Purple Everywhere

Purple Everywhere
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Friday, April 5, 2013

Next, Next Step

Back to Dr. Wendy's office to find out the results of the recent PET scan.

I wonder what we'll find out, but I have absolutely no inspiration or feelings as to the results. It would be great if the cancer was totally gone, but either way it means radiation.

These are all the possibilities for this fourth occurrence of Hodgkins Lymphoma and their probable courses of action that I can come up with:

* It's gone, so we'll do follow up salvage radiation like we did before on my left inguinal lymph nodes.
* It's in one place only (right inguinal lymph node), so we'll do targeted radiation to remove it completed.
* It's in more than one place, so we'll continue chemo (for up to four more doses) as long as it's responding (shrinking) to the Adcetris.

Dr. Wendy reads part of the PET report to me. There's still lymphoma in my right inguinal lymph node. Originally, it measured over 19 on the activity level of the PET, now it's barely over 2. But there's no activity anywhere else.

Okay, no real surprises there. So all of the other eight spots that originally showed cancerous activity are gone. And the one remaining place is so, so close to being gone that chemo won't reach it anymore. So she's recommending me to Dr. Jay Clark for radiation treatments.

I don't know how those treatments will differ (if at all) from the salvage chemo I received last time, but that was easy with no side effects. Hopefully, it will be more of the same this time.

Oh wait. What about the possibility of a second bone marrow transplant, I ask. When should I follow up with the BMT team at LDS Hospital?

With a slightly surprised look, Dr. Wendy responds that I should probably consult with them before doing any radiation treatments because she doesn't want the radiation treatments to conflict with anything the BMT team wants to do. So wait to hear from LDS Hospital before scheduling with Dr. Jay.

Whew! It's a good thing that patients advocate for themselves and keep their doctors on track.

I wait to hear from Rachel Beers at LDS Hospital. She feels like one of my best friends by now after being the point of contact throughout the entire autologous bone marrow transplant process. She got a very terse message from Dr. Wendy's office and calls me for clarification. I'm able to clarify that the lymphoma is very close to being gone but needs radiation and we don't want to proceed with that step if it will interfere with the possibility of an allogeneic (from a donor) bone marrow transplant.

After checking with Dr. Julie Asch (another friend by this point of my life), she assures me that I can proceed with radiation.

I call Dr. Jay's office, only to find out that Corinne left early and forwarded all calls to, what seems like, an older female friend. That person isn't in the office and doesn't have access to the appointment books so now I have to wait for Monday to call. Annoying because I'm supposed to be covering for my team at work while they attend a conference in San Diego. I don't know whether to go to work on Monday to cover for my team or try and work from home with the hope that Dr. Jay can fit me in his schedule on Monday.

Why do health professionals have to take off before 4:30 p.m. on Friday without any way to get answers to pressing medical questions?

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