Reporting Back

Scott cut it for me. A man of many talents!

The Reality of Chemo

The reality of chemotherapy is finally settling in, and it’s challenging. I’ll need 6 cycles of chemo (some before surgery and some after), and each cycle is 21 days long. The breakdown of a chemotherapy cycle for me is supposed to look something like this:

  • Days 1–3: Six to seven hours each day in the infusion unit getting IV chemo meds and anti-nausea meds, plus some home meds
  • Days 4–11: Oral and self-injected meds to help with nausea and to boost my white blood cell counts
  • Days 6–16: Radiation on weekdays (*though this hasn’t happened yet — insurance has been a shit show)
  • Days 17–21: Recovery until the next round

Neutropenia & Nadir

One of the things I’ve been most scared of with chemo is “nadir”— when my white blood cell (WBC) counts drop and I’m prone to infection but have no immune system to fight it.

Check out those floor to ceiling windows!!! And please ignore my mess :)

Insurance Sucks

So about the delay to radiation. I could write a whole post about this saga, but I’ll keep it brief. There are 3 types of radiation that I could get:

  • 3D radiation: I don’t know a ton about this method because literally no doctor I spoke to (and I spoke to 4 different radiation oncologists) thought it was the right method for me. It’s used for breast and lung cancer patients, and if I got it, it would unnecessarily expose my breast and lung tissues (as well as the nerves in my brachial plexus) to radiation, which puts me at a higher risk of secondary cancers down the road.
  • Photon therapy: This is what most doctors recommended. It provides pretty even entry and exit doses of radiation, but they can better mold the beam to spare more of my lungs, breast, and brachial nerves. It seems to be standard protocol for my type of sarcoma.
  • Proton therapy: This is the most cutting edge — only MGH could offer it. It provides a higher entry dose but a lower exit dose of radiation. It does the best job of protecting my lungs, breast tissue, and brachial plexus nerves from unnecessary radiation. From what I’ve been told, it’s the best type of radiation for me, but it’s expensive, difficult to get covered, and in very high demand.

Stronger Than Sarcoma

If we need to pay for radiation, we will figure out how to. It is still incredibly stressful thinking about the the financial burden on my family if we do have to pay, but I know in my heart that I will not get 3D radiation unless something medically changes to prove it is not inferior to alternatives.

Donate here: Stronger than Sarcoma

That’s all for now. I’ll keep writing when I can — there’s so much more I want to share with you. For now, here are a few of the mantras that I have held especially close in these past few days:

  • Hope. Every time there is fear, let there also be hope.
  • Breathe. Plain and simple.
  • Flip the script. Nadir just means that chemo is working.
  • There has to be room for more. Like mohawks.
  • Everything changes. That’s apparent from just one round of chemo.
  • Put the weight down. Take each moment as it comes.
Pre-mohawk — I’ll work on getting more mohawk pictures for y’all ;) (ok, they’re for me, but why not share ‘em?)

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