Collateral Damage – Frantic Shanti

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:

Infusion 2 – 5/18/2017:

Infusion 3 – 6/8/2017:

Infusion 4 – 6/29/2017:

Infusion 5 – 7/20/2017:

Infusion 6 – 8/10/2017:

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.

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.

WHY Did I Just Do That?

I had an off-kilter dream last night. I was driving a co-worker somewhere and racking up points on my license. I leaned the car on one side — two wheels — to pass someone, then drove up on the curb to get around someone else. My co-worker looked nervous. When we were caught in a traffic jam, somebody pulled out a raggedy paper wand (think Harry Potter, but looking like a curly tree branch) to show my co-worker, complaining that it was the best he could do. My co-worker handed it to me, and for some inexplicable reason, I ate it. Then the fellow wanted it back and I didn’t want to admit what I’d done, but by that time the traffic had started moving again, so I sped away.

There were now several of us, and because we needed a place to work, I led our group to a friend’s house. It was a really nice place! Since it was the middle of the day, my friend was at work, so we simply went in (home invasion, anyone?). There, I repainted part of the room we were in as we ate pizza. I think I broke a few things too, but managed to glue them together. Finally my friend came home and gave me a hug as I apologized for not calling her before breaking into her house. She was totally cool with it.

All the while, as I was doing these crazy things, I kept asking myself, “WHY did I just do that?” But then I’d go on to the next crazy thing as if it were perfectly normal, followed by another “WTF???” from myself. I felt guilty and out of control, at least in between committing these various crimes.

You know those dreams you wake up from and think, “Whew! Only a dream!”? I wreaked enough havoc in this one to elicit that response. I’m writing about this because that’s how I feel sometimes. Like I’m stumbling around doing things that don’t make sense, only to catch myself after the fact and wonder what I was thinking. Granted, the things I’m doing are not likely to put me in jail or get me committed. But I seem to lose focus and get lost in a crack between the reality of the previous second and the reality of the next one. It’s as if I enter another dimension for a split-second before pulling myself out of it and going on.

This, they (the proverbial ‘they’) tell me, is normal. A weird cocktail of chemo brain, tamoxifen and getting pulled into menopause a bit before my time. I am trying to navigate this “normal” and don’t quite know what to do with it. Eventually it’s gotta pass, right?