The Battle

     Last weekend I connected on Facebook with a woman who also lives in the Salt Lake area and is also battling Multiple Myeloma.   She had commented on a post last year, and followed up with us to see how we were doing.  Her name is Becky and she was diagnosed in September 2016 and has been through a transplant and is currently in remission.   She shared some amazing insight about what we can expect.   One hard thing to hear was that "maintenance" chemo which is usually what follows transplant is often the same chemo that you were on before transplant in near the same dosage and frequency.   Learning that going through the transplant just to still be on chemo on the other side was a hard blow, but probably better to hear now than later.   

      She also shared with me a blog of a friend who is caregiver for someone battling cancer (www.contemplatingcancer.com).   I've read several of them and they bring tears to my eyes and touched precisely on so many of the emotions, thoughts and insight of what life is like as a caregiver.  One such simple but perfect phrase was that "As a cancer caregiver, I am tired. I am so, so tired."   This Thursday at work was inventory at my store.   I've been preparing for at it work since Christmas and my employee's have been working hard to make sure we are ready.   Being away for many doctors appointments and having to delegate so many tasks made it an even bigger task than normal.   I was exhausted when I got home and thought for sure I would sleep well last night.   My brain had other idea's.  It quickly switched to today and our appointments and wouldn't turn off.   Instead of a good night's rest I got a few hours and it was soon morning and time to get up.   However, it's the weekend and sleeping in is at the top of my priority list for tomorrow morning.  Being a caregiver is tough and exhausting but as another of her blogs said "I would trade away the diagnosis in a heartbeat, but being by your side? I would do it again, a million times more."

      Anyways, enough about me.  Today we met with Dr Sborov again.  It's been about a month since our last visit and a lot has come up since then.  However thanks to my friend Rachel I've been anticipating this visit for a while.  She thought of and arranged for a wonderful surprise and I was able to participate by making sure things were set on our end.   Seeing Chris's face when Dr Sborov entered the room was priceless.  A critical member of Team Chris now has a jersey to wear on game days!

    In addition to Dr Sborov we met with several other people today and were at Huntsman for the entire afternoon.  We met a new lady named Jan (another of Dr Sborov's right hands).  We also met Nico (a social worker) who talked more about what to expect .  Like pretty much ever day our plans are constantly changing as we still try to bring into focus the complexities of his disease.  Plans for next week were all mixed up as they've decided to do another round of chemo before doing collection.  The biggest thing still on the agenda for next week is the MRI.  Chris is very nervous about it, but Dr Sborov pleaded for Chris to try to continue with the MRI if at all possible.  We had met with his ENT this Wednesday to get his trach changed out in preparation for the MRI (his previous one had metal).  Dr Sborov's team has done a lot to try and get the MRI scheduled and done safely.   With less than optimal bone marrow biopsies, it is an instrumental tool to bring into focus what other problems we might be able to expect as well as to shed light on some of the ones we are already aware of. 

Luckily they are going to delay the bone marrow biopsy that was scheduled, as trying to have the MRI the day after the biopsy we felt would make the MRI potentially more painful and traumatic.    The plan to do another round of chemo means we'll likely be doing collection at the end March instead.  Transplant could and may or may not still be done in May.  As well, the results of his EKG and Pulmonary tests (Heart and Lungs) came back and they want him to add another couple of specialists to the team.  The more clearly they can focus in on all of the issues, the better prepared we will be for transplant.  Chris still isn't 100% sure that he wants to do the transplant, but we are still hopeful it is a decision that we will get to make instead of an option taken off the table.  

   

     Luckily the appointments we had today ended in time for us to get home and watch the opening ceremonies.   We both look forward to the olympics and being able to watch them together was a nice way to end a super busy week.  Having another team to cheer for will be a great distraction and a fun thing to look forward to each evening.   Go team USA!