Gene’s update: 2-28-10

Wow….the whole month of February….today is day 46. And there are still no numbers. Now the docs are saying two to three weeks after the end of chemo they will expect to see some neutraphils, the key number that will allow Gene to go home. So we are 2 days into week three after the last chemo. Closing in on seven weeks in the hospital. The nurses tell us that it is better that he is not coming back too quickly, that is what happened last time, which is why they knew he probably still had some leukemic cells. They say that because his marrow had a double whammy….he did not have time to recover between rounds of chemo so it is taking longer to come back. All, they say, to be expected. So we are still in watch and wait mode. Gene is hanging in there really well. Still good attitude, still good energy, still race walking the halls daily. We both just can’t wait for him to be able to go home, so we can both, but especially he, sleep. Gene hasn’t had more than a 4-5 hour stretch of sleep in 46 days. We both agree, he just needs to sleep for a couple of days.

And then we’ll take a deep breath and think about the next phase. We found out this week that none of Gene’s sisters were a tissue match for his transplant. I took the news very hard, but Gene maintained is good attitude, and that, once again, helped me through. The complication risks are higher when it is a non-sib donor, and there is the wait for a donor. Gene is entered in the registry, and we’ve been told they are already doing a check with two possible matches. But even that can take 2-3 months. We’ve heard from 3-6 months to find a match. And in that time, anything can happen. Remission, if in fact we got there this time, which we still don’t know, is fragile with this kind of leukemia, so he could slip out. He will need more chemo, and each round has to take its toll. And there are the dangers of developing an infection. Although he will have enough white blood cells to come home, he is far from having a restored immune system, even for up to a year after the transplant. So, the reality of how long a road this will be is just sinking in. Having a sibling donor would have put us on the freeway. Now we still have the mountain to cross, but is will be a winding back road, with lots of twists and turns. Another lesson in acceptance.

We did have a little adventure this week. Doc must have felt pretty sorry for Gene because he told us that we could go outside for a walk.. The only other time Gene even stepped outside was the night they told us he would not be going home before the second round of chemo. We were allowed then, to go out onto the front foyer/entryway/driveway, look at the stars, etc. So this time, when he told us, he didn’t mention how far we could go. So we walked three buildings over to the Scripps Center for Integrative Medicine. Behind that building is a labyrinth. I’d discovered it when I was trying to stay calm during his bronchoscopy way back in week two or so. We went over under the waxing moon and walked the labyrinth. A small thing, but it was pretty cool and we felt like we were really daring and had escaped for awhile. Gene of course, had a mask on, and the next morning I immediately checked to see if he had a fever or any other warning signs that we’d crossed the line, but he has been fine. Doc just chuckled and said he hadn’t really intended for us to go that far.

Regarding the donor issue, several of you have asked how you might be able to donate. The way it works, from my understanding, is that apart from first-degree relatives (siblings), one has a 1 in 5000 chance of being a match for someone. What that means is that you cannot get typed just to be a match for Gene, but you can join the bone marrow registry, simply by giving blood in a regular blood drive and completing paperwork to say you are willing to be a donor. Your contribution would be “for the greater good”, not necessarily directed at Gene, but you never know….they told Gene that they’d be checking the registry daily. These days it is almost exclusively a process through blood donation, not the old way of extracting the marrow, literally. The website www.bethematch.org has information on the nearest donor event, usually through the local bloodbank, in your area. There is no cost, though contributions are welcome. I still don’t know really how ethnicity impacts the donor list, and recipient opportunities, but plan to ask those questions next.

So….one more thing. Some of you don’t actually know Patty and Jim, only what you’ve read here about how incredible they are, continuing to hold us up on angel wings, or as my friend Jocelyn says, raising the bar for what friendship means. So here is a photo:

The next update will have news of being home, hopefully!

g

Scheduling Visits

Hi All,

If you are interested in visiting Gene this week, he is open for visits from 1:30 pm to 2:30 PM. This allows for two 30-minute slots per day. If you are interested, please send an email request to Jose Luis at: alvarado@mail.sdsu.edu.

Gracias,

Jose Luis

Gene's update: 2-21-10

Gene’s update 2-21-10: No numbers, No news…..continue to watch and wait. Gene is still strong, still hiking the floor, has started looking at his work email, talking with the docs about how things will be once he is home and on outpatient status. He did get some really good news, maybe not what you might have anticipated would be good news, but if you know Gene, you won’t be surprised. Doc said that once he goes home, which will mean he is no longer “neutrapenic” (extremely low white blood cell count, all the dietary restrictions) he will be able to have a beer, even, a beer a day! I think Doc knew Gene really needed something to look forward to, and that worked! Gene says he can cook and clean too, and can take over for Patty…..but those will be hard shoes to fill….breakfast, lunch, dinner, dishes, cookies, brownies, laundry, etc, etc…..and then Jim’s shoes…..if my husband spoils me as much as they have….wow, I’d be one lucky girl.

So, other than that…..nothing to report. There has got to be some news this week, at some point….both on the testing of his sisters and his numbers. We’ll keep you all posted as soon as we know something. In the meantime, we are cleaning the house, carpets cleaned, behind the furniture dust, Patty’s already started the fridge, Breezy has an appointment to have her nails done….we’ll be ready when he gets the word!

Some of you just get the email updates, and some of you check the blogspot. Sharlene and Micheal posted some cool pics of Gene on the farm, so if you don’t normally check there, you might want to go look at them: http://www.genecentral.blogspot.com.

And now a word from the horse’s mouth – Thanks to all of you for your prayers, thoughts, vibes, energy, cards, hats, food, Valentine’s cards/balloons, and just general good feelings. It means a lot to Gail and myself. It has all definitely fed my soul. While I can say it has been ‘a long, strange trip’ it has been heartwarming to have so many people rally round. Thanks from the bottom of my heart. With a little luck this portion of the ‘trip’ will come to an end sometime in the next 7-10 days and I can go home and I can start thinking about the next portion but that’s for another day. That’s about all from this horse and here’s hoping I can be drinking that 1 beer soon. Down side is that the Doctor said that many patients reported that they found that they didn’t like the taste of beer after this experience. Really, how is that even possible! Hasta Luego!

Favorite Valles Pics From Michael and Sharlene

Gene picking green chile at The Farm.




















Gene and Kara Dana checking on the green chile at The Farm.

Favorite Valles Pics From Michael and Sharlene

Time for some roof repair at No Cattle.

Gene's update: 2-15-10

View from the Room

Hat Contest 1

Hat Contest 2

Hat Contest Winner!

Gene’s update: 2-15-10

More watch and wait: Chemo round 2 ended on Friday. Gene again tolerated it very well, according to docs. He has a good appetite, he still takes his daily, or two, 15-minute power walks. Now that he is off chemo and can be unhooked from the IV for periods of time, we can walk a longer perimeter of the floor, about a one-minute loop, 15 or so times, so he gets some blood pumping and seems to have good energy.

Toward the end of this week, middle of next we should get some more news. We will find out about the success of this round in achieving remission, and we hope to have sibling results from the blood tests in anticipation of the bone marrow transplant. And hopefully see the good white blood cells coming back so that he can be sent home. He is thinking that should happen within two weeks. He has been incredibly tolerant of this going-on-five weeks in the hospital, really only getting grumpy a few times.

We had a nice Valentine celebration….Bobbie his neice contributed some great room decorations, Ann and Chuck brought more balloons (mylar), and Gene gave valentines to all his nurses…and me, of course! Mine was the best ;-) we have a tradition of Gene making my birthday and valentine cards and he did not disappoint…..his creativity is alive and well!

He continues to read lots and lots on his kindle, but hasn’t watched any movies yet…says he is waiting until he comes home for that. He’s received a lot of gifts of great hats. My sister Esther knitted him three, in his natural hair color, out of soft baby blanket material. Regina, one of his SDSU colleagues, brought him two of the kufia or kufi hats that he likes. She has a great story to go with it. She found them at a store in Las Vegas. When she went to pay for them, the clerk/store owner told her that she could just have them (not knowing anything about the story of Gene). When she asked why, he told her that in his morning prayers, the message came to him to share blessings and this gift to her was a way to share blessings. (Regina, hope I got that story right.) That story just one of the many things that bring tears to our eyes. Attached should be pics of some of his hats.

This four day weekend I thought I’d get so many of those little things on the list done….I spent two days at the hospital and two days at home trying not to take a nap and finally succumbing to a deep afternoon sleep. A combination of exhaustion and escape I suppose, but I am finding it difficult to be motivated to do much of anything.

Visitors are starting to trickle back in. We haven’t really been scheduling, but Gene says his best time is 1:30-2:30, and a bit in the evening. Weekends were a bit busier. Let us know if you can, if you want to come. Everyone reports feeling better once they see him, as he really does look good and strong. We really better go home soon, as the walls are almost completely filled with cards and wishes, and now valentines too!

Will update when there is any news, but we expect another long wait. Docs are very pleased, “good, good, excellent, excellent” and say we are in a period of “stasis” (not sure if that is the spelling).

g

Update 2-8-10

Gene’s update: 2-8-10
Get ‘er done!: Once the news was absorbed and the new course of action undertaken, Gene has been revved up and rarin’ to go. They started the second round of chemo on Friday night, so we are already almost halfway through this seven-day course. Gene is in great spirits. He is once again tolerating the chemo really well, no nausea, no major side effects, and this time, all the troubles with his chest seem to have abated, as well as the yucky rashes. And no fevers at all. He sounds and looks strong, and is still doing his laps, doing morning exercises…..as he says, he is doing his part.

The docs are really, really positive about how well he looks and sounds. And that makes Gene feel really happy and positive, and that helps me feel really happy and positive. Yesterday doc told Gene that they probably would not need to do another bone marrow biopsy at this time, or at the end of this round, because they’d be able to get the data they need just from watching his blood counts. They are expected to go up 7-10 days after the end of the chemo. So this chemo ends 2-12, so somewhere around 2-20, we should see new, good, blood cells growing….and Gene gets to go home shortly after that.

We are still waiting to hear on the results from the blood work from his sisters. If there is a match it means they can get to the bone marrow transplant sooner, and if they have to go to the world-wide registry, it will just take a little longer. But for right now, we are really feeling like things are looking up, we’re climbing out of a hole. We both know that there can, and probably will be, more bumps and potholes…but for now, we are feeling, and looking good.

Gene has been trying on lots of hats, and seems to have settled on a few that he likes. He still has a bit of hair, and it isn’t falling out at the same rate as it was last week. That constantly falling out hair was a drag. But now we are used to his new look, and he is hanging on to some facial fur for now. The rasta cap with dreads attached arrived today for a good chuckle, Mike and Eileen….thanks…now we’ll see if he’ll actually wear it out in public!

Other gifts and cards continue to arrive. Your notes are so appreciated, and usually bring tears to our eyes, and sometimes chuckles. We have a beautiful prayer quilt that was made by a quilting mission that Jim’s sister Lynn Greer works with here in San Diego, at the Point Loma Presbyterian Church. The quilt, was I think, just randomly selected based maybe on colors Gene likes. The basic quilt is made and then as they “quilt” it the prayers are said for Gene’s recovery. Two really cool things about the quilt, besides all the love and care and prayers that went in to it, and all the energy it holds, is that the fabric pattern is horses. And Gene is the son of a cowboy who grew up with horse décor, so that is quite perfect. MP would love it! The other neat thing happened today. A former colleague of Gene’s who has long since retired, was actually not in his exact department at SDSU, but had a friendly relationship with Gene when Gene first started at SDSU back in 1993, sent a card today. Apparently he is a member of the same church, saw the quilt and/or prayer list, and was dismayed to discover that it was the same Gene Valles….so he sent along a card with his best wishes….one of the many unexpected but small yet positive outcomes of this process. I spend a lot of time in gratitude for the outpouring of support we are receiving. It helps me through the more challenging days, which do crop up, sometimes unexpectedly.

Speaking of support, I had to get by without Patty for a few days while she flew back to ABQ for Robyn’s shower. Jim stayed behind, kept me company at home, watched the Super Bowl with Gene at the hospital, while I actually relaxed a bit at home, got a few (very few) things done. We did okay without Patty (no home cooked meals, but Jim made his first guacamole!)…..but the pajama wash and return cycle got messed up…somehow Gene ended up without a top to one set. When he asked how that happened, all I could say was, “Patty”….not blaming her, just that laundry was one of the many, many things she has just taken over….and Jim and I just didn’t have the whole program as together as she does. She wasn’t home 10 minutes before she was already doing things for me. I’m not just lucky…I’m becoming spoiled!

So, time for our walk around the unit…we are famous in these parts for them. Gene does the afternoon walk with Jim or Patty and the evening one with me. We’ve figured out that he can get homemade brownies as long as they are frozen immediately in individual packages. So we’ve got the “gain weight in the hospital” going on.

We feel all of your love, energy, prayers and good thoughts and it’s workin!
g



gail.moriarty@me.com