This is Life

     This week was a week of ups and downs, highs and lows, despair and hope, tears and smiles.  No one ever really knows how long their life will be, and realizing that there is a pretty good chance that I will outlive Chris has been weighing heavily on my heart this week.   I feel far too young to be a widow, and so grateful that we are married for eternity.  

  We talked with Dr Sborov on Monday morning for about an hour and again on Wednesday while doing chemo.   We were given more information about his test results.  The sternum biopsy on Halloween, provided enough to run testing, however wasn't an ideal sample.   The bone marrow was hypercellular (meaning more cells than normal) and they were also crushed.  However with the pathologists conferring with Dr Sborov and combing the results of the previous testing that has been done they collectively are in agreement with the diagnosis.   He said he would characterize Chris as having Oligosecretory Lamda Light Chain Multiple Myeloma.   The Oligosecretory Lamda Light means his body is only producing part of the immunoglobulin called the light chain.   

     There are two different systems for staging multiple myeloma and both have three stages.   His staging is also a bit limited because of the quality of the bone marrow biopsies.  In ISS system, they look at the Beta2 Microglobulin.  Because of the kidney failure, his is high and places him in stage 3.  In the RISS system, it relies on the ISS system but also incorporates LDH (an enzyme) levels and cytogenetics (DNA).  His cytogenetics are not high risk, but his LDH was high risk because it was elevated.  He is also in stage 3 in the ISS system.  The higher stage means they need to be more aggressive to give him the best chance.  

     As with any disease, catching it in the earlier stages is better, but with multiple myeloma most people (approx 95%)  are not diagnosed until they are in an advanced stage.  One of the key things that makes him such high risk is his kidney failure.  The average life expectancy for someone in Stage 3 is 3-5 years.  It is an average so some live longer and some live less.   Many advances have come in the recent years, and Dr Sborov said that there are a significant number of new agents that will available in the near future that have a very good chance of improving the odds.    While the agents he is referring to are medications, thinking of his chemo being filled with secret agents.   I also think watching the movie Osmosis Jones needs to be watched again in our near future.       

  We also asked more about what the short term plan is.   His chemo (CyBorD) is done in 4 week cycles, and while his started a bit un-traditionally because of inconclusive test results, he is now on more of a regular schedule and Wednesday was the end of his first cycle.  So far he is responding to the chemo, and the plan is for him to continue doing cycles of chemo, one right after the other likely for at least 6 months.  

     He is not a candidate at this point in time for a Bone Marrow/Stem Cell Transplant.  If he continues to improve and respond to the chemo, then a Bone Marrow Transplant will be an option and the next stepping stone.   Being eligible is a sign that things are getting better, not worse.   Unlike what we were picturing, the procedure itself it isn't painful.  They would give him a shot for four days which would tell his body to produce more of a specific stem cell.   They would then harvest hopefully 15-20 million of the cells and then freeze them.   They would then give him a different chemo to kill the rest of the defective cells.  After which they would replace them with the filtered out good cells, via IV.   He would be in the hospital for at least two weeks and followed carefully for another couple weeks.  It would be tough and make him pretty weak, but he would hopefully start feeling better after 2-3 months.   The bone marrow transplant itself wouldn't be painful, but the side effects from the chemo could be (mouth sores and GI issues).   

     Wanting to do everything we can to beat this things, from researching I have found there are things that can improve the life expectancy and it's been comforting to read that many of them are already being taken care of.     

Quality and Skill of Care
Myltiple Myeloma is rare, many hematologist/oncologist may not see one patient in a year.  An experienced specialist is able to stay on top of the current treatment/medication options and would have access to drugs that other oncologists would not.   IF those fail, they are also aware of clinical trials.  We are so grateful that we live so close to a top notched facility and in the skilled care of Dr Sborov.   Not only is he very knowledgeable, but his compassion and concern is unmatched.   

Health Insurance
This goes without saying, but having access to health care is vital.   Chem is expensive!   His current chemo drugs cost over $10,000 a week.   Those without healthy insurance rarely live longer than a year.   While going to work and leaving Chris is very hard, having healthy insurance will undoubtedly give him the best chance.    Patients rarely die from multiple myeloma, but instead from complications such as kidney failure, infections or anemia.   Getting good supportive care is also vital.   The team a Kolff Dialysis is doing an amazing job at treating his kidney failure, and Dr Sborov texted this week to tell us the good news that his creatinine levels are down to 4.21 a good trend in the right directions that is giving us hope.



Age
The average age for being diagnosed with multiple myeloma is 70.  At 43 Chris is very young to have the disease, but being young also gives him a better chance to survive longer.  Chris is determined to do everything he can, even if it's tough to fight.    When texting with Dr Sborov this week Chris said he has too much to live for, he is determined to beat the odds.      As one can imagine, hearing 3-5 years was hard to hear. 

     While this week was hard, it was also filled with many blessings.  

On Thursday evening Chris and I were discussing the upcoming week and month and trying to make plans for how to best use our time and how to fit in all of that we needed, let alone anything with the holiday's.  After our discussion I fell asleep and Chris later mentioned that he spent much of the night praying that somehow things would get better.  This quote on time I feel perfectly described how we felt.       

Friday was a busy day.   The very rainy/snowy weather made getting to dialysis an adventure, but we were grateful that we made it safely.  Our good friend Logan,  had come the previous day to my work and took care of a replacing some fluid in my car.   He also fixed the radio, something I've been desperately missing on the drives up to the UofU.   I was able to listen to music on my way home.  A few of my favorite Christmas songs came on the radio, including "Mary, Did You Know?".   Tears streamed down my face as thought of "Baby boy who could calm a storm with his hand".  The storm of emotions that comes with a cancer diagnosis is a pretty brutal storm.  I dried my tears and went to work and jumped right in to all of the stuff that needed to be done, a good distraction.  One of my bosses was there and after giving him the latest update we talked for a bit and I was again in tears at the support, concern and compassion of the amazing people and company I work for.  I felt some heavy burdens being lifted off my shoulders.

     Friday evening the Sister Missionaries who had stopped by on Sunday came back for a visit and brought an uplifting message about trials.   Today I also was so grateful to have a real day off.   Sleeping in was restorative, and accomplishing a few things was great.   My brother also came to visit with his wife and sweet baby Tess.   Baby giggles and snuggles are very therapeutic. 

      As like everyone in this coming week, we ponder what we are grateful, I want to let each of you reading how much we appreciate you.   I'm not able to write about all the little miracles, blessings and prayers that are helping us survive.   The messages of love and encouragement often come at a time when we most need them.

     May your coming week be filled with blessings, good company and delicious food.