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 sclerotic lesion.  He said this was unusual -- usually myeloma creates holes in bones (lytic lesions), but a sclerotic 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!