Aside from the few months following multiple myeloma diagnosis, the past few weeks have easily been some of the most difficult that we have faced. Many tears have been shed and we've both felt pushed to the brink of exhaustion.
This week luckily has been a little easier. Chris finished up his 96+ hours of chemo on Sunday night and we could have come home, but there wasn't anyone around to be able to make that happen. He pushed to make it happen on Monday morning and we got home that afternoon. Sleeping in your own bed (not being awoken numerous times throughout the night) is a powerful healing tool.
We went back to "the mothership" on Wednesday for more chemo. Because this chemo attacks all fast growing cells, which include good and bad cells they are watching his red and white blood cells. They were surprised that they hadn't "bottomed out" already and anticipate that it will happen soon. He may need blood or platelets and he's already been given separate shots of neupogen to encourage white blood cells. They want to monitor him carefully, which we appreciate, but to them that means there at the clinic and not at the satellite location in South Jordan. He was exhausted from the trip up that day, so we pushed back and were able to arrange for the next visit and several of his daily visits this coming week to be in South Jordan.
I recently posted about spring flowers on Facebook and asked everyone what their favorite flower or season was. It was so fun to read everyone's comments. My aunt commented "I love them all as the variety of each flower makes the other flowers more beautiful." The same can be said of friends and family, each one unique but bringing their own beauty to the lives of those around them.
We are so grateful to all of those who have helped to lighten our load these past few weeks. It is often the text's, cards and thoughtful gestures that brings joy and gratitude. We are very blessed to have friends and family reaching out helping to lighten our load and let us know we aren't alone.
Another thing to be grateful for... we know it's working. The egg size mass on his upper abdomen which we named his "turkey timer" has slowly been melting. It's now harder to find, flatter and likely about the size of a small almond. We are confident that his next PET scan, sometime in the next couple weeks, will show that the others have also shrunk.
We have determined that there is a time warp at the hospital. Where when you enter, time has weird tendencies to go fast, slow and everything in between, but mostly slow. Where a day can feel like a week, and sometimes an hour feel like just a moment. Where you have to think really hard to try and remember what day of the week it is. The world on the outside is proceeding as normal and you're in a weird version of the movie Groundhog's day. We have talked with several of his providers and they agree that it affects them the same way when coming to work.
Here we are on Friday evening, together at Huntsman. One of our worries when we knew Chris was going to be admitted was if I would be able to be with him and for how long. We haven't had to be apart during his inpatient stays and we knew that restrictions were still in place. We were so relieved and grateful when we found out that I'm able to be here with him, day and night . I know that it provides Chris a significant amount of peace and comfort to have me here. It relieves so many worries for both of us. It's also so helpful for me to be able to know what's going on and stay caught up with and on top of the medications that he is taking. It's also nice that I am able to bring a few things from home to make the stay more comfortable and provide relief to Chris in ways that otherwise would go overlooked. Depending on how the next two days go, we are hoping to be back home sleeping in our own bed early next week.
There are three parts, but five drugs in this chemo. Three of the drugs are mixed together in one bag. It is a constant 24 hour IV. He is nearly done with the second bag with two left to go. His team did a lot of researching to make sure that they were as safe as possible. His kidney's have been damaged by the myeloma so they have adjusted accordingly. They are watching his levels like crazy and adjusting and adding fluids and other medications. They test things all the time. We are in the BMT section of the hospital. One huge blessing about being on this floor is that his nurse is able to draw labs from his port. During other stays even though he had an IV line they would still have other people draw labs requiring multiple blood draws and needle sticks.
There's still much to learn about what to expect with this chemo. We know it can cause nausea, fatigue, and other side effects, but they have been great so far to try and prevent what they can. The fatigue is starting to settle in, but Chris so far is in good spirits. The affects will continue for the rest of the cycle and we know there is more that we will learn once he is discharged. I'm sure we will be back regularly for more testing and medications. His blood counts, such as white blood cells will likely really take a hit and he'll be super immune compromised. He also may need blood transfusions.
So far we're both doing good and are hanging in there. It may be just the two of us here at the hospital, but we know that we aren't alone and we sincerely thank those who have helped to lighten our load. Thank-you to those who have sent messages, left voicemails, dropped by cards, sent gifts or money to help lighten our load. We sincerely appreciate the prayers and well wishes, they really do make a difference.
His fragile immune system means we must be extremely careful. Our efforts to be safe from covid have been good practice and we will be secluding yet a while longer. We miss seeing everyone, but visits will have to be digital for the foreseeable future. How blessed are we to live in a world where technology makes this so much easier.
As you may know, in October Chris had a PET scan where they discovered several masses in his lower abdomen. Since this was the first time he was able to get a PET we didn't know if they were old or new but they were concerning and a sign that DRd wasn't working. Dr Sborov decided we should change chemo to EPd and we just finished the 4th cycle.
In December we noticed a large bump on Chris's abdomen. It had been accompanied by a sharp cramp so we thought was likely muscle related. It wasn't discolored or painful and felt like it fit about the palm of my hand. We watched it, it stayed pretty much the same in size. His blood markers have continued to be high but not crazy high and we held out hope that the surprise double dose the week of Christmas would knock things into line. We had the PET originally scheduled for earlier in January but when there were some issues with the financial assistance, we asked them to reschedule in hopes we could work through some of the issues. The reschedule wasn't until the end of February and the waiting was making us nervous. Somewhere along the line we noticed a similar bump on his upper thigh which seemed likely to be a lymph node and pleaded for them to push it up. It was moved to this past Thursday.
The experience in October wasn't the best, so we were both relieved to see the friendly nurse, she recognized us. She was amazing to work with, very kind, patient and gentle. He sat alone in the room for an hour with the radioactive sugar flowing through his veins. Don't think or use your brain they say... haha, that's not an easy feat.
The results came in quickly and it didn't take much deciphering for us to know that things weren't good. The masses that were identified in October have grown. The one on his upper abdomen is approx. 4.7x3.7cm and upper thigh/groin 7.6x4.6. There are also additional new ones we weren't aware of as well, some that may be on or near his pancreas and down his right leg. In addition to size they measure this by the amount of uptake of the tracer called SUV (Standard Uptake Value) They are also more active. The original ones when from 7.1 to 16.9. The one on his upper left thigh is 22. The ones in his right thigh/pancreas is 26.4.
His doctor confirmed our suspicions yesterday . It has turned into a rare aggressive form of called extramedullary myeloma (sometimes known as EMD - Extra Medullary Disease). Typical myeloma forms lesions in the bones which weaken the bones. This myeloma is able to exist outside of the bones which makes it difficult to treat. It's not very common and there aren't a lot of studies or treatments specifically for it. Dr Sborov mentioned it's taking on characteristics of lymphoma, which sounds terrifying and complicated. Myeloma is a cancer of plasma cells, while lymphoma is a cancer of lymphocytes. Both plasma cells and lymphocytes are types of white blood cell. Again, we are so very grateful to have a myeloma specialist who knows what that means.
With it being aggressive, we must be aggressive. They quickly got the ball rolling to start a new chemo right away. The plan is for a 5 drug combo called K-DCEP. I solved the mystery of the wacky acronym from the video... drugs always have two names a generic and a brand name. Since keeping track and trying to learn how to pronounce one is always so easy.
It comes with significant risk and it's unknown how Chris will tolerate it. Some people handle it better than others. It can damage your heart, so we go on Monday for testing on his heart, labs to establish a starting point and a Covid test. It can also be difficult on your kidney's. We are super grateful that with the most recent treatment it's really helped his kidneys. In fact, one time his creatinine was in normal range for the first time since diagnosis. Having the weekend to process has been helpful but we are looking forward to knowing more on Monday. If insurance will approve it, it likely will be several days in the hospital.
Dr Sborov mentioned that depending on the results of the first cycle, radiation is a possibility as is the Bone Marrow Transplant.
Yesterday was tough and we both cried off an on throughout the day. My mind was chaotically trying to think of all the things I could/should do to be prepared as well as trying to learn what I could about his treatment and prognosis. I put together the video above that I posted to Facebook (isn't that song perfect... it's called Lion by Saint Mesa). I repacked our hospital bags, packed a smaller cooler full of food, ordered groceries, did laundry, cleaned the house, and tried to make arrangements to be semi-away at work. Today we are running errands and went out to to enjoy the beautifully sunny day. Chris is in good spirits and feeling that the timing is right and things will be ok. His optimistic and peaceful attitude is helping calm my nerves.
Finally, several people have asked how they can help. In the video I mentioned emotional support like cards, texts, messages etc. Others have asked if we need financial help. Money or gift cards to help with gas, food, or medical bills would definitely help alleviate stress. We typically do most of our grocery shopping and get gas at Smith's. Our names have been added to the temple prayer roll and we have arranged for a good friend to come give Chris a blessing tomorrow. Prayers have also been a huge lifeline for us, praying specifically for Dr. Sborov to be able to guide us to the right decisions would be one request.
