After reading about the tragic passing of actor Chadwick Boseman at age 43 from colon cancer, in addition to his nothing-short-of-heroic efforts to persevere with his career and charitable acts while facing cancer treatment and a worsening prognosis, I was moved with emotion. First, for the loss of an immensely talented actor who would have had a long and bright future. Second, because knowing how society looks at cancer sufferers, he would not have gotten the roles he did had he been open about his diagnosis.
And, third, for the rest of us run-of-the-mill cancer patients. When I was going through treatment, I wasn’t a hero. I was scared. I didn’t keep my illness a secret so that I wouldn’t be viewed as “uncastable” like Mr. Boseman might have been, or so I would be unhindered in my drive to achieve great things, as other notable cancer patients have. At least the ones who are written about in the media.
Me? I was barely holding on.
Everyone knew about my diagnosis, especially those who saw me on a daily basis. I didn’t want people to speculate about my condition once I started losing my hair and missing work, so I made sure to get the word out. But the real battle I fought was much more personal and invisible. My nemesis was anxiety, and I entered that fight ill-equipped to win it.
So while I was dragging myself around to doctors’ appointments and cancer treatments, I was churning inside. There were days I wanted to numb out and curl up in a corner. But I went to the office. I smiled at coworkers even when I was nauseated by anxiety. That’s it. No great feats, nothing that others could remark favorably on or report in the news. I didn’t feel strong or brave and certainly not like a hero. I simply existed.
It would have been so cool was to have bravely fought cancer while still racking up amazing accomplishments. To be the one about whom people would say, “And she did ALL THAT while undergoing treatment!” No, not me. Not everyone is in a position to be that superhero.
So the point I want to make is that you will hear of the cancer patients who are truly inspirational, and I, along with everyone else, am awed by their strength of character and ability to continue in the face of a life-threatening illness. But there are also many of us that limp along day by day, trying to keep our lives together after they’ve been torn asunder by a cancer diagnosis. We’re not going to get accolades for making it back to work after five days of nausea. But we persevere in our own inconspicuous ways. Perhaps you’re one of those.
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.
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.
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.
I feel that I need to revisit the whole letrozole thingie, just to be fair.
In my last post I expressed my frustration with the continued side effects of the estrogen-supressing aromatase inhibitors designed to reduce the risk of cancer recurrence. Cancer survivors face a considerable amount of pressure from our oncologists to stay on these medications, but everyone agrees that their use does not come without health risks or hits to one’s quality of life. The latter is a squishy concept that is not easily quantifiable.
Deciding whether to take medications for the length of time prescribed, or stop them early, comes down to an individual’s tolerance of both the side effects and risk.
So after all the complaining in my last post, the big question I have in front of me is that, given that I’m already postmenopausal — regardless of the fact that it was the medication that pushed me into menopause — if I were to stop letrozole, would I experience a significant improvement of my complaints? And if I could reverse the side effects how long would it take? None of that is clear.
Granted, there remains additional risk in taking an aromatase inhibitor, particularly long-term, as the cessation of estrogen production contributes to aging and age-related maladies, including heart issues, bone loss and broken bones. And certainly, there is gradual collagen and hair loss, not to mention suppression of the libido.
But if we ignore that for now, I have to admit that not all days are as bad as how I described them. I don’t lie in bed staring at the ceiling while every single side effect hits me all at once. I experience them here and there. And most of them are tolerable.
My fear is about the future. If I’m feeling this now, what will it be like in another six months or a year? What if things go downhill gradually and I don’t realize it until later when I’ve slid so far down that nothing is salvageable. That’s completely ignoring the realities of the “now” for the imagined troubles of tomorrow. That is not being mindful!
But unfortunately, with medications such as these, the future is a factor that must be taken into account, and with that comes anxiety. Of course, anxiety always makes things worse. For me, it’s one of the most difficult side effects of cancer, because it magnifies all the negatives, both real and imagined.
I realized after I submitted the last post, after I complained about all the things I was experiencing, that not everything was as horrible as I thought. Things are not “normal”, and the situation is still applying a frustrating pressure on my quality of life. But maybe, for now, can I hold on and get the most out of the benefits of letrozole, and then re-evaluate tomorrow?
There are few things more terrifying than the unknown.
I experienced this with my cancer diagnosis, although it would be the same with any catastrophe that significantly alters your life, such as losing a job when you’re already financially strapped. You’re hit with the news and then…everything stops. It doesn’t matter who else is talking or what other information is relayed, because the gravity of the situation stops up your ears and you hear nothing else.
A powerfully negative event throws up a wall that you cannot see around. When the future is undefined, it can take any form. This is a positive and liberating concept when you’re embarking on a new venture — “the sky’s the limit!” But in the case of something that’s painfully life-changing, our minds race to frightening prospects, often culminating in a terrifying extreme that we can’t see our way out of.
This is where you pause and breathe. Get your facts together and see what your options are. Things get easier when the darkness in front of you parts and you see a path to follow. After my cancer diagnosis, it was when I met with the oncologist who explained the possible variations of my condition, what the treatments would be for each, and yes, even what the potential outcomes were.
Sitting there, digesting the information, I finally felt like I had something to hold on to. If the diagnosis was a hulking monolith, smooth and slippery, blocking my way, my doctor’s words gave me handholds with which to climb.
Right then, the future looked more manageable. I still desperately wished that it had been different, but I saw the path through the ordeal and it gave me something to follow as I strode forward.
April 27, 2017 was a Thursday. It was also the day of my first chemo infusion. If you’ve ever gone through chemotherapy, you’ve sat through the full disclosure of all potential side effects. There’s so much that it can be disorienting.
But on that Thursday when my husband and I went to the infusion room, I learned that there was a process. Everything doesn’t hit you at once, you take it in steps as you make your way down the path.
I’m still walking. But at least I’m still walking.
With everything that’s going on right now, it would not be surprising if you were having trouble sleeping.
I myself have an internal alarm that wakes me up around 3am, giving frightening thoughts a chance to land hard punches. It’s far easier to keep negative emotions at bay during the daylight hours, but our defenses are down when we’re groggy. Before I know it, I’m already on that hamster wheel, getting nowhere and working up an anxious sweat in the process.
There’s a lot to worry about in the time of COVID-19. Take your pick of stressors: finances, physical health, relationships, emotions. At night, our brain wants to fix everything that we’re hit with during the day, but obviously, that’s not the time for it. Few things are as critical for dealing with stress as a good night’s sleep, which you won’t get if you’re trying to calculate how many months’-worth of rent you have left.
The mistake we make is trying to let go of things completely. When “danger is imminent”, as in, the worst-case scenario is a distinct possibility, it’s unrealistic to pretend it’s not. I promise you, as a former cancer patient, I had terrors breathing down my neck. I could not simply “let go” of them. They were life-changing and oh-so real. But with a little effort I could loosen their grip on me.
Your concerns need some respect. So instead of trying to avoid them, try gently putting them aside. You know they’re still there, they know they’re still there, but you’re not butting heads. This may take some mental calisthenics.
Ask yourself, “Can I do anything productive right now?” If the answer is no (hint: unless the house is on fire or there’s a tiger loose in your bedroom, the answer is no), then create a mental shelf for your anxious thoughts. You can build one for yourself, right there lying in bed, no hammering required.
Find yourself a jar with a secure lid. I know you have one somewhere in your mind. Scoop your thoughts in there, screw the lid on tightly and place the imaginary jar on that imaginary shelf. This may take several tries — unpleasant thoughts are slippery — but that’s okay. Make sure the shelf is across the room from you. The jar will still be there in the morning when you wake, thoughts swirling inside. But in the darkness, you’ll have some space between them and yourself.
As you lie in your bed, take a deep breath, feel the weight of your body on your mattress, feel the softness of your sheets on your skin. Look at the shelf, way over there. Way, way over there, and you safe in your bed. Allow yourself to relax.
That’s what you need most in the wee hours of the morning. So rest easy now. Tackle the problems tomorrow.
If there were ever a time to open yourself up to being more mindful, it’s in the midst of a global pandemic. We are in foreign territory, in an unsettled state where we’ve lost our footing. Mindfulness can help us find a path through this.
Being mindful is critical now that we’ve got to remain more aware of how we move through space.
There are things that we do automatically. Consider how often you touch your face. Don’t do that! It’s important to notice where your hands are. Are you wearing a face mask? Don’t touch the front of it. When you inhale, you’re creating suction around the mouth and nose, and if you’ve come into contact with viruses, it is more likely that the cloth covering those areas will be contaminated. Remove the mask only using the ties on the back of your head or elastics around your ears.
Going to the store? Be aware of which hand you’re using to do what, even if you’re wearing gloves. Touching door knobs or packages with one hand? Use the other to get your wallet out of your pocket or purse.
What hand are you holding your phone with? Which finger are you touching the screen with? The COVID-19 situation necessitates a focus on what you’re doing. Take a deep breath…and then disinfect everything when you get home.
Living mindfully, in the present, helps us let go of fears surrounding what may happen, and in the midst of unprecedented uncertainty when , most of us have those thoughts. But you don’t have to let them take you over.
Stay grounded in the moment. No one knows exactly what the future will bring, but the possibilities can be scary. Right now, however, you are safe. Feel what part of your body is in contact with the seat or floor. Come down from the frightening thoughts and listen to your breaths. Those imaginings of the future are not happening now. At this moment you are standing or sitting, breathing. Feel into your hands and feet. Can you feel the blood pulsing through them? Feel yourself being supported by the earth. Breathe.
If you don’t yet meditate, this is a chance to start, and it’s a habit that will benefit you for years to come. The good news is that you don’t have to get it “right” the first time. In fact, there is no “right”. There is just consistent practice.
What does meditation look like for you? It doesn’t have to be sitting in lotus position and chanting mantras. There are other ways to meditate. Stay in the moment. Keep your attention on your breath, noticing the quality of the inhales and exhales. When your mind wanders, as soon as you notice your loss of focus, bring yourself back to the breath. Resist jumping down rabbit holes of tempting thoughts. Just stay with your breath. That’s all.
If you need to bring yourself down to a more peaceful state, you can try a more structured breathing technique, such as the 4-7-8 “relaxing breath” espoused by Dr. Andrew Weil: inhale for 4 counts, hold for 7, exhale for 8. It is more important to maintain that ratio rather than to have a count last for a specific amount of time. Do several cycles of this, then return to natural breaths.
Does this feel too forced for you? Your meditation might be listening to a complex piece of music — truly listening to how the instruments blend together, gliding through the different layers of sound — and feeling into the sensations that it invokes in your body.
Perhaps it’s looking at nature through a window, holding a cup of warm tea, immersing yourself in the subtleties and complexities of the world.
Or constructing a jigsaw puzzle, diligently looking for pieces to match a color or pattern. Focusing on the satisfying click when they snap into place. Apparently, this is a stress reducer for many, many people, given how quickly puzzles disappeared from Amazon!
Find your own meditation. Let go of what you think it “should” be and focus on what works for you. There will not be a quiz.
Calm Stress Eating
For those prone to emotional or stress eating, a stay-at-home order can result in weight gain. This is the time to practice awareness of what goes in your mouth. Do you respect yourself with nutritious food or treat your body carelessly? Are you truly hungry or do you eat out of habit or boredom? Are mealtimes a mechanical process for you?
Allow yourself the opportunity to halt other distractions and focus on what you’re eating. In a busy household, this can be difficult, but as with all mindful things, there is no “perfection”. There is simply practice: doing, and doing again.
Look at your food. Savor the aromas. Listen to yourself chew. Taste the flavors. Feel the textures. Close your eyes. Slow everything down. See if you can sense when your hunger has subsided, instead of stopping simply when you’ve eaten everything on your plate.
Create a Calming Space
Now that we’re sheltering in place, it’s not as easy to overlook cluttered spaces. Living in the midst of disorder can be very stressful, but trying to balance remote work and childcare, or beating back concerns about no longer having a job, while trying to maintain a cleaning routine is also anxiety-provoking. There is nothing normal about the situation we are in, so allow yourself the latitude to prioritize.
Mindfulness takes the drudgery out of cleaning. Stop and look. Breathe. Decide what you can take on and then go for it. Focus on one spot and stay present as you work on it. Set a timer for ten or fifteen or thirty minutes and see what you can get done within that time. I guarantee you that you will find yourself in a better place than if you hadn’t done anything at all.
This is not a punishment. It’s an opportunity to create a positive environment in which to ride out the pandemic. I spent Easter Sunday bleaching my kitchen, which seems so antithetical to what we expect to do on a holiday. But for me it was a gift, being present and scrubbing counters and appliances bit by bit, no expectations. Yes, there are still many loose papers on the dining room table, but when I enter the kitchen, I breathe a sigh.
I could say, “it’s not enough,” but you know what? It is more than enough. It’s a semblance of order in a situation that felt out of control, just as the COVID-19 situation is out of our control. We all need some grounding, and I promise you, a clean, uncluttered room lowers stress levels. When I went into the kitchen to get coffee this morning, I thought I was in heaven.
This sense of calm is still with me, even as my son has decided to bake cookies…
By now, I’m hopeful that we all understand the importance of putting physical space between ourselves and those outside of our household in order to avoid transmission of the coronavirus. According to the BBC and its broom trick, you should be able to hold out a broom and not be able to twack another person with it. That means about six feet of distance, as everyone’s been repeating.
But socially distancing ourselves in this time of uncertainty is the last thing we need. In fact, we need to be reaching out to others, trying to bridge the social isolation gap.
It should be easy enough to strengthen our social ties with all the technology that we have available, like Zoom meetings and FaceTime sessions. But all those require at least a little planning, especially when we’re living in comfy clothes, forgoing haircuts and not necessarily getting made up to go out. What we’re missing are all those little interactions that we have in our daily lives: impromptu water cooler conversations, brief chats with a cashier, a quick joke with the server who brings your lunch. There are many ways that we touch each other’s lives than we’re likely conscious of, and those have abruptly stopped.
So if you’re feeling a strange emptiness in your life, there’s a good reason for it.
Now, consider that people are being isolated at a time when many are losing their jobs, worrying about being able to pay their bills, fearing for their health and wondering when all of this is going end. The financial and health concerns are immediate and frightening, but it’s the unknown extent of the damage that continues to keep people up at night.
This is the time when we should be reaching out to our friends and family members, checking in with loved ones and re-establishing our social connections. While “we’re all in this together” might seem like a hackneyed slogan, it is a perfect description of this new reality. As distant as we might feel, particularly those who are forced to shelter-in-place alone, we are experiencing a global pandemic. Never in my own life have I been able to share in such collective concerns, ones that are literally reverberating throughout this entire planet.
This should be something that ties us together. So as you do your best to be safe and keep your distance for the sake of health, please don’t forget to bridge the social and emotional distance that this unique situation has bought upon us.
There’s more to the story I began in Part 1 and what better time than the start of a new decade to relate it?
I have a monkey. Those of you aware of your monkey minds know exactly what I mean.
But at this moment, “I have a monkey” means something more tangible. After giving it some thought, after going through struggle after exhausting struggle over all the negative chatter in my head, it was clear that I needed to change my strategy.
A quick Amazon search provided the result I needed: a gloriously soft, appropriately small, unbelievably cute plush monkey that would serve as my previously-maligned nemesis. It is a physical representation of my MonkeyMind (my little MoMi), but not one that I’d want to stay away from. This one begs for soft cuddles.
(To be clear, I bought a stuffed toy from the Amazon site, not an actual primate from the Amazon!)
How can something so darling be a nemesis? It shouldn’t be.
This is not about avoiding thoughts or wrestling my mind into submission, which I’d been trying to do. This is about acceptance of something that is a part of me.
Instead of tossing and turning at night, instead of succumbing to anxiety, instead of frantically trying not-to-think about what’s bothering me, I take that comfy manifestation of my worries and shower it with affection. I hold it gently, and then I hold my thoughts gently too.
The best part of this is that MoMi, a representation of that which upsets me, is actually so easy to hold and love.
What does my MonkeyMind need? The same thing this world needs a lot more of: LOVE.
Not gonna lie, I really did not want to go on yet another medication, but for this appointment, I left all the journal articles at home and put away the boxing gloves. I promised my oncologist that I would stay off the forums, stay off PubMed, quit overthinking things and give letrozole a chance.
The reason? My oncologist thinks that my earlier frustration with tamoxifen was, to put it bluntly, in my head. And my clinical counselor suggested that what I complained of could be explained by anxiety. But I swore that my memory and focus issues started with tamoxifen.
You know what? I’m not so sure now.
The fact is, everything that I was experiencing could have been caused by anxiety (or menopause). And even more striking were the things that I didn’t experience. Not only did I not have significant hot flashes (maybe a “warm flush” here or there, easily countered by taking off a sweater), I never had night sweats. Heck, I had more night sweats before my cancer.
No weight gain, either, which had been another big concern of mine. I’ve been disciplined in maintaining healthy fitness habits throughout my adult life, probably to the point that most people wouldn’t tolerate. Tamoxifen didn’t manage to mess with that, which was extremely gratifying.
While I really want to peg the concentration problems, distractability, flagging libido and other negatives on estrogen-blockers, a retrospective look at my emotional history suggests that (1) I’m highly suggestible (I need to stay off the internet!), (2) there have been loads of anxiety-amplifying events in my life, even before cancer, that I haven’t handled well, and (3) I would be better off shutting up, taking the pill and working on getting my mental state in order.
I mean, I already knew most of this. But some things need to hit me between the eyes a number of times before they actually register.
So, while my oncologist warned me about “a little joint pain” (eek!), I’ve avoided anything but a cursory glance at what I might experience on letrozole, besides what reactions would necessitate calling the doctors.
We’ll see how bad these side effects really are.
A FINAL NOTE – According to what was written on the bottle, this stuff can cause dizziness and impair my ability to operate a vehicle. Seriously? I didn’t expect that, but here’s what I’m going to do with that tidbit of information: I’m going to view letrozole as a reason to get to bed earlier, since I’ll obviously have to take it in the evening. And I’m going to tell myself that this is going to help me sleep. Who knows, maybe it will?
This weekend would have marked two years of taking tamoxifen, the estradiol-blocking medication that is supposed to keep my hormone-positive breast cancer from recurring.
As it turns out, there will be no such commemoration. Several weeks ago, I started noticing a funny cramping feeling in the general area of my uterus. It was light and under any other circumstances, I would have ignored it, but use of tamoxifen is associated with an increased risk of endometrial/uterine cancer, so it kept me on edge.
It’s worth noting that the increased risk is actually for postmenopausal women, and to the best of my knowledge, I was not yet postmenopausal. That’s why pre- and perimenopausal women are started on tamoxifen but taken off of it as soon as they go through menopause. Still the sensation, although intermittent, didn’t go away.
I finally called my oncologist. As it was, I was wary of tamoxifen – I already blamed it for a number of other negative things that I experienced: fatigue, hair thinning, low libido, cognitive issues, mood swings, general misery…all of those and more were listed as possible side effects.
I complained about the light cramping to an oncological nurse, who was surprised that I didn’t have a recent pap smear on record, because according to her, the oncologist wanted me to have one yearly. Mind you, pap smears are for cervical cancer, and I wasn’t at an increased risk for that. But whatever. The nurse gave me her blessing to stay off tamoxifen until I next saw the oncologist.
Conveniently, my oncologist appointment was in three days.
I was stressed, because if there’s one thing that being a cancer survivor made me good at, it was stressing. So much so, that my blood pressure hit 165/95 at my appointment. I couldn’t get over how ridiculous that was and how my thoughts had generated that sort of a reaction. I don’t think my pressure was even that high before my cancer surgery, at a time when my anxiety was raging and everything felt out of control.
I had a prolonged discussion (negotiation?) with my oncologist. In the end, we decided the following: I could take a month off tamoxifen and meet with him again in six weeks. In the meantime, I would go to my gynecologist to rule out endometrial cancer. (Incidentally, a week later at the gynecologist’s office my blood pressure was back down to a very reasonable 102/64.)
My oncologist and my clinical counselor (who I discovered had spoken to him about me) thought that some of the worst side effects that I was experiencing were not due to tamoxifen, but anxiety. My onc suggested that if nothing improved after a month off tamoxifen, I should consider anti-anxiety meds.
But he also checked my hormone levels to see where I was in my journey into menopause. A few days later, I got the news: I was officially postmenopausal and was told to not restart tamoxifen.
So, okay, no more tamoxifen. I was also quite happy that I managed to transition through menopause without any significant hot flashes. The downside of this was, however, that I would be put on an aromatase inhibitor, which came with its own set of side effects, not the least of which was significant bone pain and bone density loss.
Or at least those were some of the effects that I remembered from the last time that I read about them, which was a while ago. This time, I’ve decided, I won’t go back and research all the negatives of the medication. Anxiety does hit me hard, I have to admit, and I want to be sure that I’m really experiencing what I’m experiencing and not simply being influenced by what I’ve read.
So I’ll give the new medication a fair shake and give myself a break by not getting worked up by what *might* happen. As the gynecologist said, looking over my bloodwork, “Actually, you’re really healthy, except for having had breast cancer.” I’m going to go with that and see where it takes me.