Nashville or Bust

BOOM! goes the dynamite…

Yesterday was another long day. The late afternoon meeting with the stem cell transplant team at Jewish Hospital in Kenwood started late. The waiting room was uncomfortable. Even though we had visited this place one time before, nothing seemed familiar. At one point, both of us wanted to run.

But running isn’t an option.

Once we were able to have “the talk” things took on a new level of clarity and real. There’s always that innocent hope that you may just hear, “Hey — this weirdness of yours is working in your favor today, Mr. Killen. We can fix it with a shot in the butt and some pixie dust.”

However, when three people are sitting/standing across from you, quietly and with compassion, walking you through timelines and procedures with things I won’t attempt to spell and pausing every two minutes to gently ask if you have questions, you realize that the only way out is through. And by through, I mean a multi-month stint of needles, poison, catheters, PIC lines, hospital stays, hospital trays, side effects, hits to the body, scans, recalibration, and hopeful periods that some things melt and some things regenerate… all within the petri dish of the human body. And not just any human body but that of someone you love. Sensory overload. I really don’t know how these doctors and nurses have these conversations.

They continued to talk. We continued to listen. The stem cell doc and Dave’s oncologist are part of the same group so there is a lot of synergy with the plan. It was confirmed that ICE+R or simply RICE chemo is the way to get things started. However, instead of three to four rounds up front, the transplant team is hoping that it only needs to be two before they can then take Dave over into their care.

To stay on track, the lymphoma sites need to show response to the chemo. If they don’t respond to RICE then they won’t respond to BEAM, the basis of the stem cell transplant process. If Dave shows a 50% reduction after cycle two of RICE then he speeds up the road to Jewish hospital for stem cell harvesting (which is a multi-day process all on its own), the scorched earth chemo process that is BEAM (another multi-day process) then the actual transplant followed by a few weeks of quarantine in the hospital to allow his newly re-introduced stem cells to regenerate and rebuild his immunity system.

If Dave doesn’t have the minimum 50% reduction after cycle two, then his local oncology team will hit Roger again with another cycle of RICE and continue to monitor with PET scans, etc., waiting for the signal to bring in the big guns.

Of course, this is based on Dave’s marrow being free of cancer so he can be his own donor. (Biopsy next week, most likely.) If not, then there is a whole other process involved on the transplant side. We won’t go there right now.

I had hoped there would be an option that could knock the lymphoma back with just chemo, avoiding the transplant. Maybe the whole diagnostic web of virus in the background and simplistic thought of “they caught this early so it is little cancer” would negate such drama and Dave could just treat what was present with what was needed. But that is not the case. We learned that when you are a repeat, it doesn’t matter if there is a spec of lymphoma or a big tumor of it, the intensity of treatment is the same. There is no simplifying. To quote from yesterday, “you absolutely need this.”

Again, there is no pain. No symptoms. Nothing to indicate that Dave has any of this going on inside of him. It was a fluke movement that made him notice the lump.

Maybe that is why this feels so hard right now. I can’t see what they are saying is there. I can sense it but I can’t see it. I waffle between layers of acceptance and soft denial. And I know I need to get over that real fast but I digress and admit: there is comfort in denial.

After another bit of talking, they paused to ask if we had questions. Dave simply said, “when do we start?” There was no hesitation — “Monday if we can.”

Given the holiday today and the late hour of our consultation yesterday, we are thinking that Tuesday is a more reasonable start date. But who knows? The phone hasn’t rung yet.

“You absolutely need this” … but you still have nothing concrete…help me find a way.

~Jacqui

July 3, 2015 - Posted by daveandjacqui | Dave