Monday, September 13, 2010

The Program gets tougher

I finished my 8th step today and now I begin the amends process which is Step 9. I'm not looking forward to this step because I'm concerned about the reactions I'll get. Still I'm 4 steps away from completion of my 12-step program and only 2 months away from a year's sobriety. I'm definitely a better person than I was 10 months ago.

Off the Bench or as I nicknamed us The Brookhaven Dream Team began our season tonight. I promised the team that my new additions would make a difference. Well, we fell down 5-0 early and I think players started to doubt me. Then we got to bat and won by mercy rule 22-7. My 3 add-ons had about 7 hits combined and led the charge. I felt like Jon Schuerholz as I smiled with pride. We are going to surprise a lot of teams this year.

I want to make sure I mention in each blog something that tells you what it's like to have CF. Whenever I go in for X-rays and they see from my card that the patient has cystic fibrosis, they always ask me where my son "Andrew" is. I have to explain to them that I am the one with CF. Cystic fibrosis was a childhood disease for so long that many in the medical field still aren't used to us living past our teens. Hopefully they'll get used to grandfathers and grandmothers with CF in the next few decades. Or maybe they won't have CF because a cure will finally be found.

I wonder some days if there ever will be a cure. I don't know if I could get used to not taking pills with meals and not setting aside a time to do my therapy. I don't know if I could get used to less than half a dozen doctor's appointments per year and the life or death concerns that comes from each one. I don't know if I could get used to not having a life-threatening disease. Hey, what would I speak about during my motivational speeches? Maybe I could brag about my ability to read any word backwards but I don't think that will captivate the audience as much as a guy with a terminal illness can.

I had to explain to my daughter what was wrong with daddy several weeks ago when she asked if she would ever have to do therapy. I told her that daddy has something that is different than most people. I told her it's like her peanut allergy. You don't like it but you have it and you make the best out of it. I don't know that she got a lot out of it but it made me think of the conversations I'm going to have to have with my kids when they're older.

They're going to have to make sacrifices. They can't date anyone who smokes. They're going to have to learn how to do postural drainage which is when the person slaps the patient on the back, sides and chest to loosen the mucus. That's what my parents administered before the vest machine was invented. They'll only need to use it if we lose electricity or the machine malfunctions. They're going to have to learn about life and death a lot sooner than most kids. I remember that feeling. I don't plan to hide a lot from my kids. I don't want them to learn about their dad from someone else. That's one of the reasons I'm writing The Drive at 35. I want my children to know their father just in case CF gets the best of me before they're teenagers. I don't plan for that to happen but I want to be prepared. The Drive at 35 might just be their one chance to get to know their father - the good and the bad.

The one thing I want them to know is how much they mean to me. I've run with the Olympic Torch, written 3 books and chaired a highly successful fundraising event yet all of those accomplishments pale in comparison to raising two beautiful children and being married to a wonderful woman. They put life in perspective. I've included one of my favorite pictures of Avery and Ethan from the beach in Charleston. Avery loves him so much and Ethan would follow her wherever she goes.

My Tobi aerosol therapy is going pretty well. I don't like the extra hour or so it adds to my medical agenda but still it's for the best. I'm really excited that the doctor didn't need to put me on antibiotics Friday. I've been off them for more than six months. I'm really proud of that fact. I used to be on antibiotics all of the time.

I'm on day 4 of my new diet. I've replaced nutritional bars with bananas and twizzlers, gummy bears and chocolate with water and mangoes. I'm not going to weigh myself until next Friday to see if I've come down from 197. My goal is to be at 185 in 4 weeks. Maybe then I can fit into my skinny jeans...sorry that's the only thing I remember from Sex and The City.

Well, I hope everyone has a good night.



  1. Hi Andy, I enjoy reading your blog & history. I've only known 1 person with CF, & her three children had it too. This was many years ago & I remember many hospital visits. My 26 yr old daughter was diagnosed in Nov 09 with IPAH. My dad has beat prosate cancer, melanoma, pancreatic cancer, but he won't beat stage 4 lung cancer. Life is somrthing else, it tests all the things you once believed in. My dad is 77 this year and celebrrated 21 yrs of sobriety and 57 yrs of marriage with my mom. I hav so much respect for them both, I just hope I can be half the persons they are. Thank you for sharing your life, I believe in miracles everytime I look @ my dad & my daughter. Peace be with you, Gerilyn

  2. Congrats on not being on antibiotics for 6 months so far! That is awesome!! I love you so very much! You can get through this fall and winter too- I know you can. LOVE YOU!