Tag: Chemo

“Not Going It Alone”: Complementary Cancer Therapies

With as much sophisticated research as has been done on cancer, it still remains a confounding disease and much of the treatment may seem to be, for lack of a better word, medieval.

So it shouldn’t seem surprising that cancer patients also reach out for less conventional therapy to help themselves through the treatment process.

First, a clarification of terms used in this post:

Acupuncture is utilized as a non-standard treatment (for those who can take more poking)
  • Conventional medicine: chemotherapy, radiation, surgery, immunotherapy, etc., prescribed by your medical team.
  • Complementary medicine: non-standard treatment used in conjunction with conventional treatment; also called Integrative Medicine.
  • Alternative medicine: non-standard treatment used instead of conventional treatment.

Therefore, generally speaking, what distinguishes complementary from alternative medicine is whether it’s used with standard medical treatment.

According to a study (Crudup et al., 2021) that was presented at the 2021 Annual Meeting of the American Society of Clinical Oncology (ASCO), 73% of breast cancer patient participants stated that they employed complementary therapies in their treatment. However, while oncologists were supportive of such therapies, they were not aware of the extent to which their patients utilized them and thought that only 43% of their patients did.

Patients get more benefit from spiritual practices than most oncologists realize

Furthermore, oncologists felt that counseling, support groups, exercise, etc. were the most effective non-standard therapies, in contrast to patients who found great benefit in meditation, mindfulness and spiritual practices. While two-thirds of both patients and oncologists felt that complementary medicine improved quality of life, a majority of patients also felt that it improved their outcomes.

Wayne Jonas, MD, a co-author of this study, says: “Cancer is a complex disease that affects every component of a patient’s life. While conventional medicine is effective for curing disease, it can fall short in helping patients heal. Patients are turning to these therapies to look for hope and to improve their quality of life and well-being after diagnosis… .”

What types of therapies do these include? The website “Cancer Health” provides examples of some complementary treatments (see here for an explanation of each):

Acupuncture
Aromatherapy
Art Therapy
Biofeedback
Cannabis
Herbal Therapies
Labyrinth Walking
Massage
Meditation
Music/Dance Therapy
Qigong
Spirituality
Tai Chi
Traditional Medicine (Ayurvedic, Chinese, etc.)
Vitamins and Supplements
Yoga

[This list is by no means exhaustive.]

I used a number of these complementary therapies myself and can attest to the important role they played in my recovery. As Dr. Jonas points out above, conventional treatments “can fall short in helping patients heal” [emphasis mine], whereas non-standard therapies seem to focus on that aspect.

I believe that these additional therapies, particularly more spiritual ones, are what give us hope throughout the cancer experience. Patients should be encouraged to seek out additional, complementary therapies to help themselves move through treatment, fully supported by their oncologists and ideally also guided by them.

Did you rely on complementary or alternative treatments to help you through your cancer journey?

~~~~~~~~~~~~~~~~~~~~~~~~~~~

REFERENCES

Original Research

Abstract for presentation:

Crudup et al. (2021) Awareness, perceptions, and usage of whole person integrative oncology practices: Similarities and differences between breast cancer patients and oncologists. Presented at 2021 Annual Meeting of the American Society of Clinical Oncology (ASCO), https://meetings.asco.org/abstracts-presentations/200685

Published research article:

Crudup et al. (2021) Breast cancer survivorship and level of institutional involvement utilizing integrative oncology. J Clin Oncol,  39, no. 15_suppl. e18588,
https://www.doi.org/10.1200/JCO.2021.39.15_suppl.e18588

Synopses

The ASCO Post Staff (June 7, 2021; updated June 15, 2021) Use of integrative medicine by patients with breast cancer. ASCO Post, https://ascopost.com/news/june-2021/use-of-integrative-medicine-by-patients-with-breast-cancer/

Tien C (June 28, 2021) Oncologists Underestimate the Number of Breast Cancer Patients Who Use Complementary Medicine. Cancer Health, https://www.cancerhealth.com/article/oncologists-underestimate-number-breast-cancer-patients-use-complementary-medicine

Descriptions of complementary therapies

Living with Cancer: Complementary Therapies. Cancer Health, https://www.cancerhealth.com/basics/health-basics/complementary-therapies

Things I Wish I’d Known About Breast Cancer, Part 2

This post continues what I started in the last post…a few things about breast cancer that I wasn’t aware of at the time of my diagnosis. Knowing the following would have made things a little less stressful:

1. Lumpectomy is a relatively uncomplicated surgery. I wish someone had explained this to me because I was a total wreck going into surgery (which happened to be the only surgery that I had ever had up to that point, making everything 10 times worse). Although I had decided against a full mastectomy, I was still so afraid of what a lumpectomy would entail, what I’d look like and how long it would take me to recover from losing a chunk of flesh.

The reality was…I was back at work the next week. No drainage tubes, no need for heavy analgesics — just a couple of ibuprofin the night after surgery because skipping coffee that morning resulted in a headache, but that was it. It was even hard to tell that I’d had my lump excised. Wish I could go back to my earlier self and tell her not to worry.

Stethoscopes are emotionless. Oncologists can seem to be too, but that’s by design.

2. Doctors are not in a hurry to give you good news. I think there’s a general feeling among medical professionals that there’s so much that can go poorly during cancer treatment that your doc isn’t going to go out of their way to pump you full of optimism. They probably practice keeping an emotionless face as they deliver all sorts of news, both good and bad. As a patient, however, I watched every flicker on my oncologist’s face for an indication of how things were “really” going. I feared that there was something he wasn’t telling me.

It wasn’t until perhaps a year or so later when I was expressing my fears to him about possible abnormalities inside my body that he uttered the phrase, “but you have your health”…and I was taken aback because I had never heard him sound so positive. It was almost a shock to hear him confirm that I was actually considered healthy.

3. Don’t expect things to be the same as before. Accepting that part of your life has changed will make it much easier to go on. This took me a while to appreciate because I was expecting to get back to doing and feeling everything the same as before my diagnosis.

But chemo (and eventually, age) pushed me through menopause, and I had to come to grips with, say, a high-intensity interval workout requiring more recovery time and that I had trouble remembering people’s names. Once I got to that point of acceptance, life after cancer treatment became easier, although it did take a number of years to get there.

4. Hair takes a while to grow back in. The reason I created posts with photographs that illustrated the cancer journey that my hair went through (here and here) was because I could not find good photos on the internet documenting the process. I did see images of a woman a few weeks after stopping chemo with little stubs already visible, but that was not my experience and it made my anxiety over my slow regrowth even worse.

Walking around with no hair was getting old and I was getting more desperate by the day to see evidence of sprouts!

If you’ve ever googled your chemo drug name + “hair loss”, you understand the fear: the first search result is usually a law office gathering info on behalf of cancer patients whose hair never grew back!

It took a number of months before my folicles woke up and actually started growing. I remember the moment that I finally saw growth on the front of my head and it was as if the heavens had opened up and divine light poured out onto me. Seriously. I would have avoided a lot of stress if someone had just told me that it’s gonna be a while.

~~~~~~~~~~~~~~~~~~~~~~~

Ok, ok, to be fair, my oncologist did urge patience with the regrowth but I was a jumbled mess of nerves and was feeling overwhelmed. All the internet propaganda about both (1) other women having much faster regrowth, or (2) other women never getting their hair back terrified me. Note to self: when feeling desperate, stay off the internet!

“Scatterbrained”: Yeah, Chemo Brain is Real

After a few years of wondering what the heck is going on with my head, I joined a Memory and Attention Adaptation Training (MAAT) class generously provided by my cancer center (which I’ll be posting about on a later date).

This is gratifying on two levels: first, that I can learn new strategies for dealing with the memory issues and distractibility that have been plaguing me since finishing breast cancer treatment five years ago; and second, and perhaps more important to me emotionally, that what I am experiencing is REAL. It’s officially termed Chemotherapy Related Cognitive Impairment (CRCI) or, informally, chemo brain.

I’ve been told that “you’re imagining this” (I’m not) or “you’ve always been like this” (I haven’t) or “just focus harder” (I AM!!!) or even “this is just an excuse” (Argh! No!), coming from people who have been annoyed by my memory lapses.

Chemo brain spends a lot of time just wandering around without an idea of how to get anywhere.

My brain isn’t lazy. As a matter of fact, it’s the opposite problem. My brain is too busy.

In the MAAT class, we learned of a study from the University of British Columbia (UBC) by Kam et al. (2016, Clin Neurophysiol) that examined what happens inside those brains that suffer cognitive impairment from cancer treatment, even years later. In that published study, the experimental group consisted of nineteen breast cancer survivors. All had undergone chemotherapy for early stage breast cancer and had subsequently self-reported cognitive issues.

Researchers at UBC compared these survivors against twelve (non-cancer) control subjects in a task that required sustained attention. All the participants’ brains were monitored via electroencephalogram (EEG) both while working on the task and while at rest.

The results were vindicating for me and, I’m sure, for others experiencing this. Normal brains cycle through periods of focus and periods of “wandering”. However, as the UBC researchers stated in a summary of their results (published here): “We found that chemo brain is a chronically wandering brain, they’re essentially stuck in a shut out mode.”

This was true even when the breast cancer survivors thought that they were focusing. Furthermore, the survivors’ brains exhibited activity even when they were instructed to relax.

Great. We know that chemo brain is an undeniable fact for some cancer survivors and can last for years — in this study, up to three years. However, for me and some of the people in my MAAT class, it’s been five years and we’re still dealing with this, which is frustrating. What can be done about it?

When anxiety and chemo brain collide, you get a confused goat tangled up in a rope. That would be me.

It won’t come as a surprise — anxiety makes everything worse, and that holds true for chemo brain too. As mentioned above, I’ll discuss this in greater detail in a later post, but basically, a main focus of the MAAT class is learning to handle stressors in an effort to relieve anxiety.

So now that I know that what I’m experiencing is a real thing, a large part of combatting it is what I’m already trying to do — mindfulness, meditation, yoga and similar sensible self-care. And while it might seem aggravating that even with all that practice I’m still dealing with this, I’m actually bouyed by the fact that every bit of mindfulness helps. The reality is, I’ve made a monumental amount of progress from where I was when I started, five years ago.

And that keeps me going. Where would I be if I wasn’t trying?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

References:

Reader-friendly summary:
“‘Chemo brain’ is real, say UBC researchers”, UBC News, Apr 27, 2015, https://news.ubc.ca/2015/04/27/chemo-brain-is-real-say-ubc-researchers/

The published study:
Kam JWY, Brenner CA, Handy TC, Boyd LA, Liu-Ambrose T, Lim HJ, Hayden S, Campbell KL (2016) Sustained attention abnormalities in breast cancer survivors with cognitive deficits post chemotherapy: An electrophysiological study, Clinical Neurophysiology, 127, 369-378. https://doi.org/10.1016/j.clinph.2015.03.007
Please note that the above study is not available free online at this time. For a pdf free of charge, contact one of the authors (email address next to their name at link above) or your local university library. Due to copyright issues, I am unable to distribute the full document myself.

Webinar: Recent Advances in Breast Cancer Treatments

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.

It’s so refreshing to hear the words “cancer” and “cure” used together in the same sentence. We are making serious progress now!

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.

There’s still a lot to be done, but all of this makes me feel so hopeful for a future in which a cancer diagnosis is something that we don’t have to fear.

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.

Q&As

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 hope you found this helpful!

Remember: You’re in the Driver’s Seat

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.

Does it feel like someone else is controlling everything in your life?

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.

This life is yours…and so are decisions about your cancer treatment.

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.

Maybe Being Stinky Is Not So Bad?

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.

This is NOT what you think of when someone says, “sweaty armpit”!

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.

Our stinky sweat may offer some protection from stuff like MRSA, shown on this CDC photo. They might look like cute fuzzy purple balls, but in the age of antibiotic-resistant bacteria, they’re potential killers.

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.

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.

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

It Took Cancer to Teach Me Self-Compassion

One thing I’ve had trouble with is expressing self-compassion. When you’re a driven perfectionist it’s easy to believe that “giving yourself a break” is tantamount to “going soft” and “losing your edge”.

I couldn’t forgive myself when I felt that I’d failed. And guess what, getting cancer made me feel like a failure. I had tried to live the healthiest adult live I could, given the sometimes-limited resources I had, often denying myself what others called “pleasures” or “indulgences”.

I’ve lived most of my life feeling like I had to constantly push myself…and that I was never good enough.

The fact that I was convinced that I shouldn’t have gotten cancer was a recurring theme early on in this blog–I was convinced that I must have done something wrong, even when I tried so hard to do my best.

I was also ashamed. Cancer, I felt, opened my life up to judgment by others.

Getting myself out of that funk took serious work. It meant rewiring my brain and allowing in the same kindness and compassion for myself that I allowed for others. At the same time, I reminded myself of a quote by author and humor columnist Dave Barry: “A person who is nice to you, but rude to the waiter, is not a nice person.” I prefer to interpret Barry’s words in this way: I cannot be genuinely kind and non-judgmental to others until I’ve learned to be so to myself.

Cancer gave me perspective to see how much I needed compassion from myself.

But how do you do that when you’ve spent your life pushing yourself, not accepting excuses? It wasn’t until I hit the lowest low that I ever experienced that I learned to dip into unadulterated compassion for myself. I imagined who I was as a chemo patient–skinny, bald, dehydrated, vulnerable, frightened. And suddenly felt it: that overwhelming desire to wrap my arms around that version of me and protect it.

And while that was “cancer me”, I realized that same version of me was the scared person inside that I had always bullied with perfectionism and accusations of not being good enough. This was who I really was, in need of and deserving of gentle holding.

It took a life threatening illness to make me realize that I deserved kindness and compassion. I believe that you are deserving of the same. Do something today to prove it to yourself.