Hold on Visitors Sunday

Gene is not feeling so well, so I'd like to rescind that "good time to visit". Call me on my cell 858-337-5358, if you were planning to visit today, and I can update you, see if anything has changed. Day three of superchemo and he is feeling it.

g

A Good Time to Visit

We've moved back into Room 356....same room, we're revising the decor! Gene seems to be handling the Adavan and chemo combo pretty well so far, so if you have time this weekend, it could be a good time to visit.

Surgery was a bit complicated....they put in the new "central venous catheter" and tested it and it did not work, so they had to take it out and put another one in. So the thirty minute surgery turned out to be two hours. I was only slightly extremely anxious, but that too is behind us. They've just given him his first transfusion of his new blood type, O+. Hard to understand how one day of chemo makes it work, but it is so, the cells are "washed". So when his new cells arrive next week they'll be in familiar O+ surroundings, with just a bit of A+ mixed in for the time being. Tomorrow is day -6.

Countdown has begun!

Gene’s update: 4-14-10

Tax day…if only we really did have a say in how that money will be used….

We are in countdown. Gene has been home, or more accurately, on outpatient status, for three weeks. Last week especially, was a really good one. We were done with the daily trip for chemo, and that drug, while having no apparent negative side effects, eliminated the night sweats and temperature spikes that seem to be a marker of Gene’s leukemia. I was still on spring break, so we had a mostly relaxing week of feeling as normal as possible under the circumstances. Gene is a homebody anyway, so being limited to staying home was no problem for him. We had neighborhood walks almost everyday, and his appetite was great and he was able to gain back about 3-5 pounds.

Thursday we had our 3+ hour meeting with the transplant coordinator, got the calendar of events and all the scary news about drugs and side effects. I’d read most of the information, but for Gene, a lot of it was news. His commitment to a positive outlook is as strong as ever. When he asked me if they’d told us any statistical outcome data, I could reply honestly that, “no, they never told us any numbers”, but Gene later read one of the stats that haunts me, that the statistical outcomes for one-year survival for Bone Marrow Transplant include a 25% mortality rate. But of course, we will be in the other 75% because of the love, prayers, and incredible care and support we are receiving.

Had one of my first “caregiver lapses” and lessons, and then another one on top of that. It is a sobering responsibility to be in charge at home, as well as advocating at the hospital. When they changed his picc line dressing last Tuesday, a new nurse to us did it, we were busy chatting and Gene didn’t notice that she used a different type until she was done. It was a type that he’d had a bit of a reaction too, when he mentioned it, she offered to change it, but we didn’t want to trouble her. She discussed it with the charge nurse and a few others and the consensus was that it would be ok for this week. Later that day Gene thought it wasn’t completely sealed, but since we were returning in two days, we’d get it checked. On Thursday that nurse said it was ok, just some material from the application, blah, blah. On Saturday it started looking a little cloudy, but we were going back Monday, Gene didn’t want to deal with it (I guess neither did I), although he was touching the area a lot, no fever, so we left it to Monday. He broke the rules (so easy to do at home) and didn’t shower on Sunday so we didn’t look at it, and Monday it looked yucky. When we got to the hospital and they took it off there was some yeasty-diaper rash growth….about 8 nurses and specialists came in and made faces, doctor was almost sort of angry….”culture it…bacteria, virus, fungus, we’re getting that line out of there tomorrow”. They cleaned it up as best as possible, which burned for hours. That was Monday morning. Then we went home and Gene was not feeling so well. I was kicking myself for not attending to it Saturday, but hopefully it will be okay and also be a lesson.

Monday night he had to go back in for a planned night in the hospital so that Tuesday morning he could get a preliminary test of the super-chemo to see how fast it moves through his system. So at least I knew they were looking at it. After they completed that test they removed the line (scary right there, but seems to be fine). My friend Ruth picked him up from the hospital so that I could work that day.

That’s when the second lapse happened. I know they were giving him Atavan, a drug like Xanax, anti-anxiety, that also prevents seizures that the chemo drug can cause. (Just one of MANY awful possibilities that we try to put in the category of “and aspirin can kill you”). What they didn’t tell me was that he would be on it for 24 hours. I came home from school, he was watching tv, snacking. Things looked good so Susan and I went for our walk. When I got back he was crashed out and remained really out for a few hours at which point I called the hospital to ask if this was normal. That was when they told me that he was on this med every six hours, that we needed a prescription filled and it was two hours overdue.

Ran to store, got scrip, got it in him, he slept again. Woke him to eat, he ate really well….good thing since he’ll have to go almost 24 hours without eating. He crashed really heavily again….when it was time for his next dose I could hardly wake him. Called, Nurse said wait a few hours. He actually fell down upstairs in the bedroom while getting undressed. So I was panicked he’d try to go downstairs….and it affects short term memory so he’s not remembering much of this. So right now he is sleeping off the last dose, and we have to start to prepare to go back to the hospital at 2 for outpatient surgery to place a new central venous catheter, this time in his chest, for the transplant tranfusion, and all the rest of the stuff for the next 3+ months. So he’ll be out of it tonight and I’ll be monitoring for any signs that something is wrong from surgery that just placed a foreign object right into the top of his heart. Oy. I will mention that I think they should have called me to tell me about the need for the prescription, and to be aware of the heavy dose level, instead of telling Gene and counting on him to tell me….which he forgot to do, as short-term memory lapse is one of its side effects. Anyway, another learning experience.

Then tomorrow evening at 8 he checks back into the hospital for the beginning of this 3-6 week transplant process. Chemo and other drugs, anti-rejection, etc, start Friday. Transplant takes place next Friday, April 23. Transplant day is “day zero”, they also refer to it in the BMT world as “your second birthday”, but Gene is not embracing that notion too much at this point. Docs say that days 4-14 are the worst for side effects from chemo. Although Gene reiterated his mantra of “and maybe not”, regarding side effects, Dr. Mason was very firm in telling him that he would have nausea, diarrhea, and serious mouth sores (mucocitis), for which he would receive a pain pump and possibly need intravenous nutrition for a time. So that will be life for the two weeks after transplant, hopefully not any longer. Then the new cells start to grow and we see what happens. Dr. Mason said that we can predict with complete accuracy what the response to the chemo will be, but that the response to the new cells is a “black box” and each person is different, and there is a range of possible responses. My colleague Kate suggested a visualization/meditation that makes so much sense to me, but that I’ve not yet had a chance to share with Gene as he has been kind of distracted or drugged. She suggested that rather than focusing on anti-rejection, worrying about rejecting, that we think of it on a tribal level, the cells aren’t really foreign, but part of Gene’s genetric tribe, and he is welcoming them in. Makes good sense to me, we’ll see what Gene thinks…have a week to prepare.

So this has been long and filled with more detail than many of you needed or wanted, and less focused on the healing time we had at home and more on the initially challenging but eventually healing time in front of us. My friend Susan reminded me again yesterday to not focus on what is far ahead, just keep focusing on today….Gene’s mantra too.

So today, is getting this kinda doped-up guy safely into the shower, looking at the picc-line problem site, getting a super-shake made for post-surgery, packing the hospital day bag, and getting through this “minor” surgery safely. Hopefully tomorrow the drugs are out of his system and we can have some good relax time during the day, eating lots, doing the last “normal” for about a month or so.

This next week I think will be a good time to resume hospital visits. He may be really sleepy if they keep up this 2 mg. of Atavan every 6 hours…..we’ll see. But he’ll not be feeling badly from the chemo until the following week. So do come in if you are healthy and have time. If we are lucky, we’ll have our same room with a view, but they’ll know at the nurses station, and I’ll send out an update about visits once we know more there. Post-transplant, although he won’t be restricted from visitors we were told, I think I wouldn’t want visitors until we move out of that very difficult two-week period. So check with me on that.

Bottom line from medical team, “have him home by June”. I’ll send out an update pre-transplant so we can all do a “harmonic convergence” on welcoming Gene’s new cells, his new immune system, and encourage it to get busy taking out any remaining leukemia cells. Thanks for reading this very long blog, and thanks for your continued support, concern, care and love!

Big Nurse, aka, Mrs. Valles, aka g

Good Friday Walk to Chimayo

Several members of Gene's family joined with thousands of Holy Week pilgrims who walked along the roads into the valley at Chimayó to visit El Santuario, a holy site where a chapel was built in the 1800s on ground believed to have miraculous powers. A small room at the back of the chapel is called El Pocito. It is also known as the "Room of Miracles." There is a round hole in the floor, through which people scoop out some of the sand. Some kneel and kiss the earth; some rub it on their bodies or onto photographs of family members too ill to travel. Most people carry home a small bagful. There are photos of Gene's family members wearing the t-shirts that they made with Gene's picture on the front. Some of the photos from their walk are posted above.

UNM Donor Drive, Wednesday, April 7, 2010

Today was a good day. Aubrie Vargas did a great job of getting us all organized and the Afghan Student Group kept things running smoothly by providing student volunteers throughout the day. Jim became a master at making up the test kits, Patty D. worked at station #2 with forms and information and Patty K. worked station #3 explaining cheek swabs. Robyn Mead came to join the Registry and brought baby Ryan, just four weeks old and Oh, so cute!!! Gene's niece, Ronnie, walked over from North Campus on her lunch break and stayed as long as she could. Kara came after class and then a long time friend of Gene's, Wyman Edwards, came to join the Registry also. Another friend, Vicki Kaufman, teaches math at UNM and she came by to sign up after her class today too. Several Lobo football players joined up and some of the Lobo Women's Basketball team plan to come tomorrow. Tons of support! An unofficial number of 106 new potential donors today and we still have the second day tomorrow, Franny Dever plans to volunteer then. I look forward to another day of filled with caring people taking time out of their day and their lives to come in to join the Registry just because they might Be The Match that answers someone's prayers.
Patty

Gene’s update: 4-4-10

Happy Easter, Happy Passover! We are home, just being lazy, trying to sort of just freeze time….but it isn’t really working, time is zipping by, as usual. Gene has been home for almost two weeks. At first, we thought it was just a 3-day leave, then found out we’d remain in outpatient status as long as possible. And we now know more.

This past week was tiring as Gene had five days of outpatient chemo. Half of the days he’s been home we’ve had to spend at least half the day at the hospital, but at least we come home again. He tolerated the chemo really well, apparently, virtually no side effects, whether that is good or not we’ll find out as the results trickle in with the blood work this week. At first we thought the chemo was actually energizing him, as his energy levels improved immediately, day one. Then we found out that there was steroid in the “pre-medication” that was designed to take care of some of the side effects. They stopped that on Thursday and we could see the difference in his energy levels. Tomorrow we go in for a blood transfusion, and some blood work results. Transfusion, which seemed so frightening at first, is now so routine.

But the really big news is that we have a date for transplant: April 23…..19 days from now. Gene goes back into the hospital on April 15 for the “conditioning regimen” to prepare his marrow to hopefully accept the new cells. We were told that the donor has passed her physical and will donate her cells on April 22. So those of us who are praying for her, please continue to do so.

So, this is the really scary part that 2 months ago I couldn’t even read about without getting nightmares. Last night I re-read the book they gave us on transplant and I was sobered, but not sleepless. We’ve lived through some pretty scary stuff already. We had been scheduled for a two-hour “education” session with the transplant coordinator last Thursday, but she had to cancel for personal reasons and we will reschedule this week. So I’d hoped to know even more by now. We still don’t know for sure if they will go for the more aggressive conditioning treatment, which includes Total Body Irradiation, but both the doctor and coordinator kind of hinted that it was not the route being considered due to Gene’s age. Either way, he’ll be getting a lot of really serious meds, chemo, immuno-suppressant, anti-rejection, and more that we don’t even know about yet. He’ll be in even more fragile condition than he is now, for awhile.

The actual transplant is really just a blood transfusion, extremely carefully monitored for rejection and side effects. The week of “preparation” takes its toll, and the two weeks after are very intense as well. It takes about two weeks to know if the transplant was successful. There probably won’t be visits and Gene may or may not feel up to phone calls….it all just depends on how it goes. It will be the time when as caregiver I have to gown up, mask up, etc. We expect he’ll be in the hospital for about a month. The next three months are critical for rejection and complications as the new cells hopefully “engraft”. It can take up to a year for his dna to change to the donors, including his blood type changing, and more. Until his new immune system has completely taken hold, he will still be in great danger from infection, viral, fungal, bacterial, and even protozoa. In some ways what we’ve gone through will have somewhat prepared us for what we have to face and in some ways we won’t know until we get there.

Being at home has been much more challenging than I’d imagined, emotionally and physically. Gene is tired of being sick and all that time putting on a happy face for nurses, doctors and friends left a backlog of anger and frustration. As “Big Nurse” my attempts to maintain microbe-free procedures are not always welcomed. During chemo, sheets and towels, clothes, need to be washed separately, daily, hot water, hot dry (which we never do….we always line dry, but can’t now), all dishes have to be sani-cycle, also something we never did. I always did lean a little germ-concerned and am now in danger of becoming germ-obsessive, well, actually, I’m there! And then wiping down frequently touched surfaces….my hands are chapped! And I’m learning every day about the emotional demands, not learning how to handle them, just learning about their depth and complexity.

I got a great cookbook from my friend Wendy Hess who is a clinical dietitian, The Cancer-Fighting Kitchen, it is super-nutrition oriented, so I have some great recipes to try….the 40 min. total prep one I tried took me 2.5 hours….but I’ll get better at it! It is definitely easier cooking at home as we don’t have to freeze and then microwave, but still lots of leftovers that Gene can’t eat. And “neutropenic cooking” is still more time-consuming than my normal cooking routines.

We had two sets of New Mexico visitors this week. Rob Evans (Patty’s brother) and Wendy Linger came for an afternoon visit, Wendy brought Gene a beautiful scarf into which she’d woven lots of care, love and health. Then Gene’s friend Howie, with whom he has been playing since they were five, and his wife Kathi, drove in from Grant County for a two-day “drive-by visit”. They stayed on the ocean in Pacific Beach and spent the evenings with us. We had a great fish dinner together one night, and lots of good laughs. And Howie and Kathi had stellar SD weather….big waves, rain-washed crystal blue skies. That was all in the midst of chemo, and Gene weathered it well. Yesterday and today he sat outside for a bit and the sunlight was very healing (in very small doses!).

So, I have one more week of spring break, and then try to decide how to handle the coming one to three month intense experience, in terms of work. Right now I can’t imagine how I could work as this feels like a full time job and we are not even in the most difficult part. And then there are taxes….and garage clean-up, and a jillion other little things I feel like I should get done, but that is normal spring break stuff! Most days feel a bit like normal, but some days I feel really really sad. From Breezy’s perspective it looks pretty normal, she doesn’t know I’m freaking out when she sneezes at night just inches from Gene’s head…and I’m learning not to share too many of those worries with Gene either.

We got a prayer blanket from Mendy McClure, one of Gene’s colleagues, from a ministry at her church, so now we each have one to snuggle under while we watch tv or read. The generosity, concern and caring that you’ve all shown us so far have been so overwhelming and I’m so behind on saying thank you. We now know that a year from now, we might be looking at life as normal as can be after going through this. Hopefully. Transplant is not without complications, but Gene is focused on the “after-transplant” time, so as much as we all can visualize and pray for a high level of health for Gene, please continue to do so.

So many of you have offered to help, and I’ll try to be better about knowing what to ask for. As I’ve said, it will be a long haul, and right now I’m trying to focus on the one more week that I have off, to continue to try and suspend time, and to hunker down and gather our energies. In this season of renewal, we are so fortunate that Gene is being given an opportunity to extend, and renew, his life. We are so grateful.

And we are receiving, and are so grateful for, all of your continued love, caring, concern, cards, thoughts, gifts, messages, and prayers. Thank you.

gail

gail.moriarty@me.com

UNM - "Be The Match" Donor Drive

The University of New Mexico is holding a
Be The Match Marrow Donor Drive
Wednesday, April 7, 2010
Thursday, April 8, 2010
9:00 am to 3:00 pm
Student Union Building, Ballroom B

Registration is done by a simple mouth swab.
If you are a match for a patient in need, the most common way to donate is similar to donating blood. It's simple to do and could save a life!

If you live in Albuquerque please plan to come to the drive and register.
Please share this information with everyone you know in the Albuquerque area and encourage them to do the same. Thank you!