After a long trip we are back with so much accomplished. As you know if you were keeping up with my blog I spent Thanksgiving in Vero Beach, FL with my family. After the holiday we traveled over to the west coast of Florida to Tampa for an appointment with a carcinoid cancer guru, Dr. Kvols. To our surprise it was also the weekend of the ACC championship. So the boys were thrilled. We stayed at the Hyatt just by chance where they were hosting many of the pre-game events. I was a little concerned about dragging the boys with us to Tampa for fear that the focus would be on me and they would be bored. Well when we pulled up and the valet asked us if we were here for the ACC championship event I saw the boys bright blue eyes twinkle. Just another time when we were at the right place at the right time.
The real reason for our trip to Tampa was to get more information on my cancer and see about some new clinical trails that I had researched. I had read many articles about Dr. Kvols and was interested in his knowledge about this rare and complicated cancer. With our medical bills pile raising I was unsure if the benefits of seeing him would out way the expense. Then a few months ago I received an email from one of my carcinoid cancer posse, Bob Paver, who highly recommended that I try to get an appointment with Dr. Kvols or Dr. Warner in New York. Bob found my blog when he was doing research for his on carcinoid cancer and felt the urge to reach out to me about his positive experience. This is what I mean when I write about how God puts people in your life just when you need them.
As I was driving over to the west coast through miles and miles of orange groves, I thought about how unselfish it was of Bob to contact me. It is just a true example how we are all in this together. Life with cancer is not just about the individual themselves. It's about all of us reaching out and helping each other. Looking at the bigger picture of this disease can do so much more then just thinking about your own suffering. I don't know if I am explaining myself clearly, perhaps just saying we are all in this together. Spread your wealth of knowledge to others and share your experience to benefit others. That is one of the purposes of my blog but it was actually turned into so much more.
We arrived at Moffit Cancer Center right on time which is actually early for Mark and the boys. After getting the boys set up in the waiting room with their missed school work and portable game systems we checked in. Everyone was so pleasant and positive. The records that I had sent three times were MIA so I started to panic for fear that this whole trip was a waste. After stressing my concern and begging for them to look everywhere because I knew that they were sent the records turned up. To the nurse's surprise, but not mine, there was a box full. Unfortunately because of the mix up Dr. Kvols did not have enough time to read the mounds of records. So instead he spent a considerably amount of time listening to me go over my history with this disease. He listened with such interested and did not rush me a bit. This just amazed me because he is one of the most knowledgeable doctor in the US about carcinoid cancer and he listen like this was the first time he heard this cancer story. He then gave us all his knowledge about the disease and explained things to me that I had always wondered. Just when I thought I had read, researched and learned everything there is to know about this monster growing inside me, there was more to learn.
After I was done he examined me and asked me all about the symptoms I have or had. Then we went into a conference room while he took some time to review all the scans I have had in the past year and half. After some time he came in and went over everything and every option he sees for me. He did not have any clinical trails that I would be illegible for, because of my advancement, but believes that I am doing everything right. He could not give me a formal recommendation until he reads over my box of records. However, he did give an informal:
1. Continue on the Afinator and Stando because he believes that I will see some stability with that drug. In some cases he has even seen shrinkage. But in my case stability is what we will hope for.
2. Next step in the next few months would be to add another drug that has been proven to work along with Afinator. He wants to save that option until we see what the Afinator would do.
3. The last option would be to go back to Switzerland to receive my last two treatments. He suggested that I hold off until we see what the Afinator will do.
He gave me other suggestions but like I said he needs to go over all my records to see if they will actually be my options. The formal report should be finished quickly. What he did confirm was that I am doing everything I can do and not leaving any stone unturned. He told me to not give up and keep on fighting. He stressed that everyday new treatments are being thought of. In fact, I found that with the FDA approval of Afinator just this May. He was so passionate about this cancer and finding ways to keep carcinoid patients alive.
Finally I asked the million dollar question, "How long do you think I can live with this cancer?" I could tell he was a little uncomfortable by this question but has been asked it thousand of times before by others who have come from all over to meet him. I can imigine that he will never get use to given anyone a time on their life. He cleared his throat and looked me straight in the eyes. He, like every doctor I asked this question to, could not give me any guarantees and told me my cancer is advanced. But what he did say is that if I keep up all that I am doing I could live many more years. The goal is to keep myself alive until a new treatment to cure this disease comes and every minute it gets closer.
At the end of the consult Dr. Kvols gave me a big hug. He then walked out to the waiting room and introduced himself to my boys. He told them to take care of me and to learn from me. I'm not sure what he meant by that but I hope they learn from my will to live everyday for them.
We will make another appointment after the holidays.
Sunny
SUNNY CARNEY After a courageous 10 year fight battling Carcinoid Cancer, Sunny Carney, of Plum, passed peacefully on Saturday, November 3. She was married to her devoted husband, Mark; and was a loving mother to Austen, Logan and Nolan; daughter of Patricia Jennings and the late James J. Jennings; daughter-in-law of Dale and Dottie Carney; sister of Judy Phillips (Ray Jr.), Lynn Pesta (Teddy), Michael Jennings (Vicki Lynn), James Jennings (Sue), Joseph Jennings (Elizabeth), Sheila Fortes (Jim); sister-in-law of Craig Carney (Julia). She is also survived by numerous aunts, uncles, cousins, nieces, and nephews, and was a true friend and inspiration to many.
In addition to being an inspiration to family and friends Sunny inspired carcinoid cancer patients across the globe through her blog, and then her book "The Sunny Side of Cancer. She spoke at numerous cancer events locally sharing stories of her journey which led her from Basel, Switzerland to all of the top Carcinoid Cancer specialists here in the states. She was an advocate for better diagnosis of the disease and for insurance coverage of treatments. She fought with grace and dignity, never letting the pain inside challenge her faith or diminish her love for life.
Memorials may be made to "Carney Family Fund", c/o S&T Bank, 2190 Hulton Road, Verona, PA 15147.
Friends received Monday 7-9 p.m. and Tuesday 3-8 p.m. at Unity Community Church, 215 Unity Center Road, Plum, PA 15239.
Funeral Services will be held on Wednesday at 11 a.m. in Unity Community Church with Rev. Frank Deluce officiating. Arrangements entrusted to CHARLES W. TRENZ FUNERAL HOME, INC.
VIEW GUEST BOOK Published in Pittsburgh Post-Gazette
