HER-2: an ongoing series
Drug Tales: Roid Rage & Armidex Angst
Alison:
On the eve of my fourth round of chemotherapy, I feel totally agitated and anxious — manic, even.
At Staples earlier in the day, I tried to make some color copies. When they weren’t reproducing to my liking, I almost lost it on the clerk trying to help me. I settled with telling him the self-service copiers suck. He didn’t disagree. Next, I yelled at my husband for preparing the “wrong kind of snack!!” for my son and his friend. Meanwhile, I wanted to eat every snack food in the house (including the donut holes I bought instead of melting down at Staples).
This wasn’t some jittery anticipatory panic attack. At this point, I’ve got the chemo drill down. It’s the Decadron — the steroids the oncologist has me take the day before, the day of, and day after chemo. It’s protocol, so I don’t question it, despite the unpleasant roid-rage-like side effects.
During the actual chemo treatment, there are more drugs. Drugs that will bring me down from this steroid-induced “high.” Drugs that will make the cancer shrink and disappear. Drugs that will help ward off the potential side-effects of all the chemo. I start with a 9am weight check and blood draw. Assuming everything is status quo, the nurse infuses me with Benadryl, steroids (Decadron), and anti-nausea medication (Emend + Aloxi). These so-called “pre-medications” are given intravenously and separately over the course of about an hour through my nifty “power port” (the foreign object implanted in my right upper arm that hurts like hell for about 24 hours after chemo, but saves my veins from looking and feeling like a heroin junkie). Each of these pre-meds help with the potential side effects of the actual chemo, which I receive over the next 4 hours or so, until I am dismissed around 2:30.
“PTCH” is the shorthand for the four drugs that make up my long lasting chemo cocktail. I get Perjeta (P), Taxotere (T), Carboplatin or Carbo (C), and Herceptin (H). Herceptin and Prejeta are meds tailored to treat the HER-2 positive breast cancer, while the other two are standard chemo drugs. The Taxotere is the one that requires I wear ice-packed oven mitts on my hands and feet for an hour to prevent blackened nails that may fall off. The day following chemo I go back for two hours of IV hydration and a shot of Neulasta (which helps counter the chemo-induced white blood cell drop).
There are many breast cancer specific chemo drugs out there — up to 20 according to the online resource breastcancer.org — and a number of combinations with similar abbreviations (AC, AT, CMF, FAC, CAF, etc.). The treatments are so targeted and so specific to the patient’s biopsies, scans, and diagnosis that even my nurse admits she has a hard time keeping track. It all gives the phrase “because, science” a very literal meaning. And, it’s pretty much the level of understanding I can muster, even after several appointments with my oncologist, surgeon, nurses and lest I forget, my chemo “orientation.”
Sometimes, I kind of feel like Jesse, the high school dropout drug dealer in Breaking Bad when he’s trying to decipher his former chemistry teacher Walter White’s meth formula:
At the outset of this cancer roller coaster, there was a brief moment when I thought I needed to research and educate myself about everything the doctors were advising. I soon ditched that plan. It was overwhelming enough to have stage 4 cancer. Trying to research thoroughly enough so that I could make informed decisions felt like a tall order. And still does. Oncology is a very complicated specialty — with sub-specialties and targeted therapy research and treatments for a range of diagnostic factors. So yeah, lots of f-ing science is being dropped.
And, no matter how smart I am, no matter how much academic research I’ve done in my life (in the humanities… therein lies a cavernous difference), there was no way I could tackle all the information that was coming at me. Nor was there time. The aggressive and fast growing HER2 (which had made its way to my liver) undercut that luxury. And, I kind of had to admit that I was and am at the mercy of science, doctors, and big pharma.
But, at least, I could still research and make educated decisions about all the other meds prescribed for the side effects — most of which have their own side effects — of course. The list includes a range of mostly take “as needed” drugs: Zofran and/or Compazine (nausea, vomiting), Decadron (steroid), Atavan (sleep, anxiety, nausea), Coumadin (blood thinner for the port in my arm to prevent clotting), Norco (pain), Lomotil (diarrhea), Vytone (the cellitus in the corner of my mouth), Acanya (acne), Valtrex (cold sores) and a bunch of OTCs (Imodium, Claritin, Flonase, Abreva, Colasce, Miralax, Flonase, Genteal, Ayr Saline Nasal Gel, and whatever Tylenol or Motrin — even the PM version — I need).
And, then there’s the medical cannabis. I got a fancy prescription from my oncologist. It’s on card stock with 3 signatures and a gold seal. I feel so official. But, also clueless. I was never a pot smoker. Actually, I never really did any drugs — even in college. Seeing someone close to me come down off some heavy drugs when I was about 15 was all I needed to scare me straight.
When faced with a choice of the big pharma products or the pot, however, I’ve decided to turn over a new leaf (bad pun, I know). The oncologist recommended not smoking, and getting a CBD strain that would not make me high, but would still help with side effects. Where’s the fun in that? Shouldn’t I get a fringe benefit from the chemo?
I tried ordering online at first. I got a text (Uber-style) telling me the driver had arrived. I walked out to greet a hipster-type delivery guy carrying a messenger bag. I had ordered CBD tincture drops and some chocolate, and naively asked if there were instructions. As in, how do I know how much to take? The guy just looked at me, and took the cash. He didn’t offer me change, and I’m embarrassed to admit it, but I was too intimidated to ask. What kind of tip do you give a pot delivery guy? The delivery was COD and in a paper bag. Just like a drug deal, I thought. But, not. I’ve seen The Wire. And, let’s be real, I’m more Nancy Botwin in the first few episodes of Weeds.
The whole encounter was totally unsatisfying — as in WTF just happened? The next week a friend offered to take me to his regular dispensary so that I could speak directly to someone more knowledgeable. The first place we went was like a seedy motel from a bad B-movie. Black walls. Dilapidated vinyl sofas. And a security guard that would surely rank below “mall cop” status. A woman with overly treated, damaged hair and long yellowing fingernails came out from the secured backroom to break the news. They couldn’t vet my prescription or even advise me because she couldn’t reach my doctor on a Saturday. No backroom access for me.
The next place we tried was the polar opposite. It had the bright whites, glass cases, and clean lines of an Apple store, mixed with a few Spicoli look-alikes at the front counter (the dispensary is in Venice, after all). A kind and earthy woman walked me through all of my options, gave me some brochures, and told me oncology patients get 25% off everything (as it should be…everywhere). They’ve also sent me email invites to special events exploring the “art of concentrated cannabis,” where the offerings are packaged like high-end MAC-style cosmetics.
Even with the hand-holding and the Valhalla-esque environs, I still don’t feel like I have a grip. What the hell am I doing? What the hell am I taking? And what is it all doing to me? The pot strains, the hybrids of CBD and THC, and methods of ingesting seem almost as confusing as the traditional cancer pharmacology. And yet, as I anticipate the steroid-induced insomnia (combined with the hot flash-induced insomnia of every other night), I know I do have a choice — will it be Atavan, Benadryl, or pot? This is the reality of chemo, and one of the few choices I still get to make.
Judy:
As I write this, I am watching Alison chow down on the tuna fish sandwich her mother brought to her chemo session. Her husband, Tom, is also here. I have pulled up a chair to complete the semi-circle. The woman in the next cubicle is ordering takeout from a neighborhood restaurant, with hilariously precise instructions (i.e. “sweet potato fries, WELL-DONE!”) and for a moment, it all feels quite festive. Except, of course, for the occasional beep-beep-beep from the various IV drip stands around the room, signaling the nurses that it’s time to change an IV bag. Alison’s own IV stand completes our little circle, the tube leading from three separate bags dripping powerful chemicals into her veins. After she finishes eating, Alison dons the huge mitts that protect her nails from the side effects of chemo. She is wearing the best T-shirt yet, and — already in writing mode — we quickly see the photo opportunity.
This is the first time I have been able to make it to one of Alison’s chemo sessions, and I was not quite prepared for the flood of emotion I experienced upon seeing her swaddled up in blankets, hooked up to the IV, with her mom sitting by her side. The flashbacks started coming immediately, taking me back in time to the seemingly endless hours I sat by my own daughter’s side when she received chemo for her breast cancer at the age of 30 (that was ten years ago, and she remains cancer-free). Every few weeks, I would fly to San Francisco, where Kerry lives, and drive her to Stanford Medical Center for chemo. There was always a harpist playing in the lobby, obviously aimed at calming us down, which had the opposite effect because it WAS so obvious. Since then, chemo treatment has become much more sophisticated, with science providing ever more specific chemicals to target specific cancers (see Alison’s post above!).
But the emotional impact is surely the same. Alison’s mom also had breast cancer (like mine, it was caught early, and treated with lumpectomy and radiation) and as we sit by Alison’s side now, I feel the connection on two levels –as a former cancer patient and as a mother watching a daughter go through something much worse. When I first saw Alison in that reclining chair today, with her mother by her side, I had to fight back tears. I wasn’t expecting that, and the power of painful memories caught me by surprise. I don’t think I ever cried in front of Kerry. I walked through those months in a kind of controlled, robotic daze, never wanting her to see how scared I was. Only when they wheeled her into surgery for a mastectomy did I finally give in to those repressed emotions. I sat down in the hallway and sobbed. Dealing with my own diagnosis was a walk in the cancer-park compared to the trauma of watching my child go through surgery, reconstruction, aggressive chemo and the crippling nausea that followed. I remember the bewildering line-up of medications on her kitchen counter, and how I worried that I wasn’t sufficiently “read in” on side effects. Fortunately, Kerry is one of the most organized people on the planet and she had charts, schedules and detailed information about meds in neat files on her computer and printed out on her desk. In this area, Alison reminds me of my daughter. Her post this week is Exhibit A of her research and organizational skills, a talent I have come to rely on as we teach a new course that bridges two worlds — journalistic practice and communication theory. We call it “Navigating News and Media in the Digital Age,” but we never dreamed we’d be navigating the complicated world of cancer treatment at the same time. We had our final class last week, and it felt like a major accomplishment to have been wholly present for our students, despite that parallel journey.
Now, in this place and on this day, I am experiencing a different parallel experience: I am identifying with the mother in the room, as well as the patient. I watch Alison whip out her notebook to write down some information the nurse is giving her and once again, I am reminded of my own daughter’s precise recording of treatment and meds. In the ten years that have passed since then, of course, the medications have become more sophisticated. Which is good news, on the one hand, but also more complicated from the point of view of the patient. Because there are choices. While Alison is dealing with Roid Rage from the steroids (not a choice there, actually), I am fighting waves of fatigue and depression from Arimidex, the medication I must take for the next five years to lessen the odds of a recurrence. At least, I THINK that’s the side effect of Arimidex. It could just as easily be the lingering effects of the radiation. I spend way too much time trying to figure this out, Googling “side effects Arimidex” and “side effects radiation” and going down the rabbit hole of medical sites, breast cancer sites, and crazy alternative medicine sites. No matter. The side effects continue to have their way with me. Like yesterday, when I came home from work at USC and was so tired — hit-by-the-proverbial-freight-train tired — that I collapsed into my easy chair and turned on the TV and fell sound asleep. When my older daughter, Kristen, called later to ask how I was feeling, and I told her I had fallen asleep to “Judge Judy,” she was horrified. Not because I was that tired, necessarily, but because I was watching such rubbish. “At least choose something better to fall asleep to!” she said.
There are a number of anti-estrogen drugs now available, and my oncologist told me I could try a different one if the Arimidex doesn’t “agree” with me. Such an odd verb for such a DISagreeable thing. She did give me Celebrex to combat the worst side effect — joint pain that made it difficult to even get out of a chair or walk around the block. And Celebrex, I have to say, has resurrected my knees, feet, hands and hips. “We’re BAAAAACK,” they cried in triumph on the very first day of my life with Celebrex, “let’s take the STAIRS for a change!” Of course, there are side effects to the Celebrex. Apparently it is very bad for your kidneys. I don’t care. Really. I am saying “I DON’T CARE!” as loudly as I can to convince folks that I do not want to hear how dangerous it is. As we mentioned in our last post, we try to take unsolicited advice with a grain of salt, but on this issue, my salt shaker is empty. I celebrate Celebrex!
I don’t have much to add this week. Alison’s chemo session is about over, and so is this post. I am so glad I was here to meet her family (at least a couple of them) and join the “circle” around this amazing woman. Certainly, when I am listing “side effects” of my cancer, I have to put gratitude for this friendship at the top of the list.
