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...

Re-Wired

    Last night I went home for the first time since Chris was admitted, it always feels weird leaving without him.   But it was so refreshing to get a nice shower and fresh clothes.   The hospital does have laundry and shower facilities for family members which work in a pinch, but its not nearly as relaxing as being home even just quickly.   As I drove back to the hospital it happened to be just about the same time in the evening as when I drove up last, it was comforting to know we are not in as critical of a place.  Hundreds of people at the hospital have helped us to get this far, and we know hundreds have also been praying for us.   It's very humbling.  

      Test results for the staph infection finally came back clear.   The antibiotics worked!   Huge win!  Out of caution they did remove his (subcutaneous) port on Tuesday.   It served him well for 1,720 days.   After his "port holiday" they placed a picc line.   They do the sterile procedure in the room.  It was very interesting to watch. They placed a device on his chest which shows on a screen where the line is going.  It is a fairly new technique which has improved correct placement.        Unfortunately they were't successful the first time,  and the second time struggled to drop into place.   They had to order an x-ray which showed it was a few centimeters away from his heart.   Enough for antibiotics and labs but not for chemo.  

     So, yesterday the "boss lady" who trained the three techs from the day before came to do a "re-wire".   True to Chris fashion, something that they very rarely do.  Using the same entrance,  they removed the internal line for a longer one.   Chris said it felt super weird to feel it snaking through his body.  As well, they did it as a double lumen instead of a single so it will be more useful.    It's oddly placed by his elbow, but with the dual lumen they were able to remove the IV line that was placed in his other arm by ICU.  He's been poked a ton this visit as the one from the ER was replaced because it was very finicky.

    With the infection cleared, they are ready to clear him to go home on IV antibiotics for a month.   Depending on insurance it will either be a continuous IV that a nurse comes to change occasionally or I will be trained on how to do it.  

     The infection however really wiped out his energy and strength.   He is making progress every day with PT and OT, but basic things are a struggle.   They want to release him to a rehab/nursing facility.    It was hard to quickly search through reviews to find some we thought would work.   So when they came back and told us our first three choices were full and we needed to pick again it was discouraging.   Trying to pick three more feels like russian roulette.   The pandemic and staff shortages clearly have them stretched thin and the weekend ended up giving us a few more days inpatient to work with therapy.    

     We feel hopeful that if we could just ensure a decent night's rest he will continue to improve, but those are rare in the hospital.   We would love to skip the facility and come straight home.  

    We are very blessed that we've been able to make improvements to our house that makes it so Chris has felt safe thus far, but this is a different challenge.   The weakness and fatigue is so much more profound.   We would much prefer for Chris to be able to return home, but doing so now would be too risky.   As you pray for us, pray for his strength and endurance to return and an added measure for me.   Even if a rehab facility is necessary, these will ultimately get him home faster.   Strength for me as well as I step up even more as a nurse.  

The Woods

      On this holiday weekend where many people are enjoying one last camping trip at the end of the summer,  we instead hung out in woods of a different kind.  Things are improving and we are no longer deep in scary forest with fear and uncertainty lurking.    Instead we have traversed the deepest and darkest of the woods and have reached a clearing.   Still surrounded by tree's but with light filtering through the trees.    Not quite out of the woods yet, but away enough from danger that we feel safer.   His blood pressure was finally able to stabilize and he no longer needs the norepinephrine to keep his blood pressure up.  It's still low, but not dangerously low.   With that stabilized  we were able to move from ICU to a normal room on the BMT floor.   He no longer has a blood pressure cuff monitoring every fifteen minutes and they were able to remove the "tele" (telemetry) to monitor his heart.  

     However, the cultures they took on Saturday came back and still show infection.  The infectious diseases doctors are concerned.   They were hoping that the antibiotics would have wiped it out by now.   Since staph is "sticky" and likes to stick to plastic and also other places in the body, we met with the doctors from Interventional Radiology to remove his port.  He has had it for almost five years and it's been a huge blessing so we are sad it has to be removed.    We thought they were going to remove it today, but with it being a holiday it got pushed back to tomorrow.   He will have a "line holiday" for a couple days and then they will probably put in a PICC line.   They mentioned today that he will likely continue IV antibiotics once he returns home, likely via home health nurse.  Then eventually he can probably have a new port placed.  

    As well, while in ICU they did an echo (an ultrasound of the heart) last week to check and see if the infection that has stuck to his heart valves.   They weren't able to get a good picture so they want to try a different approach.   They want to sedated and intubate him so they can do the ultrasound internally through his throat.   We are so protective of his airway after all we've been through that this option is a bit terrifying.  They did more cultures this morning, but they take a couple days to come back so there is a frustrating delay to know the current state of his infection.  

    Yesterday overall was a relatively quiet and simple day which allowed us to rest.   In the morning there was a nice surprise when someone came into our room saying she had a gift.   A cute basket filled with fresh fruits and snacks.   As well there was a bag of freshly baked chocolate chip cookies.   I offered one to Chris and a huge smile crossed his face.   For a moment I could tell he was able to escape the current situation.  He closed his eyes, enjoying completely the moment.      As well, there was a sweet card with this beautiful painting.   While I am blessed to know that there are many people that I could call on at any time day or night, sometimes moments of need come quickly and suddenly that there simply isn't time for earthly help.  

     While cancer doesn't observe holiday's, the hospital does and it was very quiet today.   We were just relaxing, minding our own business when Chris was suddenly woke up emptying his stomach.   The two different nausea meds haven't helped.   In between bouts, Dr Sborov stopped by.   He checked on the progress from this weekend and we caught him up with what we knew.   Knowing that we have discontinued chemo treatment to do anti-biotics in the past, I wondered if the 4-6 weeks of antibiotics they want to do for this infection would require the same.   He confirmed what I suspected.   We are between a rock and a hard place.   The myeloma is also cluttering up his blood which weakens his immune system.   I'm going to leave that ball in his court to figure out.   For now I'll just do my best to try and help Chris through the night.    I think it's going to be a long night.   

     

    

      

     

     

How Low Can You Go?

   I guess I should have known better than to tempt fate by naming our last blog "Limbo".   It apparently tempted fate to lower the bar and push us even lower.   Nothing says Happy Birthday quite like a good friend and a team of full of firefighters in your room in the early hours if the morning helping you up off the floor because gravity + cancer has kicked you so hard you can't get up.  

     I should probably back up a bit, it's been a bumpy ride.   They finally got the approval and we started the Bendamustine last week.   When checking in for an appointment they were worried about how he was doing with such heavy tumor burden.   They talked about doing radiation, but while waiting for a consult for that they decide to have him to do a pulse dose of dex starting right away.   Four days of 40 mg of dex.   What a way to spend the weekend.   It was crappy.  But we were optimistic it would help.  They wanted to check on his blood numbers so scheduled an appointment for September 1st.   He felt slightly better on Monday and Tuesday we tried to just chill.   .  

    There is a common quote that is seen around the hospital about what cancer cannot do.   To be honest, it isn't my favorite and every time I see it I quickly pass on by thinking they made a good effort but missed the mark.   I think perhaps I should start one of my own.   Cancer pushes you to your breaking point, over and over.   Cancer has it's own timeline and will cause you to lose all track of time.   Cancer will scare the crap out of you.   Cancer observes no holidays.   Cancer is ugly.   

     After an eventful early morning we both were exhausted so we napped.   Then we had a nice visit from Chris's niece Carmen and her young baby.   Some neighbors brought over some delicious cookies and custard.   Then we napped some more.   He had a quick phone call with his Dad and his friend Scott.   Then he napped again.   I woke him up so that he could eat some of the amazing enchilada's that his sister in law from Montana figured out how to ship down to him.   Then afraid of going back to bed, we slept in the front room.   

      I had taken some time off work to be able to celebrate his birthday, and yesterday worked a half day in hopes we could do something fun.   Instead he again slept most of the day.   We attributed the tiredness to the chemo wiping out his numbers and gravity kicking his butt.   He said he was too tired to make it to the appointment, but I felt it was important for him to go so we slowly made our way to the door.   He was exhausted by the time we made it to the kitchen and we probably should have turned back.  But I encouraged him on, hoping that labs would help know how to help him.   

    He made it to the car, but was too exhausted to get in.  He crumpled slowly to the floor, pleading with me to call 911.  I don't make a lot of phone calls on my phone and my brain struggled to figure out how to dial.   Our connection was choppy and tears streaming down my face, it wasn't my best moment.  But the dispatcher sent help our their way and ended the call.   They took forever to arrive, but some of them recognized us from the day before.  While we waited I texted Dr Sborov unsure of what to do once they arrived.   They offered to bring him into the house, but I decided that even though that's what Chris would have preferred, the ER was probably best so that we could at least get labs to know what the problem was.   I threw our emergency bags with who knows what into the car and followed the ambulance to the hospital.  When we moved into our house I remember saying that it was nice to have a hospital so close, we had no idea how often we would be there.

     I had to wait in the waiting room while they got him situated.  Then eventually they brought me back.   He was a hot mess.   His blood pressure was super low, his pulse high and they couldn't keep the heart monitor stickers on because he was drenched in sweat.   They were drawing labs and cultures and started him on anti-biotics.  We eventually heard the words septic shock.   Someone came in and talked to us about admission.   They don't have overnight rooms in the hospital, so I thought another ambulance ride was in the works.   Instead we ended up hearing about AirMed.   Still struggling to stabilize him, they moved us into a bigger room with cabinets filled with all the necessities.   A chair for me sat on the side in the middle of the floor away from the cabinets.  I wrapped my arms around his discard shirts and tried to be out of the way.   With tons of people in and out, they hooked him up to more monitors.   The helicopter crew arrived and they were still waiting for confirmation for a room, but it eventually came.   Shortly after he was loaded in and took off.  It was a ten minute flight just about sunset.   

     I carefully drove up to the hospital, arriving about an hour after him.   He was all situated and had even had a visit from Dr Sborov.  Who according to Chris told him that he was very sick.  Chris was exhausted but the medications they had put him on had stabilized his blood pressure.  It was a long, sleepless, but relatively quiet night.   

     Today has been a busy day but little bit by little bit they have uncovered pieces of the puzzle.   The infections has been determined to be a staph infection.   They aren't quite sure where it came from. They tested for MRSA which luckily has come back negative.   He is still on medications to keep his blood pressure up.  His kidneys are angry, possibly more from TLS (Tumor Lysis Syndrome) which causes imbalance of your electrolytes as the dead tumor cells are processed through your system.  

     There were a ton of  people in and out of his room today, including Dr Sborov and Grace.   He's satisfied with the progress that is being made. I could see the cogwheels turning in his head as he contemplated the bigger picture.   He also called me Captain Obvious when he asked why Chris was still on Vasopressors and I told him it was to keep his blood pressure up.   He calmed my worries and told me multiple times that I did the right thing.  However I think my heart sunk a little and I was reminded again of how grave the situation is when he said that Chris wouldn't be around any longer if we hadn't acted when we did. 

    It feels like an eternity since we started making the journey out to the car, but in reality it was just 24 hours ago.   Thank-you to to everyone for your love, prayers and support.   We aren't out of the woods yet.  He will be in the ICU until they can get his blood pressure stable without vasopressors, then likely moved to a regular room until he is strong enough to go home.   With likely 4-6 weeks of antibiotics.    

    

Limbo

     It's been a long month.   We were planning on doing T-Cell collection so that his cells could go off on an adventure to be trained how to kick butt.   However, we found out the week before that insurance denied the treatment.   We have been very fortunate as fighting for treatments isn't something we've had to do.   CAR-T has been FDA approved for myeloma for a year, but it's not on their list of approved treatments yet.   Well, unless Chris had lymphoma.  So frustrating!   One think we were still trying to wrap our heads around, was that after doing CAR-T, there is no chemo until you relapse.   No chemo, something we never thought was a possibility.   We understood when he was diagnosed that he would be on chemo until he died, so this was something we hadn't even thought about.  They are appealing and perhaps it's still in the future, but for now... for now we are in limbo.   

     He did one cycle of PVD (Pomylyst Velcade Dex) but ended up skipping the last week of Velcade.  His Lamda Light chain and M-Spike numbers showed it wasn't working and the Velcade was already causing more neuropathy.  Losing the ability to feel more of his fingers for something that wasn't controlling the rampant myeloma cells.    The decided to start yet another chemo (the 5th so far this year) of Pomalyst Bendamustine Dex.   He started the Pomalyst last week and we are still waiting for insurance to finish approving the Bendumustine.  We don't need another PET scan to know what it would show.   The masses that we fought so hard to get rid of with two cycles of intensive chemo earlier this year are clearly back and growing quickly.   It's taking a toll on has body (and spirit) and it breaks my heart to see him suffering.   

     When we learned about being  denied CAR-T, Dr Sborov mentioned a new drug called Teclistamab that is being FDA approved in September.   It is a T-cell–redirecting bispecific antibody that targets both CD3 expressed on the surface of T cells and B-cell maturation antigen expressed on the surface of myeloma cells.   In simple terms (if I explain correctly), it locates the myeloma cells and grabs it with one hand.   Then with the other hand, it grabs a T-cell.   It brings them together and forces the T-cell to recognize and attack the myeloma cell.   Sounds like a great new option, but if it's just being FDA Approved next month, how long will insurance drag their feet before allowing us to use it.  

     So as I type this and know that September is just over the horizon, we are so very anxious to know what comes next.  Not because we want to know what chemo he will be doing, but to hope that we can move out of this awkward limbo we've been in since May where we hang on the mercy of some pencil pushers deciding on their own time frame when we can make the next move.   

     To end on a different and not so depressing note! Chris's birthday is next week.   It would make his week and hopefully help us end the month on a positive note.   Send a text, an e-mail, a card, a letter, a picture, a meme, a facebook message.   Let me him know you are thinking of him.  Doesn't matter what day (we celebrate all month at our house), just when you have the time.   

     

Unexpected

   Last week we were thinking that the next few weeks would be busy with tests and possible t cell collection, yet a bit of a reprieve from the difficulty of the past month.  We were looking forward to a relaxing three day weekend.     Instead, after an appointment with his doctor we realized that we needed to take his recommendation.   In order to be strong enough for what's to come we needed to sacrifice our weekend to a hospital stay.   He's weak, tired and the myeloma is raging doing who knows what damage.   As well, this past round of chemo has caused him to yet again retain a lot of fluid.   About 60 lbs in the past 6-8 weeks.   We checked in on Friday and they are still vague about when he might be able to go home.   In addition to starting a new chemo (Pomylyst Velcade Dex), they have been quite aggressive with diuretics, which have caused his kidney's to be irritated.   His potassium spiked high so they were worried about heart issues and had him on "tele" (constant heart monitoring to watch for heart failure).   No hospital stay is pleasant, but this one has been pretty miserable and we are both so tired.   I feel bad because I know I've lacked the patience that Chris deserves with what he's going through.   It's not that I'm mad at him, just feel extra powerless sometimes to be able to relieve some of his suffering.   

     I've spent time trying to learn more about CAR-T.   In the online support groups that I'm in, it's something that is talked about frequently and with so much hope.   Many of the articles I've read have had similar optimism, but they also describe it as a "last chance".   His team hasn't said that to us, but we also know that "hope" is  very real factor in the battle against cancer and they are likely very mindful of that.   In a Q&A session with Dr Sborov recently, he talked about some of the new drugs that are being developed.   Multiple Myeloma treatments (and I imagine all cancers) are making great advances.   We live in an exciting and terrifying time.   With all the new drugs, they are still trying to out how and when best to use them, and things are constantly changing.  We will continue to put our trust in Dr Sborov and his team and pray that God is guiding his decisions.   

    It's very possible that one of our next steps is going to be a clinical trial.   A chance to try a cutting edge medication.   Something that fights in yet a different way.   I'm very grateful that this step doesn't seem as scary as it could be.   Many years ago God put in my life a friend named Rachel.   She was my visiting teacher when the only thing Chris was fighting was a brain tumor.   Of all places, she works with the clinical trials department.   Not sure if it will work out that she will be working directly with us if we end up in a trial, but I know how dedicated she is and can only imagine all of her co-workers are.

    So while today may be the Mondayist of Monday', we may soon be Pioneer's of our own forging a way though an unknown path.   

A Million Little Things

   

    We knew going in that this chemo (SeliKD) would be tough, so we found a show that we could watch to take our mind off of it.    We probably weren't successful in doing that, as the show that we picked "A Million Little Things" ended up being a show about friendship and loss, in which two of the characters battle cancer.   Everyone's battle with cancer is different, but it was interesting to see how they chose to depict it.   Some things we felt were fairly accurate and others missed the mark.  The theme of the show, friendship and relationships with others was complex just like life.   While we trudged our way through yet another chemo, it again was amazing to us to blessings we have from our friends and family.   With numerous moments these past two moments of people showing up in our life at just the right moment.   Text's from family and friends lighting up a particularly tough day, surprise packages or cards in the mail, a hat from a concert Chris couldn't attend, pin from a particular Golf Tournament, delicious treats from a neighbor, simple chats about Star Wars and other funny things. One favorite moment was when a nephew sent a video of one of his kiddos saying "Unc-Chris", the timing was impeccable and it brought tears to our eyes.    Throughout this journey and especially these past two months there have been a "million little things" that have helped us at just the right moment and in the right way.    Thank-you!

    The first month was only Krypolis and Dex and was tolerable.   Labs showed that just those two wasn't enough and knowing it was the heavy hitter we hoped that adding Selenixor/Xpovio would start things trending the right way.   He started it the end of June, and it has been a beast.   July so far has been rough.   Even with all the preventative medications that we added, the side effects have been miserable.  We don't even want to think of what it would have been like without them.   This week was the 3rd week of the beast named Xpovio and we wondered if we could survive another week or cycle of it.   His light chains came back yesterday and they were even worse than last time.   As well, even without the PET scan which was planned for later this month we can tell that the masses in his right leg are likely growing, and the mass on his upper left abdomen is back, probably about a centimeter in size that we can feel.   We met with Mary today and she agrees.   This treatment did not work.   We were both very relieved when she said he could skip the dose that was planned for next week.

      So here we are at the end of the  "farsee" looking to what comes next, looking a bit ahead.    They are consulting about what chemo will actually come next, but whatever they decide it will be considered a bridge chemo.   Something to hold him over until the next big step, it's a big one and not what we were planning for.   

 

    He is being given the opportunity to do a treatment called CAR-T.   It is an innovative and fairly new treatment.   It's only recently been available at Huntsman, and slots for it are extremely limited.   Many patients often travel out of state to be able to participate.   It's somewhat similar to a Stem Cell Transplant, but even more complex and very personalized.   It's an incredible opportunity.      

    Pending testing and insurance approval, in August sometime, Chris will do collection to harvest his own cells.    They will collect T cells which are are part of the white blood cell system  (The video below is short and very fascinating).   They are kind of like the defenders of our body that are trained to be able to fight. These cells will be sent to a lab where they literally put a receptor on the T cell, called a Chimeric Antigen Receptor.   Those T cells are now specially trained to recognize the cancerous myeloma cells, will go and find it and and help destroy it. It essentially trains one's own immune system to destroy cancer cells.   Pretty crazy, right?!   There is more that I'm sure we'll learn and try to share.  It takes about a month for them to create the trained cells, but the cells will be transplanted back sometime in September.   

A Farsee

    The extra time to recover between the last cycle and whatever is next has been wonderful.  This break from chemo has allowed time for his immune system to recover and for the antibiotics to help with his infection.   With a stronger immune system, we've taken the opportunity to see people we love and haven't seen in quite some time.   Chris got to meet his grand-nephew and niece for the first time, time with children and their laughter and snuggles was great for both of us.   As well, my aunts helped me arrange to surprise my Mom (and Dad) for Mother's Day.   I also was able to attend a work event which I otherwise would not have attended .   It's been a busy couple weeks.   

      The time off has been very nice, but we also were very anxious to know what is coming next.  We met with Dr Sborov and his MA, Mary, last week and can see further into the distance than we have pretty much all year.  We've been living just a few days or a couple weeks at most.  

     I am a planner.  I love being able to be prepared for tough things with ways to make them easier, or to have fun things to look forward to that help counterbalance all the tough things.   With the unpredictability of cancer I often question what is better.   Is it better to plan things to look forward to and risk having to cancel them?   Or is it better to not plan things to avoid being disappointed?   In reality it's likely mixture of both.   

      We talked with Mary for quite a bit about a few options.   There were more options than we expected, but we both felt prompted that the right decision was ...

Carfilzomib / Kyprolis

Xpovio / Selinexor
Dexamethasone / Decadron

     Carlfizomib is one of the medications from the KDCEP that he has had for the past 2 cycles.   It is an infusion that will be weekly for the next 3-4 month.   Each cycle will be 3 weeks on and then 1 week off but with labs every week to make sure everything is alright.

    Since it seems no cancer treatment is complete without it, he will take dex.   They will also be adding several other medications to try and prevent or manage the side effects.   

      After the first cycle he will start Xpovio.  It is a pill that he will take at home following the same schedule as Carlfizomib.  It is a fairly new drug, in a class of medication (Called SINE).   I didn't understand much of my high school biology and this is much deeper than that.  Perhaps as a bit of a sign of how far we've come, when Chris met with the neuro ophthalmologist in the fall of 2017 (before his myeloma diagnosis) I remember my brain distinctly turning off as they mentioned lots of "scary words".    This time as they were trying to explain to us that it is a different type of drug and started to mention scary words like nuclear and blood brain barrier instead of my brain turning off completely it simply stuttered and then moved on.   It would take a lot for them to explaining to us how it works, and knowing how it works isn't important to me as much as that it should.    They say a picture is worth a thousand words, so here's a picture.   Our choice is to simply realize that there are brilliant people making huge strides in cancer treatment.  

    This time Mary did a great job of preparing us with a better knowledge of what to possibly expect.  Instead of going a bit blind like we did for the last chemo this time we can see almost a whole season ahead.   She prepped us for the side effects and how often we will likely need to be at the hospital for treatment.  They will follow his myeloma labs results very carefully to make sure it appears to be working and then after three cycles we will do another PET.  They do anticipate much of the same side effects (GI Issues, Fatigue, etc) but will send us home with medications to hopefully prevent what they can.   It's likely not going to be the easiest summer, but it should be less intense than the year so far.   

      As well, they are optimistic that this will keep his myeloma in a stable or possibly improving place.   It will give us a chance to prepare physically, mentally and emotionally for the next step.  In a surprise turn of events, for the first time since that I can recall, the next step of a possible stem cell transplant, actually feels OK.   But that's a "farsee" too far, for now we'll just be grateful to have an idea of what to expect for the next couple months.

    What is this "farsee" you ask?   On Chris's mission it was a measure of distance.  Where you are standing, look into the distance, and as far as you can see, is a farsee.  People would say "Go two farsee's and turn left at the Magnolia tree, then another farsee and turn right."   It's very fitting for cancer.   Sometimes it is having the strength to make it to the next moment or hour, sometimes it's having the endurance to make it another day, sometimes it's the ability to see a month or two into the future.   It's about doing what you can, when you can, however you can, for as long as you can.