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.


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  2. Girl, I am sitting here crying right along with you. Not because I think you can't do this, because you can, in fact you are going to give them all HELL-- but because it's a long road and there is so little any of us can do to make the road shorter. For whatever it's worth, we are all going down the road right along with you to whatever extent we can, and even though you and you alone must truly bear this burden, never doubt that you've got company on your journey. It is your destiny to come out of this a hero! Our hero. xoxoxo.