
Before I get into the post, a few things. First, for those who aren't aware, I was diagnosed on July 1, 2022, so July 1, 2024 (today) is my two years. Second, this is a long post, but there are many things that I've learned in the last two years. And third, yes, today July 1, 2024, I jumped out of a perfectly good airplane.
Two songs that kind of inspired this post and my reflections on my two years. All I can say is that today is the first day of the rest of my life.
Ok, two years. I can't believe it's gone so fast. Let's start with what two years of Burt's healthcare looked like. The :60-second version!
I got diagnosed
I had chemo
I had lung surgery (they thought I had lung cancer too but turns out I didn't)
I had a major liver surgery (took liver and gall bladder, supposed to take tumor from pancreas and spleen but couldn't because I lost too much blood)
Am on a monthly shot (every 28 days) and that's it for oncologist-prescribed treatments
I've been stable for the last few scans (I get scanned every three months) so have been living life in 3-4 month chunks (next scans are October)
Overall, my main symptoms are fatigue, occasional GI stuff, sleep but thats mostly it
I am doing great overall. I am more myself then I ever have been, mostly happy, having fun, meeting lots of people and trying to make a difference in the world
I have no idea what comes next, but I don't care. As you will see below I am trying to learn to live and appreciate one day at a time
So that was the boring stuff. The timeline. But now it gets more interesting (at least to me). The purpose of this post is for me to focus on what I've learned, not what I've gone through. Here comes some overall lessons (in sound bite form and not in any particular order) with added descriptions:
In a lot of ways, my health has been a gift
First of all, I am very lucky. My symptoms aren't that bad and although I have two of these fuckers, neither currently pose a huge threat. But, getting these diagnoses has changed me for the better. I appreciate everything more. I am more aware of the world around me and more sensitive to people. I am closer to family, friends, I am more honest, engaged, aware and I feel like a better person. I also like myself better.
You can call me Burt, or you can call me Jake, but just don't call me a cancer patient
Labels matter and, in my mind, not in a good way. I am not a label, I am me. You are probably bored of me saying this, but I am not a cancer patient. I am Burt who happens to have cancer. I also have allergies and other stuff, cancer is just a higher degree of difficulty. There is too much of a desire to label everyone and as soon as you label someone, you are stereotyping them. We see it now in politics, culture, religion, healthcare, etc. I am always Burt, regardless of what I have, what I feel or what I believe. People are people, they are not their labels. And all people deserve to be treated fairly, with respect, and cared about, no matter where they were born, what religion they are, what they believe or what conditions they might have. Labels de-humanize the individual (yes, this is a soap box for me).
It's the worst way to meet the best people
I stole this quote from one of my friends (Bethany). Tough circumstances can always bring people together. I have friends now who I am closer with than people I've known for my whole life. A lot of people can't understand what you are dealing with (whatever it is). But when you find good people who do, they are worth everything.
It's ok to feel the feels
When I used to be sad, mad, happy, whatever I would spend a lot of time trying to figure out why and fighting to get myself back to my normal state. Now, I've learned that we all handle a lot and we will feel differently for a lot of reasons, and that's ok. I no longer try to be in a good mood. If I am, great, if not, that's ok too. I let myself feel as I feel.
Be real and focus on what matters - figure out what's important to you and hammer it
Gone are my days of wanting validation on everything. Now, I just want validation on things that matter to me. So, hearing from another person that I helped them is way more important to me than work validation used to be. When I took some time, and decided what was important to me, I also started to understand how getting validation in those areas mattered most to me. I set up my 4 principles, which I review at least yearly, and make decisions based on them and look for validation most in these areas.
Healing myself
Better supporting my friends and family
Helping others heal
Helping other who help others heal
Live the fuck out of life - it's my life, take control of it
Before I started dealing with this stuff, I was stuck in a routine. Get up, go to work, recover on weekends, on occasion do something fun. But now, I realize that we aren't here forever, and we need to enjoy as much as we can. I am not going to be ridiculous and say make every second count, that's too much pressure (and if you don't want it to count, it doesn't need to). But for me, I know I like doing things, taking risks and pushing myself out of my comfort zone. I need to keep it in my control, and not outsource it. For example, when I got diagnosed, I felt out of control and catastrophized everything. I got out of the hospital, learned a ton, and gained a lot of control back. That control enables me to feel confident in doing the things that I want to do.
I can do it (ICDI) - A mantra
Yes, there are things I don't do anymore (although I still think I can do more than I should). But that doesn't mean I still can't do stuff. My ICDI program is still in full force. I take long road trips, I camp and hike, but I might not climb mountains anymore. Will I do it again? I hope so. But for now, every step I take proves to me I can do something. So, when something is too hard, take a few steps back and start there. So climbing mountains is too hard? Take a hike. A 10 mile hike is too hard? Take a 5 mile hike. Etc. You can always do something, no matter how bad you are doing. If you love golf and can't play 18, play 9. Can't play 9? Play 3. Can't play 3? Go to the driving range. Can't go out? Set up a putting green in the living room.
And guess what I did today in honor of my two years? Yup, I jumped out of a perfectly good airplane and took the PNET Plunge (credit to Mark Dillon)
Don't sweat the small stuff, it just doesn't matter - PERSPECTIVE IS EVERYTHING
This is a tough one and MUCH easier said than done. Does it really matter if someone is annoying? Does it really matter if someone is petty? Does that email really warrant getting you frustrated? When you start realizing there are bigger things to think about, a lot of the smaller stuff can go away. It's important to note that you need to be sensitive to those for whom it doesn't go away, but your perspective changes.
Appreciate you for you and fuck those who don't like you
I love myself and I have worked hard to get here (and still do). And, if you don't like me? That's your problem, not mine. As long as I like myself I am happy. And the relationships I have and value are with those people who like me for me, and don't expect me to put on an act for them. Gone are the days of me caring about people pleasing or one-way relationships
Those around you are different than you and look at your illness differently than you do
Another one that takes a while. This one really hit home two weeks ago. I got scans that said I was stable but I wasn't happy. For me, I am stuck in this morass and not getting worse isn't happy news. But, then I thought about the others around me. Me being stable is great news. It means I am not getting worse and no one has to worry about me more for a while. I eventually get happy about stability too, but it takes me a few days. But, learning that everyone can hear the same news differently was a valuable lesson.
One day at a time
Stop stressing over tomorrow. "What ifs" can cause so much anxiety and are more often not true or over stated. Reduce the time horizon of your focus. If you focus on every day, and achieve what you want to on that day, you will be much happier than worrying about what might happen 3 months from now. Again, easier said than done but worrying about stuff that may or may not happen will just make you miserable.
Death doesn't matter to me
But not living does. I love my life (I am not going anywhere, it's just something you think about)
I have the most amazing family and friends and am so thankful everyday
They support me, even when I want to do dumb stuff, but I know they are always worried about me and thinking about me. I am so lucky that they are all so much smarter than me and help me in so many ways that even they don't know about. I wouldn't be doing as well as I am if it wasn't for Krista, Eddie and Romy. They are the most incredible support system that anyone could ask for. From tolerating me when i'm cranky or down, to laughing at my stupid jokes, they are my foundation and what keeps me sane.
Ok, thats my two year journey in words. It's so therapeutic for me to write this stuff down. And as much as cancer can suck, it's taught me a ton.
Burt thank you so much for your vulnerability and openness here. I took a lot away from your reflections. So proud of you and so happy you are stable. Always here if you need anything.
You're an inspiration, Burt!!! Thank you for sharing--btw, i love those 2 songs so much!
Burt, Thanks for sharing, inspiring, motivating. articulating, aligning live, family and friends. Your role in our life is so critical to all the journeys ahead. Look forward enjoying it all. And thanks for jumping.
you made my day!!!!!!!!!!!!!!!!!!!!!! i loved watching you - so fantastic. love your embrace of life. way to go!!!!!!!!!!!!
37 years…I love you and I am honored to be your friend. Still troubled however, by the fact that your were helmet-less during your epic plunge. See you down some dusty, gravel trail…