An Update Because It's Been A While

Well, it's been a while, so I figured it's about time for an update. Things have been fine for me. There's nothing of tremendous interest going on, really. When I had my last visit to the clinic (on April 17th), my bloodwork looked fine, so I was told I didn't have to come in again until next Tuesday, May 7th, when we'll be doing our "work-up" day for the second transplant. So last week and this week, I'm just going in to the infusion center in the Cancer wing at Intermountain Medical Center (IMC) so they can change the dressing covering the central line in my chest. It's nice to not have to go in to the BMT clinic at LDSH, because IMC is just 5 minutes away.

The work-up day is about making sure we establish a sort of base line for my upcoming hospital stay. They'll check a lot of things and I'll be there most of the day. At 8:45, I show up for a skeletal survey and chest x-ray. The chest x-ray is to check for things like pneumonia, which I've had twice since my cancer diagnosis last fall. The purpose of the skeletal survey is to determine the current state of my bones. Multiple Myeloma produces lesions in the bones. In my case, at least in October, many of my bones looked like swiss cheese when I saw the images from the bone survey I did then. Since October, I've been receiving a bone strengthening drug called Zometa every four weeks or so. We'll see if there's any difference in how my bones look now compared with how they looked 6 1/2 months ago. After that, we'll do an EKG and an ECHO. The EKG (electrocardiogram) measures the electrical efficiency of the heart, i.e. whether the heart's electrical pattern is too fast, too slow, erratic or normal. The ECHO (echocardiogram) is an ultrasound of the heart. It measures the size and shape of the heart, the size of the valves and chambers, how well the valves are functioning, how the two sides communicate, and the rate at which the blood flows through and out of the heart. After that, I'll have blood drawn for multiple tests and THEN, my FAVORITE PROCEDURE EVER...a bone marrow biopsy. Yippee. Though my first biopsy taught me empathy for women who go through childbirth and people who break a femur, my second one was bearable, thanks to Steve, the PA who performed my it. I've requested that he do this one, as well. My day will end with a couple pulmonary function tests, where we get to see how my lungs are doing. And that's my work-up day. I'll probably be leaving the hospital around 4:00 or 4:30. It's a long day of getting poked, prodded and scoped, but it has to be done.

I also have an appointment with a doctor who is a Gastro-Intestinal specialist tomorrow (Friday) at 2:30. My Care Coordinator scheduled it for me to check on the system that gave me such a problem with the in-hospital recovery from my first transplant.

I've decided to throw a kind of birthday party for myself this year. Well, not really a party, but if it goes the way I hope, it will be the best "party" I've ever had. I want to get at least 100 of my friends and family added to the National Marrow Donor Registry on the weekend of my birthday, June 28th. My family (my parents and their posterity) will be having a family reunion that weekend, beginning on Thursday, June 27th and running through Sunday (I think). The reunion is here in Taylorsville, seeing as David, Jeff and I all live here. Adults in my family will give this Registry "drive" a good head start. Beyond that, I'm counting on a lot of my friends and neighbors coming through for me. I've put together an Event page on Facebook, and sent out a couple emails. I'm hoping that family and friends around the country will help spread the word. I don't care so much if someone's here for the event or if they get the donor kit wherever they live and send it in. If I can instill in 100 other people a sense of the tremendous need there is for more donors to join the registry and to see them act on that understanding, that will be the best gift I could imagine. There's such a need for donors. As I put it in a couple emails and on the event page, "there are tens of thousands like me every year...people who depend on the Registry being able to find a stem cell or bone marrow donor who is a match for their own marrow - someone who represents a chance at life. The fact of the matter for me and the thousands like me is that if a donor is not found, we will die. Our cancer becomes a death sentence. I am one of the lucky ones...I had 27 potential matches in the Registry, and one of them is a perfect match. It breaks my heart to learn regularly of others like me with blood cancers who have NO MATCH IN THE REGISTRY. I'm just trying to do my part in helping those people whose life depends on more people being added to the Registry and waiting in the wings to become someone's hero." I hope enough people get it so I can reach or exceed my goal of 100 new people on the Registry for my birthday.