I have been so amazed by the love and support from my last post. The only thing that seems appropriate is a humble…
Thank you!
In the spirit of transparency, I’m sitting here on the eve before surgery to remove the clival chordoma and feeling pretty sorry for myself. I’m struggling with a few things. Pain. Exhaustion. Worry. Impatience. I’m tired of being in pain. I’m exhausted by the long list of ailments that I’m dealing with daily. I am constantly worried about what might come next and I’m impatient to resolve things and feel good again. What is sinking in is that they will never be gone. This is my life now and I need to figure it out.
For those of you curious, a quick heath update. If you are not interested, skip ahead….
I’m still struggling with the optic neuritis associated with MOG. I’ve started treatment but it takes a few months to kick in. So I sit here with significant pain and almost complete sight loss in my right eye today. Just four days ago, I had limited pain and most of my vision. They call this a flare, and I hate it. It will likely mean another round of steroids, which sucks, but they are better than pain and blindness.
Tomorrow morning I am headed to Emory for surgery number 2 this month. During the first surgery, my surgeon Dr. Solares got to the tumor (through my nose and a wall between my nose and brain) and based on his professional experience (which is extensive) and an in-room biopsy (which I now know is not 100%) decided to pull out of the surgery. He was convinced it wasn’t a chordoma and didn’t want to continue with an unnecessary surgery. When I answered my mobile last week and heard him say “This is Solares” my heart sank. Pathology always has the last word and in this case the word was CHORDOMA. So back in tomorrow to complete the job.
None of this is life threatening today, all of it sucks.
The emotional toll is also catching up with me. I can move from tears to relaxed to happy in moments. At times it’s hard to concentrate. It’s hard to navigate pain. It’s hard to manage the roller coaster that’s been the last three weeks. It’s hard to find a place for all these things in who I am. I’m trying to figure out this new identity, but I don’t like it. I don’t want to be someone with an autoimmune disease. I don’t want to be a cancer survivor. I just want to be me. In my more rational moments, I know that I am still ME. But a lot about me has changed in a short amount of time. What do I do with all that new stuff? I’m just not sure.
For now, I’m trying to focus on one day at a time, one thing at a time. And when my it gets too much for my brain, I color (side note – I’ve found an app for my iPad called Pigment that I love) or play with Cassie (check her out on the IG, Cassie_Doodle_Sassy), or do something with Andy, who keeps me sane and loves me big. But at the end of the day, I’m going to have to reconcile my reality with my brain. I’m going to have to weave my new reality in my BigLifeVision…Wish me luck.
Kimberly- I just learned of your diagnosis. We are cheering you on. You are so incredibly strong. Tom and I both have our share of scary health issues. Boy, no fun!! Keep your sense of humor and know how loved you are!!
Kim
Sending healing energy! You have lots of heart and lots of our hearts wishing you well! 🙏
Sending healing energy! You have lots of heart and lots of our hearts wishing you well! 🙏
Kim
I’m praying for you and will continue. This is so scary. Living with a condition is a growing process. You may not need all the answers all at once. You are a brave, fierce young woman who will find the path you need. Your words are so real and you are so talented. You’ve got this girl!!! Sending big hugs.
Darling Ms. Kimberly,
Please know that I am praying for your strength, bravery and patience with healing. When I was tangling with cancer, I saw it as a major distraction and often described it this way: I was taken down by a wave in the ocean, I respected it’s power, but it was a distraction from the things that deserved my attention. It deposited me in a different place, the view was different and so was I, but one I could navigate.
You are clever, self-aware and relentlessly kind. I’m so proud of you and your accomplishments, outlook and attitude. You have amazing Andy and your delightful sons. Don’t worry; it’s wasted energy. Instead be hopeful, positive and plan for a love and laughter filled future. It’s big and it’s waiting for you to shape it.
I love you,
Anne
KC,this is a lot of shit and I am so sorry you have to experience it. You are one of the most optimistic and driven people I know. And you have every right to feel what you are feeling. Believe me, when you are ready, you will find a new way forward. In the meantime, there are an army of us sending positive energy, love, and prayers to support you.
It should be afraid of you, you are so fierce my dear cousin. My pledge to you is that we will do the lower half of the Canyon together
Hugs
Big love to you my friend. I cannot wait to celebrate your journey. Maybe at the One Eared Stag! Until then, chin up, you got this.