Warning the first: Mom don’t read this at work
Warning the second: This is probably going to be intense for some and contain questionably offensive language beyond my normal lack of mastery of the English language.
Let it begin…. This entire blog started when I was laying the hospital bed recovering from an emergency colectomy to remove the tumor and source of my metastatic colon cancer that had formed a near complete blockage in my system. Sarah asked if I would be ok with her keeping a blog about what we were currently dealing with and what was to come. She asked not because I don’t support her in everything she does but from knowing I am actually very reserved about sharing personal information and that there was not going to be a way to share her story without sharing mine. During our discussion after I said, “yes of course go for it, but only if you are doing it for you not others.” This led to us talking about why blog about it at all and we came to two conclusions.
- It is an efficient way to share news and the progress more broadly then texting, calling or emailing everyone.
- Maybe there is a chance we can have some impact on someone else’s life or understanding by sharing our story.
It is number two that brings me to writing this post. I have already contributed more than I ever thought I would but feel this is the post I was meant to write no matter how difficult it is for me.
Strength:
I had an incredibly emotionally charged weekend and it brought me some clarity and inspiration and insight I needed. My weekend consisted of hanging out with some of my favorite people on this planet and seeing one of the people who have inspired me for a long time but especially of late in Laura Jane Grace the lead singer of the band AgainstMe! who for those of you who are unaware of her is a woman, who in the world of rock and roll no less, was brave enough to transition from Tom Gable to the person she was meant to be. No, I am not coming out as wanting to be identified as a woman though frankly I know if that was the case the people who read this would understand and support me in the incredible way you have all along this journey and before. But the way she has inspired me as I was watching the show (which was bloody incredible) is as a former mediocre performing musician I began thinking about the pure bravery it takes to walk on stage and perform songs you have poured your soul into in front of a crowd of people, who many may be there just to get fucked up and have a ruckus time, because it is who you are and what you love. Then I thought one step further about the strength that takes and thought about the book she wrote about her life experience and transition that I have just started reading because I had heard it was super intense and frankly until recently have had enough to deal with in the intensity of my day to day. My epiphany while thinking about this over the past few days especially was that by not sharing more openly from my side of this story I was not helping achieve this goal of helping people with understanding and was only doing so out of my own fear of vulnerability.
After already thinking and struggling with this realization and concept, Sunday night I was wide awake at 2 am because I don’t sleep really well anymore and like I tend to do in that situation, I started down the Netflix documentary wormhole and came across a documentary titled “Be Here Now.” It follows actor Andy Whitfield (star of the show Spartacus) and his family’s experience after his being diagnosed with Lymphoma.
Warning the third: Sarah has already been warned but Mom and Dad don’t watch it, you already live it day to day with me. Not that it is going to be an easy watch for the rest of you.
But, I bring it up and put it here because it is a beautifully powerful documentary and other then one major differences in the progression of the story (Spoiler alert: His was 80% curable at the start and declines from there while mine is the exact opposite) there was a lot of it where I felt like I was watching myself in the third person. A lot of people I know desire to better understand what it is like, not that I have the courage and strength he shows in the film, but I very frequently get asked how I am able to be have such a positive attitude while faced with the situation I am in. This documentary does an awe-inspiring job of the “why,” the “how,” and what the day to day life is like of a stage 4 cancer patient so please watch it if you are curious. I know they will never see this but I feel it is important to say thank you to him and his family for having the bravery to share their journey because it is captured on such a personal level to be intrusive but it made me feel not so isolated in my journey, so Thank you.
Then last night I watched my good friend Mike Casey perform stand up magic to a packed house in downtown Raleigh. I have known Mike for going on 11 years and seen through being around him what a commitment to a passion, a whole damn lot of work, and willingness to put yourself out there for a craft that many people question or discount the validity of as a true performance art , though no one that has seen Mike perform feels that way or if they do I will cut them :-). That was round three and the proverbial kick in the ass to write this post… in three days I had seen three instances of people showing the strength to put it all out there for one reason or another no matter the judgement and now it is my turn.
Vulnerability:
Here is my story from my perspective, this past fall I started experiencing sharp pain in my abdomen and groin (it is the second one that got me to go to urgent care!). While at urgent care they did a CT scan because they thought I might have any number of the “ITIS” diseases such as Diverticulitis or Colitis or Crohns…. But in that scan the technician saw what they thought might be scar tissue on the very bottom of my lungs “probably from pneumonia as a child” and decided it was probably a good idea that I get a more complete scan done, this led to more testing and more scans over the next several weeks. I was tested for everything from a hernia to STDs to Tuberculosis because the suspicions from the scans and the bloodwork plus my demographics just didn’t make sense for what they feared it could be.
It was a Friday morning in October 2016 and I had just gotten off a call for work when I got the call from my newly acquired Primary care doctor (I didn’t have one cause I had not needed to go to the doctor for over 5 years) on the call this stranger I had met once says to me “Preston we don’t have anything conclusive but I am going to be setting up an appointment next Tuesday for you to see the Oncologist at Rex because it appears you have metastatic colon cancer that has spread to your liver and lungs. I am so sorry to have to tell you this over the phone. But if anything changes in your current condition over the weekend you need to go straight to the emergency room.” …click……silence……realization……silence…….
This was the hardest day of my life, not only did I have to accept that I was 31 years old with a cancer diagnosis that has a survival rate of less than 10% past five years from date of diagnosis. But also that I had to tell my wife when she got home, call my parents, and what do I do about my three year old son…….
That weekend was the only time I have been scared. Not scared for myself but of knowing what it could mean and the idea of leaving Sarah and Conor was and is the only thing I fear. It is completely selfish because they are incredible and would be just fine, I just don’t want to miss anything of the life we have.
After this it was a whirlwind of surgeries, getting an official diagnosis and then starting chemo every two weeks. But it was that weekend and the acceptance I had to come too of my own mortality that controls my attitude. So, when people are impressed with my positivity and outlook I think it is important for you all to understand that it isn’t a brave face or putting up a front of strength, it is coming from a place of acceptance of my situation, my unwillingness to let it control my present, and that I just see the world through a different lens now. So, please don’t give me the damaged puppy look when I tell you I am doing fine because I am.
Yes, Chemo sucks.
No, I am not looking forward to three more surgeries post these last three chemo treatments.
Yes, it does make me feel like shit and I spend my days in a constant state of discomfort.
No, I am not always strong and sometimes I am mentally defeated especially when hooked to the machine pumping nuclear waste through my body for 2 days and don’t feel like leaving my bedroom never the less the house.
Yes, side effects are real, I am not vomiting all the time thanks to modern medicine. But I can’t hold anything cold without feeling like it is cutting me and my hands often hurt and don’t work how they are supposed to all the time anymore and I have numbness in my lips and tongue that doesn’t go away and because I continue to be the less than 1%, a weird jaw locking thing that my doctors have only ever heard of once before.
No, I am not discouraged by the negative impacts this has had on my life such as losing my job, not knowing what tomorrow brings, inability to do what I want when I want because of reasons and needs beyond my control or discomfort. This is because I know there are greater things to come for me and the fact that I may be the luckiest cancer patient in history helps. My support system is incredible and I am crushing all the odds. Additionally, it is impossible for me not to feel fortunate while going to a cancer center for treatment every other week and seeing the people broken by this fucked up, awful, indiscriminate disease.
The moral of all of this and my reason for sharing is I hope you get a little better idea of what this is like from my point of view and how it is to deal with this type of situation so young. It is also to highlight that it is just that my scale is reset not that I have any strength of character that all of you don’t. I have just made the decision that I will appreciate the small things that make me happy and everything else just isn’t important.
So, I ask all of you that want to and don’t know what to do for me, is that you spend time with the people you love (family comes in many forms), go do what makes you happy, be tolerant of the people around you as you never know what they may be going through, and provide just a little bit more love to the world on a daily basis.
If any of you made it this far, thanks, and know I can’t wait for the next time we get to find joy together.
-Preston
It is what it is. 