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Childhood Brain Tumor/ Appointment w/Mayo FL

Brain Tumor | Last Active: Dec 24, 2022 | Replies (12)

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To clarify - I was trying to say that getting a doctor - not for treatment from him/her - but as a medical case manager- might be very helpful. That would enable you to have a Dr without that Dr having to be responsible for giving care which is beyond his/her level of expertise.
I want to also add that life isn't fair. Everyone knows that as a statement. But some people know that as their reality. Like you. Like me. Like others on this forum. We often receive the gift of life thru medical intervention. But then we have to go forward living the hand we were dealt. Sometimes I wish that when the Drs turned off the respirator I was on as a young child of 6, with my parents there to say 'Goodbye,' that I passed away easily instead of suddenly become conscious + breathing. My life has not been easy. Or fair. I can't say I've had a good life, but I can say that what I've done with the life has been to do good for other ppl + animals. I just decided that if I can't have a good life myself, I'm going to what I can to help someone else, or animals. I have not had a life of happiness. Or health. But I feel deeply satisfied with what I've done to make the best of the hand I was dealt. Much of the time, what I needed came from God, not from Drs or others such as government. We have 8 Billion ppl now in the world. When you look at it in total, we who live in the Western world have our worst day better than half the world's best day. That being said, it doesn't change the experience that life is just really hard sometimes.
Praying for you.

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Replies to "To clarify - I was trying to say that getting a doctor - not for treatment..."

I was not supposed to live & doctors at Sloan Kettering didn't have much hope for me(1988) I failed a new form of chemotherapy they had at the time & they tried an older form which shrank the tumor by a 1/3. I had 10 years of "normalcy" before crap hitting the fan & by then I was an adult. I was never monitored the correct way to begin with. Never told to follow up with an endocrinologist meanwhile I had a hypothalamic glioma. I went through percious puberty at 3 & put on Lupron Depot because of growth & to seal the growth plates which reading about Lupron Depot now I have read horror stories, not to mention the age I was when I was diagnosed with my tumor(2 years old), the chemos I was on (VP 16 & Cristine & CCNU). All the steroids too. I have been told that I am actively dying. I have tried to get hospice(I don't qualify). Services in my area are horrible. I keep getting recommended to go to a teaching hospital & I am a complicated case. When I get to the teaching hospital I get the same thing. As far as therapy goes, I have been to therapy & therapists don't understand either. They recommend things that I have already done or that I am not physically able to do anymore. Life is more than just breathing because I hear a lot of times "at least you are alive", but at what price? They were worried about saving me at the time but we're not thinking toward adulthood. I'm technically not even supposed to be here so the problem is what I have been told since I am not supposed to be here there is no one to compare me too & I'm one in a million so all I do is suffer. I have cats that make me happy & I do try to have some joy. Unfortunately, as time goes on I'm getting worse so all those things are fading.
I have Medicare and receive disability. So things are a little different than traditional insurance. I have had to get myself into these hospitals including Mayo because I don't have anyone really following me except for a local Endo who is clueless & I'm lucky I get what I get & I have a home heai agency I see for a GP which can't do much for me. Other than that I'm on my own & it's always been that way.