Tuesday, November 6, 2012

This month is pancreatic disease/cancer awareness month! Purple Pride

Feedback from readers who are having surgery soon: They like to see
pictures of me to know that I am ALIVE and LOVING life:-) So here you go, a recent
function with my best girlfriends!

I have held off on this detail of recovery for a while now, always wanting to write about it, because it is the HARDEST part of the whole ordeal, yet not wanting to write about it because it is so misunderstood by our society and I never want readers or friends to misunderstand and judge me.

But here it goes, for me, and for all the others who will identify with this at some point after surgery.

Narcotic Drugs:

This is not an appendix surgery, it is not your gallbladder, your tonsils, your toe, it's HUGE. I swear some people I talk to are that under educated that they actually think they might be the same thing. Clearly some people did not pay attention during science classes! You can't have this surgery without heavy, heavy narcotic use. I do not mean the illegal kind of use, the kind that you buy on the street, I mean the kind that comes in the PCA pump in the hospital and in high dose pills when you return home. The kind that come in the form of a little patch that you stick to your body, the kind that comes in the form of a lollipop that you eat, the kind that takes the horrific pain you are experiencing away and makes you feel like you can make it through one more day. That kind friends.

You are having intense pain everyday when you even decide you need to have a TP-AIT surgery so most people are already on a daily pain killer. That is actually one way the doctors determine your urgency to have this surgery. Once you have the surgery you are not only dealing with missing an organ that has so many nerves associated with it, you are re-routed entirely, even given new blood supplies to organs that stay, and you are cut open all the way down your stomach. OUCH? Yes.

About 2 months after surgery I was on the highest amounts of medicine I had ever been on. I immediately began weaning down once I could. The pain doctor and I worked together to step down off these medicines in a way that would not make my life miserable, yet would not mean I would never be able to stop. I will never forget the resident, who was about my age, at the hospital, who pointed out that she felt I would need pain medicine forever and she felt sorry for me (I think this was 4 days post-op, as you can imagine I was not in a good mood). That didn't sit well with me. She didn't know me, didn't know my drive, or what I was capable of, so I actually asked to have her removed from the pain team, I may have even shouted that she must be removed. And she was:-)

Step by step, at two week intervals, I weaned down. First the patches had to go, and that was a huge success. Every bone in my body ached, every word someone said made me want to throw punches, and every sound gave me a splitting headache. I missed work, laid in bed and cried, and wanted to die. This is the truth. Nothing to do with the pain of the surgery, or recovery, everything to do with drug withdrawal. Then came the pills. First I got off the dilauded, which wasn't too bad actually, no idea why. Then the Oxycontin, which was a BITCH. Yes, I said that. There is no other way to describe it to make a reader understand. Every step down turned me into a person I didn't know. At one point I went on vacation with my mom and didn't come home for 2 weeks. People would text me saying they thought it "must be nice" to have such a fun life. Little did they know... And little by little I have decreased every two weeks. Every time feels like the first time, and it never got easier. Think having the flu times ten. That's how it was.

And now, here I am OFF all pain medicines. Eight months after surgery, and it has FINALLY happened. My friends know what a big deal this is, and how I tried to do it faster than the pain doc would say and would end up backtracking! But it's finally official. Thank God. If I listed the amounts you would die (and don't go robbing me, I turned them all over to a disposal place), and we don't want that, but just trust when I say I was on more than I hope any of you will ever have to be in your lifetime. The thing is, when I speak to other HP friends, it's normal, we were all on that amount or even more, all suffering that type of pain.

The point is not to tell you some crazy story about drugs. It is to tell you that you will be on them after the transplant and you will have to try to get off them. And try harder, and then harder, and go out of the house to avoid going crazy, and take a walk to avoid wanting to jump out of your skin... you get the picture. But, in the end you can do it! I remember my surgical team saying they would be fine with me staying on them for a year and then weaning down. To me that sounded nuts, but I get it now. I am also so thankful I didn't listen to anyone and did it faster than they said. It was so much better for me to just get it over with. I survived it. You will survive it too. And if you are struggling with it call me. We can yell and cry together on the phone. I mean it. Actually, I have done it (right Heather)!

Congratulations to me. Cheers to you!

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