We made it! As we anticipated, the last two months weeks were challenging. The new chemo is easier to tolerate, but still comes with side effects and infusion for nine straight weeks was tough. As well, I wasn't prepared for how much I would miss Christmas's of the past. Last year with the pandemic we knew going into Christmas that we likely wouldn't be gathering with family. However losing my grandpa just a couple weeks before Christmas was not expected and took much of the joy out of the season last year. I'm so grateful for him to be reunited with my Grandma, and that I know I'll see them again. This year with the shock worn off, and in the trench's of a new chemo, I missed getting together with family more than ever and struggled to find the magic feeling of Christmas.
Because of how serious and potentially fatal COVID would be for Chris, and the fact that we've experienced being the ICU on a ventilator, we've tried to be super careful this past two years. We have been worried illness since before the pandemic, it's now just on hyper drive. With the vaccine available, we've relaxed a bit and have had some fun times getting together with just a person or two. Out of caution we always try to find out if they have been fully vaccinated as we know the risks are lowered significantly. When planning such visit our brains both are filled with questions as we try and calculate what risk we are taking. Are they vaccinated, should we ask them to wear a mask, would they come over if they've been sick? We try to remember to always stay a safe distance. On a few occasions we've hugged. I hate that cancer and the pandemic make me second guess that!
Early the week of Christmas we ordered a pizza from Little Caesar's. After placing the order it estimated about a one hour wait (so much for hot and ready). We waited to go pick it up and when it was supposed to be ready went to check on it. The girl at the register was stressed and told us it wasn't ready yet and they were out of the crazy bread we had ordered. While I waited, with my mask, I watched her tell multiple people that they were only taking online orders and that items were out. She looked so defeated, but just kept on going. Eventually our pizza was done (a bit overdone actually). As I got back in the car Chris remarked how he had noticed the same thing from inside the car. We talked about how staffing shortages and supply chain issues are making simple things so frustrating.
The next day for chemo turned out to be one of the most frustrating days in quite a while. Both sides of his port refused to work. Multiple nurses tried numerous times to flush it to get it working. He probably got a liter of saline just from all the syringes. They were able to get one side just once to faintly show blood return, which apparently was enough to give treatment and injected a medication to try and clean up the other line.
As they went to hang the bag of Empliciti I noticed that it seemed extra large. When we asked why, they did some checking and said it was because his dose was doubled. To make sure that he wouldn't react to the bigger dose, the treatment time was more than doubled as well. Ugg! Not a fun surprise. Needless to say we were frustrated as we would have come prepared differently. We had a meeting with one of Dr Sborov's team during infusion. Just like the poor worker at Little Caesar's, you could tell she was exhausted. It is obvious and frustrating that things are slipping through the cracks, including knowing that a dose is doubling. There were tears on both sides of the virtual visit. Pizza is one thing, but it's terrifying but knowing it's Chris's life hanging in the balance is heartbreaking. I know I've felt the need to be on top of things, asking the right questions and passing along the right information before, but now feel the weight of that responsibility even more.
Near the end of chemo, Chris got a phone call from a friend. He had stopped by the previous weekend to share an amazing experience, but was calling to let us know he had tested positive for Covid. We have tried to be so careful, but always struggled with knowing what to do. We let our guard down and didn't think to ask important questions. The stress of knowing what could happen was nearly crippling and made for an extra stressful week. We were looking forward to spending time after Christmas with some family, but instead decided to be cautious and cancelled plans. Each morning I woke and was nervous to access how I felt, and anxious to hear how Chris was feeling. The only symptoms either of us had are ones consistent with Chris's chemo (a bit more intense because of the double dose).
As if that weren't enough, test results for his myeloma markers started coming back. Numbers are trending the wrong direction and an M Spike is present for the first time since 2018. Ugg! Mary said that the average response time for EPD is 1.8 cycles, and we just started cycle 3. So perhaps there is still hope for this chemo. He has another PET scan scheduled for mid-January and we meet with Dr Sborov later in the month. The double dose the week of Christmas started Empliciti at once per cycle instead of weekly, so we are hoping that this is the chance for the daily at home portion (Pomalyst) to work it's magic.
As we now have officially begun a new year and reflect on the past, I'm trying extra hard to see the positive in what have been two difficult years. There is one clear and obvious blessing that came about because of the pandemic. I am so grateful for all the time that Chris and I have been able to spend together. While it may have gone out like a dumpster fire, we were blessed to be together pretty much 24/7. Despite all the challenges that he has gone through, he is always mindful of me and my feelings. He is intuitive and always trying to cheer me up when I've had a tough day . He is such a tender, loving, and thoughtful husband. I am so blessed to call him mine. So as we take baby steps into the new year, we are so grateful that we are taking them together.
