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.

Gifts of Christmas

      This quote from Hank Smith is one that I've pondered this Christmas season.    We've been so touched by the many people who have reached out and with simple and thoughtful gifts have given us so much more than just a gift to unwrap, they've brought love, compassion and joy.

      However, his quote is especially meaningful for us today as just yesterday we received one of the greatest gifts that we wished for but could not be purchased.   At dialysis we were told that his kidney's have recovered function.   We no longer have to spend Christmas Eve in the dialysis center and pending a couple test results next week, he could be done with dialysis by the end of the year!    Very few people are able to recover from such his level of kidney failure without a kidney transplant, and we started chemo without the 100% diagnosis in hopes of saving his kidney's.   We took a step into the darkness hoping for light, and have been given an amazing ray of sunshine just in time for Christmas.

     Not only have we been blessed with the gift of recovering kidney's, but we also heard from Dr Sborov.   One of the tests that they run to measure the myeloma is a blood test that measures something called Lambda Light Chains.   Normal range is .57 to 2.63.  When he was diagnosed, his were 323.    Now, approximately two months after starting chemo they are 4.67.   When he messaged to let us know the great news, he said it was a "Christmas Miracle".   We know that there is a wild and bumpy ride ahead and the coming years will be tough, but it's a huge blessing to know that for now our battle plan is working.

       So, with Christmas Eve just moments away, from our house to yours, we wish you a most enjoyable holiday filled with amazing memories!

     

   

Week 9: Shirts, Singing, and Smiles

I am going to try and paint a picture and see if you can feel some of the emotion that I have felt in the past few days.

On a Friday, I was riding home from dialysis with a really good friend of mine (Love you Logan!), and we were having a conversation about something most likely about traffic. The thing about dialysis, is it is really draining on me. And this particular day, was a little rougher than normal.  Poor Logan only sees me after my treatments, and subsequently, at my worst moments outside of chemotherapy days. I remember it was about 4PM, hence the traffic complaints, and I received a text. This particular text chain has my Mom, oldest Sister, Tammy, oldest Brother, Andrew (Fred), and my beautiful bride Michelle. And this is what I receive: 

It is a picture of my brother, Andrew, my Mom and my Sister Alex, whom I haven't seen in a few years. I thought, oh that is nice, but then I caught the shirts. I had to zoom in to read them and that's when I started tearing up. Now, this was mid conversation with Logan, and I went quiet. It took me a few minutes, but I explained to him what just happened. His first thoughts were, I need one of those shirts! Team Chris! Haha! 

The next couple days was a flurry of text messages as my brother visited all my family and my older Sister had her little family send me texts of each and every one of them wearing the shirts declaring which team they chose. Image after image coming in still makes me misty, as some of them I have never met. I hope that changes in the near future. 

Another emotionally filled night was a couple ago, when Michelle mentioned that a friend of hers from work was coming over with her family. I was all about it. I like getting visitors, so we were waiting and chatting when the motion detector goes off on my doorbell. Yeah, it's a thing. I see everyone who walks by. So I open the app to make sure it is her friend, when lo and behold we see a large group of people assembling. I looked at Michelle, and was quizzically looking at her saying, are you expecting anyone else? She had the same look, so I clicked the sound button on the app, and we heard them singing! Oh my goodness! Carolers! Since it had been forever since I could remember what to do about carolers, I looked back at Michelle and said,"we probably should go open the door!"

Here is the video of the first couple songs, so cool!

I hope it loads okay, but man that was fun! After singing, they started bringing loads of presents and even stockings. I was speechless, and getting tired, so I had to go in as they were loading Michelle up, but wow, so much fun. 

Health wise, I am looking for the Christmas miracle, as I have no intention of letting this beat me. Last Monday I finally met with my kidney doctor at dialysis, and as my creatinine keeps coming down, I asked her what level it needed to be to get off dialysis, and she replied with "in the 2's". I was currently sitting at 3.13, and knew I could rock the 2's but not sure how soon. Fast forward to Wednesday, and I go in for chemotherapy. They do blood tests each time and for some reason I was really nervous. But we get the results, and my creatinine was 2.18. Not only did I hit the 2's, I freakin' CRUSHED the 2's. 

So to explain creatinine levels, a normal person with normal functioning kidneys has creatinine levels between 0.7 and 1.25. When they tested mine back in the hospital in October, they reached as high as 11.29. Well over Stage 5 Kidney failure, though they still functioned and stuff. I truly was a medical mystery. Anyways. Getting to 2.18 this fast and hitting my goal, truly is a Christmas Miracle, and I am so thankful for the prayers and hugs from everyone. It was a lot of work, and I am know that I have a ways to go, but if I can get rid of dialysis, what a milestone!  

Anyways, as I sit here, waiting for my brother Andrew to show up from Montana, and watch some football this wintery Sunday, just know how appreciative I am of all the visits, hugs, handshakes, fistbumps, shoulders and arms to lean on, phone calls, text messages, Words with Friends Games, Christmas presents, likes, loves, Wows, lols, and cheers that you have given me. 

Oh and for those wondering, I am going to try and get to Star Wars on Monday.  If you spoil it for me, I will find the strength to come visit and hit you with my lightsaber. Yes, I have one. Don't do it. 

Greatest Gifts

     This week on Tuesday we were surprised when instead of a friend from work and her kids, a large group of people showed up in the cold fog singing carols.   Not only was it my friend and her kids, but several other managers, members of their families and my old manager and friend Holly and her husband.

     This time of year is crazy at work, and I know I feel like it's a never ending and exhausting battle to keep ahead of all of the boxes of shipment all while helping customers find meaningful gifts for their loved ones.  Having them take the time out of their very busy lives to bring some Christmas spirit was the highlight of our week.

      After they finished singing, they then proceeded to come up and shower us with some very thoughtful gifts, and embrace me in many hugs to let me know how much they cared.  As one friend said their hope was to shine a light on the love everyone has for us instead of what's happening to us.  They very much succeeded and we both felt very loved and uplifted.  I'm so grateful for Edie who organized it all and to those who came (or were there in spirit but unable to make it).   She said it started so simple and quickly grew.   I'm so blessed to work for a company with so many amazing people. 
   
     With chemo on Wednesday they asked at the last minute for us to come up to the main Huntsman.   The neuropathy in his feet has been making it increasingly difficult to walk and the constant tingly feeling also makes it hard to sleep.  They wanted to check on it and are concerned.  It is a possible side effect of the Bortezomib (Velcade) shot and they decided to skip the dose this week.   This is the last week of the current cycle, so depending on blood tests next week they may change his dosing.  It could also be a sign of lesions in his bones which is a common problem with myeloma.   The x-rays they did in October gave them a small glimpse, but they really want to get a CT or MRI.   His kidney's can't handle the contrast plus his wide shoulders and trach has make getting the needed imaging difficult.

      Good news however from his blood work this week is that his creatinine levels are down to 2.18, almost a full point from last weeks 3.13 and the lowest they've been since they originally caught his kidney failure in October.  Normal range is .7 to 1.25 and at his peak it was 11.23.

      We are very hopeful that his kidney's are recovering and an end to dialysis is on the horizon.  With all that he's battling, having one medical challenge respond to treatment and improve is a priceless treasure. 

     With so little time until Christmas, and a lot on our plates next week, I wanted to make sure to express my appreciation to each of you.  I couldn't have survived this difficult year with out the friendship, support and encouragement of so many around me.  Thank-you sincerely for surrounding me in the trying times and lifting me up when the days are difficult. 

      May this Christmas you all enjoy a beautiful holiday and make many priceless memories.  Give those in your life an extra hug, and love deeply. 

Cancer Cannot Silence Courage

     It's hard to believe that it's already a full week into December, Christmas will be here before we know it!  Christmas is one of our favorite holiday's and I was worried that with everything going this one would be hard.   However, even though we've been busy we've both been able to take time to relax and recover at night and squeeze in some Christmas activities.   With the help of John our house is nicely decorated.  For the first time in several years, we have a Christmas tree up, lights outside and festive decorations inside.  Seeing our stocking holders spelling "Joy" on the mantle has been a good reminder for me to to seek it.  It's been fairly easy, and we've been very touched by the thoughtfulness of others as gifts have been arriving secretly on our doorstep.   We've both been very touched by the support of others this month and it's helped bring joy to our lives. 

     The results of Chris's biopsy last week to check for Amlyoidosis came back.   From my research I had learned these amyloid proteins can build up in different organs (heart, kidney's, liver, intestines, nervous system) causing many complications.  A positive results could also cause problems with doing a bone marrow transplant, exclude him from clinical trials and shorten his life expectancy.  The worry about his results was lifted yesterday when we found out his was negative.  Approximately 10-15% of myeloma patients will have symptoms of amlyoidosis during the course of their disease, so it's something we may have to battle in the future, but for now we are grateful for the negative result.

       This week was the second week of only 2 dialysis treatments.   The dialysis center last week was concerned about his creatinine levels being higher and wanted to change back to 3 times a week, but we insisted that they "compare apples to apples" and use two tests of being off dialysis.   This week his creatinine was lower than two weeks ago and headed again in the right direction and over a point lower than 4.27 it was when he was originally caught in October.  It's a good sign that his kidney's may have been spared by starting the chemo when we did. 

     The good news of both tests results is a huge blessing because  Chemo is really starting to take it's toll.   We were told originally that he wouldn't lose his hair, but it's been falling out pretty consistently the past week or so.   Apparently a side effect because he is on such a high dose.  The chemo is also making him weak and tired, but he often has a hard time sleeping.  Neuropathy is also a side effect and he's starting to have numbness in his fingers.  It was one of the side affects were were warned about, and our doctor isn't too concerned.  It's hard for me to see him suffer, and he strives so hard to put a smile on his face, but some days the pain and anguish can't be hidden.   But sometimes I'm able to offer relief with the gentle touch of a hot (or cold) rag and am rewarded with a smile that melts my heart. 

      Today while our good friend Logan was bringing him home from dialysis we received texts from his family in Washington and Montana which was so much more than just a picture, but instead the immense feeling of love and support.   It's almost as if they were here giving us a hug and it brought both of us to tears.   They have made shirts that say:

Team Chris

Our Iron Man doesn't fight alone...

Cancer Cannot Silence Courage

Week Seven: Weakness and Strengths

As the weather turns cold and snowy, I am reminded that with Myeloma, I have this tube in my wind pipe. The humid cold air causes condensation and build up with in the trach and causes me to cough, a lot. I have to remind myself that I am still new to this as well as dealing with all the other battles going on. I bring this up, because I find myself unable to sleep very much. It is not uncommon to have a 3 or 4 hour night, and then nap a couple times in between visits, appointments, and time with friends and family.

One night, a couple nights ago, I was up at 4 or so, and was surfing the TV, and came across a Hallmark Christmas type movie. You know the ones, I think they said on the radio once that this year there are going to be like 40 of them! Anyways, as I eye rolled, I found myself putting down the remote. My thought was, maybe I will be bored out of my mind and fall asleep. Now I did doze on and  off but as an expert TV watcher, I was still able to guess/follow the predictable story. Anyways! There was one line in there, and I am paraphrasing, but it said something like this about prayer:

God hears all prayers, but he earmarks the honest ones. 

I frowned at the statement. Aren't all prayers honest? But then I started thinking, when you go through the motions, are you being honest? Do you really want to "bless the hands that prepared the food"? Of course, right? But what does that mean? I am extremely guilty of "going through the motions" prayers. Some times it is just too painful or shameful to ask for what I need. I found that the sincere and honest prayers, were ones I kept to myself, but if I ever prayed in front of others, I said the scripted one I grew up with. Was I embarrassed?  My goal is to have as many honest prayers as I can. I feel I may have wasted many prayerful opportunities.

A couple things have happened these last couple weeks. My kidneys are working great, so, on a trial basis, they dropped me down to two dialysis trips a week. Mondays and Fridays. What a blessing this is! In turn, since my chemotherapy days are Wednesday, they moved my infusion appointments out by the center by my house! My commute and hospital time on Wednesdays dropped from a 7 AM - 6 PM ordeal with an hour both ways in travel to a 3 minute ride and a 3 hour visit. So much nicer. Although this week, because I haven't had a break yet from the chemo, I have become anemic. And this week, I have to have a blood transfusion. So that will add a couple hours to the week.

I brought up prayer because it has become my security blanket. Each week of chemotherapy is getting harder on me. I can feel it. It is becoming harder to keep my smile on my face. I feel myself getting weaker, and for someone who has always been strong, physically, mentally and spiritually, it is becoming harder and harder to be. But I hold to prayer. And I have seen it work, in the few short weeks. I am realizing how important every interaction I have with people is becoming. I want to make the most of every visit. I have always had a fear of appearing weak, and this whole hurricane of health issues is making it really hard to be strong.

Anyways, with no break in chemotherapy for another 4 to 5 months, I find myself pondering and praying more than ever. Thank you all for your prayers. I know Michelle and I are astounded at how we have made it this far, and we worry about the future. But having God and Family and Friends to lean on is becoming a highlight in our nightly talks before bed.

Thank you.