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.  

    

     

     

My Warrior

    It's been a few months since I last blogged, it's been a tough and frustrating summer.   Just as we suspected, Chris' break from Revlimid was over.  They had us go back in for labs in early July and his Lamda Light Chains and the ratio with Kappa light chains were off even more than two week's prior.    They wanted him back on right away, and didn't want to wait for the next cycle of Darzalex.   Just like in January it came with a horrible rash that made life miserable in addition to all the other side effects that we were used to from before.   They prescribed meds and creams to help, and it took the edge off, but it made it very difficult to sleep.  He has also had pain in his lower back (we believe a pulled muscle) so as well as a rash, he has been in a lot of pain and moving has been challenging.  Plus... on top of that, he's been battling a painful infection.    He has had so much to overcome, he truly is a warrior.  They ran labs again after about 9 days of Revlimid and things were headed in the right direction.  

    However with the same process repeated in August, his numbers were headed back up.   His August chemo included the normal Dara infusion as well as adding in Revlimid  for 10 days.  We know that the problem is likely his smaller dose of Revlimid and were prepared to increase things to help stamp the myeloma back down.   But when we've with members of Dr Sborov's team,  for some reason have really struggled for them to actually hear us.   Honestly a frustration that has been growing at least since last fall.   We have had multiple conversations where we feel like we are on the same page.   Then when we go back into the meeting notes they don't seem to represent what we felt we talked about.   More than ever before communication is a huge struggle, and it almost feels like we are speaking a different language.    They've gone down a path to switch to a new treatment, which we know we did discuss but we just don't feel like we are there yet.   We worry that they want to give up on his current treatment when all it likely needs is a dosage change.   Chris is willing to fight though the side effects and tolerate a different dose as we feel it can push the myeloma back into a corner.  We kept pushing and they finally agreed.     While we hoped for a higher dose for a shorter time, they said they want him on the same 10 mg dose for 21 days starting the same day as Dara.  Since we didn't start Revlimid before the cycle, his numbers are higher than they have been all summer.

      He had his first ever PET scan last week.   They said it would take several days to get the results, but they showed up in his online chart within a few hours.   There was a lot of information to try and sift through, and it made us a bit nervous when we got a call from Dr Sborov that evening.  There was good news, such as no concerning lytic lesions in his bones.   There are things to watch (such as an enlarged spleen).   His primary concern was some masses showing up in the lower abdomen.   Because getting imaging has been a struggle he doesn't know if they are new or old and wants to get a biopsy to know more.   He mentioned they could be Amyloidoma's (a very rare buildup of Amyloid protein).   Fairly early in his diagnosis they tested for Amylodosis where a protein called amlyoid forms in your tissue, and it was negative.  Amyloidoma is very rare tumorlike deposit.   Knowing what the masses is top priority.   As well, wanting to still know more about his myeloma, Dr Sborov pushed again to do a bone marrow biopsy.  Chris explained that because of his fragile airway, the less than ideal samples and the extreme pain of getting it from his femur he wants to save it for a last resort and Dr Sbrorov acknowledged that he understood.   Chris wasn't trying to be difficult, and his concerns are very valid.   He was very grateful that Chris was able to get the PET scan and I'm sure there will be another one in the future.    He did ask Chris to double his doses of Revlimid right away, to see if we can get things back in line and have a better idea of what to do for next cycle.   Being able to speak directly with Dr Sborov was also very re-assuring.   It showed that our main frustrations have been trying to communicate medical issues through a team to him is a horrible rendition of the telephone game.  

      Luckily the past few months weren't all about myeloma, we had a few highlights.   We took things easy the last part of July and enjoyed watching the Olympics.   It was so strange to see the the stands empty, something not to be forgotten.   We were able to see different events that we didn't always catch and it was the prefect diversion and gave us something both to look forward to.   Plus with the delay because of Covid, we now have less than 6 months until the winter olympics.   

      Another highlight of my summer was the chance to meet my new niece, Leah.   A precious little angel, straight from heaven.  I met her shortly after she was born and then recently spent an afternoon with her cute little family.   Her sister was born the year Chris was diagnosed, four years ago!   My time has flown.   Back then, one day while Chris was stuck in the ICU my brother and his wife invited me to get away from the hospital for a real shower, breakfast (with bacon) and some baby snuggles.   Snuggling a sweet baby, marveling at their tiny fingers, nose, toes and ears all put together so magically is a wonderful reminder of the magic of life and a loving creator.   It was a great escape from the challenges of life we were facing then.   So this summer, with the worries of myeloma on my mind it was a blessing to be able to visit my two nieces.   Leaving my worries in my car, I entered their home and snuggled and fed sweet Leah and had Tess try and teach me how to play Lego Star Wars.

    Today we spent the afternoon at the UofU getting a biopsy of one of the masses.   It's the first time in a while we've had to be back up at the main hospital and simply being there brought up a lot of memories.   Good news, I was able to be with him while they did the biopsy.     They did the biopsies under ultrasound and so we both asked lots of questions about what was showing on the screen.   (How anyone can read an ultrasound and know as much as they do is amazing to me).   It was also interesting that they waited to do the procedure until a pathologist was there with his microscope.   They explained that having him there was just to make sure that the samples they got were adequate to do the testing they needed.   Near the end as they were discussing, I caught bits and pieces of the  conversation.  There were words I heard which I was familiar with, that could mean it's not something major.   But we also overheard the pathologist say it was like nothing he had seen before.    He said it will take several days for them to run tests and give us an answer.   Probably not until next week.   Waiting, ugg!  

     

Bubbles

     As it seems, the world is on the verge of, hopefully, emerging from the pandemic, and we've been talking a lot about what this means for us.   We both were, finally, able to get vaccinated in April.  Chris didn't have any negative side effects, and I only had a sore arm for a few days.   Being able to get the vaccine gave us peace of mind and a little bit of courage to expand our bubble.   The week of my birthday I was able to see and visit with several friends and family who have I haven't seen in a long time.  It was nice, and made for a very memorable birthday.   With delicious food, sunshine and good conversation it was a bit easier to forget the pandemic and troubles of the world and just have a wonderful time.   

      However, the following week when talking with his oncologist he encouraged us to continue to be very cautious.  With a cancer of the immune system, the immune system is out of kilter and it's unknown how myeloma patients will respond to the vaccine.  There are studies being done, of which they invited Chris to participate and he agreed without hesitation.  The said they won't likely know for another year how effective it is or how long it lasts.   At chemo they drew labs to check his response.  The results came back and we were unsure how to understand them.  So we called for an explanation.  In simple terms, we learned there are two ways your body fights infection.    T-cells and B-cells.   They only have the ability to test the response of B cells.  Chris showed no anti-bodies, which means as far as the B cells, it didn't work for him.   The fact he didn't have any reactions was a bad sign.    It's possible that his "T' cells could fight it, but there's no way to know.   Ugg....  

     What does that mean?   Well for us, probably not too much.   When we were talking about things going back to normal we realized is actually not that much different than pre-Covid.   It's still important to not be around any who is or could potentially be sick (Covid or otherwise), socially distance and wash/sanitize often.   Avoiding large crowds, choosing fast food or curbside options instead of eating at a restaurant.  One blessing from the pandemic is far more places offer these convenient options.  it's important for us to be aware of the vaccination status of those who we do interact with, because those who are fully vaccinated are safer to be around. 

      On a positive note, Chris has been feeling better than he has in years.   The reduction of Revlimid and Dex from has chemo has been a blessing.   He has finally been able to shed some of the fluid that he's struggled with from the kidney damage and has lost quite a bit of weight.   We also have finally been able to solve an issue that has been stumping us since the fall.   His blood sugar levels have been really high, and we've been trying to work with his primary care doctor for a solution.   The week before we finally had an appointment with the endocrinologist we finally realized the issue.   His thyroid medication was recalled in the fall and we were told likely wouldn't be back on the market for a couple years.   He had been allergic to the other versions we had tried and since we hadn't really noticed a difference being on it, we let it slide.  Wrong move.   As part of the endocrine system it helps regular blood sugar.   His doctor confirmed that likely was the case and now that he's taking another version things are finally stabilizing.   Such a complicated mess of medications!   

     This week was chemo week.   You would think as long as we would be doing it, it would be routine but Chris still gets nervous.  One comforting thing is that the nurses there have become like family and it's always great to catch up with them.   This week he had a new nurse, who although experienced with ports was so nervous that she missed both times.   Ouch!   As well we also found that two of our favorite nurses are no longer there.   Charlotte, who was one of the first friendly faces we remember from South Jordan has moved onto a new department, and we didn't even get to say goodbye.  Keen has decided to retire, and at least we were able to snag a picture with her.   We are sure we will get to know the new nurses, but it does feel a bit bitter-sweet.

 As well, this week was myeloma labs.  It's always a worry to see them pop in.   This weeks results are concerning.    His lamda light chains are flagged as high, the first time since early 2018.   We have a meeting scheduled with Dr Sborov next week.  After which we will know for sure but we think that it's very likely that the break from so much chemo is probably over.   Sad day!   He very likely needs to add back in Revlimid and Dex to fight along side Dara.   Wish it didn't come with so many side effects, but grateful it works.

     I've often thought about how to finish this phrase.   "Cancer is..."   Often the first words that pops into my head is lonely.   However, as we face the upcoming week filled with appointments, we  also look back on the past few months and some of the people who have blessed us with kind words and love.   The cards, messages and phone calls are a great reminder that while we may be in a bubble, we are not alone.   There are more, but here's a few highlights.   

The Fenceposts

     I started writing in a daily journal when I was 13.  From time to time, I enjoy reading back through some of the 10,000+ entries.  It is always enlightening and often brings laughter and sometimes tears.  As I wrote in my journal on New Years Eve almost four months ago  (I started this blog four months ago and am just barely finishing it up... 2021 has been quick so far!)  I reflected back on what a crazy year 2020 was and and wondered how similar the journal entry may be to another year we wondered if we would survive.   Here is a line from my entry in 2017.     

     "This year feels like a lifetime and so much has happened.  Even with all we've been through we've made it and come across on the other side feeling so blessed."

     The same things can definitely be said for 2020.    Just as in 2018, things won't magically get better at the change of a calendar page.   However I'm optimistic that 2021 will be similar.  Better a little bit at a time with likely some bumps and challenges along the way.   Looking back on 2020, there were a lot of difficult things we lived through, but the best thing is that we were able to do them together.   I choose to look back on the positive things that happened and not just the challenges.   

    For us the year 2020 ended on a roller coaster.   Because of some needed dental work, Dr Sborov canceled all of his chemo (infusion and daily chemo at home) for the month.   Except for the short little break to do collection it's the first time that's happened since his started chemo in October 2017.   We looked forward to the break and to Chris feeling better.   It didn't turn out that way.   His dental appointment ended up being canceled by the dentist because of Covid and Chris spent most of the month feeling nauseous.   We figured it was likely his stomach (which we've recently named Oscar) not handling some recently added medications.   However it was the exact opposite.  Unfortunately when we filled his pill boxes for the month we made the mistake of leaving out one small pill that was supposed to be twice a day and we mistakenly only did one.   Adding it back in helped immensely, too bad we didn't figure it out until after Christmas.   

     In mid-December I received a phone call from my brother letting me know that my Grandpa Beauregard had had a stroke and things weren't looking good.   A few short hours later we found out that he had been reunited with my Grandma.   It was so quick and so sudden that at times it feels like a dream.   The reality that someone can be fine one day and gone the next is so hard to accept. Losing him hit me really hard.   Life is so very fragile, and I've often contemplated if given the choice which I would prefer?   Is it better to go suddenly without warning or in Chris's case, be diagnosed with something that makes you face the realize of your mortality on a nearly daily basis.   My grandpa was able to be able to die mostly on his desired terms and passed rather quickly and I imagine pain free.   He was 87 and lived an amazing life.   He provided so many opportunities for me and many others to make memories.   I'm so grateful I was able to grow up around the corner from my Grandparent's and for the memories made in home, a cabin and houseboats that he built.  Having him pass so closely to Christmas was a painful reminder that no matter what, Thanksgiving and Christmas will not be the same.   The home that held so many memories with so many amazing people, will soon be filled with a new family making new memories and it breaks my heart.   

      Grieving during Covid was is so different.   For lack of words, the best I can say is that it was lonely.  My family did decide to have a small funeral, but I decided it was best not to attend in person.  Chris of course was amazing and supportive, but to not gather with others together to mourn and hug was just a strange experience.  I'm grateful for the technology that allowed us to still "attend" from home, otherwise I'm sure it would have felt more distant.  The tears that were shed were not over his life that we were celebrating, but instead emotions bubbling to the surface struggling to come to terms with the fact that life can change drastically, in a moment.   Never to be the same.   

      Despite the unexpected loss, Christmas however was still good.  I enjoyed an entire week off from work in between Christmas and New Year's, something I don't think I've ever been able to do in my entire adult life.  We slept in, played video games and just had a laid back week.   The first week of the year was back to reality.... including chemo.   It was harder than we thought to start back up again.  Within a day or two of starting he developed a horrible rash and said it felt like he was on fire he was miserable.   His body did not like being back on chemo!   

     The next week we met with Dr Sborov, and he changed everything!  Even with December off, his numbers look good.   The decision was made to stop Revlimid (the daily chemo) and Dex (the dreaded steroid).   He will still continue to do Darazalex, but just like that.... things got better!   The two medications with the worst side effects have been removed.   The past few months have passed quickly and    When I get off work each day he's often been eager to go for a drive to get out of the house.   This week was chemo again, and having just Dara has already been such a nice change.   

      

    While recently watching one of my favorite shows (This is Us), Chris happened to join me for a moment and caught a perfect quote that he said was just what he needed to hear.   He made it into this graphic with the picture that came to my mind.  I'm not sure who said that you shouldn't let cancer define you, but when you are in the midst of it, sometimes you don't have much of a choice.    I think instead I would say don't let cancer consume you.  It clearly changes you, who you are and how you look at life... and death.   However ultimately it is up to you to decide if it will ruin you.   

 

      The thing about a fence is that there are two sides on which to travel.   We've been trudging through the muddy field, often knee high in difficulties for so long.   Though the field has a times been brightened by beautiful wildflowers along the way, we are happy to finally be able to hop over the rails to the other side.   So far we've been greeted by a quiet simple path which has allowed moments for reflection, love and laughter.   We hope to spend much time, hand in hand walking down this quiet road.   

      However just this week as we met with Dr Sborov, we were faced with a difficult decision, one with which we are wrestling.   He wants Chris back on Revlimid.   Ugg.   At this point there is nothing indicating that the "sleeping beast" is awakening, but Revlimid can help keep it subdued.  Staying "progression free" is important and we appreciate that he wants to give Chris as many years as possible, but it comes at a price.  So here we are, in the middle of a quiet country path,  with fog obscuring our way.   Do we go against the doctors recommendation or go back on a medication which comes with challenging side effects?   It's not an easy decision.