Monday September 7

Coming off a very nice Labor Day weekend. Emma, Jim and I spent the day in Gloucester yesterday with our great friends the D'Abates. Jim and glen took the boat and the girls drove to a waterfront restaurant where the boys docked and joined up for lunch. Kirsten, Emma and I toured glouster by car identifying several waterfront homes that met our criteria for a second residence.  We made our way to a lighthouse and long concrete pier/brake wall which we walked down passing artists and fishermen/women and other day trippers. Saturday had been extremely low we energy day for me. Days like that are inevitable but still so frustrating. I am weepy, cranky, tired- a real pleasure to be around.

I am in the clinic for a scheduled visit this morning.  My nurse today said low days are inevitable and they get worried if a patient does not bounce back in a day or so. Also my platelets were very low today and typically I do get tired when they are low.  In the clinic now getting the platelets.

I am on two chemo regimens (one infusion which was administered every day for seven days ending Tue 9/1) and a pill chemo I am taking daily.  My routine since my infusion chemo ended has been to come into the clinic every 3-4 days and get my labs drawn.  One side effect of the chemo is low blood counts so I frequently get replenishment of platelets and red blood.  

Still neutropenic meaning I have very low white blood cells including low neutrofils (disease fighting white blood cells). So I am wearing the mask / gloves in indoor crowded places and back to a restricted diet.

When the leukemia came back the plan was to do one to two cycles of the infusion chemo (taken intravenously at the clinic) while continuously talking the pills.  The infusion is 3 weeks apart so, if we do a second round it would start on or about 9/23.

The next step is the DLI (donor lymphocyte infusion) which is a booster of cells from my original donor to improve the efficacy of the original transplant again helping my own immune system fight any remaining leukemia. So the strategy is twofold targeted chemo to kill the leukemia cells (the type of chemo I am taking also acts as an immune accelerator) and an infusion of new donor cells (a mini transplant -my words not the docs) to boost my immune system and continue it's frontal assault on the leukemia

The determination of which will be the next step (round 2 of chemo or straight to DLI) will be determined within the next week or so. It is too early to say the chemo is working but there are no signs it is not (how's that for hedging my bets).  There are signs I am responding to the chemo which is very encouraging.

Anyway thanks for slogging through this. This is what happens when I have a high energy morning and I am in the clinic by myself.

Oh and before I go the Joseph update. He is enjoying Bowdoin and had a visit from his best pal Megan this weekend   Jim Emma and I hope to get there soon. Well all done at the clinic so off to home.