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:

CHEMO1_20170427_cropped

Infusion 2 – 5/18/2017:

CHEMO2_20170518_cropped

Infusion 3 – 6/8/2017:

CHEMO3_20170608_cropped

Infusion 4 – 6/29/2017:

CHEMO4_20170629_cropped

Infusion 5 – 7/20/2017:

CHEMO5_20170720_cropped

Infusion 6 – 8/10/2017:

CHEMO6_20170810_cropped

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.

 

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!

PurpleHeart

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.

When Deep Breaths Don’t Calm

It’s an obvious understatement to say that getting cancer is stressful.

My treatment plan involved a lumpectomy first, then chemo and radiation, but just getting to the surgery wore me out emotionally. I’ve written before that I’d never experienced anesthesia before, certainly never had major surgery…and add to that, the surgery would confirm how far my cancer had spread so I was apprehensive about the whole thing.

Suffice it to say, I didn’t handle this process well. Two weeks prior to surgery, I had begun a mindfulness meditation practice at the suggestion of my radiation oncologist. This was a life-changing step for me, but I hadn’t had enough experience with meditation for it to truly benefit me as I was sitting in the “ready room”, waiting for my surgeon. I knew I had to breathe, but it was hard to focus when I was terrified.

The “breathe deeply” mantra was repeated by a number of nurses, probably because I looked like a wreck. I can honestly say that breathing deeply, as hard as I tried, didn’t work. Months later, I came across an article (and unfortunately, I cannot recall whom to credit for this) addressing this issue. The problem with focusing on the breath during periods of extreme anxiety is that the breath is most obvious in the center of the body. You know, right where your racing heart is. I couldn’t separate out the two, and as I was trying to slow my breathing, I was acutely aware of the pounding in my chest.

So, here’s the advice that I would give now: find a comfortable position and focus on your hands. Feel into them and focus on any sensations present in them. Fingers are sensitive, so it’s likely that you’ll feel something. Is there tingling there? Are they numb?What’s the texture of the material that they’re resting against? If you feel nothing, rub your hands together and focus on those sensations.While this type of meditation (essentially a body scan) is often done with eyes closed, depending on the individual and how frightening the surroundings are, it might even work better to keep the eyes open and look at the hands. But really look, so that you draw your attention away from the beating heart, and then gradually try to slow your breathing.

The idea is to keep your attention away from parts of the body that remind you of how anxious you are.

I can’t say that I would have completely relaxed had I known to do this. I had been dealing with runaway anxiety for the past weeks that my rudimentary meditation had only begun to chip away at. But it’s possible that I would have gotten myself into a more comfortable state as I waited for surgery. Definitely worth trying the next time you find that a breath focus doesn’t help with anxiety.

Lifting My Spirits

I received an unexpected but incredibly satisfying compliment today. It was from a worker at Trader Joe’s who made a flattering comment about my arms. A little background here: I like to work out, and even obtained a personal trainer certification when I was a stay-at-home-mom. While I’ve never trained people as a profession, I have maintained my certification over the years — in addition to a vigorous training schedule. I’ve been told that this is unusual for “a woman of my age”.

When I received my cancer diagnosis, I was shocked largely because in my mind my lifestyle didn’t seem to fit the profile of someone at high risk. One of my greatest fears as far as cancer was concerned was that it would affect my ability to train regularly. While so many people engage in eye-rolling when it comes to exercise — it’s popular to equate exercise with misery — having to take time off from working out was one of the most horrible outcomes I could imagine. My version of hell involves a sedentary existence. I train hard to enjoy my life, to be able to move and lift and not feel pain. I work out to live and that energizes me like nothing else. And anything that jeopardizes that is a death sentence to me.

Okay, maybe a little dramatic? But you get my point. I.Love.Exercise.

Today’s compliment was particularly poignant. During my 2017 doctor’s appointment to check out that suspicious lump in my breast, the doctor’s assistant commented that she wished she had my arms. I remembered that as I went through diagnostic tests and oncology visits and surgery. I followed my surgeon’s orders regarding not lifting heavy things (well, mostly, because “heavy” is negotiable), but as soon as that time limit passed, I was off and running. Exercise meant normality, and I craved feeling normal, as in “not sickly and dying from cancer”. There was mention of this nasty impediment to my life called lymphedema. I didn’t really think about it much until I was discussing lifting weights with my oncologist, who said, “Exactly HOW MUCH weight are we talking about here?” and sent me to the lymphedema specialists so that I wouldn’t go full-Schwartzenegger without knowing whether I was risking having my arm blow up. (It hasn’t so far.)

But my point: the compliment I received today made me feel like I’d come full circle. While, yeah, fear of death from cancer is a biggie, drastic changes to one’s lifestyle are also anxiety-provoking.

Today, I felt, I’m back.