The Playlist

     Last week on Monday, as Chris was emerging from the darkness of the horrible week before we had te opportunity the have music therapy come.   A sweet young woman came with her guitar and offered to play songs for us.    The therapy was good for both of us, and tears streamed down my cheeks the entire time.   

    The three songs Chris picked were:

Over the Rainbow-Israel Kamakawiwoʻole

Amazed -Lonestar 

Livin’ on a Prayer-Bon Jovi

    His song selections were thoughtful.   The first had me grieving for the simpler times of the past, and longing to "Wake up where the clouds are far behind me" and have "trouble melts like lemon drops".   

    The second song was a special request to celebrate a belated anniversary.    It's been one of our songs since before we were married.   How so very much "I wanna spend the rest of my life, with you by my side".   

      The final song could have been our theme song for the past month.   Livin on a Prayer.   We couldn't have made it this far without countless prayers being said by us and on our behalf.  

    After two long weeks, he was moved back to a regular room on Sunday.    This week he's making progress.   Healing takes time and he's got a lot to recover from. Medically he is stable, but he needs more therapy to recover his strength.    In the next few days he will likely be moving to an inpatient rehab hospital where he can receive more therapy.  

      Today music therapy came again.   I teared up a little, but didn't cry as much this time.   The past week seeing Chris improve has been good for my heart.  The three songs he chose were:

Roar - Katy Perry

Take Me Home - John Demver

Amazing Grace

     She slightly tweaked the words of the first song to fit perfectly his fight against cancer as the Iron Lion.  The second song, very fitting of course.   We both can't wait to get home, to the place where we belong.  

    These lyrics from Amazing Grace were perfectly fitting of the past 5 weeks.   

"Through many dangers, toils, and snares
I have already come
This grace that brought me safe thus far

And grace will lead me home"

    Hopefully one day soon, we will be back home...

      

The Impatient Patient

      As we finish an entire month inpatient here at Huntsman, its been another long week and we are still in the ICU.  Chris is growing increasingly impatient and super eager to get home.    A sign to me that he is feeling more himself.   I hope that getting home will be possible soon, but unfortunately I think we still have a ways to go.   His body has so much to recover from and healing takes time.   

      We thought we would move from the ICU on Monday but his kidney's still needed more TLC.   He was on the continuous (CRRT) dialysis for most of the week.   On Thursday they took him down to IR and replaced the line in his neck for a tunneled line.   Something that is more comfortable and poses less infection risk.   With the new line this afternoon they have been doing traditional dialysis and mentioned likely will return tomorrow.   His blood pressure is still on the low side so they haven't been able to remove as much fluid as they would like, but he was able sleep peacefully through it.  

     He has slowly been working his way down on number of tubes and IV's.   On Wednesday night they removed his feeding tube.   He doesn't have much of an appetite so I keep trying to encourage him to eat.   He will spend forever looking over the menu, but nothing sounds good and he only eats a bite or two.   At one point he was disconnected from all IV's.   It didn't last long, but it was a milestone.  

     As an expected side affect of the chemo,  he has needed three units of blood this week and likely will need more.   This is such an important part of his treatment and we are grateful for the amazing people who donated so he could have this precious infusion.   I know there are so many people who want to help.   It would be AMAZING if there were people reading this who could donate blood.   It doesn't go matter that it can't go to Chris specifically,  just having people donate so that that this life saving treatment is available for others who also need it would be a blessing.   

       They ran his myeloma markers earlier this week, but they take several days to come back.    They run a TON of labs while in the ICU (no wonder he needs blood).  Because of the blessing of technology we have access them quite quickly in an app.   I've been anxious each time a notification pops up that a test result is available.    This afternoon they popped in.   His light chains were at just over 1000 on 9/9, climbed to 1600 on the 9/15 and then 3100 on 9/22.   On 9/28 they are down to 815.   Whew!    Still high, but a huge improvement in just a week.  

     As well, today for the first time in almost two weeks.   Chris was able to put his feet on the ground and stand.    This months challenge knocked us both off our feet, but little by little he is overcoming some immense challenges.    Hopefully the coming days will allow rest and healing,  so that he can gain the strength needed to return home.   

Calm Heart, Calm Mind

      Over the past two days, Chris has made so much progress.   Friday afternoon he emerged from the darkness that engulfed his mind.  The light came a little at a time, and brought with it portions of peace and joy.  He has progressed from saying just a few words, to being able to answer the simple questions that somehow became so difficult.    How hard and frusterating it must have been for him to not be able to respond to the question "What is your name?"   

     Yesterday he was pretty tired and slept most of the day.   I was grateful for the opportunity for him to do so.   I myself took time to go for a walk and enjoy the sunshine and cool breeze.   As well as the flowers along my path.   The day was quiet, but a welcome change to the anguish of the previous days.    

      Last night he had a visit from Carmen and Isaac.   It was music to my soul to hear him laugh.   He even played a mean trick on Carmen, causing her to nearly jump out or her skin.  

     Today he has been so grateful to do such simple tasks that we all take for granted.    He petitioned his nurse constantly to allow him to have an ice cube.    Then another, and another.  He complains to his nurse about the great ice cube shortage of 2022.    I can't even fathom how dry his mouth must feel after almost a week without a drink.  

    When he worked with Jane from OT, he was so excited to brush his teeth.    The simple movement of untwisting the cap took such effort, but he was determined. Brushing his teeth "felt like heaven."   Profound sadness also crossed his face when she showed him his reflection in the mirror.    Dialysis lines protruding from his neck, a feeding tube in his nose and an oxygen cannula dangling awkwardly trying to fight for a place to be.    

     As I've lain my head on my pillow each night, it is so easy for the horrors of the past few weeks to come flooding back.   But repeating the words of Dr Sborov have helped push them "Calm Heart, Calm Mind".    Today they will also be filled with the tender moments spent side by side with my sweetheart.   Sometimes words aren't necessary to communicate the profound gratitude for being able to survive this trial together and the promise of eternity together.   

Purgatory

     Today while talking with the social worker, she very accurately described the past two days.   Purgatory.  

      Yesterday they did another CT to check his abdomen.   After that the removed and replaced his dialysis line.   The new line is still a bit positional and finicky but we've been much more successful with being able to run it.   His kidney numbers are finally trending in the right direction.  

     It appears however that at some point, the difficult mental state he is in may not be from his kidney's but from the high ammonia levels caused by aggressive myeloma.    Which unfortunately are higher today, even with a good night of dialysis.    

     I talked with Dr Sborov at length and he has researched and discussed with colleagues here and across the world.    I gave consent for to start chemo last night.   It comes with risks for bleeding and infection.   

      His brain is still struggling,  but trying so hard to function.   Yesterday he said mainly just one word, today he has added more.   When one of the providers checked on him, he did squeeze her hand and very slightly wiggle his fingers.  

       Hopefully this weekend he will improve as the chemo fights the myeloma.   There is a nearly impossible battle waging.    Now is a time for patience and prayers.   

    Purgatory can be defined as a "having the quality of cleansing or purifying".   Please let it be cleansing his body of toxins and myeloma.   

Smiling Into Your Eyes

      This morning the dialysis tech came in the early hours of the morning and did a session of dialysis.    I was a bit surprised to wake up and see the machine gone because I thought they were doing a different type of dialysis called CRRT (continuous renal replacement therapy) and not hemodialysis like we did five years ago.   CRRT is a slower dialysis that is run 24 hours instead at a slower pace.   It's great that he was able to tolerate the other kind and I was hopeful that he would start to "wake up".   But it was not so.   I spent part of the morning trying to clean the glue and medical tape out his hair.   Last night when they removed the leads they used acetone, but I just used patience, some washcloths and a napkin.    There is still quite a bit to be cleaned, but we at least made progress.  While he struggled to open his eyes, it was surprising to me how helpful he was in trying to brush his teeth.   It was clear that he was participating and it probably felt so good.   Since he has a feeding tube for all of his food and meds, his mouth looks so uncomfortable.   

      We also had a visit from a new set of doctors, liver doctors (hepatologist).    They had been asked to consult because Chris has high levels of ammonia (hyperammonemia) in his system, which is yet another thing that can cause confusion.   They talked a lot, but didn't say much.   Essentially the ammonia is concerning and a sign that there could be issues with his liver (like cirrhosis or fatty liver disease) but it could also be attributed to his failing kidneys or myeloma.   When his nurse was doing shift change she summed it up as "his levels are concerning but could be attributed to other things, but they were brought in to see if would be safe to do chemo".   No word from Dr Sborov today, so I'm think they are working hard to make sure they can do so safely. 

      They decided to start CRRT dialysis this afternoon which didn't go all that well.   They hooked everything up and tried to get started, but there were issue with his central line which caused the machine as a safety to stop.  They did a large IV of heparin to thin his blood, and albumin to plump up his veins and arteries.   The line which they placed yesterday wasn't quite long enough (sound familiar) and didn't quite go deep enough.   The vein or artery (I can't remember which) is also a bit "floppy" and whenever he coughs or rolls his head it suctions to the side wall and stops the machine.   They have to pull or push the line to get it to unstick and then restart the machine.   It has to happen quickly or the blood that is in the various parts of being filtered will clot and the entire filtering system and his blood in it has to be discarded.   

      His poor nurse, Amber,  became the third wheel to our anniversary party.   When he started the CRRT he became her only patient.   But anytime she tried to get anything done, he would move or cough and she would have to fix the line.   At one point I stood and held his head and kept him from moving.    I'm pretty sure she was so relieved to be done for the day.  

      However, I think we may have finally found the magic combination.   Along with a couple other things, I suggested that we let gravity do some of the work and put pillows under one side to encourage his head to stay put.   To try and avoid bed sores they have been trying to move him every few hours, but the importance of cleaning his blood trumps bed sores so hopefully tonight the machine can do it's thing and help clear up the gunk in his system.

     Today was one heck of a way to spend an anniversary.   Definitely one to forget instead of remember.   Hopefully tomorrow the deep fog that he has been in this week will lift and we'll be able to look into each other's eye's.    No words will be needed, but they will be welcome if they come.   We've been through so much, and there is much still to overcome.   But we've still got a lot of love to share with each other.   

The Little Details

     Today was a quiet day in the ICU.   His kidney's aren't doing any better and while I know he preferred to not do dialysis we've reached the point where it is the next step.   He wasn't coherent or awake much today, but there was a brief moment when we were alone and he was able to tell me he loved me.   The doctors needed my permission to install the central line which they placed around eleven.   It was placed in his right neck and looks so uncomfortable.   The timing ended up working out great as I was out in the waiting room waiting for them to complete the procedure in his room when I had a visit from my mom and two of my aunts.   The dialysis tech brought the machine up, but had to leave do to an emergency dialysis needed in the NICU.   (How sad!)   Earlier in the day his nurse who was training another was talking about them sending him down for an MRI of his spine to check for infection there was explaining to her that patients in the ICU typically take priority over most others in the hospital.   They are also apparently difficult calls to be made when it comes to ICU patients.   They hopefully will be back soon to start tonight as I worry about waiting too much longer.  

    I also had a visit from Dr Sborov.   It appears that he is going to be tapping in as part of the team.   His myeloma numbers came back and the are climbing.   His m-spike is holding steady, but his lambda light chains are higher than when we checked them after he was admitted.   There are likely different versions of myeloma cells in his body and the ones that cause his m-spike are steady, but the other is raging.   His light chains are about half as high as they were when he was diagnosed.   With the extremely delicate state of his kidney's the decision to start chemo is not one he takes lightly, but he thinks its time to start chemo.   He would like to do CyBorD, which is the original chemo he did when he was diagnosed almost 5 years ago.   He also wants to also add Darzalex (which was part of his second chemo that worked for several years).   They are going to work on insurance approval and could start as early as tomorrow.   

      I wish we could wait for the dialysis to clear the toxins out of his system and return his mental status, but I completely trust Dr Sborov's judgement as he walks the fine balance to keep Chris alive.  It may seem insignificant, but while talking today he asked if we were in the same room as when he was brought here earlier this month.   I noticed it when they brought us back up.  However for him who is in and out of patient rooms all day to notice that it is an example of his attention to detail.   

     As he left the room, he paused at Chris's bed and gave him a pep talk.    He talked to him as if he was awake and told him that his brain will get better and the he needs to fight.    

     The next few days are going to be critical and Chris's desire to live is going to be more important now than ever before.   He's got a lot still to fight through and we'll take wins where we can.   Tonight while I was visiting with Reed the EEG tech arrived to remove all the wires from his head.   They didn't find anything conclusive in their study.   They had hoped to catch him going into one of his "episodes" but since he's been pretty out of it most of the past few days they were unable to.  

       Who knows what tomorrow will bring, but for me, I'm hoping it brings Chris back to me.   To talk with me and fight to be together.   It is after all our wedding anniversary, and that would be the greatest gift.   I supposed if necessary it may be a day or so late.   I know he's there struggling through the fog.   

Back Again

      What a weekend.   After the craziness of Wednesday and the steadily improving on Thursday and Friday, I was hoping for a bit more of a relaxing weekend.   After a visit from his sister Tammy and brother in law Mark on Friday, he was surprised with a visit from Fred on Saturday.   Fred was a super volunteer and jumped right in to help with physical therapy.   Chris was determined to stand up.   He didn't quite make it on Saturday, but I'm sure it felt good to stretch.   We however wore him out and most of the rest of the day he was super sleepy.   

      It was super hard to leave on Saturday night, but the idea of sleeping in my own bed was so tempting.   So when things had quieted down for the night, I quietly slipped out.   I wasn't home very long when I got a text from Fred that he wouldn't wake up to take his medications.   Fred thought that we were pulling a trick on him, not quite the simple night I had hoped for.   They took him down for another CT which was unchanged.   Things calmed down and they put his CPAP on and he slept.   Sleeping in my bed was wonderful, even if I now have a habit of waking up every couple of hours thanks to the way things are at the hospital.  

     It made my heart so happy when in the morning Fred told me that he was very talkative and alert.  Chris had been singing to Chris in his sleep, so I don't think Fred got much sleep.    I headed back up to the hospital and he was having a much better day.   He was still tired and would nap, but was fairly conversive.   He was determined to stand up during PT.  Fred returned home and Tammy and Mark stopped by for another visit.   They had planned to place a dialysis line today and he wasn't supposed to have anything to eat or drink after midnight.   He hasn't wanted to each much (a protein shake and a banana now and then) and they have limited his fluids to 2 liters.   

      This morning was a simple morning.   OT came to work with him so I worked for a little bit waiting for him to wake up.   However at about 10:00 he wouldn't wake up for his nurse to take his meds.   She gave him a bit more time, but then things progress quickly.   Before I knew it, the rapid response team was here from the ICU and they were moving him back up to the ICU.   He wouldn't respond to sternal rubs, pain or yelling.  They ran more labs and decided to try Narcan again.   He didn't respond to the first dose, but then about 5 minutes later he opened his eyes and started talking to his nurse.   But then was back asleep.   They tried a second dose with no change and decided to also try a slow drip of Narcan.  They stopped most of his medications earlier this week and the doctor said he thinks it was just a coincidence.  About 1:30 he woke up.   

     He's been mostly awake for most of the afternoon, sometimes able to answer questions, sometimes not.   They wired him up again for a STAT EEG, this time one that will monitor the electrical activity in his brain for the next 24-72 hours to watch for seizures.   We have noticed him twitching more the past few days.   Sometimes his right leg, sometimes his left hand like it's asleep and he's trying to wake it up.   

     While one of the providers was here, he was talking and said he had a strange request.   He wanted a soda.    They did a couple test swallows with some water and he did OK, so they said his nurse could give him a few sips.   He told her she was his best friend and then told me after that he hoped she didn't get in trouble.  I assured him the doctor had said it was OK.   

     He had the unpleasant experience of having a feeding tube placed while he was awake.   He told the techs that he wasn't a fan and didn't want to do that again.   He hasn't been eating much for the past while, especially the past week so even though it sucked I think it will be an important part of healing.

     Among all of visits from the ICU team and his amazing nurse today, I had a visit from Dr Sborov.   He's still sitting on the sidelines because as far as we can tell the kidney failure issues are related to the infection.   He's waiting on myeloma numbers to come back to see how much of a part it is playing.   Aside from steroids he had last week, Chemo is on hold to avoid making things even more confusing adding more symptoms or complications.   I also had a visit from my parents.   

       Last I heard, dialysis might be happening tomorrow.   There were signs today that he might be turning a corner but labs still show danger.   I feel like we are close and they are just waiting for him to turn the corner.  

       It's been a busy and long day.   Hopefully tonight is a simple night with good rest and healing.   

      

      

Hello There

     Another day has come and gone, and today I am happy to say it looks brighter.  Yesterday he had a busy morning.   He was still quite confused and sometimes would answer,  sometimes would just look at you trying to get words out, sometimes answering the same thing over and over.   He wasn't able to say who or where he was and couldn't say my name.    While speaking was tough, I knew he was still there.   If you would say "Hello" he would say "Hello There" in just the right way that he sounded like Obi Wan.     A friend described it well...."If Chris is quoting Obi Wan, Chris is Chris"    The morning wore him out and he slept most of the afternoon.   His blood pressure was low most of the day and they gave him several IV's and talked about moving him back up to the ICU for pressers.   

     But after a miracle of 12 hours of sleep (a unicorn event in a hospital) today is a MUCH better day.   He was super groggy and didn't want to wake up but he had a great OT session with Heather.   He was able to form sentences and is much more aware of where he is and what happened.  While words were still hard,  tears came rolling down his cheeks as what he realized what he has been through.    Heather  (the OT) was super sweet and said "tears are therapy".   She lowered the bed rail and encouraged us to hug.   What a sweet and tender moment.    

     Chris has had a few visitors today, and it just like the adventurer Link from Zelda, it filled my heart so much to hear him carrying on a conversation.    Not just words, but full sentences that correctly fit with the questions.  He may have struggled at times to come up with the right words, but he's come a long way.   As well, he was able to lift his hands to grab things, and joy filled my soul to hear him laugh.    I also gave him a banana to eat and unlike yesterday where I cut it into pieces and fed it to him, I handed it to him unwrapped and it was quickly devoured.  

    We had a touching conversation where he asked what happened and I explained the past few days.   He so tenderly said "I'm Sorry!".   The emotions of the past few days for me came one at a time, but for him I can imagine how hard it is to have all of them hit you at once.

      He also had a visit from Betty with massage therapy.  She was amazing,   She gentle rubbed muscles which were tight and sore and he closed his eyes and relaxed.   We hope to see her again.   

      His kidney's are still not doing well, but I am hopeful that with some more patience and time they will realize that it's time to start working again.   The weekend is perfectly timed that hopefully it will be a little bit quieter and he can get the rest he needs to allow things to improve.   Today was able to tell me "I love you".  It was a good day.   

Life in the Dark

   I was right.   Something was wrong. Very wrong.   Yesterday was another insanely tough day.    Jane,  the occupational therapist who had been working with him regularly the past week is probably the best besides me to notice the difference.   Instead of working on trying to get him out of bed, she focused on cognitive function.   Asked him lots of questions.   Some he got right,  some he got wrong and some he didn't answer.    He struggled to move his arms and tended to favor his left instead of dominant right hand.   She encouraged me to keep trying to engage him.   After she left he was tired and it got harder and harder to wake him.   I tried.  His nurse came in and noticed that things were worse.   I'm so grateful for his concern.  

     He paged the doctors and people kept coming in to ask him questions.    They decided to call a "brain attack" code.   Before his room and the hallway filled doctors and nurses, a social worker came and sat by me.  She said she works with the ICU team and they told me who each of them were and what they were doing. They needed an iv with a larger needle and tried to get that while hooking him up on portable monitors.   They whisked him away for another CT and also an MRI. While his room was empty I took time for myself to recenter.   

     The CT and MRI again ruled out a stroke.    They brought him back to the room and ordered an EEG to check the electrical activity in his brain.   Took quite a bit of time to hook him to all of the wires.   They pestered him with more questions,  he didn't respond.   They had me hold his eyes open, which he hated.   The results showed no seizures, but swelling on his brain.   They talked about moving him back to ICU but he didn't meet the criteria.   So he stayed here and they monitored him more regularly.   

     The rest of the night was fairly quiet and uneventful.    We both got a little bit of sleep.  

     This morning we've already had a ton of people in and out.  He's been asked all of those questions like that we normally think are annoying,  but are important.  "Do you know your name?"  "Do you know where you are?"  He is a bit more awake and will occasionally answer "Yep" but still struggles to move or get words out.   

    The belief is that as his kidneys have been failing, medications have built up on his system.    They mentioned they may do dialysis but his blood pressure is low again that he would need a different type.   It would also mean moving back to the ICU.  

     With everything we've been through,  it continually confirms to me just how amazing the human body is.   It is simply miraculous and divine that we are alive.  When things go wrong, which for us has been a too common occurrence, I continually astonished with just how much it takes to simply be alive.   It's a tough fight, but I can see how much he is fighting now to come back to me.  The only two words he's put together are "Hey, Baby".   He knows who I am, ❤️ keep fighting Sweetheart!

   

Cancer Never Sleeps

 

  As I sit in an empty hospital room, I have another to add to my list.   "Cancer never sleeps."   Something has been "off" with Chris since this afternoon.    When PT came to work with him in the afternoon he was too tired, so she said she would come back.   I encouraged him to order something to eat so he would have energy.  As he ordered room service he struggled for words and said his room number four times.   I was worried,  so I paged his nurse.   She asked him questions and checked some things and also brought in the doctor who did the same things.   He was slow to answer and struggled for words.  His oxygen was low and his heart rate fast and he seemed a bit clammy.   They said just to watch him.  

      Shift change happened,  his new nurse asked him more questions and he was giving odd answers,  but they just pushed it off and said let's watch.  

      As we tried to go asleep I just couldn't help but think that something was wrong.   He would have moments of lucidity,  but couldn't remember short term things.   He lacked the symptoms of what I know of for a stroke.   

     I felt strongly that I should ask for something and suggested a BMP (basic metabolic panel).   They had given him potassium this morning because he was low, and since he previously had been drinking something to lower it, it seemed like something had shifted.   He said he would ask the doctor.  But insisted they would run labs again in the morning, but that was 7 or so hours away.  

     She came in and did an accessment and I explained my concerns.    She said she would run a blood gas panel, which would have the electrolytes I was worried about.    They drew the labs which came back fairly quickly.    While I googled the results like oxyhemoglobin, HCO3, and hematocrit that were out of normal range I anxiously waited for them them to make the next move.   

      It took longer than I expected,  but they came to whisk him away for a CT scan.  They took him away at 11:18 and I watched the seconds tick away until they finally brought him back about 15 minutes later.  

     He's now peacefully sleeping in bed, which is very unusual for him.  He much prefers to sleep in the recliner.  I am tired and worried, but suppose I will try to do the same.  Not sure what the morning will bring.   

To be continued...