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. 




 

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.  

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!

King of Hearts

    This was a post originally posted to Facebook a year ago, but the analogy is one I've thought of often since and thought it would be a great addition to the blog.  (Thought this picture was perfect since we were dealt some pretty massive cards).  

February 2nd, 2017

This morning I read an

article from the Ensign that was the perfect analogy for my life. A short summary of the article compares life to a card game where you never know what cards you will be dealt, they key is to make the best of what you have and enjoy the journey.

https://www.lds.org/ensign/2017/02/young-adults/making-the-most-of-what-we-have?lang=eng

Almost 17 years ago I married the most amazing man. We are a perfect match who are so very happy together. We love being together, no matter what. We lucked out on the "marriage" card. We hoped for, but have yet to be dealt the "child" card. We've made the best of the cards in our hand and tried to always be positive.

Four years ago a we were dealt a "bad-health" card when we found out that Chris had a brain tumor. It's been a long tough four years, but luckily with the marriage card we now play a co-op hand. We've tried to focus on the positive and have enjoyed the time we got to spend together. It's been tough, but there have been many blessing cards along the way.

Last month with both were sick with some nasty bug and again dealt an undesired card. Mid-round, his upgraded to pneumonia. We spent about 6 hours in the emergency room before he was admitted to the hospital. He spent a couple days before we convinced them he would heal much better at home.

Last night I had a hard time sleeping. I had seen just the first of what I know will be several bills from that adventure. For just one of the days in the hospital the bill was $12,000, of which our portion after insurance is about $2,000. Medical bills are no new thing, this one for some reason just was hard blow. I'm so grateful that even though we didn't feel we could afford adding him to my work plan 5 years ago that we did as I don't know how we would have survived without it.

Once Chris asked me if looking back I had any regrets and I immediately said "Yes." I then explained that I wish I had taken more pictures. With that being said, this is a gem that I took during this past "round". It perfect captured a rare peaceful moment.

"We’re all going to experience hard things in life. We’re going to experience trials and heartache that we wouldn’t have chosen for ourselves, had we been given the choice...we may discover that our growth is made possible by the very life circumstances that we find ourselves (not really wanting to be) in."

"The thing about cards is that they change."

No matter then next card that is dealt, I'm glad to be playing the game with this "King of Hearts".

     Our cards surely did change after this Facebook post and several even more challenging cards were added to our hand, thinking about these rare cards and all we've been through is something that can still take my breath away and tears to my eyes.     However along with the numerous bad cards, we also luckily were dealt an amazing "head coach" card with Dr Sborov leading the way and joining so many others on "Team Chris".   With a Christmas miracle we were able to discard the kidney failure card.  This week for the first time since they originally caught them elevated, his creatinine levels were within normal range.  We are also  blessed to have the support of so many family, friends and coworkers.  Our cards are numerous and the rules seems to constantly be changing but I still am glad to be playing the game with my "King of Hearts".  We've spent more time together than ever and my admiration for him grows each day.   He's amazing and I'm lucky to be by his side.

    Our lives are a roller coaster of emotions.   Fear, hope, sadness, joy, humility, gratitude and love are just a few of our companions.    The transplant road that we face ahead has taken some unexpected turns as they are hoping to start collection of his stem cells at the end of February instead of right before transplant.    It was a bit nerve wracking for us to have this coming up so quickly.   However being able to separate it into two separate events I think will make it more bearable.  February is going to be a busy month, filled with LOTS of doctors appointments plus inventory at work, but the most important of all days, I hope to somehow make Valentine's a memorable day.  It's the love we share, and that other share with us that is giving us Joy and the divine hope to carry on.