Update 1-23-10

Gene’s update: 1-23-10
When the nurse went to change the dressing on his picc line ( a little uncomfortable), I asked how often they change it. When she said every week, I realized….between feeling like a month and feeling like a very long day, it has been a week since the diagnosis.

It was a week of extremely stormy weather here, as I mentioned, kind of an apt metaphor for the storms we’ve encountered in our lives. And then there are the ones associated with the earthquake in Haiti….although we both agree this is preferable to being a Haitian right now, it has been an earthquake in our lives. But the sun is out, and we are starting to find a routine, and a break in the weather is a time to gather strength for the next storm. And your emails and wonderful thoughts and prayers have been a critical part of helping us find that strength.

Gene has had a couple of great days, he looks himself, he feels strong. His only side effects are the swelling in his legs from all the saline used to wash the chemo out. He’s got it down to going to the bathroom every 80 minutes and is now adept at dragging his lines and that iv cart around with him. He has been doing 20 minute walks with Patty or I around the floor, so that is great. Docs yesterday said everything looked fine, everything looked normal. They did a cat scan of his lungs and sinuses yesterday, trying to make sure they are staying on top of infection, which for the next large chunk of time will be one of the greatest dangers. Haven’t heard the results of that yet. So we are trying to be so careful. Yesterday I freaked, he was on the phone and needed to write so he picked up the nearest pen, a bic type, and put it in his mouth to pull the cap off so he could continue writing….a harmless habit that could be so so dangerous. We’re learning. Did you know that it takes alcohol 30 minutes to kill germs? It is the friction that kills them, so all that hand sanitizer (buy stock) only works if you rub, rub, rub, a simple slather isn’t enough.

I just spoke with him this morning. He slept well ( so did I for the first time in a week!), but they are going to transfuse again this morning. His platelets are low and we noticed a kind of rash (forget the name starts with p) that is particular to leukemia caused by blood cells coming to the surface as there is no clotting. He has been eating well…none of the mouth sores they tell us to expect (and Gene always says “and maybe not….”) and they are working really hard to find food he feels okay about. Emilia made pinto beans and we followed the rules for food from home (arrive chilled only one reheating here), and we can bring in tortillas too, so that will be good soul food for him.

So as good as he looks, it is hard to believe things are as serious as they are. The social worker helped me realize that I should return to work Monday, as I only have 10 paid days, because he is in good hands, and I will be needed once he is released. We are kind of developing a routine, Emilia has been with him more in the day, and me the evenings….maybe this week it will be mornings and evenings. Yesterday evening we were able to get wireless so I shared all of your emails, we had some tears and tender time, it was good. Today is a fairly long schedule of visitors (6-7 that I know of) so I need to get over there and be gatekeeper/bouncer, as hard as that is. But I promised myself I’d take a walk during one of those times….I know I need to do that. Thanks for all your messages, cards, gifts. Team CRMSE from SDSU gave him a Kindle Reader last night, that overwhelmed him. So much love and good energy pouring in, thank you. Chemo ends tomorrow at 2:00.

gail.moriarty@me.com