Under Way with Transplant #2

So I'm here in the hospital, room East 811, and wishing I had a room with a better view...i.e. ANY view. Other than that, though, things are pretty good.

In my last post, I listed the things I wanted to do with my last week out of the hospital. I'm pretty happy to report that I accomplished most of it. Noelle and I went to the Tracy Aviary in Liberty Park downtown. We went to lunch at the Market Street Grill. I went to the temple with Abby to do baptisms for the dead. The next morning, Noelle and I went to all-you-can-eat french toast at Kneaders Bakery and then to the temple to do some ordinance work. I went with my brother David to get tile for our new shower. I was treated to a round of golf by Dr. Jim Smith, my old collegiate choir director and voice teacher from BYUH. Not only did we have a great time, I also shot my best score ever on a Par 72 course.

Unfortunately, our plans to go to Arches National Park on Friday were botched, so I went out that morning and played an other round of golf. I didn't score nearly as well on that round. Noelle and I went to a Salt Lake Bees game and dessert with David, Brook, Jeff and Rachelle.

Our family spent some good time playing some games together at home, and on this Monday morning, I took the kids to Kneaders for breakfast before school. Noelle suggested that to me on Sunday, as I would be entering the hospital Monday afternoon. I liked the suggestion, and the kids and I had a good time and enjoyed the delicious food.

The first few days here in the hospital have been OK. Chemotherapy has begun, but gratefully my neutrophil counts are still good enough that Noelle and I have been able to get outside for a walk or two each day. I was going to participate in a study with some test medication (or a placebo) to prevent people in my position from contracting c-diff, but as it turns out, I have contracted it early and won't be participating in the study. I feel fine, though, and don't have the horrible constant diarrhea that tends to go along with it. Chemo is given VERY early in the morning, and tends to make me pretty sleepy during the day. There are two more days of it, and then two "rest days" on Monday and Tuesday of next week. Finally, on Wednesday, the 29th, I will receive the stem cells from my donor that may save my life in a very literal sense. After that, we just wait for the stem cells to engraft and start producing blood cells.

That's about all for now. I'm not in pain, and I'm just taking it easy. I miss my kids, though. Tonight, when I talked with each of them on the phone, I asked them to draw me some pictures to put up on the walls of my hospital room. They each agreed to do so, so by Sunday afternoon, I should have some nicely decorated walls that help me feel closer to my kids.

Someone asked me recently...

Someone asked me recently what color ribbon represents awareness for my kind of cancer. I was embarrassed that I didn't know. Now I do. It's burgundy, which was one of my and Noelle's wedding colors, ironically enough. So, If you'd like to wear a ribbon for Multiple Myeloma awareness (there's no specific color for my version of MM, Plasma Cell Leukemia), then please do. I think I'm going to order pins for Noelle and myself.

One Week to Go, and I'm Gonna Make the Most of It!

In one week, I'll be admitted to LDS Hospital for my allogeneic stem cell transplant. Over the first several days following, I will be receiving a round of very high-dose chemotherapy medications that will wipe out my white blood cells and all of my bone marrow. Through and following that chemotherapy and for the following couple weeks, I'll feel like death just barely warmed over. It will take a couple weeks for my donor's stem cells to engraft and begin to generate new blood cells. With no white blood cells and levels of red blood cells and platelets diminishing daily, my energy levels will be very, very low, and Noelle will have to work hard to get me out of my bed and go for little walks around East 8. BUT...

In the mean time, I feel absolutely great. My energy levels are good, and I have a week before I need to be concerned with what's coming, so I'm gonna make the most of the week I have. What shall I do?

I'm going to play at least one round of golf. I don't have much money, and I need to have a golf cart to preserve my energy levels, so I can only afford Fore Lakes Golf Course, at about $10 a round, as I recall.

I'm going to drive my family down to Arches National Park and see the really famous arch that's on Utah auto licence plates. My kids don't know this, so please don't say anything to them.

I'm going to go see a baseball game. I wish I could see a San Francisco Giants game, but the Salt Lake Bees will have to do.

I'm going to enjoy all-you-can-eat french toast at Kneaders Bakery and Cafe with Noelle.

I'm going to spend (or waste?) some time playing some games on the XBox 360 that I earned at work last December. Since installing it shortly after Christmas, I think I've spent a total of about 30 minutes on it. I hear it's a blast. I should really find out for myself.

What else am I going to do? Aside from a couple things I have to take care of for Noelle, that's about all I have planned. I have no idea what else I should do. I'll take a walk every day. I may go out and play another round of disc golf. I played for the first time on Saturday evening with my brothers David and Jeff. Noelle suggested we could go to the Tracy Aviary. She's been with the kids a couple times, but I've never been and we have free tickets. I don't know what else, though. Perhaps I'll solicit some ideas from others who have lived in the Salt Lake Valley longer than I have. I just know I don't want to sit around doing nothing this week. I'll have plenty of time to do nothing over the course of the four to six weeks I'm in the hospital for my transplant. But until then...

I'm gonna make the most of my time and energy! I just need to come up with more to do!

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.