Wednesday, February 08, 2012

Mary, Are You Okay?

Hey, You Guys! 
Thanks for checking in on me.  I am feeling much better.  So sorry we had to cancel... with such short notice, last weekend.  Thank you for being so understanding & kind. 

I'd been doing pretty well & hadn't had a fever/infection in January (despite my number of infection-fighting cells being critically low).  I had a fever/infection in Sept/Oct that landed me in the hospital, one in November & another in December.  We were able to treat the Nov/Dec ones w/out-patient, prescription antibiotics.  Same thing is working with this one, but my fever really spiked Friday night & was scary high on Saturday.  I was crying about it & we had to wonder if we were supposed to go to the hospital or not.  No fun.

Good news is that the doctor I saw, in early December, at the University of Washington Medical Center, in Seattle, thinks he knows what's up.  The director of hematology at UCSF (who I've only seen twice) is now in agreement.  I have an appointment back at UCSF, on Monday, with the big shot doctor, who it seems will be my new treating physician. 

We will discuss a new treatment we are all sort of in agreement about.  This one shouldn't require hospitalization or surgery (hooray) & might just involve what they've tried to call a "gentle/not bad medication" that I might only have to take once a week.  I may be able to stop giving myself shots in the stomach, of another medication, on a daily basis.  I've been having to do that lately just to keep my number of infection-fighting cells above zero. (They bottomed out w/o it, last October).  A healthy person is supposed to have a Neutrophil count of 1500.  (I have been hovering between 200-500 lately.)

I'm going to try working with some 3rd-5th graders on Friday, but I just cancelled four days of work I had lined up for next week, to focus on Monday's appointment & starting the new treatment.  I figured I should take it easy as it lists fun things like, "bloody vomit" & "seizures" as potential side effects

Wish me luck as we see how it goes.

With Warm Regards,

P.S. I guess Dr. Damon's actual title is: Clinical Professor, Department of Medicine, UCSF; Director, Hematologic Malignancies and Bone Marrow Transplant, UCSF.  (Here's a link to his profile.)

Monday, January 09, 2012

Indolent - My New Favorite Word

I just wrote a message to a friend of my friend, Michael.  In it, I included a quick health recap.  Thought I'd share it with you too, in case you were wondering where things stand.

Hello! I'm sorry to have disappeared for awhile. I knew you were going to be away until around 10/10. I wasn't feeling well then & in mid-October, I ended up in the hospital for an infection & had to have my third bone marrow biopsy.

They were saying they thought the problem w/my immune system was getting worse, moving from Neutropenia to Aplastic Anemia. In November, a specialist at Stanford said I would probably need a bone marrow biopsy. I FREAKED OUT.

We had family here for 10 days around Thanksgiving. During their visit, on 12/1, I flew to Seattle to see a hematologist who has spent 40 years studying what he called my "special hematological condition." He said even really well-trained hematologists don't understand it because it is so rare. He said he didn't think I was getting Aplastic Anemia & didn't think I would need a bone marrow transplant. We were hopeful.

Then, he sort of disappeared for awhile. We're still waiting for him to contact my local hematologist w/conclusions/recommendations. I did hear from him, about a week ago. He said he'd reviewed everything & asked which doctor he should contact.  (He also asked if he could have another doctor look at my bone marrow biopsy slides but didn't say why.  Of course, I gave consent.)

So, hopefully, things are alright. In early December, the Seattle specialist said Neutropenia still appeared to be the dominant problem.  He said he thought I may have something called LGL Syndrome (Large Granular Lymphocyte Syndrome). 

When I shared this with my local hematologist, he said, "Oh, yeah."  "They think you do have LGL."  I was surprised, as this wasn't something I remembered hearing before.  We looked back at the report from my first bone marrow biopsy, from September of 2009.  It said, these findings point to the differential diagnosis of LGL; however, these things, including the absence of large granular lymphocytes argues against this diagnosis.

My primary care physician has a called LGL a "chronic indolent blood disorder."  While I'd rather not have a chronic blood disorder at all, indolent is my new favorite word. 

The word indolent has two meanings, both related.
  1. In one sense, indolent means lazy, lethargic or idle.
  2. When applied to a medical situation, indolent can mean a problem that causes no pain, or is slow growing and not immediately problematic.
Still waiting for a definitive answer.  Still taking it one day at a time.  Feeling really good, very healthy today.