Ask a Survivor

So, I just got back from a survivor support group, which means I have many new questions/discussion points, from various people.

Caregivers seem to take news about cancer so much harder than survivors…

This is a recent observation, and, based on my somewhat limited experience, 100% true. All of my family members went to pieces in various ways after my diagnosis (I’m sure I’ll get a detailed explanation about how I’m absolutely wrong in that assessment). Being able to panic and have a break-down is a form of able-bodied privilege. Survivors are aware that if we panic and freeze, that’s the end of the story.

How do I know treatment is working?

With traditional treatments, tumors shrink and symptoms lessen. Newer treatments I’ve seen are designed to prevent metastasis or recurrence, and, obviously, that’s a much harder thing to track, because you’re not really aware of things that don’t happen (and, cruelly, it’s not uncommon — in the world of brain cancer, anyway — for treatments to actually worsen symptoms). I’d look up the statistics for your individual cancer, and see where and when the most likely time frames and sites of metastasis are. If you outlast that point without any bumps in the road or complications, keep at it.

Even though the Warlocks weren’t exactly warm and fuzzy, they exhibited the endless depths of patience you would traditionally associate with immortal black magic users, and they were quick to point out that, if I had noticeable side effects, the treatment was likely causing collateral damage, and, therefore, probably hitting some glioma cells, too. If you’re in pain, the odds are that the disease is getting it worse.

How do I know if [X] is normal?

I see this (in various forms) an awful lot on GBM support sites. Cancers are unique to each person. Again, use PubMed, ask your nurses (nurses and technicians are great for informal, informed opinions), if you are having an emergency, hang up and dial 911.

How long does neuropathy last?

As long as it lasts. Neuropathy is usually just ‘numbness’ caused in the peripheral nerve system by chemo and radiation frying some nerves. I got a double-dose because I had neurosurgery, followed by chemoradiation that specifically targeted my somatosensory lobe (the part of the brain responsible for body sensations). However, this same time two years ago, I was only moving around with a walker, and now, I’m up to limping about unaided, so progress is possible. I’d recommend looking into physical therapy (yes, there are physical therapists who specialize in cancer survivors), personal trainers, and the yoga studio to find someone who can help.

Tell me more about “chemo brain…”

Oddly and a little ironically, I never experienced this as other survivors have (Jenna describes it as, “I can ‘see’ my thoughts and what I want to say, but it’s like a little bird gets to them before I can.”); but, I most certainly was severely sleep-deprived and in pain for the better part of a year. Those are not circumstances likely to result in peak cognitive function. If you had four beers while recovering from a stomach flu, you wouldn’t spend the following morning agonizing about why you had a hard time recalling the previous evening. Given that there are a vast array of unintended neuropsychiatric side-effects from fairly commonly-prescribed meds, there’s a distinct possibility that treatment is playing with your mind. However, before tackling that mystery, I’d recommend investigating if you’re sleeping enough, staying physically active, getting proper nutritional support, etc. There is a long, fairly mundane list of potential issues (especially when you start doing research on what can cause brain damage, which is almost every activity or behavior we subconsciously encourage in Western Society) to get through before you arrive at “mystery substance is frying my neurons” (says the guy who was regularly pumped full of an experimental substance in hopes that it would fry those neurons)(well, the astrocytic support cells gone rogue, to be more specific, but you get the idea).

What’s your “secret” to survival?

Honestly? A horrifying amount of luck. A little more-realistically? Keeping healthy throughout treatment, and keeping people invested in my well-being. That “keeping healthy” thing is no joke; I can count on one hand the number of survivors I’ve heard of who made it through chemoradiation successfully (a list which includes, let’s not forget, me). Every other survivor has horror stories of crashing blood cell counts, allergic reactions, demonic possession, etc. And the self-administered stuff we don’t ‘fess up to with our oncologists does not help. Marizomib caused massive, eye-watering pain on my infused limb from Day 1, and it only got worse. I was probably taking dangerous amounts of aspirin and tylenol before switching to CBD and medical marijuana. I can actually pin-point the exact conversation:
PA: So, what do you do to manage infusion pain?
SELF: I take a lot of Tylenol. Like, a lot.
PA: Just as long as you’re not above 3000 mg a day.
SELF: Uh, right. Ha ha.
After that, I just swapped out for CBD and (the day after infusions) RSO. Last I checked, all of my internal organs were still operating as-advertised. Remember, just because it doesn’t need a prescription doesn’t mean it’s not dangerous in the right doses.

Keeping people invested in you is a human-interaction thing, and it does require people to like you (I’d encourage empathy, active listening, and genuine curiosity and warmth to help here). Having said that, you do not want to be the patient that nurses clock out early to avoid. You want to be the person in the cancer ward who, when the residents get permission to go home, will say, “It’s after-hours, but it would only take a few minutes to review that odd test result on Mrs. Callahan’s chart.” People just taking a few minutes here and there — when they didn’t have to — has literally saved me on more than one occasion. This is especially important if your tumors are smaller than expected and only appear as inconsistencies on scans.

I’m sorry if I’m coming off as negative or a downer about this.

This was actually a comment this morning, and I had to reassure the gentleman who voiced it that he’s seeing everyone in that room with the benefit of years of therapy and behavioral adaptations. Every single one of us — I promise you — started this thing utterly terrified, and, usually, in great pain and tired. Even though the US has an utterly medieval view of maternity leave, we kind of understand that it’s not really fair to ask women to be cheerful and pleasant after re-enacting the infamous dinner scene of Alien with their intimate parts (I mean, you could make that request, but you’d be an asshole to do it). I, personally, have not given birth, but, in terms of physical unpleasantness, I’d imagine it’s comparable to chemoradiation (someone who’s done both should definitely get back to me). If you wouldn’t tell a woman who’s just spent twenty hours in labor to smile (and you should not), please don’t remind us that we’re not overflowing with light and beauty during the most wretchedly desperate time of our life. We’ll get there, eventually, but please give us the benefit of the doubt and a little time.