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.

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).

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

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.

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.

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.

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).

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.

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.

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

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.

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).

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:

His response:

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.

Appetite is both maternal and paternal.

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

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!

Grandma and Grandpa for the new read.

Joe Negan for the Story of Philosophy.

Neiman, Michael, and Ron for brunch!

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

Aunt Nancy for the home-made chocolates and loaf.

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

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

Mikayla's Grandmother for the thoughtful card!

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

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

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