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

The Good, the Bad, and the Ugly

The Good:

As of this week, my liver enzyme levels are all within or just above normal ranges. Even better, my liver tumor markers are way down.

I just realized that I misspelled “compels.” I’m going to blame this on chemo brain.

I’m also thrilled to report that I didn’t have a Herceptin exorcism this week. What a relief! In fact, I didn’t have any bad responses to the full THP treatment this week. Nurse M had me all set up for a bed, instead of a chair, just in case. But I ended up sleeping through most of it in a Benadryl-driven stupor. Husband still watched me like a hawk, though, and gently relaxed my hand when it had become closed in a tight fist at one point. (I don’t know why I was making a fist while sleeping. It probably had something to do with the current state of world affairs, though.)

The side effects remain quite mild, thankfully. The worst one is difficulty sleeping, which is apparently normal. Annoying, but normal. As of this week, I’ve officially started to lose my hair, though I’ve got so much of it that I think it could take a little while before this becomes noticeable. I don’t know how to define “a while” here, but I’m crossing my fingers for at least a week. Next week is a big deal at work, our Annual Science Immersion Workshop for Journalists and 20th Annual Public Lecture Series. I will have a smaller presence this year than is normal, but I’ll still be around much of the time, and it would be a great stroke of luck if I didn’t have to wear hats or scarves to hide any strange bald patches on my head during that week.

While I’m on the good part of this post, I need to offer a shout-out here for all the amazing people I work with. They’ve taken so much off my plate, layered it on their own already overloaded plates, and eaten the whole gnarly mess with smiles on their faces. Thanks, Team Metcalf, and extended Team Metcalf.

The Bad:

I had a serious dose of reality from Dr. M during our on-treatment visit this week. Even though I knew this would be a 12-16 week course of chemo, Husband and I were unsure of how long the antibody treatment would go. I had originally assumed it would also be 12-16 weeks, but Dr. A, the pharmacist, had told us on week 1 that the Perjeta and Herceptin are often given every 3 weeks for a full year. I finally remembered to ask Dr. M about this during this week’s consult.

The conversation went something like this:

Me: How long will I continue with the Perjeta and Herceptin?

Dr. M: Indefinitely.

Me:Image result for fuck! meme

Dr. M went on to explain that they stick with what works, for as long as it works. This stuff is clearly working, which is good. But it had never occurred to me that I would be doing this for the rest of my life.

He then asked me, “didn’t you think this would be the case, though?” I told him that I thought I would have to stop and start chemo periodically. He jumped in to clarify that it would be better to think of this as “intensifying and de-intensifying, rather than starting and stopping.” I’m not even sure what that means, but I don’t like it.

I’ve been pretty bummed out about this. I’ve gone through this cancer shit three times now. It already changed my life in countless ways. But at least I’ve been able to get through the crisis and then re-calibrate my life. Sure, life has become a little different after each of these crises. In some ways, life has become VERY different. But for the most part I (and we, Husband and I) have been able to find my/our way through these various circles of hell and get to a place that is manageable. (I realize I’m totally screwing up this allusion to Dante’s Inferno, but I’ve never read it. Forgive me. Frankly, even if I had read it last week I probably would have forgotten it by now. Because chemo brain.)

My dad offered a very helpful perspective on this. He suggested that this is very similar to being a person with any type of chronic condition, like someone with diabetes or kidney failure. In my case, instead of needing insulin therapy or dialysis, I need these damn antibodies and, occasionally, chemotherapy. This is a very rational way to think about my situation and actually makes me feel a little better about it. But I’m still pissed.

The Ugly:

Because it was the “long day” at DF this week, and because I was blissfully free of the aforementioned Herceptin exorcism this time, Husband and I had lots of time to talk with Nurse M. We learned that he has been an oncology nurse for 40 years. FORTY YEARS. This man should be up for sainthood. I can’t imagine what it takes to keep a person in this field for that long.

As you might imagine, cancer treatment has come a very long way over the course of Nurse M’s career. When he first started, there were no anti-vomiting meds (“antiemetics”), and the chemotherapies were, of course, far less sophisticated than they are now. As a result, patients would just endlessly vomit during treatment. M said that they would leave a basin at every patient’s bed, and the nurses would spend much of their time running around to empty these basins and provide clean ones. To help patients get through this ordeal, the standard of care was to sedate them during treatment–a rather risky proposition given all that vomiting.

M said he remembered sending a young patient who was a student at Harvard back to his dorm each week, completely knocked out by the sedatives. The nurses had to put him in the cab and give the driver instructions on where to take him. The student’s friends would meet him at the dorm and get him up to his room. This was normal.

The chemo treatments took such a toll on patients that they would frequently spend up to a week in the hospital to recover, at which point they would have to go back for treatment.

And even for those patients who didn’t need to spend time in the hospital, their associations with treatment and vomiting were so strong that they would carry over into other aspects of their lives. M said he would sometimes run into patients at the grocery store, or even restaurants, and the patients would involuntarily vomit on the spot, simply because they connected M and his colleagues with that response.

This broke my heart. Obviously this was horrible for the patients, who were already experiencing intense pain and suffering, and didn’t need the extra embarrassment of throwing up in a restaurant. (!!) But it also must have been psychologically damaging for the nurses, who only tried to care for these people and give them some dignity.

That’s ugly.

So, as I’ve felt sorry for myself over the past few days about the unexpected future that awaits me, I’ve also felt so intensely grateful that I don’t have to suffer as previous cancer patients have. Some day I’ll tell you about my Aunt Georgii, who was one of those breast cancer patients whose suffering in the 1980s paved the way for today’s patients to have a better time of it. I’m sure we all have those stories, but this is my blog, so there you go.

For now, I’ll leave you with one of my all-time favorite Aunt Georgii stories, a happy one. Georgii got married (the first time) very young. She had a smile that could light up a room, but this was not a woman known for her cooking knowledge. Shortly after getting married, Georgii decided she would bake a cherry pie for her new husband. She baked the pie and waited anxiously for him to come home and taste it, which he did. What she learned that day, thankfully, was that you should never use maraschino cherries to make a cherry pie.

Image result for maraschino cherry
I never thought to ask if she took the stems off.
The Good, the Bad, and the Ugly

Hair Today, Gone Tomorrow

One of the major and most well known side effects of chemotherapy is hair loss. It’s important to note that not every type of chemo causes total hair loss, and even when it’s expected, individual responses vary.

You may wonder why hair loss is so common with chemotherapy. It’s pretty simple, really. These drugs target fast-growing cells, but cancer cells aren’t the only ones that grow quickly in our bodies. Hair follicles, especially, grow very fast, thereby attracting the attention of the chemo drugs.

The informational website breastcancer.org offers a handy summary of the typical hair loss responses from a few common chemotherapies used for breast cancer.

As you can see, Taxol (my treatment), is the jackpot of hair loss, generally causing complete loss of hair all over the body. Yippee.

I have long hair. Thick hair. A lot of it. I’m one of those people who is often described by my hair. In fact, I’ve long argued that my long brown hair is the reason people often tell me I look “just like” their cousin/sister/aunt/best friend/brother’s ex-girlfriend, etc. People see a woman with long brown hair and glasses, and they see nothing else. I even gave this a name many years ago: “long brown haired woman syndrome.”

It is noteworthy, then, that I am going to lose this defining attribute as part of treatment, even if only for a little while. This is, of course, one of the most challenging outward aspects of chemotherapy for many people, especially women. It shouldn’t be too surprising that there is research underway to try to counteract this psychologically significant side effect. You may have heard of the cooling head caps that are said to minimize hair loss during chemo treatment, or perhaps the development of topical agents using nanoparticles that might reduce the accumulation of chemo drugs in hair follicles. That’s all well and good, but I won’t be using any of those things. I’m going whole hog, baby.

Don’t get me wrong: I know I’m going to freak out when I start losing my hair. I decided that it would be least traumatic for me to take some control of the situation by getting my hair cut short. I have this image of standing in the shower and sobbing as handfuls of hair come out of my head. This is the worst case scenario for me, and I want to avoid it. At least I can start by making sure that only small handfuls of hair come out. Plus, this allows me to try out a short haircut in a very low pressure way (I’ll probably only have it for a couple more weeks) and then donate the remainder.

This brings me to my Hair Loss Plan, or HLP.

HLP Step 1: take photo of self with long hair. Note length, texture, color and current status of brown to gray ratio. I think I’d give myself a B:G of 20:1 overall, with a 2:1 ratio over my forehead. I’m tracking that B:G ratio (sort of) for two reasons: wig makers don’t want hair with more than 5% grays (whew! Just made the cut), and I’m curious about how things will look when my hair grows back in a few months from now.

HLP Step 2: ask friend and awesome hairstylist to give me a short haircut. Pause while she squeals with glee. (No, not really. She was appropriately heartbroken, but you know how it goes with people who cut hair. Hairstylists gonna cut, just like surgeons.)

HLP Step 3: look at photos of short hairstyles to try to find something that…maybe?…will look good on me. Let’s pause for a moment to note that I have never had short hair in my life. Gulp. I have absolutely no idea what short hair will look like on me. I decided to shoot for something like this Michelle Williams look. But will my hair even do that??

HLP Step 4: down a couple of shots
Just kidding. No drinking for me right now. But if you want to get yourself one before proceeding, please go ahead.

HLP REAL Step 4: go for the haircut. Listen to friend’s expert opinion on short hair, including the fact that thin blonde hair is not likely to respond like thick brown hair. Hold breath. Marvel at the sheer quantity of hair that has been removed from your head.

That’s all my hair!
OMG!!
This really happened!

HLP Step 5: look in mirror. Pick jaw up from floor. Breathe big sigh of relief that I don’t look like a circus clown. In fact, as Mom pointed out, maybe I sort of look like Rachel Maddow.

Hmmm. Am I now afflicted with short brown haired woman syndrome?

 

HLP Step 6: order a scalp prosthetic
In one of our earlier meetings with Dr. M in May, he gave me a prescription for a “scalp prosthetic,” or what we normal people would call a wig. I will use this prescription, not least because wigs can be very expensive, and this will reduce the cost significantly. But I don’t expect to wear a wig very often. As my mom pointed out, wigs are hot, and even though this has been an atypically cool and rainy spring for southern New England, summer will arrive eventually.

HLP Step 7: wait for the inevitable.

So that’s the HLP. Depending on how I’m feeling, there may be a step 8, which could be “do your best Telly Savalas impression with a rousing rendition of ‘Who Loves Ya Baby?'” or “find some Star Trek: The Next Generation togs and dress up like Captain Picard.”

 

Image result for captain picard meme
This is what I might look like as Captain Picard preparing to whoop on cancer.

Or, you know, just wrap up my head and wait to see what happens on the other side of this madness.

Hair Today, Gone Tomorrow