Merci, Gracias, Todah, Thank You

…for your kind words and good wishes. I know they are heartfelt, and I return them to you a hundred-fold. Some readers who are not comfortable adding a comment (or haven’t figured it out) have sent notes that also mean so much to me. You lift me up on a cloud of kindness and my aches and pains seem to disappear.

You’re all making me out to be much more noble than I am (which is: not at all) but I’m going to simply enjoy the view from the cloud. I will continue blogging, at least for a while, and when I do sign off, I will leave the blog up in hopes that there is something helpful for other cancer patients. Thanks again,
The Coot

Buckle Up for The Medicare Labrynth

I’ve spent the last two days on the phone with the friendly folks at Medicare. Seems I’ve been on disability long enough that I’m eligible and — unless you tell them, “no thanks,” — they sign you up automatically.

So I spent a half day wading through Part A, Part B, and the exceptionally confusing Part C, and a day and a half on Part D, which is prescription drug coverage. It has got to be the greatest shame ever foisted on the American public, and I defy any Congresspig to explain it to their grandchildren. Of course, they couldn’t. How on earth did this debacle, this tragedy, this bloody abortion of a prescription drug plan ever get passed? It boggles the mind.

There are prescription-drug-only plans and prescription-drugs-plus plans (which may include vision or other coverages.) After providing a list of my daily meds, the Medicare Rep told me about what the computer says is the best plan for me. But one drug was in dispute: I said there was no generic equivalent, the computer insisted there was. Many phone calls later, I prove I am correct, but the computer won’t let the agent (a different one, of course) override the generic option. Of course, there has to be a way, I insist ten times. After the eleventh plea, Ms. Helpful finally talks to a supervisor and finds there is, indeed, a way to do so. And the chip on her shoulder grows exponentially.

Now I have a new price for the recommended plan but, she explains, it’s only good until I hit the infamous “donut hole.” (I won’t even try to explain this to you, even though I finally understand it, although I still don’t understand whether the criteria for reaching it is based on what I’ve spent or what Medicare has spent.) But yesterday, I say, I was told this plan has no donut hole. Every plan has a donut hole, Ms. Helpful insists, and not five minutes later, she’s trying to explain a different plan which has no donut hole. I just don’t have the stomach to point it out.

After getting off the phone and doing lots of calculations based on information that may or may not be correct, it appears that my DieSuckah Health Insurance policy is actually very close to my true cost of Medicare. And at least I’ve met my deductible for the year, and at this point I know what is and isn’t covered — including that disputed prescription which I take daily, which doesn’t have a generic, and which, until I hit the deductible, costs me $500/month.

(This is true now, but I will be getting my annual premium increase in April, which has been running close to 20% per year, in which case, Medicare probably will be the better option. But — get this — if you don’t sign up as soon as you become eligible, the Part D premium goes up every month. Sooo… it’s impossible to know which will be the better value in 60 days.)

I’ve wasted two days of my life just sorting it out and coming to this conclusion, although as I said, I don’t have much faith that I’m basing my calculations on correct data. Oh, boy. Who would have thought — it seems our friends in the federal government may have provided me a raison d’etre after all.

My new goal is not only to campaign for health care reform, but to strip our Congresspigs of their gluttonous plan, which includes donations to their election campaigns, luxury travel, and complete health, vision, dental, botox, shoe shines, massages and prescription coverage for themselves and their families, staff, neighbors and acquaintances, for their whole lives and at least one afterlife. It doesn’t seem fair, does it?

Big C Update

I’ve put this off for more than a month, folks. It’s like a tape I could just play for you over and over. But this time, there’s a new twist.

The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it’s the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I’ve already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I’m pretty sure this “cure” would kill me.

Being a good girl, doing as I was told for the last two years — especially when it was contrary to all my instincts — has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn’t seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn’t see the need, I did get a second opinion this fall. I’ve been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I’ve decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I’ll be switching to what they call “palliative care,” which is just treating the symptoms as they arise.

I’m hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I’ve still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don’t improve a whole lot from where I am today, just knowing that I don’t have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I’m finally giving in to that inner voice, and it’s telling me to choose quality over quantity.

As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.

If you happen to disagree with my decision, I don’t really care, so please have the manners and good grace to keep it to yourself.
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P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the “best possible outcome” has changed a little. MM patients and their loved ones don’t need the details of my particular situation, so this is my last MM post.

Endless Winter

This is one of the longest cold spells I can ever remember here. I’m not sure of the exact number of days, or the official snowfall totals, but I believe it’s been below freezing for about a month. And we’ve had 4-5 snowfalls of at least 4-6″. We still have about 8″ of snow on the ground most places. The main roads are clear, but the side roads are icy and treacherous. There’s no end in sight right now: we’ve got at least another week of below-freezing weather predicted, and another snow coming this weekend.

It’s not much by Minneapolis standards (or even my hometown), but in these parts, that’s a lot. And being mostly housebound means I’m completely without excuses for this mess…

(Cousin #3 & Sis bundled up for sledding.)

No Joy in Snowville

Our Colts pranced all the way to the Superbowl only to get whupped, and whupped hard. I’m not a rabid fan, and I don’t mind losing, but boy, it honks me to lose to a team called The Saints. First of all, with a name like that, shouldn’t they win every freakin’ game? And I know they were named before the Age of Political Correctness, but I’m sort of surprised the name has lasted this long. Sour grapes aside, there’s no question that they played the better game and deserved the win. It was nice, though, just to get that far and make it to the SuperBowl.

Another local team is getting some notice. The Butler University Bulldogs have won 12 in a row. In fact (I’m sure someone will correct me if I’m wrong), I believe they’ve made it to the Sweet 16 the last few years. I’ve got a soft spot for the team and the school – it’s Dad’s Alma Mater and the site of Mom & Dad’s meeting. So… Go Dogs!

Bats One and Two

I embarked on some painting and remodeling shortly after moving into the Villa. I had a guy helping me, and one evening I noticed he’d left a dirty little rag on one of the cupboards. That wasn’t like him — he cleaned up every day before leaving — and right before I touched it, I noticed this dark little rag had a face!

I called a friend who lived nearby. “Save me from a little critter!” I said, clearly implying that a Real Man wouldn’t leave a damsel in distress. He came over, we made a net out of a pillow case and a hanger, and sure enough, he was able to gently scoop the bat in, and take it outside to release it. The friend moved away shortly thereafter; I’m sure there was no connection. Yah.

Three years go by. I was in the living room watching tv with a guy I was dating; we’ll call him Milton. Suddenly a little bat swooped across the room in front of us! My dog and I ran for the bedroom with Milton at our heels. “Wow,” he said, “What are you gonna do?” he asked. Is he kidding? As I shoved him through the door, I said, “I’m going to wait here while you get rid of it!” (What is it with guys nowadays? They have to be goaded into chivalry.) Many minutes of grunting, running, panting, and cursing went by. He finally knocked on the door, and I opened it to find him puffed with testosterone.

“It’s safe to come out now,” he said. “I think it flew out the window.” “You think it flew out the window? Or you know it did?” “I’m sure, come and look. He’s gone.”

It was gone. That should have been the end of The Tale of Bat Two. But it’s not. Fast forward about five years. My parents are again visiting, and we’re watching Antiques Roadshow. My dad commented that he’d always wanted to learn more about Grandma’s Big Vase, which has sat on top of my corner cabinet since I moved to the Villa. He thought it was worth a lot of money.

“No, Dad,” I protested, “I’m almost sure that it’s post-war Japanese. I don’t think it’s that old.” “Let’s see if there’s a mark on it,” he said, and pulled a chair over to reach the vase. As he tipped it upside-down to check for a manufacturer’s mark, out tumbled… a skeletonized little bat.

With gloves, plastic bags, and manly bravery, Daddy made the little skeleton go away. I had to endure just a tiny bit of teasing about my housekeeping skills. But I haven’t looked in the Big Vase since then, and I’m sure not going to now.