Paris in the Springtime, part I

We are all about creating positive memories with and for our kids. 
While we´ve tried to be intentional with this all along, the urgency has increased since my close call with the long dirt nap in October, 2007.  Now, living with polycythemia vera and Behcet´s disease, I am reminded every day that each healthy moment is a gift that should not be wasted.

Robert cashes in frequent flyer miles and hotel points for our spring break trips.  This is a nice family perq for a job that requires about 50% travel.  We want to expose K & A to the big, beautiful world beyond their hometown.   So off to Paris and Madrid we go!

Alex wants to spend his Euros on croissants and Katrina wants to eat crepes every day (she would also like a pair of fancy stilettos, but we´ll have to see about that).

We arrived in Paris on Saturday, April 3rd and took a taxi to the Hilton Arc de Triomphe.  None of us slept much on the plane, so we took a nap before heading out to explore the town.  It was a rainy day, yet the streets were full of people. 

Here we are at the Arc de Triomphe.  We quickly decided that the Eiffel Tower would be our ¨where´s Waldo¨ of Paris.  We took pics every time we could see the Eiffel Tower in the background.

 

Our first night in Paris, in front of the Eiffel Tower.  Life is good!

First Report from the BMB

The initial report from the Bone Marrow Biopsy seems to confirm most of what we already know about my condition, with a few more details and hundred dollar words. The summary diagnosis includes:

• The bone marrow core is hypercellular with estimated cellularity approaching 90 with trilineage hyperplasia.
  
• Blood shows leukocytosis and erythrocytosis.
  
• No significant increase in myelofibrosis. (This is GREAT news. YEAYYY!!!)
  
• Iron stores absent. (helps explain the fatigue)
  
• Hypochromic microcytic anemia. (helps explain the fatigue)
  

The myeloid to erythroid ratio is 1:2. There does appear to be progressive maturation of the myeloid, erythroid, and megakaryocytic cell lines. The megakaryocytes are increased. There is hypolobation of the nucleus. Red cells and granulocytic cells also appear to be increased. However, there appears to be progressive maturation without a significant increase in blast forms.

The blood shows leukocytosis and erythrocytosis; however the MCV is low and the RDW is high. The red cell line shows anisocytosis and is hypochromic (low iron).

The microcytic anemia could be due to the alpha thalassemia and/or iron deficiency.

Bone Marrow Item: Units Reference Range

Blasts 4.2 (H) (0.1 – 1.7)

Bands 6.8 (L) (9.4 – 15.4)

Rubriblasts 3.0 (H) (0.1 – 1.1)

Prorubricytes 6.0 (H) (0.4 – 2.4)

Rubricytes 35.2 (H) (13.1 – 30.1)

Metarubricytes 4.2 (H) (0.3 – 3.7)

Total Erythroid 48.4 (H) (15.0 – 36.2)

Lymphocytes 8.3 (L) (8.6 – 23.8)

15.0 (L) (19.0 – 45.0)

M/E Ratio 0.8:1 (L) (1.1 – 3.5)

Other tests take longer to process, so we'll know more later.

I'm back on the Hydroxyurea (HU) now to keep the hematocrit level under control.

The fatigue continues, and my optimism is on the rise. I'm certainly interested in hearing from other MPNers who will share their thoughts on these test results.

Blessings and peace to you,

Marina

Bone Marrow Biopsy in the Twilight

Talking with other people about the bone marrow biopsy experience brought back memories of women comparing childbirth stories. Everyone has their personal story, and thoughts on how it "should" go. There seems to be a continuum of preferences, from "all natural" to "wake me when it's over."

Since I have a pretty high pain tolerance and don't like anesthesia, I was inclined to just have the local numbing where the needle would be inserted. I decided research this a bit. So I turned to the definitive resource, YouTube. Believe it or not, some people have had their BMBs videotaped! After seeing a couple of patients (with the local anesthetic) cry out in pain and yell at their doctors to "hurry it up!" I decided to go with the "twilight anesthesia."

I decided to find some levity in this upcoming procedure. So I asked my daughter to draw me some "rumper stickers" the night before the big poke. On my right cheek, she wrote "Private Property" and on the left she wrote "Bad 2 the Bone."

When the nurses got me situated on the CT platform, they both seemed surprised when they saw the rump notices. "Let's not tell the doctor -- he'll be surprised!" one of them said to the other. Apparently this does not happen all the time.

The next thing I knew, the twilight juice was flowing and while I think I remember being awake during the procedure, I truly do not know. I could feel some pressure, but it was not at all painful.

It was a long day... we arrived at 9 a.m. for the 11 a.m. procedure. Because of delays in the hospital, my BMB didn't take place until after 1 p.m. After the two hour "observation" period, I was allowed to go home around 4 p.m.

Once we got home, I zonked out for a few more hours.

Now, we must wait for the results -- they should start coming in next week.

The lovenox shots resume again (thanks to Robert and Katrina for shooting me in the belly) as I add the rat poison (warfarin/coumadin) back to my daily diet.

What's that saying? Better living through chemistry.

Yippee!