Update: 1-30-10 & 1-31-10

Gene's update: 1/30/10-1/31/10

Waiting, waiting, watching, waiting: We are in day nineteen of this experience. It seems hard to believe and at the same time feels like it has been months. For both Gene and I there is a routine being established. Gene’s is quite regular, mine fairly so and the fact that both of us are experiencing some kind of new normal is due in large part to Patty and Jim being there for both of us in whatever ways are needed. And then some.

Hair is the first distraction. Gene’s nephew Mannie, who is a hairdresser by trade, came in on Friday afternoon and gave him a very short haircut….the transitional cut. It looks very contemporary, not that Gene wants to hear that. But it is falling out fast. When he told me on Friday I had to stop and sob for awhile, but now we have accommodated to that as well. Patty and Jim and I shopped for hats this weekend and found a few to his liking, but his favorites so far were the ones Jason and Nancy found. So he has options, but hasn’t actually donned them yet. Although yesterday when we took our walk he did say his head was cold. But, understandably, putting off the hat for as long as possible.

The other main concern continues to be whatever is going on in his lungs. He now has a marked cough, which he now describes as hurting, but before called “pressure”, and that has been a change over the week. But no fever for 4 days, so that is curious. When he does a backwards stretch, and opens up his chest, it relieves it….so it could be posture related. Jason suggested checking to be sure the HEPA filter in the room is working as expected. I’ve asked twice and they say it is all automated….Gene will ask his doc this morning. I worry that it is related to the picc line because when he coughs he reaches over his heart. But they are the experts…..they’ve done the heart monitor and it showed nothing, they have done three clot sonograms, listening several times an hour, and probably another CT Scan today. They’ve changed his meds….he is on anti-biotics, fungals and viruses, and has some nasty looking rashes. He has some good lotion for it, I think it looks worse than it feels, although it does itch. Yesterday they also gave him platelets as he has almost none and a leukemia-related rash called petachea is all over his legs, basically broken blood capillaries that cause dots, some quite large, on the limbs. The platelets, which are responsible for clotting, should help with that. And his back is bothering him now, he thinks because the bed is too soft. I suggested today that he ask for physical therapy.

We’ve been doing our own physical therapy in the hall walks. He is now unhooked from the IV for an hour at a time for several times during the day, so last night he put on his tennies for the first time, instead of walking in his slippers, and we actually walked on the treadmill for the first time since starting chemo. He does 15 minutes twice a day most days, and we walk pretty fast. I have a stopwatch timer on my phone so we time the laps, kind of a motivator….I get to pretend I’m the trainer.

Randy, SDSU colleague and friend, set up an Excel spreadsheet for his key blood markers, and the nurses printed out all the reports from 1/23, the next to last chemo day, to today, and will continue to do so daily. So we can enter the data and see the results on line graphs. So far, key markers are flat, but that is where they are supposed to be. So that is cool, and something Gene really wanted to do, track the data. Even the nurses are impressed, and say the graphs look better than theirs! Docs say it will probably be at least another week before we see any indication in the bloodwork if the chemo was successful. Two weeks out from the end date which was last Sunday. And then, it will probably be another week before they release him. I think Gene’s own calculation was one week short of that, so that was discouraging to him. And it is a difficult time, just waiting, dealing with the chemo-related symptoms and whatever is going on in his lungs/chest that they don’t know how to identify either, despite the best efforts. I do notice Gene’s spirits lagging a bit. Not that he is not hopeful and positive, but getting worn down. And being uncomfortable does not help. And because human nature is to show your least best, sometimes, to the ones you love the most, it seems that I’m not doing a lot of things right. But I’m trying to learn to navigate the new territory, and I am making mistakes. And mostly Gene lets me know!

Food is a challenge too. I’m going to make a pot of soup today. Patty made him a breakfast burrito, eggs and potatoes and green chile. He was excited to get it but then after a few bites said, “Tell Patty it probably tastes really good”, and said it confirmed that his taste buds are much impacted. The cups of chocolate Haagen-Daz are still a hit, so we’ll keep working to find what it takes.

Vicki, Teri and Lola have received their test kits and will complete them today. Emilia was tested when she was here. I’m not sure how long it takes them to process the results once they receive them back here. So that is another wait and pray chapter. I’m still quite anxious about the whole bone marrow transplant process, but recognize of course, that it is the best possibility for a cure. But from the little bit of reading I’ve found time or allowed myself to do, it will require tremendous strength, tremendous lifestyle changes (as if this is not already), and a long time in recovery…..almost a year till he is clear.

So, on the updates: Patty hopefully has set herself up to take over the blog-posting responsibilities from Jose Luis. Those of you that are so inclined can subscribe to the blog, instead of getting the email message. So just let me know if you want your name removed from the email list because you’ve subscribed, except I can see who has subscribed and I’ll just assume you want to be removed. And if you didn’t subscribe or ask me to take your name off, I’ll just keep sending it as an email for the time being. The blog URL is: http://genecentral.blogspot.com/. It was on my list to learn how to post, how to be an official blogger, this weekend, and even though I limited my list to 6 or 8 things, only 4 got done: eat, sleep, be with Gene, move Symphony to a new berth away from a neighbor we didn’t (I didn’t) appreciate being next to. Thanks again to Patty and Jim, who also wear fabulous crew hats AND cleaned out both yucky dock boxes. So, sending this long one as an e-mail and Patty will post. I notice Jose Luis has added, at Justice’s request, a “favorite photo of Gene” section….feel free to send yours along or post yourself (however that works - EMAIL FAVORITE GENE Pics to Jose Luis at alvarado@mail.sdsu.edu). Oh yea, we are good with pajamas….lots of you, mom, Sharlene and Micheal, Bobbie, have contributed so we should now only have to do wash, maybe only weekly.

I’m taking a day for me today, taking a day sick leave, just to breathe and stretch and get some of the list things and a doc appt for me. Breezy appreciates that. Jim and Patty keep trying to do everything right by her, but she is, after all, a cat…..not easily pleased. Thanks for all of your cards, emails, wishes, and prayers….they mean so much to us.
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