Learning Curve

Seven new transplant patients checked in today.

The BMT unit at our hospital has twelve beds.  When we moved in 14 days ago, the unit was full.  Over the course of the last 14 days, nine of those people left.  Two new people checked in a few days ago.  Right now, I think there are only one or two patients who have been there longer than Alex.

Seeing those seven new patients moving in brings into sharp relief how much we've learned in the past 14 days, and how much Alex has already gone through.

Like most significant events, these 14 days have gone by quickly and slowly, all at the same time.

We've developed a routine - when to shower, when to walk, when to eat.  Twenty-three laps around the unit equal one mile. Every day we've been there we've walked between a mile and two and a half miles. Some walks are only two or three laps. Alex is good at routine. Sometimes he grumbles, but once he gets going he sort of sprints down the hallway.

I think about how those new patients must be feeling today. I know how we felt. There was a lot of fear and apprehension. Alex's anxiety was at high levels the day we moved in. We unpacked and put Christmas stockings on the door.

Within a few days, we had developed a routine and Alex was settling in.

We've learned a new language in the last year, full of new vocabulary, new abbreviations, and new acronyms.

After six cycles of two treatments each of ABVD, Alex's Hodgkin's Lymphoma was not in remission so it was called Primary Refractory HL (Hodgkin's Lymphoma).  The next course of treatment was three treatments of ICE chemo in a 21 day cycle, followed by BEAM chemo and an "auto SCT."  (Autologous Stem Cell Transplant.)

Some transplants are with your own cells (auto) and some with donor cells (allogenic or allo),  In talking with someone with Hodgkin's, or another blood cancer, you talk in this code.  "Are you having an auto or an allo?"  "What chemo did you get?"

They measure calories and fluids in, and whatever comes out.  When you have cancer, all things hinge on how much you eat, drink, pee, and poop.  Nothing is sacred.  I never thought about where the cancer goes when you have chemo.  Turns out, you have to excrete it out.  Just like a newborn baby, everyone is concerned with those four basic bodily functions.

Alex is past the six days of chemo.  He is past his transplant day - his "re-birthday."

Now, he is doing the amazing work of building a brand new immune system.  He's very, very tired.  But he still gets up and walks every day.  His input is good as well as is output.

They count all of his calories.  He's been doing great.  He has days that he's consumed 3,000 - 3,500 calories.  He walks about two miles a day, but spends the rest of the day in bed.  And he's still lost about four pounds.  Imagine how hard his body is working if it's burning that many calories.

We had visitors on day +4.  It was his first day that his counts reached the low they call "Neutropenic."  His immune system has been destroyed by the chemo.  He should have been sleeping that whole day, but he was so excited to see the family that came to visit.  We sang and had a pizza party.

Today is day +7.  He's still Neutropenic.  The doctors are thrilled with his progress.  He has a great attitude.  All of his numbers are textbook, they tell us.  A few more days, and the numbers should start to come up.  In about a week, we'll get to go to our temporary apartment with Alex.  We'll spend another couple of weeks in that apartment, going in for regular blood tests until his counts reach a level we get released to go home.

Everyone's experience is different, and many patients have terrible side effects from the chemo and from being Neutropenic.  Alex isn't done yet, and will still have some rough days ahead.  So far, though, he's made things look pretty easy.

How I feel today is so very different than I felt the day we moved in.  I look at all the new patients and their families moving in, and I realize how far we've come.