Sunday, September 27, 2015

Through a Glass Darkly

I was musing the past couple of days that I am hard upon a six-month anniversary of my stem cell transplant.  I have been out now for all that time -- a really good thing!  I have not had to return to the hospital and although I have had periods where I did not feel well due to small colds and such (that lasted much longer than my wife's!), but overall I have felt pretty good. I am trying hard to stay healthy, to take my protective medications and wear my mask in large gatherings, to exercise, etc.  Further, I have been able to work although not at the pace that I used to.  I have been blessed with this extra time.

Yet, this is also the curse. I have discovered that the clock never stops ticking in my head. My wife and I have committed to spending some of our time to work on our "bucket list", including a short visit to Yosemite and a visit with our oldest son if possible at the end of October ahead of a conference I am planning to go to, as well as some other side trips. These moments are precious and valuable....but I have no idea how I will feel. Will I be on chemo? Will I not? (hopefully!) When will I start bone treatments to strengthen my bones? Is the cancer progressing?  How quickly?  The answers to any and all of these questions are agonizingly difficult to get. We hope to know in the next month, maybe two, if the cancer is stable and fluctuating around 0.5 but there is a chance it is slowly going up, and at some point we will need to take action again.

So this is a part of cancer, that I don't think gets talked about as much. The pain, the suffering, the drive to stay motivated, drawing closer to others and to God - those are fairly well known by most people. But the gnawing stress of uncertainty has never really gone away since my diagnosis. The anniversary of that event is also upon me or has just passed - I didn't really mark it on the calendar.  I started chemo in October last year, so I was diagnosed several weeks before that after all of the testing was done. It's not really an anniversary I want to celebrate, at least not at this point.  :)

Uncertainty or not, nothing is to be gained by sitting still. I have some time now, so I will love my wife, spend time with my friends and neighbors, and enjoy my time at my work. I thank my Heavenly Father for His love and support, and I thank all of you for your ongoing prayers and love. No matter what the future brings, or when it brings it, I want to know and feel good about the journey I have made.

Sunday, September 13, 2015

No News is Good News

Update 9/13/15   -- all odd numbers!

I have been meaning to post an update for a while now, but things get busy, so this blog contains two sets of musings.

The first is about my friend, Ian Sorensen. I initially met Ian, I think, as an Assistant Professor of Developmental Math when he came to work at UVU.  I was directing the Faculty Center for Teaching Excellence at the time, and so I was involved with the new faculty. Ian is the kind of person that comes across immediately as warm, caring, friendly, and thoughtful. We enjoyed our interactions, and I learned more about him including his years of service as a Naval aviator. He participated in many of our events, and we had many discussions about how to improve and enhance student learning. He told me that he was going to work on his doctorate, which I encouraged. He was also an LDS Bishop of his ward, a position I thought he was well suited for.

I bring this up because months ago when I was not at school and was in the middle of preparing and then going through the transplant, he called me or sent me an email. I don't fully remember the sequence of events or exactly what happened because my brain was muddled, and I was in the middle of all that stuff going on. In any case, Ian got in contact with me because he heard that I had cancer and that I was going through a stem cell transplant. He shared with me that he had recently been diagnosed with, I think, Acute Lymphoblastic Leukemia (ALL). I shared my sorrow that this terrible thing had happened to him. He had questions about transplant, the procedures, what I thought of the LDS Transplant Team (he was trying to decide between LDS and Huntsman for his transplant). I shared my thoughts with him, and we agreed to keep in touch. I don't remember exactly when he was going to go in for his transplant, but I'm sure it was after mine.

After I got out and started recovering and trying to get back into a more normal semblance of life, I realized I had not heard back from him. I sent him an email on June 30th asking him how things were going, but I never got a reply. I was concerned and was going to follow up when I was told at work that he has passed away on August 20th. He had gone in for a donor transplant; apparently the transplant did help with the Leukemia, but his Graft vs. Host disease really became virulent shortly after his transplant, and ultimately it took his life. Ian was two years younger than in Peace, Ian and may the Lord comfort your family.

Second set of musings:  His tragedy also made my wife and I more set against the possibility, at least at this point, of a donor transplant for me. As we have researched this option, it appears that for Myeloma, the success rate is unclear; many individuals go through the hell of that transplant and then instead of the donor cells totally killing the cancer, some of their own cells come back, and they live with mosaicism, meaning they have two genetic patterns in their bone marrow -- their own, and that of the donor. This creates an ongoing war of Graft vs. Host that can last for years, even a decade or more.  It can also prove fatal as was true for Ian. We have also looked over clinical trials for Myeloma running in SLC and for now have decide to wait on those. There is only one trial that I am still pondering slightly, but most of them are dosage trials, and I am not at the point where I think that would be helpful to me.

But, as my title for this blog suggests, not all is bad news.  We had our monthly appointment with Dr. Wallentine this past Friday. I had gone in earlier for my blood tests to try and make sure we had all of the data, but we were still missing the M-spike information - (grumble, grumble, grumble, ....laboratory....grumble). The results we did have to go over seem to indicate that the cancer is in a holding pattern; it is stable. At least it has been so for the past few months. There is no indication in the current tests that it is doing significant damage to me right at the moment. That is a real blessing. So we are going to continue to postpone chemotherapy for now. We are in "wait and see mode". Most of my blood counts are still low (white, red, hematocrit, platelets), although my neutrophils are in the low end of normal.  Wahoo!

So, because of persistent anemia, I'm still tired by early to late afternoon, still a bit weak, etc. but some of that is because I am still recovering from transplant. Also, please don't stab me with a knife or sword because my platelets are low!

We may start with Zometa, a medication that is often used with osteoporosis patients to strengthen my bones now while they are not being aggressively attacked, in the near future. We don't know how long this pause stage will last, but we are grateful for it. I am able to get work done and keep contributing, and that is a very valuable thing. I just wish I could eat sushi.......   :)

That's the latest.