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
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
C/o S & T Bank
Wednesday, December 23, 2009
The Hot Line
By Rosie DePastino
I'm lying and thinking with
Plenty of time
It seems that the world is
Just one up hill to climb.
The question occurs "can we make
It or not?"
If we quit at the middle
It can be a far drop.
We sometimes need courage and
Someone to lean on
It gives us the strength
To manage to see dawn.
They pull us up and out of our
One thing you don't need to be
set back in regression.
It's sometimes hard to
Count our gifts
But thinking about worse others
Should give us a lift.
A gift is nice, a present too
But the best gift is prayers,
Love and a smile
When you're blue.
So in the darkest hour when
You think you're all alone
Remember there's a hot line
To a very special phone.
I won't tell you whose on it
For I guess that you should know
But someone'll always answer
And He'll tell you the way to go.
I was climbing up the hill
And I almost had a fall
But I guess you know just
What I did - I slid and slid and crawled.
Until I found my courage
And picked right up the phone
And now I call the Hot Line
When I feel I'm all alone.
I've been waiting until the perfect moment to post this poem. What better time then two days before Christmas. A teenager at the end of her life did not lose faith that anytime she had a special hot line to call God. She believed that he was there even when she was at her worse possible time. She did not ask him to cure her but to keep up her spirits while she went through this cancer journey.
There is one question I ask when I read this poem. How can a young girl fighting for her life still have faith that God has not forsaken her, when many who have everything don't believe? Something to remember when we open all those store brought gifts this season. The greatest gift does not cost a dime and is free to us anytime. GOD!!!!!
Have the MERRIEST CHRISTMAS ever!
Friday, December 18, 2009
Have an amazing day. If you want it to be then you can make it be.
Tuesday, December 15, 2009
December 15, 1997 is a date I will remember always and treasure so deep in my heart. On that day God gave me a miracle. God knew exactly what he was doing when he blessed our family with you as our second son. I love you more then you could ever know. I am so glad I can spend your 12th birthday showing you how much you mean to all of us. Thank you for being the best brother and most amazing son.
Here is something I jotted down for you. I wish I could express my wishes more elegantly then this but treasure it and know that it is my gift.
My wish for you Logan
Son, I wish I could fill your life with nothing but Joy
so you can always stay an innocent little boy
Son, I wish I could make all your wishes come true
so that you will never feel sad or blue
Son, I wish I could fulfill every dream you may see
so you can know how happy you have made me
Son, I wish I can gift you all the riches around
so all you frowns are turned upside down
Son, I wish your life could be nothing but fun
and all your nights and days be filled with sun
Son, I wish I can take all of life's pains away
so you can have nothing but glorious days
Son, I wish I could show you how to have strength in times of despair
so you can have faith and never have fear
Son, I wish I could live every single day of your life
so that I can take on all your strife
There is so much I wish for you my dear son
but I can not give you because your life would then be done.
You need to have all that bad that comes with the good.
Otherwise you will never know were you stood.
You need to learn how to change obstacles into opportunities
that way you will see
how wonderful living your life can be
You need to put your faith in God above
so you can feel His most amazing love
If I could wave a wand and grant all my wishes true
Then you will never see how much I truly love you.
So on you birthday I will gift you all the above
but tomorrow I must continue to fight
so I can teach you to look for the light.
Everyday is a gift I want to say
so that your birthday is not just one day.
P.S. Happy Birthday my wild loving boy!
Wednesday, December 9, 2009
Sunday, December 6, 2009
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.
Tuesday, December 1, 2009
Today's sunrise like everyday's was amazing. After trying hard to wake anyone to come along and getting several roll overs and no answers I almost gave up and went back to bed. Then as I was putting away my favorite hoodie my thirteen year old come yawning down the steps. He rubbed his eyes and said, "Mom can I have a turn to go with you?". Austen has never volunteered nor ever wanted to get up at 5:30 in morning to go sit on the beach with his mother. I was in complete shock but pleasantly surprised when he asked. Of course I took him up on it. I explained to him that it takes about 35 minutes for the sun to completely hit the sky and that I like to watch the whole thing. He said he understood and still wanted to come. So I wasn't going to push it anymore and rushed him out the door.
As we sat on the beach in the dark waiting for a glimpse of color Austen asked me why I enjoy this. I really did not know how to answer his question without him thinking I was being nerdy or just emotional Mom. As things go, lately everything I do or say to him is "just not cool". So I tried to explain it in his terms. I explained to him that seeing a sunrise reminds me that no matter how hard the day before was a new day is coming. The sun will always rise again no matter how many problems or battles you have. I basically told him that there is always a new day to look forward to and watching the sun greet the day reminds me of that. There is no better way to see faith and hope then in a sunrise. He shook his head so I think he was getting what I was saying.
As we sat on the blanket we talked about all kinds of things. Almost like what we use to do a few years ago. We just caught up with each other. I knew that God had a hand in him waking up today. We really needed this reconnection. The sun slowly started pushing it's way up over the ocean. Austen then looked at the sky and saw all the amazing colors. All he could say was, "Wow". I started snapping my shots and he asked if he could take a few. I set the camera and handed it off to him. He just started snapping like me.....but differently. He really enjoyed himself. Logan and especially Nolan have been my sunrise buddies several times. Each one enjoying the morning differently. Now Austen can be added to the list.
Right before the sun made it's final destination to the sky Austen mumbled behind the camera lens, "Mom, I see why you do this every morning. This is so deep". He handed me the camera and sat down on the blanket to see the last few minutes of the amazing colored sky. I did not say a word because I wanted him to feel the peace that I feel when I am alone and in the zone. After the colors where gone we both got up and started to walk. He could tell I was in some pain so he grab my arm. As we walked up the beach to the walkway a morning jogger passed us. I made a comment about how that use to be me a year ago and how I miss being able to do that. He then said, "but you did not notice the sunrise then....like you do now Mom". I felt like kicking myself. I just got finish showing him one of God's miracles and I sounded as if I lost faith. He then added, "Mom you are so tough. Don't worry about that stupid stuff." I then realized he sounds like me.
Just another moment that shows "The Good In Cancer".
Wednesday, November 25, 2009
Tuesday, November 24, 2009
As Mark and the boys belted off U2's finest, "It's a Beautiful Day", I could not help but think what a beautiful day and everyday is if you make the choice to live it to the fullest. The drive to Florida is like second nature to me. I have been on this route at least twice a year ever since I was a little girl. Florida was my father's haven and wanted it to be a haven for his children too. Each road stop, mountain stop or tourist trap have some kind of fun memory. I can still hear my father presence when we drive through the West Virgina and Virgina mountains that he loved so much. His words, "this is heaven on earth", still ring in my head every time we hit that spot on the trip. In fact, I even repeated it to the boys this time. They gave me the same reaction I gave my dad, "you got to be kidding me. This is all heaven has?". But now I get what he was saying. This whole experience is pure pleasure if you let it be.
As I sat in the front seat and looked out to the most amazing sky I realized that just two years ago I was wishing I was almost to our destination. I did not know then what cancer was going to teach me now. In fact I remember that each of us had our own headset playing our music of choice while we tried to block out Mark's 80's rock. The only communication we would have with each other would be them asking me to pass them some food, them asking Mark the famous, "how much longer?" question, or an occasional "he's touching me". Now we actually talk about things. Things that matter, things that don't matter, or the beauty of the sites. We even nicknamed our youngest "Cliff Claven" because he gives us some odd fact every hour or so. He is so funny when he is trying to be serious. He is Mark all over. It sounds like this car ride is a perfect "Hallmark" movie special. Well I will tell you it's not anywhere near perfect. However, to me it's "heaven on earth".
After the song ended Mark turned down the stereo a little before the next track began. He reached over and grab my hand. He could see that I was not feeling well and he told me that he would pull over when I needed him to. I told him that I was perfect and that I am enjoying every minute of this day. He assured me that he was not rushing and we can take our time to get to Vero. In my joking manner but I was truly serious I said, "let's take our time forever. When you have what I have there is no need to rush to get where I am going." Unaware that Logan, my middle son, was listen we heard him chime in. With a very low tone, so low we could hardly hear him he whispered, "I wish I could stop time for you Mom". Although that moment was precious it was broken with his older brothers comment calling him a dork. Then a shutup followed and a you shut up after that. That is when we knew that life was normal again. Realizing how special simple times are is a gift that cancer has given me. Another "GOOD" in cancer I found just riding in a car.
P.S. Along with spending Thanksgiving with my family, this trip was also planned to fight this incurable cancer. Next week I will be seeing another carcinoid cancer guru in Tampa FL. Please keep me in your prayers.
Monday, November 16, 2009
I tried every excuse though not to go. I thought, "if Mark and the boys fight me about church this morning, what they are wearing or slowly get ready....I am just going to give in and go back to bed." But for the first time since Mother's Day, because that day I asked to go to church without any arguments and arrive on time for my present, they just got up and got dressed. "Darn" I thought, "I guess I cannot use their behavior as an excuse not to go." We actually arrived one minute late which is about 10 minutes early for the Carney Clan. There were no arguments in the extended SUV as to where they where going to sit (which I will never understand anyways because I sat on the arm rest while my other siblings piled in a small car when I was growing up. My boys have a three rows of leather seats with headsets to watch a movie. Any seat to me in this automobile looks like luxury.) So I figured I was meant to hear Pastor Frank's message since with God's grace my family was the perfect church goers this week.
For the past eight weeks we have been studying the Beatitudes. Yesterday was, "Blessed are the peacemakers" Mathew 5:9. I sat there with one of my three boys on each side of me and decided that this message would be for them. Case in point is that even in church they need to be separated. After all, I know what a peacemaker is because I have three boys, a feisty husband and the youngest of a big family. I've been a peacemaker all my life....so I thought.
After listening more intently I learned what it really means to be a peacemaker. Being a peacemaker is more then just resolving conflict. It's about giving others actual peace when they are going through a battle that you have already experienced. It is the choice of sharing your experiences with others so that it is easier for them. God wants us to be a person who shares hope. As believers we are obligated to be an example to others and be there for others. "Two people are better than one. If one falls down the other can help them up. But it is bad for the person who is alone and falls because no one is there to help." Ecclesiastes 4:9-10
I was able to somewhat understand the answer to the question that we all ask when we go through difficult times.....WHY? In my words the answer is: only God knows. I never believed that God gives us evil or hardships because of our actions in the past. But what I learned is that God may let them happen so that we can turn to him and help others turn to him. Sometimes we don't know that we need God until that's all we have left. Then with our faith we may crawl to him and he then takes over. That is when we see it is never to late to turn to God, but the earlier the better because your pain is less.
We are then to use our brokenness to help others so that they can experience your peace. I have always said that is what I wanted to do with this blog. I want others to learn from what took me so long to learn. It may be with different treatments, new information on this rare cancer I have found or my experiences through this journey. Or I may just inspire one or two of my blog family to not give in to there burdens or give up. Whatever we all are going through it is tough and I want others to have peace. After all, everyone has there own cancers.
Friday, November 13, 2009
One particular email I received today stood out. It was from a cancer survivor that reads my blog. She is waiting for results from a biopsy that her son just had and she is fearful of the outcome. She said that she needs to know the Sunny side of waiting. It brought me back to when waiting for results would overcome my life. I use to pace and pace for days carrying my phone around with me everywhere I went just in case the doctor called. I don't do that anymore. I don't let it consume me because I realized that would mean that the cancer is winning. It is affected me both physically and mentally, which is giving it more power then it deserves.
After reading her amazing email I thought about what I could say to her to let her anxieties not take over her life. All that came to my mind was have faith. Faith that whatever the outcome may be you are not alone. Worry about what you can control and let God handle the rest. When you offer it up to him you get a whole new sense of peace. A peace that I have never felt until I decided to give it to Him and let Him take a hold of the wheel. Let go of trying to control the situation and let God do what he has promised us he will do. Do what ever you are able to do to help the situation then let go of the worry. Sounds easy right! Well it is.
I try very hard to live up to what I say. But there has been times when I catch myself trying to play God and control a situation. The famous comment someone says to you when you are finding things difficult is "God never gives you what you can not handle". Well there are times when I wish God would stop thinking so highly of me. Faith that I can handle what ever comes my way is what gives me the strength to hold on. Having true faith means you no longer need to have a sense of control over things that our out of your control. You lose worry and gain the greatest sense of strength and calmness.
There are times when I just feel like becoming a turtle and crawling in my shell. I have also had times when I thought it would be a lot easier if I just take a break from the fight for a while. I have become tired and weary so I just want to sleep. But I refuse to lose my faith. Faith gives me the courage to let go and see what God can do. I am not saying that because I have faith God will give me a miracle and cure me. However, I do believe it could happen. But my faith is more simple then that. It is knowing that while I am climbing this mountain God is right next to me holding my hand. I have seen some amazing things happen because of letting go and letting God take a hold of the situation. And when I feel that faith falling I then pray and it God puts someone in my life to bring it back. Yesterday it was Mark. Today it was all the emails, text messages and phone calls I received.
Thursday, November 12, 2009
I have had a difficult week and today Mark decided to give me an intervention to snap me out of the funk I have been spiralling down too. The role reversal of Mark giving me the intervention was quite humbling. The motivational words that were coming out of his mouth where way to familiar. All they way down to actually bullet pointing exact situations to prove his theory that I am slipping into the "dark side" of cancer. He did not pull out the white board and pointed like I have done with him but I think if he knew where I hide it he may of. As he was speaking I can see the wheels in his head turning trying to actually remember my exact words when he is the subject of concern. I realize now that the blank look in his eyes after a few minutes of me having my pump-up meetings with him was him not showing disinterest but him really taking mental notes.
As Mark was talking it click to me that my attitude about this disease and the way I choice to battle it affects everyone that I am in contact with. We have had a few uncharacteristic incidents with one of our children. So this morning Mark and I were summoned to the principals office where the main topic was this child. I said to one of the many adults in the room, "let's get to the root of the issue" because it just could not be about his mom having cancer. "When did you notice a change?" I asked. She told us almost two weeks ago. So after coming up with some solutions with the group on how to "fix" my already perfect child I decided to go back to what went on in our life two weeks ago. On the ride home from our son's school I went over every situation that could of been the root to my son's change in prospective. I started rattling off doctors appointments, scans, results of scans, death of a friend, my unexpected trip to the emergency room and even rambled about running out of bread and cereal. Finally, Mark looked at me and said, "YOU have changed. Your attitude has changed. Your ambition has changed. Your smile has gone away. Your laugh is not as loud. Your hard work ethic is falling. Your eyes are sad. You are not the Sunny that we all know."
He continued to list things that I would of never let fall by the waste side no matter how sick I was. The one that hit me the most was telling me that I am letting go of my passion to beat this cancer. As tears filled my eyes I knew deep down he was right. I've been letting cancer define who I am. When I was told of my relapse I decided to do whatever I could to not let people look at me and see cancer. I would not and still don't accept pity or someone feeling sorry for me. Cancer is part of me but it is not who I am and it does not define what I can do. However, I am afraid that in the past few weeks cancer has beaten me down. I have become tired....too tired to fight. That attitude change has changed the whole dynamics of our family. A change I am not willing to accept until I cannot do anything about it.
I have not given up and will never give up. All the same, I have not been the fighter I usually am and it has affected those around me. I don't think in our 15 years of marriage Mark has every had to tell me not to give up on anything.....until today. He told me that it's always been a given in our family that I am the rock that motivates the rest. And when the rock stops being hard the whole mountain falls. With this realization I have learned that my action on how I handle this cancer will teach all those important to me how to fight any obstacle that comes their way. Mark, my boys, my family and my friends will feed from my attitude. If I want them to look at me with hope and not pity then I need to act like I have hope and not fear. My son told me this evening that he knows I am getting sicker and he is scared. I can only think that my action in the past two weeks have made him feel that way. All I can do is go forward and let my strength shine on him. No storm is a match for a "Sunny" attitude. So the fight continues.
Sunday, November 1, 2009
Although the above mention sounds like he was a great man, more then that he was a great father. The hurt in his wife's and children's eyes told it all. I wanted to take all their pain away but I realize that is impossible. All I keep thinking is that death leaves a heartache that no one or no action can heal. However the love you have for that person that is gone leaves memories that no one can every steal. Memories that they will cherish until they meet again.
This all brings up the question I have wrote about so many times...WHY? I am wondering when will I know the answer to why a 12 year old little boy and a 8 year old little girl have to feel this pain. Or why a family that has given to so many have to suffer so much. Or why a wife who has been a dear friend to me in my lowest times deserves this lost. When will I get my answers...maybe I should stop asking.
I read this quote in a book that I read to my boys when we lost a dear family member almost two years ago. I wrote it down in my journal even before the cancer returned. I don't know why but it just stuck in my mind and I wanted to remember it. It goes like this:
Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.
I know that Bob is in a better place and I know his wife believes that too. But how is knowing that going to take the pain away from the love ones left behind away? I wish I new just that and then I will stop asking.
Sunday, October 25, 2009
Wednesday, October 21, 2009
Today I decided to observe some of the things that are going around me in a room full of cancer patients waiting to hear their destiny. Mark, was cracking up at me because I was sitting with my little "notebook" laptop jotting down everything I saw. He leaned into me and whispered, "you always come in here with blinders on. Now what are you doing?". I told him I was living. I am no longer ignoring what is going on in this world of cancer.
This is what I observed:
1. Rude secretary completely clueless that each person she is snapping at have so much more going on in their life then hating there job. God help her.
2. Worried elderly lady holding her husbands hand as he sits in a wheelchair with an IV in his arm and a smile on his face. She is thinking of her future without him, he is looking at the young Drug rep sitting across from him that is wearing a short skirt and sitting with her legs uncrossed. Sorry Mark pointed that one out to me.
3. Mother and Daughter sitting very close to each other while surfing the web for wedding gowns. Mother wearing a beautiful red scarf on her hairless head and daughter hugging her so tight. They are so happy despite the battle.
4. Mark sitting next to me telling dirty jokes to another elderly man. The man is laughing so hard I am scared he is going to fall off his seat. However, the snotty lady in the J. Crew cashmere sweater, I know that because I just got the catalog yesterday, is giving Mark looks that are dirtier then his jokes. "Get I life lady". I just smiled at her and she looked the other way. She must waiting for someone because she's to mean to have cancer.
5. Several names being called out at one time by the mean secretary. The patient jumps up with excitement because it's finally their turn. They quickly lose that excitement when they are asked to stand in line and then follow the nurse into another room to be injected. Like a group of cattle being herded to the next step of their fate. I've been there, done that.
6. Automatic doors opening and closing with patients and their cancer buddies coming and going. Coming with anxiety and leaving with exhaustion.
7. Three Television in three different corners of the large pen all with different stations and volume turned down. WTF are they doing to these patient. Just teasing them. I decided to walk over to one and turn the volume up. Now I see a bunch of happy faces.
8. A husband and wife dressed in designer clothes sitting prim and proper. They are not wanting to look around for fear of what they may see. They are also afraid to get comfortable because they think that they don't belong here. Probably cancer newbies. Reminds me of Mark and I way back when. Not sure which one has the affliction. I would like to see them a few months from now to see how they change.
9. A young girl with a beautiful face but tears in her eyes. She is bald and scared. She is sitting next to me all by herself. I decided to reach over and tell her it will be okay. She puts her hand on my arm and shakes her head. Me in 1995.
10. Oh my favorite nurse just walked in. She has that smile of peace on her face. She shoos Mark to the next seat and sits down next to me to give me a hug. I pull out the big bag of lemon candies that I bring for her other patients. With Hillman's cut backs they discontinued that treat for the chemo patients who have mouth sores. She sneaks the bag in her lab coat like it's a drug deal or something. We laugh.
11. That same nurse moves down next to the young girl who is next to me. She starts to explain the scan to her. I am so relieved that this girl has her today. However, I want her too.
12. A middle age man, okay my age, sits across from me with his brother. He is wearing a black Under Armor running suit. He is fit and looks perfectly healthy. He is drinking that nasty crap they make us drink for some kind of scan that I try to forget. I am lucky that I am small so I only have to drink two bottles....he has three, yuk. He is making faces and gaging. His brother is laughing, but I can see the pain in his eyes. It's that kind of laugh that you get when you are really nervous and don't know what else to do. He asked me if I have ever had to drink it. I shake my head yes. Mark adds, "They should serve it with Jim Beam". God sometimes he is so embarrassing.....he got a big laugh today. I told the gentleman to hold his nose and just suck it down. He tries and spits it all over his black jacket. Oh well! Mean secretary is coming over. Oh no!!!!
13. A family of brothers and sisters from Ohio. I know that because they asked the brothers across from me how to get on the PA turnpike and conversation went on. They are sitting close while they take turn pacing back and forth. Each one of them catering to their mothers every need. One brings her a snack, another a drink, another holds her hand, while the youngest boy hands her a magazine. She hands him back the magazine and tells him it's from May of 2007. He apologizes and tells her he will go to the news stand outside to get her another one. He wants out, but buddy there are no news stands outside. Kinda of cool to listen to the stories. There mother looks tired and worn out but she is happy to have her kids with her.
My name is being called. It's time for me to get herded with the rest of my cancer posse to the next room....to wait.
To Be Continue for another day.
Sunday, October 18, 2009
I have been sitting here in my home all morning thinking of all those who are presently participating in the race today for me and the Shook family. Upon doctor's strict orders I was unable to attend "The 2nd Annual Miles of Smiles 5K and Walk for Carcinoid Cancer" but my heart and spirit is there. With all the quietness in a usually zoo of a home, I am able to think about each of my running angels (R4R) and the sacrifices that have made in the past few months to organize this event. Each and everyone of them have families, jobs, and other stresses in your life yet they found the time to give of themselves. I feel so privilege to be part of your group as well as blessed with your generosity. A year and a half ago I would of had trouble finding more then a handful of people in our community that could pronounce Carcinoid let alone know what it was. Because of my running angels the awareness to this rare form of cancer Carcinoid Cancer is the talk of not only Plum Borough but the whole Pittsburgh area. That alone will not only help extend my life or Scott Shook's life, but several hundred others.
I also need to show my appreciation for all those who have come to support me. Mark called me a few minutes ago and started naming those who were sending their love to me. I must say the strong side of me turned to mush. I sometimes wonder why I am so blessed? I have such an amazing support group and I don't know if I am even worthy of that. However, what I do know it is that each and everyone of you are the reason I am not giving up on my battle. You have all played a part in me being alive for my boys by inspiring me to keep going. When you run dedication hill in the below freezing weather today know that I will be running a similar hill with you in my battle. Also, when you cross that finish line please know that you have inspired me to cross my finish line with a victory over this cancer.
I hope you all know the passion that goes behind the two small words, Thank You, when I say them. I wish I could find a new way to express it, but I hope my action will let you all know the true meaning. I've said this before but still it comes from the heart you make it impossible for me to give up.
And to my running posse, I know you like to call yourselves R4R but you will always be known to me as my "Running Angels". Thank you for spreading your wings and carrying me. We are not just a group a friends we are a R4R family. Of course Joe as our Papa and each of us playing our brother and sister role. All nine of you and your families will always have a special place in my heart.
Saturday, October 10, 2009
I heard this quote from my friend Debbie. She is a mother of a three year old little girl that is not just a toddler but a cancer survivor. Although, I knew her story when her family was fighting this battle I did not know her personally. When I had my relapse Debbie reached out to me. We connected immediately. When I heard this quote from her I knew exactly why we connected. She has taken the most unimaginable situation and polished it. She has seen the "Good in Cancer". Her daughter is the light of so many worlds. This three year old little girl has beat all odds and is truly an inspiration to so many. Especially me. She is God's gift.
So many of us go through trails and it is nearly impossible to find the bright side of life. I have been there too. That is when it is time for us to start making the best out of a bad situation. I have realized when you do that you can polish a beautiful gem of a life. And once a dull dirty gem is bright it is priceless. Much like Debbie's daughter Ella. I am asked many times how I don't just give up. The only way I can answer that is, "if I quit then I will miss all the good that is to come."
Let's all polish the dull side of our difficulties this week. I think if we do that we will see that it may just become the bright side again. I know that it has worked for me.
Thursday, October 8, 2009
Today a stranger went into my doctor's office and left me a gift. I want that person to know that it meant more to me and my family then he could ever imagine. I don't know your name or even if you want me to know, but I want to tell you that your thoughtfulness has made a difference. Thank you from the bottom of my heart. I always say I wish there was a better way to say it then those two simple words.
"To give to others and then not feel that you have given is truly the best gift of all".
Tuesday, October 6, 2009
When I got home I had an email from Dr. Friedland. He had already checked my scans and informed me that Dr. MGough, a orthopedic oncologist, will be calling me immediately to talk to me. I could tell in the tone of the email that things were not good. However, I think I knew that already when I saw tears in the tech's eyes when she finally freed me from the tube. After talking to Dr. MGough's office, not Dr. MGough, I decided to put all this news aside and wait until my appointment Monday morning, as soon as I can get there. The weekend was great because I knew that Monday was coming quick with a not so positive experience so I savored every minute with Mark and the boys. That's the "Good in Cancer", you sometimes have the advantage of knowing that the days to come are going to be tough so you can appreciate the simple times before hand.
Yesterday came and the news was just what we prepared for. The cancer has spread more in the right leg and moved to the left leg. The scans showed that my bones in the right leg are becoming unstable and brittle. Not as bad as the doctor would of thought with the amount of tumors that have grown but still a concern. I guess being forced to drink milk as a child finally paid off a bit. So with that he gave me two alternatives....neither sound like a party. Both options are serious enough to rightfully obtain a second opinion. But as of now this is what I have:
1. The first option will be to have a surgery that will stabilize the bone. The doctor will insert a medal rod in the femur bone. While in there he will try to reduce some of the tumors depending on the mass of the tumor. I will then start immediate radiation. Their are several risks for this surgery for me. One main risk being that the fatty acids that fill the bone will be released in fill the lung. I only having one lung would be at a risk of death if this happens. However if this bone breaks I could risk death as well.
2. The second option is to do radiation first to take care of the pain then do the surgery to stabilize the bone. Their are several risk to that as well. The main risk is that the radiation does not work and the bone becomes weaker.
I did schedule the surgery for the end of October even though the doctor wanted sooner. I really just need to think about this all and get a second opinion. Of course I would not do any of this without hours of research.
Nevertheless, I will keep my faith. I am determined to do whatever it takes to be here as long as I can.
Friday, October 2, 2009
It is Dr. Friedland's assumption the the cancer has spread pretty quickly in my right leg bones. He wanted to send me immediately to radiation therapy but I panicked. For many reason I am terrified of direct radiation. I need to do some research before I do anything and fifteen minutes is not quite enough time to prepare myself. So he decided to give me an MRI and confirm what we all know is going on. It is Dr. Friedland's style to put the patient at ease before he puts them through hell. In all seriousness, he really does try to make you feel good about every decision of treatment. After waiting an hour for the poor nurse to call every hospital in the UPMC umbrella we were unable to find an available MRI machine asap. So we decided to cancel the radiation that was schedule and go home. Today I will be getting my 90 minute MRI and Monday if the results show necessary I will get my first treatment of direct radiation.
I was actually thanking God that there were no MRI's available at the time because I was so overwhelmed, not to mention Mark was on the verge of taking a bridge. I always try to clarify that I truly believe it is harder for the loves ones of a cancer patient then it is for the patient themselves. I still believe that with all my heart, but yesterday I was being selfish. I was so angry that he was frustrated. I felt such a helplessness and complete loss of control. He was upset that our appointment was at 9:30 and we were not seen until 11:30.....pissed off that I would not sit in a wheelchair and then when I finally gave into the wheelchair complaining that the handle was to low for him to push it....frustrated with the whole hospital monopoly because we waited an hour and still had no MRI done......annoyed that his phone was ringing continuously with client calls and he can not pick them up to make some money and then completely angry at me because I insisted on going to Austen's open house last night even after the doctor suggested I just stay in bed and rest. If you know me I refuse to miss my kids important activities if there is anyway possible I can make it. If I had to crawl I would of been there because Austen made it clear that it was important for him that I don't let Dad go alone. When we got home all hell broke loose when Logan decided to tell us, with his "I don't care attitude", that he forgot a book he needed to study with for a test he had today. I thought at that moment Mark was just going to blow his lid.
This is just a small example of what cancer can do to a family. In just one day it can completely put your home in shambles. The cancer tsunami. In a insistent this monster can rip all sense of hope and happiness..... if you decide to let it take over. Cancer can take a happy, go lucky, jolly man and turn him into a panicked stranger.....if you decide to let it take over. It can take three respectful, amazing, smart, straight A children and turn them into a walking mess......if you decide to let it take over. However, I am not going to let it take over. I am not going to let my family fall apart. My boys will not feel guilt about their mom being sick even when they make a mistake. I refuse to let this monster win.
This week I have been tested. I have had some quiet meltdowns were the tears fell. I had some times anger - at the cancer, at the doctors, at the nurses, at myself, and at my husband. I had a time of frustration that I am unable to do what a mother is suppose to do. All the things I complained about for years before hit with the cancer card.....cleaning, laundry, taxing and helping with homework. I even had a time of envy at Mark because he is starting to get the hang of being both a mom and a dad. But, what I refuse to have is a time where I loose hope because that is when this disease has won.
We have hit a road bump which will slow me down a bit, but I promise you it will not become a road block. I will get through this and I will help Mark get through this too. We are resilient and will not let this beast take over our family spirit. However, we know that we can not do any of this fight without God.
I will fill you in on the results soon.
P.S. On October 18th my running angels R4R will be holding a 5k and 1 mile walk. The proceeds will be going not only to my battle but to another family in Guthrie, Iowa. Through my blog I have had the pleasure of corresponding with this family. Please read to the right of this page the article written in the Advance Leader on September 24th for more details.
Thursday, September 24, 2009
Dr. Richard E. Raizman, of Ligonier, passed away early Tuesday morning, Sept. 22, 2009, after a long and valiant battle with cancer. Dr. Raizman, a gastroenterologist, loved his work and his patients. He loved his family, his daughter, Dr. Emma J. Raizman; his son, Dr. Noah M. Raizman and his wife of 42 years, Dorothy L. Raizman, all of whom were with him at home when he died. Many knew he was never still, always looking for new challenges. He traveled to Bhutan to trek and to India to volunteer his medical knowledge to treat Tibetan refugees in Daram Sala, forming a deep friendship with Dr. Setan Sadutchan, the Dalai Llama's personal physician. On one of his many trips there, he took his children to work with these wonderful people. A graduate of Columbia University and the University of Pittsburgh School of Medicine, he felt strongly that a good life was made better by sharing. He established a scholarship at the medical school, as well as funding a vaccine research laboratory. On his death from neuroendocrine cancer he completes the funding of a neuroendocrine cancer research center that he hoped would help others fight the disease that took his life. He was a member of the Board of Friends of the University of Pittsburgh Medical School, an honor he cherished, as well as being a clinical professor of medicine who taught surgical residents the art of endoscopy. He was an innovator. Along with his friend, Dr. Frank Costa, he developed one of the first out-patient surgical centers in Western Pennsylvania. He was both a polo player and fox hunter. As captain of the Ligonier polo team he created "Polo for the Cure", which over the last 17 years generated more than one million dollars for the Leukemia and Lymphoma Society of Western Pennsylvania. He was named a Master of Foxhounds of the Rolling Rock Hunt, where he had been a member since 1983. He rode to the hunt with his friends, Fritz Teroerde, Dr. John Frazier and Wil Burkland. He is survived by his wife and children as well as his beloved brother, David Seth Raizman, PhD., Head of the Art History Department at Drexel University.
Then on October 1st I will receive my first IV dose of a bone medicine to help strengthen and reverse the damage the cancer is doing to them. I am told the side effects are minimum but once again there is no precedent for carcinoid patients so we will wait and see. I joked with my doc at the last appointment, but really deep down meant it, that all this first ever I am experiencing better be written down in some journal so that no other carcinoid patient has to wait and see how they react. I'll bite the bullet for the rest but it is my doctors obligation to spread the word.
Off my soap box so that I can continue. I had planned or hoped I should say, that I would have my trip to Switzerland in November but because of my blood counts that is not possible. So I am looking at another January in Basel. I am anxious to get it done however, I am told that there is a fine window as to when the best time is for my body. If I go to early it will not work, if I wait to long though it will be to late. So I am just praying God let's me know when and then Dr. Mueller okays it fast. All I can do it stay on top of it and let God do the rest.
In the meantime, I am planning a trip to New York City to see the grandfather of Carcinoid Cancer, Dr. Richard Warren. Hoping that he tells me that I am going down the right road or leads me down the right road if I am lost.
Later in the future if none of these efforts work then we are going to be forced to try massive amounts of chemo. Which has not been to successful but it's all worth the try.
I have not given up hope. Since last may, Afinator has been approved and other meds are being tested. I just need to hold on until that magic cure comes.
Saturday, September 19, 2009
You are my sonshine,
Friday, September 18, 2009
On Friday Sept. 11 I received an email letting me know that one of my Carcinoid Posses had passed away. David Lemmink was a father of four, a husband and son. I started corresponding with his family a few months ago when he was preparing to make the trip to Switzerland for his first treatment. Through email and some phone calls I got to know his wife and mother. David did make one trip to Switzerland but unfortunately did not recover enough to make the second trip. He fought with all he had. He did whatever it took to be here for his children and wife Connie. Below is the post his wife wrote on her blog:
Today I post with a heavy heart. David is gone and he is finally pain free. We are so happy for him but mourn his loss. Charlie, Angela, Elisabeth, John and I, along with his whole family, feel his loss deeply.
The last 17 months have been difficult. David stoically fought his battle with beauty and grace and we are so proud of him.
Maybe someday I will be able to post about the months of August and September. Right now, this is all I have. I am sorry not to be able to do more. It is just too painful, but I am sure you will understand.
Thank you all for your loving, ongoing support. We are uplifted by the love of those around us. God truly is good to bring so many loving people into our lives who care for us so beautifully.
With all my love,
Reading this post is why I am rededicated to make a difference for Carcinoid Patients. From what my doctors are telling me, and telling all Carcinoid Cancer patients, my husband will be writing a post like this one day. My children's names will be listed as loved ones left behind. Raising money is extremely helpful for all of us patients but raising awareness is helpful for us and future patients.
After reading my post today some of you will cry for Connie and her family, some will say a pray for them and others will think about them for the rest of the day.....she thanks you for that. However, you will finish your work and chores for the day, lay your head down at night and wake up tomorrow to start your day over again. Connie and her children's life will never be the same.
I promise you my next post will be all about butterflies and sunshine, but it would be unjust of me if I don't give my blog readers reality once in a while. And reality is this cancer has no cure and eventually takes every one's life.
Please read Marks post below. It is one I really wanted to get out.
Thursday, September 17, 2009
Wednesday, September 9, 2009
If you don't want to play come and enjoy all the other activities we have planned. We have games, music, a huge Chinese auction, and a kid zone with bounce house. Prizes for both games and winners of the tournament. We will also have a silent auction with big ticket items. Come and enjoy the Steelers' Day Off with friends and family.
Take a look at the photos to the right of last years event.
I hope to see everyone.
Sunday, September 6, 2009
This is what I am noticing lately. I am finding ways to get relief because I have learned to adjust my life so that cancer does not beat me everyday. Since the boys went back to school it's been particularly hard to handle having this disease. I took a break from my extensive treatments this summer so I can spend quality time with my boys and now it's time to get back to work to fight this horrible attacker that is trying to knock me down. So this week my oncologist and I did our fall game plan to fight full force. Even though my blood levels are not where Dr. Friedland would like them to be I heavily persuading him to okay me to start the Afinator this week. He has agreed to do so if I promise him to be monitored on a weekly basis and agree to stop the meds if my levels do not go up soon. I will be starting the "Golden Drug" tomorrow and I have faith that this may be the answer. We are not sure of all the side effects because Afinator was just approved in May for renal cancer, not carcinoid, but I will deal with them when they come. I am also scheduled tomorrow for a few heart test because Carcinoid has a tendency to damage the heart and I have been having some pain in the chest. I blame it on the kids starting school and the stress of getting back into the ring with cancer. I have a good feeling that the tests will come back okay. Our game plan continues but I don't want to bore anyone with the details because who knows what curve balls this cancer will through me and then the game plan will need to be rewritten.
The purpose of posting today was not just for updates but was to express what I have learned this past week. In the midst of all the crazy planning for the amazing Wiffle Ball event that will be happening this Sunday and with the meetings for the 5k event on Oct. 18th, I have been able to reminisce about my life just one year ago. I thought about how much anxiety and emptiness I felt back then even with all the love I was receiving. I remember the exact moment I realized that I needed to let it all go and just have faith that it is God's plan. At that moment my battle changed from hopelessness to believing. Believing that what ever happens to me I am blessed to no end. This was my cancer turning point and I decided to enjoy my life and to fight to extended it. I made up my mind then that this evil will not take over the time I have left. This is when I photographed the famous "Believe" photo of me and the boys in the sunset. That photo and that moment has change my life and my journey.
Although at times my faith may teeter a little I have never lost it completely. It is not just having faith that the cancer will one day be miraculously gone. However, I will take that and do believe it could happen. It's the faith that God will always be by my side during these times of strife. It's believing that I can do any type of risky treatment and the outcome will be what it is suppose to be because He has a hand in it. It's having peace that my children will be taken care of if I am here or if the day is to come. I have faith that my family is there when I need them or my friends will come when I call. It's believing that I can do the impossible if I have faith that God will lead me to do that. The other day Mark said to me in his joking manner, "you think there is nothing you can't do. You are so full of yourself." In all fairness to him I think I told him I could do his job better then him or something like that. I don't always choose the best ways to movitate him. However, if someone said that to me I would not be joking with an answer back. Mark has a way to just shrug my craziness for perfection off with a good sense a humor. I guess that is why we make a good match. At the time of his comment I laughed and shook my head yes but later that night I realized that it's not me that can do anything....it's God. That is what I think. If you believe that, then you should never worry.
At the end of every service at Unity Church in Plum, Pa, Pastor Frank always says, "You go no place by accident. Where every you are God is sending you." I like to take that further and say, "Whatever you go through God is right beside you. It's never an accident".
Monday, August 31, 2009
Thursday, August 27, 2009
It became a bitter sweet day for me. On one hand I was so sad to see my babies leave on that school bus. I love the summer with them. Especially now that they are older and the days consist of more fun then work. I was determined to make this summer all about our family. I only had mild treatments so that I was not to ill to do all the fun events I had planned. My doctors were not to happy about this but for a few months I decided to choose quality of life over quantity. When I was under the weather I just kept telling myself, "it's for them... SUCK IT UP!". I also made it my mission to have my boys become closer then ever to each other. I know that they wanted some separation at times, which I gave them once in awhile, but as a mother I know that soon they will need each other. So I made them have fun together. Yes made them!!!! There were times when play dates were cut short or we missed a few picnics. I am sorry for that, but this summer I had to make about just the five of us. We slowed down on sports and still were running 5 to 6 days a week with that. We only did a few camps. We did not renew our pool membership. We just hung together.
I also found ways to back off and have Mark do some of the parenting. He was all for that, but it drove me crazy to lose that control at times. However, I noticed by the end of the summer the boys where going to him more often for help, rides, schedules or questions. It has always been that they would walk right by him to find me to ask were something was, for food or drink, ride to a friends or practice, or just to talk. I use to think that Mark was just invisible to them and only could be seen when it's time for fun or of course money. Actually, that would work for me at times too. Of course I'm joking. I don't want the lecture from him that he did not like that comment on the blog....blah, blah, blah.
I am hoping that they had a great summer despite what they are going through. I know that is why it was hard this year to see them off to school. It feels safe to me, and them, when we are together. Some may say I am being greedy, but I wish I could just keep them by me forever.
On the other hand, I feel a sense of relief and accomplishment. Relief that they are now a year older and I am still here. Still here to teach them and be with them. I have this urgent need to teach them everything they need to know to be a great asset to society. Things that I would once say, "I'll let go until later" are now important. I know that later is now today. I try hard to be subtle about it but they know that I put them on a fastpass to acceptable behavior and believe in yourself. It's not about having them grow up quickly or anything, it's about teaching them all I need to before it's to late. Teaching them how to love each other unconditional, how to look on the bright side of life, how to treat others with respect, how to respect yourself. I try to instill faith in God, faith in yourself, faith in your family and faith in those around you. I am determined to have them be the best they can be and follow their dreams despite the difficult ride they are currently on. Sometimes they tell me to stop preaching or lecturing so I lay back a little. But usually they are listening and watching. Watching because I believe my example of living is far more potent then any speech I can give them.
I felt accomplished because they seem to be understanding more what life is all about. Sure they still have lists of what they want. But on the top of the list now instead of PS3 games or sports equipment there are things like: more time with my dad...my mom to get healthy....my neighbor to have you foot feel better.....more time with my grandmother or their uncle. Things that you can not buy. Things that make a difference in living a full life.
They did fine and I cried for a little bit. Isn't that what life is all about. I feel so blessed I am able to see them go to the first day of school one more year.