Happy Holidays!

I would be upset about losing my hair, but I didn't have all that much to begin with! However, while there may not have been much there it sure was a good insulator!

Beck and I just returned from seeing Dr. Linker at UCSF. He says the chemo did (is doing) exactly what it was supposed to do. My blood counts are better than they’ve been in a long time, the Sweet’s has not reappeared, there is no pain, and the steroids are down to 5mg daily. All this is terrific. Next week (the day after Christmas) I will have another bone marrow biopsy. I agreed to allow them to do it as long as I know nothing about it. The minute I do, we stop and rethink the process!

Two weeks after the biopsy, there will be a family meeting at UCSF to discuss the hard truth about what will happen, and what we all can expect. Linker blocks out 1.5 to 2 hours for this meeting in off clinic hours so we’ll not be disturbed. Approx 2 weeks after that, I will enter the hospital for the transplant. The date won’t be finalized until mid January, but it likely will occur early in February. Personal to Diane: Lisa will contact you directly to discuss time tables, events, etc.

For now, I just recuperate. There have been bouts of nausea, although infrequent. The doc has given me a stronger medication to fight that. I still am weak and tire easily, but it seems to have improved when compared to the day I returned home from the hospital. As the doctor said today, we have to let your body get strong before we attack it again. Frankly I must admit I’m not looking forward to going back there. I wish I hadn’t had a preview, but I am determined to fight this disease and to eventually return to cycling and to the golf course. The ultimate goal is to ride Seattle to Portland July 11th and 12th 2009. I’ll update when the dates are firmed up. Until then, Merry Christmas to all (or Seasons Greetings as the case may be).

Rick

Going Home with a Sibling Donor

When I arrived here 26 days ago, the expected stay was to be 30 days. It appears now that I will be released as early as tomorrow. More on that later.

The larger news is that my sister Diane has been found to be a perfect donor. This is important for several reasons. Had a sibling match not been found, I would have had to search the National Donor Registry. At minimum, that would have delayed the transplant by at least a month, and probably much longer. Worst case, there would be no match found. The other reason a sibling match is important has to do with transplant complications. The single most worrisome side effect is Graft Versus Host Disease (GVHD). In a healthy system, the body's immune system recognizes and attacks threats. GVHD is the opposite; the newly transplanted blood knows it's in a different environment and begins to attack the host (me). This is potentially life threatening if major organs are attacked. GVHD is also a very common side effect, monitored and watched very carefully. With a sibling donor, frequency and severity are reduced. So I'm thankful I have a sibling donor.

As for departure, I am scheduled to be released tomorrow as of this writing. One of the conditions that needed to be met was that the Infectious Disease docs had to approve my release on a specific oral antibiotic. I was just informed that that approval has been received. I also have to meet a minimum oxygen saturation rate which test I passed with flying colors not 10 minutes ago. However, as much as I hate to admit it, plans could change, and I may not be released tomorrow. The hospital has to get all it's ducks in a row, hoops have to jumped through, paperwork must be completed, etc. Keep your good thoughts coming.

We have only just begun this journey. I still have to fully recover from this chemo, and then the transplant looms. However my blood counts have rebounded remarkably. There's no reason to believe my marrow won't continue to produce healthy cells long enough to reach transplant. There are several silver linings already. My siblings are closer than they have been in years. The disappointment felt by Steve and Linda is a measure of a love we never shared before. And the joy found by Diane is a pleasure to see. In addition, I have received cards and well-wishes from all over the United States from fellow stamp artists that my sister Linda knows, and was further extended by someone named Diane S. (whom I have never met) to the "Guardian Angel Group." Beck and Emily have become fast friends with two women each of whom rents space near UCSF. They came to us through friends who made calls on our behalf. And all of that doesn't begin to cover the endless cards, calls, love, and support that we have received from all of you. Words can not express our appreciation.

More as events dictate,

Rick

"It's Christmas Time in The City"

"Ring-a-ling! Hear them Sing! Soon it will be Christmas Day!"

It has been a week of downs and ups. Rick did not, unfortunately, start the week off in a very good state, and it went downhill from there. He developed 2 different infections, that worsened his condition. Thursday he began showing small signs of improvement, that have continued today. Both Becky and Emily spoke with him this evening and noticed that he sounded a little more like his old self. It would appear that the chemo has done its job, and the blood counts are SLOWLY beginning to rise.

SHE'S A MATCH!!! We received the good news this week that Rick's older sister, Diane, has been deemed a "perfect match!" Should Rick continue to improve, the hope is to allow his body time to rest and gain enough strength to receive a transplant roughly 6-8 weeks after this release. During this time, Diane will go through her own medical work-up in order to be declared in "good medical condition" for final approval. Once again, all the stars must be aligned for the next step to occur.

Emily and Becky will be back in The City for the weekend. We all so greatfully appreciate the outpouring of love, cards, gifts, and words of support. It has meant the world to Rick to hear the voices of those who left messages, and encourage the continued calls. We are continually greatful for all of the love and support that comes our way.

Lots of Love and Hugs

Not feelin Too Hot...

...or perhaps the opposite is true. On Saturday Dad took a downward turn. He started feeling rather 'punk' with general malaise. He didn't have much energy and didn't want to do anything other than lay in bed without TV. He even turned his nose away from food. On Sunday he spiked a fever, which has since broken, however the nausea has come back with a vengence. He is most uncomfortable and his spirits are quite low. Blood cultures have been taken to check for infection, but the doctors seem confident that this was to be expected and a result of the Chemo. At this point his blood counts remain very low, which is not unusal, they would expect the counts to begin to rise by the end of this week. He continues to have red cell and platelet transfusions as needed.

This turn has been felt deeply by all of us. Up through Friday he was feeling quite well, he had a lot of energy, and was getting his minimum of 10 laps around the floor (approx 1 mile) in. In fact people would move out of the way when they heard him coming, he was a speed demon!

With regards to Sibling donors: 2 of the siblings were eliminated in the 1st round of testing, the 3rd is being advanced to the next round.

You continued thoughts and prayers, and overflowing generosity has been a blessing to, and enjoyed by, all of us. His walls are bursting with cards and well wishes that you have all sent, and we make sure that anything that arrives at the house gets to him. Please continue to lift us in your thoughts prayers in the coming days.

Lots of Love, Hugs, and Thanks

On Anti-biotics and Lower GI Distress

Today is Monday, my 13th day in the hospital. I have been biopsied, cultured, and tested. Then they poisoned me. But I am STILL ALIVE!

I survived the dreaded day 7 chemo without nausea and vomiting (OK with only slight nausea). Everyone is amazed, not the least of whom is me. I figured this would be sort of a dry run for the transplant, but now I don't know what to think (except it is NOT a DRY run. I am left with a certain malady not normally spoken of in polite society. It involves keeping myself proximate to the bathroom. It has been ongoing for 4 days. This morning they think it has to do with the amount of antibiotics I'm being given. (All the cultures are negative). The day before I was hospitalized I developed a lump which turned out to be cellulitus (sp?). No biggie (actually it got quite big). It's gone now, so the antibiotics used to treat it will be suspended tomorrow. Hopefully that will also solve my other problem.

The hospital is a marvel of continual sameness. They have figured out how to make their patients the top priority while providing pretty good care. You do NOT, however, want to be in need between the hours of 7-8AM or 7-8PM. That's when the shift changes and out going nurses give their report to incoming nurses. Response time during those hours can be slow; conversely you can run around naked in your room if you're so inclined as you'll not likely be walked in on. Then rest of the time, vital signs are taken, food trays delivered and picked up, meds given, doctors visit, all on schedule that's determined by God knows who (and usually at the exact moment the mystery is about to be revealed on the show you've been watching). Oh well (or as today's nurse whose name is Harrison would say "Oh my glands!")

I am faring quite well all considered. There are other patients on this floor who have it far worse. And on those nights that I do my laps, I see a waiting room full of people who have loved ones in desperate straits, possibly with no warning, getting a crash course on everything I've learned about unexpected illness, frailty of life, and who loves you. Keep those cards and letters coming...
Rick