Saturday, April 19, 2014

Treatment - Round 5

Yes, this is really the 5th round of treatment. This was originally going to be a negative post about how every time we set a date to get back to Alaska, we are forced to change it, but I think we've had enough negative posts for a bit. We got some mixed news this past week but overall I'd call it "good" in the grand scheme of things because we finally have a plan to move forward.

Bad 1: Insurance denied three requests to get Proton Beam Therapy at Penn so that's not happening. While no more effective than regular radiation, it is supposed to do significantly less collateral damage to the non-cancerous tissues and organs, ie my heart and lungs. This is key because this time around they'll be irradiating my chest. They refused to cover it because it is not an approved treatment for Hodgkins lymphoma on my plan. No amount of evidence that is is being used many places to successfully treat Hodgkins would sway them. Not approved for that usage under my plan...end of story. A month of waiting for insurance, completely wasted.

Good 1: After briefly considering paying for the PBT out-of-pocket, the doctor said the cost would not be commensurate with the value received, so we've moved onto a more "traditional" radiation plan. They'll still be doing a study where they'll be applying the radiation while I hold my breath so that my lungs are not moving while treating. I guess they can design the radiation fields so precisely that as long as things don't move, they can really minimize the exposure to my lungs as much as possible.

Bad 2: 27 more days of radiation treatment, significantly more than the 18 days for the first round of radiation.

Good 2: They needed to do a PET scan before starting this next round of treatment to see if the cancer had spread to any new areas. Given the speed with which it came back after the transplant and the 2+ months it's had to grow since it was first detected, we were very apprehensive about the results of the scan. The results came in and it had only spread to the node immediately adjacent to the one it was detected in before in my chest so it has not run rampant in the past 2 months.

The Plan: 27 days of radiation at Penn starting (hopefully) this coming Tuesday. They'll do partial radiation to any site that has had disease in the past and has not been treated by radiation yet, followed by more extensive radiation to the sites in my chest where it is currently active. Then we leave? I'm not even going to set a date on that because then I'll just be proven a liar again.

Monday, April 14, 2014

Got Ink?

Got any tattoos? Who's your favorite artist? When I get a craving for some new ink, I just go to my radiation oncologist.  Check it out!

Please disregard the somewhat blumpy torso...it's been a tough year.

They use these little guys to position me within their radiation dealing machines. With the 6 new markers I got today, the total permanent tattoo count is now up to 11.  Maybe one of these days I'll get one of my own choosing.  Better yet, as a charity event, you bid on the right to tattoo a connector between any 2 markers. Movember/Manuary is looking pretty lame in comparison. You can't quite Connect 4® in a line yet, but that's a different game.