People we met:
-Phil (Day-night Manager) -AWESOME guy!
-Carol (& Greg -we met Monday -did part of a puzzle with him) -teacher from Washington State. here since December
-Bessy -triple play (Fibromyalgia, Radiation for breast cancer, Menopause) -rode with her Monday to Dana Farber & hung out a little here & there. WHAT a fun lady!
-The Seafood Cafè on Centre Street off South Huntington Stree in Jamaica Plains, MA is AWESOME! (We go here again Tuesday night)!
4/4 Monday -long day, but AWESOME bigger picture!
People we met:
-Suzanne (& Peter -across the hall), Rochester, NY -bone marrow transplant & kidney -same time. 3 weeks left here at Hope Lodge, started 1-2011
-Patty -front desk, very helpful
-Sobreida -registered us @ Dana Farber -Health Proxy form -WAY cool lady
-Julia -clinical research study coordinator -signed release for Dr. Soiffer's study & to put sample in bank for future research (learned later that the JAK1/2 mutation correlation to MyeloFibrosis came from using banked cells to study)
-Bar coded Gail's Dana Farber card
-Jean -phlebotomist -"good stick" -no more left elbow inside joint for drawing bloods -use left forearm instead.
-Ate, called & spoke to DH -Yaffa went to mani-pedi with Nana Linda, Cloe & Erin (she ended up getting red, black & gold nails for WXVG VIPER & blue & green toes for Mommy & Daddy)
-Dr. Andrew Aguirre =Fellow & colleague of Dr. Steensma -took a great blood & medical history, examined for lymph lumps, ankles, listened to heart, breathing, a few checks for spleen enlargements & we did a little Q & A session, then he went to consult with Dr. Steensma
-Coach Rachel texted us around this time to see how Gail was doing. How cool!
-Dr. Steensma and Dr. Aguirre discussion about Gail not having PMF, but ET with reticular -scarring/fibrosis, which 15 -20 % of ET patients have, but it often presents as PMF. Diagnosis was made due to Gail NOT having an englarged spleen, no rapid weight loss, no chronic night sweats/fever above 100 F, no anemia...
-Hung out with Ricara for awhile, just chit-chatting. So cool. Gail had an Atavan, then we went back to the bone marrow biopsy...
-Gail did AWESOME during her procedure. It was painful, but she toughed it out...preliminary results tomorrow.
Prognosis for ET + fibrosis (reticular scarring):
-@10 years, 5% of patients morph to Leukemia
-@ 20 years, 10 -15% of patients
-possibility of morphing to MF is +1 -2% per year
-HYD, probably not daily -as Dr. Simpson said, probably 1 every2 or 3 days to control platelets rising too high above normal, but a little high would be better than too low
-bloods once/month to monitor
-Dr. Steensma & Dr. Aguirre gave me a recent article (I think I read this already online in February -was so funny) titled, "How I Treat Essential Thrombocythemia" by Tony Green in Cambridge. I'll read it again anyhow in the hard copy they gave me.
-Back to chiropractic adjustments if Gail wants, as long as platelet counts are steady & not too low.
-Discussed "The Sword of Damocles Sydrome"
-Cab back to Hope Lodge -was too late for shuttle -runs had ended already
-Went up to room to chit-chat, text message many family, call a couple of people, too. Then just sat a few minutes to soak in the change from a 5-year average life span to full lifespan possibilities ::knock wood::
-Talking with Bubbe Levine while Gail fell asleep for a catnap was even more inspiring than usual. Tx Bubbe.
-Got an "all call" for soup dins with bread & brownies for dessert, then did a little puzzling with Greg.
-Soup was good. Cinnamon bread, too! Gail LOVED the brownies!
-Got Gail settled to rest -probably sleep for the night -& got online for a few minutes to type this, do some music coursework, FB a little and correspond a bit with Dr. Steensma about a few other questions. Also ordered Gail a new plate for her medic alert bracelet (which was engraved today & should be shipped tomorrow).
4/5 Tuesday -a more relaxing day...
We went out for a big breakfast down the street, then headed on the Green Line "E" to The Prudential Center Mall. We got a replacement for Ga'Hoole #2. We bought Cayleigh a cool shirt with a Lobster in a pot saying, "Man, is it hot in here?" that has 2 other lobsters out of the pot telling the in-pot 1 to mellow. We also got her a red, black & gold lobster magnet. The claws, antennae & legs move, too. Grooveh! We walked around the Mall a bit, then scooted out to rest a bit before heading out for sushi!
4/6 -Up at 2:30 -couldn't sleep anymore with the travel date, the great news, etc. Flight was good, though Gail wasn't overly comfi. Went to eat some salad at pizza place. Picked up Yaffa at Uncle Dude's. She had a BLAST -zoo, aquarium,... When Uncle Dude signs up for something -he doesn't play around! :D
Got home, we all napped, I did what I think was the rest of my music coursework for the week -will recheck tomorrow, then ate.
Dr. Steensma, of course, wrote me back quickly -he IS that AWESOME -about Gail's future, chiropractics, etc.
Gail & I caught up on a little TV & she's asleep right now.
Thank you to everyone who prayed, offered support, supported, etc. The future is unclear and the road has more bumps than if we weren't in this realm of Myeloproliferative disorders, but it is a better day than it was just 2 days ago!
I'll keep you all posted on the full report on Gail's bone marrow biopsy when we get them in 2 -3 weeks. Also checking on MPL gene mutation -which is a newer link to some of these diseases that is being researched and explored.
spouse of Gail from Queens, NY, but migrated to Metro Atlanta, GA
"There's nothing better than being the daddy of a daddy's girl"
"Rise from the ashes a blaze of Everyday Glory" -RUSH