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.)
Trigger warning: Online harassment in the tabletop role-playing community.
In late July, Mark Diaz Truman posted a reflection on his company blog (Magpie Games) about a perceived conflict in tabletop role-playing sub-communities, followed by a FAQ a few days later. I gave my own opinion back then when Mark asked, in response to my disagreement:
I’d also encourage us all (including me) to look at the effects 3 mo, 6 mo, and a year down the road.
It’s time to check in on the effects of the post after three months. Mark concluded his posts with:
I want to inspire conversation and self-reflection, and I believe that people have engaged in productive discussions both online and offline as a result of the post.
If you have been following the various conversations that Mark’s thoughts sparked, if you have some familiarity with the tabletop role-playing community and particularly with the subsets Mark focused on, OSR and story games, what if anything did you observe? For example:
Do you feel this has affected the way you post? If so, how?
Are any voices more frequently heard since these posts? Or less frequently?
Has the tone of community influencers changed in any relevant way?
Have certain frequent or prominent discussions changed in tone, style, or frequency?
If you can cite data, like Jessica Price and Jason Corley did last time, extra special thanks.
Credits: Illustration is called “Depression Hurts“, by Inkin Oddity; released under Creative Commons Attribution-No Derivative Works 3.0 License.
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!
TL;DR: I’m nearly over the second of the three big challenges — chemotherapy, surgery, and radiotherapy. I had an operation yesterday for conservative breast surgery and I am doing well.
I’m just a pincushion, gotta face the facts…
On Tuesday I had a Herceptin injection (I’ll continue to have them every three weeks through March) which turned out to be a bit more of a challenge than expected: it took three nurses, four attempts and half-an-hour to get a good intravenous feed. I have small, deep, crooked blood vessels that “roll” easily — it’s a family thing, my mother and sister have them too.
I hate when the only vein the staff can use are the ones on the back of the hand; however, this time we then graduated to trying the one on the back of the thumb, and it made me forget all the others before. Finally, the third nurse to try hit a very nice one on my wrist without missing a beat. Yay! The infusion itself was nothing to speak of.
DC chillin, PG chillin…
On Thursday I had to go to the Nuclear Medicine Department to get injected with a radioactive tracer that would make it possible to locate my lymph nodes during the surgery. Unfortunately, the normal courier apparently never showed up with the radio-tracer doses (there was another woman waiting for the same.) The staff had to call for another delivery.
Given that the isotopes have a half-life of six hours, this stuff is made as late as possible before use, which minimizes exposure, release of radioactivity and potential for incidents. As a friend who works for another health care network points out, hospitals also hate to deal with unused doses from patient no-shows.
Anyhow, I had arrived 15 minutes early for my 11:00am appointment, and we started at 12:45pm! So I chilled in a hospital gown for two hours — really chilled, as the air conditioning in that place is hardcore. Then after injection I had to wait 30 minutes and massage the area to help the tracer spread. So here I am in the waiting room, fondling my breast… Good thing by then everyone else had left.
And on Friday morning I woke up with a sore throat.
Ready to cut you down…
Friday was the Big Day. I had to check in at Admitting at 8:15am. I was fasting since midnight, I had prepared all my belongings and clothes the night before, I had showered then washed the incision area with the special towelettes moistened with some godawful chemicals, I had taken my prescriptions and stopped drinking even water by 7am. I was ready.
Except for forgetting my wallet, which I was sure I had pocketed. Edmund went back home to look for it, without luck. Fortunately, the hospital staff have seen it all before. They asked me a series of identifying questions, and concluded I wasn’t there to get unprescribed surgery for fun so I was admitted. They took me to Hospital Ambulatory Services (which they always refer to as HAS) to change into the fetching hospital gown, answer many more questions, get my vital signs, etc.
A very nice nurse went through the long questionnaire with me and entered my responses in her computer. One of the questions was whether I had any children or minor dependents, and I said no. Then a page or two later, another asked whether I had had children. The nurse gave me a surprised “No children?” then asked how long I had been married. “Twenty years this year,” I told her. She chuckled and said “Oh, then your husband is your child, right? Or your cats.” I had a fraction of a second’s hesitation, but decided it was not the time for my feminist manifesto, so I gave the most sincere chuckle I could manage.
It took two tries and two nurses to install my IV… After all this they led Edmund in to sit with me. He was kicked out again briefly when the surgeon came to check whether she could detect the radio-marked lymph nodes, and decided we also needed blue dye tracer. (I peed blue or light green for the next 24 hours.) She wanted to able to obtain at least three sentinel nodes for biopsy.
It was pretty disconcerting in that room to be between a patient who seemed to sleep soundly, based on his basso snore, and a woman who whimpered in pain until a doctor convinced her to accept an injection. After a little bit more waiting, I was finally rolled out to the operating room and Edmund had to return to the Surgery waiting room.
Because I was having conservative breast surgery, a.k.a. “lumpectomy”, this is normally a short (one to two hours) outpatient procedure with local anaesthesia and sedation, rather than general anaesthesia. I met with the anaesthesia and surgical team, heard the pre-op briefing so we’re all sure they’re operating the right patient for the right thing, then I don’t remember anything after that in the OR.
I understand the procedure took two hours and I was wheeled out to the recovery room. There, more very nice nurses took care of me. I am very grateful to Sirta, who told me as soon as I stopped being loopy that the operation had gone well and that two preliminary biopsy results were negative. He was very kind, and he put my mind to ease — the biopsies are what I’ve been worried about, not the surgery. He gave me some painkillers and arranged for a prescription, then took me back to the HAS room to finish waking up with some company (family and friends can’t go to the recovery room.)
When I got there, I found myself next to another woman who had had almost exactly the same operation: conservative breast surgery to the left breast. However, she was in severe pain. I overheard part of the staff’s discussion; apparently she had already had difficulties during the chemotherapy treatment (I’m not sure what), and in the OR they had to switch to general anaesthesia instead of local plus sedation. She had been given two painkillers in the recovery room but was not improving enough in the HAS room so she had to be wheeled back to recovery to get more care. My heart was going out to her.
Edmund arrived a moment later then went to get my prescription, sending our friend Dorene, who had been keeping him company during the operation, to HAS to see me. They kept me company until I was both allowed and able to leave. By then I was doing pretty well; the areas of incision and biopsy were pretty tender, of course, but the painkillers were doing their job. To my surprise and delight, I had no nausea. In fact, I was hungry, having been fasting since the night before.
I’ll be eating that sushi all day…
I suggested that Edmund, Dorene and I go to a Japanese restaurant in our area, Kamameshi House, where I could at the very least have miso soup and rice. And I discovered that I was hungry enough to eat a real meal! I finished my bento box, except for some rice. Yay!
Finding myself sitting with friends in a nice restaurant with nice company, without much pain, I congratulated myself for my choice of surgery. It’s not for every case, obviously, and certainly the poor woman I had heard in the HAS room was not having the same experience at all, but for me it felt great.
And when I got home, I found that I had indeed left my wallet on my desk, buried under paperwork. I had already checked online, from my phone, that there was no activity on the cards, but it was nice not to have to go through the hassle of replacing everything. I went to bed and slept! Today I spent much time reading the astounding number of well-wishes from friends. I love you all, you’re so kind!
Today Dr. Chen, my surgeon, called to check on me and assured me she would call again as soon as the official test results were in, so we’ll know if any additional surgery is needed.