It has been awhile since I posted in this blog. We primarily shifted updates to the facebook group simply because it is easier to access, but in some ways I like this format better.
Our last update was that my July PET scan was clear... with caveats. As with any cancer, it is important to keep up with regular checkups and scans, which we have been faithfully doing. I had a chest CT conducted in September which was clear (same minor concerns from July with no changes). The next CT was done in January. I could tell from the tone of voice when the doctor called with the results that it was NOT good. They scheduled me for the next available PET scan to see if there was potential malignant activity. After the scan was done, they told me not leave the building as it was being immediately read. Naturally, I assumed this was to keep up their reputation for outstanding patient service and was no way an indication of the medical urgency 🙄. The next step was a trip to the pulmonologist who scheduled
 |
| Ready for my robot parts installation |
me a trip to dreamland for a lung biopsy. Results for the biopsy came in that Friday and confirmed that the HPV P-16 squamous cell carcinoma from my tonsils had metastasized and found a new home in my right lung.
So what are my treatment options? I am starting off with poison...errrr...chemotherapy. To prepare for this, I had another port installed in my chest for easy access to my jugular. I may have told some kids at the karate studio that the port was part of my transformation into a cyborg, and now, they all think I’m becoming a robot (they are very excited about the martial arts implications).
 |
| And so it begins... |
My first dose of Erbitux and Carboplatin was yesterday, and I have a pump that I get to carry around for the week in a snazzy fanny pack (they are stylish again!!) to give me a continuous dose of 5FU (I bet you can’t guess how I remember that drug’s name). My first indication of hair loss showed up in the shower drain this morning (Baldness is coming!). Anyone who had the misfortune of knowing me in boot camp or OCS can vouch that I have a terrible bald head. I hate hats
 |
| Jeff rocking the bald look |
but will be investing in a few. We had a birthday party/Farewell to hair cookout last weekend, and my son, Jeff, shaved his head in solidarity. It was appreciated, but he can pull it off... you can’t. Please don’t.
Radiation (including proton for everyone watching commercials) and surgery are not options at this point because it is a metastatic cancer meaning that it has escaped the confines of my throat, and we will likely be playing whack-a-mole with it from here on out (it likes to nestle down in lungs, bone and brain). This is not a curable condition. If the platinum based chemo fails, there are some immunotherapy avenues we can explore in an attempt to contain the cancer. Anyone interested in prognosis should understand we are in Han Solo odds territory (Never tell me the odds!).
 |
| I'm bringing fannypacks back! |
However, to expand my potential options, we visited a Vanderbilt oncologist yesterday for a second opinion. The general prognosis was about the same, but Vanderbilt may have taken a slightly different approach to my initial treatment. We signed up to be screened for a potential clinical trial for a new phase I test (really early stuff). There are some tests that will need to be done first to see if I am a good fit for the trial. With the exception of cancer, I’m in the best shape of my last 20 years, so my personal (and completely unqualified) assessment of me is that I would
be a great test subject for something new. There is no small amount of cognitive dissonance with feeling so healthy and being given a dire prognosis, but that is how it goes.
Carmen and I are staying upbeat and focused on solutions. We appreciate your support, but please don’t send in the last rites brigade. Also, for everyone who is convinced that Big Pharma is only trying to keep us sick, please understand that you don’t know what you are talking about, and I will treat your comments accordingly.
Here are a few snapshots from our Farewell to hair party.
 |
| Graham and Duncan putting on their crazy hair |
 |
| Our little leprechaun, David |
 |
| Alex rocking his swinging 60's hair |
 |
| Jeff and Ryan |
 |
| Tiger-Rock instructors, Michael, Jake, and Bryson came ready to show some love |
 |
| David's fro-yo! |
It has been awhile since I posted in this blog. We primarily shifted updates to the facebook group simply because it is easier to access, but in some ways I like this format better. 
My first dose of Erbitux and Carboplatin was yesterday, and I have a pump that I get to carry around for the week in a snazzy fanny pack (they are stylish again!!) to give me a continuous dose of 5FU (I bet you can’t guess how I remember that drug’s name). My first indication of hair loss showed up in the shower drain this morning (Baldness is coming!). Anyone who had the misfortune of knowing me in boot camp or OCS can vouch that I have a terrible bald head. I hate hats 
be a great test subject for something new. There is no small amount of cognitive dissonance with feeling so healthy and being given a dire prognosis, but that is how it goes.
Aww man...I thought your hair was awesome at OCS. Mine was far uglier...I mean you recall they left us gals with like an inch and a face and I looked like a rooster...
ReplyDeleteyep I understand the whole big pharma thing...I'm always in conflict with people about vaccines. I know the hpv stains are different but I've had two positive tests that cleared up. Once back in 2001 before deployment and once again oi 2016. Not sure if the virus just resurfaced...but I am lucky it cleared up. I am pretty sure that the kids are gonna get the vaccination series. I have not had to endure anything like you, but the biopsies and scraping of my uterus to check for cancer was not fun. Ryan...MAY THE FORCE BE WITH YOU#
Does treatment interfere with your enjoyment of certain adult beverages?
ReplyDelete