However with the same process repeated in August, his numbers were headed back up. His August chemo included the normal Dara infusion as well as adding in Revlimid for 10 days. We know that the problem is likely his smaller dose of Revlimid and were prepared to increase things to help stamp the myeloma back down. But when we've with members of Dr Sborov's team, for some reason have really struggled for them to actually hear us. Honestly a frustration that has been growing at least since last fall. We have had multiple conversations where we feel like we are on the same page. Then when we go back into the meeting notes they don't seem to represent what we felt we talked about. More than ever before communication is a huge struggle, and it almost feels like we are speaking a different language. They've gone down a path to switch to a new treatment, which we know we did discuss but we just don't feel like we are there yet. We worry that they want to give up on his current treatment when all it likely needs is a dosage change. Chris is willing to fight though the side effects and tolerate a different dose as we feel it can push the myeloma back into a corner. We kept pushing and they finally agreed. While we hoped for a higher dose for a shorter time, they said they want him on the same 10 mg dose for 21 days starting the same day as Dara. Since we didn't start Revlimid before the cycle, his numbers are higher than they have been all summer.
He had his first ever PET scan last week. They said it would take several days to get the results, but they showed up in his online chart within a few hours. There was a lot of information to try and sift through, and it made us a bit nervous when we got a call from Dr Sborov that evening. There was good news, such as no concerning lytic lesions in his bones. There are things to watch (such as an enlarged spleen). His primary concern was some masses showing up in the lower abdomen. Because getting imaging has been a struggle he doesn't know if they are new or old and wants to get a biopsy to know more. He mentioned they could be Amyloidoma's (a very rare buildup of Amyloid protein). Fairly early in his diagnosis they tested for Amylodosis where a protein called amlyoid forms in your tissue, and it was negative. Amyloidoma is very rare tumorlike deposit. Knowing what the masses is top priority. As well, wanting to still know more about his myeloma, Dr Sborov pushed again to do a bone marrow biopsy. Chris explained that because of his fragile airway, the less than ideal samples and the extreme pain of getting it from his femur he wants to save it for a last resort and Dr Sbrorov acknowledged that he understood. Chris wasn't trying to be difficult, and his concerns are very valid. He was very grateful that Chris was able to get the PET scan and I'm sure there will be another one in the future. He did ask Chris to double his doses of Revlimid right away, to see if we can get things back in line and have a better idea of what to do for next cycle. Being able to speak directly with Dr Sborov was also very re-assuring. It showed that our main frustrations have been trying to communicate medical issues through a team to him is a horrible rendition of the telephone game.
Luckily the past few months weren't all about myeloma, we had a few highlights. We took things easy the last part of July and enjoyed watching the Olympics. It was so strange to see the the stands empty, something not to be forgotten. We were able to see different events that we didn't always catch and it was the prefect diversion and gave us something both to look forward to. Plus with the delay because of Covid, we now have less than 6 months until the winter olympics.
Another highlight of my summer was the chance to meet my new niece, Leah. A precious little angel, straight from heaven. I met her shortly after she was born and then recently spent an afternoon with her cute little family. Her sister was born the year Chris was diagnosed, four years ago! My time has flown. Back then, one day while Chris was stuck in the ICU my brother and his wife invited me to get away from the hospital for a real shower, breakfast (with bacon) and some baby snuggles. Snuggling a sweet baby, marveling at their tiny fingers, nose, toes and ears all put together so magically is a wonderful reminder of the magic of life and a loving creator. It was a great escape from the challenges of life we were facing then. So this summer, with the worries of myeloma on my mind it was a blessing to be able to visit my two nieces. Leaving my worries in my car, I entered their home and snuggled and fed sweet Leah and had Tess try and teach me how to play Lego Star Wars.
Today we spent the afternoon at the UofU getting a biopsy of one of the masses. It's the first time in a while we've had to be back up at the main hospital and simply being there brought up a lot of memories. Good news, I was able to be with him while they did the biopsy. They did the biopsies under ultrasound and so we both asked lots of questions about what was showing on the screen. (How anyone can read an ultrasound and know as much as they do is amazing to me). It was also interesting that they waited to do the procedure until a pathologist was there with his microscope. They explained that having him there was just to make sure that the samples they got were adequate to do the testing they needed. Near the end as they were discussing, I caught bits and pieces of the conversation. There were words I heard which I was familiar with, that could mean it's not something major. But we also overheard the pathologist say it was like nothing he had seen before. He said it will take several days for them to run tests and give us an answer. Probably not until next week. Waiting, ugg!
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