Kobro's Cancer Crew #8: It's all relative
Hey David,
Got up extra early today to write this update! Here's a 50 second compilation of some 4:30am morning hellos to you all (filmed on my walks to my favorite diner in Brooklyn).
This whole cancer thing has been lighting more of a fire in me -- I've been working 12-14 hr days and have never felt a deeper sense of urgency (and understanding of how scarce life is).
My last update covered everything through the second round of chemo (April 19th) so I'm a bit behind here. Going to get you caught up to today!
I've got some more juicy and philosophical updates around the corner...
My hair is definitely on it's way out, so I'll be doing a fun celebration / fundraiser around shaving my head (more on this in a future update).
Here's a picture of me bug fixing during chemo with brother Michael and Mikayla.
April 20th - April 27th
As a short refresher from the last update, my liver toxicity was much higher than anticipated (3x what they'd like to see) so the doctor decided to not give me the final immune therapy drug on April 19th (Round #2).
They also started me up on a much higher and consistent dose of steroids which has been... interesting.
I've been taking between 12mg and 8mg of Dexamethasone (sorta like Prednisone) every day for the past month.
There's a few side effects here, but I've been most hit with increased appetite, insomnia, and Mikayla says I've been "manic". I've gained around 10lbs and lookin a bit chunky, but that's okay.
If gaining 10 pounds, not sleeping well, losing your hair, and having some slight mood shifts sounds irritating, it's really super manageable compared to the pre-chemo days.
There's a lot I sorta skimmed over in earlier updates about how shitty things were from August '23 - March '24.
I'd run different experiments on myself every night, trying to do anything to get rest and fix the downward spiral in my health metrics.
One of experiment that worked around 30% of the time was lathering on clove oil which would would burn my skin and leave a rash, but would also numb me for around 20 minutes after the initial burn. This numb period was crucial. The hope was that I'd be able to fall asleep during this 20 minutes if I perfectly timed the sleeping drugs I was taking at the time. Staying asleep was another issue.
I kept a sleep journal to try and find the perfect combos -- here's part of it from December.
Six months of journaling and no consistent patterns were found.
As mentioned in past updates, doctors, therapist, etc. were convinced it was a Stress / OCD / mental thing going on.
I convinced myself it was also a mental thing.
As someone who's been diagnosed with OCD (I used to spit like 300 times a day as a kid, still have a motor tic, and have a few other tendencies), slowly realizing that your mental and physical health is out of your control is torture.
Finding out that I had cancer and a path forward was such a fucking relief.
Note, while I might not have been enjoying my day to day, I was still fulfilled and had support from Mikayla, family, and friends. There was never a question if I was going to get through it, I simply have way too many people behind me, and way too much to live for.
Point being: all things considered, life is fantastic right now and I'm feeling great. Hell if I put on another 20 lbs from steroids, slept 3 hours night, had a manic episode once a week, and had to cut off a hand, I'd still feel like I was thriving.
My dad always said that everything's relative and he's absolutely right.
I've never been happier, more grateful, and more excited for my future. God, life is good.
April 28th - May 5th
I'm trying to stay active. Here's a morning run from a few weeks back.
After I ran a 9:31 mile, my brother Mike said that Lymphoma runs a 9:20 mile, so I gotta keep training.
I decided to let my past allergist know we found out was was going on. His recommendation was to "Treat the underlying lymphoma".
What a brilliant remark. Genius.
This is the same doctor that said in January: "It's not a question of what this is, just a question of why the treatment isn't working" (he "knew" it was a form of eczema).
I thought for about 2 seconds about what it would take to sue him, and decided I wouldn't do that (although this does meet all the criteria for suability based on a quick search).
He did his best. It was an honest mistake. He had a hammer as an allergist and the nail was eczema. It's not that deep.
Mikayla's Instagram feed has been showing her these ads for shirts that say your boyfriend is balding. Meta probably knew I had cancer before I did (or any doctor for that matter).
Treatment #3 -- May 3rd
They also decided to remove the 4th drug again and give a lower dose of two of the other drugs (50% less of Vinblastine and 25% less of doxorubicin AKA Red death).
Surprisingly, I actually felt better after this chemo round than the last one. My doctor said this is primarily because I've taken about 2x as many steroids as the first time around.
Here's a picture of Dr. Handsome and another doctor who's visiting from Barcelona.
So serious. So handsome.
The nurse hit a valve in my vein, so she had to keep repositioning the needle.
The drug above is the nausea medicine and it's becoming a trigger. I've never consciously understood what a trigger was until now.
A few months ago I was like "oh weird, this injection leads to a weird taste in my mouth. Funny, I don't like it." It tastes like plastic banana with a hint of a low-tide beach.
Now I'm like "fuck fuck fuck I hate this" and need to get my reaction under control.
Thankfully it only lasts a few minutes.
It's sorta cool to witness a change like this in your reactions to things over such a short time period.
Mikayla's been a trooper as always. Still not sure how I got so lucky.
The next day (May 4th) Mik and I hosted our first Three Thirty Cafe Popup at our place in Brooklyn. We're just making a coffee shop at our place (and I'm the barista for the time being).
We can only have like 5-10 folks over at a time (minimize my exposure to people because I can't really go on trains or be in too many public areas). It's just for fun, good way to see the people we love in a safe place.
If you're in NYC and reading this, you will be invited soon! We're trying to have these at least once a month.
May 6th - May 12th
Unfortunately, my liver toxicity didn't improve quite enough, so they had me go get an ultrasound on my liver. Here's a video of what my liver sounds like if you are curious.
Part of the impression was that my veins are "unremarkable" which sorta feels like a let down (not really though, this is great news -- means there's no like tumors or other big issue with liver)
I've slept an average of 4:48 minutes week of 7th - 13th.
I can't drink alcohol because it gets processed the liver. So, I've casually started to explore non alcoholic beverages.
Phony Negronis are gross, I don't know why anyone ever thought that was a good idea.
I discovered this other non alcoholic beer-like drink and it's very good.
I've saved at least ~$150 / month by not getting a drink or two with dinner and I really don't miss it.
Don't think I'm gonna be forever sober, but probably couldn't hurt to become a monthly vs. a weekly drinker post chemo.
I'm also more susceptible to other cancers now, so health will need to become a bigger priority in my life after this whole thing is over.
May 13th - May 19th
We had our board meeting on May 14th for Intros AI.
We had a tough Q1, but we're on track for a much stronger second quarter. I locked down a few larger contract these past few weeks from folks like Sam Parr, our AI product is getting much better, and our team is in high spirits.
I really like my board -- they hold me accountable, are empathetic of my health situation, but also push me.
I've been really appreciative of capitalism recently. When someone invests $500,000 in you / your company, it really does lead to incentive alignment.
Treatment #4 -- May 17th
Now my liver enzymes are only 2x higher than the suggested range (vs. 3x), which is good to see! The extra drugs / steroids have been doing their thing.
This little rash popped up, forgot to mention it to the doctor, but doesn't look serious.
Mom doing her energy work on me before treatment.
This time they gave me all the drugs, but they cut down Decarbozine in half to see if it impacts my liver toxicity. They initially thought my liver levels were caused by the last drug Nivolumab, but they need to do a little trial and error here to be certain.
Should know more in ~a week or so.
I had a back spasm thing with the Nivolumab this time around, but it was much better than last time I tried the drug when I could hear my heart throb, chest tighten, breath slow, etc. So, good progress.
Here's a selfie after round 4 baby!
Sleep this week averaged a bit under 5 hours. Wanna try to get this up a tad, but whatever. I only have so many shits to give.
16 hours later, I took Mike for our 6th annual Bike ride.
- 2019: Boston → Montreal (~330 miles)
- 2020: Boston → New York (~350 miles)
- 2021: Boston → Cape Cod (~130 miles)
- 2022: Boston → Bar Harbor, Maine (~275 miles)
- 2023: Prague → Berlin (~215 miles) -- just me because Mike was nearly failing calc class.
- 2024: Prospect Park, Brooklyn (~4 miles).
Shout outs
4 years ago, Sean Stapleton and I were exploring Madrid and found these cookies made by these nuns.
Sean ended up being in Spain a few weeks ago, and set out to bring me those cookies as a gift.
Unfortunately the spot was closed, so he took a taxi miles out of the city to another nunnery that makes cookies. Sean also likes to document his journeys, here's a picture of his journey.
Not only did Sean end up securing the cookies, he then went to Ireland and dragged these along in his suitcase, all so he could bring them back to me in NYC. Sean is a legend, thank you.
Paige & Michael made my day with this response. My close friend Neiman and I were the MCs for their wedding a few years back. Now they have a baby on the way!
Grandma and Grandpa got us a subscription for monthly fruit deliveries for the next year. Delicious.
Thanks to Mom and Mike for driving down from Boston for the weekend!
And Mom for walking Tupperware aka Tuppawuppa aka Tupper aka tuptup aka T-dubs.
Thank you all for the endless love and support these past few months. We're well on our way to cancer free.
Lots more to do, but we're on the right path.
Love,
David