I miss drinking coffee.
Not only am I spoiled by living in Central Oregon and having access to some of the best roasters EVER, but it’s part of my ritual. It’s comfort. No matter the season, I can happily rely on wrapping my hands around an obscenely sized mug and sipping my way to it’s bottom throughout my morning.
I haven’t done this in a while. I’ve left behind quite a few of my rituals. A lot of my comforts have been laid aside for what we now call, my “new normal”. Writing is one of those things. I used to write so often. I craved the outlet. I felt like I was documenting, recording, venting, being transparent. Maybe even bringing others together who might have something in common. For quite some time, I’ve felt a sense of decapitation. Lots of feelings have swirled around that headlessness. Mostly directionless. Feeling foggy. Numb. Misunderstood. Like my ship has been hit. With that came a need to lay quiet. To be still. To observe more and receive direction.
I have always written. It’s part of who I am. It’s how I process both goodness and grief. There are a million good things that come from writing publicly to the few negatives that come with putting yourself out there to be perceived and assessed, to be criticized and evaluated. The support that I have received over the past year from the growing plethora of people affected in some way by cancer has been overwhelming and amazing. That in itself makes it all worthwhile. This journey has been quite a beautiful one because of the people who have come into my life because I have put mine out there. On the flip side, during your lifetime there will be those who may never believe in you. They may absolutely NEVER “get” you. Sometimes, these people you may feel know you well, so it feels extra undeserved. Sometimes the people who don’t believe in you will be people you don’t even know, just looking for someone to criticize. Whatever the case may be, it is important to note that not everyone will agree with the things that you are doing, and that’s totally ok. The key is to stop letting people who do so little for your life, control so much of your mind, feelings and emotions. This is where I am. I’ve let go of those that God found a way to weed out and made permanent space for the people He has, over time, handpicked to be here.
That being said, despite my weariness, my weakness, my growing tired body; I still have a wildfire in my soul. I hope to breathe it back to life, after these past few months of feeling snuffed out. God has stirred that in me over and over again. My days and my world and my head have been extremely full…. but my words…. they have been silent. Intentionally. Something stole my spark. After having thoughts and blog content a-plenty, but no drive to post or write ….I pray for the invincible desire to put it all out there again.
I realize the obvious scattered-ness of this entry, but since an update is hugely over due, I kind of just spit it all out there. I’ll try to cliff note the last several months for those who don’t follow my facebook updates. Bare with me (and I promise to get back to more insightful, cheery postings soon!)
Since summer started, I haven’t stopped running. Sometimes, quite literally. I’m not sure if it was my attempt to fill my days to the brim after months of being on lockdown, or a mission to distract myself from what was happening to my body, almost like I was attempting to prove to myself that I REALLY wasn’t sick. Running, running, running… mommy’ing, friend’ing, filling my days with family and outings, and tasks, household chores, doctor appointments, chiropractor appointments, naturopath appointments, anything appointments. My weeks and days were mostly attempts at finding anything that would slow down the relapse we discovered only 2 months after stopping chemo this year. A severe blow to my entire family and circle of friends; we licked our wounds and I hit the ground ready to figure out my next steps. I knew I needed a clinical trial, since I’ve been strongly opposed to a second round of chemotherapy. Despite the adamant advise from my doctors, I started researching everything I could and with the help of a clinical researcher, who started filling my inbox quickly with trials I might be eligible for. Months was spent filtering through them, fundraising and trying to configure how much time I had until I HAD to start something again.That time came the day after returning home from our annual family camping trip at Trinity Lake.
I had been sick off and on during that trip and knew my time was running out. As soon as I got home, I high tailed it to see my doctor and off to the hospital I went.
My lungs were buried in fluid and my kidneys were shutting down. Six days in the hospital, a surgery and two lung taps later, they let me go home and told me to start chemo right away. I argued with several of my doctors for a few days and we were off to do some mach speed research. Thank God for my sister-in-law, Kacy who took it as personal mission to contact several Universities, hospitals, trial coordinators, doctors and researchers.
Ben, our clinical researcher recommended IAT and we went back and forth between that and the Gerson Institute for about 4 days before deciding on IAT. A week later, several faxes, phone calls and last minute travel arrangements later, a tearful good bye from the boys, we landed in Freeport, Bahamas for an 8 week immunotherapy program.
My parents dropped everything and came with me to get me settled here, and so far, we’re a week in. I’ll start detailing the bits of that journey as often as possible as I feel it’s imperative to get this information out there for others going through the same thing.
… and a final sassy note….
I just spent 16 minutes Skype’ing my boys…. I just saw their faces across 4000 miles. They are not with me and I am not with them. Cancer, I hate you because you are ruthless and unfair.
I will kill you.