Survivor’s Guilt and “Noel”

After posting about missing the “downtime” of chemotherapy, I need to talk about how much of a privilege it is to be here writing that. I get to reminisce about the positives of being allowed to have no other job but to rest and recover.

Sometimes I complain about chemo brain, sometimes I wonder why *I* got cancer when those who take worse care of themselves seem to get off scott-free. I’ve left the initial fears about death behind me. Yes, my cancer may come back, but right now I’m in a good place with a good prognosis. My reality is that I will be able to enjoy this holiday season and focus on being with family, feeling physically healthy and “normal” again.

I have friends who are currently going through treatment. And you can bet that they would give anything to not have to be there, in the same way that I would have when it was happening to me. Some of my friends may eventually get to the place that I am now; for others, this may be the last stage of their lives.

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“All we have to decide is what to do with the time that is given us.”   ~Gandalf, The Return of the King

This is not lost on me. In fact, it’s something that I think about a lot. As we approach Thanksgiving, I am very grateful that I’m doing well, not even a full year after completing my last treatment. In addition to my gratitude, however, I carry a lot of guilt. One in eight women will be diagnosed with breast cancer during their lifetime. And many will be diagnosed with other cancers or other life-threatening illnesses. At any given time, there are so many of us going through the shock, fear and psychological and physical suffering of various treatments. How can I complain about my lingering discomforts when I have the pleasure of being here and experiencing them?

There are many things that could have been worse for me. But they weren’t. The more time that passes, the less I worry about why I got cancer and wonder more why I am one of the fortunate ones. As difficult as it is to put my cancer experience behind me and move on as if nothing happened, it’s even harder to do so knowing that I am leaving behind others who will not make it.

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I’ve met a lot of fellow cancer patients in the infusion room, some with metastatic cancer. There’s one in particular I cannot forget. I’ll call her “Noel” since I met her heading into the 2017 holiday season and her mother privately told me that she wasn’t expected to survive past Christmas. Noel was a friendly and sweet woman with aggressive breast cancer. We chatted about hair regrowth as mine was just barely beginning to come back, and she shared with me Facebook photos of what her hair looked like after her first breast cancer treatments were completed. Eighteen months later, the cancer had returned with a vengeance. Noel was divorced with two pre-adolescent daughters. Her mother told me that as Noel’s situation deteriorated, it also devastated her daughters, who were witnesses to their mother’s decline. Luckily, their father was very supportive and provided as much care and love as he could.

I was heartbroken as I left the infusion room that day. I don’t know ultimately what happened to Noel, although I expect the worst. Cancer is a horrible beast that ravages the patient, but also takes the family down with it. I think, “What a blessing to not have to go through that.” But that thought catches on my conscience. I’m still here; do I deserve to be?

Recounting this story a year later, that guilt weighs even heavier now. I feel an obligation to make good use of the time remaining.

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.

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?