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. 

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

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.

Third Base

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.

Preparing for chemotherapy

If 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:

I stand with Planned Parenthood, in mourning

Can 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.

• RH Reality Check: “Threats Against Abortion Providers Have Doubled Since 2010, Report Finds”
• The report itself, Feminist Majority Foundation’s 2014 National Clinic Violence Survey (PDF)
• U.S. Department of Justice: National Task Force On Violence Against Health Care Providers
• United Nations Population Fund (UNFPA): Addressing Violence Against Women And. Girls In Sexual And Reproductive Health. Services: A Review Of Knowledge Assets (PDF)

Responding to my adoring audience

My 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.

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

Pink Out! I stand with Planned Parenthood

Tomorrow (September 29) it’s Pink Out Day in support of Planned Parenthood.

First, let me tell you why I stand with Planned Parenthood, using two excerpts from my journal, just over three years ago when I had no health insurance and was unemployed and flat broke. The people I described were the ones I saw and spoke to, not conceptual entities.

June 18, 2012

Thank you, Planned Parenthood. You were there for me many years ago when I was a penniless student, and you’re here for me again when I am unemployed and have no insurance. Thank you, thank you, thank you. I’m glad a regularly donated when I was employed, and I will again when I am employed anew.

Right-wingnuts: fuck off and die. You’re not doing a damn thing to help me, or anyone else who was in that waiting room: the mother with two infants, the menopausal lady worried about her surging cholesterol, the happy, giggling expectant young couple, the two young women there to get their first birth control prescriptions, etc.

June 25, 2012

I went back to Planned Parenthood for my follow-up today. I don’t know if I’m just lucky, but everyone is always incredibly nice and helpful to me in PP clinics (well, the two I’ve ever visited.)

I tend to think that it’s not luck, that it takes a special kind of people to work there with the crazies picketing every day and probably paid less than in private clinics. Many of the people I speak to have worked there forever and a half, so it’s not like they just jump on the first chance to work at a safer, more posh place.

And it nags me, bugs me, burns me to think that these incredibly nice people who help me are placing themselves at risk, that there is a very real possibility of a nutcase harming them for helping me. That’s fucked up.

That’s right: Planned Parenthood charged me nothing for the health services it provided. And yes, as soon as I had a regular income again, I resumed donations so others could benefit.

Now for some tips on showing support (besides the obvious, donating to Planned Parenthood):

5 Ways You Can #PinkOut

On September 29th to show your support for women’s health and for Planned Parenthood

1. WEAR PINK on September 29th. Get a #StandwithPP pink t-shirt from the store.
2. Pink Out your Facebook and/or Twitter profile image
3. Attend a Pink Out Event near you. Can’t attend or not near a rally city? RSVP to the Facebook event for updates.
4. Join the #PinkOut Thunderclap
5. Share a #PinkOut selfie to #StandwithPP on social media

On Abortion

While the vast majority of services provided at Planned Parenthood are not related to abortion, I don’t want to dodge the issue. I’ve seen a lot of outrage about right-wingers who refuse to compromise on abortion even for special cases.  You know what? When they say that they’re against abortion in all cases, even rape, incest, or to save the life of the mother — that works for me, in a weird way. Abortion is legal, there are very good reasons to keep it legal, and I don’t want to see it chipped away by downgrading it to only special cases deserving the protection of the law.

Let’s recognize right now that we need not make apologies: no one is is suggesting that abortion is a fun thing, something every woman should try at least once, or something we should have punch-cards for (“Buy ten, get one free!”) Having to have an abortion sucks enough as it is — heck, having to consider whether to have an abortion sucks enough, that we need not make apologies for having a legal procedure when we, the persons who are having to make the individual decision, find it necessary.

Downgrading abortion from a right to a conditional procedure you have to get special dispensation for only opens the way to have access to contraception restricted in the same way.  We’ve had plenty of evidence recently, from right-wingers’ opposition to sex education in schools, to framing their attempts at restricting contraception through health insurance plans as a religious freedom issue.

And Violence

I mentioned in my old journal posts that the people helping me were putting themselves at risk.  Although I did not see any sign of violence, every time I have been to that clinic I have seen a fanatical picketer, a man bringing his entire collection of signs, religious paraphernalia, threats disguised as predictions, and so forth (and there have been more visits, both before and after the ones that prompted my journal entries).  Imagine being intimidated every day, every time you go in and out of your place of work!

• RH Reality Check: “Threats Against Abortion Providers Have Doubled Since 2010, Report Finds”
• The report itself, Feminist Majority Foundation’s 2014 National Clinic Violence Survey (PDF)
• U.S. Department of Justice: National Task Force On Violence Against Health Care Providers
• United Nations Population Fund (UNFPA): Addressing Violence Against Women And. Girls In Sexual And Reproductive Health. Services: A Review Of Knowledge Assets (PDF)

A Visit to the Doctor

I went to a new doctor last week because I had run out of my two prescriptions for blood pressure and water retention.  They drew some blood as part of the routine check (always fun to pay for all of this, because of course I don’t have any health insurance anymore.)  This morning I received a call from the clinic asking me to come in to speak to the doctor and get my results.

Well, you know how it is: if everything is fine, you never hear anything; if there’s a flag, they call you; if they ask you in, it’s usually because you’re about to fall apart, so I was not delighted to get the call.

So I signed up for the 1pm appointment as I’d rather not wait for bad news.  Edmund decided to accompany me because he was worried and we drove the 17 miles there (just under 30 km).  When I walked into the waiting room a few minutes early, there was one patient being seen and another waiting, so I knew I’d be there for a little bit, but it didn’t seem too bad. (Continued after the cut.)

Feeling virtuous

I caught a rapid bug that flared up on Friday, going from “sore tonsils” in the morning to “I can’t breathe” that night. I spent most of Friday evening and Saturday in bed, and the rest reading comic books. But yesterday (Sunday), I got up at six and studied all day, doing problems for the hated seismic design exam. It would have been better if I’d studied both days, but I ways really out of it on Saturday — for that matter, I still feel like chopped tofu (i.e., even less appealing than chopped liver.) But I also feel reasonably virtuous.

(Is virtuous more or less appealing than chopped tofu?)