Cancer Crew - Complete Journey

The complete story of my cancer journey, from diagnosis to being cancer-free. All 18 posts in chronological order.

Kobro's Cancer Crew #1

Hey David, I'll be writing updates here to share stories and progress on my cancer treatment (Lymphoma). I'm calling it Kobro's Cancer Crew to keep things light.

If you're receiving this email, you are my family — either literally or like-family.

The first update here is about my past 8 months leading up to the diagnosis and how we caught it. I'll share some more context on the diagnosis and treatment soon (still waiting on a few tests).

My hope is this first update gives you background on why I'm so excited that we know what's going on. It's also such a relief to know that my lymphoma symptoms will be going away soon.

All that said, the past 8 months have been the hardest months I've had.


August '23

It was 3:30am on August 18th, 2023. I laid in bed, wide awake, itching myself. It felt like a consistent stream of new mosquito bites on my legs, arms, chest, and neck.

The next night, the itching returned. We changed blankets, washed our linens, stopped letting Tupperware (pictured below on top of Mikayla) near the bed, and aired out our room. No luck.

Tupperware on couch

Most of the itching was happening at night, so days were manageable.

I figured it would go away on its own.

September '23

It got worse. I started itching myself to the point of bleeding. Then, I'd itch myself more, ignoring the fact there was blood on my fingers.

Here's a few of the dozens of scabs that started to form.

Scabs from itching

I was conscious and aware of what was happening, and if I really tried, I could stop itching. Unfortunately, resisting the itches took all my attention, so it wore me down quick.

I went to see my Doctor (Primary Care). He thought it could be my Vyvance (for my ADD), so I took time off the drug.

Medical visit

Itching was just as bad.

We thought it could be allergies. So, I started taking some basic antihistamines like Zyrtech. Then I got prescribed stronger antihistamines like Hydroxyzine. Nothing seemed to help.

On the company side of things, we only had about 6 weeks of cash in the bank before I'd need to lay off the entire team. Fundraising was taking much longer than anticipated, and anxiety was growing.

I needed to stay focused at least 14-hours a day, so I started taking a double dose of Vyvance. I'd take one at 9:00am that would last until 4pm and another at 4pm that would last until 11:00pm. Weekends included.

October '23

It got worse. No longer was this just a nightly thing, it was a constant, 24/7 issue. I was keeping up Mikayla too with the sound and movement of my scratching.

I went to see my Doctor again. He sent me to get blood work and all of my labs came back healthy and normal.

I felt delusional.

I went to another doctor who prescribed me a steroid called Methylprednisolone. The steroids helped a bit, but it was only a bandaid. I started taking 40mg of Predisone (another type of steroid). Steroids weren't a sustainable approach, and the scratching continued.

I thought the itches may just be stress and/or OCD.

When I was 6-7 years old I was diagnosed with OCD because I would spit 300+ times a day. I was always spitting — on my shirt, my mom's couch, anything within range. So maybe this was another version of that? Hard to say. Some aspects were similar in the repetitive nature and the "compulsion", but this felt different.

On the bright side, we won our embarrassingly low division men's league. This was my one two-hour period I would consistently take off each week for my self. It helped keep me sane!

Men's league victory

November '23

I couldn't sleep, so I tried taking sleeping pills for the first time.

In the war of itching vs. sleeping pills, itching won by a long shot.

I tried:

  • Ambien (Zolpidem)
  • Ambien extended release
  • Halcion (Triazolam)
  • Mirtazapine (antidepressant)
  • I think a few others...

I tried to drink before bed to knock myself out.

THC gummies didn't help either.

I was still taking Vyvance in the morning, another Vyvance in the afternoon, and now sleeping pills at night.

Rashes started to appear.

Rashes

We laid off one of our employees.

My co-founder and I stopped paying ourselves, as we went further in debt.

My co-founder left the company.

There was 3 weeks of runway left before I had to lay everyone else off.

Thankfully, an angel investor puts $100k in last minute to keep the company alive a bit longer.

After a particularly intense work week, Mikayla came up to me: "We live together and you haven't acknowledged me in 6 days."

I started seeing a therapist.

December '23

After a handful of sessions, my therapist concluded that this was a form of OCD.

I "subconsciously created this itching as a distraction that I could control because so many of the situations in my life were either out of my control or in an unsteady place."

I thought this made some sense.

Night sweats began. I'd wake up at 3am-5am, covered in sweat.

Sleep was averaging somewhere in the 4-5 hour range. The chart below shows the sleep I needed compared to the sleep I was getting (WHOOP).

Sleep chart

Despite my co-founder leaving, I was able to get an investor to "verbally commit" $500,000. This was after ~115 "Nos" from funds and ~140 "Nos" from angels.

Then, I decided to negotiate better terms. I may not have any other options, but I still put my foot down.

Nothing was finalized, so most of December was dealing with lawyers and praying it wouldn't fall through. It was life or death for the company.

Right as the $500k was about to close, I got this email

Email screenshot

Thankfully, everything went through.

The largest motivator during this time was commitment to my word — I told employees, customers, investors, and myself that I would get us through this period.

January '24

I started off the year with Covid, followed up with another fever. I could care less though because Intros AI was alive, baby.

Tupperware went poop on our balcony. Then he stepped in the poop. When I let him inside, he was getting poop everywhere, so I needed to give him a bath in this metal tub and get the poop off of him.

Tupperware bath

I started taking a new drug called Sertraline that treats OCD. It's also an anti-depressant (gotta love a good two-fur).

I trained to Boston to meet with a top immunologist.

They confirm after ~40 mini injections that I don't have any serious allergies.

Allergy test
Another medical image

The doctor diagnosed me with some form of Eczema (which I guess can cause itches without there being any rashes). I started using ointments and taking 4x the recommended dose of antihistamines.

The doctor said: "It's not a question of what you have, it's just a question of why the antihistamines and other treatments you've had aren't working"

February '24

I got a cyst on my neck, so I went to see urgent care (didn't want to make a whole appointment).

Neck cyst

While talking to the Doctor, I mentioned a swollen lump under my right armpit that I noticed a few weeks prior. He says it was my lymph nodes and sometimes they get swollen. Usually they go down, but "go get it checked out if they stay there".

Then I saw a dermatologies about the bumps and the itching. She said the itching would likely go away and I should "just wait it out". As for the bumps she said, "keep an eye on em, but guessing they'll shrink soon enough."

I closed a $100k check, and then another $150k check to close out the fundraising round, totaling $1.25M. We went from a 12 person team down to 2 over the course of 18 months, and now it was time to build it back up.

Fundraising success

I hired a new team member named Daniel, and we established the first "Intros AI Office" 🤝

New office

March '24

The bump in my armpit grew about 3x larger than it was before. So I sent my doctor a note (no response).

Mom and Dad (thankfully a nurse and doctor) were like, "get an appointment today, this could be lymphoma".

The Nurse I saw sent me to get an ultra sound (see the big two lumps on the screen -- they shouldn't be there).

Ultrasound

The doctor wasn't sure what it was, but he ordered a biopsy for the following week. I told them my parents concern and he replied: "It could be lymphoma, but we're not sure yet. It could be a range of things."

I look up lymphoma. One of the most common symptoms was "Severe itching".

I asked ChatGPT for some more details: "The exact mechanism why lymphoma causes itching is not fully understood, but it is believed to be related to the release of chemicals such as cytokines from the cancer cells. These chemicals can stimulate nerve endings in the skin, leading to itching. Additionally, the body's immune response to the lymphoma may also play a role in causing or exacerbating the itching.

In Hodgkin lymphoma, severe itching is one of the B symptoms, which also include fever and night sweats. These symptoms are considered significant in the diagnosis and staging of the disease. Itching in lymphoma can be widespread and severe, significantly impacting the quality of life of those affected."


This catches us up to early March!

We'll pick up here sometime in the next week or so with a fresh update on the Biopsy, CT Scan, and Diagnosis.

Before the last section here, just want to say I'm so grateful that we know what's going on. I'm not going insane and I don't need to live with this itchiness, sleeping pills, double Vyvance, quadruple antihistamines, double prednisone, ointments, and everything else from the past 8 months.

There is a well traveled path ahead, with a clear timeline, and a family (you) who will support me.

I can't emphasize this enough -- Thank you Mikayla for being my rock through all of this. Mom and Dad, can't thank you enough for your support either. My two brothers (Michael and Sam) weren't so bad. For my friends who've been there over the past months (and years), thank you.

Some special shout outs:

  • David Luongo for being by my side since day one.
  • Matt Rich for the random calls and Georges breakfast.
  • Andrew Awad for being there to shoot the shit and a great cup of coffee.
  • Neiman Mathew for the walks, talks, advice, and perspectives.
  • Michael Ioffe for the top notch meals and jamming on the struggles we've chose.
  • Ron Miasnik for always being a call away (for over a decade now).
  • Philip Ruffini for researching doctors and trying to get me some top notch care. Mikayla feels threatened by you because of how far you'd go to help.
  • Femi Adebogun for dropping everything late night on a Saturday to come have a beer with me the day I found out it was cancer (before we knew it was the more treatable kind).
  • Bradley Tramer for always seeing a different angle and the painful laughs.
  • Dar & Megan for our group chat and a couch to crash on.
  • Devin for her healing magic and knowing what to say.
  • Sam Ungerleider for the unconditional support and Paul's burgers.
  • Gideon Roell for all the good luck and shenanigans since 2nd grade.
  • Tom Cole for getting his butt down to NYC to visit me soon.
  • Gary Sheng for taking his birthday to talk about cancer.
  • Nisreen for talking about the dark stuff & the memes.
  • Jonathan Pierre for all the prayers.
  • Kat for coming from the Bronx in order to scare me shitless on my birthday.
  • My teammates Peyton & Daniel for being the most supportive biz partners I could ask for.
  • My cousins Andrew, Kyle, Amanda, Cory, Anna, and Dana for the endless support and hype up.
  • My aunt Nancy and Sharon, as well as uncles David and Steven, for always being there (and for taking me and Mikayla out for a fancy dinner on my birthday).

Hopefully Chemo isn't too bad (knocking on wood as I write this), but either way we'll get through this.

Part of Kobro's Cancer Crew is featured below!

Cancer Crew

Expect another update over the next week or so!

I'll leave you with some of the funniest comments I've heard so far:

  1. "Well now you might be able to meet John Cena" - Brother Sam
  2. "You're balding anyways" - Dad & Mikayla (and everyone, this one is too easy)
  3. Me: "it's not that bad, getting used to the idea" Brother Sam: "Oh, so you'd say it's growing on you?"
  4. "You better not forget to send out any of those cancer updates." - Andrew

With Love,
David aka Kobro

Kobro's Cancer Crew #2: Diagnosis

My last update covered August '23 to February '24, when we finally started suspecting Lymphoma. This update covers the diagnosis.

Side note -- I've received so many words of encouragement from friends and family who read the last update. Thank you <3

Short refresher on where we left off...

Feb 29th '24

  • The bump in my armpit grew to about 2 inches in diameter.
  • The doctor said "It could be lymphoma, but we're not sure yet. It could be a range of things."
Medical scan

I look up lymphoma.

One of the most common symptoms was "Severe itching".

More on why in the previous update.


I schedule a biopsy so we can figure out what's going on here.

Biopsy schedule

March 1st

The lump on my right side gets bigger. It starts pressing against my nerves, causing my right hand and elbow to tingle with occasional pains.

Medical diagram

My monthly Whoop report (health tracker on my wrist) comes in.

I was excited to see my Resting Heart Rate was starting to creep back down for the first time in 6 months.

Whoop report

March 2nd

Mikayla was running her first marathon that weekend down in South Carolina, so I flew down to support. She crushed it.

Marathon support

March 3rd

Tupper also joined to cheer Mikayla on.

Tupper cheering

March 6th

I went to New York Imaging associates for my biopsy.

NY Imaging

The Doctor put this large needle in my right armpit to get a sample of the mass. He tells me his daughter also went to University of Michigan, seemed like a nice guy.

After we wrap up, he tells me that lymph node tests always take a long time (week minimum, sometimes longer).

He set me up for a blood test, as those results come back quickly.

March 7th

My blood test results were in.

Sedimentation rate was ~5x higher than it should be (indicating high inflammation)

Blood test results

My Liver Enzymes were also off -- elevated levels of AST and ALT can indicate liver damage (or inflammation).

Liver enzyme results

While these results didn't mean I had cancer, they were clear signs that something was wrong.

March 8th

Tupper eats my facemask, so now I have to deal with light when waking up.

Tupper with facemask

March 9th

I schedule a Chest CT Scan for Saturday morning, so we could see if there were tumors in other places. We didn't want to wait until the biopsy results (could be 1-2 weeks).

CT Scan schedule

I trek over to the Upper East Side. Upon arrival, they tell me they canceled my appointment (without notifying me). Apparently there's a "war" between United Healthcare and Mount Sinai Hospital. United Healthcare stopped accepting Mount Sinai patients as of March 1st.

I was the 3rd patient they had to turn away that morning.

Thankfully, the ER took me, but needed to prioritize patients with higher risk (understandable). During the 5 hour wait, I saw dozens of patients roll by on their deathbeds. I remember thinking: "Thank God I was young and (generally) healthy."

Hospital waiting

Around 30 minutes after my CT scan, a Physician's Assistant and a Doctor approach me cautiously. They ask me if we can find a private place to talk and bring me into a side room.

I forget exactly what they said, but it was something along the lines of "You have cancer".

They shared the report.

Cancer report

Technically they couldn't guarantee it's cancer until the biopsy, but they pointed out a tumor the size of an orange (little bigger -- 4 inches in diameter) behind my heart.

Tumor scan

We pulled up this birds-eye view of the CT scan. The thing in the middle there is a tumor.

CT scan view

The scariest part is we weren't sure what type of cancer/lymphoma was. If it was Non-Hodgkins, the outcome didn't look so good.

I call Mikayla to tell her the news. She doesn't take it particularly well ... a few days later she shares how that was the worst day of her life.

That night I was going to meet up with my cousin Dana and grab a beer with my buddy Femi. They came over to support instead!

Friends support

March 11th

I tell some of my team members that I almost certainly have cancer, we just don't know what type yet.

I kept the spirits high, told some cancer jokers.

Team meeting

I go to my PCP and he says we need to wait for biopsy results before next steps. I ask if he can try and expedite and he says "I'll see what I can do".

Then, he leaves, and a scribe comes in and asks: "The Doctor asked me to check in on your biopsy, do you know what he wants to check in on?"

It was clear my doctor was not going to try and get this expedited.

I am my mother's son, so I walk to the Biopsy place, and get the doctor who took my biopsy to call the labs and gets them to expedite it.

2 hours later we have the results.

Biopsy results

Phew. Classic Hodgkin Lymphoma.

There's roughly a 64% 5-year survival with Non-Hodgkin (assuming stage 4). With Classic Hodgkin it jumps to ~75% (also assuming stage 4).

March 12th

This comes out of my nose (made small because sorta gross).

Medical image

I bike to work for the first day of the season.

Biking to work

March 13th

I spoke about startups to a UMich club.

UMich presentation

March 14th (my birthday)

Aunt Sharon and Aunt Nancy took me and Mikayla out to dinner for my birthday (pie day). We went to Francie in Brooklyn. Thank you Aunt Sharon and Aunt Nancy!

Birthday dinner

Once we get home, Mikayla told me there's a gift in the top of our closet. I'm thinking this gift could be like lingerie or something.

Instead, I open the door to our bed room, and a mob of people jump out at me. It was a genuinely terrifying experience.

Surprise party

Everyone pictured were among the first people I shared the news with (the core of Kobro's Cancer Crew).

March 15th

My Mom drove up from Boston to go to the first Oncology appointment with me and Mikayla.

The Doctor seems like a badass. If I was Lymphoma, I'd be worried.

Doctor meeting

Dr. Steiner says I shouldn't go on my ski trip to Jackson hole that weekend, so we started off on the wrong foot.

Then he had the nerve to tell me that I can't do dangerous things like skateboard; if I got injured, healing would be tricky (Chemo sets your immune system back).

Despite his ~unreasonable~ safety comments, I could tell he knew cancer inside and out. He broke down all of our questions and concerns in a clear and thoughtful way. It doesn't hurt that he's at one of the top cancer hospitals in the world (MSK). Here's his background if you are curious! If I die (I won't), blame this man.

The next step was to take a few more tests like a PET scan to determine the stage I'm at. From there, we could put together a treatment plan.

After my appointment, I needed to get lung and heart tests to see if I could handle the treatment (at least I think this is why I needed to get the tests, but forget if there were other reasons).

Medical tests

Turns out my lungs are top tier. Heart's not too shabby either.

Test results

Mom, Nikki (Mom's friend), Mikayla and I grab some dinner.

Strange photo, I know. Mom's mid bite and I don't know what my other hand's doing (it's giving Voldemort).

Dinner photo

March 16th

My competitive side got the better of me. Despite my doctor's concerns (or rather, because of them) I went to the skate park to learn a new trick.

I figured out how to do a switch shove on a half pipe. Just a few minor falls.

March 17th

Mikayla runs a half marathon a few weeks after her full marathon. Running calms her.

Mikayla running

March 18th

Time for my PET scan! I couldn't eat 6 hours beforehand, so I was a bit hangry. For those of you who know my hanger, it wasn't pretty.

When I arrived, they injected me with this radioactive stuff so the lymphoma shows up on the scan.

I got a card that says I'm radioactive "Incase anyone asks".

Radioactive card

March 19th

We had a followup with Dr. Steiner to discuss the PET scan results.

During our call, the report from the PET scan came in (yes, as we were speaking to him).

This screenshot below is the anticipation from Mikayla and my Mom while the Doctor read the report.

Waiting for results

The Doctor pulls up this screen, and says "All the grey area above the kidneys and excluding the brain is Lymphoma".

Yes, that means everything in the the middle, on my side, neck, etc.

PET scan results

Thankfully, the Lymphoma was only above the diaphragm. This typically means that it would be classified as stage 2 (although in my case, "stage 2 bulky" because of how large the masses are). This means it would be treated like stage 3 or 4.

We take a closer look at the scan.

We see some Lymphoma that's creeped outside of the lymph nodes, into the sternum and chest wall.

Detailed scan

Once the Lymphoma goes beyond your lymph nodes, the stage automatically jumps to stage 4.

That said, the doctor wanted another option. He said, "thankfully, the prognosis is still very good. I'm going to run this by my team of oncologists tomorrow to confirm."

The treatment is pretty much the same either way at this stage, so I wasn't worried.

My cousin Dana sends me a tortilla blanket that Mikayla stole. Tupper ate a hole out of it.

Tortilla blanket

March 20th

One risk of chemo is that I may not be able to have kids afterwards (very low risk).

So, I needed to head on over the the fertility clinic.

The nurse handed me this cup and told me to "produce".

Medical cup

Then she said:

"By the way, there's porn in that top drawer" and leaves the room.

I had to verify that she was kidding. She wasn't.

I wondered who funds the doctor office 80's porn. Is it donated? Is it on their annual expenses?

After a few trips to the clinic, we have enough "viles" to make plenty of little David's and Mikayla's. They made me sign a document that gives Mikayla ownership over the sperm in case I die.

March 22nd

After speaking with other oncologists and radiologists, the Doctor confirms I have stage 4 Lymphoma.

In my humble opinion, stage 4 sounds far cooler than the other stages, so why not.
The other benefit stage 4 means insurance companies are usually a bit more lenient with covering different chemo drugs.

March 23rd - March 29th

Itching and night sweats continue until I begin treatment on the 29th. There's a good chance my symptoms will start to go away once, but hard to say!


There's still a few pending factors with treatment options, but I should know more towards the end of the week.

Feel free to just reply to this email if anything comes to mind or if you have any questions -- I'm spending time on these so I can keep you in the loop, so I always love a little response.

My next update will be discussing the treatment and the roadmap ahead.

Love,
David (aka Kobro, hence Kobro's Cancer Crew)

Kobro's Cancer Crew #3: Treatment Hiccups

Hi David,

Our first update covered the past 8 months and the last update covered how we discovered the lymphoma (and the diagnosis).

As a refresher for where we left off:

March 22nd: "After speaking with other oncologists and radiologists, the Doctor confirms I have stage 4 Lymphoma. In my humble opinion, stage 4 sounds far cooler than the other stages, so why not. The other benefit stage 4 means insurance companies are usually a bit more lenient with covering different chemo drugs."

March 23rd - March 29: "Itching and night sweats continue until I begin treatment on the 29th. There's a good chance my symptoms will start to go away once, but hard to say!"

My first day of treatment was supposed to be on Friday, March 29th.

It turns out that we'll need wait until Tuesday, April 2nd to begin . . . this update covers the treatment delay and plan for next week.

Side note -- I continued to receive love and support from all of you. Thank you for making this process a (relative) piece of cake!


March 29th

I start the day off with a $115 parking ticket.

Parking ticket

The ticket's for 11:36am, but I paid for parking until 11:53am.

So now I need to dispute this thing because the parking person must have misread the receipt.

Parking receipt

We get to the hospital for my first day of chemo treatment.

They need to draw blood to see how things are going. Usually they use my arm veins, but instead they use my hand vein so they can keep my arms all fresh and juicy for the chemo.

Blood draw

Thankfully, there's no big surprises.

Although, my ALT levels are pretty damn high (jumped from 72 U/L to 100 U/L), so it's something to keep a close eye on.

ALT levels

ALT levels in your blood can increase when your liver is damaged, so it's often used to assess your liver health.

Liver health chart

The doctor's ~40 min behind schedule. Thankfully we have a top-notch view.

Hospital view

Dr. Handsome Raphael Steiner walks into the office.

We're calling him Dr. Handsome because multiple friends have commented on how handsome he is.

I can't disagree, look at that beard.

Dr. Steiner

Handsome says we have an issue; they still haven't been able to analyze the biopsy sample!

Here's what happened... New York Imaging Associates had a Doctor take the sample and then send it to Mount Sinai Labs. Mount Sinai analyzed the sample and diagnosed this as Classic Hodgkin Lymphoma.

Biopsy process

MSK (my hospital for the cancer treatment) likes to redo the biopsy analysis because there's always a chance that the biopsy is wrong.

The issue is they haven't completed this process yet 🙄.

The process for double checking requires that MSK gets the sample and labs from the previous hospital and then gives the sample to Hematology at MSK (Lymphoma is a blood cancer and Hematology is the study of blood and blood disorders). From there it can take a few days to get the results.

The sample is now at the MSK labs, so we're waiting on MSK Hematology.

While Dr. Handsome has been giving strong nudges to get the results, we still don't have them.

But wait, what else could this be? What possibly could the fancy MSK Hematologists find that Mt. Sinai didn't

According to Dr. Steiner, there's 2 other potential scenarios:

I have Non Hodgkins Primary Mediastinal B-Cell Lymphoma (PMBCL for short)

  • Characterized by its origin in the mediastinum (Your mediastinum is a space in your chest that holds your heart and other important structures).
  • My largest tumor is around here, so it's potentially fitting.

I have Mediastinal (Gray Zone) Lymphoma, or Gray Zone Lymphoma (GZL):

  • Often has overlap between PMBCL (above) and Classical Hodgkin Lymphoma (what we think I have as of now), particularly in the mediastinum.

From initial research, survival rates for these at stage 4 are somewhere in the 60-75% range (still good, but not nearly as good as Hodkin Lymphoma).


So, Dr. Steiner (the handsome one) said we have 2 options:

  1. We move forward with Chemo today.
  2. We wait until we have the confirmation back from MSK Hematology that this is Hodgkins Lymphoma.

Case 1: We move forward with Chemo today (on March 29th) and treat this as Classic Hodgkin Lymphoma

IN THE CASE WE ARE RIGHT -- THAT THIS IS CLASSIC HODKIN LYMPHOMA

Pros:

  • The emotional relief of getting started. I was all amped up, ready for this Golden Elixir (my mom calls it this to get over the fact that it's pretty much just poison).
  • My symptoms would go away sooner.
  • My cancer is pretty late stage, so the sooner we start the better.
  • We end on Friday, September 13th. LOVE that the last day would be on Friday the 13th.

Cons:

  • No Cons. It'd be great to start if the diagnosis is right.

IN THE CASE THAT WE'RE WRONG -- THAT THIS IS ACTUALLY PMBCL OR GREY ZONE LYMPHOMA

Pros:

  • No pros.

Cons:

  • PMBCL and Grey Zone have different treatments than Classic Hodgkins Lymphoma. This dose of chemo might be unnecessary.
  • Extra chemicals -- it's likely best to avoid unnecessary chemo in your system.
  • We'd need to wait at least 2 weeks for the chemo to leave my system before starting on the new treatment
  • It could affect my upcoming biopsy if I needed one more to check the type of lymphoma if it's still unknown. This chemo round could alter the lymphoma so it could be more difficult to get an accurate reading on the cells.
  • Dr. Handsom Steiner could be liable or at least it would look very bad on him and the hospital.

Case 2: Wait until we have the Biopsy results back before starting Chemo

IN THE CASE WE ARE RIGHT -- THAT THIS IS CLASSIC HODKIN LYMPHOMA

Pros:

  • No Pros, better to get started early if we're right.

Cons:

  • We wait an extra few days (at least).
  • I have to deal with itching myself to the point of bleeding and night sweats a bit longer.
  • The cancer could grow a tiny bit.
  • The last day would be Friday September 20th, which just means this whole thing needs to take longer.

IN THE CASE THAT WE'RE WRONG -- THAT THIS IS ACTUALLY PMBCL OR GREY ZONE LYMPHOMA

Pros:

  • Phew, we avoid everything that could go wrong if we moved forward with the wrong treatment.

Cons:

  • No cons.

If this was an economic decision, I would have hands down gone for moving forward with case 1 because the chances of the initial biopsy being wrong is very low (we're talking 1-5%).

  • Let's say I have this thing called "Pain and irritation points". Each point is bad.
  • I'd accumulate ~ 5 Pain and irritation points from having to wait longer for chemo to start.
  • I'd accumulate ~100 Pain and irritation points if we moved forward with the wrong treatment.

If there's a 2% chance of the biopsy results being wrong, then we're looking at 5 pain points vs. 2 pain points (2% of 100), so moving forward on the chemo today would be smart.

HOWEVER! I am not an economy. I am a human and that means I have a bunch of relationships and other people to consider here. It's also not good to gamble with health -- something that Mikayla reminded me the other day when I considered signing up for a 400 mile bike trip in July (peak chemo). Don't worry, I'm not going to do this.

I could also tell that Dr. Steiner would be much more comfortable with waiting until we had the biopsy results back. So, looks like we'll have to wait until Tuesday!


I force Mom, Mikayla, and my buddy Andrew to pose for a picture. The lucky pharmacist also jumps in.

Group photo

This is Abby, she handles all scheduling and is training to be a nurse.

Abby

We walk by a bar named Murphy's law no the way back to the car and Mom says she could use a shot there.

Murphy's law bar

We make a pizza pit stop on the way back to the car.

Pizza stop

Sorry Mom and Mikayla, I know this may not be the most flattering of photos.

Here's another where you both have your tongues out.

Tongue out photo

On the way back home, we stop to get gas. I almost get a perfectly round number for both the dollar amount and gallons, something I've only been able to achieve once in my life.

Gas receipt

The last time this happened was December 11th, 2020 at 8:35pm (source: snapchat camera roll)

Previous gas receipt

When we get home, it turns out that Tupperware ate an entire 1/3rd of our TV remote.

Eaten remote

Here's Mikayla "turning on the TV" where the button used to be.

Mikayla with remote

This brings us to the last days of March.

I thought about pulling a crazy april fools joke here, but I can't think of an appropriate ones:

"I have 3 weeks to live -- April fools!"

"I don't have cancer at all! This has just been one month-long april fools! Totally got you."

I'm already starting to write my next update that goes into the treatment plan, so stay tuned. As always, reach out with any thoughts, comments, jokes, etc. I really do enjoy hearing any words of encouragement or just a little emoji response.

Love,
David

Kobro's Cancer Crew #4: Good news!

keeping this update short. We heard back from MSK Hematology and they confirmed this is Classic Hodgkin Lymphoma.
No need to read beyond that first bullet point, I am unsure what the rest of it means.
 
I told Mikayla we had bad news as an April fools joke, but I took it back and apologized. Not appropriate...
 
I'm writing this update from the hospital -- first day of chemo is today! I'll send over a longer treatment update later this week / weekend.
 
In the meantime, big shout out to those who've sent along some goodies:
Aunt Sharon hit me up with ~7lbs of chocolate chip cookies.
Mikayla bought me some toothpaste, new toothbrushes, and dry mouth stuff because apparently chemo messes with your mouth sensitivity and what not.
David Luongo bought me a Grateful Dead hat (we've gone to a handful of Dead concerts together).
Philip Ruffini sent over some nose strips to help with sleeping.
 
Thank you all for the continued support <3 I'll keep you updated!
 
Love,
David

Kobro's Cancer Crew #5: Treatment Day

Hey David, our last update covered some good news. I have Classic Hodgkin's Lymphoma which is the most curable type. It's still stage 4, but tomato tomaahto.

 

This update covers my first day of treatment and all the drugs involved.

 

Fun aside -- I received a threat the other day.

In my last update, I shared the mean april fools joke I pulled on Mikayla (saying that the diagnosis was worse than it actually is). Aunt Nancy told me:

"And if you ever do that to Mikayla again, no more cookies for you!!!"

April 2nd

8:00am

Dr. Handsome Raphael Steiner and I have a virtual checkin to make sure I'm ready to go.

 

We discuss how my symptoms have gotten worse over the past few weeks.

It's the first time I've had shortness of breath and consistent coughing. He comments: "That's what happens when you have a tumor pressing against your airways."

He pulls up some pictures as a reminder.

Tumor scan

Thanks Doc, but the pictures weren't necessary ... I can feel it fine enough.

 

I'm officially off Zoloft! (Antidepressent / OCD drug).

You might remember from a previous update how we thought my itching could be OCD. I started on Zoloft back in January to treat the OCD, but then we learned it was cancer causing the itching.

Since then, I started weening off the Zoloft, and now we're antidepressent-free.

 

Finally, we get into business: I ask logistically how I can get work done during chemo - is there a desk or something? Chemo takes around 4 hours and these are precious working hours.

He says: "I'm not saying your work isn't important, but in this case ...?" He does one of those "balancing a scale" hand motions to signify that health is more important.

I told him that I'd go crazy if I couldn't work, so health and work are related to each other.

He shrugged with a "to each their own" type of look and said they have a mini desk I can use.

Mini desk

 

Tupperware takes a pen off my desk and starts chewing on it. I tell him "No" and take it away.

Doctor Handsome says, "Maybe he's a writer".

So now he's funny too 🙄.

12:00pm

Mom & Dad fly in for the day. It's the first time Dad sees our apartment and he's impressed (primarily because of Mikayla's design choices).

Apartment overview
Living room

 

I have a few work calls that morning, so I get those out of the way before we head to the hospital.

2:00pm

Once we get there, I need to get my blood drawn (they do this before each infusion).

Blood draw

40 second video clip -- you can tell they're keeping things together.

 

We end up needing to wait an extra 2 hours because there's not enough nurses on duty. We're all "itching" to get this over with ;)

Finally, one of the care coordinators leads us to our room.

Treatment room

5:00pm

My company's advisor and I had a call, but he told me to get back to treatment.

Finally, the nurse comes in, almost out of breath. She stumbles on a few words and says: "Sorry, my brain isn't working, just got back from lunch".

Nurse rushing

First of all, it's 5:00pm ... that's an early dinner, not a lunch.

Second, those are not the words you want to hear before your first round of chemo.

 

It turned out she's a fantastic nurse, but I wouldn't say it was the most reassuring first impression.

My Dad (a doctor) shows the nurse this pen.

Pen inspection

She asks my dad what type of doctor he is. He responds (for the 10,000th time): "A good one".

5:15pm

Now, quick aside before we get into the treatment: let's talk about why I need to do chemo vs. other options out there.

Right off the bat, radiation is out of the question. Since I have a large tumor bigger than an orange right next to my heart (All that bright area is Lymphoma), it would be too risky to use radiation.

PET scan

Surgery also wouldn't make a difference, because there's a whole lot of cancer.

With radiation & surgery off the table it leaves us with ... drum roll please... Chemo!

Types of Chemo

It turns out there's around 50 "mainstream" chemo drugs. So it's all about making the right "chemo cocktail" as they say.

Some chemo drugs make you lose your hair, others make everything taste like metal, and yet others make your pee turn red. Side effects are the name of the game.

Generally speaking, stage 3-4 Hodgkins Lymphoma has at least 3 of the same chemo drugs with one wildcard based on the stage (and what insurance is willing to cover).

We'll cover each of these drugs in the order I took them.

5:30pm

The first two things I got put in me weren't chemo, but pre-treatment nausea medicine.

The first one felt cold in my veins -- it just came out of the fridge apparently

Cold IV

The second one was crazy.

About 5 seconds after she started, I tasted a banana, but like a plastic banana.

Banana taste

 

A few minutes later, things got serious. Chemo time.

My nurse put on a large gown of sorts to protect her against the potential exposure.

Protective gown

 

Mikayla started playing Eye of The Tiger (our friend Megan had the initial idea). Dad closed the door out of embarrassment

Here's the awkward 13-second clip.

Doxorubicin (AKA Red Death -- not kidding this is the nickname)

Why I need this: Slows or stops the growth of cancer cells by blocking an enzyme that they need to divide and grow. It's considered one of the strongest drugs for breast cancer as well.

Fun fact: Doxorubicin is also known as "Red Death" or "The Red Devil" because it is a clear bright red color. It will turn my pee, sweat and tears red so I need to make sure to wear dark shirts (it stains).

Potential side effects:

  • Fatigue
  • Alopecia
  • Nausea and vomiting
  • Oral sores
  • Bone marrow suppression and an increased risk of secondary malignancy diagnoses may occur.
Red IV
Red staining

Part of the procedure is they need another nurse to come in and verify that they're administering the correct drug into the correct patient.

Imagine how bad that would be if someone just accidentally got a dose of chemo. I asked if this happened before and they didn't have a clear answer. Not on their watch though!

Double checking

 

Mom and Dad are having a blast.

Parents smiling

 

This one felt pretty normal -- I didn't taste banana or anything out of the ordinary.

Normal infusion

That red color is the drug, not my blood. Sorta spooky looking.

 

While the Red Death was doing it's thing, I was given ice to chew on.

By cooling down your mouth, apparently it keeps the chemo away from that area during the treatment. It also numbs the mouth and prevents a metallic taste.

Ice chips

 

One down, three to go!

6:00pm

Next up we had Vinblastine. Thankfully this one does not have a nickname like human destroyer or unforgiving demon.

 

Why I need this: Blocks cell growth by stopping mitosis (cell division).

 

Fun fact: Vinblastine is the salt of an alkaloid extracted from Vinca rosea Linn., a common flowering herb known as the periwinkle.

 

Potential side effects:

  • High blood pressure which may cause headaches, dizziness, blurred vision.
  • Infection, especially when white blood cell count is low.
  • Anemia which may cause tiredness, or may require transfusion.
  • Bruising, bleeding.
  • Pain in the bones, jaw, and at the tumor.
  • Constipation.
  • Tiredness.
  • Hair loss.
Vinblastine IV

I'm losing my hair anyways, so not a big deal on the hair loss.

This one was easy money, took like 10 minutes.

Quick infusion

 

Look at me, vibing.

Selfie vibing

 

6:15pm

The third one wasn't quite as easy -- they warned this one could "sting my veins".

 

Dacarbazine

 

Why I need this: Used to treat cancer of the lymph system (and interferes with the growth of cancer cells).

 

Fun fact: They tested this drug on rats and rabbits back in 2014. They saw that offspring of female rats had dozens of abnormalities. If I were pregnant, this drug would definitely not be safe to take.

 

Potential side effects:

  • Redness, pain, or swelling at place of injection
  • Black, tarry stools
  • Blood in urine or stools
  • Cough or hoarseness, accompanied by fever or chills
  • Fever or chills
  • Lower back or side pain, accompanied by fever or chills
  • Painful or difficult urination, accompanied by fever or chills
  • Pinpoint red spots on skin
  • Unusual bleeding or bruising
Dacarbazine infusion

This one takes a full hour for some reason.

Dad and Mom needed to head out and catch their plane back to Boston.

Empty room Just me and Mikayla to wrap up the night

 

7:30pm

The last treatment of the day was the immune therapy.

 

Option 1: Rituximab (approved by FDA in 1997):

  • How it works: Targets the CD20 protein on B cells in lymphoma. By binding to CD20, Rituximab helps the immune system to recognize and destroy these cells.

Study: Overall Survival with Brentuximab Vedotin in Stage III or IV Hodgkin's Lymphoma

  • 1300 patients received 6 months of treatment.
  • 664 patients got Rituximab.
  • 670 patients got Brentuximab.
  • Rituximab had a 89.4% 6-year overall survival estimate.
  • Brentuximab had a 93.9% 6-year overall survival estimate.

Study Chart

Study chart

 

Option 2: Brentuximab (approved by FDA in 2011):

  • How it works: Targets CD30, a protein on the surface of lymphoma cells. This allows more direct delivery of chemotherapy to the cancer cells, reducing the impact on healthy cells (and potentially leading to fewer side effects compared to Rituximab).
  • Side Effects: It can cause some of the usual chemo side effects, like tiredness and lower blood cell counts, but it's more focused so it might be easier on you than traditional chemo.

 

Option 3: Nivolumab (approved by FDA in 2016):

  • How it works: It blocks PD-1, a trick cancer cells use to hide from your immune system. By blocking PD-1, Nivolumab makes the cancer cells visible again, so your immune system can attack them.
  • Side Effects: It can rev up your immune system too much, causing inflammation in parts of the body.

 

Study: SWOG S1826, a randomized study of nivolumab(N)-AVD versus brentuximab vedotin in advanced stage classic Hodgkin lymphoma.

  • 994 patients were enrolled from 7/9/19 to 10/5/22.
  • 487 got Brentuximab.
  • 489 got Nivolumab.
  • 86% did not have a relapse after 1 year with Brentuximab.
  • 94% did not have a relapse after 1 year with Nivolumab.
Side effects toxicity chart

 

7:45pm

Time for Nivolumab.

The nurse tells me that sometimes the drug causes back pain, but it's unlikely. She starts the infusion, and tells us to click the "red button" if we need her.

She'll be back in 10.

 

About 30 seconds after the nurse left the room, something was off.

A moment later, the distant feeling of my heart beat turned into a sound. It became louder and louder.

Have you ever seen one of those war movies where you only hear the thumping of the person's heart? It was like that.

Then, I realized my chest was constricted. I'd try to breath in, but was cut off short.

I tell Mikayla: "Something's not right" and I hit the red button.

Fives seconds later a nurse came in, followed by another, and another. They turn off the Nivolumab.

As the drug stopped, I observed myself easing up. My face flushed and I noticed a new layer of sweat.

They check my vitals, everything was okay.

 

Mikayla almost had a panic attack. I thought we should check her vitals, not mine.

** photo she made me delete because "why would you take a photo of me freaking out"**

I asked if I could post this one and she said: "yeah because I'm not fucking traumatized in that one."

Reaction photo

 

The nurse tells me not to worry and starts giving me Benadryl through the IV (50mg, about 2 pills worth). They warned it may hurt a bit, but they undersold this one. My veins were stinging. It felt like bees were attacking my arm.

 

A few seconds later, I'm yawning. It takes 30 minutes for Benadryl tablets to kick in, 5 seconds for the IV to do it's thing. I was thoroughly impressed.

 

They get a Doctor on the phone, and he says we're good to move forward.

 

They begin the Nivolumab again, this time only having it go at 25% of the previous speed. The rest was smooth sailing.

 

Here's my sleepy reaction to the whole thing.

 

After we were wrapped up, I needed to go to the bathroom.

Nothing makes you feel more sick than wheeling this thing to take a piss.

Wheeling to bathroom

 

I took some mirror selfies for the memory.

Mirror selfie

 

Phew that was a long one! Thanks for reading through, I know this wasn't easy.

 

I have a handful of shoutouts to give, but will be saving those for the next updates :)

 

As always, I love your responses here. It makes my day to know you're keeping up and supporting along the way. Your words actually makes this whole thing far easier, so please send me your thoughts!

 

Love,
David

Kobro's Cancer Crew #6: First 2 weeks of Chemo

Lots to cover in this update! I'll be sharing how my first few weeks of chemo went, an update on additional drugs I'm taking, and some highlights.

For those of you who had any issues with email delivery (or some had duplicated sections) over the past 5 updates, let me know.

To kick things off, I have some good news to share!

NO MORE (or like 5x better) ITCHING! I didn't realized how bad the itching was until I stopped being itchy all the time. I've gotten back close to an hour of focus time each day simply because I'm not always resisting the need to scratch.

For a reminder of the itching situation (from the first KCC update): "In Hodgkin lymphoma, severe itching is one of the B symptoms, which also include fever and night sweats...Itching in lymphoma can be widespread and severe, significantly impacting the quality of life."

September '23 through March '24: I would have sever itches on a daily basis in multiple parts of my body (causing me scratch until I bled and created scars).

Itching comparison chart

April 20th: Now I'm only itchy below my knees and it's far easier to stop itching than before.

Current itching status

I'm also starting to see the difference in the size of my visible tumors. Have a look below.

Mid March:

Tumor March comparison

April 20th:

Tumor April comparison

Mid March:

Second tumor March view

April 20th:

Second tumor April view

While these are big improvements, the tumors above are the smaller ones.

I still don't know how the orange-sized tumor behind my heart is shrinking. We'll have an update when I get another PET scan in about 2 months.

Thankfully, there are signs those tumors are also shrinking. My breathing has gotten easier, so Doctor Handsome thinks the bigger tumors that are pushing against my airways are getting smaller.

I don't think I mentioned this in a previous updates, but for the past 3 months I'd often start coughing when I'd lay down (not anymore though!).

Another good proof point here is I ran (jogged) my first mile in months.

Running milestone screenshot

In other news, Dr Handsome got up upgraded to Dr. Hottie this week.

The way this came about is I was considering a trip to a conference in San Francisco this coming week (before Dr. Hottie turned it down).

Mikayla and I were discussing the idea when Dr. Handsome's new name emerged.

Text conversation about Dr. Hottie

Now, it's not all sunshine and roses. While I'm holding up well, chemo compounds on itself, which means it will get progressively harder over the next 6 months.

On top of that, I've had to start taking a handful of drugs to counter the side effects of chemo.

Nausea

On days of my chemo infusions, I'm given steroids, which does wonders.

On days 1-3 after chemo, I need to take Dexamethason, which also helps with Nausea.

Dexamethasone medication

Apparently this drug can cause other side effects...

Dexamethasone side effects list

Thankfully, I haven't noticed serious differences here. Maybe a little stomach pain, I'm a tad more moody, and I have been shoveling down more food than usual ... but those haven't impacted my quality of life at all.

After day 3 post-chemo round, I can take Ondansetron as needed (once every 8 hours). We want to avoid "Nausea creep". If these don't work, Doctor Hottie said:

"go to the emergency room"

Ondansetron medication

I only needed to take this once last week.

Stomach Ulcers

I'm taking Pantoprazole each morning, which protects my stomach lining. I forgot these for a few days and got some bad stomach acid.

Thankfully, no issues since.

Pantoprazole medication

Hyperuricemia

Chemo breaks down cancer cells which leads to high level of uric acid in the blood (known as Hyperuricemia). When this happens, there's an increased risk of joint pain and kidney stones.

To prevent this, Dr. Hottie had me start on Allopurinol (only for the first round of chemo)

Allopurinol medication
Hyperuricemia explanation diagram

Cold sores:

I started to get sores about a week in, so I got some prescriptions for mouth wash (one called Lidocaine that numbs the mouth and another that's a steroid).

Lidocaine mouthwash
Steroid mouthwash

Things to watch out for, which haven't happened (yet đź«°)

Cough

If I develop a cough, go to the emergency room.

If I have an impression of a cold, go to the emergency room.

These could be a sign of an infection.

Fever

If I have a 100.4+ fever for over an hour or 101 at any point, go to the emergency room.

This could also be a sign of an infection.

Diarrhea

If I poop more than 4 times a day, it could mean inflammation of colon due to immunotherapy.

If there's inflammation of the colon and you don't get steroids on time, "things could get bad".

Dr. Hottie didn't say anything else on what that meant, but I nodded along.

Inflammation of the lungs

This one's rare, but it's called Pneumonitis. This can happen when I take the autoimmune drug.

A sign of this is if there's a chronic cough and shortness of breath.

Chemo brain

Dr Hottie also shared how some patience complain with memory issues and focus called "chemo brain", so something to be aware of.

Now, let's get into the day by day overview!

Tuesday, April 2nd:

First day of chemo (covered in update #5).

Wednesday April 3rd - Thursday April 4th

Steroids are great, highly recommend.

I felt good until 4:00pm on the 4th when I had a bit of a crash and needed to nap. I'm typically a very high-energy person, so this was irritating.

Mikayla wrote me a friendly reminder on the mirror to close the toilet lid.

It turns out that if I go pee and don't close the lid, particles of Chemo can get in the air which can be bad exposure for the people you live with (only lasts ~72 hours after a chemo round though). I've been better at closing the lid ever since.

Toilet lid reminder note

Friday April 5th - Sunday April 7th:

I'd say these were the toughest days. Steroids wore off, and I felt more woozy than the previous few days. Thankfully, I still was able to work at least half the day.

Mikayla and I had a break and walked around Prospect Park with Tupper.

Prospect Park walk with Tupper

It turns out that Mikayla has a stress fracture in her left ankle, which she somehow managed to run a marathon in. We discovered this fracture after the marathon (hence, the boot).

Mikayla also got her first Sweet 16 invite from her mentee at the Girls Club NYC.

Sweet 16 invitation

Ron Miasnik came by the office to co-work on Sunday the 7th and proceeded to eat most of the fruit there.

Ron eating fruit at office

I cleaned up the space a bit... looking fresh, intros AI office.

Clean intros AI office

Monday, April 8th - Friday, April12th

I was feeling ambitious and told myself I'd work out every days this week. And I did!

They were shorter workouts, but I still got through them.

I still felt more tired than usual, but it was manageable.

Workout schedule screenshot

On the night of the 12th, I was feeling bold, so went to my friend Daniella's birthday party.

Daniella's birthday party

I also stopped by Jamie's house warming for a few minutes, but needed to leave early because I was starting to feel nauseous.

Saturday, April 13th

I felt inspired on Saturday morning, so I wrote up a short analysis of this new app called Airchat that was built by one of my "idols" named Naval.

Naval reposted the write up to his 2.3M followers and it got over 100k views! I've been following this guy for 6 years, so that felt pretty cool.

Naval repost stats
Tweet engagement metrics

He also DM'd me and told me he's heard about intros AI!

Naval DM about intros AI

After showing Mikayla this for the 3rd time she said: "Babe you becoming God to a bunch of mega nerds is not on my list of priorities right now."

Mikayla and I decided to start "co-work and chemo" where every few weekends I have a few friends stop by and we co-work.

It's still in the works, so we haven't really started inviting folks yet (if you are on this newsletter and based in NYC, you'll hear from me on this over the next few months).

I can't be exposed to too many people at one time (immune system is out of whack), so this is a good way to spend time with friends.

Here's my initial 5-minute logo concept.

Co-work and chemo logo concept

Sunday, April 14th

Our new couch came in!

New couch delivery

Here's another view, thanks to Mikayla's long arms.

Couch selfie with Mikayla

Monday, April 15th

I told all of my company's investors and advisors about the diagnosis. I also made a fun formula to determine how I anticipate this will impact my work output over the next 6 months.

They were all supportive.

Here's what I shared:

~ [I have cancer and basic info] ~ ...

Then...

"As for the chemo timeline: I started Chemo last week, and I'll have another round every other Friday from April 19th to September 20th (12 total rounds, 1 down and 11 to go). Here's a picture of me (with my mom and girlfriend in the background) for the first round.

First chemo session with mom and Mikayla

I'm still unsure if fundraising rounds or chemo rounds are worse...

Personal productivity framework:

For those who know me well, you know I geek out on frameworks. So I made a framework to determine the impact I anticipate chemo will have on my individual output over the next 6 months.

David's output = * .

Time In

  • Typically I'm able to work: 65-70 hrs a week
  • 10:00am - 9:00pm Mon - Wed
  • 10:00am - 8:00pm Thurs - Fri,
  • Between 10 and 20 hours over the weekend
  • Total of 65-70 hrs a week
  • Now I'll likely need to work: 45-55 hours a week
  • 10:00 - 7:00pm Mon- Friday
  • Only 5-10 hours over the weekend
  • Total of 45-55 hours a week

Energy Level

  • Typically my energy is at: 100%
  • Call it 100% with no energy dips (for the sake of a simple baseline).
  • New energy average will be at: 65%
  • Currently at around ~80% energy (80% of the time)
  • I have occasional dips to 50% energy (20% of the time).
  • My average energy is at around 74%.
  • Chemo is cumulative, so each round will likely wear me down a bit more.
  • If I drop around 2% energy each round, and my occasional dips are consistent at 50%...
  • My average energy over the next 6 months will be right around 65% (68% for 80% of the time and 50% for 20% of the time).

So...

Previous David output = (67.5 hours * 1.00) = 67.5 output units

New David output = (50 hours * 0.65) = 32.5 output units.

All that said, this means my output is going to be about half what I would typically produce.

  • Thankfully, I'm not the only one working on Intros AI, so this won't slow us down too much.
  • Who wouldn't benefit from an excuse to better prioritize?

What you can do to support: continue helping me build Intros AI. Be extra supportive when I ask for customer intros, talent suggestions, etc.! Yes, I'm pulling the cancer card to get you to be more active investors. I would be doing my stakeholders a dis-service by not using this to the company's advantage when possible.

I casually mentioned having cancer to the head of entrepreneurship programs at Yale the other day and you'd be shocked at how quickly the conversation turned from "should we buy this thing?" to "We're in for a trial, how will we implement this product?".

Don't worry, I'm only going to use the cancer card weekly to biweekly.

Serious side-note: there was a short period there where we weren't sure what the diagnosis was. There was a real chance that it could have been far more serious (ie. Non Hodgkin Lymphoma or Grey Zone Lymphoma).In that time period I came to terms with the truth that if the doctors told me that I had 5 years to live, rather than another 80 years, I'd still spend my time building Intros AI. There is nothing else I would rather do."

One of my investors named Morgan replied: " David! I almost feel bad for lymphoma - you're going to kick its ass."

Morgan knows me well.

Tuesday, April 14th - Thursday April 18th

I started to more-clearly lose my hair. Granted, I've been balding for a minute now.

Hair loss progression

In order to get mentally prepped, I tried a bald face filter.

Bald face filter test

Second bike-to-work day of the season was on the 16th of April.

Biking to work selfie

Sleeps gotten much better.

Overall sleep is up 17%, and slept debt is down 20% from last month.

Sleep improvement stats
Sleep debt reduction chart

Resting heart rate is starting to trend back down towards the 50s range where it was before symptoms started in August '23.

Heart rate trending down

My Heart Rate Variability is about 2x higher than it was before chemo started, and 65% higher than a month ago. This is a crazy improvement, almost back to where it was prior to cancer symptoms in August '23.

Heart rate variability improvement

I've also finally stopped my nightly melatonin, which initially helped me ween off the previous sleeping pills a few months back!

This brings us to my second round of chemo.

I'll be covering some of the drama there in the next update, so stay tuned.

Shout-outs

I still can't thank everyone enough for their endless support <3.

These care packages and letters make my day!

CC Gong sent over a beautiful assortment of wellness stuff.

CC Gong care package

Mikayla's Grandparents (who gave me permission to also call them Memaw and Pappap now) sent along a comfy blanket.

Blanket from Memaw and Pappap

Eliana Berger sent me this wicked comfy hat, some card games, and a blanket, and a Visa gift card to go towards a house cleaner.

Eliana's care package
Card games and hat from Eliana

My cousin Andrew sent over a few of his favorite books around getting through hard times. Planning to pick up Alone at Dawn this week.

Books from cousin Andrew

Aish Rathi got me a ton of stuff -- from Pringles and face masks to an iconic "fuck cancer" bracelet.

[I would have a picture here, but I already ate all the snacks already & the bracelet is in my backpack with a few other good luck charms].

Brooke Presten sent along dinner for Mikayla and I the other day.

Dinner from Brooke

Philip Ruffini sent along some of the world's best face moisturizer (along with one of his favorite books and some other goodies).

Face moisturizer from Philip

Nisreen sent over a ton of stuff including a waffle blanket because my nickname in the community world is "the brunch guy". She also sent a DoorDash gift card for Mik and I to grab some dinner!

Waffle blanket from Nisreen

Mikayla got me some slip on crocks - big fan.

New slip-on crocks

Mr. and Mrs. Luongo for sending over a delicious assortment of fruits and nuts.

Fruits and nuts from Luongos

Benny Fellows, Michael Ioffe, and Brandon Beckhardt stopped by to co-work.

Benny mentioned how "Cancer is the ultimate excuse" to get out of anything. He's so right.

Co-working session with friends

Sam and I started talking about ways Hospitals could use Intros AI. It slowly turned into some golden cancer comments.

Hospital conversation with Sam

Thank you for making this period of my life as easy as possible.

I'll be sending the next update over the coming weeks, covering my second round of chemo and more reflections to come!

Love,
David

Kobro's Cancer Crew #7: Round 2 & "Miscommuncation"

It's been an eventful past couple of weeks.

My friend Dave flew in for last treatment, there was some miscommunication between doctors, and Tupper's appetite continues to impress.

Thursday, April 18th

Dave flew in from Boston and I picked him up at the Airport.

Picking up Dave from airport

I asked Dave to walk Tupper that night because I was feeling lazy.

To give him an extra nudge, I said, "Dave, I have cancer."

He paused, thought about it, and said:

"And? ... I'm a guest."

We ended up having a discussion on whether cancer or being a "Guest" receives more privileges.

"Guest" ended up being the winner and Tupper and I had a nice little walk.

Round 2 (April 19th)

I'm starting to look forward to Chemo. If I just sat around and didn't treat this thing, I'd be dead in ~1-3 years. Chemo is a blessing.

Unfortunately, we started off round 2 on the wrong foot.

The nurse went to Ohio State.

If there were ever to be a "deadly accident" happen at MSK Sloan it would be because the person administering a drug went to Ohio State and the person receiving the drug went to Michigan.

Thankfully, I didn't graduate, so we were in the clear.

Dave wasn't making the situation any better with this michigan sweatshirt on (he borrowed mine that day).

Dave wearing Michigan sweatshirt at hospital

You can see the nurse holding her hands back from strangling him (Michigan or no Michigan, can't blame her).

Nurse with restrained expression

Bloodwork

First step was getting my blood drawn.

As a refresher, this is required each time to make sure there's nothing strange going on (ie. high levels of certain enzymes could be signs of infection, poor liver health, etc).

Overall levels were "mostly normal" but my liver enzymes were much higher than usual (over 3 times the recommended upper limit). AST (something with my liver) jumped from 89 to 187 over a few weeks.

Liver enzyme test results

This is a known potential side effect of one of the drugs (Nivolumab drug #4 -- the immunotherapy one that I responded to poorly last time when my heart throbbed and couldn't breath too well). I later asked the doctor about this and he said it occurs in roughly 10-20% of cases.

The nurse didn't think it was quite high enough to justify skipping anything, so we continued as normal.

While I was getting my blood drawn, I noticed some of the paintings on the wall. I was almost impressed with about how bad the art was.

Hospital wall art

I figured these were from like kids in middle school who donated the art as part of volunteer work. This art belongs in an attic, tucked behind old athletic jerseys, so it was the only rational explanation.

I asked the nurse: "That's sweet, are these from like a local elementary or middle school or something?

The nurse said no, they were donated by local artists.

I nodded along as if I wasn't shocked. I'd donate these painting too if I had them.

More questionable hospital art

Gross. Finger painting? Just because they're donated doesn't mean they need to be hung up, but not place to say anything else, so I dropped it.

Mini check-in before treatment

Before we kicked off the treatment, there were a few items to discuss:

  • Symptom progress:
    • No more itching -- HUGE.
    • No more coughing when I lay down.
    • No more nose bleeds.
    • Nausea -- overall pretty good
    • Constipation: not too bad, but I need to keep the water drinking up.
  • Potential trip to SF for a conference: The nurse shut this down.
  • The nurse asked if I was taking off work, and we all sorta giggled.

Lastly, there's a short bike trip I want to do this summer with my brother Michael. The nurse says it's possible, but ONLY if it's either day 1-3 after chemo or days 12-13 (right before the next chemo round).

She described the graph of my immune system strength sorta like this (don't mind my poor design).

Immune system strength chart over chemo cycle

Counts (white blood counts and overall health) are highest right before you start the chemo round.

Then, you have the lowest counts on days 7-10. This is when you are most susceptible to getting sick and chemo is doing it's thing. Best to should avoid seeing more than a few people during this time.

Finally, the chemo starts to get our of your system and you're a little healthier right before the next round. I thought this was interesting. The following dips in counts each round explains how it gets a bit harder on your body each time.

Treatment time

Look how ready we all were for round two -- HYPED up.

Group photo ready for round 2 chemo

I needed to use a pillow to prop my arm up, so ask Dave for the pillow behind his back.

Dave says: "Oh I was kinda using the pillow". He eventually complies.

"Guest" might have higher privileges at home, but in hospitals, Cancer wins every time.

The nurse needed to get a second set of eyes to confirm we're putting the right stuff in me.

Nurse checking medication bags

Luongo said: "You're putting ALL that in you???

Multiple chemo drug bags

I asked about Red Death (above) making a comment on it's nickname.

For a quick refresher from update #5 "Fun fact: Doxorubicin is also known as "Red Death" or "The Red Devil" because it is a clear bright red color. It will turn my pee, sweat and tears red so I need to make sure to wear dark shirts (it stains)."

As she's administering it, I asked: It's named that because of the color right?

She corrected me:

"Oh yeah, that and the heart stuff. It's called Red Death because it affects your heart. But that's a good thing! If the doctor is allowing you to take it, it means you have a strong heart.

Red Death chemo drug being administered

I give a nervous side glance to Mikayla, and didn't say anything else.

Enough questions for the day.

Dave & Mikayla read and worked a bit during the first 3 chemo drugs (~2 hours or so).

Dave and Mikayla reading during chemo

Somehow we started talking about Lulu Lemon shorts. Mikayla was roasting me because I'll spend $80 on a pair of shorts every now and then.

Then she said: "To make it worse, sometime he'll wear the things he just bought home from the store because he's so excited to try it on like a 6 year old."

Then, out of left field, the nurse goes: "MMMMHHMMM" in agreement with Mikayla's critique.

There I am getting literal poison injected to me, and I have this middle aged nurse and my girlfriend cooking my ass.

Miscommunication 🙄

~5:50pm: we were ready for the last drug, Nivolumab.

The nurse came in and said "sorry, it's not ready yet". It turns out that they "make" Nivolumab day-of because it only lasts for around 16 hours. They usually need to wait until blood work comes back in the clear before they administer it as well. Blood work results came out at least 90 minutes prior, so it seemed a bit strange.

~6:15pm: the nurse comes back and says that the Nivolumab was ready, but we can't administer the Nivolumab.

I asked why.

The nurse replied: "The doctor decided that it didn't make sense to. It's mainly because of your reaction last time and the liver results are a bit out of range."

~6:40pm: I spoke with Dr. Steiner over the phone. He said the nurses only notified him about the Liver numbers a few minutes beforehand. They needed his sign-off in order to administer the drugs, so there was nothing to worry about.

Thinking on this further, a few things didn't match up:

  • Why would they have a rule that you need sign off to administer the drugs, but don't need sign off to create mix drugs? I looked up how much a single dose of Nivolumab costs and it was $3-5k (mainly insurance pays this). The drug lasts 16 hours, so if they aren't able to find another patient to give this to by tomorrow morning, then it's just down the drain.
  • The Doctor should have been more proactive here. The blood work was ready to review for at least 90 minutes.

Ether way there's a system / communication flaw here that makes me think: "holy shit. If this is MSK, imagine what it's like at a non-top cancer hospital looks like."

I sent this note to Dr. Steiner:

Email to Dr. Steiner about communication issues

His response:

Dr. Steiner's response email

I was hoping for a better answer, but glad he'll be a little more on top of things. I'm keeping a close watch on them!

Tupperware

We'll wrap up this update with a short Tup-date (a Tupperware Update).

I caught Tupper with Mikayla's sunglasses in his mouth.

Tupper with sunglasses in mouth

Appetite is both maternal and paternal.

Tupper eating enthusiastically

We bought him this "indestructible" chew toy. The manufacturers were not designing this with Tupper in mind.

Destroyed 'indestructible' chew toy

For those of you curious how Tupper is able to eat anything and everything, I filmed a 15 second video of his impeccable technique. It's really quite impressive how he uses his front paws to get the right angle on things. He's one determined little guy!

Shout outs

Dave for flying all the way to NYC to visit!

Dave visit to NYC

Grandma and Grandpa for the new read.

Book from Grandma and Grandpa

Joe Negan for the Story of Philosophy.

Story of Philosophy book

Neiman, Michael, and Ron for brunch!

Brunch with friends

Janice & Bill Skelton for the chicken noodle soup & loafs.

Chicken noodle soup and loaves

Aunt Nancy for the home-made chocolates and loaf.

Homemade chocolates from Aunt Nancy

Jonah, Michael, and Colin for some co-working these past few weeks.

Co-working with Jonah
Co-working with Michael
Co-working with Colin

David Kosofsky (AKA Uncle David) for the pro nail clippers.

Professional nail clippers gift

Mikayla's Grandmother for the thoughtful card!

Card from Mikayla's grandmother

Which one of you sent me this emotional support pickle? I love it.

Emotional support pickle plush

Gefen for the coffee (Gefen runs a cool coffee company at Couplet Coffee)

Coffee gift from Gefen

Next up

Lots has happened in the past few days / weeks here, so aiming to send update #8 your way by next weekend. Just wrapped up round #3, will share more soon :)

Thank you all for the continued support <3

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).

Watch morning hello

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).

Hair loss progress photo

Here's a picture of me bug fixing during chemo with brother Michael and Mikayla.

Bug fixing during chemo with 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.

Weight gain from steroids

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.

Sleep journal entries 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.

Morning run statistics

After I ran a 9:31 mile, my brother Mike said that Lymphoma runs a 9:20 mile, so I gotta keep training.

Text from Mike about running pace vs lymphoma

I decided to let my past allergist know we found out was was going on. His recommendation was to "Treat the underlying lymphoma".

Email exchange with past allergist

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).

Instagram ad about boyfriend balding

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.

Dr. Handsome and visiting doctor from Barcelona

So serious. So handsome.

The nurse hit a valve in my vein, so she had to keep repositioning the needle.

IV needle in arm during treatment

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.

Mikayla being supportive during treatment

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).

Three Thirty Cafe logo
Coffee shop setup at apartment

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.

Liver ultrasound image

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)

Ultrasound report showing unremarkable veins

I've slept an average of 4:48 minutes week of 7th - 13th.

Sleep tracking data showing 4:48 average

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.

Non-alcoholic beer alternative

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.

Improved liver enzyme test results

This little rash popped up, forgot to mention it to the doctor, but doesn't look serious.

Small rash on skin

Mom doing her energy work on me before treatment.

Mom doing energy work 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!

Selfie after round 4 of chemo

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.

Sleep tracking showing under 5 hours average

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).
Bike ride in Prospect Park with Mike

Shout outs

4 years ago, Sean Stapleton and I were exploring Madrid and found these cookies made by these nuns.

Nun-made cookies from Madrid

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.

Sean's journey to find nun cookies

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.

Cookies that Sean brought from Spain

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!

Message from Paige and Michael about baby

Grandma and Grandpa got us a subscription for monthly fruit deliveries for the next year. Delicious.

Monthly fruit delivery from grandparents

Thanks to Mom and Mike for driving down from Boston for the weekend!

Mom and Mike visiting from Boston

And Mom for walking Tupperware aka Tuppawuppa aka Tupper aka tuptup aka T-dubs.

Mom walking Tupper

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

Kobro's Cancer Crew #9: Limpus & My First Tattoo

Wow, busy couple of weeks! Sorry for not sending an update earlier. A few of you have reached out to check in, and I promise you, I'm not dead.

Currently waiting on a blood test to determine the plan for the next infusion, but overall things are looking good. The next update will cover a more comprehensive update on the current status of the Lymphoma.

Spoiler alert: we're kicking Lymphoma's ass, as anticipated.

The one place that's been bugging me is I've gained ~27 pounds over 40 days. I went from 190lbs (early May) to 217lbs today. The steroids they have me on are making me eat a ton, so gotta watch that. The last time I was overweight was in 4th grade when I was mistaken for being a girl on a weekly basis.

Weight gain progress from steroids

Here's a selfie I took other day to show some friends how I'm getting a lil chunky compared to my typical less chunky state. I know I look fine, just spooky to see yourself put on weight in such a short time-period.

Selfie showing weight gain from steroids

I'm also getting physically weaker which bothers me, but whatever. After all this is done I'm gonna get crazy in shape. I sorta need to get in really good shape and health because it turns out that I'm more prone to getting other kinds of cancer.

Recently found out that those treated for Hodgkin lymphoma have an increased risk of developing secondary cancers (some sources say 3 to 5 times higher than that of the general population and another says 70% higher). For whatever reason I'm especially more prone to lung cancer I guess? I've never been much of a drug person, but like maybe once every few months I'd smoke. So… probably shouldn't do that anymore.

Now, speaking of sins and things that my grandparents are learning about in this newsletter, let's talk about tattoos.

My First Tattoo

First… I am proudly jewish, and jews aren't supposed to get tattoos. That said, it's not like a huge deal.

There's a whole thing around not being able to be buried in a jewish cemetery if you have tattoos, but I did some research and it seems like that's more of a myth / only for extra conservative (religiously conservative) cemeteries.

Research about Jewish burial with tattoos

Even Chabad said it's not a deal breaker (although it's "forbidden")

Chabad response about tattoos

I've wanted a tattoo for the past 7 years, but I haven't quite pulled the trigger on it. Feels like that time has come. God will forgive me on this one, we had a little pow-wow the other day.

Now, the fun thing here is YOU are all gonna be a part of that tattoo (yes even you Grandma and Grandpa who I can't imagine will support the tattoo idea LOL).

I had this idea at 2:00am the other night, so bear with me…

Meet Limpus, our arch nemesis.

Limpus, the personification of lymphoma

I made Limpus using some fun AI tools, took 10-minutes at one of my 5:00am diner sessions between work emails. Don't worry, this will not be tattoo'd on me… I'll cover the tattoo in a few minutes.

Who is Limpus you may ask?
Limpus is the personification (think that's the word) of my Lymphoma, and we are in the middle of a battle against Limpus.

Why the name Limpus?
I was thinking of a name, and it was the first one that popped into mind. It reminds me of a rich kid I hated in 4th-8th grade basketball on our rival team (Manchester). He was always a little bit better than I was and he was such a poor sport. I had some real beef with this kid.

Limpus also sounds sorta like Lymphoma and doesn't have any other associations with it that I could think of, so it can be sorta silo'd off as this enemy for all of us.

It's also just a goofy name. What kind of thing is named Limpus? It sounds both prestigious and downright stupid at the same time. Perfect for cancer you want to hate.

Now, here's where things got a little juicy and adds another layer to the name.

I looked up Limpus this morning, just in case it was like a murderer's last name or had too much baggage tied to it, and I found this:

Meaning of the name Limpus - brings to completion anything they start

Initial reaction: "Woah… I just named my cancer something that brings to completion anything it starts…"
Got instant chills.

Now this might seem like I'm playing with fire or fate or something. I'm naming the thing that could kill me something that will complete it's mission. I've never been a poetic or artsy sort of person, but this feels like it's in that realm. It's giving Oedipus-energy (minus the weird family stuff).

I thought of a text that my friend David Sun sent me a few months ago when I told him I had cancer and sent him the first Kobro's Cancer Crew update.

Text from David Sun about worthy opponent

Love that — "worthy opponent".

Then a few days later he sent this along (actually made me tear up a bit, as all of your messages have).

Follow-up text from David Sun about video game analogy

First, David Sun is a mega nerd. He often thinks in video game analogies.

Second, I like the idea of a worthy opponent to use in this fight. It makes it more … exhilarating.

Who's a better opponent than someone who "always brings to completion anything they start"? Clearly they haven't met KCC.

Besides, the fight was over before it began.

Scoreboard & Tattoo

The final tattoo will have to do something with a score board of sorts.

I want to quantify all the pain caused by Limpus, quantify the support from you all (the KCC), and show how the KCC was the clear winner in this battle.

Once again, this is a rigged game, KCC will win.

Now, how will we tally up the points and what does a point even mean in this context? How do we win points?

The short answer here is I'm not sure yet… would love to get any ideas if you have one.

  • I don't want gifts to be a way we can win points (even though Mikayla and I have been blown away by the thoughtfulness from the food, gift cards, books, house cleanings, fuzzy socks, hats, blankets, and little knickknacks).
  • I'll think more on this too, but please send ideas for how we can tally up points for the KCC.
  • I'll also think on out how to quantify the past and current pain that Limpus caused.

Now, this might sound like a strange concept, but let me share a quick background on why this concept around quantifying something so abstract and human and vulnerable feels right to me.

So the way I like to understand the world (like a lot of people I'm guessing) is through quantifying things. Once I could properly walk and talk, the first thing I wanted to understand (according to Mom) was how much everything in the world costs.

It's not that I wanted things, I was just excited about the idea of trying to quantify and value something like a house or a car or a candy bar. We'd walk around our neighborhood and I'd ask Mom how much it would take to purchase every item I saw.

My baby sitter named Amy said the second I could draw when I was a kid, I drew a perfect replica of a dollar bill.

Side note on my view of money today: I don't really care much about money (but I do like the freedom and influence it can give me and coordination problems it solves in the world). The thing that gets me amped up about money is how it enables us to quantify previously unquantifiable things. Obviously there's more to money, but this is just what gets me jazzed about the topic. The book Debt, The First 5,000 Years by Anthropologist David Graeber is one of my all-time favorites that covers part of the subject.

Putting a number to something has always given me a sense of understanding of that thing. It's probably tied to a control complex of sorts, but that's for conversations with Michelle (my therapist).

For those who know me well, you also know that I keep everyone I've ever met on a spreadsheet. If you are on my "Personal board of advisors" you'd also know that I used to track and correlate different personal metrics like how productive I was (based on # tasks done & a few subjective measurements) and how that relates to my sleep.

Here's a graph from Q4 2020 that shows how closely productivity and sleep was for me.

Graph showing correlation between productivity and sleep from Q4 2020

All that said, this idea of quantifying something as existential as pain caused or the love and support I feel from others is very me even if it's a bit unsettling.

One other potential benefit of providing a structure around the support from you all (by putting a score on it) is it could make a more clear path for how to support. I've noticed that many of you (just like me if I were in your shoes) really want to support but like aren't sure how. I also don't know how to guide you in supporting and showing your love and care.

It's a weird sorta problem. There's some gap between you wanting to be supportive and me not really knowing how to ask for support aside from like moral and emotional support (which has been incredible). Showing love is such a funky thing I've always had a tough time wrapping my head around.

Whatever we decide is the scoring mechanism for KCC points against the pain points of Limpus, it will provide a structure for you to help in that way.

Half baked idea - but maybe we just use written cards as our metric? I have some from you that I cherish and I plan to frame / laminate all of them so I'll have them until the day I die at a ripe age of around 130. You just reading and responding to these emails also means the world to me, so maybe I factor that in?

I don't know, more on this soon. Will think on and excited to hear your ideas too.

SO! Summary & next steps:

  1. I'm doing well — you'll hear more on PET scan and cancer stuff soon. Work's been a lot recently, so cranked this email out 5-9am so I could still get in a full day of Intros AI stuff in.
  2. I'm getting fluffy, not quite fat. Not to worry, my ego could use a correction, and I'll get in shape after this whole thing is over.
  3. You met Limpus, our arch nemesis. We discussed how Limpus means something that finishes things to completion, and is a good name for this villain.
  4. I'm getting a tattoo (probably in fall after treatment) that somehow represents how KCC beats Limpus in this battle.
  5. I like quantifying things, you shouldn't be alarmed that this is how I want to represent something so personal.
  6. Sorry Kobrosky (and Gipstein) fam, gonna be getting a tattoo.

Next steps — let me know if you have any ideas around quantifying KCC's support. One current idea is written cards that lead to points. I still want to do a fundraiser too (my hair is still disappearing so doing something around that later in summer). That said, I don't like the idea of money or gifts being tied to this…

Also, this is a long email as is, so will be doing shout-outs in the next email! Appreciate you <3

Love,
David

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.

Healing scars on left foot from months of itching

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.

Tupper pulling David on skateboard

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.

Early morning work session at 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.

Old skateboard collection 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.

Hanging out with Matt Rich in Boston

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.

Mom and Dad dramatically covering noses from chemo farts

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.

PET scan preparation with radioactive sugar injection

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

Radioactive patient card from PET scan

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.

Family gathered for treatment #5 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.

Dr. Handsome reviewing PET scan results

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)

PET scan before treatment showing multiple tumors

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

PET scan after treatment showing dramatic improvement

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.

PET scan report showing positive results

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.

David with family during treatment

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.

Dad telling jokes to nurse during treatment

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!

Mikayla in cast after ankle surgery

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

Tupper with new haircut looking like Ice Age squirrel

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).

David speaking on AI panel during NYC Tech Week

June 4th - June 13th

Events and activities during early June

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.

Masterchef cooking competition event with professional chef

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.

David showing weight gain from steroids

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.

Blood test results showing liver improvement

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.

Working with nurse John during Round 6 treatment

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.

Taking customer support calls during chemo infusion

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!

Celtics hat and chocolate gift from building doormen
Sweet card from building doormen
More photos from building doormen gift

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

Love,
David

Kobro's Cancer Crew #11: Frosted tips?

In my men's pickup league last fall, they tracked where you make or miss shots. The Red Xs are where I've missed shots and green dots are where I've hit shots.

Basketball shot chart showing makes and misses in pickup league

It turns out that nurses do the same exact thing except they show where they stick a needle in you for chemo. Thought this was funny… I hope their percentages are higher than mine.

Nurse's chart tracking IV needle placement locations

Now, let's get into the important stuff!

Lymphoma Fundraiser

So far I've kept my diagnosis and treatment fairly low-key, mainly just sharing with you (family and close friends).

That said, there's folks in my life that I'm sure would appreciate to know what's going on. So, I decided to be more public and post on Instagram, facebook, etc. I also thought this would be a great excuse to ask people for money towards something meaningful.

Here's the post I put on Instagram:

A few months ago I was diagnosed with stage 4 Hodgkin Lymphoma. On the bright side, it's one of the most curable cancers and I've got tons of support from family and friends.

I've already started chemo (12 rounds over 6 months) and the doctor says I am expected to make a full recovery. Feeling good so far!

I can't change the scenario, so I figured why not have some fun with this…

My hair's falling out and starting to get all patchy, so I'm having friends (you) bid on a new hairstyle before I shave it all off.

All money raised will go toward paying for another person's Lymphoma treatment. Thankfully I have solid healthcare and can afford the other expenses, but many people aren't as lucky. I'm planning to find a person/people on GoFundMe who can't afford treatment. Let me know if you have anyone in mind.

Here's how it'll work:

1. There's 3 hairstyles to choose from: mohawk, frosted tips, or half shaved head.

2. Venmo me @kobro with your vote in the comments (DM me if you rather Zelle, PayPal, Cashapp, etc.).

3. Whatever hairstyle has the highest cumulative donation, wins. I'll collect donations through Saturday, July 20th.

4. On Sunday, July 21st I'll be getting the haircut (or bleaching my hair in the case of frosted tips).

5. On Sunday July 28th I'll be shaving my head + donating to the person/people who will have a portion of their treatment covered.

I'm super comfortable talking about cancer stuff, so feel free to reach out if you have any questions.

This sort of thing really forces you to appreciate the scarcity of the time we have here. I've never felt more motivated to create meaning.

Last thing I'll say is I'm beyond grateful for everyone who has shown up and been supportive — especially my girlfriend Mikayla and my parents who helped me through 8 months of symptoms before we figured out the diagnosis. No doubt we'll beat this thing!

Instagram post about lymphoma fundraiser and hairstyle voting

Mikayla had the idea to put the money towards helping someone (or multiple people) pay for their lymphoma treatment. She always comes up with the good ideas.

Here's just one example from GoFundMe — lots of people post their stories and why they need support:

Example GoFundMe campaign for lymphoma treatment support

How to contribute:

As mentioned in the instagram post, the easiest way is to Venmo me @ kobro (or Zelle / Paypal davidkobrosky@gmail.com) and let me know your vote in the comments.

That said, I know some folks here are "check" people. In other words, you're old. It may not be best practice to call someone old and ask them for money in the same paragraph, so you'll have to forgive me.

If you're too old for Venmo or others, feel free to make a check out to my name and send to:

David Kobrosky
395 Leonard St. Apt. 330
Brooklyn, New York 11211

You'll just have to take my word that I won't pocket it and spend it on skateboards.

How it's going:

In 36 hours we had $5,378 donated from 144 people. People are showing up!

We're talking camp friends, my elementary school gym teacher, co-workers at my first cashier job when I was 14 years old.

Here's a graphic I made to get the people excited about the options.

Graphic showing hairstyle options: mohawk, frosted tips, and half shaved head

Seems like Frosted tips is in the lead, both by number of voters and total $$ donated.

Fundraiser voting results showing frosted tips in the lead

You have a chance to change the direction of my hair style for the entirety of a week.

Finally, let's get into the proper health update

I don't look or feel quite as sharp as I did a few months back (now I'm up 45lbs from 190lbs to 235lbs).

David showing weight gain from chemo treatment

Now before you say: "Wow, David looks fat and depleted", which would be a valid statement, guess what?

I decided to see I could beat my mile time from the first round of chemo. I smoked it — 8:48 min mile pace vs. 10:00 min.

Running statistics showing improved 8:48 mile time

And if you still aren't convinced I'm doing alright, here's a video I made you from a few weeks ago on Saturday morning at 4:30am when I was getting my day started.

I've been generally careful to not push myself too hard, but I played some pickup basketball the and twisted my ankle. Doc wasn't happy. Still skateboarding too.

David skateboarding despite doctor's concerns

Round 7 wasn't too bad. In good news, my liver toxicity levels seem to be stabilizing. They are't entirely sure why, but I'm not complaining.

I got to see all these cute cancer cards from kids at nearby schools. They have terrible spelling and make very little sense, but I guess it would be nice to read these if I was like old and on my death bed. I get the sentiment.

Get well cards from local school children

Here's a juicy picture of me and the red devil drug.

David receiving red devil chemo drug during treatment

After round 7, Mikayla and I went to Boston to visit my family and stopped in Hartford and Providence along the way.

We randomly bumped into my old intern at Intros AI at a coffee shop! Here's a picture of Jonathan and Mikayla. Jonathan's coming up on his final semester at Yale. Smartypants.

Jonathan and Mikayla at coffee shop in New Haven

While in Boston I got to see some of the OGs. Gideon Roell and Matt Rich pictured to the left. Tom Cole and Mikayla on the right.

Group photo with friends in Boston - Gideon, Matt, Tom and Mikayla

Round 8 was a few days back — this one got me more nauseous than the other ones so far.

Feeling a tad more worn down too, but we only got 4 more to go baby. 2/3rds of the way there.

I tried to get out of taking one of the drugs I don't like because the Physician's Assistant was there instead of Doctor Handsome. Doctor Handsome previously said that we may not need to take Nivolomab every infusion, so I thought this was my chance.

The Physician's Assistant laughed at me and said that: "we're going to continue the full treatment". Mikayla commented that it was like a kid telling the substitute teacher "we were told there wasn't homework".

I also learned some new stuff around B cells which are memory cells that remind your body how to fight off a disease. Since Chemo kills a lot of these, I'm more prone to catch things like Covid.

Thankfully my white blood cells have been getting back to the typical levels, which means that if I were to catch something, I could likely fight it off. So, overall health is looking good.

Love,
David

Kobro's Cancer Crew #12: Frosted Tips!

Largely thanks to you (the KCC), we raised $10,221 from 259 donors.

We had 135 people vote for frosted tips ($5,458 raised), 79 vote for Mohawk ($2,842 raised), 16 vote for half shaves ($532 raised), and 29 for either a "Custom request" (including "Eat the hair", "Shave the top, keep the sides", and "Shaved heart emoji"), or "Delegation to Mikayla to decide" ($1,389 raised).

The average cost for Lymphoma treatment (out of pocket) is $10,175, which means we will be able to cover the entirety of someone's treatment (or we'll cover a good chunk of a few folks' treatment). Still open to last minute donations, let me know!

Mikayla and I will be doing some research and figuring out the best way to distribute the funds over the next few days. In the meantime, just know that you made this happen.

So now I have frosted tips…

David with frosted tips hairstyle after fundraiser vote
Another angle of David's frosted tips hairstyle
Close-up of frosted tips hair styling process
Final result of frosted tips hairstyle

Thanks to Sam Goldin (KCC Member) for taking photographs of the ~frosting~.

After posting the fundraiser on Instagram, I found out that quite a few friends had some form of cancer, and I didn't know about it!

Friends sharing their own cancer experiences after David's post

Sharing a few takeaways and learnings from speaking with other young cancer patients (you'll notice similar themes to these updates).

  • You've got two lives, and the second starts when you realize you only have one — everyone who's had cancer seems to have a strong grasp of how special our time is in this world. It often leads to an extra motivation or "fire" under them. I wish I had the same fire I have now prior to my diagnosis.
  • Chemo is shitty, but no chemo is shittier. If I didn't have chemo, I'd be dead in 2-3 years. Most patients I've spoken with are incredibly grateful for modern medicine. They even see themselves as lucky. It's easy to forget the world is progressing in countless ways (and that we can accelerate that progress).
  • It's not "I" or "me" who powers through treatment, it's the community around an individual. On a more personal level, it's the KCC! My family visiting during infusions, Mikayla being my rock through all of this, and close friends sending endless cancer jokes.

The fundraiser was such a strong reminder that if you put stuff out in the world, those who resonate will reach out and support you.

All of us have experienced the ~Internet~, so the idea is pretty obvious… but very few people actually act on it. There are a lot of folks who have something important to say, but don't make it enough of a priority to say those things (myself included).

Very glad I've had cancer as a catalyst to start saying more in a more "out there" way.

Anyways, shaving off the frosted tips this weekend, and have round #9 later today. Looking forward to hitting the 3/4ths mark!

Love,
David

Kobro's Cancer Crew #13: I'm bald!

Over the past few days, we received another ~$1k for the fundraiser, bringing the total raised to $11,141. Aside from a few pending donations, that brings an end to our fundraiser... and an end to my hair.

Check it out — I'm bald, baby!

David with his newly shaved bald head after the fundraiser event

The picture above is from our "shave off" event last Sunday.

Before I share more on the event and how my life has changed as a bald man, I want to cover how we're distributing all the money raised.

Initially we were thinking about researching folks on GoFundMe (you may remember this from KCC #11). We spent hours researching different cases, but realized we simply weren't qualified to determine who needs the donation. There's simply too many factors to consider from age, to type of lymphoma, to use of funds, etc.

Thankfully, there's some kick ass non profits out there that are far better at allocating donations than we are.

After researching several organizations, we've decided to split the donations between two organizations that help patient's with the financial burden of cancer treatment:

  1. Memorial Sloan Kettering's Patient Free-Care Fund
  2. Leukemia & Lymphoma Society (LLS) Co-Pay Assistance Program.

We found the Patient Free-Care Fund through the hospital. A few weeks ago, I told Dr. Handsome about our plan for the fundraiser and he directed us to the hospital's "Giving Officer (what a cool job title). They help cover patients' hospital bills, parking costs, mortgage payments, utility bills, and other expenses.

We also wanted to give to a program that works with patients who are specifically being treated for Lymphoma. We found The Leukemia & Lymphoma Society (LLS) Co-Pay Assistance Program which helps patients with blood cancers (including lymphoma) pay for treatment.

We'll be making the donation this week — just waiting for a few more donation checks to come in!

Now, getting into the shave off event last weekend, July 28th.... here's the invite cover Mikayla made. The invitation starts off with: "David is about to join the ranks of iconic bald guys."

Invitation cover for David's head shaving event made by Mikayla

We kicked off the event with shaving a mohawk. Everyone had the chance to trim off a bit of the frosted tips.

Group of friends helping to shave David's hair into a mohawk

Mikayla said I looked like a beta fish.

David with mohawk hairstyle looking like a beta fish

Towards the end of the event, I had everyone take a shot of Liquid Death, as a way to symbolize supporting me through chemo. The message being, we're all in this together.

The idea came from the nickname for doxorubicin (chemo drug I'm taking) which is "red death" or "red devil" and is one of the stronger chemo drugs.

For old people reading this, Liquid Death is literally just water in a can. The brand "Liquid Death" is an ironic marketing thing. It's very GenZ and the company is worth $1.4B dollars, and it's simply just water. Only water in a can, that's it.

Here's me holding up a can of Liquid Death.

David holding up a can of Liquid Death water

Thanks to all of those in Kobro's Cancer Crew who were able to stop by!

Now, let's get into the bald life. I haven't thought too deeply about this yet, but I never realized how many decisions in my life were slightly impacted by the fact that I had hair.

Examples include:

Power nap or no power nap?

  • Pre-bald era: the cost of a power nap was high due to bed head. After the power-nap I would need to wet my hair and then comb my hair.
  • Post-bald era: I save a minimum of 5 minutes (not to mention, frustration) whenever I need a quick power nap.

Hat or no hat?

  • Hat hair is now a thing of the past.

Helmet or no helmet?

  • Biking to work is now safer. I would occasionally not wear a helmet on the 10 minute bike to work because I don't want to have gross sweaty helmet hair for the day ahead.

Misc. Perks of being bald:

  1. Looking more "Brooklyn": I look more edgy than I ever have.
  2. Looking more intimidating: no one wants to mess with a bald guy.
  3. Bald person community: Bald guys seem to notice and respect me more.

The list goes on.

My Grandpa, who is also part of the bald mafia (AKA The Bafia), told me:

"who cares about hair anyway!!…Shows virility!? I expect that some day humans won't have hair anyway. It will go away as feathers did."

You heard it here first. The future is bald.

Chemo round 10 coming up on Friday, August 9th. Just a few more rounds to go!

Love,
David

Kobro's Cancer Crew #14: Limpus has no chance

Hope you've had a good past few weeks here. Just wrapped up round 10 — little more drained than earlier rounds, but still manageable!

David after completing chemo round 10

For today's update we're getting into the Limpus vs. KCC competition. It's a little meta, and has a slightly different tone than other KCC updates, so bear with me.

In Kobros Cancer Crew #9: KCC Vs. Limpus I brought up the idea of creating a competition between Limpus (a fictional character that represents my Lymphoma) and the KCC (you all — my community of family and friends).

We're in the middle of the competition. When I'm cancer free and chemo's over, I want to get some symbol of the competition tattooed on me, like a scoreboard of sorts that shows how the KCC beat Limpus.

That said, I'm having second thoughts on:

  1. Should we attempt to create a "score" for the KCC and Limpus?
  2. If so, what should the visual representation of this tattoo be? Is a "scoreboard" the right symbol or should it be something else?

Quick refresher:

Limpus is our arch nemesis. He is the personification of my Lymphoma. Here's a picture of him (yes, I am gendering my lymphoma).

Drawing of Limpus, the personification of David's lymphoma

Why create a competition in the first place?

  1. First, It isn't ME who's beating Limpus. It's the KCC. I'm the one going to chemo every few weeks, but that's only a fraction of the required effort here. My family flying in to visit. Mikayla being my rock through all of this. Your thoughtful letters, supportive texts, fuzzy socks, and endless cancer jokes. I want to somehow show that this collective effort beat Limpus. I like the idea of every thoughtful or supportive action someone takes both literally (through the actual support) and symbolically (through the tattoo) contributing to a larger effort to beat a little ugly green character named Limpus.
  2. Second, I've always enjoyed quantifying abstract things. In KCC #9 I mentioned: "Putting a number to something has always given me a sense of understanding of that thing… it's very me even if it's a bit unsettling."
  3. Finally, Scoreboards are fun. I enjoy reframing not-so-fun scenarios into games and cancer is just another one of those not-so-fun scenarios.

Now that we have a refresher on Limpus and the competition, let's discuss the first big question here…

Should we quantify a score for the KCC and Limpus?

I asked for some feedback in KCC #9 — and it was quite polarizing!

View 1:

On one hand, some folks are already getting into the idea of a competition … here's some strongly worded texts on how we're going to take Limpus down:

Text messages from friends showing enthusiasm about beating Limpus

Rosemary Brown: "Limpus doesn't stand a chance!"

Gary Sheng: "KCC Baby!"

I've also started to receive some ideas for how we could create a "score":

Mom: "…If knowledge is power, than I believe KCC should gets points for educating themselves about Lymphoma and reading your updates…. I can't change this but I can show up and be there. Once I verbalized that to Dad, 'all we can really do is show up,' he agreed so I think we can get points for going to appointments with you."

Before going further — unlimited points for Mom and Dad ^

Mom and Dad, you already know how grateful I am for you, but thank you.

Colin Flaherty: "What if you tallied up all the people who ever did something to help you in your treatment journey . . . and that was your tally for the size of the "KCC army"?

View 2:

On the other hand, you have folks like Grandma, Joe, and Matt that don't think it makes sense to create a score.

Grandma: "I suggest you just feel the love. The support can't be measured in things or concern. Maybe Grandpa can come up with an idea."

Joe Negen: "Honestly, I think that the best way to quantify the love you're receiving is to not quantify it. It's a highly qualitative experience, and I think that love and support … is an elusive and difficult thing to pin down, even with words, let alone numbers."

Matt Rich: "People show up in different ways. Quantification can distract from overall message, that it took a team and you want to show your gratitude. You don't need to quantify."

To summarize the views:

  • View 1 (Colin and Mom): This could be a fun way to show the collective effort of the KCC and provide structure around an abstract thing.
  • View 2 (Grandma, Joe, Matt): Quantifying something like support or love doesn't make sense. Love and support is a difficult thing to pin down, even with words, let alone numbers.

I agree with both views … after a few months of stirring on this, I think we've found a solid middle ground to show the KCC beating Limpus, without trying to make it toooo "numbers-y".

The KCC Army:

Rather than calculating "points" we're going to add up the number of people who've shown support in some way.

A nurse injects me with chemo, an old friend joins these updates, or my middle school teachers donated to the fundraiser. Each of these are examples of an individual who's shown up.

Think of this as the total "size" of Kobro's Cancer Crew. Shout out to Colin Flaherty for this idea!

Note, if the same nurse helps with chemo on a different day, that would not lead to more "points" or a larger "size", because we're only adding up the number of unique individuals who've shown support (not how they've shown support nor how many times they've shown support).

The reason I like this approach is people show support in different ways (shout out to Matt Rich and Joe Negen for bringing this up).

  • Tallying up each person who's supported in some way lets us create a score without quantifying how people show support in different ways.
  • It's almost like love languages — some who love with their time, other gifts, etc. It doesn't make sense to quantify or judge how they show up.
  • I also don't want to compare one person's way of showing support with another person's way of showing support.

I'll be including everyone that has showed up in some way, big or small (even being a part of these updates, or sending fuzzy socks).

Team Limpus

If the KCC "size" = everyone who's shown up, it only makes sense to give Limpus a "size" of 1.

We have an army of people against one poor little Limpus.

He doesn't stand a chance.

The tattoo

Mom and Grandma had a few thoughts here…

Mom: "About your Tattoo, I told you years ago that it's your body and I have no judgment on this topic. It's a personal decision."

Grandma: "As for tattoos, definitely not a fan."

Sorry Grandma, but we'll have to get past this one <3

Now, the question stands: should the tattoo that represents this competition be a scoreboard? I'm not sure, but leaning towards no.

Thankfully, we have some time — I can't get a tattoo until after treatment because there's a risk of infection, so I'll be thinking on this.

We could have little dots to represent everyone, or even some more abstract visual? Not sure, will be doodling. Let me know if you have any fun ideas to represent this army of the KCC vs. Limpus, a team of 1.

Thank you for the continued love and support here.

Love,
David

Kobro's Cancer Crew #15: Almost there

This whole chemo thing is getting old. Round #10 (August 9th) and #11 (August 23rd) have been a particular pain in the ass.

After round #10, a bunch of veins in my left arm got inflamed, so I started getting sharp pains around my wrist and inner forearm. Itchy rashes stared to pop up as well — some on my neck, face, chest, legs, and ankles.

The doc said I needed to continue taking the 12mg of Dexamethasone (steroids that are ~7x stronger than Prednisone).

I also got sick for a few days, so putting my all into work was tricky. I'd get these intense headaches and I think it's the first time I've experienced "chemo brain" which is sorta like a really foggy head.

All that said, could be much worse … and we only got one more round to go!

In other good news, round #11 was the first time that my liver enzymes were at a normal level in 6 months. This is a big deal, as my liver was one of the larger concerns towards the start of treatment (some chemo drugs can cause long-term liver damage).

Healthy ALT range (something to do with your liver enzymes) is 29-33 — you can see below how my ALT's been between 70 and 195 since March, but now I'm down to 48!

Chart showing David's liver enzyme levels improving over time, from elevated to near-normal range

The doctor isn't sure why my liver is (close to) normal now. Mom's theory is that it's because the cancer's going away. I like this theory too.

Crazy to think that I'll be all done with chemo in 10 days. We're in the final stretch!

Mikayla's Ankle

Mikayla's out of her cast and has been walking these past few weeks. She can't run until November, but her Doc (not Doctor Handsome -- different, less handsome Doctor) and Physical Therapist are impressed with the recovery.

Tupper's Anxiety

Tupperware (AKA Tupper) is now on doggy anxiety medication which seems to be helping his nerves.

One of the side effects of doggy anxiety medication is Tupper doesn't get as hungry. So, in order to convince him to eat his food, we need to drizzle the juice that collects at the top of greek yogurt over his food.

Then, and only then, is the food deemed edible by Tupper.

Tupper the dog being finicky about his food requiring Greek yogurt juice

We've tried other methods like putting pieces of turkey in there, chicken, etc. but only the juice of Greek Yogurt meets Tup's standards.

Limpus Tattoo

I've received some great ideas for the future tattoo that shows KCC beating Limpus in some way. I don't feel a rush to get the tattoo, so I'll likely take some time to think it over the next few months.

My cousin Amanda had the idea of "Limpus staring into a cracked mirror with "KCC WUZ HERE" graffitied over it".

I was curious what ChatGPT would make... while this isn't quite what I was going for, the iterations here are hilarious.

ChatGPT-generated humorous iterations of Limpus tattoo designs

Love,
David

Kobro's Cancer Crew #16: On Breaking Points

Tomorrow's my last day of chemo. We made it.

I'll likely write up a high-level reflection in the coming weeks, but today's KCC update is on resilience.

I've thought about my breaking point quite a bit these past 6 months. The question: "how much am I willing to endure before I give up?" comes up, especially during low points.

It's usually less of a depressing question and more of a curious one.

We'll start this update with answering the question "how much am I willing to endure before I give up" in the context of cancer treatment. Then, I'm going to see if we can generalize the approach.

Breaking point of cancer treatment

Thankfully, survival of stage 4 Hodgkin Lymphoma is somewhere in the 80-90% range. So, of course I was going to push through. I couldn't imagine me not pushing through. As someone who loves living, survival is an easy one to fight for.

Imagine these 3 variables:

  1. Importance of survival
  2. Chance of survival
  3. Pain or struggle caused by chemo

Here's a simple graph where I rated each on a scale of 1-10.

Chart showing David's ratings: Importance of survival (10), Chance of survival (8.5), Pain/struggle from chemo (6)

Now let's plug these into my entirely made-up formula called the Is cancer treatment worth it? formula ™

Is cancer treatment worth it? formula ™ = ({Importance of life} * {Chance of survival}) / {Pain or struggle caused by chemo}

With this we get: (10 * 8.5) / 6 = 14.7

Is it worth it? Let's check the Is cancer treatment worth it? formula ™ scale:

Scale showing cancer treatment worthiness: 0-5 (Maybe not), 5-10 (Sorta depends), 10+ (Hell yes)

The answer? Sorta depends.

Thank you, Is cancer treatment worth it? formula ™.

But what if that 80%-90% dropped to 1%… the scenario would change.

Updated chart with 1% chance of survival showing very low score

Is cancer treatment worth it? formula ™ = (10 * 0.1) / 6 = 0.16

My love of living might lead me to give up.

Would I want to spend my final days getting injections, surgeries, and being drugged up when there was a 1 in 100 chance that things work out? Probably not. I'd rather enjoy the time left.

In the context of cancer treatment, I'd guess my breaking point would be around the 1% - 3% chance of survival or 0.16 - 0.5 on the Is cancer treatment worth it? formula ™ scale.

I'm starting to realize now that the formula and scale aren't actually useful, but we're going to roll with it.

General approach

What about when there's a 10% - 20% chance of an outcome, and it's undoubtably not life or death, but my personal mission and values are on the line?

Let's make the Is it worth it? formula ™ (not to be confused with the Is cancer treatment worth it? formula ™)

With our innovative, new formula:

  • Importance of survival becomes Importance of outcome
  • Chance of survival becomes Chance of outcome
  • Pain or struggle caused by chemo becomes Pain or struggle caused by getting to the outcome

You might remember me sharing in the first KCC update that I was in a tricky place last fall.

I was itching myself like a psycho (cancer symptom), getting misdiagnosed, was on 60-90mg of Vyvance during the day, tried ~6 different sleeping meds at night, still only got 2-5 hours of a sleep, stopped paying myself, and my co-founder and I parted ways.

Intros.ai — my company that I see as a vehicle to bring my value of human connection into the world — seemed to be on the verge of shutting down.

Around this time was when I first started asking myself the question: "how much am I willing to endure before I give up?"

While there were quite a few stressors at the time, the majority of it was tied to Intros AI.

Was it worth pushing forward on Intros AI despite the struggle?

Here's the rough numbers:

Chart for Intros AI: Importance of outcome (9), Chance of outcome (2), Pain/struggle (7)

How about we plug this into the Is it worth it? formula ™

({Importance of outcome} * {Chance of outcome}) / {Pain or struggle caused by getting to the outcome} or (2 * 9) / 7 = 2.57

Pretty low score...

Let's check the Is it worth it? formula ™ scale.

Scale showing general worthiness: 0-5 (Maybe not), 5-10 (Sorta depends), 10+ (Hell yes)

The answer? Sorta depends.

Thank you, Is it worth it? formula ™

Unfortunately, the Is it worth it? formula ™ is over-simplified, and the scale is pretty useless, but it's an interesting exercise to capture (in some loose way) whether or not something is worth going through.

On a more serious note, yes, pushing forward on Intros AI was definitely worth going through for at least a few reasons:

  1. I still had conviction in the company's potential.
  2. I saw (and see) Intros AI as one of the vehicles to get my values out in the world.
  3. I had given my word to those who believed in the company that I would do whatever I could to make sure Intros AI reached it's potential.

I think I would have hit my breaking point if any one of the above 3 points weren't true.

Some thoughts

My largest concern with the world is that not enough people have something worth pushing for. Their "outcomes" aren't well enough defined and when they are defined, the variable of "Importance of outcome" is too low, even for the things people care most about.

I think it's tied to a meaning crisis of sorts — there aren't enough values we stand for, beliefs we would sacrifice for, nor are there people that we feel a responsibility to serve.

There's a lot more to be said here, but it's already 11:00pm and I have to get up tomorrow morning for MY LAST CHEMO TREATMENT (hopefully ever, please knock on wood for me wherever you are in this beautiful world).

I may be following up with a part 2 at some point…

Few questions to leave you with (would love any thoughts on these):

  1. How hype are you that chemo's nearly done?
  2. What's something (outside of your own survival) that you have a high "importance of outcome" score around. In other words, what are you fighting for?
  3. What other factors should be considered when deciding if something is worth it (aside from importance of outcome, chance of outcome, and pain or struggled caused)?
  4. How would you determine if someone is resilient? Maybe it's roughly "the lowest Is it worth it? formula ™ number someone would persevere through for an extended period of time?

Love,
David

Kobro's Cancer Crew #17: Ringing the bell

Every treatment day for the past 6 months, we'd hear another patient ring the bell. Friday was my turn.

David ringing the bell to celebrate completing his final chemo treatment

Here's the 20-second video, marking the completion of chemo. You can hear all the nurses who supported me throughout treatment in the background.

David with his parents and Mikayla celebrating the final chemo treatment

I knew it was a special day from the start. To kick it off, my brother Sam sent in a bunch of lox bagels and whitefish salad from Frankel's.

Delicious bagels and lox spread from Sam for the celebration

Before chemo, I met with Doctor Handsome. Not loving how he shaved the beard, but still handsome.

David with Doctor Handsome (Dr. Zelenetz) before the final treatment

I'll be going in for a PET scan in a few weeks to see where the cancer's at -- hoping we're all in the clear!

During treatment, Dad pulled the nurse outside to tell her some jokes that were too ~inappropriate~ for us to hear.

David's dad sharing inappropriate jokes with the nurses

Here's another 15-second clip capturing some of the final moments of chemo.

When everything wrapped up, I took a final selfie.

David's final selfie after completing all chemo treatments

After a 2 hour nap, we went out for a tasty duck dinner to celebrate at Rule of Thirds in Brooklyn.

Celebration dinner at Rule of Thirds restaurant in Brooklyn

I kept this update fairly short because I've been feeling especially tired this weekend, but I'll be sharing more info over the coming weeks on what recovery + checkins will look like!

Love,
David

Kobro's Cancer Crew #18: Bye Bye Limpus

It's official. I'm cancer free. Thank you for getting me here!

We confirmed that I am in remission with a final PET scan.

First, they gave me some radioactive sugar water. Then, they put me in this big machine to figure out how the sugar gets distributed in my body.

If the sugar gets eaten up by tumors, it lights up on the scan (and means the cancer is alive / growing).

If not, we're in the clear.

Here's the scan from 6 months ago. Lots of tumors.

PET scan from 6 months ago showing multiple tumors throughout David's body

Here's the scan from last week.

Recent PET scan showing David's body completely clear of cancer - in remission!

We're looking normal as fuck!

Bye bye Limpus.

Phew.

Tupper's especially excited. Mikayla caught him sitting like this on the couch the other day.

Tupper the dog sitting contentedly on the couch, celebrating David being cancer free

Thank you again for all the love and support along the way ❤️.

As for the future of these KCC updates, there's still a few things I need to keep you in the loop on:

  • Health progress: I'm still feeling fatigued from chemo, but starting to get back into shape. Already lost a few pounds (was up around 50lbs at one point from the steroids, so I have a ways to go).
  • Check-ins: I'll be having a quarterly check-in with my doctor to ensure there's no recurrence (recurrence is when the cancer comes back). It's very unlikely for this to happen.
  • Tattoo: I need to wait at least a few months for my immune system to fully recover before getting a tattoo. I'll keep thinking on some designs in the meantime! Recently decided that I'm now definitely against the scoreboard idea lol.

Lastly, I may start to write more on stuff outside of cancer, so will be letting you know if / when that begins.

As for the next few weeks...

Mikayla and I will be taking a celebratory vacation in mid-October. We're heading to Paris, Brussels, and Amsterdam. Send some travel recs!

Love,
David