Things have been tough all around in the last two years (among the 99%, anyway), and our household was no exception.
When I diagnosed with breast cancer just over two years ago, I lost the energy and time to work. For months before I was diagnosed, my employer had unexpectedly dropped me (and hundreds of other employees) from full-time salaried to part-time as-needed, cutting all benefits including health insurance. When I contacted them to see if they offered any kind of emergency assistance, they said no.
For a while I received income from the state disability insurance and that kept us afloat, but after a year it ended—just as I was recovering from pulmonary embolisms linked to one of my treatment medications. But soon I began feeling better and started writing again, and managing projects for Evil Hat Productions again. I contacted my day-time employer to let them know I was available for work again. They told me they were terminating me instead.
I was getting good feedback and writing contracts from game publishers but that’s a side income, not enough to pay rent in the San Francisco Bay area—unless I was able to produce an additional 70,000 words a month. Instead of reaching this fantastic level of productivity, I started getting other physical and mental health problems and so did my husband.
Despite the incredibly generous help of friends and the wonderful publishers I work with (Evil Hat and Vigilance Press in particular!), we kept losing ground: maxed out credit card, checking accounts frequently overdraft, utilities cut on a rotating basis of “who can we afford to pay right now”, and falling behind on the rent—putting the landlord, one of our oldest friends, in financial danger himself.
We reached the bottom recently, facing homelessness even as I was being checked for suspected heart and lung disease. To be honest, for a few days the only thing that kept me from doing something stupid was remembering how much love and effort my family, friends, and the medical staff had put in keeping me alive and well these past two years. I had no idea what to do, and I know my husband Edmund was equally floored.
Then some of our friends helped us again find money we didn’t know we could access (small retirement funds we can cash), and to make a plan to purge our possessions, shrink our footprint, and balance the future budget. The house we’re renting has a mother-in-law apartment downstairs behind the garage, so we’ll move there and rent the main floor, a nice 3 bedrooms, 2 bathrooms house. We’ll pass the rent revenue to our friend the owner, who agreed to the plan, and thanks to more work and pay I was just offered by Evil Hat we should be able to catch up a bit at a time.
So for the next few weeks we’re selling, storing, giving away, or disposing of anything we can’t keep with us; trying to organize the apartment to be livable for two adults and three cats; clearing and cleaning the house; and dealing with various financial institutions. At least we can move a little bit at a time rather than having to do it all in one day, and we won’t have to change our address. I still need to find a day job, but at least I won’t be so desperate.
And I got a bit of good news last night: my heart and lungs are fine, I’m simply “de-conditioned” from months of health setbacks.
In all this, our many friends have been so very wonderful. If it wasn’t for them, we would not have been able to face this, to break it down into manageable tasks, or to find the necessary information and resources. We are so very grateful.
I did not have a good weekend. On Friday night after eating lightly, I started feeling the same abdominal pain I had felt in November from appendicitis. At the time, I was treated with antibiotics but warned that in 40% of cases treated this way, patients eventually still have to have an appendectomy. Hey, people buy lottery tickets for much worse odds! But this time, it had to go. I didn’t wait, I asked Edmund to take me to the Emergency Room where I was admitted, prepped (I’m currently on blood thinners so that means bringing my coagulation rate down), and operated on. Hurray for laparoscopy and highly skilled medical teams!
I was discharged today (Tuesday) and I had a collection of Kickstarter deliveries waiting for me:
So yeah, November could have gone better on a personal level, but it could also have gone worse. Late in the evening of October 31, I started feeling bloated, burping but without passing gas. I started headed for bed but sudden pain made me throw up. I took some acetaminophen and simethicone (anti gas medicine) and finally went to bed, but did not sleep well; I had pain on the right side of the abdomen. The next day, I would have liked to see my doctor but Edmund got sick too and I didn’t feel I could drive.
On Thursday December 2, I got on Kaiser Permanente’s online system and requested a phone consultation with my general practitioner, as I was worried about the possibility of diverticulitis. She’s super nice and called me back immediately instead of waiting for the appointment time. She listened to my tale and sent me to get a CT scan right away saying this sounded like classic symptoms of appendicitis. This revealed a prodigious stupidity on my part: I said, “Isn’t the appendix on the left?” Because, you see, ever since college biology classes I know exactly where various organs are and can point to them on a chart… which is facing me. Yup, the chart’s left is my right, yup, I knew that…
So we went to the hospital and the CT scan confirmed an inflamed and swollen appendix but revealed no abscesses, which was a good thing. I was sent to the emergency room and eventually admitted for a hospital stay. I was relieved to see that the surgeon who would be taking care of my case was Dr. Rhona Chen, who had performed my lumpectomy a year ago. She is great and everyone on the staff keeps saying she’s the one they request for themselves and their family. She is the very archetype of the surgeon, very smart, no-nonsense, fact-driven, stern, thorough. Dr. Chen diagnosed this as a ruptured appendix, but possibly a small rupture that had not cause fecal fluids to escape. the
Because I had been on coumadin (a blood thinner) since my pulmonary embolisms in February, and because the scan revealed neither abscess nor pooling fluids and therefore it was not a peritonitis case, the surgeon had me put on a heparin intravenous drip (an anticoagulant that is used for surgery, allowing higher blood thickness and thus reducing the risk of hemorrhage.) I also received high-grade IV antibiotics, and fluids because I was dehydrated and could not not be allowed to eat or drink in case I had to be rushed to surgery.
So yeah, the first few days were spent under close observation with three IV drips going at all times, waiting for my blood to get in the right anticoagulant and viscosity ranges. During that time, the antibiotics brought the inflammation down, the pain subsided, and after five days I received a new CT scan. This, and my blood test results, showed that indeed the inflammation was decreased. So Dr. Chen kept me under observation for a bit more but allowed me to have solid food, and changed my heavy-duty antibiotics to milder ones that could be administered only periodically, about 20 minutes of IV every six hours instead of nearly constantly.
After 4 days Im allowed hosp[ital food…
… which can be strange.
Freedom: so close and yet so far…
Rosie the therapy “schnoodle”
Although I still had to have all my intravenous catheters in place, I now had only one drip on for much of the time, so that was an improvement. And let me tell you, between constantly getting blood samples taken, and having to rotate the catheter locations due to bruising and vein collapse, I was a mess. My veins are small and crooked and “roll” easily, so it’s always hard to find a good spot. By the end of my stay at the hospital, both my arms were covered with bruises but at least the nurses did not have to start looking in other spots.
I was kept on heparin during the transition back to Coumadin because the other transition medication that is normally used, Lovenox, requires abdominal injections that get pretty sore, and could have masked abdominal pain from the appendix. Since the latter would have been a sign that surgery was needed after all, the hospital pharmacist did not authorize Lovenox and so I had to stay at the hospital until my blood was thin enough to prevent pulmonary embolisms.
Tales of the Arabian Nights…
… and Spirit Island
During my stay, Edmund visited me several hours each day and drummed up visitors and calls for me. We played board games, at first on my little table in the hospital room and later, when I was able to walk further (with my IV drips!) and needed less supervision, in the vending machine room where there are a few tables. Thank you to all my friends who checked on me!
At last I got out, in time so I could attend the monthly meeting of the Planning Commission (I’m a commissioner) and our friends’ annual Thanksgiving potluck. Still, the rest of November was a shambles and I’m barely beginning to catch up.
I had a check-in with my oncologist yesterday morning and she continues to be happy with my progress.
At our last meeting in July she switched me from tamoxifen (which works by blocking estrogen from binding to receptors in the breast) to Arimidex (which limits the production of estrogen altogether.) Tamoxifen is known to be an additional risk factor for blood clots and for uterine cancer, while Arimidex increases risks of osteoporosis and muscle and joint pain. In light of my pulmonary embolisms last February, my doctor (and I) felt the risk trade-off was logical.
I’m staying on Coumadin until and unless I become more physically active on a steady basis, at which point I could be switched to low-dose aspirine instead.
I will get my final MUGA heart scan in three weeks, and since all previous ones have been satisfactory, I don’t expect bad news. I will also be getting an MRI this fall, which will keep alternating with mammograms every six months for the foreseeable future (one of each a year.) That’s because of the dodgy genetic profile that suggest increased risk.
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…
As 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.
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.
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.