Hi guys! What the heck...how did we get here...(yet again). Let's first address the Blog's title. You know me, I love a good alliteration and since the beginning I've called this little C-visitor a journey, but unfortunately I have no J in my name. So we're going with "Rach's remarkable ride" and that it has been. It's like a journey, it comes with ups and downs and crashes along the way, but it also comes with profound beauty and I can't wait to share some of those beautiful glimpses I get to experience during this ride of a lifetime. Plus, I fully intend to change the title of this blog to "Rach's Radical Remission" once most of this rocky part is behind us.
Moving on, let's also address the second elephant in the room. I have LONG wanted to write and journal about my experience and I knew that it would significantly help those that needed to know so badly what was going on with me. But I wasn't in any way ready for that, and the C-word does a strange thing. It makes you inherently, incredibly selfish..which is GOOD. I put myself and my mind/energy first and knew that with writing an update blog it generated in me a great fear that putting this into words was somehow going to make it true, impossible to beat and would create a more difficult time for me to heal. I know that is no longer the case and processing these events is an essential part of the healing process.
It has literally taken me three years to say in writing and out loud that I was diagnosed in October 31st, 2015 with stage IV Colorectal cancer which had metastasized to my liver and lungs. Fuck, if that doesn't take your breath away. (also side-note, and third elephant in the room, I'm the most sweary person you've probably ever met. I'm not going to change that about me. That's one thing this ride has taught me more than anything...be completely entirely true to who you are). Unfortunately for me, that comes with a side of swear. I get that I'll have some church ladies that wander their way onto this site and may find themselves offended and for that I apologize, but I most certainly will not change who I am because it may or may not offend someone. So sorry, Enid, if you have to find another way to receive updates. (But I love you regardless, if there is a real Enid out there who is genuinely worried about me :)
Okay, on to the most recent part of this journey/ride. Because shit just got real and scary pretty fast...again. I'll start with the most recent and then plan to take a few weeks to give you all a full overview of my journey and the different treatments that have been involved because it's just been a fascinating ride and I can't wait to share some of the things I've learned about myself, life and humans along this journey.
In May, Dan and I moved back "officially" to New York so that I could undergo a new clinical trial through Dr. Cercek at Memorial Sloan Kettering. This treatment involved some chemo, which I wasn't that excited about because no one likes a good dose of barf-inducing brain fog in the mornings. This protocol kept me stable for a while but there were little changes that I was maybe noticing that meant something in my body wasn't fully onboard with this plan. My anxiety started to pick up and while I was home in October I could tell something was off with me and maybe my mind's ability to stay in control. As many of you know, having the right frame of mind during this journey has been the single most important factor for my survival, meaning my survival in all aspects of the mind, body, spirit spectrum. This last October I felt like I was losing ground in one or some of those aspects. You'll hear me talk about this frequently throughout this blog but there are two basic emotions from which all others spring forth. They are fear and love. Recently, I felt like fear was starting to gain ground and of course this catapulted my anxiety to another level.
I also strongly believe that we need to learn from some of the lessons life hands us or else those lessons will fall back onto us in some form or fashion down the road. Each Fall, especially around October, I re-lived my original diagnosis and specifically this last one I came to the realization that I never processed this traumatic diagnosis. I think I made the mistake originally to try to put an immediate positive spin on this whole episode. I also think there was a lot of shame in this type of diagnosis. People always look for reasons for why cancer happens (diet, exercise, environment, biology) and I was looking at all the ways my body had failed me. It didn't feel good. So I blocked it. A self defense strategy I'm quite familiar with.
Well, this October I decided to radically accept my diagnosis. What an amazing thing I had just done for myself. I no longer had to deny all of the horrendous things I had been through, the surgeries, the treatments, the horror, the fear, the trauma....from all of which I SURVIVED!! I'm so facking proud of myself. I've done unbelievable things in the last three years and I no longer have to pretend that some of those things didn't happen. There are many reasons we don't process things. But a large part of my inability to do so was to protect my family and friends and all of those people who loved me so deeply who I knew it would shatter their soul to understand the pain, fear and trauma I was living. Part of this radical acceptance lesson was to stop protecting everyone around me. I needed to allow them to help me and experience maybe these difficult things they would be faced with from the act of helping me. Even though I tried to protect a lot of you supporters, you sure got through. I've never felt more loved or full of light in my entire life. One gift of cancer is to see how bright it makes the human soul shine when another soul is in need. F'ing hell, I love you all.
Okay, let's take things back up to the body sphere. So when I arrived back in New York to start my next new clinical trial on 11/15 I could sense a bit of a change with me. The infusion went well and I'll follow-up with another post about the science behind the protocol, because it's fascinating. But the following day I woke up with a headache. When I woke up the next day with a headache, I called the on-call doc (because it was a weekend) and she had the wherewithal to tell me to come into the ER/urgent care to get a scan to see what exactly is going on. I remember telling my mom that I could tell it was just a migraine because it was accompanied by some weird deja vu symptoms and that they would do the scan, find nothing and send me home with some migraine meds. When the ER doc came down and told me there were spots in my brain, I felt the floor drop from under me. It was as if all of a sudden I was in a whole new reality, a weird one where I had such little control. My mom jumped into the little cot I was on and just gripped me softly saying "we'll get through this, we'll get through this", and I knew then that we would. But this shit was traumatic, it was like re-living the diagnosis all over again and I thought for a second, "had I created this by radically accepting my diagnosis?" No, I hadn't. This was another essential step along my journey that will lead to an even deeper healing. I needed to be broken wide open again in order to allow myself to more completely put all the beautiful pieces back together in just the way they are meant to be. If you get the chance, look up Kintsugi - it's a Japanese art of repairing broken pottery with gold. Sometimes the broken pieces, when put back together, are even more beautiful than before: https://en.wikipedia.org/wiki/Kintsugi
Game plan. So the next obvious question for the doc was "what's next"? At MSKCC they are always so on top of this part of the process. She said she would be communicating with "my team" but I would likely be put in touch with one of the top radiation oncologists at the hospital, Kathryn Beal, and that she is. She specializes in treating brain tumors with stereo-tactic radiosurgery. According to her, these spots are pretty easily treated, respond well, and heal quite nicely which allows my symptoms (like headaches, weird deja vu episodes and potential seizure stuff) to resolve. Yay!
We also met with my new drug protocol team who assured me that the plan would be to stick with this current protocol and receive the radiation as a supplement of treatment. So we've got one option taking care of the new brain ninjas and one option covering the remaining disease found in my liver/lungs. I'll go forward with my next clinical trial infusion on Thursday this week and start radiation on my noggin starting next Monday.
Mind/Spirit -so a lot of you are wondering how I'm actually doing and although there have been peaks and valleys to my emotions, I'm actually doing quite well. A lot of crazy/eye-opening/spiritual things have been happening recently and I can't wait to launch into them with you in more detail, but for now you should know that I'm doing just fine. I've got an amazing support system, including both my Mom, Dan, Christina, Oryan, Michaela and everyone near and far who are taking great care of me as we're taking one day at a time.
Love you all so much, 🐝 happy