not all who wander are lost.

Friday, August 27, 2010

CPT-11






Fuck. Fuck. Fuck.

Lots of stuff going on over here and trying to wrap my head around it. No easy task. When I'm not in a form of denial, I'm in a constant state of wondering...Why?

Well, because, that's life.

I was going through a rough time a few years ago and my dad said this to me:

"Cailin, LIFE is like a RIVER. It is going to bend left and turn right, it's going to rage with water...and at times its going to all about run dry. You have no control. You are just along for the ride. All you can control is how you handle yourself. And it's times like these that determine the kind of person that you are."

So there you have it. A little bit of wisdom from Paul Callahan. He's full of it. And it's true - I shouldn't ask WHY ME, WHY US, WHY HIM...this is what life is handing us. So we can sit and cry and feel sorry for ourselves - which would accomplish nothing - or we can live in love and positivity and soak up every single moment.

Not so sure how to go about updating you all, and my mom writes the best emails, so here is the latest:

So a new chapter begins at Camp Callahan...
We are going to call this new adventure CPT-11.
First, a shout out to Deb Gibson who dropped off sausage/cheddar/potato quiche for us the other day . She made Paul's without the meat. We all had one for breakfast. That's how we started to our day. And thank God we did, because as it turned out the next meal wasn't going to be until dinner.
As you all know, Paul got his last MRI on 8/19. He and I picked up the MRI and the report the other day. We weren't thrilled with the report , but we decided right then and there, that nothing was going to change. We would just keep on, keeping on, and sticking to our plan of love and life.
Today Cailin , Paul and I went to Voorhees to meet with Dr. Lerman. Cailin had some errands to run, so we told her to meet us when she was done. Well, as we expected, the news was not what we had hoped for. The tumor has grown a bit, so we have changed our approach to keeping it manageable. Paul will no longer be taking his oral Temador Chemo. He has been changed to a liquid infusion chemotherapy drug named Irinotecan (eye-rye-no-tee-can) also known as Campdazor, or most commonly called CPT-11. That's what the chemo nurses call it, and that is how I will refer to it from now on. He will get this as an infusion every two weeks. It will be at the same time he is getting the Avastin. Instead of us being in and out of there in an hour, we will now be there for about 3 1/2 to 4 hours. I will be looking up this medication later tonight. They did give us a hand out on it. Its most common side effect is diarrhea, and they sent us home with an Imodium-AD schedule (which is a lot more aggressive than what the box says.) That will actually start tomorrow and hopefully we'll get a handle on it , and then it hits again after about 10 days for some reason. Paul hates when I talk about him pooping, but hey, inquiring minds want to know!!!!
We were also sent home with two Scripts. One for Decadron ( the steroid he used to take). We won't be taking that yet, but we want to have it here in case we decide it's time to start. It will help with inflammation. Thus relieving headaches if they were to get intolerable, plus any numbness etc that might be caused by inflammation.A funny thing happened today, When they gave Paul his infusion they added an anti nausea medicine, and a steroid in with the whole mix. After he was finished, his arm and neck which had been sore (not tumor related--just hurting from him over doing things) felt 100 percent better . Steroids do fix everything it seems.
They also sent us with a script for Keppra. It is an anti seizure medication. Paul has never had a seizure, but they give it as a precaution. On the chance that he might have a seizure and fall and hurt himself , since with the Avastin a simple bruise or cut could not heal. We are holding onto that for a bit too.
The third script was for Tarceva. We aren't sure if the insurance will ok it for him , and the Doc isn't ready to start that yet anyway. He'll wait to see after the next MRI if we need it or not. This way, if we are going to use it eventually, we'll know that we might have to do battle with insurance way ahead of time. Its always good to have a head start on the pharmacy and insurance companies.I haven't looked anything up on that yet, but rest assured I will be camping out here on the computer for a few evenings.
Once again, he felt no ill effects while getting his infusion and we went to The Bonefish Grill afterwards and had a great meal. We were laughing so hard when we came out of the restaurant that I almost wet myself. Trust me , if love and laughter were all you needed, he would be healed.
Sorry this isn't the email you were hoping for. Trust me, its not the one i was hoping to write, but its the hand we've been dealt ,and its the hand we will play with Love, Laughter, and full of all the life we can muster.
On a side note, sorry if this offends any vegans or non-hunters , but "If its brown its down, if it flies it dies, and if its a 27 1/2 inch Striper it might be rolled out with a rolling pin. " KILL 'EM and EAT 'EM has always been our motto.Feel free to come by and dine with us. There will always be something FRESH on the table. Hunting and fishing is Paul's life, and that's not about to stop now. It makes him happy and that is the goal. Keeping Paul happy and well fed with Great healthy food is what its all about. The doc is amazed by how great Paul is doing despite his tumor. I'm not surprised! That's what good living, good loving, good cooking,positive attitude, and having 123 people on your update list and countless others praying and sending you love every day will do for you. We need you now more than ever, so keep on the team with us.Its so good to know that we are not alone. love to all, Doreen, Paul and Cailin

So here we are, living in love.
Dad's 54th birthday...August 11th. Dinner @ Bracas.



1 comment:

  1. JUST TO LET YOU KNOW LOS VAGOS ALWAYS PRAYING AND WISHING THE BEST FOR YOU AND YOUR FAMILY
    BE WELL

    ReplyDelete