I preferred was CanTabs). The infusion pain was never easy or totally diminished, but, with CBD and klonopin, it was made tolerable. “Tolerable” is your new “pain-free.” You can work back to “pain-free” post-treatment, but while you’re in chemo, you just gotta accept that life will suck.
- You will be prescribed drugs to treat the side effects that treat the side effects that treat the side effects of other drugs — There’s an apocryphal story every first-year med student hears about how, in 1967, Mrs. Smith went to see her physician with a minor cough, so the doctor prescribed Drug X. She goes back in a week later complaining of muscle cramps, which are a side-effect of Drug X, so he prescribes Drug Y to treat the side effects. She goes back in a week later with blood shooting from her nostrils, which are a side-effect of Drug Y, so the doctor prescribes Drug Z; a week later, Mrs. Smith goes in and sees the doctor’s younger partner, who tears up the prescription pad, and correctly diagnoses her with Ebola Virus. It’s a cautionary Aesop’s Fable for grad students about the importance of diagnosis over treatment; but here’s the thing: you already have a diagnosis, and it’s usually confirmed by multiple scans and tests. But you will experience medicine like this, where you’re prescribed drugs to counteract the effects of other drugs to counteract other drug effects. It’s discombobulating, to say the least, and upsetting in a society where being sick is verboten. At one point, I was on low-dose dexamethasone (a steroid)(to treat pain/inflammation — radiation caused painful inflammation around my new surgical sutures/almost-scars), which dramatically increased my insomnia (also, oral chemo doesn’t help insomnia), so I got a prescription for an anti-anxiety med and increased my sedative dosage so I could sleep.
What I did about it: Just took the damned drugs. If you have cancer, it’s likely there isn’t some hidden disease or a case of mis-diagnosed malaria; it’s just cancer. And the treatments for it are horrible. Do whatever you have to to complete treatment. Once you’re cancer-free, you can start discussing cutting back on other stuff.
- Weight gain — This one seems counter-intuitive, but it’s true. We’ve all seen the standard cancer survivor in the Hallmark Channel specials; they usually look like a victim of the Rwandan famine. However, it’s worth noting that those survivors are usually experiencing “cachexia,” which, despite legal terminology surrounding medical marijuana, is actually a very specific condition, when cancer is so wide-spread and aggressive, it has basically hijacked the body’s metabolic processes, and diverted all nutrients to it. The survivor looks like they’re starving to death, because they actually are starving to death. By the time that happens, it’s usually too late to do much more than hospice care. Thankfully, not all of us make it there. Most survivors who make it through don’t make it to that point, instead, we’re frequently given steroids (the anti-inflammatory kind, not the sexy body-builder kind), which are associated with weight gain (because it increases appetite and suppresses hormones that are associated with burning fat). “Prednisone face” is a thing my leukemia friends complain about.
What I did about it: I was fortunate enough to be weaned off of dex after radiation, which helped. I also started going to the gym more, and eating much, much healthier. I think the critical part of that is, “I got off of steroids,” because, when I was on them, I gained 25 pounds. Within two months of going off dex, I lost that weight.
- You may go deaf, or you may develop super-hearing — if you have head or throat cancer that requires radiation, your oncologists are probably going to warn you that you may lose some hearing, because radiation near the parts of your brain responsible for sound processing can do that. However, anecdotal evidence suggests that the far more common side effect is super-hearing. Of all the superpowers possible, this one is so bad, it’s actually a liability. I was woken up by my neighbors getting into their cars at seven am. I inadvertently heard conversations on the far side of a deserted airport concourse. It sucked.
What I did about it: Bought high-quality ear-plugs and avoided noisy places. It took about six months for this side effect to resolve, but there’s not a whole lot you can do to fix it on your own. For hearing loss, I don’t know what to recommend; I suspect most oncologists have a hearing aid group or something that they trust. Like the prescriptions piled on top of prescriptions, hyperacusis will pass.
- Your veins will shrivel up — I don’t mean that they actually disappear (although vascular damage is an extremely common side effect of radiation), I mean that repeated IV installations eventually meant that finding a vein could take the better part of an hour. This is what ports avoid, so that’s the benefit of them. Thankfully, I never got to Sid Vicious-levels, but there were definitely points in treatment where I had a few track marks.
What I did about it: I just gritted my teeth and bared it. I also didn’t get too attached to one single vein for an IV. If I’d been a little more flexible about my “NO INFUSIONS ON MY LEFT SIDE, EVER” rule, this probably wouldn’t have been a major problem. Staying hydrated (which you should do during chemo, any way) helps.
- Constipation — This is one most oncologists know about, and usually warn you going in. They even request you get some over the counter laxatives before starting treatment. Because I enjoy laxatives less than chemo, I only used them once. I did, however, experience minor constipation on a couple of occasions.
What I did about it: Like nausea (zofran and CBD, guys), this is much easier to prevent than it is to treat. I was eating 6–8 raw (or dried) fruits and vegetables a day, and drinking 2–4 cups of coffee. This kept me so regular that my oncologists actually asked me what I was doing in lieu of laxatives. The trick is, you have to commit to this one; this isn’t a fad diet; you really do have to keep gnawing on the mulch day in and day out so that your bowels are regularly sluicing everything through them and Temodar weeks are just a minor glitch.
- More cancer — Radiation, surprisingly, is not healthy for children and other living things. It’s not healthy for cancer, either, which is why it’s used. The nasty drawback here is, it’s likely to cause dangerous, carcinogenic mutations in neighboring cells. One of the side effects of long-term Temodar usage is leukemia.
What I did about it: Increased my usage of anti-anxiety medications, and kept a three-month MRI schedule. “Cancer later” is an awful thing, to be certain, but the key word in that idiom is “later.” “Problems later” are a dramatically superior bet than, “Death now.”
- Your sense of taste/smell might change, and food is no longer as appealing — I never personally encountered this one, but a lot of my leukemia and breast-cancer friends have mentioned that food tastes horrible, all of a sudden.
What I did about it: I didn’t really get it, but, I was also force-feeding myself three pounds of vegetables a day and getting weekly infusions. When you’re subjected to that much misery, bad-tasting food doesn’t even register on the discomfort scale. Most of my breast-cancer friends seem to take a similar Nietzschean view of nutrition and just force themselves to eat. My leukemia friends wait for those windows when food tastes good, and gorge themselves, then.
- Chemo brain — having over a decade of brain damage, this one scared the hell out of me. “Chemo brain” is NOT the same as “brain damage,” because, when you experience it, you’re aware of your impairment. Having said that, my experience with chemo brain is that it’s like influenza, or a red-eye flight — you’re experiencing it because you’re exhausted, in pain, and hung-over (I called it chem-over).
What I did about it: Slept more. Tried to develop better sleep habits. Didn’t drive or make important decisions on infusion days. I also increased my caffeine intake on an as-needed basis, and started using Onnit’s “Alpha Brain.” I also used CBD to lessen the pain. I was never fully-functional, and am still exhausted after a year of treatment, but I’m recovering.
- Pseudo-progression — I don’t know if this is just for brain cancer survivors, but the side effects of treatment (exhaustion, nausea, seizures (potentially)) mirror the effects of the disease gaining ground. Even in scans, inflammation can make it look like the tumor is regrowing or getting larger.
What I did about it: This didn’t really happen to me, except for the seizures (a common side-effect of neurosurgery and the drugs they put you on for it), so, I kept taking the anti-seizure meds. Still am. And I don’t put too much stock in a single scan (fortunately, none of my oncologists did, either — they did jump me up to a scan every four weeks after a suspicious dot was seen in my brain)(fortunately, that turned out to be radiation scarring).
- Dehydration — this is one that most oncologists don’t warn you about, but I definitely noticed I got slightly dehydrated on chemo. I suspect that this contributes to the other issues I’ve discussed. Fortunately, I was able to avoid the worst of this after a research coordinator told me I’d have an easier time on chemo if I drank a lot.
What I did about it: I drank 6–8 liters of water on infusion and oral chemo days.