Kobro's Cancer Crew #3: Treatment Hiccups

April 15, 2025

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.

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.

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.

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

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

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.

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:

We move forward with Chemo today.
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.

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

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.

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

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.

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.

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

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

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

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