Ashes, Ashes we all Fall Down

     Early in our marriage Chris gave me a beautiful emerald green necklace.   It's one of my most treasured gifts.   I was born in 1980 just two days after Mt St Helen's erupted.   When Mt St Helen's erupted a cloud of ash darkened the skies.  It was a catastrophic event.  However from that ash that covered many states, they discovered through a process of refinement using heat and pressure  something beautiful and unexpected could be created.   The necklace he gave me was a beautiful green gem called Helenite.  

    

       This past summer at our manager meetings a co-worker of mine talked about the scriptural phrase and her journey to discover what "Beauty for Ashes" meant.   Sadly my brain has been overwhelmed since then and I can't remember much of what she said, but I have thought a lot about the phrase and what it means.   To me it's about turning difficult and painful things into something of beauty.   We're just a few months into this new difficult journey and it seems to grow tougher each day.   We both strive see the good, but typical of January, it's been difficult to see the through the gray and not feel overwhelmed.   

      This year for Christmas, he got me another amazing necklace.  While most of the helenite made is a beautiful emerald green color, a very small amount of helenite is deep red.  The fact that it's a deep red (like the Myeloma Ribbon) and very rare (just like myeloma) makes it a perfect reminder of our difficult journey.  The symbolism of the phrase "Beauty for Ashes" turned into a physical manifestation is beautiful.  Treatment for his myeloma covers so much of our life in a blanket of ash, and the pressure of it sometimes is overwhelming but hopefully once we reach the other side of this "refinement" we'll both emerge better for it.  

      This week I've been doing a lot of reading and learning about the stem cell transplant.    When they first mentioned it I think we clung to the fact that it's his best chance to survive and came away with hope that overshadowed the difficulty.  We knew it would be difficult but didn't at the time think to ask more questions about what to expect since it was still quite a ways off.   The transplant road is not easy and there are many potential pitfalls along the way.  

        Many people will call their transplant day their "re-birthday" as essentially it's a complete reset of your immune system.   Extreme care will need to be taken to allow his body time to recover and rebuild.   Something as simple as a small cut from fingernail clippers could turn into a deadly infection.  Hand sanitizer and masks will be a staple at our home for quite some time and even so, it will be a while before he can shake hands.   He will need to follow a neutropenic (low-microbial) diet since his body won't be able to fight off any food borne illnesses.   

     Someone asked me the question about if he would "forget" all of his childhood immunizations.   All of the things that he has built up an immunity to will be wiped away and he'll be starting from scratch.  I hadn't thought about it in that depth, but have since learned that he will.  Patients with no signs of myeloma a year after transplant who are healthy enough will often be re-immunized.  Anyone who is sick or has been around anyone sick should not visit, and even healthy visitors will probably be limited while in the hospital and for the first couple months.  He could still use your support and encouragement so don't hesitate to send message or photo.  

      The reason I started this blog was to help keep our family and friends up to date with Chris's condition.   So, if there's any questions you have, don't hesitate to ask and we'll both do the best we can to answer them, research them or ask his doctor.   

      

Just Keep Swimming

     Since Christmas we've both enjoyed a little bit of a reprieve from a life filled with hospital visits.  They didn't end, just lessened significantly for a time.   The good news is that even without dialysis, his kidney's are holding their own and his creatinine levels are slowly working back to normal.   We don't have numbers for how much his kidney function is, but it's enough to not need dialysis.  About two weeks ago they were able to remove the dialysis catheter and the wound is created is starting to heal.  He says frequently how amazing it feels to have that gone.   Not doing dialysis is a huge blessing and we are so grateful for this miracle.  Dialysis was pretty draining on him and really wore him out.   For the past few weeks the main thing we've had to do is chemo.  It makes him feel pretty crummy for several days but good news is that it's working and his lambda light chains are getting closer and closer to normal.  They were over 300 at diagnosis are are now down to 2.68.  It's a burden lifted when the pain and anguish you are going through is at least not in vain.
   
      The side effects from Chemo are numerous.   The main one being neuropathy, numbness, tingling and pain in his feet and a finger.   It is a little bit better since they lowered one of the chemo meds but it still makes getting around difficult and painful.  He's trying hard to overcome and is walking a bit more.  I had a three day weekend last weekend and to celebrate the freedom of no dialysis port we decided to to try a weekend getaway.   We haven't been out of the house much except for doctors appointments for a very long time so this was huge.   We picked a hotel that had a couple of our favorite restaurants nearby and ordered takeout.  It was very nice and relaxing for both of us.  At work January is a tough month with so many things to do and not enough time to do them.  I'm also trying to prepare my store for inventory next month.  A few days away from work and medical appointments was glorious.  I even got to sleep in a real bed!

      Yesterday we went back up to the main Huntsman for chemo and to meet with Dr Sborov.  He started his 4th cycle of chemo and is now just over half way done.   They want to start the process for transplant.   Our short couple weeks off from appointments is over and they will be doing all sorts of tests to check and prepare for any problems.   They sent me home with a binder full of information and I'll attend classes to be able to be his caregiver.   After he finishes his 6th cycle he will enter a "priming" period.   They will give him a shot that triggers his body to produce a whole bunch of young stem cells.  In a process similar to dialysis they will filter these off and then freeze them.   After that he'll be in the hospital for several weeks, and then home with extreme care for several more and very cautious for about 100 days post transplant.  A transplant isn't easy but hopefully it will be worth it.   Many myeloma patients need multiple transplants, so our prayers are that this one is successful and he will have many months (or years) of remission.  Chris felt much better after our appointment yesterday and again was so grateful to have Dr Sborov on "Team Chris".   They started him on a few medications which helped with some of his side effects and he got his first decent night of sleep so far this year.

     Today we also were again at Huntsman for assessment for rehab.  Just trying to walk or climb the single step into our house has been difficult so being able to safely try to rebuild his strength is important.

      Last year we started out the year completely unaware of the challenges that we would face.   This year we start this year a bit overwhelmed with the knowledge of what is likely to come.  Many days are tough and filled with challenges, but they've also been filled with good friends and family to help bear them.   Just like last year we'll get through by taking it one day at a time.   A good friend whom I met during a difficult time in her life had Dory to remind her to "Just Keep Swimming".   Things turned out well for her, I hope and pray that one day things will turn out the same for us.