Tuesday, August 23, 2011

Conversations with a surgical oncologist

Monday I had an appointment with a surgical oncologist, Dr Serene Perkins at the Good Samaritan in downtown Portland.  Actually Monday was yesterday, it doesn't feel like yesterday.  It feels like about a week ago. It was a little bit of an emotional day to say the least.  Here is what they said.

The very first thing she said is "You are the youngest patient I have ever seen with cholangiocarcinoma."  My reaction, "I haven't heard that one yet." Both of us with a giant smile on our faces.  I liked her already.  Not only was she pretty and reminded me of my girlfriend Karin from Seattle, but she was smiling and that, for me, is just an instant winner.  If you have ever had to deal with a lot of doctors you most likely have already noticed this, or maybe it is just me, who knows, but it is a pretty rare occasion when your doctor is walking around with a giant contagious smile on her face.  Especially one who's next words were something like this, "I'm going to give it to you straight (again, a woman after my own heart here) I cannot operate on your liver to remove the tumors because every lobe is affected and you wouldn't have any liver left over.  BUT, there is someone I want you to talk to who is a radiation oncologist who has this new (just out of study and now available) awesome cutting edge therapy that I think you should start immediately."  Wow!  At first I must admit that I was disappointed.   I wanted her to tell me that she could operate now and that they can remove all of the tumors and my liver will grow back in 6 weeks and everything would be awesome, that basically I would have a brand new liver!  After all, I was at the surgeon's office, where they perform surgeries talking to a surgeon.  Why would I think otherwise?  Actually, I knew otherwise because Shao had mentioned to me that she wanted to talk radiation, but DANG IT I wanted it to be different.  I knew what to expect, the meeting went pretty much exactly as I thought it would but yet I wanted it to be different.  I wanted the fairy tale story book ending, where crazy miracles happen and young ladies with liver cancer magically get healed.  I know that this is actually great news! That there are awesome doctors out there who are specialists in my type of disease who spend their spare time talking about me and my case wondering how they can help me the best.  I'm an anomaly.  People who get cholangiocarcinoma are usually much older, most often they are men, and often have other liver troubles or other diseases that have led to cholangiocarcinoma (CC, it's a long word folks:).  They are not usually 38 year old, active females who has never had anything more serious than a broken arm when I was about 7 and a little bout with salmonella when I lived at Crystal Mountain back in the early to mid 90's (let's just say that little dorm fridges don't work very well at keeping chicken frozen apparently). The doctors are all very pleased with my progress.  It would seem that I have been doing an unexpectedly exceptional job at assassinating those cancer cells.  Dr Perkins said that I have had an amazing response to the chemotherapy and that people don't usually respond as well as I have but that the effectiveness of the chemo is reaching its end and I am already on the lowest dose possible meaning that I cannot (nor do I likely want to) have a higher dose unless I want to risk other complications such as kidney failure, bone marrow damage, permanent neurosis which I have found to be quite unpleasant and painful, and a slew of other highly undesirable physical and mental troubles.  She is also very optimistic about the new treatment and suggested to me that I should begin it as soon as possible...and perhaps we will be able to talk in the future about surgery. That is what we are hoping.

The therapy....so far what I know (which isn't that much yet as I have not been scheduled to see this new doc yet) is this and it sounds scary but very effective so sign me up.  As I see it (I'm always trying to find the positive in even the crappiest of situations) this is an option that wasn't even available to me a year ago, I am making progress! Now it is proven!
The treatment is called Yttrium-90 and it sounds like a good thing to me.  The doctor that I will be meeting with is the only one in the city that does this treatment and he also just happens to be very highly recommended and respected by the surgical oncologist being a pioneer of this promising treatment.  Yes, I said promising...
I am not going to lie or pretend to be all tough or uber-optimistic right now, I am a little bit freaked out.  Catheter?! Where?!!?! Radiation actually inside my body! Crazy! Insane! Even though as crazy and insane and scary as having a catheter inserted through your pelvis into your liver so that you can feed radioactive spheres into your liver to kill cancer cells sounds the thing that scares me the most is that this actually sounds promising to me.  I am becoming hopeful that this will be the thing that delivers the last punch to those rogue cells causing havok on my body and my liver! The scary part is if I get let down...we all know how it feels to be happy and hopeful about an anticipated outcome of a situation, most of us also know how it feels to be let down in such occasions and how devastating this can sometimes be.  I mean, look at how much I got freaked out yesterday at expecting to have surgery (you know the happy ending where they cut it all out and my liver is happy and cancer free) instead of radiation and catheter that is uncertain, invasive and scary.
Actually I worry about being too excited or overly hoping for a certain desired outcome (of course never trusting or being fully present for the process what so ever) pinning everything on it and having it be ineffective, thus rendering me a blubbering, irrational, emotional slob for a few days/hours reminding Jeff how lucky he is to be with me...

Or better yet, I can focus on all of the positive! All of the awesome specialists and doctors and nurses I have looking out for me, talking about my case, trying to figure out what they can do to help.  Instead of feeling like the situation is crappy and lame because I am the "lucky" individual who happens to get a rare form of cancer at a young age....I can see it as at least I am "lucky" enough to be young with a rare disease that catches peoples attention and, much like House, provide them with a strange and interesting puzzle that they are dying to figure out.  I am "lucky" enough to have some awesome doctors on my side, my team, which happens to be comprised of specialists, natural and traditional medicine, awesome nurses and aside from all of the titles and formalities just down right good, no, AWESOME people I have working on my side, fighting for me!  This is how I would rather see it.  My choice is the positive.  I decided long ago that I was not going to waste my time and energy on worrying about all the things I may not get to/can't do.  I would rather spend that energy on doing it and making sure it will happen.

Cancer Can Suck It!


  1. This new treatment sounds like it could just be the thing that's worth a try. I'm glad you are cautiously optimistic; you're just being a realist. I know the idea of radiation in your liver is scary, but if it can kill the cancer cells, that would be a blessing!

  2. Well Laura, I eagerly read this post hoping, too, for the fairy tale. But reading your link I think this sounds promising. John had internal radiation, where they endoscopically inserted a radioactive "string of pearls" into his bile ducts. It sounds like this is a little different than his treatment, but similar. His experience wasn't bad at all. Unlike the external beam radiation, he wasn't in nearly as much pain with the internal.
    Way to be so positive. This is a major step forward. Let yourself soar with this good news, and don't protect yourself from any future letdowns. That kind of thing only denies the hope that could fill this moment. This WILL work.

  3. Thank you both ladies. I know that it is going to work also, I think that any time we get into a routine (even with chemo) it is scary to make a major change, right?
    Kim, that would have been perfect, huh? Especially right after I finished reading your book and how happy your (and John's too of course) ending was it would have been perfect!
    Beth, it is scary to me. I think that it is going to be just fine though. As a matter of fact, it is going to be just what I needed :)

  4. Thanks for sharing this Laura. Radiation sounds like a step forward and you will move into it just as you have with everything else, with courage and optimism.
    Love you!
    Big San

  5. Thanks San :) I love you! Yes! with courage and optimism because it is going to be effective and wonderful and as mama Lynda once said about her fathers heart stent operation "with grace and with ease". That is how radiation and the catheter will be done, with grace and ease...and be highly dangerous to those rogue cells and effective at assassinating them. It's a war here people! Time for the heavy artillery!

  6. I decided to share this because i am so glad today and happy that i am alive to see another new day and not just that but also to share the goodnews of how i survived a deadly stage 4 cholangiocarsinoma (bile duct cancer). I was told by my oncologist that i had just 6 months left to live and i was so scared to lose my wife. I was lucky to contact Dr Mrs Aleta who i told all about it and she is the nicest person i have spoken to. She recommended a herbal medicine for her which she took that cured her in less than a month. Well for more info about the medicine and cancer treatment simply reach her on aletedwin@gmail.com she can help you too. Contact her for any form of cancer too.