Abnormally Stable?

That's what he said -- abnormally stable. This was during my last visit with our oncologist and reviewing the latest results (this was back on June 3rd). I asked if he could summarize where we were and how he would describe it. He paused for a fairly long time and that was his term.  We did have a good moment, though -- he paused again and looked at us and said, "It is beginning to look like maybe you guys were smarter than me on this."  He had recommended going back on chemo back in April or May of last year -- he was acknowledging that our decision to wait and not do that seemed to be paying off.  I love a humble oncologist!  In my experience, humble MDs are fairly rare, and I greatly appreciate him.

In some ways, I think it is apt. Sometimes, because I am out and about and not on chemo at the moment, people think I am in remission. "Abnormally stable" does not equal remission. Sometimes I call it "limbo" -- I am in between.  I am not in remission, but I am not progressing or deteriorating.  It is clearly still affecting me.  My results from May were somewhat encouraging in that some of my blood cell counts were up, and I was feeling a little bit better. That has slipped a bit in recent weeks, possibly because, yes, I have probably overdone it again.  :)  Possibly, I am incorrigible?

However, we either have a glitch now or the story is changing.   :(
Here's is an actual graph of my M-spike results from two years ago - July 23, 2014 - and July 27, 2016, so a two-year span:

The M-spike is the main measurement I worry about (my doctor worries about that and many others). The drop you can see above is when I began chemotherapy.  It lowered me from 1.9 to 0.5 going into transplant, then there is a flat line because we did not get any measurements for a while. You can see the "stability" in the measurements after we started looking at it again. What worries me:  look at the last 4 dots -- there is an upward trend: 2/26 - 0.60, 3/30 - 0.60, 6/02 - 0.6999, and now it just showed up:  7/27 - 0.80.  It has been at 0.7 before a couple of times and then dropped, but now it is the highest yet since transplant. Also, my free kappa chains have now crossed the line. Normal plasma cells take gamma globulin proteins and hook them together into long chains that cannot pass through the kidneys' filter and are therefore just immediately excreted. Myeloma cells, because they look like plasma cells but are NOT doing their jobs, don't do this connecting, so you get what are called "light chains" which are smaller, go through the kidney's filters and actually can start to damage the kidneys. This is a big thing they look for. Upper level of "normal" for these light chains is 19.4.  Here's my readings:  3/31 - 18.5, 5/27 - 18.56 (pretty stable), now 7/27 - 28.3  arrrrgh!  Together, these numbers suggest to me that the cancer may be starting to kick into gear......?

I don't technically have an appointment with my oncologist until September......but these numbers worry me.  I'll have to call the office tomorrow and speak with the care nurse.  I am hoping that we will see the wonderful effect of regression to the mean occur next month; those who passed statistics may remember that this means that if these are random fluctuations, the next number should drop down closer to the average.  I am just worried that this may not be the case. My other blood cell results this month also show ongoing suppression in my white cells, red blood cells, hemoglobin, and as always platelets (curse you platelets!!).  Anyway, that is my cancer update portion of our show.

Oh! I forgot to mention that part of the reason I may be tired is not only traveling and stuff going on in my bone marrow, but I got 5 immunizations shots last week and one this week (6 in 6 days) with BIG honking needles!
Yowch!  They did hurt, but I think they are important to trying to keep me from contracting something really nasty.

Now, for our segment called On the Other hand....
I was chemo-free for our son's wedding!  Our oldest son, Benjamin, who lives in CA got married on July 3rd to a wonderful woman named Sonal Mittal - she is smart, funny, warm, and caring. We went to Mission Viejo for the wedding that was performed in an outdoor venue by a Hindu priest. It was a fascinating ceremony, and her family was truly amazing. They were all loving, open, friendly, and welcoming of us. I now have family members in India, Germany, and many other parts of the country and the world. The day before the wedding, we had a rehearsal so that us westerners would know the purpose of the various parts of the ceremony and our roles, and so that we would be prepared. That evening Sonal's parents, Arun and Shubra, hosted a Sangeet at their home. I learned several things from this.  First, how warm and loving they were, and second -- Indians know how to party! The food was terrific and the dancing went on -- and almost EVERYONE danced from young to old. I did my best and participated and did a lot of clapping and stomping my feet!  The wedding itself was beautiful and the young folks danced enthusiastically into the night.  It was a joyous and wonderful celebration. Here's a taste of how it went:


Now for the "overdoing" it part:  we also spent some time at Laguna Beach, and played in the waves -- boy are they STRONG!  On the way home we stopped at Zions National Park. An item on our bucket list is to visit more national parks. This past year we have been to Yosemite and Zions. We took a hike up to Observation Point which nearly killed me coming down. I had a walking stick and Patricia was my other major walking support. It was gorgeous, exhausting, and stupid. But, here's what it looked like when we were about halfway up:
So -- cancer sucks, but life is beautiful. We had some wonderful experiences, and we welcomed a beautiful new daughter into our family whom we will cherish.

Thank you for reading. I'll let you know what the doctor says and what is coming next.

Hanging in There & Farewells

Sorry I didn't post an update in April.  It was a hectic/busy month with the end of the semester, finals, grading, and such. A few things have been going on, but mostly, I've been:
     Hanging in there!

At the end of March, we wrapped up the 8th Annual Scholarship of Teaching and Engagement conference (SoTE) at UVU. This conference was my idea, originally, and for years I had the support and wonderful assistance of the staff at the Faculty Center for Teaching Excellence (Ursula, Trevor, the SCOTs, and Joyce Oliphant).  However, this year because FCTE was subsumed into the new Office of Teaching and Learning, I didn't have the same infrastructure support. Richard Tafalla and Shelly Andrus and the folks over at the Office for Engaged Learning decided to support the conference this year, and we couldn't have done it without them, the work of the planning committee (especially my colleague Colleen Bye), and the help of the staff at the Office of Teaching and Learning.  At the same time, although the conference went well and we finished up well, it really took a toll on me. I realized or decided, perhaps, that I could not do this again. I am hoping that SoTE continues in some form, but I can no longer be the main organizer and planner for the event -- it is just not something I can afford to do.  So that was one sad farewell this year.

A second is related to it -- for the past two years, I have been working with Dr. Tafalla half-time in a capacity to support UVU's Title 3 grant. The work has been rewarding and has been focused on helping to get faculty on board to teach and involve students in undergraduate research in ways that improve their ability to succeed in college and graduate. But just as with SoTE, this spring semester, it became clear that I can no longer manage to juggle as many things as I used to -- I don't have the energy or ability to stay focused that long or put that much time into it. Richard began expressing concern over my health (I probably looked really stressed?) and telling me that I needed to start to reduce my commitments. It also became clear that I was struggling to keep up with work the way I used to do it, and I didn't want that to affect Title 3 or the work that needs to be done.  So, at the end of the semester, I have also bid farewell to that work.  I will still be involved with undergraduate research, and I still support Title 3 and the Office of Engaged Learning -- I just won't be as personally involved or leading that effort for faculty.

This means I am back to full-time teaching; I've already worked out with the department to teach online next semester and mentor some students in research.  I think that should lower my stress levels quite a bit. I'm still involved in a couple of other projects, but at a very different level.  So while I am looking forward to being more involved in my department and with my students in many ways, it is hard to take a step back from projects and efforts that I believe in and have spent much of my time and effort on. At the same time, I realize and am grateful that there are openings for others to bring in their ideas, their energy, and efforts to keep these things going. It is just a part of my life right now that I need to learn how to do this.

On the home front, since I am not teaching this summer, I have been enjoying more time with my wife, staying connected to our kids, and preparing for Ben's wedding in July. We will be welcoming a wonderful new daughter, Sonal, into the family and are very excited about that and our new in-laws, the Mittals. We have also been finishing the basement (almost done!) so there is a nice welcoming place for our kids (and one day grandkids) to visit and stay with us as well as other family and friends, so come on down!  We are hoping to take some short trips this summer -- out to the wedding and to see our folks in Albuquerque and Denver as well, and maybe stop to see some great things along the way.

I've also had some recent reminders that my wife is correct when she tries to protect me and help me to heal, and I should listen more to her. A couple of weeks ago, I went out and for the first time in over a year used the trimmer to trim the grass. It felt like quite an accomplishment, but it also felt like it almost killed me!  Death by lawn trimming?
I also tried to life the dresser our kids used when they were little to move it so the carpet people could get into the room and put down the carpet tomorrow, and I wrenched my back and hips. It was heavy, yes, but I couldn't even hold that thing up for more than 5 seconds.  Arrrrrgh!  Yes, I guess I am mortal, and yes, I had a stem cell transplant last year, and yes, my cancer came back, and is affecting me, although I am not dying right now -- but I couldn't even lift a stupid dresser! Anyway, rant over. I'm feeling a bit better today. I just need to pace myself; I just wish it wasn't slow.

I am continuing my Zometa treatments - they are not so bad now - and am working on nutrition, exercise, and some supplements to see if we can hold this beast off longer.  Wish me well in that effort! I know that we all have our moments when we need to bid farewell to things, even ideas, that we have been committed to, and move on - but doing it myself has been hard. But there is a lot of life still to enjoy, and I hope to do it with less stress.  Thank you for your love and support!

Birthdays and anniversaries

This has been a month of anniversaries. March 12th was the anniversary of the birth of my new immune system (or maybe my first second birthday???), and tomorrow (March 28) marks one year since I escaped the Bone Marrow Transplant Unit. I continue in what my doctor called a "very slow recovery."

Anniversaries and birthdays are usually times for reflection and thinking about our lives. Mostly, I am grateful.  I have been around another year since all of that trauma, and although I am not in remission, my cancer largely appears to be stable. I am grateful that I have been able to get through the school year this year without chemotherapy. I am grateful, still, for each day -- for the beauty of the mountains, for my wife by my side, for the chance to work with students and wonderful colleagues, and for the opportunity to see my sons doing so well.

At the same time, birthdays and anniversaries are times to think about what we could do better, or things we regret. I regret that I am not in remission. I get frustrated in realizing that this journey, while better than the alternative, is not a simple short sprint. I read an article recently on the Myeloma Beacon website that indicated that there is evidence that blood counts are only part of the story -- people with multiple myeloma tend to have chronic immunosuppression due to the cancer itself, the chemo, etc. In other words, it is time to gear up to this reality and just accept that it is going to be, well, ongoing.

I have struggled in the past several weeks with a cold and then some kind of sinus inflammation; I'm sure it is related to either a virus or allergies or both, but it was getting worse and affecting my energy and everything else. I am doing better now after sleeping sitting up for several night and resorting to nasal sprays to reduce my sinus inflammation. It is not gone, but it is better.  All of these things combined last week to make it a bad week -- back and hip pain was worse due to sleeping sitting up, sinus pressure, fatigue, everything. It got really bad by Wednesday or Thursday, and I just had a pity party day -- it just overwhelmed me for a bit.  Then, on Friday, I sat up and slapped myself:

Well, or maybe Batman-slapped myself?? In any case, I am doing better since then.

It is what it is. I said in a Sunday meeting today, and I meant it, that part of what I have learned through this is that in order to move forward, I have to give up trying to get MY way -- I have to accept that whatever happens, things will work out OK; I give my will over to the Lord. That is a part of the message in a wonderful pair of books I've been reading (again) by Lois McMaster-Bujold called The Curse of Chalion and The Paladin of Souls.  In her world, there are 5 gods -- they are profoundly moving stories, but the core of them both is that the main character, in order to make progress, comes to the realization that the gods cannot directly interfere in the world of matter -- they require a person to open themselves up to them, to become a gateway for them to reach out and touch the world. While we don't fully agree with that premise, I think there is a profound truth there -- at least for God to truly touch our personal world, we have to open ourselves to Him, to subsume our will to His. It is not an easy thing, and it is not a single act -- it is an ongoing process.  Someone said to me, but how do we do that? I replied, "I think, for me, it was accepting and saying to Him, I trust you."

Last, I continue with the Zometa "bone juice" treatments to try and strengthen my bones and reduce my risk of future fractures. While it is still not fun, it has gotten better.  The last time, earlier this month, I had a low fever of about 99 for only about 1.5 days, the fatigue and pain were not nearly as bad (maybe 40% of what they were the first time).  So, we'll see how that keeps going.  Here I am on March 11th, having fun (I love the poster in the background.......)



So that's the latest!  Thank you all for being my family, my friends, and for the wonderful things you do.

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!