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Shifting tides

It's hard to summarize how I'm feeling today, because my feelings are all over the map. Last night I was feeling weepy and grateful for the many awesome people -- family, friends, co-workers, and medical staff -- who have given me support during the current crisis. Today I'm feeling angry, frustrated, and impatient about the complicated, protracted, and difficult problems that are still on my plate. So allow me to vent a little.

First of all it's been more complicated than I hoped to get a counseling session set up to talk about how I'm feeling about having my life turned upside down, not to mention threatened with extinction. A referral was sent in last Thursday, and they were supposed to call me about it by Monday. When I hadn't heard back by Tuesday, I called them and was shunted to voicemail. If I haven't heard from them by tomorrow, I'm supposed to sic Gaia on them, but I've gotten to the stage of fatigue and sickness that riding herd on any of this shit is not what I want to be doing.

Which brings me to the UW Benefits Office. Those jerks have *still* not responded to the email message I sent over two weeks ago, or the follow-up phone call I made over a week ago. I've finally started asking around for a lawyer, and of course that ends up being a complicated and protracted process in itself.

I think at this point I need to let go of the idea that I'll get therapeutic or legal counsel before I leave town at the end of the month. It'll most likely have to wait until I get back toward the end of the March. It's maddening to me that I have to delay my decision about retirement, but it is what it is. I just can't let myself get wound up about things I don't have much control over. Then again, I got word from a friend today that a lawyer is possibly looking into my situation even as I write this, so who knows?

In actual health news, after my blood labs on Tuesday I got a call from one of the nurses telling me that my platelet count was below the safe level and that I should therefore stop taking the chemo. I've only got four more radiation treatments left (HOO-fucking-RAY!), so I was confused what this meant in terms of completing the chemo side of things, particularly since I've already made extensive plans based on the idea that I'll be done with the first phase of treatment on the 24th (next Wednesday). From what I was told after my radiation session this morning, it's possible (maybe even likely) that I'm done with chemo for this treatment phase. Since stopping the chemo has already made me feel slightly better, or more like slightly less bad, I'm all for that as long as the medical experts think it's okay.

However, one complication from this is that I may need to put my tattoo on hold. Platelets have to do with blood coagulation, so if I don't get my levels up before March 6th, I probably shouldn't have the tattoo done then. And the chemo nurse, Carrie, said that if we have to push it off, we'll need to discuss whether I'd have enough time to heal my tattoo before starting my first five-day session of chemo in April.

On the hell-if-I-know front, the other thing I learned this week concerns the Optune. This is a device we were told about the day I got my diagnosis that you wear on your head at least eighteen hours a day and that attempts to electromagnetically interfere with the mitosis of glioblastoma cells. Dr Mrugala, who told us about it initially, was very enthusiastic about the prospects of the device, but when we read the pamphlet about it, we read that it was only used in cases where the tumor has returned.

What we learned this week from Carrie is that starting about four months ago the FDA approved using it for people right away, even in conjunction with the second round of chemo. So we filed paperwork to see if my insurance company will pay for it, and I've already received a wad of documentation on how to use the device. It now seems entirely possible that I'll start using the Optune (which always makes me think of PIL's "Poptones") almost immediately. Both Carrie and Dr Halasz say that the results they're seeing from the Optune are incredibly encouraging, so I'm kind of excited about it, even though having to wear this thing all the time will no doubt have some disadvantages. Shamefully, I can't wait to post the first selfie of myself wearing it to Facebook! Please excuse my shallowness.

But this also raises the unfortunate specter of what will happen if I can't keep my current health insurance if/when I retire, so it's ... complicated.

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Comments

( 10 comments — Leave a comment )
holyoutlaw
Feb. 18th, 2016 10:25 pm (UTC)
Too much complication!
(Anonymous)
Feb. 18th, 2016 11:04 pm (UTC)
It is really complicated. I can only pass in the best advice i ever got which was if at all possible dont make irrevocable decisions while impaired. So maybe tattoo later, decide about retirment later. I know thus may not be feasible. But.
randy_byers
Feb. 18th, 2016 11:27 pm (UTC)
This is sensible advice, complicated by the fact that I may die sooner than later. There's a certain urgency to some of these decisions, particularly regarding retirement. But certainly waiting until this first (and worst) phase of treatment is over before I make too many decisions is probably not a stupid idea.
kate_schaefer
Feb. 19th, 2016 12:44 am (UTC)
Having watched people go through difficult medical stuff with varying outcomes, my unsolicited advice is, stay employed as long as you possibly can. Take as long a medical leave of absence as you can. If you live through this, get better, and return to work, the leave of absence preserves your length of employment and keeps you from having a break in service, which could be important for your eventual retirement benefits.

If you live through this, get better, but don't return to work, it will postpone the point at which you switch over from employer-supplied coverage to COBRA.

Many years ago, when Glenn left Microsoft for his health the first time, our financial advisor strongly suggested that he take a medical leave of absence rather than just quitting. We have regretted ever since that we didn't take that advice; it would have made a huge difference when Glenn eventually did return to work. We're okay, but we would have been more okay had we taken that advice.

Do you have the option of having co-workers donate vacation weeks or sick leave weeks?
randy_byers
Feb. 19th, 2016 12:51 am (UTC)
Thanks, Kate, this is all incredibly useful. Yes, co-workers can donate leave once I've burned through mine, which I think will happen sometime in March. I'm not sure how much more time that will give me, but I'm guessing at least another month, maybe more, maybe even much more. The way things are going, I'll probably need that time to figure out what I'm doing next.
kate_schaefer
Feb. 19th, 2016 12:58 am (UTC)
You're in the position of having a decent chance to beat the odds, so you need to plan to survive and have a life, while still hedging in case you irritate us all by going ahead and dying. It's a tough set of things to juggle. I'm glad you made the travel plans, so that whatever happens later, you're doing things you enjoy now.

Well, not now now, during radiation, but soon.
gerisullivan
Feb. 19th, 2016 07:31 am (UTC)
Fabulous "Here's Real Life and its Attendant Frustrations" post, followed by equally fabulous comments. That kate_schaefer sure is smart.

Me, I'm rooting for your platelets to bounce back up to treatment- & tattoo-approved levels super quickly.

If it helps, remember this mantra: "Deep breath in, deep scream out."
randy_byers
Feb. 19th, 2016 01:56 pm (UTC)
Don't know how hopeful to feel about the platelets, but we'll see.

Deep breath in, deep scream out.

I like it!
voidampersand
Feb. 19th, 2016 08:14 am (UTC)
Maybe you could get a henna design.

Hang in there. Remember, the ray guns are pointed at the BEM, not at you. You're the scientist's daughter.
randy_byers
Feb. 19th, 2016 01:57 pm (UTC)
Awesome. I always wanted to be the smart one.
( 10 comments — Leave a comment )

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