February 2019 – Frantic Shanti

View from the Waiting Room

I am weirdly at ease.

Today is my 3-D mammogram, the one that will either confirm that I’m in breast cancer remission or that I’m going to have another rotten year (or more). Two years ago, around this time, I was completely racked with anxiety in preparation for the diagnostic mammogram and ultrasound that would detect my cancer.

I feel placid. Granted, I do self-exams on an almost-weekly basis (it’s a survivor thing) and was checked out by my oncologist early last month, so I know there’s nothing palpable there, although the 3-D mammogram could pick something smaller up. But I’ve also matured in my ability to let go of thoughts that drag my mind away to wild extremes, and instead accept what is happening in the moment.

I admit that I’m holding off on travel and hair expenses until after my mammogram, because if my cancer comes back, the money spent on them would be better put towards treatment. Neither a cross-country flight nor an edgy new haircut would be in the cards for me.

If I could have one superpower, it would be to remain calm in every situation.

Another reason for waiting on making plans? It’s because the agony associated with desperately clinging to the desire to be cancer-free and then having those hopes dashed is excruciating. So for the moment, hanging around in limbo with less emotion invested in an outcome provides more comfort.

I started meditating in an effort to free myself of expectations. Today I am able to make space within myself to hold the possibility of both remission and recurrence, and then to think about neither.

So I sit in a comfy robe as I wait for the radiologist’s assessment, feeling the warmth of the cup of tea in my hand. I am here now, focused on the present instead of potential outcomes. And this is the most peaceful place to be.

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Shortly after I wrote the above, the radiologist came in to confirm the good news. Another year, another clean bill of health.

Last year when I got the “all-clear” I was still finishing up treatments. And the news felt like a huge release.

This year, I felt much calmer. Not gonna lie — somewhere inside, try as I might to release all expectations, I still expected to be okay. But I was able to not focus on the outcome of the mammogram and instead go with the flow of the day. This is a first for me, so my ability to maintain that level of calm may be more significant than being cancer-free.

Oh, who am I kidding? Being cancer-free kicks ass!

Letting Go in 5…4…3…2…

Several nights ago I woke at 3am, my brain abuzz with images of what had taken place that day. In an effort to divert my attention and fall back to sleep I focused on my breath, but I was so groggy that I couldn’t concentrate effectively.

So instead I imagined a beautiful sunny field with chirping birds and various animals coming by to snuggle with me. It was the epitome of placidity and contentment. A darling fawn nuzzled me. Then a purring lion tenderly rubbed up against me. And attacked me.

Seriously??? This is my self-created fantasy and I can’t manage to keep it positive???

But perhaps I shouldn’t be surprised. I’m a few days out from a 3-D mammogram that I’ve managed not to think about because I’ve had such a busy week at work. It will be the first mammogram since completing all my cancer treatments, so it’s kind of a big deal. Somewhere in the back of my mind fears and what-ifs are simmering. It’s scanxiety rearing its ugly head.

People tell me that everything is going to be okay. But how can they say that? This is cancer. There is never a guarantee that everything will be okay. For others to say that to someone who’s been through the full spate of treatments sounds like a brush off. Even when everything is “okay”, it may still not be okay! And sometimes it’s worse.

Sure, Mr. Expectations, you look so cute and peaceful, but if I get too close, you’ll take my head off.

I wrote a letter to myself the evening before my original diagnostic mammogram way back in early 2017, trying to calm myself down because I was an anxious mess. And in that letter I told myself that I’d be able to go back and re-read it after the mammogram and chuckle about how worried I’d been and how everything actually worked out. I tried to reason myself into calm, noting how unlikely it was that I had cancer. That tenuous serenity was blown the next morning by the radiologist who read my scan.

I remember that crushing feeling — it’s what colors my experience right now. I want to believe that everything will be okay, and yet the spectre of possibilities hovers over me ready to potentially ruin my day (and life!). I don’t think that the cancer is back, but I’ve put off making summer travel plan. Just in case.

Gah, is this what the rest of my life will be like? Being fearful of making plans? That’s not a good use of the time I have left on this planet.

Mindfulness as espoused by Jon Kabat-Zinn (drawing heavily on the Buddhist wisdom of Thich Nhat Hanh) speaks of non-attachment. Having expectations and being attached to their outcome causes suffering. I can attest to that.

Trying to reason through to an “answer” only increases agony. So I will take deep breaths and stop thinking.

“Random Acts of Kindness” Day

Throughout my cancer treatment, it was the smiles, gentle hugs, kind words and unexpected “going-out-of-their-way” little extras from those around me that made a huge difference and left a lasting impression on me.

Now, as I gradually wind my way through survivorship, memories of those acts smooth over the physical and emotional pain associated with cancer. Those soothing feelings are too powerful to keep to myself. Given the general vibe in the world today, the hyperpolarization of people’s opinions and the resistance to leaning over and trying to empathize with others, we need more kindness everywhere.

“But what if the person doesn’t deserve it?”

Then that is a person truly in need of it.

There is no limit on how many smiles you can dispense, doors you can open and kind deeds you can do. It doesn’t have to cost anything. And if there’s one thing that I’ve found, it’s that random acts of kindness have a two-fold benefit: for the person receiving the kindness and for the person giving it. It’s the ultimate win-win.

There are only so many hours left in this day of kindness. Take advantage of them. And then make every day a “Random Acts of Kindness” Day.

Scanxiety

Yes, “scanxiety” is a thing. And I’m already regretting writing about it because it’s bringing home the fact that in a week and a half I have a mammogram coming up. It’ll be the first one since completely finishing my treatment almost a year ago.

You can google the definition of scanxiety, but any cancer survivor can offer their version. Mine is the unease that increases as I get closer to THE scan, the one that will pronounce me cancer-free for another year. Mercifully, I will have an unusually busy week at work which will keep my mind equally busy, and the rest I will have to power through with mindfulness and focus.

The unsettling thing about this is that for a short while, it’s a Schroedinger’s cat kind of situation. Around scan time, I am simultaneously a cancer patient and a cancer survivor. Prepare for the worst, hope for the best. It’s altogether unsatisfying.

This mammogram opens the door to the potential of letting cancer back into my life. And I am so.done.with.it. that having to consider what would happen if I had to go through treatment again evokes feelings of hopelessness and frustration. I don’t want to re-experience the steep let down that came with my initial diagnosis, after trying to reason myself into optimism.

Sometimes I play games with myself. Things like, “If I make it to the intersection before the light turns yellow, I don’t have cancer.” This is ridiculous, of course, but I can guarantee you that if I DON’T make it before the light turns, I’m going to be yelling, “Two out of three!”

Scanxiety differs from most life stressors, like a horrible job situation. I’ve had tough jobs with miserable bosses before. I also had the option of quitting. But I can’t say, “Screw this, I’m going to a different universe with better benefits.” I’m here and stuck living out some potentially nasty stuff, and possibly not making it through. That is simply reality and I have to be comfortable with it.

I struggle with the uncertainty that arrives hand-in-hand with scanxiety. Mindfulness teaches us to release expectations, and that is exactly what I’m trying to do. For me, the next week and a half will be a proving ground for how far I’ve come in my mindfulness practice. Perhaps looking at it as a challenge will put a neutral spin on the process of waiting.

No expectations means no anxiety, no let-downs, no shattered hopes and no “dying a thousand deaths” before I’ve even made it to the radiology department. I am not good at this, but I am light-years ahead of where I was two years ago, and I’m going to have to be content in that for the time being.

A Final Word On Risk Factors

Okay, maybe this post’s title is a lie, since I keep bringing this topic up. But I admit that I need to stop whining about getting breast cancer when I didn’t have risk factors, so I’m officially giving myself one last time to vent. And then it’s time to let it go.

First, what is a risk factor? The NIH National Cancer Institute dictionary defines a risk factor as “something that increases the chance of developing a disease”. However, that does not mean that it’s necessarily a cause of that disease. And that’s where the potential confusion (and in my case, irritation) arises.

While breast cancer has a number of risk factors, none of them are 100%-for-sure causal in nature. Even having the BRCA gene does not guarantee that you’ll get breast cancer, although your risk is quite high.

So why does this matter? Turn this around and look at someone with breast cancer. Based on risk factors, you’d expect them to be overweight, sedentary, a smoker, a drinker, an unhealthy eater…and you might be completely wrong. Ascribing unhealthy behaviors to an individual just because they are a cancer patient is potentially stigmatizing (it suggests that they are responsible for bringing on their disease) and ignores the fact that we still don’t know why cancer develops. And what of all those making poor health choices who do not get cancer?

Engaging in the opposite behaviors — being a lean, active, non-smoker, non-drinker with a plant-based diet — likewise is not guaranteed to protect you from breast cancer. And yet, that’s exactly the feeling you get from reading all the recommendations, which leads to a potentially dangerous false sense of security.

Risk factor, schmisk factor! Putting in the effort to live as healthfully as possible is well worth it, no matter what.

Certainly, no matter what disease you have, the more healthy behaviors you engage in, the better your outcome. However, even being a paragon of healthy living is not the “get out of cancer jail free” card that we are led to believe it is. So get yourself checked out and don’t take your health for granted!

What brought all of this up? At a recent gathering, I had an interesting conversation with another former cancer patient who also happens to be a medical psychologist. She felt as frustrated as I did about the way cancer risk factors are presented, so I felt a vindication of sorts. We both agreed that it is critical to highlight the difference between cancer risk factors and causes. And of course, no matter what your perceived cancer risk, to live as healthfully as possible.

Now that I’ve gotten that off my chest, I will do my best to shut up and move on.

1975-2019

Unbeknownst to me, the friend whom I wrote about in “Waiting To Say Goodbye” had already passed by the time I posted last Saturday. The end came very rapidly but peacefully Friday at sundown, allowing just enough time to enable her to be surrounded by everyone in her immediate family.

This is sudden and painful. She and I had spent a good chunk of 2017 sharing breast cancer treatment experiences. We knew that there were no guarantees with cancer, but we both had hope. Neither one of us imagined that this would be one of the outcomes.

After she knew her cancer had spread, she continued living as she always had, toughing through the hard parts. She didn’t want people asking her how she was feeling, she wanted to keep on going until she couldn’t go anymore, and that’s what she did. Her decline was so swift that she had felt well enough to do everything normally until the last few days before her passing. That was a beautiful gift that she genuinely deserved.

Understanding that nothing in this life is permanent doesn’t make her death any easier to accept, although it does underscore how things change no matter how desperately we cling to them. I strive to practice non-attachment, but who am I kidding? I am too attached to people and expectations. Yes, it does cause suffering, but right now suffering is just what I do.

Eventually I may transcend this. Eventually.

I end this post with a quote from Claire Wineland, the 21-year-old cystic fibrosis activist who passed away from complications from lung transplant surgery on September 2, 2018. She had spent most of her days knowing that her time on this Earth was short and urged people to live life to the fullest: “Go enjoy it, ’cause there are people fighting like hell for it.”

Waiting To Say Goodbye

One of the inevitable parts of being a cancer patient is that you get to know other patients. Equally inevitable, however, is the fact that not everyone has a positive outcome. This week, one of my friends with whom I went through my cancer journey entered into hospice.

We had received our breast cancer diagnoses within several months of each other and occasionally met for coffee as we discussed our treatments. It was a safe conversation, as we were sharing similar experiences with similar fears that only someone in the same situation would “get”. We both enjoyed these opportunities to compare notes and allay anxieties. I had been publicly open about my cancer, but she was more private and circumspect about whom she told, so I was one of the few people who knew her condition.

But as our treatments came to a close, our paths began to diverge. My cancer treatment had been more straightforward because the drugs I was given were well-targeted to my type of tumor. Hers was a more complex situation – a more aggressive tumor with no clear targets, complicated by an existing chronic health condition. While I was declared cancer-free, diagnostic scans found “spots” in other parts of her body, tiny ones that had caused suspicion early on but had been too small to biopsy.

These sports grew larger and a biopsy confirmed her fears. Her cancer had spread. Due to her other health issue, she had not been able to tolerate the most prescribed and effective chemotherapy given to patients with her type of cancer tumor. Therefore, her best option was not available. Immunotherapy was attempted but that failed to produce positive results.

At this point, I was hearing about her disease progression second-hand as she wasn’t open to having coffee. I respect her reluctance to meet with me, because if the tables were turned, I don’t think I would have wanted to be discussing my worsening situation with someone who had been in a more fortunate position. Consider this analogy: you’re on a highway. The cars all drive at similar speeds and travel is pleasant. But if you need to pull over — perhaps there is car trouble — you suddenly feel like the world is passing you by. Every whoosh of an automobile is a reminder that you are not moving. You feel frustratingly stuck and left behind, wondering whether you’ll be able to re-join everyone else on the road again.

Her decline has come abruptly. She’d been living on her own all along, but then came dizziness and aches and pains. It started at the beginning of this past week. By Wednesday, her parents were setting up hospice in their home and had ‘round-the-clock care secured. So fast, so fast. It feels like we need to catch our breaths. No one is prepared for this.

I was told yesterday that she had only days left. I am in shock. I had originally planned to bring over bright gerbera daisies this morning, but decided against it, as she is not able to take visitors.

It’s raining hard today and for the next several days. The weather is uncharacteristically gloomy and foreboding for this part of the country. When she passes, I pray that her transition is gentle and the sun is shining.