Humbling Experiences

Just under two years ago, my sweet niece and her husband showed up at my door and asked to name her son after me. It was one of the most humbling moments of my life. This past weekend I finally got to meet him. Say hi to my great nephew, Jonah Christopher! Such a cool little dude. He is almost 18 months and is so smart, he even does a tiny bit of sign language. Such a cool little dude!

Another humbling moment has been having my brother come down, for almost two weeks, and work himself ragged to give me a safe shower. Throughout the whole process, all I wanted was for it to be safe, so let me explain a little. There is a nasty side effect of the chemo I am on, that gives my feet and hands neuropathy.  Basically, they are numb, or feel like they are getting numb or in a state of pins and needles. It makes it hard to walk, as you cannot feel the ground. It is even worse with shoes on. If you have seen me walk recently, and saw how funky it is, it is because of the neuropathy. The best way to experience it, I think, is if you duct taped blocks of wood to the bottom of your feet and tried walking around. It is why I have an awesome cane, for the balance. Anyways, because of it, walking is frustrating, but steps up or down can be hazardous. Even one step. Previously, the shower we had, had a 4 or 5 inch lip you had to step over, and if you add water and numb feet, well, it is a recipe for disaster. Enter my brother. He listened to what we needed, added his expertise, and went to work. What we have is an amazing walk in shower that is comfortable and safe. Oh yeah, and he added heated floors and then extended them to the bench. Yeah. It is that awesome. 

Recently, I had another bone marrow biopsy. This time the went into my femur. I can happily report that no drill bits were broken. However, to date, it was the single most painful moment of my life. The humbling part though, was the doctors and nurses in the room were amazed that even though they knew I was in so much pain, I could remain completely still.  At the time, I thought it was best not to move thinking it could be disastrous!  I still feel pain in the bone, once in a while, but I am using it as a reminder that this battle is far from over, and if I can survive a little drill in the bone, I pretty much can survive anything.

And finally, my bride. Michelle humbles me as I observe her. She recently had a conversation where someone told her she was so strong. She declared, "I have to be!". Of everyone I have seen or met on this journey, I know that it is the hardest for her to go on this ride with me. The thing is, she IS strong. In every way. Physically, she has kept me from falling numerous times!  I am no small man at all, and when I need her, she is rock steady, every time. I have pushed away nurses twice her size, because they just aren't as reliable. Mentally, she has run a house, a store, appointments, finances, and does it all with a smiling face. Spiritually, she shows me every day that her faith can move mountains. She has never wavered, and never lets me waver too long.

I have my weak moments, but I see her and if Michelle can handle what she does, then I can handle Multiple Myeloma.

In Like a Lion, Out like a Lamb

      I didn't get around to writing a blog last week because we were in the midst of the bathroom remodel.   We are so grateful that his brother was able to come and was willing to share with us his skills and his time.    The bathroom turned about amazing!   It's hard to explain how much of a difference that having a shower where he feels safe will make.   It is a huge blessing, that has already added some peace of mind and relaxation to his life.   His sacrifice and hard work on our behalf is something we will think of every time we take a shower.  I've still got to finish painting and add all the finishing details, so you'll have to wait for a full before and after picture but here's a picture of Fred's amazing work.

      Aside from chemo, the main thing that has been on our appointment list was the bone marrow biopsy on March 1st.  They did it up high up on his femur and were able to get the samples that they wanted.   There isn't anything that they can do do to numb bone and Chris said it was the most pain he's ever felt, but they were astonished at how despite the pain Chris was able to stay still.   His last one was on Halloween, but he'll likely have to have one every three months.  
       The results have come back in we're waiting to hear from Dr Sborov the interpretation.  There are many things that they use to monitor his myeloma and many of them we do not understand, this is one of them.   The bone marrow biopsy has a few tests, one of them is called a FISH panel (fluorescent in situ hybridization).   "FISH can be used to look for specific changes in chromosomes.   It's very accurate and because cells don't have to grow in a dish first, results are often available within a few days".  (To read more about Myeloma Testing Visit Cancer.org) 

Here are a few of the things that come back on his FISH results:

1q21 (CKS1B)
9q34 (ASS1)
11s13 (CCND1)
14q32 (IGH)
15q24 (PML)
17p13 (TP53)

    Another test is called Immunophenotyping and gives us results involving these and many more:
%CD28
%CD200
%CD46
%CD45
%CD19
%CD20
% Cytoplasmic Kappa
% Cytoplasmic Lambda

     They say that being treated by a myeloma expert can make a very big difference in the life expectancy of someone with myeloma, now you can understand why. 

      It was nice with everything going on the past two weeks for me to also have visitors.   My parents were kind enough to come by and bring some tools that Fred needed.   I also enjoyed breakfast with my Aunt Shari the day of his biopsy.   It was something that we did before his diagnosis and it was so nice to have some "me" time.   My brother, sister-in-law and niece also stopped by for a short visit.   They had been sick, so didn't come in to visit Chris and it was wonderful that they were sensitive to the fact that Chris's immune system is weakened (and pretty much always will be) and didn't want to risk getting him sick.

    March also is Myeloma Awareness month.   It is represented by a burgundy colored ribbon.
      In 2017 there were approx. 30,280 people in the US diagnosed and approx 12,590 lost their battle.   In comparison Breast Cancer which had approx had 252,710 cases and 40,610 deaths.    (Cancer.gov)

    A year ago I don't recall ever hearing of multiple myeloma, now it has consumed our life.   It's a roller coaster full of emotions and while I strive to remain in control those emotions, I am always but one thought away from tears.   Our hopes and dreams for the future are simply that we have one together and that somehow Chris can beat the odds.   It's hard not to think of the many difficult things that may lay ahead of us, it's a terrifying road.  They often say to take things one week, one day, one hour, one moment at time whatever you must to make it through.  Myeloma is unpredictable and for me, someone who likes to be prepared, it's hard not to be able to plan, but part of being brave is doing what we must in the face of trials to survive.  It's letting go of the things we wish we could do and embracing what we can.  Yesterday Chris was feeling well enough to be able to run errands with me and enjoy some beautiful spring weather.   I treasure our time together.  Despite all of his battles he inspires me everyday and makes me feel so loved.

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.

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.

Regrets

      A year or so ago, Chris and I went for a drive and as we did we talked about life.  There was a lot to talk about as we've been through a lot in the past few years.   At one point in the conversation, he asked if had any regrets.  I think I probably took him by surprise when pretty quickly replied that I did.   I told him I regretted not taking more pictures.    Looking back on this year, it's easy to say that it's one we would want to forget but instead I'm grateful that I've done better at taking pictures as there are some that I was able to capture that highlight some of the most tender moments. 

     This picture was taken in January, the first time Chris was in the hospital.  It was a memorable trip as late at night he was transported via ambulance from the South Jordan up to the main UofU.  It was able to catch a rare moment of quiet where he was able to get some sleep.  All the machines in the background now in comparison look simple. 
       I've shared with those who have asked, some of the trials we've experienced the past four years while battling a brain tumor.   However, I'm generally a private person.   I posted this picture to Facebook along with some insight from an Ensign article I'd read comparing life to a card game where you never know what cards you will be dealt.  (Here's the article if you would like to read it.)  Putting myself and my feelings out there wasn't easy, but I learned from that post how many people care about us.  It gave me courage to share my feelings and thoughts when the next few "rounds" dealt some very difficult cards.
      As well, many who know me know that I'm an avid journal writer.   Almost 25 years ago I started writing in a journal each night, and have not missed a night in nearly as many.   It didn't start out as much and many days I don't feel I have anything profound to write.   However, it's given me lots of practice and is one of my most treasured possessions.   Writing in my journal, and now this blog is very therapeutic and helped carry me through many difficult times.   Had I not been in the habit of doing this during the simple times, trying to document the difficulties of this year would have been an impossible task.   Doing so has been a huge blessing to me, and hopefully also the lives of those around me.  Reading back and remembering all of the incredibly difficult things we have survived has helped give me the strength to continue on.

     In February we had the opportunity to attend the lantern festival for the company who Chris works for called "The Lights".  He was still recovering from pneumonia and struggling to breathe because of tracheal stenosis (we just didn't know it) and we really debated about going.   But we did and it was a magical moment.   Beautiful lanterns ascending to heaven with one of our favorite songs, "Hallelujah", playing in the background.   He mustered up the energy to come stand by me and put his arms around me.  Content in his arms, time stood still for a moment and life was peaceful.

      A couple months later at the funeral of my Grandma Beauregard, was another profound moment.  I was lucky enough to grow up around the corner from her and very close to my extended family.   Seeing everyone come together to support each other in a time of loss and celebrate the life of my Grandma made me realize how lucky I was to be so close.  There were many times in the hospital when they came and put their arms around me in support, and many times when I've sure my Grandma was watching out for me from above.  They also made sure that I had some happy memories on my birthday.  This past week we were glad to be able to make it to Christmas at Grandpa's, where I got to see most all of my family.   It was so wonderful to see all of them.  Chris and I were humbled when my aunt Shari got up and started talking about how each year recently they as siblings have collected and donated money to great cause.   She then proceeded to hand us a box with what they had collected and wanted us to have.  I haven't talked much about it, but as I'm sure you can imagine the financial aspect of an illness can be pretty overwhelming.   We've been paying our portion of the almost $600,000 billed to insurance this year, but with a new year resetting everything and chemo costing $12,000 a week I knew we would quickly be at our max again and the needed payment even bigger.  Because of their gift, and the gift from other generous people, it is going to allows us to pay off our medical bills from 2017.   A great weight has been lifted off our shoulders and it is an amazing way to be able to put a tremendously difficult year behind us. 

     The month of May ended up with an unexpected and extended stay in the hospital.   What was supposed to be a fairly routine surgery to open up his airway quickly took a complicated turn and a long day turned into a long night.  These picture were taken on Mother's Day weekend in the surgical ICU where we ended up spending most of the month.   Chris's sister Tammy and brother-in-law Mark had driven his Mom down from Washington so that they could be there for the surgery to stabilize his airway by adding a trach.  Because he was intubated and hooked up to so many tubes, Chris wasn't able to speak for most of that hospital stay, but just like a picture an amazing amount can be communicated with touch.   Looking at the picture of his mom holding his hand brings back so many memories of me doing the same.    I do regret that I didn't get more with other's who came that visit but I was also trying to do better at "living in the moment" so I'm glad I was able to get the ones that I did.

  This is just one of the amazing nurses who took care of Chris this year, Ian.   He was one of his first nurses in the ICU in May and was there at some very critical times, not just for Chris but also for me.  We've met many more amazing medical staff along the way, and I find a connection with them.   Just like with my job, it's not about what we do, it's about why we do it.  Being able to make a positive difference in the life of another is precious opportunity.


         This picture was taken in October, very shortly after we received the cancer diagnosis.  His brother Fred was able to arrange to stop by with his family on a flight back from a vacation in California.  Many of my family had been able to be a great support to both Chris and I during that difficult stay, but having his brother show up from out of town at such a difficult time was a priceless gift at a much needed time. 
    Our friend John got me a digital picture frame for Christmas which we have in our front room where we look at it frequently.   These pictures and many others that I've taken are loaded in it and each one that comes up reminds me of just how far we've come this year.   I've loaded it with pictures from his family in their "Team Chris" shirts as well as many of the motivational quotes from this blog.  It has the ability to load photo's into it simply by e-mailing them.  If anyone would like to send pictures to the frame, the e-mail address is:    Carlsson.Home@mynixplay.com   We've tested it and they are best sent one picture per e-mail. 

     So now that you've taken a short walk through just some of our most tender memories from this year  may you as you have some time to reflect your 2017.   And if you are one who is contemplating setting some goals for the coming year, may I offer a few suggestions.

May you consider:

Writing in a journal

Taking more pictures 

Living in the moment.   

     Whether you start in January or at some point in the future it's something that will be a treasure.  They've been something that's made a big difference in my life this year.



    Finally, as I've thought about the past year it's easy to question how we've survived.   The experiences we've had have pushed us to our breaking point many times.  But because of so many people around us being willing to share their love with us in so many different ways, we've had the strength to survive.  We've felt so much love that it overshadowed the challenges of chemo and dialysis and made for a very memorable and cherished Christmas.
     My love for those around me, and most especially my sweetheart, give me the courage to face the uncertainty ahead.   We've grown a lot closer this year, and I'm amazed at his ability to persevere and overcome.   He's one of a kind and even though together we've been through a lot, marrying him is still the best decisions I've ever made.

 

New Year's Resolutions

New Years is coming up and one thing I thought was how horrible 2017 was. I had pneumonia. I got tracheal stenosis, and needed a trach put in.  Days like today with 90% humidity, makes life miserable! Went through Stage 5 kidney failure. And finally diagnosed with a rare blood plasma cancer, called Multiple Myeloma. Pretty bad right?

But 2017 was also an amazing year. I got to spend a LOT of time with my beautiful bride. Sure, it wasn't all sunshine and rainbows, but I am sure I held her hand more this year than any year previous, and that is awesome! I forged new friendships that I will cherish the rest of my life. I reconnected with long lost friends and have a greater appreciation for those friends that are there for me, no matter the time or the day. I feel I have a great bond with family members that maybe, if it weren't for 2017, I would have taken for granted.

In 2017, I learned how tough I can be. Facing the real possibility of not being able to speak, not only did my ability to write clearly and without seeing what I am writing on prove valuable, I was able to communicate my needs, but then fought hard and taught myself how to speak with a trach.  Because of a doctor's comment that I had a hard time coming out of a surgery from the sleepy juice, I opted out of being put to sleep in, not one, but five procedures using a mild sedative, including having a drill bit break on my shin (twice!) and having then puncture my sternum for bone juice. And then, not being able to use pain meds, but Tylenol.

Also, in 2017, I witnessed miracles. Many miracles. I cannot talk about all of them, as I will cherish them forever, but one of the biggest has to be the Christmas Kidney Miracle. My goal in October was and has always been to be done with dialysis before Christmas, even with doctors, nurses and technicians all rolling their eyes at me. The Friday before Christmas, I went in for dialysis and they told me that because my numbers were so good, that I was going from a 4 hour session to 3 and that they are dropping me down to one a week. Sweet! Then as I was leaving, they said that depending on my numbers for the next week, they may turn me away and pat me on the back and say congratulations. Oh I hope that happens!

Anyways, my point is, that even though we go through a lot of bad, look for the good in all things. It makes dealing with the bad a heckuva lot easier! Sure, I have my bad days. I am not too proud to admit I might have cried more this year than many years in the past, but not all of those tears were of pain and agony. Many were of joy and humility. I do not think I will be able to thank all of you who have helped us. I wish I could.  But I do know what my New Year's Resolution is this coming year.  Though I know I have a storm ahead of me this year, I plan on being excited for the eye of the storm, to enjoy the peace and sunshine when it is there.