Some of our greatest strengths are born in our lowest moments.
While I try not to keep returning to stories about “how far I’ve come” since my breast cancer diagnosis almost six years ago, for the start of 2023, I wanted to do a teensy bit of navel-gazing and take stock of how different everything looks compared to how it did after my 2017 diagnosis…and even from just a year ago.
My breast cancer story started the same way as it does for most of those diagnosed with cancer, with a lot of shock and disbelief. There’s nothing new or special about that.
However, for me cancer had been my ultimate health fear, the worst thing that I could image happening, particularly because I grew up during a time that cancer patients had poor prognoses and I had lost dear family to the disease. My exercise, dietary and lifestyle habits were in part driven by health concerns and that’s why my eventual diagnosis felt all the more “unfair”.
The absolute worst health catastrophe that I feared could happen to me actually did happen…and I was too bitter to appreciate that I survived it.
Not only did I survive the treatment, I have slogged through lasting side effects. Trapped by fear and anger, I lost the initial positivity that I’d experienced right after completing chemo and radiation — I mean, after all that almost anything is going to feel better — and became mired in frustration.
When I finally managed to get through my head that there are many bad things that happen to people who do not deserve them, and many far worse than my own, I was able to move past my preoccupation with myself. That took longer than I’d like to admit.
But allowing that time to work through anger and fear until I got to the point of acceptance was so important for me. And the magical part of this is that acceptance was followed by an unfettering of my thoughts. Holding that bitterness had taken so much energy that little remained for other, more important things.
At the time of my diagnosis, I was fearful and bitter. A mere year ago, I was still angry. But in 2023, I have given myself the gift of freedom from that negativity and that allows so much space to breathe deeply and turn my attention towards better things. It was that release that took with it a nice chunk of anxiety that had likewise held me captive.
And now, instead of being just a survivor, I am finally feeling like I’m thriving.
So, as I’ve written about in previous posts (here and here) there’s this thing called ‘chemo brain’, and contrary to what you might find when you google it, it doesn’t necessarily go away after you finish cancer treatment. It also has a longer name: Cancer-Related Cognitive Impairment (CRCI).
This can be particularly frustrating for those of us who are expected to perform “as before” (meaning, prior to getting cancer) and yet increasingly fall victim to distractions, searching for words, forgetting things as soon as we’re told them, and in general, wondering whether we’ve now come down with a mix of dementia and ADHD.
There is help, however, and it’s arrived in the form of a class called Memory and Attention Adaptation Training (MAAT). I had the opportunity to take this 8-week class in Fall 2022 and it recently concluded.
The class is intelligently put together, first showing students the science about what they are experiencing (and that it’s not early-onset dementia!), and then over the next two months, teaching tricks and techniques for helping navigate the new landscape of CRCI.
This includes learning stress management techniques, improving sleep and pacing oneself, making self-care a high priority. But the majority of the class was devoted to learning how to use methods such as rehearsal/repetition, situational awareness, scheduling, distraction reduction, active listening and imagery. These help us maintain focus and retain information while reducing overwhelm.
I took the class through SHARP Hospital in the San Diego, CA area as part of their second cohort. It was taught by a clinical oncology social worker (herself a breast cancer survivor) and a speech pathologist, and their expertise made the class even more worthwhile. While the first cohort was in person, we in the second cohort had the benefit of taking the class via Zoom, which helped with accessibility, especially for those of us who are still working.
And a number of us there were already about 3-5 years out of treatment, which dispells the notion that chemo brain only lasts during treatment. Our cohort members’ ages ran the gamut from early 30s to well into retirement, illustrating that CRCI can show up in any cancer survivors regardless of age.
Realizing that this is affecting many more people that have been reporting symptoms, the SHARP Health Care system has opened the classes to individuals in other health systems in the San Diego area.
No matter where you live, if you are a cancer survivor experiencing some form of cognitive impairment, I urge you to 1) tell your oncological team (They need to know this is happening!) and 2) ask them about the availability of MAAT classes in your region. MAAT is not currently being offered widely, so please make your needs known so that this service can be expanded to those who need it.
Curiously enough, one of the first assignments we had in the MAAT class was to work with gratitude – yes, it really does help! Such a perfect practice to begin at this time of the year! Happy Holidays to all! ❤
Many of us who have lived through early stage breast cancer with lumpectomy surgery have also gone through radiation treatment.
If you’ve been there, you know the drill: 4-6 weeks of daily radiation sessions. Each one is relatively short, but there’s the time involved in getting there, changing into a gown, waiting for your turn, having the treatment, changing back into your clothes and getting back home (or work or wherever else you need to be).
And this happens every single day, five days a week, for weeks. You get to know your radiation therapists very well. And they get to see your breast over and over again. It goes on and on and on.
Women who have an elevated risk of having the cancer recur at the tumor site are usually given an additional “boost” of radiation to that area. This takes place after the initial weeks of radiation, extending the length of treatment. However, researchers discovered that this boost could be given concurrently, thereby shortening the number of weeks that patients had to undergo radiation without compromising its effectiveness.
From the perspective of a patient, this is very welcome news. Setting aside time every day of the week to make the trip to the cancer center for treatment only works if your other responsibilities are flexible. I was working part-time during this, had access to a car, could get to the cancer center quickly and could be done in time to pick up my kids without too much of a problem. My bosses were extremely understanding and gave me the latitude I needed to complete my treatment with a minimum of stress.
For many, however, this might not be the case. Being able to shorten the overall treatment time could be critical in helping patients finish all their sessions.
It is heartening to know that as cancer treatments evolve, they become much easier to incorporate into our everyday lives. I am hopeful that the changes that come about over the next 10 years will provide even more options for successful completion of treatment with a greater survival rate for all.
Note: the results of the referenced clinical trial were presented on Oct 24, 2022 at the American Society for Radiation Oncology (ASTRO) annual meeting in San Antonio, Texas with Frank Vicini, MD as the study leader. My expectation is that more information will be published and I will try to post it here once it is.
As we close out October, otherwise known as “Breast Cancer Awareness Month”, I wanted to share a video of a webinar about advances in the fight against breast cancer, offered through the Yale Alumni Health Network, led by Dr. Jamie Wells.
The speakers included Dr. David Mankoff (from UPenn) and Drs. Lajos Pusztai, Maryam Lustberg and Eric Winer (all from Yale) as they talked about research being done on hormone-positive, HER2 receptor positive and triple negative breast cancers. I’ve pasted in the Vimeo clip from Twitter, but also offer my simplified synopsis below. If you have the time to watch (~45 min for the talks, then interesting Q&As for about 20 minutes), I highly recommend the video!
In the midst of the discussions, it was heartening to hear that the doctors placed a lot of emphasis on both health disparities in different populations and also the search for treatments that would not severely impact a patient’s quality-of-life. These are two important topics. I appreciated that they acknowledged that we cannot make advances in the disease if we are leaving behind large numbers of people for whom treatment is inaccessible, and that a treatment is not viable if it successfully treats the cancer but damages the patient in other ways.
The best overall news is that since 1990, deaths from breast cancer have decreased by a third. That’s a significant improvement within the past 30 or so years, even though the prevalence of the disease is increasing. Dr. Mankoff noted that the survival rate improvements are due not simply to earlier detection, but also to advances in the treatments.
HORMONE-POSITIVE BREAST CANCER
Dr. Lustberg spoke about hormone-positive breast cancers and started with a quick explanation of the history of such cancers, and then explained how current-day personalized medicine (genomic profiling) can identify the patients who might be spared chemo based on the characteristics of their tumors, and how targeted therapies improve survival rates. She experienced some audio issues towards the very end of her talk, but not much information was lost.
She acknowledged that the “most effective drug is one you can take”, stating that there’s been an effort to try to understand the toxicity of various treatments. If the drug’s side effects are too negative, patients will have a hard time continuing to take it. She noted the importance of keeping the patient involved in the decision making process, something that all of us who have been through this can applaud. It’s too easy for oncologists to forget that they’re treating a human being who will be dealing with the concequences of heavy treatments.
HER2+ BREAST CANCER
Dr. Winer discussed HER2-targeted therapy, noting that prior to the year 2000, it was considered one of the most aggressive forms of breast cancer with common recurrences, after which the prognosis for survival was poor. As a HER2+ cancer suvivor, I am so thankful that this is no longer the case! The landscape changed with the introduction of monoclonal antibody drugs such as Herceptin, and the development of additional drugs, should Herceptin stop working, has given patients with this type of cancer much more hope for a full recovery.
Two of these new drugs for metastatic HER2+ cancer are “antibody drug conjugates” (T-DM1 and trastuzumab deruxtucan). Dr. Winer described them as Trojan Horses, as they can deliver the chemotherapy with which they’re paired directly into the cell, greatly decreasing side effects to the patient.
Perhaps most important, Dr. Winer actually used the word “cured” when talking about the outcomes for early stage HER2+ cancers, something that is truly remarkable. This is especially true for women with stage I cancers.
Many patients with stage II & III cancers receive the drugs prior to surgery, which can decrease the need for mastectomies and complete removal of the lymph nodes. In addition, pre-surgical treatment can guide the medical team in adjusting later therapies, based on how the tumor reacts to early drug administration.
Finally, Dr. Winer spoke of the stark disparities in cancer care, noting that black women are twice as likely to die from breast cancer as white women. Eliminating these disparities is his number one-rated area of importance for where to focus future efforts, something I strongly support.
TRIPLE NEGATIVE BREAST CANCER
Dr. Pusztai spoke of Triple Negative Breast Cancer (TNBC), and having lost several friends to this specific type of cancer, I was very interested in treatment advances that have been made. He described the differences beween TNBC and hormone positive breast cancers, noting that it’s likely that these two diseases orginated from completely different cell types, suggesting that these are different diseases and should be viewed as such.
It was exciting to learn that most of the patients with early stage TNBC disease are able to be cured (again, that beautiful word!). We now have both better treatment strategies and new drugs, and success rates are improving year by year. Dr. Pusztai emphasized the benefits of completing chemotherapy prior to surgery, going against our strong impulse to “get the cancer out” first. With the drug-first strategy, medical teams can adjust the post-operative treatments as needed.
The thing that was so amazing to me was that the recurrence-free rate of survival was 85-90% with these “modern regimens” for early stage disease. That’s impressive!
Next on the horizon is fine-tuning the right balance of drugs for patients, given that chemotherapies are still toxic.
Dr. Pusztai stated that he felt we already have the drugs with which to cure “at least some” of the metastatic TNBC patients, especially for those who are diagnosed at stage IV (rather than having earlier-stage disease that was treated and later metastasized). The idea is to utilize existing drugs but apply them using the new treatment strategies that have been developed. However, Dr. Pusztai stressed that new drugs are also being developed.
There were a range of excellent questions that began at about the 45-minute mark, but as mentioned above, I enjoyed hearing the admissions by the doctors that they considered quality of life to be a very important factor in whether or not to continue medications, and they acknowledged that it is the patient who should have the control to balance their risks against their treatment options. Other questions included recurrence in hormone-positive cancers, development of drug resistance, genetic testing, continuation of care (“risk-stratified follow-up care”) and second opinions.
Dr. Winer commented that within a decade he felt we will have all the treatment we need to prevent and cure breast cancer in most patients, so again, he stressed that the focus must turn to making that treatment available to everyone, regardless of who they are.
LAST BUT NOT LEAST…
Dr. Winer admitted that many doctors, in treating patients, end up “taking over people’s lives and medicalizing their lives”. His approach, therefore, is “to try to provide therapy without making someone either unhappy or feeling like they are attached with a leash to their doctor’s office.” While there was some discussion related to this, I appreciated that doctors are actually thinking about this and want to allow patients to “live their lives”.
Finally, I was amused by the doctors’ admissions that even they found the drug names to be unpronounceable. It’s true that in my own treatment, I usually stuck to the easiest name to pronounce…I can’t imagine having to use those names on a daily basis!
I was going to write about something else for this week’s post until I realized that I had another five-year breast cancer anniversary to share: the end of my radiation treatment.
It had run for six weeks, five days a week — going to the cancer center became a daily habit. But on October 23, 2017, I rang the gong signifying the end of treatment, said my good-byes to the radiation oncology staff and left them with baked goodies.
With 2022 being five years since my cancer diagnosis, I’ve had a number of anniversaries to share this year. What makes Oct. 23 significant is that it marked the end of all the “tough stuff” that people scare you with about cancer. By that date, I’d put the diagnosis, surgery, chemo and then radiation behind me.
Because 2017 had been a miserable year, when radiation was done I thought I could finally take a deep breath. I’d waited for this point in my treatment for a long time and decided that I would lose myself in the spirit of the holiday season.
The problem was, you never really get rid of all your concerns. You release some, but others show up to take their place. I finished radiation…but wait, there’s more! Now I was going on tamoxifen and that brought a whole new set of issues, and yes, fears, with it.
So I spent Christmas season doing my best to enjoy myself but the holidays passed by and left me feeling a little empty. I’d expected a lot out of them and they didn’t deliver.
Admittedly, it was a tall order. After cancer, I tought the world would shine with joy, but that wasn’t realistic. Cancer isn’t the kind of disease you say to, “done!”, brush your hands off and walk out the door. It tags along behind you, if not as the disease, then as its shadow.
Fast forward five years to now…ok, ok, I know what I got wrong back then.
I had felt like life owed me something amazing because it had put me through cancer. I thought I deserved a post-cancer life that was perfect. Of course, it wasn’t. And it still isn’t.
So if there’s something to celebrate, it’s that I learned a few things over the past five years.
This holiday season I’m not going to be expecting things to wow me. But I am going to be enjoying the fact that I am still physically active and working the same university job, expanding my horizons as a new yoga teacher and finding fun ways to spend my time. And mostly, that I have moved past the feeling of anger that I felt about cancer and found some gratitude to fill its space.
I know I keep going on and on about how much better life is when you’re not carrying the burden of anger, but honestly, if I’d known that acceptance would lighten me up this much, I would have done it sooner!
Since we’re halfway through October – Breast Cancer Awareness Month – this is a good opportunity to remind everyone who’s had a cancer diagnosis that you’re still in control.
That might be very different from what you’re feeling. The whole thing with cancer is the sense that your life is out of control. Even your most faithful ally, your body, seems to be out to get you, growing a tumor behind your back.
That’s to say nothing of how your weekly schedule gets highjacked with oncological appointments, radiation treatments and days recovering from chemo. Then there’s the onslaught of new medical terms, the many pills that you’re supposed to take, even the practically unpronounceable chemotherapy drug names (what kind of a suffix is “-ib”???).
If anything, this might feel like the most out-of-control time of your life. When you’re slapped with a difficult treatment plan, you want it all to stop, but your oncologist tells you, “we won’t let you skip an infusion or stop taking your medication.”
That sense of being forced to do something (especially when it’s unpleasant) can open the floodgates to a deluge of anxiety on top of the fear and frustration that you might already feel about your cancer treatment. No one wants to feel like they have no say in a matter that affects them so deeply and personally.
But remember this: you always have a choice. Even though your medical team might not be phrasing it that way, you are still in control.
Perhaps this tiny acknowledgement may relax some of that perceived pressure and actually make it easier to continue. Your cancer treatment choices remain yours to make, so allow that realization to help you to step back, get perspective and weigh your options. When you demand space for yourself, you have room to think and it’s easier to act in your own best interest.
So, breathe. You’re still calling all the shots.
And, hey, medical team: maybe stop being so pushy and remind those cancer patients that they get to make the decisions about their treatment and their lives. It would go a long way towards helping your patients feel better about their treatment plans, like they’re part of the team instead of a prisoner of their situation.
You’ve probably heard this phrase in a commercial somewhere: “If I can do it, so can you!” It’s meant to make difficult goals seem attainable.
Some people may find this very motivating. And it certainly can be. Sometimes all we need is a little spark of hope to push us into achieving great things.
But it can also be used as an instrument to shame people into thinking that they’re not trying hard enough. That there’s something wrong with them.
From a marketing standpoint, the idea is that you push responsibility off the item or program or whatever it is you’re selling, and onto the person buying into it. Because obviously, there’s “proof” that it works. I mean, it worked for someone. So if you’re not getting the same results, it’s an issue that you have.
I’ve also seen this used with cancer patients. An exceptional individual who has defied the odds and still accomplished so much under negative circumstances is held up as an example of what is possible. They’re called an inspiration.
And it’s true, what they did was possible. For them. But we know very little about what else was going on in their lives to support their endeavors.
It’s admirable that these people are able to achieve what they have, but it’s unreasonable to expect that from everyone. And sometimes obstacles that no one else can see (emotional pain, underlying fears, mental illnesses) may hinder us, and the best that we can do is get through the day. Or sometimes, just manage to crawl out of bed.
We may know this and yet still hold ourselves to those standards, and as a result, reap disappointment.
Why am I bringing this up now?
Because as a cancer survivor, I’ve expected things of myself that I simply cannot do anymore and then became frustrated with my inability to fulfill my unrealistic expectations.
And hated myself for it.
So this is a little reminder to consider what is right for you. Definitely, set goals and seek higher heights! But make sure they are your goals and they fit your life and abilities. That they are meaningful for you. This may require you to adjust your expectations in a way that demonstrates respect for yourself.
Because if someone is trying to amaze you with whatever they’ve done that they’re trying to convince you to do, consider that they might be getting far more out of your willingness to try to live up to their standards than you’ll get out if it yourself.
From what I can tell, the loss of body odor following cancer chemotherapy isn’t widely acknowledged within the medical community, but it’s certainly something that many of us have experienced.
Based on what I’ve read, this might be a result of the weedwhacking effect that chemo drugs have on our microbiomes. Regardless, the result has been positive for those of us who find that we don’t have to worry about being smelly.
However, I happened to catch an interview on National Public Radio (aka NPR) that helped make more sense of what was actually going on, even though it was a bit of a killjoy. Listen to it here, where you can also find a full write-up of the piece.
Basically, that sweaty stink that we find repugnant is from a compound produced by bacteria living on the skin. One species of these bacteria that’s associated with an onion-like odor is Staphylococcus hominis.
And unfortunately, these smelly microbes are very beneficial, helping protect humans from things like eczema and MRSA (antibiotic-resistant Staphylococcus aureus). As one of the researchers puts it, sweat is an “antibiotic juice” that forms a protective layer on our skin as it dries.
Yeah, I know what you’re thinking: cancer is miserable enough, and you HAD to take away this one little thing (loss of body odor) that was the only perk to chemo?
Well, as mentioned above, I’m not qualified to definitively say that it’s the chemo that kills the skin microbes and makes you not smell. I’ve been unable to find research studies that examine the effects of chemotherapy on your skin’s microscopic residents. Nonetheless, I’ve tried to contact the researchers mentioned in the NPR story to see if they’ve had any experience with chemotherapy and loss of body odor in cancer patients. If they reply, I’ll report back to you.
For now, if you’re happy being odorless, keep enjoying it.
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.
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.
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.
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.