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."

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.

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.

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.

March 2nd

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

March 3rd

Tupper also joined to cheer Mikayla on.

March 6th

I went to New York Imaging associates for my biopsy.

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)

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

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.

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).

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."

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.

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.

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

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!

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.

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.

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).

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

March 13th

I spoke about startups to a UMich club.

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!

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.

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.

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).

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

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).

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.

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".

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.

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.

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.

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.

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".

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)