Ten months and counting

I'm going to make a new year's resolution to try and update my blog a little more frequently, at least once monthly just so you don't all have to wait to see what is going on.

There is some good news to report.  I am now 9 days past my 10th month anniversary since I was discharged from LDS Hospital. That's 10 months off of chemo, 10 months of trying to get back into the swing of things, 10 months more with family and friends. I am grateful for each day of it.

My "anniversary" of my discharge is March 29th, the day before the conference I am organizing at UVU!  That will be an interesting week.  My "birthday", a year old for my new immune system is March 12, so maybe I need to have a party or something?  :)

The only drawback to these festivities is that I will have to start my vaccinations all over again -- that is a major milestone, so I'll accept it, but secretly I'll whisper that I'm not really looking forward to it!

So, overall things have been going fairly well.  I've been working. My department has been fantastic as always -- I'm teaching online and doing some administrative work. I have discovered that while I enjoy teaching online, it is not as vibrant or exciting as teaching with the students right there.  However, it also protects from infection and having done one substitute class late last semester, it takes much less energy, which I'm grateful for.

I am also finishing up my book. Yes, I'm writing my second book (first one was on depression) -- it is about understanding and working with student resistance to active learning. We are in the last stages!  I'm excited to get this done. We had originally agreed to have this done by December 2014 but cancer made a hash of that. But I've been able to work on it, especially in the past 4 months. So, this has been a useful and productive 10 months, overall.

Now to the update -- my last blood tests were a little worrisome -- uptick in my M-spike to 0.7.  It has been hovering around 0.5 - 0.6; however, it has been that high once before since I came out. The doctor said it was not enough data to make a change in our current strategy.  So whew!  My blood counts are also still low.  Arrrrgh.  My white counts has sometimes gone up into the bottom of the normal range, but this time they are down again. My red counts are also still low, below normal, but not too far. It's those silly platelets, too!  They have hardly moved since I left the hospital. At least I have enough of them that the doctor said Patricia could stab me, and I would not bleed out right away, but I wish they were higher.

So my existential angst is a bit calmer right now, although that M-spike made me just a bit anxious. I finally started on Zometa after months of debating and trying to decide. It was NOT fun. I had flu-like symptoms and pain for 4-5 days including fevers of up to 102. The doctor wasn't certain if the fevers were due to the drug or to a viral infection that then affected me for the following 2-3 weeks in January.  That was a drag.  I've looked at the online message forums for Multiple Myeloma, and the suggestions included extending the time of the infusion and staying hydrated; the doctor had no problem with this, and so we are going to try it later this week. I also have read that at least for many  people, the first time is the worst.  I hope all of these things are true.  We delayed my treatment until the end of this week so that I can get the book done and can lose the weekend if I need to.

So, hanging in there. Not recovering as well as I had hoped. Dr. W talked about it as a "slow recovery", but I'm working, enjoying each day as much as I can, and my book will soon be done! We were also able to do a bit of traveling in November and go see our son in San Francisco. I'm grateful for all of this time I've had, and I hope for even more. Thanks for reading!

The Other Side of the Tunnel

Boy, looking at the date, it has really been a while since I have posted.  Sorry about that, everyone. In case I don't get back to this real soon, Merry Christmas!

Before I get into my musings, let me update everyone:

• No significant change in my cancer readings -- hooray!  It moves slightly up and down, but it is holding remarkably steady. It is like there is a stalemate going on in the battle between my immune system and the cancer (like the trenches in WWI?). Whatever it is, I'll take it. 
• Because of the stalemate, I am chemo free. My department chair and I were trying to come up with words to a Christmas song, something like:  "I'm not getting chemo for Christmas!  Mommy and Daddy are glad.  I'm not getting chemo for Christmas. 'Cause Christmas is no  time to be sad."  Ok, it is a work in progress!  But that is a real blessing.
• My blood results are still not that great. My neutrophils, the ones that fight bacterial infections, have sometimes been up past the border in the bottom range of normal, but most of the others are hovering not too far below the bottom end of the normal range. The good news is that while they are low, they are not terribly low (as in need transfusions low). The doctor still calls me "immuno-compromised", but he said my wife could probably stab me, and I would not bleed out, so that is something!  Because of this and getting sick twice in the past few weeks, I decided I have to keep my mask on at church and in many of my meetings on campus and be more cautious.  Here is a picture from Wikipedia of Neutrophils: 

• I feel a LOT better than I did after my transplant (8+ months ago) in terms of my energy levels, ability to concentrate, etc.  However, my energy levels are still low.  Yesterday, we went out to dinner for our anniversary and then to the mall to look for some stocking stuffers. We left there and came home about 8 pm. I was pretty much wasted, and I should have told my wife I needed to leave earlier. It is hard to do that, and sometimes I am burning reserves and don't know it until I "hit the wall".  So, I am still walking, I've been working, etc. all of which is a big improvement. I'd like to think I can keep getting better, but it has been 8 1/2 months.  We'll see.  
• We got to do some of our bucket list!  Because I am teaching online, I was able to stay in touch with students and manage my classes from a distance. We went out to California to see my son  Ben and his fiancée, Sonal. We enjoyed that and went with them to see Yosemite National Park. UH-mazing. I really enjoyed it and being with family. I stayed for a conference there in San Francisco. Two weeks later, my wife and I flew out to Denver to see her family because of a true miracle event: a funeral of her uncle Roger Nielson who died at the age of 22 in World War II at Tarawa. If you don't know much about Tarawa, it was one of the bloodiest battles of the Pacific Theatre in the war. Decades ago, Patricia's grandmother had received word first that her son was missing and then that he was presumed dead. However, she was later informed that they could not locate the body. That was the way it stayed for a long time; my wife thought he had been killed trying to get on the beach and his body was lost at sea. However, just over a decade ago, an event occurred that ultimately led to History Flight (a non-profit now working with the State Department and the military) discovering the remains of her Uncle Roger and 34 other US Marines who were killed at Tarawa. His DNA was matched to her surviving Uncle Cory, and he was brought home to Denver to be buried at Ft. Logan Cemetery.  It was quite touching, and we all feel very grateful to History Flight for the work they are doing. 
• Unfortunately, we have not yet had a chance to take down a terrorist.  We are working on the other bucket list items.  
• Our sons are doing very well. Ben is working hard at his law firm in California and Wesley is really enjoying his time in his MFA program in Florida. He will be working right up until Christmas, so we won't get to see him here, but we are thinking of flying out there in the not distant future. Ben and Sonal will be getting married in July, so we are planning to be there. Hopefully, I will STILL not be on chemo and can enjoy the celebration. 

That's the latest!  Now on the musings -- click away if you don't want to hear them!  Last chance!.......

Last time I wrote about the uncertainty that comes with cancer and the anxiety that goes with it. We have had several real blessings in our life recently that have enabled us to pay off our house which has really reduced some of that significantly: I know that we have a place to live no matter what happens. The apparent stability of the cancer right now has been another blessing in that regard - it gives us a window of time to enjoy life and do some of the things I've mentioned above.  But that uncertainty is not gone, although it is reduced.  I was thinking yesterday that it is like stumbling down a long very dark tunnel with a flashlight whose batteries are running out - you can only see a little ways ahead and sometimes even that is murky.  

My metaphor here may become strained, but to me, every tunnel also has another side where the light is still shining. For me, I have been thinking that gratitude is part of what helps me keep walking; I am grateful for the time I have had on the earth, for this chance to be with family and my wife, for this Christmas that I can have to enjoy without chemotherapy. I am very grateful to my doctor who found the cancer early and has given me this time - my wife and I were speculating on where we would be now if he had not found it. (Shudder). I am grateful to my oncologist who listens to us, who is truly concerned for not only my well being, but our quality of life. I am grateful to all of you for your support and expressions of love and prayers. Most of all, I am grateful for my wife who has been staunch and unflagging and at times irritatingly optimistic about everything going on and whom I love dearly, and for God who watches over me. In many ways, I think that gratitude is the conduit, at least for me, that strengthens my faith and that brings the hope that helps to balance that uncertainty. 

Until next time!  

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.

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 I......rest 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.

The Disappointment

In my last blog post, I described how we were waiting to get the results of more recent labs and to meet with the Bone Marrow Team up in SLC.  Well, we did both.  Two weeks ago today, we met with the BMT  my (very late) 100 day checkup.

Doctor Ash did not try to beat around the bush.  She started out by saying that she had some bad news.  Just the day before I had seen the latest posting online of my Provo lab results, but I was hoping there was a mistake or perhaps I was not understanding the context.  That's not what she said.

So, to give you all some context. The M-spike is a lab result that shows the level of abnormal (cancerous) protein in the blood.  Normal people's score is 0, none.  I was diagnosed when it was 1.7 (fairly low compared to some other people we've spoken to).  After my rounds of chemotherapy, it dropped (good news), and it was 0.2 just before my stem cell transplant.  The most recent results available at the time we met the BMT was 0.6.  This means that the cancer is back and growing.
All I could think was:

Patricia told me after the meeting that she wanted to slap the doctor across the face and tell her, "Stop talking!"  It was a difficult thing to hear.  The lab result that shows the presence of other proteins that can damage the kidneys were also way higher than normal. She said that the team believed that my cancer was "refractory", meaning unresponsive, to the chemotherapy that was used in the hospital.  In other words, I went through that, and it did succeed in killing my immune system, but it didn't kill the cancer.  Again, I thought:

So we've had a hard couple of weeks adapting to the news.  We met with our oncologist yesterday.  He was also a bit disheartened.  We discussed options including the possibility of a donor stem cell transplant; this is a fairly effective treatment for some other conditions (such as Non-Hodgkins Lymphoma), but he said he would not recommend it for Multiple Myeloma -- too risky with mortality rates around 20-30% and the evidence is not clear that the gains for many are worth the risk.  Some people have done well with it, but that is apparently not the norm.  We discussed participating in a clinical trial with some of the new treatments that are coming out and resuming chemotherapy at home, with new, updated drugs.  We are taking a month to do some research then we'll meet and decide what to do.  

So -- thank you for your prayers and support.  Please keep them coming.  We'll post more when we know what we are doing. There are some new treatments and opportunities.  I hope to be bothering all of you for some time yet.  

The milestone

Yesterday, Saturday marked day 98 from my leaving the hospital after my transplant, if I am counting correctly!  When we were at the hospital, they told us we would have a last meeting marking day 100, or the milestone for when they no longer would have any input on our case and it would all be back to  our oncologist.

We got a phone call from Dr. Wallentine's (the hematologist/oncologist) office saying that the hospital had called, and we needed to get all the lab work done so they can review it.  So this means going through the list of things again including lots of blood work and labs, a 24-hour urine sample, and my favorite -- the bone marrow biopsy (love that procedure).  Some of the labs take time, as does the biopsy because the pathologist has to do it to count the number of cancer cells.  So this week will probably be fairly busy taking care of this type of stuff.  Then LDS Hospital will review all of it and make some recommendations to Dr. Wallentine.  Apparently, they are saying that we don't need to drive up there for a meeting which seems both good and bad.

Good because that is a long drive with traffic and wipes out much of a day.  Bad because we won't have as much of a chance to say good-bye and to hear their recommendations directly.  Patricia and I are talking about whether we want to request a final meeting.

People are telling me I am looking good, that my color is better, etc.  I am thankful for that and grateful that I am able to get out and ride my bike and pull a few weeds (with gloves and a mask on). I'm accelerating work on my fall courses and my book, and working part-time at home and at school. So things are better than they have been for months.

But as I told someone yesterday, "Cancer has a way of making one cautious."  Yes, I really do hope that I am doing better.  I am looking forward to continued months of no chemotherapy as we monitor the cancer and make sure it is quiet.  At the same time, part of my brain is hiding in the dark closet shouting "Be careful! Things are dangerous out there!"  Maybe this is part of the shock of diagnosis still lingering, I don't know.

What I do know is that life is precious.  Family is precious.  We are given wonderful blessings in this world to serve others, to know love and joy, to learn, and to face our fears; we have the chance to come to know God in his mercy and kindness during the worst moments we face....and He is there.  And so are all of you -- thank you again for your ongoing support and kindnesses.

Let's see what the week brings.

56 Days and Counting

Boy, I know I have been meaning to update my blog, but I didn't realize so much time has gone by.  Today is my 57th day since I left the hospital.  We are more than halfway to the "milestone" 100 day checkup when we'll go back up to SLC for a final visit with the Transplant Unit.  In the meantime, I'm back to working with my local oncologist.  Some of you have still been sending me a joke of the day which I appreciate!  :)

As of about a month ago, my white blood cells were staying in normal range -- yes!  My red blood cells and platelets were below normal, but not by too much, so that is looking pretty good.  We still won't know about how the cancer is doing until we do a checkup in about 6-7 more weeks.

Overall, things are going pretty well:  No naps, walking around 2.5 - 3 miles, five times a week, and working part-time from home.  I'm making progress on my major projects (designing my online Abnormal Psych course and working on my book), and I can go to the store etc. either when they aren't busy or with a mask.  I'm going to ask the doctor about masks when I go to visit again this week.  I still can't get in the dirt; my wife, bless her, is doing the outside work this spring and summer from planting, moving compost, etc.

Speaking of projects -- I am trying to build wooden tomato cages for my wife to put in the garden.  Since I suppose wood does not have loads of bacteria or mold in it, I can work with it, but I am doing this in the garage with my mask on.  Loads of fun!  Both this project and the walking, though, have taught me something.  With exceptions, I feel like I am trying to resume a "normal" life; however, the swelling of my feet and ankles, my tiredness the next day, and ongoing aches and pains tells me that I think that I am more ready for things than sometimes I am.  At least I think that is what they are telling me.  I feel pretty good, so I assume I can do normal things, but I am finding out that I am not quite back to normal yet.  I think it will come, but I've had to cut back on some of the walking (not quite as far) and trying to get some rest in, and I may not be able to cut as much lumber in a day as I thought I would.

I think it is an ongoing issue of adjustment.  But that is what all of life is, right?  We all have to adjust to the things that come our way and learn how to interact the best way we know how.  Thank you again for your love and support.  As my friend Buzz likes to say:  To Infinity and Beyond!