A Reflection on “Chemo Fatigue”

After posting videos from my final infusion where I described chemo fatigue, I felt it important to follow up with a debriefing.

I was not in a good headspace during that time. I had started a mindfulness meditation practice five months earlier but had too little experience and not enough training for it to significantly affect my mindset, 50+ years in the making.

When I write a cancer-related post, I straddle a line. On the one hand, I want to provide an admittedly subjective and honest account of what I experienced during treatment; on the other hand, understanding that we all come from different backgrounds and may have vastly different perceptions of what cancer means to us, I don’t want to color the reader’s view of what their experience might be like.

Cancer revealed a lot more about myself than I expected to find.

There have been times that I held back on projecting too much of my own personal state. I waited five years to post my videos on Chemo Fatigue because I didn’t know whether it was appropriate to do so. They remain some of the rawest and truest representations of the despair that I felt at the time. I was still very angry and frustrated, feeling what I recognize now as a deep sense of betrayal.

It was mindfulness meditation along with deep reflection, expert counseling and simply the passage of time that ended up bringing me out of the anger. That process took a lot longer than I ever expected. It also showed me aspects of my personality that I hadn’t understood before because I’d never had to confront them.

So while I still would never say that cancer had a positive effect on me, just as with many heavy life experiences, it took me to a new level of maturity and self-awareness. I am very thankful to be on this side of treatment, although I’m acutely aware that everything may change with the next scan. That makes every moment all the more precious.

Cancer, “Why Me?” and Mustard Seeds: The Path to Acceptance

At some point in a cancer patient’s life, there are certain questions that tend to come up. The most likely one of these is why we were singled out to have such a serious calamity befall us.

I went through a long period of this. I mean, loooong. The early posts of this blog are filled with agonized questions about why cancer hit me even when, by all accounts, it shouldn’t have. I posted about not having risk factors and blah blah blah. I kept going around and around and around on this, stuck on a hamster wheel that wouldn’t stop.

I clung to the same ride, unhappy but not wanting to get off.

Allow me to stress: cancer is a serious illness. That is not to be taken lightly. Most of us, regardless of lifestyle, experience profound shock with our cancer diagnosis. It may seem that life is cruel and unfair (well, it is) and that we didn’t deserve to get cancer (well, we didn’t).

I struggled with anger and frustration for years. It’s both embarrassing and freeing to admit that.

Acceptance is a process. I thought I’d accepted my situation a couple of years ago, but in retrospect, I hadn’t. Some days I felt holy and zen-like, floating on my own little cloud, but it was a sham. I’d have glimpses of acceptance and then a wave of anger and resentment would wash over me and I’d be pissed off for another week.

I thought God hated me. A purportedly loving and merciful being allowed this to happen. It was hard to not think of cancer as a blow against my value as a person because of how I interpreted my situation.

It wasn’t until I stepped outside the confines of that type of thinking that I gained a different perspective. I posted about re-writing my life (basically, viewing the same experiences through a different, more positive lens) which provided a glimpse of another way to assess what had happened. And when I heard the retelling of an ancient Buddhist tale I finally understood what it meant.

Never seen mustard seeds? Here they are. Kisa, however, came up empty-handed.

What was that tale? It was “Kisa Gotami and the Mustard Seed”. In brief, Kisa Gotami’s young son dies and she is so distraught–not understanding why she would deserve such a painful experience–that she goes to the Buddha in hopes that he can bring the son back from the dead.

The Buddha agrees to revive her son if she can bring him mustard seeds from households where no one has died. Of course, she cannot because death touches all living creatures. She is comforted by the realization that her sorrow is shared and understood by everyone in the community and she finds acceptance of her loss .

Another way of looking at this is that we all suffer. For me, it’s a reminder that while a cancer diagnosis is life-threatening, there are few (if any) humans on this Earth who have not experienced some form of loss or grief at some point in their lives. Yes, some of us bear a far greater burden than others–grave inequities exist. But they also bring profound opportunities for growth.

And while I (and I expect most cancer patients/survivors) would have preferred to experience this personal growth through means other than cancer, being able to be here in this moment, having turned the corner, is one of the most beautiful gifts I could ever receive.

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Two points need to be made here:

Point #1: Burdens are distributed unequally. Socioeconomic, racial and other disparities further tip the scales, making outcomes from a disease like cancer even worse. As a society, we haven’t come close to rebalancing this. Acceptance is easier for some than for others; no one has a right to preach to anyone else.

Point #2: It’s been over five years since my initial cancer diagnosis, and even longer that I’ve been worrying about it. As I mentioned above, it took a LONG time to get to this point of acceptance. Knowing this, I would never rush a new cancer patient to get here. Acceptance must come organically, and yes, sometimes never does. Cancer breaks hearts and no one experiences it in the same way. Be patient.

Gratitude, Every Night

One of the most intense emotions that I felt after being diagnosed with cancer was anger. I felt betrayed by my body and the medical community. I’d done everything that I had been told I was supposed to do to bring my breast cancer risk down to as close to zero as I could, and still cancer found me.

In reality, until we discover what causes cancer, we can never eliminate our risk of the disease. Of course, I wasn’t thinking like that. I had been completely blindsighted (as, I’ve learned, so many are) and was furious about it.

So when I read a suggestion about finding things to be grateful for, I scoffed at it. Until I actually thought about what I could potentially be grateful for.

The result was overwhelming. In the midst of what had gone wrong, there was so much that had gone right! So many things that could have been worse, so many lucky coincidences that improved my situation. So much to be grateful for! Where my way had been obstructed by brambles and thorns, now lay a welcoming path.

I sat slack-jawed, humbled by my many blessings, as if they had been planned out to benefit me. If I had to develop invasive breast cancer, then so many things were working together to make my journey easier.

I kept a gratitude list and continually added to it. Invariably when I sat down to write my mood would gently soften. Even so, I struggled. There was a perpetual tug of war between hot emotions and the soothing breeze of gratitude. Many times the heat would overtake me.

Gratitude returns the beauty that anger steals away.

Time has passed and distance offers perspective, and while I am not perfect in making space for all the frustration associated with repercussions of my treatment, I understand the importance of working on it.

Every night, therefore, right before bed, I make a list of five things that I am grateful for. They don’t need to be big and they don’t even need to have taken place that day (although often they have). If they’ve evoked gratitude, they qualify.

I can always find at least five things and that is a heartening thought.

Settling into bed, thoughts of wonderful things fill my head and put a smile on my face, shepherding me to sleep. There is no better way to end the day.