How a plate of warm cookies saved my life. (How I remember it.) Part 1

I started working at this movie theater in Bountiful Utah the day before Star Wars: The Phantom Menace came out. I was hired as one of the Assistant Managers and mainly run the floor. I am a pretty big guy, and large crowds really didn’t scare me. I met most of the employees, except one of the other Assistant Managers, her name: Michelle.

A couple of exhausting days later, I remember a conversation in the “Box” to buy tickets. Literally, a box. See, kids, back then, they had to buy them in person, one or two people could buy at a time. None of this log into a website pre-purchase, then walk-in magic that we have now. Anyways! I had met Michelle at this time, but for some reason ‘dating at work’ was the topic we were discussing, and I remember distinctly saying, “Well, you don’t have to worry about me, I think it is a bad idea.” Hrmmph.

Fast forward a little bit, and I had bought a brand new 2000 Chevy Malibu, and was talking about it, and for some reason I said she could borrow it anytime, not really thinking she would. Her car was not a brand-new car, and not the most reliable thing. I was thinking that she might need to borrow it for a bank run or something like while at work.  

She mentioned before that her and her girl friend was going to see Phantom of the Opera. It was a high-class affair, and she was going to get all dressed up and make a night out of it.  And then she asked to borrow my car for that evening. It happened that I was working the same time she would be there, so it all worked out for her.  My outside voice said Yes! My inside voice said, “OH NO! WHAT HAVE YOU DONE. NOW YOU ARE GOING TO WORRY ABOUT IT THE WHOLE TIME! AAAAAGH…” or something like that.

Now, remind you, we were not dating yet. Hadn’t even thought about it at this point, and now she is taking my new car. I remember it was a busy night, which I was probably glad for so I wouldn’t worry about it. She came in grabbed the keys and left before I could change my mind. But, I did get to see her all dressed up. Wow. No no! She is a co-worker!

My shift ended and I locked up. She parked the car in front of the Ticket Box, to keep it safe. I remember I was exhausted, stressed and just wanted to get home. I jumped in the car and went to start it and something hit me. What was that wonderful smell! I look over and there was a plate of fresh warm chocolate chip cookies.

My drive home was probably the best drive home ever. I don’t remember anything else, but thinking:

 

She’s a keeper.

It's all about Time

     I think this is going to go down in my record book as a year about time.   Where days, weeks and months seemed to pass both slowly and quickly at the same time.   Where each morning you wake up and its a struggle to try and figure out what day of the week it is.   It seems as if my birthday was just yesterday and months ago all at the same time.  What an interesting month it has been and how things have changed.   Watching the news feels like watching the twilight zone and going out in the world feels much the same way. 

      In between chemo and our appointment with Dr Sborov the following week, we went for MRI's.   Being able to get imaging (PET, MRI's or a CT) has been challenging since Chris's diagnosis and something we've always been trying to do.   It's an important part of watching his myeloma.   We've settled for X-Rays looking for lesions, and for Ultrasounds to check on the plasmacytoma on his sternum.   But for the first time we were able to get an MRI.   It wasn't the best experience and the people at the facility were downright rude and very unprofessional.   MRI's are loud and uncomfortable.   However, Chris was able to get about half way through before it was just too much.   He left discouraged and I left worried.   More than previous scans, the radiologist kept coming over and checking out the images while the tech had them up on the computer.   I was worried that they were seeing things we weren't aware of.   I tried not to think of it too much, and I made sure not to tell Chris, as he would definitely have worried. 

      The next week we met with Dr Sborov.   Because of  COVID it was our first ever virtual visit.  I hope that they continue to be an option in the future.   We didn't have to drive up to "the mother-ship" and fight traffic.  In some of our previous visits we would guess at how long we would wait.   In the waiting room, in the room, after talking to the nurse or PA and before we finally saw him.   This time, however, and right at our scheduled appointment time he connected in and we had a great conversation.   Instead of getting the condensed version of how things were from the nurse/PA, he asked us directly.

      He addressed the results of the MRI and was happy with the results.    They were clean!   Can we get a hooray!  While Chris wasn't able to complete all that they had ordered, he was happy with them.   The large plasmacytoma that was on his sternum, is as far as they can tell, was gone!   There were no visible bone lesions either.

      Then, he asked how Chris was tolerating chemo and, as we have done in previous visits, Chris talked about how the last four days he feels like it's just pushing his body too hard and how miserable he is.  We were both surprised when Dr Sborov said, "well let's drop them!"   Chris would have been happy cutting out just 2 days, but Dr Sborov was OK with 4.   So now instead of the original 21 days of Revlimid that we started with, he's been able to drop from 14 down  to 10!   Less than half!   It was effective immediately and has already made a huge difference.   As we start cycle 29 of DRd this week, it's a huge blessing to look forward to seeing more better days on the horizon.   You may remember my last blog was titled "Hoping and Wishing" and included this quote.  The "better days" are plentiful for us this month.

    Along with the change to Chris's chemo, I have also had a major life changing event.   Even bigger than just dropping 4 days of chemo.   Actually...MUCH, MUCH BIGGER!   After a short transition time next week, I will no longer be a store manager at Seagull.   I've spent 20+ years working in retail at Seagull and it's  been a huge part of my life.   Making the decision to give up my store and jump into something new wasn't a decision to be made lightly.   If feels surreal and it still feels a bit like a dream to wake up from, but it's true... I started a new job this week! 



     As things developed, and the decision to give up my store was placed before me, I was at first very overwhelmed.     However that feeling was quickly overshadowed by an even bigger feeling of peace.   I felt strongly that God was the one putting things in motion.  This was the right decision.   I will miss seeing my friends, co-workers and the customers on a daily basis.   However, interacting with the public and being worried about bringing any kind of sickness (especially Covid) home to Chris has really been a huge stressful weight on my shoulders.   We both feel a profound peace in each other's company.


    There are many positive changes with this transition.   The major one being that for a majority of my time, I will be working from home.   Being able to be close to home has been a blessing, but there have been times where he needed me and I was unable to come home.  And there were often times when I knew he was having a bad day and just the peace of mind of having me nearby would have given him comfort but he worried about pulling me away from work.   For example just last week he woke up with a debilitating headache.   He needed my help getting from the bedroom to the office.   I left for work, worried about if his headache would get better and he would feel more comfortable getting around.    It's hard to even explain how being able to work at home provides such a profound blessing of peace.

    Another great blessing we've already felt in just the few short days is the ability to be more flexible with my schedule.   Rather than going back and forth between home, the hospital and my work... my work can also, to a large extent, travel with me.   Today was chemo and unfortunately hospital policy still won't allow me to be there with him.   I got up early and was able to make up the hours I would miss while driving him back and forth.   As well, in the future, I can bring my laptop and work while I'm there. 

     What is this new job?  I haven't left the company that I love and have dedicated over half my life to... I've just moved to working in the background.   There's still much to discover about what my job will entail, but in general, I'll be helping with marketing for Seagull and Covenant.    I'm excited to be learning new things and hopefully putting some of my current skills to even greater use.

    So as the COVID numbers keep rising and the world outside seems to be getting crazier with each day, I'm so very grateful for the changes that life brought us this past month. 




   

Hoping & Wishing

    It's been a strange couple months since I blogged.   How is it that it feels like just a moment and an eternity at the same time?   Living during a global pandemic has brought out the best in people, and sadly also the worst.   Instead of celebrating that our efforts to socially distance have worked and the curve is flattening, it seems like many are buying into the theory that it's nothing more than a flu.  The heartbreaking stories coming from places hit hard are proof enough to me that we did the right thing.   Everyone is eager for life to get back to normal, but I worry that their impatience is going to cause heartache and tragedy.  Maybe not for them but for someone.   I'm not saying that we can live in lock down forever, but simply wanting for something to be different doesn't change reality.   If that were the case, I would have simply "wished" for our crazy cancer life to go away. 


       I often wonder what those who lived during the 1918 Spanish flu pandemic would think today if they watched the news.   Germ theory was still fairly new back them and I think how grateful I am for all the advances that we've had in medicine since then.   All of the resources being directed at this novel virus is likely paving the way for even more advances.  While at some times the information is overwhelming, I'm grateful to be living in a time when information is so readily available.   That information I believe has been power that has spared us from even greater lives lost. 


   With all the news of COVID and people being hospitalized, I know the heartache of seeing someone you love on a ventilator.   Watching him struggle to breathe, his eyes pleading with me to help.   Only to be pushed out into the waiting room in the wee hours of the morning, waiting for hours to know if he was OK.   Then several days later watching him be emergency intubated...again.    As tough as it was to watch, it was comforting to be able to see the care of an entire team of nurses and doctors as they did so.   I don't believe I ever talked to Dr Dorsey, who intubated him, but I've thought often of him in gratitude for the skills to provide such a difficult task not only once but twice.   There are so many people working so hard to keep everyone safe, and I can't imagine how difficult this has been for them.

    For us and cancer life...Cycle 28 of DRd starts this week with testing and labs today and chemo on Wednesday.   Wednesday also happens to be my birthday.   When I was doing this calendar earlier this year and realized that chemo would fall on my birthday I was a bit bummed, it isn't the ideal thing to do any day let alone for a birthday.   We've spent important days in the hospital before, so I quickly dismissed it.  However this one is a bit more than just a birthday.  When Chris was first was diagnosed, they estimated that he could have 3-5 years.   My mind quickly did the math and figured I could be a widow by the time I turned 40, this birthday.   I've never been one to stress over a birthday, but 40 suddenly was a terrifying number.    I'm so very grateful that his chemo is working and hope and pray that it continues to do so.   Chris is worried about trying to find a gift, but the time we get to spend together is the gift I love the most.   I've been home a bit more these past months and it's been humbling to see how much pain he's in, and how hard he fights to be here.   Money is tight and all traditional birthday celebrations are off the table.  Knowing this week is filled with medical appointments (including 8 MRI's), we celebrated this weekend.  Yesterday he spoiled me with his gourmet french toast and a relaxing foot rub. 

     Because of the virus, current hospital regulations won't allow visitors.  We understand the logic behind it, but it causes a lot of anxiety, sadness and stress for both the patient and the caregiver.   As I dropped him off for his last chemo, I wished for nothing more than to be exactly there, sitting beside him in the hospital at chemo.    Leading up to it he was worried.   We talked frequently about how and what we could do to make the day better.   I however knew that the nurses would take care of him and that things would be fine.   However the tables were turned that day.  As I dropped him off at the entrance, the security and precautions had changed drastically from the previous time and I felt like I was sending him into danger... alone.   Someone near him as he walked in said they thought they had Covid, and then a very memorable patient next to him near the end of infusion made for an extra anxious chemo session  (perhaps he'll blog about that one sometime).  I walked back to the car and drove away in tears, overcome with what I knew were irrational feelings.  We would only be apart for a short time, and I'd be able to pick him up later that day.   I tried to avoid thinking how impossibly hard it would be to drop him off for an inpatient stay of any kind. I also thought ahead to this week and what I could do to distract myself in the event I wouldn't be able to be with him again.   I hoped the visitor policy would change by now, but sadly it hasn't.   Since going to lunch or other things with friends or family is better avoided, I'm thinking I'll find someplace pretty and go for a walk or perhaps drive around singing some songs. 

    I am doing everything I can to be as safe as I can, but it's hard to put the safety in the hands of others.   I have avoided going out as much as possible. I wear a mask all day at work, then shower and change when I get home.   Masks can't prevent things completely, but they can significantly decrease the risks when both parties have them.  This weekend my brother asked if he could come for a porch visit.   We've been very careful about visitors, and likely will until this is over.   Cancer has caused us to self isolate to a degree even before all the current situation, and I told him about my concerns.    He, his wife and even my cute 3 year old niece came with masks on, and we hung out outside, carefully distanced from each other.   When he said "Keeping Chris safe is our first priority also" I wanted to hug him... but I couldn't. 

 As things in the state have decreased in risk level, for us they remain elevated and will be likely for quite some time very potentially into next year.   We will avoid going out as much as possible and limit those who visit, asking those that do to take extra precautions.   As much as we would love to hug those who help us, we will do our best to refrain.   We are so grateful for those who have helped us to stay safe and fed by bringing groceries.   For those who aren't in the high risk category, I encourage you to not forget those of us who are not only trying to survive a pandemic but also fighting other battles that put us at even greater risk.  Being asked to wear a mask may not be convenient and it's not a guarantee, but it does reduce the risk.   Many people you may be interacting with as you go back to shopping are themselves at risk or have someone they care about that is at risk.   It's a small act of humanity that you can gracefully give. 


   


   

The List

     We all have them...the list of events when our lives were forever changed.   Days where our vision and understanding of life was altered.  Moments that can break us, or define us.   While some of our most life altering moments are happy... such as the day we meet a lifelong friend, the day we graduate, get married, have a child ... this list is different.   It's a list of days when we are pushed nearly to a breaking point from fear, sadness, anxiety, loneliness or grief.

     The first for me was a day just after I turned sixteen.   It was the beginning of summer and I was in a good mood.  I remember bouncing up the steps and passed my dad who was sitting on the stairs talking on the phone.  Shortly after he called us into the living room a while where he let us know that one of my best friends had passed away.   Several days later, leaving the cemetery after the graveside service I heard others in extreme grief sobbing for a life lost so young.   Instead of a breaking point of grief, I was instead blessed with a strong feeling of peace and knowledge that death wasn't the end.   As a child I had always grown up with a religious belief that there was a life after, but had been spared experiencing it close hand.   My paternal grandfather had passed away years before, but at an age where it hadn't quite absorbed or understood the magnitude.   The precious gift of peace and knowledge that I gained during that experience I have carried with me ever since. 

     Another such moment occurred five years later.   This one impacted the world.  September 11th changed everything.   We had been married for just less than a year and the comfort from being safe in his arms when we were reunited that day is something I still treasure.  The change that happened within the country was profound.   Everyone was "in it together" and we were all united.  That unity and patriotism continued through the Olympics, but then over time just slowly fell away.   I wish it could have lasted for others, but I will never forget what I felt that day.

     The year 2017 provided several more moments to my list.   In May the "longest day ever" turned into the longest night, longest week and longest month.   Well... might as well include it..the longest year ever.  We were faced with so many impossibly difficult situations that year.   But we survived! Looking back it would be easy to focus on the bad, but there were so many blessing too!  I'm so grateful that my work understood the importance of family and allowed me to be there, by his side every step of the way.  Had I not been, I don't believe that he would be here today.
      One particular moment in October when he was in the ICU he was in respiratory distress.   Things were escalating quickly, alarms were beeping, multiple nurses and RT's (Respiratory Therapists) were there trying to figure out what was wrong.   Tucked in the corner out of the way, I was blessed with a moment of clarity.   After inquiring if they had deflated the cuff on his trach, they realized they hadn't and immediately did so.   He was able to breath again and the alarms quickly silenced.   Such a stressful situation, but one where we were very blessed. 

   We have been watching the events of this year with caution.   As things escalated quickly, we canceled our trip to Vegas and spent that week at home.   While not quite the relaxing "vacation" that I had been looking forward to, being able to stay at home and not venture out was a huge blessing and one that helped calm many of my worries.   We've been blessed that our home has always felt like a refuge, a little piece of heaven. 
      Because of his weak immune system we already had much of what we needed.   John helped to stock us up with some of the essentials before he left for work in Wyoming, and other friends and family helping to fill in a few of the gaps in essentials that we needed. 
      This week was the start of a new chemo cycle.   Going to the hospital for labs on Monday was different.   The tents for testing were just across the way from the  Huntsman parking but it was comforting to see that they had blocked off the infusion center entrance to only cancer patients.
       They tested his myeloma blood markers, we always are a bit nervous to click the results, this time especially so.   Having his myeloma choose to stop responding now would be horrible timing.   When they showed an upward spike we were a bit anxious.   Huntsman, like many other hospitals, has recently changed their policy to no longer allow any visitors.   Luckily Matt, his nurse (we love Matt) sent us a message and just told us that they had changed the parameters and all was still well.   In addition, as probably a mix of things (saving resources and limiting exposure) they decided for this cycle to remove the infusion portion of this chemo cycle.   Instead of the Darzalex infusion at the hospital with is accompanying steroid, he's just taking his daily chemo pill at home. 

     This week as well I returned to work.  Unlike previous times away where it felt like returning to a little bit of "normal life" this week was anything but normal.   It was great to see my employee's again, many of them to me are like family, but it has been so stressful each time to know that going to work was risky.   One very important thing has helped me survive difficult situations is to not look to far ahead.  Sometimes just living a moment, an hour, a day or a week at a time.   That is how I survived before and that's how I survived this week.
 
      When my work acknowledged that it was too risky for me to be there (by suggesting they might need me to sign a wavier) I decided it was time.   I hope that I have the time needed to be off, and that I'll have a job to return to, but for now I'm so grateful to be safe at home.

    I'm not sure what the coming days, weeks or months will be like.   No one knows how long this invisible but very real threat will alter our lives.   For now I choose to continue forward with love, hope, and gratitude.   What we are being asked to do is not impossible.   We are blessed in so many ways.   We are safe in our homes, sleeping in our own beds.  We can go outside for fresh air and sunshine.   We can access the internet and use it to stay informed, stay connected and also stay entertained.   We have clean water that we can use to shower, cook and wash our clothes (and hands).   So much has changed in the past years that if we need to do so, we can leave our house to obtain groceries and even take-out food without having to leave the safety of our car.   Medications if needed can even be mailed.  I'm grateful for all of those on the front lines.  The doctors, nurses, therapists, pharmacists, truckers, grocery store workers, factory workers and countless essential others.   I've seen their love, compassion and knowledge many times first hand, and hope to not need their skills for the time being.    I'm very grateful for the precious time I get to spend with my sweetheart and for the friends and family who reach out to us and offer their help to keep us safe.   Today the sun is shining and a beautiful refreshing spring breeze is blowing through the pink "popcorn" on my apricot tree.   Today the world is united in prayer and looking upwards for guidance and peace.   Today is new day. 

      What has this situation made you grateful for?

   

The Year So Far

    Nothing against the Chinese Zodiac, but the Year of the Iron Lion is bound to be better than the year of the rat just on name alone.   Here we are, just over 2 months into the year of the Iron Lion and already in the middle of the 3rd cycle of  chemo so far.   He's halfway through the 25th cycle of DRd.   Half way through means, no more chemo for two weeks!   During our visit with Dr Sborov in January I asked about adjusting how we change the steroid from 12 mg on infusion day and 8 mg the day after to the possibility if just taking it on one day.   Since it kept him awake most of those two nights, I hoped trying to take it all on one day would help.   Much to our surprise he instead suggested that we just cut it to 4 mg on infusion day.   What a blessing!

    At the end of January they tested his iron and found out that it was low ... again.   Last year they started with trying to boost his iron, first with a 5 minute "push" and when that wasn't successful an hour and a half infusion that they paired with his chemo for months.   This time they decided to try a different version of Iron, Iron Dextran which unfortunately took forever for it to get approved by insurance.   It should be longer lasting and only require one dose instead of many, but it also carried with it more risks of a serious and potentially lethal reaction.   In addition to spending Wednesday doing chemo during this cycle, we were at the infusion center on Monday for a long day.   Luckily all went well, he had no reactions and we are hoping it will help.

    One of the side effects from being anemic is that Chris has been quanked.   He often gets 10-12 hours of sleep at night, and still be exhausted and fall asleep during the day.   Even though I constantly tell him not to worry, he always feels guilty that I'm off working and he's home napping.   Or on my day off that he would be sleeping instead of hanging out.   To help him get the rest he needs on my days off, I often would often hang out in bed reading books or watching TV to avoid waking him up. 

   Chris's goal to "see past the myeloma" has included a focus to  make some fun memories.   In January his Kansas City Chiefs helped us with that goal with some EPIC playoff games.    In February they helped again not only with playing in the Superbowl.   Some secret elves made our house extra festive with the flags lining our sidewalk. 
Just prior to the game I said that they should win it with an easy to remember score our birthday's.   As the game wrapped up, the final score was 31-20!   We should have bet in Vegas!   Chris has been on cloud nine and it's for sure a memory to last a lifetime!

   
    This month we have a long trip to Vegas planned and we are crossing our fingers that we don't have to cancel it.   The Corona Virus is making us question if we should go.  For most people, it's not something to really even be worried about.   But Chris happens to fall in the category of those who should be worried, and, well, probably the most worried.  Myeloma is a cancer of plasma cells (a type of white blood cells).   Plasma cells help you fight infections by making antibodies that recognize and fight attack germs.   The most common cause of death for myeloma patients is infection.  Not only does he fall into the "at-risk" population, but profoundly at risk. 
 
     Ever since his diagnosis, when I go to work and interact with strangers from all over the world, it has made both of us a bit nervous.   Without my job and it's insurance, we couldn't afford the treatment that is keeping the myeloma in check.   The job that is keeping him alive is also now putting him at risk, I don't have the option to work from home.  I'm holding tight to the fact that we've been OK so far. 

     COVID-19 is just barely making it's way to Utah, and I know the chance of interacting with someone with the virus is pretty minimal, but it does cause worry for both of us.  The changes since just last week, and how quickly things are escalating make us very nervous.   It's hard to not worry us too much!  Our trip to Vegas is for some rest and relaxation, nothing really big.   It's something we both really need, especially since our last planned vacation also had to be canceled.  His doctor has gave us the OK last week (especially since we are driving and not flying), but this week it seems like things are changing so quickly.    In actuality, I will probably have less interaction with the public than I do at work each day and we will probably be safer.  We had supplies before hand that we can take with us.   Being afraid of a vacation is one thing... the bigger question.   How do we conquer that fear?   Do we cancel and self isolate?   Or do we go and try to have a good time?  What would you do?

   

Year of the Iron Lion

It has been a while since I have posted. Michelle has done great at keeping up with the technicalities of this battle. But I wanted to keep things positive, so I wasn't sure what to post about. Yes, I could post about how the Multiple Myeloma has been held at bay, which is great, but I was starting to feel like I was being defined by the cancer.

As the end of 2019 approached, I turned to Michelle one day and said, "2020 is going to be MY YEAR!   I'm feeling better than I have in ages and it's time things started going the right way for once."   We declared together that 2020 would be the year of the Iron Lion.

Why the Year of the Iron Lion? Well, my goal is for you to see past the Multiple Myeloma. See past the pain and crud, and see me again. So how do I do that? Well, I declare this MY year! (Besides, isn't it better than the Year of the Rat?) And to bring my personality, craziness, humor, passions and color to the forefront, instead of only posting about cancer. Now, I will probably still post some about it, because it will be with me forever, but did you know I am a Star Wars fanatic? How about football, did you know I am widely known for my 30+ years of being in love with a small little NFL team know as the Kansas City Chiefs?

We all know my Kansas City Chiefs are in the Super Bowl for the first time since 1970. I still don't think it has sunk it yet completely. Anyone who has seen those last couple games, knows they Chiefs went through some crazy things to get to the Super Bowl. Coming back from being down 24-0 to win by 20, 51-31. Completely unbelievable! Then facing the fiercest running back in the league, many thought we couldn't do it, yet we shut him down and made a mediocre quarterback try and beat us. Didn't happen. Those last 5 minutes of the game sending my Chiefs to the Super Bowl were euphoric. I cannot wait for this Super Bowl. But I am sure my strong will pushed them into the Super Bowl, so yes, I take all credit!

This year, I also want to reconnect with some friends I no longer chat with or we have distanced some from each other for whatever reason. I miss my friends. So I need to find a few stragglers out there who need to be bothered by me!  I hate that I cannot leave with out oxygen, or walk well, but I should still be able to text or call or whatever. If I have said anything to anyone that may have offended you, I promise, it truly was not intentional! And I will do all I can to win ya back!

Which leads to my goal of doing everything I can to get off constant oxygen. I know I can do it. If I can beat dialysis, pneumonia, getting an artificial trache out after 18 months while being told it will be mine forever, etc. then I for sure can exercise these giant lungs of mine to bring in the O2 needed to keep me living without help. So the lungs need to be worked, and those that know, know the torture device they give you to do that. And it is rough, but... I can do it.


Another goal is to get back my artistic skill. Long ago before I declared Utah my home, I was a fine artist. I would paint and draw and do cool things like that. Then I found Photoshop and never looked back. But this year, I am going to get back to drawing and see if that artist is still here. Maybe pick up some oil pastels or some acrylic paint. Or even water colors. Who knows?

I want to get out more. Go eat at my favorite restaurants. Get back into watching movies at the theaters again. You know, have fun! Maybe take in an NFL game in Las Vegas next year. Or go out on a Friday night. Life fighting Multiple Myeloma is a secluded no fun fight, and even though there is some risks, going out and enjoying life again would be so fantastic.

       Yet another thing you might not know is that I also love to collect pins.   I have a fun collection, including pins that I love and represent me and my other hobbies.   As well as pins, that I also love, that others have given me as that represent them and their trips or hobbies .   I would love this year to include all of you in my collection.   If you see a pin (or have a pin) that you would be willing to give me, I'd love to have it!   Pop it in a card and send it my way with a note.   Or even better, stop by for a visit sometime (as long as your aren't sick ;) *wink*) and give it to me in person. 

      Finally, I'm excited to share with you another epic addition to the Iron Lion team.   For Christmas my sweet bride commissioned from one of my favorite online comics, Woody Hearn of GUComics,  his interpretation of the Iron Lion.    He just finished it and it's awesome!   Some people may not understand why the Iron Lion is such a part of me.   The Iron Lion doesn't represent my Myeloma, it represents the fight, my fight.   

This is my fight song

Take back my life song

Prove I'm alright song

My power's turned on

Starting right now I'll be strong

I'll play my fight song

'Cause I've still got a lot of fight left in me

 The year of the Iron Lion is about taking back my life!

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.