Cancer Thread: Stories and Support

[moosehead]

First and foremost, best wishes to you @COdogman for good health and quick recovery. As others note, a positive mental approach is as important as good medicine. Trust and rely on both. You are one of the glass half full members in this internet family of ours. As you offered up in this OP, also let your family and loved ones draw straws and give back to you through this fight.

Then kick cancer in the ass.

We have had both survivors and lost family and friends to cancer, which you will find touches nearly everyone. Sharing your story rather than shrinking from it lets everyone provide input and help.

My favorite example is one of my friends whom we lost last year to brain cancer. Despite the harsh reality of his glioblastoma, which is largely terminal, his strength and resolve never wavered. Three years ago he had his first neurosurgery, and came out of the hospital with 47 stitches in the side of his head. The sutures looked like an Indianapolis Colts helmet logo.

Three months later, he insisted on making our usual boys ski trip. We looked at him like he was nuts. After much consternation by our crew, he just simply stated, you are taking me skiing, right? We ended up skiing all the same black runs we normally did for the past several decades together, most of it above 9k’ elevation. Only change is he got tired quickly, so we took three lunches.

Then last year he had his second brain surgery to remove a tumor that had reoccured. Again, this is typical of his particular form of cancer. 6 months later, despite being fairly significantly impaired, he once again asked us to take him skiing at Snowbird/Alta. The mecca of our sport and home of some pretty extreme terrain. We asked him what his oncology and neurosurgery teams thought. He confirmed that they felt it was a horrible idea. Nonetheless, he insisted, and so we ventured to the Wasatch to take him skiing for what we all knew was his last outing. He must have fallen 50 times in 3 days, but kept getting up with a big ole shit eating grin on his face.

While I don’t know the GIST form of your case, I sure hope that treatment is more probable and successful than the above form.

Please let us know how you progress. Best to you and your family.

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[COdogman]

First and foremost, best wishes to you @COdogman for good health and quick recovery. As others note, a positive mental approach is as important as good medicine. Trust and rely on both. You are one of the glass half full members in this internet family of ours. As you offered up in this OP, also let your family and loved ones draw straws and give back to you through this fight.

Then kick cancer in the ass.

We have had both survivors and lost family and friends to cancer, which you will find touches nearly everyone. Sharing your story rather than shrinking from it lets everyone provide input and help.

My favorite example is one of my friends whom we lost last year to brain cancer. Despite the harsh reality of his glioblastoma, which is largely terminal, his strength and resolve never wavered. Three years ago he had his first neurosurgery, and came out of the hospital with 47 stitches in the side of his head. The sutures looked like an Indianapolis Colts helmet logo.

Three months later, he insisted on making our usual boys ski trip. We looked at him like he was nuts. After much consternation by our crew, he just simply stated, you are taking me skiing, right? We ended up skiing all the same black runs we normally did for the past several decades together, most of it above 9k’ elevation. Only change is he got tired quickly, so we took three lunches.

Then last year he had his second brain surgery to remove a tumor that had reoccured. Again, this is typical of his particular form of cancer. 6 months later, despite being fairly significantly impaired, he once again asked us to take him skiing at Snowbird/Alta. The mecca of our sport and home of some pretty extreme terrain. We asked him what his oncology and neurosurgery teams thought. He confirmed that they felt it was a horrible idea. Nonetheless, he insisted, and so we ventured to the Wasatch to take him skiing for what we all knew was his last outing. He must have fallen 50 times in 3 days, but kept getting up with a big ole shit eating grin on his face.

While I don’t know the GIST form of your case, I sure hope that treatment is more probable and successful than the above form.

Please let us know how you progress. Best to you and your family.

Thank you @moosehead for the kind words and sharing your friend’s story. I’m so sorry he’s gone now. He sounds like my kind of guy! Every time I hear a story like that my spirit is renewed and I also feel very lucky. Because while I wish I didn’t have cancer and now dependent on medication and quarterly CT scans for the rest of my life, at least I know it’s possible to survive. Not everyone’s diagnosis provides that possibility. My Oncologist is also very helpful with this - she treats people with much worse prognoses than me and she doesn’t tolerate me feeling sorry for myself. She just says “keep doing what you’re doing and you’ll be around for awhile”

Make sure you share his and your family members’ stories to anyone who will listen. Even if it’s not that person who can gain strength from it, I bet they know someone else who will. It also keeps the memory of your loved ones alive every time you think and talk about them.

My medication makes me tired, but otherwise I’m trying my best to squeeze every last drop I can out of the time I have left on this earth. And I’m learning to enjoy those 3 lunch days like your friend. No, I can’t work 70 hours a week like I used to, but I probably needed an excuse to slow down a little anyway

It took me several months of daily exercise to get my strength back after that surgery. I came out of the hospital after 7 days 30 pounds lighter with 140 staples running down my abdomen. In the beginning I would have to sit down multiple times during each workout because I kept getting lightheaded. Now I can pretty much do everything I used to do, which I’m very grateful for.

After my diagnosis I joined a support group for others with this cancer and met a guy who was my age when diagnosed and had already survived over 20 years on the same medication. Most of the studies suggest a 5-10 year survival rate, but all I needed to know was that it was possible to do better. If he and others had not shared their stories I would not have known that and my outlook on my situation would have been much worse. So now I try to do the same in case it can help even 1 person keep their head up, then it was worth getting out of my comfort zone by sharing details of my story.

This is the group I joined if anyone ever meets someone with GIST who needs support. They are a wonderful group of people. It’s a rare cancer so it doesn’t get as much attention or research dollars as some of the more well known types.
https://liferaftgroup.org/

 

[SASSquatch]

@COdogman - fellow cancer survivor here. And I couldn't agree more with your sentiment of "Fuck Cancer" with a capital "F."

It isn't easy sharing something so deeply personal as a cancer diagnosis so kudos to you for your willingness to share.

Like you, I had an aggressive form of cancer that had already spread (for those that may not know, the stages of cancer reflect size and where the cancer has spread from its original location). I needed surgery, repeated chemo, and radiation. It was one of the most difficult things I've had to endure but I had a very strong support group - including friends and family, and that is the key. I learned to lean on people and I'm the kind of person that is more comfortable being leaned on than the other way around.

The experience taught me to be vulnerable, to appreciate even the little things but also keep things in perspective a little bit more. Too many of us roam this earth with a mindset that we are going to live forever and staring death in the face reminds you that our time here is so short in the grand scheme of things.

At the end of the day, every experience in life is what you make of it and my cancer fight taught me to look more on the positive side because it doesn't cost you any more to think positively and the only thing you are going to take with you into the afterlife are memories.

So make sure you make ones that count in that R1T.

Stay strong brother!

 

[COdogman]

@COdogman - fellow cancer survivor here. And I couldn't agree more with your sentiment of "Fuck Cancer" with a capital "F."

It isn't easy sharing something so deeply personal as a cancer diagnosis so kudos to you for your willingness to share.

Like you, I had an aggressive form of cancer that had already spread (for those that may not know, the stages of cancer reflect size and where the cancer has spread from its original location). I needed surgery, repeated chemo, and radiation. It was one of the most difficult things I've had to endure but I had a very strong support group - including friends and family, and that is the key. I learned to lean on people and I'm the kind of person that is more comfortable being leaned on than the other way around.

The experience taught me to be vulnerable, to appreciate even the little things but also keep things in perspective a little bit more. Too many of us roam this earth with a mindset that we are going to live forever and staring death in the face reminds you that our time here is so short in the grand scheme of things.

At the end of the day, every experience in life is what you make of it and my cancer fight taught me to look more on the positive side because it doesn't cost you any more to think positively and the only thing you are going to take with you into the afterlife are memories.

So make sure you make ones that count in that R1T.

Stay strong brother!

Thank you @SASSquatch! Couldn’t agree with you more. I’ve learned many of those lessons you mentioned over the last year. I was definitely a young person that lived full speed and wasn’t thinking much about the end of my life at any point.

As I got into my 40s and the doctor starts talking about blood pressure in your physicals and they ask questions about colon exams in the near future I had already started to realize I probably wasn’t invincible . So this was a surprise, but also a reminder that cancer can come for any of us at any age.

Congrats to you on beating the ‘F’ out of your cancer! I appreciate you sharing your experience.

 

[Donald Stanfield]

Keep an eye out for trials and stuff. My mom had follicular lymphoma which was supposed to be incurable and did an immune system treatment and has been in remission going on 10 years now.

It’s possible, have faith and keep that great positive attitude.

 

[COdogman]

Keep an eye out for trials and stuff. My mom had follicular lymphoma which was supposed to be incurable and did an immune system treatment and has been in remission going on 10 years now.

It’s possible, have faith and keep that great positive attitude.

That’s amazing! So glad that your Mom did that and it worked! It really sounds like some of the most promising treatments for all kinds of cancers are immune system treatments.

I do pay attention to what the latest trials are for mine because I like knowing what the latest strategies are, but generally my doctors want to save that as an option for later if the first line drug stops working For me.

I appreciate the kind words! Tell your Mom she needs to get an F cancer tattoo now

 

[Donald Stanfield]

That’s amazing! So glad that your Mom did that and it worked! It really sounds like some of the most promising treatments for all kinds of cancers are immune system treatments.

I do pay attention to what the latest trials are for mine because I like knowing what the latest strategies are, but generally my doctors want to save that as an option for later if the first line drug stops working For me.

I appreciate the kind words! Tell your Mom she needs to get an F cancer tattoo now

She has one. It’s right above where her central line used to be.

 

[State11]

I am so sorry about your sister. 8 years is a long time to fight that fight! She must have been tough as nails. Keep her memory alive by sharing her story with others. You never know who it might inspire.

She really was! She fought like crazy and endured so much, yet laughed all the time and made everyone's life around her better/more enjoyable. We were lucky that she transferred her treatment to Stanford, so she stayed with us for a visit to her Drs every 3 months for several years despite her living in VA. You all keep fighting!

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