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!

Heading Toward Health

We had a bit of a mixup, or rather the BMT clinic had a mixup on our appointments, so we ended up going in for the checkup on Friday, not Thursday.  Going in, I have had no significant fevers, vomiting, or other complications or problems.  Patricia is very good at making sure I get out and do some exercise every day which is good for me.  Wednesday was the first day I went for an entire day without a major nap since I went into the hospital.  I did this again yesterday but it was mostly because I could not lay down until it was bed time anyway!  I still need a nap most days, but that is down from 2 a day to 1 a day.  Energy level is slowly coming up -- my sense of humor is coming back.....at least I think it is.

On April 2nd, my Hematocrit (proportion of my blood that consists of red blood cells) was 34% of my cells; yesterday it was 37%.  The bottom end of normal is 41%.  So, still anemic, but moving forward and getting close to normal.  Keep in mind that I have been anemic probably for over a year, so this is a good sign.  4/2 my platelets were at 105 (these help me to stop bleeding), yesterday they were at 155 which falls within the low end of normal range.  On 4/2 my neutrophil count had dropped down to 1.7 after the neupogen wore off; yesterday it was back up to 4.3!!  These are cells that help to develop into the infection fighting parts of the immune system, so this is great.  This is in the middle of the normal range.  Hopefully those will stabilize.

All of that was fantastic news.  My immune system continues to grow and improve, getting me to within the normal range; I haven't seen scores the normal range for some of these counts for probably 6 months or so.  We don't have a current read on the cancer indicators, but we'll get that in a couple of months, maybe earlier.  I also have an appointment now scheduled with my regular oncologist for the end of April.  At that time, I will "officially" become his patient again instead of the BMT's patient.

Doctor Peterson indicated that in their opinion, I had done fantastically well with the transplant, and my results were looking really good.  The next decision we are facing (there seems to always be another decision looming) is whether to do consolidation treatment and/or maintenance treatment.  I have been reading about this, but Dr. Peterson also shared his own ideas about this.  The key thing that is hanging the field up is this:  studies have shown that those who DO go on consolidation and/or maintenance treatment (taking lower doses of chemotherapy after transplant) have a longer period in remission.  However, the same studies also do not show what they call an Overall Survival benefit, meaning even if they were longer in remission, they did not live longer as a group than did those who did not go on maintenance.  He explained that this is partly because they think that going on remission enables the cancer to eventually become resistant to the chemotherapy so that when you relapse, it is more difficult to treat.  So maintenance can give you longer remission, but you are still going through chemo (lower doses, yes), the drugs can actually inhibit your immune system's production of some of the key infection and disease fighting white blood cells, and it more than doubles your risk for developing "secondary cancers", other types of cancers or illnesses.  Lovely, eh?

He thinks that we are in the middle of significant progress and that the next 5-10 years will show even more remarkable results, possibly even a cure.  The goal right now is to make Myeloma a chronic disease that is treatable and not fatal.  So if the transplant can give me 2 years (median) remission, we are that much closer to progress being made and new drugs being available.  However, I suspect, I hope, I will get more, maybe much more, than 2 years since the group that median (or average) is based on includes those with highly aggressive genetics in their myeloma.  Dr. Peterson also described a small group of patients he had personally treated who have been in remission after transplant for 20+ years -- some show signs of the cancer, but it appears to be "paralyzed" - it is not growing or progressing, but has just been sitting there for years.  Of course, the chances are I will not be in that group, but we can hope!  Here's a story to help you understand something of statistics:
A biologist, a chemist, and a statistician went hunting.  They spotted a large buck in the woods.  The Biologist took aim and fired but missed by 6 inches to the left; trying to compensate, the chemist fired  and missed the buck by 6 inches to the right.  The statistician pumped his arms up and down and shouted "We got him!".  

Last news:  here is a photo that is great to see.  The marks on my head are from wearing my hat a lot yesterday, but look at my chest!

No Trifusion Catheter!  I am free at last!  It was there only about 5 weeks, but given the trauma of the first days it was put in (go back and read early blog posts), it is such a relief to have it out.  This was also a potentially high infection path, so that gives me some additional protection.  I am learning to try and move more freely again and will enjoy having some scars to show people and tell them the story of how Patricia attacked me with an ice pick.

So that is the latest.  Thank you all for your love and support.

I can do anything for 10 seconds

So, the latest is somewhat more boring compared with previous posts.  We are heading again to see the BMT tomorrow, to get another blood workup and probably to get my trifusion line removed from my chest.  It will be a pleasure to have this thing gone.  I'll update you all on the results of our visit  once we know them.

It has been a tremendous relief not to be in the hospital, and to be home with actual, comfortable furniture, my wife beside me, and a chance to be around familiar things.  My appetite has mostly returned, although I could not eat a frozen pizza we had cooked because it tasted like vinegar to me!  So, I guess there is still some adjusting going on there.  We gave the pizza to a neighbor, and her kids loved it, so it was me, not the pizza.

If you haven't seen it, I would encourage anyone reading this to take a look at the tremendous documentary by Ken Burns that aired on PBS recently based on the book Cancer:  The Emperor of All Maladies by Siddhartha Mukherjee (he is amazing as well, and I'm sure this book is just stupendous).  It goes over the history of cancer as well as how our understanding (or lack of it) has been tied to the treatments we have used over the years.  It ends by helping us get a glimpse at how complex cancer really is and helping us understand that this is part of the reason it has taken so long to get where we are today.  That said, the progress we have made in the past decade or more is truly amazing.  Although there is no "cure" for most forms of cancer, including Multiple Myeloma, one of the goals right now is to turn the disease from a fatal one into a chronic illness like diabetes or heart disease.  I think we are within striking distance of that goal, and who knows what the future will bring?

To see the film (it is in three parts), go here:
http://video.pbs.org/video/2365450686/

This is the first episode, called "Magic Bullets".  The second is called "The Blind Men and the Elephant", and the last is called "Finding the Achilles heel".

Now to the title of this particular post.  While I was in the hospital, Patricia and I watched the pilot and second episode of a new TV series (we haven't watched it since) called Unbreakable Kimmy Schmidt.  One thing we got out of the show was a mantra she was using to get through difficult things:  I can do anything for 10 seconds (and then repeat.....).  So, Patricia wrote this on the wardrobe panel in my hospital room.  We expanded the 10 seconds to 10 days, but you get the picture.  I kept track of each day I had completed, and it helped me think about how I was making it through my time there.  Here is a picture of the panel:

Sometimes, persistence or endurance means just this -- gritting your teeth and counting to 10.  It is a little harder when it is 10 days, but it still works!  

So, I am grateful for being able to count to 10 twice.  I'm grateful for the advances humanity has made in fighting this terrible Emperor -- I will still benefit for years to come from these advances.  The dedication and perseverance of those working in this field is inspiring.  I am grateful to all of you for your ongoing support and help - trying to do this on my own would be much, much harder.  Hopefully, tomorrow we will have more good news, and I will return home with a healing hole in my chest, but no more tube.  I'll let you know!