Tuesday, May 10, 2011

And if I Thought it Couldn't Get Any Worse...

I left Dr. Leitao's office at Memorial Sloan-Kettering feeling hopeful and even a little bit relieved that maybe I had another, less drastic option to choose for my cancer treatment. My mom, Jimmi and I went out to lunch with smiles on our faces and a little less weight on our shoulders. We knew we still had to wait for everyone to review the slides from the LEEP, but, honestly, no one seemed too concerned, so why should we?

Mother's Day Weekend was nice and the kids and I spent the day at the movies and playing mini-golf.

Monday, May 9th, seemed to be a normal day as well. I had finally gone back to the gym after having to skip a week for doctors' appointments, and I was feeling refreshed. Clean and dripping wet after a nice shower, I ran to answer the phone I heard ringing in the bedroom. But I paused when I saw the caller ID. It was Dr. Tobias' office. Weird, I thought. Why would he be calling me? Maybe he wants to see if I'm planning on going with him for my treatment. How do I tell him I've chosen Dr. Leitao instead? Ok, here it goes.

"Hello?" "Hi, Suzanne, It's Dr. Tobias. The reason I'm calling you is because I finally got your slides here and had a chance to review them myself. It's not good news. Apparently, you have a very rare and aggressive form of cancer that will make anything less than a full hysterectomy impossible. You'll also need to have radiation and chemotherapy following surgery. I know time is of the essence for you because of your upcoming wedding, but with the hair loss, I'm not sure you'll want to go through with it in September anyway."

Dead silence.

The first thing I could muster up was, "I'm definitely gonna lose my hair?" How vain was that? How could I be thinking about THAT?? Wait. I'm getting MARRIED. This CAN'T be happening. I've been planning this for almost a year. It took me over 4 1/2 years to get him to even consider marriage at all. Why is this happening?? Why is this happening NOW??? "Yes, unfortunately the chemo we need to use on a cancer that's this aggressive will make your hair fall out."

Dead silence.

Wait. I'm alone right now. He's telling me this on the phone and I'm all alone. Jimmi is at work. My mom is in Tennessee visiting my brother. No one is here to hug me and tell me it's gonna be ok. I'm alone.

I got up enough strength to make the words come out of my mouth and said, "I'm meeting with Dr. Ferrante (my regular gyn) tomorrow to discuss my options and I'll get back to you." Dr. Tobias closed with, "Ok, I'll give him a call now and fill him in, but don't wait to long. We need to take care of this as soon as possible."

I hung up the phone and stared out the window, my hair still dripping wet from the shower. My hair. Oh my GOD, my beautiful hair. The hair I'd been growing out for a year so it would be perfect on my wedding day. The hair I twirl around my finger when I get nervous. The hair my babies used to play with while I was nursing them.  Gone. It will be gone.

All I could do was cry.

I cried so hard, my stomach hurt. I felt sick. I HATE getting sick. Oh, GOD, I'm gonna get sick. A lot. Chemo will make me so sick. How will I explain this to my kids? How can I let them watch me go through this? They'll be so scared. Why?? Why now??

I called my mom in Tennessee. I told her what Dr. Tobias had said, but I couldn't get it out without sobbing. I was literally on my knees, on my bedroom floor, hysterical. My mom tried to calm me down and finally announced that she and my dad would be on the first plane back home.

I called Jimmi at work. Same story. Same sobbing. Nothing was helping to ease the pain.

I went back to the bathroom to dry my hair. I gazed at it in the mirror for a long time through red, puffy eyes. I was talking to myself. Babbling about who knows what. I felt helpless and hopeless.

I went downstairs and did the only thing I thought might give me some comfort. I called and left messages for Dr. Mensah and Dr. Leitao, hoping they would tell me Dr. Tobias was crazy and didn't know what he was talking about.

Dr. Mensah called back first. She told me that she didn't have my slides from the LEEP, so it was hard to  give me a definite answer, but it's possible I could have something that's worse than everyone thought, though it's very rare. She told me to wait for Dr. Leitao to call me and see what he says. Not very helpful.

Dr. Leitao finally called back at 4:30. After telling him what Dr. Tobias had said, Dr. Leitao said, "There's only one form of cervical cancer that would change things that drastically. It's very, very rare, but it's also very aggressive. It's called Small Cell Neuroendocrine Carcinoma. Did he use those exact words?" I said, "Honestly, I don't even know what words he used. But I don't think so." Dr. Leitao said that unless that is what I have, it can't be that bad. But if it IS Small Cell, we'll need to talk. Yes, there will be radiation. Yes, there will be chemo. He told me to sit tight and hang in there until his pathologist looks at the slides. Sometimes they see different things than other pathologists. Of course, to make things even more exciting, Dr. Leitao was leaving for a robotic surgery convention the next night in Greece. Unless things were rushed along very quickly, I'd need to wait until Monday (May 16th) to get his take on everything. Before hanging up he asked me to have at least the pathology report sent to his office and he'd try to look it over as soon as possible. Then he encouraged me to get moving on my egg retrieval cycle sooner than later.

I was numb.

I helped Justin with a school project and I cooked dinner. I was getting the kids to bed at about 9:00 pm when the phone rang. A 212 exchange meant Dr. Leitao. I ran to the privacy of my bedroom and took the call, hoping for a miracle.

"Hi Suzanne, it's Dr, Leitao. I still don't have the actual biopsy slides, but I do have the pathology report. I can see why Dr. Tobias would say what he said. The report doesn't come right out and say Small Cell, but it does say that your type of cancer is showing many of the characteristics of it. I'm not going to say it definitely is or isn't until my pathologist takes a look, so just try to relax until Monday. We'll deal with whatever it is at that point."

Silence. Can there PLEASE be someone to tell me SOMETHING good?

I made the mistake of doing a small amount of searching online about Small Cell Neuroendocrine Carcinoma. Bad idea. Bad prognosis. Did you know only 3% of people with cervical cancer have THAT kind of cervical cancer?? I always knew I was a fucking over-achiever. Go me!

May 10, 2011. That's today. I woke up sweating with my heart racing. I e-mailed RMA to see if they could start my egg retrieval cycle immediately. Yes, they can. I'll start 11-14 days of injections in my stomach on Saturday to kick my ovaries into high gear. I'm sure the extra hormones will make me even nicer to deal with than just the cancer emotions that are strangling my spirit.

Ok, RMA is set up. Check. What's next?

Call Sloan-Kettering. Did they get my fucking slides yet? Not yet. They'll keep calling til they find them.

Ok. Find slides. Check. Next??

Meeting with Dr. Ferrante, my regular gyn to give him the rundown of every friggin' doctor appointment I've had in the last 2 weeks.

So, my mom, Jimmi and I head over to the office. This is becoming a habit. A habit I'd really like to break. Dr. Ferrante comes in telling us he already has a plan of what he wants me to do, but he wants to hear what I think first.

I tell him about the week from Hell and what each doctor had said at each appointment. Then I got to the phone call from Dr. Tobias yesterday. I then told him that when I spoke to Dr. Leitao afterwards, he said unless it was Small Cell neu..."It is." "Excuse me??" Dr. Ferrante continued, "It is Small Cell Neuroendocrine Carcinoma."


"We need to be very aggressive with this and take care of it quickly. I know you're supposed to be getting married, but maybe you can just postpone the wedding. Your health comes first."

Postpone the wedding?? I'm sorry, but FUCK YOU! No, I didn't say that. I didn't say much of anything. I need good news. SOMEONE give me good news.

"You'll definitely need radiation and chemotherapy." "They make great wigs." "Maybe they can stagger your treatments around your wedding." "This is a very dangerous cancer."

Spinning. I'm spinning.

And here I sit. It's 10:55 pm and I'm still in shock. I've been crying on and off all day. I'm trying to be strong for my kids, but the truth is, I'm not strong. I'm scared to death. I don't know how to do any of this. I don't want to do any of this. I just want to ignore it and maybe it'll go I away. I want to rewind to a few months ago when the plan was to get married on September 3rd, go to Bora Bora for 12 days and make some babies.


  1. You are not alone. There is a small army of people who are preparing themselves to go through this with you, every step of the way. And in any small moments when you forget it, we will remind you that YOU ARE A FIGHTER, A FORCE TO BE RECKONED WITH, and a FIERCELY DEVOTED MOTHER WHO WOULD WALK THROUGH FIRE FOR HER KIDS. There will be a happy ending to this sad story, of *course* there will, because cancer ain't never gone up against as formidable a foe as Suzanne before.

    One minute at a time. Eye on the prize. xoxoxo.

  2. Wow, Suzanne, I am so sorry that you are going through this. You're never alone when you have so many more people out there who care about you, know what's happening, and are only a phone call away. I just got back in Jersey tonight, but understand our plans being canceled.

    Perhaps you can keep your hair in the form of a wig. Some wigs are made of human hair. Go to your salon, have it cut very short, and find a place that can take your hair and make it into a wig.

    You're loved.