I thought I was done with cancer. Did my time, paid my dues back in 2008 with breast cancer. But for some reason my lady parts weren’t done trying to kill me, and they attacked with a vengeance late last year. A double whammy – independently sourced ovarian and uterine cancer, unrelated to each other or my previous breast cancer.
For good measure, the less dangerous Grade 1 ovarian tumor touched some endometrial tissue (did I mention I also discovered that I had undiagnosed endometriosis for the better part of a decade?) on my left fallopian tube, and gave birth to a small (less than one cm), very rare, Frankensteinish “de-differentiated” tumor with stem cell-like capability to adapt, morph, grow, and spread like an invasive weed during a rainy summer. They are so rare and usually caught so late that there is very little data about them worldwide, so the data about my very tiny one will be shared broadly – not exactly the kind of notoriety I was looking for. Carrie, my oldest child, quipped “Worst superpower ever, Mom.” Apparently, she’s absorbing my occasionally macabre sense of humor. Repeated bouts with cancer, either your own or that of someone close to you, will do that to a person.
Thankfully, we caught this malicious little monster of a tumor unusually early. Hopefully removing all of my abdominal lady parts, plus performing an omentectomy (go ahead and look it up, I certainly had to – not the kind of tummy tuck I’d recommend) got it all, along with the Grade 1 uterine and ovarian cancers, too. My six rounds of chemotherapy infusions plus some immunotherapy meds will serve as insurance to try and make sure it’s all truly gone and hopefully will significantly lower my risk of recurrence – especially the malicious little monster. I never laid eyes on it personally (deep anesthesia, complete with intubation, robbed me of that chance and it kept hiding from view during multiple scans), otherwise I’d have given it a name. So “malicious little monster” it is because that’s more alliterative and G-rated than “sneaky little bastard” or “nasty little f#@ker.”
When I had my breast cancer back in 2007-08, it was low-grade, Stage 1, and opting for a full mastectomy was considered curative, with a few years of the medication Tamoxifen thrown in as insurance. Genetic testing that more wimpy tumor showed that my risk of recurrence was only 9%, and so it was believed that chemotherapy and radiation would do more harm than good. As a result, I was able to avoid both of them. Whew! Bullet dodged, I thought – I’m done with cancer now. If I got any more cancer, I thought it would be colon cancer, which runs in both sides of my family, and I’ve had enough suspicious looking polyps by now that I’m on a 3-year colonoscopy schedule rather than the usual 5-10 years. How much you wanna bet I’ll be annual after this? Fun times.
I recovered from my two cesarian sections, my mastectomy, and my recent major abdominal surgery really quickly. It’s a more positive superpower I seem to have. However, my torso is now a topographical map with a vertical river of an incision scar running due south from a couple of inches above my belly button down to my older, horizontal c-section scar. And there remains my old mastectomy scar, which is still visible even with my breast implant. In addition to the scars, because of the nature of the vertical incision and my lack of the extra protective layer of an omentum, I will always be at higher risk than usual for hernia. Heavy lifting is now a hard no for me, so if my friends and acquaintances see me play the helpless, weak lady role in the face of something heavy it’s not a retreat from feminism, it’s just me trying to avoid having my intestines make their way outside of my abdominal wall, so please cut me a break and help me out. But with all of the stress, appetite loss, and dietary restrictions that came with the cancer symptoms and everything removed during the surgery itself, I easily and quickly reached the goal weight at which I’ve been aiming with varying success for about 15 years. It’s not a weight loss regimen I would recommend, but at least I look pretty awesome in clothes. When it comes to cancer, you emphasize the positives where you can.
The chemotherapy regimen for ovarian cancer, even early stage (I was Stage 2A – one of the first things you learn once you’ve been attacked by more than one type of cancer is that the staging parameters for different types of cancers varies significantly), is pretty nasty. Two strong chemo medications are prescribed to be infused in sequence, which takes 4 hours, but they first must be tempered with a 40-minute IV drip full of electrolytes, anti-nausea meds, antihistamines, and steroids. And if your immune system reacts strongly once they begin infusing the actual chemo meds, as mine did, that means they pump even more IV Benadryl and a second steroid into you with syringes and stay ready with an Epi-pen just in case.
Most folks don’t react too badly, and the few that do only react during the first infusion. Not me. Apparently, my body can’t recognize its own cancer cells and kill them, but it is quite proficient at recognizing when it’s being poisoned. I not only reacted with the classic stabbing lower back pains they warned me about both times, but with the second infusion I added even worse additional symptoms: a racing heartbeat and shortness of breath. I had to put up my hand in protest and gasp to please let the extra syringe full of IV Benadryl do its thing when one of the three nurses who had converged on me asked, “should I hit her with the pen?” I put up my hand and spoke up because I figured if I could still breathe well enough to talk (and the back pains were subsiding), then an Epi-pen stab would likely do more harm than good. She held off, and when the shortness of breath and racing heart were not completely calmed by just the Benadryl, the extra IV steroids were opted for. My reactive symptoms to the chemo meds came both times at exactly seven minutes after the first chemo med infusion began. At least I’m consistent about something.
I live 46 miles from the main oncology clinic where my oncologist is based and was hoping that after an infusion or two, perhaps I could receive my chemotherapy at a clinic a bit closer to home. But because I am such a problem child, I must keep going to the main clinic until my reactions subside. Reacting to the second infusion is pretty unusual, and the third time is quite rare, but given my malicious little monster and all, rarity is apparently my thing now, so who knows?
They say that you establish a chemo side effects pattern pretty quickly after the first two infusions and then it holds consistently through the rest of the infusion cycles. For me, because of the extra doses of Benadryl and steroids, my side effects get delayed for about 36 hours. I’m sleepy from the Benadryl all through infusion day (I call it day zero) and that evening, which means I cannot drive myself home. My husband has been the one to accompany me to my two infusions so far, and because I am so sleepy from extra Benadryl dosing, he gets a lot of work done on his iPad Pro while watching me sleep. Unfortunately, he has unexpectedly had to leave the infusion area to take phone calls both times before my reactions occurred, so he has completely missed the excitement of seeing three nurses converge on me with their bright orange tackle box, multiple syringes, and Epi-pen. Because he has a tendency to leave unexpectedly, the nurses have taken to giving me a little bell to ring if I feel reactive symptoms once they start the first chemo infusion bag. I do ring it, but very softly, as if I am somehow bothering them by doing so. I don’t really know why, but I suspect it’s a female/mom thing. We women always feel apologetic bothering others with our own needs, no matter how dire or justified those needs might be. “Sorry to bother you, but my heart is racing and I’m starting to have trouble breathing . . . “ In-grained gender socialization sticks hard, am I right ladies?
The Benadryl wears off early the next morning, but the steroids are still in my system (just ask any athlete who dopes and gets caught), and so I am wired to the point where I can’t relax and sit still the entire next day, have trouble sleeping the second night, and still feel quite energetic the second morning. I take that time to get a lot done while the energy and the absence of pain lasts. Like I said, with cancer you emphasize the positives when you can.
However, by 4:00 PM that second day the steroids dissipate, and I’m curled up under a heavy layer of blankets, shivering with feverless chills, and random but constant shooting pains that plague my lower body. They feel a lot like sciatica, but occur throughout my hips, legs, feet, and lower joints. I did manage to lessen their severity somewhat below my knees by wearing compression socks during my second infusion and for a few days afterward. But it took me several days after my first infusion to realize that this was, yet again, an immune reaction that pain meds simply did not phase. Not even oxycontin dented them much. The oncologist on-call over that first weekend suggested taking antihistamines instead. So, I take Allegra every morning and during the day layer on top of that the ingredient in the old over-the-counter medication that used to be called Actifed, and I take Benadryl at night. That does more to bring the pain down to a dull roar than even Oxy did. They are not certain exactly why, but it works. Heat therapy helps some, but I cannot use electric heating pads or blankets because I am one of those weirdos upon whose wrists analog watches will completely stop – I can drain a watch battery in record time simply by wearing said watch. Since the main active ingredient in my chemo meds is the metal platinum, which conducts electricity, applying an electric heating pad to my aching legs increased rather than soothed the stabbing pains I was experiencing, which was a rather nasty surprise.
Despite the antihistamines, the pain and corresponding fatigue of that first infusion cycle lasted eight days. I finally woke up at 3:30 AM on post-infusion day nine, so soaked in sweat that I had to get up and shower. Speaking of that, did you know that when you are going through chemotherapy all of your body secretions are so toxic that you literally need to protect your own skin and your loved ones from them? You must brush your teeth and/or rinse your mouth more often, and drink lots of water, even during the night, to flush the toxins out of your body and to keep your bladder from getting too irritated by sitting statically too long, filled with poison. If you have pets or little kids that might get into the toilet water, you must be sure to close the lid and flush twice, especially if you have a low flow toilet. Wanna have vaginal or oral sex? A condom must be used. No deep kissing. If you sweat on your partner, they should shower too as soon as possible. It’s sobering to think about how toxic my “medicine” is when I practice these precautions myself, as well as when I see the infusion center nurses glove, gown, mask, and goggle up when they are handling and hanging my chemo meds IV bags, just in case the bags leak or get dropped and spill. No need to gown me up, though – I’m already full of the stuff. Even one’s tears become toxic and can change some people’s vision. Fun stuff. Anyway, after my shower and donning a change of clothes, I felt great – no more chills, aches, or fatigue. But I was also wide awake at 4:00 AM.
Unless you pay something like $5000 out of pocket to wear a “freeze cap” on your head during chemo infusions to garner an 80% chance you won’t lose all of your hair (it still usually thins significantly), your chance of losing your hair with this chemo regimen is 99.9%. Because I was not willing to pay $5000 cash for six of the world’s worst ice cream headaches without the benefit of the ice cream, I am not the rare exception when it comes to hair loss. I had my mom clipper off what was left of my hair a day before my second chemo infusion, which if I stay healthy and can stay on schedule are 21 days apart, with the last one occurring on May 1st. Goodbye to my hair, and hello to a really nice wig, hats, and fake bangs to wear under hats (yes, those are actually a thing). Surprisingly, my eyebrows are still hanging in there, thinning but still there and even feebly trying to grow back – I even had to pluck two little strays this morning. So far, I seem to harbor “The Little Eyebrows That Could.” We’ll see if they keep it up, since I’m sure it’s a worse uphill battle for them than that storied Little Engine faced, since he was just being overloaded, not poisoned. My eyelashes are thinning slowly, with no sign of regrowth, so I’m assuming they will be gone soon. I can’t wait until my leg hair gives up completely, though. Too bad its loss can’t become permanent, since my chemo regimen costs a lot more than laser hair removal treatments do.
The second infusion cycle has been better – my number of bad, painful days decreased from nine to four, which is progress. I’m hoping that will now be my new pattern and that as my immune reaction decreases, the pain on the bad days will continue to lessen in intensity. The addition of immunotherapy meds to my infusion regimen for my third cycle could introduce a wildcard that could disrupt this pattern of improvement, and I know for certain that it will at least temporarily increase my already keen need to avoid getting sick.
I am told that even if my pain decreases, my compromised immunity and fatigue will be cumulative throughout the entire chemotherapy regimen, worsening with each infusion cycle. Which means that I must stay away from crowds and sick people for the next several months. And so, my friends, if I decline an invitation or fail to show up to events you know I would normally attend enthusiastically or even help to lead, I’m not being rude or anti-social. I am simply trying to keep from, at best, getting mildly sick and disrupting my chemo schedule or, at worst, ironically dying from a more common illness after going through all of the trauma, discomfort, logistical battles, and expense I have experienced thus far to avoid dying from cancer. Those logistical battles and expense will be the subject of an upcoming essay, so please stay tuned.