Dry Run

After 2 frustrating days of talking to voicemails, no returns of email messages and talking to people who did not know what the hell they were talking about we found out today that the earliest I can start is December 5th because they are solidly booked in November because of the holiday next week. Then I have to repeat all those same tests I did back in October i.e. blood work, all the radiology studies and bone marrow biopsy before I can begin the protocol because more than 30 days will have elapsed from all those October tests to the start of the study. This was something we were never told back then. I gotta say there is a so called study coordinator there who over the past few weeks either gave me no information or grossly incorrect information that I would like to BOOT IN THE ASS!!!

Actually I took this all pretty well once I talked with the clinic nurse and cooled off, but then again you all know what a patient person I am anyway. My sainted wife took the news a little worse and was quite pissed – you could have fried an egg on her head. Believe me; you don’t want to be around Mary Jo when she is pissed off. And in the midst of all that one of our dogs ran off and disappeared. Fortunately I found her about a half hour later when I was driving around searching and Mary Jo didn’t know about it till after I found her. My life could have ended right there.

But the good news is I finally got a hold of my doctor’s clinic nurse today who set everything straight and finally explained to me what the hell was going on and why. Consequently we came back home today and will be here for Thanksgiving with our kids. It is likely we will be in Little Rock for Christmas but what the hell; at least we finally have a plan of action and I’d rather be home for TG anyway - more food. So it’s all BUENO! And after spending more time in Little Rock the past few days, I really wish that many years ago I had gone into dentistry and moved to Arkansas. I could have retired at age 40 or less. (JUST JOKING)

This will also give me time to write a lot of thank you notes. I am still searching for words to express my gratitude for what we were given at the party. Our drive home was speechless as MJ and I were numb in shock. I cannot recall being so taken aback in my life. It was unbelievable, like on those reality shows. You are all amazing people. I am so humbled by your caring and kindness.

The road to Little Rock

Our first visit to Little Rock was October 11, 2005. It was an overwhelming array of tests over a five day period, including bone marrow biopsy, gene array, MRI, PET scan, 24 hr urine, echocardiogram, pulmonary function test, skeletal X-rays, bone scan, bone density, EKG and more blood tests than you could imagine! Tuesday the following week, we met with our assigned physician, who reviewed the results and discussed the major research study we qualified for. Don's tumor growth had been aggressive and we were both a bit alarmed. About 30 minutes later, Dr. VanRhee came in to talk with us about the vaccine study he was doing. Don was the perfect (bad) genetic type for this study. The protocol offered the same benefits of chemotherapy and tandem autologous stem cell transplants, but added regular injections of a peptide vaccine that would be created from Don's white cells. The assumption is that the combination of vaccine and stem cell transplant would help to reboot Don's natural immunity to the myeloma cells.

We carefully considered the decision to participate in this study. All of the treatment would need to be done on an outpatient basis in Little Rock. We would be away from home for at least a month three different times during the year. I would be unable to continue to work. And, of course, there were the usual concerns over the logistics of such an undertaking. Both of us worked for medical groups without benefit of paid time off. Don's disability plan wouldn't begin until at least 90 days after needing long term care, etc. The study was sound and Dr. Van Rhee's credibility as a clinician and researcher was unquestionable. When Don asked him when he needed to start, Dr Van Rhee asked him what he was doing the next day. Don replied that he was scheduled to work. Dr. Van Rhee looked at him and said "This is serious sh#!! man!" We immediately knew that this would be someone we could work with.

The next step was to get insurance approval (again!). There were several glitches in communication with the institute, but eventually we arranged to start November 14th, or so we thought. The institute was moving to a new clinical office the weekend before we were to come and our schedule wasn't confirmed. We went to Little Rock and tried to get information, only to discover that all of the tests done in October needed to be repeated before he began the protocol.