A Mini-Guide to Surviving Chemo Brain; or, “Wait, what were we talking about?”

While it’s not my intention to write advice columns for breast cancer patients, because I posted ‘getting through chemo‘ tips, I might as well follow up with what I’ve learned about handling the memory and focus issues associated with chemo brain.

Note, first, that chemo brain may not be all chemo. There may be various factors involved (chemo, tamoxifen, onset of menopause, even the tumor itself) and it’s difficult to tease out which one is the main culprit. Be that as it may, it still sucks when you’re standing in your closet, wondering why you went in there…for the tenth time today.

I put a lot of blame for this lack of focus and fleeting short-term memory on the estrogen-blocking drug tamoxifen, which is given to women with hormone receptor positive tumors. I can’t tell you how many physicians have assured me that it’s a “great drug” for decreasing risk of tumor recurrence. And an equally large number of women who have told me that their lives improved after they got off it.

Regardless, for now chemo brain is a fact of my life, so in the spirit of accepting what I cannot change, here are my best practices for making sure that chemo brain doesn’t get me fired from my job:

At least I know it’s there…
  • Write down your thoughts. And do it immediately. I’ve actually lost thoughts as I was scrounging for a writing utensil. If I have to remember something, I put it in writing, often on a sticky-note that goes on my computer monitor or bathroom mirror. Some place that I look at multiple times a day. I do this to excess, with notes everywhere, but it works. It also decreases my stress levels because I know the thought has been recorded.
  • If you can’t write it down, repetez! Repeat it in your head. Sounds obvious and overly simplistic? Perhaps, but you only need to do this until you either no longer need the thought, or get to a place where you can jot down a note. Of course, I ruined the last part of a meditation retreat for myself because a load of great post topics popped into my head and I had no place to record them. On the bright side, I realized I could juggle seven items in my head for a half hour if I concentrated on them!
  • Narrate what you’re doing. I’ve had to resort to this, especially when working on a multi-step process where accuracy counts. Yes, I’ve made mistakes on the “I-must-be-smoking-crack” scale, and this is often one of the best ways to avoid that. When I hear myself say what I’m supposed to be doing, I stay on task and am less likely to wander off.
  • Avoid distractions. This is probably the most critical piece of advice I can offer. Distractions are death to my thoughts because I go down rabbit holes before I’m even aware of what happened. The Google page of my Firefox browser at work suggests articles to read based on my browsing history, and let me tell ya, there are few feelings worse than suddenly realizing that you are lost deep in an article on body language when you should have been finishing up a report that’s due in a hour. How’d that happen? Anything that breaks my concentration — even a tickle of a distraction — can sidetrack me for minutes before I come to my senses.

Bottom line is, stay present. If there were one general rule of thumb to preserve your functioning while in the grips of chemo brain, that would be it.

The above hints may seem obvious, but I went through a lot of frustration until I accepted that my brain had changed and it couldn’t be ‘business as usual’ anymore. Once I started working around my limitations, things got a lot easier.

Getting Through Chemo

My previous post was about the side effects that I experienced from my first chemotherapy infusion for breast cancer. However, side effects are specific to the individual and depend on a variety of factors. My greatest concern was that someone about to embark on chemotherapy would read about my experience and immediately assume that it would be theirs, also.

So I’m aiming this post directly at newly-diagnosed breast cancer patients, in an effort to provide helpful (I hope!) suggestions for getting through cancer and chemotherapy. The below is not supposed to be an exhaustive list — rather it contains random things to consider (in no particular order):

You’ve got this.
  1. You can get through this. And I don’t mean that in a “rah-rah” way like a well-meaning friend who makes it their personal crusade to make sure you “think positive” for a positive outcome. That’s BS. But please know that there are medications and suggestions available to manage chemo symptoms, with a lot of advances made in the last decades, and you should make use of all of them. Ask your oncologist.
  2. Take it step-by-step. If there’s one thing that a cancer diagnosis is, it’s overwhelming. Once you get past the initial shock, there may be more diagnositics to run and a host of treatment options to consider. You don’t have to take on everything at once. Sit down. Breathe. Clear your head.
  3. Know your sources. Everyone and their cousin may have some miraculous piece of advice that they claim helped someone. Great for them. Everyone’s situation is different, so stick with reliable sources. This will generally be your healthcare providers, but if you feel you need to, get a second opinion. Or a third one. It’s your right because it’s your health. And tread gingerly through the internet!
  4. Everyone’s situation is different, as mentioned in the point above. It’s worth repeating, again and again. As a matter of fact, a number of us have made this our mantra. I have suffered more from the fear of going through what someone else did than I actually did from the thing itself. That says a lot. You have a right to your own experience so feel free to protect it.
  5. Stay informed. Once you get reliable sources, keep on top of information related to your condition. Too stressed or tired? Ask a close friend or relative, or in the absence of those, make use of the nurses at your cancer center. There is a push in medicine today to fully support the patient, and that includes providing information.
  6. Ask for/accept help. If someone offers to clean your kitchen or prepare a meal, take them up on it. I had a mom offer to pick my son up from school on the days after my chemo and it made a huge difference! Talk to your healthcare provider about getting assistance at home if you don’t have anyone to help you.
  7. You didn’t do anything to deserve this. Let me be the first to absolve you of responsibility. People do not purposefully bring cancer onto themselves, nor do we know enough about what causes most cancers to make you liable for your disease. Someone suggesting that? You have my permission to kick them in the teeth. (Just kidding! Don’t do that; save your energy for recovery.)
  8. Prepare your area. A bedside table with all the things you’ll need to ride out chemo side effects at the ready will make things easier. I used a chair without a cushion to keep necessary medications and a glass of flat ginger ale on hand.
  9. Set your boundaries. You may not want visitors/advice/your aunt’s casserole and that’s okay. If you have a partner or friend to act as a gatekeeper, perfect, but if not, feel free to pull the cancer card and ask people to leave you alone, guilt-free.
  10. Make use of freebies. Ask your nurses about organizations or individuals who offer services at low or no cost to cancer patients. I was told of a salon that provided free head-shaving, wigs and scarves and scarf tying lessons, and of an aesthetician who gave free facials. There is a program called “Look Good, Feel Better” that provides high-end makeup and application tutorials, including helpful things like drawing on eyebrows. See what’s available in your area.
  11. Distract yourself. And do so with pleasant things, whether it’s watching rented movies, taking a drawing class, going for a walk. Be mindful as you’re doing so, truly enjoying each moment. Your cancer center may have various activities available for cancer patients.
  12. Breathe. I know I said this before, but it’s worth repeating. Breathe.

I’ll see you on the other end of treatment!

Chemo Side Effects: My First Infusion

IMPORTANT: The effects of chemotherapy vary from drug to drug and patient to patient. My side effects may be very different from what others experience. If you are about to start chemo, please consider not reading this post, as I do not want to cause you unnecessary anxiety. You have the right to enter into treatment without fear or preconceived notions that may be irrelevant to your situation! Instead, read THIS.

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This is one of those “if you wanted to know but were afraid to ask” posts. It’s not meant to scare anyone. Chemotherapy has a frightening reputation, but often what really unnerves us are the unknowns. I took a lot of notes on my treatment experience and wanted to share these in case anyone was curious. This is a much longer post than usual, so kudos to anyone who gets to the end!

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Today, April 27th, marks the two-year anniversary of my very first chemotherapy infusion for treating my triple-positive breast cancer. I was told that the first chemo was often a shock to the system and could be exceptionally hard on the body. This was true for me — sort of — because the nature of the side effects changed from one infusion to the next. My reaction to the first infusion resulted in the greatest variety of effects, a number of which didn’t significantly reoccur with subsequent infusions, even though fatigue became much worse by my sixth and final chemo session.

In addition, when I started I was not prepared to manage all the side effects effectively, whereas with later infusions, I knew better what to expect. I was most fearful of nausea as I had been warned that if I started vomiting it would be difficult to stop and might necessitate a trip to the Emergency Room. This was not a comforting thought. I was prescribed anti-nausea medications but even they had side effects, so I resisted taking them. Eventually, as mentioned in a previous post, I switched to CBD and it provided enough relief without any noticeable side effects, calming my fears. I was grateful that I lived in a state where it was freely available.

Drip, drip, drip…

My 4-hour-long chemo infusion session consisted of :
1) Herceptin
2) Benedryl & steroids
3) Taxotere
4) Carboplatin

This was in addition to steroids that I had to take starting from the day prior through the day following the infusion. That’s a LOT of medication for someone who was unaccustomed to taking drugs at all! Because of this, I can’t say my side effects were all attributable to the chemo drugs themselves, so this should be considered a run-down of the entire “chemo experience”.

4/27/2017:
This was the day of my first chemo infusion at my cancer center, following check-in and bloodwork. I received my I.V. seated by the nurses’ station so they could watch for adverse reactions, but I tolerated the infusion well. There were no acute side effects except sleeplessness from the steroids. I was off to a promising start!

4/28/2017:
I returned to the cancer center for a Neulasta injection (stimulated white blood cell production, which took a hit from chemo) and took Claritin (anti-histamine) prophylactically as it helped with potential bone pain from the Neulasta. No nausea, but I noticed that my stomach felt better if I ate more frequently. Finished up my last steroids but they were still affecting my sleep.

By that evening, things were looking surreal, like I wasn’t completely here.

BEWARE! Great food…but not a couple of days after chemo.

4/29/2017:
My stomach started feeling funny, particularly towards the end of the day. I still wasn’t sleeping well, and I had difficulty standing in place. And that afternoon I made what ranks as one of the biggest mistakes of my life: for dinner, I ate an entire package of Palak Paneer (Trader Joe’s). It was Indian food made with spinach, paneer cheese and spices. I was hungry, yes, but it was a foolish move. I would pay for it.

Shortly after dinner, I was overtaken by a wooziness and began regretting my dinner choice. After some fearful indecision, I took an anti-nausea pill (ondansetron) and propped my head up in bed.

4/30/2017:
Things started to get serious. My energy levels were dropping, and by the evening my stomach was on fire. I felt like I’d been hit by a truck. Putting my head down made me feel sick so I tried to sleep sitting up in bed.

That night was horrible. I took two different anti-nausea medications (four hours apart), but confused their order, so the pill I took first, I should have taken second (prochlorperazine, an anti-psychotic (!) drug with anti-nausea properties). Ho ho ho. Yeah, don’t do that. My dreams were colorless with a gritty texture, like someone had smeared coffee grounds on them. My nausea didn’t improve and I paced back and forth in the living room until enough time had passed so I could take the ondansetron pill that I should have taken first. Death was looking like an attractive alternative.

5/1/2017:
I was deep in the “real” side effects by now. I had severe fatigue and a woozy stomach, no appetite, bone pain and headache (probably because I couldn’t get coffee down). Most of this day was spent in bed. I tried taking CBD to help with the nausea, since I was getting constipated from the chemo and anti-nausea meds. I got the dosing wrong on the CBD, fell asleep, waking with a gasp because I thought I’d stopped breathing. Disconcerting, to say the least. For the record, I figured the dosing out by my second infusion.

Chemo dries everything out!

5/2/2017:
My fatigue was starting to improve and my appetite was coming back, but my stomach couldn’t handle food (fun fact: chemo made the lining of my GI tract slough off). It was a frustrating situation: I was hungry but unable to eat. My throat felt raw and my skin was getting chapped. The inside of my mouth was drying out and it felt like there was gunk on my teeth even after brushing them.

Warning, TMI! I, the multi-decade vegetarian, was officially constipated. This was an miserable feeling. It took an hour of straining on the toilet to finally produce a post-chemo bowel movement, at which point I decided that I’d rather starve than go through that again. With subsequent infusions, I was able to tweak my diet and avoid a repeat. I can’t imagine going through this on a regular basis!

5/3/2017:
Finally! I got a good night’s sleep, although could have used a few hours more. My lips were severely chapped and my throat felt so swollen that swallowing was difficult. I tried eating crackers but as tender as the inside of my mouth was, it felt like I was chewing glass. Luckily, a salt-and-baking soda mouth rinse provided a little relief to the soreness. There was a lot of gunk on my teeth, probably because my GI tract was in rough shape and I was experiencing reflux.

5/4/2017:
This was my first day back to work following the infusion. The intense chemo fatigue had let up, but my throat was still sore, mouth raw and lips chapped. I was getting nosebleeds. I had a huge headache in the morning, but it eased after eating, which still required very soft and bland foods.

5/5/2017:
There was noticeably less mouth and throat pain. Still had a headache and chapped lips along with an itchy scalp. By evening my saliva had a strong bitter taste, making food less palatable.

5/6/2017:
My tongue stuck to the roof of my mouth overnight! Overall, my mouth and throat were feeling better and it was easier to swallow, but my skin was very dry and itchy, and my scalp tingled. Still, I was feeling much more normal, except that my saliva was still unpleasantly bitter.

5/7/2017:
Skin and lips were still chapped and I was having nosebleeds, but it was easier to eat crunchy foods. My saliva was still bitter but it didn’t seem as bad when I was eating. Swallowing was getting easier to do without feeling like I was taking air into my stomach, something that I realized had caused a lot of discomfort in previous days.

5/8/2017:
Most of my energy had returned. My skin and lips were dry and irritated and I had a runny nose in addition to nosebleeds. Now my mouth was able to handle carbonated drinks along with a more normal diet full of crunchy veggies. This was the first day that I was able to do a workout with weights, even though I had to keep it light.

5/9/2017:
Lips were still chapped and the inside of my mouth stuck to my gums at night. But finally I was able to eat spicier foods and the taste of my saliva had significantly improved. I was continuing to have sleep issues but I’m unsure if this was a leftover side effect or just a general reaction to the anxiety associated with cancer treatment.

5/10/2017:
Still chapped lips and dry mouth, but now I could eat whatever I wanted to with no discomfort.

5/11/2017:
My nose was bleeding much less, but — surprise, surprise — my hair started falling out. As a matter of fact, it was falling out on schedule, as I’d been told to expect hair loss about two weeks following my first chemo. So much for escaping that side effect.

5/12/2017:
Hair was coming out more rapidly. It probably wouldn’t have been noticeable to a bystander, but when I ran my fingers through it, I was left with a handful. I tried not to touch it so that I could get through my workday without creating bald spots.

5/13/2017:
Long hairs were dropping all over the place. I decided to cut my losses and have my husband clip all of it off. My next chemo session not for another five days, so I still had time to enjoy feeling good.

At this point, I had fully recovered from the chemo. In all honesty, the week after my first infusion I had no idea how I could go through it five more times. But with three weeks in between chemo sessions, I had enough of a chance to feel human again. In addition, while I would still have GI tract issues and experience severe fatigue with subsequent infusions, many of the above listed side effects didn’t return. I did, however, experience new ones: water retention, loss of taste, constant tearing of the eyes, very runny nose, loose teeth and the like.

This will pass.

My first infusion was a great lesson in being patient and taking things as they come. The side effects don’t happen all at once; it’s a cascade, with one rising up while another ebbs. When in treatment, the best you can do is to stay in the present and ride them out like waves.

The most important take-home point? Chemotherapy is doable. That doesn’t mean it’s a pleasant experience, but it’s one you can get through.

Between the Past and Future: A Cancer Survivor’s Perspective

I attended a workshop on cancer and stress given by the social workers at my cancer center. Since I like to take advantage of every opportunity to explore what’s going on inside my noggin I was looking forward to the presentation, but I didn’t realize that I would be offered a curious vantage point at the same time.

Sitting in the front row as I always do, I was joined by a woman who was awaiting the results of her second breast tumor biopsy; her first had confirmed cancer but another tumor was discovered shortly thereafter.

She told me about her racing thoughts, lack of appetite, inability to sleep — all those symptoms of intense stress that I also experienced as I awaited diagnosis. How odd it was to revisit this through her, now that I had a comfortable seat on the other side of that experience.

I commiserated with her, briefly offering up my own experience, and assured her that some of the anxiety would mellow once she had a definitive diagnosis and accompanying treatment plan. That’s the only thing I assured her of, knowing the nature of cancer, but I hope it gave her comfort seeing how far I’d already made it on the cancer journey.

And then, ironically, I realized that the woman sitting directly behind me was someone I had sat next to during one of my chemo infusions in 2017. I re-introduced myself, and while she didn’t remember me, she said she’d been through so many chemo sessions that it was hard to differentiate one from the other.

When I met her in 2017, she had hair and a good dose of energy. We talked about our kids (hers were grown) among other things. She was being treated for lung cancer but we didn’t dwell on the particulars. That’s not generally what you talk about during chemo. You gravitate towards non-cancer topics.

Things don’t always turn out the way we predict they will.

But now, she wore a ball cap to cover her bare head and walked with a cane. She seemed frail and was accompanied by a caregiver — several years of cancer treatment, not to mention the cancer itself, will do that to you. I’m not sure what her prognosis was, but given what I knew about her and the fact that she was still doing chemo, it probably wasn’t favorable.

There I sat, trying to stay present, next to my past and in front of my potential future. I had the good fortune of surviving the one and a decent chance of escaping the other.

There is no crystal ball with which we can gauge the future, deciding whether or not we like it, and if not, opting out. So here’s to making the best of the time that we have.

Passing Days One Pill at a Time

I have beside my bed a 7-day pillbox. Since I avoid taking pills whenever possible, opting for alternatives to medication, there is only one lonely but mandatory pill in each little box corresponding to the day of the week.

That’s tamoxifen, a final remnant of breast cancer treatment that I’ll be taking for years to come.

I observe the passage of time by the disappearance of the daily pills. They mark the days that I work and the days that I don’t (weekends and Wednesdays). Sunday mornings the pillbox is full. The work week looms before us bringing early mornings and sleepy heads. Wednesday provides a brief respite with an extra hour of sleep and a day crammed with personal errands at home rather than office work. When Thursday rolls around and I return to my job, only the Friday and Saturday pills are left until it’s time to refill the box again.

Days melt into weeks, weeks into months. Make them count.

The weeks seem to go by more quickly as I get older. Time feels slippery and days fuzz into the background. Weeks pass into months as pills are consumed. I’m unsettled by the possibility that when my decade of tamoxifen ends, I’ll realize that I spent ten years waiting the pills to finish and missing what was going on in the moment. It frightens me into wanting to distinguish this week’s row of pills from the next, to make next week different from the last.

I pause as I plop a fresh row of pills into their designated boxes. Could I be kinder to those around me? React more calmly? Sleep better? Support the needs of others more? View my shortfalls with compassion?

Every morning I am able to get out of bed and place my feet flat on the Earth. That is something to be very grateful for, no matter how difficult my week. I represent the fortunate ones who have been given the opportunity to remain alive and present in “now” and appreciate every precious day more than the one before.

Another Hairy Situation

It wasn’t until almost a year and a half after my last chemo that I finally got a professional, high-caliber haircut. After an adult life filled with boring medium-to-long hair in a ponytail, this was an about-face: a short and very stylish ‘do.

I don’t think I would have ventured to try this if I hadn’t been pushed into it by chemo. Then again, cancer pushed all my boundaries further than I would have gone on my own. I’ve always played it safe, but with cancer, there was no “safe”.

When chemo took my hair, I had no say in it. As the hair grew back, it did so slowly and in a pattern that was not attractive. Nothing I could do about it but be patient.

Front shot of my awesome new pixie cut! The hair on top is full and feels thick. I love the look!
Back view. This was the part of my head that unnerved me in the middle of the night. It felt so bare and brought back all sorts of scary feelings.

But in 2019, I was in charge and could decide at what length I wanted to keep my hair. I’d been surprised by how much I liked the new “me” with a short style, so I thought I’d be adventurous and go even shorter. My hairstylist happily obliged and this past week I got a full-on pixie cut that was absolutely adorable. It felt great to be calling the shots and reclaiming myself and my look.

But something unexpected happened that night. I woke in the darkness, unsettled with a touch of panic. My head felt bare, like my hair had crossed the threshold between short and “omigodthatisTOOshort”. For a split second, everything felt out of control again.

It took a bit to calm myself down in the pre-dawn hours of the day. I had wanted to be brave and cut my hair shorter, but it elicited those old feelings of the unknown. Wait, I reminded myself, all of this was “known” now. I knew my hair would grow back again. Add to that, several days before, I’d had a mammogram that confirmed I was in remission. So there was no need for the fears.

Be that as it may, it wasn’t so simple to let the feelings go. My hair carried powerful associations that had been seared into my unconscious mind. Losing locks to chemo meant relinquishing a part of me. While I thought I already understood its importance — I’ve written about it in a number of posts — it wasn’t until that night that I realized how tightly my hair was wound up in all those memories and sensations.

You’d think that once the hair grew in, everything would return to normal and there’d be nothing more to say about it. Not so, I’m finding, as I get hit in the face by these unexpected reminders of exactly what having cancer meant to me. Sorting everything out seems to get more complicated the further away I get from treatment. Who knew survivorship could be such a head trip?

View from the Waiting Room

I am weirdly at ease.

Today is my 3-D mammogram, the one that will either confirm that I’m in breast cancer remission or that I’m going to have another rotten year (or more). Two years ago, around this time, I was completely racked with anxiety in preparation for the diagnostic mammogram and ultrasound that would detect my cancer.

I feel placid. Granted, I do self-exams on an almost-weekly basis (it’s a survivor thing) and was checked out by my oncologist early last month, so I know there’s nothing palpable there, although the 3-D mammogram could pick something smaller up. But I’ve also matured in my ability to let go of thoughts that drag my mind away to wild extremes, and instead accept what is happening in the moment.

I admit that I’m holding off on travel and hair expenses until after my mammogram, because if my cancer comes back, the money spent on them would be better put towards treatment. Neither a cross-country flight nor an edgy new haircut would be in the cards for me.

If I could have one superpower, it would be to remain calm in every situation.

Another reason for waiting on making plans? It’s because the agony associated with desperately clinging to the desire to be cancer-free and then having those hopes dashed is excruciating. So for the moment, hanging around in limbo with less emotion invested in an outcome provides more comfort.

I started meditating in an effort to free myself of expectations. Today I am able to make space within myself to hold the possibility of both remission and recurrence, and then to think about neither.

So I sit in a comfy robe as I wait for the radiologist’s assessment, feeling the warmth of the cup of tea in my hand. I am here now, focused on the present instead of potential outcomes. And this is the most peaceful place to be.

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Shortly after I wrote the above, the radiologist came in to confirm the good news. Another year, another clean bill of health.

Last year when I got the “all-clear” I was still finishing up treatments. And the news felt like a huge release.

This year, I felt much calmer. Not gonna lie — somewhere inside, try as I might to release all expectations, I still expected to be okay. But I was able to not focus on the outcome of the mammogram and instead go with the flow of the day. This is a first for me, so my ability to maintain that level of calm may be more significant than being cancer-free.

Oh, who am I kidding? Being cancer-free kicks ass!