CLL
My parent's day lasted from 5 a.m. to 6 p.m. A long drive in the dark, hours and hours and hours of waiting and treatments and a long drive home during rush hour. For them it was just another trek to MD Anderson. Another day lost trying to attain more days.
I'm just so frustrated. Cancer is not something anyone should experience but the fact that it's terminal cancer makes it that much more unbearable. There is no light at the end of the tunnel. There aren't masses of people wearing orange and having fundraisers for Chronic Lymphocytic Leukemia. No specials on TV like there are for breast cancer...no conversation about it. And yet it is a disease that has no solution. You can't cut out your blood...it's not a tumor...it's every cell in your body.
I don't understand how we are a society who reinvents electronics every two months, a society that can land on the moon and build engineering feats; and yet we can't cure cancer. And if we could do you think that CLL would be first on the list?
I'm so damn tired of this disease being overlooked. I'm so tired of hearing "oh...you mean that adults can get leukemia?" Or "why doesn't he just get surgery?" Or "how can you get it into remission?"
Do you know what it's like to see these people who suffer from other forms of cancer? Each type is horrific but there are types involving tumors, there are types that are curable. And in a year or two or three they are done with this nightmare. But it doesn't end for people who have CLL. There is no "remission."There is no magic surgery.
Can you even imagine what it's like to not see a light at the end of the tunnel? To constantly wonder what nightmare lies behind the next corner. What experimental drug they'll give you; that could possibly kill you? Every drug has ten side effects; here you go, here are a dozen drugs. Try one, and if it doesn't kill you, be grateful.
Someone needs to stand up for CLL, someone needs to wear an orange ribbon, care about these adults who have children that need to be walked down the aisle and grandchildren they may never know the names of. And yet it's a disease that passes like a ship in the night. No parades or news specials or widespread knowledge.
I can't even process what life would be like without my Dad. I can't even handle scenes in movies where Dads walk their daughters down the aisle. Ten years he's had it. Ten years. Which is past the average span of survival. My Dad is perhaps one of the most stubborn people on earth and I know I share in that trait.
And I swear...if by chance I ever amassed some great amount of money or voice, I would bring this disease to the forefront. I would give it the money and recognition it deserves. I would wear an orange ribbon, and hold a parade, and put on a walk, and have fundraisers, and news specials, and I wouldn't stop until I saw an ocean of orange. I wouldn't stop until people not only knew, but cared about finding a cure for CLL.
I'm just so frustrated. Cancer is not something anyone should experience but the fact that it's terminal cancer makes it that much more unbearable. There is no light at the end of the tunnel. There aren't masses of people wearing orange and having fundraisers for Chronic Lymphocytic Leukemia. No specials on TV like there are for breast cancer...no conversation about it. And yet it is a disease that has no solution. You can't cut out your blood...it's not a tumor...it's every cell in your body.
I don't understand how we are a society who reinvents electronics every two months, a society that can land on the moon and build engineering feats; and yet we can't cure cancer. And if we could do you think that CLL would be first on the list?
I'm so damn tired of this disease being overlooked. I'm so tired of hearing "oh...you mean that adults can get leukemia?" Or "why doesn't he just get surgery?" Or "how can you get it into remission?"
Do you know what it's like to see these people who suffer from other forms of cancer? Each type is horrific but there are types involving tumors, there are types that are curable. And in a year or two or three they are done with this nightmare. But it doesn't end for people who have CLL. There is no "remission."There is no magic surgery.
Can you even imagine what it's like to not see a light at the end of the tunnel? To constantly wonder what nightmare lies behind the next corner. What experimental drug they'll give you; that could possibly kill you? Every drug has ten side effects; here you go, here are a dozen drugs. Try one, and if it doesn't kill you, be grateful.
Someone needs to stand up for CLL, someone needs to wear an orange ribbon, care about these adults who have children that need to be walked down the aisle and grandchildren they may never know the names of. And yet it's a disease that passes like a ship in the night. No parades or news specials or widespread knowledge.
I can't even process what life would be like without my Dad. I can't even handle scenes in movies where Dads walk their daughters down the aisle. Ten years he's had it. Ten years. Which is past the average span of survival. My Dad is perhaps one of the most stubborn people on earth and I know I share in that trait.
And I swear...if by chance I ever amassed some great amount of money or voice, I would bring this disease to the forefront. I would give it the money and recognition it deserves. I would wear an orange ribbon, and hold a parade, and put on a walk, and have fundraisers, and news specials, and I wouldn't stop until I saw an ocean of orange. I wouldn't stop until people not only knew, but cared about finding a cure for CLL.
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