Addendum to So.Many.Pills

My last post (I Didn’t Expect THAT: So.Many.Pills) was about the overwhelming number of medications associated with cancer treatment, particularly for someone not used to taking pills. But this topic deserves a closer look…

If I had to choose one of the most frightening aspects of cancer treatment, it would be side effects. This is not like popping an aspirin for a headache. These are medications that can take a heavy toll. One of my greatest sources of anxiety was deciding whether to take a pill or try to “tough it out”.

After surgery, I was given a generic form of something approximating Norco. Some people jokingly commented that this was a “perk” of treatment, but I had read the insert that came with the medication and wanted nothing to do with it. The only reason that I took it (a single half dose) was that by the evening I had a horrible headache, more painful than anything at the surgery site and probably due to a combination of the anesthesia and not being able to drink coffee that morning.

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Just…no.

It was a miserable night, since the half dose didn’t do much and I tossed in bed, googling interactions between my pill and ibuprofin, which is what I really wanted to take but hadn’t due to potential bleeding issues. At about 5am, satisfied that enough time had passed from my half dose of pain reliever, I took the ibuprofin and finally got some sleep. Wish I’d taken it first instead of the “oooo-you’re-so-lucky” Norco.

Nausea from chemo was another terrifying thought. The nurses had warned me not to risk it; if I started to feel queasy, take anti-nausea meds. Once vomiting sets in, I was told, it was hard to stop. Of course, the side effects associated with the meds were rather extensive and just reading the label made me anxious. There were two different meds and the idea was this: take the first one (ondonsetron) and then if I need a booster in four hours, take the second one (prochlorperazine). And then alternate like that every four hours, if necessary.

Sounds reasonable, except that a couple of nights after my first infusion I mixed up the pills and ended up taking prochlorperazine first. Prochlorperazine is an anti-psychotic (I guess, with anti-nausea properties?) and it was responsible for one of the roughest nights of my life. It was that night that I swore I’d pierced the veil between this world and the next and decided that death was a fair alternative to what I was feeling.

Somehow, I survived those first nights, but I wasn’t keen to go through that again.

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Not a perfect solution, but better than the alternatives.

I live in a state that has legalized cannabis, and was sent a shipment of CBD cookies by one of my brothers who had used them to control nausea from migraines. I was encouraged to try them since I was told CBD didn’t have side effects. Of course, as I mentioned in the previous post, it also didn’t have clear dosing guidelines. I mean, this was a crumbly cookie – how do you dose that? My brother said something like, “I take a couple when I get a migraine.” My brother is also 6’3″. I figured I’d start with one.

Shortly after that, I fell into a weird sleep from which, an hour later, I woke with a gasp because I thought I’d stopped breathing. Mmmm, probably not the right dose for me. Four hours after I’d consumed the cookie I needed to pick up my son from school. I wasn’t high, of course, but I wasn’t feeling normal either. I made it there and back alive. It was at that point that I realized having to play mom while going through cancer treatment just plain sucked, but I digress…

Eventually I worked out a dose, about 1/5 to 1/4 of a cookie, which was 20-25 mg of CBD. This was a game-changer for me and I gratefully relied on CBD for the remainder of my treatment. Yes, I truly disliked the taste, and with the lining of my GI tract gone, eating a cookie was not first on my list but being able to calm my nausea without side effects was well worth it. It probably helped my anxiety too.

What it would have been like to go through treatment without being so fearful of what the medications were doing to me? Anxiety always got the best of me. As noted in my last post, getting to the point where I could limit the number of medications I took was key in helping me get through this experience.

While the physical effects were rough, the psychological effects were what magnified the discomfort, and that had to do with feeling so far out of my element. None of this was close to normal. Of course, my normal is not needing medications. That wasn’t happening with cancer, but once I figured out what was what and how much I could handle, treatment became more manageable.

I Didn’t Expect THAT: So.Many.Pills

I figured that there would be a lot of medication involved with cancer treatment. I just didn’t realize it would be THIS much.

I am not a big pill-taker. Besides vitamins here and there, the only thing I’d taken with any frequency had been ibuprofin, and that was only for menstrual cramps and knee pain. But then came breast cancer.

First there was Xanax, so that anxiety from my diagnosis wouldn’t cause me to lose too much weight before starting chemo. Then there were meds post-surgery: I took half a pill of generic Vicodin before switching to ibuprofin, fearful of taking anything for too long. But with chemo, I needed steroids for before/during/after to get me through the infusion’s worst effects. Then there was the chemo itself, and additional IV drugs to prevent an immediate reaction. The day after each infusion, I went in for an injection (Neulasta) to help bring my white blood cell count back up.

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Some of my medications. Just looking at them made me feel sicker!

There were drugs to help deal with side effects. And then other drugs to handle the side effects of those drugs. I had more pills with my name on it than I’d ever had in my life. It was terrifying to me. I’d gone from being a remarkably healthy 50-something to (what felt to me like) a seriously ill patient with a life threatening disease.

In all honesty, most of these drugs I didn’t even take. While I did need the Xanax, I worked hard to reduced the dose until I parted with it completely. In its place, I meditated. After the first infusion and some unfortunate confusion regarding which anti-nausea pill to take first, resulting in one of the roughest nights of my life, I switched to CBD (cannabidiol) oil to prevent vomiting. Initially this required experimentation, as research in the area is relatively young due to an evolving legal landscape, resulting in lack of reliable dosing guidelines. But once I got that down, CBD eliminated the need for a myriad other medications because it didn’t have side effects.

Even the Claritin, which I was told to take for bone pain commonly associated with the Neulasta shots, was unnecessary. I took it for a while until I realized that I wasn’t experiencing significant pain and could do without it.

Limiting medications that weren’t completely necessary didn’t have negative physical effects and, even better, benefited me psychologically. I was constantly striving for normality, and that doesn’t come easily with cancer treatment. Pill-popping was an unfamiliar concept for me, so getting back to where I felt comfortable, taking as few medications as I could safely tolerate, was critical.

Unfortunately, I’m not quite done yet. The toughest part is over, but the last chapter of  my pill-taking experience includes a decade of the estradiol-blocking drug Tamoxifen. It’s a single pill I have to take on a daily basis to reduce the chances of cancer recurrence, and I deal by looking at it as an excuse to hydrate before getting out of bed every morning. Drink a bunch of water and, oh, slip that pill in there too.

I wish I didn’t even have to take the Tamoxifen. But it is what it is. I’m looking forward to the day when I can be completely pill-free, and trying to appreciate that after everything I’ve been through, there’s only one medication left.

I Didn’t Expect THAT: No Body Odor

Okay, this one was just weird. File this under “not all cancer treatment side effects are bad.”

How shall I put this? After I finished chemo, I noticed that I didn’t smell. At all. No armpit odor, no sweaty crotch odor, nothing. I asked my husband to check; he concurred.

“You smell like…skin,” was the best description he could muster. Once again, I took to the Internet, that repository of information about anything and everything. Except that I found nothing.

Eventually, I came across a forum where women were discussing bad smells associated with their tumors. Again, not what I was looking for. But nestled within all those posts was a single comment by someone that she had lost all her body odor for about two and a half years. Finally! Someone else experiencing the same cool weirdness.

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I don’t even need deodorant, but why not smell fruity?

So this probably won’t last forever, but for now, I can get away with all-natural deodorants and not worry that they won’t have staying power. To be clear, I sweat, I just don’t smell like it. My teenage daughter is jealous. My teenage son, of course, couldn’t care less, although I really wish he would. The smell of testosterone is strong with that one.

Regardless, this is one side effect that I’m going to enjoy as long as I can.

I Didn’t Expect THAT: Chemo Port

When you’re told that you have cancer and will need the full complement of treatments, you focus on the concepts of surgery, chemotherapy and radiation. Chemo, for example, can be frightening to think about because of purported its side effects, so you gloss over the details. But when you get down to a practical level and start learning about exactly how the infusions will take place…

I knew I needed chemo. I assumed that it would be administered intravenously, as in, into an arm vein with the bag o’ drugs hanging from the IV pole. Ahhh, but the drugs are caustic and would cause damage to a smaller vein, so to avoid that, they go directly into a major blood vessel to allow for quicker mixing with blood, faster circulation through your body and much less discomfort. This is done through a port.

Let me be clear: a chemo port is a revolutionary device that has made administration of chemo drugs far easier on the patient. Not having the port would be absolutely miserable and likely necessitate breaks in treatment as the patient recovered.

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This little marvel makes chemo much easier. The dark purple circle is a soft membrane into which the needle is inserted (through the skin). The tube delivers the meds straight into a major vessel. Easy peasy!

However, it wasn’t until we were talking about setting up a port implantation appointment that I began to grasp what was actually going to happen: a small disk would be implanted onto my chest wall, just under the skin, from which a thin flexible tube would run up and over my clavicle and then down into the blood vessel (probably the superior vena cava, but I didn’t ask). Once I started infusions, the needle from the bag containing the drugs would be inserted through my skin, through a membrane on the port, and that was it for the needle prick. Simple and relatively painless.

But about that port. To me, “port placement”, as the implantation procedure was called, was surgery. And I wasn’t great at handling surgery. Usually I like a lot of info to prep me for what’s coming, but I couldn’t even handle watching a video of a placement procedure.

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After port placement. I was acutely aware of a foreign body poking out of me. Alien, anyone?

I don’t have a lot of fat on my chest. There was nothing to nestle the port down into, and as a result, after implantation my skin was stretched tight. I could see the lump in my chest and I could see the tube as it ran up from the lump, over the clavicle. Turning my head pulled the skin — ow! I avoided looking at it, let alone touching it. All I could think was that I had an entire year of this.

Eventually the skin stretched to accommodate the port, but because it stuck out like a little knob, I worried about twacking it. When I hit it with a dumbbell during a workout, I cried. Seatbelts were a constant concern; I was afraid that the port would get dislodged and injure me in a car accident. Hugs hurt and I instinctively turned that side away from people. And of course, in the event of a huge catastrophe that resulted in the collapse of society and all modern services including port removal procedures, I might be stuck with that thing on my chest for the rest of my pathetic little life.

Eventually, the day came when I finished my last infusion and my oncologist gave the go-ahead for port removal. That thing was out within a week. Removal was simpler than implantation, done under local anesthesia without the need for fasting, and even all the tugging to get it loose didn’t bother me. I was so happy to have it out.

But I’d carried it inside me longer than I had carried either of my children, so I asked to take the port home. While I had hated it inside me, I was so grateful for what it had done. I mean, I couldn’t just let them throw it out! It was handed to me in a bright pink box designed for dentures (apparently, keeping your port isn’t popular enough for the creation of “used port” containers) and now sits on my desk. I prefer it there rather than in my chest.

 

 

Memories of Blood, Sweat and Tears

There are some odd memories from my chemo experience that stick in my head. It was such a jumbled, frantic time when I was struggling to get a handle on what I was dealing with. I was going through my first few courses of chemo when my daughter was diligently learning the dance steps to K-Pop group BTS’ song, Blood, Sweat and Tears. Lying on the couch in the living room as she followed the dance practice video, I became involuntarily familiar with the song and its accompanying dance moves. Because of the frequency with which I heard the music, I was convinced that either I was going to love it — or would get nauseated and anxious whenever I heard the opening bars.

I never developed an aversion to it. In fact, it remains one of my favorite music videos. Any associations that I have with the song also include knowledge of having endured the chemotherapy medications and emerged on the other side of treatment. That positive perspective gives me a feeling of accomplishment. I can watch the video without any “baggage”, which is a feat for things cancer-related. The surreal nature of the video, coupled with the fact that most of it isn’t even in English, reflects my disoriented state during treatment: colorfully dreamy, occasionally inexplicable and an escape when reality became “too real” to handle.

This Is Your Arm On Drugs, Part II

While my previous post had focused on appearance, how I looked was a relatively small part of getting back to where I’d been physically. Much more important was the hit my strength and endurance levels took, and those don’t really show up in the photos I posted. While there’s not a huge change in muscle size, my strength did decrease significantly, not surprising given that I was going through cancer treatment. At the “height” of each chemo infusion, I had trouble walking, sometimes even lifting my head from the pillow. Movements required a lot of effort.

All that rest time affected my physical ability. I’d been told not to row (Concept2 erg) for four weeks after the lumpectomy on my left breast. That was tough because rowing is a form of meditation for me, the quintessential mindful movement — it was stress management that I desperately needed. I wanted to follow the rules so I stayed off the erg, but incorporated light weights into my “weenie” workouts. That helped, but I felt frustrated and weak.

Then, after those four weeks were almost over, I had my chemo port implanted on the right side of my chest wall, and again was told not to row for 3-4 weeks. Well, a week after port placement, I had my first infusion. ARGH! Sooooo, I wasn’t able to get back to rowing until I’d recovered from my first chemo.

My strength continued to increase after each of the first three infusions, which was gratifying. I’d gotten to about 2/3 of my pre-surgery strength training weight load. But after the 4th infusion, the fatigue started to catch up with me and I had to slow down. I was tired! To make matters worse, my bloodwork before the 5th infusion revealed an increase in the levels of two liver enzymes, ALT and AST. Chemo is hard on the liver, which works overtime to clear out the drugs from your system. If those numbers continued to go up, my 6th infusion would be delayed.

Now, you might think: what’s the big deal, waiting a week or two longer for the last infusion? Psychologically that would have been devastating. For me, getting through chemo was more than enduring its physical effects; the mental component was huge because of the stark contrast between my level of fitness previously compared to where cancer had knocked me down to. The dates of each infusion were seared into my mind, and I really needed chemo to be over.

My solution was to implement every means imaginable for decreasing liver enzyme levels. That included foregoing heavy lifting, according to my research. Anything, to finish on time. For the weeks before my last chemo, I was a green-tea-guzzling, dark-leafy-green-devouring, turmeric-supplement-popping, hyper-hydrated couch potato. Thankfully, my numbers went down and I finished chemo as scheduled.

The final infusion required the longest recovery. Once I got over the worst of the side effects, I could still only row 500 meters at a time at a harder pace, and my weight load and repetitions had dropped dramatically when strength training. While I was done with the hard chemo, I still had Herceptin infusions (and still had the port implanted, which got in the way) and those affected my heart, so I got tired more quickly. Not chemo-tired, but tired enough. I focused first on improving muscle endurance (lighter weights, higher reps) and then gradually increased the weight and dropped the reps to build muscle back.

There was a fire under my butt to get back to my version of “normal”. Ultimately, regaining strength was the easy part. The hard part was getting back to where I had been mentally, and even now I’m not sure I’m there yet. But who knows if I was in as good a state pre-diagnosis as I think I was?

My focus now is to train as hard as I can, stay as active as possible and not succumb to the weight gain that seems to afflict the average middle-ager. I guess I’m trying to find a “recipe” that will keep the cancer from coming back. It probably doesn’t exist, but seeking it is one way for me to maintain a semblance of control over something that is ultimately uncontrollable.

This Is Your Arm On Drugs, Part I

Chemo drugs, that is.

Say “chemo patient” and people think of a hairless, skeletal person who could be blown down by a gentle breeze. But is that really what happens?

I was anxious about how much chemo was going to ravage me, so I decided to document everything. That way when treatment was over, I would know how much work I had to do to rebuild myself. The simplest way for me to do this was to photograph my right biceps. The cancer was on my left side and I had not been using that arm as much, so the right arm would provide a more accurate view of what chemo treatment was doing to lean mass.

I hope you’ll forgive the following photos. It was never my intention to actually post these (or else I would have chosen a better background!). The cropping is a bit off and I’ve only now realized that even my biceps curl isn’t consistent throughout all the photos. In my defense, I was focused on getting through treatment, and worrying about getting the angles and lighting right was the last thing on my mind. All these pics were taken on the mornings of my infusion days.

Infusion 1 – 4/27/2017:

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Infusion 2 – 5/18/2017:

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Infusion 3 – 6/8/2017:

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Infusion 4 – 6/29/2017:

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Infusion 5 – 7/20/2017:

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Infusion 6 – 8/10/2017:

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Is there a difference? I think there is, even with the relatively crappy and inconsistent photos. I also think that hanging towels over the door makes the bathroom look messy. And, YEOW, I am mole-y!

Six courses of chemo (Taxotere and Carboplatin), one every three weeks, won’t destroy you, although the drugs do smack you around a lot. It would take about a week or so to recover following each infusion, at which point I could work out again. As the infusions went on, the recovery time increased.

So, no, my chemo regimen didn’t turn me into a skeleton, although my weight did take a hit; there were times that I was literally too tired to eat or my GI tract hadn’t fully recovered, making it tough to get food down. Because my infusions were spread out, I got a pretty hefty dose. But women whose cancer dictates weekly infusions, while possibly receiving smaller doses, don’t get the same amount of time to recover and the treatment effects build up. In that sense, I was very fortunate, and that made it possible to maintain my strength.

Once again, my worst fears weren’t realized. It took time to get back to feeling normal and training hard again, but I got there.

 

What Is Up With My Hair?

But let me back up a bit. My hair has been an issue throughout all of cancer treatment. As everyone knows, the hallmark of a cancer patient is a bald head. That’s pretty unmistakable. Being told you have cancer and waiting for test results is anxiety-provoking because — besides the obvious fact that you have freakin’ cancer — you don’t know the extent of your treatment. Being told you don’t need chemo is a huge plus. For me, this was because then I wouldn’t be a “full Monty” cancer patient, and my perception was that my condition would not be quite as serious as if I were going all in and having to undergo the full spate of treatments (surgery, chemo, radiation). The reality of this is debatable, of course, but for me, finding out that I needed chemo meant giving up hope of all normality. This wasn’t going to be like taking a prescribed medication. This was going to change me physically, and everyone would know.

I didn’t shy away from telling people of my diagnosis, particularly those who were going to see me on a frequent basis. I mean, who was I kidding?

I’d always had long-ish hair, but when it started coming out by the handful, the thought of leaving a hairy trail in my wake was unbearable. I entreated my husband to get the clippers and off everything went. My daughter was supposed to film the entire thing (I was bound and determined to record my experiences for posterity) but this whole episode was a little overwhelming and I started crying…and my sweet kid didn’t want to film a breakdown so she only took stills. I really wanted the video, but whatever. At least I had photos. My husband had fun leading me through an evolution of punk haircuts that allowed me to relive the 80s, but when it was all said and done, I felt better and promptly sent out the photos to close relatives. I got compliments on my headshape and was told that I had dainty elf-like ears. The world of cool Halloween costumes opened up for me.

And man, did I look weird.

So, for the next however-many months I was all about scarves and hats. I got used to always having something on my head because my dream of being the “cool bald chick” didn’t materialize. With my hair gone, I had a very good view of my scalp, and it looked terrible. I guess being a Northern European in a city on the same latitude as Morocco was not kind to my skin, and my scalp displayed the abuse it had suffered all those sunny, hatless days. I had some pretty incredible moles, and, look, I already had breast cancer – I didn’t want to have to deal with skin cancer too. My lid stayed capped.

Now, everything-hair was in a holding pattern until the end of my chemo. First of all, when you google “Taxotere” (one of my chemo drugs) and “hair”, the first entry that comes up is for a law firm that is planning a class action suit against the makers of Taxotere on behalf of all the women who suffered permanent alopecia after taking the drug. This is NOT what you want to see.

After all that, I was pretty impatient about hair regrowth. There is a small percentage of women who do not get their hair back, but it doesn’t matter how small that percentage is. When you’re holding your breath and waiting for your hair to return, you’re convinced that you’re part of it. To make matters worse, my hair had gone all white/gray so it was even harder to see. I gave in to the folly of reading about other women’s experiences with regrowth, and they all seemed to grow hair more quickly. Or not at all.

By this point, I looked like a cross between Yoda and Gollum, since a few crazy hairs had apparently not gotten the memo and decided to keep growing throughout my treatment. Not a lot, just enough to make my scalp look like it was undergoing an identity crisis. My eyelashes were still clinging for dear life, and I had high hopes of being able to emerge on the other side of this journey with some fringe around my eyes…but no. A few weeks after chemo ended, all but a couple of my lashes went the way of my eyebrows. Gone. Nothing quite like being hairless to make you look like an alien from a 70s sci-fi flick.

So I waited. I whined in my oncologist’s office, and cried in my counselor’s. I don’t have much faith when it comes to being patient and seeing how things turn out. My impatience was driven by fear. Every trip to the bathroom was another opportunity to stare in the mirror, trying to determine was that a shadow or a new hair? This was complicated by the fact that my previously excellent eyesight is changing and I’m not adjusting well to that. I forget to bring reading glasses and think that the world has just gone fuzzy, like that’s perfectly normal. To my glassless eyes, I still looked bald.

But at one point I was examining my forehead, where the hairs reeeeeally took their time coming in (what’s up with that???), and saw teeny translucent sprouts. Finally? Trip after trip to the bathroom mirror, squinting from every angle, the hairs were unmistakable. Yes, foreheads are great things, but I didn’t need so much of mine. And finally it was getting coverage.

Let’s fast-forward to now. I have hair. It’s white and I look like my kids’ grandma. But regardless, I have hair and that makes me so happy. Let me say it a few times: hair, hair, hair! And not only do I have hair, I have gravity-defying hair. It’s a few inches long and reaching for the stars. I use hair styling products with names like “taffy” and “putty” to keep it in place, but when I wake up in the morning I look like a Pomeranian. I didn’t even realize my hair could do that.

Note that I am not complaining. My eyelashes came back. My eyebrows didn’t, but that pulled me into the creative world of brow design. Once I got past the “my-brows-were-drawn-by-a-five-year-old” stage, I got into the look and expanded the rest of my make-up to balance my face out. In the end, I look more put together. At the same time, I don’t look like my old self. But perhaps that’s not so bad – I am not my old self inside, and that’s being reflected on the outside. Yes, sometimes I walk past a mirror and shock myself, but this journey has been transformative and I’m going to have to get used to that. As with everything, deep breaths.