Eleventh Trip to the NIH

It was one year ago this month that I began my visits to the National Institutes of Health in Bethesda, MD.  In many ways, it has been one of the best years of my life, if not the best.  Physically, emotionally, spiritually, I am growing stronger every day.  I’ve decided to go ahead and buy that piece of fitness equipment I’ve wanted for several years but put off buying because of the CLL, thinking that I might not be around long enough to get my money’s worth out of it.  Forget that, I’m still here, and I am going to use it for as long as I can, and then bequeath it to someone else when it becomes necessary. I had so much fun last week in Washington, D.C., with Shane, and also Joe, as guides that I want to be able to take in more sights in the future.   
 

"Graft" by Roxy Paine in the Sculpture garden

Shane and I took the underground Metro to the National Mall, where we visited several wonderful gardens, the museum of air and science, the natural history museum, and then had lunch at the native American museum.  We met up with my nephew, the amazing Joe Baird, at about 4 o’clock, and he transported us to several of the remarkably inspiring monuments.   We saw, and touched, and felt the majesty of the Lincoln, FDR, Martin Luther King, Vietnam, and Korean War memorials.   

Lincoln Memorial 

Vietnam Veterans Memorial - With Shane

With Joe

FDR Memorial

Braille! Very cool, FDR!

Korean War Veterans Memorial

An example of Bonnie's photographic skill

Never rushing, we took our time in each place.  I hope to return there soon to see and feel much more of this treasury of our shared history.  We even had fun just riding along with Joe on the way back to Bethesda!  He wasn’t sure just how to get there, but it didn’t matter.  He said he liked to go down the streets that made him happy!  No map needed, he’d rather ask a living, breathing person for directions than consult a map.  Suddenly, in our wanderings, he spied a pupusería.  A what?  A Pupusería (where Salvadoran pupusas are made and sold).  So we stopped on a dime, and Joe treated us to a meal of pupusas and Sangria, Mexican grape soda.  I was lucky enough to also be the recipient of an elota, a Mexican street food.  It is corn on the cob, served on a stick, and slathered with mayonnaise, a grated hard cheese, and chili powder, and/or lime juice.  Yum! yum! Yum!  We need to hang out with Joe more often.

The next day was a little less exciting.  The combination of flying on Monday, sightseeing on Tuesday, and fasting Wednesday morning for a CT scan, caused me to become a little dehydrated, which made my blood draw a beast.  It just did not want to flow.  At last they procured enough for the day’s clinic appointment, but the rest had to be collected the next day.  Thursday was the bone marrow biopsy which I usually dread.  But since Dr. F. assured me he’d be doing it, I didn’t worry a bit about it.  When he came in and apologized for having a ,meeting he had to go to at the precise time the biopsy was scheduled, I had to struggle to stay calm.  I met the newest member of the CLL team then though, Dr. Martyr, who did the biopsy instead. I really like her.  But she didn’t get along well with my hard, hard bones.  She got the four marrow samples quickly and easily, but had some difficulty with getting into the bone for a sample.  She came up with a sample of bone half the size that the lab called for.  She had numbed the site up very well with lidocaine, so I agreed to let her try for a better sample.  But just as she thought she had it, the needle slipped off the side of the bone.  Yikes, a new sensation, which I don’t want to repeat.  After that, I was somewhat unnerved and said no to another try.  So the assistant applied a pressure bandage, and instructed me to lie on my back for 15-20 minutes as usual.  No undue bleeding was observed, so I was given permission to leave.  However, the nurse left before Shane and I did.  When I rose to walk out of the room, I found that walking was almost impossible because of extreme pain in the left hip every time I took a step on that side.  Shane grabbed a wheelchair in the hall for me to use, and we went on our way, meeting up with the research nurse outside the procedure unit.  She called the docs and told me to meet them in the clinic upstairs.  Dr. Martyr came out every 30 to 45 minutes and walked with me for a bit to see if things were improving.  Maybe they did, it’s hard to tell.  If they did, it was nearly imperceptible to me.  She gave us her contact info and released us, saying that she thought the lidocaine was to blame and that it would wear off soon.  I’m not sure if that was itt, or if maybe the needle jammed into something on its slide down the bone.  Anyway, Shane wheeled me to the cafeteria where we had a nice lunch, and then caught the shuttle to the hotel.  We were tentatively planning to go back to the National Mall, but were keeping an eye on the weather.  Severe thunderstorms were forecast for late in the afternoon, with a possibility of tornadoes.  However, my pain put an end to those plans.  I could hardly get from the shuttle to our room as I  became dizzy, light-headed, and nauseous, and felt I was going to collapse.  It is a very good thing that no one else was in the elevator with us.  I could not keep my head up any longer, and doubled over at the waist, head down toward the floor.  It must have been what I needed, maybe allowing the blood to flow back into my head, so that when the door opened I could make it to our room.  I stayed in bed the rest of the day and night, and by Friday morning I was able to walk well enough to get where we needed to go on our way home.  Here it is, six days later, and the area is still more sore than it has ever been after a bone marrow biopsy.  But I’m pretty sure it will be OK, especially after receiving today’s BMB report.  It was a good one, and thankfully, there was enough bone for the pathologists to get reliable results!!  Here is my awesome report:

Hi Ms. Washburn,

Good news!  Your bone marrow biopsy results are ready (sooner than I expected).

First, your total cellularity on this marrow is 30-40% which is normal for your age

(I know the number is slightly different from the 40-50% range that Dr. Farooqui

mentioned but it is still considered normal for you).  As you recall from Dr. Farooqui's

email you started off at 95% prior to treatment, dropped to 80% at two months, dropped

to 65% at 6 months and now you are at 30-40% at 12 months.  This represents a very

good response to therapy.

Secondly, your CD79a marker which specifically looks at the amount of CLL present,

is now 40%.  You started out at 95%, at two months you were at 80%, at six months

you were at 35% and at 12 months you are 40%.  There is really no difference between

35% and 40%; so I would interpret this as your CLL being stable between the last

6-12 months, but markedly improved compared to prior to starting therapy.

I hope this is clear.

Please feel free to email me if you have additional questions,

Sabrina Martyr, MD

Hematology-Oncology Fellow

National Heart, Lung, Blood Institute

National Institutes of Health

Is that not awesome.  And do I not have reason to be joyful?  My blood results were all very good as well.  And Shane.  What a wonderful traveling companion he was/is!  He plied me with quotes from Goethe’s Faust that he was reading, patiently slowed his normally rapid walking pace to match mine, and was helpful and fun in a hundred different ways.  I also enjoyed meeting his friend, Ashley, while we were there.    Thanks to Shane, to Joe, to the NIH staff, to United Airlines, and the Marriott folks, and to Heavenly Father, it was a beautiful, fulfilling week.

I am blessed!