Brain Tumors and me...and you

[darren]

Well, Roxi gotted it started in the BTS Ride for Research 2006 thread. She stated why she joined Team Views From The Top and will be riding with us on May 21st. I'd like to take the time to start this new thread to tell the story of how brain tumors have effected me and why I use VFTT to raise money for the Brain Tumor Society. I encourage everyone on the site that has been effected by brain tumors to post their story too. So far our team only has 6 members and we have only reached 20% of our goal. Maybe a few heartfelt stories will help us increase those numbers.

It was about 8 years ago and my father had a bi-lateral subdural hematoma. In English, that means he had severe bleeding on both sides of his brain. He got to the point where he slept 23.5 hours a day and during the 1/2 hour that he was awake, he didn't recognize family members. He spent nearly a month in neuro at Mass General Hospital in Boston and so did my family and I. I found out later that the docs had pretty much written him off and expected him to die, but after brain surgery and an incredible recovery he was back home and I had my father back.

During all the time I spent on the neuro floor, there was one thing that became a fixture. Death. It happened all the time. There are a lot of brain tumor patients in neuro at MGH and what I came to find out was that a lot of them die. The other things that I learned was that brain tumors, unlike other forms of cancer do not have a known cause. You smoke, you get lung cancer. You hit the tanning booth too much and you get skin cancer. You get a brain tumor and you do not know why. It seemed like my father, and my family, had gotten off "easy".

A "wierd" thing about brain tumors is the age groups that they hit. Young children and early 30's are the peak groups. So you either get a brain tumor when you are about 3 and your parents are really getting attached to you, or you get one when you are about 30 and you just became a parent yourself.

During the time I spent on the neuro floor and from the contacts I had met there, I heard countless nasty story. Just down right depressing stories. Stories that hit you in the gut. Mainly 3 year olds in chemo and stuff like 30 year old mothers who have complications during child birth only to find out that her problems are caused by a brain tumor. Next thing you know there is a 30 year old guy raising a newborn on his own.

My parents kept in touch with the secretary of one of the neuro docs at MGH. See was the one that asked me to join her on the Ride for Research back in 2002. I jumped at the chance to help and I have been doing the ride every year since.

Last year, a good friend of mine here on the site had a family member who was diagnosed with a brain tumor. I thought about him during the whole ride. Maybe he will tell his story here. Or maybe YOU have a story and you could tell it here. What story do you have? Let's all raise awareness and help further the cause.

Thanks for listening.

- darren


Join Team VFTT or make a donation today

 

[Chip]

Thanks for sharing.
While I've never had any personal (knocking on wood, now) experiences with brain tumors, I feel what you're doing here deserves everyone's support.
We will all jump in the car and spend $25, $50, $100 to hike, eat and drink; I think it's only good karma to moderate that occasionally by considering how these expenses add up, and how some of that money might be better spent.
Plus it makes me feel good !

 

[jade]

I appreciate the opportunity to enjoy one of my favorite activities with other hikers and raise money for a very worthy cause at the same time. I haven't participated in the bike rides but I thoroughly enjoyed last year's Escape the Escarpment hike...this year's Pound the Presis has got me getting out on the trails more often with friends to make sure I am ready for the challenge of the Whites--what a treat! If you are not up for the hike (or ride), please consider sponsoring a fellow VFTTer.......

Thanks to all those involved in putting the hike together--especially Darren and JayH....See you on June 17th!!

...Jade

 

[Jay H]

Well to add my story, my mom who has had medical problems on and off since 1986, was diagnosed with a "craniopharyngioma" which as far as brain tumors go, a fairly "better' one to have, if there is such a thing. It is benign and typically found in infants and minors but can appear in adults, such as my mom who was in the early 50s and working full time.

Here's some info from the NIH:
http://www.nlm.nih.gov/medlineplus/ency/article/000345.htm

Anyway, her tumor was removed successfully in the mid 80s and she's been free of any major side effects other than the typical vision problems corrected in her eyeglasses and some hormonal therapy due to an underactive thyroid gland.

However, since then, she has gone through alzheimers and symptons of Huntingtons disease, namely Corea (involuntary head movements, moderate) and Dysphagia (swallowing difficulties). To the point where she had a feeding tube for a few months. She is currently doing OK, the feeding tube has been removed for about 8 months now but the worst thing is there is no diagnosis of her problem other than the alzheimers and symptons of Huntingtons. She has been given tests at Columbia-Presbetarian in NYC and it has come back negative for Huntingtons but her condition is unknown at this point and she is functional, but usually is better off just to keep an eye out.

I live about 15 minutes from them and usually go there often to help my father who has hired a full time caregiver just to at least let my father have some kind of normal life as a caretaker, he can go out and run errands, work in the yard, etc, without having to be there all the time.

So, my events that I have run for 3 years now is just something little that I do to at least do something. The worst thing of all this is the feeling of helplessness, the hiking things I do is just a way to feel a little better and to help Darren raise money doing something I love.

I usually leave Darren to raise money for the ride for research, after all this is his site and I don't care who raises the money, so long as it all goes to TBTS. TBTS has this website set up that I've done for my escarpment hike and the upcoming presi traverse to help raise money too:

http://www.firstgiving.com/poundthepresis

So if you haven't pledges the ride, how about a hike?

Jay

 

[arghman]

My grandfather died in 1949 or 1950 of a brain tumor (or something in the brain), when my mom was 4 yrs old. I know very little about him other than he looked pretty spiffy in an army uniform.

thanks for posting...

 

[mudhook51]

A little off the subject but I first found this site while searching for info on head injuries. My daughter was badly injuried in a car crash over 10 years ago,( every parents nightmare, worse when you're on the responding rescue squad), and its been a long uphill battle .
Anyway, research for head trauma (from accident and tumors) has come a long way in 10 years, but still has a long way to go. Keep up the good work and ride like someones life depends on it, it does.

 

[--M.]

Well, sure, I knew someone. It ended a highly celebrated life.

But what really drives me on this issue is that it's obvious from Darren's story (and others') that he (they) have seen the hard side of life, the brutal, painful, difficult sides of life and death.

Having become acquainted with these truths, the question as to life's purpose approaches meaninglessness. It becomes clear that we are here to help each other, and this BTS effort is an effective way to do it. Supporting it is great. Actually riding and raising funds is even greater. My hat is off to Darren and the team for doing something about our collective plight on this planet.

Best,

--M.

 

[1ADAM12]

Sad Story

I lost my father in 1997 to cancer he was only 50. It started out as lung cancer and branched off to numerous parts of his body. After 3 months of being diagnosed with lung cancer a brain tumor appeared. Five months later he passed. After he died my mother and I have donated our money each year to the cancer society in hopes that they get that much closer to a cure.

We were not as fortunate as you Darren but thanks for sharing your story. At least yours had a happy ending

 

[mtnmama]

My grandaughter who is 6 years old had a classmate Thonos who is also
six years old was diagnosed with a brain tumor last year. Kaylee was very
concerned that Thonos might die. We didn't know what to tell her because
there was a good chance he may die.
Thonos had the tumor removed and is doing well right now. He's back to
school but his life will never be the same. He can't do alot of the things
other children his age can do. We need more research!!! I don't ride
but I will ALWAYS support the Brain Tumor Society. If it were not
for the reseach we have today, maybe little Thonos would not be with us today. Please help us !!!!!! Thanks.

 

[sli74]

I don't know anyone personally who has been affected by brain cancer but being in the cancer research field, I do know that brain cancer and the brain in general are poorly understood and need much more focus if a cure is to be found. The funding for brain cancer is minimal, as I am finding out in my search for grant dollars, compared to the other cancers and thus the research doesn't advance as quickly or efficiently. Research in the medical field is VERY expensive and time consuming, more money research dollars will mean a better understanding and hopefully someday a cure or atleast a lower mortality rate.

I have been donating to the American Cancer Society and American Heart Association for over a decade and really appreciate what Darren and all the others on this site do to help along medical research. Thanks.

sli74

 

[chomp]

No story, just that this is a good cause and that the money you are donating goes directly to the source. Darren runs the site with money from his own pocket. You don't see any ads on the forum - not even Google Adsense links. All he asks in return is that if you enjoy the site, and find it to be a good resource, that you kick in a few bucks. I just did, I hope that you do too.

 

[John Satterlee]

The Ride for Research is a moving experience: so emotionally charged. Looking at the web site, one sees many teams, mostly with names and mostly named after kids. Heart wrenching. Many teams ride with team shirts with kid's names and pictures on them, hundreds of kids wearing cotton tee shirts sneakers and huffy type bikes riding for miles. One year it poured and poured and these same riders were soaked to their cotton drenched bones but yet they rode.

Despite the horrible pain, suffering and sadness that these things cause, this ride is about surviving and hope. I cannot fully describe the atmosphere or what it is like to be part of this.

Thanks to all who have contributed to this cause,

John

 

[Tim Horn]

I am very sorry to hear about these tragedies. My best friend has CNF lymphoma and is one of the few "lucky" ones as he has bounced back from paralysis to be able to talk and walk and even run 3 miles with me at the Boston Marathon. He will hopefully make another few years. I just wanted to share the fact that these foundations really use your money to fund research and find better therapies that allow folks like my friend to get some extra time or just keep a reasonable quality of life as the disease takes its course. If you want to feel like you have a "purpose" get involved with any of these groups and raise as much money as you can. You will enrich your life by meeting all sorts of good hearted people motivated by the same urge to help others alleviate their suffering and or recover from the loss of a loved one. Making a donation is a great place to start but getting out their and raising real cash is much more effective. Yes I want everyone to get involved. Take the VFTT group and get each person to raise $6,000 and you can start to see the difference in every one giving a hundred bucks versus everyone going out and fundraising. A group our size could raise a million dollars if folks were motivated to do it.
So get out there and get involved and start hiking or running or skiing or whatever you do and raise some cash. Cheers All Tim

 

[galaxy]

After having my second brain tumor removed back in 1994, I was determined it was not going to get the better of me. Six weeks after my surgery I climbed Mt. Jefferson and haven't stopped hiking since. Luckily, the tumors I had were "essentially benign".
Unfortunately, my mom was diagnosed with an inoperable, highly malignant brain tumor three months ago and given a prognosis of less than one year.
While I won't be taking part in the fundraising events, I will once againg be donating to this worthy cause.
Thanks to Darren and all the others here at VFTT who participate and/or donate to provide funds for brain tumor research.

 

[Double Bow]

I don't have experience with brain tumors but I've known quite a few people who have battled other forms of cancer. My grandmother died from it. My father-in-law and my grandfather won battles against it. Recently, my brother's best friend died from just about every kind of cancer there is. He was only 21 years old.

It is for these people and the countless others and their friends and families that I donate to cancer research. This is why I will be proudly doing the Pound the Presis Traverse. My doing this may not do much to help. The funds I raise will probably only amount to a quarter of a drop in the bucket, but I just feel that I ought to do something and this seems like the right thing for me to do. Hopefully others will either join us on the trail, on their bike, or will donate generously so we can help fight this dreadful disease.

 

[Greg]

I had a longtime older friend who was simply an amazing man. He suddenly developed a brain tumor and had various procedures done in an attempt to slow or halt it, but it eventually ended his life. I'll never forget how he took it all in stride, never complained. Of course, you could say that he lived a long, good life, but he could have had years more of helping those who needed help, giving what he had to others, and always having the right answers when anyone needed help.
I'll miss him, but he lives on in four sons my age. I'll always help in Darren's cause, because it's really all of our cause.

 

[pedxing]

Last night one of my sons life long friends was over. He lost his Mom to breast cancer when he was 7 and lost his Dad to a metastic tumor in his brain when he was 12. We started talking about his Mom's art (which I greatly admired) and I could see how hungry he was for memories or connections to his parents and how profound the void was that these cancers left in his life. I still cry when I remember the time, many years ago - that I was driving my sons and this boy and his brother to Chucky Cheese - he leaned his head on my son's shoulder and said "I think my Mom is going to die."

I myself have had cancer in the neck (parathyroid cancer) - it seems to run in my family. I feel I got off easy, I'm alive and recovered - although the regular blood tests can freak me right out (I'm waiting on results as I write this) and I had intense anxiety when I waited for follow up tests last time around after the results looked bad (fortunately the follow up tests looked great).

My months at MGH (for burns, not cancer) - also left me with a cause after getting to know a world of suffering and loss I had not before been privy to.

I definitely admire Darren and all the VFTT'ers involved in the Brain Tumor Society fund raising. I'm definitely throwing in donations for the ride and the Presi's trip. I don't think I could raise anything if I rode - I'm tapping everyone I know for fundraisers for burn survivors (and I'm organizing a walkathon in October for fire precention week - and have already been dunning those close to me to walk or donate).

Sorry for the ramble, but between these posts and last nights conversations - I was feeling a lot and felt compelled to write.

 

[pedxing]

There is a great event in Stowe, every May, that people who have been touched by cancer should know about. I haven't been, but I've heard a lot. I volunteered to help out this year, but apparently they didn't need me.

http://www.stowehope.org/

 

[bubba]

Offhand, I can count two friends that have had brain tumors (it seems there may be more but I can't come up with situations). Of these two, one was a middle-aged ski club friend, a mother, wife and early grandmother. We got a report about her brain tumor in early spring and she wasn't with us to ski the following fall. Very sweet, active and otherwise healthy person who is deeply missed.

The other I mention, is my wife's lifelong girlfriend's daughter. She was in her junior year at college... not feeling well, but they couldn't identify what was wrong. The local hospital in the smaller college town knew that her blood count was down and was treating that symptom. Her mother brought her home and followed up with much more testing -- some of which found a brain tumor on the left side of her brain. Surgery has removed the tumor, but left her without hearing in one ear. She is a very lucky young women who is now married, teaching and about to become a mother!

I've tried to support VFTT in the Brain Tumor fundraising as well as I can in the past. When I was "between jobs" for several months, my option was to "fundraise" to supplement my donations. The above family is one of my support partrons well as my family members. As I head out to "Pound the Presi's" this year (and maybe do the ride...) I'll have to reach out further. Links to this thread should motive many donators to cough it up for the cause!!

One other thought -- as important as the money is that we generate, getting the word out about the Brain Tumor Research Society is just as important. We need to let others know that the society exists, so when they have funds to gift, they might remember BTRS. Great job Darren. Great job all!! Get out there and hike, get out and bike and yap it up all over!

 

[skiguy]

It's Not About The BIKE!

I have lived with the thought of having Cancer my whole life. Before I could remember my Father died of Cancer when I was a year and half old. Since then three of my four Grand Parents have died of the same cause. So far I am Cancer free at fourty-six; twenty-one years older than my Father when he got it.
I plan on doing everything I can to support and understand this dreadful Disease.
I really encourage all of you to read The Great Lance Armstrong’s book about Cancer.
http://www.amazon.com/gp/product/0399146113/104-1823836-2142332?v=glance&n=283155
When I read this book I realized that there is this thing called HOPE!
Please support the VFTT team for this cause.