Crawling Towards the Cure
Last updated: October 2022
You know how when you’re running a race and you’re so tired you just want to stop, but then you see the finish line and it gives you the will to push just a little further? Or maybe you don’t because personally the idea of running a marathon seems unrealistic to me… but you get the imagery.
A detour to the hospital
I just got out from a hospital stay after a CF flare up. This one really knocked me off my feet. It’s a great thing that I haven't been hospitalized in almost ten years, but I think that made it harder to deal with it this time. It was also my first hospitalization since separating from my husband, who was a really wonderful caregiver during my previous stays.
The exhaustion was just soul crushing. The nightly wake ups were frustrating. The fact they couldn’t get a PICC line the first two attempts was devastating.
When I laid on the procedure table, covered in blankets and surgical covers, hoping the third try would be successful I had probably my lowest moment to date. I felt alone and scared as I faced the reality of this third try not being successful. If it wasn’t- they’d have to attempt a PICC line in my neck or a more invasive surgery. I felt panicked, as well as crushed by sadness. I was angry at my veins, my lungs, my body. My body was so tired.
A difficult disease
This disease isn’t an easy one. It’s exhausting. Painful. Scary. Sometimes it’s very lonely. So, as I laid there, with all the free time in the world to think, my anxiety overcame me. I had a vision of my best friend holding my two sons as they looked on at my funeral. She was trying to comfort them, even as she struggled with my loss. Unbeknownst to the doctors, tears streamed down my face as I laid on the table, facing away from them. I cried thinking of my kids losing their mom. I thought of graduations and weddings they wouldn’t have me present for. Grandkids who wouldn’t know how much I loved them.
I cried for my best friend and for my family who had enough pain and loss in their lives, and I didn’t want to add to it. I cried for me because I was just so tired of my own pain. It’s been a really rough few years emotionally, and in that very moment I couldn’t handle the weight of my failing health. I couldn’t handle being alone in that moment. I couldn’t handle how tired I was physically and emotionally. For a moment I fantasized about how easy it would be to just not have to fight anymore. I reassured myself my kids' father would make sure they were okay and for just that moment I imagined the weight of fighting so hard, lifted away.
Words of a warrior
As I laid there, I heard my best friends' words from the night before. She’d told me maybe this struggle I was having right now is just the world's way of proving I can do this on my own. I am strong enough to overcome this. So, as I laid there unwilling to give up for my loved ones, I also had a momentary realization I would overcome this- just like everything else I’d already survived. As I acknowledged the fact, I still had fight in me I was suddenly overcome with a thought. I’m so close to the finish line: a cure, better treatment options, feeling happy again. I just had to keep going.
A tough few weeks
The weeks to follow consisted of so many ups and downs. They succeeded on the third attempt and got the PICC line in. It was in my right arm which made things pretty difficult, but I was just grateful they succeeded. I was released home the next day to finish out my IV treatment.
My boys helped me as much as they could at home, and their dad helped where he could too. I had two friends check in every day by phone, as well as my mom. My mood shifted back and forth throughout the ten days. I had a lot of dark moments but also bursts of hope. Daily reminders of why I keep going. Finally, after a rough two weeks my IV was pulled a few days ago. I’m still very tired, but not as badly as I was. I plan to slowly get back into the gym to help build myself up again. Most of my days my mood is much better too.
An end in sight
Then today, something wonderful happened. I opened up my email and read a message. An announcement of an investment of up to $5 million for Carmine Therapeutics to continue lab research. They are working on a method to deliver a potential gene therapy to people with cystic fibrosis that would temporarily eliminate the symptoms of CF in the lungs.
I had a moment of hope again and overwhelming emotion. I remembered my thoughts as I lay on the operating table: you’re so close to the finish line, don’t give up. So, I sit here tonight, in my bed, choosing to keep up the fight. I know we are so close to a cure. We just have to keep running towards it. Maybe walk towards it. Crawl to if that's what you need. Just keep moving forward. We're almost there!
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