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
Sunday, November 4, 2012
After weeks of increased swelling in her legs, and of fighting various different blood count issues, we were sitting on the couch Wednesday afternoon before the kids came home and the conversation steered around the last supper and communion. In fact she asked me to text our Pastor and ask him to come over on Thursday and share communion at the house. It strikes me now how either one can say it was incredibly ironic that this would be the subject of our last true heart to heart conversation at home or one could say it was reaffirming assurance that God's hand writes every chapter of our life and we just need to be faithful enough to read the directions he gives each of us in individually unique ways. Sunny had never asked for communion at home, but by asking for it, and although ultimately we never had the opportunity, but by asking for it, God was definitely preparing her heart and soul for the next 72 hours.
When we went got the call from her doctor at 4:30 Wednesday afternoon we had just had dinner dropped off, in fact Aunt Joan was still there....I was getting ready to drive Austen to an away hoop game, and Lisa was coming to sit with Sunny to keep her company, and to help get off the couch....etc...The doctor said her blood sugar was high, she needed to come , not a rush , before midnight, get some fluids, some insulin, and then could go home Thursday afternoon. It was stressful in a way, but this didn't seem like the beginning of the last short chapter of her life here on this earth. We didn't get to go home Thursday but her count had improved from 486 to 261 and we were almost there. After spending the night and day when I ran home to shower leaving her in the good hands of her sister Lynn, it was another hectic night at the Carney house. Grandma was in charge of helping our two younger boys make salsa for class, Lisa had dropped off the ingredients, we couldn't find the processor, garbage had to go out, the dog needed fed, just another typical frantic evening at home...it felt normal...Sunny called a couple of times to offer input and give advice, since this was her salsa recipe, and she had to make sure it was done right, so her kids wouldn't be disappointed. She was coming home on Friday they told us..and we told the boys.
After getting back around 8:30 on Thursday it was still pretty normal. Sunny was lucid, we got her up and walked around the floor and the hall for a bit...we talked about the about grades, about Austen's practice, about Nolan's guitar lesson that night, and Logan's salsa-making skills...We waited for a new mattress that was going to be changed at 10 that night per doctors orders...At eleven fifteen when the mattress was taken care of she put the nurse in his place when he complained about having to switch it and how they were shortstaffed so he hoped she liked it and wouldn't need it switched back....I will say in an aside that other than this one experience the care during this short chapter was remarkable...it went beyond anything that was expected....there was care given with smiles that 5 star hotels would be envious of...maybe this was Sunny's one last chance to share wisdom...about priorities...because this nurse got the "I've got weeks to go fighting before I die and you are worried about changing a mattress". In retrospect it was the final Sunny smackdown but it really had a message behind her words. Don't sweat the small stuff. Don't bitch about
things that aren't going to matter in the bigger scheme of things.
Things changed dramatically after midnight. Her counts doubled. Of course as she dozed off, in and out of it, I thought it was the meds. At 9:15 Friday morning as Dr. Friedland asked me to step out into the hall to speak, as tears formed in his eyes, as he started to tell me that things were progressing, as he hit me with have you and Sunny discussed living will? I think I did my best Gilligan impression and answered back to the Skipper, with hands up "Uh..so we aren't going home today? And then I am pretty sure my head did the Exorcist spin several times. We talked and he said he wanted to tell me this personally since he was off over the weekend. My head spun a few more times as I asked him "So it can't wait to Monday when we come in for her treatment? It finally sunk in. He shared how inpsired he had been watching Sunny fight and having the opportunity to help her over the past four years and how his own mother had passed away from cancer at 53...and we shared a moment. It was surreal. There was all of the buzz of the 7 Main floor around us, but I was oblivious. I went back in and before I started the phone and text chain to family and friends I sat and held her hand....stroking and sobbing, sharing words of encouragement and praying....she squeezed back and I think she was letting me know it would all be OK. I love her so much. And this is the hardest thing I ever put to paper but if I have to stop ten more times and come back I promise you Sunshine that I will finish this last short chapter for you.
She got one more ultrasound of the stomach to see if there was one last straw...a blockage...maybe the bilirubin was blocked and they could buy some more time...when she came back the room the love began to pour out. Sisters, in-laws, out-laws, nephews, Mom, friends from the old home in Greenfield and the new home in Plum...and most importantly...Austen, Logan, and Nolan. The 7th Floor Main Family Lounge, the hallway outside room 714, and the area by the elevators were filled with those who came not to pay respects, but to encourage, to talk with her through grips and nods, to cry to laugh and to pray. It was an unbelievable outpouring of love that I know meant a lot to me and I know Sunny was able to hear every word, feel every swab of water, soak in the skin lotion, and share in the love. Seeing my sons go in numerous times on their own, by themselves with their mom, having that chance to be with their mom as hard as it was for them to see her like that, having them return time after time to be by her side, it was hard, but they knew their mom was fighting, and listening....and they surely had to feel her love through the squeezes. Boys I am Damn proud of you. The gathering was a small crowd, her nurse said they had never seen anything like it....I said thats been said a lot about Sunny over the past ten years.
Everyone began to trickle out and by 1:00 as my parents and brother went to leave, her nurse said she was going to send the doctor in because they were having trouble keeping her pulse steady. I remember it was 60 over 32. Her breathing was laboring. Her heart was slowing. He explained me to that the
meds were not working to keep the pulse going. They were concerned she might be starting to have a lot of pain. They asked me what did Sunny and I decide was more important....continuing to try to pick up the pulse with no guarranty of results or focus on pain relief. When you discuss this stuff on a couch at home, or in a car on the way to a treatment, when you pray about together numerously it all seems so clear and easy. When you have to say "her wish was not to have to suffer at the end or to have anyone see her suffer" it sucks. Real life is a lot harder than dry rehearsals and hypotheticals. It was 1:30. Saturday morning. Just over 24 hours removed from watching her put the nurse in his place , standing on her two feet in the hall. I kept thinking how is this possible? What the hell was going on? This can't be real? This is way too fast and it must be a dream. Going back now to where I was able to hold her hand for the last two hours. My parents and brother stayed, giving me space and alone time by waiting out in the lounge. Thank you. Right before her sister Sheila arrived I was holding her hand talking about the boys and their love, telling her how proud I have been to accompany her on this incredible journey, how it was the like the band on the Titanic, when the one musician turns and says how it was an honor to have played with you tonight gentlemen...I told her how priviliged and honored I was that God gave me the chance to fight with her. I told her it was OK to stop fighting on our account...that heaven or Jesus was waiting...and she squeezed my hand as hard as it had been squeezed all day....and gave me a thumbs up. Those that say there is no God and those that may question why just have to realize that he is in charge...and that Sunny had been given the chance to have the closure she wanted for us. For her boys. That one gesture, the thumbs up around 3:00 showed me that she was there for it all, and was ready. And soon after she answered the call. Heaven's gain is this world's loss. Sunny I love you and I will hurt and miss you but I know you are no longer in pain....and I know how you lived and fought and even though the years before and after the dash may not be far apart, you lived more in 42 years than most will do in twice that amount of time. Thank you for being you. Thank you for raising our boys the way you did. Thank you for inspiring all of us who had knew you and loved you. Thank you for leaving those CONCRETE FOOTPRINTS behind.
Those footprints came through this morning when the boys ran the race for their mother this and
then spoke their thoughts to everyone. Their courage and strength is your legacy....your footprint...three of them...forged by the love their mother gave them....and molded by the inspiring way you lived each day. They are footsteps of not just concrete, but rebar enforced concrete. GOD walks with them. They will carry on the legacy and be a lasting testament to how you chose to life.
I love you. I love you. I love you. Thanks again for all of the wonderful memories and time spent together.
Saturday, October 27, 2012
Friday, October 19, 2012
Enough medical stuff. I don't want to sound horrible to all you who love me but I can't go into all the medical things right now. I need loved and loved. Please respect my family and just love us. Please don't hit me for a few days with medical questions. We don't know our medical choice of action. We are looking, so asking us what we are going to do medically will only frustrate us. I do know that I'm not quitting and will be on some chemo. My answer until Tuesday is pray for a miracle that a new treatment will pop up.
Now what is on my mind. I was talking to a friend, actually crying with a friend. I love that a friend can feel so much love for you that they cry with you. Anyways she said to me, "Sunny you have your footprints all over the world." I asked her what she meant and she answered that I have made a difference. I thought ok everyone does, that's why we are here. That's why God gave us to the world, Right? She asked me to write about that.
So here I am trying to put that in words. What does it mean to leave footprints? NOT FOOTPRINTS IN SAND, BUT FOOTPRINTS IN CONCRETE. We always see those beautiful beach pictures of with footprints in them. In fact i think I've taken a few. That's the first thing that came to my mind when she said I left footprints for everyone. My book, my blog, my actions, my words and everything. Then I thought of my boys and said that's what I hope I did, left some sand footprints for them to have. But I remember those footprints make a pretty picture but as soon as the water splashes up they are washed away clean. I don't want all the footprints that I worked to hard to make get washed away by a wave. That wave to me is a symbol of hard times. I want to leave FOOTPRINTS IN CONCRETE. I WANT MY BOYS TO BE ABLE TO FEEL MY FOOTPRINTS ON THEIR HEARTS. I want to leave my footprints for everyone. My brother said something like he cant go on with out my big smile when times are hard and nothings going to be the same. Well he's right. It can't be the same when someone whose been there is not there, but my footprints hopefully made it better. Of course this is all figurative but I mean my words and actions.
What am I talking about footprints? I am talking about what I have done during this cancer journey to make this world a better place. I hope I have first taught my boys the beginning of manhood. I hope I taught them how to love the world, fight during hard times, love during non-loving times and laugh during sad times. I hope I have showed that giving up is not an option when thinks look hopeless. I hope that during those hopeless times step back, let go of the wheel and let Jesus drive. Actually I hope I have taught many people these things. Thank God I have not given up because how different my boys life would be. I was determined to not give in and at times I thought I could not go on. I would then close my eyes and look for my concrete footprints. Then if there is not enough I knew it was time to tie those boots up and make more footprints. I am told that I am leaving footprints for others and I feel so humbled by that because I am just doing what I would normal do....fight like hell with dignity and faith. I realize that my faith is my footprints. My footprints are how my journey is with God. So He has been given my the strength to get off the sand and step in the concrete. I am making the footprints in concrete with him. He is given me the strength to push down and then He pulls me out leaving behind my actions, words, faith and inspiration.....MY FOOTPRINT. It's all through Him. How blessed I am to be able to do that through my cancer journey. I want to stress I am not giving up. We are still looking for option and right now I will start some kind of Chemo. But I am also finding my peace too.
My question to you all is where are you leaving your footprints? Take my journey the last 4 1/2 years and continue. Leave some footprints for me. Continue this journey. We all have our cancers and if you think you don't trust me one day it'll come. Please know this is not a letter of goodbye. This is a blog of inspiration. Please don't give up in your life. Show others that life is awesome if you choose to see it. I feel so blessed that I had this journey. But I am not done unless God is telling me. My boys, Mark and my family are my focus now. Of course I am still looking for that miracle treatment. I am asking all my carcinoid posse to please email me your new treatments. We need to work together. I need your advice my carcinoid friends..
To all my friends and warriors please cry with me. Don't close me out and lets have fun. I love you all. Sunday is a big day withe the fifth annual Wiffle Ball tournament for carcinoid cancer. Please show up and love me. Please start making your footprints.
Love you all,
Monday, October 15, 2012
Needing some extra prayers my friends. Love you all.
Don't forget to register for the Wiffle Ball tournament. Praying I don't miss it.
Friday, October 12, 2012
First and most importantly the Fifth Annual Wiffle Ball tournament is October 21st. Please register your team. You can pay at the door. Don't forget all ages can play. Everyone is put into its age bracket. There is nothing better then to see a 65 yr old grandpa play with their 8 yr old grandson. Registering your team guarantees a great spot. You can pay that morning at door but it's important to register. You can do that above. All are welcomed though. There is beer donated by Miller, food donated by Shop n Save and DJ Lou. The fun part is the dancing and kids zone. I cant help to mention Plum's biggest Chinese auction and amazing silent auction. We have some awesome sports memorabilia this year. Several signed items and tickets. So come to watch, eat and dance. It's all about the positive of cancer. Yes there is some good in cancer; come and see.
As mentioned I usually blog about the amazing days I have in spite of cancer. The last few months I missed blogging about some pretty big milestones. Let me explain why. In June we did scans and found out that the cancer is spreading. I started radiation the first week of July and it dropped my immune system and my blood levels. But Dr. Freidland, Dr. Liu and I still felt that time was wasting and cancer was growing quickly that we needed to take the risk and start the new chemotherapy cycle of IV, and 2 drugs. We knew this was a risk. It is a very very strong treatment but we all felt we could not wait any longer. So after my radiation I immediately started the chemo. I did okay but it started to knock me out. Then it all started falling apart. And just lifting my head was to hard so I had to save my energy to get through the event, blogging was out of the question. After three rounds of the chemotherapy cycles (14 days on 14 dates off) I got a bad case of the shingles and internal fungal infection together. That's what I'm fighting now. Just getting through day to day was tough. Boys needed to get ready for back to school and all their sports started. Mark was swimming with the sharks and trying to keep his head above water. But we had so much help and support from my family and friends. It was like big strong hugs.
I'm now dealing with some blood level issues that is effecting my heart. This week we got some scary news and we will found out more next week what is actually going on. However, I have been so blessed with an outpouring of love and help. I'm fighting hard and will never give in to this cancer. I want to start the chemotherapy cycle soon but I just can't get strong enough. So please please continue to pray. Last years theme for the Wiffle Ball tournament was "We're going to love you though it". I have to say I am totally loved through it. God has been with me through it all and he has given me the most amazing family, friends, and support system. Enjoy the song above.
Friday, August 31, 2012
Monday morning , their first day she struggled , it was painful, I was actually in charge of breakfast(a three course meal of Fruit Bars, Cold Cereal, and slightly burnt toast...with a shot of Mountain Dew) but she fought through the pain to get the annual pictures. Not at the bus stop this time...but who cares. By Tuesday she was back in charge of breakfast, reviewing homework, and helping to make sure clothes matched and were the right kids gear. The same for Wednesday. Thursday added a new wrinkle. She made three brown bag lunches, each one customized for each boy. Apparently as some of you may heard or seen on the news, Michele O'Bama's new First Lady Frankfurter lunches are not quite the big hit in Plum, and for the first time in 10 years (besides field trips) she did three MTO(thats made to order in SHeetzSpeak) lunches. Wow. She reviewed homework. She struggled the whole time. Didn't complain ,but the pain sometimes visible in her usually sparkling beautiful green eyes.
Which brings us back to today. 8/31/2012. Sunny's big day. She got up , made the toast for each kid just the right shade, each of my boys shared gentle big hugs with her and then gave them her daily sendoff words..."make good choices today". She went back to rest. The pain is there. Tumors, swelling, shingles, I don't think Elvis had enough pills to ease her pain. Its hard for her to figure out what is causing what to hurt sometimes but that doesn't slow her desire to be a daily part of the "normal" Carney family house.
Which brings me back to the title of today's blog. And the purpose of today's blog. I went and reread one of our favorite scriptures from Roman's 5. But from a different translation. Paul's words are ones that we have chosen to try to live by...."We are joyful when we suffer. We know that pain produces courage. Our courage produces character. Character produces hope. And hope NEVER disappoints us. God has filled our hearts with HIS love."(vs2-5) I highlight NEVER and HIS because I think these are the two absolutes that keep us going, and I know keep Sunny able to fight. God will NEVER let us down. Now, he will do things in his own way and on his own schedule but he will NEVER disappoint. For those that have the faith, the faith that Jesus died for us and freed us from our sins, we can have the hope of what that means. Eternal life with him in heaven. HIS love, like him is an absolute, its perfect. We are commanded to Love one another like HE loves us. Even in all the daily crap that cancer hurls at Sunny, she is going to do the best on that day to Love like HE loves. Its quite frankly why ,no offense meant, but you can take Andrew McCuthceon, Sid Crosby, Big Ben, or any other type of supposed "hero"...I will keep my hero...You don't how cool it is to be able to say "I married my hero".
Happy birthday sweetheart. You are the embodiment of love, and that gives me the hope that each day will be special, while constantly having faith that this too shall pass.
Sunday, August 26, 2012
As you can guess I'm climbing another mountain. I have to say this is a tough one too. Since Wednesday I have had horrific pain across my chest, across my upper back and down the left side of my body. I'm always in bad pain, but the last few days has been beyond what I have ever had. Plus I had my normal leg and spine pain to add to it. I saw my oncologist on Wednesday, he checked me out and thought it could be the cancer spreading possibly to some lymph nodes. With the swelling of my legs and feet it makes perfect sense. He upped my pain meds and told me to keep taking the chemo. Well the next days the pain got worse and worse. I could not even take a breath. Then Sunday at 1:30 A.M. my skin started to burn. I look at where the burning is coming from and saw the most nastiest rash and bubbling blisters ever. I was half asleep so wasn't sure what I was looking at so of course I wake Mark up screaming. He calms me down and I decide to wait a few hours until the boys are able to get up to and we call my doctor. By 6:30 Sunday morning we were on way to the ER.
One look at the rash and seeing my pain the doctor knew it was Shingles. Apparently the chemo and radiation, which has totally taken over my blood counts, and some stress Mark and I are under right now caused this to outbreak. The ER doctor was wonderful and he gave me some IV pain meds which I think did nothing. He tells me that he wants to admit me for IV antibiotics and a rest from stress. After much begging I convinced him I'm better at home with oral antibiotics and a nurse checking on me. Monday is the first day of school for the boys and I have never missed that day and don't plan to until I'm no longer here. I did promise I would come straight over if I can't handle anything.
I don't know what size of mountain I'm in for climbing but from what the ER doc said for cancer patients this is a long painful hike and the chance of further complications are high, he gave me some % but i choose not to remember. Mark got that info. I'm asking you all for prayers please. I can't do this climb without prayers. Sometimes I'm just too overwhelmed in pain and sickness that it's to hard to even talk to God. So I'm reaching out to you all for a hand up the mountain. I know God is always with me through my battle but He said we need to ask.
I do not fear this however I would love to skip this hike and just take a nice walk on a beach with the sun rising. But that's not in God's plans. I'm hoping that I will make it soon to my beach but for now I'm to be mountain climbing.
"Never measure the height of mountain until you reached the top. Then you will see how low it really was".
Tuesday, August 7, 2012
When I got to the funeral home on Friday I didn't think I would cry as hard as I did. I knew that he was suffering at the end and I know he lived a blessed life. So I'm positive he was in heaven, pain free and looking down and shaking his head on all the fuss. But the photos of his life all around the room and a running video just hit me hard. Seeing Jodi and Erin his daughters and Bonnie his wife smiling through their tears made me so angry at cancer. I knew exactly what the last months were like for them. We all need to die one day but why the suffering? Then Saturday at the funeral I looked around the catholic church and there was not an empty seat. Many sniffling and many wiping tears. Even knowing where he is going I still cried for his family missing him.
Later that day I shed tears of love. We went to a beautiful picnic wedding of a young couple. I never cry at weddings. I'm a photographer and photographed tons of weddings. But I guess I was searching some happy moments. As the minister talked about marriage he mentioned bad times like sickness and poorer. I could not help but think how seventeen years ago Mark and I had no idea what that meant. Of course we loved each other, just like the beautiful couple on Saturday, had no idea what in sickness and in health or richer or poorer entailed. This couple said those vows with such conviction, just like Mark and I did our day, and I believe they will be there for each other too. The love was so there you could feel it. Love like that gets you through times that you could never imagine. Just like the love Mr and Mrs Brown had during his battle.
As the minister spoke about commitment I looked over at Mark with my three boys in between and I think how blessed I am. I have commitment from four men. It's not a spoken commitment, it's a shown commitment. It's the commitment of Mark sitting with me at doctor's appointments and flying across the world for me. It's the boys never having to be asked to open the car door for me and helping in and out of the car. It's a commitment of helping me and never feeling embarrassed. I don't think it's a taught thing I think it's just LOVE. That love started the day we said "I Do" . That love is given to God. I could not get through everyday without the four of them showing me their commitment to my battle. I don't shelter them from my cancer. Actually it's impossible to shelter them now. I just feel that lying is only going to make them wonder. I believe that's why the understand.
So of course the tears at the wedding were tears of joy for the couple. But also tears of happiness for my blessings. Life is constantly testing us. We are given obstacles after obstacles that we need to overcome. Without love and commitment from your family it's very hard to get through it. Mostly however without faith in the Lord you defiantly can't get through it.
To end I am asking for extra prayers tomorrow. My blood counts have been dropping with the recent radiation and chemo. Because of that I am having extreme fatigue, chest pains, trouble breathing and swollen legs and feet. So tomorrow I will be having a transfusion. Please pray everything goes well and I start to feel better.
Sunday, July 22, 2012
I know many of you are waiting for my updates from last post. I have to say things have been quite busy in my battle. I will update you quickly because this is just so much going on and this is not the reason for posting, even though I owe you all an update. Monday, July 2nd, I started a six day in a row radiation treatment. Unfortunately, it turned into a few more days because after new scans we realized that the cancer invasion in the spine increased quickly in just 2 weeks since the last set of scans when they set the time schedule. The main purpose of the radiation is to try to relieve some of the pain. I have not notice a tremendous amount of difference but Dr said with carcinoid cancer it may take a few weeks. So I'm trying to keep my hopes up that the pain goes away. I know that pain relief will give me the strength I need to keep fighting.
I also was trying hard to gain some weight and strength so I can start a new chemotherapy treatment that both doctors, Dr. Freidland at Hillman and Dr. Liu at Vanderbilt, agree I need. They wanted me to at least get above 100 lbs. for fear that I may loose more weight while on the strong chemo and lose more strength to fight the cancer. This chemo plain is prestty strong and can take over the body if you are not able to withstand it. However the radiation got me so sick it was very difficult to put that weight on. So when I went to see Dr Freidland on Friday my weight stayed the same. I was thrilled I didn't lose any but a little frustrated that I did not gain because I have been really working hard at it. After consulting with each other both doctors decided I could not wait any longer and needed to start the chemo ASAP anyways. Last Monday morning I started the 14 days on and 14 days off treatment. With an added drug on day 10. Side effects are strong and the first two days I was a little freaked that I may not be strong enough to handle them. So I've been really trying hard to let God take the control of this and let me know when I need to give in. Of course usual symptoms with vomiting and fatigue are the worse. But I also have a lot of swelling in my legs and feet. Dr. Freidland said if the side effects got so bad and I started losing my strength I could stop. The other day, while feeling very sick and discourage, I mentioned what Dr. Friesland said to Mark. In a firm voice which I don't get much of that from him because usually I'm the one that says, "I can do it", he looked hard at me and said, "not an option". I have to admit I'm still a little anger at him for notb respecting when I know my limits. As much as those who love us, especially my Mark, think that they know what we physically go through because they are right next to us - they don't. They know more then anyone else, but they can't imagine what it is like. Also, my Dr said I need to complain more andsb thev one time I do I get to be made like I am a quitter. If I'm hurting or sick I often try to get through it myself. Until it gets unmanageable I normally don't say anything. I usually wait until I really need him. So he thinks I can take more then I can I guess....because I do. I haven't mentioned it since, but I do have a call into doc to see what I need to look for in case my body is breaking down or if I'm just not mentally strong enough to get through this treatment this time.
As I said it'll be a quick update on me physically. I wanted to really post this blog because Mark and I are celebrating our 17th anniversary today. Seventeen years and we've been through more then couple married twice as long. Not just with my cancer but in many things life has thrown our way. Sometimes its not pretty how we get through them but with God's grace we can move mountains and I think in the seventeen years we have. When I look back on that day I never thought in my wildest dreams we would going through this cancer journey. I had my life planned out, like a fool, not realizing that God is the only one that has my life planned. In any case I think our cancer journey has actually strengthen our marriage. We have become vulnerable to each other. I know he has seen me at my possible worse. I think I have seen him hit rock bottom too. I know that this day 17 yrs ago I loved him but it's not the same kind of love we have now. Nowhere near as deep or strong. It's a comfortable love that can't be busted. I wonder if we didn't go through the last few years if it would be this kind of love? I almost hate to even admit this, but I also wonder if the situation was reversed and he was fighting this battle if I'd be as loyal as he? I would hope I would but its got to be so hard to have your whole life and dreams change when the one you love is so sick.
We have both changed so much since that day too. But when Mark looks at me he still thinks I'm beautiful and he looks at me the same as he did back then. I still laugh at his jokes and funny antics but I see a serious side now. I see a man that is scared to lose his wife. I see a man that would switch places with me when I screaming in pain. However as strong as he thinks he may be I don't want him to go through it. Mostly I see a man that's not going to let me quit because he could not imagine me not here. We don't always agree with each other and often have some brawls, but we have an understanding of love. When I think of the vows we took that day I realized we went through them all. For better or worse, been there...for richer and poorer, especially my treatment cost....in sickness and in health, we all know that. I bet those that are reading this that have been married longer are thinking I have no clue what's to come. All I can say to that is, "I hope I'm here to see".
With love, Sunny.
Wednesday, July 4, 2012
On June 11th Mark, my brother Michael, my sister-in-law Vicki, and myself went to Vanderbilt Cancer Center in Nashville to visit with Dr. Eric Liu, a neuroendrocrine carcinoid specialist. He recently opened up a carcinoid center department and is consulting on many cases. I love my oncologist, Dr Freidland, because he is always open to specialists opinion. After some tests and meeting with Dr. Liu's assistant, Cynthia, and then Dr Liu we set out a game plan. Dr. Liu was wonderful and understands I've been through a ton of treatments and surgeries with my battle. In fact he was surprised when he saw me after my last few years that I was actually in great spirits. Whatever he meant by that? He feels my body is weak right now and the treatments need a break. So before we can do any new treatments, which Dr. Liu has some planned, I need to put weight on mainly and get my nutrient and strength up. I have to say this sounds so easy but it's so frustrating. I have lost some of my appetite but I'm eating. I am by nature a smaller person anyways so losing as much weight as I have is quite noticeable on my body. I'm forcing the food down and nothing. However I have not lost any weight in two weeks so that's a positive. This is just something that I have to think about all day everyday. Both of my doctors agree that my weight lost is caused by the activity of the cancer. It was explained to me that my body is fighting so hard that it's like running a half marathon everyday. Being an old runner they thought I might relate. So the calories are just burning so quickly. So I'm on two weight gain drugs and eating as much as I can.
We also decided together to immediately start radiation on my bone mets in my spine and hips. So after two days of being scanned and tattooed I started on Monday. The actual treatment is not too painful but unfortunately for me the laying on the hard table for 40 minutes while they line me up and zap those monsters out of there is horrible. After seeing the new scans when preparing for the radiation we were very surprised at how much the cancer was invading the spine and hips. So original two zaps for 5 straight days turned into eight zaps for undetermined amount. When we first talked radiation I was not thrilled, esp being told that this will only help the pain and not take the cancer away. Many time that may not happen with carcinoid because it so unpredictable. However, I would love to get a little relief from the pain so we can all get back to a normal summer. We made a return appointment to Vanderbilt for July 16th where we will reevaluate and make some important decisions. Hopefully, I will have put enough weight on to start a new chemo treatment. I am thinking that I should not be waiting much longer. So praying that we, the doctors and I, are all on the same page by then and I can start kicking some cancer butt. Ultimately the decision to start the stronger chemo is my choice. I know my body the best and I don't want the cancer to win because I'm waiting to start the fight. It kinda reminds me of training for a race. Sometimes you train so hard. You become strong and finish with no problem. Then sometimes your body goes through setbacks or injuries and you know you could be a little stronger but you run the race anyways. It'll be rough and your time may be poor but you run and finish. That may be my choice in a few weeks. Whatever I decide I know that God is running next to me so I will be OK.
Like I said I started this post awhile back and glad I'm finally done filling everyone in. I love writing about my experiences, good stories and happy endings. The topic today is so daunting for me to write about so I apologize for it taking too long. I also want to ask for everyone to pray for the family of a friend of mine, Mickey Eckert. She suddenly passed away on Monday. Mickey leaves behind her husband, three children and a new grand baby. After one of her daughters fought cancer as a child Mickey became a huge advocate for Cancer research and Make a Wish. She was also volunteered with several charities. She had a very strong relationship with the Lord so I know she is resting in complete peace. As kind as she was is as loved as she is so I ask for prays of strength for everyone that loves her.
Happy 4th. Enjoy you family because you never know when your called home.
Wednesday, June 6, 2012
Austen my high schooler is the first one out the door. Quite early too at 6:50. This morning when he came down stairs for breakfast which for him usually consist of a glass of OJ and a quick cereal bar or a cookie whatever is closer, he had a smile for ear to ear. He has always had the biggest and brightest smile. I high fived him and greeted him with some stupid thing like, you will leave a freshman and come home a sophomore. He laughed and I reached out and gave him my careful hug. He is so much bigger then me now so our hugs consist of me wrapping my arms around his waist and he putting his chin on the top of my head. I told him how happy I was to be here and he shook his head yes and quitely said, "not as happy as I am mom". Almost quite enough that he did want me to hear it but he did want me to hear it. He started to walk to the door and I followed him. I jokingly told him I was going to watch him walk across the street like I use to when he was in first grade. As he walked to my neighbors to get his friend I kept yelling bye and he kept waving. Just like when he was little. Just so he knew I was watching him and he was not alone. I know I was annoying but I just wanted to remember today. Finally he got to the end of the yard and I remember I forgot to tell him the thing I tell my boys everyday. I then yelled, "Make good choices and do your best and.....". He finished it with "and then do one more". I then closed the door to get the others two ready.
The other two were not so eventful. They were a bit crabby and did not enjoy my happy mood. But it did not change my spirit. I can not even began to explain how thrilled I am to be here. Every milestone my children have I think about the time the doctor told me six months. I have to say today seems like an even bigger event because theis year was a very rough year for me physically. Its obvious by looking at me that my cancer is progressing. I am way under 100 lbs. and no matter how much I eat I cannot put any weight on. Doc says that my body is fighting so hard it burns so much its like running a half marathon a day. I am in constant pain and so tired all the time. My last set of scans where not as promising as we wanted. The cancer is growing quickly and invading more and more. We had several chemo emobolizations, some experimental chemos and the PRRT treatment in Switzerland. Not to mention several unexpected trips to the hospital. Its been a rough school year for me but the boys have gotten through it. The boys have done great through all the challenges we have had with my cancer. For that I am so happy. Days like today make all the suffering and pain worth it. I am here. I got to kiss and hug each one of the boys today as the closed the door on one year and open the door to another. Especially for Logan who will be starting High School in August.
This summer I am determined, despite what the scans and doctors say, to make the best of my time with each one of the boys, Mark, my family and my friends. I am really going to try hard to fight through the pain and fatigue so that I don't have any regrets when they go back to school in Sept. My doctor recently said that we need to focus on getting through the summer. He wants me to concentrate on quality of life now. Well in some ways that is what I am going to do with hopes that will help me with quantity too. I am not however quitting the treatmens yet. Hospice is not ready for me yet. Mark and I are realizing that things don't look as promising as they did when the boys left for their first day of school in Sept of this past school year. But we believe in miracles because the past four years we have seen so many. Those true miracles are what has enable me to say goodbye to them today and see them come home tonight.
It is unfortunate that because of the progression of this cancer I cannot do the things I use to be able to do, but its fortunate that I am here to do the things I can. Looking back at that day I was told the cancer is back I NEVER thought I would see any of the boys go to High School. I know I was pretending to be tough and that I was going to bet all odds. I got angry at the doctors for writing me off but I now can admit that deep down I thought I would be gone by now. I have tried everything there is and every new treatment that pops up. At times they work temporarily and then the beast starts taking over again. In fact I am planning on starting a new chemo cocktail next week after I get back for Vanderbilt see Dr. Liu, a carcinoid specialist. I believe that God has put those treatments in front of me to keep me here. I feel so blessed He has taken care of me through this whole journey. Writing this reminds me of a quote I read recently that is so appropriate for the last day of school. It as follows:
"When you are going through difficulty and wonder where GOD is remember the teacher is always quiet during the test."
There has been many tears this year but many smiles too. The tears and fears are so real when you or your loved one is fighting a terminal illness. But the smiles are more then most too. Little things like the last day of school, being able to attend your sons basketball game, watching your son rock the choirs concert or being able to sit in the car and park close enough in the cold to see your other son's soccer game brings smiles that at one time I may have taken for granted. Every year, even before I was diagnosed, the last day of school was exciting for me because I loved spending the summers with my crazy wild blue eyes boys. But since my relapse and my terminal prognosis making it to see the finish of one more school year is amazing. I am so glad I learned to stop and smell the roses. I would say each year the smell is sweeter and sweeter.
THE GOOD IN CANCER!!!
CAN I CARRY YOU
Can I Carry You?
one more time before you grow.
And tell you that I love you
so that you will always know.
Please let me tie your shoe again.
One day you'll tie your own.
And when you think back to this time
I hope it's love I've shown.
Can I help you put your coat on?
Can I please cut up your meat?
Can I pull you in the wagon?
Can I pick you out a treat?
One day you might just care for me,
so let me care for you.
I want to be a part
of every little thing you do.
Tonight could I please wash your hair?
Can I put toys in the bath?
Can I help you count your small ten toes
before I teach you math?
Before you join a baseball team
can I pitch you one more ball?
And one more time can I stand near
to make sure you don't fall?
Let's take another space-ship ride
Up to the Planet Zoor.
Before our Cardboard Rocket
doesn't fit us anymore.
Please let me help you up the hill.
while you're still too small to climb.
And let me read you stories
while you're young and have the time.
I know the day will come
when you will do these things alone.
Will you recall the shoulder rides
and all the balls we've thrown?
I want you to grow stronger
than your Dad could ever be.
And when you find success
there will be no soul more proud than me.
So will you let me carry you?
One day you'll walk alone.
I cannot bear to miss one day
from now until you've grown.
Friday, May 18, 2012
The boys are helping me forget a little about all the above because like I said they started their spring sports and summer leagues. So we have two in baseball, one in soccer and two in summer/spring basketball. Just typing that sentence makes me feel blessed that I am here to see them play. I don't get to every game now, especially when the weather is cold or rainy. If a virus is not caught the bone pain puts me over the edge. It makes me sad because I remember when the boys were young and saying that I would never miss anything they did if I could help it. I do try really hard though to make it to most of them. I was thinking that I was burden for them to have me tag along. I'm in so much pain and its harder for me to walk. Then I can't stay long. So if Mark is coaching and I'm having a bad pain day its impossible for me to sit though a two to three hour baseball game. But they made it clear they just want me there to see a little. So I try to drive myself or the other day a friend took me. Tonight Austen had a basketball game. Yes basketball, when you reach High School sports are all year long. This is just a summer league. I felt pretty good because it was a gorgeous day in the Burg. We made it there just in time to drop him off but he said he will wait until we park to help me. I told him to go but he insisted that he had enough time. When he helped me out of the car he asked me where my little purple pillow was. I take it to alot of place because its good for the spine pain. I told him I would not bring it to where anyone would notice because I don't want to embarrass him. He gave me the old teenage shrug and mumbled, "you will never embarrass me mom". I felt so happy that he did not think I was a burden.
I have so much to get you caught up on. First I want to tell everyone about an experience I had a week ago Sunday. In the early afternoon, beautiful perfect day, I went to Logan's soccer game. I love watching him play. He's a goalie, like Mark was, so its a lot of pressure. He doesn't feel the pressure, his mom feels the pressure. I watch the game with one eye closed and one eye open, just like I watch Austen's and Nolan's pitch in baseball. Ugh the Pressure! Anyways I was sitting with my favorite soccer family, the Abdulovics and we were talking about my scans results, my treatments and just the cancer battle in general. I tend to be very candid with them because they have been by my side since the battle began. So its important for them to know what going on. Also, they are just that couple that I know I could pick up the phone anytime and they would be standing by my door to help. Help not just me but Mark and the kids. In fact this Halloween Janet went all over Pittsburgh to find a special custom for Nolan with literally no notice. I was told they were sold out everywhere and I had chemo early that day so I knew I would not be able to go search. Well she found it. I want you to understand I know I am blessed that I have so many people in my life that would do that and the Abdulovics are those special ones.
Anyways sitting next to me was a Dad from the other team, who I must say looked completely overwhelmed, with his two sons. They were older maybe 10 and 13 and not very well behaved. It wasn't bothering me because having three boys I have had times like those. However, I could tell the dad was embarrassed and had little control. They were actually fighting each other and really disrespecting the disheveled dad. Towards the last half of the game the older boy pushed the younger one and he landed right in front of me touching me feet. The dad apologized to me and I said that I have boys and understand. I believe the man had been listen to our conversation early and already knew that. He then asked me if they fight like that. Janet who somehow thinks that my boys are perfect, which they are not, shook her head no to the man. They do bicker at times but the don't lay the hands on each other. To spare his feeling I told him they bicker. He then began to tell me he was a single father and they lost their mother to cancer six months ago. At that moment I felt an instant connection along with a big lump in my throat. I could tell he wanted to talk about it so he quickly continued on about the mess the boys where in. I asked him what cancer she past from. At that moment his answer almost knocked Janet, Daryl and myself to our knees because he said Carcinoid. We continued to talk about her battle which only lasted 9 months, with 6 of those months in bed. It broke my heart. I could not help but think despite my last scan results and the struggles I have been having how blessed I was to have four years, as of yesterday, from diagnosis especially since they told me my battle would be six to nine months. Four tough years but four years. Several surgeries, trips to several doctors all over the United States, many tough chemo treatments, clinical trails and trips to Switzerland in those four years but four years. Four years to see my kids play sports, go to school, first formal dance, knee surgery, sports disappoints, music concerts and several other milestones. Four years to love my boys like there was no tomorrow. How blessed am I!!!!
So not only did this mother have carcinoid cancer and three boys close in age, one actually a goalie like Logan, she was a photographer as well. He said that there were so few pictures of her with the kids because she took them all. He must of heard me earlier tell Janet and Daryl that all I wanted for Mother's Day was to have a new family portrait taken. Because in all the pictures, I being the photographer I am always behind the camera. But not just a portrait but fun taking the portrait; good attitude and all. The crazy likeness to both of our families was so incredible. What a crazy experience? Or was it? In the words of my pastor, "you go know place by accident, where ever you are God is sending you". During our conversation the dad mentioned to me that he is so angry with God for taking her away from him and the boys. He talked about how much he loved her and what an amazing mother she was. He said that he worked all the time and she did all the "kids stuff". Our conversation about God moved on quite smoothly, which surprised me. We continued to talk about God and this man's Christian religion; I mostly listening and he mostly talking. He said he was a strong Christian before she got sick and they never missed church. The kids participated in all the church groups and his wife did several Bible studies. I asked him if he still has faith that there is a God and he said yes. But he said, " I am angry at Him". He is working hard to get through the anger with his pastor but he is really struggling. I am not real good at preaching, especially at a soccer field, so I really did not know what to say. As he was going on about his anger, which is completely understandable, I just said a quick pray silently asking for the words to say to him.
As the game ended Daryl started cleaning up my space, see how they have my back (I always bring a chair, the purple pillow for my spine, and some food). I said my goodbyes to dad, and told him I will be praying for his peace with the Lord and I know then everything else will fall into place. He then reached out and gave me a hug. It was awkward but I knew it was what he needed to do. However, I was very relieved the conversation was over. It emotionally drained me. As The Abdulovics and I walked to back to our cars we were all wiping our tears. We were in awe of what just happened. We all were putting Mark in the place of that man. I hope they realized, like I did, that the meeting was meant to be. As I was driving home I could not help but think how much I needed that man to tell me his story that day. He was thanking me for listen meanwhile I was thinking how lucky I was to hear it. After the week of bad news and feeling kinda down I just got smacked in the face with how blessed I really am. So the scans are worse and I am sicker then before, I am here watching my boy play soccer. My husband is on the sidelines coaching and watching me from across the field. I am sitting with wonderful people, play with their five year old and able to talk to them about my cancer.
Janet tried so hard to hold back her tears but the fact that she cried to me made me feel so loved. Her telling me that she could not stop thinking about Mark gave me strength. I know that when the time comes that will not be my husband because he will be surrender by people who care and love us. I know that we will have many looking out for Mark and most importantly the boys. I worry about Mark being alone and the boys not have the "mom things" done for them. I think all the time of all the little behind the scene things I do. The past four years I have been so blessed to have the privilege to teach them so much. On the flip side of that I feel like I have crammed a life time of lessons into four years. But after sitting next to that man at a soccer game I now understand my urgency more. Thank you Lord for that smack of reality. Thank you for helping me appreciate the time I have here. Mostly thank you for putting people and situations in our lives just when we need it. As I am writing this post I almost wonder if that whole incident even happened. Was that man for real or was he some kind of messenger. Could his situation be so similar to ours with such a different outcome? Why was their out and mot us? Whatever it was it defiantly shook me to reality and not let this cancer run my life. I once again reminded myself what the doctor told me sucks but he is a scientist reading the scan facts. The real doctor is the man above. Mostly, I learned that I need to keep the fight going no matter how hard at times it going to get. I have been in such agony lately and then the latest results came, that I've been wondering if God is telling me something; like relax and let it good. But this guy woke me up and I realized God is saying, "Get your ass going and start fighting." Not sure if God uses "Ass" but why not.
Please keep all families fighting cancer in your prays. Tomorrow I was asked by the American Cancer society to speak at the closing dinner for the Relay for Life. I will be speaking to all the survival. I hate the word survival when people are still fighting but it is what they call those who beat cancer and are still battling. I speak many places and times but this one is going to be tough. Looking out to those who have gone through what my family is going through is really tough for me because I know the pain they have in there heart and in their uphill battle. So please keep me in your prays. Love you all. Thank you for loving me through this journey.
Until Next Time,
Wednesday, May 2, 2012
With all that said, the results were mixed. There is evidence that the Swiss treatment, (Y90), is doing something. It is still showing attachment to many tumors and some are being invaded. There is no shrinkage at this time but that not saying it still can't happen. Unfortunately there are several new lesions in several different places. Some larger bone mets, explains all the horrific pain, and some small one in my left and only lung. Which has always been clear and beautiful. There is also action in the liver again. However they don't know what that is until they compare those with the Swiss scans. We are waiting for that. The scans show the the cancer is speeding up. But like I stated they are small and the lung is a big organ. The question is how fast are they growing. Many times you read about carcinoid cancer as being a slow growing cancer. That frustrates me because MANY times that is not the case and much of the information on the Internet is outdated now. My carcinoid cancer has never been slow. When it is in its growing season is spreads like that bad honeysuckle I had filling my yard as a kid. When its frozen out is stays stable then once it starts growing again it invades quickly. My point being I need to take fast action on the new mets that appeared.
We have twp plans of action. One laid out by Dr. Friedland, my oncologist, and one laid out by Mark and I. Dr. Friedland changed a lot of my meds. He put me one a weight gaining drug, I am way below 100 lbs., and wants me to start the chemo drug Sutent. I am looking for any carcinoid patients that have tried it. Please email you findings. It has some nasty side effects and I am a little afraid I am not strong enough for it right now. However, I did go to pick it up and good news it that my insurance covers it. BAD NEWS is my copayment is $332 a month. But we are going to pay it, not sure how yet but God provides. Mark and I are planning on going to see two specialist in the very near future to see what their recommendations are. One is Dr. Liu in Nashville and the other is the famous Dr. Woltering in New Orleans. Hopefully we can get in to see them in the next couple of weeks. I am really worried about making the trip with the condition I am in but once again God will lead us.
There is more but the above it the most important and most to be concerned about. I have to say that all the support and love I get has really gotten both Mark and I through days when we have results like these. I ask for more prays. I especially need prays for my boys and Mark. Watching me suffer so has really been a struggle for them. I sometimes wonder if it would be easier to go into the hospital to get through things when they get bad. I think its not fair for my boys and Mark to have to see me at my worse. Not to mention I can not handle the pain at times either. But Mark refuses to hear of any of that.
Please pray for our family. Please pray for pease and acceptance. Please pray that when it get really bad I have the power to do the whole reach down and whip some fighti. We will get through this looking like we know what we are doing. Thank you all for reaching out and please continue it keeps me alive.
Thursday, April 26, 2012
I am not trying to cushion any news, I just don't want to write inaccurate information. Not to mention Mark and I have not sat down and talked about any options. So as soon as Mark and I are all updated we will talk to everyone about them. I do however ask for prayer while my oncologist, Dr. Friedland, consults with other specialist.
Love you all,
Monday, April 23, 2012
Hope is...the river of life between the shores of love and the bridges that joins the two.
Hope is...the first ray of sunlight in the dawn of each new day.
Hope is...the song of the dogwood that echoes in the dead of winter.
Hope is...the journey to the undiscovered and the safe harbor that awaits your return.
Hope is...a silent street at midnight in the middle of the city.
Hope is...life at the oasis, vision at the summit, and peace in the valley
Hope surrounds you like the mist surrounds the rocky coast; it is with you as you sleep and greets you as you wake.
it is the shirt upon you back, the belt around your waist, the sandal on your foot.and the prayer within your soul.
Remember the nervous flight of the autumin leaf;
Hope is the wind that catches it, carries it, tenders it,
and finally delivers it the rest beside the acorn.
Hope is the art of faith;
it is where theses songs were born
and how they found their wings.
These are words I've wanted to say but don't know how to say them. Hope is all I have to hang onto. Today I had a day of cancer frustration. I went to Hillman to receive my treatment and for a scheduled appointment for my oncologist to discuss my big scan results from Friday. These scans will determine one if the Switzerland treatment has done anything. Two it will hopefully why my pain has increased in the last six months. They are to be sent to Switzerland so that I can plan out my next treatment step. When I got there of course my insurance was not covering a treatment that I have been getting for two years and has always been covered. Which meant until I go home and do the three hour phone calls to straighten it all up, NO TREATMENTS. Then I go to my appointment and the scans have not even been read yet. They want me to wait while they rush a reading. Like I am asking for them to grade a term paper or something. This is my life on film, I was not letting them rush through the reading of them and giving me a half attempt for a report. I have been there and done that show before. It is not reading tea leaves or tarot cards. This is terminal cancer you are looking at. The importance of a great report is what will determine my fight. So we reschedule it all.
I started to get upset and angry that both Mark and I waisted a whole day. Mark taking off work and me struggling in this unexpected freezing tempsI thought about my hope. I felt like nobody who are suppose to be taking care of me had no respect for me or my time. They go on with their lives after the make the typo error for insurance codes or take their time in looking at few scans. They don't see their time as an hour glass like I do....what does it matter if I need to wait. They are not going anywhere. I felt a tear ran down my face. Not a tear of sadden but a tear of defeat. Then I starting thinking about hope. The words above which I read as I waited for Mark to get ready to take me to the appointments start going over in my head. "HOPE SUNNY".....I kept hearing. I looked at Mark who normally would be fuming and cursing. He seemed like he could care less that we waisted our time. I said no more about the day while I wiped me tears. Then I thought, "find something good in this or you will go crazy". I then realized that If I had treatment I would not be able to go to Nolan's basketball game tonight. At that moment I had HOPE.
Whatever the results are I put in God's hands. It's not going to change my love for my children, my toughest fight or my FAITH AND HOPE!!!! So what is a few day. Not to mention I got to go to his game.
I will be getting my results later this week. I promise I will write a post on the results, the next game plan and why my pain is so bad. However it may take me a few days for me to disgust and make plans. Please understand that.
Friday, April 20, 2012
Two rows in front of me is a woman in her 50's I would say. Who knows though she could be in her 20's but cancer ages many? She is in a wheelchair and has a scarf over her bald head. She looks exhausted. She caught me looking at her and we smile at each other. I think she is alone. Over by the door is elderly man smiling from ear to ear. He is drinking that nasty crap they make us drink and he is loving it. It looks like his wife and maybe his son are sitting with him. They too have a smile on their faces but behind it is a worry I can see. He is loving that drink crap. He is holding his wife's hand and leaning over his lap to struck up conversation with his son who I would say is in his late 40's and dressed pretty well too. That man just seems happy to be with his family even though it in the waiting room for cancer scans. Goodness that little old man is an inspiration. His son seems to think so too.
There is a man with a whole group of people with him sitting on the other side of the room. I am listening to them talking to another couple sitting there. They drove four hours to get here for a PET CT SCAN. They must of taken a big van because there is a whole group of them. They seem to be making the best of the situation. It sure is nice to see all those people supporting him. The nurse just called the little old mans name to come to the back. Mr. Kennedy was his name and he jump right up and said, "I'm yours for a while, but my wife wants me back. The girl laughed and his wife shook her head yes and she looked so sad". He hopped right back with the nurse with that same big smile on. I bet he's trying to put a big front on for his wife and son. What a true leader of his family! I looked back over to the son and wife and she is now holding her son's hand. SWEET!!! I hope he gets good news.
I think I am next so I am going to end now. I will not get any results back until next week and I will update with a post. PROMISE. Please pray that I can finish the scan. It so painful for me anymore. I am putting the results in God's hands. What they are they are and I can't worry about them. It's out of my control right now.
Just called me name.
Sunday, April 15, 2012
I have to share with you an experience that I had this week with just a simple call to my cell phone company. I have been fighting with my cellular phone company about charges on my bill from Switzerland. To make a long story not so long, I purchased a international plan right before I left for my treatments in Switzerland. It was a plan that was to discount phone calls and text messaging for any international calls I make. I purchased the plan on my entire families phones so that the boys can call me anytime when I was gone and the bill would not blows us away. Well they charged our account but never gave us the discount. My phone bill from Switzerland was outrageous because they did not calculated it correctly. I have called AT&T six times since January and each time I am told I am right and they will credit my account. Well it never happened, so this being my seventh call it is safe to say that someone was getting a "Sunny Smackdown".
After going through the whole ten minute menu of press one for this, press eight for this, press 65 for a sandwich and diet coke, I finally get a live person. Of course now just in this phone call alone I have started to explain the situation three times and then quickly get placed on hold and transferred. I was in horrible pain and completely frustrated by now. A simple call which should take no longer the 10 minutes and is now going on 20 minutes and I have not even talked to the right person yet. Finally another operator answer and before he could say, "Hello my name is John and thank you for calling AT&T, how can I help you?", I immediately ask him to please don't transfer me. Once again explain the situation to John and he kindly says, just like the others, he will take the charges off. As he clicks on the keyboard he asked me how I enjoyed Basel, Switzerland. In a casual conversation I told him fine and he continued to ask more questions like why I chose Basel to travel too. I told him the reason for being there was cancer treatments. He of course, like everyone else, said he was sorry to hear that and then continued to click on the keyboard. after about a minute of him clicking and small talk he then said that he could hear in my voice that I have faith. I paused and said I do.
Then the conversation took a turn to faith and hope. We talked for a minute or two about believing in the impossible and miracles. He asked me if he could have his church pray for me. Of course I am a strong believer in pray and the more the prays the more God hears, so please spread the word. He then told me that he has been through a lot in life and something that he says over and over again is PUSH. I agreed that we should keep pushing but he took it further. PUSH meaning Pray Until Something Happens. I thanked him and joked that I was also going to PUSH that my bill gets corrected too. I really just wanted to end the call because I was exhausted and did not want to talk. At the end of the conversation he wished me blessing and told me that he needed to talk to me. He explained that his brother was just diagnosed yesterday with cancer and he did not know what to say to him. I told him to tell him what he just told me and if says he tells his brother he will pray for him to really pray for him.
He claimed he credited my bill, he wished me good luck and we ended the conversation. When I think about the whole purpose of the phone call it awes me as to what I got out of the call. Since I have been diagnosed I have been praying for the miracle of healing. Over and Over again I read the scriptures that tells about all the wonderful miracles of healing. I know that it is possible. But in the last few weeks I could not help by wonder why its taking so long. Maybe it's not God's will for me to be healed. I have been questioning why I have had so many small prays answered but that one big one has not been answered. When the pain is at its peak its so hard to keep myself from traveling to the dark side. I don't feel sorry for myself or ask why me but I do wonder why my pray for complete healing has not been answered.
After my conversation with AT&T John I realized that in waiting for that big miracle to be healed maybe I sometimes miss the little miracles. Maybe the conversation with John would never have happened if I was healed. I think both John and I needed to talk to each other. Who would of guess that a conversation like this one would had happen at that moment. But it did and it was meaningful to both of us. I would hope that even after I am cured I will still want to help others get through their cancer battles. But maybe God has other plans for me. I also hope that after I am cured I will still be moved by an event like what happen with John. I can tell you that my battle is getting harder then I ever expected. My kids and husband are tired of seeing me suffer. So am ready more then ever to receive my healing. I refuse to believe that it will never happen. I know that my cancer is suppose to be incurable. But I also know that nothing is impossible. I have to hang on to hope or I have nothing else left. I also know that throughout my battle there has been little miracles that are sometimes missed because I want so bad for the big miracle to come. I am going to try to focus my attention on those little miracles and still reach for the BIG ONE.
Please keep my family and myself in your prays. Its been a rough road lately and with our strength we are hanging on. Sometimes I feel like we are very much like that cute poster of the kitten falling and hanging on a rope, written on the poster is Hang In There. That is how we are doing it, if we let go a little down we will go.
With Much Love,
Saturday, March 24, 2012
Yesterday I watch my son play his first baseball game in 17 months, since his first surgery on his knee. April of 2011 Austen injured his ACL, MCL, meniscus and PCL of the right knee playing an AEU basketball game. He had reconstructive surgery a few weeks after the injury. He had 9 months of physical therapy just in time to start playing again in the middle of the basketball season. However he had missed the whole summer season of baseball, his true love. A week into basketball season he had his jaw dislocated. After two weeks of chiropractic work and rest he was back on the court only to injure his left knee the first game back. Thanks to much prayer the left knee was just a bad sprain of the MCL. Again going through physical therapy for five more weeks. I have to say I truly thought this would crush him emotionally.
I think back to a few days after his first surgery and the pain he was going through. I was helping him put his brace on, he look so sad and discouraged. I told him that this is just temporary and he would back to sports sooner then he could remember the pain. He said that he knew that, but he said it without convection. I really don't think he actually believed it then. We started talking about what he had to do to get back on the court or field. I could tell he felt defeated and scared. He had so much time on his hands without sports. I told him that this could be the most important time of his life. This is when he will learn what he is made off....yes physically, but mentally mostly. Of course like moms are suppose to do I hyped him up and told him he could do it all. However I don't think our conversation impacted him until I told him he was tough. He said, "I'm not as tough as you, mom. I hope I can do what you do." I laughed because I can't even open a pickle jar.....I am a weakling now....he thinks this is tough well this should be easy then. I said, "Are you kidding me, your have always been tough. I look at you for help". I explained to him that the times when I am losing my strength I just close my eyes and imagine the goal. I then told him that I really pray a lot and then my fears go away. I don't know what I said that changed him that day but the switch was on. Austen has never been afraid of anything. I call him my extremist because everything he does he does to the extreme.....both good and bad. Ever since he could walk he would try anything. He would never quit trying at something either. If it was learning to write his name or making the small basketball in the big boys hoop. I remember him at 3 years old going to a the basketball court at the park across the street from our first home and shooting and shooting. The ball never getting more then 6 feet from the ground. He would just say over and over again, "one more try, one more try". He thinks he not as tough as his little mom. He is crazy.
After that talk which continued on for a while I saw the real Austen emerge. He worked so hard to get back to his old sports self. He went to physically therapy 3 to 4 times a week all summer and fall. When his friends were at the swimming pool or summer barn fires, Austen was either at the gym or at physical therapy. He would come home and do more work for an hour or two in his room. School started and homework kicked in. When he wasn't studying he was rehabbing. He was so determined to be in the best shape he could be as fast as possible. After all his hard work he was so excited to go back to the surgeon to get the okay to go back to sports just before basketball tryouts. But when the surgeon XRayed him he told Austen he needed six more weeks of rehab. The surgery was more then most he does and the muscles around the knee were just not strong enough to hold up for basketball. I was crashed for him. I think I cried harder that night then I did after my last scan reports when they told me my liver tumors were growing faster. He did not shed a tear. He was not discourage at all. In fact he had that Austen determination in his eyes again. That look I see in him when he losing a game he wants to win. He worked even harder and harder those six weeks. Mark and I went to Switzerland for my treatments and Austen just kept on working. The week we got back Austen started back to basketball finally.
After two practice I got a call from him that he needed me to come get him in the trainers office. Of course I was praying that it was not his knee. You would think all that I have been through I would learn to not panic of a knee injury. It's not life threatening. It's his knee....but to him its his love of sports. I just thought that another injury would really break him. When I got there he looked like he did a few rounds with Tyson. He had gotten knocked in the jaw going for a rebound and is was dislocated. Another two weeks out. He took it with such a great attitude. He didn't complain or feel sorry for himself in the least. He did what he had to do to get back and in two weeks he was back.
Of course his toughness was not done being tested, first game back Austen drove for the ball and pop. I was sitting at the top of the bleachers and his scream echoed through my heart. He went down and was holding his other knee. Honestly, I felt sicker to my stomach then any amount of chemo could do for me. After MRI the news was not so bad.... sprained MCL and 6 weeks of rehab. Austen took it like a man and back at it he went. Worked hard and did everything and more to get strong again. Never a complained, a "why me" or even a crap this happened....he just plugged along. Went to every physical therapy, gym work and every basketball practice and game to cheer his team on. Just like he did for baseball the summer of the surgery.
Through his whole recovery I had learned so much about my son and about me. I learned that he has true faith in the Lord. Many times I prayed with him and many times he would pray himself. I don't lecture a lot about praying. I tell them to pray or ask if they want to pray with me but I don't want to turn them off. I think its important for them to SEE me have faith not me TELL them to have faith. My actions of pray and faith is what they need. They don't need me nagging at them to have a relationship with God. Nor do they need me always quoting the Bible. They need me to show them how to live like a Christian so that they know how to live that way too. I see that I never needed to lecture Austen about God because he got it and turned to Him during his rough time. I learned that he is the toughest teen I have every come across. Mostly I have learned that nothing is going to knock him down. He has hope and dreams that no injury will hold him back from. He showed me that he is truly a man. One that I can say knows how to reach deep down and pull out the best. Through all those months of rehab never once did Austen say the words, "I CAN'T". I don't think he ever thought those words either.
He showed me that perseverance is to have commitment to overcome adversity. To have perseverance you must know how to work hard and endure pain. He should me how to bear difficulties calmly, with patience and without complaints. Of all the days of physical therapy or gym time he never once did not want to go. He even missed a vacation because he did not want to miss his work outs. I have to say I really learned from him. We even did therapy together. I was learning how to strengthen my new leg. I tried to challenge him and he would laugh at me. He really was my rock through that time. I would see him watching me out of the corner of his eye to make sure I was OK. He would ask me for a thumbs up across the room and of course would pretend that I was great. We would chat on our way to and from in the car. He would talk to me as long as I let him listen to his music which I have to admit I kinda learned to like. But he never quit and would never let me quit.
So when I sat at his first High School baseball game I sat with one eye closed every play he made and every hit he had. When he ran the bases I held my breath until he made it to the next base. But I have to say I sat and watched with such pride. Yes he had a great game but that was not what my pride was about. My pride was that he played like he never missed a step. After the game, for the first time in 17 months I saw that Austen smile and wink. He of course has smiled through his injury but it was not the same one. There was something missing. Well when he ran off the field after the third out he looked over a me and there it was. The wink and smile that said, "I'm Back Mom". I held back the tears until I got home and said my prays of thanks.
I want to be humble about my son but I also want to express what I have learned from him. I guess I expected him to succeed after the first surgery but he kept getting knocked down time after time.....he kept getting back up. I could say that my cancer battle taught him how to fight back from this injury, but I know that this time cancer had nothing to do with it. It is his inner soul that got him back on that field. His self assurance that he could do it. Mostly though, it was his FAITH in God and his continue prays that gave him the hope. It's hard to look at our children for knowledge. As a mom I want to think that everything they have become is because of me. But this time I know deep down that what I have become is because of him.
Pleases pray that Austen stays healthy all season.
When the world says, "Give up,"
Hope whispers, "Try it one more time."