Ask A Survivor

Q: I love this support group, even though there’s never any major breakthroughs or epiphanies or miracles.

A: That’s more of a statement than a question, but I always, always encourage people to find an in-person support group. There’s a dual benefit to this, the first, most-obvious one, is that you don’t have to explain or justify yourself, and no one will run from you. It’s ironic that the same public that insists on treating COVID as if it’s imaginary also insists upon treating non-communicable disease patients as if we’re lepers or werewolves. Or leprous werewolves. So, it’s beyond-comforting to be with people who treat you like you’re still human with no qualifications or reservations, and who can tell you what to expect when you’re expecting to die.

The other benefit of cancer survival support groups is that we offer a viable alternative to the traditional cancer survival archetypes. You’re already aware of those, as presented by the after school specials; we’re all bald, horrifically thin, and, according to pop culture, in some form of denial, bitter, or somehow inhumanly calm in the face of our own mortality. The truth is that we’re mostly just tired, frightened, and somehow bored. Also, we’re usually filling out endless forms, arguing with insurance or a pharmacist, or cajoling an oncologist for a second opinion referral. But you learn that within twenty minutes of entering a cancer center. Actually getting to know each survivor in any context offers occasional glimpses into rare, untapped human potential, and I don’t mean that in a Tuesdays with Morrie way.

I will never forget the first truly therapeutic group I regularly attended; it was a therapeutic writing group. Whilst there, I met Mikil (I’m deliberately misspelling his name, although I doubt describing an East Asian man in Southern California is destroying his anonymity). The overwhelming majority of my survivor friends don’t look like they have cancer. Mikil looked he had several cancers, as well as every disease known to man. I hate to write anyone off or prematurely condemn anyone to the coffin, but this man looked and moved like he had days, or mere hours left. He always wrote the most-interesting observations and poetry, and he always had a backpack with him. That backpack was like something out of a Roald Dahl story; whenever Mikil opened it, he always had some fascinating new art or literary project. One week, it was a book sculpture. One week it was charcoal sketches. He was dying, but, in the face of death, something was burning brighter each time I saw him, even as he grew more frail and wan. Even though his body was giving out and he was more physically constrained every time we met, and eventually had trouble expressing himself, something in him was overtaking both the disease and his own mortality. I sincerely doubt he’s still alive, years later (frankly, my oncologists are surprised I’m around), but his loss feels less like the planet lost another irreplaceable person, and much more like someone burned a missing Van Gogh in front of me — much less an act of sorrow, and more like a spiteful destruction of some priceless masterpiece, a deprivation of beauty. And that made me realize that there can be no art or beauty without pain, which acted as an artistic spark for me. You can, once in a lifetime, meet someone in the throes of death who will leave a luminescent wake in their passing. And you don’t meet them at the grocery store. You meet them in support groups.

Q: I’m really excited that my treatment is ending, but I’m a little worried about who I will be after this.

A: When treatment ends, that’s really just the start of the next phase of survival, and, if you’re lucky, it will last the rest of your (hopefully) long life. But don’t count on this being the end of your disease; I made that mistake on more than one occasion, and almost all the survivors I know made that same mistake; the cancer will be back sooner or later, or it will impair your life in some way as yet unseen. You now have to navigate those new obstacles without the same support you receive with the disease. Again, though, the benefit of support groups is, once you’re in, you’re always welcome, regardless of disease status. Personally, I try to stay as active in cancer communities as I can, but I know plenty of people who do manage to move on, but it’s rarely a permanent relocation. Your unfortunate job is to get to the boring-but-necessary task of building a life that can weather the disease, which means lots of self-care (that’s the boring stuff like staying healthy, seeing oncologists and getting scans regularly, refilling prescriptions, figuring out health insurance loopholes, and ensuring continuity of care). When you hear those blessed words, “No evidence of disease,” the real work starts.

Q: I’m worried about getting my port-a-cath removed, and I’m a tough stick. What can I do?

A: I actually have some solid advice here; the maximum number of attempts on a vein before hitting a winner is nine. Toward the end of treatment, my veins “turned to mush” (that was the expert medical terminology used by the nurses at my infusion center), so I had to go to my left “bad” side a few times. That was hell; there’s nothing like adding a nasty burning sensation on top of the standard neuralgia infusions caused on my bad side, but that was the grim price I paid for not getting some sort of venous access device installed at the start of treatment. For the uninitiated, a venous access device comes in a wide variety of forms and flavors, but all of them are designed to give practitioners easy access to your bloodstream at a moments’ notice. That’s the good news; it can save you hours of pain and literal blood. The bad news is, they’re uncomfortable, require special care and attention, and can act as highways to your thorax for opportunistic infections if you aren’t careful. There are a ton of pros and cons to getting one or sticking with IVs all the way through, as I did. I wish I could say that I made the responsible, intelligent decision after painstaking research and discussions with my physicians, but, the awful truth is; I was five weeks out of neurosurgery by the time I would’ve been eligible to get one installed. I don’t know if you’ve ever had neurosurgery, but it leaves a mark. At that point in treatment, I could’ve been impaled on a concrete rebar, and my first impulse would be, while being wheeled into the OR, “Are we sure this surgery is necessary? Maybe I’ll pull, you push this time!” So, simply psychologically, someone giving me bionic veins was right out. Oh, well, there will always be another cancer, and I can do my research then.
Anyway, as to making it easier to find a vein there are a few factors you can use to tilt the odds in your favor. The first one is proper hydration; make sure you drink a few liters of water the morning of your blood draw/IV installation. Those annoying plastic bottles of water every gas station sells are usually a half liter (500 mL), but double-check. So, 4–8 of those to start with should get you going, and keep sipping in the build-up to the event. Also, you might have veins that are hard to see, but very easy to feel, like I do. If they don’t see any prospects, tell them to try touching the most-likely areas (making a tight fist helps) to see if they can’t find something. Ask if they can use a 22 gauge “baby” needle if need be, make sure they know you’re a case of “measure twice cut once, or you’ll cut a second, third, fourth, fifth etc. time. The woman in question with this concern was discussing the possibility of moving off of a Port-a-Cath in favor of her veins, and wanted to test-drive the equipment, first. Which is a great, intelligent move that I’ll steal the next time this issue arises — you can try your regular veins while your port-o-cath is still in you, and, if you dislike the results, you’re one IV removal away from returning to Square One. Sometimes, data collection that doesn’t immediately benefit you, and allows you to return to the status quo is helpful, because it doesn’t cause permanent harm, but it does add to your knowledge (even if that knowledge is, “I’m not ready for this”). Survivors get to safely experiment with our treatment and medical situation so rarely that a zero loss experiment is almost a vacation. Almost. Anyway, whatever decision you make based on this new information; I hope you make the correct one for you.

Q: I feel anxious at night.

A: I think oncologists do survivors an incredible disservice by not bringing this problem up with survivors at the time of diagnosis. Anxiety issues and panic attacks are common as long as there’s chemo in your system. I, myself, exclusively had nightmares during treatment (no gentle dreams) and for the years it took chemo to clear my system (about two years), but I recommend some sort of sedative, an antidepressant, an antianxiety, a decent shrink, and a high-CBD medical marijuana product to help you out. And get more physically active, it’s not only healthy, it’ll speed up your metabolism so those lingering drops of chemo in your system get absorbed and metabolised faster. However, it is worth noting that night time anxiety and/or panic attacks are fairly common for survivors while still in treatment, as it’s a common side effect of chemo. That’s according to my oncologists, anyway, but there’s also a solid chance that they were just trying to get me to stop hyperventillating after one urine test indicated kidney damage (yes, that actually happened, sort of — one test showed I was in kidney failure, which, thankfully, no one took seriously, due to the nature of me being able to drink water and pee without any notable problems — sometimes, there’s an error in the system). Look into medical marijuana, antianxiety medications, and an antidepressant (that last one can be a surprisingly good bet, given that a number of antidepressants are correlated with better long-term outcomes in a number of cancers).

Stay safe, folks; get the COVID booster, and get plenty of rest during the holidays (this Thanksgiving, I’m going to work on saying “No” more often, so I don’t enter December exhausted and irritable)(we can talk about setting and enforcing new boundaries because of your changing health status next time).