Hoops or Rings

      Right now we are in a hoop jumping pattern. Making sure that we have pre-approval for the transplant is vital since the average transplant can cost around $500,000.   The insurance company, and us as well, want it to be successful so the hoop jumping is an important part of the process.  The recent development of problems with his heart has delayed things, so while we wait on that we are working on some others.  One hoop is to make sure that are no dental procedures needed.   Myeloma can cause problems with your teeth, so we feel pretty fortunate that his dental check up this week didn't reveal a long list of dental problems.   Just a few that we hope to take care of in the next month or so.  Also on the schedule for this week is the the bone marrow biopsy.   This time they want to try in his femur.   When they told us that Dr Hardman, who performed the one in his sternum, would be available to do this one that put our minds at ease because Chris was really impressed with him last time. 

      In some ways the delay in the transplant is a blessing because it gives time for Chris to build strength and for us both to prepare in other ways.  However having a timeline with a goal of transplant in May gave us a definitive goal to prepare for, and not knowing when a transplant might happen brings with to the forefront the ever present feeling of uncertainty for the future.  We were hoping to proceed with collection, but even that is on hold for the time being.

      The past few weeks I've been practicing another skill very similar to making a mummy.  Excess fluid has been building up in his legs.   It was probably held at bay by the fact during dialysis they would usually pull off about 3-4 liters each session.   Without dialysis the swelling escalated quickly.   Using compression socks and short stretch bandages I wrap him up.  The tissue in his legs is finally starting to return to a normal color.   Gravity however works against us and so it's a constant battle to try and keep him wrapped. 

      We are also extremely grateful to be making progress on another front.  This week his brother Fred came to help us redo the bathroom.   It's something we've contemplated doing since May.  Our stand up shower is challenging with a trach.   Since there was a possibility that the trach was (and possibly still is) not permanent we were making it work.  However with the neuropathy (numbness) the step into the shower became an additional challenge.  What is usually a relaxing experience became the opposite, filled with anxiety and worry over what could go wrong and of being hurt.   With our master bedroom being on the main floor of a house with no basement, making a walk in shower with no step is challenge.   However  Fred has come up with a way to do it.   Things are coming along quickly and having a shower where he can sit and relax and feel safe is soon going to be a reality.  It will be wonderful feeling for both of us to know that he can be safe.   

     Something that I haven't mentioned much is his eye.   At the end of last summer Chris's right eye quit moving to the right and eventually up and down.  It was this that led us into the ICU to change his trach and the kidney failure was discovered and then the myeloma diagnosis.  With so much else going, the issues with his eye got pushed to a back burner.  He's learned to adapt to the wonky vision and the accompanying headaches.  About a month ago in a doctors appointment I noticed that his eye had improved and was moving, not just up and down but even to the right.    It has continued to improve and although not 100% better, the double vision is much improved.   Whether a complication from the extremely high blood pressure from the kidney failure, or a weird side effect of the myeloma we are so glad that this is something that has improved.

      We both have really been enjoying the olympics, so it's fitting to include it with our blog this week.   It's wonderful to have something exciting to watch late a night when we can't sleep and hearing the stories of what the athletes did to get there is inspiring.  Staying up late at night to watch the women's USA hockey team win the gold (not normally a sport we follow) was exhilarating.   Perhaps we should also focus on a lesson to be learned.  Just like the olympics, the journey to the finish line is not a quick or easy.   There's a lot of blood, sweat, tears and pain in the process.   As well, there's a lot of unseen people in the background praying for and cheering on the athlete and hoping for a gold medal finish.