Butterfingers!

In the past few days I have:

  • 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.

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Butterfingers!

Still Vital

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:

  1. Start taking Gabapentin, a prescription that alleviates nerve pain and, bonus!, aids sleep
  2. Start regular acupuncture treatments
  3. 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.

Because I’m still vital.

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Nanu nanu.

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Still Vital

Shh-WOO-woo, or, It’s Weird to Look at Your Insides

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.

Image result for heart anatomy
Image: Texas Heart Institute

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.

Shh-WOO-woo, or, It’s Weird to Look at Your Insides

Cancer Is Inconvenient

That potent bit of wisdom came from my friend, C. She coined this when a very close friend of ours was going through cancer treatment a few years back. I love this line because it cuts to the heart of the matter. I told C that I’m adding this to the running list of titles for my (eventual) book about all this shit.

Today was one of those days when cancer’s inconvenience punched me in the face. Yes, I mixed my metaphors. Sue me.

Husband and I headed up to DF today for a full THP (Taxol, Herceptin, Perjeta) treatment day. This was my 13th (!) chemo treatment, and the start of my 5th cycle. Each “cycle” is 3 weeks for me, starting with a THP day and followed by 2 weeks where I just receive Taxol. This was also the first time we’ve seen Dr. M (instead of his PA) in quite a while, about 9 weeks. The PA is great, but she’s not authorized to make any grand pronouncements about my care, so we were eager to see Dr. M again today. Specifically, we were eager to hear him say that today and the next two weeks would constitute the end of my chemotherapy.

You may recall that when I was rushed into chemo treatment in May, Dr. M told us that he expected me to receive 4-5 cycles of Taxol. We learned sometime thereafter that I would continue to receive the antibody treatments (Perjeta and Herceptin) every three weeks thereafter, forever. I’ve since learned that the antibody-only infusions will be pretty streamlined compared to the chemo treatments: I won’t need bloodwork every time and I won’t meet with my doc/PA every time. This means my time at DF for the antibody infusions should be 1.5-3 hours, with the longer end of the spectrum accounting for the occasional delays that happen when the pharmacy gets backed up. That big time reduction will make this much easier to fit into a reasonable schedule. Right now, even on days when I only receive Taxol, my treatments are usually a minimum of 4 hours at DF, counting bloodwork, wait times, etc.

But the important part of that previous paragraph is that we were expecting a maximum of 5 cycles, or 15 weeks, of chemotherapy.

Yesterday I had a repeat CT scan of my chest, abdomen, and pelvis to see how my liver looks, and how the liver tumors responded to treatment. My numbers from bloodwork have been excellent, steadily declining, and I’ve been pain free since I started chemo.

Bloodwork_8.2.17

All signs pointed to a great response. My APT, AST, and ALT values are all normal and have been since early June. My CEA and CA 27-29 (the tumor markers) are still beyond the normal range, but they’ve decreased by 99% and 96%, respectively, between May 8 and August 2. Pretty darn good. But the scan would give us a critical piece of evidence. Pictures don’t lie. (Unless, perhaps, you ask Donald Trump.)

CT Scan Comparison_8.2.17

The above images show a few things. First, let me orient you. The “top” of the image is the front of my body, while the “bottom” of each image is my back. My liver takes up most of the space in the images. You can see my spine as the sort of Casper-the-ghost-shaped white thing on the left image and the nuclear explosion-looking thing on the right. The white outline below my body is the scanning table.

The left image is from April 26, the right is from August 2. The red circles show liver tumors. The blue circle shows my stomach, which is fine, I just wanted to indicate what that white thing is. You can also see my (uncircled) stomach in the April image.

On April 26, you can see at least 4 liver tumors in this particular “slice” from the CT scan: two very large ones and two medium-sized ones in a single circle on the lower left. They’re actually a little smaller than they appear on this image, because Dr. M circled them with a pen today while showing us this print out.

Here’s the GREAT news: All the tumors have shrunk, and of course they’ve done so in multiple dimensions, so Dr. M wasn’t able to find an image that simultaneously showed the two large tumors and the two medium tumors in the same frame from yesterday’s CT scan. The image on the right shows one of the large tumors and the two medium tumors. It’s clear that both the large tumor and the two smaller ones are significantly smaller. To put this in context, one of the largest tumors I had as of the April 26 was 57 x 52 millimeters, or 5.7 x 5.2 centimeters. That’s 2.25 x 2 inches!!! It’s hard to believe that I had something that big, plus “innumerable” other tumors in my liver at once when all this started. No wonder I was in such pain. Now, that tumor is down to 16 x 18 millimeters, or 1.6 x 1.8 cm. That’s still more than half an inch in both dimensions, but it’s a massive reduction in size.

Here’s the lousy news: the continued presence of these tumors means that I need more chemo (I don’t yet know how many are still present because we didn’t get the final radiology report and my chemobrain forgot to ask this question of Dr. M). More than two more weeks worth of chemo, for sure. Dr. M said it “might be just 2 more cycles” or 5 more weeks of chemo to get rid of these damn things. I couldn’t help but notice the multiple caveats in his statement.

I’ll continue at the current dose of Taxol, unless my neuropathy gets worse, in which case they might decrease the concentration in the 6th cycle. (The neuropathy has continued to spread and get a little worse, though it’s not that bad. I am having more trouble typing, I’m noticing, and occasionally I get weird electric zaps in my left hand, but I’m still managing just fine.)

After completing these two cycles I’ll get another CT scan to check on the state of the tumors. It’s conceivable that they would want to give me more chemo after that if the tumors aren’t gone. At a minimum, though, I’ll get a 1-2 week break from chemo after September 7 to give my body time to recover a little.

In the meantime, Dr. M order another echocardiogram to be sure that my heart is withstanding all of the chemo alright. Taxol, especially, is hard on the ticker, so it’s important to check. For the sake of my readers, I’ll note that I’ve not had any symptoms that would indicate heart trouble.

Also, Dr. M put me back on the steroid pill I was told to stop taking about 6 weeks ago by his PA. He exasperatedly told us that there are two schools of thought within the DF Breast Clinic about continued use of steroids during chemo. One group thinks it’s always best to eliminate steroids ASAP once it’s clear that the patient doesn’t need them to quell any reactions. Another group – and this is clearly the one Dr. M belongs to – prefers to keep using the steroid once/week to ward off fluid retention, or edema. This is a problem that is not uncommon among patients getting Taxol, and it can lead to serious inconveniences that drugs don’t help. Dr. M said he’s had patients who needed 3 months to fit in their shoes again when edema got out of control. Ok, then. Back to the dexamethasone. No problem!

He also observed that I had a little bit of a rash on my face. Again, this is very common, and I’m lucky that this only started for me within the last few days. He prescribed a cream and told me to stop using moisturizer until the rash subsides. Figures. All the docs and nurses have been commenting for weeks on how “great” my skin looks.

Here’s a recent paper summarizing many of the side effects of Taxol, if you’re interested.

Finally, we talked about my chemobrain problems. This is definitely the side effect that is making me most crazy. There are apparently two hypotheses now about which patients will suffer chemobrain most acutely: one hypothesis argues that very “high functioning” people experience chemobrain more intensely and the other argues that people with a high level of anxiety suffer chemobrain more intensely. There’s really not much to be done about this, although Nurse M suggested I try acupuncture and a guided meditation app. (I will!) But Dr. M offered the most important piece of advice on this, I think, which is that I need to take more time to rest my brain when I feel the need.

I’ve been getting a little better about taking this time, but it’s not my nature to rest, so this is a hard change for me. It’s clear, though, that I need to make the time to chill the F out more often. Reclaiming Fridays for myself is a good start, since I let work creep back in over the summer on this “day of rest” I had assigned myself at the start of chemo. But I’ll also try Nurse M’s meditation app for a quick 5-15 minute rest during the day. And sure, I’ll even give acupuncture a try. Nurse M insisted that I do it a few times before giving up. Looks like I have something to schedule for Friday. 🙂

So, there you have it. This is definitely not the news we wanted or were expecting today. I had been counting down the days until I’d be done with chemo, and it looks like I’ll need to count an extra 21 of them now.

Finally, I have to note that it seems my super power is having an extraordinary tolerance for cancer treatment. I made it through 25 (or 32?) blasts of pelvic radiation and an ileostomy in 2011, another 25 blasts of breast radiation in 2015, and now 13 weeks and counting of chemo. The pelvic radiation and ileostomy knocked me on my ass, admittedly, but I made it for the full prescribed treatment in both cases. In spite of the diarrhea and rash and fatigue and hair loss and weird nails and neuropathy and most of all that fucking inconvenient chemobrain I’m experiencing now, I’m doing really well at this point…which is why they feel comfortable giving me 5 more weeks of this shit.

Years ago, my friend P and her brother famously started an ongoing conversation among our group of grad school friends about our respective mediocre super powers. One of P’s mediocre super powers is knowing every lyric to practically every song from the 1980s and 1990s. She has many other serious super powers, by the way, as does nearly everyone I know. But it’s fun to talk about your mediocre super powers. I guess I’d say that one of mine is the ability to smell decomposing organic matter a week before anyone else with normal olfactory abilities.

But now I think it’s fair to say this ability to withstand chemo #likeaboss is more than a mediocre super power. Even though it’s all really inconvenient.

When I told my friend K about this apparent super power today, she cracked up and suggested a sort of chemo super hero doll along these lines, “IV drip and all.” So, I’ll leave you on a humorous note by sharing my ABSOLUTELY HORRIBLE drawing of Chemotherapy Boss. (I originally called her Chemotherapy Girl, but screw that. Let’s empower this lady.) Of course, like any doll, you have to work out the accessory line to make the real money.

xo

 

Cancer Is Inconvenient