Monday, June 2, 2008

Monday, Monday

The weekend has come and gone without any news on the medical or insurance front, which is to be expected. I don't work Saturdays, many of you don't work Saturdays, and most doctors don't work Saturdays -- nor do Alta Bates administrators who need to make final decisions about how to handle the treatment of their patients who have life-threatening illnesses.

Everybody's got to have a couple days at the end of the week to relax, maybe play some golf, or watch an inordinate amount of crap reality programming on TV, like Celebrity Circus Axe Men In Alaska Who Are Really Tough While Simultaneously Dancing And Forgetting The Lyrics To Songs About Dangerous Fishing Situations. Fine.

Friday, we had a nice visit with Kevin, the assistant to my GP, Dr. Stewart. Kevin has been handling all the paperwork on my case and routing it to the right people within the Alta Bates network, and he's spent untold hours dealing with the bureaucracy of my situation. He's very warm, patient and understanding, and has been a real trooper in all this -- I'm not quite sure how to express the extent of my gratitude but when this is all over, we'll figure something out.

Later on Friday afternoon, we found out that all the paperwork had finally made its way to the managing director of the Alta Bates Medical Group so that he or she could give a final answer regarding who is going to take on (and pay for) my treatment. I got a call from Barbara, the nurse advocate who is on my side in this battle, and she took me through the possibile outcomes.
First, she explained that I have a couple of strikes against me in our request for Stanford treatment:
  • To begin with, Alta Bates is not connected to Stanford in any way, and had I asked for a second opinion within the network as per their proper protocol, they would have sent me to one of two other places; one was UCSF (a very fine cancer center in its own right), and I don't remember the other. So, in their eyes, Stanford should not even really be part of the equation in the first place.
  • Perhaps more damaging, though, was that I circumvented their "second opinion process" by getting my own second opinion at Stanford, as arranged privately by Lou. This is a big no-no in the eyes of the medical group and if we know anything about medical insurance, it's that they will fight everything to the hilt if it means paying extra money. The fact that I didn't follow their rules is a big hindrance to my request.

If there's a "plus" side to my request, it's that I likely have a lipo-sarcoma of the stomach. I'll spare you the math, but the rarity of this disease means that the Alta Bates physicians see these exact types of cases a few times a year at most. That's being generous, I think. Stanford sees these types of cases all the time; there's probably very little about my own particular tumor that will be new to them.

I don't know if that's going to make a difference to the administrator (who is a practicing, expert oncologist) as he or she makes the decision on how to handle the treatment. There are pretty much three ways this could go:

  • I could get a full thumbs-up for all treatment and testing at Stanford. I'm not expecting this to be the outcome.
  • I could get a compromise, in which they agree to pay for consultation and surgery at Stanford, while all testing and radiation treatment would happen in-house at Alta Bates. Assuming Dr. Jacobs from Stanford is quarterbacking the team and Dr. Norton from Stanford is the surgeon, I'm totally fine with this. It's really immaterial where I get my hi-def CT scans -- I just need to get them NOW, not in another week or two. I also think there's a decent possibility that this may be the administrator's actual decision.
  • I could get a thumbs-down on everything, wherein they tell me that they can handle every single aspect of the treatment, from testing to surgery to radiation.

If that last option is the Alta Bates decision, then we have a whole new set of hurdles to jump through while we escalate the case to the Blue Cross HMO level, but at the very least, I will begin testing as soon as humanly possible this week so that we can prep for the next (first!) stage of my treatment. No more dawdling, no more waiting for administrators, no more twiddling my thumbs while the bean-counters request documentation. It's all been delivered and collated, so it's time for them to act.

Last week was a week of relative inactivity; seeing friends, relaxing on the couch, reading, so on and so forth. And waiting, lots of waiting. Okay, fine, been there done that -- now we have to act. Kuato is not getting any smaller and in fact shifted at some point yesterday to reside right down just above my waist, and it's causing me more pain than it has before. I'm not immobile by any stretch, but the couch is the most comfortable place to be and that's only going to become more and more true until we get this ugly thing removed. At night, I've taken to falling asleep on the couch in an upright position, and then when I inevitably wake up at 2 or 3 or 4 AM, I drag my half-asleep body upstairs to my bed and spend the last few hours of the morning catching sleep in small bunches while laying on my side.

I'm gonna run off and get lunch now; we've made a couple phone calls this morning trying to track down the key players and no one's yet gotten back to us, so... the waiting continues, but I'm trying hard to not let it get me down.

I just got a voicemail from Kim indicating that some of you regular readers are concerned that my lack of posting over the weekend has indicated a turn for the worst, either in my mental or physical health. As always, I dearly appreciate the concern and the answer is no on both counts -- basically, I just didn't have the creative energy or inspiration to fire up the blog and throw up some thoughts. That will happen from time to time, so please don't read anything into the occasional lapses of inactivity. It might be a different story once treatment starts, but until then, I'll be here fairly regularly, keeping you up-to-date on the latest steps on my journey.

Finally, a few of you were a bit confused about Thursday's post -- if there are still any lingering questions about what I was talking about, please refer them to a Ms. Rosie Palm, care of The Sperm Bank of California, and she can clear things up for you.

Hoping to get some sort of answers today and if we get them, I'll let you know!

With much love,
Dino

9 comments:

smrose said...
This comment has been removed by the author.
Seth said...

Yo Dino!
I'm traveling right now but met a woman on my flight to O'Hare that works for ACCURAY and their slick new cancer radiation device called the CYBERKNIFE. Radiation therapy device on a robotic arm that tracks the tumor as you breathe/move/etc during treatment. Developed at Stanford. Still considered "experimental" by insurance which is their way of saying "We don't want to pay for it." According the woman I met, it is best for brain and other organ cancers, but may be useful in your case.

Ask your doctor if CYBERKNIFE is right for you.
http://www.google.com/search?sourceid=navclient&aq=t&ie=UTF-8&rlz=1T4WDIA_en___US209&q=cyberknife+radiation


Seth

Mathew said...

How is you putting off writing something important to procrastinate and do nothing much of real value (especially during baseball season) anything other than par for the course for the dino we all know and love? I took it as a sign that you are actually doing fairly okay and stuff is as reasonably fine as could be expected.

Amy said...

Dino, Butch Taylor left DMB so hurry up, get well, and learn how to play the piano and then you can join them on tour. I don't think Fonzie is going anywhere soon so bass isn't available, but perhaps you can tickle the ivories with them. Seriously, what do we know about Butch leaving? So sudden?
I think your #2 option is a good one. As long as Stanford is collaborating w/Alta Bates that should be good. Where the actual chemo is administered isn't so much a factor as who is laying out the plans. You nailed it - quarterbacking the game. I was actually treated at PAMF (Palo Alto Medical Foundation) but Stanford was in on everything and consulted with my onc. @ PAMF. The Stanford Dr. Advani even said to me, "There are many paths that lead to Rome, and you're already on a really good one..." which made me feel tons better. I wanted their blessing, and once I had it, felt much better.
I hope that helps ease your mind. Alta Bates is closer to your home too, so it would save you the commute to Stanford - which becomes annoying when you're going several times a week. :)
Just my $.02. You're doing great, amigo. Hugs, Amy

Billy Ramirez said...

The advantage to laying on the couch is that you can pour the potato chips directly on to your stomach while you watch Cheerleading Championships on ESPN Classic.

Oh, and Brad was confused as hell about Thursday's post.

Bonnie said...

ABMG approved my second opinion at Stanford, so Stanford's not out of the question. Fingers crossed they do the right thing.

Ross said...

Dino, you might have to alert your readers about when the "other" part of your personality that many of us already know and love raises its head in your writings.

Perhaps you can post an "El Bittre" primer...

Kim said...

Dino
Thanks for the update! I will pass it on to inquiring minds.

Love ya
Kim

LynnAJ said...

phew!
i was wondering what was up down there!
(no pressure, though)
thinking of you every day and sending healing energy your way, Dino! sooo proud of you.
call anytime to escape to boring kenwood....
Love, Lynn and Corey