After My Last Oncologist Visit, I Fell Off A Cliff

I had an oncologist appointment last Thursday that marked four years of being done with chemo for breast cancer.

During my previous onc visit in February, I had been a mess: depressed, stressed and miserable with joint pain and a feeling that my endocrine therapy was taking away from me more than it was giving me. At that point, he let me stop the aromatase inhibitors.

Now, half a year later, I felt so different. My blood pressure was 118/83, much lower than the 130s and 140s systolic numbers I was hitting after stepping into the exam room on previous visits. I was peaceful and more hopeful.

We discussed all sorts of “survivor” things. The joint pain had mostly resolved itself and was no longer a hindrance to exercise, one of the things most important to me. My libido could have been higher and my short-term memory was often lacking, but he felt that could also be attributable to working and sleeping in the same room for the past year and a half, coupled with menopause.

Finally, my doctor noted that it was time for another chest MRI. Not the most comfortable of scans, but I’d done it once, I could do it again.

I would love a pet, even if it means having to clean fur out of my keyboard.

It was not until around noon of the next day that I suddenly plunged off a cliff. I was talking to my daughter and randomly mentioned my willingness to look after any pets she might have in the future when she’s living on her own, were she to travel for work, because where we lived now we weren’t allowed to have pets…

…and I was slammed by a massive wave of sadness and regret.

My thoughts zoomed back to my first chest MRI, stripped to the waist, lying on my belly, arms stretched over my head, frightened and painfully vulnerable. All my focus was on breast cancer and what other horrible realities the MRI would reveal. All I could think of was surviving my upcoming treatments.

That MRI meant that my life was on hold. There would be no progress in my career for the foreseeable future, and no chance of moving into a bigger place, one that would allow us to get a cat (note: I’m a dog person, but I would have been happy with a cat!). Animals have always been a part of my life, but our apartment rules prohibited them. I yearned for the chance to have a pet again. It seemed such a small thing to ask, but even that wasn’t available to us now.

That brief discussion with my daughter underscored a profound feeling of loss and despair. Cancer had robbed me of a lot of things in my life that others took for granted.

This was my view before I realized I didn’t have to sit there.

And as I sat there in the depths, I forgot that time does not stand still, things are always changing, nothing is permanent…and I have inside me everything I need to climb out.

Curiously enough, I had recently attended a talk on managing anxiety aimed at cancer patients and survivors. The counselor who presented the information was herself a breast cancer survivor and she told us a story of doing a follow-up chest MRI, which she found very stressful. Afterwards, she was asked by one of the cancer nurses what sorts of mental tools she had used while in the MRI tube to calm herself down. At that point, she realized that even though she taught these techniques to her patients on a daily basis, she had completely forgotten to use them herself!

I had been sitting in the darkness for a few minutes when I remembered her story. Most importantly, I remembered that I didn’t have to feel this way, that it served no practical purpose and that I wanted be happier. The only reason I felt like this was because these emotional plunges had been a habit of mine.

So I twisted a rope out of all those grounding techiques that I’ve posted about and pulled myself up.

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True, I still didn’t have a cat. But I was able to take a deep breath and realize that at least I had a future. And that future might contain a cat.

Re-writing Your Life

When I look back at the past decades, I feel exhaustion sweep over me.

Negative events may seem like they’re never-ending.

Cancer was not the only negative thing to come up in my life. There have been quite a few horrible things that have taken place, and at times I get overwhelmed by the thought of them.

This is not where, at my age, I thought I would be, and that’s disappointing.

But I realized that part of this disappointment is the lens through which I view things. Granted, I’ve had my share of misfortune, but when my life seems to be sinking into bleakness, it’s time to do something about it.

This calls for a change in perspective.

So I have undertaken a project. I am writing out the story of my life, but with a slightly different bent: when I come across a negative event, I pause and consider whether I can find something in it to be grateful for. I write about how I overcame it, rather than how bad it was, or how unfair and so unlike what others have had to deal with. I place emphasis on the outcome to avoid getting mired in anguish.

A difficult person in my life? I’ve learned that I’m not responsible for their happinesss, only for my own. A disastrous financial situation? I’ve found that what I perceived as a terrifying outcome can be overcome, and there is a light on the other end and a path by which to maneuver through it. A frightening health crisis? I now know I have met head-on the most daunting disease I ever feared that I would have and somehow made it through treatment.

Re-framing your personal history, when you’re ready to do so, can open you up to a glorious new view of how powerful you are and what amazing things you have achieved in your life.

I am still here. Re-framing the bad stuff is work in progress and it’s not always easy to let go of my familiar, well-worn, negative narrative, but, yes, I am still here.

I’ve discovered that my life is a story of perseverence. There have been numerous hardships and it’s true they’ve left deep scars, but I am aware of how they may twist my attitude, which has removed some of their negative punch. While I may look around and wonder why things have gone a certain way, I also see what I’ve learned and how I’ve matured.

If you want to give this a try yourself, there are a few things to keep in mind:
This is something for you to undertake about your life, not to be forced into by another person, nor push someone else into.

This is not about looking through rose-colored glasses or feeling that your concerns are not taken seriously, nor is this a squelching of negative emotions instead of dealing with them. It’s a step to the side for a different view. This doesn’t mean that those events were not disastrous or those who perpetrated bad things don’t deserve punishment.

You have a right to be upset. You are heard.

Re-framing your life in this way means that you give evidence to the exquisite being that you are, and to the power that you have within yourself. If you feel as though you’ve been chewed up and spat out, be gentle and start slowly.

When you’re ready, invite healing by releasing the burden of negativity and, pen in hand, allow yourself to reveal your strengths.

(Almost) Six Months on Letrozole

WARNING: IF YOU ARE STARTING ON AN AROMATASE INHIBITOR, I highly recommend that you not read this and instead give yourself the chance to gauge the medication’s effects without being influenced by someone else’s experiences. Note that I started letrozole just out of menopause, so my side effects from this drug have been more dramatic than they might be for a women who’s been postmenopausal for longer.

First a bit about aromatase inhibitors: according to breastcancer.org, “Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.” Think of this as starving a hormone-positive cancer of its food.

Aromatase inhibitors have been shown to be more effective than tamoxifen, with fewer serious side effects, although they are certainly not risk-free as they can cause “more heart problems, more bone loss (osteoporosis), and more broken bones than tamoxifen.” (breastcancer.org)

When it was time to start letrozole, I took a different tack than when I began tamoxifen. For the latter drug, I did all the research I could, researching relevant studies, digging into possible side effects and visiting lots of forums to learn about what other women were experiencing.

I wish I hadn’t. I think all the negatives affected my perception and made me anxious about taking the medication.

The letrozole pill looks so teeny and cute – how bad could the side effects be?

So after two years of tamoxifen, when my hormone levels suggested that I was postmenopausal and it was time to switch to an aromatase inhibitor, I stayed away from clinical literature about letrozole. I decided to give it a chance, since my oncologist felt that I had confused the effects of anxiety about taking tamoxifen with the actual effects of tamoxifen.

Okay, then. As I was leaving my oncologist’s office, letrozole prescription in hand, he added that some women complain of “joint pain”. I think he felt it was his duty to warn me.

My experience? I’m finding it harder to recover from workouts. I train with free weights and am a rower (currently, indoor) and the change in my resilience and stamina is striking. In 2018, a year after finishing up chemo, I was able to power through tough workouts and felt like I’d gotten most of my pre-cancer strength back.

Fast-forward to now, just two years later, I feel old. My joints are creakier and I’m having increased muscle pain and overall stiffness. I’m experiencing bone pain in the leg that I broke skateboarding when I was 12. Yeah, I push through workouts, but they’re taking their toll on me.

I’m fortunate to have a full complement of gym equipment at home, so the COVID-19 lockdown didn’t hinder my workouts. To get some fresh air, I incorporated more hiking into my routine, in addition to my regular workouts.

It was too much and left me with hip pain that made it difficult to fall asleep. So I took a rare break from vigorous workouts and for two weeks incorporated more gentle movements and focused on yoga, which I had been doing intermittently.

When I started ramping back up, I didn’t feel rested, I felt weak! Weights that had been easy to lift a couple of weeks before felt challenging. I had to restart the process of building my strength. You could pass it off as simply “age”, but I’m only 54, and the drop in strength and energy has felt precipitous, even demoralizing. While it’s true that I went through menopause during the last two years, it was a medication-induced menopause and I was literally shoved through the change.

Letrozole has been shown to be very effective in preventing cancer recurrence, presumably because it works to keep estrogen levels low. However, most women on letrozole are in their 60s and have been postmenopausal for a number of years. For a woman in her 50s, the aging effect of estrogen suppression has felt dramatic.

My libido dipped even lower than I’d experienced with tamoxifen, something I was warned about by my GP and gynocologist (both females). My male oncologist didn’t talk about it. I believe this is a seriously underreported side effect of aromatase inhibitors and one that many women suffer from in silence, because they don’t feel comfortable bringing it up.

Likewise, I feel my appearance changed. Now, this may simply be my perception of myself, as my post-chemo hair transitioned from super-cool and spikey to thin and limp (and, now, untrimmed!), and my eyebrows never recovered. But it’s not just in my head: A bus driver recently tried to offer me a senior citizen discount, whereas four years ago someone had told me they thought I was in my late 30s! That’s a big difference. The fact that the lack of estrogen is making me look like I’m older than I really am has become distressing:

And that difference is felt in my relationship with my family. There have been times that I’ve looked at my husband (four years my junior) and my high school-aged kids, and I feel like don’t belong with them. I feel like a stranger, an old lady that’s just hanging around. That hurts a lot.

And on my worst days, I feel dark clouds rolling in, bringing with them frustration and hopelessness. Is it letrozole or menopause? Does it even matter? Take a woman, throw her in a bag, tie it to a tree branch and then beat it with a stick. That is how I feel when I have to take a pill that does these things to me. No control, no future, lots of pain. The longer that I continue with medications like this, the more I feel that they are pointless, since I’m starting to not care whether or not the cancer comes back. And that’s the worst side effect of all.

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So, this blog is about being honest about the cancer experience. But it’s also about mindfulness. I have to open the door and let the negative feelings into the room so that I can offer them compassion and a kind ear. I sit with them for a while, and eventually, I feel better.

Invisible Effects: Bring On The Waterworks

While I’m exposing all my post-cancer psychological quirks, I might as well write about this one. Technically, this is not an “invisible effect”, but the emotions are, so I’m taking a little liberty with the title.

I cry. And I mean, like over almost nothing. I choke up over the smallest kind-of emotional thing and in situations where tears are not merited.

While tears are often considered another aspect of the anxiety/depression complex, in this case, my propensity to cry seems to exist in isolation from definite psychological states, which is why it deserves its own post. My emotional highs and lows cross the tear threshold more easily. And it really doesn’t have to be something terribly sad or unbelievably touching…it just has to be a standard deviation or two beyond neutral.

I am much more sensitive than I’ve ever been. Yes, it’s been a rough couple of years since my original diagnosis in early 2017, but right now I feel as if I’m teetering on the edge of exhaustion and have no resistance to an outward demonstration of emotion. The end-of-year holidays are notorious for stirring up deep emotions and feelings of overwhelm, so I’m sure there’s an element of that chipping away at me too. But this didn’t start with Christmas preparations.

Oh look! A puppy playing with toilet paper. *starts bawling*

Who knows what sort of residual effect the chemotherapy has on me? Combine that with any weird hormonal fallout from the Tamoxifen, which is blocking estradiol receptors in my body, and throw in some menopause, which I’m heading towards both pharmaceutically and naturally. I guess tears are to be expected?

I try my hardest to remain mindful of what I’m experiencing and not dissolve into a puddle in public places, but this may be an indication that I’m not doing a great job of “making space” for my emotions. Everything is RIGHT THERE in my face. My buffer is very thin and that doesn’t give me much room for observing my feelings impassionately.

I’ve read that many people feel more emotional even months (years?) after completing cancer treatment. But…really? I am bowled over by how much MORE there is to cancer than the cancer! It seems like the back end of this disease is just as complex as the front.

And I’ve got a load of empty kleenex boxes to prove it.

Invisible Effects: Anxiety

This is tough to write.

One of the reasons this blog is currently anonymous is that there are topics I want to cover without the fear of being judged. As many strides as have been made in dealing with mental health issues, there still remains a stigma associated with things going on in your headspace.

If there’s one thing that cancer did, for better or for worse, is force me to face the fact that I have a problem with anxiety. I’ve often wondered how different my cancer experience would have been, had I been able to go through all of this without the uncontrollable fear. I expect that I would have been less angry, less nauseated, less desperate. I’m sure that other people experience anxiety with their diagnosis too; mine devoured me.

Cool, calm, collected…and so not me.

This deserves a description: if asked to describe myself as a dog breed, I would like to say that I’m a Great Dane or a Mastiff (hopefully less drooly), watching the world coolly, not getting too excited about anything. But that’s not who I am. I’m a Chihuahua — but not a nasty, bitey, snarly guy with a Napoleon complex. I’m one of those pathetic little dogs that just sits there and trembles with a paw raised. I get anxious, and how. But in the past, the bouts of anxiety always passed rather quickly, perhaps in a matter of hours or, at worst, a day or two. My mind would work through it, and that would ease the tension. That’s why I’ve always been able to handle it.

But going through cancer blew that to pieces. When I experience anxiety now, it hits me like a freight train. The effects are immediate: a cold punch to my gut followed by nausea and weakness. When I focus on being mindful and present, I can slow my breathing and heartrate but I cannot get rid of the nausea, so I can’t shed the overall feeling.

This sensation is horrible. Meditation works wonders, but I cannot yet make enough space for my anxiety to be able to step back and observe it. It’s in my face, and that’s terrifying, but not necessarily apparent to those around me. It’s a dirty little secret that has affected my quality of life.

That can be harder to deal with than cancer. And I can’t believe that I let myself write that. But apparently, I’m not the only one who feels that way.¬†Dr.¬†Stephen Ilardi, Associate Professor of Psychology at the University of Kansas with a private practice in Clinical Psychology, teaches a Calm Master Class called “Rethinking Depression” (Calm.com) in which he describes the experience of a former cancer patient who battled Hodgkin’s lymphoma. While undergoing particularly difficult cancer treatment, the patient was visibly ill and suffering but received an enormous amount of support from those around him, and that helped him through the disease.

Several years after he recovered from his cancer, the young man experienced a bout of serious clinical depression, but he didn’t “look sick” the way he had from the lymphoma. As a result few people around him understood the level of psychological pain he endured, and he received little support.

After his depression finally lifted, the patient declared that if he had to chose between once again going through the cancer or experiencing depression, he would take the cancer even though its treatment was pure physical torment. 

That speaks volumes regarding not only the agony of psychological distress but also how critically important it is to take it seriously. Mental health issues deserve more attention, and even though we’ve come a long way in understanding their impact, we need to do better. In the context of cancer, I feel it’s imperative to address the psychological repercussions of the disease, in addition to the life-threatening physical ones.

Which is why I’m writing. I can’t help but think how much worse this would be if I wasn’t actively engaged in coping techniques.