Searching for the Balance

 

Welcome back, friends and family! It has been about 15 months since my last update. 

In searching for a theme, I settled on the idea of how I continue to try and find some way to balance my life as things continue to progress over time. Let me start with some good news.  

In March, I had my 7th birthday, celebrating my triumphant return home from the hospital seven years ago having defeated cancer!  Wait...hmmmm. Maybe it wasn't quite like that, but I am still alive after seven years following my transplant, so that IS good news, right? I am still working, we are enjoying redoing our entire yard right now to reduce water use and change its look, and we just found out that we have a new grand baby who will be joining us in several months. I also finished my sabbatical having accomplished a fair amount, although not all that I had wanted to, and me and my loving wife are still together after 37 years. These are all awesome, and I am grateful for all of them. 

So what's the latest? 

Well, not as good as I had hoped. My latest blood draw, from the start of May, showed an M-spike of 1.2; this is the highest since I was diagnosed which was 1.7. After my transplant (2015), my M-spike was 0.3, so I have moved a bit up and am getting closer to when I was diagnosed. On the other hand, my annual MRI in early January did not show any major tumors yet. Wahoo!  

On the other hand....my white blood cells counts in November and in May were both the lowest they have been in years, my red blood cell counts were stable between November and May, but also the lowest they have been since 2019 (that's as far back as I can easily see on my tracker right now); the bottom of normal is 4.7 and my counts were 3.86, and my average since my transplant is 4.14 over the years. So, my ability to fight off infections is less than it has been, and my anemia is worse than it's been for a long time. Maybe this will help:  

Lab                    7 year average            Bottom of "normal"                Me in May, 2022

M-spike                    .84                                    0.0                                            1.2

White cells             3.06                                    4.3                                            2.16

Red cells                4.14                                    4.7                                            3.86

In my last blog, I also noted that we have been watching my light chains from my kidneys. Well, those haven't looked that good, either. Focusing mostly on the ratio because that is what the doctors say is the most important indicator, my last two chain labs show 1.79 ratio or above; the top of normal is 1.65.  So we are going to keep watching it. 

Here's the other thing: I can feel it. I am more tired than I have been in a long time. I am having, as a result, more difficulty concentrating especially as the day goes on. This is with 7.5 - 8.5 hours of sleep a night. My back hurts more than it has in a while, and I am having more "side" problems than I have in years. 

I made a big decision recently -- while I love, love mentoring students in research and helping them develop the powerful skills that will help them in their futures, I don't think I can do it anymore. I took on one more student this summer (just one) and will no longer be mentoring students after I finish with the projects I have going on right now. I will still do scholarly work -- but more as a consultant, editor, and not as the person leading the project. I have also gone to my department chair and dean and asked for support with a student Instructional Assistant every semester and possibly reducing my work load a bit (this is still being evaluated on the basis of health accommodations). 

I am very grateful for my life, my Savior, grateful to my wife, grateful for my seven years and hopefully more to come, grateful to my department and colleagues and UVU for their support. I could not do what I am doing without all of that support. But it was time to step back, acknowledge my body and how I'm feeling, and to shift towards those things I can still do well and get done. I don't necessarily believe right now that it will get better, although in my 7 year wait, there are SO many more options once I do have to go back on meds -- and I am grateful for that, too, and for my doctors who track and watch my health. This is my search for balance -- to find a place where I can try to get the support I need to carry on and continue to contribute to the world while acknowledging the reality of my situation. 

As the British government said in its poster before WWII:  Keep calm and carry on!  And thank you to all of you reading this -- I love you and am grateful for your support as well!  I hope to give you a next update a little closer in time to this one.   Wish me luck!