Sunny Carney Carcinoid Cancer Fund: October 2010

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

After over a decade of suffering from Carcinoid Cancer, Sunny Jennings Carney has decided to fight back. She has currently undergone two proven treatments in Basel, Switzerland and is planning to return for two more. She is also planning on going to Houston, Texas for a six month period to undergo experimental treatments that look promising but are not FDA approved. She has exhausted all the FDA approved treatments here in the United States and will not accept that this is all there is for her. She has dedicated her fight to help others understand this rare cancer and to find successful treatments in the United States. Her strong faith in God and will to never quit has turned a 6 month life expectancy to over two years presently.

Below is an entry that was written by Sunny's husband Mark when she had her third bout. To become updated on her journey please enjoy her posts.

Please check back for updates and event information.

Sunny's husband Mark tells their story...

A mother of three boys, a daughter, the baby sister to a large family, an aunt, a godmother to several, a trusted friend, an outreach volunteer, a business owner and my wife. Sunny Carney lives up to her name every time someone speaks to her; she is beautiful both in and out. She has been my biggest motivator, my rock and my inspiration in tough times, my biggest fan in good times, and most importantly my best friend. Told 14 years ago that having children may not be part of our future because of ovarian cancer, she kept the faith, and is a wonderful mother to our three sons- Austen, Logan, and Nolan. She is always ensuring that they know the Lord, love of life, kindness to others, hard work, and occasionally when to "shape up".

Her boundless energy, healthy lifestyle and positive attitude are infectious. She has served as president of our children’s PTA, organized committees that benefit those who are less fortunate in the community and led drives for those who have been caught up in unfortunate situations. She has done so much for others, usually without letting anyone ever know, I could not begin to list them. Her strong faith in God and modest upbringing has given her a sense of giving that only she can explain. When she successfully started her own photography business, she also started a non-profit division photographing family portraits for area families fighting cancer. Her friends say she is amazing and she simply shakes her head and wonders what all of the fuss is about.

Her mother, sisters, brothers and large extended family will tell you she is the one you can count on to lend an ear when needed and never judge. She was raised by her loving mother and father who was the warden of the Allegheny County Jail and actually spent most of her childhood in the residence connected to the jail. At a young age she witnessed more of life’s tragedies and obstacles through her neighbors, the prisoners, than most of us can imagine.

Although all of the aforementioned is remarkable it is not what makes her truly special. Sunny is a two time cancer survivor and now is currently fighting for a third time. After beating ovarian carcinoid cancer and undergoing serious surgery for carcinoid tumors in her right lung just three years ago, the carcinoid tumors returned in her lymph nodes, liver and bones. The size and proliferation throughout the liver of these tumors mandates immediate chemotherapy in four treatments over the next few months as well as monthly octreotide treatments. These painful treatments will hopefully stop the growth but are not a cure. There are numerous tumors in her spine, her skull, her hip, her leg, and her shoulder...all in the bones and she will wait on potential radiation to fight those.

What my wife has is Carcinoid Cancer Syndrome, an endocrine disease which is rare and spreads from organ to organ. As of right now the only known treatment for remission is administered by renowned clinics in Europe. However the treatment is not covered by our insurance. Our doctors have encouraged us to start raising money and matching grants could follow. Her lead oncologist strongly believes that Sunny would be a prime candidate to be a voice to get the message out regarding carcinoid cancer syndrome, bring this treatment to the United States and encourage approval from the FDA. Without this treatment, the tumors most likely will continue to metastasize in other organs and her fight will be ongoing. Sunny has set up The Sunny Carney Carcinoid Cancer Fund to support her treatments. She believes that once she beats this cancer she can make a difference to others also suffering from Carcinoid Cancer.

Mark A. Carney

Sunny Carney Carcinoid Cancer Fund
C/o S & T Bank
2190 Hulton Road
Verona, PA 15147

Wednesday, October 27, 2010

Decisions

I have always taken pride in the fact that I am not indecisive. Small choices or dilemma's I have no problem solving. I can pick out a wall color or an outfit and on I go. I don't deliberate on little things..... waste of time. When making a big decision especially a life changing decision, I pray and trust that God will lead me in the right direction. I then lay out the pros and cons and make the decision. I may sleep on it for a day or two but once I make up my mind I try to stick to it. I don't think of what would of happened if I chose the other road nor do I regret the road I took. I hate to over analyze it or obsess over it. Even with my treatment choices I can be a bit impulsive or quick. At times it drives Mark crazy because he is more of a thinker on the big things and I am more of a, "lets get it done and move on". But this last week its been difficult to move on because I had to wait for more test results before I could make a decision. Yesterday after my appointment with my main oncologist I finally laid out my treatment plan. I felt a bit disappointed and fearful yet relieved that I don't need to think or even obsess over it anymore.

Dr Freidland agreed with my orthro oncologist that my bones in my right hip and right femur need replaced or fixed (not sure what the right terminology may be). The cancer in the hip and femur is just eating away at the bones. Although I was hoping to start the experimental treatment in Houston, TX right away I need to put it on hold for a few months and have surgery. It is truly not what I wanted to do but I made the decision and its time to move on. I prayed so hard that God would lead me to the right treatment yet deep down I really thought I was not going to have the surgery. Although that is what I was hoping for, once my doctor said it needs to be done soon I sucked it up and I am now preparing for the long recovery. I have scheduled to be in Houston at the end of January.

After my appointment and a treatment, Mark and I went to lunch. The best thing about appointment and treatment days is that Mark and I are forced to spend time together. At lunch I told Mark that I was hoping that Dr. Freidland would tell me that the surgery could wait and to get on a plane to Houston. Then I went on to say I was hoping that my bones where not that bad and the pain was in my head. I then whispered, because I guess I felt if I said it out loud it would mean I was defeated, "this fucking cancer and all the crap I am doing to get rid of it is hopeless". He gave me that look he gives me when I do something off the wall or crazy and shook his head in disbelief that I even thought that. Or maybe he was surprised that I thought I was not really in pain. Whatever he was thinking I could tell he was disappointed in me. At that time it hit me that maybe this is my hope. Maybe this surgery is what I have been hoping for and just did not realizes it.

Charles L. Allen said, "When you say a situation is hopeless, you are slamming the door on God". I had just read that quote the night before. For a brief moment that is exactly what I was doing.......slamming the door closed. But like He does so often, especially when you have a relationship with Him, he turns you back in. God puts those with faith on a small leash. He lets it out once in awhile but pulls it back in when you start to wonder away. Evidently he lengthens that leash and lets you go further away and He then has to yank it harder and harder to get you back. But what I know from my own life is that he never lets that leash go. At times you may feel that you are lost but if you put your hand on the leash and slowly follow it back you will find God at the end.

I don't want to have the surgery. I am surely not going to pretend that I am not scared or not angry. What I am feeling though is grateful that I have faith. Faith that God made this decision and faith that he is here with me through the battle. That faith truly gives me the hope that I need to fight this cancer. I don't want to lose that hope again because with out it I have nothing.

Sunny

Monday, October 18, 2010

So its been forever since my last post. There is a list of excuses I could give as to why I've been slacking on my posts and updates, but truthfully I think I have just been avoiding the whole cancer subject; just going through the motions of treatments but not giving it any attention. Not to mention the point of limbo I am in not knowing what road to take with my treatment options. It truly at times can be so overwhelming that I just need to shut down for a few weeks and try to live like a normal non cancer life. However, I have learned that it does not go away and eventually I need to suck it up and start fighting again.

Reality hit me today when I went to my orthopedic oncologist appointment. As I was sitting in the little room they shove you in to make you think that your wait for the doctor is almost over, my mind started to wonder. I could not believe what I have been through in the past 2 1/2 years....I guess, am going through. I thought about the day I was told about this monster inside of me and the day I told my boys. Then my mind started going through all my treatments, my trips to Switzerland, my trips all over the US to specialist, and the whole battle in general. I started thinking about my last scan results and I predicting what this doctor was going to tell me. I did not have Mark with me today to distract me and the magazines were from 2008 so I did what I try so hard not to do and let my mind get the best of me.

Dr. McGough, Pittsburgh's finest orthopedic oncologist in my opinion, came into the room and instantly jumped right into the last bone scan results. I had already been told a few weeks ago from my overall oncologist that there has been a significant amount of growth in the bones especially in the femurs and hips where most of my bone pain is. So the news that he was telling me was no surprise. He then suggested surgery on the right hip and femur then eventually the left side. Again not new news, in fact it was something I've known in the back of my mind would have to be done sooner then I'd hope. We discussed timing and compared the timing to my treatments in Houston, Texas. Then out of nowhere my tears start flowing. He and the other two doctors that were in the room with us kept a straight and emotionless face. I could tell that they have seen this reaction hundreds if not thousands of times. One doc handed me a tissue and they went on with the exam. I was glad they did not try to console me or pity me but instead get on with the next step.

When I got in the car I took a deep breath or let out the breath I was holding....not sure which. I realized then that the way those doctors handled my tears is the way I need to handle my fight. I need to get on with the battle and not dwell on the bad news. I need to fix the problems and not avoid them. That is why I posted today. I needed to get it out of my mind and on to this screen so that I can get over it and start fighting again. I need to start focusing on fixing this cancer, start praying harder, and stop obsessing of the unknown. What I really NEED TO DO is BELIEVE in myself and my FAITH in GOD.

I have a call into my oncologist and will keep my blog updated on my treatments as soon as some decisions are made.

Sunny

Saturday, October 9, 2010

Tomorrow

I am so excited about the third Annual Sunny Carney Carcinoid Cancer Wiffleball tournament tomorrow. Cancer can take away a lot of happiness in your life.....IF YOU LET IT. Raising awareness events can be depressing and sometimes just a reminder of what this cancer can destroy in you. I refuse to participate in those events because quite frankly, I am just not strong enough to give this cancer any credit. So when my husband and family were brainstorming on how to do our part for carcinoid cancer we wanted to come up with something that everyone enjoys to play and you don't have to be a pro to participate. The simple back yard game of Wiffleball was a fun suggestion that popped up and it all went from there.

It is truly an amazing day. A huge turnout of people all in one place having a blast with their family and friends. It has not only brought my family together but it has merge several communities in the Pittsburgh area. This year we have people coming from New York, New England, Florida and North Carolina to participate. With grills smoking, children bouncing from inflatable house to inflatable slide, bats swinging, beer pumping, music blasting, and most important faces smiling makes it a positive way to raise awareness of the invading monster called carcinoid cancer. It also has help me with my enormous medical cost and has helped a few other families fighting this cancer with their cost.

By the end of the day I will be dead tired and sore from all the hugs. But I will have that feeling that I get so often when I am fighting this cancer. Not the feeling of defeat or breakdown. But the feeling of love, support and mostly HOPE.

Please come out and feel that feeling too. See all the information above.

Sunny

Tuesday, October 5, 2010

10/10/10

The Third Annual Wiffle Ball tournament for Carcinoid Cancer is this Sunday. It's an amazing event that is all about fun, food, community and family. It's a fun back yard game that turned into an event with over 500 people. Come to play or just come to enjoy the picnic. Some amazing Chinese auction items.