There's No Place Like Home

     It was a very long day, but we are both so very happy to finally be back at home.   It took a lot of insisting that keeping him in the ICU because they still can't figure out how to set up outpatient dialysis was not in his best interest.
      We meet back on Monday with Dr Sborov where we are hoping the bone marrow biopsy results will be back and we'll learn more about his particular case and what his plan of treatment is. 
      There's still a lot to do, but for now the most important thing is sleep.
     

Psych!

     This morning it sounded like Chris would likely be going home today.   Our previous release day's from hospitals have never gone all that smoothly, so we didn't get our hopes up.  We asked multiple times to talk to the case manager to find out more information about when it might happen, but they would never come in to visit us.  His primary team (BMT) said that they didn't have any concerns with releasing him, the hang up was the hematology team trying to get dialysis figured out. 
       In the afternoon someone came in and told us that there was no one in the valley who could do dialysis outpatient for someone with a trach and that he would need to be transferred to a long term care facility.   It was heartbreaking and frustrating that it was the first that had ever come up.   We were sure that there must be another way.   Dialysis will likely be 3-4 days a week for 4 hours at a day, that spending the rest of the week in a care facility seemed unnecessary.   We asked to talk to the kidney team to see why this was only now being discovered.
      Since it was obvious he wouldn't be leaving tonight, I went to work for the evening.   Chris was able to push for answers and find out that we were given wrong information and that there is a place in Sandy that will be able to do his dialysis.  They just want to make sure that Chris feels like that will work, and so I have to go tomorrow to check it out and give the OK.  I can't even imagine how that got mixed up, but it was a cruel miscommunication.
      So here we are still "living at the hospital" as good friend so adequately put it.  Hoping that tomorrow he may be released and be back at home.   The weekends at a hospital are always a little bit slower, so we won't hold our breath.
      Roxann showed up for a visit shortly after I left, and Chris had a nice evening.   His nurse from last night is here again tonight and the pain meds are helping with his leg so hopefully he'll be able to sleep.

Sore Leg, Pain Meds and Visitors... oh my!

Multiple Myeloma

Chris posted a little about his diagnosis in his post earlier this week, but I had started collecting information and tonight seemed like a good time to add it to my blog.   We'll probably have more information about his specifics sometime next week.  Once we are released from the hospital I still plan to update the blog, but it likely won't be a daily thing like it has been.   There is a subscribe option in the upper right hand corner if you want to know by e-mail when one of us posts.

Multiple Myeloma is a type of blood cancer.  There are two other main types of blood cancer, leukemia and lymphoma.   Of these three it is the 2nd most common.  It occurs in the plasma cells inside the bone marrow.  Plasma cells are white blood cells that produce disease and infection fighting antibodies in your body. Myeloma cells prevent the normal production of antibodies, leaving your body's immune system weakened and susceptible to infection.  It can cause bone lesions which destroy and weaken the bones.  

It is not considered curable, but often is something that can be managed as a chronic disease.

It is treated primarily by a hematologist (blood doctor), but usually also involves other specialists.

Most people diagnosed are older than 65.

Men are more likely to develop it than women.

The odds of getting it are approx .67%

Tom Brokaw was diagnosed with Multiple Myeloma in 2013 and has written an autobiography called "A Lucky Life Interrupted"

                                     Typical Day

     Today ended up being a pretty average hospital day.   The pain from his bone marrow biopsy made it hard for him to sleep last night, but they did their best to treat the pain.   The pain meds would work really well at first but quickly wear off.
   
     This morning started with another round if dialysis, this time with one of the techs that he really likes, Ryan.   Ryan is young, but very experienced.   His father does dialysis at home and he has been helping his dad since he was 7.   His mom is also a tech in the dialysis department. 

     During dialysis had a visit from the nephrology (kidney) team.   They are happy with how is he responding to dialysis and were going to work today to set him up on dialysis outpatient.  Outpatient is usually only 3 days a week, 4 hours at a time but they can increase it to four if they need to.  Then shortly after had a visit from the BMT (Bone Marrow Transplant) team.   They are currently his primary team simply because of balancing patient load in the hospital.   They gave us the good news that they think he is stable enough and can probably go home soon.  The mentioned tomorrow as a possibility, but we've learned that hospitals are usually horrible at predicting so we'll just have to see how things pan out.  It seems like ages ago that we arrived and so much has changed.   Getting back to the comforts of home can't happen soon enough.

      Today he had several visitors.   First a surprise visit from his uncle Adelbert.    Then this evening a visit from my uncle Alan and aunt Teresa.   While they were visiting we also had a visit from some members of our church.  It was the end of two long, tough and painful days and the visitors were a great distraction.   The nurses were also finally able to work with the doctors to come up with a better pain solution, and our nurse from Monday (Brittney) is here again tonight and promising to make sure he gets them on schedule so he can get some good sleep. 

  

Finally...

      They have been trying to get Chris scheduled for a bone marrow biopsy since mid week last week.  Yesterday we thought it was a for sure thing as it was listed with a scheduled time in his online UofU medical account.   They called and told us they would be up in 20 minutes, only to then have to turn around and tell us that there was a problem with the orders and there wasn't anyone that could do it.  After things fell apart yesterday, today they told us it would happen between 10 and 11.  The bone marrow biopsy finally happened in the mid-afternoon. 

     When Dr Sobrov who has been off for the past few days came in he asked is how it the biopsy had gone and was also frustrated that it hadn't happened.  He's planning his treatment off the results, so the delay means more agonizing wait time to know what the next step will be.  The doctor filling in for Dr Sobrov didn't seem to care about our frustrations with it being delayed again, so it was a huge relief for both of us to see Dr Sobrov in the doorway. 

      What was supposed to be a 20 minute procedure took 2 hours.   Chris's bones are so tough that it was difficult for them to drill through, the tech doing the drilling said it was the strongest shin he's ever drilled into.  Chris said they broke two drill bits trying to get through the bone.   Trying to avoid any more anesthesia this year if possible, he did the procedure awake with only local numbing and some IV pain meds.  They wanted to get 10 cc's of bone marrow but even with trying to scrape around (ouch!), they were only able to get 4 cc's.   Hopefully that will be enough to get the results that they need, doing another one anytime in the near future is not in his wish list.   He said it was the most painful thing he has ever done in his life.

       Even despite the amount of pain he is in, he still is so kind and patient with the nurses.   When I got back from working a partial day at work, he made sure to put a smile on his face.   When the nurses and aids were helping him get into bed from the couch.  He would sincerely tell them "thank-you".  The look on his face when they perfectly positioned his pillow was priceless! 

       Because of shift change, it took a while for them to get in contact with the doctors to be able to order pain meds, but they finally brought them in and he's all tucked in and peacefully sleeping.   Today as I drove to and from work I had some time to think, I realized how much has changed so drastically in our life in the past week and a half.   A week ago on Monday we were terrified about starting dialysis, and here we are at a new hospital and already started chemo.   The chemo has made his entire body ache and today's procedure added to that pain.  May my gentle courageous lion be comforted when he does his best tomorrow, even if the best he can do is get out of bed.

Back to Back

      Last night when I got back from work, Chris was on dialysis.  A little while after finishing dialysis they started the final part of the CyBorD regimine, Cyclophosphamide.   It was given as an IV drip over an hour.  Seeing the precautions that the nurses had to take just to inject the medication was a bit terrifying. There's now another special large garbage can in our room clearly marked with a sticker similar to the right.  As well as a sign on the door reminding them to take the necessary extra precautions. 

     This morning in order to have it done in time for the bone marrow biopsy, they did dialysis most of the morning.   This one for four hours and removing about 3 liters of fluid.  The two rounds of dialysis almost back to back left him tired so he slept through a good portion of both of them.  One of the doctors yesterday said that there is typically about a 50% chance of restoring kidney function.   Not the best odds, but not the worst either I supposed. 

       His bone marrow biopsy that we've been waiting for, fell through yet again.   It was something they had planned to do Friday but weren't able to make happen and then because of the weekend the team that would do it wasn't available until today.   We thought that things for sure would happen because it was an official time on the schedule not just an "add on".   When things were running a bit behind we asked for an update and they said that someone from transport would be up to pick him up in about 20 minutes.   However apparently there was an error in entering the procedure and the people who could do it were already in another procedure or already gone for the day.  Our nurse today had worked so hard to get everything lined up so that he would be ready.  So frustrating!  They promised they will get him in in the morning tomorrow, but it's very likely even if they do, the results won't come back until next week sometime. 

      One thing that has been really nice about being here is the food.   From 7 AM to 9 PM we can call and place a food order at any time.  The funky taste in the food is doing better and he's had some pretty good meals the past couple days.  I've always thought I would be living the life when we could order room service, I always imagined it in a hotel not a hospital.   However, being able to order food for myself and eat with him is a very nice luxury. 

     

Week One - The Burgundy Lion

(I thought I would pitch in on the blog once in a while. I am not as elegant as my bride, but it can be therapeutic, I heard.)

The diagnosis at this point is that I have something called Multiple Myeloma. It is a cancer of the blood plasma, that infects bone marrow, bones, and other tissues if left alone. The ribbon color is burgundy. March is Multiple Myeloma Awareness Month. There is no cure but if treatment is followed, the chances are good of a long life. Just takes work.

So I first heard the term Multiple Myeloma as a "slip up" by a different doctor. I hate that it is so hush hush at first but I understand why. My other thought was uh oh... they said "something something-OMA", that means the C word.  I didn't want to say it or hear it. In fact I don't think I heard a doctor say it out right until they said I would be moving to the Huntsman Cancer Center.

I think I was still in shock because I don't think it really hit me until last night, Sunday night, when I got my first chemo treatment. Chemo was my trigger word apparently, and pure dread and fear came rushing in.  The whole time I was waiting for that shot, I realized I was just bemoaning dialysis. Which is a whole lot easier than the chemo, as weird as that sounds. Also, the dumb nurse who injected it.. good lord, anyone who knows me knows I have like a 100 acres of fat in my belly and the guy shoots straight to my muscle.

Anyways, time to embrace the new normal and pick up my weapons to fight the battle. One thing I told Michelle is we are not turning away any help. There is  too much to do. We will figure it out in time.

Michelle first tagged me as a Lion during this latest hospital trip and at first I was thinking, TIGERS ARE SO MUCH COOLER! But I realized the Lion is the animal I will strive to fight like. One particular trait I like is that they are aggressive when they need to be, and right now, I need to be.

~Chris

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: