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Sep 17

Karmanos and My Sore Thumb

9-17-2013 – Well, another 28 days has gone by since my last visit to Karmanos, so it was time for another trip to Detroit yesterday to assess how things are going.

My appointment was at 9:AM, so mom and I left early on our road trip; about 3:45 AM, actually.  Traffic snarled us up as we got close to Detroit about 8:30, slowing on the freeway to somewhere between 8 MPH and totally stopped, with no end ahead in sight.  With about 12 miles to go, it quickly became apparent that we were going to be late no matter what, so I elected to get off the freeway and take the side roads, and that worked out pretty well for us.

Once we got into the place, we were only in the waiting room maybe 20 minutes before I was called.  Then I got weighed at 198 pounds, and then had 5 or 6 vials of blood drawn, and headed for exam room 26, as instructed by the phlebotomist.  A few minutes later someone came in and asked the preliminary questions about what meds I’m taking, which is still just the Acyclovir and the study drug Ibrutinib.  I was asked general questions about any problems I might be having like nausea, coughing, fatigue, diarrhea, constipation, rashes, anxiety or anything else, and I answered that I’m not having any problems at all.

Not long after that, a doctor came in and asked the same questions and did a physical exam.  We talked about some open sores I’ve got on my face, and I explained that a couple of them on my neck are (I think) spider bites (I woke up with them a few days ago), some are from being over-zealous with a not-new razor while sitting here dry-shaving (realized later I’d scraped my face a little too close and was bleeding here and there), and a few pimples, with a new one just starting up on my nose.

I let him know that my thumb is in some pain as well and seems to be a little infected.  I cracked my thumbnail while working with some plywood and instead of going in the house and getting some clippers and a file to deal with it, I just tore the nail off in both directions and it got into the meat.

He said it still might have something to do with a reaction to the study drug, but that it didn’t look to be serious, and certainly not enough to stop the study.  He said to stop picking at them (easier said than done) and to apply an antibacterial ointment to them.  He also mentioned that we might want to get another PET scan in the near future, and I said that was just fine with me.  In general, his assessment was that everything looked good, and to stand by for a visit from Dr. Ramchandren.

A few minutes later, he and Dr. Ramchandren returned, went over the situation together, and decided to also prescribe an antibiotic in pill form that I’ll take for 10 days to help the sores heal up.  We talked about my schedule with the Ibrutinib and I let them know that I’ve been very consistent about taking them every day at exactly 3:30 PM, after spending 2.5 hours fasting before and a half hour fasting afterwards.  A few minutes after that, I had the prescription in hand and was directed to head back to the waiting room, where Colleen, the Dr.’s coordinator, would meet up with me and get me a fresh supply of the study drug, Ibrutinib.

So, back out to the waiting room we went, and pretty soon Colleen came by and asked if I had any leftover Ibrutinib and/or the bottle, and I handed it over and she said she’d be right back, and to head up to the front desk to schedule some more appointments.  At the front desk, we set up the next two appointments for two o’clock in the afternoon, so that we wouldn’t have to get up in the middle of the night and run out the door at 3 in the morning to make it to Karmanos by 9:AM again.  My next appointment is on October 14th, which happens to be Columbus Day.

While I was making the next appointments at the front desk, Colleen came by and said she was still waiting for the Lab work to come back so that she could get the pills, and I told her I understand.  She said she hoped to have the pills for me so we could be on our way within about a half hour.  Well, the last couple of times we’ve been there doing this, we were there all day, not getting the pills in hand until REALLY late, so frankly, I had my doubts that she’d be able to make it happen that quickly.

It’s not her fault, or anyone else’s, for that matter.  It’s just that there are protocols to be followed, and they take time.  Nonetheless, it was getting close to noon, and I was getting hungry, and because of my fasting schedule, it was getting near time for me to eat.  So I let her know that I’d hang out for a little while longer, but if she wasn’t back with the pills soon, that I’d have to leave and come back.  She insisted that she thought she’d have them within about half an hour again, and I told her again that I’d heard it before, it wasn’t true the first few times I’d heard it, and it was sounding like an echo.

In any case, I let her know that if I do leave, I’d just be going downstairs to Wendy’s and would be right back.  I gave her my cell phone number and told her to call me if she came out to give them to me and I wasn’t there.  With that, I went back to the table where mom was still sitting, and sat down to watch another episode of Weeds on Netflix on my tablet.  It’s a half hour show, so I figured that’d be a good way to pass the half hour waiting for Colleen.

I always use my little ear bud headphones with my tablet in waiting rooms so as not to disturb the other people and to drown out what is usually a news channel droning on about the latest crisis situation that they talk about breathlessly while imparting no actual information, because they never seem to actually have any.  The same was true yesterday, as someone had shot to death a dozen people at the Washington Navy Yard and CNN was breathlessly carrying on about how they had no actual information.  Over and over and over and over and over.  And over.

When the latest episode I was watching ended, I told mom I was going to Wendy’s and asked if she wanted anything.  Just a diet pop was her answer, and off I went.  I came back with a burger, fries and sodas for mom and me, and right after I took my first or second bite and had my mouth stuffed full, Colleen showed up with the pills.  So, while it was a little longer than half an hour, she was still pretty close, and it was awesome to get them that soon.  I gave her a big thumbs up because my mouth was full, and off she went again.

As soon as I was finished eating, I packed up the tablet and pills and away we went, out of the Dresner Clinic, into the elevator, down to the first floor, and on through the lobby to the front door, where I paid the $2.50 for valet service to bring the car up.  A few minutes later and we were on our way up the road again, headed for home.

We drove for a few hours and mom got a little nap in the passenger seat, then we stopped for gas and dinner at the truck stop next door called the Hilltop Restaurant.  I had an open faced roast beef sandwich with mashed potatoes, gravy and coleslaw, and mom had a BLT.  While we were eating, FOX news was on a couple of TV’s up in the corners of the place, carrying on about how much they didn’t know, just like CNN was doing earlier in the waiting room.

Meanwhile, a GIANT elk head watched over the whole thing:

Hilltop Restaurant ElkWhen we came out of the restaurant, mom offered to take over the driving, which sounded fine to me.  I had no idea how tired I was, but a few minutes later, I was sound asleep in the passenger seat, and when I woke up, we were at our exit in Indian River.  Soon after, we were pulling up at my house.  Not long after that, I was in bed having a nap, after a long, but satisfying day to Detroit and back for my monthly checkup.