Sometimes in life you get to look back on a choice and recognize that it was a good one. For example, the fact that I decided to buy an Aflac cancer policy in 2009, at the age of 35, two years before I was diagnosed with uterine leiomyosarcoma. Or that I agreed to serve as an interim executive director in 2006 when my friend S. asked me to, launching a career path that I never would have imagined for myself. These are choices that, in hindsight, were both wise and fortunate.
But when you choose to commit yourself to a partner you must make a series of choices about that person. Every year, every month, and every day, you choose to be with them. (At least, that’s how one hopes it would work.)
When I look at the choices I’ve made about Husband, I can see they were good ones, and that I’m wildly fortunate to have had this man by my side, through thick and thin.
It is decidedly difficult to carry on a healthy relationship through cancer. Your interactions change (or don’t), your priorities change (or don’t), your needs change (or don’t)…you get the picture. As much as any relationship takes work, I think the addition of a disease or illness that makes a couple face mortality adds a different layer of challenge. This might be like getting to the 20th level of a video game, only important.
The challenges involved in sustaining healthy relationships during and after cancer is another reason for the growing interest in survivorship research. Being a “survivor” (a term for which I have no affection) entails a lot more than monitoring tumor markers and getting regular scans and sorting out the new normal of your body. Partners and other close family members bear psychological scars and triggers, just as the patients do. Figuring out how to navigate these emotional minefields is a long and ongoing process.
Husband and I have been together for fifteen years, and we’ve been going through this survivorship process for 5+ years now. It’s not been easy, but we’re still doing it. Together. Every day. I don’t know the words to describe the depth of my gratitude for his continuous investment in our relationship. Thank you, R. I love you.
And you, gentle reader. I’m also grateful for you, my friends and my family. Husband posted a beautiful Facebook post today on this topic, thanking the many people who have helped us in countless ways. Like Husband, you keep coming back to provide love, care, and assistance whenever we need it, over and over again. Thank you. I love you, too.
My motto this year has been “life is strange.” (Indeed, life has been stranger this year than ever, at least in my lifetime, not least because of cancer.) When I tell people my cancer stories and they look at me with that stricken, grievous face we generally offer to people we feel sorry for, I respond by saying, “life is strange.” This is an empirically true statement, of course, but as much as I’m down with empiricism, I’ve taken to using it because it offers me some peace. It occurs to me that this might be my own, non-religious version of the serenity prayer.
There are some things in life we can’t see coming. Some of them are good, or perhaps we make good choices to avert the things that are bad. Some of the things that come at us are bad, or perhaps we make bad choices to avert the things that are good. Sometimes we get lucky. Sometimes we don’t. Any way you cut it, life is strange.
In spite of this strangeness, I have so much to be thankful for. So today I revel in my gratitude. I hope you get a chance to do the same.
Clearly, I’m better at sharing bad news more promptly than good news. I apologize to all of you for this, because you deserve to know the good news, too.
So, here it is: It’s been 73 days since I finished chemo treatments. I’ve continued to receive the two antibody infusions every 3 weeks.
As of my last visit on October 30, my blood work was excellent. Specifically, the CA27-29 tumor marker–the one with a value of more than 4,000 on May 8–was down to a value of 1. ONE!!! This is the level of CA27-29 that a normal, non-cancerous person would have. (Not that I’m a “cancerous person,” I hope…but you know what I mean.)
In short, this is the optimal outcome from treatment. The regimen worked, allowing me to transition to recovery mode.
And recover, I have!
My appetite is back. I’m not eating as much as I was, say, a year ago, but that’s not a bad thing. 😏
My sense of taste has returned. I’m now enjoying food again, experiencing the range of flavors that drive my love of food. No more eating cardboard
My hair is growing. I was curious about what my post-chemo hair would look like. Well, it looks gray. And black, which is weird, because my hair was never black. It kind of looks like someone used a shaker of powdered sugar over my dark hair. I know this is typically referred to as “salt and pepper,” but this looks different. To me, the gray seems to be a fine covering on top of the dark hair. Someone told me I looked “distinguished.” I think I just look old. (Though I do still love the short hair.)
Of course, growing hair and my lack of natural estrogen means that my facial hair is also growing back with a vengeance. It struck me as so odd that I lost most of my facial hair in the month after finishing chemo. But it’s grown back as quickly as I lost it. Now I have to do some serious grooming to keep everything under control: eyebrows, witch hairs, mustache. Sigh. It almost makes me miss my penciled-in eyebrows. Almost.
The neuropathy has improved a lot. My hands are recovering faster than my feet, although I still lack dexterity. Anything that involves picking up something heavy from underneath (like rotating our mattress, which I tried to do with Ray the other day) is very difficult, because I can’t muster the control of my fingertips to get under a corner. I’m still taking the gabapentin before I go to bed, and it helps.
My fingernails are still wacky. They look like a layer cake, with healthy nail near the cuticle, a no-man’s land of questionable commitment to the nail bed in the middle, and a top layer that is totally unattached to the nail bed. This is part of the complication with picking things up–I’m still afraid I might rip off a nail if I’m not careful. But it’s getting better. My toenails are also wacky, but it’s November…sock season!
And, finally, there is my overall well being. The fatigue I had during treatment, and for the first month or so after, is pretty much gone. I’ve been traveling a lot for work since September, and would have every excuse to feel exhausted. But I don’t!
All in all, I’ve been fairly shocked by how quickly I’ve begun to feel better. I’ll leave you with a few pictures, including my Halloween costume from this year. Husband had the great idea for me to dress up as Imperator Furiosa from Mad Max: Fury Road. Why, you ask? Because my hair was *perfect* for the part. Plus, it felt good to be an ass-kicker.
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.
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.
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.
Overheard today while waiting to be called in for my vital signs to be measured: a woman wearing a head scarf (presumably over her beautiful bald head) came out from the area where they gather vitals before we meet with our docs. As she sat down across from me in the waiting room, her husband asked, with a smile, “Still vital?”
She smiled at him and nodded vigorously to acknowledge her sustained vitality.
I couldn’t help but smile and giggle at the exchange. I said to them both, “we have to take everything we can get. Being vital means we’re still here.”
They both laughed appreciatively and agreed. She gave me a long distance high-five.
Cancer camaraderie is the best. Well, not really. It’s fair to argue that non-cancer camaraderie is objectively better, because it doesn’t involve cancer. Still, it’s always satisfying to be able to have a meaningful exchange with relatively few words because the other person/people intuitively understand where you’re coming from.
Today was a THP day and chemo number 16. Whew! Stackin’ ’em up and knocking ’em down!
My friend D brought me to DF today. You may recall that Husband typically takes me on these long THP days, but he had a gig today that was scheduled months ago when we thought I’d be done with treatment by now. Sigh. No worries, D was excellent company and a careful listener during my visit with the PA today (Dr. M is on vacation). And Husband is not so easily deterred. He called in for the meeting.
We discussed the status of my neuropathy, my increasingly random (and frustrating!) bouts of diarrhea, and the factors determining the end of this round of chemo.
I also got the results of my echocardiogram. The LVEF (Left Ventricle Ejection Fraction), which measures the degree of function in the heart’s most powerful chamber, is the critical number from this test. Before I started chemotherapy in May, my LVEF was 72%. Anything between 50%-75% is normal. As of last week, my LVEF had decreased to 60%. My PA didn’t give this a second thought, but it’s clear that the Taxol has taken a toll on my heart, as expected. It’s important to note that I’m not experiencing any symptoms that would indicate heart trouble, so I’m trying not to dwell on this big decline. If any cardiologists want to weigh in here to make me feel even better about it, I would welcome your comments.
Re: neuropathy, it has become more annoying over the past week. Thankfully, it hasn’t progressed much in my hands, where the numbness is confined to my fingertips above the “distal interphalangeal” or “dip” joints, but it’s definitely become worse in my feet. I now feel a numbness or occasional tingling throughout both of my feet, not just my toes. I also have had some weird, uncomfortable feelings along the length of my legs this week. I can only imagine this is what Restless Leg Syndrome feels like, as my legs were, well, restless. The feeling kept me up (that and the excessive number of bathroom trips) most of Monday night. The PA couldn’t say for sure that this is neuropathy related, but it’s a reasonable guess, and likely.
At this point, there are 3 options to manage this neuropathy:
Start taking Gabapentin, a prescription that alleviates nerve pain and, bonus!, aids sleep
Start regular acupuncture treatments
Decrease the dose of Taxol in my remaining treatments.
We’re going to do all 3, probably. I got a script for Gabapentin today and will make some appointments for acupuncture tomorrow. They left my Taxol dose alone for this week, but will likely decrease it next week. As it is, 16 consecutive weeks on Taxol is a long time, so it’s a) not a surprise that I’m having these cumulative side effects and b) kind of gravy for me to still be getting the chemo at all at this point.
Yes, I realize how ridiculous it is that I just described an additional three weeks of chemo as “gravy.”
The most significant part of the conversation with my PA today was a fuller appreciation (on my part) of the reality of being a metastatic breast cancer patient. I’ve been coming to this fuller appreciation in steps. Today, it came from PA’s response to my question about what metrics they use to determine when I will stop getting the Taxol.
My scientific brain was thinking in terms of percentage change, as in, when X% of the liver tumors have gone away, or Y% of them have shrunk by a certain amount, they will stop the chemo. Turns out that there are no real metrics. Instead, this is where the “art of oncology” comes in to play.
Sure, they’d love to see all the tumors disappear. But that hasn’t happened yet and is unlikely to do so in the next 2 weeks. Rather, they look at my liver tumor markers (down AGAIN this week! My CA27-29 marker is now within the normal range!), my metabolic panel, my side effects (especially neuropathy, b/c they don’t want this to get too bad or, worst of all, become permanent), and then make the call.
It’s crazy to think that I would stop getting chemo while there are still cancerous tumors in my body. This is a mind-bender for me, but I guess this is what Dr. M meant when he said my treatment will “intensify and de-intensify.”
I also learned today that I won’t have another CT scan as part of this decision-making process in September. They will wait a few months before I get another scan. At this point, I’m scheduled for two more weeks of Taxol (ending September 7), then my antibody treatment (September 14 and every 3 weeks thereafter). They’ll keep tabs on the bloodwork I mentioned above, and then restart chemo in the future as needed, if the tumors start to grow again or if I develop new ones. That chemo could be Taxol again, because I’ve responded so well to it, or it could be a different type of chemotherapy. This depends entirely on the situation…thus, the “art” of oncology.
Overall, this was a very good day. My tumor markers continue to decrease, in spite of Nurse M’s regular reminders that tumor markers eventually plateau or even occasionally increase. This is exceptionally good news. My liver function (evaluated in the metabolic blood tests) is all normal, and my PA said today there’s no reason to think that my liver function would be impaired over the long term because of this illness. My heart function is good. I’m going to stop chemotherapy in the near future, at least for a while. With luck, the neuropathy symptoms will dissipate (slowly) after I stop receiving chemo.
I’ve been feeling well, overall, with relatively high energy in spite of the diarrhea, neuropathy, and fatigue that I feel at the end of the day. That fatigue is partly due to my poor sleeping related to the foot/leg neuropathy. That said, my oncology nurse left me with some important reminders today.
I had a different nurse this week for infusion, as Nurse M is on vacation. Her name is Nurse S, and she is one of the most stunningly beautiful women I’ve ever met. Seriously, I was distracted by how gorgeous she was. (Bad timing for Husband.) She was also an excellent nurse, very knowledgeable and competent, as is the norm for DF.
Nurse S remarked on the fact that I’m starting a sixth cycle of Taxol, which is a long time to receive this drug because of its cumulative toxicity. She urged me to try acupuncture and to pay even closer attention to my side effects over the next week, as well as how I respond to the new drugs they’ve prescribed. At this point, the neuropathy could advance very quickly, as could the frequency of diarrhea and other side effects. They want to have the best possible information over the next two weeks in order to make the call about how to proceed in late September. Time to start keeping my log book again!
Finally, apropos of nothing, I have to note that Husband and I had some friends over to watch the partial solar eclipse this past Monday. We had 66% obscuration of the sun in Rhode Island, but it seemed like much more than that. We had this impromptu party because I waited too long to order ISO-approved eclipse glasses and had no choice but to order 25 of them. So I did. And we invited 23 people over to watch with us. Here are a few pics of our Field of Celestial Gazing (the backyard). If not for this darn cancer, I would have gone somewhere within the path of totality to experience the real deal, but unexpected diarrhea is not a pleasant traveling companion. That’s ok: Husband and I have already made plans to see the 2024 total solar eclipse in Texas, with some friends who live 20 minutes from the path of totality.
Started today by getting an echocardiogram at the Hospital adjacent to Dana Farber. This is an ultrasound of the heart, intended to assess heart function. Specifically, they’re interested in how well my heart is pumping blood. This is called (ahem) “ejection fraction,” or EF.
The concern is driven by my Herceptin infusions. In another example of how cancer treatment can negatively affect patient’s lives over the long term, research (here, here, and here, among other studies) has shown that Herceptin, aka trastuzumab, can cause loss of heart function. This isn’t an immediate effect, but given the multi-year use of Herceptin, the cumulative effects can be problematic for some people. As is often the case, however, the research on this isn’t crystal clear. There are many caveats about the conditions under which Herceptin might cause cardiac dysfunction, as well as the reversibility of this problem. The upshot is that it’s standard to do regular echocardiograms to keep an eye on any possible problems.
Back to the ejection fraction. Normal EF is 50-75%. Left Ventricle EF (LVEF) less than 50% is technically considered heart failure. When I had this done on May 8, my LVEF was a strong 72%, and today’s test will be used as a comparison to see if my treatment has negatively affected my heart.
Silver Linings Alert: A very nice difference between today’s echocardiogram and the one done on May 8 is that I no longer have all that abdominal pain. The process requires lying on your left side on a bed while the technician pokes and rolls a small ultrasound transducer that looks like an ink roller over your heart. This is probably no big deal for men (see image above), but for women, I can tell you it’s rather uncomfortable. Those pesky breasts. The tech pokes/rolls the ink roller around the chest, applying a good deal of pressure to try to get a good image of the heart beyond all that useless, dare I say traitorous, breast tissue. Anyway, back in May, it was difficult for me to lie on my back or side for any length of time without pain, which made this relatively simple procedure a little more difficult. Today I was able to lay there for nearly an hour without any problem.
It was fascinating to hear all the different sounds made by different parts of my heart. At one point I noticed a distinct shh-WOO-woo, shh-WOO-woo, shh-WOO-woo sound, though I don’t know where she was with the transducer at that point. It was at this point that I turned my head to the right to get a view of the monitor. And what an amazing view it was! (The soundcloud link below is not my echocardiogram, but you get the point. I was bummed to discover that this person’s heart doesn’t say shh-WOO-woo.)
I kept asking the technician questions, and she was happy to try to answer them, but as a non-native English speaker with a very strong accent, it was hard to understand much of what she said.
Still, I gathered that they pay special attention to the left ventricle because this is the real powerhouse of the heart, responsible for most of the pumping. The other heart chambers, she said, are more passive. She poked and rolled and made a big mess of my chest with all the lube they use to allow the pokey ultrasound transducer to “glide” more easily. There was not much gliding involved in this exercise, I can tell you. Then she instructed me to take short breaths – not too much! – to capture the heart filling and pumping. Too big a breath meant that the heart would expand beyond the view of the monitor window, making this a rather precise process. She went on to say that breathing is a very important exercise for good health. I feel like I’ve been inundated with instructions to meditate (and practice breathing) lately. It almost felt like she was a paid protestor to further this pro-breathing agenda.
The 2-D echocardiogram shows an image of the heart (or whatever the target organ or other tissue is) doing its thing, as well as the heartbeat, which is measured by electrodes that are stuck in several places around the chest and abdomen. Periodically she would turn on a feature that would show a color-coded image of blood flow through the various heart chambers, veins, and arteries. The image looks like a heat map, where red colors mean more blood flow and blue colors mean less. At one point she held the transducer in the upper middle of my abdomen to get a look at the hepatic vein, flowing from liver to heart. The hepatic vein is quite large, and was easily visible to my eye on the monitor, but I was distracted by two pulsating cones (a terrible word to describe this, I’m sure, but that’s what they looked like) to the right, above the liver. It turns out that this was the bottom of my heart. Every time I get one of these windows into my body, I’m amazed at how close together everything is! I’ve heard many times that the heart muscle is about the size of a fist. Well, that’s a bigger fist than mine, apparently, since its lower extremities are far closer to my liver than I would have imagined. We’ve got a lot of stuff crammed in these bodies. No wonder things go wrong so often.
The technician also explained that the heart can experience scarring from breast radiation, in spite of best efforts by radiation oncologists and techs to avoid this. That reminded me of the, again, very precise, practice of breathing and holding my breath that was required during my breast radiation in 2015. They did imaging to figure out exactly how much I would need to inhale and how long I’d need to hold my breath to protect my heart during the radiation zaps. The duration of each radiation treatment was mostly a function of whether I was able to do the inhalation and breath-holding well the first time, or whether it took a few times to get it right. It’s interesting to see this all come full circle now. Oh, and by the way, “radiation therapy frequently augments the cardiotoxic effects of systemic cancer therapy.” Yippee!
No results yet, but Nurse M said this was good news. If there had been bad news, we would have heard today while I was getting the infusion.
Finally, I’ll note that this was treatment number 15 today. Wow. Time has flown. Three more chemo treatments to go, or so we hope. Another CT scan in early September, blood work, and the echocardiogram results will tell the story that informs Dr. M’s decision about whether I need to continue chemotherapy beyond September 7.
Side effects remain about the same. The neuropathy has gotten a little worse, but hasn’t spread beyond my fingertips and toes. The quality of the neuropathy has changed, with my fingertips feeling to me as though they’re calloused, even though they’re not. My nail beds no longer feel sore, but that’s because each of my fingertips feels more deeply numb. As in, deeper within my fingers. It’s hard to explain.
The diarrhea continues, and today DF gave me a prescription for Lomotil, a more powerful anti-diarrheal drug than Imodium. I’ve been using Imodium steadily, with mixed results. Nurse M explained the various strategies that patients deploy with the two drugs: some people decide to skip Imodium entirely and just use the Lomotil; others stagger their use of both. He concluded, “there’s no hard and fast rule for how to do this.”
Without missing a beat, Husband said, “the only rule is that it will come hard or fast.” Baahaahahahahaha!! I think this might be the title for the chapter devoted to pooping in my eventual book. ‘Cause you know there’s going to be a chapter about poop.