Side by Side

     Goodness, time is a crazy thing!   In thinking about the past week and what's happened since I last updated it, it feels like much longer than just a week.   It's also amazing to think how much things have changed since last week, but yet are still the same.  Everything right now is in a bit of a holding pattern while we wait to see another new specialist, our appointment with Dr Ryan (a Cardiologist) isn't until April so for now we must practice patience.   We got the results of his echo and we're both a bit nervous about what it means.   All previous testing for his heart has been fine, so this is a whole new medical system we don't know much about.   We're trying to wait patiently for the specialist instead of learning from google but the main thing we know is that his right systolic ventricular pressure (RSVP - Yay for an easy to remember acronym) is very concerning.  We're trying not to worry, but it's hard not to.  

    On Monday we had planned to do the Bone Marrow biopsy, but since it was delayed the main thing that we had to worry about was samples.   We got everything collected, drawn and turned in.  Sounds a lot like homework.  :P  I also was able to work on getting his new trach supplies ordered.   They changed it last week to one a bit more traditional than his custom one, but still not common.   Unlike his previous ones it's got an inner piece, called a cannula, that needs to be removed and replaced.  The one it came with said do not clean or re-use, and all they sent us home with was a prescription to order more.  The respiratory therapist had a hard time locating the needed piece but was able to get them ordered and they arrived later in the week.   His trach has been just one of a few difficult things he's been dealing with, but this last change made a big difference and now that we've got the needed parts dealing with his trach has become much better.  

       As well, the results from the tests on Monday have started to come back in, and good news... they are very encouraging!   His creatinine (one thing they use to measure his kidney function) is so very close to normal.   .72-1.25 is normal, his was 1.26.    His kappa and lambda light chains, which is one of the primary tests for his myeloma were all within normal range for the first time.   The chemo for now is working, and for that we are very grateful!  




      On Tuesday we got up bright and early to be at the hospital for the MRI.  Chris has been pretty worried about it.   Anyone who has had one will agree that they are really no fun.   From the very beginning of his life (as his Mom can attest) he's had wide shoulders that make things difficult.  His unusually wide shoulders make fitting into an already tight space of an MRI even more complicated as his arms must be positioned into very awkward positions.   Add his trach into the mix, and his port for his chemo and there's a lot of things that could go wrong.  With the need to scan his full body as well as his brain (to check on the brain tumor) it was supposed to last several hours.   Things seemed to be going OK when someone grabbed his arm and caused pain to shoot down his back.   Chris gave it his very best try, but the anesthesiologist was worried that permanent damage would happen if he tried to just "tough it out" any further and together they made the decision to call it off.   
    
      After the MRI we waited around for another appointment.   From this specialist we learned that Chris has symptoms of hypervolemia (too much fluid in his blood).   This is likely because of, or a complication, of his heart problem.   Knowing that our appointment with the cardiologist is still so far away, it was a HUGE relief when Dr Sborov's office called that evening and said that they had heard the results from our appointment and they wanted to prescribe a medication to help.   Trying to balance things back out can be very tricky so they will have to monitor his levels very carefully, and more testing was done on Friday to watch over things.  

      Because Chris was supposed to be off chemo for a couple weeks in preparation for collection.   When they called to get chemo scheduled again, we petitioned for them to let us skip this week and start up next week since it was Valentines Day, and they agreed!  I was able to take the day off work and we were able to spend the entire day together, and it was wonderful.   We went and got pizza at our favorite pizza place, and played some video games.   When you are told that you have an incurable cancer and that you likely have 3-5 years to live, it feels important to make the most of every day, but with so many appointments it's a hard to find the time to do so.   I'm so very grateful to have a rare day to spend with my sweetheart doing some of the things that we love.  Valentine's Day also brought make many fond memories for me of my Grandma.  I'm sure she was smiling down on us in our fortune of having a free day from chemo to spend together.  

   

          Friday we had an appointment that we've been looking forward to for a while.   Thanks to a high school student named McKayla from Idaho, Huntsman offered a music therapy class to teach patients and their caregivers the Ukulele.   When I was a child my Grandma had a toy box and one of the things in it was a ukulele.   I had always wanted to learn how to play it and Chris has as well, so when we saw the opportunity to attend this class we signed right up.   With all of the tests and appointments, we knew it would be great to have something fun to look forward to.  We both had a great time!  KSL and KUTV were there as well.  In the video (see the link for KSL article)  you can see my hand playing the ukulele a few times with Chris's oxygen tank in the background.   They are going to continue the class for six weeks, but sadly they are scheduled the same time as his chemo.   But thanks to McKayla we both ended up with a ukelele so we can play at home on our own.  

      As we walked down the hallway at Huntsman on Friday, me striving to steer the oxygen tank without incident, I pondered if it was best to walk in front of Chris and risk getting to far ahead, or following behind and letting him lead the way.   An oxygen tube that had lost it's connection subtly reminded me that side by side, holding hands was the best option. 
It's not easy, but I'm so grateful for the opportunity to be beside him.