2011

First before I get into my post I want to update all of you on how I am feeling.  I have been overwhelmed with your emails and phone calls and assure you my lack of posting is only because my teenagers and the Holidays are keeping me busy and not because I have been too sick to post.  As I stated in the last entry the surgery went very well.  The recovery has been just as smooth.  Its painful and very frustrating that I cannot be independent but I am way ahead of schedule for healing.  I am walking with crutches and able to put weight on my hip and leg.  Sleeping is complicated and I don't think since the surgery I have had more the 2 to 3 hours of sleep at a time. However, I have plenty of time to sleep later.  I've been trying hard to tag along with Mark and the boys wherever they are going and even went to watch them Ice Skate at the outside Winter Classic Rink. After battle the crowds we ended up finishing the night at the PPG rink and then dinner with two other families.   That was a little rough, only because I LOVE to skate and it killed me to watch. I got some great shots though.  Mark brought the wheelchair but in all the confusion and crowds I just hobbled with the crutches.  Its been great the last week here in Pittsburgh with all the excitement going on with the NHL Hockey Winter Classic being hosted in our great city.  It's a good distraction for my sports crazed boys. I don't want the boys to miss out on that once in a lifetime opportunity so we are trying to make the best of my situation.  I feel so blessed that I am well enough to hang with them most of the time and the rest of the time they don't want me with them. I know it's not perfect circumstances but I am determined to do whatever I can and not put limits on myself.  Mark and the doc are not as happy with me pushing my limits. I don't think they can really understand until they are fighting this beast.  So I listen to the lectures, especially from Mark, and just do what I can do.

Before I started to post I went back to the post that I wrote this time in 2009.  Reading it reminded me how far I have come with this cancer in just one year.  As I am going through this journey on a day to day basis it seems so consuming. With each appointment, treatment, surgery, new researching, scan and then the news it is hard to look at the big picture. That is why I am so glad that I started this blog.  I am able to go back and reflect on the changes that have really happened.  Last year at this time I did not know about the new experimental treatment that I am attempted at the end of January.  The surgery seemed like a hopeless attempt to keep my leg.  And truthfully I was not sure I would be here writing today.

That is why I must say that once again I feel so blessed.  Over and over again I am told by those who love me, my friends and doctors that my unusual strength and fight is what is keeping me alive. I have had comments made to me that, "I keep getting back up every time I'm knocked down", or "I wont go down without a fight" and on and on. Just yesterday Logan and Nolan had a conversation with me about how tough I am.  At my last appointment with my oncologist, Dr. Friedland, he came into the room as I was reading a Joyce Meyers book titled, "Never Give Up" and he took the book from my hands.  He looked at it and said, "you don't need this, you'll never quit". I have to admit, I am quite humbled by all those comments and I want to start 2011 off by letting everyone know that I am NOT special.  My choice to fight it not unusual and it is not something that I do on my own. I don't have some super strength or power. In fact there are so many other people fighting cancer that are tougher then I will ever be.  But first and foremost what I do have that unfortunately others have not found is the Lord with me during every battle with this cancer.  Every time I am at my lowest point and I think I cannot do one more treatment, one more surgery or one more appointment I truly pull my strength through God and pray.  He gives me the ability to pull something out of somewhere and gets me or US (my family) through it.  He gives me the peace I need and the knowledge continue on the journey.


So 2011 for me is going to be about making a difference like so many have made a difference in my life.  Its going to be about reaching out to those who battle what I am battling but don't know where to get their strength from.  When I say, "battle what I am battling", I don't mean just cancer, I mean adversity.  I want to somehow express that if you give yourself and your problems to Him then He will give you the strength to fight it.  I don't think God will always wipe your problems away because you have faith in Him.  In fact if I look back since my diagnosis my struggles have tripled since then.  However, I think he gives you the peace and the tools to climb the mountain.  He puts you in situations and gives you people to help you through your troubles. This year I am still keeping my last years goal of FIGHTING FOR MY LIFE but I am adding a new ending.....I am FIGHTING FOR MY LIFE WITH A PURPOSE.  


Happy New Year,

Sunny

Upate

The surgery was a great success as of now.  I was home a few days, much earlier then expected.  As I explained in an earlier post the tumors have eaten away the bones in my right femur and hip.  The surgery was an attempt to clean out some of the cancer as well as strengthen the weak bones.  I had a titan rod inserted into my femur and some kind of bolt thing in my hip.  I would go into more detail but it is very painful and difficult to sit at the computer. 

Today's post  I want to dedicate  to my son Logan.  When the surgery was scheduled my goal was to be home from the hospital for his birthday today.  I feel so blessed that I am here and got to wrap my arms around him. We had a little mini celebration for Logan last night because his present was Penguin game tickets for him and Mark for tonight.  As I wrapped a few some gifts from his brothers and ordered his favorite Oakmont Bakery Cake for Mark to pickup yesterday I thought about how truly blessed I am to have him and his brothers to motivate me everyday to fight this monster.  I woke Logan up this morning with my usual, "wake up, wake up, it's your B-day......." song that they use to love when they were little but totally annoy them now.  Got some help downstairs to be there for breakfast that my mom was making and despite the pain I felt like it was my B-day. 

Its days like these that keep me going.  Its the memory of the day I held him for the first time.  The hopes and dreams that I had for me as a mother. If I look back at the past 13 years I never imagine they would be so rough for us but I did imagine that I would be here to celebrate his day on Dec. 15, 2010.   I also knew that the baby I held 13 years ago for the first time would be as fantastic as he is today.  So maybe my "Normal Rockwell" moment on December 15, 1997 did not lead to the exact "Normal Rockwell" moment today that I dreamed, it could not be any better.  He left this morning with a smile on his face right next to his big brother excited about the rest of his life.   What more can I of wish for 13 years ago?

Happy Birthday my deep thinking, kind hearted, athletic, musical talented, smart and handsome teenager.  I am so glad I am here to see this day. 

Sunny

Surgery

Tomorrow is a big surgery day for me.  The cancer in my right leg and hip has eaten away at the femur and hip bone so the surgery will make those bones stronger and hopefully relieve the intense pain I am always in.  It will also keep those bone, which are very brittle, from cracking.  I was told a year ago that this surgery was necessary then by the grace of God the bone started to look a bit stronger.  However, that progress did not last and the pain has gotten so much worse and there is no time to wait.

I have to share a little story with you which I am hoping by posting this story I will get some peace about tomorrow.  You know how you wish you God would sometimes just smack you right on the head to tell you exactly which way to go?  The question that I am sure many of you ask, "what is God's will?" is simple to ask but the answers don't always seem to be simple to find.  Well, last week I went to my regular Oncologist to get a check before the surgery.  I had noticed a few days before that the pain in my hip and leg was much better.  In fact there was a few times that I could take two steps at a time and sit like an Indian with no pain.  So of course I insist that my doc give me another scan or x-ray just to make sure that the bones had not improved before I go through this surgery.  As much as I love Dr. Friedland I have to say sometimes I have to give a little kick in the butt.  After much convincing from me he did a quick x-ray.  Later he come into the room were I waited and showed me that it actually has gotten worse.  So I left a little heartbroken, stop in the bathroom to shed a few tears, and went home.

However, that evening I still felt uneasy about the whole surgery. At times I can be so stubborn when I think I am right.  I could not sleep and kept thinking of way to to get out of this surgery.  I then closed my eyes and just prayed.  I prayed with such passion that God show me a sign, a sign I would noticed, that I am make the right decision about this surgery.  I finally fell asleep only to wake up a few hours latter to horrific pain in my leg in hip.  The pain was beyond anything I had every had.  It was breathing taking.  I screamed and Mark jumped out of bed next to me to try to help. Nothing he did and nothing I took helped.  For the first time in my life I got God's sign as clear as I needed.

I am not sure why I was doubting this surgery.  I hate to think it was fear.  Whatever, it is I surely should of seen what He was telling me all along.  The othro oncologist is amazing.  Several of my friends have heard of him and rave about him.  He even saved the leg of my good friend's daughter when she was suffering from a rare cancer.  Once again the out pour of help with the kids I am offered is amazing.  My family all pitch in to arrange schedule of when they will be staying with me.  The Christmas shopping is done, the house is clean and the decorations are beautiful.  Mark is at complete peace. And the pain is still there. The phone calls from friends and family today has been super uplifting. Not to mention my full email box of prays and the facebook wishes are bringing tears to my eyes.   Everything has been going so smoothly.

So there is no reason for me to have anxiety or fear.  Fear of the unknown or what is come is a waste of time.  I know that God has me at his side. Please pray for me in the next couple of weeks. 

“Each time we face our fear, we gain strength, courage, and confidence in the doing.”

 

 

 

Love,

Rest

So much has gone on in the last two weeks and I am sorry for not updating my blog.  We went to my favorite simple spot for Thanksgiving, Vero Beach, FL.  As many of you know my parents purchased a home their when my father retired.  Unfortunately, he passed away a few years later and did not get to see much of his children enjoying it the way he intended it to be. However, over the years that is exactly what we have done.  It is a place that you run to when you need to escape from your everyday crazy life.  A place that many of us go to when we need to sort things out or make huge decisions.  It has been used for refuge, getting over a lost and wrapping your mind around a tough time.  When you are there you get this complete cleansing and sense of peace.  The town of Vero Beach is simple and basic.  No big city with skyscrapers and a night life.  Just simple fokes with simple needs.

Since I've been sick it has been were Mark, the boys and I go to escape my cancer life.  Only my family and a few of my mom's neighbors know that I am sick.  The boys get to be together without any distractions, by the end of the week they have had enough of each other though. But it has also been a measure of how my cancer has progressed.  I try not to compare each trip but its almost impossible to do.  I have noticed that over the past two years my health and ability to do things has declined.  At home I don't notice as much because we just go on and I do everything I can.  In Vero I look back on the trips before and what we have also done before.  The last few trips have been an eye opener to say the least.  I always went to see the sunrise alone and in the beginning I would take a quick run on the beach after the sun comes up.  This trip and the trip before I actually waited for someone to step up and volunteer to go with me.  I pretended that I did not need them but was relieved when they came.  Running the beach was out of the question.  In fact I tried to walk the beach one day and quickly realized that was not going to happen, AT THAT TIME.  I spent more time in bed and was unable to eat much because I had an infection in my mouth.  I did not swim in the pool and as you all know was to tired to even blog.  The 19 hour drive was rough both to and home.  However the whole time I was there I felt so blessed to be there.

The boys and mostly Mark tried hard to push me.  I got angry at them one day and overheard Mark say to my mom that I am not being myself.  Although they did not understand, I knew that I needed to rest so when the time came for me to really participate in something I could with my full heart.  I probably could have done more and actually regret not reaching deep down and trying hard.  But what I realized after I got home was I needed that rest.  I needed that peace and I needed to be there for me.  I don't think through this whole battle I have ever did anything JUST for me.  Every treatment, every doctor appointment,every hour of research and every crazy "cancer trip" for that very important treatment has been for either my boys, my husband, my family or other carcinoid cancer patients.  I am not trying to be self centered but I think God was saying to me, "rest".  I have surgery coming up on December 10 and believe He was telling me to rest up to begin a new fight.

As I am writing this post I just heard on the television an interview with a terminal cancer patient.  One thing she said, which I have always tried to say but it never sounded so simple,  "When you are told you are dying you begin to live".  To take it further, each day is a blessing and a gift.  If it is spent with you children at the beach building cities or resting on the couch consider it a gift.  I am not going to regret my lack of energy this vacation.  I am going to make the best of what it was, a time for me.  I have a few days before I go into the hospital and I will wrap that time up with the boys. Please keep me and my attitude in your prayers.

Sunny

Thank you

Thank You, God, for little things that often come our way –

The things we take for granted

But don’t mention when we pray –

The unexpected courtesy, the thoughtful, kindly deed –

A hand reached out to help us in the time of sudden need –

Oh make us more aware, dear God, of little daily graces that come to us with “sweet surprise” from never dreamed of places.

Helen Steiner Rice

 I wanted to share this poem to all those who have reached out and touched my life.  A friend of mine sent me this poem and I had this need to share it with everyone.  I am feeling so thankful today and needed to let everyone who has been part of my journey in some way or another know that I truly appreciate everything.  I could not of expressed how blessed I feel any better.  Of course I am no Helen Steiner Rice.  

Just wanted to share,

Sunny

Ashamed

I spent the day today fighting with my insurance company because they refuse to cover a chemotherapy medicine because it is not FDA approved for carcinoid cancer.  However, there has been several hundred proven cases that this medicine has been very successful in shrinking carcinoid tumors in patient..... me included. I would go into the specifics about the med and the reasons HighMark gave me for not covering it but that is not the purpose of my post tonight. After battling for hours and being on hold for even more time then that, I became very frustrated and extremely miserable to everyone that crossed my path. As I was cleaning the kitchen mess from tonight's dinner all three boys came into the kitchen one at time asking me if I could help them study for a few tests that each one of them have tomorrow.  I of course said yes but really deep down dread sitting down all night studying Civics, Earth Science, Algebra, Advanced English, Social Studies and whatever else with three boys that know more then I do on these subjects. I started quietly complaining to Mark that my day was terrible and my night seems to be going on the same path.  I could feel the "Nasty Sunny" just climbing inside of me ready to burst out on someone.  I needed to "get my needs met" as Mark calls it but the only ones that deserve a "Sunny Smackdown" were the insurance "who knows" that declined my medicine. Truthfully I don't know where to find those people. 

Mark turned the stereo on in the house and turned it to this contemporary Christian station that I sometimes listen to when I am getting everyone out the door in the morning. I think he thought I needed a little God in me.  It's not the station of choose for my "rock n roll" boys but it has an hour of  inspirational stories on in the mornings that I like the boys to hear as they moan about getting up and going to school.  As I was slamming the dishes in the dishwasher for the third time today a woman called into the station asking for prayer.  The woman's neighbor had just lost her 15 year old son.  He was playing football and got hit in the chest during a tackle.  My heart just sank for her.  I literally stood there motionless for a minute or two. I don't know this woman or even what State she lives in but I felt this horrible heart ache come over me for her.  I almost wished I did know her so I could reach out and someway comfort her.  But truly nothing anyone can do will comfort her right now.  Having three teenage boys myself I could not imagine her pain.  Mark came into the kitchen and asked me if I heard the story on the radio.  By the look on my face he knew I heard it.

I feel so self-centered and self-absorbed.  I am so consumed sometimes with my own battle for life that I don't realize that so many others are hurting too. Sure I pray for people every night.  I have a list in my Bible by my bed of everyone that needs pray.  I pray for everyone on that list but I then go on about my problems. I know that we all do this so.... it's not just me.  I am just admitting it right now. However, I can not help to think right now does it matter to this woman that just lost her son, that the kitchen is a mess again for the third time in one day?  What she would do to study just one more time with her son?  So I spent the day fighting with my insurance company and losing the fight.  I had the day to do that.  Yes it may cost me more money or add to my bills but I have my life and most of all my sons.  I have never really thought of my self as selfish but maybe that's because selfish people don't really see themselves that way.  All I know is that I feel like hanging my head in shame.  I have no right to complain.  I may be fighting this battle of cancer but I have been so very blessed through the entire journey.

I never listen to the radio at that time of the day.  Usually when I am cleaning the kitchen..... wait I don't always clean the kitchen after dinner, the boys do that.  I don't want to say that it was a "shape up Sunny" sign from God but at that time it sure was what I needed.  There is always someone in this world that has things rougher then the next.  I am ashamed of my nastiness, but mostly of thinking that my problems are more important or more urgent then anyone else's problems.  I was complaining and whining about meds not covered, time wasted all day, studying with the best boys ever, cleaning a kitchen and who knows what else while there is a woman that is out there somewhere planning a funeral for her 15 year old son.  Ashamed I am. 

I think Mark thought he knew what I was thinking by the expression on my face.  He looked at me and said, "we are so lucky that our boys are with us right now".  That is not what I was thinking, however.  I was thinking, "I need the 'Sunny Smackdown' and I need to bow and thank God for this day.  No matter what happen".

Sunny

I gave it up

As many of you know Monday I had a CT scan of the liver to determine if the torture, chemo-embolization, I went through in August actually did something to the tumors in the liver.  Yesterday was my appointment with Dr. Tsung, who replaced Dr. Gamblim, where we look at the scans and talk about the next steps.  On Sunday night I really made up my mind that I would not let these next two days get the best of me.  I prayed about them and then truly put it in His hands.  You see I have never heard words from any of these doctors that there is positive and noticeable shrinkage in any of the tumors.  More times then I want to remember I have heard that the cancer is growing quicker then they would like or that new tumors are popping up everywhere.  I have gotten the sad eyes with  the hand on my shoulder and the doctor standing above me, because for some reason they think that standing above me when they are telling this bad news makes it real.  Not sure.  One time a few months after my second trip to Switzerland a doctor told me that he thinks he may see a little shrinkage but not enough to tell. I am not sure if he was just saying that because he wanted me to feel okay about putting all the money we had plus a second mortgage on the line to receive these treatments or if he thought there was some shrinkage.  Whatever the case it started growing shortly after that appointment.  I have also heard that the tumors have remained stable, only to hear a few months later they have been growing again. However, I have always kept hope that all these treatments and crazy drugs I am taking will do something.  Every appointment I go in ready to see smiles on the doctors faces when they enter the room instead of the usual practiced somber look.   

Yesterday, was that day.  Dr. Tsung came into my room with his usual entourage of nonspeaking med students beaming from ear to ear.  He hopped in his seat and began asking me details about how I am feeling.  I started telling him all my complaints, which frustrates the hell out of me because I have already went over it with three other white coat people, and he looked like he was going to burst and was really not listen to me.  So I finally said something like: lets just get to the results first and then I'll start complaining.  So he let it out like it was the first time he ever got to tell someone this, "It shrunk. The big one that I was worried about shrunk. It's almost half the size."  He is young for a specialist and my verdict is still out on him.  However I found his excitement quite cute and humbling.  I was in shock, even though I had hoped. I guess I just thought I would  not hear it this way. 

He continued on, in a much more professional and stellar manner, about how its only one that shrunk out of several several other very major tumors in my body so I cannot get my guard down or even take a break on the treatment.  I had to stop him because trust me I am never quitting and said, "let's just enjoy this moment doc." He laughed and in his accent shook his head and said, "YA YA WE ENJOY". 

We talked about my surgery in Dec. and my Jan. Houston treatment trip. He gave me the lecture about this does not mean you are out of the woods.  But I think he said, "OOODS".  But truly it all went over my head. I stood up and grabbed his shoulder this time and said, "listen something is working, even if its just a little.  Lets just enjoy that and not worry." I looked over a Mark who had tears rolling down his face.  His tears I have seen so many times lately but this time they were tears of relief and happiness.  Doc noticed too and said his good byes to leave us alone. Not much said at that moment except a quit, "it was all worth it."


This morning I had to take Nolan to the doctors.  On the ride to the office he starting talking about the results of yesterday.  He then said to me, "mom does this mean you are better?" . I told him no but it means that my fight is working and it just proves that nothing is impossible.  He then asked me if the other day when were all in the car did I listen to the words of  that song that was on the radio about imagining seeing God?  I told him that I loved that song.  He then said, "I've been thinking about that song for a couple of  days and thought that would be like you when you see God. Mom, you would be in awe and not be afraid".   Yes that is exactly how he said.  Of course I was speechless and he broke the silence with, "but it wont be for a while now".  He continued the conversation by asking if I remember when he and I were watching the sunrise and I told him that I was not afraid to die.  I do remember that and  I blogged about it.  He then softly added, "Mom that is why God answered my prayers on Sunday night.  He still needs you here for us.  He does not want you to want to go to heaven too soon.". All I could do is shake my head yes and turn the radio up.  Thankfully we were listening rock.

Truly the past four days, including today, shows the rollercoaster

Thank you for your prayers.

Sunny

By the way the Song he was talking about is "I Can Only Imagine", by MercyMe

I remember when

Tomorrow is liver scan day and we will know if the chemo-embolization that I went through a few months ago attacked the tumors in the liver. I am a few weeks behind on this scan because I was having insurance issues again and really did not need to add to my mountain of medical bills on my dinning room table.  It took me a few weeks to fight that blah blah blah of an insurance company but finally they agreed to pay.  It's great to have such wonderful doctors because as soon as I called them on Friday to tell them I won the insurance battle I was slid in for my scan first thing Monday morning.  Getting an appointment for a CT scan so quickly is  kinda unheard of now a days so I am truly lucky. Mark has a client meeting, that I refused to let him cancel, so I am going alone. 

As I plan for my day tomorrow I thought about how a year and a half ago going to a scan by myself was impossible for me. Never did I imagine I would ever be in a place that I was relaxed enough to take that on.  Although, according to a few doctors they would of bet I would not be here today to attempt it. A year ago I would start thinking about the scan two days before and then obsess over the results. I would beg and beg God for good results or even just keep things the way they were. Asking Him over and over again not to give me anymore because I was not sure I could handle it.  Then when I would get some not so positive news I would obsesses over what to do about it.  Today I went to the calendar to see what tomorrow would bring and there it was, written in pink highlighter because a pen was nowhere to be found when the doc called,  the word SCAN 10 AM.  I had completely forgotten about it and not once this whole weekend did I think of the "what if's".

I remember when everything was riding on the results of the scans.  It was if life stopped or took a pause from the time the scan was scheduled to the time I sat in the little room a few days later waiting to see the expression on the doctor's face.  It's not like that anymore.  Some might say its because I have been fighting for so long that I am use to it.  I have to disagree with that because you never get "Used To" living with cancer.  Others would say it's because I block it out.  I am not sure if I block it out or just don't let IT, the cancer, take over my life. I over heard someone who knows me well, or at least thinks they know me well, at the Miles for Smiles 5k that I am finally accepting my cancer.  Well I know that is not the case because I will never accept this monster or become content with it living inside of me. I know that whatever the results maybe I can handle it.  I may not be happy and even may shed a tear or two but because of the support I have I can deal with whatever it is the doctor tells me. 

Tuesday I have an appointment with my liver oncologist and the only thing I am worried about is making it home in time to get dinner on the table for the boys.  We have a hectic evening of sports and homework planned.  The thought of worrying about the "what if" it's growing still is the last thing on my mind. I refuse to give cancer that much credit. I am POSITIVE it's because I have faith that whatever it may be God will be with us.  Please keep me in prayers that I continue to have peace in whatever is to come.

Sunny

Decisions

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

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

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

 

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

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

Sunny

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

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

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

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

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

Sunny

Tomorrow

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

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

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

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

Sunny

10/10/10

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

September 19, 1996

Fourteen years ago today I experienced one of God's most amazing miracles, the birth of my oldest son.  I was told two years earlier that because of ovarian cancer, which later we find was actually carcinoid cancer, having children was completely out of the picture. I accepted that and went on with my life.  Every year since his birth on this day the very first thing I think of is the day I found out I was pregnant with Austen. I think it was the very first time that I truly believed that anything is possible. As I left my doctors office with the news I remember just sitting in my car, closing my eyes and thanking God for the chance to be a mother. At that time I promised Him that I would give all I have into raising the gift he gave me in his faith. I was raised with a strong faith and knew all about God.  I prayed and went to church every Sunday.  Went 12 years of catholic school and truly believed in God and all the rest I was taught.  But never before that day did I realizes how powerful HE really is.

The whole pregnancy I was in disbelief.  I don't think I really knew or wanted to imagine how wonderful my life would change when he was born.  I did everything the doc told me and more to stay healthy while I was carrying him.  However, I don't think I believed it was actually happening until I held him for the first time on September 19, 1996 at 7:58 P.M..  Mark was jumping up and down because it was a boy, my dad was thrilled that he had another grandson to add to his sports addicted family and I was just so in love with this perfect huge baby. Insistently I knew that this baby was my miracle from God.  He looked up at me with those big blue eyes as if to say, "I'm safe right here.".  I see that look every once and a while now and it brings me right back to that day.  It was truly one of those perfect Hallmark moments.

Since that day fourteen years ago my life has had many peaks and valley.  I have gone through more in those fourteen years then some will ever go through in a lifetime.  But one thing that remains constant is my will to be the best mother to all three of the miracles God has given me.  Some might say that my boys have been given a raw deal in life because they have a mom that has an incurable cancer.  But I believe that they are truly blessed that they have a mom that is so thankful for them that she realizes how blessed she is.  Sure their time with me may one day be cut short but I am determined to make everyday count to them when I am here.

When I hugged Austen this morning I did not want to let go.  Of course he hugged me back quickly and went on to the box of special birthday donuts I surprise him with every year.  The only surprise he would have is if I did not sneak to Oakmont Bakery at 6 am on his birthday.  I mentioned to him that the day he was born was one of the three happiest days of my life.  He smiled and then said, "it was the first of the three happiest day of your life".  I made a big fuss over how special this day is for him and all of us. Then I kissed him on the head (he was sitting down because he is several inches taller then me) and I started to walk out of the kitchen to let him eat in peace.  As I was walking by him he gave me that same look he gave me the first day of his life but added a big smile to it.  His smile reaches from ear to ear.  I knew then that he felt safe and happy no matter what cancer brings us.  Today was his birthday and that was all that matter.

Yes September 19th is Austen's very own special day, but it is my very own special day too.  It is the day that I opened my eyes to God's abilities.  It is the day that changed my life forever.

Sunny

Thunderstorm/Problems

"Don't tell God how big your problem is, tell your problem how big your GOD is."

Last night in Pittsburgh God gave us a laser show in the sky.  Along with that show came a loud concert of thunder and a cool down of rain. I love thunderstorms especially at night when you are snug in bed and the blankets are wrapped around you like a big hug.  I have this huge desire to open all the windows and just let the rain and wind come pouring in.  Mark would never approve of that though.  He would be yapping about the hardwood floors getting destroyed and the bugs coming in.  But one time I am just going to do it.  I am just going to let it all in and feel that cool breeze and strong wind.  It'll drive him crazy and probably piss him off but I am going to do it.  Why do we always run out of the rain or slam the windows shut so quickly?  What are we afraid of?  Some water or getting wet? I never understand why we must rush out of an actual storm instead of just awing in its grander? Why don't we just let it be and enjoy it? 

One at a time the boys came into the room to check on me and see if I had a flashlight for them. Mark was out and he is the one that knows were the flashlights are so I told them to just hang out until Dad got home.  They sat at the end of my bed and started wrestling around (yes in the dark) and chatting.  After they calmed down, Nolan began to talk about how cool it is when the lightening lights up the entire room.  The conversation started to turn towards how cool it is that God can make the whole sky light up. Okay, I turned the conversation.  Austen and Logan started to get that teenage boredom and uncomfortableness with the turn of the wrestling to a long talk so they started to walk out of the room.  That is when I just had to say to them, "you know sometimes we think that our problems are so big that it seems like nothing will fix them.  Then we see this amazing night and we realize that God is bigger then any situation or problem we could possibly have".  They gave me a quiet ya and off to bed they went.  Leaving their little brother behind to listen to the rest of the lecture.

Nolan and I just sat there quietly giving a wow each time we saw a strike of lightening.  I'm wondering if they got what I was saying or they just humored me when they answered me?  Whatever the case may be, someday that comment may come in handy for them.  I hope they remember last night and exactly when they heard it. I hope that they know that this is how I fought my battle....pure faith in HIM. I hope I planted the seed so if or when I am not around they can realize how amazing and powerful our God can be.  I hope they learned from that one simple sentence that nothing is impossible with faith.

Another Good In Cancer: the ability to see God's power in a simple thunderstorm.

"Don't tell God how big your problem is, tell your problem how big your GOD is."

Sunny

Accomplishment

First in this post I need to just YELL, THANK YOU!!! Thank you for all your prayers this week.  Thank you for just being a phone call away when Mark or I needed you all.  Thank you for all the help getting my boys prepared for school today.  Thank you for the emails, messages and texts showing me your support and love.

Its been a rough week.  The chemoembolization procedure to the liver went well with no complication.  I only had a short stay in the hospital and the kids did great with my mom at home.  She even told me they were good, that's huge.  The pain was there but I got through it.  The nausea and vomiting was normal.  It was just as expected.  But I did not handle it well.  I was frustrated and impatient.  Actually, I still am a little. I want to be well and back at things.  

However that is not why I posted today.  I am posting today because it is the first day of school again and I am here to see my boys go.  BC (before cancer) I use to hate the first day of school.  I loved having my boys home and had anxieties about sending them on a school bus packed with wild kids.  Not this year or the year before.  This year I cried tears of joy.  JOY that I am here to see them make it through one more milestone.  This last week, because of the embolization, I have been really sick and unable to get up with  them.  I have been in bed most of the week recovering and the smell of food has been enough to make me not want to get out of bed.  So last night I prayed really hard that God will give me the strength to at least be able to see them walk out the door.  Then I thought "that's not good enough", so I prayed for God to give me the strength to get them up and at least get some breakfast for them.  Then it came to me that I always tell the boys that ALL THINGS ARE POSSIBLE IF YOU HAVE FAITH IN GOD, so I prayed even louder that He give me strength to get up before them, wake them up with my traditional first day of school chant, make each one of them their favorite first day of school breakfast, take their photos at the same place I have for the past ten years, take them to the bus stop to photograph the neighborhood kids and wave goodbye.  I was asking a lot considering how I was feeling yesterday, but He can part seas and move mountains why not help a mom get out of bed.

So this morning at 4:30 am I opened my eyes to intense pain and nausea like I have everyday this week. However, today I got my little butt out of bad, forced some yogurt and IB Prophen down my throat.  I got a shower and waited by the alarm clock until it started blaring our favorite station to warn us its time for them to get up and the craziness to begin.  I was able to do it all, even cook.  I did it and did it well.  The hugs were stronger this year, after all Austen is reaching six foot.  The photos were more this year because the memories are more important.  I even got in a few not caring how I looked.  But what was really noticeably different is that my boys were confident, strong, and happy.  I know it was because they saw me be me.  So I had to keep the traditions going and shed some tears, but they were tears of pure JOY.  The were tears of pride and accomplishment.  Mostly though, they were tears of THANKS.  Thanks to God for all my answered prays.  Thanks to all my family who goes beyond lengths for me and my boys.  Thanks for my friends and community who have been stepping in to help. 


Today is going to be a great day, but I think I need a nap now.


Sunny

short but sweet.....well maybe not so sweet

So I am home from the hospital and UGH is all I can say.  The chemoembolizatioan went but we wont know if it worked for eight weeks.  I wish I could say it was a walk in the park but I don't want anyone to think I am some superwoman.  It sucks and I feel crappy.  Sorry for the yucky thoughts. Please keep me in your prayers.

On the bright side I am better then the first one I had a year and half ago.   

Sunny

Fear

Today I was to have my chemoembolization of my live. Because of insurance issue we had to reschedule it for Tuesday to make sure everything is paid for and covered.  So tomorrow I will go into the hospital for a day or two then home to recoup.  I am told that I may loose my hair but I was told that before and I only some chunks came out. The last three of these were quiet a challenge to get through.  So to give me peace to night I open up my Bible to Isaiah 41;10 "So do not fear, for I am with you: do not be dismayed, for I am you God.  I will strengthen you and help you: I will uphold you with my righteous right hand".

It is now Tuesday and I am waiting to be put under for my embolization but I had to blog.  I was thinking about last nights verse and I thought we all harbor secret fears.  I hide my cancer fear sees in the darkness in my heart and on days like today it comes out.  Those fears terrify me and the questions start rolling in my heard.  That is when I need to reach out to Him.  Only God can banish you fears from your heart altogether,.  The more you know the God who holds you the more you see that his power is greater than anything you will face.  His strength has no limit; his love for us has not end.  We need to know that deep down in our hearts that even if we are faced with the worse befalls ever God is on our side.  He is enough. 

Got to run its time for me to go under. 

Sunny

Take a Swing Against Caner

10/10/10.  Back by popular demand is the 3rd Annual Wiffle Ball Tournament.  This is a fun event that has raised tremendous awareness to Carcinoid Cancer. It has also help with some of the cost for several of treatments including my treatments and trips to Switzerland.  Most importantly it puts cancer in a positive light by bringing together people at an amazingly fun event. 

Details and registration information above.

Sunny

Stained-glass

"People are like stained-glass windows. They sparkle and shine when the sun is out, but when darkness sets in, their true beauty is revealed only if there is a
light from within."

I love this quote. When I read it I got to thinking: "what does it mean to have a light from within?". Just a thought.

Sunny

News

Well I got my cancer treatment game plan in order. Yesterday I went to my lead oncologist to coordinate all of my new treatments. I hate to write about all this stuff because it just seems so complicated and honestly quite boring. However, in the beginning this was my sole purpose of this blog but somehow it moved to so much more. Not to mention I want to let other carcinoid patients know what I am doing for treatment and hopefully it may help a few.

Anyways, Dr. Friedland my lead oncologist had everything laid out for me when I met with him. It was great that he is doing the thinking for me because quite frankly I am getting burned out with all my research. The game plan is as follows:

1. On August 23rd I will go into University of Pittsburgh/ Presby hospital to receive a chemo-embolization to the new tumor in the liver. I will stay a day or two and then recover at home.

2. Then three weeks later I will be receiving a new chemotherapy IV that has been quite successful in keeping carcinoid cancer stable.

3. I will also be consulting with a new doc in Houston about a treatment there. It is similar to what I have received in Europe but a watered down version. If that is a go it will start ASAP.

So there we have it, a game plan. It looks so good in writing. So organized and systematical. Although I know that it is subject to change depending on my body. Or maybe a miracle treatment may pop up in the meantime.

What I know that will not change is my faith and perseverance. I am determined more then ever to get this hell out of me. I don't want to learn to live with it and hang onto it. I want to be cured.

Sunny

A Big Hug

All I have to say is that there are so many amazing people in this world I wish I had arms long enough to reach around them all at one time. My last day to spend with Mark and the boys alone then back to the reality world we all live in. That world is not that bad either.

Sunny

Witness

It seems like forever since I have actually sat down and posted with my full heart. The last post was a struggle and my will to even sit down at the computer was taken away by the monster I am fighting. Since the last results from the scans that the cancer is growing again I have been struggling with its effects. Carcinoid Cancer is an endocrine cancer, so when it is in its metastasizing state it truly can take a hold of your entire body. The syndrome at full force can really take you out for awhile. The pain, along with the inability to keep any food down, the intense flushing and difficulty breathing truly makes you feel like you are the celebrity on Celebrity Rehab rather then a normal person fighting a incurable cancer. But I am not posting to go into the details of this devil. In fact, I don't like to give this cancer any credit for taking me down for a few weeks.

Truly, I feel this urgent need to share with everyone what I have witness over the past few weeks. Yes, I was at a low point with my disease. To spare the details, I was really sick. In that time I have had the most amazing out pour of help, encouragement, strength, and love. I have witness God's work at hand. I have seen that I am never alone and that at any time of the day or night I have this huge support system. I learned that at my lowest point with this cancer if I keep my faith in Him and give it to Him, He will bring people into my life to lift me up.

If it was an unexpected dinner, a drop by from a friend, or an email or card it was what I needed to get me through. Every time I prayed.....God worked. A friend taking me to treatment, my sisters listening to me cry on the phone, my mother staying with me to take over my motherly duties, Mark just listen to me complain and whine and a few friends taking the liberty to plan sometime for me to get away with my four boys are just to mention a few answers. However, through these weeks I have actually had some true heart to heart conversations with God. I have questioned and He answered. I asked him to take away my fears and I got peace. I even beg Him to take away some of the most horrific pain in my chest that I have ever felt and a few days and it had lessened to a tolerable rate. I had blood counts that were so low that my doctor took me off all my treatments only to have them up again in a few days.

I feel so blessed to be able to believe and have faith. I feel so blessed to have all of you who reached out to me. Thank you. I am taking the next four days to focus on Mark and the boys. I am so looking forward to just being a mom and not a cancer fighter. Please keep me in your prayers.

I must take some time in the next few days to update everyone on my new course of treatment. I am just in such a good place right know I don't want to think about it. I will catch up though because after all my blog's purpose help all of my carcinoid posse and share my treatment experience. Updates soon!

Sunny

Prayers

So as many of my readers have speculated my lack of blogs means things have been rough for me recently. A few weeks ago I got some news that the cancer is spreading again. Its been caught early but it is still growing. Since the news I have been having some issues. First my blood counts have drop, then the pain of the new tumors attacked me and now the carcinoid syndrome is active. I was taken off most of my treatments to bring my blood work back up and now I am just trying to stay a hold of things.

I know that this will past because I have been here before. I am just asking for pray now. I truly believe that when times are tough you need to quit feeling sorry for yourself and pray for someone else. That is what I am doing, I am praying for all my carcinoid posse and I am asking you all to pray for me. God knows that I give this time to Him. Please keep me in your daily prayers.

I'll keep you posted.

Sunny

SHE IS THE WARRIOR

With all due respect to Patty Symth and the rest of Scandal, my wife is the true warrior. Before anyone reading this panics as to why I (Mark--the quiet spouse) am writing this entry, it is not because she is too weak to think and type. In fact, today alone, she had two photo shoots, hit the food market, washed a few uniforms for Austen, observed Logans track practice, encouraged Nolan at guiatar lessons and that was all before noon. Actually it all was except for the second shoot and I forgot the oil change she did on her car. Right now those of you who know her real well are scratching your heads wondering when the heck did the warden's princess learn to change oil. I'll let you all to facebook about that.

No I am not filling in per her request, rather I asked if I could have the honor. Its purely a coincidence by the way that her last entry accurately portrayed my blubbering confession that contrary to her thoughts, I have not mastered the art of raising three boys and a fat dog alone. I can't picture our family without its rock, its anchor, without Sunny at the helm of this household ship. So I don't. Or maybe I can't allow myself to. I feel like if I do, then I am letting her down, because if she can fight and go on and on then who am I to not have faith and believe that she will whip this disease. Who am I to doubt? So I may learn how to properly rack ladles in the dishwasher, or how to correctly fold a pair of Aerospotale(I think thats the brand) boys shorts, and I may have expanded my culinary expertise to include foods other than eggs, cheese, pop-tarts, and pbj's....but I can never have the mother instincts to know when or where to put a little pick me up note in one of my boys pockets at just that time when he is down....or how make the big guys favorite desserts(heck even to tell you what their favorite desserts are)...or how to make sure that they know you can never quit when things get tough. Those are all things that Sunny does. She has set the bar high.

No, I asked to write this entry because it has been a crazy week and I know she won't admit it outside of this house, but she is tired. Tired from the cancer physically and in a moment of frustration, tired mentally from the ongoing fight. But she knows she won't stop. Quit is a four letter word that gets you decent points in scrabble but doesn't exist in her world. Her bloodwork is all messed up but she goes on. I don't know how she does it, her doctor's call her an inspiration, but all she wants is to hear her boys call her mom.

Its fitting that this week began on Sunday with a surprise 80th birthday party for her mother. It was a themed party, the 1930's, and Sunny made sure our boys had the perfect costumes, that she looked just right as a voluptous siren, and that I didn't bust through the buttons on my vest. She met with Vicki(fellow outlaw and nightowl) numerous times to work out details, hauled extra gear from her studio for those without, packed and set up her photo equipment, and then proceeded to take "period" photos for most of Sunday afternoon. Amazing. Stopped to eat a carrot. And maybe a fat-free cookie. With a bloodcount that was so low Keith Richards wouldn't have traded. She had the best time, the best attitude, and knowing it meant it a lot to her mother, she would do it again this Sunday if asked.

Then on Wednesday we had an early breakfast and a lunch date sandwiched around a visit to the Shadyside Spa and Cancer Center where she got "radioactive", a no pain no gain scan (although in the new machine which cut some time), and almost got another lovely Quadramet treatment(come back to the almost if you stay tuned). I don't mean to seem flippant in referring to our day in this way, but I know she will echo that even know it was going to be a long day, we were both in good spirits, making jokes, almost drunk with giddiness that only comes when you have no other way to handle a particuliar situation. After surgeries, treatments, trips to Basel, Iowa, Tampa and so many trips to UPMC Shadyside that we are officially the Garmin voice for the campus, we both knew that the day would suck, but there wasn't an option B. Sunny really lived up to her adage "that cancer does not define who she is". For those that know me well , if I didn't make her laugh and address the drive over with humor, I would have been blubberin as if I was stuck watching a perpetual rewind of the ending of "Its A Wonderful Life".

So she gets "radioactive" and we have to come back in two hours. She jokes about going shopping at various WalGreens, Rite Aid's etc. and tripping the metal detectors. We eat....well she nibbles and I eat one and a half breakfast's at Pamela's. (besides humor, eating is good medicine) We shop. She shops. Don't think she bought more than a chutzky bracelet 95% off and a pair of discounted sunglasses which she immediately hated when she walked outside. I don't know....it was just being in the store, talking to the owner (Roberta Wilson Leather I think) who was real sweet and spending time doing something she would have done pre-cancer.

We get back so she can finish the scan and get the Quadramet. After 40 minutes or so she comes out in a huff and tells me that the doctor wants to talk to both of us, that something had shown up in the pictures. We get back to the "Dosage Administration" room, which I swear also doubles as the locker/lunch storage area/blanket heating room/ and apparently "Mabel" from AT&T central station. Thanks to the wonderful staff in that dept, who always take great care of Sunny, and who follow this blog. No doctor though. We had met this doctor before....kind of like Mr. McFeely from the Rogers neighborhood crossed with Andy Taylor's physician from
Mayberry. Not to judge people by what they wear, but when the doctor who holds the keys to your treatment and is the expert as to dosage and timing of concurrent treatments is dressed like Larry from Three's Company with Mr. Furleigh's physigue and mannerisms neither one of us were overcome with confidence. After handing out a few employee lunchboxes(two ER's, one Scrubs, and one eco-plastic bag bursting with tofu yogurt, after making sure Sunny had the warmest towel the "towel warmer refrigerator thing-a-mi-jiggy held, after answering aforementioned phone which rang periodically "Espere un momento por favor" (these weren't stat calls relax....it was jerod wanting his lunch microwaved....) after being offered and declining the latest in hospital magazing reading several times by the aforementioned great staff(there are only so many Southern Living issues from 2006 you can absorb in one day) and after several quick drop in's by the frazzled Dr. McFeely Tripper Furleigh which were more confusing than not knowing what was going on at all, Sunny was ready for a smackdown. She had told them on Monday and Tuesday that her blood count was low....on the border to be able to safely get the Quadramet...they told her don't worry....drop on by....stay a while....you hear....all I could hear was her MFing the system....that since the drug was ordered upmc got paid...she was wasting a whole day with her kids....she had told them to reschedule....but as is the number one answer to the "Family Feud" question what is the biggest bane cancer patients have with their medical team....."NO ONE LISTENS TO WHAT I TELL THEM"....amen....nuff said....

When Dr. HENEEDSAHUG came back in to finally tell us that it would be best to reschedule the Quadramet I ducked. I thought for sure he was getting dropped right there and then. I hoped his dental plan was good. But Sunny was in a way relieved to put it off....after all of the confusion I think she (and I silently) both thought it be best to wait to make sure if her count would come up and she could safely get the treatment. Though I poke fun and think the whole 90 minutes to sort it out was ridiculious(hey Barack, can the new plan get phones in treatment areas that don't apparently crash weekly) we both appreciated his concurring to error on the side of conservativism and reschedule.

Now as we left I knew Sunny was one hand relieved and yet was angry. Understandably, she hates to waste time she could spend with her kids. And as much as I told her, at least we got the scan done , she wasn't buying what I was selling. In the back of my mind I knew someone was going to get her going and get the "Sunny Smackdown". At Giant Eagle on the way home to pick up fruit and drinks , a rude uppity woman in the self checkout lane in front of us stepped up to the smackdown plate. Now before some of you get the wrong idea about Sunny, keep in mind she was in pain from the scan and radiation, didn't get the pain treatment, had missed her kids cross country practice, stayed home the previous night from her oldest baby's hoop game, had a sore mouth side effect thing going, had gone way past exhaustion, and then she had to hear so overdolled up wannabe cougar who was literally bagging each of her items individually and then had the bright idea to "advise" Sunny as to how to set groceries on the little food treadmill thing. Boiling point. I jumped in the middle and just started bagging. Lets just say the woman bagged her remaining bags quickly and probably will never ever use the self-checkout line in this lifetime. Sunny needed to vent. She relaxed. Those of you that have ever been in a longterm stressful situation will relate. In fairness to Sunny, this rude bitch had it coming.

I was thinking this entry through this afternoon, I flipped through the bible and came across 2nd Timothy. Another one of the letters Paul wrote. It struck me , and I didn't plan on opening it or landing there. As our Pastor says, "you go nowhere by accident." Paul wrote that we are to be as the Serving soldiers, the competing athletes, and the hardworking farmer's....we are to focus on our leader....to be singleminded and driven, that we are to compete....to try...we can't sit on the sidelines and we have to do it the right way....and that we are to work hard so as in order to receive the first rewards of our efforts....This struck me as how Sunny lives every day....she is focused on being the same as she was prior to cancer, she is competing for her life, and yet she works as hard as anyone to keep things normal....to keep on keeping on...

She has complete faith...the inner assurance that no matter what happens she will get her reward....and she backs that up with actions....she does it....she doesn't just say it....anyone can say they trust God or they won't get beatdown by cancer.....Sunny goes that step further and lives like she is beatingdown the cancer in her....no doubts...burning the ships....she is my rock ...she is the cookie on my creamfilling in this OREO of life and I am truly honored to not just write this blog but to be with her on this incredible journey....

Mark Carney

Every time I go to post in this blog I scroll down the page to log in with my secret password. As I scroll down that front page I see the picture of Mark and I taken a few days before I lost my hair, I see the letter that Mark poured out of his heart to describe me, I see me holding the hands of my three babies who in the last two years have grown twice that size, with that photo I see the word I have written a thousand times through this journey - BELIEVE. I then scroll a bit more and I see me and my beautiful four boys all around me hugging me and leaning on me because they need me. That sounds quite assuming but its what keeps me going. Yesterday after my appointment (read below) I said to Mark, "maybe the time is coming now? The boys are almost teenagers and in a few years they will be in High School. They are yours now. I did what I needed to do when they were young and now you, Mark are who they need." Mark looked at me with tears streaming down his face and said, " I have no idea what to do with them. I have no F@#$ing idea how to be the Dad that you have led me to be. I cannot do it without you. I am clueless."

I felt horrible that he felt this way. The last two years I have had this urgent need to teach him and the boys everything they need to know if my day comes. I have a box of letters written for them for certain situations. I have done the fast track of parenting so that the boys and Mark will be fine without me. However, what I realized by Mark's statement is that I have not planted the confidence in him that he needs to continue raising my boys after my journey with cancer is over. So yes he still needs me. So this road block needs to be hurdled over. This cannot be it......I need to find another treatment and fast.

Sunny

Results, results, results

Last Tuesday I had a total body PET/CT scan. Today I had my appointment with my oncologist to go over my scan results. From the moment Dr. Friedland walked into the exam room I could see in eyes that things were not so good. I gave him my big hello and large smile; I guess thinking that maybe if I turn up the charm he would use that magical power I think he has to change the news he hated so much to tell me. We had a few seconds of small talk, once again I was trying to avoid him announcing what was in that folder he was holding so tightly. Finally he just cut right to it. The cancer is going quickly again.

There are new tumors in the bones on my left side and my chest area. However, the most concerning part it the growth of the tumors in my liver and several new ones popping up as well. I wish I had more information to tell you but what I do know is that Dr. Friedland and myself need to come up with a new game plan on how to fight. I have several appointments with specialists, one with my liver oncologist and hopefully by the end of the week I will have some answers. Until then I am going to do what I always do and appreciate everyday.

Please keep me in your prayers.

Sunny

Peace

God always knows when you need a little inspiration and lately he has been putting people in my life to give me the push I needed. My posts have been getting less and less lately. I don't know if it's because my boys are home from school and my life is all about running them from place to place. My nonprofit division of "Sunny's Photos" has been growing extremely quickly and that only means more people being effected by cancer, so that has been a little upsetting. Or perhaps its because my cancer life has been going crazy and I really am trying to block it out. It may just be the stress of all the insurance issues and financial uncertainties. Whatever the reason or excuse I am giving I have totally lost my way.

Although I have been trying extremely hard to ignore the signs God has truly been knocking on my inspiration door, He makes it impossible and once again reminds me I cannot do this journey alone. In the past few weeks I have had the most unusual inspiring people reach out to me. Without going into all the details I have been approached in the most unusual places, have had emails written to me and even have gotten a few phone calls from others that have inspired me to keep going with my battle but mostly keep updating and writing my blog. So tonight that is what I am going to do. I am going to update everyone on my battle, continue to get the word out about this rare cancer and try to help others know that they are not alone in whatever battle they are going through.


Tomorrow I will be under going another PET scan. I am not due for my regular scheduled progress scan for another month and 1/2 but I have had some unusual changes in my conditions so my oncologist decided to up that time to see what's going on. Yesterday a friend of my asked me if I was nervous about the scan or the results. When I told her that I really don't think about scans or results anymore she was completely surprised. Later that day when I was driving home from my hour and half ride from my Austen's baseball game my mind went back to my conversation with my girlfriend. I began to think that maybe its not normal for me not to have anxiety about my scans, my results or even my cancer. I questioned my honesty to others and myself and wondered if deep down am I just trying to pretend that I am NOT worried. After thinking hard and almost forcing myself to feel some type of solicitude I was quite sure I am not worried about any of it.

Not being afraid of my cancer, my scan tomorrow or the results of the scan does not mean I don't care about my battle. Trust me I care more then I care about anything, because this disease effects everyone I love.....not just me. However, I truly have in the Lord's peace. I am not saying that this peace I am feeling means that I believe that tomorrow scans are going to show no growth or even no cancer. Nor do I believe that I am going to be miraculously cured by one splash of blessed holy water or the hands of some Evangelist that claims to have the power of healing. However, I do strongly believe that if that is what God wants that to happen then it will. My peace is that God will not leave me and what the outcome may be my faith will get me through. I know that through the power of pray and with a true open heart to the Holy Spirit I can get through whatever the results bring. Now, am I hoping for the best? HELL YA, but I have true have peace.

I have seen first hand some amazing things happening because of my journey. I have seen great change in my life and in my families life. As I stated several times in my blog if I could have one wish it would be to take this cancer away from me. However, the past two years of my battle have been the most meaningful and life changing experience for all those I love I would never give them back. They have taught me what having true faith in God and giving all my adversity to him feels like. That is where my peace comes from.

So tomorrow when I lay in that tube for a few hours with an IV in my arm I am going to spend that time in peace and thanking God for that peace.

Sunny

Keep the faith

I think my last post pleading for help with my insurance issues has diffently opened some doors for me. I have been in touch with the right people and I am praying that they can lead me in the right direction. Thank you all for reaching out. I will keep you all posted.

The last couple of weeks have been very difficult for me physically. I am assuming the cancer is growing again because of how I have been feeling. I scheduled scans for the end of June so I will know what's going on then. In the meantime, I need to stay strong in faith. This neuroendrocrine cancer is so strange. At one point it seems to be taking over my whole body and the pain is so incredible I can bearly stand it. I become dizzy and sick to my stomach like its the worse flu you could ever imagine. Then a few days later I am feeling great. I have talked to my oncologist about these happenings but he really has no answers because its such a rare and difficult cancer. So I joke with him and tell him to take notes so that when his other carcinoid patients tell him the same thing he can assure them its normal.

The last couple of weeks have been much like this. I have been feeling like crap for a few days and then I feel better. Friday, for example, I started to feel a little under the weather. I had blood work done and my counts where off. I continued to do what I always do to get on with life and then Friday evening it hit me. The pain was so intense that I could hardly focus. I kept Mark up most of the night with him feeling so helpless trying everything he could think of just to help me fall asleep. Saturday I had a wedding that I was contracted to photograph and up until I got to the bride's home I was completely unsure I could get through it. But through God's will and many prayers I spent eight hours Saturday popping pain meds and photographing a beautiful event. Of course Sunday I was a complete mess. Still in horrible pain and sick from the pain meds that don't work anyways. I knew at that point that my prayers need help, so I asked my facebook friends to pray for me. The response was amazing.

After another sleepless night last night I am starting to feel my way on the upswing. I am not completely feeling 100%, I am not sure I even know what feeling 100% feels like, but I know that because of my faith and prayers from others I am getting through this journey. I had someone say to me the other day that they don't believe that there is a GOD. I love this person but felt so sorry for them. I don't know how you can look around this amazing world and not believe in The Big Guy Above. I don't know how someone whose been with me through this battle can not see what God has done in my life dispite this cancer. I want to thank everyone who reads my blog and have reached out to me. I am so blessed to have you all in my corner. I know that in a few days I will be the "Sunny" you all know. Keep praying and please keep believing.

Sunny

Insurance

Well nothing in life worth living for is easy. Fighting cancer is so much more then just fighting the demon that is inside of me. The frustration that goes with the disease is overwhelming at times. This week Mark and I was hit with the reality that as of July 31st our whole family will be losing our health insurance. Sixteen months ago Mark and the company he was with for sixteen years decided to part ways. Mark was pursuing a different career track and with my diagnosis it was the perfect time to do so. So with that departure and his new career path we had no other choice but to go onto COBRA insurance. It was extremely expensive but we made do and it was health insurance not perfect because several of my treatment were not covered but insurance to say the least. We were guaranteed coverage for 18 months and July 31st that 18 months will be up.

This week I started looking into other options and I am overwhelmed by the whole process. After hours and hours on the Internet and more hours on the phone I am tired of the doors that are being slammed on me and my family. With private insurance cost outrageous and almost impossible for us to afford and non private have so many bizarre circumstances that I don't think we will qualify I am at a lost at what to do. I spoke with our Senators office today and was told to apply for government insurance however when I called to get information on it I was told that I was not qualified and my children will have to go uninsured for four to six weeks before they will start the process.

Through this whole cancer journey I have never felt so defeated. I have been told that I had six months to live, told that my only hope for any chance to extend my life was crazy European treatments, undergone several experimental treatments and procedures, have hundreds and thousands of dollars in medical bills and I would stand on my head for a month if they told me it would help destroy this cancer growing inside of me. I have undergone horrific treatments that has got me so sick as well as put me through horrible pain and have not had positive results. Scan after scan after scan with results never on my side and I have always found hope in this hopeless situation. Nothing has made me feel that I am losing this battle until today. I just feel so overwhelmed with all this insurance bullshit and scared that I have no options. I am asking for all you who follow my blog to please rich deep down and pray for me and my family. I know that if I leave this problem in God's hands he will take care of it. However, for the first time in this long cancer voyage I am struggle with that because I am scared.

Please keep me in your prays this week that this will all work out. I am also open to any knowledge that anyone can share with me regarding insurance options.

“Prayer is the key to Heaven, but faith unlocks the door.” I've been praying and praying... Now I'm trying to keep the faith that everythying will work out.

Sunny

This post is well overdue. I know it's been three weeks since my last published post. I have written several entries but truly felt they were too deep and personal to share. I have been receiving email after email asking me if all is okay. To be honest it's been a really rough month physically. I know that I need to catch everyone up on my scans, the findings and my treatments but if I don't share with you my Friday morning I may just burst. Today I was hit with the reality of why I fight this cancer battle.

The last week has been a bitter sweet week for me. Tuesday I had a double treatment which has been really tearing me apart physically. The boys are ending another school year which has been tearing me up emotionally. I love my summers home with them in fact I love them home any time with me. Also, I am thrilled that I am here to see my boys move on to another year in school because after my diagnosis I was told that I would never see these days. Mostly I am so proud of each one them and the accomplishments they have made this school year. But like any mother, with or without cancer, I am sad that my babies are moving closer to not needing me anymore. They are one year older and one year smarter. Soon they will not need me to study with them or help them with that ridiculously difficult project that no child does ALL BY HIMSELF. Each year they are growing more independent and self sufficient. The need for "MOM" is quickly going away and the need for friends is replacing me. The little blue eyed freckle face boys are now growing up to be handsome teenagers with girls following behind them. Their hugs that use to knock me over are becoming more of a light quick tap from a boy that is taller then me now. Bitter sweet in so many ways.

However on Friday my two youngest participated in a school talent show and it reminded me how I can still share in their joy without always being needed. They are officially musician now with Logan banging on drums and Nolan jamming on his electric guitar, sometimes Austen joins in on drums and keyboard. After this last diagnosis and the grim news that the doctors told me of my destiny, I joined them up for lessons so that they would have something they can do that will bring them together if I was not here to force it. Never in my wildest dreams though did I ever imagine that they would actually sound amazing enough in a year in a half to preform together in front of almost 500 of their peers. All I can add is that they rocked the house with the children chanting more more more. They ended up playing four songs with Logan flipping his drum sticks and spinning on his stool and Nolan playing behind his back and sliding across the floor. As Mark and I sat in the back of the school auditorium holding hands we both had tears rolling down our face and for once my husband was completely speechless. The pride in Mark's eyes was worth a million dollars to me.

As I stood in the back listening to their final rendition of "Born to be Wild" and watching the front of the stage covered with their classmates dancing and chanting their names I realized what cancer has done for our family. I felt reconfirmed that my fight may not 100% be for Mark and the boys anymore because they are going to be okay now without me. But that this battle I am is now for ME. I cannot miss my children's accomplishments as they go through their life. I have worked so hard to make these wild boys into amazing teenagers and it is now my time to sit back and enjoy me good work. The whole day I felt like I was walking on a cloud. Those boys that sat on our couch a year and a half ago clinging to me with rolling tears down their baby faces as we told them "THE NEWS" of mommies illness are fine now. They are strong and ready to tackle the world with me just slightly leading them in the right direction. They overcame my cancer and actually learned from my battle. They will be okay when the day comes.

Me on the hand, needs to be here to see them experience the grandest of life. I need to see their smiles so big that their faces hurt. Cancer has taught us that days like Friday is a battle won as we fight this war. This again is the "Good in Cancer". My boys have learned that if they give something their all and not quit on your dreams they can accomplish anything. But more importantly they have learned to lean on each other and work together. I understand that a song does not work with out all the instruments and a family does not work without each other. That night Nolan came up to me and said, "Mom, thanks for getting me lessons. I know that it is expensive and you worry about paying for them......but thanks." They are starting to get that living is more then just having a life......living is making the most of that life.

Sorry for the delay in post and I promise you this week I will catch everyone up on my "Cancer" battle. I really just had to share the "Good in Cancer" to remind myself that quitting is not an option.

Sunny

What is true faith?

Never place a period where God has placed a comma.

Mark sent me an email today (yes we both have home offices but we still communicate through technology. Sad but true, with only one floor between us texting and email is our main way of talking during the day. We sometimes may pick up our cells and actual call each other but that is only when our fingers are tired). I opened the attachment and read the above. "Interesting"....what does he mean about this? Surely I have not quit on anything or given up. Or have I?

A few hours later after a long morning of work for both of us, Mark came into my office and asked if I got his email. "Of course I got it", I said in my irritated tone. He then said to me, "sounds like something you would say", and he walked out and closed my door.

The rest of the day I could not stop thinking about the email. It is something I would say, but I can not help wonder if I really live this way? There are times where I think about when. When is God going to put my number on his list? How old will my boys be? Will Mark be ready to take over? Will they know that I love them and that is why I fought so hard?

I seem to have been spending the last year and half getting Mark and the boys prepared to live without me. Of course I don't let them in on my fast track for them to learn everything I would have taught them over 20+ years. The changes my family has gone through is huge. Mark can cook three things now, I hesitate to call it a meal yet: Daddy eggs, grilled cheese sandwiches and something they call gramen burgers (only to be eaten when it's a bro night and mom's not around). I showed him which one of the two big white machines in our basement needs soap, only because detergent in a dryer was a huge mess I had waiting for me after a long hospital stay. He now knows were the boys schools are located. He is even learning that when the boys say they don't have homework it really means they don't feel like doing their homework. Although, the biggest change I have noticed is that my baby boys go to dad more when they need ride somewhere or money. Before my "preparation plan" they would walk right passed him, if he was even home, as if he was invisible and hunt me down for anything they would need. He could be standing in the kitchen with the milk jug in his hand and they would search the entire house to ask me for a glass of milk.

With all of that said, I wonder if I am a hypocrite. Did I put a period on my life? I claim that I have hope, but I know that my cancer has no cure. I know that eventually my life will end because of this disease. The thing that makes me sad is that I have accepted my destiny. It's all a matter of time, so I take everyday as a gift. Sounds great but is that try faith?

Sunny