CyBorD

    Chris weighed all the options and decided to go ahead and risk the side effects of chemo without a  100% confirmed diagnosis.   It's still "presumed" multiple myeloma because the bone marrow biopsy is needed to finalize the diagnosis.  Starting the chemo before the bone marrow can also affect the results as it can start killing the bad cells and so be not quite as definitive.  However, his kidney's are still not doing well, and the longer we wait for the bone marrow biopsy, the greater the damage to the kidney's and the higher the potential that he will be on dialysis for life.  Because the kidneys are still struggling, he also did another round of dialysis, this one was 2 1/2 hours.  The drug regimen they are using has an acronym CyBorD.   He started the first chemo drug this evening (Bor), but started the steroid (D) on Friday.  They probably typically start them all at the same time, but the other drug will be added in later once it's official.

Cy - Cyclophosphamide (Cytoxan)

Bor - Bortezomib (Velcade)

D - Dexamethasone

     Because the doctors here rotate in and out, today was the last time that Dr Cho was his assigned nephrologist (Kidney Doctor).   The new doctor will be Dr Josephine Abraham.  Our first few interactions with Dr Cho were pretty tough as she was trying to convince Chris that he needed a kidney biopsy.   He had had enough of being in the hospital and just wanted to go home.  I'm pretty certain it was her who wanted to run the blood tests that caught the extra proteins in his samples and led to his current "presumed" diagnosis.  Yesterday he was tying to tell her he was sorry for being so difficult and pushing to go home.  She grasped his hand with her two hands and told him he had nothing to worry about and he had handled things better than she thinks she might have.   Then he stood up and gave her a big, tender hug.   

     Meet also another doctor who will be an important part of our life for quite some time.  This is Dr Douglas Sborov, he is the Hematologist (blood Dr) who is taking care of Chris.  (He said he didn't like the picture on the UofU website, so I made sure to find another one).   
     We only met him on Wednesday this week but have been comforted with his concern for both of us and all we've been through.   He takes all of our concerns seriously and has so much compassion for all we've been through.   We both feel like we are in good hands.  

     Last night was our first night at Huntsman and both of us got a great night's sleep.   The caregiver accommodations were a welcome change and I slept very well.   My brother also came and gave me a reprieve to the outside.   He came and picked me up (my car was being lame again today) and took me to his house for a shower, some laundry, some breakfast (for dinner) and most importantly cute baby snuggles.  It was an enjoyable evening.  Then he came with his tools to fix the battery cable that had simply come loose.  As we parted, he gave me a hug and whispered a few words, struggling to hold back tears as he told us he is praying for both of us.  

     Chris also had visitors while I was gone.   Reed and his friend came up from BYU and just as I was leaving his Uncle Adelbert and his wife surprised him with a visit.  Today being Sunday we also had the opportunity to participate in the sacrament in our room.  Thank-you everyone for all of your prayers, your encouragement and your love.  

     
     

Drained

    Saturday's are usually a pretty slow day at the hospital, so today I went to work while my aunt came and kept Chris company.   It was supposed to be a smooth transition of her coming and me leaving, but was complicated by the fact that my car battery decided to call it quits.  My aunt let me borrow her vehicle, and a good friend Logan is working right now to replace the battery.

      While I was gone they decided to do another, session of dialysis.  This time was in his room.  Dialysis is typically only 3 days a week, but they are still concerned about his kidneys so this was the 5th one since they put the tunnel line in on Monday.

      In the early afternoon, Dr Sobrov came in and talked with Chris.  He was supposed to be off this weekend but wanted to talk to him about the blood test results.   They came back but weren't able to confirm the diagnosis 100%.  They are 90% certain, but will need the bone marrow biopsy to be certain.   The bone marrow biopsy is scheduled for Tuesday, but it wouldn't be until later in the week when they get the results.  However, because his kidney's are still struggling and the longer they wait the more damage is being caused, they still would like to proceed and start more treatment tomorrow.  It is a shot that they would give once a week and would help destroy the mutated protein.   Obviously the 10% chance that they are wrong brings greater risks than if they were certain, so weighing the risks vs the benefits of both sides is something we will discuss and decide upon by tomorrow.

     He also was transferred to the Huntsman Cancer Institute.   He is in room 5540.   It is in the HMU section (a step down from an ICU room).   The room is beautiful and quiet.   The picture is taken from the couch, and I'm looking forward to being able to get a good nights rest.   However, the best thing about the couch is that for the first time in week's we've been able to sit side by side.  It's a blessing to be able to be so close to each other once again.  As I was driving back here and pondering the unexpected changes this week I realized that Huntsman is the place you never want to be, but are grateful to have arrived.

    It's been a very long week (month, and year) and much like my battery, we are both pretty drained.  Tomorrow should hopefully be a simple day with not much planned and we can recharge our batteries.   I tried searching online for a place where you can send a message to his room, but didn't have any luck tonight.  I'm planning to return home at least a few times so if you would like to send a card our address is:

10961 Sunup Way

South Jordan, UT  84009

    With this new diagnosis, many people have wished they could help.   Before finding out about his most recent diagnosis, I was looking for a comfortable recliner to surprise Chris with when he got home.   We both have been sleeping on the couch since last year when his problems with Tracheal Stenosis started and a recliner would help him to better get comfortable and get a good nights rest.  The ones that I thought would work were more than I felt comfortable spending.  Since things got more complicated this is the first thing I thought of that could help  make things easier.  If anyone is willing to contribute to helping us get a recliner we would be so very grateful.  Anything extra we can put towards his medical bills.   If you would be willing to contribute and use Venmo, our account is: @MACAWesome

      Depending on how things go with dialysis, we may also need help with getting him to and from dialysis when he returns home, or people to sit with him while I'm at work until we know more how he will react to everything.     If you would be willing to help with either of these please let us know, e-mail us at Carlsson.Home@gmail.com.

And So the Battle Begins

    The past two days have been exhausting and I'm very much ready to go to bed so no deep thoughts from me today, just instead an update.
     Today didn't really go like we had planned.   One thing we thought would happen today was that he would get a bone marrow biopsy to provide the information they need to determine the treatment.   We also thought that the blood tests from yesterday would come back and they would confirm for sure their diagnosis.  We also thought that with the confirmation, he would be transferring over to Huntsman.
      Nephrology wanted to do dialysis today and waited until about 2:30 to try and save time for the IR team to fit him in.  About 20 minutes after they started IR called and said they could take him.   Arrrg...   Near the end of his 3 1/2 dialysis today, Dr Sborov came and Dr Solomon came to talk to us.   They decided to start one of his treatments tonight.   A high dose of an IV steroid will hopefully start killing the bad cells.   He will be on it for about four days, and after that time they should have more information about the next step.  Chemo could likely start as early as next week, and then after some time for observation he could return home.  Our nurse did the first shot today at about 9:00.
      The results of his full body x-rays came back yesterday, and they were all pretty much normal.   There can be problems with his bones being weakened so that was good news. 
      Today we also said goodbye to two amazing people.   His nurse Eric and CNA Kayla.   Kayla is actually off for at least a month and Eric won't be back until Sunday.   He said he would call in on Saturday and find out if we were still here and make sure that he was assigned us if we are still here.  They both have done such a amazing job of taking care of both of us during these difficult times.
      A highlight today was a visit from his brother Andrew (Fred).   He showed up late last night and I caught up with him for a bit while Chris slept soundly.   When Chris needed some help adjusting, I got on one side and had him on the other, and the look on his face when he realized who was helping was priceless.   He came up again and was there while the doctors did their rounds.   They weren't able to make their standby flight, so he brought up Laura and Herbert.
      Another tender hug was the one between Chris and Dr Cho.  With about 5-6 other doctors/students in the room, Chris apologized for being so frustrated with her earlier this week and sincerely thanked her for continuing to search and find an answer.   I wasn't fast enough to snap a picture, I wish I had.

     
   

Close Around Me

     One blessing of the past few days is that Chris has been being cared for by a nurse and HSA who we are familiar with from previous stays.   They were put in our life at a previous time for a moment when we would need them more than ever.  Kayla who we met in May when she was his CNA both before and after ICU, and Eric who was in nurse shortly after his brain surgery.   They were his team yesterday and again today, and likely will be tomorrow.   His HSA last night, Alicia, was also amazing.   She knew how to help get him positioned in bed perfectly and he was able to get a really good nights rest.   She's here again tonight and already got him situated and he's been sleeping for an hour.

      Today the news is hard to share, and something that we didn't have a clue that would be the next difficult thing that we would face.    There are more tests being done, and we likely will know for sure tomorrow, but they believe strongly that he has multiple myeloma.   It's a form of cancer.   Today we met with Dr Soloman (the fellow) and Dr Sborov (the attending) from Huntsman.    Once the diagnosis is confirmed, he will likely be transferring over to their care.  My friend Rachel, who works at Huntsman assures me that his Doctor is amazing and we will be in very good hands at Huntsman.
   
      Multiple Myeloma can cause problems with the bones, so one thing that was done today was full body xrays.   It was a lot of work for Chris to stand and sit for all the imaging that they wanted to do, but he dug down deep and got them done.  Tomorrow IR will do a bone marrow biopsy to take samples to do testing including DNA.   Once they get the confirmation they need, they will start right away on treatment.   Rachel said that things will move very fast.

     The doctor that was able to help facilitate a bed last night came back to check on us.   She said it could be the "Happiest Worst Accident that Ever Happened".   Never could I have imagined that the scary problems with his eyes would lead us to this diagnosis.   However, her words help me feel like perhaps we've at least caught it early.

      One moment yesterday which is one I will always hold close to my heart came to mind many times today.   We sat face to face, forehead to forehead while he was in the dialysis chair.... the machine whirring right beside us.   Both of us pondering what we'd been through and where we currently were at.  The necklace that was a gift for our anniversary dangled around my neck.  He reached up and grabbed it, and caressed it with his thumb.  So much was said, with no words exchanged, in that tender moment.   The words engraved on it ring so true...

       Another tender memory not to be forgotten from today... Several times I caught him waving his hand as if to music.   I asked him what song he was hearing in his head.  Thinking he still had Queen in his head, but profoundly humbled by his response.   His answer:

Re-Set

     Chris's niece, Samantha, posted the picture to the right on her Facebook today.   I saw it as I was sitting in the cafeteria this morning trying to process the information we were given this morning.  They brought him down at 9:00 to start dialysis and while we were there his nephroligist (Dr Cho, the new one for this week) came in and talked to us.   She was new to his case on Monday and is trying to figure out the cause of his kidney failure.   We remember her running a test on Monday that was so rare that that ICU nurses didn't even know what it was.   Apparently she was trying to rule out something, and well, the test came back positive.    As well, she took as second look at his kidney ultrasound and his kidney's are much larger than they should be.   She wants to do kidney biopsy to find out more information and possibly run some tests on his bone marrow.  We really thought that perhaps after today's dialysis we would be finding out more about when we might get back home, and hearing .  We thought we had put the most difficult part of this stay behind us, and really want to "re-start" but seem stuck in an endless loop where we keep trying to make headway but are stuck in an undertow that keeps pulling us back down. 

       After I came back from lunch the nurse came over and told us that the doctors wanted to increase his dialysis from 3 hours to 4.   They usually like to start out slowly and gradually increase it (his first session on Monday was 2 hours).   The nephrologist, Dr Cho came back to ask if we had made a decision about doing the biopsy.   He's still trying to recover from some very painful sores that have formed and been aggravated over and over from not being able to get comfortable in a bed and has thus been sitting in a chair.  He said it feels like he's sitting on thumb tacks, that certainly can't be helpful to healing.  He's exhausted and not getting hardly any rest and keeps asking to just let him go home to heal.   She pushed us to make a decision and we pushed back trying to figure out a solution to him being comfortable. 

      The afternoon brought visits from several teams again, his favorite being Bruce from PT who has been coming to wrap the swelling in his legs.   It's nice when at least one part of his body that has been in pain is getting some relief and healing.  One other positive is that one of our favorite CNA's from our stay in May, Kayla, was assigned to be his CNA today.   She was his with us right before his first tracheal stenosis surgery and then again before he finally came home.   She takes good care of both of us and makes being here a little less stressful. 

      Finally, after two weeks of asking for a solution to a comfortable bed, we finally found someone to listen and he's resting at least a bit more comfortably.   Here's to hoping that he'll be able to get a good night's rest and tomorrow we can try to "re-set". 

Dialysis

     Last night ended up being a fairly late night with his first session of dialysis going from about 9-11.   All went well and he didn't really have any complications, and was actually able to sleep through about half of it.   Both of us got a pretty good nights sleep as well.
       Morning brought another round of dialysis.   This one a little bit longer.   They are starting out gently and working up.   During his treatment this morning the nephrology doctors came in and decided to try and have them increase the time of his treatment by a 1/2 an hour and also try and remove some of the excess fluid that has built up in his body by 1/2 Liter.   Things went well until right near the end when there were problems with his blood clotting.   It set off alarms which made Chris pretty nervous, but I know I felt a lot better that the machine was capturing them instead of releasing them back into his body. 
      We talked a bit with his dialysis nurse and found out she was from Peru.   When we asked why she became a dialysis nurse she talked about how she likes it because she's able to watch the patients progress.  Most times as nurse in a hospital you only see a patient for a short time, but with her position she often gets to follow many of them long term and watch them progress.  However, after talking to her a bit more, she opened up and talked about how several of her family and friends in Peru had kidney problems and did not have access to the care they needed and passed away.   She does this in honor of them.   As much as we wanted to avoid dialysis, I'm grateful that we have access to the care that he needs to get better. 
      There was a lot of back and forth about how much longer he would be in the ICU or the hospital in general, but in the afternoon we finally found out that they were moving him to the neuro floor.  Our nurse here, Leanne, has been amazing.   She's so patient and is the doppelganger for one of my old employees/friends, Laurie Jackson.  This room sadly views the same courtyard as the ICU room in May, but it's one step closer to getting back home. 


 

Is This The Real Life

      We made the tough decision on Friday to go ahead and do the procedure to start dialysis.  Over the weekend Chris was feeling much better and stronger, better than he has in quite some time.  Last night we discussed at length what today might bring and how we might proceed.   We were so confident that because of how he was feeling, he'd finally turned a corner.   So it was demoralizing to find out that his levels went up yet again.   His Creatinine which has a normal level range of .72-1.25, was at 4.27 when we got here and is now at 11.23. 

      Although the MICU team thought that it was best to do the procedure to put in what they need to do dialysis, just like Friday it's been a long day of waiting for IR (Interventional Radiology) to do it.   For whatever reason they didn't assign him a time and just put him as an "add-on".  They said it was likely only 1-2 hours away several times.  They finally took him back about 6:00.   It was a long day, a little too reminiscent of the endless waiting the night in May before his first surgery. 

      The procedure went smoothly and he was back in his room and awake about 7:30.   He was very concerned about being under anesthesia for yet another time this year, and we talked to them quite a bit before they took him down.  They asked him if He was actually able to do the procedure mostly awake.   It was great to have him awake when he came back into the room and that it was a successful procedure with no complications. He kept talking about how cool it was to be able to see and know what they were doing for most of the procedure.   And, when he started to get a little nervous, they asked what music he wanted.  He requested Queen. 

     It's now just a bit after  9:00 and the dialysis nurse is here and has him hooked up to the two machines that will perform the dialysis.   Today's session is only two hours, and there likely will be another one tomorrow.  What was supposed to not even be an overnight stay on the 5th has now turned into a long marathon where it feels like the finish line kept getting changed.  We still aren't sure when he will return home, or how long and frequently he'll need dialysis but at least this long stay in the ICU at least has an end in sight. We had hoped to avoid dialysis, but well... here we are. 

      I'm not sure what Queen songs played during his procedure, and many of you at the mention of queen likely have some running through your head.   I looked through some to see if perhaps there were any that fit my feelings today, there were several that were close, but these lyrics were the closest.

Ooh you make me live
Whatever this world can give to me
It's you you're all I see
Ooh you make me live now honey
Ooh you make me live

Ooh you're the best friend that I ever had
I've been with you such a long time 

You're my sunshine and I want you to know
That my feelings are true
I really love you
Oh you're my best friend

You're the first one
When things turn out bad
You know I'll never be lonely
You're my only one
And I love the things
I really love the things that you do
Ooh you're my best friend

Ooh you make me live

I'm happy at home
You're my best friend
Oh you're my best friend
Ooh you make me live
You're my best friend

  

Lionhearted

    During this entire ordeal, it's shown me how lucky I am to be led to such an amazing companion.  While pondering what I could say about this remarkable man on a day where we are waiting for things to improve, I kept coming back to the term "lion-hearted".   Not sure what that actually means,I did some researching and found a few descriptions and realized that it was exactly what I wanted.  

Strong 

        He has suffered so much pain and is so strong.  He is so brave and has immense power in him to deal with the external forces against him.     
     His body is covered with scars and his soul has taken a beating.  With all of the pain and anguish he's been through, he would do anything to spare the same pain for other's that he loves.   He's had far more than his fair share of challenges.   
      While here in the hospital, if a stressful situation ever pushes him to his limit, he's quick to apologize to the nurses for being grumpy.   He's also quick to say thank-you whenever they help him.  
     A  lion is able to take it down a foe using sheer strength and fearlessness.    Chris does his best to tackle his challenges the same way.  


Protective & caring 
     Lions are extremely protective.   However, they only get engaged when the prey is too strong or big.  
     Even in the darkest moments, his greatest concern has always been for me.   He frequently tell's me how sorry he is for all of the difficulties we've been through.  He is so tender and loving and does all he can to put a smile on my face.  Some of the most unforgettable moments have been when we've been able to stand together for a hug and just enjoy a simple moment of being close.  

      With the exception of potassium, which finally came in with a lower number, his other levels are all still going the wrong direction.   However, today he is physically stronger than he has been in quite some time and we hope and pray with the fiercest of desires that tomorrows results will begin their descent.    Emma from PT came today and was really surprised when Chris said he would be willing to try walking.     For the first time since we got here on the 5th, he left the confines of his hospital room.  He may have not gone far, but feel its a sign that he's turning a corner.  Avoiding dialysis would be our biggest hope and dream.  My sister in law was prompted to share a song today, and it had several lines that perfectly fit some of my feelings today.  (Que Mormon Tabernacle Choir Version)

To dream the impossible dream

To fight the unbeatable foe

To bear with unbearable sorrow

To run where the brave dare not go

To right the unrightable wrong

To love pure and chaste from afar

To try when your arms are too weary

To reach the unreachable star

This is my quest, to follow that star,

No matter how hopeless, no matter how far

To fight for the right without question or cause

To be willing to march into hell for a heavenly cause

And I know if I'll only be true to this glorious quest

That my heart will lie peaceful and calm when I'm laid to my rest

And the world will be better for this

That one man scorned and covered with scars

Still strove with his last ounce of courage

To fight the unbeatable foe, to reach the unreachable star

   

Waiting

     Since they ended up not doing the procedure need to start dialysis yesterday, we decided to wait out the weekend.   Thanks to the help of my aunt Roxann and our friend John, I was able to leave the hospital and spend some time on the outside.   It was a beautiful fall day and nice to feel a little bit of "normal" life even, if only for the day.

      With still the complex eye problem to fix, and all the difficult ones behind us, Chris and I talked and decided that finding opportunities for me to work when they are available is in our best interest.   FMLA can always be a safety net, but with Chris unable to work, losing both our paychecks would add even more stress to an already stressful situation.   Today I was able to go and put in a full day's work.  Going to work was a great break from life in the ICU.   My employee's were so excited to see me, and I them.   I even got to meet one of my new employee's who was hired while I've been gone.   Thanks to one of my co-workers/friends, coming to help my assistant manager out with hiring plans for next week, I was able to get an amazing hug from her and her kids.  There was a lot to do today, but I can tell how hard my employee's have been working.

     Chris also had a simple day with some different people to keep him company than me.   Several movies were watched and enjoyable conversations had.  John was even able to help rub Chris's back and help alleviate some of the pain.    Even though he's trapped here, today he was able to get some great medicine for the his spirits.

     As far as an update, all the levels that they were watching went up again today slightly.  The nephrology doctors updated today while I was gone, but he said that he can't believe that Chris is doing as well as he is with the levels that he has.  I can't recall the exact term Chris said he used, but I believe it was a "medical marvel".  People typically aren't able to have the high levels he does without it causing significant complications.  One of the tests he has Chris do is to hold out his hands out facing out and pointing upwards.   He calls it "stopping the bus".  Because he can hold them out straight and without shaking and moving all over it means he is doing OK.  I'm glad I asked what he was looking for when the test was done because it's something we can do on our own to have somewhat of an idea of if things are getting worse.

    One last development today is that they decided while I was gone to institute a new dress code.  Now when visiting we have to done plastic gowns and gloves before entering and wash our hands thoroughly before leaving.  They don't think he does, but as a precaution, the gowns are there to prevent the spread of a very contagious spore born illness.  Hopefully the test results come back soon, life in a plastic gown is rather warm.

Games of Emotion

    What a day!   This morning at nursing rounds we found out that his levels were up again.   So, we figured the Kidney and ICU doctors would decide it was time to get off the fence.  It was a bit more tricky than that because of the fact that it was Friday.   He still apparently isn't to the point where they feel it's an emergency, however because it is Friday our options were complicated. 
     Option "A"  - Go ahead and take the plunge and do the things that need to be in place to do dialysis.   Essentially make a "port" (not the technical term but it's the one that I feel describes it best).  The "port" will be where they connect him and his blood to a machine to filter his blood.   It will take blood out, clean it up and then put it back. 
     Option "B" - A bit more risky, wait some more and see if things improve.  The "port" that they would be putting in would be used for at least a few weeks or months.   With it being the weekend, the people able to put in the more "permanent port" would likely not be here, and so they would have to do a more basic one and then go back in later and make it more permanent.

       We asked them to get the plans in place to do the procedure today while we decided for sure, they said that if we decided not to go ahead they could cancel them.

      After much discussion we decided to make our own plan with a mix of the two.   Get the port placed today while it was at the safest, and then wait until tomorrow's labs to see if things improved before doing the actual dialysis.   This would also allow the dialysis to be done during the day while our nephrologist was here instead of trying to do it tonight.

      Everything seemed to be going OK, there was a bit of a question of who would do the procedure.   Either interventional radiology or a vascular surgeon.   They put him on NPO (No food or drink) and then several hours later we found out that it was for not.   They weren't able to work him into either surgery schedule and instead want to try for Monday. 

       Thank-you to all of my family coming at just the right time to give a well needed hugs and  shoulders to cry on at times when difficult decisions were made and discouraging news was shared.

     So here we are... stuck again, feeling like we've been the pawns in an cruel game of emotions.  Making such a tough decision was difficult, all for nothing.   Tomorrow we just hope that we wake up with the good news we thought we might hear today.