Wednesday, March 2, 2011

One of the Crowd

Ok so the experience at Staten Island University Hospital (SIUH as it's known in the hood) made me think more about Sloan and why I'm glad I'm there.

I mean when you're in NYC and you get diagnosed with cancer you have a million choices, we are very lucky here. If you don't realize how lucky we are, a woman landed in NYC yesterday from Haiti. She has Stage 3 breast cancer and the only radiation center in Port Au Prince was leveled in last year's earthquake. It took a year but Kirsten Gillebrand got her treatment here, so that she can live. Think about that.

So for me Sloan was a no brainer, not just cause Dr. Chaloub wanted me to go there, but because I was already in their system as a "previvor". Now the way Sloan works is you call an 800 number and you tell them what you have. They will give you a fax number and you fax them all kinds of test results. Then they find a team available to help you and you get a call with a name and date and instructions of where to go. You then go to the accounting department, they take all your insurance info and the names of every elementary school teacher you ever had and you get your Sloan card. I already had one from my first apt. with Dr. Mangino, my breast surgeon who monitored me for breast cancer. Last year she saw a mole on my leg she didn't like, oh why, oh why did I never cough in front of her!

The advantage to a place like Sloan is it's huge, I was diagnosed on Thurs. 1/20, had my first oncology appointment on Mon. 1/24 and my first chemo appointment was Thurs. 1/27. They got me started on my treatment within a week. Because they can. SIUH would have taken more time to find a chemo slot, I would likely still be waiting to get a mediport installed. That doesn't mean the quality of care would be less there. SIUH has great oncologists and cisplatin is the same no matter what borough is it administered.

But let me tell you why I really like being at Sloan. No matter what building I walk into, no matter what kind of doctor I'm seeing, no matter what nurses or front desk people or PA's I come across, they all have the same attitude. "What's your diagnosis?" "Stage 4 lung cancer." "Oh welcome to the club, we've got t-shirts."

I'm not unique, I'm not a carnival attraction. I'm an advanced stage cancer patient. This is what Sloan does. All around me are people in a similar or even the exact same boat as me. You have a symptom, we have a solution. You have a need, we have someone for you to talk to. But you're among friends, friends with a sucky disease, but friends.

At chemo we all look the same. Super short hair but smiling. We're drinking our drinks, writing in our totals on our hydration chart. We emerge from the bathroom with a smirk cause we just did some damn good pee'ing and I get to put a big ole 600'ccs on my chart and get that "good job!" from my nurse.

I am still debating whether or not I am going to blog about it, but I went to a healing mass at my parents' church at their request. I went because they wanted me to go, but just because I'm not Catholic doesn't mean I don't respect and believe in the power of the healing mass. I would explain why but I am afraid if I post too much of my pagan logic, people might get offended by it. Only cause we use different words to describe things and we pagans tend to make things sound a little silly. But the power of this mass was not lost on me.

But the most powerful part of the mass was seeing my old friends from high school. I went to high school with Christine, but I also got to know her sisters and mom very well. John and I had our very first kiss at their New Year's Eve Party 1993. They are the most wonderful clan of women and I love them dearly. Well last year their mom was diagnosed with lung cancer and like me it's in both of her lungs and brain. Her cancer almost killed her, I had a nagging cough. When I was first diagnosed, she was the very first person I thought of.

Knowing I had sister in this fight is part of the reason I was able to keep it together. If she could face this with the courage and grace that I knew she was, I could do it too. So part of my reason to go to that mass was to see my sister soldier. When she walked in, it took everything I had not to run like an idiot across the pews. We went over and we all embraced. But embracing her was like nothing I can explain. It was powerful and beautiful. And the best part, the smiling, the comparing of port sizes, the hair length discussions, the sticking our tongues out when the words "brain radiation" were uttered. You see we're both on the other side of surrender, so these conversations come easily, they flow like talking about the weather or the price of milk. She spent most of the mass looking back and me and John and winking at us.

At SIUH I was a minor celebrity. One of the docs who saw me in the ER on Wed. told us that he was behind the scenes the day I was diagnosed and they were looking for that nonexistent PE (way back on 1/20). He was one of the docs trying to decide what to do with me that day (they had flirted with the idea of admitting me to stage me and then decided to let me just go to Sloan). I don't mind that he came to see me. I minded the pity with which he looked at me, the "aww" he gave me when he asked if I had children. I mean not only was I in the midst of my body giving out on me, but now I needed this guy to remind me that I have advanced stage cancer. I kept wanting to say "I'm not terminal yet you asshole how about you help me with this whole diarrhea thing or you can just move along!"

You see at SIUH I wouldn't have been the only cancer patient being treated, but I would have been the only Stage 4 lung cancer patient under 40. And I just don't want to be unique. I like being one of the crowd. I like knowing that Mrs. Kim will always be across the hall from me at chemo, with her port that she didn't want either and 6 hours of peeing her brains out. I like blending in, it's nice.

2 comments:

  1. Jaime,
    I love your post. I am so happy you went to mass and found comfort and friendship, most importantly.

    As far as not wanting to be pitied...i hear that...but my dear...you will always be unique...different...just you......your creativity...your strength of soul and spirit...and your optimism make you that way...

    that is the you that we love! Hang in there!
    Luv ya! miss ya!

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  2. Jaime, you inspire me every day!

    ReplyDelete