Trying Everything

Trying Everything

In the spirit of trying to get help whereever I can… I got a suggestion from my social worker / therapist about a website that does crowd-funding for people going through medical hardships.   This is the profile I wrote for them.   I don’t know how any of it works, I just figure… if there’s help available, I will ask for it.   : )

I don’t know why this would be of any interest, I guess it’s just another version of my little story.   

Hello!

In 2019, I was diagnosed with ACC (Adenoid Cystic Carcenoma).  Every cancer diagnosis is earth shattering – but there are a few things that make an ACC diagnosis particularly difficult.  First, it’s a somewhat rare cancer, so the big sample sizes for research and development to develop or even determine the effectiveness of medications simply aren’t there. 

Secondly, you have a lot of medical professionals remind you that it’s rare.  Almost every person involved with my healing path has been compassionate and helpful, and what’s more, I have confidence in them.  I remind myself that these are people that just come in to work and live normal lives, but I expect them to be miracle workers.  So, to be reminded that they are unfamiliar with my particular type of cancer can really disrupt that hopeful (albeit, delusional) thought process.  There are some pieces of logic you have to just leave behind once you’re diagnosed with cancer. 

My surgery was all through my mouth.  I had a mass of a ping pong ball taken out of my left side of my upper jaw.  That’s missing teeth, voice changing, difficulty eating, sinus system completely blown up… it’s a lot.  After the surgery, we did radiation treatment and chemotherapy at the same time.  The thought was that I was young and strong and could stand up to the tough treatment, and we wanted to treat this cancer as aggressively as possible, since it is a cancer with a particularly high recurrence rate. 

Got through the treatments, it was not easy.  I don’t like to think about that frame of time.  For the sake of privacy I’m going to fast-forward through this phase a little bit.  Cancer is a disease that attacks your cells, but it also attacks your emotions and relationships, and the people around you.  This emotional toll is typically less reported, but just as damaging. 

In addition to some significant mental challenges, there were physical challenges as well.  I was going through speech therapy and working on getting a new mouth piece put together.  I also had some subsequent surgeries because pieces of the bone from the combination of surgery and radiation would fall off and work their way through my gums.  Sharp pieces of bone slowly working their way through the roof of your already sensitive mouth is as unpleasant as it sounds.  There were also a few scares on the scans, all of which proved to be non-issues medically, but again, the mental anguish over those calls and waiting for information and a few false positives and…. let’s just say it was not a relaxing time at all. 

After three years I requested a full body scan.  Previously, the scans had focused on the original affected area, my mouth.  I had done some reading about recurrence of ACC in the lungs.  I asked to have a full body scan and my doctor was able to get it approved.  It felt good to advocate for myself and get the testing I thought we needed.  The results felt really NOT good, as they found cancer in my lungs.  

For about a year now I’ve been taking Lenvima, which is a chemotherapy that is just taken orally every day.   AT first I was on a really high dose (24mg) and it was really rough.  I toughed it out for a few months and then they dropped it to 20, and then again to 14.  Now I feel like that is relaively managable.  Again, some real mental challenges here because we don’t have any solid studies showing that this particular treatment is effective in treating ACC, but my first doctor in St. Paul and my second opinion doc down at Mayo both agree that this is the best approach for right now.  

For the sake of brevity I’m going to skip over my transition to Mayo.  I still work with my team at Regions for my chemo and monitoring.  After a 2nd opinion on my cancer treatment, I was referred to a group to help rebuild my face.  I am currently scheduled for surgery in early April.  They will cut parts of my leg to harvest bone and veins to reconstruct the area in my face.  It’s both amazing and terrifying to think about.  I have a lot of confidence in my team.  Mayo is truly an incredible place.  It’s kind of my Oz right now, and like Dorothy, I’m hopeful that I can get put together and sent home.  

I am a small business owner.  I was fired from my job selling websites to lawyers in 2008, and if you’ll recall the job market in 2008 was, well… not great.   That rhymes if it’s helpful.  2008, job market not great.   Anyways… I decided to just keep on selling websites to lawyers.  I was fascinated with the web building process, and was also really frustrated with how difficult it was to just… get things done.  Big companies use big multi-faceted teams to build websites… which is fine, but it can feel like it takes a committee meeting to get a picture changed or a comma added, and that can be frustrating.   Well, my solution was to learn how to build websites, and thank goodness I did, because now in my company I am responsible for the entire process from sales to conceptualizing to getting the thing build to maintaining it afterwords.  I provide my clients a one-call solution that larger companies just can not duplicate.   

I’m proud of my business and until I was overrun with mental health challenges and the restraints cancer can put on your productivity, focus and calendar… it’s been tough.  The work that I once loved feels like a burden.  The passion and motivation that used to flood my being now comes in tiny drops and crumbs.  I am putting in an incredible amount of effort and feeling like I’m getting a mediocre, or even bad result.  

This exchange describes how I feel about a LOT of my life… putting in an extraordinary amount of effort, and getting very little back.   I work so hard on my business but make a fraction of the money that I used to make.  Personal relationships can feel challenging – I am afraid I am a burden to people, or that I remind them of their own frailty and weaknesses.  I try to think honestly about how people with cancer would make me feel before this all happened… I can’t say I would have rushed to befriend or do business with someone with cancer.   I feel ashamed to say that, but it’s honest.  

With the reconstruction surgery coming up, my time and ability to focus on work will likely continue to slow down and probably come to a complete halt for at least a few weeks.   I’m terrified of what this is going to do financially.   I’m simply not in a position to lose my income.   I also still have enough of a household income (my own and my wife’s) where I do not qualify for any type of traditional financial help.  My hope is that the reconstruction of my mouth will give me more confidence on the phone and a better ability to communicate on a daily basis.  Impaired speech makes phone calls and a number of other daily tasks difficult and overwhelming.  You have these moments… like when you’re calling to refill your antidepressant and just want the phone system at the pharmacy to recognize you saying the word “yes”.  Seems like a small thing, but it can produce some very big emotions.  Trust me, I’m speaking from real life experience here.   



Drawings & Words and Stuff

You’re gonna kill it!

Jason’s job is just to get up and murder people.   But I mean… everyone has those days where they aren’t very motivated.  That’s why

June 19th Update

As a lot of you know, I had a big surgery on March 11th.  I feel like it’s been long enough now that I can

Two Bodied Monster

Two Bodied Monster Yeah we’ve all heard of two-headed monsters.   I mean, let’s be honest, in the monster world, having two heads is sort of

Table of Contents