Alone you'll self destruct

I've taken a bit of time looking through other people's journals on here today. There's hope, love, and families who've been made stronger because if nothing else is shared they share an illness. Sad as it is to say VHL really is "all in the family".

Today I've been trying to mentally process this illness. I'm the only one in my family with this. My dad died in 04' at the age of 52. He had VHL. We never knew anything about it. My dad was in a closed adoption in the 1950's. They said he had skin cancer which had spread uncontrolled through his body. I watched him die in a Hospice. Just months before his death he was in a coma and they thought he had a stroke. My mom couldn't sign any documents because they were divorced so it was left to me. I signed it just for him to wake up and find out he had 3 months left to live. One of the last things I remember was him laughing in my face when I told him I loved him.

I've known I have had VHL since late 2007. Just a simple uncurable sore throat and a CAT scan later here I am. I want to better myself and I need to. I live like nothing is going on but under the surface there is something there. I still smoke cigarettes, eat unhealthy things, do drugs,and drink on occation. I keep promising myself I'll change, then I wonder what for. It's bad to say but there are times I know I'd rather go earlier in life by my own choices than lie in a hospital. Anyone who has cancer who has seen someone die from it has to have it in the back of their mind..."Will I go like that"?

God is a whole different topic. I see so many "God bless yous" on here it makes me wonder sometimes. I feel like there is a reason for everything, but supposedly everything originated from God. Then why are there imperfections? If someone (God) is perfect how can they create imperfections? Even if someone was to say "Well, Satan is behind all human suffering" then I ask why God created a being that would be capable of inflicting suffing that generally attacks people who are good at heart. We are the good people. Being sick changes you in a few ways but most people who are sick are "The good ones"...Maybe God just likes to pluck the wings off the butterflys.

By TinaDiane
Posted June 7, 2009 at 11:40 pm
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Simon,
I am not sure why there is disease and illness in the world. I have watched my Mom and my step mom die from bad diseases. I have worked in hospitals for 30+ years and seen LOTS of people die. More folks come out the door than only go in. THIS IS GOOD. Doctors do save lives. One at a time. One thing for sure, death will hit us all. I think believing in a Loving God makes us all live a little better. I think it makes for a better world. I also dream of ETERNITY where there is no suffering and no illness. If this belief can keep me going, than so be it. I pray for palm trees, sunny beaches, swimming with dolphins, eating steak and ice cream, drinking margaritas, watching the sunset, seeing my Mom again.....
I hope we can all take the best care of our health that we can. We can try to keep the healthy genes we have healthy. We are all human and we can't be perfect all the time. We all just do the best we can.
The end will come when it comes. We can fight a good fight and say we never backed down. We are together as VHL survivers....
Thinking of you,
Tina

By Ieva
Posted June 8, 2009 at 7:29 am
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I keep saying that if there is such God, he was certainly doped when he created me. Or else he has sadistic personality disorder and since I am not a mazohist....But anyway I remember that there may be some God just because it has become very popular here to sit down and wait till somebody comes and solves all problems…And I hate waiting.

By tqm1ed
Posted June 8, 2009 at 10:11 am
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wow! as i read your post that's all i could think of saying to myself. i consider myself a very religiously and mentally strong person and i admit recently when dealing with infections i too almost began to go down that same trail of thinking.
then i would begin to think that i'm an 'example' of always using the strength that God has blessed me with and continue through the fight. even though i experienced much difficulty fighting infections which began in the hospital after a 9 1/2 hour surgery i just kept focused on the goal of getting better. i don't know how i acquired such strength of dealing with 'kidney failure' 'stage 4 colon cancer' which had metastasized to my 'peritoneal lining, liver, and esophagus.' when diagnosed i was told "30 days without treatment and get your affairs in order and or maybe 6 months with treatment and were not sure what were going to treat you with and still get your affairs in order." well, here i am 1year 7months later. i've experienced so much personally and probably too much living through what others have had to experience. all i know and believe is do the best you can and hopefully you make it through your personal diagnosis. maybe at the very least you can set an example of how you keep up the fight with whatever strength God has blessed you with and someone you may come in contact with uses your example to also do something good in this world. i've read your post several times and even though it appears on the surface you wonder 'why' deep in your post you cry for help and that alone reveals your deep strength. i hope this makes sense? sometimes writing isn't as easy as just speaking with someone. i'll keep you in my prayers.

ed

By joyceg98
Posted June 8, 2009 at 11:00 pm
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This group is also a "family" in another kind of way. We are born into one family, we are joined in other circles by shared experiences. Here our "circle" is defined by the shared experience of the disease that affects us, or by having a rare disease with all the complexity of that experience, or by having cancer.

The purpose of a support group is to help one another. It is good that you are talking about your desperation, but we are not in a position to help you with the depths of despair that I hear in your post. I hope you have someone to talk it out with, preferably a professional near you, or at least someone available by phone. Talking it out is usually much more beneficial than trying to process such complex emotions in written form.

I can tell you, though, that many of us experienced devastating experiences with our parents who had these diseases. In the old days, diagnosis was all the more difficult, and treatments were not as advanced, and people went through some pretty awful experiences. And for the children, watching that happen was difficult as well.

Today, though, we have more technology available to us, and in VHL we have a much better understanding than they did in your father's time. His experience does NOT have to be your future. Here is more hope today for people with VHL than ever before.

You can choose to focus on the bad experiences of the past, or to focus on the hope.

Personally, I choose to focus on the hope, keep that torch out there in front of me, and keep working for positive change. New things are happening every day. This morning, for example, I met with a pharmaceutical company that has a new drug coming out which we think will be very helpful for VHL. You will see me posting some information soon to see who might be interested in exploring this option.

We all have choices every day. When we wake up in the morning we can groan and focus on our pain, or we can rejoice that (1) we woke up, (2) we have another day ahead of us, and (3) we can choose to have a good day.

The difference between a good day and a bad day is not all about health, or wealth, or circumstance. It's about choice.

Read back through your original message, and think about the choices you make every day. Are they the choices you really want to make? If you want to have a good day, the current set of choices is not working for you.

By elise
Posted June 9, 2009 at 11:24 am
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I dont have VHL, but my husband does. I was a rambunctious woman before I met him 5 years ago. I first didnt know he had it, but always wondered what that scar on the back of his head was. Then he told me. We were one of those couples who got pretty serious, fast. And then, things were put on hold when he had to have another brain surgery a few months into our relationship. I found it so weird that this young man, who loved me, despite my imperfections, was always smiling, happy go lucky and just genuinly loved everyone around him, had this "VHL" after his brain surgery, he was still smiling. Two in a half years later, we were married, two weeks after that, he had kidney surgery. Still smiling. Two years after that our daughter was born (december 08') and now, the day before her 6 month birthday, he will be having another kidney surgery. Hes still smiling, but something in him has changed. He doesnt think so though. One thing I know for sure, is that he has always had God. Always leaned on him (in times when hes alone) Always prayed and whole heartedly believed. God gave us free will. And what we do with that is our own choice. We can take the good with the bad. Or we can just wallow in our own self pity. I, or anybody for that, cannot even try to comprehend why God does the things he does. I look at my daughter everyday and thank God for giving me my husband. Tumors and all! I truly believe that his "condition" has shaped him into the loving husband, brother, son, father and friend that he is today. He doesnt take life or anyone in it for granted. Your truly right, Alone you will self destruct. Which is why you need God in your life. I will continue to pray for you and just remember that your a beautiful person and have so much to offer this world...just remember we are all imperfect.
God Bless

By chantillyjack
Posted June 14, 2009 at 2:48 pm
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You raise important questions that we all ask; why me? Where's this merciful God?

The questions have no good testable answers as far as I'm concerned.

You can take some solace in knowing that every person you see on the street or anywhere is going to die so we all will share that experience. You're no worse off than any of them. Nor am I. Beyond that, as far as I can see, enjoy every second with or without pain that you get.

A lot of people pray because it makes them feel either good or better or less fearful. It might work for you. Try it. If you believe it's not nonsense it may help you feel better.

According to the NIH stats I'm supposed to be dead already from nsc lung cancer. I'm not and it's a beautiful sun-shiny day (it really is and it's 70 degrees here with low humidity!). Enjoy it while you've got it. Our alternative is to be miserable. There's always time to be miserable, why rush it?

God or no God, we can only control those things we can control and nothing else. Grab those and tweak them. Let the rest take care of themselves and let them go or sit back and watch. You can control being afraid if you decide you want to control it.

Good luck! Gotta go to a party at the neighbors. Find a party for yourself and laugh. Kiss and hug people. They usually like it.

By LaGata
Posted June 15, 2009 at 2:20 pm
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Simon,

I've been wondering how you are. First time I've seen you on for a very long time.

I was not one that said, why me, to the cancer, same as I don't say it when something good happens. Lots of things have happened in my life and it usually boils down to the "luck of the draw". Genetics, accidents both good and bad, no single direction to my life but I've taken it all in and it's my life. I try to make it the best that I can, for me and those around me.

I now have Stage IV cancer to my bones. I believe it is a natural progression of the cancer when the right chemo or pill or shot hasn't yet been found. I do not believe that some invisible person is rewarding me or punishing me for anything.

We are all, every one of us, born with a terminal illness called Life. There is no cure. It's just a matter of how long a life we have inbetween birth and death. Do you like being around people that are happy or sad? I like to be happy, silly, even. So that is what I strive to be. When you asked, "Will I go like that?", I think that is more a matter of what you want to do, for the most part. Just because you had the task of watching someone else die like that doesn't mean that you have to do the same. I do hope I have the presence of mind to be cracking a funny with my last breath and I hope it's still a long way down the road.

You're fighting a good battle, Simon. Keep it up and occasionally think of something that was especially nice or funny or clever to bring a smile to your face. It makes the whole body feel better. Maybe it can even frighten the VHL into slowing down a little while.

My best to you. Keep posting, please.

LaGata _^..^_

By judithanne
Posted June 29, 2009 at 6:04 am
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I was diagnosed with cancer, but never asked "why me?" when I saw how many cancer patients there were at the cancer center. I was, however, very angry with God because the cancer disrupted my life so much. I had no right. We make choices in life which can affect our health or make inherited health situations worse. Perhaps if you give up some of your bad habits, things may go along better for you. How about giving up smoking, drinking and drugs. Try a healthy diet and exercise. The web has numerous sites that talk about diet and how it prevents or slows down cancerous conditions. Just because a relative died from VHL doesn't mean you will. You could lead a long and healthy life if you love yourself enough to take care of yourself.

By OneD
Posted June 29, 2009 at 1:06 pm
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Simon, I won't pretend to know the pain you are in both physically and mentally. But, I will tell you I have been in enough pain both physically and mentally that I decided I couldn't take it anymore, was not angry just very very tired. I like you thought why wait so I took matters into my own hands. Found out I wasn't in control, it would not be me who decided when the end would come. Unexpectedly someone found me got me to a hospital and here I am years later, take meds for depression,pain, etc. and have learned control is an illusion and all any of us have is NOW. For the most part I enjoy the now.

Personally I would rather live my life as if there is a God and die to find out there isn't than live my life as if there isn't and die to find out there is. Not preaching just a personal choice for me.

You are not alone, never have been, never will be, just feels that way sometimes. OneD

By Betty-Oops
Posted June 29, 2009 at 4:28 pm
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Hi Simon,

I cannot add to what OneD so eloquently wrote. I just want you to know the depth of your pain touches my heart. I am one who finds comfort and strength in God. I have no answers or words except I care.

By beansy
Posted June 29, 2009 at 11:33 pm
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God? No. You. Yes. You do the best you can with what you have been dealt. If the best you can do is what you are doing, then so be it. Nothing is fair, not everyone who is ill is a good person. Good things happen to good people and bad people. Bad things happen to good people and bad people. I'm not good because of a god. I am good because I love life despite the way the cards fell. And, since 2008
I am alone and moved to a new State. Struggling has been my middle name.

Every single person with the ability to do so, knows they will die and they all want it to be painless and fast. You can't always get what you want. Write me.

beans

By Lindakaylkw101
Posted June 30, 2009 at 9:51 am
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I've watched people die, a lot, that I love, I still believe in God, I am a stage 3 colon cancer survivor.

If you want to go get "THE SHACK" and read it it will amaze you.

Keep the faith and Hugs
Linda

By snugglebearsmom
Posted July 3, 2009 at 2:30 pm
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I completely agree with you on the "god" aspect of all of this. My 5 year old son has an incurable fatal progressive disease called Metochromatic Leukodystrophy. Since day 1 I always asked myself, if there is a god why to little children get these horrible diseases. My son looks nothing like he did a year ago because he had an unrelated stem cell transplant and chemo to hopefully stop this disease. Now he takes 2 handfuls of medications everyday and he is learning how to walk again. I want you to know that you are not alone here and I am grateful that this site even exists. It has helped me through many bad times. If you need anything let me know.
Rhonda (Tyler 5)

By 1adam12
Posted August 17, 2009 at 11:42 am
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Hello Everyone!
I was first diagnosed with VHL in 1987 when my doctor discovered several retinal angiomas. I was sitting in his opthamology chair at Barnes-Jewish Hospital in St Louis when he told me, "Brian, you have 7 tumors in your left eye, and 2 in your right eye." I fainted when I heard this diagnosis because I had never heard such a thing. After I regrouped, he asked me some family history and discovered that my father and grandfather died from kidney cancer, and that's when he surmised that I had VHL. We had this confirmed in 1991 when Dr. Zbar from NIH got our entire family together, drew blood on about 24 of us, and confirmed that myself and my brother carried the gene.
I had a total of 14 surgeries for this in 1987-1988 and 2 more in 1999.

I kept my head in the sand wanting to block any thoughts of other systemic issues with this until 2003 when my family doctor insisted that at a minimum I get my kidneys scanned, "at least for your children's sake so they'll have their father around". That's what I really needed to hear....some blunt reality. I went to get scanned and they discovered a nearly 3cm tumor on my left kidney. I had the surgery at Barnes-Jewish and actually went home the next day. I had root canals that put me in more pain!

Since that time, I have turned into somewhat of a "lab rat" between Barnes-Jewish and NIH. I have now 3 tumors under 3cm that are being monitored in my kidney, I had a testicular cyst removed in 2005, I am planning to have a brain tumor removed by year's end,
and I just went through a 9 hour surgery at Barne-Jewish (July 23rd) to remove 5 tumors w/cystic components on my spinal cord.....and that has been no picnic, but I'm slugging my way through it!

I know there are some excellent researchers working on this disease, (like my niece in Chapel Hill and at NIH), and they are working extremely hard behind the scenes not only with fine tuning certain angiogenesis inhibiting drugs, but also with stem cells to hopefully help in the recovery process (especially with spinal cords). Thankfully the NIH's budget has been "unfrozen" with the new administration and much progress that has been held up since 2003 can begin to take place.

My faith has been tested for years with this but it is now stronger than ever. I have many trials ahead for me, and I pray my faith continues to strengthen. Each of my children have tested positive for this, so I need to demonstrate strength and composure for them so hopefully when their day comes to face this, they too can think of their "old man" and remain strong.

I've tried to read the stories of those famous and not so famous and about what they went through before me, to keep me in a positve frame of mind. For example, The Book of Romans (whether you are Christian or not) has been very inspirational to me to view how Paul faced imprisonment, arrest, and the threat of death at nearly any town he traveled to, and while out at sea with terrible storms.

I also have an uncle who served as a "belly gunner" in WW2, at age 20, flying on 40 missions under a B25 in the Pacific, dangling from a harness with only a shield of glass protecting him. He kept a journal whereby he described each of their mission, targets, anti-aircraft resistance, and Japanese planes that were shooting at them. And that's exactly how I feel at times.....that this disease has a target on me and is trying to gun me down! But just as Uncle Chic survived the onslaught and lived deep into his 80's, I have the faith that myself and my children will also.

Thanks for allowing me to share and I apologize if I rambled. But the good news is that I'm here to do so!

Peace!
Brian

By TinaDiane
Posted August 17, 2009 at 12:08 pm
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Brian,
I loved your rambling!! What a remarkable attitude you have. I admire your strength and thank you for sharing your story. It is so important for all of us to have HOPE. Every time I go to NIH, I am frozen with fear of what they will find, but yet, I have great gratitude for the research and commitment they have to finding treatment and cures for the diseases we all carry.
Best of Health to us all,
Tina

By mjohns31
Posted August 24, 2009 at 11:50 am
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I just finished a book called The Shack. It was wonderful and really helps with the questions about God. You might want to find it and read it. It's a really quick read and hard to put down once you start it. You're not alone and you have a purpose:)

Welcome to Inspire!

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