The one thing you can be sure about in this life is that something is going to change.
Don’t be scared of change - grab hold of it with both hands, like you’re about to plunge down a steep hill on a roller coaster. Enjoy the thrill because you’re tasting life first hand!
January 29th was a Tuesday, and we landed at LAX at 11:30am. We had just enough time to rent a car and head over to my 1:00 pm CT Scam at the lab, wait for the results and then meet with my doctor at 4:00. We try to plan these trips so they just kind of fall in to place.
Then I noticed I had several messages on my phone….
I hoped it was a work thing….
Please don’t let it be a doctor thing….
I listen to my message,
Not just my doctor, but all the doctors wouldn’t be in the office for the rest of the week. They were attending some meeting someplace that suddenly came up.
If I still wanted to meet, it would be with the nurse practitioner. And I needed to get to the clinic by 1:00pm. My CT Scan would be reschedule, and they’ll with the results.
Guess the day is not going to go as planned.
Nothing like packing up your life, flying across the country, renting a car - all to find out your doctors not in.
The coordinator for my clinical was also out of the office.
I was there so I was going. Met the nurse practitioner – she was new to me, but nice. Turns out she was also the coordinator for the new clinical trial Dr. Ribas wants to transition me to.
How exciting to meet a bunch of new people…..
But something interesting happened. When I introduced myself to the new coordinator she looked at me and said, “I know you! You’re famous! I’ve read all your reports and articles. Wow, you’re the “lucky one”!”
Damn straight I am!
Just call me “Lady Luck”!
I feel like a diva.
Anyway, she checking me over and told me I looked good.
Damn straight I look good!
Well, except for my hair.
I hate my hair.
This crazy drug’s got my hair sticking up – I look like the Medusa.
Anyway, she said I looked good.
Except for the blood pressure.
Apparently, its a drug side effect. Magnified by all the gyrations to get to the doctor’s office.
Then this new coordinator looked at me and said “your trial is over. You’ve got to start thinking about the next step.”
"THE ROLLOVER" was another word for CHANGE.
This is the deal. An experimental drug is tested on a number of people so that the doctors can figure out if the drug works. But that’s just a part of it – they also test the drug in a number of different environments, too. Like with different drugs to test how the drug interacts with them, or as a “first treatment”, or a “subsequent treatment”, or in combination with something weird.
Anyway, there are a bunch of different trials for my drug. People in those trials fall out of the trials – some because the drug isn’t working for them, some because of the side effects, and some, well….you know.
Anyway, after a while these trials are down to just a couple of people, or no people, and the record keeping, accounting and reporting requirements are economically screwed up, so they “roll up” all of the patients and put them into a “Rollover Trial”.
That’s where I’m at now.
It makes sense, and I’m all for helping out the pharma company.
The catch is I have to start going back to UCLA every month again. I thought I may have the chance of getting into another study that was closer to home.
So I thought - WRONG.
We noticed that none of the hospitals we where familiar with are on the list of rollover study centers. The closest study center is going to be in Morgantown, WVA.
This surely can’t be correct….
No Memorial Sloan Kettering…No University of Pennsylvania…No Vanderbilt…..
We went over to the hospital got my CT and left the hospital with a kind of Scarlett O'Hara approach, we will think about it tomorrow. We left the hospital around 4:00 pm and drove to San Diego where I had a trade show to attend for work.
San Diego was a success, and then on Thursday we left for Reno, NV where I had another event that started on Super Bowl Sunday.
I did not want to fly home or spend a long time in Reno alone – the place gives me the willies! I keep thinking about that Johnny Cash song….
“I shot a man in Reno…
Just to watch him die..”
Once you spend a few days in that town, you get it.
Of course, I made Mike come with me to Reno and we got to spend a lovely weekend in Lake Tahoe, and that weekend was followed by a very exciting Super Bowl party in Reno where Mike, my friend Kelly (a person I work with) and I were the only Raven fans in a casino party made up of thousands of 49er fans. Everyone was sporting 49er jerseys.
Except us, that is!
Even Mike, a die-hard Redskin fan, was wearing the Ravens purple and black (Mike doesn’t want anyone to know he “cheated” on his ‘Skins, so please keep this part between us).
Ha ha ha ha!
It was cool being there in a crowed of San Fran fans whooping and cheering. Until the last few minutes of the game, that is….
Uh Oh! -- we really could be shot in Reno!
For cheering the wrong team!
We weren't, though.
Instead we made the local Reno news for being the few brave Ravens fans in the crowd.
Anyway – back to the medical stuff.
I got a call Monday from UCLA that the CT looked great. And, BTW, “what do you want to do about the trial”? Stay at UCLA for the rollover, transfer to another hospital, or just get a prescription for the magic pink pills at $250,000 per year”….
Remember how I started this latest installment of How Cheryl Turns?
Change is a coming.
It was time to talk to my insurance company again and see how keen they will be to pay for this magic pink pill.
Something to think about….
Anyway, we finally made it home, safe and sound, to Dulles. As always, I called my mom to come pick us up, she said she would be there in 30 minutes. We grabbed a chair and sat by the exit doors to wait.
I started reading my book, but before I knew it my mom was there. We got home and started to unload the luggage….
My suitcase, Mike’s suitcase, my bag with the medicine…….
I was missing my bag of “tricks”!
THE PILLS were GONE!
Two stink’in months of pills were gone!
OMG – WHAT THE HELL DID I DO WITH THAT BAG!
We immediately went into panic mode.
We got into the car and drove like lunatics back to the airport. I called airport security - it only took me 10 minutes to get a live officer on the phone. I told him what happened and that I was reporting an unattended bag. He assured me they are on it!
Thirty minutes later we are back at the airport. I jumped out of the truck ran over to my chair and there it was!
My little bag of “tricks” was waiting for me.
Wow! I was so happy and concerned all at the same time.
On the way home I called airport security to tell them that I had found my bag – they could call off the search! But the guy that answered asked, “what bag?”. I explained I called and the officer was putting out an alert for the bag. The officer said there wasn’t any alert issued. And heck – “those guys just went off duty”…..
Oh well - never mind. I was happy not have to spend $20k on my missing meds!
Going through hell trying to schedule my next visit, and its all because of NEWMAN!
Newman is what I call my clinical trial coordinator.
I have had a long love / hate relationship Newman - she’s been my nemesis; just like the Newman character was Jerry Seinfeld’s nemesis on Seinfeld.
I have been trying to get NEWMAN on the phone for the past 4 weeks to get the low down on my next step, but no luck! She’s good at receiving the message, but she doesn’t return it. And returning the message is really the most important part of the dialog, isn’t it?
I won’t go in to the details cause they’re boring, but if you’re job was to coordinate cancer patients wouldn’t you get back to them? Especially if it concerns treatment?
NEWMAN is lacking some people skills.
I finally went over Newman and sent an email directly to my Doc. Know what he did? He responded immediately – my next appointment would be March 29th, and we could discuss options.
Mike did his magic to get airfare squared away – Sergei has Spring Break that week so we thought he’d like to come out to LA with us. I decided to confirm everything in an email (remember NEWMAN has been on the entire email chain with not so much as a peep).
Newman informs me that the office is closed that day and that I’ll have to reschedule.
She didn’t just say that, DID SHE?
Mike emailed her back because I was afraid I wouldn’t be so tactful this time. My Doc quickly replied, “Don’t worry - I am working that day. I’ll see you”.
Thank God for Toni Ribas! He’s the ANTI-Newman!
Our relationship with NEWMAN actually goes back years - she was the first person I spoke with at UCLA about my Clinical Trial. We started our relationship by her being angry at us.
Because we had found out about the trial!
She said she’d get back to us but never did. In the mean time, though, I tracked down TR in Berlin and got an appointment.
Anyway, sometimes change is no change…..
Change is a process begins or continues - however you look at it.
Still beating the odds.
We continue to move forward and consider new options to fight Mr. Melanoma.
New Developments for Zelbraf:
Over the past few months, I’ve found out that Zelbraf shows an extended period of affectivity in lab rats when the dosage is frequently changed. It’s thought that the changes in dosage confuse the cancer gene.
Change is kind of my MO.
Turns out that drug holidays and not always remembering whether I took my pills or not has worked for me!
I guess it’s kind of like working out, doing the same thing every day - your body gets used to it and you do not get has fit.
Little did I know that my absent mindedness would be beneficial.