Recovery – Frantic Shanti

Bringing Calm into Healing Spaces: Shushing the BEEP with Yoko Sen

^{Title image: Photo by Adhy Savala on Unsplash}

After I was diagnosed with cancer, one of the things I dreaded the most was having to spend time in the hospital. I’d broken my leg when I was 12 and the four days (and nights) that I was hospitalized were horrible. I was depressed and wanted to go home.

As a cancer patient, I wanted nothing to do with all the beeping and buzzing medical equipment. While all my treatments ended up being out-patient–which I was sooo happy about–I spent enough time in the vicinity of medical devices to hear my share of annoying beeps. In fact, that was the last thing I remember before losing consciousness before my surgery…and the first thing I heard when I awoke.

Last time I checked, BEEP BEEP BEEP was *not* a soothing sound.
(Photo by Richard Catabay on Unsplash)

Apparently, I’m not the only one who dislikes the incessant jarring noises of hospital equipment. I recently had the pleasure of attending a webinar with Yoko Sen of Sen Sound, an electronic music artist who has worked with hospitals and medical device manufacturers to address the issue of disruptive noises in an environment that’s supposed to be conducive to healing.

The whistles, beeps, buzzes and alarms are anything but.

Yoko spoke about the stress levels of both patients and medical staff as being affected negatively by this noise pollution. Patients cannot rest and recover. Caregivers are constantly on edge about what piece of equipment is alarming. This is not an insignificant problem as at least in one case, a death resulted from a healthcare worker shutting down a patient’s alarm by their bedside in an effort to make the surroundings more soothing for them, and mistakenly silenced their entire alarm system.

Staff speak of “alarm fatigue”, when everything’s constantly alarming that dire situations are missed among the cacophany that is the hospital situation. The sounds follow healthcare workers home, like echoes that never go away.

Yoko herself was hospitalized some years ago and described the onslaught of noises as terrifying. So as a musician, she set out to help hospitals reduce unnecessary noises and then make the necessary sounds more pleasant while still remaining informative.

The talk was excellent and interactive as she let the audience vote on the different “textures” of sounds. Interestingly, we discovered that past experiences can significantly color the way that we perceive a sound. Yoko’s entire talk was both entertaining and eye-opening. Unfortunately, I do not have a recording of this particular webinar that I can post, but below is one of the videos about her work.

Yoko Sen is bringing beautiful sounds into the healing environment.

I love that not only is a musician looking for ways to make the hospital experience more, well, hospitable for both the healthcare teams and patients, but also that hospitals and device manufacturers themselves identify the stress caused by all these noises as an issue to be addressed.

One of the complaints that’s often voiced about western medicine is that it focuses on disease rather than prevention, on sickness rather than healing. This is a great example of efforts being taken to change that.

Hey Doctors! Before You Give a Cancer Diagnosis…

From time to time, I think back on my cancer experience (who am I kidding, I think about it every single day!) and wonder how things might have gone differently. Generally, I write for the cancer patient, but this post is directed at the doctor who delivers the diagnosis.

So…dear doctors:

Think very carefully about what else you want to tell a new cancer patient right after you tell them that they have cancer. It better not be important, because they’re not going to hear it. Once you deliver the diagnosis, a cancer patient’s executive level cognitive processes freeze, making comprehension difficult. Any further speech sounds like the “wah-wah-wah” talk of the adults in Charlie Brown cartoons.

For example, I was told two things by my radiologist, when he came into the room after he looked at my diagnostic ultrasound: (1) you have cancer, and (2) you’re going to be alright. Guess which one of those points I didn’t remember. I’m sure my doctor was trying to be cheery and supportive, but I can guarantee you it didn’t work.

Let’s face it, no matter how gently a doctor tries to break it to you, being told that you have cancer is devastating. It’s perfectly normal to be blown back by the news because your life is going to change drastically for at least a while, and maybe permanently. But, geez, doc, you should be prepared to repeat the same info at least several times and cut out the unnecessary bits. Your newly-designated cancer patient is going to have to need time to process the news!

Tip to the patient: bring someone with you to your subsequent visits who’s good at taking notes and is on an even keel. I brought my husband but he barely wrote anything down. Turns out, he was just as shocked as I was and wasn’t taking the news any better.

Hey, doc, I get that this is hard on you too. So please don’t think I don’t appreciate what you do (especially these days!). But please consider some of these things before you deliver your next cancer diagnosis. Thanks. 🙂

Following up on that, doc, the next thing that I would suggest is that you not give overly specific responses to questions based on assumptions you’re making. I asked about the recovery time from surgery, since I was terrified by the thought of going under the knife. Mine was early stage breast cancer, and ultimately I had a lumpectomy, but that same radiologist had warned me that recovery would take 4-6 weeks. Up to a month and a half?!? I whimpered something along the lines of, “But I have to work,” at which point he reminded me that my health was more important than my job.

I don’t know where he pulled out such a long recovery time, but being given that sort of time frame compounded my anxiety. Maybe he also said that some people have a shorter recovery time, but of course, I wasn’t processing info well and all I could remember was “4-6 weeks”.

So I would recommend to doctors, (1) if you really don’t know specifics, don’t offer estimates–I was back to work the week after my surgery, btw–and (2) please don’t blow off a patient’s concern about the importance of other aspects of their lives, like going to work. Yes, ultimately, as the saying goes, “if you don’t have your health, you don’t have anything.” But for many of us, if you don’t have a job, you don’t have health insurance! Everything in our lives is interconnected. It’s all important. Please keep that in mind.

Hey, nobody likes to deliver bad news and I know you’re trying your best. But the only thing worse than telling someone they have cancer is being the one it’s being told to. So please, be gentle. You will go home that evening possibly bummed that another one of your patients has cancer.

The patient is going home that evening embarking on one of the most frightening journeys of their life.

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.

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.