No pictures this time, so it should go faster for both of us. First of all, I know I've been neglectful in keeping up with this blog. I am bad about it. I'm just weeding out the REALLY interested parties from the "kind of" interested parties. It's an excuse, really. Anyway, some updates....
Back in the beginning of March I was having dinner with Dr. Jeffrey Wolf, the head of the oncology, hematology, bone marrow transplant department (I'm not kidding, that's what it's really called at UCSF) and his very significant other, who happens to be a research nurse at Stanford in their leukemia, myeloma and transplant department, who I'll call J. We're celebrating the 4 year anniversary of my transplant. Dr. Wolf (Jeff to me) turns to me and asks if he can share some of my story with J? Sure, why not? You've shared it with thousands of others at conferences around the world. As he does, she must have said, 'Wow!" a dozen times, with a few "Really"s and "Serious"s thrown in for good measure. Then he dropped the bomb. He said, "And he's IgM." 'What?" "He's IgM!" A slow "Woooow" was her reply.
Now, I know from researching it, and from what he and other Drs. have said about it that IgM is very rare, and they rarely live, but the way he said it, and the way she said it, made me realize that even THEY thought it was something special (at least to them). So I said to Dr. Wolf, "So. I probably should have asked you this before, but how many IgM patients have you had?" Before I tell you his answer, a little history on him, in case you don't remember. He's been working in hematology, and specifically with leukemia and myeloma patients for about 30 years. He started the bone marrow transplant unit at City of Hope. Now it's famous. He started the bone marrow transplant unit at Alta Bates Hospital at Berkeley and made it world class. He came to UCSF 2 years before I got there, and brought all of his best people from Berkeley, and they had to close down their unit. He's treated myeloma exclusively for 14 years. He's the world famous guy that people from all over the world come to be treated by. He speaks at most international leukemia & myeloma seminars. You get the picture. He gives me a wry smile and says, "You're my second." I give him, I'm pretty sure, a dumb look back and ask, 'So what happened to the first one?" "He died in the first year." The Dr. Wolf turns to J and ask her, "You've seen all the pathology on the myeloma patients at Stanford for the past 8 years. How many IgM patients have you had?" She thought for a few seconds and replied, "I can't remember any." And Stanford treats twice as many myeloma patients as UCSF. So I replied, "So when you call me your 'special study', you weren't kidding, were you?" "Nope." "So why haven't you seen more of them?" "They die before they can get to us."
As of May 13th, it's been 2 years since I got off of my daily maintenance chemo. They said 4 months off before the cancer comes back would be good. 6 months great. And 8 months a miracle. How do you explain 2 years, and counting? I've had many great experiences helping other myeloma patients as they contemplated whether or not they should go through the transplant process. One man from Poland who was afraid. The woman next to me at the infusion center during our infusions last Tues. who's had 2 relapses during my time.
During my last visit to UCSF a month ago Lisa Dunn, one of Dr. Wolf's nurse practicioners, handed me a note with a name and telephone number. She explained that the man had real doubts about having the transplant and didn't completely trust them. Dr. Wolf had suggested that she give another patients' name and number to her, but she told me that she felt that I was the right one to speak to him. For privacy reasons I won't tell you his name, but I can tell you that he has a very thick German accent. When I called him we spoke for an hour about Germany, in German. He's from Heidelberg area. He's a chef living in Santa Rosa for now, waiting for his transplant, or further treatments even if he doesn't do the transplant. We talked about Germany more than we talked about our cancer that day. He sees Dr Martin, Dr Wolf's assistant head guy on Tues. July 1st. I see Dr Wolf on Weds. July 2nd. So he's going to come into the city to meet me at the clinic after my appointment so that we can go and have lunch and visit about the transplant. How fun is that? He even called me early Fri morning to verify our 'appointment'. Very German like.
The miracles and blessings just keep coming. I had an opportunity last Thursday while meeting with a client to share my testimony about the power of prayer, the atonement and our Heavenly Father's and Christ's love for us.
Friday on my way home from work I visited with the family of a client that's dying from melanoma after a 2 year battle. Her office is the 2nd door down from mine at work. The family isn't very religious, but knowing that I am, asked me to visit with her about letting go. She'd/they'd been told it would be "only a few days now". What a wonderful blessing it is to understand the plan of salvation, and to be able to share it when it can bring some peace and comfort.
I hope that my experiences can help you understand the marvelous love that our Heavenly Father has for each of us. You all certainly know as I do that of myself I am nothing special. But doing the Lord's will and sharing His love with His children, is special. I'm grateful for that opportunity, and thank you all that have helped me get to where I am through your love, fasting, prayers and friendship. I owe you my life.