Happy Birthday and Mysteries

Time to update the blog!  Welcome back, friends and family.

On March 12th, I had my 3rd birthday -- wahoo!

As a reminder, we call it that because I was given a new birth, a new immune system, on March 12, 2015 -- a day that will live in infamy.  I left the hospital, I think, on March 28th and returned home.  

So I have been around just over three years with a new immune system, and things are going relatively well.  Want details?  Well, you've come to the right place!  If you don't want details, then skip down to the bottom for the BOTTOM LINE.

Last time, I told you all about our trip to SLC to visit with Dr. A at Huntsman.  Well, we have been having a busy spring since then.  It was time for a regular skeletal survey (x-rays of my entire skeleton) to see how things were going, so we did that.  He also recommended a consult with an endocrinologist (to see if I had endocrine problems which are part of POEMS), and my skin doctor to check on the Vitiligo, but also to see if there were hemangiomas which are skin-changes related to POEMS.  So we did both of those, and then the endocrinologist wanted a series of tests, and last I got an updated PET scan to compare with my earlier scan done in 2014.  Oh!  I also had some real fun with another bone marrow biopsy done up there at Huntsman.  Then we went back to see Dr. A and go over everything.

Whew!  At the very least, all of this gives us an updated picture of where things are right now.  I won't go into every single detail, but here are the highlights:

• My most recent lab results showed an M-spike (cancerous proteins) of .91.  So after having been stable at mostly around 0.7 for three years, it has now seemingly taken a step upward to around 0.9.  We have three readings now at 0.9 or higher; we'll keep monitoring it.  The biopsy also showed about 10% of abnormal plasma cells in my marrow which is about where it was when I was diagnosed in 2014.  Kidneys are still doing OK.  
• My blood results have been more steadily lower than before (probably due to the increased M-spike), but not terribly so.  Platelets continue to hover around 65 or so -- I bleed quite quickly when I am poked or whatever, but I am able to stop the bleeding.  The lowered white counts mean being cautious STILL with getting sick from others.  
• PET scan showed two lytic bone lesions that were not active, which I think means that the holes are not getting worse.  No signs of sclerotic lesions.  Spleen is enlarged. 
• Other test results related to POEMS were negative, so Dr. A told me I do not have POEMS.  (Skin results showed some small growths, one of which was analyzed, but the biopsy was negative).  I still have multiple of the "lesser" or optional symptoms of POEMS, and I do have some major criteria (myeloma and neuropathy), but I am missing one of the other core symptoms -- so close, but no cigar!  That's OK, I don't smoke cigars, anyway.  

Patricia feels that the Huntsman team "led us down the garden path".  I can understand that perspective, but even though all of this was quite expensive, I do feel better knowing where I stand, that I don't have POEMS, and that my bones are in relatively good shape, all things considered.  

The other interesting thing about all this was the revelation that I am a MYSTERY patient!  Don't you love a good mystery?  My doctors don't!

Mystery #1:  my endocrinologist was flummoxed.  (I love to use that word!) looking at my results.  Good news:  no major endocrine problems other than my insulin and blood sugars.  Bad news:  in that regard, he couldn't decide if I had diabetes -- my regular blood sugar readings are sometimes fine and sometimes have been very high.  So he had me do a Glucose Tolerance Test, and the results came back around 275!  VERY high -- and normally this would be a slam dunk diagnosis of diabetes.  However, my A1C results, which average my blood sugars over time is NORMAL.  Wha?????  He finally wondered if my A1c test was being impacted by possible autoimmune problems, so he ordered some tests to check my sugars that did not involve using my blood cells -- they came back normal.  However, I know something is up -- I sometimes experience low blood sugars.  He finally decided to diagnose me with Type 2 diabetes, but told me it is mild -- no treatment at this point other than watching my food, reducing sugar intake, and increasing exercise.  He wants to check on me again in 3 months.

Mystery #2:  my relative (or stepwise?) stability with my cancer.  My test results suggest the cancer is impacting on me -- and I know it is; I can feel it.  However, without chemo why is it progressing so very slowly?  Don't get me wrong -- I love that it is -- but it is a mystery.  Dr. A came up with three possible explanations he could think of, but he has no idea if any of them are right:

1. Myeloma is heterogenous, meaning there can be multiple types, and I understood that a person could even have more than one type in their bone marrow.  So he wondered if the stem cell transplant DID work, but it killed the more active version of myeloma that was in my marrow leaving behind a more "silent" or slow moving myeloma that is what we are dealing with now.  
2. Maybe the transplant worked to "knock down" the myeloma -- kicked it in the teeth, so to speak, letting my immune system activate more and start to fight it.  If this is the case the slow progression may mean that over time my immune system is slowly losing the fight, but the battle continues!  There is more of an equilibrium between the cancer and the immune system than there was before.  
3. It could be that my ongoing Zometa treatments, possibly combined with my Chaga tea (thanks, Roy!), etc. are keeping the cancer from spreading quickly as it is wont to do.  
4. Dr. A did not say it, but we would like to add:  A MIRACLE, the result of a loving priesthood blessing, and the prayers and love that have come our way.  

We don't know which, if any, of these explanations is right, but they are kind of interesting to ponder. We also asked them why I was still so tired and had trouble breathing with much exertion.  They said they didn't know, but that they wondered if it could be related to my heart and recommended I see a cardiologist.  More doctors!  So we'll wait on that a bit, but will probably check it out.  

OK, here it is:  

== BOTTOM LINE ==

I am slightly worse off than I was six months ago.  I apparently do have mild diabetes, my cancerous proteins have increased slightly, about 10% of my plasma is cancerous, and my blood counts are lower than they have been.  However, I am WAY better off than I was when I was diagnosed in October, 2014 when I was beset by infections, etc.  My ongoing home treatments, the use of my antiviral medications, and my Zometa all may be helping me prolong my days and keep the cancer at bay without chemo!  Wahoo!  

So we are heading off to see Wesley's graduation at the end of the month, spend a few days in the Big Apple, and then come home to finish up and submit grades.  

I am grateful for each day I have; I love my family and friends, and appreciate tremendously the support I get from my department at UVU.  Thank you all -- here's to the good fight!