Hi, my name is Kevin and I’m a cancer survivor.
A little about me. I was diagnosed in Oct 2003 after an emergency surgery for severe abdominal pains. Up until then, I had been feeling fine. Even that morning, I felt great. Then all of a sudden, WHAM!! After 15 hours in the ER and an emergency surgery, I’m in the hospital with an ileostomy being pumped full of antibiotics.
So, what happened? Supposedly, I have had PMP for years and it had completely enveloped my appendix and decided on Oct 8, 2003 to burst, perforating my bowels. When the surgeon at St. Lukes in NYC opened me up, he saw all of the mucous, cleaned up what he could and closed me back up. 11 days later I walked out of the hospital. I think that surprised some people who thought it was a miracle that I was even alive.
It took a few of weeks and a second opinion to find out exactly what I had, to find an oncologist that would work with us, and to find Dr. Sugarbaker. The details of all of this is in my blog, so I won’t go into them here, suffice to say it has been quite a journey.
I had my MOAS (Mother Of All Surgeries) with Dr. Sugarbaker in Feb 04, at the Washington Hospital Center in Washington DC, where my wife and I spent our 12th anniversary. My diagnosis included signet ring cell and positive lymph nodes (3 out of 10 I believe), so the prognosis wasn’t great. As a matter of fact, Dr. Sugarbaker basically gave me a 25% of long term survival. But the surgery (10 hours long) was VERY successful and afterwards Dr. Sugarbaker said he would change the odds to 60 - 80% chance of no recurrence. Some people would say that was another miracle (I know I would). They told me to expect to be in the hospital for 3 - 6 weeks. I left after 17 days.
I still had an ileostomy, but Dr. Sugarbaker said that I would come back in 4 - 6 months for an exploratory surgery and he would reverse it then. Oh joy, another surgery. Anyway, I went back 5 months later, went through a toned down MOAS (this surgery was only 6 hours, but still included the heated chemo) and had my guts put back together. After 12 days, I was released and sent home. One of the best things you can ever hear a doctor say is, “I think you’re through here. You can go home.” You just can’t believe how great it feels to put on regular clothes and walk out of a hospital, well, maybe some of you can.
So, it has now been over two years since I was first diagnosed. Two years since I first started chemo. Almost two years since my MOAS and over a year since my last surgery. So, how am I doing now? Well, apart from the “bowel” problems (one of the side effects of an ileostomy, chemo and no gall bladder is diarrhea, and multiple bowel movements a day, hey, no one said this was pretty.
) I’m doing pretty good. For the lack of a gall bladder, I am taking Cholestyramine, which has been a godsend, and I wish someone had told me about it a year ago. I have gained all of my weight back and although I don’t get to the gym as much as I would like, I do a lot of walking. Especially today since here in NYC all of the public transportation is on strike and I have to walk about 2 miles to work and 2 miles back home, in below freezing temps. Stupid MTA.
So, that is a little about me. I’ll be working with Bob, who wrote the first post on this blog, to try to keep you up-to-date on what is going on in the PMP world, share some insights from being a cancer patient and survivor and hopefully bring a little humor to lighten up your day. Believe me, I know we all need some humor after what we all go through.
Well, that’s about all for now. Feel free to leave some comments and let us know what you like or don’t like about the blog or web site. Our main job here is to help turn cancer patients into cancer suvivors, and we need everyone’s help.
Kevin
December 20th, 2005 at 7:14 pm
Hi Kevin,
My daughter Stephanie was operated on by Dr. Sugarbaker on 9/28/05. You recently sent her a message on her web-site. I found this artical very interesting and very uplifting. She is currently experiencing the bowel problems you described in your article. I will mention the
Cholestyramine to her I pray it will help her. She has been a real trooper, but this chemo is just terrible. Continue to feel better, God Bless.
December 20th, 2005 at 8:13 pm
Great blog Kev. Thanks for your work. Your honesty. Your graphic comments. Best of all, your humor. I like the smiles interjected, too.
PMP isn’t pretty, but then what disease/cancer is pretty? The good news is, we do have PMP survivors ready to share with others.
Thanks again, kat
PS what a way to get excercise–walk to work. Brrr
June 15th, 2007 at 7:47 pm
Hi Kevin, my name is Judy from North Carolina, was diagnosed with mucinous adeno carcinoid of the appendix & operated on 4/2/07 - didn’t get all of it, am now in process of talking with specialist - has suggested the MOAS & IPHC - I don’t know at this point if I can do this or not - am in good health otherwise, would like to know if there are other alternative treatments - have you heard of any that are somewhat successful? Are you still clear/disease free? what si your health like now?Statistics I’ve read are not at all good, 43% complication rate?? average life span 22 months after surgery - 27% live 5 years - and I’ve been given 3 years if I do nothing!!!