Dec 11

Study Time Is Over

12-11-2013 – Had another visit to the Karmanos Cancer Center in Detroit a couple days ago, on Monday, the 9th.  It was a VERY early appointment this time, 9:AM.  I tried to reschedule it for a later time, but they couldn’t work it out, so we were stuck with it.  That meant that we had to leave the house in Northern Michigan about 3:AM to make it there in time, so that’s what we did.

I’d set the alarm on my phone to wake me up at 2:AM, but it didn’t go off for some reason.  Turned out that my phone needed a restart.  Anyway, mom called me from her car when she got here to pick me up, and that’s what woke me up.  So I told her to just come in while I tried to rush so we could take off.

That early in the morning, the snow plows here in Northern Michigan haven’t started working yet, so the roads weren’t in the best shape for driving; Covered in a thick blanket of snow.  The good news is that there wasn’t very much traffic out there except for us.  The highway was hit and miss the whole way, with thick patches of snow in some areas, white-outs of blinding snow in others, and a few clear patches in between.  The few other vehicles on the road were going pretty slow, and they kicked up a lot of blinding snow, so I carefully passed them as quickly as I caught up with them.

By the time we got down to about Gaylord, some plows and salt trucks were out, kicking up a ton of blinding snow clouds behind them and slowing vehicles behind them, which were starting to build up as folks woke up and hit the roads to start their day.  After Grayling, the roads cleared up pretty good, as is usual.  Grayling seems to be the invisible weather line up here.  North of it is the deep and wild stuff, and South of it is the clear roads, if there are any.  So, it was pretty clear sailing past Grayling, and then night slowly gave way to morning light as we headed toward Saginaw.

Everything from there was pretty smooth until we hit the morning traffic around Pontiac, and being their first snow of the year down there, and a Monday, traffic was just about crawling, going 20 to 30 MPH slower than the speed limit on what were, by our standards up North, pretty clear and open roads.  That was kind of frustrating.  And the closer to Detroit we got, the worse it got.  Eventually, we got into the morning commute Detroit traffic jam going 5 to 10 MPH, for about the last 10 miles of the trip.

We got to Karmanos at just a little past 9:AM, handed off the car to the valet service, and headed in.  I checked in and we sat down at a table in the waiting room, and I barely had time to open up my tablet, when my name was called.  I weighed in at 212 lbs (gained some), and then gave 6 vials of blood.  Then we plopped down in exam room 27 to wait for the doctor.

Colleen, our coordinator came by first, and told us that the Ibrutinib Study was now over, as the FDA has now approved the drug.  It will now be commercially available and we’ll soon be able to have it sent directly to my house from the company that makes it.  She needed me to fill out some forms about that stuff and said that they’d have to coordinate with my insurance company to make that all happen.

And that’s when it all hit me in the face again: Medicaid and my spend down.  I explained about the problems I’ve been having with Medicaid and the ginormous spend down I have every month that makes it impossible to deal with costs on my end.  She said the Ibrutinib drug for a month supply like I’ve been getting is $10,000.00 per month.  SAY WHAAAAAATTT????!!!!!

Yeah, so, anyway…  She said the company would work with me and Medicaid and that it would all work out, so I’ll just go with the flow for now and see how it all works out.

Another 15 or 20 minutes went by and the doctor came in, asked if Colleen had gone over the “study is over” info with me, and I said she had.  He said that meant that I wouldn’t have to be going down to Detroit every month to meet with him anymore, though I’d probably have to do it once or twice more before it was all straight, and that was good news.  The fewer trips like this, the better, especially in blizzard conditions.

Then he gave me the regular exam; Checked for swollen lymph nodes, lungs, heart, gastro, organ irregularities in size, sores, etc.  We noted that the thumb damage and blemishes I’d had on my cheeks, back and chest were healed up, and we talked about whether they were caused by the Ibrutinib or some other factors.  We didn’t come to any determination about that, but decided since they healed up it’s all good.

Then Colleen came back in with another month’s supply of Ibrutinib, and I wondered if I could sell them on the black market, now that I know what they cost!  :)  After that, we headed out to the front desk to make an appointment for a month from now, and after a minor tussle over making sure we didn’t have another WAY early appointment like we did this time, we were on our way again.

My next stop was to be a PET Scan over in Children’s hospital next door, scheduled for 12:30 PM, but that whole medical complex is a huge maze, so I asked for an escort to guide me, which is a really nice thing they have going on there at the medical center.  Mom said she’d just wait downstairs in the main lobby of Karmanos, where they have comfy couches and she could just sit and read comfortably.

The escorts came and I followed them through halls and tunnels and a couple of elevator rides and eventually we ended up in the place where they do the PET Scans.  I thanked them, and they were off to assist someone else.  I didn’t sit long in the waiting room there before someone came to collect me, and we went to the patient prep room, where I changed out of my jeans and into pajama bottoms, answered some questions for the technician/nurse/medical assistant, or whatever he is, and then he injected me with the radioactive isotope used in the scanning.

Then I was on my own for about an hour while the radioactive isotope spreads throughout my body so it will be picked up by the scanner.  I played a little Sudoku on my tablet for 5 or 10 minutes, then turned out the light and took a nap for the remainder of my hour.  I woke when the tech came back in to lead me into the PET Scan chamber where the big doughnut shaped machine is.  Up on the table I went, he put the cushion under my knees to prop them up, I raised my arms up and behind my head and into another cushion made to hold them in place comfortably, and just went into rest mode while the table moved up and into the doughnut hole.

It took longer than usual, and I guessed that it’s because they were scanning a LOT of me this time.  Eventually, it was all over, and I changed back into my jeans, got some basic directions from there to the lobby areas downstairs, and was on my way again.  Mom was still sitting on a couch in the lobby, and then I paid the valet fee and they brought the car around, and we were on our way down the road.  She mentioned that she thought she got a little nap there on the couch, and I noted that I’d done the same up in the PET Scan staging area.

I stopped around the corner at a drug store to get a bottle of water, took my Ibrutinib pills for the day, and then we set off up I-75 towards that same Chinese restaurant we’d been to a couple times already, as I had a taste for sushi again (and a bunch of other stuff from the buffet).  A half hour drive later, we sat down and had a dinner there that couldn’t be beat, and mom even tried a teeny-tiny bit of sushi (not enough really to get the flavor, IMHO) and a frog leg for the first time ever.

After that, we hit the highway for the drive North to home again.  I think we got back about 9:PM, so it was a pretty long day.  I dropped off mom at her house and borrowed her car for 2 days to take my 4 year old granddaughter Gracie to school and back for a couple days because my daughter had morning shifts those two days and it was cold and windy enough out to freeze a witches toes off, so we didn’t want her and step-dad Mark to have to walk back and forth in it if they didn’t have to.

The next day, Tuesday, I called the folks at the Affordable Care Act (Obamacare) web site back, since they hadn’t gotten back to me the way they said they would yet.  I was supposed to get a call from a “Resolution Specialist” in 2-5 business days to resolve that snafu I had about wanting proof in the form of release papers that I was no longer incarcerated, when I haven’t BEEN incarcerated (so I don’t have release papers).

The woman I spoke to on the phone was very nice and pleasant and easy to talk with and work with and totally unhelpful, and after 20 minutes of getting essentially nowhere, I told her so, in as pleasant a way as I could, while my aggravation levels climbed.  My bottom line: I WANT ACTUAL resolution, as I was told two weeks ago that I’d get in 2-5 business days with a phone call from a “Resolution Specialist” that never came.

I am NOT interested in trying to delete the information I already put in and try again, when I’ll probably just get the same result.  I am NOT interested in going and buying a background check on myself and sending it in to see if that fixes the problem, when it might not.  I am NOT interested in the fact that I can still see what plans WILL BE available AFTER I resolve the problem I’m having.  ALL I’m interested in is SOMEBODY actually RESOLVING the problem with or for me.  The end.

Besides, it’s THE GOVERNMENT.  They HAVE all the information already about whether or not I’ve been incarcerated and/or released from prison, for crying out loud!  While I was filling out the information online, the web site asked me some very personal questions that I had to answer for it to confirm that I really was me.  I remember thinking at the time how slick that was, that it had that deep level of info on me to be able to confirm like that.  Then I thought, “well, of course they have that level of info – it’s the government and all their records – they know ALL ABOUT me.”

So, for this woman on the phone telling me I need to jump through some kind of hoops to prove to the government that I’m “no longer” incarcerated just really pissed me off, to be honest.  It made no logical sense to me.  They HAVE to already HAVE the information to confirm that, without my help.

With that, I told her that I need to go pick up my granddaughter from school, and I’d appreciate it if she’d escalate it again to one of those mysterious “Resolution Specialist” people, and put a note on it that this is the second time, they were supposed to call me back in 2-5 business days 2 weeks ago and never did, and I want someone to pick up the ball that someone dropped and get the job done this time.  She said she was typing it in as we speak, asked for my phone number and email address, and the call was over.

I’m hoping it will actually get resolved this time, and will update with whatever happens.

Meanwhile, enjoy this photo I shot of my grandkids, Gracie and Michael, with Santa Clause that I took after the Thanksgiving parade about a week and a half ago.  :)