Thursday, June 2, 2011

Mixed Emotions

I don't even know where to begin.

Today, my emotions have run from one end of the spectrum to the other and have stopped everywhere in between. I woke up knowing it would be a very long, and mentally draining day, but I had no idea the extent of what it would become.

I brought the kids to the bus stop at 8:30, like I always do. As I sat in my car and watched them wait by the curb, one of my neighbors from the development, Debbie, pulled up along side of me. I only know her in passing, but we do the friendly smile and wave when we see each other. This time was different. She rolled down the window and gave me a sympathetic look. "How are you feeling?" she asked. I was aware that Debbie knew about my health situation because another neighbor, who I'm much more friendly with, told me she had mentioned it to her since Debbie's husband also has cancer.

"I've had better months." I forced a smile.

Debbie put her car in park and came right over to my window. "You know my husband is very sick, too, right?" I nodded while immediately feeling guilty for not asking about him sooner. "What kind does he have again?" I questioned. "Double lung and brain. And it's all up the lymph nodes in his chest too. He just had his second brain surgery. It just keeps spreading and they can't stop it. The man shouldn't even be around anymore, but he keeps fighting."

My stomach sank. Will that be me?

She continued, "You know you're number seven, right?" I gave her a puzzled look. "You're the seventh person in the development of 22 houses with cancer. And that doesn't include the two dogs who have it too."


"It's the water," she said with confidence. "We live a mile away from the old dump. They said they cleaned it up, but they didn't. We had well water for the first five years here before they switched to city water a year ago. All the pollutants from the dump were in the water."

The movie Erin Brocovich flashed in my head.

"I've contacted a lawyer and I'm waiting to see what she says we should do."

I couldn't speak until I caught my breath. "Well, I know cervical cancer is caused by HPV and I had that. But I have a really rare form called Small Cell..." Debbie cut me off, "Yeah, Small Cell Carcinoma. That's what Frank has too."

My heart stopped.

I swear if this could've been avoided by people actually doing their jobs, I'm gonna lose my mind. I thought back a few years. They tested the water a couple of times when we still had the well. I remember them doing it. But, wait. Did I ever get the results?


And they tested it again after they switched to city water, because I had to leave it out overnight and put it on the doorstep for them at like 6:00 am so they could collect it. Did I ever get results?


Holy CRAP! What if she's right?

Debbie and I exchanged phone numbers and went on our way. I drove quietly back to my house wondering if there was a way to prove anything. I called my neighbor, Sue, who owns one of the dogs with cancer.

"Did you know there are seven people and five dogs in the development with cancer?" I blurted out without even a hello. "Seven?" she asked, "I thought it was five. Either way, it's a pretty high number."

"Did you ever get the results of your water test?" I probed.

Sue thought for a minute, "Hmmm...I don't think I did."

Not cool. Are they hiding something? Sue offered to go to the town and ask for the results of the tests, but I didn't want them to get suspicious and destroy records before we had legal advice on the matter. "I have to be at Sloan-Kettering all day today," I told her. "Why don't I mention it to them first and see if it really does seem odd?" We agreed on the plan and said our good-byes.

At 10:45 am, Jimmi and I were on our way to meet my mom at Sloan-Kettering for my pre-admission testing and my consultation with the radiation oncologist. I called my brother, Vince (the lawyer), from the car.

"What?" He was floored when I told him about the strange cancer coincidence in my neighborhood. "That sounds really high. You might have something there." I told him I'd ask the doctor and he said he'd check into firms in the area that handle environmental law. "You take care of you. I'll see what I can find on this."

We pulled into the circular driveway at Sloan-Kettering and handed the keys to the valet. My mom was sitting on a bench waiting in the sun. She stood up with a smile as we walked toward her, and we all went inside together.

We were sent to the usual chairs to wait for Lisa, Dr. Leitao's nurse. As soon as we sat down, I saw an e-mail pop up on my phone from my nurse, Jill, at RMA. "PGD Results" said the subject.

"It's the results of the embryo tests!!" I said excitedly. "Let's see how many boys and how many girls we have!"

I opened the e-mail.

"Hi Suzanne, Wanted to let you know that out of the 14 blasts that were frozen, 12 of them are chromosomally normal. I have the breakdown of males and females if you would like."

Oh, HELL, yes!!! I mean, "Yes, I would like those results please."

Tick tock, tick tock. E-mail! Click to open.

"You have six males and six females."

I have a little girl. I have SIX little girls! And six little boys!! Well, I guess they were right that the sperm are usually 50% male and 50% female. So much for the gender selection spinning! It's all good. Six females. I know that will be enough for us to have one baby girl to love.

"Suzanne?" Lisa's voice snapped me back to reality. Jimmi, my mom and I got up like a caravan and followed Lisa to an office. She went over all of the hospital information and what to expect before, during and after surgery.

We were all in an unusually good mood, and even made jokes as we talked about my day before surgery liquid diet, "Vodka doesn't count!" And my catheter, "Can I clip the bag to the bed at night? I'd really hate to wake up and find the cats playing with it." Lisa talked to us for 30 minutes about everything I need to know, and then I remembered to ask her about the high cancer rate in my development. "That's really high," she said with a confused look. "You might want to call someone to check into the water."


After Lisa finished, we were off to meet the anesthesiologist. I made sure to tell him that I needed him to give me something that would keep me from getting nauseous after surgery. He assured me that he would mix up a cocktail that would keep everything down so I wouldn't have a problem.  He then went on to tell me, "You're an anesthesiologist's dream." "Awww, thanks! Why's that?" "You're thin, you're young and you're healthy." Yeah, I thought, except for this pesky cancer.

After that meeting, a nurse named Athena corralled us into yet another exam room to take my vitals. Height, weight, blood pressure, EKG and blood tests. Athena and I also laughed and joked. As she was writing in my chart, I started playing with the short stubs of hair hidden in the back of my head and I felt strangely at peace. This is happening. There's nothing I can do about it and I'm going to make the best of it. I love everyone I've met at Sloan-Kettering and I know I'm in good hands.

When Athena was done, we shoved off to the Radiation Oncology department. I was handed a clipboard with paperwork to fill out while I waited. As I wrote, I heard my mom and the woman next to me excitedly talking about the fact that they were both wearing the exact same kind of shoes. I giggled to myself. My mom is awesome.

"Ms. Paragano?"

We got up and followed the man, whose name escapes me, into another exam room. He offered us drinks, which we turned down, and left the room. Soon, the door opened again, and in walked a very flamboyant nurse with a very thick accent. "Hi, I'm Carlos! How are you?"

Oh, please don't think of the movie The Hangover. "Not at the table, Carlos!" Compose yourself, Suzanne!

As Carlos took my vitals, I joked that he could just walk down the hall and copy off of Athena since she'd already done the work. He was so happy and cheerful and, no offense, gay! He made me smile. He left the room a few minutes later, and as soon as he closed the door, Jimmi and I looked at each other and laughed! I said, "Were you thinking of The Hangover?" He said, "No! The butler in The Birdcage! He had the same shoes! 'I don like to wear da choose. Da choose mek me fall down.'" My mom didn't understand either joke, but chuckled along with us.

A few minutes later, the radiation oncologist came in and introduced herself, "Hi, I'm Dr. Sidebotham." She was very nice and incredibly thorough. She explained that I would need a 5 1/2 week course of radiation, along with the chemotherapy because they've found that the treatments work best together for the aggressive cancers.

"How often are the treatments over the 5 1/2 weeks?" I questioned, but I wasn't prepared for the answer. "Five days a week. Monday through Friday."

You're kidding. Oh my God.

"Every day?" She could see the shock on my face. "Yeah, some people don't know that. I guess you didn't."

Ya think??

"On days when you have a chemo treatment, you'll need to come in for radiation very early, at like 7:45 am, and then go up to have your chemo treatment when you're done. That way, we don't have to bring you back down after you have chemo because it's much more difficult."

I felt my previously light and optimistic mood turn darker. The smile was wiped from my face and all I could do was listen. No more jokes. No more peace.

Dr. Sidebotham wanted to order two more tests for me to have before my surgery. A PET scan and an MRI of my brain, just to make sure those sneaky little small cells weren't hiding anywhere the other doctors hadn't looked. And when exactly would I fit in those tests? I have one doctor-free day next week, and it WILL be spent with my matron of honor, Jen, at Foxwoods in Connecticut.

She explained the details of the PET scan. I would be injected with a dye full of sugar. Cancer cells metabolize faster than normal cells, so sugar is drawn to them. If they see an area of bright light on the screen, they know to be suspicious. "Oh, and you shouldn't be around small children for a few hours after the test, because you will be radioactive."

Cool. I wonder if I'll glow in the dark.

The PET scan doesn't work for the brain, which is why I need a separate MRI for that. Ok, more tests. Fun!

Now, onto the process of radiation. I had no idea how much prep-work was involved. First, a few weeks after surgery, I'll go to the office and they'll make a mold of my body. The mold will be used to make sure I lie in exactly the same position each time I have a treatment. Then, I'll drink a contrast dye so the doctor can clearly see my bowels and try to position the rays to avoid radiating them too much. Also, this is the best part, they'll soak a tampon in dye and insert it where tampons normally go so they can clearly see the vaginal canal. Then they'll run me through the x-ray machine or CT scan (I've lost track) and figure out where the radiation rays will go. Since they need to go in exactly the same place each time, after I'm lined up where they want me, they'll whip out a tattoo gun and give me about five blue, permanent dots to mark the spots. My mom swore she'd disown me if I ever got another tattoo. I wonder if this counts?

Wait, I think I may have combined the first two radiation appointments. Maybe the mold fitting is first and the contrast dye is done after the mold is made? It's all starting to blend. Anyway, after that's all done, I'll come back a few days later for my first treatment. They'll hit the dots with radiation rays and I'll be out in 15 minutes.

Now for the side effects...

Fatigue. "But you really won't know if it's the chemo or the radiation that's causing it. Just know you'll be very tired and you might have to give up a lot of your every day activities. Accept help when it's offered and don't try to do too much."

Diarrhea. "Because there's really no way to avoid the bowels, you probably won't be able to avoid having diarrhea. Plus with the chemo on top of it, you're pretty much guaranteed a few bouts."

Burning sensation in the vagina. "But you won't notice that unless you're sexually active, and you won't be able to have sex for a while anyway." Was that supposed to make me feel better?

Here's my favorite. Shortening and tightening of the vaginal canal. "They're already surgically shortening the canal, but the radiation is meant to shrink tissue. It will shrink in all directions. It will get shorter and tighter. We really suggest you use a dilator when the treatments are over. It should help with any discomfort during sex. Some people have to wear them for a few months, but you might need to do it your whole life."


I need to wear a medical sex toy so my vagina doesn't close up? Are you kidding me? Wow. We're gonna have a super romantic honeymoon. Oh, there's more? Hang on. "Sex will need to be less spontaneous from now on. You won't really have the estrogen flowing and the vaginal walls will be dry. But you can buy over the counter lubricants to help with that. It just needs to be a little more planned."

Well, I'm speechless now.

Dr. Sidebotham sent Jimmi and my mom out of the room so she could examine me. I needed more information. "So, will I ever enjoy sex again?" I didn't like the pause that followed my question. I liked her response even less, "You'll find a happy medium. You'll learn to make it work."

I can't get married. I can not marry Jimmi knowing our sex life is going to suck right from the beginning. It's not fair. Why is it that every time I think I'm finally getting strong enough to deal with all of this, something else slaps me right back into place?

"I recommend you both go see a sex therapist. They can help you work through this and figure out what might make it bearable."

Bearable, not amazing. Not great. Not even good.

She finished the exam and told me I would be ok. That stupid lump was working it's way back up my throat where it's taken residency over the last few weeks. Every time I try to evict it, it finds a way to move back in. I walked out into the reception area where my mom and Jimmi were waiting. They immediately stood up and met me at the desk.

"I need to make two more appointments." I said to the receptionist.

"Yes, a PET scan and a brain MRI. Hmmmm...let me see when we can fit you in."

"I'll already be here on Monday for my chemo consult. Can we do at least one of them then?"

He set me up for the PET scan on Monday morning and the MRI next Friday. I didn't say much as we walked out except, "I hope you're ok with never having sex again." Jimmi looked at me, "Oh, stop. Is that what she said?" "No," I snapped. "It's just gonna suck."

I tried to readjust my head as we drove home. I needed to get into Mommy mode to pick up the kids, then into Happy mode to go up to Skylands Manor and finalize our wedding day details. My wedding day. It doesn't even seem real anymore. Like an impossible dream I keep trying to catch.

I hugged the boys as they got off the bus and let them know that their babysitter, Amanda, would be over soon so they needed to hurry up and do their homework. I never let on that my entire body was screaming inside. Anger. Frustration. Sadness. I didn't know what I felt.

Amanda arrived and Jimmi and I headed out again. We decided to have dinner at the restaurant where our rehearsal dinner will be held since we had never been there. Amazing choice! The food was excellent and I started to relax a little bit.

When we were done, we headed up to Skylands. It was the first time we had seen it without pouring rain or snow on the ground, and it was more beautiful than I had remembered. We met with Linda, our banquet manager, to go over food selections, times, vendor names and other details. Then I said, "Can we please go outside to where our ceremony will be held? Neither one of us has seen it because the weather has been bad both times we were here."


We walked outside the back door of the fabulous, stone mansion, built in 1924. Through the stone patio, down the steps, passed the trickling fountain and out onto the luscious grass. We looked out at the area they call Magnolia Lane. It's about the length of a football field, but much greener. I imagined it with all the chairs set up on either side of a rose petal-lined aisle, facing a beautifully, floral decorated arch where Jimmi and I will be standing in exactly three months.

I need to be well enough.

I need to be strong enough.

Three months.

I can do this.

1 comment:

  1. Suzanne,

    I may sound like a broken record, but I don't care. You are an amazingly strong, vibrant, love-filled woman and I believe you will walk down that rose petal-lined aisle in September, gazing into Jimmi's baby blue eyes! Your boys, your family and your friends will be overflowing with love! You can do this!

    With much admiration,
    Leah Collier