Anniversaries

This past month has been full of anniversaries and, of course, we celebrate the start of a New Year tomorrow. A year ago today we got the formal diagnosis of central nervous system lymphoma, and that anniversary followed the anniversaries of the onset of neurological symptoms, an abnormal MRI, and a brain biopsy. So 2009 began inauspiciously and turned out to be a year we won't be sorry to see in the rear view mirror.

On the other hand, the past year reinforced to us the preciousness of relationships. Jim and I learned that, while we love our comfortable home in the shadow of the mountains, when we just have each other in a hospital room, it's enough. Family members sacrificed again and again to lovingly care for us. And both old and recent friends showed us what friendship really means when times are tough.

One key anniversary a week ago was the date we celebrate as Christmas, when God became a tiny human being so that we can have abundant life, both now in the midst of the ups and downs of this life, and in the eternal life to come. That hope has kept us going.

Finally, a quick update. I'm currently off of all IV meds and growing a little stronger each day as physical and occupational therapists work with me almost daily. My intestinal issues are healing more slowly that I would like, but there's progress there as well. My blood counts are stable if not particularly robust yet so I'm able to get out occasionally for a meal or retail therapy. :-)

So Happy New Year to everyone who has been following my saga! Thanks for your prayers and encouraging comments, and may God bless 2010 for all of us.

Home Sweet Home!

Jim has been keeping up my blog, and yes I am home! I came home with two IV meds that I had to continue. One I am already finished with, the other IV will be finished by the end of the week, and then I'll have more flexibility with out being attached to an IV pole.

We have had great in home nursing help. I have a CNA (Certified Nursing Assistant) coming twice a week to help me with my shower, a physical therapist who comes three times a week, an occupational therapist who comes a few times a week, and an RN that comes on Mondays to draw my blood. I also have regular oncologist appointments every other week.

I was in the hospital so long this time (90+ days), and in bed most of that time, that I've lost my ability to walk, but do OK with a walker. My goal is to walk unassisted and to even climb up and down the stairs by myself.

Being home is wonderful. I get to sleep in my queen-sized bed with my husband, Jim! (Two people don't fit in a hospital bed...we tried that.) I don't have to eat hospital food (Jim is a great cook and our friends have generously made meals for us).

Stem Cell Transplant, Day + 93

We're finally home! Denise was discharged from the hospital on Monday, the 16th, but the doctor wanted us to stay closeby for a week or two. So we stayed at the Fisher House until yesterday when the doctor decided that Denise's labs were so stable that she could go home without much risk. She still has some mobility issues and her GI tract is not back to normal yet but staying in the hospital wouldn't have made those any better. It's good to be back in our own space although it was nice to have a nursing staff, housekeeping, and room service at the hospital.

Stem Cell Transplant, Day+87

Early in the week, it looked like Denise might have been discharged today, but her mobility and GI issues have improved more slowly than we hoped. The doctors are shooting for a release Monday now. I'll let you know when we leave. It looks like initially we will go to a Fisher House a couple of blocks from the hospital for a week or two (I'm already staying there). The Fisher House is a guest house for families of patients who are veterans, much like a Ronald McDonald House if you're familiar with them. This one was previously the Commander's Quarters for the old Fitzsimons Army Medical Center, so it's pretty comfortable. Anyway, please continue to pray for rapid improvement in Denise's mobility and GI tract, and for her confidence.

Stem Cell Transplant, Day + 10 weeks, 2 days

Sorry that it's been a while since the last update, but there's very little new to report. We're still in the hospital and Denise is still being treated for various GI viruses which may be showing some slow improvement. The spinal rituxan brought a quick response to the Epstein-Barr virus that showed up again in her spinal fluid; the spinal fluid sample last Friday was negative, but they will likely give two more injections for good measure. Meanwhile, the longer she's in the hospital (finishing week #11) the more things pop up like muscle spasms and skin problems from inactivity and long periods in bed. No light at the end of the tunnel yet.

Tomorrow I'll out-process from my Air Force civil service job at US Northern Command and effective Sunday, November 1 I'll be an old retired guy.

Jim

Stem Cell Transplant, D+Several Weeks

Jim again. Several of you have asked about Denise so here's an update post. We're still in the hospital five weeks or so after the last post in which I hoped we'd be gone in a week or so. Basically, it just takes a long time for one's GI tract to recover from the harsh chemo Denise received to prep for the transplant. She has very slowly improved with increased capacity for eating normally and reduced diarrhea and abdominal cramping, but that's been an up and down process. Right now, she's having a bit of a setback with a resumption of pain and diarrhea and will have a colonoscopy tomorrow to find out why. On the plus side, her transplant is solid, with strong blood cell counts except for platelets which are still low. This is getting kind of old.

Stem Cell Transplant, Day+15

After some ups and downs the past few days that required another stint in ICU, I think we can cautiously say that Denise is on the road to recovery now. Her counts are good, all the various tubes are out, and she's talking and even smiling again. She's still getting lots of IV meds, principally antibiotics for the infections, but hopefully she'll be able to start back on a liquid diet tomorrow and more robust food soon after. Hopefully, we'll be able to leave the hospital for our apartment within the next week or so.