The System Is Broken..

I had a phone call today from one of my doctor's, office. They were calling to tell me that my doctor, wanted me to see a different specialist than the one I was currently seeing. And after a long conversation, longer than the office worker wanted, I am sure, I said no, I will be sticking with my current doctor, and if they need a more in depth explanation than they can call me themselves. And their reply was I am sure they will. And the conversation was over... admittedly, one that lasted 11 minutes and 38 seconds, I knew the actual doctor one is going to be many more minutes than that.

But here is the kicker, at least one part that is really bothering me, anyways. One of the reasons they wanted me to move to a different specialist, was because the current one I am seeing wasn't in there system. For example, say.. my doctor is with Springfield Hospital, and the current specialist is with Shelbyville Hospital, they wanted me to move specialists to Springfield because that was their system. So I was going to have to give up a very good doctor, whom I have built a rapport with and been through a lot with, to start over, with another specialist just because it was convenient for them. Well, their system anyways.

See, even the great Homer Simpson knows that there is the Internet on computers now.  And that the whole foundation of it is to send information across SYSTEMS with relatively ease and speed! Now I am sure there are those of you that have a problem with sending "confidential" information over the internet. Honestly, if I was worried about that, I wouldn't have changed my Facebook posts to public, and nor my Blog posts. You see, what I edit, happens before it is even written.

And sadly, it is not just hospitals. Do a search in your prefferred search engine, and you will see how many systems are broken, at least in the opinion of the reader ,or the writer.. or even the artist.  You can hear it and read it daily about how the "Springfield police department" and that "Shelbyville police department" didn't help someone because it wasn't in their district or they were off duty. Okay, maybe not daily, but man, by all the posts on Facebook, you would think there is! Again, edit before they write, amirite? (or is it "Am I Right"?)

You could almost wonder if I am all about openness, why am I not saying names of doctors and assistants and hospitals (or police departments), well, because I do not want YOU the reader, to think I am getting a less than stellar treatment plan with my current doctors and assistants and hospitals, and there are even some others who think my opinion matters much to the point it might make you second guess going to a doctor with that assistant or that hospital. You see, I am protecting you, not the other way around. You are welcome.

A Moment... A Day... A Lifetime

     It's been a couple months since I blogged, there really hasn't been much to pass along.   Next week he starts his 12th cycle of DRd (because how the weeks have fallen, the 3rd already this year).   They  have slightly lowered his daily chemo dose which has been a nice change.   The lower dose is a bit easier to tolerate and doesn't make him fill quite as crummy.   However even with the lower dose the week he gets off still does make a big difference.   Cancer has changed our lives, and it's hard not to long for the life before.   When things were... easier.   When there was more time for fun and wasn't filled with doctors appointments.  When we could plan ahead more than the current moment or day.   We are grateful that this chemo is working and hope that it will for a long time.   This is likely as good as life is going to get for now, and we try to make the most of it.

      For the past month or so Chris has been battling an infection in his leg.   It's been very painful and continued to get worse.   Chris said it feels like he's been growing a horn.   His leg has been very swollen and tender.  The infection finally settled into a large bump on the front of his shin.  I've stepped up in my nursing duties and with a strong dose of antibiotics it's finally starting to mend.   It's like someone ripped the horn off and left a gaping hole that's trying to repair.  For someone who used to pass out at the sight of blood, I've come a long way.   As Mary, the APRN who works with Dr Sborov said "Healing is Gross".   I agree!  But it's also amazing.     



    One thing that's been on my mind lately is our interaction with people and how they make our lives better.   The nurses at both the main Huntsman and the Daybreak location have become like good friends/family.   They are more aware than even normal friends because they know the nitty gritty details of all that you are going through.  One of Chris's favorite nurses is finishing the end of his training and sadly was won't be around anymore.   When I asked Chris why he was his favorite, he said that it was because Jason made him feel like a person and not patient.   He would ask the medical things he needed, but also took a little bit of time to get to know him on a personal level and would even talk video games with him.   He was better than others at accessing Chris's port.   Chris deals with a lot of pain, so the fact that Jason can spare him some is a blessing.   .   At one point when there was a choice of "fun bandaids" he would always save the poop emoji ones for Chris.   Cause well, having cancer is crappy and a poop emoji bandaid represents that.   Jason often went the extra mile to make sure that Chris felt comfortable and we both appreciate it. 


      Another person who has also made a big difference in our life is our friend John.   John has sat with me in the waiting room for multiple surgeries and been with both of us through some very difficult times.   He's rescued the day many times by bringing food when both of us were too tired to do anything.   I sprained my ankle a couple weeks ago and thanks to John I was able to spend the weekend with it kicked up on the couch.   He's lived with us or very close by the past couple years and made our lives a lot easier.   He's always surprising us with treats and trying to make us laugh (although for those who know him... he has a different sense of humor).   He's starting a new job in Wyoming in a couple weeks and we are going to miss him.

    We're also lucky to have another good friend, Steve.   He is no stranger to heartache and has come into our life at a time when it was needed and it feels like we've been friends for ages.   He has a knack for showing up just when needed.   About two weeks ago when the pain is Chris's leg was unbearable, he showed up on our doorstep with headache medicine (aka Dr Pepper) and his two sons.   He provided the sacrament for Chris as well as a priesthood blessing and then he and his sons talked Star Wars which was a great distraction.   He often brings Chris lunch and his friendship has been a huge boost to Chris's morale.   We're both lucky to have him nearby and are grateful for his ability to sense when he is needed and come to help. 

      A couple weeks ago I was taken by surprise when my boss of many, many years suddenly decided to move on to move on to new adventures.   When I think of one word to describe him, it's compassionate.    He's helped me in a lot of ways, but one way for which I will always be grateful was that at a time when I needed it more than ever, he helped me better understand how to balance the priorities of a work and family life.     When Chris was diagnosed with a brain tumor, he was one of the first people I told, after which I sobbed all the way home.   So many times since then when life kept getting harder, he was there to check on me.   I'm so grateful for all the ways in which he has lifted my burdens, and he is already missed greatly.   He's been in my life for "many moments" but impacted me for a lifetime.   Because he wasn't just a co-worker, he's also a friend and in his wise words "the best part of friendship is jobs didn't determine friends".   

    The quote I started the blog with really is true.  Cancer does change the way you live your life.   It makes it harder but also more grateful for all those little things.    Hot rolls from a neighbor... a card in the mail from your mom... pictures from an aunt and uncle who paint your name on the ice in a hockey game in honor of cancer...  a text from a someone checking in you...an aunt inviting you to do something fun...

     More than 20 years ago after the sudden and unexpected loss of a best friend, I wrote the poem below.   It's words ring true today.    The "little things" aren't always physical items, they are the acts of service, words of kindness and love that we show for one another. 

     Thanks for being the "little things" that support us!

 

Living with Cancer

     Last week was the start of cycle nine of DRd and this week we met with Dr Sborov.   Normally the two go together, but for some reason they didn't this time.   Some of what he said is something that has been on my mind for a while, but especially this month.    At the beginning of the month, a neighbor got up in church and shared about how a friend of his recently passed away after a battle with cancer.   In his last week and moments he had commented that he had "won his battle with cancer".   My first thought was.... but how can that be?   He then shared that he was about to drink the "bitter cup" and taste of death, but was not bitter.   It's gotten me thinking.  Cancer is a battle fought on many fronts, it often feels like a constant assault from all sides.   What are the different ways to "win" or "lose" in the war with cancer?    Here are a few I've come up with.

Physically:
Chris has overcome so much in the past year and a half.   We try to focus as much as we can on the positive and we have some major ones... finishing dialysis, removing his trach.    However there are daily reminders, often in the form of pain, that are a constant reminder.   Constant chemo with only a week break at the end of each cycle is a grind.    If there were an end in sight it would be something to look forward too, but having an incurable cancer easily steals away any hope.   Chris has the heart of a fighter and it's amazing to watch even the little ways that his body continues to fight each day.

Emotionally:
A year ago both of us held things together surprisingly well.    That's not to say we didn't have moments of sadness, fear or anger.   We would take moments to let the tears flow, but then we would pick up the pieces and forge ahead.    Luckily this year we have much fewer appointments to attend and a little bit more free time.    With waning physical energy to do  things, varying emotions all fight for attention.   We try to give Joy priority, but it's easily outnumbered.   Trying to focus on the happy memories and the things that we've overcome is a constant battle. 

Mentally:
There is a lot to juggle and often I feel like my brain is running on overload.    Trying to make sure he has all of his medications and takes each of them correctly is a battle.    I've been able to make some improvements, but it's a lot to manage.   Some medications change in dosages based on a blood tests, some are only taken at the start of the cycle, one he takes depending on his blood pressure, one is a shot.    At a quick count its about 28 pills per day(sometimes more, sometimes less), from about 6 different pharmacies.   I'm sure pharmacists see his list and are anxious, and worried about interactions.    Remembering appointments, continued learning and research to understand the complexities of Multiple Myeloma, planning meals and groceries, remembering to take out the garbage, do laundry, pay bills.   It's a lot to juggle.   We're constantly talking with each other about the appointments and things on the to do list.   Two brains, even a worn out one and a chemo one are better than one!   On top of that working full time, my brain often struggles to keep up with all I ask of it.   Miraculously it's been able to keep up so far, and with the busy Christmas season nearly through I'm looking forward to being able to give it a break. 

Financially:
Without insurance we couldn't be fighting this battle.   This year so far, 1.5 million dollars has been billed to our insurance!   Even with almost two months in ICU and the chemo last year, that's more than double last year.   Our portion has been much less than that, but it's also a constant battle of fighting to have things billed correctly.     With chemo likely a permanent part of our life, each year when insurance resets we'll quickly reach our deductible.   Plus the cost of co-pays and medications for the rest of the year.  We've had help from others along the way which has helped us to stay current and it's alleviated much of the financial stress, but it's hard not to worry about the financial future.  We are so grateful for both of our jobs that are understanding and willing to work with us.   Working for both of us helps life feel a bit like normal,.   Chris being able to work when he can (even at crazy hours of the night) is a huge blessing and distraction. 

Awareness:
One thing many people would remind me of was that I needed to make sure to take care of me.   It's always been difficult to find the time, but I've fought hard to be able to do so.   Last year at the time there was very little time to do that, but slowly.... little bit by little bit.... we both are trying hard to beat out cancer for this one.   One simple thing I've started to do is to take time to do my nails.   It's something simple, but it helps me feel human.    As well Sunday for me has really become a day of rest, where I take a break from as many responsibilities as I can and do what I need to recharge my batteries.    One thing that has been missing from both of our lives the past few years is fun.   There simply hasn't been a lot of time.    One recent "victory" has been the revival of one of my all time favorite video games.   A friend of mine suggested it as a birthday gift for Chris YEARS ago on the original Xbox.    Chris figured out how to play it on our current one and the escape was magical.   I typically hate and suck at racing games, but this one has so many different styles of play that it's loads of fun. 

Socially:
In many of our support groups we hear of people and their struggles to not feel isolated or alone.  A weakened immune system, of varying degrees, makes going out in public a risk.   Unless you have lived the cancer life, many friends aren't willing to accept that you often have to cancel plans and friendships simply fall away.    Having time to do fun things is also a challenge.   We are so grateful for so many different forms of communication that help us feel connected with those even far away.    Chris has some great friends both locally and online that frequently check in on him.   I also am very fortunate to have some co-workers who I see almost daily who remind me constantly that we aren't alone.  We always have enjoyed being at home, so that's a huge blessing. 

Marriage:
Cancer and other difficult medical challenges have been the demise of many marriages.   It's easy to understand why, it makes life hard.    Sometimes impossibly hard.  We've been fortunate that all that we've been through has brought us closer together.    Part of that is because we try really hard to imagine what the other is going through, it's hard for both the patient and the caregiver.   Chris however doesn't let a day go by where he doesn't thank me for all I did for him.   I'm so grateful that this is a battle that we are winning. 

Spiritually:
Facing death brings up a lot of questions about mortality and the belief in higher power.   Our faith has sustained us and given us comfort.    It's hard not to think "Why Us?" or "What lesson are we supposed to be learning?"   Some people when faced with a deadly disease refuse to talk about what to do if the physical battle is lost.   Always with a tinge of sadness we talk about what we can do to make things easier for me and what we can do now to make that difficult time easier.    It's hard for both of us to think about, but it does alleviate some anxiety.    Our belief that we are married not just for time but for eternity is a huge reason why I feel like we can talk about things because we know we will only be separated for a moment in time. 

      During our visit with Dr Sborov he told Chris that he needs to worry less and spend time living.  I don't think he understands how hard of a challenge that is.     Battling cancer is one thing, but living with cancer is another.    With many other cancer's you battle, hopefully you reach a point where you achieve remission and finish treatment and then still worry about if it will come back.   Sometimes reaching a set number of years where with each passing year the likelihood it will return decreases.  .  Sometime in the past few months Chris achieved "Complete Response".  DRd is working and his myeloma numbers are normal.    Some people battle for years to get here, so we know it's a huge milestone.   Strangely it wasn't something even mentioned at a doctors appointment, but something we came across in their notes.    In reality, nothing much has changed.   Myeloma is a strange world.   
       Along with all the ways I listed above, I'm constantly trying to think of ways that we make some happy memories.   Frequently trying to convince Chris to make plans with me to get away and do something fun.    It's hard because almost every time we've tried to make plans we've had to cancel them.   It's hard to look forward to doing something and then having to cancel because somethings happened or come up.    Recently several complications have often led to setbacks and hospital stays with time needed to recover.   But... for the next few weeks our goal is to really focus on the season.    Finding time for fun things, enjoying some special treats and making some memories.   Today after work Chris was feeling good enough that we went out for a date.    Sitting in our car, enjoying our heated seats and some yummy food we talked about the events of our day.   It was a "win" on the living front. 

      Learning to really "live" with cancer is a going to be a challenge.   Focusing on and making time for other things means pushing cancer into a corner and trying to forget about it as much as possible.  I likely won't blog again until next year, so until then have a Merry Christmas and Happy New Year... Wish us luck!

The Iron Lion

Sometimes the stars align and amazing things happen.   A few months ago Chris won a logo design from a guy named Curtis.    He explained to him a little bit of his story and together collaborated in concept.   He was able to create this amazing "Iron Lion".   This complete stranger, now friend, spent countless hours creating this design and both of us were very pleased with how it turned out.    Watching him sketch it live one night got us both super excited to see the final product.    Isn't it awesome?!?!    It's a great representation of Chris's tenacity and courage to fight.   

     Last year about this time while sitting in dialysis one day Chris got a series of texts from his family, all wearing the same shirt.   It brought tears to his eyes, and mine as well, to feel their love and support from afar and has continued to be a source of strength.   We were also able to offer them to additional family and friends.   A good friend even secretly arranged to have Dr Sborov wearing a Team Chris shirt.   We've got pictures of Team Chris shirts from coast to coast.  Throughout the year, and especially during tough times, receiving pictures of them has been a blessing for which we both are very grateful.  With endless appointments and never ending chemo, it can be easy for the cancer battle to be overwhelming but the pictures from friends and family help make the experience a bit more enjoyable and a little less lonely.   Another friend for Christmas got us a digital picture frame which we like to load the pictures in.   A daily reminder that we aren't alone.   

        A good friend of ours owns a company than can create clothing items with and we're excited to be able to combine his willingness to help and the Iron Lion logo into a fundraising effort to help with our continued medical costs. 

     While we are very fortunate to have good insurance, our out of pocket expenses are never ending.  Just staying on top of making sure Chris always has the daily medications is a never ending battle.   Battling with different companies over bills that have been processed incorrectly has been time consuming but easily saved us $1,000's this year.    As well, January brings a new year and a new deductible.    Chris has chemo scheduled for January 2nd so we'll start of the year with large bill.   

       There are plans in the works to offer shirts and hoodies, hopefully sometime early next year.   If there is a specific thing you would love to have let us know.    For now we are excited to start with hats.   They are 39Thirty brand hats, Chris favorite kind.    They come in 3 sizes.  S/M, M/L  and L/XL (See size chart below).   These hats are typically sell for about $25-60.   If you would be interested in helping us out and sporting one of these amazing hats please reach out to us and let us know.    They are embroidered and look amazing in person.   To cover the cost of the hats as well as some to put towards medical expenses, we are offering them for a minimum suggested donation of $25.  The amount you choose to donate for each hat is up to you, so make sure when you message us your order that you indicate the qty and sizes.   For example if you want to donate $100 and just want one hat, that would be great.   If you want a hat but can only afford $25, that's great.   We're happy and appreciative of any help to lessen the financial burden.     

      Comment on the Facebook post or e-mail us at Carlsson.Home@gmail.com with any questions or to place an order.  We can then work out the logistics such as payment,  pick up or shipping (for an additional amount) and sizes and qty's. 

Thank-you so much for your continued support!
      

In Every Drop

       The past two weeks have been a bit of a blur.   Part of my mind is still back in October while the reality is that it's the middle of November.  Coming home from the hospital, visiting several times to check kidney function and also starting cycle 8 of DRd have kept us pretty busy this month.  If there's one thing that will keep me grounded it's working in retail at Christmas.    We're right in the midst of preparing for the Christmas season (with 9 pallets in the past 4 days).  There's much more coming next week, in addition to Black Friday.   

      Good news is that his kidney's are doing better.    One of their main functions is to regulate fluid in the body.   When they were failing last year they limited any liquid intake to 1.5 liters per day to allow them to have a lighter load and hopefully recover.   This time they were encouraging him to drink as much water as possible and also had him on a continuous IV drip to help re-hydrate them. It was quite the switch.     Because his kidney's were on strike they weren't processing the fluid and from when he entered the hospital to a few days after he was released he gained about 25 lbs (about 11) liters of fluid.  Having water tucked in every nook and cranny was a painful experience.   At one point, and for almost a week, his feet were swollen to almost round in shape, red and very painful to even the slightest touch.    Having to walk on them was torture.   The fluid pooled mostly in his legs which made walking difficult and put stress on his hips and knee's.   His kidney's were also very painful and leaning back at all was excruciating.   So, he spent most of his time in the hospital trying to get comfortable in a chair.    The pain meds would make him loopy, and it was a struggle to find a balance.   We both were a bit surprised when they came around for rounds one day and said they thought he could go home.   His creatinine and potassium were trending in the right direction and they felt he was out of the woods.     Knowing he would get better rest and be more comfortable at home we didn't fight to stay longer.   

      Meeting with his myeloma team at the start of his cycle on Wednesday they wanted to start to try and get the fluid off and put him on a diuretic.   His hemoglobin was also very low so they  scheduled a blood transfusion for the next day.   He started the diuretic on Friday and Monday when we went for labs he was down 30+ lbs, about the equivalent of 14 liters (or 7 large bottles of soda).   They were stunned and a bit concerned at such a drastic change and told him to cut back on the dose and scheduled more labs to follow up.   His kidney #'s at that lab were doing well, so hopefully taking it easier this week and continuing to drink lots of water this week will help his kidney's continue to be happy. 

        This week while the barrage of boxes was descending upon our store, one of my bosses, came by to help us.   He asked how Chris was doing and then shared with me a story and a quote that reminded him of Chris.    I was touched that he could recognize in Chris a trait that I also see.   There were a few variations of the quote, but this one I felt was the best in our situation.    This recent hospital stay was very physically challenging, but also for some reason very difficult emotionally as well.   Dr Sborov even picked up on it when we visited with him, but didn't really offer any encouraging words which left us both a bit down.   Now as he's feeling better, little bit by little bit, he's also recovering back to his cheerful self.   The smile on his face when I get home from work and the offer to do anything he can to help ease my aches and pains is the Chris that I  know and love.   I'm so grateful to have that back. 

     
       

Tomorrow

     Continuous fluids and several medications and the numbers show that Chris's kidney's are doing better.   His creatinine is still elevated, but coming down.  It was 4.5 on Halloween, down to 2.9 now and 1.25 is normal, however since last year Chris is usually around 1.4.  His potassium is on the high end of normal.   The doctor's feel like it was safe for him to return home.  He's still overloaded with fluids and his legs and feet are red and painful to the touch from stretching to accommodate the fluid.  Added to the neuropathy from chemo that he already had, it's very difficult and painful to walk.   We haven't seen Dr Sborov since Halloween, and he checked in on us today.   He recognizes this has been a huge setback, one that's going to take quite some time to recover from.   The doctors in charge of his care while in the hospital think this was likely just a complication from the meds his kidney doctor put him on.   In some ways it's comforting that it doesn't appear to be a sign that the myeloma is outsmarting the chemo, but it's also heart breaking to know that the specialist who was supposed to help us safely reduce the swelling did exactly the opposite.   This very likely could have been avoided.  
  
      We were blessed this trip with some amazing nurses and aides.    A few we even had for a couple days in a row.   I can only imagine how difficult a nurses job is and am so grateful for all that they do to keep Chris safe, comfortable and cared for when he has to be in the hospital.   One moment when out walking the halls an alarm sounded in a room and I watched a half a dozen nurses and aides run into a room to help.   At one point, Chris picked up on the fact that one of his nurses seemed a bit overwhelmed and spent the rest of the day trying to cheer her up.   She had casually mentioned that she never heard her name, and so we both made an effort to sincerely thank her, including her name (Aimee) when we had a chance.   Working with Aimee was an aide named Luke.   Male nurses and aides aren't very common but are always a nice addition to the care team.   Luke was very knowledgeable and helpful and always put Chris at ease.   Another great nurse was named Maureen.   When we noticed that Chris's feet were red, hot, sensitive and very swollen and asked her to check on them you could immediately tell how concerned she was.   When she later accidentally stepped on his foot while trying to get IV pole she was so remorseful.   When the pain subsided Chris did his best to make her laugh.   I love this quote because I feel it goes both ways.   Both from nurse to patient and patient to nurse.   Chris is always so appreciative of those who care for him.  

      This time we had mixed feelings about coming home.   Walking is so difficult and painful that being home means it would just be the two of us ensuring his safety.   However, it comes with the added benefit of his recliner.   He struggled the entire time to be comfortable and spent most of his time in a chair.   He tried the bed on a few occasions but the pain when leaned back from his kidney's made it intolerable.  Coming back to his recliner where we know he's going to be able to rest comfortably is a huge blessing.   (Thank-you again Grandpa).   As well, being able to return to a shower where he not only feels safe but comfortable and a bit pampered as well is another huge plus.   (Thank-you Fred).  

       While returning to the comforts of home is a treat, tonight we also had another treat.   A sweet friend and employee from my time in St George had hot chocolate chip cookies delivered.   They were amazing!  Baking is a hobby I haven't had much time for lately, and we've both missed cookies fresh out of the oven.   These one were delicious!    Thank-you so much Jamie!  

      In our a support group I remember reading another myeloma caregiver saying that they don't like cancer being compared to a battle and that when a person dies from cancer they have lost the battle.   While I can see why they think this way, I think the analogy does fit very well.   I however don't see cancer as a battle, I see it as a war, one with many, many battles.   Sometimes the battle involves conquering the effects of chemo, sometimes it's choosing to get up and face another day despite the pain.   Sometimes it's a battle to stay positive and other days its a allowing feelings of sadness, fear and despair to escape as tears.   With all of his challenges, Chris is fighting a battle with multiple fronts.   It takes a lot of energy and planning to stay ahead of the enemy.   For tonight we wish to call a truce and hopefully have a small moment to recover.   Wednesday begins the start of cycle #8 of DRd.   With DRd and Dr Sborov as allies we are still winning and hope to keep it that way for quite some time to come.  

Re-Balancing

    When we look back on our different hospital stays we usually refer to them by the condition that landed us there.   Since we already have a "kidney failure" stay this one is likely to be remembered by our visitors.   Nope not people but box elder bugs.   Not the occasionally one or two, but countless ones hanging out in the bathroom and squished on the floor.   Trying to sleep in a hospital with all the beeping and interruptions is always a challenge, but having the heebie-jeebies of bugs climbing all over you is one we hope not to repeat again.     

     Anyways, yesterday he started the day with an ultrasound of his kidney's and a visit from the BMT (Blood and Marrow Transplant) team who is in charge while he is here.  Since he is here for kidney failure we knew we would also be seeing the kidney team and were surprised that they didn't show up until late in the afternoon. 

      Because his kidneys are struggling his electrolyte levels are out of balance (potassium, calcium, sodium, etc.).    On the basic blood test pretty much everything is flagged.   The main one they are concerned about is his potassium.   The high levels can cause problems with his heart so before we even got to our room they did an EKG.   There was a "small" afib so they have him on a heart monitor (they call it telemetry).  He's also on a continuous pulse and oxygen monitor.   It went off constantly all night and day yesterday making it a pretty sleepless night.    After swapping out monitors and sensors multiple times they finally figured out that a forehead monitor would give better results so he's rocking a nice headband to keep it in place. 

       They have done a lot of different things to try and bring his potassium levels back into balance including, strangely, a high dose breathing treatment of albuterol.   His levels yesterday were up and down, but today as far as we heard, they are trending down. 

      One strange thing compared to last October is that instead of crazy high blood pressure, his blood pressure is really low.   The BP monitors have a hard time recognizing it, so they are checking it manually.   The systolic number has been in the 80's or 90's, but today it was in the low 100's.  A sign that things are headed in the right direction.   Kidneys are very particular and don't like either high or low blood pressure.  Having normal makes them happier, and we much prefer happy kidney's. 

      The updates from the two different teams today is that they are about 90% certain that his kidney's are struggling because they are dried out (I think from the medications to try and pull off extra fluid).   They are giving his kidney's some TLC and have him on continuous fluids to re-hydrate while also trying to not make the fluid issues worse.   His legs and feet are very swollen and painful so it's a tough balance which is going to keep us here for at least several more days.   Healing is just going to take time and we just have to be patient.   There probably won't be much to update, so in this case no news is good news. 

       Today for the first time in any of our stays we had a visit from a chaplain.   It felt a bit like being on a show called "The Story Trek" as we shared with him some of our story.   What a crazy story it has been!   Being able to share with him some of the miracles we've experienced, and the love that's been shared was a great way to pass the morning.   Joy and peace are there if you make sure to look for them.   Perhaps instead of remembering this visit at the box elder bug stay, we can try and remember our visit with a chaplain. 
   

Halloween Fright!

      As you can imagine, the events of last year have been fore front in our mind this month.  We each have re-read the blogs entries, often with tears streaming down our face, trying to figure out just how we survived.    Earlier this week were talking about the tragic events that led to us being locked down at Huntsman the night before Halloween.   When a similar event led to things being locked down again, we were so grateful to be safe at home.   What a crazy world we live in!   However, much to our surprise, here we are again almost exactly one year later in a room facing the courtyard that held so much fear.   Luckily the darkness outside isn't terrifying and there are no helicopters searching.   Instead however we are again facing a familiar demon. 

      Chris hasn't been feeling well for the past week which is sadly pretty typical.   Today is the start of his week free of chemo and during the last week he always feels pretty crummy.   We are trying to learn to recognize and be sensitive to different symptoms and this felt different.  He's been very weak and had no energy.   We thought perhaps he was low on hemoglobin again and likely would need another transfusion.   However, when you feel like crap, it's hard to sometime pinpoint what's wrong and how it's different.    When he started to have lower back pain over the weekend we knew something was off and reached out to his team on Monday.   They were able to schedule labs and today we went to Huntsman in Daybreak to have them drawn. 

       They came back pretty quickly and among other things his creatinine is 4.5.   He's in kidney failure.   :(    Instead of being transferred across the hall to the ER we convinced them to just arrange for us to go to the ACC (ER like department) at Huntsman.   We figured the next step would be being admitted and riding up in our car was much preferred to an ambulance.   Once situated in the ACC, Dr Sborov stopped in to see us.   They are running lots of tests and we'll hope to know more in the morning.   However we think that the changes the kidney doctor made to his meds last month have caught up with him and have stressed his kidneys.    Less than a month ago they ran his myeloma labs and they were good, so Dr Sborov doesn't think it's that the chemo has quit working, more labs tonight will hopefully confirm that. 

     We didn't even actually see a Dr in the ACC and were moved to his room about shift change time.    When the new aide came in, he not only recognized us from our visits to Huntsman this summer, he came right over and gave me a hug.  While I'd much prefer that Huntsman wasn't the place "where everyone knows your name", it does provide a bit of comfort to have a familiar face providing care and helping Chris. 

     So while we hoped to be at home tonight celebrating Halloween and greeting the ghouls and goblins on our doorstep we're hopeful that they will be able to figure out and resolve the issues that brought us here.   It will likely be a long night. 
     

20% or 25% or 33%

One year ago today, I was told that I had cancer. In true Chris Carlsson fashion, I had to get an incurable, rare blood cancer, that you can't surgically remove. At the time, I was told I had 3 to 5 years left, as per average. This number still haunts me.

20% or 25% or 33%

That is how much of my life was used up in this cancer-versary. I look back and all I see is a year of pain and doctor visits. That is, until I look deeper. I was able to spend a lot of time with my sweetheart, my bride. Thanks to a few miracles and miracle workers, she was able to be there with me, for every poke, stab, draw, cut and drill.

20% or 25% or 33%

One great part is being able to still work. My work has been very understanding and very cool. I have also made a few great friends and have learned to let people in. I am a pretty private person, but I feel it is good all around to open up, let people in a bit. If people ask, answer them and be honest. It is not easy being in this predicament, but if you let people who are will to help shoulder the load, it actually can become a little manageable!

20% or 25% or 33%

The hardest part, in reality, is the pain. I cannot take ibuprofen, and that is my go to. I am sure if I pushed, I could get a stronger med, but with the recent "crisis" in the news, doctors are VERY hesitant to grant the wishes of a pain medicine, so I pass on it just so that it doesn't cause problems. My theory is, if the pain is there, there is a problem and it needs to be fixed, not covered up.  So I deal with it. Every single day. And it is always moving. See the picture, I love this.

20% or 25% or 33%

The victories! Oh man, the victories. So if you follow me at all, you would know the best current victory was getting the artificial trachea out. It was a surprise move and came out of no where. We went in looking at surgeries, and left with how to deal with a hole in my throat. It healed quickly and I just went in to a follow up appointment, and this is his words. "Well, everything looks great. Maybe I will see you around the halls sometime?" and with that, I learned I do not have to see him for my throat again. Obviously, if something goes horribly wrong, but, I am all about graduating away from doctors. This week at another appointment,which was an iron infusion. Because my port had to be accessed, they drew labs for my calcium infusion. While waiting, my doctor's nurse came running in and was all, "Did you see the numbers?" and out of breath. I said no, but I am hoping they were good. My calcium was actually normal. His words, not mine. If you have been following, you would know my calcium has been bad since they gave me a nasty infusion in July. I finally recovered. Sweet victory!

20% or 25% or 33%

Having realized I may have spent a third of my remaining life fighting this, and running from appointment to appointment, and shot to shot, and infusion to infusion, and.... well, you get the idea, I have decided I need a bit more balance in my life. Getting my trachea out has been huge. Having energy again because my calcium is normal has been very good.  Now, I think I want to have a little fun. Some shenanigans. Some adventures.

20% or 25% or 33%

So, if you realized you had 80%, or 75% or 66% of your life left, what would you do different? Travel? Have fun? Experience new things? Well, there is the challenge. Before 2020, how many new experiences can you get done? As hard as it is to travel and get around, I really want to have a bit of fun before I move on. Who's with me?

A Lot Can Happen

     While almost three weeks ago we celebrated our 18th anniversary, we are now approaching a different anniversary of sorts.   Thinking back most people have a date when they sat down with a doctor and were told the words defining words, "You have Cancer".   We never really heard those words.     
     We were told instead,  "We don't have enough information to make a diagnosis, but we suspect you have multiple myeloma"  and  "We need to figure this out."   We are "Fairly Sure" or "Fairly Convinced".  Because of an ill timed weekend waiting for test results, our chances of getting a 100% diagnosis never happened.   Just like when choosing your spouse, sometimes the difference between being "fairly sure" and 100% certain is a monumental difference.

     We did have a bit of warning that something bigger might be coming.   Having started dialysis just a few days prior, Dr Cho sat down with us and tried to petition with us to allow Chris to get a biopsy of his kidney's.   After all that he had been through he was frustrated that no one could explain to him how was in kidney failure but not experiencing the symptoms of kidney failure.   He was insistent that they work on getting him released.  After that another doctor had slipped up and said something about his diagnosis but I didn't catch it. 
       On the 19th, two weeks after being admitted to the hospital a Doctor with Huntsman embroidered on his white coat showed up to to talk to us.   For me it was then when I realized what the next step was. 
      He talked with us for a bit then returned later with his boss.   That's when we met Dr Sborov for the first time.   They must have known they needed to bring in the big guns to convince Chris to stay in the hospital and allow them to do more tests.   Looking back I'm very grateful that at that moment Dr Sborov was the one who came, because had it been the other myeloma doctor (whom we met later) I'm not sure that Chris would have been convinced.   He helped explain that if it was what they suspected every day that past where we didn't start treatment was injuring his kidney's and increasing the chance of being on dialysis permanently.    He needed to run more tests to be certain and to start treatment.    Dr Sborov wanted him to be safe, and that couldn't happen at home.   Being inpatient also meant they could get the needed tests done more quickly.   It was a lot to take in.   And if that was not hard enough to swallow, one of the last things he told us was was even harder to hear... "it's incurable". 

      Because of an ill timed weekend and the difficulty of coordinating dialysis with biopsies, we never really got that 100% diagnosis.   It wasn't too hard of a decision to accept that they wanted to start him on high dose steroids.   The next one however carried more risks and potential problems if they were wrong, but he consented to start another drug (Bortzemib).   When a new week brought a new doctor in charge of his care things changed faster than we were ready.   Without any warning or prep, the full on chemo (Cyclophosphemide) was administered.  I had gone to work and returned just in time.   His nurses were all gowned up in special gowns, gloves and face masks and a hazmat container was stationed in our room.   It was frightening. 

       Now here we are a year later.   Facebook reminds us regularly of memories from last year and we've both been re-reading entries from the blog.  They are so many feelings.... terrifying, encouraging, uplifting, and humbling.  He had been admitted to the hospital on the 5th, and on the 19th is when we met Dr Sborov for the first time.   So much was crammed into that month that it feels like a lifetime.   The risk of starting chemo was worth it and it paid off.   Being able to finish dialysis was and is a huge victory. 
   

      Compared to last year at the time, life is better, but it's come at a price.   Chris has endured so much and yet very rarely complains.   He strives so hard to be cheerful, but often I can see the pain hiding below the surface.   One day when I asked him how I could help he let it slip how hard it was to be in pain constantly.    Because of his kidney's he is discouraged from taking most pain meds, even ibuprofen.   Tylenol is the only thing he's can take, and most times he skips it because it really doesn't help.   From neuropathy and painful swelling in his feet and legs to persistent headaches, there is usually never a moment when he's not in pain of some kind.     I'm amazed at how hard he works to still be cheerful despite so many reasons he has not to.

        The most recent pain has been from a rare side effect from Zometa; the drug that has caused so many issues with his calcium.   A boney growth has formed inside his mouth.   It's big enough that it's broken through the gums and has been rubbing his tongue raw.  It's almost like a spare tooth growing in. 
      We joked yesterday at chemo that someone mixed the orders up and it's a tooth growing the wrong direction on the wrong side of the mouth.    Even though we had taken care of all of his dental issues earlier this year, as preparation for transplant, his teeth have decayed from all of the different medications.   It has caused a bridge to fail.  In order to fix it, he needs an implant.  Even though he only had one dose, Zometa can make doing dental work very challenging.   However it's also likely that an implant would fail.   Thinking we wouldn't have time to go to the dentist much this year, I made the mistake of picking a lower dental plan.  Whoops!  At the time I had no idea that myeloma can also wreck your teeth.   There's no doubt about it, myeloma sucks!


     The good news is that yesterday was the start of cycle #7 of Daratumamab.   His myeloma labs still look good and what we are doing is working.   Today we are at both the UofU and Huntsman.  At the U we met with a kidney doctor, his kidney's are doing good.   He suggested a change to a few of his medications.    After that we came back to the infusion room at Huntsman for his first ever blood  transfusion.    He's been right on the verge of needing one because of low hemoglobin levels (anemia) for many months.   A "normal" person is considered anemic when their hemoglobin is below 13.5.  Chris is below the treatment parameters of 8.0. They also did an iron study and his iron is very low.  From what I understand, hemoglobin are the red blood cells that help transport oxygen in the body.  Iron is an essential ingredient in producing them.    It's something new for us to learn about and understand.    The good news is that his calcium has been doing better and he hasn't needed infusions the past few times.   I guess we'll be trading calcium for iron infusions for the next few months. 

     Looking back it would be easy to just see only the difficulties, trials and sorrow.   However, along the way there has been so much more.   Much love, much compassion, much growth, and also multiple miracles.    It is these things that carry us forward.  We are grateful that we took that leap of faith and started treatment, and even more grateful that it's working.    We hope and pray that it will continue to work for a long time.   But for now, we celebrate that tomorrow is another day.  (One without a Dr's appointment, hooray).