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.

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.

Peace In Puzzle Pieces

One unexpected thing that had a big influence on me in terms of feeling support from others was a jigsaw puzzle in the oncological radiology’s waiting room. It was a large puzzle with a lot of pieces. Every day for six weeks, as I received radiation treatment, I saw that puzzle in various stages of progress. Eventually, I started poking around at it, and often I would be able to add a piece or two. The next day I came, more would have been completed — seems like a lot of us were poking!

This served as a lovely metaphor for what we, as patients, were going through: cancer is a puzzle, and treatment offers pieces that we put together in hope of finding our way through. All of us were working on this jigsaw puzzle at different levels of ability. Some were stronger than others, some had better support networks, but everyone was shuffling along at their own pace, completing their treatment puzzle, piece by piece, day by day. On days when treatment seemed never-ending, there was gratification to be found in the progress of the jigsaw puzzle.

I had never realized that working on jigsaw puzzles was so soothing. Just as in mindfulness meditation where you focus on the breath, the puzzle offers an opportunity to focus on a particular pattern, color or shape of a piece. It requires concentration, but this concentration comes easily. You don’t have to make yourself focus, it simply happens as you search for a piece.

Eventually, my radiation treatment ended and I left a partially completed puzzle in that cozy waiting room for others to finish, but I longed for that familiar feeling of comfort and quiet. That waiting room had been an inviting sanctuary where my only responsibility was to practice self-care. I wanted that to continue. It wasn’t long before I’d found puzzles to work on at home. I chose the images for how they made me feel, and for quite a few months afterwards, working on puzzles was a meditation. My family played the role of other patients, and together we enjoyed the satisfaction of putting the pieces together.

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Here are several of the puzzles I/we finished at home. Apologies again: as with most other photos in this blog, I never intended to post these online, so the photo quality is lacking. I’ve added info on where these puzzles can be found in case anyone is interested, especially if you’d like to see what the pictures look like under ideal conditions.

“Secret Garden” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): I was looking for a peaceful oasis and this image fit the bill. I loved the flowers and flying creatures, but particularly the koi, which brought a special zen to the picture. (Bad lighting – doesn’t do it justice!)

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“Marvelous Garden” by Oleg Gavrilov (Bits & Pieces, 500 pcs, Amazon.com): I love peacock blue, the architecture smacked of Tuscanny and the flowers (yes, pink ones) completed the scene. This remains my favorite puzzle to date.

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“Autumn Oasis II” by Alan Giana (Bits & Pieces, 500 pcs, Amazon.com): Autumn means that Halloween/Thanksgiving/Christmas are coming up soon, and after such a miserable year of fear and cancer treatments, I was so looking forward to a joyous holiday season.

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“Florence” by Eric Dowdle (Dowdle Puzzles, 500 pcs, dowdlefolkart.com but purchased at Costco): I missed visiting Florence during a European trip due to scheduling conflicts, but it remains one of my most-wanted cities to tour. Seeing Michelangelo’s David in person is on my bucket list! I particularly liked that this puzzle came with a little poster of the image that made putting it together a serene pleasure. The last thing you want is to get headache trying to match up teeny windows!

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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.

The Problem With Pink

The breast cancer awareness movement has done a good job of bringing cancer awareness to the forefront. Especially in October, which is Breast Cancer Awareness Month, it’s hard to see pink without thinking of breast cancer. This is particularly true for someone who has gone through cancer treatment, but I expect that many who haven’t strongly equate the color with the cancer too.

Certainly, it doesn’t hurt to distribute pink “Save the Boobies”-esque stickers, t-shirts and wrist bands. It’s acceptable to say “boobies” in polite company, to broach the subject of women’s health, and this push to pink-out everything has resulted in more funding for cancer research. People probably think it’s cooler to have “boobies” on your wrist band than something like “Save the Pancreas”, the cancer of which has a much higher mortality rate. But a pancreas doesn’t look as good in a bikini top.

There is a darker side to this, and it has nothing to do with the usual arguments against pinking everything out, which tend to be about companies making profits at the expense of women. This is about what it feels like to be diagnosed with breast cancer.

At some point, awareness hits a saturation point. I’m willing to bet that many women who have been diagnosed with breast cancer dislike the color pink on some level. The diagnosis is life-disrupting if not traumatic, and the constant reminder from all the pink ribbons and other paraphernalia can get nauseating. And I do mean that in a physical sense. For me, diagnosis = anxiety; anxiety = nausea; pink = breast cancer…well, math was never my strong suit, but this all adds up to pink = nausea.

As I sat alone waiting for my surgery, feeling very nauseated, my Nurse Navigator paid me a visit. Incidentally, these nurses are the greatest thing since sliced bread (probably even better!), as they are a knowledgeable liaison between the patient and everything medical. In any case, my nurse brought me a goodie bag. Yes, it was pink and it contained various useful items relevant to my surgery and future treatments. And yes, most of these items were pink too. I guess these days it’s hard to justify using any other color if you’re talking breast.

But there was one thing that was not pink, and it’s because it wasn’t pink that I realized right then and there what sort of a visceral response I’d been having to all the pink stuff. It was a soft and springy heart-shaped pillow to be placed in the armpit to comfortably support the affected arm after surgery, and it was purple. Okay, with pink accents, but close enough. It was PURPLE!

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This is a good place to mention that I make strong associations between emotions and my environment. This is a form of contextual conditioning. I’m sure I’ll write more about that in the future, but for now, I can tell you that having something not-pink that I used daily until my incisions healed, and having it be completely relevant to breast cancer treatment…but again, not-pink…actually took the edge off my anxiety. I was more likely to reach for it because at a time when I needed to relax and recover, the color didn’t remind me of my cancer.

That may sound unbelievable, but contextual conditioning is like that. I love that pillow and I love that it’s purple. And it’s really pretty amazing how my brain perceives that squishy little purple pillow as being so nice to have around. Don’t think I would have had the same response had it been pink.

A Year With Tamoxifen

One of the most distressing parts of going through cancer treatment was that I thought it would “ruin everything”, even if it saved my life. Physically, I was really enjoying my 50s and hadn’t noticed much of a drop in endurance and strength, and certainly wasn’t experiencing menopausal symptoms. But with my diagnosis came the news that, because I had an estrogen receptor positive tumor, I’d need to be taking estrogen-blocking Tamoxifen (or an aromatase inhibitor) for a decade.

A decade is a long time! Chemo was only six courses over about four months and radiation lasted only six weeks — all time-limited and psychologically doable. But Tamoxifen would be with me for ten years, and presumably, so would the troublesome side effects, according to just about every woman who was taking it. They spoke about how difficult it was to stick to the daily regimen, knowing that it was responsible for horrible hot flashes and night sweats — one woman even said that she couldn’t exercise due to the severity of her symptoms.

Not exercise?!?! My version of hell: a sedentary existence.

At this point, I was busy dying a thousand deaths. I started to question whether death by cancer was a preferable alternative to a decade of misery. Mind you, I hadn’t even begun taking Tamoxifen yet; all of this was fear-driven. I feared having no control over my own existence and the things that really mattered to me. Basically, this was an end to life as I knew it.

So, fast forward to today. I have been on Tamoxifen for a year. I’m still waiting for the misery. Please note, I do not, for a second, doubt that women struggle with Tamoxifen’s side effects and I have the utmost sympathy for them. I also realize that I’ve been very fortunate so far to not have those types of symptoms. Sometimes I feel a little warm and have to roll up my sleeves or take off a sweater. Being in stuffy rooms can feel uncomfortable. But these don’t constitute what has been described to me as a hot flash, and I cannot recall whether I had those same sensations prior to treatment. Before my diagnosis, I’d had some sweaty nights from stress; I haven’t had a single night like that since starting Tamoxifen.

I do have some memory issues, particularly distractibility and loss of focus. Sticking to one thing at a time is an absolute necessity or else I’ll get sidetracked. My libido took a hit too. But is that Tamoxifen, effects of chemo…or just the onset of menopause?

The bottom line is, I had beaten myself up over potential effects of a medication way before I’d experienced it. I’d ignored the number one rule of cancer: everyone’s experience is different. Oddly enough, that had been the mantra I repeated to everyone else, but I’m the one who needed the reminder. For me, Tamoxifen has not turned out to be the torture that I’d expected.

If there’s a take-home message from this, it’s that cancer is a complex disease and its treatment is equally complex. Just as there is personalized medicine, there are individual reactions to that medicine. I, for one, have convinced myself that I need to stay off the Internet, take a deep breath and have my own experience.

Gratitude for Community

My teenage daughter had her eyebrows threaded for the first time (her decision). The threading salon came highly recommended and it was bright and inviting with a peaceful vibe. On the wall by the entrance was a sign next to photos of the owner’s lovely children: “I am not lucky, I am blessed.”

Ok, you probably see where I’m going with this and it has nothing to do with eyebrows. As I waited for my daughter I read the sign over and over again and felt a rush of warm fuzzies. I feel the same way, not simply lucky, but blessed. And in that comfy little shop, I thought about where I was a year and a half ago, scared and disoriented after my diagnosis, feeling like my world was crashing in on me. That seems so far away now.

Later, I was less frantic and lost, but saw a future only as far out as my hand, living treatment to treatment, riding a roller coaster as I went from one new medical experience to the next. But even in the midst of treatment, when I took a moment to stop and look around, I knew that I had so much to be grateful for. Not the least of this were the people who cared for me: brilliant doctors, nurses, therapists and administrative personnel. When I pause to consider my treatment experience, the warmth of these people is what leaves me with such a positive feeling. It was the community of care that made a huge difference: the attending nurses in the infusion room, the radiation therapists that I saw daily for weeks, the other cancer patients, most of whom I never met, but with whom I shared the work of putting together a jigsaw puzzle in the waiting room as we all came for treatments throughout the day. That sense of community, of never feeling alone and always being supported, that’s what makes me feel so blessed right now.

Yes, when I finished my infusions, when I finished radiation, I jokingly told these wonderful people that I hoped I’d never see them again (they get that a lot), but every time I think of them, I am overwhelmed with gratitude.