Timing: Treatment, Tests and Transplantion

 First some good news:  We just got off the phone with her (Sunday morning, 4/30).  She’s on an anti-nauseant medicine (Zofran) which is keeping the nausea level down, but she has a swollen tongue and has a gun/metal sandpaper mouth. “Icky” was the word she used.  Despite that, she’s feeling surprisingly good given what she’s going through.

Her blood pressure this morning (oh to hell with hipaa rules) was 100 / 61 and mapping at 74.  Last night it dipped fairly low, triggering some visits from nurses to retest,  but it rebounded this morning. 

Some of the effort with paperwork has paid off.  Hours filling out forms, phone calls, waiting on hold, being hung up on .  Imagine laying in a hospital, in the battle of and for your life, and being hung up on.  By people who are supposed to help.

In any case, some positive news about FMLA,  some on insurance, so effort, patience, determination and help from friends is starting to pay off.

Leigh was with Kristina for much of Friday, Shannon on Saturday, and Julia set up a new ‘google forms’ calendar to schedule visits.  Contact Julia at Jula.Cain@Gmail.com for access to the google docs calendar. 

In addition, Leslie showed up and gave Kristina a reiki healing session.  Kristina's oncologist walked in and admitted "wow, this is a first for me!".  

Treatment, test, Transplant.  1, 2, 3.  It sounds so easy.  Chemo, the treatment, bone marrow aspiration, the test, followed by a bone marrow transplant.

There's nothing ‘easy’ about any of this and the devil is not only in the details, it’s the timing and the coordination surrounding the sequence of events that is frustrating.  It’s almost inevitable that there’s frustration and uncertainty.  On the one side you have the Fred Hutch Cancer Center, that brought Fred Hutch and UW Medicine together.  An incredible array of professionals.  This is what they do.  They’ve seen thousands of cases and have a system, a process to coordinate treatments and transplants.  Different disciplines are aligned with each taking part in a patients treatment.

On the other side you have a single women, in her third battle of Leukemia who has pretty good knowledge of the medical side of things, but from her own viewpoint and history.  Dare I say strong willed and outspoken (I can hear Kristina snicker when she sees this).    The professionals rely on medical studies over a broad range of cases and medical understanding evolves over time with new studies.  Kristina knows her own body and her two past battles with this devastating disease.

The inevitable frustration is the different viewpoints and some degree of uncertainty, or at least uneven communication, with the ‘powers that be’.  One from a professional point of view involving hundreds of patients, the other intensely personal.

The chemo treatment is done.  The G-Clam is a 5 day protocol and now the blast cells should be all but gone.    The aspiration, the test, though, can’t happen too soon – the Chemo needs time to do its thing, and cells need to rebuild a bit -- but it can’t be too late either.  The blast cells may grow fast, but the hope is that the chemo will put into temporary remission so the transplant can go forward.

Then there’s the timing between the test and the transplant.  Transplants take time to arrange.  If the process is linear, wait for the test then schedule the transplant, precious time is consumed between the test, which is only a snapshot of the blast cell count at one point in time, and the transplant.  If too much time elapses, the success of the transplant is compromised as those fast growing blast cells have become too numerous.

Right now, Kristina is in the hospital for 2-3 more weeks.  She hit ‘nadir’ on the 27^th.  That’s the low point of the chemo treatment having no white blood cells.  Zero.  In an earlier post we referred to the immune system asking ‘friend or foe’.  When nadir is hit, there’s no one to even ask the question.  Kristina is now at extreme risk to any infection. 

Now she’s in cell recovery mode and the hope is that the healthy cells will recover, and the blast will be gone.  That's the best case.  If there are remaining blast cells, the number must be under 5%, for a 'go' on the transplant.   The test is currently scheduled for May 24^th and the temporary transplant coordinator (Kristina’s assigned coordinator, who she knows, is on vacation) told Kristina that once the test is done, then they’ll schedule the transplant.  Kristina is pushing for the coordination to begin sooner. If there are some blast cells, then the % will go up as time passes -- and the shorter time between the test and transplant the better.

That’s the current battle – timing.  And Kristina is battling.  Boldly.