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.    

KDCEP Cycle 2

    About a month ago I wrote a blog which you may have missed called "The Calm".   There wasn't much to share, just that we were waiting, so I didn't post it to Facebook.  Since then Chris was able to get the PET scan (the second this year) we needed.   It showed that the first cycle of KDCEP had worked.   One mass had shrunk from 48x35 mm to approx. 8x18 mm.   A huge improvement!     As well the SUV (a measurment of how active) went from a 5.3 and down to 3.    The numerous masses in his lower abdomen had  "improved significantly" but there were small residual ones remaining.   

     So, we ended March by starting another round of KDCEP.    It again was a 4 day continuous infusion of chemo.   However this time we were able to complete it at home.   While daily trips to the main Huntsman were needed to change the chemo bag out for a new one, being able to sleep and simply be at home was a huge blessing.    They slightly increased the dose.   They also anticipated his blood numbers to drop to the point where he needed treatment, so we made regular trips for testing but, just like the first cycle, no platelets or blood was needed.

     One the 22nd, he had yet another PET scan.   We were both optimistic that this one would show that there were no lesions left, but there is still a persistent one.   It now measures 2.2x.8 and SUV of 2.6.  Chris had also said he would be willing to try a bone marrow biopsy again.   It was scheduled for the same day, but when the machine broke down before we arrived and they had to cancel our appointment. Chris took it as a sign and decided not to do it.   

     We met with Dr Sborov again last week.   He has suggested strongly that he wants to do a bone marrow transplant.  We both have reservations and aren't 100% that this is what we feel is the right thing to do.   It comes with significant risks.   He did also mention clinical trials as a possibility.   The two cycles of KDCEP came with tough side effects, but he was very pleased with how Chris was able to tolerate it without major complications and that the masses have shrunk so significantly.  

      We are so very grateful that it worked as well as it did.   But it did come at a cost.   His neuropathy (constant burning, numbing, stabbing and tingling pain) is much worse and now spreads nearly to his knees.   In addition it also affects two fingers on each hand.   It's very painful and has made many things a challenge, especially sleeping.  As well, he's battling an infection that required treatment and antibiotics.   He's slowly recovering from the fatigue that also deepens as the cycle goes on.   It's pretty safe to say that we're both drained mentally, emotionally and physically.  So when Dr Sborov's plan was to allow some time for Chris to recover it didn't take persuasion on our part.    Although we had a small break in January, myeloma has kept us quite occupied since this fall so we are very ready for it.  I was searching for a good quote and think I found our prescription...Play, Laughter and Joy.   

Any ideas on where to get it filled?

 

     

The Calm

     We met with Dr Sborov last week and he confirmed that he would like us to select door #1, another round of KDCEP.   Even though all signs that we see show that the first cycle was very successful, he wants push a little harder and hope that Chris can tolerate a larger dose.   They had mentioned last month, that if we did a second dose it likely would be harder than the first.   Knowing they also want to increase the amount of chemo is discouraging.   However since it's hard to know where a myeloma cell may be hiding, they want to hit things hard to kill anything they can.  He, like us, is anxiously waiting for the PET scan and would love the valuable information it can provide before moving forward.   The first round did a number on his glucose levels, and we've been learning the world of insulin trying to get it down.  Chris hates doing shots, especially multiple times a day, but is taking it in stride.   We finally are seeing progress and are optimistic that we'll finally be able to get the PET scan later this week.  

     So for now, it's just the calm before the storm.    While the storm clouds and lightening may roar and thunder in the distance, for now we're grateful that the wind has been taken out of our sails.  The water is calm and we have a few days to just coast along.   Today after I finished work, we went for a drive and enjoyed a beautiful spring evening.    Warm weather and sunshine, it was wonderful.

    While I have a tendency to want to look ahead and plan, this week this is my focus:   

    Live in the moment and embrace the ordinary so that this week can be extraordinary.  Take time to make some happy memories, laugh and enjoy the calm.   

Let's Make a... Deal?!?

   It was just a month ago that Chris had the PET scan that set into motion the craziness of the past month.    It seems like longer.  For the past two weeks we've been making regular trips to the hospital to check his blood counts, anticipating that they would hit lows that needed treatment (shots or blood/platelet transfusions).  It's not common, but typical to the Chris way of being rare, his never did drop too low.   

      There were a couple things about being in the hospital for this chemo that were difficult.   One was that in an effort to protect his kidney's they were flushing them like crazy.   One day they measured a total of 20 liters of fluid.   That is a lot of fluid and made for miserable days and nights.   Another challenge was the high dose steroids.   Dex is a beast!   It can make you very irritable, which Chris used a ton of willpower to overcome.   It keeps you from sleeping.   It also can cause havoc with your blood sugar.  So he was constantly being poked to test and treat that to try and keep that in line.   

   Unfortunately his endocrine system which is often already overworked because of his brain tumor, has not recovered well.  Chris has been working with his primary care doctor and insurance to get approval for the medications to help.   It's taken him countless hours and numerous phone calls and, even then, the co-pays are more than his chemo.  He's been doing everything to get his glucose levels down, unfortunately they were too high to be able to complete the PET scan and had to reschedule for next week.  However, while we may never know the reason, but we both felt impressed that perhaps there was a reason.  Maybe it was the snowstorm, maybe his body needs a few extra days to recover.   Patience and endurance isn't always easy but we are choosing to trust in God's timing.   Waiting also means that we still must wait to know what comes next.  

    However, we believe there are three potential options.        

    

    #1 - Redo another cycle of KDCEP to knock down any potentially remaining masses.   Possibly done outpatient.  

     #2- Start a new chemo.

     #3-Prep for a Stem Cell Transplant.   

    While they each come with their different challenges, risks and benefits.   I think I'm hoping for option #2.   They said that a second cycle of KDCEP would likely be harder than the first.   So hopefully one cycle of KDCEP was enough to wipe out enough of the masses.   

     Another side effect of this chemo was that Chris could lose his hair.   It doesn't always happen, but it was likely,  and it started to fall out on Sunday.  Last night we decided to shave it, as it was falling out all over and was becoming extremely itchy.  It's amazing to me that we've been able to get this far into his battle with myeloma without this side effect.   What a blessing and sign that cancer treatments are rapidly evolving.   However it's harder than we both anticipated.   Chris mentioned that every time he see's himself in the mirror it doesn't feel like his reflection.   I think for both of us, it somehow makes the battle feel more real.   It's likely not logical, but difficult emotions often have a mind to do their own thing.     But...Chris loves to collect hats so this will give him lots of opportunities to wear them.   

 

Gratitude and Joy

      

     Aside from the few months following multiple myeloma diagnosis, the past few weeks have easily been some of the most difficult that we have faced.   Many tears have been shed and we've both felt pushed to the brink of exhaustion.  

       This week luckily has been a little easier.   Chris finished up his 96+ hours of chemo on Sunday night and we could have come home, but there wasn't anyone around to be able to make that happen.   He pushed to make it happen on Monday morning and we got home that afternoon.   Sleeping in your own bed (not being awoken numerous times throughout the night) is a powerful healing tool.   

     We went back to "the mothership" on Wednesday for more chemo.   Because this chemo attacks all fast growing cells, which include good and bad cells they are watching his red and white blood cells.   They were surprised that they hadn't "bottomed out" already and anticipate that it will happen soon.   He may need blood or platelets and he's already been given separate shots of neupogen to encourage white blood cells.    They want to monitor him carefully, which we appreciate, but to them that means there at the clinic and not at the satellite location in South Jordan.   He was exhausted from the trip up that day, so we pushed back and were able to arrange for the next visit and several of his daily visits this coming week to be in South Jordan.   

    I recently posted about spring flowers on Facebook and asked everyone what their favorite flower or season was.   It was so fun to read everyone's comments.   My aunt commented "I love them all as the variety of each flower makes the other flowers more beautiful."   The same can be said of friends and family, each one unique but bringing their own beauty to the lives of those around them.   

   We are so grateful to all of those who have helped to lighten our load these past few weeks.   It is often the text's, cards and thoughtful gestures that brings joy and gratitude.   We are very blessed to have friends and family reaching out helping to lighten our load and let us know we aren't alone.   

    Another thing to be grateful for... we know it's working.  The egg size mass on his upper abdomen which we named his "turkey timer" has slowly been melting.   It's now  harder to find, flatter and likely about the size of a small almond.   We are confident that his next PET scan,  sometime in the next couple weeks, will show that the others have also shrunk.   

The Time Warp

   

     We have determined that there is a time warp at the hospital.   Where when you enter, time has weird tendencies to go fast, slow and everything in between, but mostly slow.   Where a day can feel like a week, and sometimes an hour feel like just a moment.   Where you have to think really hard to try and remember what day of the week it is.   The world on the outside is proceeding as normal and you're in a weird version of the movie Groundhog's day.  We have talked with several of his providers and they agree that it affects them the same way when coming to work.   

    Here we are on Friday evening, together at Huntsman.   One of our worries when we knew Chris was going to be admitted was if I would be able to be with him and for how long.   We haven't had to be apart during his inpatient stays and we knew that restrictions were still in place.   We were so relieved and grateful when we found out that I'm able to be here with him, day and night .   I know that it provides Chris a significant amount of peace and comfort to have me here.  It relieves so many worries for both of us.   It's also so helpful for me to be able to know what's going on and stay caught up with and on top of the medications that he is taking.     It's also nice that I am able to bring a few things from home to make the stay more comfortable and provide relief to Chris in ways that otherwise would go overlooked.  Depending on how the next two days go, we are hoping to be back home sleeping in our own bed early next week.  

     There are three parts, but five drugs in this chemo.   Three of the drugs are mixed together in one bag.   It is a constant 24 hour IV.   He is nearly done with the second bag with two left to go.   His team did a lot of researching to make sure that they were as safe as possible.   His kidney's have been damaged by the myeloma so they have adjusted accordingly.  They are watching his levels like crazy and adjusting and adding fluids and other medications.   They test things all the time.   We are in the BMT section of the hospital.   One huge blessing about being on this floor is that his nurse is able to draw labs from his port.   During other stays even though he had an IV line they would still have other people draw labs requiring multiple blood draws and needle sticks.  

     There's still much to learn about what to expect with this chemo.   We know it can cause nausea, fatigue, and other side effects, but they have been great so far to try and prevent what they can.   The fatigue is starting to settle in, but Chris so far is in good spirits.  The affects will continue for the rest of the cycle and we know there is more that we will learn once he is discharged.  I'm sure we will be back regularly for more testing and medications.  His blood counts, such as white blood cells will likely really take a hit and he'll be super immune compromised.   He also may need blood transfusions.   

     So far we're both doing good and are hanging in there.   It may be just the two of us here at the hospital, but we know that we aren't alone and we sincerely thank those who have helped to lighten our load.  Thank-you to those who have sent messages, left voicemails, dropped by cards, sent gifts or money to help lighten our load.    We sincerely appreciate the prayers and well wishes, they really do make a difference.  

     His fragile immune system means we must be extremely careful.   Our efforts to be safe from covid have been good practice and we will be secluding yet a while longer.   We miss seeing everyone, but visits will have to be digital for the foreseeable future.   How blessed are we to live in a world where technology makes this so much easier.   

Bring the Lion Out

     As you may know, in October Chris had a PET scan where they discovered several masses in his lower abdomen.  Since this was the first time he was able to get a PET we didn't know if they were old or new but they were concerning and a sign that DRd wasn't working.   Dr Sborov decided we should change chemo to  EPd and we just finished the 4th cycle.

     In December we noticed a large bump on Chris's abdomen.   It had been accompanied by a sharp cramp so we thought was likely muscle related.   It wasn't discolored or painful and felt like it fit about the palm of my hand.   We watched it, it stayed pretty much the same in size.    His blood markers have continued to be high but not crazy high and we held out hope that the surprise double dose the week of Christmas would knock things into line.   We had the PET originally scheduled for earlier in January but when there were some issues with the financial assistance, we asked them to reschedule in hopes we could work through some of the issues.   The reschedule wasn't until the end of February and the waiting was making us nervous.   Somewhere along the line we noticed a similar bump on his upper thigh which seemed likely to be a lymph node and pleaded for them to push it up.  It was moved to this  past Thursday.     

      The experience in October wasn't the best, so we were both relieved to see the friendly nurse, she recognized us.   She was amazing to work with, very kind, patient and gentle.   He sat alone in the room for an hour with the radioactive sugar flowing through his veins.   Don't think or use your brain they say... haha, that's not an easy feat.   

     The results came in quickly and it didn't take much deciphering for us to know that things weren't good.   The masses that were identified in October have grown. The one on his upper abdomen is approx. 4.7x3.7cm and upper thigh/groin 7.6x4.6.   There are also additional new ones we weren't aware of as well, some that may be on or near his pancreas and down his right leg.   In addition to size they measure this by the amount of uptake of the tracer called  SUV (Standard Uptake Value)  They are also more active.  The original ones when from 7.1 to 16.9.   The one on his upper left thigh is 22.  The ones in his right thigh/pancreas is 26.4.

       His doctor confirmed our suspicions yesterday .   It has turned into a rare aggressive form of called extramedullary myeloma (sometimes known as EMD - Extra Medullary Disease).   Typical myeloma forms lesions in the bones which weaken the bones.   This myeloma is able to exist outside of the bones which makes it difficult to treat.   It's not very common and there aren't a lot of studies or treatments specifically for it.   Dr Sborov mentioned it's taking on characteristics of lymphoma, which sounds terrifying and complicated.   Myeloma is a cancer of plasma cells, while lymphoma is a cancer of lymphocytes. Both plasma cells and lymphocytes are types of white blood cell.  Again, we are so very grateful to have a myeloma specialist who knows what that means.    

      With it being aggressive, we must be aggressive.   They quickly got the ball rolling to start a new chemo right away.  The plan is for a 5 drug combo called K-DCEP.   I solved the mystery of the wacky acronym from the video... drugs always have two names a generic and a brand name.   Since keeping track and trying to learn how to pronounce one is always so  easy.  

Carfilzomib (aka Krypolis)

Dexamethasone 

Cyclophosphamide

Etoposide

Cisplatin (aka Platinol)

(interestingly is a platinum-containing chemotherapy agent)

    It comes with significant risk and it's unknown how Chris will tolerate it. Some people handle it better than others.    It can damage your heart, so we go on Monday for testing on his heart, labs to establish a starting point and a Covid test.   It can also be difficult on your kidney's.   We are super grateful that with the most recent treatment it's really helped his kidneys.   In fact, one time his creatinine was in normal range for the first time since diagnosis.  Having the weekend to process has been helpful but we are looking forward to knowing more on Monday.   If insurance will approve it, it likely will be several days in the hospital.   

 

      Dr Sborov mentioned that depending on the results of the first cycle, radiation is a possibility as is the Bone Marrow Transplant.   

 

       Yesterday was tough and we both cried off an on throughout the day.   My mind was chaotically trying to think of all the things I could/should do to be prepared as well as trying to learn what I could about his treatment and prognosis.    I put together the video above that I posted to Facebook (isn't that song perfect... it's called Lion by Saint Mesa).   I repacked our hospital bags, packed a smaller cooler full of food, ordered groceries, did laundry, cleaned the house, and tried to make arrangements to be semi-away at work. Today we are running errands and went out to to enjoy the beautifully sunny day.  Chris is in good spirits and feeling that the timing is right and things will be ok.  His optimistic and peaceful attitude is helping calm my nerves.   

    

    Finally, several people have asked how they can help.   In the video I mentioned emotional support like cards, texts, messages etc.   Others have asked if we need financial help.   Money or gift cards to help with gas, food, or medical bills would definitely help alleviate stress.  We typically do most of our grocery shopping and get gas at Smith's.   Our names have been added to the temple prayer roll and we have arranged for a good friend to come give Chris a blessing tomorrow.   Prayers have also been a huge lifeline for us, praying specifically for Dr. Sborov to be able to guide us to the right decisions would be one request.

  

     Wish us luck, it's going to be a crazy spring.   

Our address is:

10961 Sunup Way

South Jordan, UT 84009

PayPal: IronLionHD@gmail.com

Venmo: @MACAWesome 

Farewell 2021

  We made it!   As we anticipated, the last two months weeks were challenging.   The new chemo is easier to tolerate, but still comes with side effects and infusion for nine straight weeks was tough.  As well, I wasn't prepared for how much I would miss Christmas's of the past.   Last year with the pandemic we knew going into Christmas that we likely wouldn't be gathering with family.  However losing my grandpa just a couple weeks before Christmas was not expected and took much of the joy out of the season last year.   I'm so grateful for him to be reunited with my Grandma, and that I know I'll see them again.    This year with the shock worn off, and in the trench's of a new chemo, I missed getting together with family more than ever and struggled to find the magic feeling of Christmas.  

      Because of how serious and potentially fatal COVID would be for Chris, and the fact that we've experienced being the ICU on a ventilator, we've tried to be super careful this past two years.   We have been worried illness since before the pandemic, it's now just on hyper drive.  With the vaccine available,  we've relaxed a bit and have had some fun times getting together with just a person or two.   Out of caution we always try to find out if they have been fully vaccinated as we know the risks are lowered significantly.   When planning such visit our brains both are filled with questions as we try and calculate what risk we are taking.   Are they vaccinated, should we ask them to wear a mask, would they come over if they've been sick?  We try to remember to always stay a safe distance.  On a few occasions we've hugged.   I hate that cancer and the pandemic make me second guess that!  

   Early the week of Christmas we ordered a pizza from Little Caesar's.   After placing the order it estimated about a one hour wait (so much for hot and ready).   We waited to go pick it up and when it was supposed to be ready went to check on it.   The girl at the register was stressed and told us it wasn't ready yet and they were out of the crazy bread we had ordered.   While I waited, with my mask, I watched her tell multiple people that they were only taking online orders and that items were out.  She looked so defeated, but just kept on going.   Eventually our pizza was done (a bit overdone actually).   As I got back in the car Chris remarked how he had noticed the same thing from inside the car.   We talked about how staffing shortages and supply chain issues are making simple things so frustrating.   

      The next day for chemo turned out to be one of the most frustrating days in quite a while.   Both sides of his port refused to work.  Multiple nurses tried numerous times to flush it to get it working.   He probably got a liter of saline just from all the syringes.   They were able to get one side just once to faintly show blood return, which apparently was enough to give treatment and injected a medication to try and clean up the other line.    

      As they went to hang the bag of Empliciti I noticed that it seemed extra large.  When we asked why, they did some checking and said it was because his dose was doubled.   To make sure that he wouldn't react to the bigger dose, the treatment time was more than doubled as well.   Ugg!  Not a fun surprise.   Needless to say we were frustrated as we would have come prepared differently.  We had a meeting with one of Dr Sborov's team during infusion.    Just like the poor worker at Little Caesar's, you could tell she was exhausted.   It is obvious and frustrating that things are slipping through the cracks, including knowing that a dose is doubling.    There were tears on both sides of the virtual visit.   Pizza is one thing, but it's terrifying but knowing it's Chris's life hanging in the balance is heartbreaking.   I know I've felt the need to be on top of things, asking the right questions and passing along the right information before, but now feel the weight of that responsibility even more.   

      Near the end of chemo, Chris got a phone call from a friend.   He had stopped by the previous weekend to share an amazing experience, but was calling to let us know he had tested positive for Covid.   We have tried to be so careful, but always struggled with knowing what to do.     We let our guard down and didn't think to ask important questions.   The stress of knowing what could happen was nearly crippling and made for an extra stressful week.   We were looking forward to spending time after Christmas with some family, but instead decided to be cautious and cancelled plans.  Each morning I woke and was nervous to access how I felt, and anxious to hear how Chris was feeling.   The only symptoms either of us had are ones consistent with Chris's chemo (a bit more intense because of the double dose).   

    As if that weren't enough, test results for his myeloma markers started coming back.   Numbers are trending the wrong direction and an M Spike is present for the first time since 2018.  Ugg!  Mary said that the average response time for EPD is 1.8 cycles, and we just started cycle 3.   So perhaps there is still hope for this chemo.   He has another PET scan scheduled for mid-January and we meet with Dr Sborov later in the month.  The double dose the week of Christmas started Empliciti at once per cycle instead of weekly, so we are hoping that this is the chance for the daily at home portion (Pomalyst) to work it's magic.    

  As we now have officially begun a new year and reflect on the past, I'm trying extra hard to see the positive in what have been two difficult years.    There is one clear and obvious blessing that came about because of the pandemic.   I am so grateful for all the time that Chris and I have been able to spend together.   While it may have gone out like a dumpster fire, we were blessed to be together pretty much 24/7.   Despite all the challenges that he has gone through, he is always mindful of me and my feelings.   He is intuitive and always trying to cheer me up when I've had a tough day .   He is such a tender, loving, and thoughtful husband.   I am so blessed to call him mine.  So as we take baby steps into the new year, we are so grateful that we are taking them together.   

 

      

 

    

     

The Way the Cookie Crumbles

     

     For those lucky enough to not be familiar with chemo, it's broken down into 4 week cycles.   We are currently about half way through the first cycle of his  new treatment (EPd).   

Empliciti/Elotuzmab - An infusion given every week for the first two cycles.   

Pomalyst/pomalidomide- A daily chemo that he takes for three weeks, then off for a week.  

Decatron/Dexamethasone- A steroid taken on the same day as infusion.   

    Knowing that things would be "unpleasant" I tried to think of a way to give us something to look forward to.   We settled on cookies.   Crumbl cookies to be specific.   

   The first week, the infusion was back up at the main hospital and was a super long day.   The infusion was extra long to make sure he didn't have any reactions.     It was amazing to see how things have changed since we were there last about a year and a half ago.   There is a eight story, 205,000 square foot expansion began in 2019, and will likely be completed next year.   It will increase their beds from 100 to almost 150.  (See picture below)    It will have a floor for Women's cancers, but will also include additional services for blood and marrow patients.   He shifted wrong in the uncomfortable chair and has been suffering with a pinched sciatic nerve ever since, so sadly, we were too tired that week to get cookies.   

     Last week we were grateful to be back closer to home.   It's been strange having chemo on a Tuesday, and has been an adjustment since it's been on Wednesday for years.   A simple change makes for an extra long week.   His infusion was shorter and he didn't have any reactions.   His sciatic is still bothering him and the chairs still suck.   However we looked forward to the Midnight Mint and Key Lime Pie cookies at the end of chemo, and they were delicious.   

     Tuesday's are a totally different mix of people, patients and nurses.   Some of the nurses we haven't seen in a while, so it's good to see them again.   But as for the patients,  the super grumpy old people next to us the first week, and the the lady screaming this week as they tried to access her sure make it exciting... interesting...weird?   Not quite sure what words to describe that.   The weather outside was rainy and there was strange rumblings in the building.  Not sure what that was all about.   However this week was Chocolate Cookies and Cream.   Delicious!

    Next week starts his off week from Pomalyst.   So far changing to Pomalyst has had less and different side effects than Revlimid.   It's been a nice change, but having a week off will also be a welcome break.       What cookies do you think we'll have next week after infusion?   Even if the weekly cookie isn't our favorite, you can never go wrong with their classic chocolate chip.  

Heart, Brains or Courage

     This quote popped up on my calendar earlier this week and was a fun reminder of years ago in elementary school.   In 5th and 6th grade I attended a special class with children from all over the county.  I remember and think often of the good friendships that were made in those year.   It was where I first met my best friend Leah.    One year we put on a presentation of the Wizard of Oz.   I shared the roll of the tin man with my friend David.   My best friend Leah played the wicked witch.   Oh... "what a world, what a world" it was!   It was fun being reminded of the simpler time of childhood and the friendships that were made.   Our lives have changed so much since then, as we've all faced different challenges.  

          However, back to the current time... it sure has been a crazy couple weeks.   The test results to identify the masses in his lower abdomen took longer than we anticipated and when they showed up in his "My Chart" we were a bit overwhelmed with what they said.   There were a lot of terms that we weren't familiar with.   Here are a few of them:  

• 
  Special (Congo Red)
• eccentricity of the nuclei
• moderately pleomorphic nuclei
• plasmacytoid morphology
• Immunohistochemical
• polymorphous lymphocytes
• plasmablastic morphology

     We learned that Congo Red is a special stain that they use to test of Amyloid.   We felt fairly confident that the test results were indicating that the masses weren't Amyloidoma's.   We also couldn't see anything that would indicate that they were any kind of secondary cancer, so that was comforting as well.  Other than that we had to wait to know what his team would say. 

     We met last week with Mary.   She confirmed what we had deduced and said that they were mostly made up of plasma cells and the masses were related to his myeloma.  (No second cancer...an obvious win).   We went back and forth about if they were old or new, but there's really no way to know.    His blood markers were showing progress that DRd was working so we said we wanted to do at least one more cycle and then re-evaluate.  We would increase his Revlimid from 10 mg for 21 days to 15 mg for the same time.   

    So this week we went for his Dara infusion, which for some reason took forever!   We always have to wait for several labs to come back, and then for pharmacy to mix up the formula for Dara.   But things were extra slow for some reason.   This was cycle 45 of Dara, combined with the 5 cycles of CyBorD made it his 50th cycle chemo.   Monday also will be 4 years since he was diagnosed.   Not sure what you are supposed to do for a "cancerversary" celebrate that you are still alive, mourn the day that cancer came into your life?  Laugh, cry?   All of the above?   What a crazy four years.  We knew at the beginning that there was a possibility that we might not even reach this point, so we are very grateful that Chris is still fighting hard and for the blessing of being able to be together 24/7 without being stuck in the hospital.   

      Dr Sborov called the next morning.   He had been discussing Chris's case and PET scan/Biopsy results with his colleagues.  The plasmablastic features indicate that the myeloma is more aggressive and indicates that they are likely new.   The lack of CD-38 on the cells is a sign that we should move to something different.   Dara works because CD38 is highly expressed on myeloma cells.  

      He suggested a few other ideas, but his suggestion is to change to is EPD -  Elotuzumab Pomalidomide Dexamethasone.  Elotuzumab (Empliciti) is an infusion that targets CS1 or Slam F7 (as opposed to CD38).   It is given weekly for the first few cycles and then similar to Darzalex can be tapered down.    Pomalidomide (Pomalayst) is the next generation of Revlimid.   It is up to 10 times stronger and so can be taken in smaller doses (they range from 4mg to 1mg), and potentially have less side effects.  It also follows the similar dosing of 21 days on, 7 days off.   Dex (the steroid) is pretty much a standard in any cancer treatment 

     

     They had previously talked about changing to DPD (Dara, Pom, Dex) and we had been resistant.  For whatever reason it didn't seem right.    We didn't want to give up on a medication that was working, but Dr Sborov said that we could come back to DRD in the future.  

     So, cycle 45 has become the shortest yet.   The day after Chris had Dara and took the first Revlimid of the cycle, Dr Sborov said to stop.    He wants Chris to feel as strong and good as possible for starting EPD.    It's always stressful and a bit scary to give up the familiar to start something new, we are so grateful for the peace and reassurance that we both feel that this is the right move.    They are still working out the details and getting insurance approval, but he wants to start as soon as possible.   

     So as we turn the page of this past chapter and start the next, are again reminded of how lucky we are to be loved.    We have been blessed by:  a cousin who filled our fridge with lots of easy to heat meals, a "wicked witch" who got us hooked back on Crumbl cookies, an awesome friend who supplies our SWIG cravings at expert timing, a friend in Italy that will take time to chat with Chris at 4AM, nephews and a niece who will play games and bring fun visits, an aunt who happened to be in the right place at the right time to give amazing hugs.   As well as friends who have shown up to hang out on the lawn or back yard for fun evening of chatting.   A new boss who immediately says "How can I help?" even though he is juggling  about a million things already.   

     And I would be amiss to not mention, how grateful I am to be loved by my amazing sweetheart.   Someone recently commented that it's amazing how much we smile and laugh, even though so much is going on around us.   Being so in love really does bring much happiness into our lives.   

     With one step in front of the other.   Here we go, off on a new adventure.