Friday, May 23, 2008

A Big Leap Forward

It's the start of a long weekend, and I really wish I was out partying on this Friday night, but it's been an important and emotional day and I'll probably be out and about this weekend, so if I have to bite the bullet and make it a couch potato evening, so be it. I'm going to need the energy for the weeks ahead anyway.

This morning we met with the folks at Stanford, and it would be an understatement to say that it was a life-altering meeting.

As I mentioned previously, Lou managed to get me an appointment with Dr. Charlotte Jacobs, one of the foremost experts on sarcoma, which is a fairly rare form of cancer. Dr. Jacobs' schedule had been booked for the next three weeks, but after speaking with Lou, she graciously offered to see me this morning, just two days after Lou placed the call. So this morning I arrived at Stanford with my mom, my dad, and my step-mom Mimi to see what the Stanford folks had to say about the situation.

We first met with a medical student who performed the standard round of medical checks (the blood pressure, the temperature, slapping my ass to check for redness -- the usual stuff) and took a complete briefing from me on the history of my case. After thoroughly going over my current health situation and my medical history, he left to discuss the information with Dr. Jacobs, giving my parents, my 'bonus mom' and I some time to discuss my predicament amongst ourselves.

This is the first time we'd all been in the same room -- Mimi included -- since we got the big news last week, and there wasn't a lot of productive conversation that occurred on that day, in no small part because I was whacked out on 4 MG of Xanax after being informed that I had a very large cancerous tumor in my stomach.

It was an interesting convergence of parental power. Mimi has been down this road before, having lost a son (my step-brother Michael) to illness over 10 years ago, so this situation brings back a lot of emotion and feeling for her, but it also adds great power to her input. My dad, ever positive and philosophical, is focused on the step-by-step nature of this process, and how things need to run their natural course, making sure to provide needed perspective to my mindset when I get frustrated at my lack of control of this situation. As for my mom, well, she is the ultimate mother hen, now living with me, taking care of my every need, and being the indispensible protective shield that really only a mother can be. There's no way I'd be getting through all of this without her living here to just simply be my mom.

Each parent has their own role to play, and today, while waiting for Dr. Jacobs, we talked a lot about my positive outlook towards my battle, the incredible power of positive thinking, and the fact that a lot of people are far worse off than I am. I have a lot to be thankful for -- I've got an incredible support system, and a ton of cancer patients don't have that. I can't even begin to imagine what they're going through.

Then Dr. Jacobs entered, and the amazing support system got that much better.

She came in with Dr. Jeff Norton, a surgeon who checked out my stomach, asked me some questions, and then declared pretty plainly that we were going to need to surgically remove this bad boy in fairly short order. Before we can move forward, he said, we'll need the aforementioned high-def scan of my stomach so we can see quite clearly where the main problem areas are. This is pretty much the same thing Dr. Upadhyah told us yesterday, so it wasn't new news per se.

The real illumination came when Dr. Norton left and Dr. Jacobs got down to business. She patiently and clearly explained to us everything we needed to know about sarcoma -- it's a pretty uncommon form of cancer (it only strikes about 8,000 people a year), there are many variations of it, surgery is the typical form of treatment, many variations are responsive to either chemo or radiation or both, and that while there can be a genetic component, sometimes it just happens.

"Your diet did not cause this cancer, and your diet will have no effect on its spread or its treatment," she said at one point, and you could hear the sighs of relief from thousands of Taco Bell franchise operators across the country.

What quickly became evident was that this is Dr. Jacobs' area of expertise, no question about it. She had pretty definitive answers for all of our questions and reiterated the likely treatment protocols that our other doctors had mentioned: either surgery and then chemo/radiation (although according to Dr. Jacobs, radiation therapy is the preferred method for most sarcomas before and/or after surgery), or radiation first and then surgery. She wants to do the surgery first, and so do I, but we've got to make completely sure that it's the right thing to do, and we won't know that until next week.

She also told us a little about Dr. Norton, including the very small detail that he performs five to 10 large-tumor operations, including operations on sarcomas, per week.

To top things off, we discussed the very sensitive area of insurance and how to best get the insurance company to pay for this treatment. Dr. Jacobs graciously cut the cost of today's consultation (paid for out of our pockets, because it happened too quickly to be authorized by my insurance company -- if they'd even authorize it in the first place) to the bare minimum, meaning I got a refund of some of my pre-payment on my way out the door. Finally, she promised to work with my GP to get as many of the tests and scans, as well as the surgery itself, authorized by the insurance company if at all possible.

The bottom line here is that we couldn't have hoped for a warmer, more humane, more informative, more hopeful visit with a physician than we got today. Dr. Jacobs is just simply amazing; I can't put it any other way.

Let me be clear: this has nothing to do with Dr. Cecchi or Dr. Upadhyah, who are professional, competent doctors and excellent physicians in their own right. The visits we had with them made me feel like I am going to beat this disease, and their help and information was a major part of this process.

But as I left the examination room with my family after meeting with Dr. Jacobs today, I had tears in my eyes. I am carrying a very complex and rare disease in my body, and today I had an expert on the subject consult with me and join my fighting team. Next to her, I have a surgeon that is amazingly experienced in removing the type of cancer I have, and is an expert at removing these sarcomas. So it's not that my previous doctors aren't experts; they are, but just not in the area of sarcomas, which is of paramount importance in this situation. Having world-class physicians now on my side, getting ready to jump into battle with me, well, I can't describe what that means to me.

Dr. Jacobs, Dr. Norton and the Stanford Cancer Center are now part of my team. My mind-set was positive before, but the jolt of confidence this gives me is immeasurable.

Oh, and to top it off, Dr. Jacobs called me while we were having lunch after the consultation to tell me that my GP, Dr. Stewart, had agreed to authorize any and all treatment through the Stanford team. Now, the insurance company is still going to fight this tooth-and-nail because it's out-of-network, but with my GP on board, at least this will be an easier fight for us.

And, of course, the real fight, the only one that matters, is the one for my life. As we collectively exhaled outside the examination room following the consultation, my dad mentioned something to the extent that all the positive energy, prayer, thoughts and good vibes you've all been sending me for the last 10 days have converged to produce this moment. It's like a focused light shining down from above, showing us the way, he said, and with that I agree. Good things do happen when you focus on it, and that's what happened here.

Dr. Stewart called me as we were driving home to let me know that he was going to do whatever he could to help us in the insurance battle, but that we are going to have to probably raise a bit of hell ourselves to make sure they cover as much of these procedures as possible. That's fine; we can do that. That's really the easy part when compared to the battle ahead of me. As Dr. Jacobs said, there may be some twists and turns in this fight, and I have to be prepared to change course if and when it becomes necessary -- but that's been my mindset from the beginning. I'm not expecting a cakewalk, and never have been; this is some serious stuff I'm facing. I'm probably going to go through quite a bit of pain and misery before coming out on the other side. But I WILL come out on the other side, and that's all that matters.

Dr. Stewart left me with this: "Get out there and enjoy the weekend, enjoy the sun, and have a good time, because it's probably the last weekend you'll get to enjoy for a while." True enough. If the tests are completed expediently, I could either be in surgery or radiation (or even chemo) as early as next Thursday or Friday, although Dr. Jacobs thinks that if we do the surgery without any radiation prep, it will most likely be the week after next. Regardless, the next steps have been taken, the battle itself draws ever closer, and the down-and-dirty fighting will begin before I know it.

So yeah, I will definitely get out there this weekend and enjoy life, knowing that things are going to change pretty darn quickly once the holiday is over. Maybe tonight I'll give the new EURO 2008 soccer video game that Jaap so kindly sent me a good go, but mostly I'll be outside, soaking up the sun, spending time with friends, and enjoying everything life has to offer. I may even have a beer or two.

And, of course, I have to go see the new Indy flick. I saw Raiders of the Lost Ark in the theater six times; I know the movie by heart. I saw both Temple of Doom and Last Crusade on opening day. I would have snuck in a viewing of the new movie on opening day this time but, well, Thursday was a big day, and some things are more important than my favorite fictional archaeologist. But still, I'll make time to see Harrison don the familiar fedora; I've been waiting for this one for a long time.

Man, can I drone on or what? Time for me to go try out this new video game. Two quick, specific call-outs: to Lou, your intervention literally changed the course of my treatment, and you will never know the bounds of my thanks. And to Amy, my cancer sensei, the LIVESTRONG binder arrived today -- thanks for arranging that, and you continue to be an incredible inspiration to me. I will sweep the leg on this thing, oh yes I will.

To everyone else out there reading, know that I love you all -- and with that, have an amazing holiday weekend, keep the positive thoughts and love and prayers coming, and whatever you do, please make sure to take a moment to draw in a deep breath and just enjoy life. I'm not gonna get all preachy about taking advantage of every waking moment or anything like that, but if you can, take a sec to appreciate who you are and what you've been given. I know I have, and even given my current circumstances, I've know I've been pretty darned blessed in a ton of ways.

Happy Memorial Day weekend and I'll catch up with you soon.

With much love,
Dino

10 comments:

Matthew said...

Great news Dino. We're thinking of you here at the Matt Bendett, Roy Stigall, and Gary Treangen residence. You and Amy are inspirations to us all.

Looney said...

Wow! That's exciting, dude! F*** the insurance company and f*** the cost. This is your life :-)

Euro 2008 is out already?? Or do you have connections?? Dangit, I'm gonna have to go get it, then I'll practice here, then we'll play and... well, you'll prolly kick my arse...

Dino said...

Anthony -- I think it's out already... but I do have a few connections left here any there... :)

Mathew said...

This doctor jacobs sounds great... I mean she's fucken like the jonas salk of sarcomas.

Have a great weekend. sunny thoughts comin atcha from sunny (if memorial day-less) canada.

Lisa said...

Love to hear about her reducing her price. Makes me proud to work in healthcare! You must have wooed her with those Big Dogg Baby Blues :)

(and she knew it was the right thing to do!)

xo
Diva

Looney said...

Alright, I'm gonna go get a copy and bone up (heh, that woulda been better with your previous post...) then if we manage to get together, we'll mix it up...

So, Spain or Croatia? I think it's one of them...

Francesca Giessmann said...

Dino: You are totally in the right place and frame of mind... and having the support system of friends and family is just as equally important as that SUPER duper sarcoma expert ... do you want to know something funny?... I actually have missed MY Lymphoma expert once all my treatment was done... I had such separation anxiety!!! It didnt hurt that he was cute and charming and with a french accent ...
listen my friend ( I have a rule: friends of friends are automatically added as my friends ) so , take good care. .keep the positive energy... IT DOES HELP ... its part of the mix.. trust me! Following you and your journey!
and sending you great energetic vibes... BACK OFF CANCER!
much love
big kiss
Francesca

Amy said...

Dino,
I see you have been "Francesca'd" and can I just say she is wonderfully inspirational. You're gonna love having her on your side and as your friend. She found me, long story (but it is on my blog, May 11th post if you're interested) and I am glad she did. Silver linings...see, they are around.
Hang in there this week. I'm so proud of you! amy

Dino said...

I love the fact that Francesca has found me and continues to leave these notes of love and support! She's already family like everyone else that's been reading! :)

Cindy said...

Hey Dino, I've been reading your blog and wishing you well. I'm a friend of Lisa's and a fan of Mirror Image. I was surprised and happy to read that Dr. Jeff Norton is performing your surgery - he and his team did abdominal surgery on me back in 1999. Just thought you'd want to hear from a satisfied customer/patient :) My best to you. My thoughts and prayers are with you. Keep up the fight and stay positive! Your blogg is awe inspiring -- both for your great writing style and for your journey.... Keep writing, I'll keep reading.
--Cindy S.