Weighing on My Mind: Not the Scale Again!

Anyone who’s been through cancer knows that the experience is not just about the cancer. The entire journey involves much more, revealing even the little anxieties that had been tucked away in dark corners.

One of those for me was that I was constantly put on scales. EVERY single doctor’s visit, I was weighed. And I hated it.

It’s worth mentioning that I don’t have what most people refer to as a “weight problem”. Unless, that is, you mean being exceptionally diligent that I not put on weight. For me, weight was tied to self-worth, and in my perfectionist view, I was driven by fear of shame to keep my weight down.

At every single (frequent!) oncologist visit: “Step on the scale and I’ll get your weight.”

Ironically, the positive side effect of this was that I became very interested in exercise and healthy eating, and that has served me well. But of course, it took a long while for all of this to shake out into a truly healthy mentality, and particularly in my teens and early 20s, my mindset was not the healthiest.

By my 50s, however, I had a great relationship with my active, healthy lifestyle.

And then I got cancer.

And all of a sudden, hospital scales were all over the place, and even not being overweight, I sweated the weigh-ins. I sweated them when I first went to see my doc about the lump, when my weight started plummeting even before my first chemo infusion (hello, uncontrolled anxiety) and when post-infusion I was retaining water and my weight crept up.

I could write an entire post (or several!) about how, while I religiously weighed myself twice a week at home, I had intentionally put off several doctor’s visits over the years NOT because I was 10-20 pounds over a reasonably healthy weight…but because I was about three pounds higher than I felt I should be. Those three or four pounds would have disappeared on my 5’11” athletic frame, but that was beside the point.

There was an “acceptable” number and I wanted to make sure I was there before heading to the doctor.

The number of cancer visit weigh-ins was staggering. Every.single.time I saw the doctor (which was a lot), I had to hop on the scale. I would purposefully not drink very much water or eat less beforehand. It DID NOT EVEN MATTER that we were dealing with a life threatening illness. I absolutely hated getting weighed in a doctor’s office and I hated what the scale meant to me – that I was somehow never good enough.

Since adopting a spirit of mindfulness, my perfectionism has softened and I no longer abhore the weigh-ins like I used to.

I had internalized that belief.

Gradually, the number of weigh-ins decreased. It was as if a pot that was at full boil slowly simmered down. My mindfulness practice showed me not only that anxiety was not a helpful reaction to a stressful situation, but that the slight weight fluctuations that I obsessed about weren’t apparent to anyone else. Nonetheless, I had taken them to be indicative of yet another way that I felt I had fallen short of the person I “should have” been.

And that helped me understand and begin to deal with those unreasonable and even meaningless expectations I had of myself that were still lurking in the shadows.

So now, when it’s time to go to the doctor, do I fret the scale?

Well, I still feel that twinge because it’s a deeply-ingrained habit, but now I understand where that twinge comes from. And once I get off the scale, I forget about it and go on with my day.

Another Oncology Appointment…and What’s Up With That Smell?

My oncologist appointment last week marked five years since completing my final chemo infusion (and for those of you keeping track, since I had that nasty chemo nail infection).

Lately, my oncological appointments run like this: my onc asks how things are going, I air all my grievances and we spend the rest of the visit agreeing that there’s no way to determine whether what I’m experiencing is chemo-related, menopause-related, or something that I was dealing with before but hadn’t paid attention to back before cancer.

Because there’s nothing like cancer to make you acutely aware of every twinge and creak in your body.

But that’s about it. We are running out of things to talk about. In this context that’s a good thing.

I used to lament “what could have been” had I not gotten cancer, not experienced chemo, not been pushed into menopause chemically and artificially had my estrogen levels squashed. But now, I know better. What happened, happened. And “what could have been” is pointless to ponder because it simply isn’t reality.

It took me a while to get to that place and I’m finally okay with it .

But there was something else different about this oncology visit…

I walked into the cancer center for my appointment and was hit with “the smell”. There is a distinct scent in the building, possibly the cleaning solutions used to disinfect the place or maybe a fragrance that is purposefully pumped in. I had mentioned it to my clinical counselor several years ago and she admitted that a number of people have said the same thing. The smell is familiar, given that after multiple appointments and infusions and radiation sessions, I’ve experienced it a lot and have made many associations with it.

But for some reason, this time it hit me hard and a wave of sensations washed over me. Not sure why my reaction was so strong, but I’d like to think that between my last onc appointment and this one, I’ve made the most progress in distancing myself from the frustrations of getting cancer and have actually moved on with my life.

However, that rush of emotions served as a reminder of everything that I’ve been through over these past five years. I thought that chemo was going to be the hard part. Turns out, it was the most predictable part: six trying infusions, but they came with an end date. The rest of treatment brought uncertainty and unexpected difficulties. I thought I was done after radiation…but the pills continued.

Looking back at this, while I’m technically not “out of the woods” and may never be, these last six months have felt different. Yes, I still have another onc appointment half a year from now, but I’m finally turning my face forward to the future instead of constantly looking back at the past, worried that those frights will catch me again.

Extending Life with Immunotherapy: Advances in Treating Triple-Negative Breast Cancer

The August 9, 2022 edition of the National Cancer Institute’s Cancer Currents blog announced the findings of the clinical trial KEYNOTE-355 that examined the benefits of using the immunotherapy drug pembrolizumab (Keytruda) in conjunction with chemotherapy in treating advanced triple-negative breast cancer (TNBC).

The results, published in the New England Journal of Medicine (Cortes et al., 2022), revealed that pembrolizumab in conjunction with chemotherapy was effective in extending the lives of TNBC patients with advanced disease as compared to chemotherapy alone, and the difference was striking. Those who received the drug lived a median of 23 months compared to 16.1 months for the chemo-only group.

Sources: Cancer.gov, Cancer Currents blog

Of course, cancer differs among patients and not all TNBC tumors are the same. The life-prolonging benefits of pembrolizumab were limited to those patients with PD-L1 scores of at least 10; PD-L1 is an immune checkpoint protein, and the score denotes the level of this protein found in cancer tumor cells.

And it’s important to note that while the drug extended life expectancy, it was not yet a cure, which is what we’re all still waiting for.

So there are asterisks associated with these findings, which might be disappointing for those with advanced cancers of this type. But the researchers stressed that this is a very promising outcome.

Consider the advances that have been made. TNBC used to be treated with untargeted therapies, kind of like throwing everything you’ve got at the tumor and hoping that something “sticks”. On the other hand, pembrolizumab is a targeted therapy for this specific subset of TNBC, and that makes a huge difference.

There has been a push to address the complexities of TNBC and large strides have been made in understanding what makes it tick. New therapies are being approved and they are making researches optimistic about eventually being able to cure the disease.

As an example, in April 2021, the FDA approved the use of sacituzumab govitecan (Trodelvy) for the treatment of certain types of TNBC (after conditional approval had been granted in April 2020). As noted in the May 12, 2021 edition of the Cancer Currents blog, sacituzumab is comprised of an “antibody coupled to a more potent form of the chemotherapy drug irinotecan (Camptosar). The antibody binds to breast cancer cells, delivering the chemotherapy directly to those cells.”

There’s good news for some patients with advanced triple-negative breast cancer.

Notably, patients receiving sacituzumab lived a median of 11.8 months longer compared to 6.9 months for those patients receiving the chemotherapy alone. Positive results were also obtained for patients with brain metastases, where the cancer has spread to the brain, who tend to have worse outcomes when treated only with chemotherapy.

There is still so much more to learn. Cancer is a puzzle and researchers have known for some time that the pieces do not yet fit together cleanly. But each one of these advances brings us more effective treatments for TNBC, addressing more specific targets on the tumors. Lifespans are increasing and for many, cancer is taking the form of a chronic disease, not a death sentence.

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REFERENCES

Cancer Currents Blogs

Sacituzumab Govitecan Approved for Metastatic Triple-Negative Breast Cancer, Cancer Currents, May 28, 2020: https://www.cancer.gov/news-events/cancer-currents-blog/2020/fda-sacituzumab-govitecan-triple-negative-breast-cancer

Sacituzumab Govitecan Earns Full Approval for Triple-Negative Breast Cancer, Cancer Currents, May 12, 2021: https://www.cancer.gov/news-events/cancer-currents-blog/2021/sacituzumab-govitecan-tnbc-regular-approval

Pembrolizumab Improves Survival in Advanced Triple-Negative Breast Cancer, Cancer Currents, August 9, 2022: https://www.cancer.gov/news-events/cancer-currents-blog/2022/pembrolizumab-triple-negative-breast-cancer-improves-survival

KEYNOTE-355 Clinical Trial
(as of this posting, the full article is not yet available to non-subscribers)

Cortes et al. (2022) Pembrolizumab plus Chemotherapy in Advanced Triple-Negative Breast Cancer. New Engl J Med, 387, 217-226. 10.1056/NEJMoa2202809

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.

Chemo Fatigue: What Is It Like? [video]

[IMPORTANT: Please be aware that at the time the videos were filmed, I was in a very negative headspace. My experience should not be considered an example of a “typical” experience because with cancer treatment, there is no such thing. Just as cancer is a disease specific to an individual, so is the treatment and, as a result, one’s response to it. If you are interested in viewing the below videos, please keep all the above in mind.]

I’ve posted quite of few photos of my cancer journey. You’d think I wouldn’t have any more pics left, but–surprise–I do!

I made some important (to me) videos after my sixth and final infusion, but to date I’ve hesitated to post them. In part, this is because I’ve tried to remain anonymous in this blog, but in the clips, you get to see my face. And it’s not a pretty sight.

I didn’t feel human.

I was the weakest that I’d been my entire adult life. My body was feeling the strain of multiple infusions of chemotherapy, I didn’t recognize myself in the mirror and my voice didn’t sound like my own. I was so sick and tired of this part of the treatment and wanted it to be DONE.

At this point, I wasn’t suffering that entire cascade of side effects that I’d experienced after my first chemo infusion, and I’d learned to better deal with what I did experience, and even what to do to avoid some of the side effects.

However, the fatigue I felt was far beyond what I imagined it would be. And it was coupled with constant background nausea, like a slow burn in my gut. This was a result of losing the rapidly-dividing cells that lined my intestinal tract; they were felled by the chemotherapy, collateral damage as the medicine killed off potential cancer cells.

Strangely, there were also times when I was actually quite hungry, but literally too tired to try to get something to eat. Even calling for a member of my family to bring me food required too much effort. Speaking took a lot of energy.

The final infusion’s side effects lasted the longest. A full week after my infusion I was still very unsteady and barely made it to work for a few hours.

It’s worth noting that this was pre-pandemic and I wasn’t properly set up for working from home. Were I experiencing chemo treatment now, I’d be able to get more work done…likely to my detriment, unfortunately, because I really needed that time away.

It took five years for me to decide that it was time to post these videos. Apologies if they get a little intense:

August 13, 2017 – Cancer fatigue, part 1
August 13, 2017 – Cancer fatigue, part 2

Putting a Hold on Looking for Trouble

Last year at this time, I feared that I had heart issues based on what I had read about some of the cancer medications that I had been on, so I went to the cardiologist and they administered some tests. When I came back to the cardiologist to discuss results with the doctor, I was told that they had found “something” in the echocardiogram and Holter monitor readings.

But I still had questions, so I had a consultation with the cardiac nurse, who went through everything with me.

In the back of my mind, there’s a fear that my body is harboring serious health problems.

And it turns out that while they did find “something”, it wasn’t really anything out of the ordinary, beyond normal wear and tear. I was assured that my heart was very strong and healthy and I could continue to push through high-intensity workouts.

Still, it was recommended that I get checked out again this year.

But you know what? I’m not going right now. It felt like anxiety about the scans and then waiting for the results did worse things to my heart than whatever I might have been already experiencing.

I talked this over with my oncologist, who agreed.

The fact is, there are things that you need to get checked out, especially as a cancer survivor. But for other things, especially without a specific indication that there’s something wrong, you are simply looking for trouble. And if you’re looking for it, you’re going to find it.

Our bodies are not perfect. And the older we get, the more aches, pains and abnormalities we have. That doesn’t necessarily mean that there’s anything “wrong” that immediately needs to be fixed.

For now, I’m halting my search for trouble and taking the time to breathe deeply and just live.

Anxiety was the driver for me to get tests run. I was overreading about everything that could possibly go wrong–given the medications that I had been taking–and then rushing out to make sure that it hadn’t yet in the hope that I could rectify any budding issues.

And to be fair, there are still things that I could look at, still specialists I could contact. But perhaps I need to chill a bit…

…but perhaps I need to chill a bit. If it were to progress, would I stop exercising? Absolutely not. So then perhaps it’s best to take a wait-and-see approach for now.

All of this is so different from cancer, which drives us to seek treatment immediately. I am forever primed to worry about what might be happening in my body. But I also recognize this as a psychological side effect of cancer. I can’t let fear take over the rest of my life.

So for me, it’s time to stop looking for trouble, stop fearing for the future and simply relax and enjoy what’s happening in the present moment.

Four Minutes of Hovering

Last week I had a 3-D mammogram. This scan marks a bit over five years since the diagnostic test that indicated I had a solid tumor on the outside of my left breast.

Heading into this appointment, I wasn’t particularly worried. Yes, I admit to having little heartbeat skips over “lumps” in my breast that aren’t really lumps: if you recall, I had felt something before my last oncologist visit; my doctor reassured me it was nothing.

I will never again hear the word “lump” and NOT think of cancer.

And because last August I’d had a chest MRI, a more sensitive scan than even a 3-D mammogram, it was HIGHLY unlikely that there was anything to be found in this mammogram.

But still, after the pictures were taken and the mammography technician left the room to consult with the radiologist, I got that all-too-familiar uneasy feeling.

WHY? I knew that the radiologist wouldn’t find anything. The technician practically said that out loud, since she was aware of my recent MRI.

But still.

I sat alone in the mammography room, breathing, looking at the clock on the wall and simply hovering. My attention was like a butterfly looking for a place to alight. I wasn’t holding my breath…but mentally, I had put the rest of my life on hold when the tech stepped out the door.

It took all of four minutes and the mammographer returned and gave me two thumbs up.

For four minutes, I had no plans for anything outside of the room I was in.

I breathed a sigh even though I had expected the good news. And while I wasn’t “freaking out” waiting for the response, it became apparent to me that I might always feel uneasy during that period of uncertainty.

I didn’t want that. I wanted to be completely unaffected, as if I had never had a bad experience and my heart was calm.

But hovering it was, because there are no guarantees. And as the gears of my life started turning once again, I remembered that there was no going back. All the negatives that have happened have happened and I can’t change that.

Eventually, years from now, my emotions may soften, but in the meantime, I’m just going to have to be okay with hovering for a few minutes.

Five Years Down and Moving Along

I had another oncologist appointment last week. This one was a milestone, since it officially marks five years since my breast cancer diagnosis.

Five years ago, I was told that with triple-positive breast cancer I had an 85% chance of survival…but there in the fine print was added “five-year survival”.

Delays in routine care due to the pandemic have resulted in more late-stage diagnoses.

With advances in treatment for HER2-receptor-positive tumors (HER2 being the third marker in “triple-positive”), that percentage has improving. But it’s still interesting to note that there’s a finite end to what reliable survival info your doctor can give you, since it’s hard to run longitudinal studies with a large group of participants.

In any case, my oncologist was happy to see me alive and kicking. With the pandemic, women voluntarily and/or involuntarily delayed preventative care, and as a result, there has been an increase in the percentage of women presenting with advanced-stage breast cancer (from UC San Diego Health). Given how far treatment itself has come, this is a distressing statistic because it means that we have effective treatments but patients are not getting them soon enough. So perhaps, for him, I was a five-year treatment success in the midst of all of this.

My oncologist’s concern now is less that my tumor will recur and more that whatever conditions were responsible for the first tumor might result in a brand new one. He still checked me over carefully. My bloodwork looked good with only a lower white blood cell count (“that may never recover,” he’s said in the past). I have no headaches, my bone pain has significantly decreased and other long term physical side effects from endocrine therapy have just about Sudisappeared.

Five years post-diagnosis I’m turning down another path, one that I would have never explored had it not been for what cancer made me face.

I’m still dealing with things like distractability issues, but that could also be due to menopause and the pandemic situation and maybe just the march of age in general. I’ve noted before that it’s hard to pull apart all the factors to identify a single culprit.

My oncologoist remarked that I looked like I was doing well, that I exuded a positive “aura”, and while I’m sure he didn’t mean that metaphysically, the truth is, I feel like I’m finally moving forward in my life again. This coming weekend I start a three-month yoga teacher training course that will move me down a new path for the future.

I still plan to keep posting weekly during this time. We’ll see how it goes!

What If It Isn’t?

“Supposing a tree fell down, Pooh, when we were underneath it?”
“Supposing it didn’t,” said Pooh after careful thought.
Piglet was comforted by this.

A. A. Milne

So, I felt a “lump” under my left nipple, what I refer to as my cancer-side. It wasn’t the same kind of lump that I remember from cancer but when I thought of how I’d describe it (mass, thickening, etc.) I came up with cancer-sounding descriptive words.

This “lump” was also way bigger than my tumor had been.

I think I feel “something” and –BAM!– my mind takes me to worst-case-scenario land.

Now you might think that I would reason with myself. I’d had an MRI in the late summer that showed nothing. A real lump that big would have shown up.

Again, it wasn’t a lump, it was a “lump”. But in the back of my mind, a film starting playing…

I was writing letters to my friends on how much I had appreciated their friendship. Practicing how to tell my kids that I wouldn’t be around to see them graduate from college. Posting my final thoughts here.

It sounds sooo melodramatic but my brain is like a motor boat left unattended with the engine running. And it’s just heading away on its own on a course that no one plotted.

Why do I “go there”?

There is a part of the brain called the Default Mode Network (DMN), which is the area that is more active when you’re at rest and otherwise not focusing on anything. There is a nice “plain-English” explanation here (from an accompanying article to meditation teacher Jon Kabat-Zinn’s Mindfulness course on Masterclass.com). It describes the role of the DMN in “self-reflection…social evaluations…memories…envisioning the future”. And it also notes that problems within the DMN can predipose people to a variety of cognitive issues, including anxiety.

Start my motor, cut me loose…and off I go.

This would explain a lot about my personal default mode.

The article goes on to describe how meditation can “keep the mind from wandering into stressful territory, like reliving traumatic events from the past or anxieties about the future.”

Well, it’s good that I’m meditating, then. But I’ve already put a lot of practice into panicking. I’m an expert hand-wringer. I have a lifetime of experience helped along by a series of anxiety-provoking events. Meditation is chipping away at my hypervigilance, but it’s a slow process.

The main thing that has changed, however, is that now I’m more aware when the motorboat putters away. It used to blindsight me and before I knew it, I was hit by a tidal wave of anxious sensations (tightening, gripping, nausea…). I didn’t realize that this habit of automatic thoughts was driving my anxiety.

Now, when I start down the road of “what if it is…”, I can stop and ask, “what if it isn’t”?

And that comforts me.

Still Not Stinky: Chemo & Body Odor 5 Years Later

After finishing chemo for breast cancer and noticing that I had no body odor, I decided to write a post about it because the Internet was silent on the topic. Apparently, I wasn’t the only one who’d come up empty. A number of you commented that you’d noticed the same thing and similarly found no explanation.

Well, five years after my initial diagnosis, maybe 4.5 years after finishing chemo, I still can’t locate info on the Internet about this.

If I do find the odd article about cancer and body odor, it’s about the exact opposite: smelling bad as a result of the disease or certain medications. Not what I’m looking for.

Hey, Internet! Is there really no one looking into this?

It is quite weird that I can’t even find anything in the US National Institutes of Health PubMed database, so I would suspect that chemo-related loss of body odor is not on the radar of researchers. Well, it’s certainly not on my oncologist’s radar because he said he’d never heard of it and didn’t think it could be attributed to chemotherapy. Personally, I can’t imagine how it could be from anything else.

I’m going to pester him about it again during my next appointment. Usually armput odors are caused by bacteria. As an article from the Cleveland Clinic explains, odor is produced “when bacteria on the skin break down acids contained in the sweat produced by apocrine glands, which are located in the armpits, breasts, and genital-anal area. The bacteria’s waste products are what produce the smell.”

And NPR ran a story on researchers looking into what the worst bacterial offenders are, noting, “When the bacteria break down the sweat they form products called thioalcohols, which have scents comparable to sulfur, onions or meat.” The greatest culprit? Staphylococcus hominis.

So then maybe the chemo stops the production of thioalcohols? Or chemo wipes out the S. hominis living on our skin? I’m surprised that no one is researching this in the context of chemo patients, because it seems like it might have some health implications. We still don’t know all the side effects of chemo drugs and it would be useful to start a conversation about this one.

If you’re experiencing this, please tell your medical team. They might simply not be aware of what’s happening.

I’m not saying that I smell like a bouquet of flowers, but according to my husband, there’s no “sweaty pit” odor.

And you might be wondering what my current experience is, almost five years later. Even though I departed the realm of the completely-odorless about two years after completing chemo, I still have very little body odor. And it’s not like I don’t give it chances to fester since I work up a good sweat when I exercise. Note that my left armpit, which was thoroughly irradiated, exudes almost no noticible odor. My right armpit doesn’t smell very much, but sweat that gets on, say, a sports bra will start making the fabric stink the next day. (Let’s just say that I’ve been testing this out.) The skin in the armpit itself? Minimally, and that’s with no deodorant, although I do wear it anyway.

Certainly, the six weeks of radiation therapy on my left side would likely have an effect, and so it would make sense that there’s a difference in odor between both armpits.

Still, the “natural” (and unfortunately overpriced – yeesh!) deodorants do a very good job of fragrancing my armpits because they don’t have to work very hard.

So the mystery remains. I’m going to keep digging into this as it’s likely there’s a disruption of our skin microbiome involved, and given the popularity of that research (see microbiome and armpit odor info at drarmpit.com), someone may be looking into the connection between chemo and body odor in the future. Until then, I’ll just remain happy and relatively unstinky with fingers crossed that it continues.

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Many thanks to my very patient husband who played along and agreed to smell every place I pointed to. I’ll revisit the odor issue during the summer just in case…