Monday, June 27, 2011

When Will I Catch a Break?

I canceled my radiation simulation appointment today.

Why? I actually have some good reasons. The first one is that I've been in a ton of pain all weekend and the thought of lying flat on my back for an hour while they mold my body and mark the ray points didn't sound like any fun; especially since the frequent and urgent need to go to the bathroom - both ways - might spring itself upon me at any moment. The other reason is that I was still hoping my appointment with Dr. Leitao this Friday would reveal no cancer in my lymph nodes, and then my tearful begging and pleading would soften his heart enough that he'd allow me to wait to start treatments until after my wedding. But, really, the main reason I canceled was because I just didn't want to go.

I called Sloan-Kettering at 8:30 this morning to reschedule my 10:15 am appointment. A very audibly flamboyant tech named Mark or Matt (I can't remember which) said, "Hmmmm...well, we may not be able to reschedule you very soon." Fine with me, I thought to myself. "I'd actually like to try and come in on July 5th, if I can. Does that give them enough time to get everything ready by my start date on the 18th? I just want to make sure I have time for all the pain to go away this week." Translation: I want to wait until after my appointment with Dr. Leitao on Friday because I'm gonna force him to let me wait until September. "Let me speak to Dr. Sidebotham and I'll call you back."

I hate this. Too many doctors. Too many nurses. Too many techs. Mark/Matt called back pretty quickly, "Suzanne? I spoke to Dr. Sidebotham and she said to come in on July 5th at 10:30." Wow! She didn't put up a fight? "Perfect! Thanks!"

Five minutes later...

Ring! "Hello?"

"Hi Suzanne, it's Eileen in Dr. Sidebotham's office." Oh CRAP! Not her again! Is this gonna be another July 11th/July 18th argument?

"I heard you canceled your sim this morning. What's going on? Are you feeling ok?"

I'm not going to let her guilt me into coming in now. I'm holding strong. "Not really. I was in a lot of pain all weekend."

"Where was the pain?"

"My abdomen, mostly. A lot of sharp, shooting pains. I could barely stand upright a lot of the time."

"Did you have a fever?"

"Slightly. It was about 100.2 on Saturday night, but the paperwork said not to call unless it was 100.4 or above."

"Ok, I really think you should call Dr. Leitao's office and let them know what's going on. Feel better."

Wow. She actually seemed to care about how I was feeling this time. Cool.

I took her advice and called Dr. Leitao's office. I explained the symptoms to the receptionist so she could e-mail the doctor, but this time I included the painful urination part. Melissa, the covering nurse called me right back.

"Hi Suzanne. I hear you're not doing too well. I'm going to call in a prescription to your pharmacy, but can you stop by the first floor a few minutes before your appointment with Dr. Gorsky so I can do a urine test?

I canceled the radiation simulation, but I still had an appointment with Dr. Gorsky, the medical oncologist (chemo doctor) at 11 for a post-surgical follow-up. "Yes, I definitely will. You think I have a bladder infection?"

"Dr. Leitao seems to think so. Don't worry. We'll clear it up for you."

I woke Jimmi and let him know we needed to get moving quickly. I texted my ex-husband and asked him to pick up the boys 15 minutes earlier, took the fastest shower I could, dragged the kids out of bed, grabbed a Special K bar and we were out the door.

I think it was the first time we ever made it to an appointment at Sloan with time to spare. Melissa called me in pretty quickly, and I allowed Jimmi to stay in the waiting room because all I needed to do was pee. I figured I could handle that job myself.

Melissa checked my incisions, asked me a few questions, had me give her a sample and said, "We'll have the results back in a day or two, but start the antibiotics right away." "Is there any chance it could be something else?" I asked. "Not really. It's very common after having a catheter. But the antibiotics will take care of it very quickly." "Yeah," I laughed, "and they'll probably give me a yeast infection too."  Melissa didn't deny that, but suggested I take acidophilus along with the antibiotics to try and prevent any other issues.

When I got back to the waiting room, my mom was sitting there with Jimmi. I love my doctor appointment posse. I'm pretty sure we're famous at Sloan-Kettering because they never see one of us without the other two.

Up to the third floor we went for my appointment with Dr. Gorsky. I looked my mom in the eye and said, "The goal here is just to make sure she's ok with waiting an extra week to start my third cycle of chemo. She said she would last time. If she doesn't, it'll fall on August 29th. I can't do that or I'll be sick at the wedding. I'm not asking her to wait until September because I need the results from Dr. Leitao first. I just need to make sure that if I absolutely have to start on the 18th, I know she'll move the third cycle date."

As I walked, I thought. I know it's not in my lymph nodes. I know they probably won't find much left in the cervix either since nothing showed up on any of my scans. Nothing was visible to the eye during the surgery. They just have to let me wait. They have to. It's not fair that this is happening right now. They'll understand. If it's not in my nodes, I'm not gonna die, right? I want to do this MY way! Positive thinking! I know I'm fine!

I checked in on the third floor and filled out the sheet I'll need to complete each time I go for a chemo treatment. A double-sided page of questions about pain and discharge and hearing loss and fatigue and nausea - check yes or no. Last time I answered "no" to each one as I quickly moved down the list. This time, about 10 "yes" checks were added.

Nikki, the super-sweet nurse I saw last time called me in to check my vitals and take blood. "Why is she checking my blood?" I asked. "Dr. Gorsky just wants your base levels." "Ok. Is she checking my potassium? I think it was low last week." Nikki smiled and said she was. "You haven't started treatments yet, have you? I haven't seen you in a while. The only reason I remember is because I saw your man with all the tattoos! I know I haven't seen him around here." I giggled. "No, not until the 18th."

When Nikki was done with me, she sent me down the hall to a smaller waiting room. Jimmi and my mom were there, as well as an older woman with what seemed to be a private nurse or aid. As they called the woman's name, she started looking through a basket of snacks provided for the patients. "I can't find the cookies I like." She said to her nurse. The nurse eyed the basket next to me and said, "Can you please hand me three of the yellow bags of cookies? She likes those the best." I did what she had asked, and as they were leaving the room, the woman turned to me and said, "These are the best because they're nice and light. I'm going for chemo now and that's the only thing I can eat." I nodded as she exited to room, then looked at my mom as an eruption of tears snuck up on me without warning. "I don't wanna do it!" I sobbed like a five year-old. She got up and wrapped her arms around me as Jimmi shot us a look of surprise. "What happened?" he asked, completely confused. "My mom explained, "That woman went for a chemo treatment. It made Suzanne upset because she doesn't want to have to do this."  Jimmi rubbed my leg and offered his stock response to my fears, "It's gonna make you better!"

"Suzanne?" We all got up and followed a very strange-looking nurse into an exam room. She kind of reminded me of Lily Tomlin when she played the operator character. Wow, I'm really old. Anyway, she had those pointy-rimmed glasses and dark hair. She also had about 50 different pins all over her lab coat. The nurse asked how I was feeling, what medications I was taking and when I was starting treatment, then she left.

My mom, Jimmi and I waited in the room for Dr. Gorsky. We were all pretty relaxed since the only thing we were going to talk about was the plan for my chemo, whenever it was to start.

Or so I thought.

Dr. Gorsky entered and looked at me with caring eyes. She started to speak in her thick, Russian accent, "How are you feeling?" I explained my ailments for the hundredth time today. "Ok, well, I hear you're going to delay treatment a week?" "Yes, from the 11th to the 18th. My bridal shower is the 17th and I really don't want to be sick." I'm not getting into the begging with her. Still saving that for Dr. Leitao on Friday. "Ok, I guess that will be fine, but I don't want you to delay it any longer. I know you haven't spoken to Dr. Leitao about your pathology, but it was much worse that we expected."

I'm not sure, but I can only assume that my mom and Jimmi's faces dropped just like mine.

"They found more disease than they expected in the cervix. It is definitely Small Cell Neuroendocrine Carcinoma. It also started penetrating the lymphatic system and there were spots all around the area. There was a larger, unexpected tumor growing up the left side of your cervix, and some disease extended outside. He took a bunch of lymph nodes, and there was cancer in one of them."


It's in my lymph nodes?

I know she said it was only in one of them. But that just means it was only in one of the ones they took out. If it's in one of those, it can be in others anywhere else in my body. The glimmer of hope I had of waiting to start this brutal regimen is gone. Squashed with two words. Lymph nodes.

I didn't cry.

Dr. Gorsky looked at me sympathetically after delivering the blow. "Are you ok? Should we talk about the treatment now and refresh your memory about our last talk?" I nodded. "Ok, you'll start your chemo the same day as you start radiation. I will see you that day. The first day will be a long one because we need to give you a lot of fluids with the medicine to make sure you don't get sick. It will be about five hours. Days two and three are short days. Less than three hours."

"How will you do it? Do I need a port that you'll leave in or will it be an IV?"

"It will be an IV." Ok, that's good news, I guess.

I mustered up some strength to say, "Before we continue, can I please ask you a question? The last time we spoke, you mentioned waiting an extra week to start my third chemo cycle until after my wedding. If I start on the 18th, that brings the third one to the Monday before my wedding, and I can't do that. I just can't."

Her eyes were sad for me, but her face looked serious. Like she wouldn't budge. My own eyes pleaded with her without saying a word. "Ok. I will work with you if that's what you want. I need to do what's best for you healthwise, but I'll move it. Since the radiation will be finished after the second chemo cycle, we'll be working independently by the third, so I don't have to check with anyone else. You'll probably need the extra week off at the end of the radiation cycle anyway."

Well, that last sentence wasn't very comforting, but she agreed to move the treatment and I have witnesses!

"Ok, to continue, I'll be prescribing you four different anti-nausea medications which you should fill now and bring with you to your treatments. Two will be to take no matter how you feel, and the other two will be as needed. We really do control the nausea well. I'll also prescribe an anti-anxiety medication for you because a lot of people get very nervous on treatment days."

Gee, I wonder why? It all sounds so lovely!

"I've told you the side effects. Nausea, vomiting, diarrhea, constipation, hearing loss, bone marrow loss, anemia and kidney failure. Oh, and of course, the hair."

Still not crying. I keep thinking of that saying, "If the cancer doesn't kill me, the chemo will."

"Drink five to six liters of fluids on chemo days. That will help with the symptoms." Yes, because downing large amounts of liquids will be so easy when I'm nauseous and sick. "Do you have any questions?"

Oh, so many. But I couldn't think of them so I just shook my head. Ok, I thought, you can leave now. I want to go home. My stomach is aching again and I'm having shooting pains in my bowels. Please go.

"Ok, I'll see you when you start, but I urge you again to not delay your treatment any further. Sheena will be in soon to give you a teaching on the medications I'm prescribing for you. Don't worry. We'll take care of you." And with a smile, she was gone.

I finally allowed the tears to escape. But only a few. My mom jumped up to hug me and I saw the redness in her eyes. Her floodgates were much stronger than mine and they didn't let anything flow down her cheeks. Jimmi reached over and rubbed my leg again. I can't believe that I've never seen him cry. I just don't get it.

I pulled it together just as Sheena, a pretty nurse with a diamond nose ring, entered the room. She had a cheery smile and a sweet, upbeat voice. "Hi, I'm Sheena. Have you ever had chemo before?" I shook my head. "Ok, well, I'm gonna go over the side effects and medications Dr. Gorsky prescribed."

Sheena explained when I should take each of the pills that were prescribed. Then she went over the side effect of the chemo, once again. "The paperwork we're giving you gets into the nitty gritty of every possible side effect you might have. I'm just gonna tell you the ones that are most common." I know she said nausea, but my mind went blank on the rest. There were only a few of them. Right, my blood pressure might drop, but usually it comes right back up. Usually. Ok. Then there was the bone marrow thing. "How will I know if that happens?" "Don't worry. We don't expect you to know your counts. We'll check your levels each time you come in, but if you feel different at any time, call us and we'll tell you what to do. We keep a very close eye on you."

Ok. Wait. She didn't mention the hair loss. "When will my hair start to fall out?" I croaked. "Usually after the second treatment, but with the chemo you're going to have, it might get thinner but it won't fall out."

What? Wait, what?

"It won't fall out? Dr. Gorsky told me to cut it short and gave me a prescription for a wig!" Sheena looked confused. "I don't know why she said that. Maybe she's giving you all the possibilities, but I do the treatments on patients every day, and with these medications it usually just thins out a bit. Maybe there's a slight chance that it will fall out, but probably not."

For the second time that day, I'm sure my mom and Jimmi's faces shared my expression. But then I laughed with sarcasm and said, "Well, you know how my body works with things that rarely happen."

"So, if I keep my hair, will I be able to color it before my wedding? I've been letting it go for a few months because I figured there was no point in spending the money."

"Usually they don't let you because of the chemicals, but let me ask Dr. Gorsky." "Wait!" I called out, "Can you ask her about Botox too?" Hey, can't hurt to ask! She left the room quickly and returned with the same smile as before. "Dr. Gorsky said she usually doesn't allow hair coloring, but she'll make an exception for you. But absolutely not to the Botox."

Ok, I can deal with that. Two points for Dr. Gorsky! You go, girl! "Maybe I'll just dye it all back to my natural color right now. The roots have grown in so much, I can actually see what color that is! If I just go completely dark and skip the highlights, as it grows, it'll all be the same color...with a few grays, of course."

When Sheena was done, I felt a tinge of hope creep back into my heart. It would really be great to keep my hair. I know I'm being vain again, but wouldn't it be awesome? Ugh! I hate having hope! Now I'll be even more disappointed if it really does fall out. Shit! Think positive, Suzanne!

We left the exam room and moved on to the checkout desk to set up my next appointment. The receptionist said, "Ok, someone will call you with a time to come in on the 19th for your first treatment." Oh, here we go again! "The 18th." I said sharply. "The 18th is just your set-up with radiation. The 19th is your actual start date." "Oh. Ok. I didn't know that."

I kept the tears to a minimum because I knew the roller coaster was on it's track and there was no way to stop it anymore. My mom, Jimmi and I went to lunch. The shooting pains started ripping through my body as I ate, and each time, my face would scrunch up and I'd start my Lamaze breathing. "Why don't you two go home. Pick up the antibiotic for the bladder infection so you can start feeling better," my mom suggested. We followed instructions and headed for the car.

As we drove, my lower back and abdomen were taking turns wreaking havoc on my body. "Oh my God, it hurts!" Jimmi made a pouty face and rubbed my leg. We got to ShopRite and he pulled up outside, left me in the car, and ran in to get my magic-fix pills. As I sat there, I felt something warm between my legs. What the Hell is...? Holy shit. I just lost control of my bladder and I didn't even notice. It wasn't a lot. A few drips, really, but it was enough to freak me out. I read that having a hysterectomy can cause incontinence. Oh, please don't let that happen! I can't wear a diaper with my wedding dress! I can't! Five minutes later, Jimmi was back and we were on our way home.

"I just peed in my pants." I said nonchalantly. The expression Jimmi's face matched how I felt. "A lot?" he asked carefully. "No. But enough to scare me." He thought for a minute, "Maybe it's from the bladder infection. Don't worry, Pumpkin. Wait a few days and see what happens." I accepted that.

I was barely in the house when I tore open the bag, pressed down the childproof cap, and popped one of the giant, white pills into my mouth. I chased it down with cranberry juice, had a painful experience in the bathroom, and went to lie down on the couch.

As I watched "Good Will Hunting", I felt the same warm sensation as before. Shit! Again? This is NOT cool. I went upstairs and stuck a panty-liner in my underwear to catch whatever leaks decided to slip out. "I never thought I'd need to use these again," I said to myself as I discarded the wrapper from the liner and stumbled back to the couch.

The pain was unbearable, and since my pill-pusher was at the gym, I chose not to do anything about it. I called my mom. Acting on Jimmi's behalf, she demanded, "Take a Vicodin. You heard the doctor today. It doesn't help you to be in pain." Yeah, I guess she did say that somewhere in the midst of the jumble of other information I didn't want to hear. "Ok, fine." Thirty minutes later, the pain had eased to mild cramping and I was stoned and loopy.

And here I sit at 1:30 in the morning. I have two doses of antibiotics in me and I've been leak-free since this afternoon. Keeping my fingers crossed on that one! The pain has significantly subsided to the point where I don't think I'll be crying myself to sleep tonight. Well, at least I won't be crying because it hurts.

For the last week or so, I'd been preparing myself for a fight this Friday. A fight to take control of my body and do things on my terms, according to my schedule. The gloves came off quickly this afternoon as Dr. Gorsky ripped the hope of having a choice out of my hands. Now, the only thing I have left to fight for is my life.

And I'm ready.

Bring it on.

Saturday, June 25, 2011

Instant Menopause

Hot flashes suck.

Anyone who tells you they're not so bad is just full of shit. Maybe it's because I didn't get to gradually ease into menopause, and maybe it's because my body is a mess from the surgery. All I know is I'm miserable and there's nothing I can do about it. Yes, I've been on an estrogen replacement pill since they took my ovaries. It was supposed to immediately take over where my own hormones left off, but, yeah, not so much.

I've literally aged 15 years overnight.

Last night was another sleepless one. I kept tossing and turning, trying to find a position that wouldn't aggravate the pain in my abdomen. I'd finally find one, then wake up five minutes later dripping with sweat. My pajamas were soaked and changing them would have been pointless since another hot flash was bound to follow soon after.

Ok, at least the crazy shoulder pains I had the first post-surgery week are gone. I'm able to move around better and I can get by with Tylenol or Advil instead of Vicodin. But there was a small complication. All last week I was having terrible leg cramps. They were mostly in my thighs and hips, but they hurt so badly, I couldn't really walk. To make matters worse, a few hours after I would wake up each day, my heart would start racing and beating out of control. I assumed it was from the anti-inflammatory medication I was taking, since both of those symptoms were listed as side effects. But when I stopped taking them and the ailments didn't go away, I called Dr. Leitao's nurse at Sloan-Kettering.

"Hmmm...Sounds like low potassium to me," she said. "Eat some bananas and see what happens."

That would be too easy, right? But, magically, after two bananas yesterday, the leg pains subsided and my heartbeat went back to normal. One problem was instantly fixed, but the cure caused another. Does anyone know what the downside of too many bananas can be? Yup, you got it.


If you've ever had surgery, you know how painful it can be to go number two. It's not pleasant or fun in any way. Usually, the doctors put you on a stool softener to ease things up a bit, which has been working pretty well. Until now.

Today has been agony for my bowels. Sharp, shooting aches coursed through my body this morning, and I raced to the bathroom only to sit there and wait. Can't push because it hurts. I actually texted Jimmi from the toilet to tell him I thought I was gonna die. As everything moved down to the exit, I sat there with my head in my hands, literally crying in pain. When it was all over, I was disappointed in the pitiful amount I had produced, and left the bathroom defeated. I got another chance to relive my Hell about an hour later. Same exact situation with even less of a result.

And while we're on the subject of bodily waste removal...what is up with my bladder?? I know they moved it around during the surgery and it needs to readjust, but must I pee every 30 minutes? And it's not even a building sensation. It's like here I am minding my own business and, Oh! I have to pee RIGHT NOW! And then I go and I can't get it all out in one shot. It starts to hurt as it empties so I need to stop and start and stop and start. And when I'm done, I'm not even convinced it's all out. Maybe that's why I'm going so often. No, I don't think it's a bladder infection. I've had those before and this is different. I really hope this isn't a permanent condition and I'll be back to normal when the swelling finally goes away.

But oh my God, my bathroom experiences are brutal!

Maybe a shower will help. As I let the water run, I started to undress. I lifted my shirt and a green cloud of pure evil wafted up to my nose. "Oh my God, I stink!" I said to myself in shock. I bent my head down to give my sweaty pits a closer whiff. "I smell like a 13 year-old boy!" Oh, how gross! But I never smell! I can do five miles on the elliptical and work up a sweat that drenches every ounce of my body, and I still don't smell! What the HELL is wrong with me?

Hormones. That's what.

I want my ovaries back. Pretty please? You can keep my uterus, but can you give me back the little hormone producers? These synthetic ones just aren't cutting it. Wait, on second thought, can I have my uterus back too? You see, I did some research on the cost of hiring a gestational carrier, and I almost fell off my chair. I had no idea it was that much. If I double my original assumption, I'm still on the lower end of the spectrum of what the average price-range might be. I'm gonna have to sell my body to pay for my own baby to be born. It's ok, I don't have to worry about getting knocked up, but it might be a difficult career choice once my vaginal canal shrinks up from the radiation. I guess Jimmi will have to do it! He can stand on the corner with a mattress strapped to his back and a sign in his hand that reads "Curbside Service". I shouldn't think about that part now, should I? As Jimmi says, "Get healthy first and worry about that part later." Sometimes he make sense. Sometimes.

At least I can say one good thing about the last few weeks. Or maybe it's a bad thing. When you go through an experience like this, you really find out who your true friends are. You see who can spare five minutes to pick up the phone or drop by or send a card. But you also see who is too wrapped up in their own life to bother. Luckily, for the most part, people have surprised me in the last few weeks. I've had amazing meals cooked and brought over by caring family and friends. I've gotten flowers from loved-ones, and even a beautiful basket from our wedding photographer! I've had a stream of visitors from the moment I entered the hospital, and almost every day since then. The constant support from those who are closest to me is unbelievable. Cancer truly sucks and no one should ever have to go through this pain. But it's made me realize something very important.

I've learned the meaning of real love.

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

Monday, June 20, 2011

Why Can't I Decide What I Want?

I'm so swollen.

I'm swollen in places I didn't think had anything to do with having a hysterectomy.

And the numbness sucks!

Seriously, why is my right thigh numb? Anyone? And why is my right hip four times the size of my left hip? Ok, I get it. I had major surgery less than a week ago and it'll take time to heal. But this is nuts! I'm a prisoner of huge T-shirts and loose-fitting sweats. Unfortunately, my closet has a very small supply of both items. Luckily, I thought ahead and bought a few pairs of sweats pre-surgery, but I wasn't prepared for the T-shirt issue. Each day, I throw on one of my shirts, look in the mirror at the way it hugs the disproportionate lumps all over my abdomen, sigh in frustration, and ask Jimmi if I can borrow another one of his shirts.

I look like a bruised potato.

No lie. I have five incisions in different locations all over my belly. The main one, where I think they pulled out my innards, is about an inch above my belly button. That one is probably an inch long. Then there are two others, each about a half-inch long, and each about three inches away from the main one, one to the right of it and one to the left. About four inches to the right of the cut on the right is another half-inch cut. That one is basically on my side, about four inches above my right hip. Then, move back over to the left, and you'll see one more half-inch slice about three inches below the one that's immediately to the left of the main cut. I'm pretty sure the surgeon placed that one where it is, and not directly opposite the one on my right side, to avoid the beautiful butterfly-topped cherry blossom tattoo that travels down my ribcage to my hip.


There are five bright red lines scattered all around my mid-section. I was told that five is actually better than one. I'd only have one large line if there were complications with the robotically-assisted surgery and they needed to cut me open and really dive in. But there weren't any complications. I'm not totally clear on exactly why they needed five holes, but I know there's one for the removal of parts, one or two for the robot and one or two to blow my abdomen up with gas to make it easier to see inside of me. I assume the last site of entry was used for the camera they needed to see what they were doing in there.

So, here I am. Almost a week after surgery, and still feeling pretty crappy. The pain has gotten better, thank God. But I feel like I've been hit by a train. After five days of unbearable stabbing in my shoulders, of all places, I'm pretty sure that's subsided. Now I feel like I'm nine months pregnant. My stomach rests on my thighs when I sit down. My right hip isn't only a muffin top, it's a whole friggin' layer cake. And the weirdest area of swelling of all is, brace yourselves, my right outer labia. Yes. The right outer lip of the only womanly part I have left is so engorged, it looks like I have a testicle.

Oh, so sexy!

It was traumatic when I finally got into the shower a few days ago and started to wash that area. "What the HELL is THAT?! Jimmi!! Look at this!!" The poor guy came running into the bathroom thinking there was really something wrong. "What? Are you ok? What's wrong?" I pointed between my legs. "What IS this???" I cried. He just looked at it with a completely concerned face. Then I could see the corners of his mouth quivering. He tried so hard to keep his composure, but it was a losing battle. "Hahaha! I'm sorry, Pumpkin. I'm sure it'll go back to normal. Give it time!"

Grrrrrr. Thanks a lot.

That description of my bodily distortion is what led me to call the radiation oncologist's office today. They had called me last week to schedule my radiation simulation for tomorrow morning. From what I remembered the last time we spoke, Dr. Sidebotham said the simulation entails making a mold of my body to ensure I'm in the same position each time I go for a radiation treatment. They will also insert a dye-soaked tampon into my vagina to make sure they see the canal on the x-ray so they know exactly where it ends. Then they'd mark each area to radiate with a small, blue tattoo. After one look at my body this morning, I laughed and said, "Yeah, not happening."

This is not MY body. If she wants me to be in the same position each time, we're gonna need to wait until Mrs. Potato Head leaves the building. Not to mention the fact that I'm pretty sure a tampon wouldn't even fit where it needs to go with my girl-balls blocking the way.

I called to reschedule and the receptionist said the nurse would get back to me. In the meantime, I thought about something my mom and I had discussed yesterday.

Why can't I just wait to have the treatments until after my wedding? Would it really make a difference?

We rehashed the questions again. When Dr. Leitao told me what the plan would be for my surgery, no one was in a hurry. It was fine to wait a month and a half to remove the cancer. It's a "slow-moving cancer", he had said. Even after he found out it was Small Cell, a more aggressive cancer, it didn't become an emergency. No one thought there was a need to move up the surgery. It was still ok to wait and harvest my eggs and do extra testing and chill out until June 14th. No problem.

All the doctors decided that starting treatments a about a month after surgery would be ideal. One of the cells might have gotten out and now it's hiding somewhere. "We need to do radiation and chemotherapy as a precaution, just in case," they would say. Ok, I understand.

But here's my problem.

I had been going for regular pap smears every six months because they found abnormal cells about two years ago. The second the results changed from mild to high-grade, a LEEP was performed immediately to remove the questionable cells. That's when the cancer was found. According to what the doctors can tell, it was caught very early. Since the discovery, I've had every test known to man: MRI, CT Scan, PET Scan, etc. Nothing was found. They couldn't even see anything on my cervix in the later tests - and actually said it may have all been removed in the LEEP in April - but they really needed rip out my reproductive system just to be sure. After my surgery last week, Dr. Leitao said that there was nothing visible anywhere in the parts he removed, and that was a good sign. We still need to wait for the pathology report, after they chop up my lost organs into tiny pieces and test them thoroughly, to know for sure, but it's a good start.

All that being said, I ask the question again. Why can't I wait to start radiation and chemotherapy until after my wedding? At this point, if I start when they want me to, it won't be until mid-July anyway. Will six more weeks make that much of a difference if the pathology is clean? Obviously if the report shows spreading, I'd nix the entire idea and do whatever they want.

But what if it shows nothing?

My phone rang this afternoon. "Hello?"

"Hi Suzanne, I'm calling from Dr. Sidebotham's office. You have a question about rescheduling your simulation?"

"Yes, I'm really swollen. I don't think you'd get an accurate mold at this point. I was wondering when they called last week if only one week post-op would be too soon."

"I understand. Yes, it really is too soon. We'll schedule you for next Monday and try again. The only reason Dr. Sidebotham tried to rush it is because you wanted to get it done before your wedding."

"Well, I'm actually wondering if I can wait until AFTER my wedding, at this point. Will the extra month or so really make a difference?"


"Hmmm...Let me talk to the doctor and I'll call you back."


Hope? Maybe?

My mom and I talked about it again and still agreed that there should be more discussion. My mom insisted that my recovery will depend, not only on my physical well-being, but also my mental well-being. If I have my wedding to look forward to, without worrying that it will need to be canceled at the last minute, I might fight harder in the long run. "They need to look at the whole patient," she said. "It's not only a medical issue. A lot depends on the mental aspect of all of this, too."

The phone rang again. "Hello?"

"Hi Suzanne, it's Eileen from Dr. Sidebotham's office again. I spoke to the doctor and she said it's just not possible to wait that long. The optimal treatment period is within a month after surgery. You'll start your treatment on July 11th."

Anger. Rebellion. Defeat.

"Fine, I'll start before my wedding, but I want to wait one more week until July 18th. My bridal shower is on the 17th, and I'd like to at least get through that without feeling like shit."

"Well, that's fine, but you'll probably still feel ok on the 17th if you start on the 11th."

"How's that possible if I'm starting chemo the same day I start the radiation?"


"Oh, you're doing chemo too? Well, they can bring you in and give you hydration. I'm sure you'll be ok."

My blood started to boil and all of the back-talk I'd had under control for the last two months finally broke free.

"Oh, really? Yeah, I'm pretty sure I'm not gonna risk that since they told me days four and five of each chemo cycle will be the worst. And since that will be my first cycle and I have no idea how my body will handle it, I'd prefer not to risk it. I'd like to wait until the 18th."

"Ok, you can do that. But if you start on the 11th, you'll be done with your treatments before the wedding."

"Not the chemo."

"Ok, but if you start on the 18th, you'll be at the height of the side effects on your wedding day and you might have terrible diarrhea."

This woman is pissing me off. I seriously want to hurt her like she's hurting me.

"How many days until the peak of the side effects?"

"About 10 days."

"Ok, so how does 10 days after July 18th turn into September 3rd?"

"Well, they start 10 days after, but the effects last through the five and a half weeks of treatment and continue for a few months after."

"Ok, so what difference does it make whether I start on the 11th or the 18th? Based on that time period, it's gonna ruin my wedding day either way, right?"

"Well, it might start to ease sooner if you start on the 11th."

"Fine. I obviously have no say in what's happening to me. Schedule it whenever you want. I'll do whatever you say."

"You have a choice, I'm just letting you know what could happen."

"I understand that. But if my wedding is gonna suck anyway, I'd at least like to enjoy my shower."

"It's up to you, but you need to let me know what you want because it's not only YOUR schedule we're dealing with here."

Oh, you did NOT just say that. You BITCH! Do you think this fits ANYWHERE into MY schedule? I spent the last two days assembling, sealing and stamping 108 wedding invitations I may not even be able to send out!

"You know what? I'll be there on Monday for the simulation. I'll have an answer for you then."


Beaten down.

No choice.


"Don't worry," Jimmi said as he hugged me. "We're not making any decisions until we talk to Dr. Leitao next Friday and he tells us what the pathology report says," my mom reassured. I was too weak to respond.

I looked over at the gorgeous, silver envelopes addressed with elegant, black calligraphy sitting on the counter. I couldn't even force a smile. I'm supposed to be excited. I'm supposed to be happy. I'm supposed to be counting down the 75 days left until I become Mrs. Kane.

But I'm not.

Three words keep circling around in my head. I'm trying so hard to keep them at bay, but they're pushing their way to the surface. What are those words?

I give up.

Friday, June 17, 2011

The Hysterectomy

I'd like to preface this post by letting you all know that I've been trying so hard to write since my surgery on Tuesday. I would start typing, but then the pain would kick in or the Vicodin would make me loopy. What you are about to read took me three days and a lot of drugs to accomplish. I will apologize in advance for the length of this post, and any part of it that might not make sense. Hopefully, I'll be back to normal soon...

Well, it's over.

My uterus, cervix and ovaries are gone forever. There's no turning back now.

The last few days are a blur. Maybe it's because I was pumping morphine into my vein every 10 minutes, or maybe it's from the Vicodin that replaced the morphine once the IV came out. Or maybe it's that I don't want to face everything that just happened to me because it's too painful.

But I need to face it.

The preparation for the surgery started on Monday, June 13th. I was instructed to drink only clear fluids all day. No food at all. I figured it wouldn't be too bad, but then the headache started. I never get headaches, and this one knocked me on my ass. Of course, I wasn't allowed to take any pain medication because of my surgery the next day, so I just had to deal with it. I couldn't see straight, I couldn't think, I couldn't move. The only thing that helped a little bit was putting an ice pack on my head and keeping my eyes closed.

At midnight on liquid diet day, I was told to stop all food and drinks until the surgery. But to make it a little more difficult, my operation was scheduled for 1:00 pm! I know afternoon procedures are usually late to start because of delays with patient in the operation room before you, so my hunger headache would have to stick with me for at least half of the day on Tuesday, as well.

I opened one eye when my alarm went off at 6:40 am. "I don't want to do this," I thought to myself. Again, the phrase "you don't have a choice" crept into my brain. I dragged myself out of bed and went into the bathroom to get ready. I stayed in the shower for an extra long time because I didn't know when I'd be able to have another one.

Jimmi came strolling into the bathroom as I was drying my hair. I looked at him with a frown and said, "I don't want to do this." He looked at me through the sleep that was still lingering in his eyes and said, "Don't worry! They're gonna make you better!" That didn't help me to chill out. "My vagina's broken!" I said in my best five year-old voice. "It's not broken," Jimmi said with a smirk, "It's just being modified! Maybe they'll make you bullet-proof!" I chuckled a bit, then quickly went back to my original grumpiness.

Since we had to fight rush hour traffic to be in New York City by 11:00 am to check in, we left at about 7:45. After a few bumper to bumper jams and a horrific line of cars at the Lincoln Tunnel, we decided to take the ferry over the Hudson River so we'd have a chance of getting there on time. Luckily, it was a smart choice, and we arrived at Memorial Sloan-Kettering Cancer Center by 10:45.

My parents were already there waiting for us as we arrived on the 6th floor. I gave the receptionist my name and for verification, he made me spell it, then give my date of birth. He then asked what procedure I was having. I thought for a minute, then said with a grin, "Breast enhancements." My joke didn't go over too well, as the receptionist looked carefully at his paperwork, then back at me with a serious expression growing over his face. "Ok, I'm having a radical hysterectomy. They're taking my fallopian tubes and ovaries too." That was the answer he was looking for, and he sent me off to the waiting room.

I barely had two minutes to sit with my parents when I was called into the prep area. Jimmi went in with me, but my parents had to wait until the nurses were done with me. I changed into my sexy hospital gown, threw my very stylish and way too big bathrobe over the gown, then completed my runway look with a pair of blue, non-skid socks.

A nurse came in to give my a quick exam and get my IV started. Then the anesthesiologist arrived to check me for removable parts in my mouth. She also brought an anti-nausea patch to wear behind my ear because I was terrified that I might throw up from the anesthesia. When everyone was done poking and jabbing me, I asked Jimmi to run back into the waiting room to get the pad of paper and pen I had left in my computer case.

"I need to write letters to the kids in case something happens to me." I said through the film of tears covering my eyes.

Jimmi made a face that should've been followed by his usual, "Stop talking like that!" But the words didn't actually come out of his mouth. He just did as I asked. A few minutes later, he was back. I took the paper and pen from him and began to write:

Dear Dylan,

I hope you know how much I love you and how proud I am of you every day...

Without warning, tears started to run down my face like a trickling stream. "You don't have to do this!" Jimmi said with a nervous face. "Yes I do. What if something goes wrong and I never see them again?"

The nurse came in and saw me crying. "I'm sorry, Honey. I didn't mean to hurt you with that IV." "It's not that," I choked out. She didn't pry, just said, "I'm all done with you now. If you have other family here, they can come in and see you until we're ready to take you to the O.R."

Jimmi went out to get my parents and I put my letter away. I wouldn't be able to write it with everyone there anyway. Just then, I heard a group of footsteps in the hall. Then my curtain opened and in walked Jimmi and my parents, followed by my friend, Jacquie, my brother, Fred, and Fred's fiancee, Meghan, who had just flown in from Nashville that morning.

Wow. They're all here to see me?

The next few hours were torture. It was about noon when everyone came in, and the surgery was set for 1:00. At 1:15, we were still waiting. Fred is the type of person who needs to play with everything he sees, no matter where he is. And a hospital is no exception to the rule. He quickly found a box of blue exam gloves and went to work making balloon art. There was a smiley face, a male body part balloon, a cat balloon, a dinosaur balloon, and my personal favorite, the artificial uterus balloon. Oh well, at least he made me laugh.

At about 1:45, they moved me to another area to wait some more. I still hadn't eaten, and my headache was coming back with a vengeance. My brother, Vince, showed up a few minutes later and joined the party. Finally, Dr. Leitao came in. "How are you?" he asked. "Not great," I said. "Do you really need to take my ovaries?" He explained for the second time that based on what they saw on the biopsy slides, all of the doctors felt it's the safest thing to do. He assured me that I'd start an estrogen replacement pill the following day, and it should help ease the symptoms of menopause. His eye soon caught the table of exam glove balloon creations Fred had made. "Wow, that's interesting. Maybe you should go down to pediatrics. They'd love you down there." Then, he asked my family to step out for a minute so he could put his initials on my abdomen to mark the ovaries. He also drew five little lines where he'd be cutting me. Because he was going to use the super fancy medical robot for the surgery, I wasn't going to have one large cut, I'd have five small ones.

My family was brought back in when the doctor was finished. We asked a few questions about the surgery, then Dr. Leitao left to get ready. About an hour later, it was my turn. I made sure to ask my mom to please call my kids when I'm out so they know I'm ok. Then everyone walked me down the hall until we got to the place where I would turn left to go to the O.R. and they would turn right to go to the waiting area. I hugged my parents, my brothers, and Jacquie and Meghan. Then I turned to Jimmi and put my arms around his neck and started to sob. "It's gonna be ok!" he said. "They're gonna make you better!" I kissed him gently. "I love you," he whispered, then we parted ways.

I walked the long hallway down to the operating room. I noticed how pretty the hospital was with its high ceilings and wooden doors. At the end of the hallway was an open door. "Here we are," said my guide. "Just be careful of the robot when you walk in."

I looked around at the huge room with only three colors, black, white and silver. I stared at the robot, which looked more like a giant spider than C3PO. I saw two nurses who were very attentive and sweet. I got up on the table and they covered me with a warning blanket. I was on my back, cold, scared and alone. Oh, great. Here come the waterworks.

"Don't worry! It'll be ok," said the O.R. nurse. I couldn't stop. "I'm supposed to get married in two and a half months," I blubbered. "I know. I saw that in your chart. Don't worry. You'll get there!" she said while handing me some tissues.

The anesthesiologist came into the room and said, "Ok, let's get this party started! What's your favorite alcoholic drink?" she asked.

"I don't really drink."

"Well, now's the time to start. What's it gonna be?"

I thought for a minute. "Grey Goose martini, extra dirty."

"Ok. And how many do you need to make you feel good?"

"About three sips."

"Good, then here's five." And she injected a cocktail into my IV.

The next thing I remember is hearing my name being called. I opened my eyes in the recovery room and thought, "It's gone. My uterus is gone." The recovery nurse asked about my pain level on a scale of 1-10, and then handed me a button. "You can push this for a dose of morphine every 10 minutes."


I really didn't have too much pain in my abdomen, but my right shoulder was killing me. Weird. About an hour later, my family was called to come in and see me for a few minutes. A totally different group than the pre-surgery clan started to wrap themselves around my bed. Of course, Jimmi and my parents were there. And Fred and Meghan were there. But this time, I saw my friend, Jean, my friend Andi and her brand new fiance, Eli, and my friend Kimberly and her boyfriend, Leo.

I looked each of my visitors over a few times, then my gaze stopped on Andi. I lifted my hand and used my index finger to point at her and signal "come here." She walked over to the head of my bed and I held out my hand to her left hand. "Let me see," I said gesturing to the sparkling diamond engagement ring on her finger. Andi lifter her hand to my face with an excited smile. I took a look and nodded in approval at her fiance, Eli. "Good job," I complimented. My glance stopped on Jean next. "How was work?" I asked. She replied with a smile, "It was good." I then shifted over to Kimberly's boyfriend, Leo, the firefighter. "Put out any fires lately?" I questioned. "Yeah, two days ago." "Cool."

My mom, dad and Jimmi gave me a few kisses of relief. Fred and Meghan told me how beautiful my hospital room was, since they had delivered my bags there earlier. Then, my mom let me know that my friend, Jacquie stayed until she knew I was ok. My brother, Dom, and sister-in-law, Lisa, had also been there. So had my parents' friends, Barry and Marcia.

Wow. All of those people drove into New York City just for me. It made me feel so loved.

Soon, the nurses asked my family and friends to leave so they could prep me to go to my room. Up to the 19th floor we went. The room was beautiful! There was a huge window with a view of the city and the three smokestacks Mel Gibson was constantly staring at in the movie "Conspiracy Theory". It had a pull-out couch for family, and a chair and a desk. There was a refrigerator and wooden built-ins on the wall. Even the door into the room was made of what looked like mahogany. My bed and I were wheeled into place, and I looked over at my mom, dad, Jimmi, Fred and Meghan, who were sitting there waiting for me. I was still pretty tired and a lot of the details are foggy, but at some point, everyone left to go to their hotel rooms except my mom and Jimmi.

A nurse came in to check on my pain level, and reminded me of the morphine pump. I quickly hit the button and felt some relief. "Can I have a drink, please?" I begged. "I'm sorry, you can't. Nothing to eat or drink until tomorrow. We don't want you to be sick from the anesthesia."

What kind of cruel torture is this?!?!

It was already after 11:00 pm, so I figured I should just go to sleep. A housekeeper came in to make-up the pull-out bed. My mom offered it to Jimmi, but he insisted she sleep there. He then took all of the couch pillows, laid them on the floor and covered them with a fitted sheet. "You learn this kind of stuff on tour. I can pretty much sleep anywhere," he joked.

The night was a blur. I remember thinking that I really had to pee, then realized I had a catheter to prevent my bladder from working so it could rest after being shifted all around during the surgery. At some point, my mom told me that when the operation was done, Dr. Leitao came out to talk to them. "Everything looked normal. I didn't see any visual signs of cancer at all. That's a good thing. We'll have the pathology report when you all come to see me in two weeks, and then I'll know more."

Wait, he didn't see anything? God, I really hope someone didn't make a mistake and mix up my original biopsy slides with someone else's. If I gave up my womanhood for nothing, I'm gonna be pissed. Beyond pissed.

Oh, shit! My kids!! "Mom, did you remember to call the boys to tell them I was ok?" "Yes, I did. They were very excited." Ok, good. I'll need to remember to call them before they go to school in the morning so they can actually hear my voice, I thought to myself.

And then we all went to sleep.

But you never get a peaceful night's sleep in a hospital. At 2:30 am, my IV started beeping and woke me with a jolt. "Ouch!" I screamed as my body jumped. The nurse came in to fix it. A few minutes later, I was woken again for my vitals. My blood pressure, temperature and blood oxygen level were monitored and recorded, then the nurse left. At 5:30 am, another nurse came in to give me two of my seven medications. Then at 6:30 am, I had a visit from Dr. Leitao's team. My five incisions were inspected and the doctor assured me that I could be discharged in a few hours. Really? So soon? I'm not really comfortable with that, but I guess she knows best. At 7:00 am, my breakfast order was taken, and that was it. No more attempts at sleep. It would be pointless anyway.

My mom and Jimmi got up after the doctor came in. My dad showed up a few minutes later complaining of the horrible night's sleep he had at the hotel. "Really?" I asked from my hospital bed, while sporting two IVs and a super-sexy catheter bag. "YOU had a rough night?" He looked at me and chuckled, "Ok, not as bad as yours. I'm sorry." I just laughed to myself because laughing out loud hurt too much. Soon, Fred and Meghan arrived to say good-bye. They were flying back to Tennessee at 11:00 am, but wanted to see me first.

When they left, Jimmi and my dad decided to go out to breakfast. My mom and I just stared at each other with a look of shock. My dad is willingly spending time with Jimmi. I must have pumped the morphine too many times because I think I'm hallucinating.

They returned about an hour later full of smiles. And since I had finally eaten as well, I was told I needed to get up and walk around before they could release me. With help from my nurse, Jimmi and my mom, I slowly eased myself out of bed.

"I'm dizzy." I whispered. "Then you need to sit," said my nurse. "I'll be back to help you in 15 minutes."

As I sat there in pain, feeling totally out of it, another nurse came in with more pills. A stool softener, an anti-inflammatory, and an estrogen replacement pill. That's the one I had been begging for since early that morning. "I don't want to have hot flashes. I don't want any symptoms of menopause. Please give me the estrogen immediately!" I pleaded with the nurse.

And then I was ready to walk. With Jimmi on one side and the nurse on the other, I was brought to my feet. "Give yourself a pump of morphine before we go," instructed the nurse. "Now place your hands on the IV walker and take small steps." I waited for her to hook my lovely catheter bag to the walker, and off we went. Slowly. Wow, I'm weak. My legs are shaking. I don't think I can do this.

But I did.

Very slowly, I managed to do a lap and a half around the entire 19th floor. But the pain in my right shoulder and abdomen started to become a bit crippling. "My shoulder hurts. I need to sit. I need to sit NOW." Jimmi carefully brought me back to my room and he and my mom helped me into a chair. "Oh my God! It hurts!" I was trying not to scream but the pain was unbearable. My breath became quick and shallow, "I can't breathe," I whispered. "Help me."

I didn't even notice the nurse entering the room until I saw her lowering the bed to help me in. "Ouch! Why is this happening? Can't breathe." I was hyperventilating from the pain. "I think I'm gonna throw up!" Jimmi, who shares my fear of vomit, didn't think twice. He grabbed the nearest garbage can and held it under me. Luckily, I didn't need it. Once they got me into bed, I couldn't control the volume of my cries any longer. I was yelling in agony, "It hurts! Make it stop!" It felt like someone was squeezing my right side and sticking a knife into my right shoulder at the same time. Every time one of the pains would come, I'd stop breathing. The nurses were bringing me heating pads for my side and my shoulder, my mom was rubbing my leg to calm me down, Jimmi was behind me with his hand on my left shoulder, and I could feel it nervously shaking as he touched me. My dad couldn't stand to see me in so much pain, and he retreated to the couch and just cried.

"Nothing's helping! I can't breathe! Make it stop!" It was the longest 10 minutes of my life until the debilitating pain finally eased up enough to let me catch my breath. "What was that?" I asked the nurses. "It was gas." "What? That wasn't gas! I don't believe that. It had to be something else." The nurse assured me that, unfortunately, after surgery, that can happen. To do the procedure, my abdomen was filled with gas to make it easier to see everything. They tried to empty it all out before closing me up, but it's impossible to get it all. It can make people feel like they're having a heart attack and it can take your breath away. "When you went for a walk, you got the gas moving around. That's what we want, but unfortunately, it might be a little painful until it passes." A little painful? Did that seem like a little bit of pain?

When the episode was over, my mom asked the nurse if she really thought it was safe for me to go home that day. The nurse was shocked that the doctors were even thinking of releasing me less that 24 hours after surgery, and after what had just happened, she calmly said, "You have the room until midnight. You can either leave later tonight, or stay until tomorrow. Whatever you think is best. But I wouldn't send her home now."

I stayed in bed for a while, then moved back to the chair. I was so scared to even try to walk again, but at some point, I knew it had to happen. Walking is the only thing that would move the trapped gas to one of my two bodily escape routes.

Just then, my friend Julie stopped by for a visit. Yes! Another reason to stall the walk! But not for long. She could only stay for a little while because she had to get to an appointment. When she left, I knew it was time to try again. Jimmi and my mom helped me up again. "I feel sick," I said as I slowly slumped back into the chair. They let me sit for a few minutes then got me up again. I held onto my IV walker and pushed the morphine pump. "Ok, I'm ready."

Taking baby steps, Jimmi and my mom followed me about a quarter of the way down the first hall. I was feeling so sick that I was actually walking with my eyes closed. "Suzanne, open your eyes. You can't walk like that. You'll fall!" I opened one eye and looked at Jimmi. "I don't feel well. I can't do this." He turned white with nerves. "Ok, we'll get you back to your room." "Can't," was all I could say. I closed my eyes and leaned on him. Luckily, my nurse happened to be walking by. "Everything ok?" she asked. Jimmi answered, "She's feeling sick. Is there a chair around here?" The nurse quickly grabbed a chair from a room across the hall and I forced my body into it. Not helping. "I'm gonna throw up." I whined. As Jimmi began to look around for a garbage can, my nurse attached an anti-nausea medication to my IV and started the drip. It worked almost immediately. That was close.

Jimmi helped me up. "Let's get you back to your room." "No. I need to walk," I insisted. And I did. With my mom and Jimmi tagging along for support, I made it around the floor three times. I was exhausted and finally agreed to go back to my room. They helped me into a chair where I rested for a bit waiting for the immense pain I had after the last walk. But it didn't happen. I was definitely sore and my shoulders still felt like someone was hammering into them with nails, but I could handle it.

A few minutes later, I noticed some chatter between my dad and Jimmi. "We're gonna head out for a bit and go to a guitar shop downtown. They might have the one your dad's been looking for." Jimmi announced. Whoa. That's their second male bonding date of the day. You mean all I had to do was have a hysterectomy to make my dad see what an amazing guy Jimmi is? Damn! Why didn't I think of this sooner? And then they were gone.

As my mom and I shook our heads and smiled at the irony of it, my friend Andi stopped by for a visit. I love seeing the huge smile on her face every time she plays with the new ring on her finger. "So, you're gonna be in my wedding, right?" She asked with a giddy grin. "If you want me to. Of course!" "You wanna be my maid of honor?" My mom spoke up, "I think I'm gonna cry!" I added, "Really? You don't care if I'm wearing a wig?" She laughed, "You can wear anything you want as long as you're there." Hugs were exchanged all around the room, and for a few minutes, no one was thinking about cancer.

My dad and Jimmi returned from the guitar store excursion empty-handed. "They didn't have the one he wanted, but the guy's gonna check around for it." Jimmi said right before he kissed me hello. "Oh, ok. Did you have dinner?" I asked. "Not yet." Then my dad said, "Come on, Jimmi, let's go get some dinner." "I guess we'll be back in a little bit," Jimmi said as they left the room together for the third time that day. I looked at my mom and Andi and just shrugged my shoulders. We were all happily confused about my dad's sudden change of heart.

They were literally gone for three hours. When they finally returned, still with smiling faces, I was relieved. "Awww, you're bonding!" I teased. By then, I was feeling much better. My IV was disconnected and the nurse had given me a sponge bath. The only thing I missed was my morphine pump, but it was quickly replaced by Vicodin. I felt like Dr. House! How he can down a few of those pills every hour and still function normally is beyond me. All I needed was one. My extremities began to tingle and sounds seemed to be echoing outside my head. My eyes glazed over and my words were slurred. (Side note, I had a pain attack about 30 minutes ago and Jimmi forced me to take a Vicodin. I'm currently typing under the influence. It's cool the way the computer screen dances around before my eyes.)

Once the edge was taken off the pain, I had Jimmi help me to the bathroom so I could brush my teeth for the first time in a day and a half. It felt so good. I also washed my face and brushed my hair. I was almost human again. Well, almost human with a few missing pieces. I'd been trying not to think about the fact that my abdomen was now hollow like an empty walnut shell. I stared at Jimmi and wondered why he was still here going through all of this with me. I hadn't even seen any signs of him wanting to leave. He's been so strong through all of this; I just hope he can deal with the rest of it.

I woke up the next morning and took the plethora of pills the nurse brought me. I felt much better than I did the day before, and I was looking forward to going home. Dr. Leitao stopped by for a visit and told me directly that there he didn't see any visible cancer in the organs he removed. Again, I hoped there wasn't a huge mistake. Then he said, "I'll see you in the office tomorrow when you have your catheter removed. I won't have any results yet, but I will when you come in for your follow-up on July 1st. But don't be discouraged if the nurse removes your catheter and ends up needing to put it back in. Your ovaries were still swollen from the egg retrieval and your cervix was still swollen from the LEEP in April. Your bladder was moved around a lot during the procedure because of those issues. Sometimes that causes fistulas, so after it finally does come out, if you have any urine leaks, let me know." "And what can you do to fix it?" I asked while thinking about how unattractive I'll be in a beautiful wedding dress with urine running down my leg every time I laugh. "We'll talk about solutions if we need to. Until then, don't worry about it." He shook our hands, wished us luck for the drive home, and he was gone.

It was now time for my catheter lesson. What a nightmare. My mom, Jimmi and I watched closely as the nurse explained how to change from the larger night bag to the smaller day bag that would be strapped around my leg. Any last shred of dignity I had was flying out the window. I was so embarrassed. Jimmi must be ready to run far, far away by now. She handed us a bag of catheter accessories and another bag of the four medications I was taking with me. Then she too wished us luck and vanished into the hall.

My chariot - or wheelchair - arrived at about 12:30 pm to take me to freedom. The warm New York City air felt so good on my face as I was gently wheeled out to the car. Jimmi helped me into the front seat, and I put a small pillow between the seatbelt and my abdomen to avoid and unnecessary pressure on my incisions. My shoulder was hurting like Hell again, even though I had just taken a Vicodin. Jimmi started to drive, but noticed my pained face. He took his right hand off the steering wheel and started to massage my left shoulder. I cringed with each bump in the road, and he apologized each time. A little over and hour later, we were finally home.

I made myself as comfortable as I could on the couch, while making sure my right leg hung down so the catheter could drain. After Jimmi unpacked the car, I said with humiliation, "I think I need to empty the bag. Can you help me?" "Of course," Jimmi answered without hesitation as he walked over to the couch to help me up. He held tightly onto my arm as I walked, hunched over, to the bathroom. He got down on his knee and lifted up my pant leg. He carefully unbuttoned the bottom of the catheter bag, held it over the toilet, and released the collected urine into the bowl. I can't believe he's doing this for me. I stood there horrified that I even allowed him to see me that way. But I needed help and he just did what had to be done. No complaints. No words of disgust. Nothing. He just did it.

Jimmi helped me back to the couch and the doorbell rang. It was my sister-in-law, Lisa, with homemade soup, a pasta dish and chocolate chip cookies. My mom arrived soon after with juices and pastina for me. Then the door opened again, and I heard my sweet little boys' voices. "Mommy!" they exclaimed! "We're so glad you're ok!" I quickly glanced down at my leg to make sure the blanket was fully covering my catheter. I didn't want them to see it. They approached me cautiously and I said, "It's ok to hug me. You just can't squeeze too hard." They were so gentle and perfect and I was so happy to see them. "We're gonna go to the playroom and make you something, ok?" Dylan said. "Ok." I stood up and walked into the kitchen to say hello to my ex-husband and his mother. Yes, my kitchen was now swimming with my current fiance, my ex-husband, my mother, my ex-mother-in-law and my sister-in-law. But no one felt uncomfortable and no one left the room. They were all just concerned about me.

"Mommy! It's done!" Dylan and Justin walked out of the playroom holding a magnetic board with magnetic mosaic pieces that spelled out "Cancer Sux". There was even a teal and white mosaic cancer awareness ribbon. I hugged both of them and kissed the tops of their crazy-haired heads. "Thank you. I love it." They smiled at me, and then I felt the pain starting up again. I didn't want them to see me hurting. I gave my ex the signal and he said, "Ok, boys. Time to let Mommy rest. You can see her again tomorrow." They complained a bit, but listened to their dad in the end. "I'll see you tomorrow, if you want." I said while hugging them both again. "Yes, we want to!" As soon as they walked out the door, I was back on the couch with a shoulder heating pad my mom brought for me.

"I'd really be fine if it weren't for this fucking shoulder pain. I don't understand why it keeps switching sides. Sometimes it's only in my shoulder, and sometimes it shoots back and forth between my ribs and my shoulder." Jimmi and my mom looked at me sympathetically, but they didn't know what more they could do when the pain medicine, heating pad and constant massages weren't helping. "You'll talk to the doctor about it tomorrow," suggested my mom. "See what he says."

My sister-in-law left and my mom and Jimmi got to work heating up the food she had made for us. My appetite wasn't completely back yet, but I ate enough to take more medicine. My mom planned on leaving around 10:00 pm, but her plans were changed when I had another severe pain attack like the one  I had in the hospital. I couldn't get comfortable. Every time I sat down, I felt like I was being stabbed in my shoulder and my ribs. I couldn't catch my breath. I stood up, hoping the walking would help if it really was gas, like the nurse had said.

After a few laps of the house, Jimmi helped me upstairs to get ready for bed. While he switched my daytime catheter bag to my nighttime catheter bag, my mom searched the house for the best place to set me up for the night. My bed was too high to step into, and the couch was too soft to support my body without causing pain. She finally decided on the recliner in my bedroom. She padded it with pillows of all sizes and rolled towels for support. Jimmi helped me into the make-shift bed, and the moment I was down, I started screaming in pain, "No! It's not working! It hurts! I can't do this! I can't breathe!" I saw the worry on Jimmi's face as he helped me back to my feet. My mom moved onto the next idea. Maybe my bed would be ok if I had a step stool to climb into it. She set up the pillows and towels in my bed. I stepped up and sat on the edge. Jimmi gently lifted my legs and eased them onto the bed. "No! Ouch! It hurts!" Strike two. Would I ever get to sleep? I'm so tired. I hate this. I hate it so much.

We went back downstairs to try the couch again. But first, Jimmi asked me when I had taken my last Vicodin. "It makes me feel weird." I said stubbornly. "I don't want to take it." "You need to take your medicine!" Jimmi scolded. He got the pill out of the bottle and handed it to me with a glass of water. "Take it." he said sternly. I had no choice but to listen.

By the time my mom finished making my very intricately designed couch-bed, it was 11:30 pm. She had called my dad a few minutes earlier to let him know she needed to stay at my house for the night. She couldn't leave Jimmi alone to deal with the amount of pain I was in. I carefully sat myself down onto the couch and laid my back against the pile of pillows and towels. The pain was still there, but it was bearable. "Tell me what will make you more comfortable." My mom said gently. "Maybe a small pillow under my back and a rolled towel to support my neck." She did what I asked and I was finally settling down. Jimmi plopped himself down next to me, my mom laid her head on a pillow at the other end of the couch, and we all fell asleep while watching "Get Him to The Greek".

I woke up a few times during the night because I was uncomfortable. Trying to shift and turn your body after major surgery isn't easy; especially if you need to make sure the catheter tube doesn't get kinked or twisted. But, somehow, I was able to get back to sleep pretty quickly each time. At about 7:00 am, we all woke up. My mom made sure I wasn't in pain anymore, and then she went home so she could get some things done before my doctor's appointment today.

Jimmi brought me my morning medicine, fed the dog and cats, checked to make sure my catheter was draining correctly, and then we both went right back to sleep. A few hours later I woke up screaming and smacking my poor cat off of my belly where she had just started to knead. Poor Jimmi jumped up out of a dead sleep, "What's wrong? Are you ok?" "The cat stepped on my stomach! On my GOD, that hurt! I smacked her. I feel so bad!" There was no way we were getting back to sleep after that.

Jimmi helped me off the couch and up the stairs to brush my teeth. We ate some breakfast so I could take another set of pills, then he brought me back upstairs to take a shower. "I need to go to the bathroom, but I'm scared it's gonna hurt." I confessed. "That's why they gave you stool softeners. You need to go." I tried, but I just couldn't. I was distracted by the urine-collecting tube sticking out of my body, then taped to my thigh, then leading into a larger, clear tube that emptied into a bag at the end. So gross. So not sexy. I walked out of the bathroom, defeated. "I just can't." I said with my head hung in shame.

My shower felt great. It was so nice to finally wash my hair after two days in the hospital. Jimmi stood by the door in case I felt dizzy at any point, then he helped me dry off when I was done. Once I finished drying my hair and putting on a little bit of makeup, Jimmi got down on the floor and changed my catheter bag from night to day, and strapped it securely onto my leg. We would be leaving in a few minutes for the appointment I had been looking forward to since I woke up after surgery. The catheter removal appointment.

"I really hope I pass the pee test, or they're gonna put it back in," I said nervously as Jimmi drove. "Don't worry! You'll be fine." he reassured me.

Sloan-Kettering's satellite office in Basking Ridge, NJ wasn't quite as busy as usual. My mom met us there and we sat in the waiting room for a record time of only five minutes before I was called. The nurse told me she'd be taking my catheter out first so we could get that over with, and then I'd see Dr. Leitao. "Can they come with me?" I asked while gesturing to my support team. "Sure, if you want." "Well," I said pointing to each of them, "she birthed me, and he's marrying me. It's nothing they haven't seen before."

We all followed the nurse to an exam room where she explained the procedure for removing the catheter and what I'd need to do to have it stay out. She held up a large syringe, about the size of a giant deli pickle and said, "First I'm going to disconnect the catheter. After that, I'll use this syringe to fill your bladder with sterile saline until you feel like you really need to pee. Then, I'll deflate the balloon that's holding the catheter inside you and pull it out. When I do that, you'll need to use those kegel muscles to hold it in while I run you down the hall to the bathroom. I'll put a collection container under the toilet seat to measure what comes out. As long as you go enough, we can leave it out. If you can't, I'll need to put it back in."

Sounds easy enough.

"Ok, here we go," she said while filling up the giant syringe and inserting the tip into the rubber end of my catheter. "It's gonna feel cold," she warned. I watched her squeeze the liquid into me and I jumped at  the strange sensation I felt. It was like peeing in reverse. "Ok, here comes the second one." Whoa. "I have to pee now," I said, hoping it was over. "Nope, one more." Squeeze. Then she went for a fourth round and I said, "I thought you were only doing three!" She laughed, "I don't want Dr. Leitao to think you're a wimp. You can handle four!"

After the fourth shot, I needed to go to the bathroom. She said, "Ok, let me deflate the balloon and take it out first." I watched her suck the water out of the device that kept the catheter in place with a smaller syringe. "Now take a deep breath so I can pull it out." I breathed in and watched her pull a giant tube out of me. I didn't have time to freak out or get light-headed because she had me up and stumbling to the bathroom. She put the collection cup under the toilet lid and turned on the faucet for urinary inspiration. I sat down and was able to relieve my bladder immediately. Thank you, God! I thought to myself. I did it!

I washed my hands and opened the door. Jimmi, my mom and about four nurses were standing against the wall clapping and cheering. I felt like a toddler who had just gone peepee on the potty for the first time. Maybe they'll give me a Dora the Explorer sticker as a reward.

The catheter nurse was done with me now, so followed Lisa, Dr. Leitao's nurse, into another exam room. Before she had a chance to say anything, Dr. Leitao walked in. "How are you?" he asked. "My shoulders are killing me." I said. "Hmmmm...well, it might be gas. But it also might be the position we had you in for the procedure. Your arms are literally strapped out to the sides, and you're pretty much hanging upside down through the entire operation," he explained. Well, I guess that would do it. He told me it should pass soon, and not to worry. Then Lisa said, "What are you doing about your wedding?" I said confidently, "I'm gonna get married. I'm not changing anything. As long as I can walk that day, I'm doing it." "You'll be fine," Lisa assured me. It was a very quick visit, since the pathology report wasn't back yet. "We'll know more in two weeks when I see you again," Dr. Leitao explained. Then Lisa said, "Have you pooped yet?" Questions are so strange after you've had surgery. Everyone wants you to fart and poop! "No, not yet. But I tried." "Ok," Lisa said in a boss-like tone, "you need to go home and poop. That's your job." I giggled and promised to give it a shot, and then we left the office.

I was so glad to be catheter-free. Walking was easier, sitting was easier, and I wasn't so self-conscious. We got to the house, and I attempted to do the job Lisa gave me. To my surprise, I succeeded this time! It took a while, and I really had to concentrate, but it happened. I called from the bathroom to Jimmi, "I'm pooping!" "You are? That's awesome!" he said. Wow. What a weird conversation I'm having with my future husband. I'm pretty sure we've covered the "in sickness and in health, for better or for worse" part of our vows already.

It's now a quarter after midnight and I'm still awake because I was determined to finally finish this post. I'm stoned from the Vicodin and swollen from my body being ripped apart. I'm wearing grandma sweats, and I have a blue heating pad around my shoulders, but I'm still here. I've made it through the first drop in my roller coaster's track. I can still see the loop in the distance, but I'll deal with that as it gets closer. For now, I'll focus on my recovery, and hope for an easy ride to the finish line where I can finally unbuckle my seatbelt and escape from this chapter of my life.

Wednesday, June 15, 2011

I'm Alive

I'm alive.

I'm still exhausted and thoroughly enjoying my Vicodin, but I'm ok.

I want to spill all the details of my last two days, but my eyes are refusing to stay open. All I can manage right now are some quick words of gratitude and then I need to sleep. 

I want all of you to know how much I appreciate your support through all of this. I'm positive that your good vibes played a huge party in my attitude about the surgery. I still wasn't ready to lose my entire reproductive system, but with all the well-wishes and prayers, I was able to gain strength to make it through. Thank you to all of you.

I'm really shocked at the amount of people who have offered to help me. My friend, Julie, set up a website for me that will help to assign people to do specific jobs when I need them. The address is  There are already 30 people who have signed up. 30 people have offered to help me without even knowing what I might need them to do. 30 people who would give up time in their own lives to bring me food, or take the kids or transport me to my treatments when they start. And the mix of people is amazing! There are friends from elementary school who I haven't seen since I was nine years old. There are friends from way out of state who really want to do anything they can. Then there are family members and other friends who I see more often, but it's still heartening to know that they really want to help me.

I've not only seen the support on the Helping Hands website, but the outpouring of positivity on Facebook, e-mail, phone calls and texts has been so uplifting. I'm so grateful to have all of you in my life.

I really need to sleep now. The drugs are taking over my brain, and I'm starting to not make sense. I'll do my best to catch up on the blog when I'm home tomorrow. I just needed to check in and thank all of you for being there for me.

Love to all.

Monday, June 13, 2011

Farewell, Old Friends.

Tomorrow I will say goodbye to my cervix, my uterus, my fallopian tubes, my ovaries and the very top part of my vagina.

I don't know how I feel.

I'm partly relieved that I can finally take the first step to getting better. I'm partly angry that all of this is happening to me. I'm partly terrified because I know there are so many things that can go wrong during and after the surgery. I'm partly sad because I know that pieces of my body will be taken out and thrown away like trash.

All I can say for sure is that I can't even think straight with this pounding headache I've had for the last four hours. Why did they instruct me not to eat at all the day before the surgery? "Clear liquids only," they cautioned. Generally, before any surgery, people are told not to eat or drink after midnight the night before surgery. I expected that. But I've been living on water, gatorade, Jell-o and plain, chicken broth all day today, and it's not working well for me. Between the nausea, the lightheadedness and the explosions behind my eyes, I can't even concentrate on what I'm typing. In one hour I'll be banned from the kitchen. Nothing to eat or drink after midnight until after the surgery.

But the operation isn't starting until 1 PM!! No food for 24 hours today, then no food or drinks for 13 hours before the procedure. I thought they wanted me to keep up my strength. This is NOT the way to do it.

Ok, I'm going to try to sleep now. I can't think. I have nothing intelligent or witty to write. I'm sure I won't be able to get in the computer tomorrow, but I'll do my best to try on Wednesday.

Thank you to all of you for your well-wishes and prayers. They are very much appreciated.

Sunday, June 12, 2011


Yesterday, I got some terrible news. But this time, it wasn't about me.

I got a call from my very close friend, Bob (changing his name for privacy), telling me that his partner, Joe (again, changing his name for privacy), has an inoperable brain tumor and he's just waiting to find out how much longer he will have with him.

No! No, that's wrong. That's not true! He was fine when I saw him a month ago!

"I don't understand. Why can't they operate?"

"It's everywhere."

The conversation ended with a promise of a visit before my own hospital stay, and well wishes to each of us from the other. I hung up the phone and was still for a minute. From my perch at the top of the stairs in my foyer, I could hear the kids playing happily in the family room. I sat quietly, trying to think of some way to help my friends in the two days I have left before I'm out of commission.

I brushed the tears from my cheeks and stood up on shaky legs. I stumbled into the bedroom and woke Jimmi from a sound sleep. "Hey," I whispered while gently touching his arm. He opened one eye and let out a grunt. "Joe has a brain tumor. There's nothing they can do."

"What?" Jimmi sat straight up. "There's gotta be something they can do." I shook my head and leaned on the tattoo of Jesus' face on his chest. We were both silent for a minute until he spoke, "What the fuck is going on with the world? Why is this stuff happening?" I had nothing intelligent to say.

As I headed back downstairs to make chocolate chip pancake puffs for the boys, my thoughts were whirling around like a tornado in my brain. I don't get it. There was no warning. One minute, Bob and Joe were one of the happiest couples I had ever met. They live together, work together and play together.  One won't even go out to dinner without the other. They're inseparable. Now, Bob is trying to figure out how he'll pick up the pieces of his life when Joe is gone, and quite honestly, it doesn't sound like he has much time.

It's not fair.

I'm not gonna lie. Three days ago, I didn't think anything could be worse than what's happening to me right now. I have cancer. I'm losing my uterus and my ovaries. I'm going to go through menopause at 36. I'll never carry another baby. I'll need 5 1/2 weeks of radiation treatments and four cycles of chemotherapy. I'm going to feel like shit. I'm going to lose my hair. I might need to postpone my wedding. But not once has any of the doctors indicated that I would lose this war. "It will be a difficult few months, but you should be fine when it's over." That's what they tell me.

Bob and Joe would trade places with me in a second. I have the one thing they don't have, but want so desperately.

I have Hope.

When I found out about my situation, Bob and Joe called me every day to check on me. "Call us any time no matter what you need. Even if you just want to yell at someone," Bob would say. When I would get down and depressed, Bob would confidently tell me, "I don't see an expiration date marked on your foot, do you?"

They were part of my rock. Now a piece of that rock is chipping away and I can't fix it.

I want to fix it so badly, but what can I do?

Tomorrow, we're going to visit Joe in the hospital. The hospital where he'll spend his final days in hospice. I don't know if I'll be able to do this. I need to be strong, but my spirit is too weak right now. How will it feel knowing that tomorrow might be the last time I ever see Joe? What if he doesn't recognize me anymore because the tumor is screwing with his mind?

I need to be strong for Bob. I need him to know that everything will be ok. But how can I say that? He's losing the love of his life. His soulmate. His best friend. His everything.

Tonight, I read a book to my kids. It was called "When Someone You Love Has Cancer". In the book, there was a chapter called "What if My Loved One Doesn't Get Better?" I very quickly assured my boys that we don't need to worry about that because the doctors caught my cancer early and they're taking it out, then giving me a bunch of medicine to make sure it's gone. I told them I'd be pretty sick for a few months, but then I would get better.

What will Bob tell Joe's nieces and nephews about him? Joe will not get better. Joe won't be coming home.

Yesterday, my life was put in perspective. As horrible as my battle is right now, I have a very good chance of doing a victory dance when it's all over. I wish Joe had the same chance.

Bob and Joe, I love you with all my heart.

Friday, June 10, 2011

Stop the Ride! I Want to Get Off!

You know that feeling you get after being strapped into the seat of roller coaster and you sit there waiting anxiously for the ride to start? It's that combination of fear and nerves, and a quick look back at the station as you wonder if you should scream, "Wait! I want to get off!" But before you have a chance, the car starts to move and it's too late. All you can do is hold on and go for the ride. There's no stopping now. It's going to happen whether you like it or not.

That's how I feel.

I've lost control of what my life used to be. I no longer have choices of what to do with my days. The doctors have become the operators of my wild ride and I'm helpless until they tell me it's all over. Up until this point, it's been that slow, steady, uphill climb to the top. I've reached the peak of the track, and all I can do is look down at the steep plunge in front of me and brace myself for the fall.

What I wouldn't give to be able to go back to the gym. It's been a month since I've lifted a weight or burned 500 calories on an elliptical machine. I can feel my muscles staring to atrophy, and tone is being replaced by flab. I spend my free time getting jabbed with needles, (always in the same vein in my right arm because all of my other ones suck) injected with contrast dye, lying still on a table so every area of my body can be scanned, and worrying about the fact that this is actually the easy part. I haven't even started speeding downward on the roller coaster track, though I can see the drop looming before my eyes. And off in the distance is an upside-down loop that I'm dreading more than the free-fall.

But after a Hellish two months, today, part one of the thrill ride ended. A brain MRI finished the long and arduous serious of pre-op testing. It may seem strange to have a scan of my brain when the cancer is in my cervix, but the doctors need to be thorough. Small cell cancers are tricky little buggers and sometimes one cell will sneak away from its friends, cross though barriers in the body and hide in another organ. It will stay very quiet until its host is least expecting it, then start multiplying so it won't be lonely anymore. When a small cell cancer is present, this can happen anywhere in the body.

So, Jimmi and I made our almost daily trip to Sloan-Kettering at 10:00 this morning. I swear, I'm thinking of having a mattress delivered to the hospital so I can just sleep there and save on the gas. We arrived and went up to the second floor to wait. Just as I finished filling out the forms I've gotten so good at completing, my name was called. Once again, I handed Jimmi my engagement ring, gave him a quick kiss, and followed the tech down the hall.

"Suzanne!" I heard my mom's voice. I turned around to see that she had just arrived, and I was glad Jimmi would have company in the waiting room. I gave a quick smile and wave, and disappeared through the doors into the testing area.

"Have a seat. A nurse will be in shortly to start your IV so we can inject the contrast dye during the test." Yes, I know the drill. I could probably have done it myself by now. As he walked out of the room, I started to shiver. Cold? Nerves? Who knows? I just want to be done with this part.

The nurse came in a few minutes later. "You're back again?" She said with a friendly smile. "Yeah, I really missed you." I said sarcastically. "Can you please do me a favor?" She waited for me to continue. "I only have one good vein, and it's so beaten up and sore. Can you please try to find another one somewhere?" I held out both arms so she could look. Immediately she made a face that didn't give me much hope. "This is a great vein," she said while pushing on the right arm to feel the one vein that was bruised from overuse. "The last nurse said I was developing scar tissue because I've literally been stuck 5 days a week for a month. I feel like a junkie!"

She took pity on me and pressed all over the middle of my left arm until she said, "I think I found one I can work with." She tightened the tourniquet and asked me to make a fist. "I little pinch," she said as she inserted the needle into the virgin vein.

OUCH!! Oh my GOD! Ok, I'll never ask to use another vein again. Lesson learned. Holy CRAP!!

After some pulling and pushing back and forth, the IV was finally taped into place and the nurse left me to wait for the tech to come back. Forty-five minutes later, he arrived. "I'm so sorry for the delay. We had two emergencies and we got backed up." Whatever. Just finish up what you need to do with me so I can get out of here.

I followed him down the hall and we stopped at a metal detector. "Step in, please." I did as I was told and the machine beeped and lit up. The tech looked me up and down. He eyed the button on my jeans, then his gazed moved a little bit higher. "Are you wearing an underwire bra?" he asked. "Yes." "It's ok, we won't be going that low. Come with me."

The room was cold and white. I stood there looking at the huge machine in front of me thinking to myself, "I'm so over this." "Ok, you can lie down on the table and put your head here," he said pointing to a round cradle with a sheet over it. I followed his instructions, then he covered me with a blanket and handed me earplugs. "It's pretty loud in the machine." Yeah, I know. In the last month, I've become a professional. Then he handed me a small, rubber object and said, "This is your panic button. Squeeze it if there's an emergency or if you just don't want to do this anymore."

I can do that? You mean if I squeeze this little round ball, I can stop? It will all be over. I don't want to do this anymore! I don't want to do this anymore!

Oh. He just meant the test. Ok, let's get on with it.

The tech padded my head on either side to remind me not to move, and off he went into the control room. The table started to move backwards, and I closed my eyes. I'm a train going into a tunnel. A subway train in New York City. It's dark in this tunnel. And loud.

Beep! Beep! Beep! Click! Click! Click! Buzz! Buzz! Buzz!

The train thing isn't working. Let's try the tanning bed again. I'm in a tanning bed. I'm warm and toasty.

Beep! Beep! Beep! Click! Click! Click! Buzz! Buzz! Buzz!

It's too loud. Tanning beds aren't this loud. I started to count. Hmmmm. There were eight beeps followed by seven clicks then eight more beeps followed by eight clicks. Then the pattern repeated. I tapped my hand to the beat. Ah, Jimmi would be proud! Eight, seven, eight, eight. Eight, seven, eight, eight. Eight, seven, eight, eight. This is working. Wait! The machine stopped. I'm moving out!

"Ok, ma'am, it's time to give you the contrast dye." In came the nurse to give me the injection. Two minutes later, she was gone and I was moving back into my beat lab. Damn! No more patterned beeping and clicking. Just obnoxiously loud varieties of noises echoing through my head.

"Ok, ma'am, we're done."

The tech took out my IV, unpadded my head and asked me if I had anymore tests today. "Nope. Done with all of my testing now." I said with relief. He questioned me some more, "Are you going up for any chemo treatments now?" Reality of that loop on the track not so far in the distance hit me in the head like a brick. "No, I haven't started that yet." "Ok, ma'am, I'll show you out." Stop calling me ma'am! How old do you think I am?

I walked out to the familiar waiting area and found my mom and Jimmi with a large Panera bag by their feet. "I got lunch!" my mom announced. I forced a smile and we all walked to the lounge area to eat.

The testing is over now. The roller coaster is starting to teeter at the crest of the track. On Tuesday, it will leave its safe platform and shoot straight down, building momentum as it goes. There's no stopping it now. I just hope my seatbelt is tight enough to keep me safe until the ride is over and I can finally get off.