Thanks all around

johnny-automatic-maid-with-cornucopia-800pxYes, 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.

Thanks

Radiation Powers… Activate!

mitologia-de-cancerI’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.

 

 

In which direction lies progress?

Autumn LeavesI have not forgotten that I promised to go back over the “Two Minutes Hate” issue for the three-month assessment of its impact onto the tabletop role-playing community, and particularly the parts of the community centering on indie and small-press games. Since I started the assessment, I have tallied responses from a variety of threads online, and discussed with and interviewed many people closely involved with and/or affected by the events.

In short, based the evidence I collated I believe that after three months (I’ll get back to this in a moment), the impacts of “Two Minutes Hate” and its follow-up FAQ have been more negative than positive, and that the negative impacts are disproportionately felt by a few people who were already on the receiving end for frequent online abuse. The post failed to clearly convey Mark’s intended message and caused harm both directly and indirectly to people singled out as examples. I see the following as key errors:

  1. Focusing on a problem that seems iffy at best, a perceived conflict between aficionados of two gaming styles.
  2. Conflation of this perceived conflict with a very real lack of diversity in the tabletop game design, publishing, and playing community.
  3. Grouping a series of situations Mark disliked in the gaming community around his conflation of the two issues.
  4. The choice of several of these illustrative examples as poor ones to support his argument.
  5. The calling out of individuals who were not equal offenders in evenly-matched conflicts but the long-time victims of online abuse (or their infuriated allies.)

Because of the tangle between issues, between illustrative examples, and between call-outs, it became practically impossible to discuss individual elements without bringing in distractions and derailments.

But wait, there’s more!

In the past two weeks, we’ve also seen game designer Avery Alder take flak for a very thoughtful update of her new Kickstarter campaign in which she explained why she was temporarily shuffling stretch goals to take Mark Diaz Truman and Marissa Kelly off the next immediate line-up item while she looked for a solution that would neither brush away the victims of harassment nor throw valued collaborators under the bus. As a result, she received a number of hostile comments and even loss of pledges.

I can’t wrap my head around this: having to take “sides” between Avery and Mark, between Buried Without Ceremony and Magpie Games, between Monsterhearts and Cartel? How are we not all the poorer for this sort of rift in the role-playing community? Then we saw the process all over again when Avery announced her final decision to re-instate the stretch goal!

I understand where a lot of this is coming from. A lot of role-players are idealists: we dream of changing things for the better, even if it’s just in a game — or with a game. And we idealists can second-guess ourselves to nothingness: “Am I using the tools of the Adversary?” “Am I standing up enough to my values?” and so forth. Usually, that’s good — we should check ourselves against self-satisfaction, confirmation bias, and hypocrisy. But excess can result in shooting ourselves in the foot.

And we’re all the heroes of our own tales. For what it’s worth, I believe that even a lot of people that dish out online harassment may be doing so in the name of high-minded principles. I’m not questioning motives, here; I’m assessing results.

Dark Backdrop

All this, of course, happened against the background of Gamergate, Sad and Rabid Puppies, mass shootings, Black and Blue Lives Matter, post-Brexit racism in the U.K., Front national capitalization on terrorist incidents in France, and a toxic presidential election in the U.S.A. which stretched over nearly two fracking years.

That background cannot be discounted as extraneous. There is a continuity at all scales, and the looming, larger conversation about which voices get to be counted and who gets to be scapegoated only increased tension for those who have learned through experience to expect abuse, and for their allies. We’ve all been so stressed and now it feels like the worst is coming to pass everywhere.

Is a little fracas now and then in a tiny hobby worth worrying about compared to this? I think so. We create and play our little games to express a key part of ourselves and to connect with like-minded individuals. Where will we start if not with those close enough to share our offbeat, niche passions?

I don’t believe in simple answers to complicated questions. And I am not upset about disagreeing with friends and allies from time to time, as long as we discuss with good faith and respect, and recognize our errors. There is no one I agree so much with that we won’t have an earnest, passionate discussion on some topic we disagree on which we both hold to be important.

So what now?

I didn’t want to repeat the error of packing into a single post too many things that deserve separate examination before they can be clearly linked. I pencilled an extensive assessment of “Two Minutes Hate” and its impacts, but this draft still collapsed too much in one post. I will publish my assessment soon, including authorized interviews with some of the principals (i.e., no quoting private conversations I’ve had, just formal interviews in writing or recorded with permission.) But I will publish it as part of a series of posts addressing individual issues such as:

  • Our House: What is our community?
  • Are We There Yet?: Representation in RPG publishing
  • Prism: Visible and invisible privilege (or lack thereof)
  • Bubbles or Airbags?: Safe spaces and curating conversations
  • Missing Stairs: Silence, calling out, and calling in
  • Summon Bigger Fish: Issues of scale in a tiny pond
  • The Wall: Boycott, blacklisting, and shunning

Several people knowledgeable about these issues have already agreed to upcoming interviews (time permitting, of course.) So I ask you, if you take an interest in our little corner of geekdom, to bear with me as I attempt to peel the onion and examine these issues (and more) in good faith. I would also love to receive your suggestions of topics relevant to this conversation.

Getting ready for radiotherapy

2016-10-26-19-53-32Last 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.

A good time in cancer recovery

cancer-constellation-jamieson-1822-smI’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.)

 

Did we see progress?

Trigger warning: Online harassment in the tabletop role-playing community.

Three-month check-in

depression_hurts_by_deadlywolfqueen-d50nfp0In 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.

The best news!

2016-10-06-12-47-14
Celebratory BLT, Caesar salad and fresh-squeezed orange juice.

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.

2007-01-25-17-37-33
“She’s alive! Alive!”

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!)

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!

 

 

Post-Surgery

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.

post-op-03

 

Surgery Rescheduled, and Other News

2016-08-31-14-32-48It’s been a relatively low-drama but high-stress time in our house. I’m slowly recovering from the chemotherapy, with accent on the slowly. I spent the last few weeks waiting for the results of my genetic test panel, prepping (mostly mentally) for surgery, reading about recovery, preparing my advance health care directive, and avoiding calls, emails and visits.

Yes, let me be honest: everyone wants news and I had none yet, and everyone has questions that I’m too frazzled to hear. So I kept a low profile; I apologize to my family and friends, I know they only ask because they care and I do the same when our positions are reversed. Consider this part of my self-care (my blood pressure results and disrupted sleep patterns confirm that I’ve been stressed.) However, yesterday brought some news.

Gene Genie

Cancer constellation in a circleThe genetic test panel was negative for mutation of the two genes most commonly associated with breast and ovarian cancer, BRC1 and BRC2. However, it did return positive on one of the two copies of gene MRE11A, recently linked to ovarian and breast cancer — so recently that numerical risk factors are not yet available. The genetic counsellor is going to do some additional research on the latest info and some modelling, and will call me back later today or tomorrow.

At this point, if no quantified risk factors are available and barring contrary advice from my medical team, I would go ahead with the current plan (conservative breast surgery and radiation therapy), with the recommended increased cancer screening in the future (I understand this means alternating every six months between MRI and mammogram.)

Cut Scene

I also had some blood tests done yesterday morning. Most important result: my blood coagulation rate was still too slow for surgery. As a result, my operation has been postponed to Friday next week, September 30. Since there are a bunch of pre- and post-op checks associated with it, I had a flurry of phone calls, messages, and reschedulings yesterday afternoon and this morning.

In fact, this flurry really did not help my stress situation: while I was on the phone with one department, another would call and leave me an urgent message! Add a few calls from family and friends in the mix, and me eyeing the clock for returning calls; and unrelated technical difficulties with various electronic devices in the house. By 7pm, I was ridiculously frazzled. And part of it, of course, is that I would have liked to be done ASAP with the whole surgery mess.

Not Much Thicker Than Water After All?

Getting back to that coagulation rate: I had an INR of 4.0, if you care for numbers, which means coagulating four times slower than normal. I’ve been on warfarin for three months to prevent the recurrence of blood clots. A few days before the surgery the patient stops taking warfarin and instead takes Lovenox injections. However, not only was my coagulation rte too slow yesterday, but it was the slowest it’s ever been, slower than it should even be in optimal warfarin use (the patient’s dose gets adjusted to maintain an INR of 2.0 to 3.0.)

The Anti-coagulation Clinic pharmacist doesn’t want to ramp me back up on warfarin before the surgery, so she had me take two days off from all anticoagulants, and I’ll have another blood test tomorrow morning to see if I should get back to Lovenox injections yet. After the surgery, there will definitely be some dosage adjustments.

I also received other blood test results in the evening. It looks like my white blood cell count and platelet count are inching up, but all the indicators relating to red blood cells don’t seem to have improved in five weeks. I hope to discuss this with a doctor today or tomorrow.

In Conclusion…

Things are not awful or miserable, they’re just proceeding with some inconveniences and, mostly, leaving both Edmund and I feeling anxious.

 

 

 

 

Masks: Play report and review

Masks

A few weeks ago, our friend AW ran a one-off episode of the role-playing game Masks for me, my husband Edmund, and two more friends, SP and MP. I thought this was a good time to talk about this game since the PDF version just became available on DriveThruRPG. First, I share a play report that goes a bit long, but talks about the mechanics as well as the fiction generated in play. I follow with a review of the game. Continue reading “Masks: Play report and review”