Friday, February 24, 2017

Updates from Healthcareland

Catching Up: Good

First the good news: No liver lesions, period. My brain MRI shows no problems, either. That's a relief, because one of my newer symptoms are visual migraines and they would totally freak me out if I did not know better. (Visual migraines are pretty, don't hurt, but do interfere with vision. They last 20 to 40 minutes then go away. I have no idea why.)

Catching Up: Bad

The official findings from the PET CT shows that I do have bone lesions in my spine at L1, T1, T3 and T5.  These lesions are seen as new since the last scan, but may have been there and hard to find. They are "sclerotic" meaning that they are thickened. It is possible that they are already healing. One in particular really lights up; the others not so much. As a result, we know that I do have bone metastasis, but their exact status isn't clear. Were they there and missed before? (There's mixed findings on that.) Are they healing or are they just lighting up because they are cussed and stubborn? 

A CT scan of a single sclertoic bone lesion on a lumbar vertebrae. It looks like a white spot on the vertebra.
A sclerotic bone lesion -- mine looked similar

We had two choices to proceed: either finish out the 6 rounds of Navelbine, Herceptin and Perjeta, or move right to TDM-1 or Kadcyla. I decided to finish this out, because it is clearly helping in the soft tissues: the radiologist thought I'd had surgery to remove one of the tumors. My oncologist added Xgeva, the bisphosphonate, to the regimen. That may help the sclerotic bone get replaced when it dies off. It is a more clinical version of Prolia. I'm happy to report that Ms. Side Effects seems unaffected, for once. Aside from being tired, I'm suffering few effects at all, and none that are new.

It's a balance

Another interesting discussion happened around my thyroid meds. My radiation oncologist agrees with me, both from his own observation and from some early and older studies. Those studies do indeed show that being suppressed (having heavy doses of thyroid medication to hold off my thyroid cancer) may encourage the breast cancer. I've said this all along; it is wonderful to have my doctor agree, rather than looking at me like I have horns growing from my head.

Let's pause for a word to my doctors:

Doctors, don't argue with me. Seriously! I get reality pretty fast and I don't miss much. It's like a part of my brain is always researching and gathering data. I read peer-reviewed studies and understand what they are saying. I understand statistics. I come to strong conclusions most of the time. Most of all, every point of my body gives me data. I pay attention all the time. I know what I say is true.

Here's more indication (although not causation, yet):  A link is observed in a Harvard study, but another effect is seen in China. It suggests that T3 (Cytomel) be administered instead. Hmmm. I feel like the evidence points to T4 being toxic (Synthroid, Levoxyl) but T3 may actually be better. Anyone know an expert I can get a second opinion from?

Now, back to our regular programming:

A road sign of a teeter-totter
The teeter-totter of treating my cancers

I need a fighting chance against this cancer, and it seems like the thyroid meds are making things much harder. I'm going to grapple this issue with my endocrinologist, but I sure wish they would all get together on their own. The studies indicate that being low on thyroid hormone improves breast cancer survivability. It does, however, leave open the possibility of waking up latent thyroid cancer -- and I'm likely to have just that. On the other hand, it's more survivable.

It's like being on a teeter-totter, and there may be no center of mass to balance upon. And I won't lie: I fear that this is the element that will kill me. I feel that resolving this is urgent.

And the seasons, they go round and round...

So, let's move to the carousel with the brass rings. Remember when I talked about the brass ring and work? So close, but fell off the horse because of this cancer? Well, I'm leaving the carousel behind entirely. This is it. I'm done. I'm heading for disability, probably in April.

I know what comes next for treatment won't be easy (I expect it will be much worse, in fact.) And this hasn't been easy. I have developed two UTIs, caught bronchitis, and developed a debilitating case of salmonella poisoning from trying to work. It's time to focus on health, and maybe an RV trip in between, to blog about America.
Child reaches for a brass ring on a carousel
Getting off this carousel horse in April, if all goes well.
 I need to move on and focus on my health.

Here's how this will work:

First, I will have six month's of short term disability. Short term disability pays my full salary. I will have health coverage and I keep my life insurance. If (and this is not an if situation) I cannot return to work, I will move to Long Term Disability. LTD expects me to apply for Social Security Disability, then compensates me for the rest, up to 66% and change, of my old salary. I get health coverage for six months more, then move to Cobra. We all know how useless Cobra is.

However, I should turn 60. That means I become eligible for a tiny government service pension and another great benefit: healthcare from the state of Michigan. So, with luck, I won't find myself without coverage.

If I do, I'm probably screwed.

I figured it out: I'm going to cost millions to survive. A conservative estimate is $4 million, but it's likelier to be $10 million or more! Million. With an "m." Insurance is not an option.

So many people did not know that the Affordable Care Act took care of so many concerns, even for people with regular insurance. I couldn't be fired for the cancer (I could now; no one will enforce the law. Thank God I work for a great company and they are being Ah-maz-ing about this.)

Before, I wouldn't be penalized for a break in coverage. That will almost certainly change in the near future: to get rid of the mandate that everyone have insurance, they will charge exorbitant insurance costs if you, say, become unemployed and lose coverage. Any break in coverage will cost you loads more. 

And let me be clear: I intend to spend every penny.  I will do what I need to survive. I'm needed, Mrs. Peele.

A rear silhouette of the Avengers, a spy thriller from the 60s and among my favorite shows.
We're still needed, Mrs. Peele

However, if I don't have continuous coverage, or if my insurance becomes too expensive (up to $18K annually, according to AARP) I may fall into a "high risk insurance pool."  Or a Medicaid block grant. Or something that puts all the sick people in one place. Let's be clear what that is: a Hunger Games-style death pool. Millions will compete for limited dollars.

Certain states have tried high risk insurance pools as a way of easing the burden on insurance companies. They are all failures, having been starved for funds in the face of overwhelming demand.

My care isn't special. My costs aren't out of line for mets. Currently, Congress has discussed funding the high risk insurance pool with $2.5 billion.  Experts say 10 times that won't be enough.

So what do we do if there's no coverage for metavivors? Read more  about high risk pools at NPR.

In 2017 in the U.S., there will be an estimated 1,688,780 new cancer cases and 600,920 cancer deaths.
source: American Cancer Society