The Lung Con

Oh great, another illness post…

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 proof-of-life photo for my friends.
A proof-of-life photo for my The friends.

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.

pulmonary_embolismI 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.

In ICU with my pussy hat for warmth.
In ICU with my pussy hat for warmth.

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!

No cannula anymore!
No cannula anymore!

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!

Valentine and me, minutes after I got home.
Valentine and me, minutes after I got home.

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!)

Waiting in line at the pharmacy

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.

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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…

Citizen Pain is in da house

A production 24 years in the making… Citizen Pain! Yes, that’s how long I lived in the U.S. under work visas, then under spouse visas as a resident immigrant. Becoming American has never been something that appealed to me on an emotional level (I’m Canadian, I don’t have to fake it!)

But in recent years I have come to realize just how many rights which I thought applied to residents do in fact apply only to citizens: the right to legal representation, for example. And immigrants can get in trouble for a lot of legal activities, such as supporting civil rights groups, marching and protesting, or using certain privacy software like Tor or Signal. As my attorney and friend said, you can be right about the issue but you’ll still get in a mountain of trouble.

So this year I decided to bite the bullet, particularly since I was hoping to vote after over two decades of paying taxes. Unfortunately, a lot of immigrants had the same idea and my application, though sent in April, was not processed in time. But in the weeks since the horrible November 8 election, the Obama administration worked hard to child-proof the country, including processing as much of the immigration backlog as possible. It was my privilege to be sworn in today as a citizen, on the last tenure day of the president I admired so much.

The oath ceremony took place at the historic Paramount Theatre in Oakland, California, and 1,240 new citizens from 91 countries were sworn in. (I understand that throughout the country, this week was a marathon of such events, thematically linked to Martin Luther King Jr. Day.) We were also able to apply for a U.S. passport and voter registration, so I took care of these items.

To be honest, the ceremony was a little odd, because U.S. Citizenship and Immigration Services personnel are trying to be nice, joyful, congratulatory — and until this moment, none of us applicants have seen them be anything but suspicious, stern, and disengaged. As my friend Sean Nittner put it, it’s like having the Department of Motor Vehicles throw you a party! Also, when they were listing the 91 countries of origin, they forgot Canada. Dudes!

After the ceremony and various paperwork, we moved next door to Tiera Mia Coffee for our first caffeine of the day. We took a table in a corner and were having a nice conversation between my husband Edmund, my friends Sean and Dorene, and me, waiting for another friend, Marc, to join us. But then a weird incident happened.

First, this tall guy approached our table and just loomed over us, staring at Sean who asked if everything was okay. The guy said yes, still glaring; Sean gave a few polite words (something like “Good, I’m glad. You have a good day, now.”) It was said in his typical courteous way, didn’t sound snarky in the least. The guy went back to his table and we forgot about the incident.

Then maybe 30 minutes later, he got up, marched to our table and shoved his sandwich (and knuckles) in Sean’s face, then flipped our table in Sean’s lap! Cups and plates went flying, we were splashed and so were our table neighbours, and we all jumped to our feet yelling “What the hell! Why did you do that?” Without answering, the guy spat in Sean’s face, twice! Then he grabbed his skateboard and stomped off, never explaining himself.

The cafe manager called the police and a couple of officers showed up a few minutes later, took down the stories, and viewed the cafe’s surveillance camera footage. The best we can guess is that it was a case of mistaken identity; the guy did not give the vibe of someone looking to pick a fight with anyone, just with Sean.

After some cleaning up and new drinks, and telling the whole story to our friend Marc, we moved a couple of blocks up the street to Agave Uptown, an Oaxacan restaurant where I had made a lunch reservation. Happily, we encountered no further weirdness, and all felt like we had had enough for a while.

As a newly minted registered voter, I plan to keep the phone red-hot with calls to political representatives. Until now my opinion has never mattered; if you’re not a registered voter, your signatures and calls don’t count. But I do plan on being counted now. And I know calls are much more effective than form letters and Internet petitions. So I will use my new citizenship, oh yes I will.

Come at me, 2017

2017As you might have guessed, the last several weeks have been harder on my morale than my body. The last stretch of the American presidential election was hugely stress-inducing, and the results were soul-crushing. I know my friends know what I’m talking about, I heard it in their words and read it in their posts. Except for the most upbeat of topics — my gaming group, Thanksgiving, and the good progress in my treatment — I have been unable to write anything in over eight weeks. I keep thinking of words in my head, it’s all there, but I’ve been unable to put them down in writing.

Two months ago, I was cautiously optimistic. I thought we would probably get a weak Clinton victory, then some incremental building on the cautious progress made under the Obama administration; against this backdrop, I was expecting to focus a lot of energy on my geek communities, and particularly the gaming community, as I returned to health.

Then the world changed. I’m still not ready to unpack this event, but the result is that people previously known as “Gamergators,” “MRAs,” “pissing booth warriors” and “some racist trolls in the bottom drawer of the Internet” now feel emboldened to take their assholiness for a stroll in real space. Suddenly, it’s not just in a few compartments of our lives that we can meet with acts of hatred from people we don’t even know. After what most of us considered a shitty year, 2017 looks like it will be even worse. I met January 1st more downcast and apprehensive than I ever have in my life.

My backlog of writing is not helped by the fact that I feel I will be discussing many unpleasant topics this year. Indeed, in late October and early November before I sank into depression, I was planning to start writing a series tackling some of the successes, failures, and possible paths forward for diversity in tabletop gaming and related geeky pursuits. I feel this is more needed now than ever, but I don’t know how much justice I will be able to do to the topics.

Nevertheless, I can’t just roll over and play dead. It’s not the first time I have dealt with depression, and I will deal with it this time again. In fact, I was hit by a wave at about the same time the year before, when my kind and benevolent employer unilaterally cut my hours and stripped me of my benefits. You know what got me out of the ditch? Cancer. That’s right, sometimes it’s not an improvement in circumstances that serves as the ladder to climb out of a hole, but a disaster you have to respond to. And 2017 looks to be quite the disaster, so I might as well hold on to that to climb.

Happy New Year, folks. Me, I take pride in the fact that I managed to write this post without too much profanity.

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.



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.)


The best news!

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.

“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!


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.



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.