It is hard to explain
to people who have,
thankfully,
not been in my situation
why I feel such a lack of control.
Someone who has become a special friend to me
sent me a very blunt
message today that I thought
would help explain
to others
why I wish to do the surgery...
Here it is:
"Stage IV melanoma is lethal. It is a mother f***er that you do not want to mess with (I'm sure you already realize this, but it needs to be explicitly said that you could be facing an early death with it). IF you have a change to stop it from happening, you should.
The complications from surgery can be pretty bad. Lymphedema is surely not pleasant, and neither is getting every cold and flu that comes around. HOWEVER, these are complications that you can LIVE with. They are manageable, its like living with diabetes or something. They will suck, but you can have children, watch them grow, maybe have grandkids...you can have the opportunity to live even if it is slightly modified. None of those complications should kill you (unless you dont get treated for an infection, but you're smart and that wont happen). Even if you end up regretting the surgery...guess what?! you're alive to feel regret. It could be worse. I think that's better than the cancer progressing and then regretting not having it.
downside of surgery: just remember that if you need a clinical trial that some people get the drug and some don't (most trials work like this anyway). It's up to fate...but that's the boat you will be in with stage IV melanoma too.
I understand that with agressive monitoring they should be able to stop the disease if it does start to progress. But if someone doesnt do their job right (trust me this does happen, even in the little clinical experience i have), then you are stuck with a horrible disease. And you're cancer wasn't/isn't showing up very well in the first place on scans...how are they planning to catch it early?
Dr. Bad Mustache is great I'm sure, but he's not sloan kettering great. There is no data yet to support removing the nodes because it's experimental (I want to say 'duh' here because I feel like that was a stupid comment for him to make). Clinical practice usually lags at least a few years behind research, and he's not where the research is happening, so how could he possibly know. If glenda (or whatever you named her lol) says she supports surgery, I take her opinion more seriously. She is DOING the research and she wouldn't recommend something she didn't think was helpful.
So in conclusion...I think the gains of surgery FAR outweigh the risks of watchful waiting. You are 23...I think you should get the chance to live and grow old."
The complications from surgery can be pretty bad. Lymphedema is surely not pleasant, and neither is getting every cold and flu that comes around. HOWEVER, these are complications that you can LIVE with. They are manageable, its like living with diabetes or something. They will suck, but you can have children, watch them grow, maybe have grandkids...you can have the opportunity to live even if it is slightly modified. None of those complications should kill you (unless you dont get treated for an infection, but you're smart and that wont happen). Even if you end up regretting the surgery...guess what?! you're alive to feel regret. It could be worse. I think that's better than the cancer progressing and then regretting not having it.
downside of surgery: just remember that if you need a clinical trial that some people get the drug and some don't (most trials work like this anyway). It's up to fate...but that's the boat you will be in with stage IV melanoma too.
I understand that with agressive monitoring they should be able to stop the disease if it does start to progress. But if someone doesnt do their job right (trust me this does happen, even in the little clinical experience i have), then you are stuck with a horrible disease. And you're cancer wasn't/isn't showing up very well in the first place on scans...how are they planning to catch it early?
Dr. Bad Mustache is great I'm sure, but he's not sloan kettering great. There is no data yet to support removing the nodes because it's experimental (I want to say 'duh' here because I feel like that was a stupid comment for him to make). Clinical practice usually lags at least a few years behind research, and he's not where the research is happening, so how could he possibly know. If glenda (or whatever you named her lol) says she supports surgery, I take her opinion more seriously. She is DOING the research and she wouldn't recommend something she didn't think was helpful.
So in conclusion...I think the gains of surgery FAR outweigh the risks of watchful waiting. You are 23...I think you should get the chance to live and grow old."
And that, my friends, is why I am choosing to do surgery.
3 comments:
I WANT YOU TO REMEMBER YOU TOLD ME YOU WOULD NEVER GIVE UP THE FIGHT. GET THE SURGERY. BY DOING SO YOU ARE STILL IN THE FIGHT.
WE LOVE YOU MORE THAN YOU KNOW AND WE WANT YOU TO HAVE A CHANCE AT THOSE BABIES.
POP
Although it was a hard decision to make- I think it is the wisest & safest. If I were in your shoes, even knowing the risks, I'd be making the same decision as you! Scars are scars but your life- you only have one! Love ya girl!
I wanted to comment on so many post to DO THE SURGERY!!! But, as it has been said over and over, it is your choice and I think you made the right one. Its going to be a rough go- but your strong and will get through it. Your in the hands of the best and your support system is unreal. I'm so proud of you. I know this has been a difficult decision. Thinking about you! Prayers and love.
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