Thursday, August 25, 2011

Multiple Myeloma Blog

Multiple Myeloma Blog

My Medical Update: I Have Been Home For One Month

Posted: 24 Aug 2011 06:31 AM PDT

I have been home one month post-stem cell transplant, following a 16 day inpatient and 7 day outpatient stay at Moffitt Cancer Center.

So far, so good!  Let's start with the numbers.  At 4.0, my white count is in the normal range.  Specifically, my lymphocytes (the most important type of white blood cell for fighting infection and tumor growth) are also OK at 2.0.

My red blood count and hemoglobin levels are still a bit low at 3.71 and 11.8, respectively.

My platelet count continues to rise, up from 118 to 144 in the last two weeks.  An adult's normal range for platelets is between 150-400 K/uL, so I'm getting close.

I was a bit disappointed to see that all of these numbers (except platelets) are a bit lower than two weeks ago.  But no one seems too concerned.

I don't share specifics about this stuff with you very often here.  Honestly, I think it is all a bit dry--OK--I think it's boring.  Some patients record, graph and follow their counts, either on paper or using new patient friendly computer software that you can find online.

As an experienced patient, I have a good feel for which of these numbers are most important.  I don't chart them.  But I do ask questions and follow trends.

Hey, I'm just not a numbers guy.  After all, I was a social studies teacher in a former life.  And back in school, algebra literally gave me a headache! 

Monoclonal protein numbers, plasma cell percentages identified during a bone marrow biopsy or my M-spike numbers are a different story.  These numbers help me and my doctors monitor how my myeloma is progressing.  In other words, is my myeloma active, just hanging around or has it disappeared completely? I follow these numbers very closely and share those with you as they become available.

I won't have any of these numbers until the first week in October, when I meet with Dr. Alsina for the first time since I left Moffitt, three months post-transplant.

Speaking of graphs and charts, if you were to chart how well I feel since I have returned home, it would look something like this:
Overall, I am feeling much better.  And I would like to say that I feel better everyday.  But as any of my fellow stem cell transplant brothers and sisters will tell you, that isn't how it works.

At first, I might feel better for a few hours, then backslide a bit--or even "crash" and feel so bad or tired I would just head back to bed.

I improved quite dramatically over the next few weeks, with the "feel better" hours eventually stretching to a morning or afternoon, and then finally for an entire day.  But even now, my progress can't be measured in a straight upward line.  Some days are still better than others.

Like the colorful graph above, the trend is definitely up.  My good hours/days are becoming more common.  The bad hours/days are now few and far between.

But if I don't get enough sleep or push too hard in the heat, I definitely pay for it!

I have some new, multiple myeloma related news to share with you tomorrow.

Until then, feel good and keep smiling!  Pat

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