Let's get this straight. I have Stage IV breast cancer. Now when a doctor says you're Stage IV, it's really a broad definition. Earlier versions of breast cancer come in gradations. Stage IIa means a certain size tumor and no cancer in the the lymph nodes. Stage IIb means a certain size tumor but cancer in the lymph nodes. Once you get to Stage IV it can mean anything from "You have a touch of it in the liver" to "Man, it's everywhere, brain, bones, lungs, liver." So I am lumped into a big group, and before I became Stage IV myself, I also thought Stage IV meant "Man, it's everywhere, you're dead." So since the cancer for me is only in the liver, I prefer to call myself Stage IV lite. I've created my own gradation.
Here's the other thing we need to get straight. I know I'm in for a long haul. I know this m-fing cancer can come roaring back at any moment and take me over. I know there are risks to surgery because of infection and that infection could mean not being able to do chemo when the cancer comes unexpectedly roaring back. I now know that the main drug that will be used to inhibit my HER2+ cancer, Herceptin, has been known to stop working, but luckily there are other drugs ready to go. I know that there are many people who become debilitated by this disease and have to stop working and focus entirely on nothing but fighting the cancer. I know all the bad news. And the bad news I don't know, I don't want to know.
Because here's the deal. I want to focus on getting better, starting maintenance with Herceptin, and get back to living my life. I want my hair back and I want to dye it purple or whatever I damn well please. I want to go through a day without crippling exhaustion. I want the luxury of only going to the chemo lounge every 3 weeks for my maintenance Herceptin. I want to be able to take out my own garbage. I want the feeling back in my feet (that's called neuropathy and it's one of the side effects of chemo). I want to be able to taste food again.
I want to live.
But for some reason I am constantly being told the cautionary tale. My doctor tries to dissuade me from a bilateral mastectomy because what if the cancer roars back and I get an infection from the surgery. She tells me this in spite of the fact that my liver numbers are back to normal, my tumor markers are down by 61% after only 3 chemos, and all indications are that my scan will be clean for the liver (I'll be the hopeful one here).
I am told by several metastatic breast cancer survivors that I can get SSI disability immediately since I have metastatic cancer. I finally get so fed up hearing this that I tell the last person uttering these words to me that I refuse to think of disability at this point because that would be like saying I give up. Note: I have short- and long-term disability through my job and am using intermittent short-term disability to get through the chemotherapy and the surgery, I just don't want to go on to permanent disability. I am only 47 years old, for God's sake, and I don't have a husband to provide medical insurance.
I am told my another metastatic breast cancer survivor who has been living with the disease for years, "You must feel ripped off."
My reply, "No. I don't feel ripped off. If a year from now I'm on my death bed, I'll feel ripped off. But now, no."
Finding life-focused long-term survivors of metastatic breast cancer has been more challenging than I thought it would be. I understand that this disease is hard to live with, but even the survivors who haven't had the disease spread seem to focus on the disease and it's badness over just living. What is worse is that all of this has been coming at me during my lowest, sickest, most exhausted point in my treatment. The result has been that in my head I've begun to settle. I've started thinking of end of life, started thinking of more chemo, started to assume I'll be one of the normal stats for metastatic breast cancer, dead within 2 to 3 years. I can't afford to think that way.
The other result is that I'm pissed. I'm pissed that I have this disease and I'm sick and tired of hearing the bad news. For cripes sake, it's like a bucket full of crabs. If one crab tries to crawl out of the bucket, the other crabs pull the fleeing crab back down. So I've stopped looking at online groups for advanced breast cancer, I'm limiting my contact with people I know have been cautionary with me before, and I sure as hell need to have a talk with my doctor about exactly who she has as a patient.
I was watching Eddie Izzard last night. He performed a piece about his gran and her life force. Three strokes and she would not go. "I have stuff to to do," gran proclaims. That's actually been the most helpful bit I've heard in weeks, gran and her life force. It's true. Some people have such a strong life force that they refuse to leave. Certainly, I have enough piss and vinegar that I think I qualify. Like gran, I have stuff to do. Plus, as I told my Uncle Mike and Aunt Carole last night, plus, I don't want the young lady who insulted me by calling me terminally ill to be dancing on my grave. Because I plan on dancing on hers.
Wish me luck in finding more focused on life survivors. And pray I have the strength to tell the cautionary tale tellers to shut the hell up. Chemotherapy and surgery are hard enough to go through without people telling me how bad it's going to be. Plus, we've already gotten it straight that I want to live. Damnit.
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