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

 

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Cancer Is Inconvenient

TCBY

Maybe that title made you think of the frozen yogurt company, with their catchy little four-note jingle.

That’s the tune I’m singing for something far less fun than frozen yogurt: PCCI.

Say it with me: Post-chemotherapy cognitive impairment.

AKA, Chemotherapy-associated cognitive impairment (CACI), Chemotherapy-related cognitive impairment (CRCI), AKA chemobrain.

I can’t summarize this any better than Dana Farber’s page on the issue (perhaps because I’m having problems finding words):

Symptoms may include decreased short-term memory, problems finding words, short attention span, and difficulty concentrating and multitasking.

I have EVERY SINGLE ONE of those symptoms. My difficulty concentrating also manifests as a discomfort with crowds–not just major crowds, but even party-sized crowds. It takes great effort to have a conversation right now, and if there are more than a couple people in the conversation, I’m so easily distracted that it becomes uncomfortable and even a little anxiety-producing.

On the up side, I have a really great excuse for being a total flake.

But the whole experience is pretty maddening. I can barely remember conversations that I’ve had hours (and let’s face it, sometimes minutes) afterward. I often find myself saying to people, “I just read, or maybe heard, or had a conversation with someone recently where they said xxx, but I just can’t remember where I heard/read this thing.” And sometimes I’m not even sure if I actually heard/read/had the conversation or if I just imagined it.

The International Cognition and Cancer Task Force reported that “neuropsychological studies have shown cognitive dysfunction in 13-70%” of chemotherapy patients. This wide range, according to the Task Force, is a function of different definitions of cognitive impairment and highly varied approaches toward evaluating the effects.

(Not for nothin’, but perhaps they want to start by finding one single clinical term for this so we’re not stuck with PCCI, CACI, CRCI, and however many other ways people have found to describe chemobrain in the medical literature…)

Interestingly (you know, interesting in one of those completely fucking annoying ways), women may be more susceptible to chemobrain than men, and some types of chemo seem to cause chemobrain more than others. Guess what? Taxol is one of the chemobrain culprits. Yay.

Studies of breast cancer patients have shown that those who reported cognitive impairment actually had changes in the resting states of their brain activity on MRI scans. Generally, these researchers think the brain’s network, the huge collection of neural synergies that characterize normal brain activity, becomes disorganized by chemo, reducing the efficiency of information transfer.

That’s all well and good, but the reality is that chemobrain is very poorly understood in terms of its near and long-term effects. Some people continue to feel these effects up to a year after treatment and 10-20% of patients experience them for many years.

I am desperately hoping that my biological freakishness doesn’t extend to this particular domain.

So, if you haven’t seen me for a while, or if I decline your party invitation, keep this in mind. And please remind me that I already told you this if I start explaining it again. 🙂

TCBY