who is in charge?

christopher william holt bio photo By christopher william holt

Walter White: The hell with your cancer! I’ve been living with cancer for the better part of a year. Right from the start it’s a death sentence. That’s what they keep telling me. Well guess what? Every life comes with a death sentence. So every few months I come in here for my regular scan knowing full well that one of these times, hell! Maybe even today, I’m gonna hear some bad news, but until then.. Who’s in charge? Me! That’s how I live my life.

This quote is from Breaking Bad: Season 4, Episode 8 (Hermanos).

walter

My roommate Ben is in the process of rewatching all of Breaking Bad, and so I saw the clip with that quote last night and thought it quite relevant to my recent situation. While my prognosis is much more positive and my cancer is extremely different from that of Walter’s, the bit about being in control is extremely relevant.

With some things, not at all. My October 7th afternoon return flight from Duke was cancelled and then delayed, and instead of getting back to New York to see my friend Maxine perform at Birdland Jazzroom, I got home around 10PM. Unfortunate, but not the biggest of the problems I am facing. I sat with my sister Cristina in the Admiral’s Club and she had 5 glasses of free white wine until we were able to hop onto another flight.

The following week made it more clear who is in charge. Starting from Tuesday:

  • Picturelife team dinner (Nate, Jacob, Joe, Phil, Evan, Myself) at Lafayette (one of my new favorite restaurants in NYC)
  • Dentist appointment (haven’t been in a year, so this is as good a time as any, right?)
  • Neurologist appointment - I was put on Keppra as a prophylactic for seizures in the ER while I was in Chicago, I would like to know if I need to stay on this.
  • Cardiologist appointment - I was put on Amolodopine (high blood pressure medicine) post-craniotomy, likely due to the surgery. My BP has been much better since then, but it’s possible it’s because of the medicine I am on. I would also like to know if I need to stay on that.
  • Deltron 3030 show at Brooklyn Bowl (holy shit, this was amazing)
  • Verizon FiOS install at apartment (thing I was maybe most excited about)
  • Ayn Rand’s Anthem (off-broadway production)
  • Initial Radiologist appointment with Dr. Wernicke
  • Finally, off to the Adirondacks for the weekend.

The outcome of all that..

I have to have a filling replaced and possibly another root canal (i’ve had 4 in my life).

I’m in great neurological health, but need to do a 24hour EEG to check my brain electricity levels before getting a recommendation of staying on or dropping off Keppra, which I’m doing right now!

eeg eeg

My heart is strong, and my blood pressure will continue to be monitored, and I have a follow up in a month to see if I need to stay on the blood pressure medicine. There is nothing of concern here though.

As I said, the Deltron 3030 show was amazing. That’s Dan The Automator on the right conducting the Deltron 3030 Orchestra.

deltron

My scar continues to heal extremely well (This photo from October 10th):

scar update

My FiOS is awesome.

fios

Radiologist appointment went extremely well. Dr. Wernicke is an amazing person and I am again lucky to have added another caring, inspirational, and extremely complete doctor to my team. We discussed tentative schedules for radiation and oral chemotherapy, which should start in a few weeks, and scheduled me for a follow up appointment on October 15th to build my radiation mask (more about that later).

In the Adirondacks I got to chop down a tree for firewood use using my axe that I was given by my friend Antony for my birthday a few months ago.

tree tree

Cathartic.

Back on tuesday to Dr. Wernicke’s office to get my radiation mask built, the purpose of this mask is to make sure my head is in exactly the same position each time so that when radiation is going it is in the same exact place each time. After building the mask they do a CT scan and build the radiation plan and schedule (of which I am waiting to hear back about).

Check out my mask!

mask

I also got to see the titanium in my head from the CT scans they did. It looks like I have little titanium spaceships in my head.

titanium

After the mask building I had another great appointment with Dr. Gaynor, this time my little sister Marisa joined me – she is smitten with him. We did some bloodwork, some meditation, some more discussion about what to expect from chemotherapy as well as a deeper understanding about the supplements I am on. I got a flu shot as well as some B12. My testosterone levels were marked as low, so I’ve been prescribed AndraGel 1% (really? chopping down trees doesn’t help my testosterone???). I also just discovered Dr. Gaynor is on Spotify – Check out the two Introduction tracks.

So today I complete my 24hour EEG monitor, and I should be hearing back soon about when my radiation will start. Once I know that I will be able to build my schedule for taking the oral chemotherapy. All that’s left this week is my follow-up dentist appointment, and next week I only have one appointment schedule with Dr. Gaynor.

Current tentative schedule for radiation is 6 weeks of 5 days a week (10-15 min sessions each day), and Temodar each day for the entire 42 days. Once radiation is complete there will be a continuing of oral chemotherapy that will only be 5 continuous days of the month for 6-12 months. Post radiation I will have another MRI that Henry and his team down at Duke will check out to see my progress, and I will be visiting him shortly after that.

I’m excited to get started.