Sunny Carney Carcinoid Cancer Fund: January 2011

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

Thursday, January 27, 2011

Enjoy your journey!!!

So many times we are in such a hurry to reach the goal we set for ourselves. For some it may be to run a marathon with great time, building a business, loosing weight, or for me finding a treatment that works. We climb the mountain and keep our eye on top the whole way up. We are told that we should not look at the past or think about the obstacles that tried to get in our way as we reach the top of the mountain. Just keep climbing and keep our eye on the prize we hear every step we take. Write down you goals and look at them everyday. I remember hearing my father say over and over again, "know what you want and then figure out how to get it". Besides telling the boys everyday before leaving the house, "make good choices" I also yell out to them, "do you best and then do one more". They mock it and laugh but I know that hear it. However, sometimes I think we need to turn around and see how far we have climbed. See what we got through and how strong we are because of it.

We also need to enjoy the journey on the way up. Love the people who inspired us and thank those who never gave up on us. We need to thank God for the strength to get us thus far. A good pat on the back or a "that boy or girl" cheer will keep us encouraged. This refreshes you and gives you that extra boost to finish the climb. Don't wait until you get to the top to see what you overcome. Enjoy the obstacles as you jump over them. I am not saying to keep looking back in a negative mind set. After all, you can not climb uphill with downhill thoughts. But every once in awhile we need to rejoice in our small accomplishments. Mostly we must remember who is carrying us through the real tough times.

Thank you my friend for reminding me this yesterday.

Enjoy your journey,
Sunny

Thursday, January 20, 2011

Steve Jobs, CEO of Apple

I have been reading several articles and blog posts about the diagnosis of Steve Jobs with neuroendrocine cancer, or carcinoid cancer. Out of those articles the one I found most informative is listed to the right of the page. My heart goes out to anyone who has this diagnosis. I have learned that with all the money and notoriety in the world cancer can strike. That is why I truly believe money, popularity, fame, good fortune and brains are great but in our lowest time we need one thing....FAITH. That my friends is FREE.

Sunny

Saturday, January 15, 2011

Sweet Child of Mine!!!

There are three days in a year that mean more to me and my journey then any other. They are the days that I fight to be here for and never want to miss. They are prizes that my eye stays on when things seem so hard. These dates are written in Sharpie Marker in the inside of my Bible that I open whenever I think I can't stand one more treatment or one more ounce of pain. September 19th, December 15th, and January 14th are the reasons why I do whatever I need to do, no matter what crazy treatment it is, to stay alive. They are my sons' Birthdays and each year it is a milestone to my journey. This year I turned 40 and although Mark made a big deal about it to me it meant nothing. But being here for my boys' birthday means everything to me. Every year I say, "if I can make it one more they will be old enough to handle things on there own." Then days like today come and I think one more is not enough.

Today is my sweet, happy-go-lucky, youngest son Nolan's Birthday. Nolan is our "Sweet Child". He is the surprise that ended up being the gift God knew we need. He brings balance to this high energy, type A personality and intense home. I know I have posted before about this one but he is so easy to write about because he brings such joy to our family. He manages to calm a whole family down when things get a little stressful with his quick wit and adorable grin. His kindness and ability to walk away from a difficult situation making a difference is what really stands out. His love for music is infectious to the whole house. He started playing guitar at age 8, only because he beg us for a year for lessons, which encourage his other brothers to take up drums and bass. Although Austen, being the oldest, thinks he runs the jamm sessions, Nolan has this unique way of being the leader without the leader personalities knowing.

There is nothing better then seeing your child's face on the morning of their Birthday. This morning was no exception. His brothers were already out the door on their way to school when he came bopping down our stairs sing, "Sweet Child of Mine", by Guns and Roses, his newest guitar song. Every year since the boys started school I've made it a tradition to take them to breakfast before school on their special day. Well as stated in yesterdays post I have been struggling with some horrible bone pain which is unbearable at night and in the mornings. So this morning I was hoping Nolan forgot or being 12 now may think he is too old. I had about two to three hours of on again and off again sleep and spent the last hour sick to my stomach. Honestly today I was in no shape to be taking anyone anywhere. But once I saw his excitement I could not say NO. So I put a baseball cap on, traded my slippers for boots, and put on my long wool coat on so no one would notice I still had my PJ's on. Yes my Plum Mums I wore my PJ's to the Oakmont bakery.

I dropped him off at school, 45 minutes early I have to add because he had a student government meeting, with 4 dozen donuts for his class. I sat for a minute in the parking lot watching him talk to every person as he walked to the door with his hands full of treats. I jumped out the car to run and grab the door for him. As I open the door he smiles at me and says, "Mom you look great! You walked from the car and did not limp once. You're getting better. Thanks for breakfast." Once again he left me speechless. He left me with strength and hope. I did not look great. In fact I did not want to get out of the car for fear of seeing another mom I knew dress to the nines and me looking like I had cancer. But when I saw him struggle to open the door I did not think twice about the way I looked, the pain I was in or the funny limp I have from the surgery. I just wanted to help. However I did not realizes that God gave me Nolan to help me.

God knew that we needed him to give our family strength. He knew that when he put four overachieving, high energy people in one family he needed to add an ounce of joy that will make a difference in our house everyday. He knew that when Logan and Austen are fighting over who knows more in Science or which one got high score on some stupid video game we needed Nolan to calm the storm. He knew that when I was to get sick I needed someone to slip notes under my door or come in with warmed up heating pads for my back. He knew that when tears are falling because of fear and pain we needed someone to wipe them away with a funny comment or just a smile. So on his birthday he may be open presents but the real present was giving to me on January 14, 1999. He is one of my three lifesavers.

Sunny

P.S.

I am looking for some information. Please read yesterdays post as well.

Thursday, January 13, 2011

Decisions

Hello everyone!!!! All is going okay here in this snow storm. My femur and hip is recovering great. I am walking without crutches most of the time. However the rest of me is falling apart. My bone mets are flaring up and the pain in my spine, chest, shoulders and arms are becoming unbearable. The pain is terrible but the inability to hug my four boys is really driving me crazy. Just a few minutes ago my fourteen year old was leaving for school and he gave me a gentle hug (as we call them since the tumors spread to the bones) I thought I was going to crumble. It seems like when I get rid of one thing another pops up. I don't know if its just that I notice things more because the more intense pain is gone? I am thinking though maybe its when you take out one carcinoid tumor it stimulates the others? I think I read that somewhere. If anyone can enlighten me on that please email me below.

I need to reach out to my carcinoid posse or anyone else that has the knowledge of treatments. We are at a crossroads with my treatments or decisions of treatments. The bright side, there is always a bright side, there are some options. I am just not sure which road is best for me. So I would like to use today's blog to post some questions to my carcinoid cancer patients and doctors who read my blog. Please email below if you have any answers.

1. Has anyone tried the Induim 111 that Dr. Delpassand is offering in Houston, TX? If so what were your results? Also, what is the cost? Does anyone know who it works on liver and bone mets that have uptake? I have been in contact with Christianna several dozen times and I seem to get different answers every time. I heard its for early stages but then Dr. Dlepassand told me it would be okay for me even though I am advanced. I am schedule to start the year long treatment in Feb.

2. Has anyone tried the LU77 that Dr. Delpassand is offering in Houston, TX? I hard that this would be a positive option for me because it works really well on large tumors but the cost is outrages. They are waiting for FDA approval any day on this treatment but any day could be tomorrow or 5 years from now. Does anyone know anything about the results of this treatment?

3. I have been on Afinator but because its not covered under my insurance we are struggling to pay for the $5000 a month price tag.So before my surgery I went off of it. I am not sure if that is why the tumors are flaring up either? I have my doctor writing letters and fighting the insurance company but he tells me he's been through this before with other patients and its not been successful. I had a friend reach out to me about how to fight it but I have tried all his suggestions and nothing. Afinator was working for me. So this is very frustrating. Does anyone know where there is a study or clinical trail going on so I can participate in it? My oncologist will send me anywhere to get the drug.

These are just a few options. Several others on the back burner but these are the three we are entertaining now. Please if anyone has any information on the above please email me below.

I know the true answer will come in pray. Last night Mark and I were praying about all this and relief of the pain. In the middle of the night I got up to take my steamy shower to help with the pain and it came to me to reach out in my blog. I try really hard to keep this an upbeat positive and God written blog. So please take this as a positive out pour.

Well off to get the new bone treatment that is replacing ZOMETA. Sounds promising for bone lost!!!!

Stay warm my friends,
Sunny