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