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!

 

Living with Cancer

     Last week was the start of cycle nine of DRd and this week we met with Dr Sborov.   Normally the two go together, but for some reason they didn't this time.   Some of what he said is something that has been on my mind for a while, but especially this month.    At the beginning of the month, a neighbor got up in church and shared about how a friend of his recently passed away after a battle with cancer.   In his last week and moments he had commented that he had "won his battle with cancer".   My first thought was.... but how can that be?   He then shared that he was about to drink the "bitter cup" and taste of death, but was not bitter.   It's gotten me thinking.  Cancer is a battle fought on many fronts, it often feels like a constant assault from all sides.   What are the different ways to "win" or "lose" in the war with cancer?    Here are a few I've come up with.

Physically:
Chris has overcome so much in the past year and a half.   We try to focus as much as we can on the positive and we have some major ones... finishing dialysis, removing his trach.    However there are daily reminders, often in the form of pain, that are a constant reminder.   Constant chemo with only a week break at the end of each cycle is a grind.    If there were an end in sight it would be something to look forward too, but having an incurable cancer easily steals away any hope.   Chris has the heart of a fighter and it's amazing to watch even the little ways that his body continues to fight each day.

Emotionally:
A year ago both of us held things together surprisingly well.    That's not to say we didn't have moments of sadness, fear or anger.   We would take moments to let the tears flow, but then we would pick up the pieces and forge ahead.    Luckily this year we have much fewer appointments to attend and a little bit more free time.    With waning physical energy to do  things, varying emotions all fight for attention.   We try to give Joy priority, but it's easily outnumbered.   Trying to focus on the happy memories and the things that we've overcome is a constant battle. 

Mentally:
There is a lot to juggle and often I feel like my brain is running on overload.    Trying to make sure he has all of his medications and takes each of them correctly is a battle.    I've been able to make some improvements, but it's a lot to manage.   Some medications change in dosages based on a blood tests, some are only taken at the start of the cycle, one he takes depending on his blood pressure, one is a shot.    At a quick count its about 28 pills per day(sometimes more, sometimes less), from about 6 different pharmacies.   I'm sure pharmacists see his list and are anxious, and worried about interactions.    Remembering appointments, continued learning and research to understand the complexities of Multiple Myeloma, planning meals and groceries, remembering to take out the garbage, do laundry, pay bills.   It's a lot to juggle.   We're constantly talking with each other about the appointments and things on the to do list.   Two brains, even a worn out one and a chemo one are better than one!   On top of that working full time, my brain often struggles to keep up with all I ask of it.   Miraculously it's been able to keep up so far, and with the busy Christmas season nearly through I'm looking forward to being able to give it a break. 

Financially:
Without insurance we couldn't be fighting this battle.   This year so far, 1.5 million dollars has been billed to our insurance!   Even with almost two months in ICU and the chemo last year, that's more than double last year.   Our portion has been much less than that, but it's also a constant battle of fighting to have things billed correctly.     With chemo likely a permanent part of our life, each year when insurance resets we'll quickly reach our deductible.   Plus the cost of co-pays and medications for the rest of the year.  We've had help from others along the way which has helped us to stay current and it's alleviated much of the financial stress, but it's hard not to worry about the financial future.  We are so grateful for both of our jobs that are understanding and willing to work with us.   Working for both of us helps life feel a bit like normal,.   Chris being able to work when he can (even at crazy hours of the night) is a huge blessing and distraction. 

Awareness:
One thing many people would remind me of was that I needed to make sure to take care of me.   It's always been difficult to find the time, but I've fought hard to be able to do so.   Last year at the time there was very little time to do that, but slowly.... little bit by little bit.... we both are trying hard to beat out cancer for this one.   One simple thing I've started to do is to take time to do my nails.   It's something simple, but it helps me feel human.    As well Sunday for me has really become a day of rest, where I take a break from as many responsibilities as I can and do what I need to recharge my batteries.    One thing that has been missing from both of our lives the past few years is fun.   There simply hasn't been a lot of time.    One recent "victory" has been the revival of one of my all time favorite video games.   A friend of mine suggested it as a birthday gift for Chris YEARS ago on the original Xbox.    Chris figured out how to play it on our current one and the escape was magical.   I typically hate and suck at racing games, but this one has so many different styles of play that it's loads of fun. 

Socially:
In many of our support groups we hear of people and their struggles to not feel isolated or alone.  A weakened immune system, of varying degrees, makes going out in public a risk.   Unless you have lived the cancer life, many friends aren't willing to accept that you often have to cancel plans and friendships simply fall away.    Having time to do fun things is also a challenge.   We are so grateful for so many different forms of communication that help us feel connected with those even far away.    Chris has some great friends both locally and online that frequently check in on him.   I also am very fortunate to have some co-workers who I see almost daily who remind me constantly that we aren't alone.  We always have enjoyed being at home, so that's a huge blessing. 

Marriage:
Cancer and other difficult medical challenges have been the demise of many marriages.   It's easy to understand why, it makes life hard.    Sometimes impossibly hard.  We've been fortunate that all that we've been through has brought us closer together.    Part of that is because we try really hard to imagine what the other is going through, it's hard for both the patient and the caregiver.   Chris however doesn't let a day go by where he doesn't thank me for all I did for him.   I'm so grateful that this is a battle that we are winning. 

Spiritually:
Facing death brings up a lot of questions about mortality and the belief in higher power.   Our faith has sustained us and given us comfort.    It's hard not to think "Why Us?" or "What lesson are we supposed to be learning?"   Some people when faced with a deadly disease refuse to talk about what to do if the physical battle is lost.   Always with a tinge of sadness we talk about what we can do to make things easier for me and what we can do now to make that difficult time easier.    It's hard for both of us to think about, but it does alleviate some anxiety.    Our belief that we are married not just for time but for eternity is a huge reason why I feel like we can talk about things because we know we will only be separated for a moment in time. 

      During our visit with Dr Sborov he told Chris that he needs to worry less and spend time living.  I don't think he understands how hard of a challenge that is.     Battling cancer is one thing, but living with cancer is another.    With many other cancer's you battle, hopefully you reach a point where you achieve remission and finish treatment and then still worry about if it will come back.   Sometimes reaching a set number of years where with each passing year the likelihood it will return decreases.  .  Sometime in the past few months Chris achieved "Complete Response".  DRd is working and his myeloma numbers are normal.    Some people battle for years to get here, so we know it's a huge milestone.   Strangely it wasn't something even mentioned at a doctors appointment, but something we came across in their notes.    In reality, nothing much has changed.   Myeloma is a strange world.   
       Along with all the ways I listed above, I'm constantly trying to think of ways that we make some happy memories.   Frequently trying to convince Chris to make plans with me to get away and do something fun.    It's hard because almost every time we've tried to make plans we've had to cancel them.   It's hard to look forward to doing something and then having to cancel because somethings happened or come up.    Recently several complications have often led to setbacks and hospital stays with time needed to recover.   But... for the next few weeks our goal is to really focus on the season.    Finding time for fun things, enjoying some special treats and making some memories.   Today after work Chris was feeling good enough that we went out for a date.    Sitting in our car, enjoying our heated seats and some yummy food we talked about the events of our day.   It was a "win" on the living front. 

      Learning to really "live" with cancer is a going to be a challenge.   Focusing on and making time for other things means pushing cancer into a corner and trying to forget about it as much as possible.  I likely won't blog again until next year, so until then have a Merry Christmas and Happy New Year... Wish us luck!

The Iron Lion

Sometimes the stars align and amazing things happen.   A few months ago Chris won a logo design from a guy named Curtis.    He explained to him a little bit of his story and together collaborated in concept.   He was able to create this amazing "Iron Lion".   This complete stranger, now friend, spent countless hours creating this design and both of us were very pleased with how it turned out.    Watching him sketch it live one night got us both super excited to see the final product.    Isn't it awesome?!?!    It's a great representation of Chris's tenacity and courage to fight.   

     Last year about this time while sitting in dialysis one day Chris got a series of texts from his family, all wearing the same shirt.   It brought tears to his eyes, and mine as well, to feel their love and support from afar and has continued to be a source of strength.   We were also able to offer them to additional family and friends.   A good friend even secretly arranged to have Dr Sborov wearing a Team Chris shirt.   We've got pictures of Team Chris shirts from coast to coast.  Throughout the year, and especially during tough times, receiving pictures of them has been a blessing for which we both are very grateful.  With endless appointments and never ending chemo, it can be easy for the cancer battle to be overwhelming but the pictures from friends and family help make the experience a bit more enjoyable and a little less lonely.   Another friend for Christmas got us a digital picture frame which we like to load the pictures in.   A daily reminder that we aren't alone.   

        A good friend of ours owns a company than can create clothing items with and we're excited to be able to combine his willingness to help and the Iron Lion logo into a fundraising effort to help with our continued medical costs. 

     While we are very fortunate to have good insurance, our out of pocket expenses are never ending.  Just staying on top of making sure Chris always has the daily medications is a never ending battle.   Battling with different companies over bills that have been processed incorrectly has been time consuming but easily saved us $1,000's this year.    As well, January brings a new year and a new deductible.    Chris has chemo scheduled for January 2nd so we'll start of the year with large bill.   

       There are plans in the works to offer shirts and hoodies, hopefully sometime early next year.   If there is a specific thing you would love to have let us know.    For now we are excited to start with hats.   They are 39Thirty brand hats, Chris favorite kind.    They come in 3 sizes.  S/M, M/L  and L/XL (See size chart below).   These hats are typically sell for about $25-60.   If you would be interested in helping us out and sporting one of these amazing hats please reach out to us and let us know.    They are embroidered and look amazing in person.   To cover the cost of the hats as well as some to put towards medical expenses, we are offering them for a minimum suggested donation of $25.  The amount you choose to donate for each hat is up to you, so make sure when you message us your order that you indicate the qty and sizes.   For example if you want to donate $100 and just want one hat, that would be great.   If you want a hat but can only afford $25, that's great.   We're happy and appreciative of any help to lessen the financial burden.     

      Comment on the Facebook post or e-mail us at Carlsson.Home@gmail.com with any questions or to place an order.  We can then work out the logistics such as payment,  pick up or shipping (for an additional amount) and sizes and qty's. 

Thank-you so much for your continued support!
      

In Every Drop

       The past two weeks have been a bit of a blur.   Part of my mind is still back in October while the reality is that it's the middle of November.  Coming home from the hospital, visiting several times to check kidney function and also starting cycle 8 of DRd have kept us pretty busy this month.  If there's one thing that will keep me grounded it's working in retail at Christmas.    We're right in the midst of preparing for the Christmas season (with 9 pallets in the past 4 days).  There's much more coming next week, in addition to Black Friday.   

      Good news is that his kidney's are doing better.    One of their main functions is to regulate fluid in the body.   When they were failing last year they limited any liquid intake to 1.5 liters per day to allow them to have a lighter load and hopefully recover.   This time they were encouraging him to drink as much water as possible and also had him on a continuous IV drip to help re-hydrate them. It was quite the switch.     Because his kidney's were on strike they weren't processing the fluid and from when he entered the hospital to a few days after he was released he gained about 25 lbs (about 11) liters of fluid.  Having water tucked in every nook and cranny was a painful experience.   At one point, and for almost a week, his feet were swollen to almost round in shape, red and very painful to even the slightest touch.    Having to walk on them was torture.   The fluid pooled mostly in his legs which made walking difficult and put stress on his hips and knee's.   His kidney's were also very painful and leaning back at all was excruciating.   So, he spent most of his time in the hospital trying to get comfortable in a chair.    The pain meds would make him loopy, and it was a struggle to find a balance.   We both were a bit surprised when they came around for rounds one day and said they thought he could go home.   His creatinine and potassium were trending in the right direction and they felt he was out of the woods.     Knowing he would get better rest and be more comfortable at home we didn't fight to stay longer.   

      Meeting with his myeloma team at the start of his cycle on Wednesday they wanted to start to try and get the fluid off and put him on a diuretic.   His hemoglobin was also very low so they  scheduled a blood transfusion for the next day.   He started the diuretic on Friday and Monday when we went for labs he was down 30+ lbs, about the equivalent of 14 liters (or 7 large bottles of soda).   They were stunned and a bit concerned at such a drastic change and told him to cut back on the dose and scheduled more labs to follow up.   His kidney #'s at that lab were doing well, so hopefully taking it easier this week and continuing to drink lots of water this week will help his kidney's continue to be happy. 

        This week while the barrage of boxes was descending upon our store, one of my bosses, came by to help us.   He asked how Chris was doing and then shared with me a story and a quote that reminded him of Chris.    I was touched that he could recognize in Chris a trait that I also see.   There were a few variations of the quote, but this one I felt was the best in our situation.    This recent hospital stay was very physically challenging, but also for some reason very difficult emotionally as well.   Dr Sborov even picked up on it when we visited with him, but didn't really offer any encouraging words which left us both a bit down.   Now as he's feeling better, little bit by little bit, he's also recovering back to his cheerful self.   The smile on his face when I get home from work and the offer to do anything he can to help ease my aches and pains is the Chris that I  know and love.   I'm so grateful to have that back. 

     
       

Tomorrow

     Continuous fluids and several medications and the numbers show that Chris's kidney's are doing better.   His creatinine is still elevated, but coming down.  It was 4.5 on Halloween, down to 2.9 now and 1.25 is normal, however since last year Chris is usually around 1.4.  His potassium is on the high end of normal.   The doctor's feel like it was safe for him to return home.  He's still overloaded with fluids and his legs and feet are red and painful to the touch from stretching to accommodate the fluid.  Added to the neuropathy from chemo that he already had, it's very difficult and painful to walk.   We haven't seen Dr Sborov since Halloween, and he checked in on us today.   He recognizes this has been a huge setback, one that's going to take quite some time to recover from.   The doctors in charge of his care while in the hospital think this was likely just a complication from the meds his kidney doctor put him on.   In some ways it's comforting that it doesn't appear to be a sign that the myeloma is outsmarting the chemo, but it's also heart breaking to know that the specialist who was supposed to help us safely reduce the swelling did exactly the opposite.   This very likely could have been avoided.  
  
      We were blessed this trip with some amazing nurses and aides.    A few we even had for a couple days in a row.   I can only imagine how difficult a nurses job is and am so grateful for all that they do to keep Chris safe, comfortable and cared for when he has to be in the hospital.   One moment when out walking the halls an alarm sounded in a room and I watched a half a dozen nurses and aides run into a room to help.   At one point, Chris picked up on the fact that one of his nurses seemed a bit overwhelmed and spent the rest of the day trying to cheer her up.   She had casually mentioned that she never heard her name, and so we both made an effort to sincerely thank her, including her name (Aimee) when we had a chance.   Working with Aimee was an aide named Luke.   Male nurses and aides aren't very common but are always a nice addition to the care team.   Luke was very knowledgeable and helpful and always put Chris at ease.   Another great nurse was named Maureen.   When we noticed that Chris's feet were red, hot, sensitive and very swollen and asked her to check on them you could immediately tell how concerned she was.   When she later accidentally stepped on his foot while trying to get IV pole she was so remorseful.   When the pain subsided Chris did his best to make her laugh.   I love this quote because I feel it goes both ways.   Both from nurse to patient and patient to nurse.   Chris is always so appreciative of those who care for him.  

      This time we had mixed feelings about coming home.   Walking is so difficult and painful that being home means it would just be the two of us ensuring his safety.   However, it comes with the added benefit of his recliner.   He struggled the entire time to be comfortable and spent most of his time in a chair.   He tried the bed on a few occasions but the pain when leaned back from his kidney's made it intolerable.  Coming back to his recliner where we know he's going to be able to rest comfortably is a huge blessing.   (Thank-you again Grandpa).   As well, being able to return to a shower where he not only feels safe but comfortable and a bit pampered as well is another huge plus.   (Thank-you Fred).  

       While returning to the comforts of home is a treat, tonight we also had another treat.   A sweet friend and employee from my time in St George had hot chocolate chip cookies delivered.   They were amazing!  Baking is a hobby I haven't had much time for lately, and we've both missed cookies fresh out of the oven.   These one were delicious!    Thank-you so much Jamie!  

      In our a support group I remember reading another myeloma caregiver saying that they don't like cancer being compared to a battle and that when a person dies from cancer they have lost the battle.   While I can see why they think this way, I think the analogy does fit very well.   I however don't see cancer as a battle, I see it as a war, one with many, many battles.   Sometimes the battle involves conquering the effects of chemo, sometimes it's choosing to get up and face another day despite the pain.   Sometimes it's a battle to stay positive and other days its a allowing feelings of sadness, fear and despair to escape as tears.   With all of his challenges, Chris is fighting a battle with multiple fronts.   It takes a lot of energy and planning to stay ahead of the enemy.   For tonight we wish to call a truce and hopefully have a small moment to recover.   Wednesday begins the start of cycle #8 of DRd.   With DRd and Dr Sborov as allies we are still winning and hope to keep it that way for quite some time to come.  

Re-Balancing

    When we look back on our different hospital stays we usually refer to them by the condition that landed us there.   Since we already have a "kidney failure" stay this one is likely to be remembered by our visitors.   Nope not people but box elder bugs.   Not the occasionally one or two, but countless ones hanging out in the bathroom and squished on the floor.   Trying to sleep in a hospital with all the beeping and interruptions is always a challenge, but having the heebie-jeebies of bugs climbing all over you is one we hope not to repeat again.     

     Anyways, yesterday he started the day with an ultrasound of his kidney's and a visit from the BMT (Blood and Marrow Transplant) team who is in charge while he is here.  Since he is here for kidney failure we knew we would also be seeing the kidney team and were surprised that they didn't show up until late in the afternoon. 

      Because his kidneys are struggling his electrolyte levels are out of balance (potassium, calcium, sodium, etc.).    On the basic blood test pretty much everything is flagged.   The main one they are concerned about is his potassium.   The high levels can cause problems with his heart so before we even got to our room they did an EKG.   There was a "small" afib so they have him on a heart monitor (they call it telemetry).  He's also on a continuous pulse and oxygen monitor.   It went off constantly all night and day yesterday making it a pretty sleepless night.    After swapping out monitors and sensors multiple times they finally figured out that a forehead monitor would give better results so he's rocking a nice headband to keep it in place. 

       They have done a lot of different things to try and bring his potassium levels back into balance including, strangely, a high dose breathing treatment of albuterol.   His levels yesterday were up and down, but today as far as we heard, they are trending down. 

      One strange thing compared to last October is that instead of crazy high blood pressure, his blood pressure is really low.   The BP monitors have a hard time recognizing it, so they are checking it manually.   The systolic number has been in the 80's or 90's, but today it was in the low 100's.  A sign that things are headed in the right direction.   Kidneys are very particular and don't like either high or low blood pressure.  Having normal makes them happier, and we much prefer happy kidney's. 

      The updates from the two different teams today is that they are about 90% certain that his kidney's are struggling because they are dried out (I think from the medications to try and pull off extra fluid).   They are giving his kidney's some TLC and have him on continuous fluids to re-hydrate while also trying to not make the fluid issues worse.   His legs and feet are very swollen and painful so it's a tough balance which is going to keep us here for at least several more days.   Healing is just going to take time and we just have to be patient.   There probably won't be much to update, so in this case no news is good news. 

       Today for the first time in any of our stays we had a visit from a chaplain.   It felt a bit like being on a show called "The Story Trek" as we shared with him some of our story.   What a crazy story it has been!   Being able to share with him some of the miracles we've experienced, and the love that's been shared was a great way to pass the morning.   Joy and peace are there if you make sure to look for them.   Perhaps instead of remembering this visit at the box elder bug stay, we can try and remember our visit with a chaplain.