I feel like we're getting to the point where the cards went flying and we're trying to catch them mid-air before they hit the ground.
On January 6th I had a scan and on the 12th we discussed the results in length. My tumor is growing fast. Brain tumors are rare so it is hard to tell what that means. There isn't enough data to say "tumors that grow x amount over 6 weeks tend to...". What is certain is that they are "very concerned". So much so, we are trying some treatment options that aren't the standard practice but show promise for some of the genetic mutations of my tumor. I appreciate their creativity in crafting new options for me. Whatever it is, it's worth a shot!
My cognitive abilities are holding up well. At every appointment, they test me on my vision, memory, thinking, and balance. They try to keep professional and neutral, but they seem surprised at how well I perform despite what they see on my scans. I love that look of relief they have when I've completed the exercises but it also makes me apprehensive. What if I'm standing on the thinnest piece of ice atop the deepest ocean and will fall under at the slightest breeze? As if all of the wreckage has already happened underneath and when the ice cracks, that's it, I am unrecognizable. I worry that we haven't done enough to prepare for an immediate change.
This form of distress has created a new game: is what I'm feeling now Earl, chemo/radiation damage, existential crisis, pandemic burnout, mom brain, or a toddler learning boundaries? We all have a long list of stressors to choose from each day, isn't it fun? For me, the first things in the list I just wrote make the last few in the list harder to manage. So I blame Earl! It's Earl's fault I can't find my phone for the 4th time today. It's Earl's fault that I overslept an hour. It's Earl's fault the baby has managed to take his diaper off for no reason right in front of me!
Aaron has been at every appointment and has assured me that the doctors haven't given us any information that would suggest I switch personalities overnight. However, Earl is not convinced and will probably do his best to dole out another unexpected challenge or two. Either way, we are moving ahead with preparations for when I expire. It is overwhelming to remove myself from my home and loved ones while still living there and loving them. Earlier this week, I saw a meme that discussed how our elderly friends and family members go through this process and encouraged us to show them more grace when they're moving slowly and having a hard time letting things go. They are remembering and grieving their life. Me too.
In addition to thinning my possessions, I am letting go of plans and making other plans for Torin and Aaron. Because I am immunocompromised and we have Torin, we won't be traveling to some of the locations on my bucket list. It's ok though, having cancer ten years ago taught me that we can't always get what we want. However, we are renewing our passports just in case the world shifts and my abilities maintain. In the interim, we might take a road trip somewhere warm enough to swim with privacy and a good view. We are open to recommendations. As far as making plans, poor Torin is going to have every outfit he ever wears until 18 already laid out for him! I am trying to not accelerate to that level of neurosis but it's my son, you know how it is.
Having to sift through a plethora of emotions has been exacerbated by some drama around getting coverage for my new meds. (Hence, cards in the air.) They are not standard practice so I still do not have approval for coverage for two of them. However, I received and started my newest chemo tonight. Despite setbacks, we are moving forward with my treatment. That is one less thing to worry about! Also, continuing to pass my cognitive exams with flying colors is one more thing to be grateful about!
Torin is experimenting with "if I fits I sits" and looking at these together I realize this location might also be where he likes to take a water break and eat a snack. Ooook? Our tiny human is eccentric, sweet, and perfect, obviously.
Love you daughter.😘
ReplyDeleteThis is wonderful. Please continue to share your journey.
ReplyDeleteYou are a fighter and your positive attitude will continue to assist in destroying Earl!! Prayers and love...🙏❤🙏❤🙏❤🙏❤
ReplyDeleteLove you❤❤❤
ReplyDeleteI am so inspired by your courage and gratitude. Thinking of you and hoping the new course of treatment eliminates Earl.
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