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.