HIT THE BRAKES! |8-26-16|

This ride we are on is giving me a headache. Is there something similar to Dramamine that I can take to ease the side effects from being emotionally and mentally tossed around? If so, I'd like a double dose, please.

I'm going to flashback to January when we were at the Mayo Clinic for a minute:

Mike had a million blood tests and one in particular showed he was positive for tuberculosis. This didn't necessarily mean that he had an active TB infection, but that he could potentially have the infection laying dormant in his body. For a little while, the doctors were really nervous about what it would mean for him to have a TB infection and get chemotherapy. The did several more tests for TB, all of which showed up as negative. They eventually (and hesitantly) came to the conclusion that the one positive test must have been a false positive. We were relieved because they weren't sure how the TB medications would interact with the chemo. We were also a little nervous though, because when he became immunosuppressed from the chemo, IF he had a dormant infection, it could become active and then be much harder to treat. We were in a little pickle because they ultimately left that decision up to us. We chose to trust that it was a false positive, and we were taking our chances that IF there was an infection, it wouldn't become active during his treatment.

Fast forward to today:

We met with Dr. Ganguly and our transplant coordinator, Jodi, to go over all of the grisly details of the transplant, and to sign the multitude of consent papers. I don't think we had to sign that many papers when we bought our house. They went over the not so awesome statistics for a successful transplant (with just the right amount of graft vs. host disease). And by not so awesome, we're talking a 25% chance. Yikes. But, like Dr. Ganguly said, without the transplant, he has a 100% chance that this disease will end his life. So, 25% has never looked so good, eh?

The next part of this appointment involved Dr. Ganguly revealing the fact that he came across a report that the pathologists from KU Med had made regarding the initial biopsy Mike had back in November 2015. We were shocked (as was the doctor) that the pathologist found evidence of a tuberculosis organism in the sample. Mike's jaw about hit the ground. "I thought this TB crap was all behind me!" "Are you freaking kidding me?!" "Why is this TB coming back to haunt me?!" (Just some snippets of how the conversation was going from Mike's perspective.)

So Dr. Ganguly tells us that he is deeply concerned about the potential for this infection to be lurking around in his body, and he sets us up with an Infectious Disease doctor, Dr. Hinthorn. (We thought we were done with these ID guys a long time ago!

We met with him immediately, and he went over all of Mike's reports, labs, and records, and confirmed that he suspects he has a dormant TB infection, and that Mike was lucky it never turned into active TB when his immune system was so low. He was going to consult with Dr. Ganguly about all of this and see if there was a way that Mike could get the TB meds at the same time as the transplant.

Forward Marching through our day:

Mike then goes into Interventional Radiology to get his new Trifusion catheter placed and have his PICC line taken out. Fun stuff. He went into Pre-Op at 12, and we finally got out of there at 3:45. We are exhausted by this point.

We get in the car, pull into Burger King, because the poor guy hasn't had anything to eat since last night, and he's starving. As we're driving home, we get a call from Dr. Ganguly. I pull the car over so we can concentrate, and talk. He has us on speaker phone with his colleagues. They discussed Mike's predicament and unanimously agreed that he CANNOT have the transplant while he has an uncontrolled infection in his body. (Cue the "WHAT IN THE *****) and the (ARE YOU KIDDING ME?) Ok, we just thought those things, we'd never actually say that to our doctors, but anyways, we were stunned into silence with an occasional, "Ok." "mm--hhmmm". "Alright." "I see."

They concluded that there was no way they can irradiate his body, give him the chemo of all chemos, and completely wipe out his immune system with the almost certainty that the TB would then become active and his body would have no way to fight it. It was a recipe for disaster. Serious disaster. It was a risk they weren't willing to take, and neither are we.

So now they are going to get him started on meds for the TB. They want to give it 4-6 weeks to work, and in the meantime they are going to do something else to keep working on the cancer that is still taking up residence in his chest.

Dr. Ganguly said he doesn't know exactly what their plan is yet, but he will know by next Wednesday when we go back to see him. They might continue with chemo, or they might try an immunotherapy called Brentuximab (please let insurance approve this, because it's super expensive). Either way, we know that we are on the right path for the best chances for a successful transplant when that time comes.

Bottom Line: We're going to get where we need to be, just not a fast as we hoped. Soon. Just not yet. To quote Stormie O'Martian, "I need just enough light for the step I'm on."

We're putting the brakes on the transplant, but we have to take care of business so when we are finally ready to do this, Mike is as healthy as he can be. Also, he's looking forward to getting in that combine soon! :) He'd give up Planting season in the spring for Harvest season any day.

XO

Robin

ps. The Fish Fry that our friends have worked SO HARD on is this Saturday. I'm not asking you to go so that you'll donate money,  I just want you to go so that Andy isn't cranky that no one showed up! Haha. Also, enjoy the desserts, but leave me a piece of chocolate cake!