One thing I was not really aware of when I was diagnosed with breast cancer a little over thirteen months ago was the phenomenon patients call “chemo brain.” Even if I had been, I probably would not have put it very high on the list to worry about, compared to other symptoms and side effects. But it turned out to be a protracted, annoyingly lingering effect even after the end of chemotherapy.
It was, of course, at its peak during that treatment. The strangest thing was that I completely lost my sense of elapsed time. I am normally pretty good at estimating how much time has passed in a given subjective period, whether it’s on the scale of minutes or months. But during chemotherapy, I completely lost this ability; the feeling of time simply vanished. Everything was compressed into yesterday, today, tomorrow.
Things gradually returned to normal on this front in the months after I was done with chemo, but other symptoms continued: poor concentration, memory lapses, short attention span, inability to accomplish more than one task at a time, and this only by focusing hard. Given that I normally revel in efficiency and method, this was quite frustrating.
For the last six weeks or so, however, my powers of concentration, my mental acuity and energy have improved dramatically. I’m not back to peak performance yet, but it’s a sharp contrast with the mental sluggishness of previous months. Today I had jotted down twenty tasks on my to-do list and I have accomplished sixteen of them! Just a couple of months ago, it was a big deal to get one thing done in a day. This feels so much better, so encouraging!
Although we had planned to spend Presidents Day weekend at DunDraCon, I was concerned about a cold that was leaving me severely short of breath and occasionally dizzy last week. I saw my general practitioner because I had been told to watch out for symptoms like shortness of breath. She gave me antibiotics to avoid the cold turning into bronchopneumonia. But although the cough rapidly got better, the breathing and dizziness didn’t — I was panting from merely getting up and walking to another room. So on Friday morning when my doctor called to check back, she said I should go directly to the Emergency Room.
A few hours later I had had an electrocardiogram, a CAT scan, an echocardiogram, ultrasound of the legs, and multiple examinations, as well as being hooked up with an intravenous heparin drip for blood thinning, electrodes to monitor my heart, a pulse oxymeter, three catheters in my arms, a sphygnomanometer cuff for frequent blood pressure monitoring, and a nasal cannula for oxygen.
Doctors said the CAT scan showed “multiple, extensive” pulmonary embolisms, and the echocardiogram indicated that my heart was enlarged on the right side from overwork to pump blood through the obstructed alveoli. On the plus side, my physical strength, blood pressure, heart rate, respiration rate, and even oxygenation were generally good, no clots were found in my legs, and I had no chest pains at any point.
I was at one of these tipping points when the benefits and risks of two different treatments seem to exactly even out.
In a moderate case, the treatment would consist of administering heparin to prevent further clots, then allow the clots to dissolve gradually, transitioning me to another blood thinner like warfarin for long-term maintenance. The risks in this are primarily associated with clots starting to move before they’re small enough and causing cardiac problems.
In a severe case (i.e., when things are dire and you can’t really f– them up much more), the treatment would be the administration of a tissue plasminogen activator (tPA), often referred to as a clot-buster. The risk then is to cause catastrophic internal bleeding, particularly in the brain — such as a stroke.
In the end the primary doctor, a pulmonologist, was very cautious. She sent me to the Intensive Care Unit instead of a regular room because clot-buster treatment can only be administered in the ICU due to the risks. I was monitored at all times with a heparin drip, but the tBA treatment was not immediately administered. It was crazy busy in the ICU with some acute cases (fortunately, I was in the quieter wing) so it was only in the evening that the doctor was able to come back and talk to me. Since my vital signs were strong and I had even eaten dinner (I was SO hungry by then, having left home without even breakfast), she decided to keep me on heparin but supervised in the ICU for the moment.
Thus ended Friday night, with me sleeping in the ICU, nurses watching me and blood samples being drawn every few hours. Despite the severity of the case, I was by far the “healthiest” looking patient in ICU. Two things that made the nurses chuckle: I asked for a sleeping mask, and I was the only one well enough to eat an actual breakfast on Saturday morning. By Saturday afternoon I was allowed to get up, take a few steps around the room, sit up in a chair for a couple of hours. I spoke to the doctor a few times throughout the day. In the evening I was well enough that she transferred me to the Transitional Care Unit (TCU); she just wasn’t willing to risk a stroke if she gave me the tBA.
So I got to TCU in time for the night shift. Because the ratio of nurse to patients is much lower there, the doctor told me with some insistence that I was not to wait at all if I needed even the slightest help, but immediately use the call button to summon a nurse. So I did. In fact, I try to be the most obedient and courteous patient around, but when I need help, I ask firmly. I had to, because there were a lot of distractions during my stay in TCU!
When I was wheeled there, the room across the corridor from mine was already the site of a commotion. The patient there was a woman who appeared to be suffering from dementia, along with whatever other problems were being treated. She was having hallucinations at times, she would not comply with the personnel’s instructions, she would not let them take her stool-stained garments, she yelled, etc. Several nurses and aides were tied up with her case at all times. Their patience and gentleness was truly amazing, but they were clearly very tired.
In addition to the noisy neighbour, other rooms had multiple visitors, and I could hear everyone’s televisions. Possibly because of the number of elderly patients, the wing was kept much warmer than the ICU so I was sweating like a pig. Nevertheless, I was grateful that the nurses told me they would trust me to call for any help I needed and allowed me to keep the door to my room closed for the night. And yes, I could hear the agitated patient and her cohort of personnel throughout the entire night. I was grateful I had my iPhone and earbuds to have some soothing sounds covering most of this. After my 3AM blood draw, instead of going back to sleep immediately, I spent a couple of hours making a music mix on Spotify!
I finally slept again for a few hours, until I was awakened on Sunday morning for more monitoring, sampling, and the sounds of Jesus TV coming from neighbours’ rooms (soon to be replaced by super-violent-movie sounds!) But happily, once the lab results came back I was switched from the heparin drip to Lovenox injections every 12 hours and warfarin tablets in the evenings, much less cumbersome. I was also allowed to do without the oxygen cannula for most of the day, so I had fewer pieces of equipment interfering with comfort.
Edmund was actually with me for much of the time, unexciting as it is to sit in a hospital chair. Since we live only a few minutes away, he was able to come and go for meals, errands, and checking on the cats. He brought me dark chocolate-covered pretzels and raisins, fresh blueberries, and flowers. Throughout the weekend he kept up this shtick with live reports from the “game convention” which made me laugh.
Since I could hear everyone’s televisions, I played music and sang along when I was alone — as confirmed by the pulse oxymeter readings, this actually helped me get nice, long, regular breaths. The nurses chuckled again and encouraged me to continue (I told you they’re dedicated!)
On Sunday afternoon I was allowed to take a couple of closely supervised walks up and down the corridor; it was nice to stretch my legs. I spent a second night in TCU, a little quieter noise-wise though the agitated patient started again on Monday morning.
But after breakfast and a couple more walks, the doctor came to talk to me. Because I had someone at home with me and because I showed good comprehension of, and compliance with, medical instructions, she said she would let me go home but sternly admonished me to treat this as if I was still in the hospital: bed rest or sitting quiet, no activity until my blood prothrombin time (coagulation rate) is in the right range and the clots are dissolved. And by early afternoon on Monday, I was home. Hurray!
It was so nice to be home, without wires and catheters, and buried instead under a pile of purring cats! Valentine, in particular, has been keeping a close eye on me. It’s been a luxury to sleep in my own bed and be able to take a shower at last!
I’m in contact with the anti-coagulation clinic pharmacist for dosage adjustments. I must report any unusual symptoms, of course, and come in to the lab for blood sampling every couple of days. The best guess right now is that the tamoxifen I started taking in late January to prevent cancer recurrence is what precipitated the problem (pun intended). I have follow-up appointments scheduled with my general practitioner and my oncologist.
I want to say thank you to all my friends for their encouragements and kindness. I know some of you wanted to come visit me in the hospital, but I just wanted to rest most of the time. The care I received was stellar, but I still wouldn’t call it a fun place to hang out at! And thank you to all the ER, ICU, and TCU nurses and doctors, who were so kind, respectful, and competent (and in some cases, funny!)
Today I had a follow-up appointment with the surgeon to check on progress as I heal. Edmund kindly accompanied me, though it’s tedious for him. It was slow-going because the entire computer system was affected with unusual lag, and every appointment was running late.
The doctor blessed my progress, warning me that healing would continue to be slower than normal as long as I was on some of my post-cancer medications. She also gave me a prescription that had to be compounded at the hospital pharmacy, and the necessary paperwork to extend my disability leave.
I decided to take care of the paperwork first, hoping this would give plenty of time for the pharmacists to prepare my prescription. When we got to the Release of Medical Information Counter, there were a LOT of people waiting; the number being served was 11, and I was assigned No. 25. We sat down to wait but a quarter of an hour, we were still on No. 11. Edmund suggested that he stay to provide my paperwork, and I go check in at the pharmacy to make sure the order was in.
So I got to the pharmacy, checked in, and was told it would take about 45 minutes. Edmund and I started a turtle race for who would get done first, and I decided to keep him entertained with tales of my adventures.
If you’re wondering, it took me a total of just over 90 minutes from the moment I checked in at the pharmacy to walk out of there. Edmund finished first with 15 minutes to spare, but since he’d already waited waited at least that long before I got the the pharmacy, it’s probably a draw. That said, the personnel was very nice and diligent, they checked on me a few times, it’s not their fault the place was packed and the computers were sluggish. Yes, we could have decided to come back later, but I didn’t want to restart the clock…
Unsurprisingly, my gaming in 2016 was affected by my health issues. I had medical appointments, minimal energy, and because of a suppressed auto-immune system, I avoided large gatherings like conventions and in-store game days. The only convention I attended was my beloved Big Bad Con in October, and I still had to have regular naps in my hotel room! The games I did play, I tended to play repeatedly at home, online, or with a small group of close friends. The length and complexity of games I could play was often reduced — even the size, since we played games with a small footprint on a surgical tray in the infusion room during chemotherapy!
By December 31, I still ended up with 47 different games in my list, down from 62 in 2015. Let’s start with some summary numbers:
My game types were divided between about 55% tactical and strategic play (2 miniatures games, 13 board games, 11 card games for a total of 26 different titles) and 45% narrative play (19 role-playing games, 2 storytelling games, and no live-action role-playing game this year, for a total of 21 titles). This does not reflect the respective amount of time or number of instances I played each; I have not been tracking this level of detail.
Games I labelled “storytelling” rather than “role-playing” included Fiasco and Downfall.
The distinctions between board games and miniatures games or board games and card games can be blurry, such as in games like Yggdrasil or The Dresden Files Cooperative Card Game.
Some 28 of these 47 different games (60%) were new to me: I had never played them before 2016. And of these new games, 5 were playtests (18% of the new games or 11% of the year’s total.)
To my chagrin, only 6 (13%) included at least one woman among the designers (Megan Bennett-Burks, Emily Care Boss, Peggy Chassenet, Caroline Hobbs, Anna Kreider, and Emma Larkins.) I’m unable to track persons of colour among designers, though I believe there are a few (e.g., Christopher Badell, I think?) I want to do better in supporting diversity.
I also rated each game subjectively, from 1 to 5 stars:
Among the 19 games I had played before, the average rating was 4.0 — no surprise there — with my favourites being Night Witches and Sentinels of the Multiverse, each scoring 5 stars.
Among the 28 new games, the average was of course a little lower, 3.4; my favourite new games were Masks and Venture City, each rating 4.5 stars, and my least favourite were Exploding Kittens and Haiku Warrior, each earning only 1 star.
I played with a total of 46 different people, 21 of which were new to me (46%.)
This week I just crossed the third big milestone of my cancer treatment: the last of the radiation therapy treatments.
All throughout I diligently applied moisturizing cream three times a day, and indeed my skin did not show any lesions until the night before the last treatment, when an area started peeling. This is important because skin lesions in the burn areas, especially if they weep liquid, can require stopping treatments and delaying until the skin has healed. It’s not good for treatment, it’s painful as hell, and it prolongs the misery. So I was very careful to follow instructions!
Just like any heat burn or sunburn, the skin continues to redden after the injury, then cracks and peels. The care instructions I received tell me that the worst point should be about seven to ten days after the last treatment. The worst spots are typically at the location of skin folds (for breast cancer, that’s under the arm and the underside of the breast) and at the beam’s entry points.
Right now, the underarm area, which also the location of the lymph node biopsy incision, has started peeling “dry” (“dry desquamation” in medical parlance), and growing new skin, so it’s very tender but I keep applying the radiation cream and it’s doing well. The underbreast area, also the location of the primary lumpectomy incision, is peeling “wet” (“wet desquamation”) and I have to apply a prescription ointment, silver sulphadiazine, twice a day. I’m popping ibuprofen a few times a day…
As I mentioned before, throughout the treatment Kaiser Permanente’s personnel was so very kind, helpful, and professional. On the last day they gave me a cute certificate of completion. I am scheduled for a follow-up visit in a few days, the same day I have my next infusion of Herceptin.
In more fun news, my hair has grown back enough to use in my avatar — but my head gets cold in winter weather! I compromise by wearing a headband to cover my ears when needed.
I have a small surgery scheduled for the first week of January to take care of some indirect consequences, but all in all, I’m doing well.
Yes, it’s that time once again in the U.S.A., Thanksgiving and sharing your gratitude. It was not difficult to find things to be thankful for, but it was difficult to write about them; 2016 was a very sucky year from the global level to the personal level. Nonetheless, I have things I’m very grateful for.
Thanks, Obama — actually, that’s Thanks, Mr. President, and I’m thankful for that. You have been a smart, compassionate, dignified, eloquent, funny president for eight years and I will miss you so much.
And thanks, Michelle Obama, Bernie Sanders, Hillary Rodham Clinton, Elizabeth Warren, Cory Booker. You encouraged us to be our better selves during this depressing, mind-boggling year of election campaigning.
Thanks, people of good will and honest mind who have fought, and plan to keep fighting, the return of fascism around the world.
Thanks to my husband Edmund who had a year of waiting on me hand and foot. I know this was rough and I assure you that I never forgot, in the midst of my own problems, what you were going through.
Thanks to my family — my mother, siblings, extended family who also had their own sorrows this year. I know you were worried about me, and hated that I was so far from you in a country known for its terrifying health care system. I hope I kept you informed enough to reassure you.
Thanks, my friends close and far, including many wonderful people I have never met face-to-face! Thank you for the encouragements, the help navigating bureaucracies, the cute animal pictures, the interesting discussions, the sage advice, the thoughtful gifts, and the simple fact that you cared.
Thanks, Valentine, Ubaid and Phantom, my three felinotherapists. You take good care of me.
I’ve now had nine of my 25 radiation therapy sessions. I receive them five days a week at a dedicated facility located about a quarter of an hour away from our house.
I check in at the front desk and they send me on to the patients’ waiting room, women’s side; I change my upper body clothes for a fetching hospital gown, and wait for the technician or nurse to call for me and escort me to one of the three rooms fitted with the same radiation oncology equipment. (It’s pretty cool, the personnel let me check out the control centers for each, and they can share all parameters between the three as needed rather than reset everything manually.) They position me properly on the machine, and the treatment itself takes only a few minutes. I go back to the changing room, get dressed and I’m done.
This feels quite different from the chemotherapy treatments. The treatment center is very nice, everything feels sunny, comfy and elegant whereas the infusion center is functional but somewhat crowded and, well, hospital-like. Here, with your quick daily treatments you get to see the same patients waiting along with you, so you say hello, you get to know names, you chat and compare notes. At infusion you show up every few weeks, so you get to know the personnel but not the patients, everything is hushed and quiet, and you try not to disturb anyone from their private misery.
(One thing that is similar at both places: the personnel is so kind, competent, and helpful!)
I’m just starting to feel the effects on my skin, but I have been following instructions and moisturizing three times a day to mitigate effects; a friend from the East Coast sent me a tube of the radiation cream she had found most effective when she underwent this treatment some time ago. Super kind!
My felinotherapy team has been keep an eye on me too.
Last week mom came to visit and check on me. She had not been to California in 22 or 23 years, since a lovely vacation we had taken along the coast from San Francisco to Oregon. She also had not seen me in person since dad funeral in 2008 because the economic crash wiped out our savings and left me either under-employed or too busy holding on to multiple jobs to be able to travel. (At least we’ve been using video calls in recent years.)
On good weather days, we drove around the North Bay coast: Pacifica, San Francisco, Sausalito, Tiburon, Richmond, Emeryville. On rainy days we went to the Asian Art Museum, shopped for souvenirs, or stayed home to chat and read. Edmund made fantastic breakfasts of crepes or French toast, and authentic San Francisco cioppino for dinner, or we took mom to some of our favourite restaurants. Mom really enjoyed her visit.
I had a physical therapy class on Friday, shortly after mom flew back to Montreal. It was a very small class, you can only have three or four patients at a time. I learned a series of exercises I should do every day to help heal properly and avoid lymphedema.
A Facebook friend sent me skin cream for radiation effects, a very kind and thoughtful idea. I would not have thought of it otherwise, but moisturizing a few days in advance and then throughout the radiation treatment helps manage the skin burn effects.
On Monday I had a CT scan to get every movable part of the equipment (and of me!) properly positioned for radiation therapy. My chest was decorated with a variety of pen marks, then three little dots were tattooed to help line up the beam. I asked for the full Maori style but they turned me down.
On Tuesday I went shopping for bras and books! Now I have better support while I read Usagi Yojimbo…
Next week I have the simulation appointment on Tuesday (a dry-run of the whole radiotherapy sequence) as well as a meeting with a nurse to talk about preventive care during treatment, followed by a Herceptin infusion. Radiotherapy starts for real the next day.
I’m continuing to recover from surgery and chemotherapy, even as I get ready for radiotherapy. Overall it’s been a good fortnight on that front:
I met with the radiation oncologist, Dr. Patel. He outlined the procedure as well as the risks and side-effects. I will be receiving five weeks of radiation therapy, five days a week, starting early to mid-November (to give time for the surgical incision sites to heal.) Because of factors like age and breast size, he’s opting for a lower dosage for a longer time (radiation therapy can be staged over three to six weeks.) The treatment targets the entire breast.
I had a MUGA scan to check on heart function. I have them every three months while receiving Herceptin, and they continue to show good heart health.
I attended Big Bad Con, my favourite gaming convention, over the weekend. This deserves a post of its own to talk about role-playing, but it deserves to be mentioned here too because it was my first exposure to crowd event since a museum visit in early March.
While I was receiving chemotherapy, I was discouraged by the medical team from exposing myself to crowds because of the risk of catching germs while my white blood cell counts were depressed. And this weekend my energy level was still lower than normal, but it was awesome to be well enough to attend, and to see lots of friends!
I got a bone density test on Monday morning, because chemotherapy, radiation therapy, and Herceptin treatment are all possible factors for developing osteoporosis. In addition, my mom did get osteoporosis at menopause, so there’s the heredity factor. But the test results were good, my bone density is a little above the median, so the risk should be manageable.
I had another infusion of Herceptin on Tuesday. I drank copious amount of water ahead of time to help my blood vessels be easier to find, and the nurse was able to successfully put in the catheter on her first try. No pincushion treatment this time!
My taste buds are slowly returning to normal. I have been able to eat foods and spices I had not touched for months, and it was a decadent pleasure to be able to eat carne asada and (gasp!) hot dogs. I’m still cautious and eat lots of salads.
I received my post-treatment instructions and had a call with my oncologist today. She’s very pleased with the way my body has responded to treatment. She outlined the next steps including a few years of hormone treatment after radiotherapy, and ordered some blood tests to check whether I have fully entered menopause (the chemo cocktail induces menopause.)
Lest I be accused of burying the lede again: I got my biopsy results for the margin (area around the tumour removed) and lymph node samples from last Friday’s operation. There was no sign of residual cancer cells. Comparison with the original pre-treatment biopsy drew an assessment that neoadjuvant treatment (chemotherapy) had been very successful.
Since Friday I’ve been recovering, without nearly as much pain as I expected. The first day I took the prescribed pain relievers around the clock, but since then it’s been only as needed, usually at the end of the day. My cats have been keeping an eye on me, and I’ve been eating lightly but healthily and with some appetite.
Sunday was the first day I was authorized to take a shower, and I felt some trepidation at the thought of looking at the incisions. I carefully removed the bandages and found no sign of bleeding or inflammation. Of course, the cuts and sutures look like I’m the bride of Frankenstein’s creature. I very gingerly washed, trying to get rid of the large swaths of colour left by the surgical cleaning products on the skin of my arm, shoulder, upper back, chest, and abdomen. Pat dry, terrified of pulling on a suture. Oof! Adventures in hygiene!
I’d had been instructed to walk and move my arms in order to prevent blood clots and to promote healing. (As of Friday, I no longer need to take warfarin nor Lovenox.) I try to get my little walk most days, either on a nature trail like San Andreas Lake or just running errands. (I’ve finally discovered that the Audubon Society has field guides as free apps, including one for the birds of California. Woot!)
To adventure! Or a 10-min. walk, whichever.
Edmund made salmon nanban for me.
Felinotherapist at work.
So when I went in today I was feeling good about the process, and I had a reasonable expectation that the news would not be too frightening. But in truth, I was not ready for completely good news. I was expecting words like promising, inconclusive, monitoring, follow-up, and so forth. So when Dr. Chen gave me the very categorical “no residual cancer cells found” and “very successful chemotherapy program,” I felt a shock.
My reflex was to turn to Edmund to high-five but he was on my sutured side so I refrained. Great time to pull something! Edmund had to wipe tears away. I wanted to hoot loudly, but I would hate to be a jerk to other patients and to personnel. Instead I asked Dr. Chen to thank her whole team for me. And we walked away without being disruptive.
Only in the parking structure did we exchange a long hug.
Next Monday: we meet the radiation oncologist to talk about radiotherapy!