Gene's Update 3-21-10

Gene’s update: The first day of spring

Moment to moment, one day at a time. I began feeling better Wednesday but so unsure about my contagion factor that I just decided to show up at the hospital and wait to see his doctor. Dr. Mason was great, and gave me about 45 minutes of his time, to ask all the questions I’d prepared and then some, as well as look down my throat and say that, with a mask, I could see Gene. It had been five days since I’d seen him. It felt like there was a definite decline on several fronts, physical, emotional, spiritual. Doctors and nurses saw it and commented as well. Dr. Mason told me that he recognized that we needed to get Gene home whether his numbers were there or not. The decision was made to have a bone marrow biopsy on Thursday to see why his neutrophil number was still stalled at 0.1, and to see if, perhaps, there were still leukemic cells and that was the reason for the stall.

I was able to hold Gene’s hand through the biopsy. They gave him a good cocktail of Adavan and Morphine and he had a talented third year fellow who made it almost painless (well, the cocktail helped for sure), and then at the end, showed us the tool, the marrow, the other liquid they extracted. Gene thought it was pretty cool, and I was amazed at my ability to not pass out.

After the biopsy, we relaxed together. I’m rarely there midday so it was different. One number that has continued to go up for Gene is his platelet count….so I was able to give him a light massage, something I couldn’t do when his platelets were low for fear of bruising. He told me he felt better just because some action was taken.

On Friday he was really tired, like I’d not seen before. He told me that he thought that he still had cancer, or that his cancer had come back. He certainly looks like someone with cancer, and his weight is down to 125. When he told me all the reasons, temp. spikes in the evening, return of night sweats, fatigue and malaise….I didn’t want to believe it, but what I’d seen over the past few days seemed to confirm it and his reasons made sense. The next morning, the results of the biopsy confirmed that indeed, Gene still has leukemic cells. So two rounds of chemo were not able to put him into remission. The small good news was that his marrow is “stable”. Dr. Mason had told me on Wednesday that we were in new territory and that it was moving a bit more towards the art of medicine, and less of the science, as there are no standards of treatment, no algorithm, for what to do now. They’ve told us all along that it is a difficult cancer, and he reiterated that his “complex cytogenics trumped all”, that would be the same thing they called chromosomal abnormalities at the beginning of all this, and what makes it so difficult to treat.

So, of course, the news was devastating. It seems like every time we’ve come to a fork in the road, it hasn’t gone our way. This coming Wednesday, at their team meeting, the doctors will “pow-wow” as to what should be the next course of action, and he said we would be involved in that decision. The two main choices seem to be giving him another round of chemo with a different, and possibly stronger drug, as his leukemia seems to be resistant to the ones they used, even though those are the standard of treatment. Or, they could give him a regime that would include chemo five days a month, every month, that probably would not eliminate the leukemia but would “hold the line”, to keep him as healthy as possible while we wait for a donor and transplant. Dr. Mason reminded me again that a transplant is the only thing that could save his life. So, as much of a gut punch as this is, we are so grateful for the work that Nadine and Susan and Lori have done, the plans for the donor drive on the SDSU campus this Tuesday, focusing on minority students, as it provides some hope at this otherwise dark moment. Also, over in Grant County, New Mexico, where Gene’s genes are most likely to be found (I think, at least), Sharlene and Joe and Patty and Jerry are working on a story for the local paper, including the on-line part of the drive, and using some of the information and steps that Susan and Nadine laid out for having a donor drive, are trying to organize one in Grant County. More hope. Thank you all so, so much for the energy put into this, for Gene, and for all the others who may benefit from increased participation in the donor bank.

In the midst of all this bad news, Gene’s niece Cindy and husband Jesse (who is older than me so when he calls me “Tia”, I love it, but have to think twice!), came to town to see Gene, and spent the night with me, so I had family support going through this rough weekend. At Jesse’s request I found a few things for him to help with around the house…kind of hard to do as Jim and Patty had left me in such great shape. Cindy worked on the nasturtiam jungle that was once my rose garden and freed my favorite rose from the shadows. So, their presence, company and friendship was yet another gift. They were having so much fun telling life stories at the hospital that they didn’t leave for the drive back to Phoenix until almost 8, and made it home safely.

So as much despair as I was feeling yesterday, today feels completely different. We were told today that he is going home tomorrow, Monday, for “about a week”, and then will return for the five-day chemo, and then return home again (assuming we can avoid the danger of infection while he is an outpatient, or any other complications that might require him to be re-hospitalized). We will need to go into the hospital everyday for a blood draw and analysis, anywhere from 1 to 3 to 6 hours at the hospital, but then back home. So tonight I am happy and excited that Gene is coming home. He’ll get to sleep for many undisturbed hours. Except for reporting to the hospital, we plan to just cocoon for a few days, sleep, watch movies (Wendy’s movies!), eat food that, while meeting neutropenic guidelines, doesn’t have to be chilled, frozen, microwaved…..we can have real meals.

Kim and Susan came over this afternoon and we had a cleaning session…..sorry you missed it Linda, you were at work and it wasn’t much of a party, just a “get it done.” (There will be more opportunities!) I’m so grateful for their help, the house is “disinfected” and “de-Breezy-ed” (as much as possible with her still here!), Susan vacuumed everything and Kim prettied up the yard…it looks great. They definitely rose to the friendship bar that Patty and Jim set, not that they hadn’t already;-) .

This evening we began “un-doing” Gene’s room. All of the employees comment on how homey it is. One assistant suggested we start a show, “Pimp My Room”. OK idea except very few people get to spend 67 days in the hospital. We have our request in for another ocean view room when we return and given what a favorite patient Gene is, we have a good feeling about that detail working out! We are taking all the cards and visit hearts and creating a scrapbook (at Marie’s suggestion!)….the cards have been so uplifting, so filled with love and care and concern and chuckles that it will be inspiring to look back on them. They’ve told us we should be out by noon tomorrow. I’m actually a bit anxious that something might happen to keep his return home from taking place. And although it is not the return in remission that we’d hoped for and imagined, he is still going to be home. And my hope, and I know it is that of the doctors as well, is that this next week will give Gene the rest and renewal he needs to continue the fight for his life. And so we will take what we can get, moment by moment, and hope for the healing power of home.

And Gene says, it might be time for the Curandera, in case anyone knows one…..