Wednesday, March 29, 2017

I am not Superwoman.

I am not superwoman.

I'm a MUTANT- What's your superpower- a gift from Alyssa. 

I don't make cancer look good.

The pic I said I wouldn't share. Lovely. Cancer is sexy. 

I don't feel good on cancer.

I'm tired of cancer.

Cancering is our normal.

Shark bite. ooh ha ha. 
In May of 2012, after a lump in my arm came back as sarcoma- the docs took me seriously and facilitated the breast MRI for the lump I felt, which despite my high risk status- had been delayed and delayed and delayed. It was 3 tumors. Invasive Ductal Carcinoma. Advocating for myself and kids is time consuming and exhausting, but worth it. The earlier we catch things, the better chance we have to treat them before they spread.

About a year later, the breast cancer spread to my lungs and bones. I started chemo October 2013 and have been on some sort of chemo/ immunotherapy since then. The amount of money pumped into these veins would have bought our little home here in paradise outright. The life expectancy after mets is 3-5 years. Through a group online- I found resources and women with mets who are surviving for decades. Hope.

2.5 years ago, the day after Christmas, we learned there was a tumor in my brain. The life expectancy after brain mets is 2-2.5 years. Radiation is not usually recommended for mutants like me. It causes new cancers. The thing is those cancers could take several years to develop. We have to treat the tumor there before it killed me. By the time I had the radiation- there were 2 more tumors- it was the best odds. Lucky 3 again?  The hope is to live to face the next round. It totally messes with your mind.

In May, It will be 5 years that I've been cancering and yes that too messes with my mind. I've had good responses to chemo. I have been lucky in a lot of respects. I've lost my hair, had it grow back, had aches, dealt with peripheral neuropathy and a whole ton of fatigue. I'd tell you some of the less glamorous potty stories, but well we don't really need to share every-thing. My symptoms have been mild compared to what many go through. I am in the DEAD ZONE.

The Dead Zone used to be the oldest age my family members were before cancer got them. That was BC - Before Cancer. Then the timetable swivels. Now it's prognosis and progression free survival numbers. Screw the numbers. I am not a number.

I feel like everyone around me has cancer. They are not numbers.

Its hard to see so many friends suffering. I want to help. I feel limited by cancer. I go by how I feel, knowing how quick it can change and although the numbers for survival- give a ballpark idea- they do not define me or my path. I do. I know where this path ends, I just don't know how, yet.. None of us gets out alive. Life by nature is terminal. We try to eek out every last good drop while we can.

I try to stay positive. It's not easy.

I take the punches with the good turns. My good days outnumber the bad. I keep hope because the alternative is not an option. I don't hope for a cure for cancer, I hope that someday we will prevent it altogether. Just as I once hoped to lead the charge for the cure- I see my children learning, thinking, passionate about figuring this cancer stuff out. Our lives depend on it.

I am not superwoman. I am just a woman with Li- Fraumeni Syndrome and
Stage 4 cancer trying to live each day.

1 comment:

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)