Gene’s update: Thursday, April 22, 2010

Happy Earth Day!

Day -1 to Transplant. It has been an intense two weeks. I erred in assuming that this chemo would be like the others. It has been a series of episodes, mostly minor, but worrisome. And it has beaten Gene up more than the other rounds did, just like they told us it would. This morning, the doctor we are with this week had an analogy, not a great one, but this isn’t a great situation, he said, we’re not adding in any more really bad stuff, but you are “under the bus, and there is another axle coming”. But, he felt all the stuff going on, weight gain, diarrhea, low pulse, is all within the expected range. I guess that makes me feel better. The nurses, who really are managing all of this, certainly seem concerned.

I’d thought, foolishly, that I could work this week, but fortunately my boss convinced me last Friday that I should not be working and that I should get a medical leave for stress. So Monday I saw my doc and she gave me an eight-week leave. That means I can use my sick leave, and try to reduce my stress by focusing completely on Gene. Ok, a bit on me, maybe. My blood pressure was higher than it has ever been, still within normal, but it was a wake up call that stress does have an effect, even on me ;-). My other Patty friend, Patty King, also from ABQ, has been in town since Friday, and has been helping with errands, cooking, kitty care and companionship, so that has helped so much. Her husband, Dave Ellin, has done some around the house stuff, so I’m being taken care of well. And Patty Dana arrived back last night to hold my hand through what we hope will be the worst of it over the next two weeks.

Gene’s blood pressure has been quite normal as well, even though his pulse has been in the 40’s. He has been retaining a lot of the massive amounts of saline that they have been putting in to him to dilute the chemo…..he has gained 12 kg. of water weight in the week of chemo…… 1 kg = 2.2 lbs. Quite a bit. The steroids probably contribute too, three different kinds, not all at the same time. Yesterday was the last day of putting chemo in, but he’ll continue to get anti-rejection drugs. I definitely wasn’t prepared, even though we had the education session, read the materials, looked at the dvd’s….still wasn’t prepared for the toll this week would take. They’d told us about the chemo and anti-rejection drugs, but they’d not told us about all the other drugs that they’ve needed to use to mitigate the effects of the super drugs, and manage the symptoms. Last night, Wednesday, was his worst night yet. They said the worst time would be days 4-14 after transplant. So, I’m feeling kind of anxious.

I’ve been making his lunch and his dinner and he has been eating really well. So it has been a full time job to keep the meals going, but he told me Tuesday night that he thinks that is why he is still doing so well. Of course, that was before he was sick all last night and he and the nurse think it was his favorite soup, chile con eloté, that contributed. I think I have a freezer full of four soups, all of which may cause some problems. He’d had such a great appetite and no digestive problems that I thought the things that had not caused a problem to date, beans and just a bit of green chile, would not cause a problem. Wrong. Back to the drawing board/stove.

The room décor is coming along nicely. Sharlene took a bunch of photos of spring on the farm so we had those enlarged and those are covering the wall facing him. Michael and Eileen sent chile lights in their goodie box, so we’ve got those going on as well, and Ruth has sent the most giant sunflower balloon imaginable, and Cristina made a week’s worth of colorful New Mexico themed pillowcases, and of course, the prayer quilts. We are in the same room, but didn’t know for sure that we would be, so we took down all of your wonderful and loving cards that had covered the walls, and have a scrapbook of those in progress. So now we have room for more cards….just in case!

Right now they are telling us that they anticipate the transfusion with the new cells to happen noon or later tomorrow, Friday…..check the blog and the email tomorrow, nothing seems to happen really on a tight schedule on hospital time, but I’ll update on the time as we get closer. For those of you doing a prayer chain, or harmonic convergence, we can all be welcoming, and praying for the “engraftment” of the new cells and the beginning of the year-long process of building a new immune system. Laurie, the transplant coordinator, who also maintains the anonymity of the process, was able to tell us that the cells are due to arrive here this evening, after the lab closes. So they will get washed and processed first thing in the morning, which will take a few hours. She assured us that they are not hung up in the European airspace…..that could have been an issue I guess, if our donor was from Europe…..we’ll know more in a year! But today, a generous and courageous young woman is in the process, or has just completed the process, of donating her cells, after taking a drug for a week that made her feel not that great, so that some stranger somewhere, could continue to live. Hold her in the light as well.

For the next day or so, Gene really does not want visitors, it is just too taxing, and he is running to the bathroom every 15 minutes. I’ll update as that changes. And, I’ll send out an update tomorrow when I find out what time donor cells will be welcomed in.

Thank you for all your phone calls and other messages. We’ve both not been answering the phone. Gene for lack of energy and just wanting quiet and rest. Me, if I’m not at the hospital because I’m home getting food, or resting, I feel so anxious to get back in case something happens. So I don’t pick up the phone. And I know I’ve not updated in awhile, so I apologize for causing any worry. But we are receiving and grateful for all of your messages, care, concern and love, so keep them coming, and bear with us! We are, as far as I can tell, on an expected course. And they told us to expect a rough ride. We are on it. It is, as predicted, difficult and scary, but thanks to all of you, it is also filled with blessings and love.

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