Heard from behind another curtain as I wait for my antibody infusion on a gray, rainy day in Boston:
“Am I almost done?”
I include my reenactment of her question in the video below. It dripped with annoyance, exasperation, and disdain for the general situation.
I can’t blame her. It’s Sunday and we’re here, getting various meds pumped through our veins.
Don’t get me wrong, there are clear upsides to doing this on a Sunday. They have so few patients on this day that they funnel four floors’ worth (meaning four different cancer clinics encompassing a whole suite of cancer types) of patients through the 9th floor infusion center. Floor 9 is my normal home base, so it feels fairly typical to me. Except that Nurse M doesn’t work today. Sad face.
But today’s nurse tells me that few patients come in on Sundays, so everything moves fairly quickly. This is good, since I came here today via the Boston airport by way of an early flight out of Pittsburgh, where I was attending a conference. I’ll take a train home when I’m done…assuming I get to my train in time.
It is a good day to sit in a heated chair with a warm blanket, at least.
Subhead: Outlook promising, Antibodies to continue
I had another CT scan last Friday and we met with Dr. M this past Monday to get the results. M once again showed us two screen shots he’d printed out: one from my last scan in August and one from last Friday. I’m not posting the photo here because he drew on the print out and it’s hard to make out the differences. (And because I’m traveling today and forgot to take a pic of the pics.) Suffice it to say, the liver tumors shrunk even more over the past two months. My blood work is great and M was “very pleased” with the scan. This is pretty strong language from the good doctor, so we’re very pleased, too. When he left the office after our consult (in a somewhat disheveled rush, with papers akimbo, as is his way), he urged me to “keep up the good work.”
Of course, this begs the question, what comes next?
In the short term, as I’ve explained before, I’ll continue to receive Herceptin and Perjeta infusions every 3 weeks. Perhaps for the rest of my life. They also will collect blood samples during those visits, and I’ll be back to getting CT scans every 3 months.
Three is the magic number.
A quick accounting of my CT scanning experiences leads me to estimate that I’ve had around 20-25 scans since 2011. Damn. That’s a lot of radiation.
Anyway, back to my update. Dr. M explained that we’ll proceed as noted above until there’s evidence of tumor growth or any other indications that the cancer is rearing its ugly, receptor-riddled head. I asked if they would return to Taxol in that situation, since I had such a good response to it. He didn’t directly answer me, but explained how pleasantly surprised the medical community has been by the THP regimen, because it’s been effective beyond their expectations. It could be months or many years before I have any need for chemo again. And by then, who knows what the treatment options might be.
This is encouraging. But it also drove home the reality that I’m one of thousands who are still guinea pigs for this treatment.
Remember, the combination of these three drugs is still very new. It’s only been two years since the landmark Cleopatra study came out. We often hear, and sometimes have to think carefully for our own purposes, about clinical trials. But once a study has gone through phases I-IV and achieved FDA approval, we tend to think that the experiment is complete. That’s not at all the case. Although the THP treatment for HER2+ breast cancer has received all its formal approvals, every individual who uses this combo is another “n” in a longer study of the treatment’s effectiveness.*
So far, THP’s outcomes look great. Let’s hope my contribution to this experiment is on the extra long side of the “recurrence-free survival” spectrum.
Meanwhile, I have a hair update. The hair on my head is starting to fill in, though it’s still very short. My acupuncturist made a comment this week about me having thick hair.
“How do you know that??!” I asked, too quickly and with great interest.
“I can tell from how your hair is filling in,” she replied.
Hallelujah!! As you’ve likely gathered (ad nauseum), my greatest vanity in this process has been related to my hair. I’m cool with the Ripley-esque look, and have enjoyed hearing friends tell me it makes me look like a bad-ass and Husband saying it makes me look smart. (Which I don’t get, but I know he means it with love. Or maybe he’s seen too many X-Men movies.) And I’ve loved showing off my big dangly earrings. But I’ve definitely been nervous that my once thick and abundant hair would grow back thin and, well, post-menopausal. (Sigh) In short, I’m relieved to get an unbiased opinion that my hair seems to be filling in with its characteristic thickness. For that good fortune, I’m even willing to accept the uncharacteristicproportion of grays.
Another aspect of my hair has been unsettling lately, and that is the loss of facial hair. For the first four months this was great. No more post-menopausal upper lip hair to bleach, no “witch hairs” to pull, no random discoceries in the middle of an important meeting that I have a half-inch hair growing on my neck.
But over the past 3-4 weeks, I’ve been steadily losing eyebrow hairs and eyelashes. I now could count the number of individual hairs I have left around my eyes. I’ve lost all the eyelashes on the inner half of my right upper eyelid. My eyebrows consist of a few steadfast holdouts on either side, but precious few. Every time I wash my face or rub my eyes, another lash or three comes off, usually falling in my eyes and forcing me to rub my eyes furiously, causing a couple more hairs to jump ship. All I can say from this experience is that we have far more eyelashes than I would have guessed, since they fall out like maple leaves in a fall windstorm, yet I still have some left.
This facial hair loss makes me look weird. There’s no getting around it. I’ve never had big eyebrows or thick, luxurious eyelashes, but the absence of my meager allotment makes me feel naked in a way that’s hard to understand until you experience it. I’ve seen plenty of people who, for various reasons, have little or no facial hair. No problem! That’s just what they look like. It’s different to watch your own face transform in this way.
Mascara helps for the eyelashes, but I had to laugh at myself today when I realized I only had half a lid’s worth of lashes to mascarify. I’ve also taken to using eyebrow pencils. This also makes me laugh at myself, because it’s something I once thought I would never do. And it’s hard to find the right eyebrow pencil. I have two different pencils, neither of which is really quite the right shade of brown, and another powdery thing applied with a spongey brush that is a little too dark. It’s really hard to find the right approach…which leads me feeling a little self-conscious at all times. If I scratch my eyebrow, will the eyebrow come off on my finger? Or smear across my forehead? It ain’t easy.
We’ve all seen the ladies whose penciled-in eyebrows are entirely the wrong shade for their complexion, or all cockeyed, or otherwise unnerving in their precision. Hopefully none of those descriptions apply to my eyebrow drawing, but it still looks fake and, therefore, odd to see on my face. But I’m learning some grace and humility, I hope, because drawn on eyebrows are way better than five-random-hair eyebrows. Plus, I need to be able to raise my left eyebrow during conversations. It’s part of my communication tool set.
*In scientific research, the number of individual samples you have in your study is referred to as “n,” for “number.” This applies across all fields, not just medicine. As a study’s n becomes higher, its results become more likely to be representative of real life, or what’s actually happening. Large studies of breast cancer tend to have huge n’s, in the 10s of thousands to the millions. By contrast, the largest study I could find when I was first researching uterine leiomyosarcoma had a sample size of a couple hundred people.
I had my first experience with acupuncture this week.
In a classic RI scenario, I went to see an acupuncturist who was recommended by a friend, and then discovered by accident that another, unrelated acquaintance goes to the same place and sees the same person. This second person, W, raved about said acupuncturist, and insisted that I request “the room W uses.” “It’s a bigger room with better music,” he noted.
I’ve never done this before, so I was apprehensive. You might laugh at that, considering the four major surgeries, two rounds of radiation, and 18 weeks of chemo I’ve had. I even admit to having a pretty high pain tolerance. But the thought of asking someone to stick a bunch of needles in me…it just never sounded like much fun.
The acupuncturist, P, was very calming and exuded competence. She has decades of experience with this, and told me this would be a piece of cake compare to what I’ve been through.
So after an initial consult, I laid on the cot and closed my eyes. She started on my shins, and told me that when she hit the right spot, I would feel a “woosh” of energy down into my feet. And I did. It was a fairly intense feeling, though not painful.
She continued to place the needles on my feet, between my toes, my arms (around my elbows, I think) and my hands, between my fingers. She also placed one on my forehead (“to calm the spirit”) and several in each of my ears.
At that point, she offered me a blanket and an eye pillow and then instructed me to take a short nap.
As I’ve previously explained, I’m a horrible napper. Lying in a strange room with a bunch of needles stuck in my body did not assist in this endeavor. I was afraid to move at all for fear that it would cause some excruciating pain, so I didn’t even lift up the eye pillow to take a look at the voodoo doll version of myself.
As I first lay there, trying to clear my mind of the million and one random things running through it (“need to call so-and-so about that proposal, have to draft that paper by Thursday, have to call my insurance to see if this visit is covered, do we need dog food? what are we going to have for dinner tonight?”), I was fascinated to see a sea of black with pin points of electric blue behind my closed eyes. Later I saw explosions of purple, contracting then expanding to fill my field of view. I have no idea if this was related to the acupuncture or just some visual expression of the thoughts racing through my mind. Or just floaters. It was pretty, though, and helped me to focus a little more on the experience rather than my endless to-do list.
I will definitely listen to one of my meditation apps next time around, because the 30 minutes or so I laid there was definitely not restful. I found myself feeling very bored, and frustrated that I couldn’t get up and DO something.
I have to admit, though, that I felt an immediate benefit from the acupuncture afterward. The pins and needles sensation was temporarily gone from my fingers and toes. It’s come back a little, but not to the level I was experiencing before. I’m clearly someone for whom this treatment works, and I’m excited to continue it.
In my last post, I shared Husband’s thoughts about our gratitude for the support we’ve received from near and far. Rather than repeating that, I’ll just note that he perfectly described my feelings, too.
I do have a lot to say, though, and I’ve been remiss in posting lately, so this will be a long post.
First, so as not to bury the lede: we confirmed this past week that September 7 was my last chemotherapy treatment. YAY! That is 18 fucking Taxol infusions, people.
This is great news, obviously, though there are some emotional catches. I’ll get to that in another post.
I wanted to share some thoughts about side effects from the past few weeks, because this was an important basis for the end of this round of chemo.
In the week leading up to Sept. 7, my neuropathy changed again, shifting from overall numbness throughout my hands and feet to feelings of pins and needles in my toes and fingertips — the same places where the numbness originally started. This is the sensation that many chemotherapy patients experience, and often much earlier in their treatment. I feel fortunate that this came late. I should also note that this isn’t really painful, per se, just annoying. It becomes increasingly annoying in the evenings, when I put my feet up at the end of the day. This is very normal, I gather. Many people experience worse neuropathy at night. The gabapentin prescribed for me a few weeks ago has helped a lot, making it much easier to sleep. I’ve come to realize that it also helps if I take the gabapentin an hour or so before I go to bed, to give it time to kick in before I lay down.
I’d also been experiencing occasional pains in my left leg over the past few weeks. At my 17th chemo treatment, my nurse (Nurse L, this time, as Nurse M was still on vacation) described these pains as arthralgia (joint pain) and myalgia (muscle pain). They’re most likely related to the chemo, but different from neuropathy. She suggested I take ibuprofen to manage this pain, and that has worked well. These leg pains are erratic, and I wasn’t able to detect a pattern.
Thankfully, the pains have subsided over the past week. This is perhaps related to the fact that they decreased my dose of Taxol on August 31 and maintained that lower dose on September 7.
They decreased the dose in hopes of halting or slowing the progression of neuropathy. The decision to end my treatment at 18 weeks was really about the body’s limitations in handling all that chemotherapy, and also to decrease the chance of any permanent nerve damage. At our meeting with Dr. M this past week, he asked many questions about the specifics of my neuropathy: “Does it hurt when you push on your fingers like this? Does the bed sheet bother your feet at night?” and so on. My answers made it clear that, while I still have tumors in my liver, my body has reached its limit.
As I’ve noted before, I’ve had changes in my sense of taste for quite a while. The weird part is that this ebbs and flows. At its worst, everything I eat tastes like cardboard.
I have often written in this blog that certain side effects are not as bad as they could be. In this particular case, I’m going to tell you straight up that a world in which everything tastes like cardboard is far worse than it sounds. “Eating cardboard,” in my mind, equates to a feeling that all foods and liquids, regardless of texture and flavor, are reduced to a static, exceedingly bland “flavor” that becomes more intense and bothersome the more you eat/drink. But then, after a few days, this goes away, and I can enjoy flavors a little more. I think I may have detected a pattern with this one: it seems to be worst in the few days after chemo treatment, and then slowly dissipates.
I’m hoping that the end of chemo will mean the end of eating cardboard. Stay tuned.
I finally seem to have gotten a handle on the diarrhea…mostly, I think, because I’ve switched to a very bland diet. I’m barely eating any vegetables, except for cucumbers and squash. Tomatoes trigger diarrhea, as do greens and most other vegetables. So I eat mostly white foods: potatoes, hot wheat cereal (known as “farina” out East, but I grew up knowing it as Malt O Meal), oatmeal, yogurt, bananas, English muffins. And meat. I’m eating a lot of meat, because my body is craving it. This has made a big difference. That said, I still have occasional bouts of diarrhea, and they usually come out of nowhere. I’ve had to cancel several plans in recent weeks because of unexpectedly frequent trips to the bathroom.
I’ve not been using the Lomotil that was prescribed to help with this. It’s another intense drug, the kind that can cause drowsiness or dizziness, and carries a warning that you shouldn’t drive while under its influence. (!!) That’s some hard-core diarrhea medicine. Anyway, after an especially, ahem, active evening, I recently took the Lomotil along with my regular gabapentin and Ativan before going to bed, to be sure that I’d not have to get up from bed every 5 minutes. Wows! That was the best night’s sleep I’ve had in ages!
As of today, one week and three days after my last chemo infusion, I’m feeling pretty good. Last week’s infusion was the beginning of the antibody-only treatments, which will continue every 3 weeks for the foreseeable future. It remains to be seen if the diarrhea will subside, as it’s possible that I could get diarrhea from the Perjeta. Obviously I”m hoping that this will not be the case.
The neuropathy should start to subside, though I don’t know how quickly. I will say that I think it’s a little better already, which may be partly related to the acupuncture I had this past Friday. Hard to say after one visit.
My hair is growing now. Or, at least, the gray hairs are growing. I’m ready to let it start growing in now, but I shaved my head again yesterday to give my poor little dark hairs a fighting chance to catch up with the gray/white ones, which seem disproportionately active. (WTF?)
With all of that said, I do have one side effect that is definitely kicking my butt right now. Fatigue.
People keep telling me that I look great, I have great color, my skin looks super (and on that count, I have to agree, though I don’t recommend chemo as a skin care regimen), and that’s all very nice. More than anything, people comment on how I seem to have great energy.
Well, friends, that is because I’m a good faker. When I’m out and about, at work or at the grocery store or whatever, it’s a whole lot easier to pretend that I feel good than to show how tired I really am. Because saying that I’m tired invites looks of sympathy or unsolicited advice for herbal remedies or something else that requires too much energy to respond to. So I put on a smile and say I feel great. And I mostly mean that. I have marveled throughout this whole experience at the fact that I feel, overall, much much better than I ever expected I would. So, relative to my expectations, I do feel great.
But I am TIRED. Every day. All the time. This isn’t surprising, of course. I did invite poison into my bloodstream every week for 18 weeks. I’ve got a body’s full of cells that are working overtime to make me whole.
So, if you see me, there’s no need for you to tell me that I look great or energetic. I appreciate the sentiment, but this is honestly not something I want to hear right now. I just want to get back to some semblance of normalcy. No more chemo is a pretty damn good start.
This is a guest post by Husband, reposted from his Facebook page.
“Although we’ll still be coming to Boston every three weeks for antibody infusions, today is the last chemo treatment for Sunshine, and I’m doing some reflecting, and thinking how this whole cancer business is just filled with contradictions. This summer was long and hard, but flew by, unbelievably fast. The chemo worked wonders on the tumors, but not quite as much as we hoped. The side effects were terrible, but not as bad as they could have been. What is absolutely clear, however, is my gratitude for all the love and support that so many of you have given us these past few months. Every meal delivered, every time Kit was walked, every visit, every gift, every ride to Dana Farber, every “tell Sunshine I’m thinking of her”, helped more than I can say. Both Sunshine and myself. So, just in case I was too quiet or not quite clear, as I often am, thank you. As we enter this next phase, the Great Wait and See, and the contradiction that no news is probably the best news, please know how much you’ve helped, and how much that is cherished.”
Slopped a wet tea bag across my chest when my uselesss fingers mistakenly picked up the string from the edge of my mug and my brain couldn’t react fast enough to prevent the mess,
Dropped a bagel on the couch, slathering my pants, the couch, and my date book in chive cream cheese,
Nearly broke my blender while trying to wash it,
Pawed at a magazine five times before successfully turning the page,
Struggled to get my fingers around the pull cord on a small table lamp,
…something else that I can’t remember.
You get the point. It really does feel like I’m wearing oversized rubber dish gloves all the time. This is infuriating!
On the plus side, gabapentin is awesome. Apart from this stupid cold I picked up yesterday, which had me up coughing and honking my nose most of last night, at least my pharmacopeia is finally getting dialed in to help me sleep.