Ninth Trip to the NIH

 

 Signs of Christmas at the NIH! It’s such a happy place.  But we were reminded that there’s also heartbreak there.  We heard code blue calls to the pediatric unit, and silently prayed for the child who was fighting for his life, and for his parents, too. 

For me, it was all good news and good fun.  On Thursday, I had the best and easiest bone marrow biopsy I have ever had.  I don’t know what Dr. F. does differently, but I like it.  Very little pain at all.  (Look at bottom of page for BMB results).  Next I drank about 33 ounces of nasty oral contrast for a CT scan of neck, chest, abdomen, and pelvis.  Lymph nodes still enlarged, but decreased since Augusts’ scan. Macey joined Colin and me for a nice lunch in the cafeteria together, then I relaxed at the hotel, alternately napping and reading an Agatha Christie novel, while they took the Metro to the National Mall for a tour of the Holocaust museum. 

In clinic on Friday, I chatted with new CLL friends Joan, Jean and Jane, as we waited to be called back for our appointments with the CLL team.  A few of my ever-improving lab results follow:

WBC: 10.56 (normal 4.0-10.04)

RBC: 4.67 (normal 3.93-5.22)

HGB: 12.4 (normal 11.2-15.7)

HCT: 39 (normal 34-45)

ANC: 3.28 (normal 2-6)

ALC: 7.0 (normal 1-4)

Platelets: 227K (normal 173K-369K)

LDH: 143 (normal 113-226)

Last spring it was up to 2400!  Hap hap happy about all my numbers!  We picked up a 3-month supply of Ibrutinib at the pharmacy downstairs and headed back to the hotel to collect Macey, grab a quick Subway lunch, and walk to the theater to see The Hobbit.  I read it when I was 19 years old, so I reread it the weekend before going to Bethesda to refresh my memory.  We all liked it a lot, although I did fall asleep a few times during it as is typical of me.  Macey and I noticed the temperature had dropped while we were inside the theater, so we hurried back to the hotel and put on an extra layer of clothing, then caught a taxi to the Washington DC temple for the Festival of Lights.  A choir of young black kids, ages 5-18, from Baltimore delighted an audience of several hundred with their soulful renditions of Christmas carols.  On returning to Bethesda, we had a wonderful Italian feast at Mama Lucia’s.  Their chicken pesto ravioli was fantastico!  

On Saturday, Colin and Macey made another trip to the National Mall to see the sights, and I finished Christie’s Death at the Vicarage.  Not trying to brag or anything, but Colin was a wonderful escort and companion.  A lady in the Marriot even noticed and told him he was a good son.  Macey said she had a blast, which is a good thing because the trip was a combo 21st birthday/Christmas gift for her.  Dan went back to work on the 10^th, just two days before we left, and I’m so glad that he did well in my absence.  Not as well as when I’m home of course, but well enough.  He singlehandedly got our fragrant Christmas tree up and decorated, and now we’re eagerly awaiting Shane’s short holiday visit.  Merry Christmas, all! 



Bone marrow biopsy results:

Remember we look at two major things on the bone marrow biopsy. The first is total cellularity which is the total components of your bone marrow (white blood cells, red blood cells, platelets, and all precursor cells). For your age it should be in the 40-50% range. Prior to treatment you were 95%, at two months you were80%, and now you are 65%. It's still high because it looks like your normal cells are starting to come back. The second marker we look at is called CD79a and this specifically labels the CLL cells. Prior to treatment you were 95%, at two months you were 80%, and now you are 35%. You have had a significant reduction in the CLL cells in your bone marrow. I did not expect that the CLL would be completely gone, but looks like a good amount has been reduced. We retested cytogenetics so we will also see what happens to the 17p.