Faith, hope, and love. And of course the greatest of these is love. I am writing today because it is Sunny's 42nd birthday....and of course she is the greatest love of my life. I know that you have been following her recent blogs and we appreciate all of the prayers and thoughts as she battles the pain of and the potential implications of shingles. When this first was diagnosed Sunday morning at St. Maggies Sunny's initial comment was "what else can I go through." We both sort of joked that the "blessings of Job" was once again a dominant theme in our lives. She got over the initial shock of yet another curveball thrown her way and as she always does, spit on her batting gloves, grabbed her special Louisville "Cancer" Slugger, and dug into the batter's box. She went back to bat. Not for herself, but for her kids, for me, for all who love and depend on her. Our kids started back to school Monday, and Sunday was the last "free" day they would have of their summer, and those that know her well realized how tough it was for her to not be able to do anything special with them as a family that day. She even had to allow me to be the one to run out with the boys and take care of the last minute BTS(thats back to school in twitter speak I think) stuff which I know scared her as much as the shingles diagnosis did. (I did manage to get all of the right sizes, wasn't duped into any teenage impulse buys and came in under budget for those of you at home keeping score).
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.
Mark
SUNNY CARNEY After a courageous 10 year fight battling Carcinoid Cancer, Sunny Carney, of Plum, passed peacefully on Saturday, November 3. She was married to her devoted husband, Mark; and was a loving mother to Austen, Logan and Nolan; daughter of Patricia Jennings and the late James J. Jennings; daughter-in-law of Dale and Dottie Carney; sister of Judy Phillips (Ray Jr.), Lynn Pesta (Teddy), Michael Jennings (Vicki Lynn), James Jennings (Sue), Joseph Jennings (Elizabeth), Sheila Fortes (Jim); sister-in-law of Craig Carney (Julia). She is also survived by numerous aunts, uncles, cousins, nieces, and nephews, and was a true friend and inspiration to many.
In addition to being an inspiration to family and friends Sunny inspired carcinoid cancer patients across the globe through her blog, and then her book "The Sunny Side of Cancer. She spoke at numerous cancer events locally sharing stories of her journey which led her from Basel, Switzerland to all of the top Carcinoid Cancer specialists here in the states. She was an advocate for better diagnosis of the disease and for insurance coverage of treatments. She fought with grace and dignity, never letting the pain inside challenge her faith or diminish her love for life.
Memorials may be made to "Carney Family Fund", c/o S&T Bank, 2190 Hulton Road, Verona, PA 15147.
Friends received Monday 7-9 p.m. and Tuesday 3-8 p.m. at Unity Community Church, 215 Unity Center Road, Plum, PA 15239.
Funeral Services will be held on Wednesday at 11 a.m. in Unity Community Church with Rev. Frank Deluce officiating. Arrangements entrusted to CHARLES W. TRENZ FUNERAL HOME, INC.
VIEW GUEST BOOK Published in Pittsburgh Post-Gazette
Friday, August 31, 2012
Sunday, August 26, 2012
Mountain Climb
"Never measure the height of mountain until you reached the top. Then you will see how low it was"
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".
With Love,
Sunny.
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".
With Love,
Sunny.
Tuesday, August 7, 2012
Day of tears
Saturday was a full day of emotions for me. In the morning I attended my old childhood friend's father, Tim Brown. My friend Jodi and I have been friends since 1st. grade. She was a bridesmaid in my wedding. Her family has been wonderful support during my battle. In fact in lui of flowers they asked for donations to go to my fund. Mr. Brown has been fighting throat cancer with dignity. He is a welled loved man in the immunity were we grew up. Even at one time owning a local bar. So as you can imagine the funeral had a huge turnout. He was a ver humble man, because of that he was liked by many. Actually Jodi is the same way. She is just that person that is so easy to be around because she fun and simple. Probably why we were friends growing up because I liked attention and she was happy to let me have it. We lost touch a little over the years but I know she's a phone call away. After a battle with throat cancer at 65 Mr. Brown passed. Jodi, her sister and her mom told me that the last book he read was mine and it gave him the will to keep fighting. I Felt really good when she said that the only thing he would read was sports related.
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.
With Love,
Sunny
We
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.
With Love,
Sunny
We
Sunday, July 22, 2012
Hello my friends,
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.
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
Catching Up!
I know it's been a long time for a post. I've been wanting to catch everyone up on so much. Truthfully all the medical jumble is not my favorite thing to write about. Funny thing is the original purpose of my blog is to do just that....inform my family and friends on my treatments, keep them posted on all new outcomes and test results and how I was getting through everything. As you all know who follow my blog it turned into so much more, even a book. CRAZY!!!! For me this blog has been been my release. As I progress in this cancer it's been harder and harder to post. I can't sit long at the computer. I will start a post that I know is important and then the spine pain flares up and I save it thinking I will come back as soon as possible. Then I get another post idea and start a new one. So I do have a ton on unfinished post that I can pick up anytime. This one in fact is one that I think I started three times. My friend gave me her old IPad and it's been wonderful. So after I update on all this yucky stuff I will get back into the post I love to write. The positive, fun and living with cancer post. Hopefully continue with more "Breathtaking Moments" and "Good in Cancer Ones". I seem to get great feedback from those. Truthfully I love experiencing those times too.
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.
Love, Sunny
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.
Love, Sunny
Wednesday, June 6, 2012
Summer Time
Today was the last day of school for my boys. I am now officially a mother of two high school boys and one middle schooler. This is another milestone that I reached with my boys and I can breath a little more. I am not rushing them growing up but I am hoping that I don't miss out on any opportunity to help them grow to be men. I made it through another school year. Yes I said "I"..... the boys of course would make it. Its just been a very difficult cancer year. I just think back to the first day of school and how sad I was that my summer was over with them. I think is almost impossible going through this battle not to think every once and a while that this may be my last of something. My last summer, last Christmas or last Last day of school. This morning I felt so happy that I was able to see them walk out the door one more time in one grade and come home in the next grade.
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?
Sunny
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?
I guess that I can hold 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.
Loving Summer already,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.
Sunny
Friday, May 18, 2012
God knows where he send you.
Sorry its been so long since I posted and stumped everyone with the scan results. We have been very busy with the boys starting their summer sports. Well Mark more so then me. I am also still researching some more treatments and trying hard to get this damn nasty bone pain under control. I am on a new weight gain program. Its only been two weeks but still no luck. I have also been taking some appetite enhancers. That seems to be working well. Dr. Friedland explained to me that my cancer is working so hard to take over and my body is fighting so hard to stop it. That struggle is burning so many calories it hard to maintain a healthy weight, but it is so important. So please pray I start putting some on. We are leaving in mid June for Nashville to Vanderbilt to get some advice from Dr. Liu. I am praying he has some options for me. In the meantime, with much hesitation, I am starting Sutent chemotherapy. The $8800 a month drug is covered by my insurance, but the joke it that it has a $663 co-pay. UGH insurance companies are true crocks.
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,
Sunny
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,
Sunny
Wednesday, May 2, 2012
Scan results
I know many are waiting for the results of my most recent scans. Thank you all for the prayers. I have to tell you when I am asked if anyone can do something for me and I ask for pray it is really what I need. As many of you know,who are fighting carcinoid cancer, the answer to scans are not always straight forward and prises. Carcinoid is such an odd cancer and one time it shows up so clear on scans and other times it just hides itself. Hence the Zebra mascot. So there was a lot that went into interrupting my scans this time. Then Mark and I had to talk with the boys and figure out a game plan. Once again not an easy task. We like to do this with much thought and time. Of course time is not on my side but I have to careful at just blurting out information that is not all summed up. My friends and boys sometimes read what they want to read and not what I am actually writing.
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.
Sunny
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.
Sunny
Thursday, April 26, 2012
About Results
Hello my friends. I know that everyone is waiting for the results of my last scans done on Fri. I did have a doctor's appointment today where we went over them. However, the original scans were compared to an older scan and not the scans I had done in Switzerland. Even though my oncologist still could read what was going on we don't have all the size answers. He is sending them back to radiology to have them be compared to the right scans. I promise as soon as we figure everything out and I can filter through all the findings I will post them.
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,
Sunny
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,
Sunny
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