Pinky Pie

Tuesday & Me

Posted on: November 10, 2016

Well, Tuesday was a hell of a day and not just for me. I do think one disaster at a time is enough for me to consider at this moment. I’m saying this with a smile, although it may not read that way.

Let’s just say that my day began at 5:30 a.m. with MRI scans that took forever and ever, like a couple of hours. It is very hard to stay still for that long of time. Trust me on that.

Than we came back for the 1:40 appointment with the oncologist who told me the results — my brain is as empty as we hoped and we’ve all known it to be all these years. Whew! What a relief!

BUT, and this is the big BUT, there is a tumor on my spinal cord, which means if not treated, I could become paralyzed. Which means I needed emergency radiation treatment. Complicating this all is my discovery on Monday that my cheap insurance through work does not cover radiation or chemotherapy.

I saw the radiation oncologist that afternoon after Mayo Charity Care came through in a big way to pay for the radiation – not all but enough to get radiation started.  Charity care? Me? Never expected that in my life.

Before radiation treatment could begin the next day I needed more scans to make sure there were no more tumors on my spinal cord and in my neck. Again it was two hours because whenever I swallowed, moved or whatever, I had to have  those extra “pictures,” as they called them.

The radiation therapy is pretty benign while you are getting it. A few minutes once set up and them you get to go home.

Also helpful was Mayo Special Pharmacy in Rochester,  which has arranged for me to get the $10,500 a cycle drugs to treat the cancer, which I wil not start until after I finish the ten days of radiation. These drugs come from Rochester by FedEx (any time now), although I suggest a Brinks truck instead. I am getting a “free trial” and then heavily discounted drugs until I can get on a better insurance plan as of January 1. And, let me add, the plan I will get on is so much better than what I had.

There is no comparison with my current plan and the one i found on the National Marketplace for Obamacare. I just need to survive financially until January 1.

 I always thought that household finances are what counted toward the subsidy for the Affordable Care Act so I never thought I could get one. As it turns out when I called Monday after getting the bad news about not paying for chemotherapy, it is only my income that counts since Dick is already on Medicare. I will not be on Medicare until October 1, 2017. At this point, my income will be from Social Security, and short term disability if approved.

Meanwhile I am on steroids for about ten days. I know this potentially leaves me out of the Winter Olympics in 2018, but frankly I never was much of a skier or ice skater – I do remember a time after  dislocating my kneecap attending a birthday party at a ice skating rink. I spent the time eating snacks. Shoveling in snacks. I don’t know  if the winter olympics has added a concession event, but if it did, I don’t think I would win that either. I don’t have that much of an appetite.

Two insurance issues come to mind:

1. Read the damn policy before signing up for it. Who in the world would think a policy would not cover radiation and chemotherapy? I take responsibility for this mistake. There is no one to blame but myself. There were other options, but I am afraid I went for the savings first.

2. Don’t assume you aren’t eligible for a subsidy, depending on your circumstances. I will as of January 1st be getting one. I will join $16 million plus covered because of the ACA.

I got a good night’s sleep last night – pain free – for the first time in a couple of months. It is always darkest until the dawn, I always told my kids. It is true, although just sleeping was a very big help not to mention those steroids.

Thank you all for your support. I can’t tell you enough how much it is appreciated.

Love to you all and your friends and family.

And speaking of the election, or not, let’s just say that the concession speech of Hillary Clinton was the most powerful and important but sad. As she said, we are stronger together. I can say that as a country, as a world, and as individuals, “we are stronger together.”

I sure know it.

Watch the speech or read the transcript if you can. Google it. For some reason, I can’t make the link paste in. Fiddle dee-dee.






5 Responses to "Tuesday & Me"

Well you had a hell of a Tuesday. Thankful that they identified the lesion in your spinal cord and for the generosity of the med center to get the care you need. It is beyond me that insurance would not pay for chemo or radiation.

You are a tough strong woman. Gloves on…..knock out punch. I am in your corner with prayers. If I can do something let me know.

Oh, Sue. Carrying you in my heart.

I so appreciate your update Sue. I’ve never heard of insurance that won’t cover cancer treatments and I am glad there are organizations that can help in these circumstances. I am also glad for an empty head (yeesh) and that the problem has been identified and a plan is in place. Your loyal fans are here for you!!

Love you beyond words, praying fervently and so glad that the financial support is coming through!

Hey there, courageous one. Erin says, “Hello,” from DC. We’re just down the street from you- know- who’s new residence. (Really-if we walk just a few blocks down 16th Street, we can see Russia, I mean the White House from here- I guess it’s the same thing now.) We are all pulling for you, and in this case, the popular vote is all that matters! Much love- Nance

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