Thursday, June 23, 2011


I'm cranky.

I shouldn't be. I'm finally able to sleep in my bed again after a week on the couch in a upright position. I'm so cranky and irritable that I feel like I want to crawl out of my skin. Is this a side effect from one of the medications I'm taking? After a Google search this morning, I figured out that the obnoxiously annoying leg cramps I've been having might be caused by the estrogen replacement pills I need to ward off the symptoms of menopause. And the anti-inflammatory pill might be to blame for the nausea and racing heartbeat I've been blessed with for a week. Interesting that no one warned me about those symptoms since the information I read online claimed they were both serious side-effects and I should stop taking the medication immediately. Now, as I look at the computer screen, I'm realizing that my vision is blurred. I keep rubbing my eyes to clear the doubled letters, but it's not helping. Maybe I'm just tired. Or maybe I've developed a case of hypochondria? Whatever it is, it's annoying and I don't want to deal with any of this right now.

I'm so angry at the way I'm being treated by the radiation oncology and medical oncology departments at Sloan-Kettering. Until now, I've been so happy with my care. I know I mentioned the fiasco with the woman in the radiation oncology department in my last post, but now the medical oncology (chemo) department has gotten ahold of the stupid pills and I've been dealing with that craziness for two days.

The phone rang yesterday. "Hello?"

"Hi Suzanne, I'm calling from Dr. Gorsky's office. I've just gotten word that you'd like to change your treatment start date to July 20th, so..."

"July 18th." Seriously? What is WRONG with these people? July 20th wasn't even one of the options in the July 11th or July 18th discussion a few days ago. I'm really not in the mood to argue with another mindless hack who can only read and spit back information instead of listening to what I'm actually saying.

"Oh, July 18th? Oh, ok. So, I'm gonna go ahead and cancel your appointment with Dr. Gorsky this coming Monday, the 27th."

"Why are you canceling it?"

"Well, because you said you want to start your treatment on July 20th."


"Right, the 18th. That means you aren't coming in on Monday for your first treatment."

"I was never coming in on Monday for a treatment. Dr. Gorsky wanted to see me for a follow-up two weeks after my surgery to see how I'm healing and when she thinks it's best to start treatments so we can work it around my wedding."

"Hmmm...Dr. Gorsky told me you were starting your chemo on Monday."

"Why and HOW could she say that? I haven't even had my radiation simulation yet. I can't start radiation until two weeks after I do that, and I can't start the chemo until the day I start the radiation. I only had surgery a week ago."

"Oh. Ok. Well, I guess you can still come in and talk to Dr. Gorsky about whatever you want to talk about on Monday."

Are you kidding me? Is this girl listening to anything I'm saying? I know I'm speaking clearly. I'm not taking Vicodin anymore!

"Dr. Gorsky wanted me to come in. It wasn't to start treatments. She wanted me to follow up two weeks and three weeks after surgery. Do you see the appointment for the following week in there as well? Why would she schedule that if she wanted me to start treatments this Monday?"

"Yes, I see that. I'll cancel that one. I'm just going by what Dr. Gorsky told me. She's on vacation this week, but I'll e-mail her and let you know what she says tomorrow."


Of course she's on vacation. I've been working around doctors' vacation schedules for the last two months. It's amazing they actually found the time to take out my uterus in between travels. I'll wait and see what this moron comes back with tomorrow, but I'm really getting annoyed. Do these people talk to each other? The two departments are supposed to coordinate my treatments and work together. Seriously, the right hand doesn't know what the left hand is doing and I'm stuck in the middle.

I can't wait to go for my follow-up with Dr. Leitao next week and tell him what's been going on. And just wait until he sees the real me, complete with fight-back attitude, for the first time. If he tells me the cancer hasn't spread to my lymph nodes, he's gonna be in for a shock when I tell him I'm gonna wait until after my wedding to start treatments. I've put my life on hold to work around everyone else's schedules long enough! Now it's time some accommodations are made for my schedule. After all, it's my life. Shouldn't I have a say in how I live it?

The phone rang this morning. "Hello?"

"Hi, I'm calling back from Dr. Gorsky's office. I spoke to her and she said it's fine that you keep your appointment on Monday to talk to her, but you definitely need to start your chemo on the same day you start your radiation on July 20th."

Holy shit. Is this girl insane?

"It's the 18th. And I know I need to start the chemo on the same day I start the radiation. That was never an issue. The problem was that you were telling me I was supposed to start my treatments this Monday when that was never the case."

"Ok, so we'll see you Monday when you come in to talk to Dr. Gorsky. Bye!"


Seriously? Did that just happen? This girl has no idea what's going on. She e-mailed Dr. Gorsky while she was on vacation to discuss questions I didn't even have. Questions that make me look like a complete idiot. Can I just get all of these people in one room for five minutes to explain what I want to do with my body? Can we all just get on the same page instead of leaping all over the book?

So, here it is. I'll go for my radiation simulation on Monday, even though I still think I'm too swollen for an accurate mold of my body. Then I'll have an appointment with Dr. Gorsky to discuss my treatment and make sure she'll hold true to her words from our first meeting when she promised she would let me do the third chemo cycle four weeks after the second, instead of three. If I'm forced to start before my wedding, July 18th will start the first cycle, August 8th would start my second, and my third would land on August 29th, the Monday before my wedding, which just won't work for me. If she lets me wait an extra week, which she swore she would, the wedding will be almost four weeks after my second treatment. That will allow my body some recovery time, so hopefully I won't be sick. Then I'll go right back for my third treatment on the Monday (or Tuesday if they skip Labor Day) after my wedding, and life can move on.

Why do I feel like she's gonna tell me she never said she'd do that? I have witnesses! My mom and Jimmi both heard her say it! I know she said it! I wish these people would stop making me feel like I'm going crazy!

I'm not crazy. I just can't let anything interfere with Jimmi's Five Year Plan. It's funny, I really didn't even think about the night he mentioned the plan until a few months after we got engaged. It's pretty ironic, actually. When Jimmi and I first started dating, he was an immature, twenty-five year-old rocker boy. I was a thirty-one year-old mother of two boys. Our lives were on completely different paths. He was avoiding commitment and I was begging for him to put a label on our relationship. As we sat in his car after one of his shows, he said to me, "Don't worry about what we are now. We're on a five-year plan. No matter what happens, in five years, you and I will be married." I knew he was just trying to shut me up. He would've said anything to make me stop asking for more than he was willing to give.

Whether Jimmi meant it or not, the night he mentioned his brilliant five-year plan was in September of 2006.

I know I'm bouncing back and forth between topics tonight. It's been a few days since I've written and my mind is jumbled with everything I want to say. But I'll close with a poem my 10 year-old son, Dylan, wrote at school on the day of my surgery. I found it when he emptied out his backpack onto the kitchen table on the last day of school, and I read it with an aching heart and a quivering lip. You have no idea how much I hate that I'm making my babies sad.

I Am Dylan

I am worried and sad
I wonder about how my mom will feel after the operation
I hear pencils moving and book pages turning
I see classmates and fish in a tank
I want my mom to recover quickly
I am worried and sad
I pretend to be happy
I feel terrified for my mom
I touch my forehead and think
I worry about Mom's operation
I cry about my mother's cancer
I am worried and sad
I understand she will get better
I say doctors caught the cancer early
I dream of the day my mom recovers
I try to cheer up
I hope to visit my mom soon
I am worried and sad

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