Expiration Dates

       It's hard to believe that it's been more than two and a half years since I started this blog and that we are a month into year three of battling myeloma   It feels like an entire lifetime and just a short moment all at the same time.  The blog started as a way to keep family and friends up to date on a very difficult stay in the ICU and then ended up being so much more.   I've often referred back to it when trying to recall a time frame or event.  It's helped me to have clarity and to realize just how far we've come.

      The week after Thanksviging, we start cycle 22 of DRd (Approx Cycle 27 of chemo overall).   They recently ran labs to check all of his myeloma markers, the chemo is working and his myeloma is still in sCR (Stringent Complete Response).  We are grateful this year that his chemo has lined up that his off weeks will be on Thanksgiving and Christmas, so he can be feeling his best.    We are also so very grateful that it is working and for the time we have together.

      Earlier this fall during a session of general conference the choir sang the song "A Child's Prayer".   Tears were streaming down my face as I recalled that life changing day when we found out he likely had multiple myeloma.  I would catch him waving his hand, as if to music, and thought Queen was likely running through his head, instead I was humbled with his response.   (Close Around Me).   Simply hearing this song, as we also did during the primary program in church a couple weeks before brings up so many emotions.   We have very often felt heaven close around us and surrounded in love. 

    Earlier this year I was cleaning out my fridge.  As I pulled food out that expired before Chris's myeloma diagnosis, I realized that it had been more than two years since I had last done so.  Don't be alarmed...I've thrown away bad food and done simple maintenance cleaning but a deep clean was long over due.   However it was another thing on a long list of things needing attention.   I felt like a failure.   To make things more complicated... some food had an expiration date but with no year.   For most people when cleaning out your fridge a year in the expiration date usually isn't needed but life had been so much a blur that  I couldn't recall if I'd bought it recently and likely still good.   Plus even expiration dates aren't clearly defined and are often "Best By" "Sell By" "Use or Freeze by" "Fresh Until".   

      With expiration dates of food on my mind,  it turned my thoughts to the 3-5 years survival estimate that we were given at diagnosis.   It's something I ponder quite frequently and depending on the day, sometimes regret asking.    Are we more than half way through this battle?   Or are we still in the early years.   Will he beat the odds and outlive the statistics or will things suddenly change or a simple infection be too hard for his body to fight off.      While it's true that no one knows when they are going to die, it's so very different from being told that about an incurable cancer.   Most people rarely think about the possibility that they could be in a fatal car accident when they get in a car.   Or worry about being struck and killed by lighting.   People in Utah occasionally think about the fact that there could be a "Big One" one day, but it's not something that dictates many of their day to day choices.   We are faced daily with reminders and decisions that remind us just how fragile life is.

     This fall we've been facing more than normal the financial implications of cancer.   We are grateful that Chris has had a job that has allowed him to work from home.   However changes at his work have cut back his hours earlier and more than we were prepared for.  We aren't quite sure what, if anything will be available when they ramp back up in the spring.   As well insurance renewal season with my work was worse than we expected.   Like everyone, we've watched our premiums increase  over the years.   This coming year our monthly premium dropped by $3.   However, our out of pocket costs increased by about half.   His chemo on January 2nd will quickly fill that.    I miss the days where we didn't like the idea of a FSA card because we weren't sure what our expenses would be.  Now we wish that they would update the FSA amount to actually be able to cover the expenses we know we will incur.   Compared to others our insurance has been pretty decent to work with.   We often have to battle with some providers (IHC being the WORST) to get things covered, but thankfully have not had much push back from insurance on the major things like chemo. 

    The struggle to find the balance between all the things we need to do and the things we want to do is such a difficult balance.   Work and medical stuff takes a major chunk, sleep another.   However we are always striving to to carve out more time for the things that make life worth living...even if this means that often our house is piled with laundry or dirty dishes.   We have an amazing teenage neighbor who helps us with the kitchen, for which we both are so grateful. 

    This past week after a long week at work I choose snuggling on the couch with Chris watching The Mandalorian rather than any number of tasks around our house.   It was a fantastic way to end the week.


 





   

   
   
   

Walking the Path

     Just over two years ago I started this blog as a way to update family and friends about our nearly month long adventure in the ICU.   Little did we know it would not be our last and that the journey we were on was about to get even rockier.  Life has changed, and I feel like this blog as as well.  It's primary purpose is still to keep everyone updated, but I see it now as also a way to give others a small peak into living a life with cancer.   My perspective as caregiver is different from Chris's as a patient, and no two journey's are alike but it's a path filled with so many emotions and challenges.   I sincerely hope that others can be spared from walking this path.  However I hope that  perhaps by reading our journey others can gain understanding and compassion for those in similar difficult situations.   Due to changes in treatment, the typical image of a bald and clearly ailing person is not always the face of chemo.  Many people "look fine" but are fighting a tough battle.  I feel it is that way in life.  So many people that we meet each day are likely fighting enormous battles beneath the surface. 

     As for an update.   Next week he starts cycle 19 of DRd (likely 24-25 of chemo counting his initial 5-6 cycles of CyBorD).   They recently ran his markers, something they currently do about every three months.   Even though I still don't understand what all of them mean in terms of a how the  body works, when the results pop into his online portal I know what to look for.    There is always a bit of dread when an e-mail comes in saying there are test results available.   Worry like you can't imagine that bad news is lurking at a mouse click.   DRd has been relatively tolerable, and we hope that it will continue to work for a long time.   But I think he's bypassed the average of how long it typically works, so there's always a fear that we'll get a sign that it's time to move to something different.   However, not this time!  His Kappa and Lambda Light chain numbers are within normal ranges, including the ratio.   There are no Bence-Jones protein's detectable and no Monoclonal proteins (abnormal proteins) in his blood.   His immunoglobulins are also in similar ranges as when they tested earlier this year.    In other words, No News is Good News...the chemo is working and his myeloma is in "complete response".   We met with Dr Sborov and the plan is just to keep going.

     We also met with Dr Sucher, the doctor watching over his brain tumor.   At our last visit she had wanted to start him on several different medications, and when Chris wasn't able to tolerate all of them we were a bit nervous with what this batch of tests would show.   In her words, when the test results came back at least it wasn't "What the $#$%!" (Her words exactly) .    There are still things to work on, but we are hopefully headed in the right direction.


     In June we met with a supportive oncology doctor in hopes of getting some relief from some of the side effects of treatment.   One of the biggest side effects has been neuropathy.   We were hoping they would have a different suggestion than just more meds, and expressed that desire multiple times.  As the appointment progressed it was apparent they weren't really listening and even felt like they forgot that he had cancer.   They suggested an increase in his gabapentin dose (a nerve pain med) but I pushed to make sure that it was at least higher dosage pills and not more pills.    Boy, they clearly didn't listen.    This photo is what they prescribed... for ONE month!  We decided we should try and see what we could do on our own to attack it head on.   I found a cream online called Penetrex and we decided to give it a try.   His feet are still numb, but regularly applying it has helped relieved some of the pain.   Before if I even barely touched his feet, pain instantly showed on his face.   I've mixed together my own cream with a few different creams and now touching his feet instead elicits calm.    As well, instead of all of the pills they suggested, he's been able to stop taking that medication completely. 

     Another drawback of cancer, and I feel myeloma especially, is that treatment leaves you with a weakened immune system.   It makes you susceptible to infections which your body would normally resist, such as the one in his leg earlier this year.    His body is very slow to heal and the nasty wound it left is still healing. The damage to his kidney's and side effects from his medications also make it so that we are constantly battling edema (swelling) in his legs making them more susceptible to infections.     This summer he has been battling boils.  Chris describes them like a pine cone beneath your skin.   The largest one, about the size of my hand, took weeks to resolve.   All too soon it was replaced with another one.   Sometimes it seems like just as we are making progress with one thing, another emerges.   I wish there was more I could do to ease the pain.

    Last summer just as we were excited to have chemo go from weekly to bi-weekly Chris ended up in and out of the hospital with low calcium from Zometa (the bone strengthener) and we were at the hospital 3-4 times a week for infusions.   Luckily this summer was better and I was able to use a few precious days of vacation for some "me" and "us" time.   I was able to join my mom and aunts for "WOW" (Women Only Weekend) in early August and had a peaceful experience kayaking at Sunset.   It was beautiful and a memorable weekend filled with delicious food, sleeping in and good company. 

     As well as me being able to make some happy memories, last week we did something we haven't done in years, we took a trip!   It's challenging for Chris to even leave the house, and we've talked about trying to have a "get away" for a long time.   I suggested that for his birthday we should really try to go somewhere, and for him to think of where he would want to go.   I was a bit surprised when he said let's do it!  He wanted to try and go visit Archie.   Archie is a fellow Chief's fan we met when we lived in St. George and Archie ran the Outback there.   Six years ago we made a detour to Laughlin, NV on our way to San Diego.   Later that summer he was diagnosed with his brain tumor.  Archie now runs one of the Outbacks on the strip.    I spent time finding a hotel that I felt would be a good fit and packed things up.  Before we knew it we were on our way.   We hadn't thought to check the weather reports and an extreme heat warning with almost 110 degree weather greeted us in Vegas.    However, being able to see Archie was a great boost to Chris's spirits.   We had a fantastic time.

     It's so hard not to wish longingly for our life before cancer.   Seeing Archie and catching up with a good friend, gave a momentary flash back to a much simpler life.   A life when things were... easier... and more carefree.    I tried to find a quote that could put into words the "before" and "after" feeling and came across this one.   For us, in this life, we know that it will take a miracle to ever have a "life after cancer".   Which makes the challenge all that more difficult.   We are trying to find the beauty in "life with cancer".   The thing that helps the most are the friends and family who in their own ways let us know they are thinking of us and do things  to bring us joy.   There have been so many moments when we were feeling down and were lifted up by a text, a card, a Facebook post, a visit or a phone call.   Your timing always seems to be perfect.   Thank-you!





   

Day By Day

    I haven't blogged in several months since there hasn't been much to report.  No news in this case has been good news.   We make frequent trips to the hospital, spend a lot of time working or doing other .   I've struggled with knowing what to say, without sounding too negative.   Compared to two years ago, things are better, but most days I wish I could just stay in bed and snuggle with my sweetheart.

     As far as myeloma goes, last week he started his 15th cycle of DRd.   At that time they checked his myeloma markers (with various tests...but luckily no bone marrow biopsy) and he is still in SCR (Stringent Complete Response).    DRd is doing it's job.   We are so grateful that it's working and pray that it will continue to work.   The longer this current treatment works, the more advancements are being made in myeloma and the better his chance of surviving the odds. 

      However the daily grind of continual chemo is challenging.   He tries very hard to be optimistic and stay positive but I know that he's continually in pain, always tired, struggling to think through the brain fog and battling a huge mountain side effects.  The past few cycles, his one week off from the daily med hasn't been enough to really recover.    We've struggled with deciding if we should just deal with it or see if something can be done.   It's a hard decision because there is no way to know if a lower dose will allow the myeloma to gain a foothold again.   This week when we met with Dr Sborov we talked about some of the struggles.   Rather than ask for a lower dose, Chris asked if instead he could take the Revlimid for only two weeks of the four week cycles instead of three.   Dr Sborov said OK!  Not only that, but we can try the change with this cycle and not wait until next cycle.    Instead of a week and a half more, we now have only a few more days! 

      As well the "d" in DRd is Dexamethasone, a steroid.   Steroids are one common in many cancer treatments and come with many challenging side effects.    He takes it the day of his Darzalex (the big "D") and then again the day after.    It wacks out his sleep cycle and he gets little sleep for about three days, and then crashes hard on the weekend.   The numerous other side effects can make him irritable.    He tries extremely hard not to "hulk out" but is always really glad when he can return to normal.    As the Darzalex went from weekly to bi-weekly and now only once per cycle, the Dex has followed suit.   Surprisingly they suggested that starting next cycle Chris should cut his dose in half.      Not something we had considered asking, but a very nice surprise.   With those two changes, suddenly the next few weeks look easier, let's hope it helps as much as we think it can!

     In November Chris started treatment for anemia, low red blood cells which makes it hard for the body to transport oxygen where it needs and can cause fatigue.   The dose of iron that they started with wasn't enough and a few months ago they increased his dose from a shot to 2 hour infusions every two weeks.   The iron infusions have brought his numbers up to normal range, but haven't really helped his fatigue.   With his numbers now in normal range they are going to stop iron for now and test again in two months and see how things look.

     In my last blog I mentioned that Chris was battling an infection in his leg.    Here it is months later and it's still an issue.   The infection has been gone for a while, but because we are constantly battling edema (fluid retention) his legs have often been leaking, keeping things from healing.    It's been a struggle to find the balance between compression, to help with the fluid versus causing pain by squeezing a wound that is painful just on it's own.    His skin is also extremely sensitive to adhesive, so trying to find a bandage that didn't cause even more wounds has been a challenge.   We've tried numerous remedies, including medical grade honey, and various ways of keeping it bandaged and finally have something that seems to be working.    It's slowly shrinking.   Hopefully next time I blog we can say that it's finally healed.

       With the myeloma behaving, we have also been trying to figure out what to do with his brain tumor.   It's taken a back burner for the past couple years, and while his MRI shows it's about the same size, it's up to no good.   The hormone levels that caused us to find it are the highest they've ever been.    His endocrinologist wanted us to add several more medications which we wisely did one at a time.   Several of the side effects were just too much.    Dizziness + Neuropathy and an increase risk of breaking a bone from myeloma is just not a good mix.   As well after years of struggling to find a good endocrinologist, the one we found is an ND (Naturopathic Doctor) who will do meds when needed but strives to heal with more natural options instead of pharmaceuticals.   She doesn't care for the chemo Chris is taking for the myeloma and the team at Huntsman struggles with how to know how her treatments could impact his cancer treatment.    We're stuck in the middle trying to figure out how the balance the two.    One of the medications she suggested when we researched into it said do not take if you had cancer, but then further researched showed it might be helpful for myeloma.   We asked Dr Sborov's team and all of the really smart people looked into it.  But decided that since it was a supplement and not an FDA regulated medication, there really wasn't much evidence to give a good answer, so they said it's up to us.

      While treatment and working takes up most of our time, recently I've been able to spend some time doing some much more enjoyable things.   At the end of April I spent a Saturday with my aunts Gail and Roxann at the Tulip Festival at Thanksgiving Point.   I had always wanted to go, and I'm so glad they invited me to come!  The weather was perfect, the flowers were stunning and the fresh air rejuvenating.   Not only did we get to spend time among the beautiful flowers, but they also scheduled the opportunity to make a glass bowl at Holdman studios.   It was fascinating and a very memorable experience.  Even though the heat from the refining fire was blazing, the skilled hands of the glassmith helped me turn a lump of molten glass into a beautiful bowl.

     As well, a few years ago my aunt Shari and I had a tradition of going to breakfast or lunch once a month (or was it a quarter).   She moved back from California this time last year and we've finally been able to start this back up.

     My birthday was a mix of everything.   I worked in the morning and then picked up Chris and we headed to the hospital for pre-chemo labs.   He wasn't feeling well, so we changed our plans for the evening and had an enjoyable evening at home.   Worried he ruined my birthday, he secretly messaged my friend Rachel and after her long day at Huntsman she picked me up and treated me to custard at Nielsen's. 

     While trying to find time and energy for enjoyable things is a challenge, it does bring much joy.   The daily struggles of living with cancer wears both of us down.   It often leaves us feeling weary, emotionally ragged and melancholy.    Each day however is a new day and for now we are so very grateful that our bicycle is on a path that is hopefully headed in the right direction.  Another aunt of mine recently asked "How are you really doing?" This question is hard to answer and I feel often comes with  "buts".   We are...

"Tired, but grateful"

  "Cautious, but optimistic"

 "Battle-weary, but alive!"   

   

 
     

   

   

The System Is Broken..

I had a phone call today from one of my doctor's, office. They were calling to tell me that my doctor, wanted me to see a different specialist than the one I was currently seeing. And after a long conversation, longer than the office worker wanted, I am sure, I said no, I will be sticking with my current doctor, and if they need a more in depth explanation than they can call me themselves. And their reply was I am sure they will. And the conversation was over... admittedly, one that lasted 11 minutes and 38 seconds, I knew the actual doctor one is going to be many more minutes than that.

But here is the kicker, at least one part that is really bothering me, anyways. One of the reasons they wanted me to move to a different specialist, was because the current one I am seeing wasn't in there system. For example, say.. my doctor is with Springfield Hospital, and the current specialist is with Shelbyville Hospital, they wanted me to move specialists to Springfield because that was their system. So I was going to have to give up a very good doctor, whom I have built a rapport with and been through a lot with, to start over, with another specialist just because it was convenient for them. Well, their system anyways.

See, even the great Homer Simpson knows that there is the Internet on computers now.  And that the whole foundation of it is to send information across SYSTEMS with relatively ease and speed! Now I am sure there are those of you that have a problem with sending "confidential" information over the internet. Honestly, if I was worried about that, I wouldn't have changed my Facebook posts to public, and nor my Blog posts. You see, what I edit, happens before it is even written.

And sadly, it is not just hospitals. Do a search in your prefferred search engine, and you will see how many systems are broken, at least in the opinion of the reader ,or the writer.. or even the artist.  You can hear it and read it daily about how the "Springfield police department" and that "Shelbyville police department" didn't help someone because it wasn't in their district or they were off duty. Okay, maybe not daily, but man, by all the posts on Facebook, you would think there is! Again, edit before they write, amirite? (or is it "Am I Right"?)

You could almost wonder if I am all about openness, why am I not saying names of doctors and assistants and hospitals (or police departments), well, because I do not want YOU the reader, to think I am getting a less than stellar treatment plan with my current doctors and assistants and hospitals, and there are even some others who think my opinion matters much to the point it might make you second guess going to a doctor with that assistant or that hospital. You see, I am protecting you, not the other way around. You are welcome.

A Moment... A Day... A Lifetime

     It's been a couple months since I blogged, there really hasn't been much to pass along.   Next week he starts his 12th cycle of DRd (because how the weeks have fallen, the 3rd already this year).   They  have slightly lowered his daily chemo dose which has been a nice change.   The lower dose is a bit easier to tolerate and doesn't make him fill quite as crummy.   However even with the lower dose the week he gets off still does make a big difference.   Cancer has changed our lives, and it's hard not to long for the life before.   When things were... easier.   When there was more time for fun and wasn't filled with doctors appointments.  When we could plan ahead more than the current moment or day.   We are grateful that this chemo is working and hope that it will for a long time.   This is likely as good as life is going to get for now, and we try to make the most of it.

      For the past month or so Chris has been battling an infection in his leg.   It's been very painful and continued to get worse.   Chris said it feels like he's been growing a horn.   His leg has been very swollen and tender.  The infection finally settled into a large bump on the front of his shin.  I've stepped up in my nursing duties and with a strong dose of antibiotics it's finally starting to mend.   It's like someone ripped the horn off and left a gaping hole that's trying to repair.  For someone who used to pass out at the sight of blood, I've come a long way.   As Mary, the APRN who works with Dr Sborov said "Healing is Gross".   I agree!  But it's also amazing.     



    One thing that's been on my mind lately is our interaction with people and how they make our lives better.   The nurses at both the main Huntsman and the Daybreak location have become like good friends/family.   They are more aware than even normal friends because they know the nitty gritty details of all that you are going through.  One of Chris's favorite nurses is finishing the end of his training and sadly was won't be around anymore.   When I asked Chris why he was his favorite, he said that it was because Jason made him feel like a person and not patient.   He would ask the medical things he needed, but also took a little bit of time to get to know him on a personal level and would even talk video games with him.   He was better than others at accessing Chris's port.   Chris deals with a lot of pain, so the fact that Jason can spare him some is a blessing.   .   At one point when there was a choice of "fun bandaids" he would always save the poop emoji ones for Chris.   Cause well, having cancer is crappy and a poop emoji bandaid represents that.   Jason often went the extra mile to make sure that Chris felt comfortable and we both appreciate it. 


      Another person who has also made a big difference in our life is our friend John.   John has sat with me in the waiting room for multiple surgeries and been with both of us through some very difficult times.   He's rescued the day many times by bringing food when both of us were too tired to do anything.   I sprained my ankle a couple weeks ago and thanks to John I was able to spend the weekend with it kicked up on the couch.   He's lived with us or very close by the past couple years and made our lives a lot easier.   He's always surprising us with treats and trying to make us laugh (although for those who know him... he has a different sense of humor).   He's starting a new job in Wyoming in a couple weeks and we are going to miss him.

    We're also lucky to have another good friend, Steve.   He is no stranger to heartache and has come into our life at a time when it was needed and it feels like we've been friends for ages.   He has a knack for showing up just when needed.   About two weeks ago when the pain is Chris's leg was unbearable, he showed up on our doorstep with headache medicine (aka Dr Pepper) and his two sons.   He provided the sacrament for Chris as well as a priesthood blessing and then he and his sons talked Star Wars which was a great distraction.   He often brings Chris lunch and his friendship has been a huge boost to Chris's morale.   We're both lucky to have him nearby and are grateful for his ability to sense when he is needed and come to help. 

      A couple weeks ago I was taken by surprise when my boss of many, many years suddenly decided to move on to move on to new adventures.   When I think of one word to describe him, it's compassionate.    He's helped me in a lot of ways, but one way for which I will always be grateful was that at a time when I needed it more than ever, he helped me better understand how to balance the priorities of a work and family life.     When Chris was diagnosed with a brain tumor, he was one of the first people I told, after which I sobbed all the way home.   So many times since then when life kept getting harder, he was there to check on me.   I'm so grateful for all the ways in which he has lifted my burdens, and he is already missed greatly.   He's been in my life for "many moments" but impacted me for a lifetime.   Because he wasn't just a co-worker, he's also a friend and in his wise words "the best part of friendship is jobs didn't determine friends".   

    The quote I started the blog with really is true.  Cancer does change the way you live your life.   It makes it harder but also more grateful for all those little things.    Hot rolls from a neighbor... a card in the mail from your mom... pictures from an aunt and uncle who paint your name on the ice in a hockey game in honor of cancer...  a text from a someone checking in you...an aunt inviting you to do something fun...

     More than 20 years ago after the sudden and unexpected loss of a best friend, I wrote the poem below.   It's words ring true today.    The "little things" aren't always physical items, they are the acts of service, words of kindness and love that we show for one another. 

     Thanks for being the "little things" that support us!