In the last Cancer Letters, I wrote about praying and planning. Today's letter seems to be about educating myself, and attitude.
Dr Supple advised me to go downtown for the liver resection surgery after he reviewed my initial CT Scan results. USC or UCLA. A tertiary care hospital. That is, a hospital specializing in cancer management. Before all this happened I couldn't have told you what a tertiary care hospital is. I can now.
He gave me phone numbers to USC and UCLA. I called both, to arrange consultations. I received a letter of introduction from USC which started out "On behalf of the Doctors of USC, I want to thank you for calling on us to partner with you in your healthcare". The key to the phrase is- "...partner with you...", it means you are basically invited to have a discourse with the Doctor, and have some say in the decision making process. This was new to me. Monday, Oct 15th 2012, I met with a surgeon at USC's Keck School of Medicine. I walked out of there feeling like I really didn't know what was going on. I didn't know enough about what was happening. Out of fear, I'd apparently had my head somewhat in the sand. Up to this point I had only gotten advice from well meaning friends, the friendly Docs back home, and some basic info off the American Cancer Society website. It was time to look this thing dead in the eye. This was a whole new ballgame. And I needed to step up to the plate.
So in the two days prior to my UCLA appointment, I immersed myself in the Google. Found a website called NCBI Pub Med, where there is data from all kinds of institutional medical study's. I searched everything I could find on Gallbladder Cancer. I looked up the words I didn't understand and used the Google pronunciation tool to learn how to pronounce some of the medical terms. Initially it was pretty scary reading. But after a while I became somewhat desensitized to it. Became interested. And by my Thursday consultation at UCLA, I was a full-on student of the treatment of Gallbladder Cancer.
Here's a sample from Pub Med of one of the studies I poured over- https://www.ncbi.nlm.nih.gov/pubmed/16724356
A few days later I wrote this letter to a friend who, in confidence, told me he was a cancer survivor. Reading it now, it seems that the process of steeling myself to whatever was looming, was well under way.
On Oct 22, 2012, at 4:12 PM, richard wrote:
My Cell is (805)709-----. I gotta get out and come see you.
Wow! Ok, first of all, you got it... I'll keep what you shared with me in confidence. I can respect that. I think I'm finding out why you feel the way you do about it. People respond differently to the topic, as I'm sure you know, and their responses do wear on me at times. I've been pretty open about it so far but I think that's part of how I deal with it. I'm glad you shared your story with me. I know you understand. I could never have empathized with another person about this, without the actual firsthand knowledge of this experience. I couldn't have even imagined what this was going to be like. I'm only a month into this journey. I believe my eyes have been opened big time.
I'll share with you my story...
I had my gallbladder removed in September due to gallstones. ...I had no idea they were even doing a biopsy. I went in for my after-surgery follow up appointment and Doc dropped the bomb on me. I was caught completely off-guard. T2 Gallbladder Adenocarcinoma. I asked him what that meant, and he said, "you need another surgery with in two weeks to remove part of your liver and the nodes around it". He handed me the pathology report. I couldn't believe it. I was still sore from the last surgery and he was telling me I needed to get cut again!!
At first I thought he must be lying or something. I felt nothing at first other than not wanting another surgery. After I got outside I started shaking a little bit, but managed to calm myself so I could go back to work... Later that day I read up about it on the American Cancer Society website and got pretty upset. It's not good.
After the CT scan my Doc said he felt I need a surgery beyond his expertise. That worried me a little because in my book he is a great guy and a really good doctor. He also told me Los Robles Hospital couldn't support the type of surgery I need.
So since that day I have been coming to terms with the uncertainty. More appointments, lab-work, CT scan, referral to USC and UCLA, waiting for calls from them, feeling like I'm super busy and at the same time feeling like nothing is happening at all. As it happened I did not have surgery "within two weeks". It's been a waiting game. I understand what you mean about CT Scans. That was the hardest three days... waiting for the scan results. That was murder, to put it bluntly.
Last week I went to both USC and UCLA. I will hopefully have the surgery soon. For this type of cancer I have learned the "resection" is the only thing which will give me a chance at a good prognosis long term. The big guys also said Chemo or Radiation may be in my future. But we won't know until after surgery.
In the meantime, I've had some fun with this... I told my girlfriend she could call me "Pumpkin". Because I'm going to get carved up like a Jack-O-Lantern!! And I have also done some creative things. I had a dream about a song (seriously, it was weird) five days after I was diagnosed. I wrote it down and me and Ed Kasper shot a video of it. It's called "Please Don't Leave Me". It's really for my girlfriend. But I'd love for you to hear it. Ed's going to put it up on youtube as a Whiskey Glass Eye video, but I don't know when. I do have the audio on a cd though.
Well, in closing, I'm glad -- told you. You were already an inspiration to me as a person and guitarist. Now even more-so. Although I wish neither one of us had to experience any of this, I'll think of how you fought, if I feel down. I know this is going to be a motherfucker of a fight. And I've got plenty of people on my side. I appreciate your vote of confidence. For now all I can do is show up, and bring attitude. And I'm doing it man.
All the best, Brother
I am forever grateful for the support of friends, survivor friends, and family. But I really wanted to talk to somebody who had beat Gallbladder cancer, specifically.
Around this time, in October of 2012, I found in the Livestrong Guidebook an organization called Imerman Angels whose mission it is to connect newly diagnosed cancer patients with survivors. To me, one of the neatest cancer support organizations. I desperately wanted to talk with a survivor. To find out what I could expect. And to find out how they approached treatment and dealing with figuring all that stuff out.
Thank you for submitting your question to us online. Case #00025195: "Request a Mentor Angel" has been created and an Imerman Angels Connection Specialist will follow up with you as soon as possible.
1-on-1 Cancer Support Team
As it would turn out, it would take some time, Imerman would have to find a survivor thru the RA Bloch Cancer Foundation. Gallbladder Cancer being a rare disease made one a little hard to find apparently. They did find somebody eventually, and I found new pen pals thru this network. More to come on that on down the blog...
The Ronald Reagan UCLA Medical Center
One of the NCBI Pub Med studies I... studied ;)
Cancer Letters #3 featured a video of the 2012 song I wrote five days after diagnosis, "Please Don't Leave Me". Here is the song rewritten for 2019. "Please Don't Go". The song now has three movements- Movement 1. 'The Dream'. Movement 2. 'Looking Back'. Movement 3. the guitar solo- 'Remission'.
"Please Don't Go"
Salty Rose, 2020