Wednesday, May 21, 2008

On Tap

"On what day did God create Spinal Tap, and couldn't he have rested on that day?"

Okay, sorry, I don't mean Spinal Tap. (Although I wish I did; I'd much rather be at Stonehenge at the moment.)

Today was a relaxing day, which is sort of a double-edged sword. It's easy to relax, watch TV, respond to emails and such, and make some phone calls while entirely foregoing that distinctly civilized convention that we usually refer to as a "shower." On the other hand, it's another day gone by with a very large and very dangerous mass in my belly.

There were some positives to be taken away from the day, however. First off, Matt's dad Lou has made some phone calls on my behalf and has arranged for me to consult with Dr. Charlotte Jacobs, a sarcoma expert at Stanford, on Friday. It's fantastic having Lou in my side in this fight because he is a radiologist, is well-connected, and knows how to get things done. In this case, he found a Stanford cancer expert that has a full schedule for the next three weeks, and she still offered to see me in two days for a consultation. Amazing.

Secondly, he asked for and received the biopsy pathology report from Dr. Cecchi and discussed some of the options with Dr. Jacobs, the Stanford physician. Lou told me some of what the report describes and while I really didn't want to know too much detail on exactly what was written (as I've mentioned, I'm more interested in keeping a positive focus on beating this thing, and not getting caught up into what it is or how tough it's going to be), he mentioned that at the most basic level, the report suggests that it's likely a liposarcoma of some kind.

Forget about what that means medically; I'll reiterate that I don't want to hear about how easy or hard it will be to beat it, or anything about survival rates, or the like. I know this is going to be a tough battle and don't need to be reminded of it. Instead, what it means for me is that some anecdotal stories that were passed along to me in the last week have taken on a little more meaning. Matt has a PT patient that had a liposarcoma the size of a football removed from his stomach, and he's doing fine. Andrew has spoken with a physician who said that people beat liposarcomas all the time. These anecdotes contribute to my mindset and help keep me going.

As I've written, my situation is different. My liver has been invaded, and other organs are at risk. Of course this is going to be a long, hard battle, and I'm ready for it. But just knowing that other people have beaten this, and that some have done so relatively easily, gives me a shot of confidence, regardless of how serious my own personal battle is shaping up to be.

So, what's on tap for tomorrow? A few things. Dr. Cecchi has ordered another ultrasound. He's out of the office for the next couple days so I'm not sure why, but I'll go in for that tomorrow morning. Tomorrow afternoon, I have a consultation with a surgeon where we'll likely talk about either a surgical biopsy or, more preferably, a surgical procedure that will simply remove a large bulk of the tumor and use that as the basis for a more definitive biopsy, and decide upon a further treatment protocol from there.

Apparently Lou and Dr. Jacobs discussed a similar concept today and I'm sure I'll talk with her about it on Friday. Like I wrote last time, I really like this concept: if it's medically realistic, then let's just cut out as much of the cancer as we can now, and move forward from there. We're going to need to go deeper to get a more definitive diagnosis anyway, so why not just take out a boatload of the crap while we're in there?

Seems logical enough. I'm sure there are quite a few medical reasons why we shouldn't do it like this, but I don't feel like we have a few weeks to sit around, enjoy a bottle of Corona, rub our toes through the sand and mull over all the options in a leisurely fashion. I want to kick-start this thing ASAP and although a lot of this is out of my hands and I've been told by several people that this is just how it goes when it comes to dealing with anything in the medical community, I just want to make it happen as soon as we can. This sounds like a solution that, if truly viable, can get things going rather quickly.

So, it's a big day tomorrow, with two appointments and also gathering the necessary information for the Friday meeting at Stanford. This brings me to my final part of the update -- the insurance aspect.

I have Blue Cross HMO, and although I'm not well-versed in how the referral and billing and payment process works, so far everything that I've had done has been in-network and therefore will be paid for. The Stanford consult could be an entirely different story -- and if Stanford looks like they are the best option for the full course of treatment, well, that raises a whole other set of questions of what insurance will cover and what it won't.

So, I throw out the call to anyone and everyone -- if there's anyone out there who has a pretty good idea of what I can expect in terms of getting insurance to cover any of the Stanford aspect, or if there are any health insurance experts out there that have advice on how to handle this, please drop me a line. I won't spend a lot of time on this blog lamenting our screwed-up health care system or the fact that people facing life-threatening illnesses have to even spend time worrying about how to pay for treatment (and I'm one of the lucky ones that has coverage in the first place); I'll just ask and see if anyone has any expertise, advice or suggestions on how to navigate an extremely complicated system should we ultimately choose to have Stanford handle the bulk of treatment.

That's about it from me for today. As always, thank you from the bottom of my heart for all the love, support and positive prayer and energy. We're gonna beat this thing. Sometimes the steps seem like they're coming slowly or not at all, but they're there; it's all a process and it all has to play out in its own time. Thanks to some outside help, my process has been sped up a bit today, and I'm very thankful for that. With luck, before long I can get to the business of the real hard work, which I'm anxious to begin.

Oh, one last thing -- please save some positive thoughts and prayers for Tommy and Loretta's boy T.L., who goes in for a very serious medical procedure tomorrow. While I'm in no hurry to speed ahead to my twilight years, I am in fact looking forward to watching T.L. throw his slow-moving left-handed junk at major league hitters in a 20-year career that makes him enough money to bring his parents (and some of his parents' select friends) on a few Caribbean cruises.

With much love,
Dino

7 comments:

Looney said...

Hey dude, much love and much luck with the ultrasound. Theresa and I and the family will see ya soon.

Lisa said...

Sending you lots of love!
Diva

Kim said...

If you want to talk to someone about working the insurance system (including consults at Stanford--my mom has done both genetic testing and seen a renowned oncologist there), I'm sure my dad would be happy to talk to you. He's been doing it for 23 years too many, but he's gotten really good at it. I'm happy to ask him questions for you if you're more comfortable with that.

XOX

Mathew said...

You know what might be kinda cool? If you got them to print out the ultra sound, and put it on a t-shirt. So you could wear around your exact inner structure, done in a t-shirt.

Maybe not green though.

Ross said...

Does the ultrasound machine go to 11?

Mary said...

The Sarcoma Alliance will help with up to $1,000 of expenses related to getting a second opinion. That should be a start! More info here.

It is great that you are going to see a sarcoma specialist - that is a major step in your fight to stay positive and beat this thing! I had sarcoma too, and I know that feeling of just wanting to get the tumor out. It is frustrating when that is not the recommended course of action - or when you get shuffled around and all you want to do is get it out already! I hope that things work as quickly as possible so that you can get on with it. :-)

Dino said...

mary -- thank you SO MUCH for your help. i don't know you (yet) but i'm already glad to know you! (and for everyone else that i already do know, i'm glad to know y'all too, believe me!)