Wednesday, July 13, 2011

Yes, That's My Final Answer

I've made a decision.

After over a week of deliberation and agonizing over the pros and cons of radiation, I've finally made a decision.

It's true, the side effects of the radiation scare the shit out of me...but so does dying. No, no one can guarantee that I'm going to die if I don't have radiation, and no one can guarantee I won't have horrible, long-term side effects if I do. That's the one thing I've learned for sure about this whole cancer thing.

There are no guarantees.

For the last week, I'd been flipping back and forth over which decision was best for me. The internal tug of war was draining every ounce of energy I had. I needed to come to a conclusion, and I needed to do it quickly.

Last night, after reading about a dozen horror stories about people who have been permanently damaged by radiation, I jumped up from my computer and yelled, "Oh, Hell no! I'm not doing it! Fuck that!" And the decision was made, just like that. But why did I still feel a nagging in my heart?

About an hour after my outburst, an e-mail arrived from my friend, Julie. Julie had questioned her friend, who is also a gynecology oncologist, to ask what his thoughts were about my treatment plan. I won't quote his response exactly, but the gist of it was pretty blunt. Small cell is treatable now. Do what the doctors say, because if it comes back, it won't be treatable again.

Talk about scaring the crap out of me!

So, basically, this guy is saying if I don't do the radiation I'm gonna die. And BAM! I was back to square one.

I woke up this morning and called my mom. I had sent her the radiation horror stories and the e-mail from Julie's friend late last night, and I wanted her opinion. "Truthfully, I don't know what you should do," she sighed. "I'm 51% leaning towards telling you not to do it, and 49% thinking you should. I'm also selfish, and I want to keep you around. But I also want you to be happy. If you have one of these awful side effects, will you be able to deal with it and live your life? Or will you curl up in a ball and be miserable?" I couldn't answer her. Why can't this be easy?

I headed out the door to meet my friend, Carrie, and her sister, Jennifer for lunch. I remembered that Lisa from Dr. Leitao's office had mentioned that she was going to have a woman who had gone through a hysterectomy and chemo and radiation contact me to tell me her experience. I hadn't heard from her yet, and I really wanted to speak to her. I also wanted to ask Lisa her opinion on my situation one more time to see if she'd give me the answer I was looking for. So I called Sloan-Kettering and left a message for Lisa to call me back.

Lunch with Carrie and Jennifer was a lot of fun, and took my mind off cancer for a little while. But then, because I really wanted their input, I started the radiation debate. "What would you do if you were me?" I asked them. After explaining everything I had read, both sisters agreed that they wouldn't risk doing the treatment. Maybe I swayed them with my negative attitude, or maybe they really felt strongly about the decision, but either way, they said, "Don't do it!"and I concurred.

Lunch was interrupted by a phone call from Lisa. I stepped outside so I could hear better, "Hi Lisa. I'm still really struggling over this decision. I don't know what to do." I expressed all of my concerns again. "Those are all very real possibilities," she agreed. "It's a hard decision and you need to do what you think is best. But not everyone has a bad experience. I finally got in touch with our patient, Jen, and she said you can call her to talk about her how she's doing after radiation." I asked Lisa to e-mail me Jen's number. Then I said, "A lot of the women online were talking about using radiation to shrink tumors. I don't have a tumor. Everything is gone. What's left to radiate?" Lisa paused for a minute to collect her thoughts, "You had that one lymph node with disease in it. That means there might be more." I was in fight mode, "But isn't that what the chemo is for?" Lisa was calm and understanding, "Yes. Chemo is supposed to stop the spread. The radiation is more like a clean-up of the area where there were cancer cells. It will take care of anything that might be left over that we can't see." I thought about that for a minute, then asked, "If it ends up coming back, I don't have a cervix anymore. Where does it go?" Without a thought, Lisa explained, "Small cell will usually go to the lung." My whole body shuttered. "How is that treated?" Lisa explained, "Sometimes with more chemo, sometimes with surgery. It depends." Ugh! The last thing I want is to go through any of this again.

I thanked Lisa and ended the call. My brain was spinning with more thoughts than it could process. Ok, she said they're going to do scans every three months for about five years. If it comes back, they'll catch it and treat it immediately. But what if it comes back, and by the time it's big enough to see on the scan, it's too late? What if it invades both lungs? What if it gets to my other organs? I don't want to die! Still, no one is guaranteeing that radiation will stop it. Lisa also reconfirmed that chemo is really the most important part. She said I'm not being stupid to question the radiation, but she also said they just want to do everything they can to make me healthy again.

I walked back into the restaurant and told Carrie and Jennifer about the phone call. "I still don't think I'm gonna do the radiation," I said. But that nagging feeling was still there.

I called my mom as I was driving home so I could rehash my thoughts for the millionth time. Back and forth and back and forth we went. "Look," I said, "if I were playing Blackjack and I had a 16 and the dealer was showing a 10, I'd take a hit. If you're gambling, you need to take chances and not always play it safe. Staying on a 16 is like doing everything the doctor suggests. It's safe. It may not be the best answer, but at least you won't lose right away. Hitting a 16 is risky. It's like taking a chance and not going the safe route. There are a lot of cards that can put you over the top and you might lose your hand. But if you win, it feels that much better. I've never been the type to follow the crowd. I've always played by my own rules. I like being different. Why can't I be the person to think outside the box? Why can't I be the test case who doesn't do what everyone says I should do?" My mom listened to my analogy, then added her thoughts, "I can't tell you what to do. I don't know what the right answer is. I know you want me to say do it or don't do it so you feel better about your decision. I know if you don't do it and the cancer comes back, you'll blame yourself. So, I'll take the blame. Don't do it. If something happens, blame me." No, no, no. "I'm not blaming you, Mom. This is MY decision. I'll be the one to live with the consequences."

I got home at about 2:45. I had a little under an hour before I needed to pick the boys up from camp, so I figured I'd give Jen, the patient Lisa referred me to, a quick call. I wasn't prepared for the conversation that would take place over the next 50 minutes.

Jen is a cervical cancer survivor. She didn't have small cell, but she did have a hysterectomy, chemo and radiation. She's just a few years older than I am, but was 37 at the time of her diagnosis. A year and a half after finishing treatments, this woman is full of so much life and positive energy, I was literally able to feel her strength through the phone. "Hi!" she chirped cheerily. "Ok, tell me what questions you have and what you're worried about with the radiation." I blurted out all of my fears about the horror stories I had read online. "Ok, wait," Jen said with authority. "I read all of that stuff too, but you have to assume that these people were doing radiation in like Ethiopia or something. The doctors at Sloan are so precise with every mark and the make sure to like you up in exactly the same spot each time. If they zap you in the wrong place, they'll know it and they'll adjust it. That stuff only happens to like 2% of the population, and it comes from being zapped over and over again in the wrong spot. And as far as thinking your vagina is going to fuse together, I could write a book called 'My Life in Stirrups.' They're gonna check you every week. They'll look in your hooha, and if they see ANYTHING unusual, they'll adjust the rays. I'm not saying things won't be different, and you'll go through a few months of complete Hell. But it gets better."

Wow. A real radiation advocate is on the phone.

"So, you don't have any long-term side effects?" She thought for a minute. "Yeah, I have to pee a lot more than before because my bladder shrunk a bit. And sometimes if I sneeze, I pee a little. But from what my friends tell me, that happens after you pop out a few kids anyway!" I couldn't help but giggle. She was so upbeat and the positive vibes were intense. "What about sex?" I asked without really wanting to hear the answer. "Oh, that scared the crap out of me too!" Jen admitted. "Who would want to go without sex for the rest of their lives? But don't worry. They give you the tools to make it better. It'll never be the same, but if you do what they say, you'll be fine." I mentioned the dilator. "Yeah," she laughed. "It's the cheapest piece of crap they could give you! When I saw it, they had to tell me to stop laughing long enough for them to explain what to do with it. I even asked them why it didn't come with batteries! Honestly, have your best friend buy you a nice sex toy. Anything will work. Use the moisturizers, too. All of that will help to keep the tissues pliable. And the more you have sex, the better!" I still wasn't convinced. "I just rescheduled our honeymoon for our one year anniversary," I explained. "I'd really hate to get to Bora Bora and have to tell him we won't be able to do any celebrating." Jen dismissed that thought in a hurry, "Forget it! In a year you'll be great! You'll be ready to go three months after treatments. It might take a little while to get used to it, but if you do what they tell you to do, it'll be ok. Oh! One long-term side effect I have is that now I need to use lube. But, so what? I spend $7 every two months and I'm good to go!" I really liked her.

I wanted to keep talking, but my eye was on the clock and I really needed to run so I would make it on time to pick the kids up from camp. I thanked Jen, we agreed to keep in touch, and I was out the door.

I hadn't seen my boys in a few days since they had been with their dad. Our arrangement is every other weekend and two days during the week. It's a lot of bouncing back and forth, but it give us each equal time with the kids, and they seem to be doing well with it. As I walked through the parking lot, I realized that this would be my last week to have my little boys sleep at my house. I'll be going to radiation every day, and chemo three days a week, every three weeks. I'll see them as much as I can when I'm feeling well, but it's not fair to them if they need to stay inside all summer because Mommy can't be in the sun, or Mommy is too tired to play, or Mommy is too sick. And if one of them wakes up sick in the middle of the night, I really can't be exposed to the germs. Jimmi hasn't ever dealt with sick kids, so I can't put him in that position. He'd be scared to death. So, I made the decision to let them sleep at their dad's house until my treatments are finished.

"Hi Mommy!" Justin said when he noticed me standing in the doorway. "Oh, hi Mom!" Dylan echoed. I smiled at the little one who shared my hazel eyes and freckles. "Let's go! We need to eat before music lessons!" I announced. They followed me to the car and Justin agreed to let Dylan choose what to have for dinner. Not surprised by his suggestion, I headed to Burger King to load them up with crap that I would normally never eat. But, hey, what the Hell? I'm starting chemo next week. I'm pretty sure that gives me carte blanche to do whatever I want right now. I let the kids place their orders and when the woman behind the counter asked, "Anything else?" I scanned the menu and added, "Yes, small onion rings, please." It wasn't like I was getting a giant Whopper meal, but it's more than I usually allow myself to eat at a fast food joint!

 I set the tray on the table and spread out napkins in front of each of my boys. I placed their fries and onion rings on top of the napkins so the food wouldn't come in contact with the dirty table. I walked over to the soda fountain and filled up two cups with Sprite, and one with Diet Coke, then headed back to the table. Everyone was eating silently. Dylan was playing his Nintendo DS as Justin looked over his shoulder. I stared at the little images of me sitting across the table, and then it hit me like a lightning bolt.

I need to do the radiation.

I wasn't even thinking about it, but the decision became crystal clear. I can't let these beautiful boys grow up without a mom. Screw the side effects! I need to do everything I can to make sure I live to see them grow up. I want to see them graduate from high school, and college, and get married and have babies. I want to be a grandmother! My eyes started to tear up at the thoughts. Just then, I looked down and saw the blinking light on my phone. I had an e-mail from my mom. It said...

"Go with the radiation."

Wow. If I had been looking for a sign, here it was. At the same exact moment, in two different locations, without even speaking about it, my mom and I had come to the same conclusion about the dilemma that had been haunting us for days. That's it. That's the decision. I need to live. I need to be around for my boys.

My mind is made up.

No turning back now.


  1. That is the only thing that repeatedly went through my mind as I've been witnessing your thoughts over the toughest decision of your life. And there's your answer, it's your life. Attempting to put myself in your shoes (not that any of us really can), I would do whatever I had to do... to be there for Hayden. Your decision is tougher, and smarter than that rare cancer of yours. I wish you the smoothest recovery possible.

  2. Wow! What difficult decisions you have been faced with this past couple of months. And an amazing turn of events with you and your mom deciding YES to radiation at the same time! Whatever decision you choose for yourself, it is the right one for you and your family.

  3. I agree with you 100%. I would do the radiation if I were you, anything to fight as hard as I could in order to be around for my children. Dylan and Justin won't care if you have unfortunate side effects, or look less than your best at your wedding (though I'm confident that you are going to look beautiful and feel amazing that day), as long as you are alive for years and years to come. And they'll love and admire you for being a warrior and doing everything you can to continue to be in their lives until you or they are old and grey. :)

    My Mother died of breast cancer the week after my 23rd birthday, when her youngest child, my sister, was 15. She and I and my brothers miss her everyday. But I'm comforted by the fact that she fought like Hell, for years, until the very end, despite terrible pain and side effects, with a cheerful attitude, because she wanted to be with her children.

    This will not happen to you however. My Mother was diagnosed with breast cancer in 1984 and died in 1998. That was a long time ago and medicine has advanced greatly. I'm living proof. I was diagnosed with breast cancer in 2009 and after a lumpectomy, 8 rounds of chemo, a bilateral mastectomy, and reconstruction, my test results show NO EVIDENCE OF DISEASE (which is even better than remission). So many medical advances have been made, and we are being treated at Sloan-Kettering, the foremost cancer hospital in the world. We are going to be fine and live long, healthy lives.

    I'm so proud of you for making the difficult decision and "fighting like a girl," definitely the stronger sex in my opinion. :)

    It might not be easy, but it will be worth it. I know you'll feel that way as you watch your boys grow and spend your life with the man you love.

    Plus, like I've said before, Drs. and people on the Internet always give the worst case scenario. You might just sail through all of this. I feel like I did. I truly hope the same for you.

    So well done strong woman! Rest in your decision, enjoy the peace of no longer agonizing, and bulldoze through all this sh*t. :) When I was worried about something my Mother used to say, "Soon it will be over and you'll be looking back on it. Focus on that." After a two year cancer journey, that's where I am and let me tell you, it feels damn good. You will get there too.

    Let me know if there's anything I can do for you.

    Take care,
    Mary Vetting

  4. mazel tov, honey. now go kick some ass. xoxo

  5. YOU are going to be great!!! This is truly the best decision...not because it's the right thing to do, but because you played out all the options and are the one holding the power....the power of knowledge and the power of your strength. And, you know you aren't alone. You're only a phone call away from talking about lube choices :-)