An update from Facebook about the last few months.

Hello all! I’ve been a bit quiet on social media as of late to focus on my family, work, and life in general and all the stuff that comes with being a cancer survivor and to take time to focus on myself and my mental and emotional health. From my experience, many people who have never experienced being diagnosed with cancer or taken care of someone on an intimate level with this disease think things get easier as time progresses away from the thick of active cancer and all of the week-to-week treatments and appointments as they fade away. This illusion of things returning to “normal” or how they were before life with cancer simply does not exist and a cancer patient’s life is forever changed whether that is physical, mental, emotional, and/or financially, and oftentimes all of these. One of the ever present themes is worrying if your cancer will return and then having to relive the trauma of active cancer again. I am not a stranger to cancer coming back, and my last time it required more treatments, chemo, and radiation, which really did a number on me, but fortunately, we had a path forward and I was able to “kiss my ass goodbye” quite literally to remove the cancer, but removing more body parts in the process. However, it alleviated so many issues for me and has allowed me to live my life again, swim all the time, play with the kids, and do many of the things I could before diagnosis by getting rid of the broken plumbing and cancer that returned in my tailbone. My one-year APR follow-up was great and clear which is great

 

In early May I had my routine scans and we discovered a tiny spot on my left lung that had grown slightly that has been there since my diagnosis in July 2018. Fortunately, lung metastases grow very slow, and considering some other factors at the time, we had decided to watch and wait until the next scheduled CT scan in 3 months pending my Signatera ctDNA test came back negative. Well, it didn’t. It came back positive for the first time in 5 readings, but was a very low reading compared to my first reoccurrence. This prompted a PET scan which confirmed the tiny lung nodule in fact did have uptake, indicating it was cancer. This is the fear of every cancer patient that their cancer has returned, it’s a sad and lonely place to be, especially when you do not have a plan together or know what is going to happen, you relive all the prior treatments, scans, and hardships already endured and play the game of what-if this and what-if that, and it isn’t a fun place to be reliving the PTSD of a cancer diagnosis and a lot of anxiety. I had a few appointments with both my oncologist and some specialists over May and early June and will be getting an MWA ablation on July 8th with a biopsy beforehand in the Interventional Radiology department at KU Med Center. Doctor Collins is extremely confident in doing the microwave ablation and the spot will be completely eliminated. That puts my mind at ease and I am ready to get it done, and we discussed that I will not be going back on chemo at this time and to continue my normal 3 months CT scans on August 1st and we will see what they say along with the ctDNA test again. Wack-a-mole!

Since early 2020, I have also been dealing with the Veterans Administration for a claim for my cancer overlapping with my Navy service and exposure to toxic chemicals while in a special carrier overhaul in the Newport News Shipyard and some exposure I had during a deployment in the Persian Gulf. I had early symptoms of CRC start during this time and was largely covered up with heartburn meds and then when back into civilian life, the VA prescribed me more heartburn medication for GERD that I was diagnosed with while on active duty. I didn’t think much of it at the time because who is worried about cancer at age 25, especially when medicine helped the issue? In retrospect, it was masking something greater in me that we simply didn’t even think could be cancer at age 35 and my oncologist said my cancer was in me for over 10 years with the extent at diagnosis, squarely placing it within my period of active duty. Military service members run a 25-35% greater risk for colorecatal cancer due to their military service and there is no DOD funding currently to research into this for colorectal cancer and support for it (Fight Colorectal Cancer is actively working to change this). My claim for benefits has been denied twice now, one due to being given wrong information by one of their employees on how to file, but it got to the point where I got my Senator's office involved to help in the filing process. 

The day I dropped off the packet felt like a ton of bricks had lifted off my shoulders since I have a lot of PTSD from it, but not from a live war zone, not from losing a limb during my service, but from the cancer treatments and surgeries and all the residual effects that have ravished my body the last almost 4 years and has taken so much from me years after my active duty service was finished. The feeling that my service may have caused this and for the VA to do nothing is simply summed up as feeling betrayed. It took a lot of mental energy to get that finished and dropped off to his office and just today I was able to talk to a VSO with the state of Kansas to help get my claim setup the right way and I was referred from the Senator’s office and their VA helper. Here is hoping this time will be a success with their help and with last week and the largest Veterans bill ever for Toxic Exposures and Burn Pits passing the Senate and going back to the House and then to the White House to be signed into law. Fingers crossed.

After I dropped off the paperwork a few weeks ago I was headed to the airport to go to The Colon Club's Colon Camp in Tennessee for 5 days. This was a professional photoshoot for a publication called On The Rise. Young, Diagnosed, and Surviving, and also a retreat. In addition to the shoot, I will be sharing my cancer experience and what I do to help others and be featured in the magazine that comes out next March. We also had full access to a wonderful property where the retreat was on with a huge lodge and surrounding cabins and a lake. When our shoot time was over, we just hung out and relaxed and bonded with the 12 other survivors and caregivers that were chosen to go to camp this year and be the Colon Club class of 2023. 

 

The chance to bond with these wonderful early onset folks affected by this disease and to hear their own unique stories of how they are surviving during and after cancer treatments. It was just what my soul needed that week not knowing what would happen with the reoccurrence and worrying about the VA thing. It was a very emotional week but also a very fun week with a lot of time with nature and getting a reprieve from a lot of the noise that is ever present in our lives. It was needed to remind me and to reaffirm why I am helping people with patient outreach and advocacy work, there is so much that can be done. This class of 2023 was an amazing group of humans some of who I had met before and was able to connect on a deeper level as well as meet new folks who are doing great things and making their own ripple in this world. Trevor Maxwell's impact on founding Man Up to Cancer was very present with all the guys that were invited and Chef Jack Birren being a part of the Wolfpack men’s emotional support group and his movement for men’s health support. 

I someday hope to give back in a greater capacity and this retreat showed us how we can make a bigger impact in the world while also enriching each other with a friendship that will last forever and inspire more people. I really look forward to making a difference in the world with them. A huge thanks to the all the staff and chefs (Jack and Mikey) that cooked amazing meals for us all week and to the entire photo shoot and prep crew (Alayne), every one of them is an amazing person who really cares and is fantastic at what they do and each has their own unique and amazing stories connected to colorectal cancer. I cannot wait to see the final product next March. Thanks to Molly for co-founding such a wonderful organization that is really making a difference for early-onset CRC. 

What we learned at camp had an immediate impact too since when we were in the airport on the way home three women sat down near Lindsay and me. We would have been gone but our flight was delayed 25 mins. They said they didn't plan on moving where they were sitting in the airport but for whatever reason did. While sitting there one of them saw my Get Your Rear In Gear shirt on and said it out loud. It caught my attention and I mentioned it was for colorectal cancer awareness and she immediately turned to one of them who turns out her sister-in-law had just been diagnosed with stage 4 colon cancer two weeks earlier. I explained we had just come from the camp and its purpose, then shared my stage 4 story and the support and advocacy work I do and she immediately burst into tears and commented on how well I looked. I gave her a hug and shared a lot of great resources with them that took me nearly 10 months into my cancer experience to get and Lindsay also shared her experience as an oncology nurse and survivor too. I firmly believe the Universe made our paths cross that day and provide them with hope.

So there is a short story for you, apologies for the really long post but I have been meaning to write this all and it has been 2 weeks since the camp and I am just now processing a lot of it and how great it really was for us all and to finally get it off my chest, and hopefully reach someone out there in hopes they would want to seek care if they are due for their colorectal screening and have been putting it off, or are having issues with digestive health, or family history and to also maybe help inspire someone to be their own best advocate for their health to improve their care during a traumatic diagnosis such as cancer. Thanks and lots of love to you all! 💪💙

This song from Iya Terra has been such an inspiration to me for the last month and a half to process it all and where I want to go with advocacy and helping others. Cancer changes a person, sometimes for the better.

"So let my heart be my guide

Focus on the mission

One step at a time

Analyze my vision

If I fall out of line

I know we gonna be okay

And let my words ring true

All I ever wanted was to see this through

I can feel your spirit

Let it carry you

Through your darkest of days

And always follow your heart

Even when those days

They get so hard

Remember it all has it's purpose

As long as you're learning

It's all a part of your journey"

-Follow Your Heart ❤️💛💚

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