Tuesday, June 3, 2008

A Hard Day's Night

Hi fellow readers -- I'm gonna let you know up front that this one's not gonna be all roses and chocolates.

First things first: we're making progress on the insurance angle and the nurse advocate for us has given us a couple options to work with here. Apparently the main sticking point (and this sure would have been nice to know oh, say, a week ago or something) is that Alta Bates simply cannot refer people to Stanford. It's not in their network; they have no connection. There are no ties there. They simply would never have referred me there for any sort of second opinion. The nurse advocate, a very nice woman named Barbara, is working hard to find compromise solutions here and we expect more phone calls, referrals and movement to happen this morning, once she gets in the office around 9.

(I cannot believe how long this is taking me to type, but I'm coming off 3 MG of Xanax. More on that in a moment. I'm hitting backspace and correcting my spelling literally once every 2-3 seconds.)

She's basically suggested two options: one, let the Alta Bates docs make a self-assessment on whether they can handle my case and if they can't, they'll refer me to UCSF, which is a very fine cancer facility in its own right. I'm okay with that, so long as the UCSF referral, consultation and treatment don't take too long.

Two, we try mid-stream here to change my medical group from Alta Bates to one that DOES have ties with Stanford. Barbara will be calling this morning to discuss the viability of this. If it can happen, then I'll get a new GP with the new group who will refer me directly to Stanford, and we eliminate most of the rest of the hoops and get this thing going.

So, we'll find out this morning which direction we'll go.

In the meantime, my pain is growing. This morning I'm feeling okay at best, but that probably is more attributable to the huge dose of Xanax I took last night just to get to sleep. There are very few positions left on the couch that are comfortable for me. I fell asleep sitting up and eventually migrated to my side, but sleep was more drug-induced, and there is currently a shooting pain in my side if I breathe too deeply (as in, more than halfway in). My waist and back also hurt intermittently.

So like I said, it's not all roses and chocolates. I don't feel like my body in its entirety is breaking down or anything -- the functions all still feel pretty good -- but the tumor has either grown or shifted (or maybe both) and is definitely impacting my right lung now too. That doesn't mean that it's in the lung, but more likely has grown/shifted to the point where it's pressing up against it and causing breathing pain.

The vicodin really isn't working, Advil isn't working, Tylenol isn't working -- this is all internal pain coming from a moving of organs and the presence of a massive tumor that shouldn't be there. Not sure which pain medication actually WOULD have an effect here, but if you know of one, please suggest it.

Dad is on the phone with various people and is also discussing checking me into a hospital to manage the pain while we await the various insurance milestones. I don't know if that's going to happen or not; we'll see how things feel as the day progresses. If the pain subsides a bit, I can manage it from here at home until we're ready to test and go into surgery (assuming that happens within the span of a few days, and not weeks); if it continues along the lines of last night, then maybe I will have to go to the hospital or at the very least receive some stronger medication that will manage the pain and help me sleep.

This is not the most positive of blog postings but please realize that despite the recent travails -- which have been the worst so far but could still get a lot worse over the course of treatment -- my mindset has not wavered at all. I'm still 100% positive I'm going beat this thing and I know all of you are as well. It's harder to have faith when it's 2 AM and you're in considerable pain, but I know things could (and probably will) even get worse from here before they get better. It's all part of the journey and whatever I have to do to get better, I will. I implore all of you to continue to have faith in that.

And if last night was just a bad bump in the road, maybe I'll be sticking around the homestead longer than expected; we'll make any sort of short-term hospital or pain medication decisions later today after assessing how I'm feeling. Since this all started, the pain has been inconsistent and intermittent and maybe today will be much better than yesterday.

One last note: my dad now has my blog password and if the gears jump into sudden action such that testing and treatment begin immediately, or I end up in a hospital bed for a couple days to await treatment, he'll keep you posted. So, don't expect the news to dry up if I exit the communication loop for a few days, but I also encourage to continue the phone trees and email lists to get out the latest and necessary information so that all my extended family (which is what all of you are) can know the latest.

Let's see how today goes, what sort of news we get, and how my body feels, and if I'm up for it, I'll post again tonight with more. Again, my love and thanks to all of you for your various parts to play in this journey, and together we'll reach the end of this road and it will be a great thing. The road is going to have some potholes (like last night), but the ultimate destination is going to be worth it.

With much love,


Chris said...

Sorry to read of your pains with insurance and gut. Can't say I'm too surprised with the insurance bit, but hopefully they will help you get it all sorted quickly so you can get on to the important part in your quest for wellness. Hang in there! Maybe see if you can get some Oxycontin?

Amy said...

Oh doll, I'm so sorry to read this. One of the WORST things about having the big C is dealing freaking red tape, rules of insurance, what they can and can't do (read: won't do) and now, the pyhsical pain you are experiencing as a result of heels dragging. I found Oxycodone to be a dream, even if that meant I was hallucinating, but I was terrified of becoming Lindsay Lohan or Chandler Bing and addicted to it. Didn't want to layer-in a trip to rehab assuming I would end up in remission. Even though rehab is the new black in Hollywood these days. The other medication you can get in the hospital in your IV is a type of morphine I think, called dilatad (sp?) and of course that provides immediate relief as it goes right in your blood stream. Warning on the pain killer side effects though - please refer to the email I sent you privately! ;)
Tough as it is to comprehend when standing in your shoes, but unfortunately, these people do their jobs from 8-5, or something like that. It is more uncommon that not in your place to find someone that genuinely will go to bat for you if you don't make them. The last thing you want to waste energy on is red-tape, but my dear friend, it is part of the battle. I started chemo just about a month after diagnosis and this was considered "fast-tracked" - can you imagine? You're not alone in this, D. I just wish there was something we could all do in this phase to jump-start and get you rolling on the highway.
For what its worth, this post was especially meaningful to me. Be whoever you want to be on this blog. Never feel like you have to be fake-chipper to make us all smile. If something sucks - you have every right to bitch about it. We're here for the ups and downs and support you wholeheartedly every step of the way.
Love from rainy Portland, amy b.

Lisa said...

My favorite Bassist:

I hate to hear about your pain!

Ok...here is my long post from the nursing perspective.

First things first, your pain must be managed while all this insurance crap is being worked out. Its NOT ok to just have to deal with it!

Dilaudid - like Amy mentioned. This can be in pill form or IV. If you take pill form its a smaller, more prolonged effect (not as effective). If you take IV form (read: you're admitted to the hospital), it works fabulous for people! You feel improvement within 5-15 minutes. You can even be hooked up to your own pca (patient controlled analgesia) machine, where you can push the button every so many minutes as desired, and a controlled and safe amount of drug is delivered. This helps keep a nice steady state of pain relief.

Oxycodone is available in pills, and yes, I can totally understand concerns about addiction.

But, there is a big difference between drug "addiction" and drug "dependence". There is no doubt that certain pain killers cause "dependence", and so people need to wean off of them, and can experience some symptoms of withdrawal while doing so.

Drug dependence is a temporary thing that should not be confused with drug addiction.

Drug addiction is a different thing all together, and much less common. It implies a person would behave in crazy ways to obtain that drug, and brings up images of people spinning out of control.
That won't happen to you. You have your head on straight.

The new paradigm in pain control is - CONTROL THE PAIN! UCSF taught me about the shift in healthcare from worrying about giving too much pain meds, to instead, focusing on giving the right meds to manage pain. In other words, to use them appropriately as an important tool in pain management.

So, my final word is, this is a time for pain management, and please know that you are absolutely justified to demand appropriate pain management. And clearly, Vicodin just isn't cutting it!

And like Amy mentioned, there are those side effects...I sent you that private email a week or so ago, I presume things continue to move along well?


Kim said...

TO: Cancer

FROM: Dino’s family and friends including but not limited to the members of "I HEART Dino Scoppettone" and the loyal readers of Dino’s Journey

You are hereby notified that your presence on or in Dino Scoppettone is not desired and will not be tolerated and that you are to refrain from entering therein or thereon for any reason whatsoever.

You are further notified that upon violation of this notice, you may be subject to immediate arrest or a trespass warrant will be sworn for your arrest and prosecution.

Signed on the 3rd day of June 2008



Kim said...

p.s. Amy mentioned dilaudid. My mom's docs have her take dilaudid to manage chronic pain and supplement it with Oxycodone to manage "breakthrough" pain.

If it's bad, you may want to ask if there's a better combination of pain killers that will do the trick. Sometimes it takes some experimenting.

Nathan said...

Dino...I wish we could collectively take some of the pain off of you and spread it around. I wouldn't mind some discomfort if I knew it would help.

Definitely take something stronger if it makes you feel better.

Francesca Giessmann said...

Hi Dino:
so sorry to hear that u r in pain!
yes the Diulaitat) sp?) is super strong... I had it .. and although it did the trick, .. it made me totally "drunk" .. and NOT fun drunk...

If I may add my 0.2 ct about hospitals... I do not know anything about the ones u are mentioning.. i used to leave on the east coast ..

BUT , we I was first DX, I was at this NJ hospital , that although had great "reviews"... I was set on going to MSK in the city ( NYC).. for a variety of reasosns,. .some within and some not in my control.. i decided to stay in NJ.. and oh boy, that was the right thing.. you see.. during my 6 montsh of treatment..I think I was never more than 4 -5 days without having to go in..either for chemo, for shots..for when I had to be in the H for weeks cause I was so sick.. so what I wasn't to say is that being "close to home".. or at least conveniently located is HUGE..

There were days when I was so sick and they and to rush me in .. and it took 8 mins from my house to H.. that I used to be so thankful that I didn't have to deal with traffic to get into the city

so bottom line, OF COURSE go for the best care that u can possibly have but keep in mind that convenience and location are also important.. the road is long... (metaphoric speaking)

i hope all this will be resolved soon, that u will be pain free and can start Kicking cancer ass soon!

swiss MIss...