In 2002 I was diagnosed with triple negative inflammatory breast cancer. That's one of the rarer nastier ones. I moved across the state five years after my diagnosis, and during my last visit with my oncologist I asked, 'Why am I still here?' He replied after a moment's thought, 'Many things happened at just the right time.' That has become my definition of a miracle. Evidently I was not/am not a classic cancer patient. The word 'survivor' has always been very off-putting. I'm much much more, thank you very much. Cancer is not the biggest crisis and living well beyond it is not my greatest achievement. I consider myself a cancer graduate. I did my under grad work the year my wonderful brother-in-law and his wife stayed with us a week out of every month while he had treatment for his brain cancer at OHSU. My grad work was my own IBC several year later. Going through chemo with Marvin, who was hospitalized for 3 days each month, and seeing him pull himself out of his chemo stupor so he could travel home several days later, made my see my 'aggressive chemo' as totally doable.
I am a graduate. I did the work, put in the time, learned a lot, paid the dues and came out on the other side. I have a responsibility to use what I've learned. It does not define me, but it has given me some unique perspectives and skills.
And one thing I'd like to tell the community, is to stop using war words at cancer patients. We are not warriors. If anything, our medical teams are the warriors. We are the battle field, and our only job is to stay alive. We do not have to have a positive attitude, fight the cancer- what the hell do you actually think we can do???- or any of the other well meaning classic advice bits people say when they have no clue what they are talking about. Stay alive. Be as kind to yourself as possible. Ask for help when you need it. You are not at war.
If you want to know what aggressive chemo is like watch the first Indiana Jones movie. You meet Mariam in her bar engaged in a drinking contest. The booze is the chemo. The large dude across the table is cancer. She drinks him under the table. That's how you win at chemo.
I was 14 when diagnosed. I didn't want that poison put in me, even though I knew I would die without it. Now I am 44. I had open heart surgery to replace my aortic valve when I was 39. Now my other valves are bad. I am on oxygen, I take 20 pills a day. I am robbing my kids of their childhood because I am not physically capable of doing everything I wish I could do with them. This is not what I consider surviving. It's heartbreaking to see my kids disappointed because I can't do what their friends parents do. It's a living hell. I didn't survive cancer. The poison I was given then has come back for me. Everyone thinks I am so strong and all this bullshit. If they only knew what goes on inside my head. I don't feel sorry for myself. I'm not looking for pity. I am angry. I didn't want treatment but I was ignored. If I had to do it all over again, I would still say no. If I would have known I should not have had kids because every time I got pregnant it did more damage to my heart...with as much as I love my kids and would trade them for nothing, I would not have had them. Now I worry about them. And yes they each have different medical problems and yes I blame the treatments I was given. This isn't surviving. It's a timebomb that will explode. Only God knows when.
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