Sunday, December 31, 2017

Then...and Now

First of all, I write this on the last day of 2017, so let me just say:
I wish you all a terrific new year and hope it will be a great one for you and yours!  

I also feel I should update everyone on my visit to Huntsman Cancer Institute in November.   I've never been to Huntsman, so this was a new experience.  We met with Dr. Atanakovic who is the Director of the Myeloma Clinic.  This was really nice because that clinic sees over 800 patients (almost 900) all of whom have Multiple Myeloma.  So, even my local oncologist who does see Myeloma patients does not see that many -- he mostly deals with leukemias and other types of blood and other cancers.  So this was a chance to hear from someone who is immersed in just my cancer.  

I will say that Huntsman is beautiful -- although I am sure it was very expensive to build, going into that setting is somewhat relaxing.  To see a clinic with people wearing masks, and to see bathrooms where they have wipes next to the door handles really made me feel that the anxieties I live with every day are understood.  The Dr. and his PA were both really up on my chart, asked many questions, and reviewed my prior results.  

He said a few things that were interesting.  Regarding my prior test results, he basically told me that I had an "atypical form of myeloma".  He said that my results were quite surprising to him -- when myeloma comes back, it usually is quite aggressive, but he was impressed that I had been stable for so long.  He thought that it even looked a bit like the disease had "regressed" back to what they call smoldering myeloma.  In our discussion, he noted that it was possible that I could remain stable if this pattern continued, possibly for years.  He said there was no need for any additional treatments at this time -- whew! -- and that I should keep doing that I have been doing.  

He was concerned about my shortness of breath, skin vitiligo, unusual liver function scores, and other issues.  He wanted to run some more tests.  Then he set up a follow-up appointment, and he and his PA left.  They came back in, like, five minutes!  He said that they had been discussing my case as they left and, his PA said something that really caught his attention.  In my original MRI skeletal scans, they had noted that one of my lesions/damaged bone areas was a lytic lesion.  He said this was unusual -- usually myeloma creates holes in bones, but a lytic lesion is like scar tissue on the bone.  This linked to a possible situation that could explain many of my symptoms -- a syndrome called POEMS.  This is a quite rare condition, so he didn't think it was highly likely (1 in 1 million), but he thought we should check on it.  

The other thing he said that Patricia really found liberating was that since my M-spike (myeloma protein spike in my blood) was 0.3 when I went in for my Stem Cell Transplant, he would not have done the transplant. He said if the spike, the abnormal proteins, are not 0 at the start of transplant, he believes the transplant does not work.  Of course, this was born out by the return of my myeloma very shortly after my transplant, although it did stabilize.  She asked him to make sure to share this type of information is shared with LDS Hospital so that other patients would not have to go through what we did.

(Now to the title tie-in)......So, that was then.  So what is going on now?  Wazzup?Before we left SLC, we got blood drawn (lots of blood drawn) and got a chance to visit with my Aunt.  I went back in December for lots of fun including them drilling a hole into my left hip for a bone marrow biopsy and more blood tests as well as the always popular "orange jug" 24-hour urine sample which I got to carry around with me for a while.  It has been a while since I had a biopsy, and it made me remember why I don't really like to do it.  That was almost two weeks ago, and I am still a bit stiff, but at least the itching and pain have gone down.  

I have another meeting with Dr. A next week, so he will give me all the results, and we'll discuss them.  I also have another bone scan in January, so I'll have that data when I meet with Dr. Wallentine locally again.  From what I can tell (spoiler alert!):  I am not showing abnormal levels yet of elevated free chains (which are the molecules that damage my kidneys); the POEMS results also came back, and I do not have that condition -- which still leaves questions about why I have so many things going wrong at the same time.  I've got Questions! ????????   Here's the bad news:  Remember that my M-spike has been stable around 0.6 - 0.7 for more than 2 years now.  It bumped up occasionally to 0.8 and then would drop back down the next month.  Well, my November reading was 0.91 and my December reading was 1.03; I'm hoping this is due mostly to different labs?  But we'll talk about that.  It may mean that the myeloma is NOT going to be stable for years and may be coming back.....if it goes up by .10 every month or so, we probably would start talking about chemotherapy again.  Arrrgh.  We'll see what Dr. A says, though, in light of ALL the test results, before I get too anxious, but it would explain my slight increase in fatigue (I'm sleeping better though as a result......).  My white blood counts in December also dropped quite a bit; they had been just below normal, and this last time were a fair amount lower.  I've also lost about 3 pounds in the past month, although I am cutting back after the holidays!  

So, that is the latest.  Hate to end the year on a bit of a low note, but I am still kicking and will still be here in 2018 -- we are planning a trip to see Wesley's graduation at the end of April, and then on to NYC where we will see at least one Broadway show and other sights.  I am looking forward to 2018 and my blood cells will just have to keep up!  I'll leave you with these thoughts -- and my best wishes for a wonderful new year! 

Sunday, November 5, 2017

A New Leaf? We'll see......

With the fall leaves all coming down and the beautiful colors, I thought that I needed to post an update to my blog.  I have been meaning to write this now for 2-3 months, so I am glad that I am finally getting to it.

In October, we went past my 3 year anniversary of my full diagnosis.  We had already been told earlier in the summer that I likely had myeloma, but it was uncertain how serious it was.  Only in October 2014 after lots of testing and scanning and other things, was I diagnosed with full myeloma.  Of course, you all know what happened after that.  So, three years -- and I'm still kicking!  Wahoo!

Am I still grouchy about this?  You bet.  Is every day wonderful?  With more cold, my neuropathy is acting up, and I am chilled and have more trouble with my hands and feet.  However, I was able to travel to Montreal for a conference a couple of weeks ago, and although I got tired, my presentation went well, and I had some great fun networking with colleagues, learning new things, and playing some board games!  
Photo credit to Derek Bruff (takes great pictures!)
So what is the update?  Steady as she my last meeting with my clinician, the blood work looked about the same.  My M-spike is still at 0.7, my white and red counts were a bit lower than normal although one of the specialized white counts was up.  I wonder if that might be due to my system trying to fight this low-grade sinus infection I cannot get rid of and that sometimes makes it hard for me to breathe at night.  My kidneys are looking OK.  My weight is about the same.  It has gone up slightly; in some ways this is good, right?  If it was going in the other direction, my anxiety would be going up. 

I also decided to start back on a regular exercise program to see if I could increase my energy and stamina, so I put my Wii exercise program to start up at the easiest level.  The program builds in 4 days of exercise every week for 9 weeks.  I didn't make it two weeks!  I told the doctor that I cannot exercise two days in a row; it wipes me out for 3-4 days afterwards.  She looked at me and said evenly, "Well, don't work out two days in a row".  Yeah, OK.  It is not the end of the world, but it is annoying.  So I'm trying to see if I can do 3 days a week; it is better, but still difficult.  

So Where's the New Leaf????

I have been doing some soul-searching with the helpful input of my lovely wife for the past several months.  I got up in testimony meeting several months ago and said that I was grateful for the fact that I was stable.  I said, It wasn't the miracle I asked for, but it was the miracle I got.  That is still true, but I realized that my thoughts and my statement was kind of like a slap in God's face -- a backhanded compliment.  I have decided I need to repent, turn over know.  I am working to accept what I have and to be truly, grateful for it.  Because it is a miracle; no one knows why I am stable, but I have had 2 1/2 years without chemotherapy; I am able to work, to go to a conference, to walk with my wife and dogs.  And even though what I used to be able to do is gone and probably will never come back, I am breathing and walking in the fall colors and enjoying the change in the seasons. 

The only other new thing to report is that we have an appointment to go up to Huntsman Cancer Institute on Monday the 13th to meet with their Myeloma specialist.  We had a physician friend tell us that it never hurts to get a 2nd opinion, a 2nd look at how things are going.  I still have nagging worries that because I did not go on maintenance therapy, that I may have shortened my life, and I'd like to discuss that with another doctor.  Because he is at Huntsman, I am also going to ask about clinical trials and thoughts about whether it is worth it to consider doing one to see if I could feel better. I hope that doesn't sound ungrateful after what I said above.  I think they are separate things in my mind.  If there is a strong chance to achieve remission, it may be worth it, but if not, I'll stay where I am and deal with it day to day, with gratitude for every day I am given.  

Have a great fall and holiday season!  Thank you all for your support.  

Sunday, March 12, 2017

Second Birthday? I thought I was Older Than That!

Is it really only my 2nd birthday?  The answer is yes!  If you have been tracking my posts for the past two years, this means that today I celebrate the rebirth of my immune system (and thus my life).  True, the pesky buggers did not do the job of eliminating the cancer from my bone marrow, but at least I am alive and still kicking, so let's celebrate!  Wahoo!

So, what's the latest?  Overall, mostly good news!

It has been quite a while since my last report, and I was somewhat worried then about an uptick in my M-spike score.  However, that came back down.  In December, it even dropped to 0.6, but that excitement was short-lived.  It has been back up and as of my last reading on January 30th, it was still stuck at 0.7.  So, basically no real change -- those were just random fluctuations.  I also received my last Zometa infusion at the start of January.  Why? my most recent visit with my oncologist at the end of January, we reviewed my results and discussed the situation.  He said that it was clear that I still was experiencing "stable disease" which is a term I had just seen for the first time in a webinar about Multiple Myeloma for patients, coming out of the annual meeting of hematologists (blood cancer specialists).  He also said that given this situation, he did not see the need for me to keep coming in monthly or even bimonthly.  He ALSO said that he just read two meta-analyses (studies of many smaller studies to look for broad general patterns) that showed that Myeloma patients receiving Zometa showed the same benefits whether they received monthly treatments or a treatment every three months.  Eureka!

I say this only because.....I really, really hate those Zometa treatments!  So my next treatment won't be until the start of April -- and then I'll probably feel like crap for the entire weekend.  Maybe a good target for Conference weekend?  I can stay at home.......hmmmm.

Other than the doctor visits decreasing and the Zometa treatments less often, things have been going reasonably well.  In my last bloodwork, I actually had hematocrit and hemoglobin counts that were in the normal range.  Wowzers, that hasn't happened (hemoglobin) since last May.  This means that I had enough iron to be able to get a reasonable level of oxygen in my blood......except my red blood counts were still below normal, but not terribly below the bottom of normal.  I attributed my higher iron counts to eating more kale.  We'll see if that keeps up.  More kale on the menu (crunch, crunch)!

We did have a (sort of) funny interaction with the doctor before we left.  I said, "If my iron counts are in normal range, and my red counts are awful, why am I still so tired, and out of breath if I go up some stairs?"  He paused for what seemed like a long moment and looked at me, then slowly said, "Well, you have gone through five rounds of chemotherapy; you went through a stem cell transplant, and you still have cancer --  you have been hammered, and your body has been prematurely aged."  I am thankful he didn't pull any punches but oooof!  He's right, though.  I'm walking, mostly every day with my lovely wife and the dogs, and I am healthy enough to still be working.  I'll be glad for whatever I can do.

Speaking of working -- about 6 weeks left in the semester.  I AM taking summer off -- no more summer work for me.  My book has been printed -- hooray!  Available now on and!  And it is generating interest, so I'm glad that the book seems useful to many, and I hope it makes a difference.

I have been able to attend a couple of conferences and even presented in one (for less than an hour) -- so I'm sort of getting back in the swing.  Fall semester I will probably have three classes on my workload plus my coaching stuff, so we'll see how that goes.

We will be traveling in a couple of months for my nephew's wedding -- this will be a test of whether I'm capable of doing any larger traveling which is still on my bucket list!

The overall verdict?  Life is good.  Cancer sucks. I still think about it every day. My wife and I have been attending some workshops on retirement and planning for the future, and it has made things a bit more acute again -- I am still hoping to retire on time, and I do want some time to see my grandkids!  I'll take every day I can get.  I am very, very grateful for all of your continued support and prayers, and for the endless support of my loving wife.  I thank God for each breath I take.  May each of you find joy in your days.  This is a birthday worth celebrating!

Sunday, July 31, 2016

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.

Sunday, May 15, 2016

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!

Sunday, March 27, 2016

Birthdays and anniversaries

Image result for birthday cake
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:

Image result for batman slapping robin

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.