More love for friends near and far

The cats disapprove.

This is another personal update post. I have not had much of a chance to keep up with social media and blogging, except in the most superficial way. Messages of support from caring friends have languished unanswered, to my shame.

We’ve been packing boxes, moving furniture, etc. Both Edmund and I are feeling our age, sigh. The cats are nervous, they hate change… I also work on keeping up with my game writing and publishing assignments since they’re my sole source of income. This Sunday, however, I gave myself permission to spend my writing time catching up with non-urgent matters.

Many kind friends have given us their precious free time to help with these chores. Some have provided their financial knowledge to help us straighten up our situation. Sean Nittner also set up a GoFundMe page—and people were wildly, extravagantly generous. So many people donated! I had no idea that so many people cared. This has been a life-saver.

Last weekend was a very busy one; we rented a truck and friends came over to help us move about 90% of the items going to storage, particularly the furniture: antiques from Edmund’s grandmother. What remains to move are boxes, which we take a few at a time.

The truck rental was a story in itself. I had reserved a truck from Budget Truck Rental in South San Francisco, the smallest they had that would have a ramp or lift; this turned out to be a 16-ft (4.9m) truck with a ramp. Instead of charging me, as advertised on their website, $29.99 a day plus $0.99 per mile, they charged me about two-thirds more: $49.99 a day plus $1.49 per mile, and gave me as a reason that this way, I was guaranteed a truck rather than taking a chance that it would not be available. Whatever that means.

I showed up right on time on Saturday morning—and sure enough, my truck was not there. Whoever had rented it before me had not returned it. There was another truck, a 26-ft (7.9m)  with a lift gate but they wanted to charge me more money for it. I was very displeased but I remained polite, if a bit brisk. I got on the phone and called competitor Penske Truck Rentals, a couple of blocks away, where the helpful personnel immediately found me a 16-ft truck with a lift gate AND quoted me a price that was lower than Budget’s, AND then gave me another 10% discount because the cabin had not been cleaned yet and was a little grungy.

As an epilogue, Budget had the gall to run a $50 cancellation charge on my card so I had to spen half an hour on the phone later in the week to get that reversed. It’s what we’d call, back home, “Sévices à la clientèle.” So F U, Budget, I’m never darkening your door again.

Double-decker hatred.

We’re not finished moving into the small apartment, formerly known as the gaming lair, because there’s a sequence that goes: clear space downstairs – take items removed to storage/sale/donation – move object from upstairs into new space downstairs – clean upstairs. Right now we need to clear more space in the apartment and the garage so we can finish setting up our living quarters.

We also still have a bed and dresser to bring downstairs once space is available, and a replacement fridge to move from the garage into the apartment. Good times.

This week the priorities are: schedule visits from a plumber and from a debris removal service; take boxes to storage; buy more boxes and fill them with the remaining items going to storage.

Hard times and good friends

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.

Catch-up post: November behind us

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.

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.

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.

Post-cancer update: Heart and Mind

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.

So no cancer-related health problems right now, and side effects are being monitored. I feel well cared-for, as usual.  Continue reading “Post-cancer update: Heart and Mind”

Emerging from the fog

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!

 

 

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.

Third Base

cancerrbThis 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…

Acertificates 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.

hair_regrowingIn 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.

Preparing for chemotherapy

Cancer constellation in a circleIf you have been diagnosed with cancer as I was in March, you may face the prospect of saying yes to chemotherapy — and going from whatever aches and pains you’re currently dealing with to several months of misery in the hope of killing cancer before it kills you. Here are some things you can do to prepare so this awful time can be weathered as well as possible.

Get help

You will need help, and for many of us, it’s very hard to ask for help. So think back on the times friends or family needed help, and how you wanted to be able to do something, anything. Tell the people around you what you need. Some will be able to give one small boost, and it may be just what you needed at the right time. Others will be incredibly generous, and you will feel awkward about it. That’s okay.

And yes, a few may be clumsy, overly directive, or factually wrong about the way they try to help you. Don’t take a friend’s miracle cure over your oncologist’s directions, and don’t let a well-meaning relative kindly bully you into anything. But accept the love that inspires this wrong kind of help.

Things you can get help with: Continue reading “Preparing for chemotherapy”

I stand with Planned Parenthood, in mourning

I-standCan you imagine?  When I show up at my work place, I’m worried about how the company is going to stiff me again today.  When workers of women’s health clinics show up for work, they’re worried about whether someone will try to kill them.  And patients!  You go to the clinic to help make your life better or at least keep it from getting worse — and now you have to weigh whether this means being taken hostage or gunned down.

Responding to my adoring audience

D716IWCLegalAbortion1977My previous post explained why I stand with Planned Parenthood on Pink Out Day, so naturally it had to attract ridiculously offensive comments from people who have never read anything I’ve ever written, including that particular post.  My initial reaction was, of course, to hit the delete button.  But I’m feeling in a pillory mode, so instead I will post the comment in its entirety, unaltered, and then I will respond.  Because sometimes all you can do with a dog that pees on the carpet is roll up a newspaper.

Mary

The commenter wishes to be called “Mary” — this is not private information since it would have appeared with the comment if I had approved this submittal. Of course, I believe in calling people what they want to be called (except for Republican politicians who want to be called “President,” right now I’m very much against that.)  But to be honest with you, when I read Mary’s post I see the weird old guy with a bazillion surreal signs, religious tracts, and plastic Virgin statues like lawn gnomes who’s always hanging out in front of the local PP clinic.  Let’s call him “Mary”, shall we?

The author of the comment uses an email associated with a church volunteer in a Midwestern state, itself accompanied by a phone number from Cheyenne, Wyoming; the full name associated with this information is common to 19 white pages listing in the church’s Midwestern state, most of them elderly, and several of them recently dead; and the comment was posted from a mobile IP registered in a different Midwestern state.  So really, this could be a prank, a real person, a pseudonym, an identity theft, etc.

Here is what Mary had to say to me:

Do not trust birth control handed out by a company that makes its money off conception. Do not trust anyone who thinks your baby is better off dead. Do not trust people who will slice your baby into the most valuable cuts and sell them. Do not trust a business that must do a certain # of abortions to provide pay checks to its workers. PP sees us coming and sees $ signs. Factory farming of women and children. Livestock. Planned Parenthood cares about women and children the way farmers care about breeder sows and piglets. Wrap all this gut-sucking and baby mutilation all up in pink to look innocent and good? No- just bloody.

All righty, Mary.  This is going to take some unpacking; there is so much rolled up together.

The Medium is the Message

Let’s break this down in smaller bites so we can fully appreciate it.

Do not trust birth control handed out by a company that makes its money off conception.

Nice start!  You’re saying that Planned Parenthood is doing what, giving fake contraceptives? Is that what you’re saying? Because I can tell you, the stuff comes in the manufacturer’s wrapping, all sealed. You’re so desperate, you won’t even cite a third-hand anecdote to back this up?

Do not trust anyone who thinks your baby is better off dead.

What baby?  The live babies I saw going in there were cared for — all too often for free since the parents are only there because they have no health coverage.  Oh, you mean the small mass of non-viable cells I might decide to have removed from my uterus before it becomes a real baby that I would be unable to care for?  That baby?  Mary, it’s as much a baby at that point as a pinecone is a tree.  Even a really nifty pinecone is not a tree. An egg, even a fertilized egg, is not a chicken.

Do not trust people who will slice your baby into the most valuable cuts and sell them.

You don’t have a whole lot of familiarity with your topic, do you?  What is it you picture, a rosy ham carved spiral-style?  If you mean stem cell culture, we’re talking about getting a few cells from the egg or the pinecone — or in this case, the tiny blob of reddish jelly, to grow them on glorified agar plates. It’s too small to slice, see? Also too small to be a human being, let alone a viable one.

Do not trust a business that must do a certain # of abortions to provide pay checks to its workers. PP sees us coming and sees $ signs.

Oh, you betcha!  That sweet, sweet reproductive health care cash!  All those Benjamins they collect from, uh, giving away medical examinations, classes, laboratory testing, vaccinations (oh wait, that’s evil too, isn’t it?), contraceptives, and referrals to battered women’s shelters.  Boy, they sure are rolling in it, as I can readily see every time I go in there.  That 1970s office furniture — don’t let the looks fool you, you can’t get that stuff for love or money these days!  Priceless antiques!  The jobs at 60% of what the health care workers would be making in private practice?  It’s a cover!  All that money is ferried to the Cayman Islands on steamers entirely powered by the combustion of baby corpses.

Factory farming of women and children. Livestock. Planned Parenthood cares about women and children the way farmers care about breeder sows and piglets.

Unlike, say, religious people who think sex should only be for conception, and women should be at home producing children.  People who think abortion should be outlawed even in cases of pregnancies that put the mother’s life at immediate risk, or force her to carry for weeks a fetus that is non-viable, or even already dead. Totally.

Wrap all this gut-sucking and baby mutilation all up in pink to look innocent and good? No- just bloody.

Ooooh! Was this an attempt at allegory?  Alas, what you gave us was bathos instead.

Reading is Fundamental

I do love how this paragraph, this collection of non sequitur, was thrown like a plateful of noodle (rAmen!) at the wall to see what would stick, but really had nothing to say about my post.  It had to do with the words “Planned Parenthood”, not with anything else I had written.  Mary, if that’s all you get from your readings, I recommend Twitter; it will be less effort for you.  Heck, I’d like to make your life easier, you seem like you can use a break.  Why don’t I just give you some writing prompts for the next writer’s block:

  • Sex education
  • Social justice
  • Wage parity
  • Single-payer health care
  • Marriage equality
  • Free child care and preschools
  • Maternity and paternity leaves
  • Access to contraception
  • STD screenings
  • Recreational sex
  • Teaching consent
  • Secular humanism
  • Living wage

Just pick whatever frightens you most, and write me another essay.

I will leave you with a reading assignment: The Horrifying Reality of Abortion Before It Was Legal in America.

Edit: And here is the follow-up reading assignment: Real stories of late-term abortions.


Credits: Photo by Dorothy Marder, taken at the International Women Year National Conference, Houston, Texas, November 18-21, 1977