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.
Smiling Into Your Eyes
This morning the dialysis tech came in the early hours of the morning and did a session of dialysis. I was a bit surprised to wake up and see the machine gone because I thought they were doing a different type of dialysis called CRRT (continuous renal replacement therapy) and not hemodialysis like we did five years ago. CRRT is a slower dialysis that is run 24 hours instead at a slower pace. It's great that he was able to tolerate the other kind and I was hopeful that he would start to "wake up". But it was not so. I spent part of the morning trying to clean the glue and medical tape out his hair. Last night when they removed the leads they used acetone, but I just used patience, some washcloths and a napkin. There is still quite a bit to be cleaned, but we at least made progress. While he struggled to open his eyes, it was surprising to me how helpful he was in trying to brush his teeth. It was clear that he was participating and it probably felt so good. Since he has a feeding tube for all of his food and meds, his mouth looks so uncomfortable.
We also had a visit from a new set of doctors, liver doctors (hepatologist). They had been asked to consult because Chris has high levels of ammonia (hyperammonemia) in his system, which is yet another thing that can cause confusion. They talked a lot, but didn't say much. Essentially the ammonia is concerning and a sign that there could be issues with his liver (like cirrhosis or fatty liver disease) but it could also be attributed to his failing kidneys or myeloma. When his nurse was doing shift change she summed it up as "his levels are concerning but could be attributed to other things, but they were brought in to see if would be safe to do chemo". No word from Dr Sborov today, so I'm think they are working hard to make sure they can do so safely.
They decided to start CRRT dialysis this afternoon which didn't go all that well. They hooked everything up and tried to get started, but there were issue with his central line which caused the machine as a safety to stop. They did a large IV of heparin to thin his blood, and albumin to plump up his veins and arteries. The line which they placed yesterday wasn't quite long enough (sound familiar) and didn't quite go deep enough. The vein or artery (I can't remember which) is also a bit "floppy" and whenever he coughs or rolls his head it suctions to the side wall and stops the machine. They have to pull or push the line to get it to unstick and then restart the machine. It has to happen quickly or the blood that is in the various parts of being filtered will clot and the entire filtering system and his blood in it has to be discarded.
His poor nurse, Amber, became the third wheel to our anniversary party. When he started the CRRT he became her only patient. But anytime she tried to get anything done, he would move or cough and she would have to fix the line. At one point I stood and held his head and kept him from moving. I'm pretty sure she was so relieved to be done for the day.
However, I think we may have finally found the magic combination. Along with a couple other things, I suggested that we let gravity do some of the work and put pillows under one side to encourage his head to stay put. To try and avoid bed sores they have been trying to move him every few hours, but the importance of cleaning his blood trumps bed sores so hopefully tonight the machine can do it's thing and help clear up the gunk in his system.
Today was one heck of a way to spend an anniversary. Definitely one to forget instead of remember. Hopefully tomorrow the deep fog that he has been in this week will lift and we'll be able to look into each other's eye's. No words will be needed, but they will be welcome if they come. We've been through so much, and there is much still to overcome. But we've still got a lot of love to share with each other.
The Little Details
Today was a quiet day in the ICU. His kidney's aren't doing any better and while I know he preferred to not do dialysis we've reached the point where it is the next step. He wasn't coherent or awake much today, but there was a brief moment when we were alone and he was able to tell me he loved me. The doctors needed my permission to install the central line which they placed around eleven. It was placed in his right neck and looks so uncomfortable. The timing ended up working out great as I was out in the waiting room waiting for them to complete the procedure in his room when I had a visit from my mom and two of my aunts. The dialysis tech brought the machine up, but had to leave do to an emergency dialysis needed in the NICU. (How sad!) Earlier in the day his nurse who was training another was talking about them sending him down for an MRI of his spine to check for infection there was explaining to her that patients in the ICU typically take priority over most others in the hospital. They are also apparently difficult calls to be made when it comes to ICU patients. They hopefully will be back soon to start tonight as I worry about waiting too much longer.
I also had a visit from Dr Sborov. It appears that he is going to be tapping in as part of the team. His myeloma numbers came back and the are climbing. His m-spike is holding steady, but his lambda light chains are higher than when we checked them after he was admitted. There are likely different versions of myeloma cells in his body and the ones that cause his m-spike are steady, but the other is raging. His light chains are about half as high as they were when he was diagnosed. With the extremely delicate state of his kidney's the decision to start chemo is not one he takes lightly, but he thinks its time to start chemo. He would like to do CyBorD, which is the original chemo he did when he was diagnosed almost 5 years ago. He also wants to also add Darzalex (which was part of his second chemo that worked for several years). They are going to work on insurance approval and could start as early as tomorrow.
As he left the room, he paused at Chris's bed and gave him a pep talk. He talked to him as if he was awake and told him that his brain will get better and the he needs to fight.
The next few days are going to be critical and Chris's desire to live is going to be more important now than ever before. He's got a lot still to fight through and we'll take wins where we can. Tonight while I was visiting with Reed the EEG tech arrived to remove all the wires from his head. They didn't find anything conclusive in their study. They had hoped to catch him going into one of his "episodes" but since he's been pretty out of it most of the past few days they were unable to.
Who knows what tomorrow will bring, but for me, I'm hoping it brings Chris back to me. To talk with me and fight to be together. It is after all our wedding anniversary, and that would be the greatest gift. I supposed if necessary it may be a day or so late. I know he's there struggling through the fog.
Back Again
It was super hard to leave on Saturday night, but the idea of sleeping in my own bed was so tempting. So when things had quieted down for the night, I quietly slipped out. I wasn't home very long when I got a text from Fred that he wouldn't wake up to take his medications. Fred thought that we were pulling a trick on him, not quite the simple night I had hoped for. They took him down for another CT which was unchanged. Things calmed down and they put his CPAP on and he slept. Sleeping in my bed was wonderful, even if I now have a habit of waking up every couple of hours thanks to the way things are at the hospital.
It made my heart so happy when in the morning Fred told me that he was very talkative and alert. Chris had been singing to Chris in his sleep, so I don't think Fred got much sleep. I headed back up to the hospital and he was having a much better day. He was still tired and would nap, but was fairly conversive. He was determined to stand up during PT. Fred returned home and Tammy and Mark stopped by for another visit. They had planned to place a dialysis line today and he wasn't supposed to have anything to eat or drink after midnight. He hasn't wanted to each much (a protein shake and a banana now and then) and they have limited his fluids to 2 liters.
This morning was a simple morning. OT came to work with him so I worked for a little bit waiting for him to wake up. However at about 10:00 he wouldn't wake up for his nurse to take his meds. She gave him a bit more time, but then things progress quickly. Before I knew it, the rapid response team was here from the ICU and they were moving him back up to the ICU. He wouldn't respond to sternal rubs, pain or yelling. They ran more labs and decided to try Narcan again. He didn't respond to the first dose, but then about 5 minutes later he opened his eyes and started talking to his nurse. But then was back asleep. They tried a second dose with no change and decided to also try a slow drip of Narcan. They stopped most of his medications earlier this week and the doctor said he thinks it was just a coincidence. About 1:30 he woke up.
He's been mostly awake for most of the afternoon, sometimes able to answer questions, sometimes not. They wired him up again for a STAT EEG, this time one that will monitor the electrical activity in his brain for the next 24-72 hours to watch for seizures. We have noticed him twitching more the past few days. Sometimes his right leg, sometimes his left hand like it's asleep and he's trying to wake it up.
While one of the providers was here, he was talking and said he had a strange request. He wanted a soda. They did a couple test swallows with some water and he did OK, so they said his nurse could give him a few sips. He told her she was his best friend and then told me after that he hoped she didn't get in trouble. I assured him the doctor had said it was OK.
He had the unpleasant experience of having a feeding tube placed while he was awake. He told the techs that he wasn't a fan and didn't want to do that again. He hasn't been eating much for the past while, especially the past week so even though it sucked I think it will be an important part of healing.
Among all of visits from the ICU team and his amazing nurse today, I had a visit from Dr Sborov. He's still sitting on the sidelines because as far as we can tell the kidney failure issues are related to the infection. He's waiting on myeloma numbers to come back to see how much of a part it is playing. Aside from steroids he had last week, Chemo is on hold to avoid making things even more confusing adding more symptoms or complications. I also had a visit from my parents.
Last I heard, dialysis might be happening tomorrow. There were signs today that he might be turning a corner but labs still show danger. I feel like we are close and they are just waiting for him to turn the corner.
It's been a busy and long day. Hopefully tonight is a simple night with good rest and healing.
Hello There
Another day has come and gone, and today I am happy to say it looks brighter. Yesterday he had a busy morning. He was still quite confused and sometimes would answer, sometimes would just look at you trying to get words out, sometimes answering the same thing over and over. He wasn't able to say who or where he was and couldn't say my name. While speaking was tough, I knew he was still there. If you would say "Hello" he would say "Hello There" in just the right way that he sounded like Obi Wan. A friend described it well...."If Chris is quoting Obi Wan, Chris is Chris" The morning wore him out and he slept most of the afternoon. His blood pressure was low most of the day and they gave him several IV's and talked about moving him back up to the ICU for pressers.
But after a miracle of 12 hours of sleep (a unicorn event in a hospital) today is a MUCH better day. He was super groggy and didn't want to wake up but he had a great OT session with Heather. He was able to form sentences and is much more aware of where he is and what happened. While words were still hard, tears came rolling down his cheeks as what he realized what he has been through. Heather (the OT) was super sweet and said "tears are therapy". She lowered the bed rail and encouraged us to hug. What a sweet and tender moment.
Chris has had a few visitors today, and it just like the adventurer Link from Zelda, it filled my heart so much to hear him carrying on a conversation. Not just words, but full sentences that correctly fit with the questions. He may have struggled at times to come up with the right words, but he's come a long way. As well, he was able to lift his hands to grab things, and joy filled my soul to hear him laugh. I also gave him a banana to eat and unlike yesterday where I cut it into pieces and fed it to him, I handed it to him unwrapped and it was quickly devoured. We had a touching conversation where he asked what happened and I explained the past few days. He so tenderly said "I'm Sorry!". The emotions of the past few days for me came one at a time, but for him I can imagine how hard it is to have all of them hit you at once.
He also had a visit from Betty with massage therapy. She was amazing, She gentle rubbed muscles which were tight and sore and he closed his eyes and relaxed. We hope to see her again.
His kidney's are still not doing well, but I am hopeful that with some more patience and time they will realize that it's time to start working again. The weekend is perfectly timed that hopefully it will be a little bit quieter and he can get the rest he needs to allow things to improve. Today was able to tell me "I love you". It was a good day.
Life in the Dark
I was right. Something was wrong. Very wrong. Yesterday was another insanely tough day. Jane, the occupational therapist who had been working with him regularly the past week is probably the best besides me to notice the difference. Instead of working on trying to get him out of bed, she focused on cognitive function. Asked him lots of questions. Some he got right, some he got wrong and some he didn't answer. He struggled to move his arms and tended to favor his left instead of dominant right hand. She encouraged me to keep trying to engage him. After she left he was tired and it got harder and harder to wake him. I tried. His nurse came in and noticed that things were worse. I'm so grateful for his concern.
He paged the doctors and people kept coming in to ask him questions. They decided to call a "brain attack" code. Before his room and the hallway filled doctors and nurses, a social worker came and sat by me. She said she works with the ICU team and they told me who each of them were and what they were doing. They needed an iv with a larger needle and tried to get that while hooking him up on portable monitors. They whisked him away for another CT and also an MRI. While his room was empty I took time for myself to recenter.
The CT and MRI again ruled out a stroke. They brought him back to the room and ordered an EEG to check the electrical activity in his brain. Took quite a bit of time to hook him to all of the wires. They pestered him with more questions, he didn't respond. They had me hold his eyes open, which he hated. The results showed no seizures, but swelling on his brain. They talked about moving him back to ICU but he didn't meet the criteria. So he stayed here and they monitored him more regularly.
The rest of the night was fairly quiet and uneventful. We both got a little bit of sleep.
This morning we've already had a ton of people in and out. He's been asked all of those questions like that we normally think are annoying, but are important. "Do you know your name?" "Do you know where you are?" He is a bit more awake and will occasionally answer "Yep" but still struggles to move or get words out.
The belief is that as his kidneys have been failing, medications have built up on his system. They mentioned they may do dialysis but his blood pressure is low again that he would need a different type. It would also mean moving back to the ICU.
With everything we've been through, it continually confirms to me just how amazing the human body is. It is simply miraculous and divine that we are alive. When things go wrong, which for us has been a too common occurrence, I continually astonished with just how much it takes to simply be alive. It's a tough fight, but I can see how much he is fighting now to come back to me. The only two words he's put together are "Hey, Baby". He knows who I am, ❤️ keep fighting Sweetheart!
Cancer Never Sleeps
As I sit in an empty hospital room, I have another to add to my list. "Cancer never sleeps." Something has been "off" with Chris since this afternoon. When PT came to work with him in the afternoon he was too tired, so she said she would come back. I encouraged him to order something to eat so he would have energy. As he ordered room service he struggled for words and said his room number four times. I was worried, so I paged his nurse. She asked him questions and checked some things and also brought in the doctor who did the same things. He was slow to answer and struggled for words. His oxygen was low and his heart rate fast and he seemed a bit clammy. They said just to watch him.
Shift change happened, his new nurse asked him more questions and he was giving odd answers, but they just pushed it off and said let's watch.
As we tried to go asleep I just couldn't help but think that something was wrong. He would have moments of lucidity, but couldn't remember short term things. He lacked the symptoms of what I know of for a stroke.
I felt strongly that I should ask for something and suggested a BMP (basic metabolic panel). They had given him potassium this morning because he was low, and since he previously had been drinking something to lower it, it seemed like something had shifted. He said he would ask the doctor. But insisted they would run labs again in the morning, but that was 7 or so hours away.
She came in and did an accessment and I explained my concerns. She said she would run a blood gas panel, which would have the electrolytes I was worried about. They drew the labs which came back fairly quickly. While I googled the results like oxyhemoglobin, HCO3, and hematocrit that were out of normal range I anxiously waited for them them to make the next move.
It took longer than I expected, but they came to whisk him away for a CT scan. They took him away at 11:18 and I watched the seconds tick away until they finally brought him back about 15 minutes later.
He's now peacefully sleeping in bed, which is very unusual for him. He much prefers to sleep in the recliner. I am tired and worried, but suppose I will try to do the same. Not sure what the morning will bring.
To be continued...
Re-Wired
Last night I went home for the first time since Chris was admitted, it always feels weird leaving without him. But it was so refreshing to get a nice shower and fresh clothes. The hospital does have laundry and shower facilities for family members which work in a pinch, but its not nearly as relaxing as being home even just quickly. As I drove back to the hospital it happened to be just about the same time in the evening as when I drove up last, it was comforting to know we are not in as critical of a place. Hundreds of people at the hospital have helped us to get this far, and we know hundreds have also been praying for us. It's very humbling.
Test results for the staph infection finally came back clear. The antibiotics worked! Huge win! Out of caution they did remove his (subcutaneous) port on Tuesday. It served him well for 1,720 days. After his "port holiday" they placed a picc line. They do the sterile procedure in the room. It was very interesting to watch. They placed a device on his chest which shows on a screen where the line is going. It is a fairly new technique which has improved correct placement. Unfortunately they were't successful the first time, and the second time struggled to drop into place. They had to order an x-ray which showed it was a few centimeters away from his heart. Enough for antibiotics and labs but not for chemo.
So, yesterday the "boss lady" who trained the three techs from the day before came to do a "re-wire". True to Chris fashion, something that they very rarely do. Using the same entrance, they removed the internal line for a longer one. Chris said it felt super weird to feel it snaking through his body. As well, they did it as a double lumen instead of a single so it will be more useful. It's oddly placed by his elbow, but with the dual lumen they were able to remove the IV line that was placed in his other arm by ICU. He's been poked a ton this visit as the one from the ER was replaced because it was very finicky.
With the infection cleared, they are ready to clear him to go home on IV antibiotics for a month. Depending on insurance it will either be a continuous IV that a nurse comes to change occasionally or I will be trained on how to do it.
The infection however really wiped out his energy and strength. He is making progress every day with PT and OT, but basic things are a struggle. They want to release him to a rehab/nursing facility. It was hard to quickly search through reviews to find some we thought would work. So when they came back and told us our first three choices were full and we needed to pick again it was discouraging. Trying to pick three more feels like russian roulette. The pandemic and staff shortages clearly have them stretched thin and the weekend ended up giving us a few more days inpatient to work with therapy.
We feel hopeful that if we could just ensure a decent night's rest he will continue to improve, but those are rare in the hospital. We would love to skip the facility and come straight home.
We are very blessed that we've been able to make improvements to our house that makes it so Chris has felt safe thus far, but this is a different challenge. The weakness and fatigue is so much more profound. We would much prefer for Chris to be able to return home, but doing so now would be too risky. As you pray for us, pray for his strength and endurance to return and an added measure for me. Even if a rehab facility is necessary, these will ultimately get him home faster. Strength for me as well as I step up even more as a nurse.
The Woods
On this holiday weekend where many people are enjoying one last camping trip at the end of the summer, we instead hung out in woods of a different kind. Things are improving and we are no longer deep in scary forest with fear and uncertainty lurking. Instead we have traversed the deepest and darkest of the woods and have reached a clearing. Still surrounded by tree's but with light filtering through the trees. Not quite out of the woods yet, but away enough from danger that we feel safer. His blood pressure was finally able to stabilize and he no longer needs the norepinephrine to keep his blood pressure up. It's still low, but not dangerously low. With that stabilized we were able to move from ICU to a normal room on the BMT floor. He no longer has a blood pressure cuff monitoring every fifteen minutes and they were able to remove the "tele" (telemetry) to monitor his heart.
However, the cultures they took on Saturday came back and still show infection. The infectious diseases doctors are concerned. They were hoping that the antibiotics would have wiped it out by now. Since staph is "sticky" and likes to stick to plastic and also other places in the body, we met with the doctors from Interventional Radiology to remove his port. He has had it for almost five years and it's been a huge blessing so we are sad it has to be removed. We thought they were going to remove it today, but with it being a holiday it got pushed back to tomorrow. He will have a "line holiday" for a couple days and then they will probably put in a PICC line. They mentioned today that he will likely continue IV antibiotics once he returns home, likely via home health nurse. Then eventually he can probably have a new port placed.
As well, while in ICU they did an echo (an ultrasound of the heart) last week to check and see if the infection that has stuck to his heart valves. They weren't able to get a good picture so they want to try a different approach. They want to sedated and intubate him so they can do the ultrasound internally through his throat. We are so protective of his airway after all we've been through that this option is a bit terrifying. They did more cultures this morning, but they take a couple days to come back so there is a frustrating delay to know the current state of his infection.
While cancer doesn't observe holiday's, the hospital does and it was very quiet today. We were just relaxing, minding our own business when Chris was suddenly woke up emptying his stomach. The two different nausea meds haven't helped. In between bouts, Dr Sborov stopped by. He checked on the progress from this weekend and we caught him up with what we knew. Knowing that we have discontinued chemo treatment to do anti-biotics in the past, I wondered if the 4-6 weeks of antibiotics they want to do for this infection would require the same. He confirmed what I suspected. We are between a rock and a hard place. The myeloma is also cluttering up his blood which weakens his immune system. I'm going to leave that ball in his court to figure out. For now I'll just do my best to try and help Chris through the night. I think it's going to be a long night.
How Low Can You Go?
I guess I should have known better than to tempt fate by naming our last blog "Limbo". It apparently tempted fate to lower the bar and push us even lower. Nothing says Happy Birthday quite like a good friend and a team of full of firefighters in your room in the early hours if the morning helping you up off the floor because gravity + cancer has kicked you so hard you can't get up.
I should probably back up a bit, it's been a bumpy ride. They finally got the approval and we started the Bendamustine last week. When checking in for an appointment they were worried about how he was doing with such heavy tumor burden. They talked about doing radiation, but while waiting for a consult for that they decide to have him to do a pulse dose of dex starting right away. Four days of 40 mg of dex. What a way to spend the weekend. It was crappy. But we were optimistic it would help. They wanted to check on his blood numbers so scheduled an appointment for September 1st. He felt slightly better on Monday and Tuesday we tried to just chill. .
There is a common quote that is seen around the hospital about what cancer cannot do. To be honest, it isn't my favorite and every time I see it I quickly pass on by thinking they made a good effort but missed the mark. I think perhaps I should start one of my own. Cancer pushes you to your breaking point, over and over. Cancer has it's own timeline and will cause you to lose all track of time. Cancer will scare the crap out of you. Cancer observes no holidays. Cancer is ugly.
After an eventful early morning we both were exhausted so we napped. Then we had a nice visit from Chris's niece Carmen and her young baby. Some neighbors brought over some delicious cookies and custard. Then we napped some more. He had a quick phone call with his Dad and his friend Scott. Then he napped again. I woke him up so that he could eat some of the amazing enchilada's that his sister in law from Montana figured out how to ship down to him. Then afraid of going back to bed, we slept in the front room.
I had taken some time off work to be able to celebrate his birthday, and yesterday worked a half day in hopes we could do something fun. Instead he again slept most of the day. We attributed the tiredness to the chemo wiping out his numbers and gravity kicking his butt. He said he was too tired to make it to the appointment, but I felt it was important for him to go so we slowly made our way to the door. He was exhausted by the time we made it to the kitchen and we probably should have turned back. But I encouraged him on, hoping that labs would help know how to help him.
He made it to the car, but was too exhausted to get in. He crumpled slowly to the floor, pleading with me to call 911. I don't make a lot of phone calls on my phone and my brain struggled to figure out how to dial. Our connection was choppy and tears streaming down my face, it wasn't my best moment. But the dispatcher sent help our their way and ended the call. They took forever to arrive, but some of them recognized us from the day before. While we waited I texted Dr Sborov unsure of what to do once they arrived. They offered to bring him into the house, but I decided that even though that's what Chris would have preferred, the ER was probably best so that we could at least get labs to know what the problem was. I threw our emergency bags with who knows what into the car and followed the ambulance to the hospital. When we moved into our house I remember saying that it was nice to have a hospital so close, we had no idea how often we would be there.
I had to wait in the waiting room while they got him situated. Then eventually they brought me back. He was a hot mess. His blood pressure was super low, his pulse high and they couldn't keep the heart monitor stickers on because he was drenched in sweat. They were drawing labs and cultures and started him on anti-biotics. We eventually heard the words septic shock. Someone came in and talked to us about admission. They don't have overnight rooms in the hospital, so I thought another ambulance ride was in the works. Instead we ended up hearing about AirMed. Still struggling to stabilize him, they moved us into a bigger room with cabinets filled with all the necessities. A chair for me sat on the side in the middle of the floor away from the cabinets. I wrapped my arms around his discard shirts and tried to be out of the way. With tons of people in and out, they hooked him up to more monitors. The helicopter crew arrived and they were still waiting for confirmation for a room, but it eventually came. Shortly after he was loaded in and took off. It was a ten minute flight just about sunset.
I carefully drove up to the hospital, arriving about an hour after him. He was all situated and had even had a visit from Dr Sborov. Who according to Chris told him that he was very sick. Chris was exhausted but the medications they had put him on had stabilized his blood pressure. It was a long, sleepless, but relatively quiet night.
Today has been a busy day but little bit by little bit they have uncovered pieces of the puzzle. The infections has been determined to be a staph infection. They aren't quite sure where it came from. They tested for MRSA which luckily has come back negative. He is still on medications to keep his blood pressure up. His kidneys are angry, possibly more from TLS (Tumor Lysis Syndrome) which causes imbalance of your electrolytes as the dead tumor cells are processed through your system.
There were a ton of people in and out of his room today, including Dr Sborov and Grace. He's satisfied with the progress that is being made. I could see the cogwheels turning in his head as he contemplated the bigger picture. He also called me Captain Obvious when he asked why Chris was still on Vasopressors and I told him it was to keep his blood pressure up. He calmed my worries and told me multiple times that I did the right thing. However I think my heart sunk a little and I was reminded again of how grave the situation is when he said that Chris wouldn't be around any longer if we hadn't acted when we did.
It feels like an eternity since we started making the journey out to the car, but in reality it was just 24 hours ago. Thank-you to to everyone for your love, prayers and support. We aren't out of the woods yet. He will be in the ICU until they can get his blood pressure stable without vasopressors, then likely moved to a regular room until he is strong enough to go home. With likely 4-6 weeks of antibiotics.
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