I started writing in a daily journal when I was 13. From time to time, I enjoy reading back through some of the 10,000+ entries. It is always enlightening and often brings laughter and sometimes tears. As I wrote in my journal on New Years Eve almost four months ago (I started this blog four months ago and am just barely finishing it up... 2021 has been quick so far!) I reflected back on what a crazy year 2020 was and and wondered how similar the journal entry may be to another year we wondered if we would survive. Here is a line from my entry in 2017.
"This year feels like a lifetime and so much has happened. Even with all we've been through we've made it and come across on the other side feeling so blessed."
The same things can definitely be said for 2020. Just as in 2018, things won't magically get better at the change of a calendar page. However I'm optimistic that 2021 will be similar. Better a little bit at a time with likely some bumps and challenges along the way. Looking back on 2020, there were a lot of difficult things we lived through, but the best thing is that we were able to do them together. I choose to look back on the positive things that happened and not just the challenges.
For us the year 2020 ended on a roller coaster. Because of some needed dental work, Dr Sborov canceled all of his chemo (infusion and daily chemo at home) for the month. Except for the short little break to do collection it's the first time that's happened since his started chemo in October 2017. We looked forward to the break and to Chris feeling better. It didn't turn out that way. His dental appointment ended up being canceled by the dentist because of Covid and Chris spent most of the month feeling nauseous. We figured it was likely his stomach (which we've recently named Oscar) not handling some recently added medications. However it was the exact opposite. Unfortunately when we filled his pill boxes for the month we made the mistake of leaving out one small pill that was supposed to be twice a day and we mistakenly only did one. Adding it back in helped immensely, too bad we didn't figure it out until after Christmas.
In mid-December I received a phone call from my brother letting me know that my Grandpa Beauregard had had a stroke and things weren't looking good. A few short hours later we found out that he had been reunited with my Grandma. It was so quick and so sudden that at times it feels like a dream. The reality that someone can be fine one day and gone the next is so hard to accept. Losing him hit me really hard. Life is so very fragile, and I've often contemplated if given the choice which I would prefer? Is it better to go suddenly without warning or in Chris's case, be diagnosed with something that makes you face the realize of your mortality on a nearly daily basis. My grandpa was able to be able to die mostly on his desired terms and passed rather quickly and I imagine pain free. He was 87 and lived an amazing life. He provided so many opportunities for me and many others to make memories. I'm so grateful I was able to grow up around the corner from my Grandparent's and for the memories made in home, a cabin and houseboats that he built. Having him pass so closely to Christmas was a painful reminder that no matter what, Thanksgiving and Christmas will not be the same. The home that held so many memories with so many amazing people, will soon be filled with a new family making new memories and it breaks my heart.
Grieving during Covid was is so different. For lack of words, the best I can say is that it was lonely. My family did decide to have a small funeral, but I decided it was best not to attend in person. Chris of course was amazing and supportive, but to not gather with others together to mourn and hug was just a strange experience. I'm grateful for the technology that allowed us to still "attend" from home, otherwise I'm sure it would have felt more distant. The tears that were shed were not over his life that we were celebrating, but instead emotions bubbling to the surface struggling to come to terms with the fact that life can change drastically, in a moment. Never to be the same.
Despite the unexpected loss, Christmas however was still good. I enjoyed an entire week off from work in between Christmas and New Year's, something I don't think I've ever been able to do in my entire adult life. We slept in, played video games and just had a laid back week. The first week of the year was back to reality.... including chemo. It was harder than we thought to start back up again. Within a day or two of starting he developed a horrible rash and said it felt like he was on fire he was miserable. His body did not like being back on chemo!
The next week we met with Dr Sborov, and he changed everything! Even with December off, his numbers look good. The decision was made to stop Revlimid (the daily chemo) and Dex (the dreaded steroid). He will still continue to do Darazalex, but just like that.... things got better! The two medications with the worst side effects have been removed. The past few months have passed quickly and When I get off work each day he's often been eager to go for a drive to get out of the house. This week was chemo again, and having just Dara has already been such a nice change.
While recently watching one of my favorite shows (This is Us), Chris happened to join me for a moment and caught a perfect quote that he said was just what he needed to hear. He made it into this graphic with the picture that came to my mind. I'm not sure who said that you shouldn't let cancer define you, but when you are in the midst of it, sometimes you don't have much of a choice. I think instead I would say don't let cancer consume you. It clearly changes you, who you are and how you look at life... and death. However ultimately it is up to you to decide if it will ruin you.
The thing about a fence is that there are two sides on which to travel. We've been trudging through the muddy field, often knee high in difficulties for so long. Though the field has a times been brightened by beautiful wildflowers along the way, we are happy to finally be able to hop over the rails to the other side. So far we've been greeted by a quiet simple path which has allowed moments for reflection, love and laughter. We hope to spend much time, hand in hand walking down this quiet road.
However just this week as we met with Dr Sborov, we were faced with a difficult decision, one with which we are wrestling. He wants Chris back on Revlimid. Ugg. At this point there is nothing indicating that the "sleeping beast" is awakening, but Revlimid can help keep it subdued. Staying "progression free" is important and we appreciate that he wants to give Chris as many years as possible, but it comes at a price. So here we are, in the middle of a quiet country path, with fog obscuring our way. Do we go against the doctors recommendation or go back on a medication which comes with challenging side effects? It's not an easy decision.
