Interview with Cyril

cyril

I know people have been waiting for an update, so I agreed to an interview by my good friend Cyril the salamander. Normally Cyril hangs out on my work computer, but he’s come home to look after me while I recover.

CYRIL:
So Elliot, how are you feeling?
ELLIOT:
Thanks for asking, Cyril. It’s been two weeks since my gall bladder surgery on July 16, and I’m doing very well. Discomfort is minimal, and even the hiccups I occasionally get don’t hurt they way they used to. I’ll be transitioning from Percocet to ibuprofen this week, so I should be able to drive again soon.
CYRIL:
That’s all good news! Any issues at all with recovery from the surgery?
ELLIOT:
Not really. I’m getting my appetite back and enjoying Indian, Peruvian, and Middle Eastern dishes. My doctors want me to start fattening up, since I have lost a lot of weight (about 14 kilos). The incisions are healing properly, and I’m sleeping well.
CYRIL:
What about that itching?
ELLIOT:
That was my one concern, because the whole point of removing the gall bladder was to stop bile from leaking into my bloodstream and irritating the nerves, which caused the itching. But post-surgery, my bilirubin levels were still ridiculously high. When I was first diagnosed, the total bilirubin count was 13—normal is in the range of 0.3 to 1.0! It dropped to 12, and the surgeon released me from the hospital when it fell to 9. But they wanted to keep tracking it, because if it didn’t continue to drop I might need another procedure to drain the bile. I certainly didn’t want to check back into the hospital, have another procedure, and possibly delay cancer treatment. Thankfully blood work on July 27 showed I was down to 5, so it looks like none of that will be necessary.
CYRIL:
What a relief!
ELLIOT:
You said it.
CYRIL:
So what are the next steps?
ELLIOT:
Once I’ve more or less fully recovered in another 10 days or so, we’ll start cancer treatment.
CYRIL:
And what’s that going to be?
ELLIOT:
Good question. We had our first oncology meeting July 29 with a George Washington University Hospital doctor. He confirmed the recommendation from the NCI researcher my NCCIH colleagues connected me with. Apparently pancreatic cancer responds best to chemotherapy, not radiation or immunotherapy. Recent clinical trial results of a four-drug regimen called FOLFIRINOX have been so promising that we’ll only explore an experimental treatment if I don’t respond to this standard treatment.
CYRIL:
How does this treatment work? I mean, what’s the process like?
ELLIOT:
It’s a six-month regimen, with drug infusions every two weeks or so. I’ll be getting a “port” for the drugs, much like your car has a fuel line for gasoline. Larger doses will be infused over the course of two days using a small pump that hooks on to my belt.
CYRIL:
Any side effects?
ELLIOT:
Quite possibly—anything from nausea to diarrhea or neuropathy (numbness or tingling in the extremities). But the doctors say that treatment has improved greatly just in the last few years. Most of these possible side effects are “unacceptable” and easily treatable with medication. And my relative youth and good health suggest I should respond well.
CYRIL:
Glad to hear that. And now the $64,000 question: What’s your prognosis?
ELLIOT:
Of course, it’s impossible to say. We’ll know after a few months how well I respond to chemo. The doctor describes the drugs’ effectiveness as akin to the half-life decay of some unstable elements: Basically, the first batch of doses is expected to kill 90% of the cancerous cells. The second batch is expected to kill 90% of the remaining cells, and the third batch 90% of what’s left of what’s left. So really, we’ll have a good idea of success after the first batch.
CYRIL:
I see.
ELLIOT:
The numbers are sobering. With this treatment, median survival is 11 to 12 months. That means only half of patients survive a year. The doctor did point out that many who do not survive are older (in their seventies) and/or heavy smokers or have other health problems. So there again my prospects are perhaps better than most. Assuming everything goes as well as possible, I still won’t be “cured”. The best to hope for is to live with the cancer in remission. Remember, apart from the bile issue it’s not actually affecting me right now. If we can just keep things status quo, I can conceivably live with a cherry-size tumor indefinitely. Also, we have a second oncology appointment with the Lombardi Cancer Center on August 10. We’ll see if they have anything different to say.
CYRIL:
I guess that covers everything. Thanks for the update!
ELLIOT:
My pleasure. Thanks to you and all my supporters out there!

5 Comments

Donna Ramos

Blessings to you

Dearest Elliot,

I, of course, have been pondering for days about what to say to you about all of this. I am just so sorry….for you, for your family and your friends. And I am also so grateful that you are willing to share your journey because all of us will learn some valuable lessons from you. Some of the most amazing lessons in my life came through being with Bill while he was facing his own death. He, like you, faced the prospect of surgery, chemo, radiation, more chemo with courage that was inspiring. He demonstrated every day that his life was for living—it was as much for the people around him as it was for him. He never focused on his disease and even made us laugh about some of the indignities that are part and parcel of this disease and its treatments. 

I know that you know there are many blessings to be found in difficult times. I am praying every day that you find them and that they hold you up when that's what you need.

Sending love,

Donna 

Elliot

Hi Donna! Thanks for your

Hi Donna! Thanks for your support and care. It is indeed difficult to know what to say about such a random, crazy happening. I'm trying to be as open as possible, both because I believe in truthfulness in general and because mystery just makes things more awkward. ("What's going on with Elliot?" "I don't know—should we ignore it?" etc.)

(There are exceptions, of course. I was playing in a bridge tournament tonight, and someone I don't know greeted us with a generic "How're you doing?" I decided a simple "Fine, thanks." was better than "Dying of cancer, thanks.")

My other guiding principle is to remember that everyone responds differently to situations like this. Some people will cry, others will be cheerleaders, and still others will be silent because they don't know how to react. All these responses, and many others I haven't mentioned, are fine with me. I want everyone to be honest. I know my family, friends, and colleagues—you are all wonderful, supportive people. So I don't care how that is expressed. I'm just grateful to have you in my life.

Both you and Bill are inspirations to those of us lucky enough to know you, for how you have lived life and how you have faced death. Thanks for joining the conversation here. Don't know when I'll be in California again, but hope to see you then!

Elliot

Dear Roberta—thanks for

Dear Roberta—thanks for leaving such a lovely message. Of course I remember you and Jim, and I'm glad and grateful that my parents have such wonderful friends. Hope you can turn the tables soon and rake in more of those chips!  🙂

Roberta McGregor

A Friend who Cares

Dear Elliot,

You may not remember me, but my husband worked with your father many years ago and I continue to play poker with your parents.  I might add that your dad usually takes most of my money, but I still enjoy playing.

I have been reading your Web page and I want to share some of my thoughts and feelings.

First, I cannot express how sorry I am that this has happened to you. I am a nurse and currently teaching at GMU and throughout my career I have seen many medical miracles. I say this because I want you to believe in them too! Through my practice I have continued to ask the age old question, "Why do bad things happen to good people?"

Second, your site is extremely well done. You sure have a creative talent. I have kept up with your "story" and you are the most courageous person I have ever known. Many people "speak" to courage, but you are living it every day, not only for yourself but for your loving family as well. There are very few people who can go through what you are going through and at the same time think about and support your family. The other person I knew with this quality was my husband. 

Third, I want you to know that as a Christian who believes in miracles, I am praying for you every day. The power of prayer has been proven empirically, so I believe that God is watching over you and your family. 

Blessings to you and your family,

Roberta McGregor

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.