Adventures with Multiple Myeloma, a Brain Tumor and Tracheal Stenosis

Heart, Brains or Courage

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

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

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

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

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

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

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

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

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

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

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

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

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

My Warrior

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

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

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

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

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

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

Bubbles

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

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

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

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

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

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

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

The Fenceposts

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

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

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

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

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

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

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

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

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

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

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

Home Is Where My Heart Is

An entire season has past since I last blogged. The summer has been filled with miracles, memories and lots of time together. Each day we are grateful that through this storm (and beyond) for the ability to be working from home. I am so very grateful for the home which we have that's filled with so much love.

Although the risk of catching any illness is always something for us to worry about, I yearn for the day when all of us don't have to worry about being too close, wearing or not wearing a mask and the embrace of a hug is one that can be done only with love and not accompanied with a tinge of fear.

This week is the start of cycle 33 of DRd (#38 of chemo of all). Out of the blue, several people reached out to check on us this week and it brightened our week. As well, for the first time in many months the visitor policy at Huntsman had changed to allow me to attend chemo with him this week. The nurses there feel like family and it was good to see them again.

As we've been trying to navigate our way in a world with a pandemic while battling cancer, it's been hard to know where to find balance. In July, COVID levels were escalating statewide and Dr Sborov decided again to cancel Chris's infusion of Dara and just do Revlimid and Dex. As well, to avoid Chris having to even go out they even canceled his labs. This is something they haven't done before because accessing his port once a month keeps it working. It was a sobering reminder that despite what some may say, COVID is a real danger for us and our efforts to keep Chris safe are important. Numbers now are worse than they were then and it is getting closer and closer to home with several in our neighborhood in quarantine because of potential contact. As sad as it makes us, we've canceled plans for a fun small Halloween party and determined that we likely will not attend any family events for the holiday's. We've found that Cancer alone is often lonely and are very grateful to have each other, but miss seeing friends and family. Aside from John, it's uncommon to have someone ring the doorbell, that when someone does there's also a moment of panic... should we get our masks out of the car? We are used to wearing a mask when we leave the house, but have yet to know what to do at home.

One Saturday night in July, we were headed to bed. Chris has struggled with fluid balance issues ever since his diagnosis and it has been worse than ever lately. He stepped strange and immense pain shot through his leg and he heard a horrible sound from his right knee. We both had a sinking feeling that things had just changed drastically for the worse. He was in extreme pain and the tears of pain running down his face broke my heart. He's a tough man, who has dealt with an extreme amount of pain, and tries to hide it. But this was too much. I feared surgery was in his future and I tried to figure out how I was going to get him to the hospital. Huntsman's policy of no visitors during this pandemic, has been hard on both of us, and he's been pretty adamant that he does not want to to go the hospital without me, even if he is sick. There was no way I would be able to get him to the car and I knew for sure that convincing him to let me call an ambulance was going to be an uphill battle. We decided to sleep on it. Somehow we got him to bed and I got him as comfortable as possible. It was a pretty sleepless night, we both woke up to him screaming in pain on more than one occasion. When we weren't sleeping I know we were both praying.

It was slightly better the next morning. He stayed in bed all day, keeping it elevated and avoiding moving as much as possible. By Monday however he was able to get up and about. He needed to rely heavily on me anytime he moved, and again we were both filled with gratitude that I was working from home and could easily pause what I was doing for a moment when he needed me. It slowly healed over time, and occasionally still is painful but he is doing much better and we are both so grateful for the answered prayers and the miracle.

On a happy note. We had a great opportunity in early July to attend a Garth Brooks concert. It was something on his bucket list and we had been able to attend one years ago. For me, who isn't a country music fan, I had an amazing time and it's been a happy memory to look back on.

For Christmas last year my Grandpa gifted us each some money and told us to use it on something we normally wouldn't. Depending on how Chris is feeling, leaving the house is a challenge and attending a regular concert would take a lot of effort with the potential to have to cancel last minute. Throw COVID in the mix and it likely would just be stressful.

But this, it was a magical. It was a beautiful evening. We packed some of our favorite snacks and enjoyed the concert from our vehicle, all while staying safe. We sang along to songs and enjoyed the cool evening breeze. Garth even sang one of Chris's favorite, but not super popular songs. A good friend and I were talking the other day about some of the good things that COVID has changed. If it weren't for everything going in, such a concert would likely never have been considered. I can only imagine how many other people, in circumstances similar to ours, also enjoyed the concert that night. One they otherwise likely wouldn't have been able to attend.

In early September I was able to go with Alicia, a good friend from work, and escape the heat to the sanctuary of the mountains at my Grandpa's cabin. We spent time relaxing, doing puzzles and making crepes. It turned out that my aunt Roxann was also there that weekend, she too seeking sanctuary from the troubles of the world. She took us kayaking at sunset. The lake was not it's typical calm at sunset. As we battled the waves, the lyrics to a song filled my mind.

The winds and the waves shall obey thy will:

Peace, be still.

Whether the wrath of the storm-tossed sea
Or demons or men or whatever it be,
No waters can swallow the ship where lies
The Master of ocean and earth and skies.
They all shall sweetly obey thy will: Peace, be still; peace, be still.
They all shall sweetly obey thy will: Peace, peace, be still.

Last month we also celebrated our 20th anniversary. While we would have loved to spend a week in a tropical location with waves, current situations eliminated that possibility. We celebrated instead at home by surrounding ourselves with all things tropical for the week. Eating food that reminded us of our 1st anniversary in Hawaii, watching shows about tropical places and dressed in tropical shirts. Our good friends even bought us food from their favorite Hawaiian place. We are still in shock that already 20 years have passed since the day we became one. The saying that time flies while you are having fun must be true! In a message with my brother this week he said that I was a great example to him of devotion, what a kind compliment. I feel it describes not just me, but our marriage as a whole. We are both very devoted to each other. To each other's health, happiness, security, comfort, well-being and love. We are so lucky to have found one another.

As the seasons now change from summer to fall we also face another anniversary. October is a tough month, filled with many mixed emotions. It's been three years since Chris was diagnosed with myeloma and our world changed to one where chemo is our normal. We have adapted and adjusted to so many changes. It has brought us even closer together. With a deep love for each other and appreciation for the time we have together. As well, there is hope on the horizon. They are making great progress in treatments for myeloma. Sincere gratitude to those who have helped us make it this far. Your texts, cards, phone calls and other messages or offers of support have always come at a time when we needed them most. Thank-you!

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?