Today!

It's a good day because I am part of it. I made it to 39.

Sunny

School Days, School Days, Good Old School Days

Tuesday came. The day I was dreading all summer. The first day of school.

It became a bitter sweet day for me. On one hand I was so sad to see my babies leave on that school bus. I love the summer with them. Especially now that they are older and the days consist of more fun then work. I was determined to make this summer all about our family. I only had mild treatments so that I was not to ill to do all the fun events I had planned. My doctors were not to happy about this but for a few months I decided to choose quality of life over quantity. When I was under the weather I just kept telling myself, "it's for them... SUCK IT UP!". I also made it my mission to have my boys become closer then ever to each other. I know that they wanted some separation at times, which I gave them once in awhile, but as a mother I know that soon they will need each other. So I made them have fun together. Yes made them!!!! There were times when play dates were cut short or we missed a few picnics. I am sorry for that, but this summer I had to make about just the five of us. We slowed down on sports and still were running 5 to 6 days a week with that. We only did a few camps. We did not renew our pool membership. We just hung together.

I also found ways to back off and have Mark do some of the parenting. He was all for that, but it drove me crazy to lose that control at times. However, I noticed by the end of the summer the boys where going to him more often for help, rides, schedules or questions. It has always been that they would walk right by him to find me to ask were something was, for food or drink, ride to a friends or practice, or just to talk. I use to think that Mark was just invisible to them and only could be seen when it's time for fun or of course money. Actually, that would work for me at times too. Of course I'm joking. I don't want the lecture from him that he did not like that comment on the blog....blah, blah, blah.

I am hoping that they had a great summer despite what they are going through. I know that is why it was hard this year to see them off to school. It feels safe to me, and them, when we are together. Some may say I am being greedy, but I wish I could just keep them by me forever.

On the other hand, I feel a sense of relief and accomplishment. Relief that they are now a year older and I am still here. Still here to teach them and be with them. I have this urgent need to teach them everything they need to know to be a great asset to society. Things that I would once say, "I'll let go until later" are now important. I know that later is now today. I try hard to be subtle about it but they know that I put them on a fastpass to acceptable behavior and believe in yourself. It's not about having them grow up quickly or anything, it's about teaching them all I need to before it's to late. Teaching them how to love each other unconditional, how to look on the bright side of life, how to treat others with respect, how to respect yourself. I try to instill faith in God, faith in yourself, faith in your family and faith in those around you. I am determined to have them be the best they can be and follow their dreams despite the difficult ride they are currently on. Sometimes they tell me to stop preaching or lecturing so I lay back a little. But usually they are listening and watching. Watching because I believe my example of living is far more potent then any speech I can give them.

I felt accomplished because they seem to be understanding more what life is all about. Sure they still have lists of what they want. But on the top of the list now instead of PS3 games or sports equipment there are things like: more time with my dad...my mom to get healthy....my neighbor to have you foot feel better.....more time with my grandmother or their uncle. Things that you can not buy. Things that make a difference in living a full life.

They did fine and I cried for a little bit. Isn't that what life is all about. I feel so blessed I am able to see them go to the first day of school one more year.

Sunny

Wade

Below is an email that was sent to me and I need to share it with everyone. I have been corresponding with this family for a few months and am sadden by the news. I rarely like to post depressing or sad news but my heart is leading me to do this for several reasons.

First, I want to stress the need for more research and education to be dedicated to Carcinoid Cancer. Time and time again when I speak to doctors, foundation and even government officials I am told that this is such a rare cancer that money has to be spent on the more "popular" cancers. Like for any reason we need to describe any cancer as popular. Secondly, I would like to correct the misconception that Carcinoid Cancer is slow going and patients can live for many years with this type of cancer. That may be true for some stages of this cancer, just like breast, lung, liver etc., but in many cases that is not true. I get really frustrated when I hear someone, either a doctor, patient, or just a well intentioned person say, "if you have to get cancer this is the one to get." You can live for up to 5 years with Carcinoid Cancer before it takes your life. Tell that to the family of a 58 year old man who dreams of his future with his wife and first grandchild. Or tell that to my boys who in 5 years from my reoccurance they will be 16, 15, and 14. Tell that to Mark when he is a single father or to the doctor who told me to get my affairs in order because it will take a few months before "it" gets to bad. Next, I want to show that there are many stories that are just as heart aching as mine. Different situations, but just as tragic.

Lastly, I want to pay honor a man who was loved so dearly by his wife that she dedicated her life to him. I man after sending 2 boys to college had planned to retire soon and spend time just being a husband and a grandfather with complete satisfaction. To a man that raised his children to be caring individual which is proven by their career choices as a teacher and nurse. This man fought with all he could against his disease so that he would be around for his first grandson which is due in 4 weeks. Some may say he is just an ordinary man because he was not a famous movie star, well known athlete, well liked professor, famous politician or Nobel Prize winner who died from cancer. But to his wife, two sons, daughter-in-law, soon to be grandson, or anyone else whose life he touched he is a hero. A man that lived with courage and strength. A man that did not give in to this horrific cancer and fought with all he had to the very end. After suffering everyday from this cancer I can rightfully say he is a true hero. Good bye to one of my Carcinoid Posse.

Hi Sunny,

It took me awhile to write you, but felt I needed to, because you have been an inspiration to my husband since he was diagnosed last November.

Unfortunately Wade passed away August 6th, he had undergone only 3 embolization treatments since the beginning, and I did take him to UPMC for a 2nd opinion with Dr. Gamblin. Every CT scan he had was worse than the previous, they finally determined the treatments were not working. His initail CT scan 9 months ago was bad, showed "far advanced metastatic lesions to spleen and liver, too numerous to count, so I really feel this was way too advanced when it was first diagnosed, although those doctors always gave him hope. Wade was 58, his obituary is on the Boylan Funeral Home website(Zelienople, PA) if you ever want to read it. He was a wonderful husband and father. I mentioned the type of cancer in the obituary, because I want to bring this very underdiagnosed, under detected cancer to everyone's attention. He fought til the end, and never gave up hope. You need to keep up the fight, and getting the word out on this type of cancer is so important. We never got anywhere else for any other opinions, because Wade was too sick. I just wish they would have discovered this so much sooner, so he would've had a better chance of survival.

I will continue to pray for you and cheer you on to good health. Right now I have to stay off all the cancer websites, its too painful because I miss Wade so much. As I said, I hesitated to write you, because I too hate to mention the "d" word, but I thought I should tell you, because he admired your courage, and he followed your blog faithfully.

God Bless,

Trudy Levere

"The steeper the mountain, the harder the climb, the better the view from the finishing line."

I needed to recite this quote many times this week. It's been a rough week for me and my journey. My oncologist decided to double my monthly treatment and shorten the length in between from every 30 days to every 21 days. Before going to my treatment last week, I convinced Mark to stop at Oakmont Bakery (best bakery in Eastern Pennsylvania for all those not formaliar) and to purchase some tasty treats for all the nurses. I believe I was subconciously thinking that maybe if I bribe them then they will go easy on the treatments, like they have any control of that anyways. But I told myself out loud it was because they are so kind to me and they deserve to know I appreciate them. What ever my intentions where it did not work. However, I was not prepared for how horrible I would be feeling. I am on the upswing now and ready to look at the view soon. Although my blood work is still not as high the doctors would like it to be. So sorry for the delay in posts.

This quote was sent to me by a wife of a fellow carcinoid patient. Through my blog I have met and corresponded with several carcinoid patient or their loved ones. I have learned that each and every patient is suffering from the same cancer and struggling with the fact that it is incurable and eventually will end their life. Although, we have this cancer in common each story is unique. Some have been misdiagnosed at first, some are at early stages, some are at the end, some are struggling with the emotional hardship, some are struggling with the financial hardship, some have families, others are single, some have amazing doctors, others are frustrated with the little knowledge that is out there about this cancer, whatever the situation is each one is climbing probably the steepest mountain they will ever climb. The question that I know is being asked by each of us is, "Where is the finish line with the great view?".

I, like many others suffering from a termenal illness, need to know what is the definition of a finish line. Is it getting through a treatment? Is it finding a miracle pill to help you with the side effects of this cancer? Is it being able to just have a good day without having the disease take over? Is it finding a cure? Or is it death? I like to believe it's all the aboved mentioned. There are times when I see the beauty of the view when I am on the recovery from treatment. The feeling is amazing when you realized you made it through those weeks of misery. There are moments when I reach for a pill or a heated pad just to get some relief and then later realize it worked. There are days that I lay my head down at night and thank God for having a day that cancer does not rule it. Those days are more beautiful then any view I have seen or could ever imagine. Of course finding a cure would be one of the most amazing finish lines to my journey. And if it is death, then my faith has led me to believe that the view from that finish line is beyond anything I could concieve.

What I am trying to express is that going through termanal cancer you will experience many finish lines with amazing views if you define them as you like. Sure death is always in the back of your mind. In fact every minute of every day we are fighting to avoid it. So how can the mind not go to that thought when we talk about finish lines? But it is not the only glorious view if you alow yourself to see the other accomplishments while battling to avoid the final finish line.

So I said the "death" word. The word that no one dares to say to someone in my situation. I will address that word in a later post, but for now I will assure you that I will do all I can to stay away from that finish line. However, when that time is here I am not afraid.

"The steeper the mountain, the harder the harder the climb, the better the view from the finishing line".

Sunny

Sadness

Sorry for the delay in posts. Thanks for the emails my concerned friends, I was a little under the weather but I am feeling good today.

I had to post today not for me but for all my friends that are going through some hard times. It seems like the past two weeks I have had so many of my good friends just sad. Not for one particular reason all together but they all seem to be going through something. One friend just had surgery and recovery is slow, one has a broken foot that stubbornly will not heal, one has family issues, one has a dear friend that is ill, one has a child that is ill, one misses a loved one that has past, one husband lost his job, one lost her job, one just found out the she is ill and has to live with this condition forever, one has financial struggles, one just feels horrible and does not know why, a few have all the above and the list continues. After each and every conversation I have with them they ended by saying some form of I can't believe I am burden you with all you have going on. Or I am told that when they start to feel sorry for themselves they think of how positive I am and then they try to snap out of it. Some even ask how I get through each day being so sick and having so many worries. But the one comment that really hits me is that my problems seem so small compared to what you and your family is going through how can I complain.

My answer to that statement is no problem is small if it is something that makes you feel sad or worried. I want my friends to know that I am here for them like they are for me and that I never think of them as being a complainer. I never judge or compare their problems with mine. A person that does that is not a true friend. I am honored that they feel they can come to me and let it all out. I only wish I could help them like they have helped me. I wish I could take their pain away. Please don't feel that because I am going through this journey that I don't feel your pain. That is why I like the saying "If you never jump, you'll never know who is there to catch you". I am here to catch my family and friends if you need to be caught. Please know that my heart aches for each and everyone.

As I don't compare your strife's and struggles with mine, please don't compare the way I handle my situation. I am asked all the time,"how do I get through each day without feeling depressed?". My answer to that is my faith. I will not deny that there are moments and sometimes a day that I am not at my best in positive attitude, but those are the times that many of you don't see. I am determine not to go to the "dark side" with this battle. I know that is what will lead me to a losing battle. However, because I do that and it looks so simple does not mean you are expected to do the same. It's okay to cry, tears lead to rainbows. It's also okay for feel sad or down as long as it does not last to long.

I guess to sum up this post I want all of my family and friends to know that I hurt for you like you hurt for me. But what I have learned through this cancer journey is not to let the hurt take over your life. As I am reminded daily, life is a hour glass where the sand moves quickly. Don't let your sadness take any grain of sand away from you. I believe that dying is not the greatest lost of life but the greatest lost is what dies inside you while you are living. Remember you are not burdening me by coming to me with your problems or worries. I will cry with you, but I will not pity you or let you pity yourself. That is what a true friend does.

Sunny

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