9 minute read.
Chemo is behind me!
I haven’t written a post like this since February. I wanted to tell all of you what chemo was like, to send you postcards from inside that mysterious, scary, monumental experience. But it turns out I didn’t have the energy to write & edit blog posts during the fog and illness of chemo. I ended up mostly instagramming my experiences since instagram is faster and easier. You can see those at @dinosaurgerms if you like.
Overall, when I think about my chemo experience, I feel relieved. I didn’t get the side effects I feared the most. My fingernails didn’t fall out and I didn’t get neuropathy (nerve damage in the hands and feet, often permanent). I was never hospitalized. I tolerated the treatments very well – I feel very, very fortunate.
It was still really shitty though, and I am glad it’s over.
I had my last chemo infusion on May 8. The last round was the hardest. The nausea got worse with each round and by round 6, it lasted for weeks. I was miserable. I feel like I really “finished” chemo at the end of May, when my side effects started to lift. I had to cancel my celebration plans (a trip to the Korean spa with friends, and a sushi dinner with Brian) because my immune system was so compromised my oncologist didn’t want me to do either activity. My mom and brother brought over a lemon cake, complete with birthday candles, to celebrate though!
It’s a huge relief to not be sick from chemo anymore, although I still have symptoms. My blood counts are low. I wake up 3-5 times a night from hot flashes and have a hard time falling back asleep. I’m still anemic, so any physical activity makes my heart pound and makes me short of breath and lightheaded. Overall I feel great though. I am so, so happy to not be sick anymore!
I am feeling some cognitive side effects: memory loss, and some mild but frustrating verbal impairment. Before, words were there in my mind. All I had to do was open my mouth and they would flow out. Now, I open my mouth and the words just aren’t there. Sometimes I forget the name of something (a movie, a place, or a person); other times I just have nothing to say. It’s much worse when I’m tired. Another reminder to rest.
My hair is growing back. I have a few little armpit hairs and a crop of fuzzy baby hairs all over my head. My eyebrows & eyelashes hung on until the last round, and then about half of them fell out. I bought a bottle of castor oil which is supposed to help with hair regrowth but I keep forgetting to rub it on my eyebrows and eyelashes at night.
I still have fatigue which has been the hardest part of this whole experience. My best hours are in the morning. By the afternoon I just have nothing left and I have to lay down and rest. Because of this, the useful part of my day is about 5 hours long, and I always feel like the clock is ticking to get everything done in the morning (work, housework, e-mail & texting, exercise, errands, doctor’s visits) before I run out of energy. It’s a lot of pressure.
I’m working 2 ½ days per week. To the old me (someone who prided herself on her ability to work hard) this would have been nothing. This new me is completely spent and exhausted at the end of two full work days. Still, it feels good to get dressed, go somewhere that isn’t the cancer care center, and see people who are not doctors.
I am trying really hard to not fill up my calendar. It is a real struggle. I want to see friends and loved ones, as I’ve basically been a shut-in since January. But I only have energy for socializing about once per week, on top of working and doctor’s appointments. Guess what? As soon as my side effects lifted, I started cramming in 2-3 hangouts per week and feeling spent and depleted as a result.
I think each of us have to learn the same life lessons over and over in different contexts. One of mine is prioritizing my energy and saying No. But how can I say No when the whole world is beckoning me? I finally have energy to see friends – I want to go outside! It’s summer! Let’s have lunch! Yes!
But – I have been changed by this experience, and my body has been taken apart at a cellular level. I do things like write “DO NOT SCHEDULE” in my planner, set intentions in my journal to only make one social commitment per week, etc. Then I break my own intentions, overschedule myself, and pay the consequences by feeling completely wiped out, usually followed by a crying meltdown. It’s hard because I do need to see friends and do fun things. The cancer isolation is real. But I haven’t yet figured out how to balance this with my body’s other needs and work. I begin again and try again. I think I will have to keep learning this for a long time.
I’m seeing a nutritionist who refers to the year after cancer treatment as the “recovery year”. She says it takes a full year for the body to repair itself on a cellular level and to build energy back up again. She cautions her patients against expecting that they will be back to normal soon after treatment. My treatments will be done at the end of 2019, if everything goes to plan. So 2019 is my treatment year, and 2020 will be my recovery year. I try to remind myself of this.
Doctor’s appointments, which slowed down after chemo, have begun to pick up again. The frequency of these doctor’s visits still astounds me. I went from being someone who mostly didn’t need to go to the doctor and went maybe once every two years, to being someone who has a separate Google calendar for doctor’s visits so I can coordinate rides and company with my mom and partner.
Now it’s on to the next phase of treatment.
Every three weeks until December, I will get a 2-hour long infusion of the drugs Herceptin and Perjeta via a drip inserted into the port in my chest. These targeted maintenance drugs prevent cancer cells from growing. They don’t attack your whole system like chemo. I had my first Herceptin & Perjeta treatment two weeks ago. I didn’t notice any side effects, but I was still recovering from chemo side effects – so it’s hard to say how the drugs affect me. These drugs can cause heart damage which is scary. I will be monitored with an echocardiogram every 3 months.
I start radiation treatments on Monday. I’ll get these treatments five days a week for six weeks. A team of nurses will place me inside a machine that aims radiation at a targeted area on my chest, clavicle, and armpit, where the risk of cancer recurrence is highest. Radiation damages all of the cells, but normal cells are able to recover, and cancer cells aren’t. Radiation treatments terrify me – in normal life, you’re supposed to avoid radiation, not get it aimed directly at your chest.
A lot of this experience is about managing fear.
After my diagnosis, I threw myself into researching and educating myself. And I’m glad I did – it helped me ask the right questions, find doctors I (mostly) trust, and advocate for myself and what I wanted.
But now, I have reached a place where I just don’t want to know. I can’t make it through treatment while consuming so much information about the negative impacts of treatment. For the sake of my mental health, I have stopped researching and reading about cancer. I try not to think about things I have read, for example, statistics about radiation treatments causing secondary cancers, or damaging the heart and lung. This doesn’t happen to everyone, so why worry about what hasn’t come to pass? It’s hard to un-remember things I have read though. You can see why depression, anxiety, and PTSD are so prevalent among cancer patients.
I can’t avoid cancer completely, of course. I get cancer bills and insurance authorization letters almost daily, I follow cancer instagram accounts now, and my inbox is full of things like breast cancer support network email digests and oncology research updates. Some of these are incredibly triggering – especially when someone in my support network dies.
It’s hard to navigate this. I’m curious about new research that might be relevant to my body and health. I appreciate being a part of the breast cancer community – we share info and recommendations with each other. At some point, I know I will want to be involved with breast cancer advocacy in some way. There’s a lot of fuckery that goes on within breast-cancer-land – medical racism, corporate & non-profit pinkwashing, breast cancer research money not going to metastatic disease where it is most needed, heterosexism and gendered assumptions like pressure to perform femininity and get breast implants, and silence around the causes of breast cancer. I want to do whatever I can to contribute to the culture shift that I need from the breast cancer world. And, at times I just want a break. I want to open my email or social media and not see anything that reminds me of my fears of dying from this disease.
It’s hard to write about cancer treatment updates without feeling like this litany of treatments, side effects, and fears defines my life. As always, there are beautiful moments every day. My life has shrunk inward but I appreciate this in many ways. There has been a winnowing, a focusing. I appreciate the mundane more than I ever have before. I appreciate moving slowly, and doing less. I appreciate everything I’m learning from this cancer experience.
I joined a Korean drumming group that meets every other week. Even though we aren’t that tight together yet, and I have missed a lot of practices, the drums make a beautiful sound and it’s pure, childlike fun to bang on my drum. I take Zero to the dog park and for walks around the neighborhood. It’s beautiful in Oakland – warm and sunny. There are flowers on our table every day (most of them from the yards & gardens of friends). Brian and I planted some things this year: fava beans, radishes, Russian kale, yarrow, perilla, and blue and white love-in-a-mist flowers, which are beautiful and vigorous and have self-seeded on the cracks in the sidewalk in front of our house.
I’ve been reading a ton. My perilla plants are flourishing which means I can make lots of my favorite perilla pickle this year. And I have so much fun getting stoned, cuddling with Brian and Zero, and watching British crime dramas.
I’m still slow to reply to text messages and email. I still love all of you. I’m full of gratitude for the good things in my life and my community of friends, who got me through chemo with financial support, cards and letters, care packages, food, text messages, flowers, pot cookies, and books.
Thank you so much!