Kobro's Cancer Crew #10: Big updates!

WE'RE HALF WAY DONE WITH CHEMO!!!

Most of my ~45-50 scars from the 8 months of itching are starting to fade away (I counted them at one point, but lost track). Here's a few on my left foot that are looking good — free foot pic, your welcome.

My goal today is to catch you up on treatment and share some good news.

I'll give an update on the KCC vs. Limpus competition (from last update, KCC #9) sometime over the next few weeks here.

Refresher

To celebrate the 10th issue of Kobros' Cancer Crew, it's time for a mini overview of what we've covered along the way.

• KCC #1 (March) — Pre Diagnosis: 8 months of symptoms leading up to the diagnosis and how we caught it.
• KCC #2 (March) — Diagnosis: Stage 4 Lymphoma, bunch of tests.
• KCC #3 (April) — Treatment Hiccups: Pushed first day back because there were pending tests to confirm diagnosis— I met Dr. Handsome.
• KCC #4 (April) — Diagnosis confirmation: Thankfully determined it was Hodgkin Lymphoma.
• KCC #5 (April) — First Treatment day: Covering all the drugs and side effects.
• KCC #6 (April) — First few weeks of treatment: How things are going! + more drugs and side effects.
• KCC #7 (April - May) — Doctor miscommunication: My friend David Luongo flew in from Boston to support. Discovered some liver toxicity issues that impacts treatment a bit, doctors got confused.
• KCC #8 (May) — reflection on how great life is + everything is relative: Mom and brother Michael came up from Boston to visit. Michael and I still did our annual bike ride.
• KCC #9 (June) — KCC vs. Limpus: We're making our arch nemesis named Limpus who we will undoubtably beat in this fun battle of ours.
• KCC #10 (June) — the update today catching you up to speed on treatment & how things are going!

May 18th - 23rd

I upgraded my skateboard with a 1 Tupper-Power-Engine. It's a bit unreliable.

I've continued to lean into this 4-5am wake ups and get to work early. I now know the names of everyone who works the night shift at this 24hr diner.

May 23rd - May 27th

I visited family in Boston with Mikayla.

Mikayla saw some of the old skateboard boards I have that Dad wants to use for firewood.

Got to see one of my closest homies Matt Rich back in Boston. Peep this song of his, one of my favs.

Turns out chemo farts are really, really bad. And mom and dad are really really big drama queens. Here's a picture of mom and dad covering their noses after I let one loose (Mom with hands, dad with a nearby hand towel). Honestly, can't blame them.

May 30th

For the PET scan, they injected me with this "radioactive sugar". They also had me drink this other stuff to make it easier to detect the radioactive sugar.

The reason they do this is they want to see if the cancer cells are still alive based on how much sugar they uptake. The hope is that the uptake is much less than a few months back. even if tumors are still there, lower uptake would mean that a lot of the cells are dead.

I got a fun card that said I was radioactive again.

Sometimes I'll bruise around the infusions. This mixed with hair falling out makes me look a bit like crack head, but it's endearing.

May 31st — Treatment #5

Sam, Mike, Mom, and Dad all came in to visit.

Once we got to the hospital, we went over the results of the PET Scan that tells us how much cancer is left. Here's Doctor handsome.

Drum roll… Dr. Handsome isn't the only one looking good. My treatment results are also looking pretty damn good!

Before (Mid-March): Hard to see, but all of those spots were tumors around my heart, neck, etc. (one is ~10cm in diameter behind my heart)

After (as of May 30th): Pretty much gone!

Now, this just measures how "radioactive" the cancer is. Tumors are still there, but they are taking up MUCH less sugar than before which suggests they're mostly dead.

While we can't say that there isn't cancer left, things are looking good.

The radiologist had a typo that said something important actually didn't improve, but that was different than what the PET scan said. So, they made an amendment. Whatever, mistakes happen.

There's no way to know for sure if the cancer is gone, so we'll need to go through the rest of Chemo regardless (yay!).

Mini reflection

Thank fucking God for modern medicine. I asked ChatGPT life expectancy of stage 4 Hodgkin Lymphoma without treatment, and part of the response was: "It's usually measured in months not years."

So grateful to have the privilege to live in this time period, with smart people around me, in America, having the financial resources and support needed to get treatment, and to be getting treatment at a top hospital. The first chemo treatments were around the 1940s, and Lymphoma specific chemo treatments around the 1960s. Just 80-90 years ago these KCC updates would be more of a final hurrah.

Treatment continued…

After we got this big win, we looked at my blood tests to make a plan for Round 5.

My liver enzymes were highest they've been which is not good, so they decided to give me a much lower dose of Dacarbozine and remove the last immune therapy drug this time around.

Dad started telling the nurse jokes. Mom jumped in at one point saying: "No, you are not telling her this one". He proceeded to tell her this one. Here's a link to the 30 second video I snuck in — can't hear the full joke but you get the gist.

When Dad left the room, somehow Doctor Handsome came up between mom and the nurse.

Mom said: "And he's got that accent".

The nurse said: "I know right? I mean come on"

Could have sworn I saw the nurse drool a little bit. I was sat there awkwardly, nodding my head along.

Mikayla's Ankle & Tupperware

To make things more interesting, Mikayla got Ankle surgery. Turns out she's been running on a broken ankle from years of playing college soccer. She was wondering why it's been hurting recently, especially during her marathon a few months back.

Recovery wise, she'll be out of the cast in a few days but needs to be in a boot for another month or so. Hoping she can be running again by late fall!

Tupper got a haircut and now he looks like the squirrel from Ice Age.

I was asked to be on an AI Panel around NYC Tech week — had fun with it! I left right after and wore my mask (need to be careful because I'm immune deficient).

June 4th - June 13th

One nice thing about being a founder is that there's some cool events that VCs just throw money at. I got to go to this Masterchef event where we get paired up with a professional chef and competed in a cooking competition.

June 14th — Round 6

I gained another 7 pounds (largely from the drugs they have me on) — up to 222lbs (from typical 190lbs).

It's okay, I'll lose it soon enough. Here's an unflattering picture of me.

Round 6 was pretty smooth — blood tests who how the drugs (the ones that make me gain weight) are making my liver stuff better. And now we have more confidence that the immune therapy drug called nivolumab is likely the drug that's making my liver all funky.

I liked my nurse named John. Everything went fine, just a minor reaction to the last drug that made me stop the treatment for a few minutes.

Had some bugs (software bugs) pop up in the middle of treatment, so needed to jump on some calls.

Customers really appreciate it when I help them out while getting my infusions.

Mikayla posted this on here private story (on Instagram for my older family members here). Prepping myself for the "who you calling old?" replies.

Shout outs

The door guys at our apt. building all chipped in to get me a Celtics hat and some chocolate that I proceeded to inhale. They wrote a sweet card too!

Excited to share another update over the coming weeks! Limpus is going down :)

Love,
David