I haven't blogged in several months since there hasn't been much to report. No news in this case has been good news. We make frequent trips to the hospital, spend a lot of time working or doing other . I've struggled with knowing what to say, without sounding too negative. Compared to two years ago, things are better, but most days I wish I could just stay in bed and snuggle with my sweetheart.As far as myeloma goes, last week he started his 15th cycle of DRd. At that time they checked his myeloma markers (with various tests...but luckily no bone marrow biopsy) and he is still in SCR (Stringent Complete Response). DRd is doing it's job. We are so grateful that it's working and pray that it will continue to work. The longer this current treatment works, the more advancements are being made in myeloma and the better his chance of surviving the odds.
However the daily grind of continual chemo is challenging. He tries very hard to be optimistic and stay positive but I know that he's continually in pain, always tired, struggling to think through the brain fog and battling a huge mountain side effects. The past few cycles, his one week off from the daily med hasn't been enough to really recover. We've struggled with deciding if we should just deal with it or see if something can be done. It's a hard decision because there is no way to know if a lower dose will allow the myeloma to gain a foothold again. This week when we met with Dr Sborov we talked about some of the struggles. Rather than ask for a lower dose, Chris asked if instead he could take the Revlimid for only two weeks of the four week cycles instead of three. Dr Sborov said OK! Not only that, but we can try the change with this cycle and not wait until next cycle. Instead of a week and a half more, we now have only a few more days!
As well the "d" in DRd is Dexamethasone, a steroid. Steroids are one common in many cancer treatments and come with many challenging side effects. He takes it the day of his Darzalex (the big "D") and then again the day after. It wacks out his sleep cycle and he gets little sleep for about three days, and then crashes hard on the weekend. The numerous other side effects can make him irritable. He tries extremely hard not to "hulk out" but is always really glad when he can return to normal. As the Darzalex went from weekly to bi-weekly and now only once per cycle, the Dex has followed suit. Surprisingly they suggested that starting next cycle Chris should cut his dose in half. Not something we had considered asking, but a very nice surprise. With those two changes, suddenly the next few weeks look easier, let's hope it helps as much as we think it can!
In my last blog I mentioned that Chris was battling an infection in his leg. Here it is months later and it's still an issue. The infection has been gone for a while, but because we are constantly battling edema (fluid retention) his legs have often been leaking, keeping things from healing. It's been a struggle to find the balance between compression, to help with the fluid versus causing pain by squeezing a wound that is painful just on it's own. His skin is also extremely sensitive to adhesive, so trying to find a bandage that didn't cause even more wounds has been a challenge. We've tried numerous remedies, including medical grade honey, and various ways of keeping it bandaged and finally have something that seems to be working. It's slowly shrinking. Hopefully next time I blog we can say that it's finally healed.With the myeloma behaving, we have also been trying to figure out what to do with his brain tumor. It's taken a back burner for the past couple years, and while his MRI shows it's about the same size, it's up to no good. The hormone levels that caused us to find it are the highest they've ever been. His endocrinologist wanted us to add several more medications which we wisely did one at a time. Several of the side effects were just too much. Dizziness + Neuropathy and an increase risk of breaking a bone from myeloma is just not a good mix. As well after years of struggling to find a good endocrinologist, the one we found is an ND (Naturopathic Doctor) who will do meds when needed but strives to heal with more natural options instead of pharmaceuticals. She doesn't care for the chemo Chris is taking for the myeloma and the team at Huntsman struggles with how to know how her treatments could impact his cancer treatment. We're stuck in the middle trying to figure out how the balance the two. One of the medications she suggested when we researched into it said do not take if you had cancer, but then further researched showed it might be helpful for myeloma. We asked Dr Sborov's team and all of the really smart people looked into it. But decided that since it was a supplement and not an FDA regulated medication, there really wasn't much evidence to give a good answer, so they said it's up to us.
While treatment and working takes up most of our time, recently I've been able to spend some time doing some much more enjoyable things. At the end of April I spent a Saturday with my aunts Gail and Roxann at the Tulip Festival at Thanksgiving Point. I had always wanted to go, and I'm so glad they invited me to come! The weather was perfect, the flowers were stunning and the fresh air rejuvenating. Not only did we get to spend time among the beautiful flowers, but they also scheduled the opportunity to make a glass bowl at Holdman studios. It was fascinating and a very memorable experience. Even though the heat from the refining fire was blazing, the skilled hands of the glassmith helped me turn a lump of molten glass into a beautiful bowl.As well, a few years ago my aunt Shari and I had a tradition of going to breakfast or lunch once a month (or was it a quarter). She moved back from California this time last year and we've finally been able to start this back up.
My birthday was a mix of everything. I worked in the morning and then picked up Chris and we headed to the hospital for pre-chemo labs. He wasn't feeling well, so we changed our plans for the evening and had an enjoyable evening at home. Worried he ruined my birthday, he secretly messaged my friend Rachel and after her long day at Huntsman she picked me up and treated me to custard at Nielsen's.
While trying to find time and energy for enjoyable things is a challenge, it does bring much joy. The daily struggles of living with cancer wears both of us down. It often leaves us feeling weary, emotionally ragged and melancholy. Each day however is a new day and for now we are so very grateful that our bicycle is on a path that is hopefully headed in the right direction. Another aunt of mine recently asked "How are you really doing?" This question is hard to answer and I feel often comes with "buts". We are...
"Tired, but grateful"
"Cautious, but optimistic"
"Battle-weary, but alive!"