An Unexpected Vacation...Sort Of

The last few days are a complete blur.

I really want to write a detailed account of everything that went on, but I'm not sure if my memory has retained it all. Here's my best crack at it!

Jimmi and I returned home from Sloan-Kettering's Urgent Care department at about 2:00 am on Wednesday, June 29th. All of my tests seemed to be normal, and there was no reason to keep me, even though I was still having severe lower back pain. 

After a few hours of terrible sleep, I got out of bed and started my day with a killer headache. The kids were coming back in a few hours and I needed to make sure I was feeling well enough to pretend I wasn't in pain. 

Dylan and Justin were dropped off at about 1:00 pm. I did my best to stand up straight, walk normally and smile. It wasn't easy. Luckily, my mom came in a few minutes later and took over my motherly duties, and I flopped onto the couch. My stomach started bothering me and I couldn't figure out why.

As my mom got the boys ready to go to their music lessons, I was quickly becoming more and more nauseous. Honestly, there's nothing I hate more than throwing up, and it was starting to get to that point. "Mommy!" I whimpered without fully opening my mouth. It's a habit I started when I was pregnant and sick all the time. Whenever I'd get that feeling of total nausea, I'd close my eyes and lie perfectly still. I'd try not to open my mouth too wide, for fear of vomit escaping. Usually it didn't work, but I'd try any trick I could to not throw up. My mom rushed over to the couch so she could hear me. "I'm so nauseous, Mommy. Please call Lisa at Dr. Leitao's office and see if I can take one of the anti-nausea medicines Dr. Gorsky prescribed for the chemo."

My mom looked at the clock. It was 4:55. The chances of Lisa still being in the office and available to answer questions were slim, but she handed me the phone so I could dial the number. "Hi, is Lisa still in?" I heard my mom say, then she walked into the laundry room and her voice became muffled. A few minutes later, she strolled back into the kitchen, still speaking on the phone. "Hi Lisa..." Oh, thank God, she's there! I thought to myself. I heard my mom tell her I was feeling sick, then I heard her start to list the anti-nausea medications I had, then she thanked Lisa and hung up.

"She said you can take this one," my mom said while handing me an oval-shaped, white pill. I immediately put it in my mouth, chugged some Gatorade, and closed my eyes again. "She said the UTI can cause nausea, and the antibiotic for the UTI can cause nausea and Vicodin can cause nausea." Awesome. It's a tummy trifecta! 

My mom told me to call her if I needed her, then got the kids into the car and left for music lessons. Not even five minutes later, my jaw loosened its grip and I was able to open my mouth again. I sat up and opened my eyes. It was gone! The nausea was gone! If that pill works as well when I'm on chemo, I'll be one happy girl! I called my mom to let her know I was ok. "Hooray!" I heard the boys screaming from the back seat. In fact, it worked so well, that on their way back from their post-music McDonald's trip, I asked them to bring me a chocolate milkshake and large fries. And I finished everything!

I woke up Thursday morning with the same lower back pain I'd had all week. I managed to make the kids breakfast, but ended up back on the couch shortly thereafter. The boys were worried, and I tried to play it off like I was just a little tired. Jimmi could see what I was really feeling and decided it was best to get the boys out of the house. "Hey guys, do you want to go to the driving range?" he asked with childlike excitement. "Yeah!" they both shouted and ran to get their shoes on. I looked at Jimmi with thankful eyes and he leaned over to give me a kiss. "I'll go tire them out. It'll be fun!" he said. And they were out the door. An hour later, Jimmi called. He had taken the boys to the driving range, then the bagel shop. Now they were on their way to the park to play basketball. Wow. Just when I think I can't love him any more than I already do, he proves me wrong.

I popped a Vicodin and stayed on the couch. What is wrong with me? Can't I have one day without any kind of pain?

Later that night, after the kids were in bed, I was sitting at my desk trying to write. My eyes were burning and my head was heavy. My lower back was still torturing me and my legs were achy. I noticed the thermometer sitting in front of me and picked it up. I pushed the button, held it on my forehead and waited for the beep. It spoke to me, "Your body temperature is 100.9 degrees Fahrenheit," said a female voice with a British accent. "What?!" I shouted. I took it again. Same result.

Shit.

I called my mom. "I have a fever. They're gonna make me go back to the hospital. I don't wanna go!" I cried. "Just relax. Wait a few minutes and take it again. Call me back."

Over the next half hour, I took my temperature every five minutes. When it got to 101.6, I knew I couldn't wait any longer. I called the answering service at Sloan-Kettering and waited for a call back from the doctor. I let Jimmi know we'd probably need to go, and I called my mom back with the same information. 

The kids are here. What will I do with the kids?

Just then, the boys' first babysitter, Jacqueline, who's been living with us for a few months, came downstairs. I explained the situation, and she said very calmly, "I'm off tomorrow. I'll obviously be here tonight, but I can stay with them until their dad picks them up tomorrow. Just do what you need to do." I thanked her and breathed a little sigh of relief. The last thing I wanted to do was rip them out of their beds in the middle of the night and drive them to their dad's house.

The phone rang. "Hi, it's Dr. Kam, one of Dr. Leitao's fellows. I hear you have a fever?" I explained my symptoms to her and she paused for a minute before she said, "I know you don't want to hear this, but I think we need to see you back here tonight." I glanced at the clock. It was 11:30 PM. "Ok, I'll be there as soon as I can," I forced out. I hung up the phone and slumped down in my chair. "What did she say?" Jimmi asked. "We need to go to the hospital again," I whispered. 

I called my mom to let her know. "We'll meet you there," she said without thinking twice. "No, it's ok. We can handle it," I assured her. "If they tell you anything or if something happens, I want to be there. We'll see you in a little while." And that was it.

I went upstairs and packed a small bag. I had a feeling they were going to want to keep me for a night. I quietly tiptoed into Dylan's room to make sure he was tucked in and to give him a kiss."Mom?" He startled me. "Dylan, why are you awake?" "I couldn't sleep. What are you doing?" Crap. Should I tell him the truth? What if he wakes up in the morning and walks into my room and I'm not there? He'll be scared. But if I tell him what's going on, he'll be scared too. Think! "Remember how I wasn't feeling well before you went to bed?" He nodded. "Well, I have a little fever, and the doctor thinks it'll be best if I go to the hospital and get some medicine. Jacqueline will be here with you and Justin, though, so you don't need to worry." His hazel eyes welled up with tears and his lip started to quiver. "But I don't want you to go to the hospital! Are you ok?" I stayed calm. "Yes, baby, I'm ok. The doctor just needs to have me come in for a different medicine. This isn't the medicine that will make my hair fall out. It's just regular stuff." Dylan reached up and wrapped his arms around my neck. "I love you so much, Mom. I want you to be ok." Maybe I shouldn't have told him. I feel terrible! "I love you too, Bud. I'm gonna be fine. I really need to go now, though. Don't worry. Try to get some sleep and you can call me as soon as you wake up in the morning, ok?" He sniffed a few times and nodded. I blew him another kiss and walked out of his room. Wow, that sucked. I really hope Justin's asleep. I slowly crept into his room and saw that his eyes were closed. I breathed a sigh of relief and walked over to the bed to pull up his covers. His eyes popped open, "Hi Mommy." I'm not doing this again. "Hi, Baby. I'm just tucking you in. Get some sleep. I love you." He closed his eyes and said sleepily, "I love you too. Good night." I kissed his cheek and left the room.

By the time we got out the door, it was 11:50 PM. I was exhausted and felt achy and just plain crappy, in general. Jimmi was driving, and I tried to close my eyes for a bit but the pain in my back wouldn't allow me to relax. Luckily, there wasn't any traffic, and we made it to the hospital in about an hour. 

It was like deja vu. We repeated the same steps we had exercised on Tuesday night until we got through the Urgent Care doors. Since it was after midnight, the crew in the main waiting area had left for the night. We were instructed to go straight back to the nurses' station to check in. One of the nurses we had seen on Tuesday night waved as she saw us walk in. Dr. Kam let them know I was coming, so they were expecting me. I was told to go to curtained-off cubicle number 10 and wait for a nurse. 

We were only in there a few minutes when a young, tall and amazingly handsome male nurse walked into my room. Wow! I looked at Jimmi and smiled. He just shook his head at me and laughed. He knew exactly what I was thinking. The nurse opened his mouth, and a deep, rich tone came out, "Hi, I'm Kerry (Carey?) and I'll be your nurse tonight." He wrapped a blood pressure cuff around my arm and stuck a thermometer in my mouth. Ok, sexy boy. You can be ANYTHING you want. Maybe we can even play doctor later?? "Hi, I'm Dr. Kam," said a voice that broke me out of my daydream. Kerry/Carey looked up at the doctor, "100.6," he said, then turned to me, "I'll finish up when the doctor is done with you." No, don't go! Don't you want to hold my hand? I'm really scared! Maybe you can even give me a hug and let me squeeze those biceps, and..."So, you still have a fever," Dr. Kam crashed my train of thought again! "I think we should keep you tonight so we can see what's going on. We got your urine culture back from the other day and it was negative." What? How is that possible? "I think we need to repeat the CT scan of the urinary tract to make sure the small pocket of fluid hasn't gotten any larger or become infected. I think we'll also start you on IV antibiotics and maybe even some fluids because you look a little dehydrated. Any questions?" Nope. I think she covered it all. I shook my head and she was gone.

Ok, Kerry/Carey! You can come back now!

But my parents came in instead. I pouted at my mom and she sat on my bed and started to scratch my back. I told them what the doctor had said, and since we knew we'd be waiting a little while for the CT scan, my dad decided to go to the lounge and read while Jimmi, my mom and I stayed in my cubicle.

All of a sudden, a sound broke through the silence and turned me white as a ghost. A man two cubicles from me was vomiting. But he sounded like he was going to die. The coughing and moaning and heaves went right through me. I started to physically shake. I curled up into fetal position and threw my hands over my ears. I could still hear him. I pushed down harder, but it didn't help. He's not stopping. Oh, my God! Will that be me when I'm on chemo? Is that what I have to look forward to? He kept going. I clenched my teeth and squeezed my eyes tightly together until the tears fell out onto my pillow. "Make him stop!" I cried quietly to my mom, "Please make him stop!"

It was literally a ten-minute long session of torture before he finally stopped. I was sweating and shaking and scared to death. I had to go to the bathroom, but was scared to leave my room because I didn't want to see him. I couldn't see him. I can't go through that. I don't want to go through that. My mom rubbed my back and Jimmi rubbed my leg until Erin, the familiar nurse from Tuesday night, entered my cubicle with blood collection supplies and an IV. "Sorry it took me so long," she apologized. "What happened to that guy?" Jimmi questioned. Erin made a face, but before she could answer I said, "No. I don't want to know."

As she looked for a vein in my arm, I told Erin that I only had one good one. "Are you kidding me?" she said. "You have great veins! Look at all of them! Have you started chemo yet?" I shook my head, "July 18th," I said. "Well, that's when you'll see how many you really have. Chemo isn't good for your veins. It really kills them. Have you thought about getting a mediport?" she asked. I knew she was talking about a little device that stays on your chest while you're going through chemo. It stays in place so the nurses don't have to stick you every time you go in for a treatment. The problem is, it doesn't come out on non-chemo weeks. It's there from the very first treatment, until the last cycle is over. For me, that will be four months. "No," I said sharply. "I don't think it'll go with my wedding dress." She looked at me with surprise. "I thought you two were already married! When's the wedding?" "September 3rd," I sighed. "No," she agreed. "it definitely won't go with your dress. You're right." Erin smiled and said, "Ok, I'm gonna start your IV." I saw that she was going for my forearm and I turned away, "It's gonna hurt!" I cowered. "Nah, I'm good! You won't even feel it." She was right! Then she put some tape over it and said, "The worst part is when they rip the tape off to get it out. Sometimes it actually hurts more coming out than going in." And without missing a beat, my 68 year-old mother shouted out, "That's what she said!"

Erin took a few vials of blood, then told me we just had to wait for a room and I'd be going upstairs. "What about the CT scan?" I asked. "I think they're gonna do it tomorrow since you're staying." "Oh!" Suddenly, I remembered the weird feelings I had after they injected me with contrast dye the other night. "Last time they gave me the dye, I felt like my throat was closing up, I got a red blotch on my chest and a terrible headache afterwards. Is that bad?" Erin looked concerned, "Yeah, you should probably mention that to them. They might need to skip the dye next time."

When Erin left, Kerry/Carey finally came back in. As he walked by my mom, I purposely looked at her face. Her eyes opened wide and she looked at me, motioned to him and mouthed, "Wow!" I giggled and mouthed back, "See? I told you!" Jimmi looked at both of us and shook his head. "You two are so bad!" Nurse Hottie did whatever it was he had to do with me - unfortunately, it wasn't what I wanted him to do - and left. Then Erin showed up with a wheelchair and we all headed up to my room on the 19th floor.

It was 3:00 am when I got to my room. I changed into my hospital gown, got into the horribly uncomfortable bed, and prepared myself for a sleepless night. The aide pulled out the chair-bed for Jimmi, and my parents went to sleep in the lounge. My nurse took my vitals and told me she'd let me sleep until 5:00 before she started my fluid drip. I closed my eyes and drifted off.

Before I even had time to dream, the nurse came back and hooked me up to an IV bag. That was the end of my sleep. At 5:15 an aide came to take my vitals again. At 6:00, I got up to pee. At 6:30, they brought me some medicine. At 7:00 Dr. Kam came in to check me out. Then I was up for good. She looked at my incisions, listened to my lungs and told me the plan for the day. I honestly have no idea what she said because I was still basically asleep. But then my hospital room phone rang. "Do you want me to hand that to you?" Dr. Kam asked. I nodded, confused about who even knew I was there and why they wouldn't just call my cell? "Hello?" "Hi Suzanne, it's Dr. Leitao." Oh, crap! I had my follow-up appointment with him that day and now I was going to miss it! Funny that the one day he has office hours in New Jersey, I'm in the hospital in New York. "I just want to let you know that I know you're there, so you obviously won't make it in to see me today. I think I want you to stay there for at least another night or two so we can get the fever under control and get all the blood cultures back. I'm thinking you probably won't go home until Sunday, though, because we like you to be fever-free for 24-48 hours."

What?! I figured I'd be there for a night. Not THREE nights!

"Ok," I said. What else could I say? "I know we were supposed to meet today so I could go over the pathology with you," Dr. Leitao continued. "I also know Dr. Gorsky told you what we found. Do you have any questions?" My brain wasn't working. "Yes, I have a million questions, but I can't think of them right now." Think, damnit! Think! "Do you think you got it all?" I asked. "Yes, we do. It was pretty contained to the area of radiation, but it was in that one lymph node, so I advise you not to wait too long to start treatments." Yeah, I've heard that before. "I'm starting on the 18th," I told him. "What stage am I in?" Before the surgery, all the doctors were going between 1a or 1b or some subcategory of one or the other. "Well, finding it in the nodes doesn't have any affect of the staging, but the fact that it was starting to grow in the parametria (tissues next to the cervix) means you're in stage 2a." I didn't say too much. Why wouldn't I expect more bad news? It's been a running theme with me for the last few months. I thanked him and told him I'd reschedule for next week so we could speak in more detail. He told me he'd be off for the weekend, but his partners and fellows would keep him updated on my condition at all times.

I glanced over at Jimmi, who was still sleeping in the chair bed. I swear, that boy can sleep through anything. Then I texted my mom in the lounge, "Are you awake?" She answered quickly, "Yup. Be right in." I could see that the bags under her eyes were a matching set to mine as she strolled into my room with a big smile on her face. "Good morning, Princess. How do you feel?" How can it be that I'm 36 years old, but still feel like a little girl when I'm sick and my mommy is around? "I'm ok, I guess. Dr. Leitao called. I might be here until Sunday." She thought for a minute, "Ok, then maybe we should send Daddy and Jimmi home for a bit to get cleaned up, and that way, Jimmi can bring you anything you need from home. I'll stay here with you so you won't be alone." Sounded like a good plan to me. 

Soon, my day nurse came in to introduce herself and start my IV antibiotic. "You'll get this every six hours at 9 and 3." She asked if I had ordered breakfast yet, then told me not to eat it until she checks with the doctor because I might need to fast for the CT scan. I then explained my reaction to the contrast dye, and she assured me that she'd let the doctor know that as well. 

My breakfast was delivered to my room about 9:30, and I called the nurse. "Do you know if I'm allowed to eat?" I asked. "Yes, the scan has been canceled. Go ahead." They canceled it? Awesome! But I didn't eat. I was so tired, I just drifted off to sleep.

"I'm here to take you for your ultrasound," said a voice that shocked me into consciousness at 11:00 am. "What? They said it was canceled." The medical transporter looked confused. "Hold on," she said as she walked out of my room. Both she and the nurse came back a minute later. The nurse explained, "The CT scan was canceled, but the doctor wants an ultrasound of your legs to check for blood clots. Sometimes they can cause fevers." Oh, ok. I've had ultrasounds before. Piece of cake.

She wheeled me down to the ultrasound room, making sure my bed bumped into every corner we turned. When we got there, a technician took over my care and started the test. She put the familiar blue gel on the ultrasound wand and lowered it down to my upper thigh. I cringed, waiting for the cold gel to touch me, and when it did, I was surprised, "It's warm!" I said a little too loudly. The tech laughed, "Yes, we use gel warmers." She continued to move the wand up and down my right leg, then up and down my left leg. When she was done, she wiped off the gel and said, "Everything looks fine. I don't see any clots." Yes! Good news!

Jimmi and my mom were waiting in my room when I got back. My dad had already left. "Ok, I'm gonna go now, Pumpkin. I'll be back later. Text me when you know what you want me to bring back for you." Jimmi leaned over and kissed me goodbye, then he headed home for a little while. My mom looked at me, "We need to get you up and walking. It's not good for you to be in this bed all the time." She's like a drill sergeant. No mercy!! I did as I was told and forced myself to get up and walk a few laps around the 19th floor. As we were passing by the elevators, I saw a sign with a picture of dogs in costumes. It said "Therapy Dogs". I remembered that the last time I was in the hospital for my surgery, I had asked about the dogs. The nurse had told me they come on Fridays. Today was Friday! "I want a therapy dog!" I exclaimed. My mom laughed and headed over to the nurses' station. When she met up with me around the next lap, she said, "Ok, I signed you up! They come between 1 and 3." I smiled and we kept walking. 

At 1:00, my mom and I went back to my room to wait. We watched TV and talked, and waited some more. The nurse came to check my temperature, which had been hanging in the 99 and change range all day. We asked about the dogs again. "Oh, they'll be here soon," the nurse said. At about 2:30, my friend Jacquie came to visit. She brought me hugs and tabloids; exactly what I needed! But still no dogs. "It's a holiday weekend," my mom said. "Maybe they're not coming." I pouted, "But they said they were!" I insisted. 3:00 came and went with no dogs. We asked a few more times, and all the nurses swore they'd be there. Finally, at 5:00, we gave up. I have no idea why I was so bummed over a visit from some dogs, but I really was. 

After Jacquie left, my mom mentioned that she had heard there was a terrace on the 15th floor where I could go outside and get some air. "Do you want to check it out?" she asked. "Sure. Air would be nice." We told my nurse that I wasn't plotting an escape, and we were just heading to the 15th floor. She nodded and off we went.

When the elevator opened four flights down, I saw glass doors marked "Patient Recreation". My mom and I walked through them, and down a green, carpeted ramp. There were other patients there doing crafts and playing games. There was another sign pointing to the patient's library, and another one leading us to the terrace. We walked out the automatic doors and the warm air hit my face. I walked to the railing, looked up at the blue sky and down at the busy street. There were a few people on the terrace, but they mostly looked like visitors. We sat down on some chairs and breathed in the smells of New York City. Luckily, we weren't at street level, so the stench of garbage and urine couldn't reach our noses. We stayed there for a little while, but being that I was wearing a hospital gown and robe to hide my exposed bottom, I got hot very quickly. When I started to sweat, we went back inside so my body temperature didn't get too high.

We got back to the 19th floor and ate dinner in the lounge. When we were done, my nurse took my temperature. "100.1," she said. "No! It's going back up!" She looked at me and said, "It's still not really what we consider a fever yet, but if you want it to go down, you need to walk!" 

Soon, my friend, Andi, and her fiance, Eli, walked into my room. "We were just about to go for a walk," my drill sergeant/mom said. "We like walks!" Andi grinned. As the four of us made our laps around the floor, my mom talked about our day. "We found out there was a terrorist downstairs," she said nonchalantly. What?? I didn't know that! How did I miss that? Andi and Eli looked terrified and they stopped walking, "What? Really?" Andi asked. My mom didn't seem phased by it. "Yeah, so we went down to see the terrorist..." I stopped her, "What?" She looked at me and seemed very confused. She tried again, "We went outside on the terrace. Remember?" Oh, my God. I started to laugh, "I thought you said terrorist!" Andi sighed with relief, "I heard her say terrorist too!" My poor mom just stood there with a funny look on her face, "TERRACE! TERRACE! I said TERRACE!" Andi and I were hysterical. "It still sounds like terrorist!" My mom gave a fake pout and said, "Verandah!"

We headed back to my room, and Jimmi arrived a few minutes later. My friends left and my mom headed to the lounge to rest. It had been a very long day. I got into bed and my night nurse came in to introduce herself, then said, "You have such beautiful hair. I noticed it as you were walking. It's so beautiful!" Ok, she's complimenting you, I said to myself. Don't be a bitch because she should know it's gonna fall out soon and telling me how nice it is just makes it worse. I controlled myself. "Thank you. Too bad it's gonna fall out soon." She looked a little thrown by my comment. "You know they can make a wig with your hair, right?" Hmmm, not really helping. "Yes, they've already cut some." I pulled back my hair to reveal a patch of short pieces underneath the long. "They cut it in four places like this." She looked surprised, "You mean your hair was even thicker than it is now? Wow! You have REALLY nice hair!" What the Hell is wrong with this woman?! All I could do was say, "Thank you."

I slept as much as I could between the nurses coming in and out of my room. Early Saturday morning, my mom went home to take a shower and get some things done. A little while later, the doctor came to see me and confirmed that I'd need to stay until Sunday because they'd be switching me to oral antibiotics today and needed to make sure my fever stayed down for 24 hours after the switch. I woke Jimmi and gave him the news, then I called my mom to tell her. "Ok, then I'll do what I need to do and we'll be back there in the afternoon." I hung up and thought for the millionth time how amazing my parents are and how lucky I am to have them. I got out of bed, saw that Jimmi had fallen back to sleep, and decided to go for a walk by myself.

I noticed that the pain in my back had just about disappeared, and I was feeling much better all around. When I looked down at my stomach, I could see that all of the puffiness that had been there only a day ago was almost completely gone. It actually looked like I had lost weight overnight. Maybe I really did have a weird infection. Maybe the pain and bloating weren't from the surgery at all. Maybe the IV antibiotics were exactly what I needed to make everything go away. Whatever it was, it seemed to be gone and that made me happy. It was the first time in almost three weeks that I was almost completely pain-free.

When I got back, I woke Jimmi again and showed him my stomach. "Whoa! It's all gone!" he said. "That's crazy!" Then I decided that I wanted to him to see the terrace - not the terrorist. We went downstairs to the 15th floor, but what I saw that day scared me. The recreation area was a bit more crowded than it was the day before. There were patients in every stage of treatments; most were hooked up to very large IV machines with multiple bags hanging from every hook. I tried not to stare, but I couldn't help it. These people were receiving chemo treatments. That would be me soon.

We walked out to the terrace, and almost every chair was full. To the left of us was an older man in a wheelchair. He was the only on besides me who didn't have an IV. In front of us, there was a man in his early 50s hooked up to a chemo IV. He was very thin and pale and alone. He seemed so sad. To his left, was a woman in her 50s with a catheter bag - also with a chemo IV. Her hair was short, but seemed to be thinning. She was talking to a friend or relative, and seemed to be feeling ok at the moment. 

But it was the table to the right of us that really got to me.

Two women, who appeared to be about my age, walked out to join their family members at the table. They were both connected to chemo IVs, and they were both wearing blue, medical masks over their mouths and noses. When they got outside, they were able to take the masks off. "How's the pneumonia?" I head someone ask one of the women. She just shrugged and tried to smile. She was very pale, and obviously wearing a wig. She had a mediport sticking out of her chest and her eyes were unhappy. The other woman seemed a bit better. She was very chatty, and I didn't see a mediport, just an IV. Her hair was pulled back into a ponytail, and I could see that she wore it that way to cover the bald spots. I turned to Jimmi, "I need to go now. I can't be here anymore." He looked confused, but helped me up without any questions, and we headed back upstairs.

When I got to my room, I had to go to the bathroom. As I was sitting there, doing what you do in the bathroom, I looked into the toilet and saw bright red blood. Oh no. What's happening now? I had been spotting on and off from the surgery. Then there was the weird discharge from the UTI that apparently I didn't actually have. Now this. I left the mess in the toilet and called the nurse. I explained what had happened and we both went into the bathroom to have a look. She said, "Hmmm...Is it close to your time of the month?" My jaw dropped. Is she kidding? "Well," I said calmly, "since I don't have a uterus anymore, no, probably not." She looked at me and shook her head. "Oh! That's right. I forgot. Ok, let me go page the doctor." Are you kidding me, lady? Read my fucking chart before you talk to me so you don't make a stupid comment like that! UGH!!!

The doctor came in a few minutes later and checked the toilet. "It's normal," she said. "You're going to have spotting and bleeding for 6 to 8 weeks after your surgery. It will be more or less depending on your activity level, but as long as it's not an actual flow, you don't need to worry." 

Relieved, Jimmi and I sat down to watch "Borat", which we had rented from the hospital. Halfway through, our friend, Mike, who we hadn't seen in a year, came to visit. My parents followed shortly, and we all moved to the lounge. Everyone was talking and laughing and having fun, when all of a sudden, I started to sweat. My stomach started to gurgle and the pain began. Oh no! The stool softener and laxative regimen they put me on is working...right now! Oh, how embarrassing. Maybe I can just hold off for a few more minutes until Mike leaves for work. Ok, maybe not. "I hate to be rude, but the medicines they're giving me to make me go are working. I need to go." Mike hugged me goodbye and off I went in a cloud of humiliation...or maybe that was gas.

When I had finished, Mike was gone and Jimmi came in to check on me. The nurse also came to check my vitals. My temperature was still ok, which was good. Then she asked me if I had had any more bleeding. I told her I had, and asked her if it was normal if there was a small clot in it. "Yes, a small one is ok. If there's a large clot, that's not good." Then she went on for a bit about bleeding and clots, then turned to Jimmi and said, "I'm sorry to talk about this in front of you. These are problems women have. Men have some problems and women have others. But it's the only way women can make babies." 

Holy shit. Are you kidding me? She did NOT just say that!

This was the same nurse that asked me if I was close to getting my period. Now she's talking about making babies? Yeah, lady, I can't do that anymore either. What is WRONG with this woman? I couldn't wait until 7:00 when the nurses changed shifts. Stupid bitch.

My parents, Jimmi and I decided to order dinner from outside the hospital that night. We ate in the lounge and talked like we were dining at a restaurant. When we had finished, my friend, Ben, showed up to visit. After about an hour, I felt the same sweating and gurgling I'd felt when Mike was there earlier. Not again! Why does this only happen when I have company? I tried to wait, but once again, to no avail. I excused myself the same way I had earlier and left the room.

As I came out of the bathroom, the night nurse, Shelley was coming into my room. "There you are!" She said. "I was looking for you. I need to take your vitals." Shelley was a very pretty, young nurse with adorable pink eye shadow. She smiled when she spoke and she was upbeat and cheery. Such an improvement from the day nurse with diarrhea of the mouth. "Your vitals are perfect! If you need anything, let me know." I went back out to the lounge to finish my visit with Ben. 

At about 9:00, he and my parents all left for the night and Jimmi and I went back to my room. We got comfortable and watched "The Rocker" until about 11:00 pm. Shelley came in to check my vitals again and then said, "See you at 2!" I smiled, "I'll probably still be awake. I'm gonna try to write tonight." She looked interested, "Are you a writer?" she asked. "Well, I..." Jimmi interrupted me, "Yes, she is!" he said. I explained, "I'm writing a blog about my situation. It's a bit more complicated than just cancer. We're also getting married in two months." Shelley's eyes lit up. "Really? I love weddings!" 'Yeah," I said. "I hope I can even get married while I'm going through chemo." Her face fell. "Everyone is different with how they handle it, but attitude helps. Think positive." "I'm trying," I told her. "Hey, at least I won't need the wedding dress diet!" Jimmi made a disapproving face at my bad joke, but Shelley laughed. "You need to keep your sense of humor," she said. We spoke for a few more minutes and then I gave her my blog address. "I'm gonna go read it now. There are only three patients on the floor tonight, so we're not very busy."

It was nice of her to say, but I didn't really think Shelley would bother to read my blog. She doesn't know me. Why would she care? I finished a short update, and closed the computer. It was 1:40, so I figured I'd just watch TV and wait up for my next vitals check. At exactly 2:00, Shelley came into the room. "I was reading your blog out there. You're a great writer!" she said. "Oh, thanks. You like it?" "I really do! The other nurse keeps asking me what I'm reading because one minute I'm laughing and the next minute I'm crying. It's crazy! My favorite entry is the one about Jimmi. That made me laugh so hard!" She turned to Jimmi, who was turning red because now the nurse knew about his sperm bank experience, and said "I didn't know you were a drummer. That's really cool!" Then she looked at me and said with sincerity, "It's really great that you're doing this. It's also good for me to read, because sometimes we forget that patients have lives outside of the hospital. It makes me remember that people have a lot of other things going on other than just this." 

When Shelley left the room, I felt amazing. Not just physically, but mentally, too. It's one thing to be complimented by family and friends, but when it comes from a complete stranger, who is under no obligation to even read my blog, let alone compliment me, it takes on an entirely different meaning. I fell asleep with a smile on my face.

At 6:00 am, Shelley was back for another round of vitals. She said, "So, I've been reading all night. I can't believe you have six boys and six girls frozen! That's so awesome! I'm gonna keep following you, so keep writing." And that was the last I saw of her during my stay.

When 7:00 rolled around, the day nurse came in to introduce herself. "Hi, I'm Caroline (Carolyn?), and I'll be your nurse. Shelley told me you're getting married. That's great!" Wow, I really like Shelley. She made up for that other nurse 50 times over. But Caroline/Carolyn seemed very sweet, too. "Let me know if you need anything!"

I was startled awake by the doctor at 10:10 am. Wow, I can't believe I fell back to sleep for three hours. "Well, Suzanne, everything looks ok. We're going to send you home. Call us if the fever comes back or if you have any other problems. And make sure you follow up with doctor Leitao on Friday." 

Yes! I'm going home!

Jimmi and I packed up our stuff and waited for my prescription to be filled, then we wished everyone a happy 4th of July and got the Hell out of the hospital. For the first time in weeks, I sat in the car comfortably, without pain. There was a bit of traffic, but we made it home in a little over an hour. I walked in the door, hugged my dog and my cats, and immediately hit the shower. As I was drying my hair, Jimmi came up to check on me. "I made the reservation for 6:45," he said. "Is that ok?" "Perfect." I confirmed. I put on make-up and got dressed in normal clothes that were actually feeling a bit loose. After a stop at me ex-husband's house to visit my kids and reassure them that Mommy was ok...

Jimmi and I finally had our date night.

The Never Ending Week Continues...

When we left off last post, it was Tuesday night, June 28th, and my parents had just gotten to my room in the Urgent Care department at Sloan-Kettering in New York City. I had come in because of excruciating lower back pains and I was just awaiting my CT scan to check for possible ureter issues. And now, my story continues...

Just then, medical transport came to take me away to my CT scan. My parents stayed in my room and Jimmi escorted me upstairs. As I waited on a bed in the hall, a nurse appeared, "Suzanne? I just need to check your IV quickly before we start your test. She took a syringe of saline out of her pocket and lifted my arm to get to the IV connection. As she did so, her eye caught the diamonds sparkling on my left hand. "Oh, my God! Your ring is gorgeous!" she exclaimed. Then she looked at Jimmi with approval and he said with total seriousness, "Wasn't me!" The poor nurse's jaw dropped and her face froze with embarrassment. I smacked Jimmi playfully on the arm and he laughed. "He's kidding," I giggled. "Oh, ok. You scared me!" She was relieved, "So, when are you getting married?" My smile turned to sadness as I said, "September 3rd. And I start chemo and radiation on July 18th." I saw the nurse's face cringe with sympathy. "Oh no," she frowned. "Any chance you can change the date of the wedding?" I knew she meant well, but I wished people would stop asking me that. "Yes, probably, but I don't want to. I've been planning for a year." She gave a reassuring smile, "You'll be ok. Don't worry."

A few minutes later, the radiology tech wheeled me into the CT scan room. The first thing I noticed, which was different than any of the other equipment in the scan rooms I'd seen before, was a metal hanger with two giant syringes hanging upside down on either end. Each syringe was filled with clear fluid and each had a thin, curly tube attached to the end of it. It looked like something you'd see in a mad scientist's library. 

The nurse from the hallway came back into the room to explain the test to me. "I know you've had CT scans before, but this one is a little bit different. We'll take a few pictures, then we'll give you an injection of contrast dye followed by and injection of saline to flush it through. This helps us really see the urinary tract to make sure everything is in place. After the injections, you'll need to wait about ten minutes on the table before we take the next set of pictures. The whole thing will last about 25 minutes, but it might be a lot of waiting."

Sounds easy enough.

The hard, cold metal slab I was lying on started to move me into the scanner. I closed my eyes and heard the familiar, recorded voice, "Breathe in. Hold your breath. (10 second pause) Breathe." I followed instructions three times and then the nurse came back in. "We're gonna give you the injections now." She hooked up the first of the giant syringe tubes to my IV and I watched as the black plunger was automatically pushed and the fluid entered my bloodstream. I immediately felt warm all over. All of a sudden, it was hard to breathe. Oh, my God! My I'm having a reaction to the dye! My throat is closing up! My heart started racing and my eyes got wide, but before I could call for help, the feeling went away. 

Holy crap, that was scary.

"Ok, we're injecting the saline now." I turned and watched as the other syringe squeezed its contents into my body and I suddenly had an urgent need to go to the bathroom. Damn urinary tract infection! "Ok, now you just have to wait ten minutes. You can move your arms and your head and your feet, but don't move your butt. We need you in the exact same position for the next set of pictures."

Ugh!!

Have you ever had to pee so badly that it physically hurt? Now try to add being forced to lie still on your back on a hard piece of metal, a urinary tract infection and severe lower back pain to the mix. Needless to say, it wasn't my most comfortable ten minutes. But, finally I made it through and the test was completed. I was wheeled back out to meet Jimmi, and then back to my cubicle in the ER where my parents were waiting and I could finally get up and go to the bathroom.

As I was washing my hands, I looked into the mirror in the bathroom and immediately noticed a red blotch on my chest. "What's that?" I said out loud. I pulled down my hospital gown to check it out. It was bright red and about the size of a Saltine cracker. Wonder where that came from? Maybe I really was having a reaction to the dye. 

I went back to my bed and showed my mom. Immediately, my head started pounding and I had to call a nurse to give me something to take it away. Weird. That headache came out of nowhere. Since my back was acting up again, on top of everything else, I skipped the Tylenol and went right for a Vicodin. In ten minutes I'd be in another world and at least the edge would be taken off the pain. I turned on my side and my mom started rubbing the spot on my back that was giving me trouble. "Does it feel better when I rub it?" she asked. "Yes, which is strange since it's internal." My mom gave a look that told me she wasn't convinced. "I don't know," she said. "Maybe you hurt yourself and you didn't realize it." Then she looked at my dad and said, "It seems a little like your sacawilliac, doesn't it?" What did she say? Was I stoned from the medicine already? I started to laugh, "You mean sciatica?" She looked at me and asked, "Oh, is that what it's called?" My mom and I stared to giggle uncontrollably until I could speak again, "I think you were confusing Sacagawea and Celiac to make sacawilliac!" 

Finally, Dr. Long came back to my room. This time, she was dressed in street clothes and carrying a purse. "Are you leaving for the night?" I asked. "Yes, but I wanted to come and give you your results first, like I promised." I love people who keep their word. "So, the scan looked totally normal. No leaks and everything is connected where it should be. The only thing we saw was a small pocket of fluid by the left ureter which might be putting some pressure on the tube. That could be causing the pain." Oh no! What is it? Is it serious? "What kind of fluid?" I slurred in my Vicodin haze. "Well, it could be post-surgical fluid or maybe lymphatic fluid from when we removed the lymph nodes and everything started to drain. It's very small and there's nothing we would really do about it at this point. It should just go away on its own. I'm going to release you. Please call us if anything changes, if the pain gets worse, if you start vomiting or if you have a fever. But this is really the best case scenario with the symptoms you have."

We thanked her and she went home. I waited for the nurse to remove my IV, then my parents, Jimmi and I also left the hospital. I was still in a lot of pain, more than I should have been only 45 minutes after taking Vicodin, but what else could I do? The doctor had just looked inside my body and found nothing concerning. I guess I'd just need to relax and wait it out until the hurting stopped.

Too bad it wasn't that easy...

A Long Update That Will Be Continued...

I'm posting this blog now because I've had so many people asking where I've been lately. The truth is, I haven't been feeling well at all this week, and as many times as I've tried to write my blog, I just couldn't do it. Here is the first part of the long and winding road I've been on this week. I'll continue to write as soon as I can...

I thought I wouldn't have much to write about this week until Friday.

Silly me!

I woke up on Tuesday with an aching pain in the left side of my lower back. I shifted around and tried to find a comfortable position, but nothing helped to ease the discomfort I was feeling. Jimmi wasn't home, so I tried to rub the area myself and see if it made any difference. Strangely, it did, but only if I kept my hand on the questionable spot. Weird. It didn't feel like a muscle pain; it was definitely something inside. As the minutes passed, the throbbing got worse until it became unbearable. I knelt on the bed, bent over so my knees touched my chest, then I laid my head down and hugged my pillow for strength. 

"Oh, God, help me!! Why is this happening?" I cried out loud, though no one was there to hear me.

I didn't understand. Why do I keep having pain that seemingly has absolutely nothing to do with the surgery I had? My incisions weren't sore and I only had mild abdominal pain with a few shooters here and there. The worst part was the shoulder pain, and now this back pain has filled its place. I forced myself to breathe deeply and relax so I could fall back to sleep.

That didn't last long.

Maybe a shower will help? The warm water eased the agony for a little while. I got dressed in real clothes (instead of sweats and a t-shirt) for the first time since the surgery, and I even put on a little bit of makeup. After all, Jimmi and I were going to have a date night! But first, I suggested his and hers pedicures. I know, not a very manly activity for Jimmi, but since I still wasn't allowed to drive myself, he had to go with me anyway.

I needed to have my legs and feet rubbed so badly. It always relaxes me and makes me forget about everything else in my life. I sat in the oversized massage chair with the tub of warm water at my feet, leaned back and...

Oh, my God, I'm in so much pain.

My back started acting up again. I tried to aim the massagers in the chair to hit the area that was hurting, but it didn't help. I kept shifting around in my seat, trying to find any position I could stand, but it wasn't working. I guess one of the technicians noticed the uncomfortable look on my face, and the way I just couldn't sit still, so she offered me a pillow for my back.

It didn't help.

I texted Jimmi, who was two chairs away, and said, "I just want to go home." He looked at me with concern all over his face and said, "Let's go." But I thought I could make it through. That was before I realized that my nail tech was literally working on two speeds. Slow and stop. Normally, that wouldn't have bothered me, but today, it was like torture. With each rub of my foot, I'd cringe in pain. I was literally holding back tears and counting the minutes until I could go home and take a Vicodin. I actually wanted the medicine. I needed it.

When the torment was finally over, the technician walked me to the drying bay. "No," I said, "I just need to go home." Jimmi held the door as I walked out into the parking lot with my very wet, very pink toenails. "Oh my God, it hurts!" I screamed. "Ok, we'll get you some medicine," Jimmi reassured me. The ride home was agony. I felt like an addict who just needed a fix. We pulled into the driveway and I was out of the car before Jimmi even put it in park. I stumbled into the house, grabbed whatever bottle of liquid I could find in the fridge, popped open the Vicodin and swallowed it down. I walked, hunched over, to the couch and plopped myself down.

"Can you make the reservation later?" I called to Jimmi. For the second night in a row, we were supposed to have "date night". We had to cancel on Monday because I wasn't feeling well, but I was determined to get to The Melting Pot that night, even if I had to go there stoned. Yes, I knew that my eating habits had changed; I couldn't eat more than a few bites without feeling full and needing to stop. But I wanted to go out!

"Are you sure I shouldn't just cancel it?" Jimmi asked. "No! I want to go!" I insisted.

Ten minutes later, I was loopy and spacey, but the pain still hadn't subsided. "Ok, cancel it." I said sadly. It was almost 7:00 and I was starving, but it hurt too much to leave my couch. I picked up the phone and dialed the answering service at Sloan-Kettering. I listened to the pre-recorded voice giving me instructions over the phone. "This is an emergency, right?" I asked Jimmi. I hate bothering doctors after hours. I don't want to be one of those annoying patients who complains about everything. He nodded and I continued to hold for an operator.

"Hi, I'm one of Dr. Leitao's patients," I explained when she answered. "I'm having severe lower back pain and I'm not sure if it's from my surgery two weeks ago, or the urinary tract infection I have now." She took my name and phone number and assured me that the doctor would call me back in a few minutes. In the meantime, Jimmi heated up some leftover ziti my aunt had made for us and I forced myself to eat a few forkfuls, since it was the only thing I had been able to get down all day.

The phone rang. "Hi Suzanne, it's Dr. Long, one of Dr. Leitao's fellows. I was the one who woke you up every morning in the hospital." I remembered her. Young and pretty and sweet as could be. "I hear you're not doing too well. Tell me what's going on."

"Well, I have a UTI and the lower left side of my back is killing me. I took Vicodin a little while ago, and it took the edge off, but I can still feel it. I don't know if this is normal or not with a UTI."

"Are you having any leaking of fluid or discharge?"

I thought back to the start of the peeing in my pants episode the day before. I thought it had stopped that night, but I woke up Tuesday morning very unpleasantly. I'd been wearing a mini-pad all day to catch the leaks.

"Yes, I am."

"Is it clear fluid or blood?"

"Both. It's weird. It just started yesterday and the surgery was two weeks ago."

"How far do you live from the hospital again?" Then I got nervous.

"Any hospital or Sloan-Kettering in the city?" Of course she meant Sloan. "About an hour, depending on traffic."

"Ok, I think you should come in and get checked out by one of us. I'm on call tonight, so I'll be here when you get here."

"You need me to come now?" I looked at the clock on the oven and saw the bright, green numbers: 7:45 PM. I was so tired already. "Is it possible to wait until tomorrow or do you need me to come tonight?"

"Let me talk to Dr. Leitao and I'll call you back."

I called my mom while I was waiting for Dr. Long to get an answer. I hate worrying my mom. I know that every time I call her, no matter what the reason, her heart drops when she sees the caller ID. She immediately has to wonder if something's wrong, and this time, there was. I explained the situation and she was very calm. She told me to let her know what was happening and she and my dad would meet us in the city whenever we needed to go. "You don't have to come. Jimmi can handle it." I said because I didn't want to ruin her plans. She dismissed me quickly, "We'll be there."

Dr. Long called back soon after. "Hi Suzanne, Dr. Leitao would rather have you come sooner than later, if possible. He really wants you to have a CT Scan on your urinary tract. Lower back pain isn't really a common symptom of a UTI, and with the leaking and everything, and especially since it's only on one side, he really wants to make sure something didn't go wrong with the left ureter during the surgery." I didn't like how this was sounding.

"What does that mean?" I asked, terrified to even hear the answer.

"Well, we had to move the bladder around a lot during the surgery. The ureters are the tubes that connect the kidneys to the bladder. It's possible that with all the movement, one of the tubes was damaged and is leaking urine. Because you said you've been having some leakage, we really need to check it out."

Seriously? I don't need this right now. I just want to have date night! "Ok, we'll be there as soon as we can."

I hung up the phone, called my mom back and let her know what was happening, then Jimmi and I got in the car and started our trip into the city. "I don't want to do this," I whined. "If there's something wrong with the tube, they're gonna have to open me back up to fix it! I don't want them to do it! I don't want another operation!" Jimmi looked at me then turned back to the road. I could see the worry in his eyes. "Is that what they'll have to do?" he asked carefully. "Well how else would they fix something that's inside of me?" I snapped.

We made it to New York in 38 minutes. Apparently no one was rushing to the city at 8:30 on a Tuesday night, which made it an easy ride. We arrived at Sloan-Kettering and found the door marked "Urgent Care". I hobbled over to the desk, "Hi, Dr. Long said I should come in for a CT scan." The receptionist took my name and asked me to take a seat. Barely five minutes later, a nurse named Dan called me in to take my vitals and ask for the story of how I was lucky enough to end up in the emergency room that night. I gave him the information he needed, then I was bounced back to the waiting area to wait for another nurse to take blood and start an IV.

"Susan?" UGH!!! "Suzanne!" I said with the strongest tone I could before actual nastiness. I followed the nurse into an exam room and she asked, "Which arm can I not use?" Weird question. "You can use either one, but I only have one vein right in the middle of my right arm." She looked me over and said, "Let me show you a trick." Then she had me twist my arm around so the palm of my hand was facing upward, and she started tapping on my inner forearm. "You look like you work out, so we should find some beautiful veins," she complimented. "And there's one now! Oh, why are you here tonight?" Strange time to ask me that, I thought. "I'm having lower back pain and..." "Ok," she cut me off, "then you'll probably need a CT scan so I'll give you a larger gage needle for the contrast dye, that way they won't have to stick you again." Wow. Smart lady. "Yes, they are doing a CT scan," I said. She smiled and nodded knowingly. "Ok, a little pinch..."

"OUCH!" Ok, note to self: No tattoos on the inner forearm. That HURT! But it was over quickly and the IV was in. She took a few vials of blood and left the catheter in my arm for later use in the scan, or worse, in case I needed to be admitted. Then she flushed the IV with saline to clean it out. All of a sudden I smelled and tasted something weird. "Whoa! I think I just tasted that." I said. "Yeah, you can taste the saline when it goes through. Some people even smell it," she confirmed.

I was sent back to the waiting room for the third time in 20 minutes, but not for long. A red-headed nurse called my name and off we went. She took us to our curtained-off cubicle and instructed me to just remove my shirt and put on the gown. A doctor I had never seen before entered the room. "Hi, I'm Dr. Johnson. What's going on tonight?" I should've written it all out on notecards so I didn't have to repeat myself 400 times. After explaining my symptoms, he examined my belly, pressed down on my abdomen and tapped on my back. "Anything hurt?" he asked. I shook my head. He listened to my chest and back, asked a few more questions, then told me what the problem might be. Again, I heard about ureters and damage and leakage. "If that's what it is, how will they fix it?" I held my breath waiting for his response. "Well, worst case scenario, if the tube is disconnected or really damaged, a urologist will go in through the urethra and reattach it." Sounded horrible. But, wait, "Is that another surgery?" I questioned. "It's a procedure," he explained. "You won't need to be opened up again."

I could breathe again.

Dr. Johnson left the room after the exam and as he pulled the curtain aside, I saw a woman, probably in her early 50s, being wheeled into the next cubicle. As soon as she got close enough, I could hear the complaints start to spew, "Where are we going? What room are we going to? Oh, number 13? Oh, that's just great. Number 13. You've gotta be kidding me! I want to watch channel 4 but it's not channel 4 here, it's different!" Her husband, who I had already sainted, apparently turned on the TV to channel 4. No sooner had he answered her wish when she started again, "No! It's not channel 4 here! You don't ever listen to me! This is the BET Awards! BET is cable, I don't want cable! I want channel 4!" Well, whatever he turned on was so loud, it could be heard through the entire wing. I looked at Jimmi, "Are you kidding me? I don't ever want to hear you complain about me being high maintenance again!" I joked.

And she didn't stop!

An unsuspecting nurse walked into the devil woman's room and was quickly attacked by her claws, "What number is channel 4? I need to watch channel 4!" He backed out slowly saying, "Ok, ma'am, ok. I'm gonna go get the guide. I'm getting the guide." He barely escaped with his life as he walked by my room shaking his head and letting out a "Whew!" But the drama next door continued. "Oh, great!" she yelled at her husband. "Now you spilled it all over the floor! I told you not to bring it in here! It's all over the floor and the table!" He finally fought back with one ounce of strength, "Screw the floor! It's all over my pants!" The TV blared and the complaining escalated. "Are they gonna bring us a menu or anything? I'm starving!" 

I swear this woman thought she was in a TV lounge/restaurant instead of a hospital! Dr. Long arrived shortly thereafter to save me from the horrors next door. She gave me a warm smile, "Hey. How are you holding up?" I really like her. "Eh. I'm ok, I guess. No offense, but I'd rather not be here." "I know," she comforted, "but because of all the stress your bladder and the ureters have to go through during the surgery, Dr. Leitao really wanted to make sure everything is ok. There's a chance the pain might be from the UTI, but there's also a chance it's much more serious than that and we can't let it go." I nodded. Dr. Long proceeded to repeat the exam Dr. Johnson had done, then she asked me about the discharge and leaking I was experiencing. "Is it a lot?" "It's enough to wear a panty liner," I explained. "Are you wearing one now?" Her eyes were wide. I nodded. "Can I see what it looks like?" Eeewwww! This is reason number 7,898,999 I never became a doctor. She wants to look at the stuff that's coming out of me onto the pad! "Sure." I pulled down my pants as Jimmi quickly averted his eyes. She glanced at the brown-tinted, clear nastiness I'd collected and said, "Ok." I pulled my pants back up, Jimmi turned back to look at us, and Dr. Long continued, "I've already ordered the CT scan. It's a special kind that focuses on the urinary tract. It will tell us exactly what's going on and then we can figure out how to fix it. If you want me to personally deliver the results, I'd be happy to do that. And if I've already left the hospital, I'll call you with them." She's awesome. "Yes, I'd appreciate that," I said with complete trust.

Dr. Long left the room and Alex, a nurse with a curly, black ponytail and a tattoo on his neck walked in. "Hello!" he said cheerily. Before he could continue, the maniac next door started yelling about something else. Alex smiled and shook his head. "I know that voice," he said with a chuckle. "She's a regular, huh?" Jimmi teased. We all tried hard to block out the queen of complaints as Alex asked me a bunch of questions. Then he gave me a sterile cup and a piece of gauze dampened with Betadine and instructed me to "wipe first, front to back, with this. The pee a little into the toilet and finish in the cup."

I got up and walked down the hall to the bathroom. Two Hasidic Jews in full garb strolled by me on my way, and I heard the family of a patient in another cubicle laugh and say, "Look, they're taking over! I think they're going to get a third!" I tried to hide the shock on my face as I entered the bathroom and followed Alex's instructions. 

When I came out, I looked up at the front desk and saw my mom and dad. I waved them over and we all met at my curtain. They both kissed me, then my dad immediately went into story time with his new best friend, Jimmi. My mom and I looked at each other and shook our heads. As happy as their new relationship makes me fell, I still can't get used to it.

There is plenty more to my story this week, but I need to stop now. Hopefully I'll feel well enough to finish later today.

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."

No.
No.
No.
No.
No.

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.

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.

Constipation.

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.