“If you want a happy ending, that depends, of course, on where you stop your story.”
Orson Welles director, actor and producer
Honestly, this blog is supposed to be funny, but sometimes it’s hard to get there.
I am a cancer survivor. You cannot imagine how good it feels to write that. This blog was established to help me document my journey, process my experiences and, ultimately, inch away from thinking of myself as a cancer patient and towards being a mindful, peaceful and accepting (that’s a tough one!) creature on this Earth. Be warned, some of my posts are self-indulgent and unnecessarily wordy; I have much respect for anyone willing to slog through them.
Right now, this blog is anonymous: I need to stumble through my feelings, complain when I feel like it and be blunt when necessary — and I need a safe space to do it without fear of judgmental glances. While my goal is to keep this light-hearted, I realize that I have the pleasure of being a survivor and chuckling about my cancer experience; there are many who are not granted that opportunity. Writing this blog is a privilege.
Cancer sucks. It’s an indiscriminate spectre that has haunted the lives of practically everyone at some point, whether relatives, friends or ourselves. For me, cancer cannot pass into faded memory quickly enough, but at the same time, I am infernally curious about the disease and how it has changed me.
So here are my facts:
In early 2017, I was diagnosed with triple-positive (estrogen+, progesterone+ and HER2+) breast cancer. The lump was 1.6cm in diameter, removed at the end of March, along with three sentinel lymph nodes that were revealed to be unaffected. Chemotherapy (Taxotere & carboplatin) started a month later and lasted the entire summer, 6 hefty courses, one every three weeks; adjuvant therapy (Herceptin, a monoclonal antibody) also started at this time, but went for 17 courses, ending in April 2018. Daily radiation treatment lasted six weeks through autumn of 2017. A 3-D mammogram in February 2018 showed nothing, in a good way. That marked my first year without the tumor.
I wish I’d been able to write in 2017, but my head wasn’t there. I was not processing, I was existing and enduring. After my final Herceptin infusion, my port was removed and I turned around to see what had happened. It took several months of writing before I tossed out my first post in September 2018, privately at first, and then, “Hello, world!”
It’s going to be a bumpy, unpolished ride. Bear with me.
During a recent mindfulness retreat, we did a walking meditation outside.
The idea was simple: walk slowly, as if taking steps for the very first time. Sense how it feels to shift all your weight onto one foot as you lift the other, then extend that lifted leg, place that foot down and shift weight onto it as you lift the other leg. Rarely do we slow down enough and realize how complex a movement that is, we’ve been doing it for so long.
As I walked along the paved path, I moved fluidly. There was nothing in my way and the pavement was flat. Perfect to move me along even though I was taking extra care with my steps.
But as I came up to the lawn and stepped off the path onto the grass, I sensed a change in my movement. The lawn was bumpier, clover blossoms all around with honeybees that I wanted to avoid. My steps slowed even more as I trod gingerly.
The living, growing lawn required more balance and called for increased attention to what I was doing.
As I made my way through this walking meditation, I was intrigued by how my experience differed between the two surfaces. Our human-constructed paths are designed to get us places and purposefully point us in the direction that we must go. The hard pavement requires less thought about balance and it is usually clear of hidden obstructions. As a result, we pay less attention to what we’re doing in the moment and more to replaying scenes from the past or what’s to come in the future. We whiz through, perhaps arriving at our destination with little memory of how we got there.
But the grassy blanket laid down by nature gently commands us to observe the journey. That path has many possibilities and sometimes we don’t know exactly how we will travel when we set out. We give it more thought as we progress, perhaps changing direction several times, but being aware of the reasons for doing so. We may arrive at our destination with a fresh mind and greater appreciation of the journey.
Certainly, we cannot always leave the paved path. We have responsibilities that must be met and those may require efficient travel in the shortest time possible. But what a shame if we never take the opportunity to wander off and slow down our pace, delighting in where we are right now.
Most of the photos I’ve posted that I’ve taken myself were from my cancer treatment, so for this Mother’s Day I wanted to share something unrelated to the disease and filled with natural beauty.
There’s not much time left.
It has been an unusually rainy and cool spring in my corner of the world. Whereas in recent years, by now plants are drying up on the hillsides ready to provide kindling for late summer fires, in 2019, we are still getting rain showers. In fact, we had several today.
As a result, the hills and canyons are multiple shades of green. But it’s not simply the thickness of the green that makes me crane my neck as I drive down the road — wildflowers, encouraged by the rain, are spreading across the landscape. Masses of orange nasturtiums drip down hillsides as if they were poured out from above. They are stunning against the greenery.
But I am most in love with the little yellow flowers that have transformed the canyons into an impressionist painting, where an artist practicing pointillism decided she had too much yellow on her palette and needed to get rid of it somewhere. The effect is breathtaking.
Now, this may not seem like anything remarkable to you, but I am filled with joy to see so much color and beauty in the plantlife, untended by human hands and perhaps guided by something far more divine.
Eventually, summer will take over, the rains will stop and the brown will return. These glorious colors may portend danger as the heat intensifies and the plants become fuel. So I will enjoy them now as a gift to the senses — it is not that these flowers are beautiful to me in spite of blooming only for a short time. They are beautiful because they bloom only for a short time. Happy Mother’s Day!
“I laugh when I think how I once sought paradise as a realm outside of the world of birth. It is right in the world of birth and death that the miraculous truth is revealed. But this is not the laughter of someone who suddenly acquires a great fortune; neither is it the laughter of one who has won a victory. It is, rather, the laughter of one who, after having painfully searched for something for a long time, finds it one morning in the pocket of his coat.”
Thich Nhat Hanh
Before my very first all-day silent retreat, I bumped into my meditation teacher in the hallway. I had just gotten an “all clear” mammogram following a year of breast cancer treatment and I was so excited.
She said hi to me, so I happily related my test results, only to have another meditation teacher poke her head into the hallway and sternly shush me. This was, after all, a silent retreat.
At the lunch break, that shushing teacher gave me a gentle hug and handed me a sweet note of apology. None was necessary — I hadn’t been offended by having her correct me.
Weeks later, I happened to see her again (not at a retreat!) and she explained how she had felt during her very first retreat when no one would look at or speak to her, because, of course, they weren’t supposed to. She admitted that she felt slighted at that time, and that’s why she hadn’t wanted me to feel the same way after she quieted me. She was so darling and sincere, I couldn’t help but hug her again.
This is something I’ve thought about: at many of these retreats, when we practice noble silence and custody of the eyes, there is a tendency to adopt a dour expression. We’re working hard to concentrate and turn inwards…perhaps a bit too hard. It’s easy to lose that lightness and joy of mindfulness if we’re being too serious.
At the next retreat I attended, that same teacher was teaching mindful yoga. We were on all fours and instructed to raise up our left arm…then our right leg…and our left leg…leaving a few of us confused since levitation hadn’t been part of the class curriculum. The teacher chuckled and said that we needed to keep a sense of humor about our practice.
I like that idea. And that’s why now when I go to meditation retreats, I bring along my thick socks with panda faces and cute little ears. Life hasn’t been easy and it certainly hasn’t gone as planned. But as I sit there amongst all the other meditators, I smile knowing that I can still find humor in this world.
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:
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.
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 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.
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.
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!
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.
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.
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.
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.)
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.
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.
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.
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.
Breathe. I know I said this before, but it’s worth repeating. Breathe.
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.
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!
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.
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.
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.
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.
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.
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.
These are the most difficult mental calisthenics I’ve ever done.
The most frightening part of anxiety for me is that when scary, intrusive thoughts hit, they are right in my face. It feels as though there is no buffer zone so they come at me fast. I am highly reactive — nausea, cold bowels, rapid breathing, sweating, buzzing head. No opportunity to pause and consider a response. I am thrown into “flight” mode.
I don’t get panic attacks the way others have described them: heart beating so hard it feels like it’ll burst out of your chest, or hyperventilation to the point of getting lightheaded, even passing out. But I still feel anxiety intensely and physically.
So my practice lately has involved allowing stressful thoughts into my line of sight, but softening them, so that they appear blurred and more distant.
I establish this by immediately focusing on my body sensations as soon as I’m aware of the physical sensations of anxiety. That means feeling down to where my skin touches my clothing and focusing on the sensation of pressure on my seat and feet (if sitting) or the entire length of my back (if lying down).
Once my attention in on my body, I revisit the stressful thought, but as if squinting with my “inner eyes”, sometimes looking at it from the side instead of head on. I acknowledge its presence, but fuzz out the details, and most importantly, I keep it at a distance from me so that I have some space. Then I bring in deep breaths, slowing them down and allowing them to calm me as much as possible.
This is not even remotely easy. On some level, I’m still reacting to the thought and do experience a fear of bringing it closer to me. But the soothing nature of the breath helps temper my reaction. I think of this as exposure therapy, a form of cognitive behavioral therapy, except where everything takes place inside my head.
Lately, I’ve been having more success with this, particularly when I wake in the middle of the night, which is one of the most frightening times for me to experience runaway anxiety. This self-comfort would not be possible without established meditation and relaxation techniques — I’ve used the breath to soothe myself through cancer diagnosis and treatment, but the great majority of my meditation practice takes place when I am not stressed.
That fact, along with consistency in practice, has been critically important to me. In order for the breath to serve as an effective anchor, it must be recognized as one. And that means building up “anchor-like” peaceful associations over time so that the link is not easily broken.
None of this is a quick fix. But as with many things that are not quick fixes, the process of achieving success is part of the success itself. And that is a very reassuring thought.