Adventures with Multiple Myeloma, a Brain Tumor and Tracheal Stenosis

Longest Ever!

A year ago today on Facebook I posted this picture and said "Longest Day Ever". At the end of April we finally found the reason for his trouble breathing, which he had been struggling with since the fall... tracheal stenosis (narrowing in his airway). The entire next week we tried to get in for a CT. We struggled to get an appointment with a specialist, the earliest available being months out. After a long weekend with little sleep we knew that we simply couldn't wait any longer and on Monday we decided to head to the main UofU ER in hopes that they would see the importance of the situation and consult with the highly recommended specialist there, Dr Smith.

The nurse in the ER (named Michelle) was amazing, she was very concerned and a great advocate. They scheduled him for surgery the next day and then moved us up to a room where we felt tucked away and forgotten. Another long night with with only 30-60 seconds of sleep at a time, his oxygen would drop into the 70's (normal is 95-100) and set off the alarms and no one would ever come. We were both exhausted by the time morning came. They weren't sure when he would have surgery so he wasn't allowed to eat or drink anything all day. They finally took him back for surgery about 9:30 PM and I sat in an empty waiting room. The surgery was supposed to take less than 2 hours, but finally in the early hours of the morning, around 1:00 Dr Smith came and told me he was done. It was a difficult surgery unlike anything he'd seen, he put my mind at ease and said we'd done the right thing by bringing him to the ER. Shortly after a nurse came and took me to see Chris in recovery. It was great to see him, but shortly after I arrived it was apparent that he was struggling. He was on Bi-Pap and the look in his eye was pleading for me to help him. I felt so helpless not knowing how I could possibly help, so I held his hand and told him things would be OK. The nurses were doing what they could, but he was in respiratory distress. He needed more help. It wasn't long before they rushed him down to the surgical ICU and I was sent out to the waiting room. They said they would come get me in about 45 minutes.

The longest day ever became the longest night ever. Sitting in a new waiting room I waited anxiously wondering how he was doing, trying to sleep a little with only minimal success. Someone had come out and said he was stabilized and so I tried to wait patiently for them to tell me it was OK to come in. Finally at 5:00 I decided to try and figure out how to get back to the ICU. His airway was so small (even after the surgery to open it) that they had to intubate him with a pediatric tube. It was so short that they were very concerned it would come out so they had it carefully tied in and his hands restrained. The backup in case it did was taped to the shelf and every shift change the nurses would make sure they knew where it was at. He was also still sedated. As scary as it was to see him hooked up to so many things, he was so peaceful that it was a huge comfort compared to seeing him in recovery.

The longest day ever turned into the longest week ever as we stayed in the ICU. On Thursday they tried to remove the tube and allow him to breathe on his own, he did good for awhile but then it quickly became apparent it wasn't going to work. This time I was tucked away in the corner and watched the team as they had to re-intubate him. It was terrifying and comforting to be in the room as they did so. So many people making sure he was OK. Staying tied down, hooked to a ventilator wasn't a long term solution so on Sunday they put in his trach. It was about this time that I started this blog. Another week in the ICU and then to a regular room and eventually we were allowed to go home. Life at home with a trach was a tough adjustment. We weren't given the training that they promised and care for his new trach fell squarely on my shoulders. It was terrifying. At his follow up appointment at the end of the month his airway was still about 70-80% blocked.

The longest month ever turned into a long summer as we adapted to his trach and new challenges and trials emerged. We learned and tried to overcome, but things got tougher and harder. Now, here exactly a year later from the "longest day ever." We are sitting at Huntsman with his 3rd infusion of his new DRd medications. Hospitals, blood tests, medications, side effects... it's something we deal on a very regular basis. Our lives have changed and it's hard not to long for the life before, the life we had hoped to have or to be frightened of what lies ahead. Many people in the support groups for myeloma talk about how hard they remember the first year being. We've still got about 5 months before we can put the first year of cancer behind us, but at least we have a different 1 year milestone to celebrate. We are so very grateful to those who have come to our aid and support during this difficult year.

Although life is tough and often overwhelming, it's something I'll gladly do as long as it means I keep my sweetheart by my side. Sitting beside him while he gets chemo, or helping him walk carefully to the car is the place I most want to be. Our love grows each day as does my admiration for him. He's so sweet, so tender, so loving, so thoughtful. He's going through such difficult obstacles and still always is concerned about me. He is my hero. I deeply hope that he'll beat the odds and that we'll have many, many more years together. This isn't a battle we chose, but we'll fight it together.
The lyrics to a Mariah Carey song come to mind....

And then a hero comes along

With the strength to carry on

And you cast your fears aside

And you know you can survive

DRD

Chris posted this picture on Facebook last week and I felt like it was just what we needed for the blog. Life with myeloma is hard and painful things but also many that are simply unpleasant. Compared to everything so far, last week was just a typical week with many unpleasant things and some uncertainties of how things would turn out.

Wednesday last week was a long day of his new treatment. He wore his cookie monster pants, I packed his favorite cookies and some of his favorite milk and together we got up and left our house about 6 AM. It was a long day and we didn't get back until about 7 PM. All things considered the infusion went about like we expected. There was a chance it could turn into an overnight stay, so we came prepared but it ended up not being needed.

After a whole bunch of "pre-meds" to help make things go smoother, they got the Daratumamab infusion started. They put the IV meds in a 1000 ML bag and started the infusion at rate of 50 ML per hour checking his vitals and increasing it each hour if he was doing OK. The first side effect he felt was a spike in his temp, nothing too crazy, and a cool rag worked to help him cool down. Shortly after they bumped it to 100 ML per hour he got a full body rash. It started in a few areas and quickly spread. They stopped the infusion and gave him some more IV Bendryl. Once the rash went away they started the treatment back up at 50 ML per hour. The Bendryl put him to sleep and he was able to get in a good nap. They increased it each hour by 50 ML. The monitored his vital signs on a regular basis and there were no more reactions for the rest. Once he was up to the max of 200 ML per hour things went much faster.

Our nurse Robin was awesome! She was his nurse the first day of collection and always makes us both feel welcome, she even remembers and calls me by my name. There are at least two infusion rooms that I'm aware of at the main Huntsman and we thought we were going to be in the main one however it was in the BMT infusion room. Doing the initial infusion's of Daratumamb is something apparently fairly new to the BMT infusion. Robin was a bit concerned and wondered why our infusion wasn't being done inpatient but everything went fairly smoothly and although we thought we might end up being transferred upstairs he was able to finish it in time to avoid being put in a room.

Chris's family from Washington, Montana and Texas let us know throughout the day that they were thinking of us by sending us pictures wearing their Team Chris shirts.

Once we got home Chris took his new chemo, Revlimid. It's a pill that he takes at home every day for 3 weeks, and then gets a week off to help his body recover. Having chemo around the house is a strange feeling. He's got to be very careful with it, it's not something I'm even supposed to touch. It also has a side effect of blood clots, so he also started a blood thinner. We thought they were going to have to be shots, but were relieved that they decided to do a pill instead that was much cheaper and easier to take. As well we now have another team watching over him, the thrombosis team. Until they figure out his dosing needs, they will be doing regular PT-INR tests every couple days to measure how thick/thin his blood is.

All of the new medications have come with a lot of fatigue. He's still pretty worn out and battling some of the effects from collection and it would have been nice to have the week off like planned, but it just wasn't in the cards. Unfortunately it also has really made him have insomnia. He has had hard time sleeping for while and is often up in the wee hours of the morning. Being exhausted and tired at the same time are two things that really don't go well together. Saturday I convinced him to go back to bed and he slept almost all day. He's felt a bit better since then, but has been again dealing with an itchy rash from the medication (a common side effect). We're both grateful that when he is awake he can often work to help keep his mind off things. There's no way he could work a typical 9-5 job, so we are glad he's able to work some here and there.

Today we are back up at Huntsman for another infusion. Our nurse this week is Amber, another one of our favorites. Instead of a 1000 ML bag, they've mixed the Daratumamab into a 500 ML bag. Starting again at 50 ML and working our way up, so far with no need to pause. He's been able to rest some this morning and the infusion room is oddly quiet. This morning as we walked in, Chris was resting in the lobby from walking in from the car. Dr Sborov happened to be walking by and stopped and came over to check and make sure he was OK. It was just something simple, but made me appreciate even more that we ended up with an amazing doctor at a time when we needed it the most. We're both so grateful and touched by his genuine concern.

Ferrari's

Today as I walked to church the sun was shining, a gentle breeze was blowing and the smell of blossoms in the air was sweet. It was a great balm for my soul. Spring is increasingly becoming my favorite season because of all of the reminders that life can be beautiful even after a difficult, cold harsh winter. I also couldn't help but notice that while some items are in full bloom, and others have already begun to sprout leaves, others were barren still hibernating from winter. It's was about six months ago that we found out about the multiple myeloma. Spring hasn't quite yet come to our journey, but the warmth of the sun and the gentle breeze I'm hopefully it's very close on the horizon.

We met with Dr Sborov again Friday to figure out what the next step is. Chris was originally supposed to have a break from chemo until May but just prior to collection we found that his Lamda Light Chain numbers were high. In October his Lambda light chains were 323 (Normal is .57-2.63). Starting chemo they dropped fairly quickly and were down to 4.67 by December and dropped regularly each subsequent test. They were normal for the first time in February at 2.03. Just prior to collection they were 12.6, and when tested again this week they are at 18.4. So all the plans to start treatment were moved up. Dr Sborov would like to start again as soon as possible, he would have started this week if he could have.

Trying to describe the status of myeloma is tricky. There's approximately 724 trillion blood cells in the average human body, so there's a lot of places for myeloma cells to hide. There's a lot of debate about using the term "remission"" for myeloma. Most myeloma patients, even those who do transplant, are on maintenance chemo to keep the myeloma at bay. Compared to most other cancer patients when in "remission" are not currently being treated. One term is "Complete Response" which I interpret to mean that the drugs are doing their job. I've learned that when they decided to do collection Chris was in SCR (stringent complete response) meaning that according to his blood tests and bone marrow biopsies things were in normal range. The meyloma was behaving so they used the opportunity to collect. Because his numbers are climbing he has "relapsed". Since he hasn't been doing chemo it's to be expected but they had hoped it wouldn't come back quick so quick.

When Chris was originally diagnosed, because of his kidney failure their options for treatment were limited. Now that his kidney's have improved he's eligible for the "Ferrari" of treatments. While Dr Sborov meant it in terms of the quality, it's hard not to be staggered at the cost two of his medications are each both likely 6 digit figures in terms of cost per year.

Years ago I remember standing in line picking up a prescription in St. George. The person in front of me was picking up one that was about $250 and trying to figure out how to pay for it. I was shocked and wondered what the costly medication could possibly be. I remember then picking up mine and being grateful that it was only about $10.

Over the years we've been shocked at the prices of medication. $600, $900, $1000, $1100, $3000...Several times it was common to hear the timid pharmacists carefully ask "You know this is expensive right?". We are very fortunate to have insurance that covers a large portion of the cost. Especially since his chemo usually has a 5 digit price each treatment. However one bit of knowledge that I can highly recommend to anyone is that if you get a prescription that's very expensive is to see if the company has an assistance program that can help bring your co-pay costs down to a reasonable amount. Not sure what would be covered by insurance and what we would have to pay, I looked into this as soon as I got home to get signed up for anything available.

Next week he'll have his first treatment of DRd

daratumumab (Darzalex®)

revlimid (lenalidomide)

dexamethasone (Decadron®)

His previous treatment was all done once a week on the same day (an infusion, a shot and pills). DRd will be different. It is a weekly infusion (Daratummab), Revlimid (daily pills) and dex (weekly pills).

Daratumamab is a monoclonal antibody. It targets the CD38 protein that is highly expressed on myeloma cells and attacks and kills them or allows the body to kill them. The way I picture it is like a military operation and we are sending in reinforcements. The body doesn't know that's what they are, so for the first couple infusions most people experience a reaction and in varying severity. When a reaction happens, they will stop the infusion, treat the reaction, and then when safe to do so start the infusion again at a slower rate. Because of this the infusion can take a long time, usually about 10 hours. After the first couple infusions, the body seems to realize that we're sending reinforcements and instead of causing a reaction they become allies and fight the myeloma. He will do these infusions weekly for a while, eventually going to bi-weekly and then eventually monthly.

Revlimid is an oral medication that will likely be taken for 21 days followed by a week off. Revlimid is an IMiD (Immunomodulatory drugs). This Immunotherapy treats the disease by inducing, enhancing, or suppressing an immune response. It can cause low blood counts, fatigue and blood clots. They will monitor his blood counts carefully and because of a family history of blood clots he will also be on a blood thinner. It's a powerful drug which required several pages of consent, and regular phone calls with the company to make sure he's taking it correctly.

Dexamethasone is a corticosteroid that is very common and included in most myeloma treatments. It is used at almost all stages and sometimes even alone when nothing else works. It can help with inflammation, help decrease nausea, and at high enough doses can even kill myeloma. It can also help make other myeloma drugs work better.

Anyways, enough of the technical and informative. The next couple weeks are likely to be tough, but we've been through many tough weeks and survived. This new treatment will hopefully provide relief from some of the difficult side effects and improve the quality of life for both of us. The first treatment CyBorD served it's purpose and was able to get the myeloma under control and save his kidney's. That is no small achievement!

After the first couple weeks things will gradually get better and getting down to only one infusion a month instead of one a week will be amazing. The past six months we've had little time or energy to do anything else. It will take time, and these new medications will surely have it's own side effects to deal with but I'm hopeful there's a chance to to reclaim a part of ourselves and have time to make some happy memories. Treatment, in one form or another, are likely a permanent part of our life but with a few windows of opportunity opening it hopefully won't be all encompassing.

Milestones

The past week and a half of collection were exhausting and we are both so glad to have that milestone marked off the list. We haven't had time to celebrate yet and instead have just been trying to recover. However this is a huge and potentially life preserving milestone! With so many new treatments on the near horizon we hope that one of them can bring the cure for myeloma and that it will come during his lifetime. However transplant is the best treatment to give him the longest life expectancy to wait for this cure, so collection was a very critical step. It was very long days for me, however I'm so glad I could be there with him to support him because as exhausting it was, it was so much more difficult for Chris.

The process was very interesting and even though we tried to learn what to expect ahead of time, there were side effects we didn't know to expect. We were prepared for 1-2 shots per day, however in total he received 32 shots, not a fun surprise. As well, Tylenol and Claritin only took the edge off the pain. We also did not know that it would cause fluid shifts and retention. We've been trying so hard to get the extra fluid off, but are back again at square one.

Dr Sborov's goal for collection was 10 million, and Chris exceeded the goal and was able to collect 11.5 million. Yay for reaching this goal! The minimum that they need for a transplant is 2, but closer to 5 is ideal. So depending on what they choose, he has at least for 2 transplants. Multiple transplants are pretty common, and sometimes they even do them one right after the other (called Tandem).

During collection, we had three different tech's overseeing the process and running the machine. These techs are the ones who also work in the lab processing, counting and prepping the cells for their time in the freezer. They are also the ones who are responsible for thawing them and helping with transplant so perhaps we will see them again. They were great at answering questions and we learned a lot, or at least had a lot explained to us that we tried to absorb. Much of the details go above our head, but they explained that they use the marker CD38 to count the stem cells. I had researched about the new medication they want to start him on that had mentioned CD38. Daratumamab (Darzalex), is a immunotheraphy drug. It helps the body's immune system to find and destroy the cancer cells by binding to CD38.

If you haven't gathered it already, myeloma is complicated!

Because of collection, the meeting that we've been anxiously awaiting with the cardiologist, Dr Ryan, that was scheduled for the week of collection was moved to the week before. His father has heart disease and has been in and out of the hospital for the past six months so hearing that there may be problems with Chris's heart has had a very worried for the past couple months. The appointment was a bit anti-climatic but we came away with some assurances and clarification.

Pulmonary Hypertension is high blood pressure in the arteries to his lungs. All of the respiratory issues we have been dealing with (the tracheal stenosis and trach) have been difficult for his heart. However, the condition will likely not have any impact on his life expectancy. It is both good and safe for him to exercise.
Dr Ryan does not feel that it is a barrier to receiving a stem cell transplant.
The swelling in his legs that we have been battling is a symptom/side effect.

One aspect of our marriage that I've always loved is how much we enjoy talking to each other. He's someone who I can talk to about anything and we never run out of things to talk about.
Before his most recent challenges, he would often take me to and pick me up from work. I work only a few miles away, but it was nice to have this time in the morning and at night to look forward to. He hasn't been yet been able to do resume doing this, but with all of his appointments we have a lot of time to talk while driving and waiting. I'm so glad he proved the doctors wrong when they said he likely wouldn't speak again! Among other things, we've talked quite a bit about a bucket list. Even before the cancer diagnosis we would toss out ideas, but with a bucket that developed holes and is leaking out precious moments we are trying to figure out how to find the balance to accomplish some of the things that we've always wanted to.

We'd love to hear some inspiration,

what's on your bucket list?

Collection

Today started very early, driving to Huntsman while the moon was still up and the sky was still dark. Often while making the drive my thoughts wander and I try to focus on being grateful instead on on some of the other things. Today in the dark with Chris silently sleeping beside me I turned to where we were headed. I'm amazed at how lucky we are to have a top notch cancer center, that just so happens to specialize in his rare cancer nearby. Being treated by a myeloma specialist is important in his key to his survival. While the drive is often filled with traffic and usually takes an hour, it's a blessing that most don't have. Today we learned that the older man in the bay next to us had to come all the way from Oregon. With all of our appointments so far this year, we've driven about 1,000 miles, I can't fathom the logistics of trying to coordinate everything even if we still lived in St. George. Being able to sleep at home, and just visit the doctors in the hospital is a blessing. Collection was delayed from the original plan of February but we grateful that he's being able to do the process as it's an important one in his treatment.

Today marks the first potential day of actually collecting. We've driven here several days already to receive Nupogen shots to tell his body to over produce stem cells so that we can collect them. We weren't sure how quickly the shots would kick in, but shortly after getting them the bone pain kicked in. Strangely Claritin can help, so he's been taking that and Tylenol to try and keep the edge away. They only take the edge off, I'm so grateful that I'm able to be with him as sometimes the simple act of human touch is the greatest for pain relief. The pain tends to come in waves sometimes in his hips, sometimes his shoulders or his legs or arms. Often in multiple places at once. He's described the pain a few ways.... like his bones trying to get out of his body, like someone is taking a chisel and hammer to his bones and also like a vice grip on his bones. The pain ebbs and flows in each area and he's been a champion and handled it pretty well. I'm touched with his thoughtfulness as each day he's thanked me for being with him and for being patient with him. He's going through a lot, yet he still things daily of how it is for me.

Yesterday in addition to the Nupogen shots, he also had a line placed for the collection. This one is very similar to the line he had for dialysis but with an additional catheter. It usually sticks up out of the patients neck but we were able to request that they tunneled it down through his skin instead.

Yesterday was an unusual day at Huntsman. While in the waiting room waiting to be taken back to IR we were both surprised to see two young little toddlers. Being treated at a cancer treatment is strange because unlike a regular hospital, you know that everyone there is either being treated for or is there to support someone with cancer. We usually feel so out of place with so many around us the age of our parent's or grandparents. Having a toddler walk by and say "bye-bye" and wave sweetly brought a smile to both our faces.

As well, after they wheeled Chris back and I was sitting waiting for him to come back they wheeled another patient into the curtain next door. His voice sounded very young and I could tell he was alone, it made my heart ache and I nearly peaked around the curtain to introduce myself. About that time a visitor stopped by and I learned that his indeed was very young, likely about 19. He had just until recently been serving an LDS mission in California. He, like us, was grateful to be in good hands with his diagnosis.

Most people don't collect on their first available collection day, but the preliminary numbers testing for the number of cells in his blood stream looked good so instead of having to wait 3 1/2 hours for the blood tests to come back, they were able to get him started a little bit early. Chris has been very optimistic that this will go smoothly so being able to collect some today was a win in our book

They usually process 15 liters of blood in a session of apheresis and the speed that they do so can vary the time that it takes. Today's session was about 3 hours. They collected about 175mL of stem cells and 200 mL of plasma.

As well, there is approx 250 mL of blood in the tubing, but at the end of the process they put most of it back in, usually returning about 230mL.

To prevent his blood from clotting in the machine and tubing, they add an anti-coagulant as part of the process. This anti-coagulant binds to calcium which can cause his calcium levels to drop which can cause tingling in your lips and extremities. Because his calcium was low before even starting this morning they started a calcium drip shortly after they got him all hooked up. Because it can mess with your other electrolytes (potassium, sodium, etc) they run additional labs to make sure he's OK to go home. More waiting for those to come back, but they all turned out good and he was given the OK to leave. About 9 hours after we left this morning we arrived back home and both took a nap.

The tech today said it's really hard to estimate but that his best guess would be about 1.2 million. We're now getting ready to head back up to the hospital for a new nightly shot. This shot, called mozobil, tells the stem cells to "get out" of the bone marrow and into the blood where they can collect it. This also is pretty common and something we expected. He will continue to get the Nupogen shots in the morning as well.

While hanging out in a hospital hooked to a machine isn't fun, and brings back memories of doing dialysis, we know this is a good thing and a step in the right direction. We also are touched by the support and thoughtfulness of others. Our friend Rachel stopped by for a visit, wearing her Team Chris shirt. We're getting to know all of the nurses, techs and support staff but it's always nice to see a friendly face and reminisce about her recent trip to Hawaii. Also, we returned home to a delivery of groceries on our porch from Smith's. Our good friends from St. George had promised Chris a Dr Pepper and had Smith's deliver a case along with a whole bunch of other goodies and essentials. I had started a small list of what I knew we needed and planned to try and go to the grocery store sometime this week but they saved us. While I'm sure there are several who would have picked up groceries for us if we had just asked, we weren't quite sure what this week would be like so having it just show up when it was needed to me was a tender mercy and someone following a prompting. So lucky to have such good friends!

Off we head to Huntsman again, but at least we get to return home again tonight to sleep in our own bed!

Sunshine!

The weather outside is transitioning from winter to spring and for that I'm so very grateful. I love the blue skies, the spring rain, the feeling of sun on my face and the spring flowers coming up through the dirt after a long winter as life begins again. Today as I was out in our backyard I looked over to see "popcorn" on our little apricot tree and interrupted the pair of ducks courting in our front yard. I love the smell of flowers and the uniqueness that each flower brings. Spring is a wonderful season of transitioning.

Our lives are also changing and hopefully providing new life. Because most people proceed directly from collection to transplant, we were a bit nervous that insurance would decline collection only, but we heard this week that they have approved collection and things are moving forward. Collection will start late next week.

We're still learning about collection and will understand more after our consent appointment next week. I thought however I'd try to share a bit about what it is. There are two types of transplant, autologous (from Chris) and allogeneic (from a donor, usually a sibling). In order to do to transplant they must first harvest stem cells. Stem cells are the basic building block of many cells in the human body. The collect these "baby" cells, then during transplant us a high dose of chemo that kills everything. Shortly after they reintroduce these stem cells into his system in hopes that these new cells will develop correctly.

There are two overlapping parts to collection. It starts with daily shots that will cause his body to overproduce stem cells, which can often cause bone pain as they kick into overdrive producing stem cells. As described above stem cells then develop into other types of cells. In the case of blood cells they will become red blood cells, white blood cells, and platelets. Luckily stem cells are found in the blood as well as the bone marrow, and they will be collecting them from his blood.

In a process very similar to dialysis (and likely plasma donation) called aspheresis they will temporarily remove blood from his body and filter out the stem cells and then return the blood. The cells will then be taken to a lab, processed and then stored until transplant. Most people tolerate it pretty well and there are usually very few complications.

So as we celebrate Easter this Sunday we are very grateful for the opportunity to be soon undergoing collection. A break from chemo has been a wonderful blessing. It has allowed Chris to continue to regain some of his strength. He's had a bit more energy, and is in great spirits. We both are still reveling in sleeping in bed, and also enjoying the luxury of a safe and relaxing shower. We've enjoyed going out a couple times together for errands other than doctors appointments and driving around with the sun roof open. May all of you enjoy this weekend and the coming spring weather.

He is Listening

The past couple weeks have given a reprieve from the endless appointments and procedures with the main item on the agenda each week being chemo. Being able to meet Jonah and catch up with Carmen and Jim is something that we've looked forward to. Life is so very unpredictable from week to week that planning anything besides medical appointments is tricky but we enjoyed the time that we were able to spend together.

Today we met with Dr Sborov for the beginning of cycle #6. He explained the results of the bone marrow biopsy from the March 1st and it was.... good news! The chemo has worked very well and he's doing well enough that instead of another cycle of chemo that they canceled his chemo for today (and the next few weeks). Instead (pending insurance approval) we are doing collection in about 2 1/2 weeks. Until then he won't be doing chemo. Actual transplant is still on hold and possibly won't happen until next year, but we are OK with that. Aside from the one week off we got the week of Valentines, he hasn't had a week without chemo since he started in October.

After collection he will likely start a new chemo. Bortezomib which is likely the biggest offender for his neuropathy will be discontinued, so hopefully his numbness, pain and tingling will get better. Instead of CyBorD (Cyclophosphamide, bortezomib and dexamethasone) he will likely do DRd. His drugs go by different names so it also has several aliases it can also be called DLd, Dara-Rev-dex, Dara-Len-dex.

daratumumab (Darzalex®)

revlimid (lenalidomide)

dexamethasone (Decadron®)

The best news about the new chemo is that depending on how he responds his infusions could gradually be dropped to bi-weekly and eventually monthly. I can't even put into words how glorious that sounds.

Compared to the news we got today this seems to pale in comparison but we've reached also an amazing significant event. For the first time in about a year and a half we've been able to return to sleeping in bed. When Chris started to have problems breathing in the fall of 2016 we moved to sleeping on the couch. I could have stayed in bed, but being together helped us sleep the best we could in the circumstances. When my Grandpa got him an amazing recliner Chris started sleeping there, and I was able to claim the couch for myself. We're fortunate that our couch is fairly comfortable but still nothing quite compares to a real bed. Luckily he's been able to build strength and his new trach has made sleeping back in bed a reality. Sleeping in a real bed and being able to cuddle up next to your sweetheart is incredible. It does however come with one drawback, getting out of bed and facing the day! I treasure the days I get to sleep in.

The slower pace has been great to allow us to recharge and recoup. It's also provided time to reflect, which is in many ways overwhelming. All that we've been through and all the medical challenges we've dealt with in the past few years have been unrelenting. Last year I think we were so busy surviving that we haven't had time to really process much. I cried very little during those many days in the hospital, but looking back tears instantly come to my eyes. Several people have told me recently that I'm strong. I know they mean it as a compliment, and I should take it that way, but it reminds me that just below the surface most days I feel like a fragile porcelain figurine. As I've been searching for bamboo items to carry over the theme from our bedroom into our new bathroom I came across this quote. "The bamboo that bends is stronger than the oak that resists". We both have really tried to just take things one day at at time and go with the flow. I'll have to remember being bendable is different and that I am strong, like bamboo! Today's appointment was a perfect example. We went in expecting it to just be a typical appointment only to take a 180 degree turn and go in a different, but good direction.

As someone who likes to be prepared, not being able to plan anything much in the future is a challenge. In pondering the difficulties of the past I want to do what I can to make the future easier. I think one of the most difficult challenges of his myeloma diagnosis is that the future is terrifying. I try to focus on living in the present, but it's not an easy task and it's the prime reason why tears are always just below the surface. Very few people know how long they will live, or when they will lose a loved one. I don't know this either but I do know that there's many difficult days in our future, transplant being one of them. In a caregiver support group I'm in people so frequently post about a loved one who is now on hospice or who has lost their battle that it's hard not to be constantly reminded that myeloma is not curable. We hope and pray that he will beat the odds, or that the new treatments on the horizon will drastically increase his life expectancy but we know the odds aren't in our favor. However now while he's feeling better we are talking about plans for his funeral. It's not easy to do but it will be a lot easier now than whenever in the future when it might be needed.

At church recently the closing hymn made me cry. At the time I couldn't understand why the tears, but in rereading the lyrics again later they again touched my heart. The pioneer's weren't able to stop when things got hard, and neither can we...

Then work and watch and fight and pray

With all your might and zeal.

Push ev’ry worthy work along;

Put your shoulder to the wheel.

Put your shoulder to the wheel; push along,

Do your duty with a heart full of song,

We all have work; let no one shirk.

Put your shoulder to the wheel.

With the good news today a "heart full of song" seems a bit easier tonight than it was this morning. Even though collection isn't a walk in the park, it's a relief to be storing his stem cells for the future. Having things be easier for a little while will make it easier to fight will all our might and zeal. So we'll put our shoulder to the wheel and keep pushing. We're developing the strength with need for the challenges ahead. We're being given the opportunity to gain strength that likely will be needed.

When looking to pioneer's who have overcome difficult trials I need look no further than my mother. In 2010 she suffered a stroke that drastically changed her life. It took away from her all of the things that she enjoyed doing and made life incredibly difficult. Even though basic things like reading, writing and even driving are now difficult she has taken then time to send me several encouraging notes. It is always such a nice surprise to check the mail and instead of bills, ads or junk mail to find an envelope with my name on it written with love. She, like many of you, prays daily for us to have "strength to handle the challenges". This week she mailed a small package with the reminder to celebrate my worth. I know it wasn't easy for her to mail the package, and I know she knows hard hard it is to face and overcome very difficult challenges.

The first blog I wrote about the diagnosis of multiple myeloma was called "Close Around Me" and as part of it I quoted the song "A Child's Prayer". Here is part of the the second verse, applicable to today as I feel like we are soon to be entering the second chapter.

Pray, he is there;

Speak, he is list’ning.

You are his child;

His love now surrounds you.

He hears your prayer;

He loves the children.

Thank-you for all of the prayers, thoughts and concern on our behalf, it is because of them that we've been able to make it this far. As you say a prayer, please express gratitude for our wonderful news today and for continued strength. May hopefully this coming chapter be easier and have time to be filled with happy memories.

Humbling Experiences

Just under two years ago, my sweet niece and her husband showed up at my door and asked to name her son after me. It was one of the most humbling moments of my life. This past weekend I finally got to meet him. Say hi to my great nephew, Jonah Christopher! Such a cool little dude. He is almost 18 months and is so smart, he even does a tiny bit of sign language. Such a cool little dude!

Another humbling moment has been having my brother come down, for almost two weeks, and work himself ragged to give me a safe shower. Throughout the whole process, all I wanted was for it to be safe, so let me explain a little. There is a nasty side effect of the chemo I am on, that gives my feet and hands neuropathy. Basically, they are numb, or feel like they are getting numb or in a state of pins and needles. It makes it hard to walk, as you cannot feel the ground. It is even worse with shoes on. If you have seen me walk recently, and saw how funky it is, it is because of the neuropathy. The best way to experience it, I think, is if you duct taped blocks of wood to the bottom of your feet and tried walking around. It is why I have an awesome cane, for the balance. Anyways, because of it, walking is frustrating, but steps up or down can be hazardous. Even one step. Previously, the shower we had, had a 4 or 5 inch lip you had to step over, and if you add water and numb feet, well, it is a recipe for disaster. Enter my brother. He listened to what we needed, added his expertise, and went to work. What we have is an amazing walk in shower that is comfortable and safe. Oh yeah, and he added heated floors and then extended them to the bench. Yeah. It is that awesome.

Recently, I had another bone marrow biopsy. This time the went into my femur. I can happily report that no drill bits were broken. However, to date, it was the single most painful moment of my life. The humbling part though, was the doctors and nurses in the room were amazed that even though they knew I was in so much pain, I could remain completely still. At the time, I thought it was best not to move thinking it could be disastrous! I still feel pain in the bone, once in a while, but I am using it as a reminder that this battle is far from over, and if I can survive a little drill in the bone, I pretty much can survive anything.

And finally, my bride. Michelle humbles me as I observe her. She recently had a conversation where someone told her she was so strong. She declared, "I have to be!". Of everyone I have seen or met on this journey, I know that it is the hardest for her to go on this ride with me. The thing is, she IS strong. In every way. Physically, she has kept me from falling numerous times! I am no small man at all, and when I need her, she is rock steady, every time. I have pushed away nurses twice her size, because they just aren't as reliable. Mentally, she has run a house, a store, appointments, finances, and does it all with a smiling face. Spiritually, she shows me every day that her faith can move mountains. She has never wavered, and never lets me waver too long.

I have my weak moments, but I see her and if Michelle can handle what she does, then I can handle Multiple Myeloma.

In Like a Lion, Out like a Lamb

I didn't get around to writing a blog last week because we were in the midst of the bathroom remodel. We are so grateful that his brother was able to come and was willing to share with us his skills and his time. The bathroom turned about amazing! It's hard to explain how much of a difference that having a shower where he feels safe will make. It is a huge blessing, that has already added some peace of mind and relaxation to his life. His sacrifice and hard work on our behalf is something we will think of every time we take a shower. I've still got to finish painting and add all the finishing details, so you'll have to wait for a full before and after picture but here's a picture of Fred's amazing work.

Aside from chemo, the main thing that has been on our appointment list was the bone marrow biopsy on March 1st. They did it up high up on his femur and were able to get the samples that they wanted. There isn't anything that they can do do to numb bone and Chris said it was the most pain he's ever felt, but they were astonished at how despite the pain Chris was able to stay still. His last one was on Halloween, but he'll likely have to have one every three months.
The results have come back in we're waiting to hear from Dr Sborov the interpretation. There are many things that they use to monitor his myeloma and many of them we do not understand, this is one of them. The bone marrow biopsy has a few tests, one of them is called a FISH panel (fluorescent in situ hybridization). "FISH can be used to look for specific changes in chromosomes. It's very accurate and because cells don't have to grow in a dish first, results are often available within a few days". (To read more about Myeloma Testing Visit Cancer.org)

Here are a few of the things that come back on his FISH results:

1q21 (CKS1B)
9q34 (ASS1)
11s13 (CCND1)
14q32 (IGH)
15q24 (PML)
17p13 (TP53)

Another test is called Immunophenotyping and gives us results involving these and many more:
%CD28
%CD200
%CD46
%CD45
%CD19
%CD20
% Cytoplasmic Kappa
% Cytoplasmic Lambda

They say that being treated by a myeloma expert can make a very big difference in the life expectancy of someone with myeloma, now you can understand why.

It was nice with everything going on the past two weeks for me to also have visitors. My parents were kind enough to come by and bring some tools that Fred needed. I also enjoyed breakfast with my Aunt Shari the day of his biopsy. It was something that we did before his diagnosis and it was so nice to have some "me" time. My brother, sister-in-law and niece also stopped by for a short visit. They had been sick, so didn't come in to visit Chris and it was wonderful that they were sensitive to the fact that Chris's immune system is weakened (and pretty much always will be) and didn't want to risk getting him sick.

March also is Myeloma Awareness month. It is represented by a burgundy colored ribbon.
In 2017 there were approx. 30,280 people in the US diagnosed and approx 12,590 lost their battle. In comparison Breast Cancer which had approx had 252,710 cases and 40,610 deaths. (Cancer.gov)

A year ago I don't recall ever hearing of multiple myeloma, now it has consumed our life. It's a roller coaster full of emotions and while I strive to remain in control those emotions, I am always but one thought away from tears. Our hopes and dreams for the future are simply that we have one together and that somehow Chris can beat the odds. It's hard not to think of the many difficult things that may lay ahead of us, it's a terrifying road. They often say to take things one week, one day, one hour, one moment at time whatever you must to make it through. Myeloma is unpredictable and for me, someone who likes to be prepared, it's hard not to be able to plan, but part of being brave is doing what we must in the face of trials to survive. It's letting go of the things we wish we could do and embracing what we can. Yesterday Chris was feeling well enough to be able to run errands with me and enjoy some beautiful spring weather. I treasure our time together. Despite all of his battles he inspires me everyday and makes me feel so loved.

Hoops or Rings

Right now we are in a hoop jumping pattern. Making sure that we have pre-approval for the transplant is vital since the average transplant can cost around $500,000. The insurance company, and us as well, want it to be successful so the hoop jumping is an important part of the process. The recent development of problems with his heart has delayed things, so while we wait on that we are working on some others. One hoop is to make sure that are no dental procedures needed. Myeloma can cause problems with your teeth, so we feel pretty fortunate that his dental check up this week didn't reveal a long list of dental problems. Just a few that we hope to take care of in the next month or so. Also on the schedule for this week is the the bone marrow biopsy. This time they want to try in his femur. When they told us that Dr Hardman, who performed the one in his sternum, would be available to do this one that put our minds at ease because Chris was really impressed with him last time.

In some ways the delay in the transplant is a blessing because it gives time for Chris to build strength and for us both to prepare in other ways. However having a timeline with a goal of transplant in May gave us a definitive goal to prepare for, and not knowing when a transplant might happen brings with to the forefront the ever present feeling of uncertainty for the future. We were hoping to proceed with collection, but even that is on hold for the time being.

The past few weeks I've been practicing another skill very similar to making a mummy. Excess fluid has been building up in his legs. It was probably held at bay by the fact during dialysis they would usually pull off about 3-4 liters each session. Without dialysis the swelling escalated quickly. Using compression socks and short stretch bandages I wrap him up. The tissue in his legs is finally starting to return to a normal color. Gravity however works against us and so it's a constant battle to try and keep him wrapped.

We are also extremely grateful to be making progress on another front. This week his brother Fred came to help us redo the bathroom. It's something we've contemplated doing since May. Our stand up shower is challenging with a trach. Since there was a possibility that the trach was (and possibly still is) not permanent we were making it work. However with the neuropathy (numbness) the step into the shower became an additional challenge. What is usually a relaxing experience became the opposite, filled with anxiety and worry over what could go wrong and of being hurt. With our master bedroom being on the main floor of a house with no basement, making a walk in shower with no step is challenge. However Fred has come up with a way to do it. Things are coming along quickly and having a shower where he can sit and relax and feel safe is soon going to be a reality. It will be wonderful feeling for both of us to know that he can be safe.

Something that I haven't mentioned much is his eye. At the end of last summer Chris's right eye quit moving to the right and eventually up and down. It was this that led us into the ICU to change his trach and the kidney failure was discovered and then the myeloma diagnosis. With so much else going, the issues with his eye got pushed to a back burner. He's learned to adapt to the wonky vision and the accompanying headaches. About a month ago in a doctors appointment I noticed that his eye had improved and was moving, not just up and down but even to the right. It has continued to improve and although not 100% better, the double vision is much improved. Whether a complication from the extremely high blood pressure from the kidney failure, or a weird side effect of the myeloma we are so glad that this is something that has improved.

We both have really been enjoying the olympics, so it's fitting to include it with our blog this week. It's wonderful to have something exciting to watch late a night when we can't sleep and hearing the stories of what the athletes did to get there is inspiring. Staying up late at night to watch the women's USA hockey team win the gold (not normally a sport we follow) was exhilarating. Perhaps we should also focus on a lesson to be learned. Just like the olympics, the journey to the finish line is not a quick or easy. There's a lot of blood, sweat, tears and pain in the process. As well, there's a lot of unseen people in the background praying for and cheering on the athlete and hoping for a gold medal finish.