No Room
In the past several weeks, Chris has continued to improve and gain strength. The home physical therapist was so impressed by his improvement that he said he no longer needs to visit. He's also able to get around the house without a cane. To come so far in just a month is amazing! As well, he's strong enough that we've been able to return to sleeping in bed. What a huge blessing!!
This week we started a new, old chemo. Insurance wouldn't approve the original treatment plan, so they changed to Daratunamab/Darzalex. (Which he was on for almost four years) combined with Carlfizomib and Dex. He has tolerated those both fairly well, so hopefully restarting them will maintain or deepen his response from the last chemo. Even though he had been on it for so long, they had to run the infusion as if he had never had it going SUPER slow. It was a long day. But, one benefit is that we'll be able to get his next treatments at the South Jordan location instead.
The results of his bone marrow biopsy also came back. There were several and it's been years since he's had one so we aren't as familiar with how to interpret them, but felt there wasn't anything alarmingly bad. We asked Sam (the PA) and he said that everything looked as good as we could hope. They were able to get a good sample. It shows approximately 1% cancer cells in his marrow. A good, small number. At diagnosis it was 90% (if I'm looking at the right number in the right test). As well it also show that the cells have the CD38 marker. When we stopped Dara they mentioned that it might have quit working because the cancer cells were no longer expressing CD38 so I've been worried. It's a good sign that Dara will likely work. Finally, the FISH (genetic results) show no high risk mutations.
The biopsy shows that the issue is more with the extramedullary masses in his abdomen. His PET scan shows significant improvement there. The ones in his lower abdomen are gone and the single one we could feel in his upper abdomen is smaller and less active. Everything combined paints a much better picture with more optimism and hope for the future. But still so very complicated.
On Thursday we made some simple plans for the weekend. But that all changed Friday morning. His heart rate was elevated, he was winded after walking and something felt off. We contacted his team and decided a visit to the ACC (Huntsman's version of an ER) was best. They made an appointment and we headed up.
They one thing we didn't check at home, his oxygen, was in the low 70's when they tested. He was put on various masks and oxygen levels as high as 15 liters before they settled on a bipap. Which brought his oxygen back to the normal 90's. They ran a ton of tests to figure out what was wrong. They talked right away about moving him to the ICU, but there were no rooms at Huntsman. So he was transferred to the UofU MICU (Medical ICU, they have multiple ICU's). Uggg, we've had horrible experiences here, and hoped to never come again. But well, here we are.
There were numerous things we thought it could be. But it's been one we hadn't considered. Rhinovirus...the common cold. Grateful that so far the other things aren't the likely cause and hoping he'll be on the mend and back again soon.
Aside from a terrifying moment where they were swapping from a high flow nasal cannula back to the bipap, where his oxygen dropped into the 30's within about 10-15 seconds today has been a fairly uneventful day. He's feeling better today than yesterday and was able to work with PT to get moved to a chair. We've been sitting overlooking the snowy valley with the world cup playing in the background. At least the room has a nice view.
Serenity
It's been almost three weeks since we returned home; being home is working it's magic. He has started to transition to using his lion cane instead of a walker and now has the strength to better stand on his own. Getting in and out of the house is also improving. The home PT said he is very impressed with his progress and that he's week's ahead of where the thought he would be. Thursday started the final "rest" week of this chemo cycle which is always a welcome break. Chris has been focused on healing and I've been anxious wondering what's next. Both dreading going back inpatient before the end of the year or possibly spending Thanksgiving or possibly Christmas in the hospital
We met with Dr Sborov (and Dr Cho his kidney doctor) this week. His myeloma blood markers are much improved, the chemo has helped us achieve at least "partial response. As well, his kidney's numbers have recovered to nearly normal. His blood is still recovering and he's anemic. The thing Dr Sborov said that stuck with us most was:
"You have proven to me that you are as strong as an ox. You walk up to the line of death, laugh at it and walk back. Then all the sudden we have disease control again. We must stop doing that."
My heart wholeheartedly agrees.
This year it's been incredibly frustrating to see our insurance being the thing holding us back. Dr Sborov is very frustrated as well, as he see's it hurting patients... like us. It makes him very angry, us too! His top choice would be CAR-T which they declined earlier this year. It's been FDA approved for over a year. He's going to keep trying. He heard that they might approve a different "brand" of the treatment, but there is only one slot per month and the next available slot for collection isn't until January and so he wouldn't get the actual treatment until likely March. His myeloma can't wait that long.
Another top option, the new drug we mentioned at the end of August (Teclistimab) was finally approved on October 25th. They can't even submit for approval until Huntsman has it in hand, which won't happen for a couple weeks. It's a cheaper "off the shelf" medication that has great responses similar to CAR-T and doesn't require as strong (if any?) of a chemotherapy before hand and less time in the hospital. However it is highly doubtful that insurance will approve it at this point.
The other option is the stem cell transplant. It comes with significant risks and would require several weeks in the hospital. It would be less risky and yield a better result if Chris were stronger before we undertook this, but they can only undertake it if they have disease control. It's something we've talked a lot about over the years and the chance to do it diminishes the further we go.
So, while we wait for insurance to drag their feet, we are continuing to do what we can. This week is a busy week! In addition to the fundraiser car wash early in the week, which we are so grateful for, we also have a PET scan on Monday. We're praying that it will provide information that supports the blood markers and will provide Dr Sborov with more information about his myeloma. On Wednesday they also have plans to do a bone marrow biopsy. He hasn't had one in almost five years. They are extremely painful and not always successful. But the information from one would be valuable and so he is going to try. On top of that they will be removing his dialysis and PICC line and placing a subcutaneous port. That is a lot for one day, but the change of lines will be a huge blessing. Once healed it will be possible to take a full shower. As well their removal along with continued increase of strength will mean we soon will be not just sleeping at home, but sleeping in bed.
Speaking of sleeping...to hopefully keep his myeloma "sleeping" as long as possible, we will be starting a new chemo on Wednesday before Thanksgiving. IsaKd (aka IKEMA) which is Isatuximab + Kyprolis (Carfilzomib) + dex. He will start with Isatuximab which is a similar medication to Daratumumab which worked well for us for several years. If he tolerates it well, they will add in Kyprolis on week three. This treatment will hopefully be all outpatient so hopefully will not need to spend another night in the hospital this year!
Knowing that serenity is what I crave, perhaps with so much going on this week, I think I'll recite the serenity poem in my head. Especially the first part of the second verse. "Living one day at a time, enjoying one moment at a time..."
My goal this week is to take some time to enjoy the happy moments and add in a few where we can. My favorite peppermint shakes are back at Chick-Fil-A this week and I've also heard that there is a new peppermint frosty at Wendy's. We must try them both!
One Day at a Time
In a surprise turn of events, Chris was released this week from Huntsman and we are finally home! Almost two months in a hospital is a LONG time and we are so grateful to be home. In the few short days that we had returned from Encompass, Chris had been making progress with therapy, but the timing of his release was sooner than we expected. Simply getting into the car at Huntsman and then out again and into the house took lots of planning and patience. After being stuck in a hospital bed for so long walking, standing and stepping take a lot of effort and energy. Each day seems a little bit better than the previous and we are getting better at knowing what he needs and his limits. I'm sure it's frustrating to be so reliant on others and I know he is eager to regain his independence. But it is going to take time, patience and hard work and we are focusing at the end of the day on acknowledging the progress he made that day. Recovering from the physical trauma of the past two months will take time, and we hope and pray that his myeloma will cooperate with what he needs.
We could not have made it through this week without his nephew, Isaac, who was willing and able to come to stay with us. He has been an amazing help. His strength and patience have been invaluable. He's willing to do anything we need and the peace of mind knowing that he's here is a huge relief to both of us. Thank-you Isaac!
While it would be nice to be able to stay home and recover, his chemo and kidneys make it necessary to be followed carefully. We are supposed to go almost every other day to the hospital for labs and treatment. The new team of doctors for the week thought it would be better to leave his dialysis line "just in case", but there are plans to remove his dialysis port and his PICC and place a port in about two weeks. We aren't sure what the next step will be after that, so for now we are mostly just living day by day and will face that door when it comes.
However, there is one good thing ahead in the future. A good friend has also given us a great opportunity and offer of assistance. On Monday November 14th, the Quick Quack Car Wash in South Jordan (on 114th South, just north of the Distric) will be having a grand opening and will be doing a fundraiser in our honor. It's a great opportunity to get a great car wash and help us in the process. Chris will soon be creating a Facebook event with more details and we would appreciate all the help we can in spreading the word. Resilience & Redemption
After almost two weeks at Encompass rehab hospital, we returned to Huntsman on Thursday for more chemo But before I get into what happened this week, I must back up a bit. Before we left Huntsman he had stabilized medically but being stuck in ICU had weakened his body. PT and OT we knew were critical in his goal to get home. A few days before we left, one of our favorite PT's (Michael) was back after being off for a few days. He has been amazing to work with and always made Chris feel safe. He was gaining strength and we were so happy that Chris was doing great at moving from the bed to a recliner on his own two feet, but then things went south. He was inches away from being where he needed when his legs gave out. Despite our best effort to prevent it, Chris slid to the floor. It was heart breaking for all of us, Michael included. Gravity is the nemesis that brought us here, and falling again was so disheartening.
Michael worked with him in the ICU and knew had seen Chris in the worse of times. He was amazed at how Chris was always willing to give his best effort even on the worst days. It's not a trait he see's very often here at Huntsman, and he admired Chris because of it. He said he would always jump at the chance to work with him. Back to this week, he made good progress while at Encompass. There were some amazing PT's, OT's, Dr's and nurses there as well. We both liked a schedule that was a bit more structured. He did a lot of different exercises and strengthened different muscles. The last day was a bit discouraging as we hoped he would be walking that day, but unfortunately things just didn't work out for that to happen. We however were super grateful to get the extra week of extra therapy and that his myeloma cooperated in allowing us to do so. As well, his kidney's were also doing well that they skipped dialysis on Wednesday.
We arrived back to Huntsman on Thursday afternoon to start cycle two. I don't think I mentioned what they did last time, it was called modified CVAD + Carlfizomib. (Cyclophosphamide, Adriamycin/Doxorubicin, and Dex + Carlfizomib). I couldn't help but reflect just how far we had come in the past four weeks and the miracle and gratitude that he is still here. It really is that, a miracle. It also was the day after his 5 year cancer diagnosis. We didn't know if we would make it this far, and we are optimistic that we can continue this progress. I'm trying very hard to just enjoy the present and not worry about the future. It was a day filled with a a lot of emotions, but among them was a profound sense of gratitude.
The chemo and supportive meds have been a constant for the past four days, but it's also been wonderful to see him continue to progress as the weekend went on. The kidney doctors are happy with how things are going and he hasn't needed dialysis. In fact, they are scheduling his dialysis port to be removed tomorrow! I was hopeful that he would be done with dialysis before Thanksgiving, but before Halloween had never crossed my mind as a possibility, that's amazing! Coming from a time when he had so many lines it was hard to count, we are finally at the point where he is down to just one!
Heaven and Hell
After many, many long days we finally were released from Huntsman to an impatient rehab hospital in Sandy last Saturday night. Chris got to breath in fresh autumn air and see a glimpse of the sunset before they loaded him in the ambulance for transport. Compared to the crazy high 100+ days that we were experiencing the week we were admitted, it was a nice change.
The original plan was to return to Huntsman this past Thursday for more chemo. However knowing he has quite a ways to go to gain strength I asked Dr Sborov to give us more time here if he thought it was possible. With how aggressive his myeloma became it was a tough call, but he agreed and they moved the chemo plan to next week. It's encouraging to see him progress. Dialysis three times a week really zaps his energy, but he is dedicated to getting better and regaining his independence. We are hoping in the next couple days he'll feel strong enough to stand and that before we leave here he'll feel comfortable walking a few steps. That way when he starts chemo next week he can maintain and hopefully continue to progress.
One thing we both were worried about was if I would be able to be with him while he was here, so it was a relief to both of us to find that I can. The past few weeks I've also started to work from the hospital. It's both a blessing and a challenge. It's a blessing that I can work remotely, but a challenge because it makes already long days longer. A blessing in some ways because it helps life feel a bit "normal", but also a challenge because I struggle to find the right balance. There's much to do here at the hospital, much to be done at work and also much to be done to try and pick up the pieces of our life that have been neglected. One of my most favorite moments has been at the end of the past few days I've climbed into his bed at the end of the day and snuggled in his arms. Something we haven't been able to do for weeks, it really is a piece of heaven on earth.
The past month and a half has been a tough battle for Chris. Fighting and defying the odds of not just one but two nearly catastrophic medical events. I think for now he's transitioned to healing instead of surviving. The precious moments of being able to talk or snuggle with him are are such a gift to both of us and very healing to heart and soul. Often times, we may not know what to say and resort to saying "I love you" over and over. That's OK, because it's true.
Aside from another round of chemo we don't know much of what the future holds. But I'm grateful that we will be together through it all.
The Playlist
Last week on Monday, as Chris was emerging from the darkness of the horrible week before we had te opportunity the have music therapy come. A sweet young woman came with her guitar and offered to play songs for us. The therapy was good for both of us, and tears streamed down my cheeks the entire time. The three songs Chris picked were:
Over the Rainbow-Israel Kamakawiwoʻole
Amazed -Lonestar
Livin’ on a Prayer-Bon Jovi
His song selections were thoughtful. The first had me grieving for the simpler times of the past, and longing to "Wake up where the clouds are far behind me" and have "trouble melts like lemon drops".
The second song was a special request to celebrate a belated anniversary. It's been one of our songs since before we were married. How so very much "I wanna spend the rest of my life, with you by my side".
The final song could have been our theme song for the past month. Livin on a Prayer. We couldn't have made it this far without countless prayers being said by us and on our behalf.
After two long weeks, he was moved back to a regular room on Sunday. This week he's making progress. Healing takes time and he's got a lot to recover from. Medically he is stable, but he needs more therapy to recover his strength. In the next few days he will likely be moving to an inpatient rehab hospital where he can receive more therapy.
Today music therapy came again. I teared up a little, but didn't cry as much this time. The past week seeing Chris improve has been good for my heart. The three songs he chose were:
Roar - Katy Perry
Take Me Home - John Demver
She slightly tweaked the words of the first song to fit perfectly his fight against cancer as the Iron Lion. The second song, very fitting of course. We both can't wait to get home, to the place where we belong.
These lyrics from Amazing Grace were perfectly fitting of the past 5 weeks.
"Through many dangers, toils, and snaresI have already come
This grace that brought me safe thus far
And grace will lead me home"
Hopefully one day soon, we will be back home...
The Impatient Patient
As we finish an entire month inpatient here at Huntsman, its been another long week and we are still in the ICU. Chris is growing increasingly impatient and super eager to get home. A sign to me that he is feeling more himself. I hope that getting home will be possible soon, but unfortunately I think we still have a ways to go. His body has so much to recover from and healing takes time.
We thought we would move from the ICU on Monday but his kidney's still needed more TLC. He was on the continuous (CRRT) dialysis for most of the week. On Thursday they took him down to IR and replaced the line in his neck for a tunneled line. Something that is more comfortable and poses less infection risk. With the new line this afternoon they have been doing traditional dialysis and mentioned likely will return tomorrow. His blood pressure is still on the low side so they haven't been able to remove as much fluid as they would like, but he was able sleep peacefully through it.
He has slowly been working his way down on number of tubes and IV's. On Wednesday night they removed his feeding tube. He doesn't have much of an appetite so I keep trying to encourage him to eat. He will spend forever looking over the menu, but nothing sounds good and he only eats a bite or two. At one point he was disconnected from all IV's. It didn't last long, but it was a milestone.
As an expected side affect of the chemo, he has needed three units of blood this week and likely will need more. This is such an important part of his treatment and we are grateful for the amazing people who donated so he could have this precious infusion. I know there are so many people who want to help. It would be AMAZING if there were people reading this who could donate blood. It doesn't go matter that it can't go to Chris specifically, just having people donate so that that this life saving treatment is available for others who also need it would be a blessing.
They ran his myeloma markers earlier this week, but they take several days to come back. They run a TON of labs while in the ICU (no wonder he needs blood). Because of the blessing of technology we have access them quite quickly in an app. I've been anxious each time a notification pops up that a test result is available. This afternoon they popped in. His light chains were at just over 1000 on 9/9, climbed to 1600 on the 9/15 and then 3100 on 9/22. On 9/28 they are down to 815. Whew! Still high, but a huge improvement in just a week.
As well, today for the first time in almost two weeks. Chris was able to put his feet on the ground and stand. This months challenge knocked us both off our feet, but little by little he is overcoming some immense challenges. Hopefully the coming days will allow rest and healing, so that he can gain the strength needed to return home.
Calm Heart, Calm Mind
Over the past two days, Chris has made so much progress. Friday afternoon he emerged from the darkness that engulfed his mind. The light came a little at a time, and brought with it portions of peace and joy. He has progressed from saying just a few words, to being able to answer the simple questions that somehow became so difficult. How hard and frusterating it must have been for him to not be able to respond to the question "What is your name?"
Last night he had a visit from Carmen and Isaac. It was music to my soul to hear him laugh. He even played a mean trick on Carmen, causing her to nearly jump out or her skin.
Today he has been so grateful to do such simple tasks that we all take for granted. He petitioned his nurse constantly to allow him to have an ice cube. Then another, and another. He complains to his nurse about the great ice cube shortage of 2022. I can't even fathom how dry his mouth must feel after almost a week without a drink.
When he worked with Jane from OT, he was so excited to brush his teeth. The simple movement of untwisting the cap took such effort, but he was determined. Brushing his teeth "felt like heaven." Profound sadness also crossed his face when she showed him his reflection in the mirror. Dialysis lines protruding from his neck, a feeding tube in his nose and an oxygen cannula dangling awkwardly trying to fight for a place to be.
As I've lain my head on my pillow each night, it is so easy for the horrors of the past few weeks to come flooding back. But repeating the words of Dr Sborov have helped push them "Calm Heart, Calm Mind". Today they will also be filled with the tender moments spent side by side with my sweetheart. Sometimes words aren't necessary to communicate the profound gratitude for being able to survive this trial together and the promise of eternity together.
Purgatory
Today while talking with the social worker, she very accurately described the past two days. Purgatory.
Yesterday they did another CT to check his abdomen. After that the removed and replaced his dialysis line. The new line is still a bit positional and finicky but we've been much more successful with being able to run it. His kidney numbers are finally trending in the right direction.
It appears however that at some point, the difficult mental state he is in may not be from his kidney's but from the high ammonia levels caused by aggressive myeloma. Which unfortunately are higher today, even with a good night of dialysis.
I talked with Dr Sborov at length and he has researched and discussed with colleagues here and across the world. I gave consent for to start chemo last night. It comes with risks for bleeding and infection.
His brain is still struggling, but trying so hard to function. Yesterday he said mainly just one word, today he has added more. When one of the providers checked on him, he did squeeze her hand and very slightly wiggle his fingers.
Hopefully this weekend he will improve as the chemo fights the myeloma. There is a nearly impossible battle waging. Now is a time for patience and prayers.
Purgatory can be defined as a "having the quality of cleansing or purifying". Please let it be cleansing his body of toxins and myeloma.
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