Monday, August 4, 2008

Baubles, Bangles and Bumps

As most of you know, Dino has a new bauble, his SynchroMed II pain pump. Over the last four days, his doctor has readjusted it, slowly zeroing in on what will be the best pain management. Dr. Behravan's goal is to get him to a "3 or under" on the 1-to-10 pain level chart. I think Dino is probably very close to that now, but it's still a bit of a balancing act.

It feels to me like the pump may possibly need to be adjusted downward, primarily because Dino's spent the last day hallucinating quite a bit. Last night was one of those "no sleep" nights for both Dean and I because he spent the entire night talking to countless unknown characters, sometimes very loudly, sometimes singing, mostly unintelligible (except for when he told someone, a waitress I suppose, that "I'll have the scrambled eggs with bacon, but I'm not going to pay $1,100.00 for it!")

One of the bangles that accompanied the pain pump is a hand-held unit whereby Dino can give himself a "bolus" (an extra dose) every four hours if he needs it. He simply holds this device over the pump and presses several icons on a small computer screen to activate the bump-up. However, Dr. Behravan advised us today to hold off on the bolus for awhile because Dino appears to be addicted to the high levels of Dilaudid (I know, we don't like it either, but it goes with the territory) and thus it's time to begin a partial withdrawal down to a point that still regulates his pain but doesn't prompt hallucinations. So, the baubles and the bangles do serve their purpose, but nothing is perfect and we still have to get this one under control.

Regarding the bumps, we found ourselves saying shortly after his surgery (almost eight weeks ago) that things were probably going to get worse before they get better. I've kind of given up on that phrase and shifted into a different gear by saying that things aren't necessarily getting worse anymore - rather there's a continuing series of bumps that will be occuring for awhile. After all, we haven't started chemo yet (maybe by the end of this week), but we know that will be a bumpy road. And who knows what else is on the horizon.

I do know one thing, and maybe you can weigh in on this - we've got to get Dino mentally (and physically) back into the driver's seat. He's become accustomed to being waited on hand and foot (out of real necessity, of course), but he needs to take back some control for himself now. As an example, I ask him everyday if he wants to do a blog, but he passes on it. Same with having visitors, he doesn't want any. I know his world has gotten extremely focussed of late, but I think it's time to start the re-expansion process - time to get his juices flowing again. Let me know what you think.

Stay tuned for the chemo schedule. As soon as I hear, you'll hear. Love ya.

Dick Scoppettone
Dino's dad


liz said...

Hi Dick,
I've been reading the blog often. Thank you for writing your entries. This may be a silly question, but does Dino have the opportunity to listen to music that he likes in the hospital? Good music could get the juices flowing. I know how he felt about his options on the tube and I'm hoping he's been allowed "visits" from Dave Matthews, U2, Rush, etc.
love to Dino, liz

Brad said...

I'm with you, Dick. Time to get back on the stage and sing to the masses. Heck, even dictation would be quite acceptable at this point. No thousand-word essay, just a few words a day to let us know how he is feeling, thinking. There must be some wacky, messed-up thoughts going on up there and, even if not always encouraging, they would certainly let us know he is alive and kicking. He started this blog for a let us share in the process. He even warned us it wouldn't be sugar-coated. Well, now we're all addicted and we need our fix of life-affirming bravery. Maybe even a bolus.

OK, maybe we start a Q&A to get things rolling. Dino, what was one thing you told yourself today that helped you get through an uncomfortable time?

Dino mumbles, Dick types, done!


Jason & Catherine said...

HI Dick,
I can understand your concerns. I imagine that the main focus for everyone has been, rightly so, on managing the pain and monitoring the physical aspects of Dino's condition. The burden of so much pain over and above having to fight the illness must be very hard to cope with. Your last blog entry made me do a little research on the psychological effects of major cancer surgery and opiate related pain control. It shouldn't be underestimated! Dino has shown the most amazing determination to fight and he has been an inspiration, as have you Dick. And it seems that you have an extensive support network, which is hugely important in the circumstances. Maybe it's worth also talking to a support group or an NGO like the American Cancer Society about coping with the pyschological effects of managing pain and having major surgery. They may provide you with some clues on hope to help with the "re-expansion" process. We love you. Catherine & Jason xxx

Ross said...

I cast another vote towards encouraging D to write, or at least dictate. Heck, even podcast. :)

I find myself checking the site a couple of times a day, hoping for an update. I want to know how my friend is doing, and ideally I want to have him tell me. It is selfish, I know.

(That is not meant as a knock on you Dick. You've got some writing chops as well).

It is a helpless feeling to sit here 400 miles away and be able to do nothing. My minds' eye pictures a reality that is not realistic, one of Dino owning the hospital room, if not the floor of the hospital, the self-deprecating, smart-ass life of the party zinging one-liners and movie quotes.

So, Dino, if you are reading this (or having this read to you), I need a column from you, man. Gotta hear your voice. Need something soon. Can you help me out? Toad?

Dick, if there is anything we can do, aside from the positive vibes and prayers flowing your way, let us know. Is there an address where we can send stuff via snail-mail?

"Failure is not an option."

wtofd said...

Dick/Dino, send me an email when you have a minute at wtofd"at" I have myxoid liposarcoma and a history of chemo, radiation and a few surgeries. Also, an initial large tumor: 10%+ of my total body weight. Cheers, Trent

houston said...

Hi Dick, and the whole family! I hope the 'thank you's' we preface most of our responses back to you with do not sound empty of the heartfelt meaning behind each one. Wrap your arms around yourself and squeeze extra hard, then pat yourself on the back...there, that is from all of us reading your updates...I think all of us in Dino's corner find the notes a way to focus our energy, thoughts and prayers in more specific ways toward him; not unlike the prayer chain during his surgery hours. I think your insights concerning Dino's passenger seat status are thoughtful and accurate...the ride on the cancer train is as much of a rollercoaster for the support team as for the patient, just in different ways, and trusting your gut about his emotional and psychological needs will usually be right on, even when your stomach may be reeling. The music sounds like a good idea, and can you get that boy outside at all, even if it's just for a few minutes of noon sunshine? Dino, I feel as though I've been listening to the boxing match that is your life right now, and even though this last round against pain came in looking for a KO, the round goes to you...and so will the next one, and the one after that. Head to your stool, catch your breathe, and then take a look around. There's not an empty seat in the house, and none of them are filled with mere ticket holders....the whole damn place has become your corner, ringside as far as you can imagine it to be. You told us it was going to get ugly, and you said you were the SOB that was going to kick some ass...and we totally know you will. We miss hearing from you Champ, even if it's only a "I'm still here".

Barry said...

The only Bangle that should be accompanying Dino is Susanna Hoffs! I am glad I got to see you Dino, even for a few minutes. You were way more lucent and aware then I thought you would be. It is time to start letting us all back in. We are ALL here to help you get through this. Not just by words, but by feeding off our energy to help strengthen your resolve. We got you man!

Anonymous said...

Yo Dino,

I would love to hear more about what you are going through and some tidbits of your day. For example, I wouldn't pay 1.1Gs for breakfast either, no matter how good.

Look if Rich Harden can get past the mythical 100IP barrier and have a 1.11 ERA in the NL least you can do is blog about it and how he will inevitable implode and Pineilla will let him pitch 2.67 IP and give up 23 hits and 16 runs.

We're all counting on you, Stryker.

Miss you man,


sierra said...

Thank you for keeping all of us updated on Dino's progress. I too hop on the blog 4x a day to see if there are any updates.

Dino- I loved reading your blog about your date and of the nurse who had to do a physical exam on your "boys". It made me laugh.

We all would love to read more from YOU Dino. Sooo get back on the blog and let us know was-up!!!

Love you!

Peloton said...

Dino I agree with your dad. I think what he is saying is that you can't get too wrapped up in the cocoon or you will be stuck there. You are understandably in stasis, but this f@#$ing thing you've got is not. It is time to get going onto the next part of journey. to put it in Tour de France terms, (I can just hear you now "peloton!") you have survived the alps but but the Pyrannees are ahead. Time to get to work boss. You have done an incredible amount already, but there is more to be done. And you are ready. Time to think about the next part of this journey and start taking small daily steps toward realizing that goal. As much as we would all love to hear from you, don't waste energy writing unless it is what gets you going. Whatever those next steps look like, it's time to do it. Getting up, taking a walk, listening to music, writing whatever. Time to get back in the game. I love you Dino. sean

karin said...

Dear Dino:
We mere mortals need you. We love you and pray for you every day. Please write soon.

Jenee said...

OK ok -- i know I've been MIA for a while big D, but every time I check in on the blog, I "expect" to hear you talking. (Although I am growing quite fond of your dad's writing-- he's totally sneaking in while you're not looking... stealing your mojo Bigg Dogg. Take it back!). Seriously, get your arse back on this blog or else I am going to start throwing my weight around. Yeah, what's up now?! (Don't laugh. Why are you laughing right now? I may be small but I can still take you. Try me.)