Ok, I've been slacking.
I didn't want to ruin the high I was feeling on Sunday by writing that the reality of my cancer hit me in the face, full force, on Monday. But I guess if I don't post about this soon, it'll just build up into a hoard in my head, and I'll never be able to get it all out.
So, here it goes...
I really didn't sleep much on Sunday night. We got home from the Motley Crue concert at 1:00 am, and I had to take a shower to wash the bucket of fake blood out of my hair. I'm pretty sure I fell asleep around 2:30 or 3:00, but I could only sleep for a few hours. I kept waking up.
Damn nerves.
I knew I wasn't starting radiation and chemo until Tuesday, but I needed to go for my final radiation setup and chemo consult on on Monday.
The radiation setup was easy, but long. A tech named Bob came to get me and walk me through the process. "The first thing you'll do is check in at the desk," he explained. "After that, you don't need to wait for anyone to come get you, just walk right to the women's changing room, take everything off except your shoes, and wrap yourself in one or two of the gowns provided. There are lockers for your belongings. After you've done that, have a seat in the changing room waiting area and Kerry, Janice or I will come get you." He left me in the changing room to do as I was told. Even though I wasn't having the treatment that day, I needed a full dress - or undress - rehearsal to make sure the tattoos were lined up with the mold they made and the x-rays from two weeks ago matched the way my body lies on the table each time I'm there.
I got undressed, put one gown on with the opening in the back, and another gown on with the opening in the front. I wouldn't want to walk down the hall with my ass hanging out, as sexy as that might be. I sat in the waiting room and heard another tech give another patient the same spiel I had just heard. A few minutes later, the other woman came out and joined me in the waiting room. She was older than I am; probably in her early 50s. She looked healthy enough, except that her hair was down to a few strands all around her head, and she had on a studded hat to cover it up. I smiled at her and said, "Your name is Suzanne too. I heard you checking in. Don't you hate when people call you Susan?" She immediately made a face that told me she knew exactly what I was talking about. "I can't stand it!" she said. With the ice broken, I asked her if this was her first time doing radiation. She explained that it was, but she had already had four rounds of chemo, which had shrunken her tumor considerably. But because they weren't able to do surgery on her, the doctors decided to add radiation to her plan. I asked her what chemo regimen she was on. "Cisplatin," she said. My heart sank. That's the one the nurse insisted would only make my hair thin out. Obviously not true. Oh well.
Suzanne and I spoke for a few moments until Kerry, Bob's partner, came back for me. "I'm sure I'll see you around," I smiled. And I followed Kerry through the door into a very white area with 3 stations in front of three radiation machines. "We'll be on machine number 3," Kerry explained. She showed me the way and I tried not to think about what this treatment might do to me.
I walked into the room and Kerry pointed to a TV screen. "Every day, we'll ask you to verify that the picture on the screen is you." I looked up at the photo. "Is that you?" I stared at the long, shiny hair draped over my shoulders and down my chest. "Yeah, for a little while longer, I guess." Kerry made a sympathetic face, confirmed my date of birth and instructed, "Ok, why don't you take off the outer robe and your shoes. Sit down on the table, then lie back onto the pillow and don't move. Bob and I will move you where we need to you be. Try not to help us, I know it will be hard." Then Bob asked, "What kind of music do you like? We can put on a CD for you when you're here. We have a huge variety." My mind was blank. For obvious reasons, the only name I could think of was Sebastian Bach. I wanted it to be Sunday again. I wanted to be back at my bridal shower having my own personal concert again. But no. I was at Sloan-Kettering, where I'll be just about every day for the next three months. I spoke, "I dunno. I like 80s rock." Bob made a few suggestions and I shook my head and turned up my nose. Finally I agreed to let him play Billy Joel because it was the least repulsive choice he had given me. But I can't really lie. I'm a closet Billy Joel fan.
I heard the sound of glass shattering and a car screeching away and recognized it as the beginning of "Big Shot." I sang along in my head as Bob and Kerry moved my body into the exact position they wanted it. Then Kerry said, "We're gonna put the mold on you now. It's gonna be a little bit cold, but try not to move." They placed the white, hard plastic on my body and quickly locked it into place. A little bit cold?? It felt like they had just dumped ice cubes all over my body. How did they expect me not to move when my entire body started shivering uncontrollably?
But it warmed up pretty quickly, and they went to work lining up the tattoos with the mold and then making sure they were at the center of the red laser exes shining down on my body. I heard them say things like, "I'm a little anterior. I'm posterior." Then they'd move me around some more. The placement took about 15 minutes to complete. Then Bob left the room and Kerry explained that they'd be out at the desk looking at my x-rays and lining the machine up so everything is perfect. They might come in a few times to change something on the machine, but during the actual treatment, they wouldn't be in the room at all. She told me they would be able to see and hear me, so if I had a problem I could just call them. She left with a final warning, "Try not to move at all. Even the slightest wiggle of your toes might throw off the rays." Then she was off.
I was alone in the room. Well, I had Billy Joel to keep me company, but he wasn't much comfort at the moment. I looked up at the machine, looked around the room, and tried not to move. The entire room was white, with the exception of some thin, rectangular lights in the ceiling with leaves painted on them to make it seem like I was looking up at the trees. The machine slowly started to move around my body, and my eyes started to sting.
I don't want to do this! I though to myself. I was so angry. Why is this happening? I have to do it for my kids. But why do I have to have any of this happen at all? Ok, just accept it. It's happening. Deal with it.
I managed to keep the tears from flowing, which was a good thing because Kerry walked in at that exact moment to adjust something. "Today will be a little longer than any other time you're here. We just need to make sure everything is set up exactly right today." I nodded and she was gone again.
The machine moved around my body again. "Bottle of red, bottle of white..." Billy sang as I stared at the fake tree. This sucks. I was totally aware of the fact that I wasn't allowed to move at all, but somehow, that knowledge made it impossible to stay still. My left leg started moving without my permission. It was almost like a spasm. I forced my brain to make it stop, and finally it gave in and agreed. 20 minutes later, I was being unhooked from the table, and walking back to the changing room to get dressed.
I met my mom and Jimmi in the waiting room when I was finished. "Ok, let's go upstairs," I said without much emotion. "How was it?" Jimmi asked. I just shrugged and started walking.
My appointment with Dr. Gorsky, the medical oncologist (chemo doctor) was scheduled for 2:40 pm. We were a few minutes early, and I was given the usual paperwork to fill out. The last question is a picture of a thermometer with 1 being the lowest and 10 being the highest. Underneath the picture, a caption reads, "Mark your level of anxiety right now." Not wanting to be a baby and draw my line at 10, I marked it as 9.
Nikki, a familiar nurse, called me in to take my vitals and 4 vials of blood as a baseline for the beginning of my treatment. When she was done, Jimmi, my mom and I were immediately taken into an exam room where a nurse asked a few routine questions, then told us the doctor would be with us soon.
Dr. Gorsky arrived just a few minutes later. "So, how are you?" she asked with concern. "You look much better than when I saw you last." I nodded, "Yeah, I ended up in the hospital that day. I feel much better now." Then we got down to business. "So, you start treatments tomorrow. What questions do you have?" I asked everything I could think to ask, but, honestly, the only question I really remember was, "Is there anything I shouldn't eat?" She looked at me and said, "Eat anything you can tolerate. Small meals will be better. And if you can't find anything, just try to get in some high calorie foods with nutrients. Milkshakes are good. And looking at you, you can afford it." Ok, I can handle milkshakes...I think. After about 30 minutes, I had nothing left to say. Dr Gorsky closed with, "Good luck to us all." And we finally left Sloan-Kettering for the day.
But Tuesday morning crept up too soon. I had to be up early to get to my 9:10 am radiation appointment followed by my 10:00 am chemo treatment. I dragged myself out of bed with a whimper. I was so scared and felt so helpless. There was no way out of this. It's the loop of my roller coaster and I'd better make sure I'm strapped in and holding on tightly.
I arrived at that radiation oncology desk and checked in. I kissed Jimmi and my mom goodbye and headed to the changing area, as I was told the day before. After I'd donned my double robes, Bob came to get me for the real deal. This was it. No turning back. I walked by Kerry at the desk and followed Bob to the radiation machine. He stuck the Billy Joel CD back into the player, apologizing because he had forgotten to bring Aerosmith's Greatest Hits for me as he'd promised. I repeated the same steps as I had on Monday. Bob and Kerry strapped on the freezing cold mold and moved me around like a rag doll to line my tattoos up with the laser lights shining down on me. Then they left the room.
It was show time.
I held myself as still as I could and waited for it to be over. The machine moved around me and stopped. At each radiation zone, I would hear a buzzing noise. I didn't feel anything at all. Of course, I knew I wouldn't. Radiation is cumulative, so I won't start having any side effects from it for about 10 days. In about five minutes, the whole thing was done and my mold was unhooked. Bob and Kerry wished me luck with the chemo and said they'd see me tomorrow.
After I changed back into my clothes, I went out to collect my posse. Jimmi and my mom looked a bit nervous and asked how it went. "Fine. Let's go upstairs," I said. We checked in on the third floor, and sat down to wait my turn. I looked around at all the people waiting. Some had hair, some didn't. Some looked sick, some not too bad. But I was the youngest person there, by far. I couldn't control it any longer. The tears started running down my cheeks as if they were being chased by a dangerous predator. Jimmi was rubbing my back and my mom handed me a tissue.
I was terrified.
But a familiar face brought me out of my hysterics. It was Suzanne, who I'd met in the changing room the day before. "How are you?" she asked with concerned eyes. "Scared to death," I said honestly. "I understand completely. But you'll be ok." Just then, my name was called.
It was time.
I was escorted into a large room that looked like a floor in an office building, with cubicles all around. The only difference was that instead of computers, there were TVs, and instead of tall plants, there were IV hangers. And instead of a swivel chair, there was a recliner with table arms. I plopped into the recliner and my mom and Jimmi sat in the guest chairs. "Well, at least I have a window," I said.
A minute later, a nurse named Raymond came to see me. He explained that I'd be there for about six hours that day because I was going to get two bags of fluids, two anti-nausea drugs, one pre-drug that sits in my kidneys and bladder waiting to expel the toxins, and two different chemo drugs - cisplatin and etoposide. Sounded like a party to me!
Raymond went to work looking for a good vein in either of my arms. "Can you leave the catheter in my vein for the entire three days so I don't have to keep getting stuck for each treatment?" I asked. "Yes, we can definitely do that. We'll just have to cover it before you leave." Cool.
He decided to go for a nice juicy one right below my left wrist, but OUCH! He missed! "Oh, sorry I'm hurting you," Ray apologized. He shimmied and shifted the catheter around in my vein until, finally, he got in in. Glad I won't need to do that again this week.
"Ok, we're going to start with one bag of fluids first to get you hydrated. When you go to the bathroom, I need you to measure your urine in the collection hat I left in the bathroom with your initials on it. Then, when you come back, write down the time and the amount in CCs on this sheet of paper." Okie dokie. Got it.
Another nurse arrived shortly to give me drug instructions. "Each day of your treatment, you'll take 3 dexomethasone pills. They're a steroid. You'll also take one Emend to control the nausea. At home, you'll take the other two anti-nausea meds as needed. I listed which one to take for mild nausea and which to take for severe nausea. But don't wait! If you feel sick, take one of them immediately. Then, before bed, I want you to take a Lorazepam for anxiety. It will help you sleep and also control nausea. Got it?" I asked her to write it down, but she was way ahead of me and handed me a list of instructions.
Ok, this wasn't so bad. Hooked up to fluids, peeing every 10 minutes, writing it down. I can do this. Raymond came in to tell us there was a room with snacks and drinks around the corner and we were all welcome to take anything we wanted. I grabbed some Famous Amos chocolate chip cookies, and went back to my chair. About an hour later, Ray came in to give me my pre-meds. One bolus after another was attached to my IV. But still no chemo.
Jimmi took our lunch order and headed out to Panera. While he was gone, the time came. It was time for cisplatin. "Are you ready?" Ray asked. What a stupid question. "No. I don't want to." And the tears came quickly. Ray put his hand gently on my knee. "I know you don't want to. But you'll be fine. We're all here to help you." Then he draped himself in protective clothing and gloves, grabbed the bag of medicine and started to get it ready. "Why do you need to wear the protective gear?" I asked. "Well, we handle the drugs all day. It's not good for us. But you'll be ok because we're just putting into your body." How did that make sense? With that, he hooked up the bag, started the flow and said, "Here we go."
When he left my cubicle, I texted Jimmi, "They started the chemo." He answered, "It'll be ok, Pumpkin. It's gonna make you better. I'm on my way back." I turned to my mom and cried. "I don't want to do this. I'm scared." This time she wasn't strong enough to keep it together. For the first time, my mom shared my tears and we let it out together.
By the time Jimmi came back, we had composed ourselves. He handed me my macaroni and cheese, gave my mom her Greek salad, and took out his Asiago Roast Beef sandwich. I watched him as he ate. He didn't see me because he was too busy reading all of the bags that were dripping into my arm. And then I saw it happen. For the first time during this entire ordeal, Jimmi's eyes turned red and watery and his lip started to quiver. He didn't see that I saw him, but he quickly turned his head to the side and took some deep breaths. He had to try a few times, but he finally got himself together and I pretended I didn't see any of it. Wow. He really does care. He's scared too.
The rest of the day was just long and boring. I felt ok, for the most part until I heard a commotion in another cubicle. A patient had some sort of reaction to her chemo and the entire medical staff on the floor was there trying to revive her. Hearing that didn't really put my mind at ease, especially since they were coming to give me the second chemo drug any minute.
Raymond arrived with my etoposide. "What happened over there?" I couldn't help but ask. Ray leaned down the way an adult would when talking to a small child, "Well, she just had a reaction to the meds. But that's why we have emergency drugs in every room. She's ok now." Oh, yeah, now I feel much better. "I'm going to give you the etoposide now. It might make your blood pressure drop drastically, so let me know if you have any palpitations or pain in you chest or back." I'm just getting the warm fuzzies all over the place. He draped himself again, and started the next drug. "I'll be back in 15 minutes to check your pressure."
What a long day. I kept waiting to feel something, but I didn't. Just pure exhaustion. One of the other nurses explained that I probably wouldn't feel too badly until I'm done with the three day cycle and I'm not getting fluids anymore. Then I'll need to make sure I drink enough to wash out the poisons they were putting into my body. I've never been good with the whole eight glasses of water a day. Now they want me to drink 16! Ugh!
At 4:30, almost exactly six hours after it began, my treatment was over. The tube was unhooked, but the IV stayed in my arm to be used on Wednesday. Ray wrapped it up and told me to cover it with Seran Wrap when I take a shower, then wished me luck and said, "See you tomorrow!" And we were finally released into the sweltering heat outside.
I couldn't wait to hit the couch. I couldn't remember the last time I had been that tired. My mom went home to grab some of my things that I had left at her house on Sunday, then came back to my house. When she got here. Jimmi headed for the supermarket. I passed out on the couch for a little while, but couldn't sleep because of all the phone calls and texts I was getting from concerned friends and family. After a while, I canned the nap idea and just got up. Perfect timing because my kids called to see how I was doing.
"We made s'mores!" Dylan announced. "You did? I love s'mores!" Dylan sounded so excited, "If Dad says it's ok, can I make you one and bring it over?" I didn't think he would allow that, but I said, "I'd love that!" I spoke to Justin next, and when I was done, I asked, "Does Dad want to talk to me?" Justin quickly replied, "He's helping Dylan make your s'more and then we're coming over." Wow. Really? Cool!
They arrived a few minutes later, chocolatey, marshmallowy goodness in hand. I ate it immediately, trying to show them that I was perfectly fine. Justin seemed to buy it, but Dylan was another story. He was pacing around the kitchen and kept staring at me as if he were waiting for my hair to drop out onto the floor at any second. "D, are you ok?" I asked him. "I dunno. I'm like really nervous and I don't know why. My stomach is like tickling." Poor kid. I hate that I'm doing this to him. "Dylan, look at me. I'm fine! See?" Then Justin remembered something I had told him a week earlier, "Mom! Did you ask if we're allowed to color on your head after your hair falls out?" I had forgotten to ask. And I did tell the boys I would. I thought it might be a good way for them to have fun with the tragedy of hair loss. Let them color all over my head so it's not a sad thing for them, it's a new activity. I'd make sure to ask on Wednesday.
The boys stayed for about a half an hour, but then it was time for them to get ready for bed. I gave them hugs and kisses and waved goodbye. As soon as they were gone, I popped an anti-nausea pill and hit the couch. A few hours later, I drugged myself with the anti-anxiety meds and went to bed. I'd need to do this all over again in the morning...just not quite so early!
Today's radiation was a repeat of Tuesday's. The only difference is that today, I brought my own CD. A gift from Sebastian Bach; an advance copy of his new CD, "Kicking and Screaming", which is due out in September. I walked into the room, handed the disc to Bob and said, "No Billy Joel today!" The minute the music kicked in, I stopped thinking about the reason I was there. I was lost in Sebastian's voice, and the killer riffs and heavy drum beats. Before I knew it, the treatment was over I found myself wishing it had been longer so I could hear more of the CD. But, hey, I'll definitely bring it back tomorrow! And the next day, and the next day...
Upstairs to chemo we went. I was a little more relaxed this time since I knew what to expect. I was shown to a different cubicle, also with a window, and I took my position in the recliner. A female nurse was in charge this time. She checked my IV and had trouble getting a good blood return on it. "Hmmm...I might have to restick you." Oh shit. "Please don't!" She shifted the catheter and few times and finally got a return. Ok, I can do it today, but I'll definitely need to use another vein tomorrow." Ok, I guess that's better than nothing.
"So, today will be quick. One bag of fluids and just the Etoposide. You'll be here about two hours." Ok, not bad. She asked if I had any side effects from Tuesday's treatment. I explained how I felt and what I did about it. Then I remembered Justin, "Oh! When my hair falls out, can my kids draw on my head? I told them they could and they thought it would be really cool." She smiled, "As long as they use washable markers, it should be fine." Yes! They're gonna be so excited!
The fluids were started and I closed my eyes. I was completely wiped out. But the sound of my mom's voice woke me. She had just arrived after some appointments she had to keep in the morning. She stayed for a while, then seeing that I was tired and Jimmi had everything under control, she left to run some errands and let me sleep. The minute the nurse came back to hook up my etoposide, I was out cold.
By the time I woke up, the bag was empty and I was ready to go home. That was quick!
Again, I immediately hit the couch and tried to sleep. I think I got about an hour in before my cousin came over with literally the BEST home made lentil soup I've ever had! Then, a few minutes after she left, my friend, Jean, and her daughter, Ella, came by to bring me a CD of photos from my bridal shower. Jean is a professional photographer, and I made sure she brought her camera on Sunday! I couldn't wait to look at the shots, but I started feeling sick again and had to take a nap. I popped an anti-nausea pill and went to the couch again.
So far, I'm not feeling too bad. I am very nervous for the weekend, though. What will happen once I'm not being pumped with fluids? Will it be much worse than this? Will the medicines help? What about when the radiation side effects kick in? Then how will I feel?
My life, for the next few months, will be an unending list of what ifs? I hate that. I've lost control. It's out of my hands.
I just need to go with it.
With 4 months left to go until my dream wedding, I found out that I had cervical cancer. Assured it would be an easy fix, I kept the worrying to a minimum at first. But as tests started to come back with grim results, I am now left to do nothing but worry...and write.
Wednesday, July 20, 2011
Monday, July 18, 2011
The Mother of all Bridal Showers...and Then Some
I don't even know where to begin. Let me start by saying that yesterday was probably the best day I've ever had. I know, I know. I'm supposed to say the days my kids were born were the best, but in all honesty, the minute they were born and every minute after were amazing! But I could've done without labor and epidurals and episiotomies and stitches and 17 different people looking up my cooch every five minutes to check how dilated I was. So, that being said, yesterday was the best day I've ever had that I would choose to repeat, in full, over and over again.
Yes, I am aware that I should've posted about this last night, but it was so late when we got home, I just couldn't. And since I absolutely do NOT want to spoil this amazingly happy story about yesterday with the realities of today, I have decided to write two separate posts tonight. One will be about yesterday and one will be about today.
Ok, enough babbling! Get to the good stuff already!!
So...my bridal shower was yesterday. But it wasn't a typical shower. Bridal Bingo anyone? Nope, not for me! After all the crap that's been thrown at me recently, my mom and my matron of honor, Jen, wanted to throw me a party no one would ever forget. A party that would put the smile back on my face; at least for a little while.
But what could they do??
After a lot of talking and throwing out ideas, I came up with something completely out of the ordinary for a bridal shower. Something that was totally in line with my personality and interests. Something no one would expect. But could it be done?
With less than two week to go before the date of the shower, the wheels were set in motion, and Jen was in the driver's seat. I can't even tell you how hard she worked to get the job done. She was relentless with phone calls and e-mails and follow-ups and more e-mails and more phone calls. She and my mom went back and forth every day discussing every minor detail that needed attention. Every day, we'd wait for more information. Every day we'd get more and more nervous that something was being overlooked. But once the contract was signed, just three days before the party, all we could do was wait for the day to come and hope everything turned out perfectly.
Finally, the day was here! I was so nervously excited, I didn't know what to do first. I checked my video camera to make sure it was charged. Then I changed the SD card on my regular camera and checked the charge on that one too. I took a shower, dried my hair, did my makeup. I threw on a super-cute, mint green minidress with white, platform stilettos. Then I packed a bag with snakeskin print leggings and a purposely ripped up and studded tank top, another pair of shoes, my makeup bag and a small, black wristlet. Why did I need the bag? Oh, right. Did I mention that after my shower, Jimmi and I had tickets for the Motley Crue/Posion show? I certainly couldn't go to a concert dressed in bridal shower garb!
Jimmi left the house about 45 minutes before Jen and I did. He needed to get to my parents' house, where the shower was being held, to help set up for the main event. Jen and I waited for my friend, Beth, to get here, then we headed off to the party. I'll admit it. It was really hard to keep my mouth shut about the surprise, so I blabbed to a few people. Beth was one of them. But I think I only told five out of 45 people. Not too bad for me!
We arrived at my parents' house at 11:40, 20 minutes before the party started. That gave us enough time to head to the stable on the property that isn't used for horses, but for outdoor parties instead. When we pulled up, Jimmi was outside. "Is Justin here?" I asked about our friend who was coming from Brooklyn to run sound for the day. "Not yet, but he's close," Jimmi assured me. "Is anyone else here?" Jimmi knew what I meant. "No, not yet," he said. Discouraged, Jen and I drove up to the actual house so I'd be there when the guests arrived.
At 12:00 sharp, the ladies started to arrive. I was so nervous, I could barely eat. I just wanted everything to go smoothly, and until certain people arrived, I wouldn't be able to relax. Jimmi had texted a few minutes earlier that Justin, our sound man, was there, but the main attraction was still MIA. I let Jen know that we still waiting, she checked her watch and said, "I'll give him 10 minutes. He was supposed to be here at noon for sound check. At 12:30 I'll call his manager."
I continued to pace around the room, while trying very hard to smile and chat with my guests. But my mind was so preoccupied, I was having trouble thinking. To make things worse, my parents' house has almost no cell phone reception at all. If Jimmi tried to call or text to let me know what was going on, it probably wouldn't have gone through anyway. Finally, at 12:30, Jen went upstairs to call the manager. She came back a few minutes later and whispered to me, "Between 1 and 1:30 now." I gave her a puzzled look. "It's ok," she said. "He'll still have plenty of time since the show isn't supposed to start until 2:30." She was right. I just wanted him to show up so I could relax! But what if he doesn't? Oh my GOD! We'll be stuck playing bridal shower games!! NOOOOOOO!!!!
Just then, an e-mail managed to make its way to my phone. It was from Jimmi. My stomach dropped as I quickly opened the message. It said, "Tommy Lee is getting us backstage passes for the show tonight!" My brain had to shift out of shower mode and into concert mode. "Oh my god!" I exclaimed out loud. Everyone looked up. "Jimmi and I are going backstage at the Motley Crue show tonight! Jimmi e-mailed Tommy Lee and he wrote back and offered us passes!" Ok, that was enough to make me happy for a few minutes. But then I looked at the clock. It was 1:15 and he still wasn't here.
I was really starting to freak out. "The manager said between 1 and 1:30," Jen said. "He still has a few minutes." At 1:45 I was able to get through to Jimmi. The entertainment still wasn't here. Jen made another phone call. The manager promised to find out what was going on and call her back. But before he could, Jen's cell rang and went right to voicemail. Stupid cell phones!! She checked her voicemail and it wasn't the manager, it was the talent! He apologized for being late and said he'd be at the house before 2:30. Before 2:30? What?! He's supposed to perform at 2:30! He won't have time for sound check! We won't...My thoughts were cut off by the house phone ringing. It was the manager. He explained that there was a problem with flight delays and that's why everyone was running so late. Ok, I guess there's nothing we can do about that. At least we heard his voice on the message confirming that he was on his way.
I looked at Jen and my mom, "I guess I should go open presents to waste some time, huh?" They agreed. I know the present opening is a big part of bridal showers, but I wasn't planning on doing it. At least not in front of everyone! At this point, I had no choice. Back down the stairs we went to begin the madness of unwrapping and holding up pots and pans so everyone could "oooh" and "ahhh"! Don't get me wrong. I appreciate everything I was given. I love that my friends and family were there to share this moment with me. I just didn't want this to be a typical shower. I wanted to shake it up a bit.
It was 2:25 and I was just finishing up my last gift when the house phone rang. I snuck away to answer it and all I needed to hear was, "He's here. He just needs 10 minutes and you can come down." The nerves turned to excitement and my heart started racing. I went back to my seat and opened the last present. Before anyone could move, I announced, "Everyone, please just sit tight. We have a surprise for you, so don't leave."
It was the longest 10 minutes of my life! At last, the call came that everything was ready. I let everyone know that we'd be walking to the back of the property, then I hitched a ride on my dad's golf cart and waved goodbye. Yeah, I know. Not fair, right? But I was wearing really high heels! And, if I'm be honest here, I wanted to meet him before the show!
I walked into the stable, which was set up like a small auditorium. There was a stage in the corner with two microphones, two bar stools, a guitar stand and a drum set. We didn't think we were going to need them for the performance, but the drums are a permanent fixture in the room so they just left them there. In front of the stage, I saw about 50 folding chairs set up in rows. There was a sound board off to the side, and high and low monitors all around. Jimmi walked over and gave me a kiss, then I hugged Justin, who I hadn't seen in over a year. "Thank you so much for doing this," I said to him. Then, before the crowd got there, Jimmi asked, "Do you want to meet him?" My eyes lit up, "Can I? Will he mind?" Jimmi started walking to me to a door leading to a room upstairs. "No, he's cool. Come on!"
I followed Jimmi up the stairs. Not an easy task when you're wearing platform stilettos! When we got to the top, I saw a super-cute, young guy with long, blonde hair and a killer smile. I knew he was the guitarist because I had seen him a year earlier when he played The Starland Ballroom in NJ. I scanned the room to find what I was looking for. There was another man with salt and pepper hair and glasses and a blue t-shirt. Nope. That's when the bathroom door opened, and my teenage fantasy walked out. Sebastian Bach, the original lead singer of Skid Row, was standing in front of me, at my parents' house! What a surreal moment that was! It was as if he had jumped out of a poster on my wall in 1989 and landed at my bridal shower 22 years later. I had to look up at him, even though my shoes gave me at least an extra five inches. His long, blonde hair hadn't thinned at all over the years. He was wearing brown cowboy boots, covered by black, tight pants with leather stars up the sides and a striped, button-down shirt that was peeking out from underneath a black blazer.
Wow. I can't believe this is happening.
It was a strange moment for me. I don't get start struck anymore. I worked in the music industry for years and I've met just about everyone I've ever wanted to meet; even Sebastian! But I've never had a rock star booked to play a private party at my house, all for me.
This is nuts!
Sebastian walked over to me with a smile. "This is Suzanne, the bride," Jimmi said as he introduced us. Sebastian gave me a hug and immediately started complimenting the house and the party room and told me how cool he thought the whole thing was. Then he said, "You wanted me to do the tune from Jekyll & Hyde, right? We're doing it! Nick (his guitarist) is learning it right now." He giggled and it reminded me of Ernie from Sesame Street. When Jen was filling out the information for the contract, she had asked if there was anything I wanted Sebastian to sing. I thought for a while and remembered when I saw him play the lead, or leads, in Jekyll & Hyde on Broadway. He was unbelievable in both roles, but when he sang, "This is The Moment", I was blown away. His manger said he'd ask, but told us not to get our hopes up. But here we are, five minutes before his performance, and Sebastian is telling me that he's going to sing that song. He's going to do it because that's what I want.
"Ok, I'm gonna go back downstairs now," I said, as I tried to hold back my excitement. I walked back to the party room, and as I opened the door, I saw all of my friends and family sitting there waiting to see what would happen next. The smile was plastered on my face as they watched me walk across the floor to my chair in the middle of the front row.
Justin positioned himself at the sound board, and Jen got up to announce our special guest. "You might know him from reality TV, or his starring role in Jekyll & Hyde on Broadway. You might know him from his guest appearances on Gilmore Girls. Or maybe you've heard that he just wrapped up filming the movie version of Rock of Ages. But you'll definitely know him as the original voice of Skid Row! Please welcome Sebastian Bach!" There were gasps of surprise, then the door opened, and out he came. I don't think I've ever hear 40 women make that much noise!
Sebastian and Nick made their way to the stage as my guests watched in shock. "Wow! This is cool! I've never done anything like this before," Sebastian laughed. Then he announced that he was going to sing "Your Song" by Elton John. But it wasn't just that song. It was actually MY song! He added my name into the lyrics and sang it directly to me. The second he opened his mouth, I started to cry. I don't know if they were tears of excitement or disbelief or happiness, but they kept flowing until the song was done. And when it was, Sebastian said something about all chicks liking Journey, and broke into "Don't Stop Believing." Everyone was singing along, so I guess he was right! Then it was time for my request. "I haven't sung this song since...well, since the car ride over here, actually!" Sebastian joked and everyone chuckled. And then he started to sing "This is The Moment". It was so beautiful, it brought tears to my mom's eyes. I don't think enough people realize how talented Sebastian really is. Yes, he can scream out those killer notes in any rock song ever written, but as he said yesterday, "Every bad boy has a soft side." And his soft side will make any woman's heart melt. His voice is like liquid gold.
When he was finished, I waited for the screaming to stop and yelled, "What are you doing on September 3rd? Wanna trade places with him?" And I pointed to Jimmi. Everyone laughed, yes, even Jimmi. The next song was the Skid Row favorite, "I Remember You." I don't think you could have beat the smile off my face at that moment. But it was really getting hot in the room, and the fans weren't doing anything to cool it down. Sebastian took off his blazer, "I guess I picked the wrong day to wear a jacket!" he said. I couldn't help myself, and I screamed, "Take it all off!" He turned and looked at me in surprise. "All of it? But this is a wedding! I can't do that!" I tried again, "It's not a wedding, it's a shower! You can take your shirt off." He came back at me, "Aren't you getting married?" I shot back, "I'm not married yet!" Sebastian turned to look at Jimmi and said, "Your husband's right here!" Jimmi joined in the fun and shouted, "It's ok! I'll just have a free pass!" I'm not sure what anyone was thinking at that moment, but I was having more fun than I'd had in months.
After we compromised on keeping the shirt on, but leaving it unbuttoned, Sebastian said, "Is there any way I can get a little wine?" Little did he know, he had come to the right place! "My dad makes wine!" I yelled. With that, a glass with a taste of home made goodness was brought to the stage. After one sip, Sebastian's eyes got wide and he announced, "Delicioso! That's good! So smooth!" Well, that's all my dad needed to hear. He filled a glass and brought it to the stage himself. Then he and the rock star had a mini conversation about wine-making right in the middle of the performance. What the HELL is going on?? I think I'm in a alternate universe. Wow. My dad really has grown up in the last few months!
With the wine situation under control, Sebastian turned to Nick and said, "What should we play now? We don't really have a lot of slow, acoustic type stuff." Then he looked at me, "Can we rock it out?" "Yes!" I screamed. "Do it!" They broke into a more upbeat tune, but it just wasn't working with only an acoustic guitar. They decided to try "Whole Lotta Love" by Led Zepplin, but Sebastian said, "If we're gonna do Zepplin, we need a drummer!" I'm pretty sure every head in the room turned in Jimmi's direction. "Get up here, dude!" Sebastian beckoned. Jimmi tried to resist because he doesn't like overstepping boundaries, but Sebastian needed a drummer, there was a drum kit set up, and he is a drummer. No brainer.
Jimmi walked up to the stage as the screaming and cheering filled the room. The three blonde musicians broke into the song they had never rehearsed like it was nothing. Jimmi's face lit up the way it does every time he's on stage, and my heart was happy. When they finished, I stood up and said, "Is it hot in here?" Yes, it was about a million degrees in the room, but that's not what I meant! My fiance was on stage playing drums with the man who was plastered all over my walls, and my school locker and my notebooks when I was 14... and probably 15 and 16, too! It was amazing. Beyond amazing!
Jimmi got up and thanked Sebastian, but Sebastian just looked at him and said, "Where do you think you're going? Sit back down and play!" So he did! Song after song, request after request, they kept playing. At one point Sebastian joked, "All we need is a bass player and we're set!" Well, ask and you shall receive! I pointed to the sound board where Justin was sitting. "He plays bass!" A few minutes later, a bass was in Justin's hands, and he sat at the board plucking away.
The makeshift band played anything that came to mind. A little Aerosmith, some Guns n' Roses, Queen...you name it, they played it! All of a sudden, I looked at Jen and asked, "What time is it?" She answered, "It's 5:00! He's been playing for almost two hours. I hope he doesn't feel obligated to keep going. The contract says 40 minutes!" With that, she got up to let Sebastian's driver/bodyguard, Bobby, know that he could stop at any time. Bobby said, "If he wants to play, let him play." Good enough for us!
Over and over again, Sebastian kept saying, "This is really fun!" or "This is cool!" He made jokes like, "We were supposed to play for 20 minutes. That was 47 hours ago!" Or, "I think we started playing yesterday!" We were all laughing so hard and having so much fun, and they just kept playing. But all good things must come to an end, as the saying goes. Bobby reminded Sebastian that they needed to get Nick to the airport because he had a flight to catch. Sebastian thanked us all for having him, and the show was over.
But that wasn't the end of the party! Even though they were in a hurry, Sebastian stayed until every autograph was signed, and every photo was taken. He talked to each guest and made everyone feel at ease.
Just before he left, Sebastian was making himself a sandwich from the deli tray and I interrupted him. I just had to thank him. "Thank you so much for doing this. I really appreciate it." He was so sweet, "It was so much fun! We've never done anything like this before." Since Jen had explained my health situation to his manager, I assumed Sebastian knew all about it, and I blurted out, "I really needed this today. I'm starting chemo on Tuesday and..." The poor guy's face fell like a brick. "What?" He asked. "You didn't know? That's why you're here. I thought your manager told you." I felt terrible! He looked so sad! "Oh my God!" he said and grabbed me into a tight hug. "If you need anything, I'm here for you." He assured me. "I mean it, anything you need. Just call me. I'm so sorry. I had no idea. Actually, I'm glad I didn't know or I would've been bawling through that entire performance." He kept hugging me and telling me everything was going to be ok.
It was really time for him to go now. My dad gave him a few bottles of wine to take with him, then invited him to come back and play again. I couldn't help myself from saying, "Cool, well I grew up here, so if you come back, I'll make sure to take you around the property and show you all of my secret make out spots." Sebastian's facial expression was classic and I covered my dad's ears after the fact, but he just shook his head and laughed. I swear, this cancer thing has really chilled my dad out!
Sebastian got into the car and rolled the window down. "Anything you need, I'm here. Just text me." I thanked him and waved as they pulled away.
Holy CRAP that was amazing!
I looked at the time.
Holy CRAP! We have to go!
I said goodbye to the remaining guests and went back up the the house to change my clothes. If Jimmi and I didn't get on the road soon, we'd miss Poison! I exchanged my good girl look for my edgier rocker chick attire, refreshed my makeup, kissed my parents and Jen and bolted out the door.
Luckily, there wasn't any traffic and we made it to the concert with plenty of time to spare. Jimmi headed up to the box office window to pick up our backstage passes as I chatted with a friend I had run into along the way. He came back beaming and holding up the passes, "I got them! Tommy also left tickets. I told him we already had them, but I guess he wasn't sure." I took the tickets from him to check the section. "Ummm, Jimmi. These are front row, dead center." He grabbed them back, "What?! No way!" He immediately e-mailed Tommy. "Front row, dude?" Tommy wrote back, "Hell yea!"
I swear, this day was turning into all of my 9th grade fantasies wrapped into one.
We sold our other set of tickets and headed for the front. Poison hit the stage and Bret Micheals was standing over me. He looked down, caught my eye and said, "I remember you!" Wow. Pretty cool. I haven't seen him since last year, but I guess the whole "My friends bet me $1000 I can't get a kiss" thing left an impression.
Poison rocked it, and we still had one more band to go. Motley Crue hit the stage with screaming guitars and fireworks! Halfway through, Tommy Lee left his seat behind the drums and headed to the piano up front. He saw Jimmi and gave a wave and a smile. At the end of the show, Nikki Sixx spit red "blood" all over our faces and we both laughed and cheered. Of course, I wasn't expecting a crew member to come at us and dump an entire bucket of the same sticky substance over our heads! Jimmi's white shirt turned pink, but he loved every minute of it! Luckily, I was wearing dark colors, so I think I can salvage my outfit. I hope!
When it was all over, Jimmi texted Tommy's security guard, Kevin, who called back and told us where to meet him. "We're waiting for a police escort, so Tommy only has a few minutes,"Kevin explained to us and the four others who were following him. We walked around the back of the venue and down the stairs. The hallway had doors on each side, and over the doors were signs that read, "Tommy, Nikki, Vince, Mick". Kevin knocked on Tommy's door, and in we went.
Tommy was standing there with a white t-shirt on that read "Who are all these people and where's my underwear?" He had on baggy pants and lots of eyeliner. There was a young, adorable girl in the room with him, who immediately introduced herself as Sophie, Tommy's girlfriend. Tommy said hello to everyone and the four other people who had walked down with us took over the conversation and wouldn't let up. Jimmi and I just stood there waiting for our turn. Kevin popped his head in to let Tommy know the escort was there so he could leave whenever he was ready. Still stuck in a conversation with some idiot in a tank top who finally revealed that he was Mike "The Situation's" brother, Tommy found his chance and turned to Sophie, pointed to Jimmi and said, "This is the guy I was telling you about with the tattoo of my face on his leg! Do you mind, dude?" Jimmi knew Tommy was asking him to drop his pants so his girlfriend could see his tattoo. "Not at all, man," Jimmi obliged. For the third time this year, Jimmi stood in front of a roomful of people in his underwear while they admired and took pictures of his leg. And he loved it!
After Jimmi got dressed, we were able to take a quick picture with Tommy, then he had to leave. We thanked him again, and headed out.
And that's the story of my amazing, perfect day. Yes, I know I said I'd be writing two posts tonight, but that's not happening. It's way too late, and I have my first radiation and chemo treatments starting at 9:00 am. It's going to suck and I'm scared out of my mind, but I will get through it.
And if I need a little lift, all I'll have to do is replay the events of July 17, 2011 in my head.
It was an absolutely perfect day.
Yes, I am aware that I should've posted about this last night, but it was so late when we got home, I just couldn't. And since I absolutely do NOT want to spoil this amazingly happy story about yesterday with the realities of today, I have decided to write two separate posts tonight. One will be about yesterday and one will be about today.
Ok, enough babbling! Get to the good stuff already!!
So...my bridal shower was yesterday. But it wasn't a typical shower. Bridal Bingo anyone? Nope, not for me! After all the crap that's been thrown at me recently, my mom and my matron of honor, Jen, wanted to throw me a party no one would ever forget. A party that would put the smile back on my face; at least for a little while.
But what could they do??
After a lot of talking and throwing out ideas, I came up with something completely out of the ordinary for a bridal shower. Something that was totally in line with my personality and interests. Something no one would expect. But could it be done?
With less than two week to go before the date of the shower, the wheels were set in motion, and Jen was in the driver's seat. I can't even tell you how hard she worked to get the job done. She was relentless with phone calls and e-mails and follow-ups and more e-mails and more phone calls. She and my mom went back and forth every day discussing every minor detail that needed attention. Every day, we'd wait for more information. Every day we'd get more and more nervous that something was being overlooked. But once the contract was signed, just three days before the party, all we could do was wait for the day to come and hope everything turned out perfectly.
Finally, the day was here! I was so nervously excited, I didn't know what to do first. I checked my video camera to make sure it was charged. Then I changed the SD card on my regular camera and checked the charge on that one too. I took a shower, dried my hair, did my makeup. I threw on a super-cute, mint green minidress with white, platform stilettos. Then I packed a bag with snakeskin print leggings and a purposely ripped up and studded tank top, another pair of shoes, my makeup bag and a small, black wristlet. Why did I need the bag? Oh, right. Did I mention that after my shower, Jimmi and I had tickets for the Motley Crue/Posion show? I certainly couldn't go to a concert dressed in bridal shower garb!
Jimmi left the house about 45 minutes before Jen and I did. He needed to get to my parents' house, where the shower was being held, to help set up for the main event. Jen and I waited for my friend, Beth, to get here, then we headed off to the party. I'll admit it. It was really hard to keep my mouth shut about the surprise, so I blabbed to a few people. Beth was one of them. But I think I only told five out of 45 people. Not too bad for me!
We arrived at my parents' house at 11:40, 20 minutes before the party started. That gave us enough time to head to the stable on the property that isn't used for horses, but for outdoor parties instead. When we pulled up, Jimmi was outside. "Is Justin here?" I asked about our friend who was coming from Brooklyn to run sound for the day. "Not yet, but he's close," Jimmi assured me. "Is anyone else here?" Jimmi knew what I meant. "No, not yet," he said. Discouraged, Jen and I drove up to the actual house so I'd be there when the guests arrived.
At 12:00 sharp, the ladies started to arrive. I was so nervous, I could barely eat. I just wanted everything to go smoothly, and until certain people arrived, I wouldn't be able to relax. Jimmi had texted a few minutes earlier that Justin, our sound man, was there, but the main attraction was still MIA. I let Jen know that we still waiting, she checked her watch and said, "I'll give him 10 minutes. He was supposed to be here at noon for sound check. At 12:30 I'll call his manager."
I continued to pace around the room, while trying very hard to smile and chat with my guests. But my mind was so preoccupied, I was having trouble thinking. To make things worse, my parents' house has almost no cell phone reception at all. If Jimmi tried to call or text to let me know what was going on, it probably wouldn't have gone through anyway. Finally, at 12:30, Jen went upstairs to call the manager. She came back a few minutes later and whispered to me, "Between 1 and 1:30 now." I gave her a puzzled look. "It's ok," she said. "He'll still have plenty of time since the show isn't supposed to start until 2:30." She was right. I just wanted him to show up so I could relax! But what if he doesn't? Oh my GOD! We'll be stuck playing bridal shower games!! NOOOOOOO!!!!
Just then, an e-mail managed to make its way to my phone. It was from Jimmi. My stomach dropped as I quickly opened the message. It said, "Tommy Lee is getting us backstage passes for the show tonight!" My brain had to shift out of shower mode and into concert mode. "Oh my god!" I exclaimed out loud. Everyone looked up. "Jimmi and I are going backstage at the Motley Crue show tonight! Jimmi e-mailed Tommy Lee and he wrote back and offered us passes!" Ok, that was enough to make me happy for a few minutes. But then I looked at the clock. It was 1:15 and he still wasn't here.
I was really starting to freak out. "The manager said between 1 and 1:30," Jen said. "He still has a few minutes." At 1:45 I was able to get through to Jimmi. The entertainment still wasn't here. Jen made another phone call. The manager promised to find out what was going on and call her back. But before he could, Jen's cell rang and went right to voicemail. Stupid cell phones!! She checked her voicemail and it wasn't the manager, it was the talent! He apologized for being late and said he'd be at the house before 2:30. Before 2:30? What?! He's supposed to perform at 2:30! He won't have time for sound check! We won't...My thoughts were cut off by the house phone ringing. It was the manager. He explained that there was a problem with flight delays and that's why everyone was running so late. Ok, I guess there's nothing we can do about that. At least we heard his voice on the message confirming that he was on his way.
I looked at Jen and my mom, "I guess I should go open presents to waste some time, huh?" They agreed. I know the present opening is a big part of bridal showers, but I wasn't planning on doing it. At least not in front of everyone! At this point, I had no choice. Back down the stairs we went to begin the madness of unwrapping and holding up pots and pans so everyone could "oooh" and "ahhh"! Don't get me wrong. I appreciate everything I was given. I love that my friends and family were there to share this moment with me. I just didn't want this to be a typical shower. I wanted to shake it up a bit.
It was 2:25 and I was just finishing up my last gift when the house phone rang. I snuck away to answer it and all I needed to hear was, "He's here. He just needs 10 minutes and you can come down." The nerves turned to excitement and my heart started racing. I went back to my seat and opened the last present. Before anyone could move, I announced, "Everyone, please just sit tight. We have a surprise for you, so don't leave."
It was the longest 10 minutes of my life! At last, the call came that everything was ready. I let everyone know that we'd be walking to the back of the property, then I hitched a ride on my dad's golf cart and waved goodbye. Yeah, I know. Not fair, right? But I was wearing really high heels! And, if I'm be honest here, I wanted to meet him before the show!
I walked into the stable, which was set up like a small auditorium. There was a stage in the corner with two microphones, two bar stools, a guitar stand and a drum set. We didn't think we were going to need them for the performance, but the drums are a permanent fixture in the room so they just left them there. In front of the stage, I saw about 50 folding chairs set up in rows. There was a sound board off to the side, and high and low monitors all around. Jimmi walked over and gave me a kiss, then I hugged Justin, who I hadn't seen in over a year. "Thank you so much for doing this," I said to him. Then, before the crowd got there, Jimmi asked, "Do you want to meet him?" My eyes lit up, "Can I? Will he mind?" Jimmi started walking to me to a door leading to a room upstairs. "No, he's cool. Come on!"
I followed Jimmi up the stairs. Not an easy task when you're wearing platform stilettos! When we got to the top, I saw a super-cute, young guy with long, blonde hair and a killer smile. I knew he was the guitarist because I had seen him a year earlier when he played The Starland Ballroom in NJ. I scanned the room to find what I was looking for. There was another man with salt and pepper hair and glasses and a blue t-shirt. Nope. That's when the bathroom door opened, and my teenage fantasy walked out. Sebastian Bach, the original lead singer of Skid Row, was standing in front of me, at my parents' house! What a surreal moment that was! It was as if he had jumped out of a poster on my wall in 1989 and landed at my bridal shower 22 years later. I had to look up at him, even though my shoes gave me at least an extra five inches. His long, blonde hair hadn't thinned at all over the years. He was wearing brown cowboy boots, covered by black, tight pants with leather stars up the sides and a striped, button-down shirt that was peeking out from underneath a black blazer.
Wow. I can't believe this is happening.
It was a strange moment for me. I don't get start struck anymore. I worked in the music industry for years and I've met just about everyone I've ever wanted to meet; even Sebastian! But I've never had a rock star booked to play a private party at my house, all for me.
This is nuts!
Sebastian walked over to me with a smile. "This is Suzanne, the bride," Jimmi said as he introduced us. Sebastian gave me a hug and immediately started complimenting the house and the party room and told me how cool he thought the whole thing was. Then he said, "You wanted me to do the tune from Jekyll & Hyde, right? We're doing it! Nick (his guitarist) is learning it right now." He giggled and it reminded me of Ernie from Sesame Street. When Jen was filling out the information for the contract, she had asked if there was anything I wanted Sebastian to sing. I thought for a while and remembered when I saw him play the lead, or leads, in Jekyll & Hyde on Broadway. He was unbelievable in both roles, but when he sang, "This is The Moment", I was blown away. His manger said he'd ask, but told us not to get our hopes up. But here we are, five minutes before his performance, and Sebastian is telling me that he's going to sing that song. He's going to do it because that's what I want.
"Ok, I'm gonna go back downstairs now," I said, as I tried to hold back my excitement. I walked back to the party room, and as I opened the door, I saw all of my friends and family sitting there waiting to see what would happen next. The smile was plastered on my face as they watched me walk across the floor to my chair in the middle of the front row.
Justin positioned himself at the sound board, and Jen got up to announce our special guest. "You might know him from reality TV, or his starring role in Jekyll & Hyde on Broadway. You might know him from his guest appearances on Gilmore Girls. Or maybe you've heard that he just wrapped up filming the movie version of Rock of Ages. But you'll definitely know him as the original voice of Skid Row! Please welcome Sebastian Bach!" There were gasps of surprise, then the door opened, and out he came. I don't think I've ever hear 40 women make that much noise!
Sebastian and Nick made their way to the stage as my guests watched in shock. "Wow! This is cool! I've never done anything like this before," Sebastian laughed. Then he announced that he was going to sing "Your Song" by Elton John. But it wasn't just that song. It was actually MY song! He added my name into the lyrics and sang it directly to me. The second he opened his mouth, I started to cry. I don't know if they were tears of excitement or disbelief or happiness, but they kept flowing until the song was done. And when it was, Sebastian said something about all chicks liking Journey, and broke into "Don't Stop Believing." Everyone was singing along, so I guess he was right! Then it was time for my request. "I haven't sung this song since...well, since the car ride over here, actually!" Sebastian joked and everyone chuckled. And then he started to sing "This is The Moment". It was so beautiful, it brought tears to my mom's eyes. I don't think enough people realize how talented Sebastian really is. Yes, he can scream out those killer notes in any rock song ever written, but as he said yesterday, "Every bad boy has a soft side." And his soft side will make any woman's heart melt. His voice is like liquid gold.
When he was finished, I waited for the screaming to stop and yelled, "What are you doing on September 3rd? Wanna trade places with him?" And I pointed to Jimmi. Everyone laughed, yes, even Jimmi. The next song was the Skid Row favorite, "I Remember You." I don't think you could have beat the smile off my face at that moment. But it was really getting hot in the room, and the fans weren't doing anything to cool it down. Sebastian took off his blazer, "I guess I picked the wrong day to wear a jacket!" he said. I couldn't help myself, and I screamed, "Take it all off!" He turned and looked at me in surprise. "All of it? But this is a wedding! I can't do that!" I tried again, "It's not a wedding, it's a shower! You can take your shirt off." He came back at me, "Aren't you getting married?" I shot back, "I'm not married yet!" Sebastian turned to look at Jimmi and said, "Your husband's right here!" Jimmi joined in the fun and shouted, "It's ok! I'll just have a free pass!" I'm not sure what anyone was thinking at that moment, but I was having more fun than I'd had in months.
After we compromised on keeping the shirt on, but leaving it unbuttoned, Sebastian said, "Is there any way I can get a little wine?" Little did he know, he had come to the right place! "My dad makes wine!" I yelled. With that, a glass with a taste of home made goodness was brought to the stage. After one sip, Sebastian's eyes got wide and he announced, "Delicioso! That's good! So smooth!" Well, that's all my dad needed to hear. He filled a glass and brought it to the stage himself. Then he and the rock star had a mini conversation about wine-making right in the middle of the performance. What the HELL is going on?? I think I'm in a alternate universe. Wow. My dad really has grown up in the last few months!
With the wine situation under control, Sebastian turned to Nick and said, "What should we play now? We don't really have a lot of slow, acoustic type stuff." Then he looked at me, "Can we rock it out?" "Yes!" I screamed. "Do it!" They broke into a more upbeat tune, but it just wasn't working with only an acoustic guitar. They decided to try "Whole Lotta Love" by Led Zepplin, but Sebastian said, "If we're gonna do Zepplin, we need a drummer!" I'm pretty sure every head in the room turned in Jimmi's direction. "Get up here, dude!" Sebastian beckoned. Jimmi tried to resist because he doesn't like overstepping boundaries, but Sebastian needed a drummer, there was a drum kit set up, and he is a drummer. No brainer.
Jimmi walked up to the stage as the screaming and cheering filled the room. The three blonde musicians broke into the song they had never rehearsed like it was nothing. Jimmi's face lit up the way it does every time he's on stage, and my heart was happy. When they finished, I stood up and said, "Is it hot in here?" Yes, it was about a million degrees in the room, but that's not what I meant! My fiance was on stage playing drums with the man who was plastered all over my walls, and my school locker and my notebooks when I was 14... and probably 15 and 16, too! It was amazing. Beyond amazing!
Jimmi got up and thanked Sebastian, but Sebastian just looked at him and said, "Where do you think you're going? Sit back down and play!" So he did! Song after song, request after request, they kept playing. At one point Sebastian joked, "All we need is a bass player and we're set!" Well, ask and you shall receive! I pointed to the sound board where Justin was sitting. "He plays bass!" A few minutes later, a bass was in Justin's hands, and he sat at the board plucking away.
The makeshift band played anything that came to mind. A little Aerosmith, some Guns n' Roses, Queen...you name it, they played it! All of a sudden, I looked at Jen and asked, "What time is it?" She answered, "It's 5:00! He's been playing for almost two hours. I hope he doesn't feel obligated to keep going. The contract says 40 minutes!" With that, she got up to let Sebastian's driver/bodyguard, Bobby, know that he could stop at any time. Bobby said, "If he wants to play, let him play." Good enough for us!
Over and over again, Sebastian kept saying, "This is really fun!" or "This is cool!" He made jokes like, "We were supposed to play for 20 minutes. That was 47 hours ago!" Or, "I think we started playing yesterday!" We were all laughing so hard and having so much fun, and they just kept playing. But all good things must come to an end, as the saying goes. Bobby reminded Sebastian that they needed to get Nick to the airport because he had a flight to catch. Sebastian thanked us all for having him, and the show was over.
But that wasn't the end of the party! Even though they were in a hurry, Sebastian stayed until every autograph was signed, and every photo was taken. He talked to each guest and made everyone feel at ease.
Just before he left, Sebastian was making himself a sandwich from the deli tray and I interrupted him. I just had to thank him. "Thank you so much for doing this. I really appreciate it." He was so sweet, "It was so much fun! We've never done anything like this before." Since Jen had explained my health situation to his manager, I assumed Sebastian knew all about it, and I blurted out, "I really needed this today. I'm starting chemo on Tuesday and..." The poor guy's face fell like a brick. "What?" He asked. "You didn't know? That's why you're here. I thought your manager told you." I felt terrible! He looked so sad! "Oh my God!" he said and grabbed me into a tight hug. "If you need anything, I'm here for you." He assured me. "I mean it, anything you need. Just call me. I'm so sorry. I had no idea. Actually, I'm glad I didn't know or I would've been bawling through that entire performance." He kept hugging me and telling me everything was going to be ok.
It was really time for him to go now. My dad gave him a few bottles of wine to take with him, then invited him to come back and play again. I couldn't help myself from saying, "Cool, well I grew up here, so if you come back, I'll make sure to take you around the property and show you all of my secret make out spots." Sebastian's facial expression was classic and I covered my dad's ears after the fact, but he just shook his head and laughed. I swear, this cancer thing has really chilled my dad out!
Sebastian got into the car and rolled the window down. "Anything you need, I'm here. Just text me." I thanked him and waved as they pulled away.
Holy CRAP that was amazing!
I looked at the time.
Holy CRAP! We have to go!
I said goodbye to the remaining guests and went back up the the house to change my clothes. If Jimmi and I didn't get on the road soon, we'd miss Poison! I exchanged my good girl look for my edgier rocker chick attire, refreshed my makeup, kissed my parents and Jen and bolted out the door.
Luckily, there wasn't any traffic and we made it to the concert with plenty of time to spare. Jimmi headed up to the box office window to pick up our backstage passes as I chatted with a friend I had run into along the way. He came back beaming and holding up the passes, "I got them! Tommy also left tickets. I told him we already had them, but I guess he wasn't sure." I took the tickets from him to check the section. "Ummm, Jimmi. These are front row, dead center." He grabbed them back, "What?! No way!" He immediately e-mailed Tommy. "Front row, dude?" Tommy wrote back, "Hell yea!"
I swear, this day was turning into all of my 9th grade fantasies wrapped into one.
We sold our other set of tickets and headed for the front. Poison hit the stage and Bret Micheals was standing over me. He looked down, caught my eye and said, "I remember you!" Wow. Pretty cool. I haven't seen him since last year, but I guess the whole "My friends bet me $1000 I can't get a kiss" thing left an impression.
Poison rocked it, and we still had one more band to go. Motley Crue hit the stage with screaming guitars and fireworks! Halfway through, Tommy Lee left his seat behind the drums and headed to the piano up front. He saw Jimmi and gave a wave and a smile. At the end of the show, Nikki Sixx spit red "blood" all over our faces and we both laughed and cheered. Of course, I wasn't expecting a crew member to come at us and dump an entire bucket of the same sticky substance over our heads! Jimmi's white shirt turned pink, but he loved every minute of it! Luckily, I was wearing dark colors, so I think I can salvage my outfit. I hope!
When it was all over, Jimmi texted Tommy's security guard, Kevin, who called back and told us where to meet him. "We're waiting for a police escort, so Tommy only has a few minutes,"Kevin explained to us and the four others who were following him. We walked around the back of the venue and down the stairs. The hallway had doors on each side, and over the doors were signs that read, "Tommy, Nikki, Vince, Mick". Kevin knocked on Tommy's door, and in we went.
Tommy was standing there with a white t-shirt on that read "Who are all these people and where's my underwear?" He had on baggy pants and lots of eyeliner. There was a young, adorable girl in the room with him, who immediately introduced herself as Sophie, Tommy's girlfriend. Tommy said hello to everyone and the four other people who had walked down with us took over the conversation and wouldn't let up. Jimmi and I just stood there waiting for our turn. Kevin popped his head in to let Tommy know the escort was there so he could leave whenever he was ready. Still stuck in a conversation with some idiot in a tank top who finally revealed that he was Mike "The Situation's" brother, Tommy found his chance and turned to Sophie, pointed to Jimmi and said, "This is the guy I was telling you about with the tattoo of my face on his leg! Do you mind, dude?" Jimmi knew Tommy was asking him to drop his pants so his girlfriend could see his tattoo. "Not at all, man," Jimmi obliged. For the third time this year, Jimmi stood in front of a roomful of people in his underwear while they admired and took pictures of his leg. And he loved it!
After Jimmi got dressed, we were able to take a quick picture with Tommy, then he had to leave. We thanked him again, and headed out.
And that's the story of my amazing, perfect day. Yes, I know I said I'd be writing two posts tonight, but that's not happening. It's way too late, and I have my first radiation and chemo treatments starting at 9:00 am. It's going to suck and I'm scared out of my mind, but I will get through it.
And if I need a little lift, all I'll have to do is replay the events of July 17, 2011 in my head.
It was an absolutely perfect day.
Saturday, July 16, 2011
A Little Bit of Excitement
Last night was tough. As I tucked my boys into bed, and sang Billy Joel's "Goodnight My Angel" to each of them, I realized that I have no idea when my babies will be sleeping at my house again. This is their dad's weekend with them, but he allowed me to have Friday night so I could squeeze in a little more time with them before my treatments begin on Tuesday. Once they start, I can't guarantee I'll be feeling well enough to take care of my little monkeys. At this point, we've decided they can visit whenever I'm up to it, but they'll probably have to sleep at their dad's until this nightmare is over.
This sucks.
Since we still had a few hours together today, I decided to take my boys to the pool. Jen, my college friend, and matron of honor, who had driven in from Massachusetts yesterday, helped me get everyone into their bathing suits and loaded into the car. Even though the doctors tell me I'm still not allowed in the pool, I needed to take today to soak up the sun. Once chemo starts, it'll be all shade and oversized hats for me.
When we arrived at the pool, Jen and the boys headed for the cool water while I baked on a lounge chair. Beads of sweat dripped down my forehead and glistened all over my body. What I wouldn't do for one little dip. I watched as Dylan jumped off the diving board, swam to the ladder, got out of the pool, circled back, and started the whole process over again. Then my eyes scanned the water until they found Justin, who had his arms wrapped around Jen's neck while he watched his brother splash into the deep end. It's my last healthy day with my babies and I can't even play with them.
This sucks.
I felt my phone vibrate and held it up to my face. I squinted in the bright sunlight until I could read the words my ex-husband had sent, "I'd like to pick them up at 2."I checked the time on the screen. 12:15. Hmmm...Not much time left, but I really didn't have a choice. It's his weekend. I let them swim a bit more, then ordered some lunch. They were on the playground at about 1:50 when Jen said, "Jim's here." Oh, did I mention my ex's name is Jim? Yeah, I went from Jim to Jimmi. Hey, at least I won't say the wrong name by accident!
Anyway...so Jim, who is habitually 15-30 minutes late at all times, arrived 10 minutes early on my last pre-chemo day with the kids. I barely had a chance to give them hugs, and he was hustling them out the door. "Hey!" I yelled. "Can I at least say goodbye?" Jim slowed down so Jen and I could catch up and walk with them to the parking lot. I hugged and kissed each one of them over and over again. "You know you can call me any time, right?" I asked them. They nodded. "And you can see me whenever I'm feeling up to it, ok?" They nodded again. "I love you," I choked on the tears. They threw their arms around me, "I love you too," they said in stereo. And then they were gone.
I walked into my house, which already seemed too quiet, and hit the play button on the blinking answering machine. "Hi, Suzanne, it's Rachel from Priscilla of Boston. I just want to tell you that your wedding gown came in today..." I didn't even listen to the rest of the message. I turned to Jen who was coming down the stairs and said, "My dress is in!" Her face resembled the excitement I was feeling as I picked up the phone to call my mom. "What are you doing later?" I asked her. "My dress is in! If I can get an appointment in a few hours, can you and Daddy meet us there?" She agreed and I dialed the number for Priscilla of Boston.
4:30! I'm finally going to put on my beautiful, perfect, gorgeous wedding gown at 4:30!
It seems like forever since I ordered the gown in October. Yes, I ordered my dress nine months ago and it's just coming in now. I know it sounds like a really long time, but it was being custom made to my exact measurements to hopefully save a lot of money and work on alterations later. But it's FINALLY here!
Jen and I got cleaned up, I threw my Vera Wang shoes and Swarovski earrings into the car, put the convertible top down, turned on the radio and we were on our way.
I rang the bell at the back door of the bridal salon and heard the loud buzz signaling us to enter. We walked down the hall and I saw it immediately. There it was, covered in a thick, plastic garment bag, hanging on a rack by the front desk.
My wedding gown.
Mine.
All mine.
My parents weren't there yet, but I left Jen to wait for them while I followed Dina, the store manager, into a fitting room and started to undress. While she took my gown out of the bag and off the hanger, I put on the earrings I had bought last week. I was supposed to return the others, but since they were just as beautiful as the ones I had chosen for myself, I came up with a better idea. I'd surprise my mom and give them to her! After all, I knew they'd look amazing with the spectacular dress she had bought for my wedding.
Dina unzipped my gown and held it so I could step into it. She shifted it a bit, then zipped it up for me. She helped me to slip on my shoes, then I stood up, looked in the mirror and just stared at my reflection in amazement. "It fits almost perfectly. Wow," Dina said. She was right. It was as if the dress had been made for me. Oh, wait...it had!
I opened the door and slowly walked out. Jen gasped with approval, my mom's smile covered her entire face, and my daddy's eyes started to tear as he walked over to hug me and give me a kiss on my shoulder. "Do you like it?" I asked. "I love it!" Jen said. "You look beautiful," my mom agreed. "It's very pretty," my dad started, "but don't you think it's a bit tight?" I giggled. "Oh, stop! It's supposed to be this way!" He tried again, "Maybe they should let it out just a little bit." "It's fine!" I insisted. Then my mom chimed in, "Can you sit down?" I rolled my eyes, walked over to a couch, made an attempt to bend my body into a sitting position, and laughed. "Who needs to sit anyway?" But they were right. "Ok, maybe it can be taken out a tiny bit."
The more I gazed at myself in the mirror, the more I felt like a bride and not a cancer patient. I held my hair up, then let it fall back down over my shoulders. I turned from side to side, then I looked over my shoulder so I could check out my butt. "Are you gonna wear it home?" my mom asked with a smirk.
As much as I would have loved to stay and stare at myself a little bit longer, Jen and I had plans to get to a movie, so I really needed to take the dress off. Dina came back to help me and I questioned her on the alterations, "What's the longest I can wait to have the dress fitted? I don't know what my body will look like after two rounds of chemo, so I don't want to do it too soon." Dina asked about my treatments and when I thought I'd be able to come in again. She said she would work with me and do whatever has to be done to accommodate my needs.
I got dressed and headed to the front desk to make my first fitting appointment. "Let me think. I start chemo next week. It's one week on, two weeks off, one week on. I guess I should try to get in right before my second round." I looked at the calendar on my phone. "How's August 7th?" I asked. "That works," Dina said as she wrote it in the appointment book.
I thanked everyone at Priscilla's for being so understanding and willing to work around my situation. Then Jen, my parents and I walked out into the summer heat, exchanged hugs and kisses and went our separate ways.
It's almost 1:00 AM. I have one more day of freedom before I'm sentenced to report to Sloan-Kettering every day for the rest of the summer. But you know damn well I'm going out with a bang! Tomorrow (or today) is my bridal shower. It's a day to forget about cancer and think about my wedding. I feel like wearing a sign that says, "No C-word today, please!" For just one day, I'd like to talk about dresses and cakes and music and flowers and happiness! And when my daytime fun is over, and all the guests leave, I get to kick up the excitement a few more notches at the Poison/Motley Crue concert later tonight!
I may be one day away from Hell, but nothing is gonna stop me from enjoying the next 24 hours!
This sucks.
Since we still had a few hours together today, I decided to take my boys to the pool. Jen, my college friend, and matron of honor, who had driven in from Massachusetts yesterday, helped me get everyone into their bathing suits and loaded into the car. Even though the doctors tell me I'm still not allowed in the pool, I needed to take today to soak up the sun. Once chemo starts, it'll be all shade and oversized hats for me.
When we arrived at the pool, Jen and the boys headed for the cool water while I baked on a lounge chair. Beads of sweat dripped down my forehead and glistened all over my body. What I wouldn't do for one little dip. I watched as Dylan jumped off the diving board, swam to the ladder, got out of the pool, circled back, and started the whole process over again. Then my eyes scanned the water until they found Justin, who had his arms wrapped around Jen's neck while he watched his brother splash into the deep end. It's my last healthy day with my babies and I can't even play with them.
This sucks.
I felt my phone vibrate and held it up to my face. I squinted in the bright sunlight until I could read the words my ex-husband had sent, "I'd like to pick them up at 2."I checked the time on the screen. 12:15. Hmmm...Not much time left, but I really didn't have a choice. It's his weekend. I let them swim a bit more, then ordered some lunch. They were on the playground at about 1:50 when Jen said, "Jim's here." Oh, did I mention my ex's name is Jim? Yeah, I went from Jim to Jimmi. Hey, at least I won't say the wrong name by accident!
Anyway...so Jim, who is habitually 15-30 minutes late at all times, arrived 10 minutes early on my last pre-chemo day with the kids. I barely had a chance to give them hugs, and he was hustling them out the door. "Hey!" I yelled. "Can I at least say goodbye?" Jim slowed down so Jen and I could catch up and walk with them to the parking lot. I hugged and kissed each one of them over and over again. "You know you can call me any time, right?" I asked them. They nodded. "And you can see me whenever I'm feeling up to it, ok?" They nodded again. "I love you," I choked on the tears. They threw their arms around me, "I love you too," they said in stereo. And then they were gone.
I walked into my house, which already seemed too quiet, and hit the play button on the blinking answering machine. "Hi, Suzanne, it's Rachel from Priscilla of Boston. I just want to tell you that your wedding gown came in today..." I didn't even listen to the rest of the message. I turned to Jen who was coming down the stairs and said, "My dress is in!" Her face resembled the excitement I was feeling as I picked up the phone to call my mom. "What are you doing later?" I asked her. "My dress is in! If I can get an appointment in a few hours, can you and Daddy meet us there?" She agreed and I dialed the number for Priscilla of Boston.
4:30! I'm finally going to put on my beautiful, perfect, gorgeous wedding gown at 4:30!
It seems like forever since I ordered the gown in October. Yes, I ordered my dress nine months ago and it's just coming in now. I know it sounds like a really long time, but it was being custom made to my exact measurements to hopefully save a lot of money and work on alterations later. But it's FINALLY here!
Jen and I got cleaned up, I threw my Vera Wang shoes and Swarovski earrings into the car, put the convertible top down, turned on the radio and we were on our way.
I rang the bell at the back door of the bridal salon and heard the loud buzz signaling us to enter. We walked down the hall and I saw it immediately. There it was, covered in a thick, plastic garment bag, hanging on a rack by the front desk.
My wedding gown.
Mine.
All mine.
My parents weren't there yet, but I left Jen to wait for them while I followed Dina, the store manager, into a fitting room and started to undress. While she took my gown out of the bag and off the hanger, I put on the earrings I had bought last week. I was supposed to return the others, but since they were just as beautiful as the ones I had chosen for myself, I came up with a better idea. I'd surprise my mom and give them to her! After all, I knew they'd look amazing with the spectacular dress she had bought for my wedding.
Dina unzipped my gown and held it so I could step into it. She shifted it a bit, then zipped it up for me. She helped me to slip on my shoes, then I stood up, looked in the mirror and just stared at my reflection in amazement. "It fits almost perfectly. Wow," Dina said. She was right. It was as if the dress had been made for me. Oh, wait...it had!
I opened the door and slowly walked out. Jen gasped with approval, my mom's smile covered her entire face, and my daddy's eyes started to tear as he walked over to hug me and give me a kiss on my shoulder. "Do you like it?" I asked. "I love it!" Jen said. "You look beautiful," my mom agreed. "It's very pretty," my dad started, "but don't you think it's a bit tight?" I giggled. "Oh, stop! It's supposed to be this way!" He tried again, "Maybe they should let it out just a little bit." "It's fine!" I insisted. Then my mom chimed in, "Can you sit down?" I rolled my eyes, walked over to a couch, made an attempt to bend my body into a sitting position, and laughed. "Who needs to sit anyway?" But they were right. "Ok, maybe it can be taken out a tiny bit."
The more I gazed at myself in the mirror, the more I felt like a bride and not a cancer patient. I held my hair up, then let it fall back down over my shoulders. I turned from side to side, then I looked over my shoulder so I could check out my butt. "Are you gonna wear it home?" my mom asked with a smirk.
As much as I would have loved to stay and stare at myself a little bit longer, Jen and I had plans to get to a movie, so I really needed to take the dress off. Dina came back to help me and I questioned her on the alterations, "What's the longest I can wait to have the dress fitted? I don't know what my body will look like after two rounds of chemo, so I don't want to do it too soon." Dina asked about my treatments and when I thought I'd be able to come in again. She said she would work with me and do whatever has to be done to accommodate my needs.
I got dressed and headed to the front desk to make my first fitting appointment. "Let me think. I start chemo next week. It's one week on, two weeks off, one week on. I guess I should try to get in right before my second round." I looked at the calendar on my phone. "How's August 7th?" I asked. "That works," Dina said as she wrote it in the appointment book.
I thanked everyone at Priscilla's for being so understanding and willing to work around my situation. Then Jen, my parents and I walked out into the summer heat, exchanged hugs and kisses and went our separate ways.
It's almost 1:00 AM. I have one more day of freedom before I'm sentenced to report to Sloan-Kettering every day for the rest of the summer. But you know damn well I'm going out with a bang! Tomorrow (or today) is my bridal shower. It's a day to forget about cancer and think about my wedding. I feel like wearing a sign that says, "No C-word today, please!" For just one day, I'd like to talk about dresses and cakes and music and flowers and happiness! And when my daytime fun is over, and all the guests leave, I get to kick up the excitement a few more notches at the Poison/Motley Crue concert later tonight!
I may be one day away from Hell, but nothing is gonna stop me from enjoying the next 24 hours!
Wednesday, July 13, 2011
Yes, That's My Final Answer
I've made a decision.
After over a week of deliberation and agonizing over the pros and cons of radiation, I've finally made a decision.
It's true, the side effects of the radiation scare the shit out of me...but so does dying. No, no one can guarantee that I'm going to die if I don't have radiation, and no one can guarantee I won't have horrible, long-term side effects if I do. That's the one thing I've learned for sure about this whole cancer thing.
There are no guarantees.
For the last week, I'd been flipping back and forth over which decision was best for me. The internal tug of war was draining every ounce of energy I had. I needed to come to a conclusion, and I needed to do it quickly.
Last night, after reading about a dozen horror stories about people who have been permanently damaged by radiation, I jumped up from my computer and yelled, "Oh, Hell no! I'm not doing it! Fuck that!" And the decision was made, just like that. But why did I still feel a nagging in my heart?
About an hour after my outburst, an e-mail arrived from my friend, Julie. Julie had questioned her friend, who is also a gynecology oncologist, to ask what his thoughts were about my treatment plan. I won't quote his response exactly, but the gist of it was pretty blunt. Small cell is treatable now. Do what the doctors say, because if it comes back, it won't be treatable again.
Talk about scaring the crap out of me!
So, basically, this guy is saying if I don't do the radiation I'm gonna die. And BAM! I was back to square one.
I woke up this morning and called my mom. I had sent her the radiation horror stories and the e-mail from Julie's friend late last night, and I wanted her opinion. "Truthfully, I don't know what you should do," she sighed. "I'm 51% leaning towards telling you not to do it, and 49% thinking you should. I'm also selfish, and I want to keep you around. But I also want you to be happy. If you have one of these awful side effects, will you be able to deal with it and live your life? Or will you curl up in a ball and be miserable?" I couldn't answer her. Why can't this be easy?
I headed out the door to meet my friend, Carrie, and her sister, Jennifer for lunch. I remembered that Lisa from Dr. Leitao's office had mentioned that she was going to have a woman who had gone through a hysterectomy and chemo and radiation contact me to tell me her experience. I hadn't heard from her yet, and I really wanted to speak to her. I also wanted to ask Lisa her opinion on my situation one more time to see if she'd give me the answer I was looking for. So I called Sloan-Kettering and left a message for Lisa to call me back.
Lunch with Carrie and Jennifer was a lot of fun, and took my mind off cancer for a little while. But then, because I really wanted their input, I started the radiation debate. "What would you do if you were me?" I asked them. After explaining everything I had read, both sisters agreed that they wouldn't risk doing the treatment. Maybe I swayed them with my negative attitude, or maybe they really felt strongly about the decision, but either way, they said, "Don't do it!"and I concurred.
Lunch was interrupted by a phone call from Lisa. I stepped outside so I could hear better, "Hi Lisa. I'm still really struggling over this decision. I don't know what to do." I expressed all of my concerns again. "Those are all very real possibilities," she agreed. "It's a hard decision and you need to do what you think is best. But not everyone has a bad experience. I finally got in touch with our patient, Jen, and she said you can call her to talk about her how she's doing after radiation." I asked Lisa to e-mail me Jen's number. Then I said, "A lot of the women online were talking about using radiation to shrink tumors. I don't have a tumor. Everything is gone. What's left to radiate?" Lisa paused for a minute to collect her thoughts, "You had that one lymph node with disease in it. That means there might be more." I was in fight mode, "But isn't that what the chemo is for?" Lisa was calm and understanding, "Yes. Chemo is supposed to stop the spread. The radiation is more like a clean-up of the area where there were cancer cells. It will take care of anything that might be left over that we can't see." I thought about that for a minute, then asked, "If it ends up coming back, I don't have a cervix anymore. Where does it go?" Without a thought, Lisa explained, "Small cell will usually go to the lung." My whole body shuttered. "How is that treated?" Lisa explained, "Sometimes with more chemo, sometimes with surgery. It depends." Ugh! The last thing I want is to go through any of this again.
I thanked Lisa and ended the call. My brain was spinning with more thoughts than it could process. Ok, she said they're going to do scans every three months for about five years. If it comes back, they'll catch it and treat it immediately. But what if it comes back, and by the time it's big enough to see on the scan, it's too late? What if it invades both lungs? What if it gets to my other organs? I don't want to die! Still, no one is guaranteeing that radiation will stop it. Lisa also reconfirmed that chemo is really the most important part. She said I'm not being stupid to question the radiation, but she also said they just want to do everything they can to make me healthy again.
I walked back into the restaurant and told Carrie and Jennifer about the phone call. "I still don't think I'm gonna do the radiation," I said. But that nagging feeling was still there.
I called my mom as I was driving home so I could rehash my thoughts for the millionth time. Back and forth and back and forth we went. "Look," I said, "if I were playing Blackjack and I had a 16 and the dealer was showing a 10, I'd take a hit. If you're gambling, you need to take chances and not always play it safe. Staying on a 16 is like doing everything the doctor suggests. It's safe. It may not be the best answer, but at least you won't lose right away. Hitting a 16 is risky. It's like taking a chance and not going the safe route. There are a lot of cards that can put you over the top and you might lose your hand. But if you win, it feels that much better. I've never been the type to follow the crowd. I've always played by my own rules. I like being different. Why can't I be the person to think outside the box? Why can't I be the test case who doesn't do what everyone says I should do?" My mom listened to my analogy, then added her thoughts, "I can't tell you what to do. I don't know what the right answer is. I know you want me to say do it or don't do it so you feel better about your decision. I know if you don't do it and the cancer comes back, you'll blame yourself. So, I'll take the blame. Don't do it. If something happens, blame me." No, no, no. "I'm not blaming you, Mom. This is MY decision. I'll be the one to live with the consequences."
I got home at about 2:45. I had a little under an hour before I needed to pick the boys up from camp, so I figured I'd give Jen, the patient Lisa referred me to, a quick call. I wasn't prepared for the conversation that would take place over the next 50 minutes.
Jen is a cervical cancer survivor. She didn't have small cell, but she did have a hysterectomy, chemo and radiation. She's just a few years older than I am, but was 37 at the time of her diagnosis. A year and a half after finishing treatments, this woman is full of so much life and positive energy, I was literally able to feel her strength through the phone. "Hi!" she chirped cheerily. "Ok, tell me what questions you have and what you're worried about with the radiation." I blurted out all of my fears about the horror stories I had read online. "Ok, wait," Jen said with authority. "I read all of that stuff too, but you have to assume that these people were doing radiation in like Ethiopia or something. The doctors at Sloan are so precise with every mark and the make sure to like you up in exactly the same spot each time. If they zap you in the wrong place, they'll know it and they'll adjust it. That stuff only happens to like 2% of the population, and it comes from being zapped over and over again in the wrong spot. And as far as thinking your vagina is going to fuse together, I could write a book called 'My Life in Stirrups.' They're gonna check you every week. They'll look in your hooha, and if they see ANYTHING unusual, they'll adjust the rays. I'm not saying things won't be different, and you'll go through a few months of complete Hell. But it gets better."
Wow. A real radiation advocate is on the phone.
"So, you don't have any long-term side effects?" She thought for a minute. "Yeah, I have to pee a lot more than before because my bladder shrunk a bit. And sometimes if I sneeze, I pee a little. But from what my friends tell me, that happens after you pop out a few kids anyway!" I couldn't help but giggle. She was so upbeat and the positive vibes were intense. "What about sex?" I asked without really wanting to hear the answer. "Oh, that scared the crap out of me too!" Jen admitted. "Who would want to go without sex for the rest of their lives? But don't worry. They give you the tools to make it better. It'll never be the same, but if you do what they say, you'll be fine." I mentioned the dilator. "Yeah," she laughed. "It's the cheapest piece of crap they could give you! When I saw it, they had to tell me to stop laughing long enough for them to explain what to do with it. I even asked them why it didn't come with batteries! Honestly, have your best friend buy you a nice sex toy. Anything will work. Use the moisturizers, too. All of that will help to keep the tissues pliable. And the more you have sex, the better!" I still wasn't convinced. "I just rescheduled our honeymoon for our one year anniversary," I explained. "I'd really hate to get to Bora Bora and have to tell him we won't be able to do any celebrating." Jen dismissed that thought in a hurry, "Forget it! In a year you'll be great! You'll be ready to go three months after treatments. It might take a little while to get used to it, but if you do what they tell you to do, it'll be ok. Oh! One long-term side effect I have is that now I need to use lube. But, so what? I spend $7 every two months and I'm good to go!" I really liked her.
I wanted to keep talking, but my eye was on the clock and I really needed to run so I would make it on time to pick the kids up from camp. I thanked Jen, we agreed to keep in touch, and I was out the door.
I hadn't seen my boys in a few days since they had been with their dad. Our arrangement is every other weekend and two days during the week. It's a lot of bouncing back and forth, but it give us each equal time with the kids, and they seem to be doing well with it. As I walked through the parking lot, I realized that this would be my last week to have my little boys sleep at my house. I'll be going to radiation every day, and chemo three days a week, every three weeks. I'll see them as much as I can when I'm feeling well, but it's not fair to them if they need to stay inside all summer because Mommy can't be in the sun, or Mommy is too tired to play, or Mommy is too sick. And if one of them wakes up sick in the middle of the night, I really can't be exposed to the germs. Jimmi hasn't ever dealt with sick kids, so I can't put him in that position. He'd be scared to death. So, I made the decision to let them sleep at their dad's house until my treatments are finished.
"Hi Mommy!" Justin said when he noticed me standing in the doorway. "Oh, hi Mom!" Dylan echoed. I smiled at the little one who shared my hazel eyes and freckles. "Let's go! We need to eat before music lessons!" I announced. They followed me to the car and Justin agreed to let Dylan choose what to have for dinner. Not surprised by his suggestion, I headed to Burger King to load them up with crap that I would normally never eat. But, hey, what the Hell? I'm starting chemo next week. I'm pretty sure that gives me carte blanche to do whatever I want right now. I let the kids place their orders and when the woman behind the counter asked, "Anything else?" I scanned the menu and added, "Yes, small onion rings, please." It wasn't like I was getting a giant Whopper meal, but it's more than I usually allow myself to eat at a fast food joint!
I set the tray on the table and spread out napkins in front of each of my boys. I placed their fries and onion rings on top of the napkins so the food wouldn't come in contact with the dirty table. I walked over to the soda fountain and filled up two cups with Sprite, and one with Diet Coke, then headed back to the table. Everyone was eating silently. Dylan was playing his Nintendo DS as Justin looked over his shoulder. I stared at the little images of me sitting across the table, and then it hit me like a lightning bolt.
I need to do the radiation.
I wasn't even thinking about it, but the decision became crystal clear. I can't let these beautiful boys grow up without a mom. Screw the side effects! I need to do everything I can to make sure I live to see them grow up. I want to see them graduate from high school, and college, and get married and have babies. I want to be a grandmother! My eyes started to tear up at the thoughts. Just then, I looked down and saw the blinking light on my phone. I had an e-mail from my mom. It said...
"Go with the radiation."
Wow. If I had been looking for a sign, here it was. At the same exact moment, in two different locations, without even speaking about it, my mom and I had come to the same conclusion about the dilemma that had been haunting us for days. That's it. That's the decision. I need to live. I need to be around for my boys.
My mind is made up.
No turning back now.
After over a week of deliberation and agonizing over the pros and cons of radiation, I've finally made a decision.
It's true, the side effects of the radiation scare the shit out of me...but so does dying. No, no one can guarantee that I'm going to die if I don't have radiation, and no one can guarantee I won't have horrible, long-term side effects if I do. That's the one thing I've learned for sure about this whole cancer thing.
There are no guarantees.
For the last week, I'd been flipping back and forth over which decision was best for me. The internal tug of war was draining every ounce of energy I had. I needed to come to a conclusion, and I needed to do it quickly.
Last night, after reading about a dozen horror stories about people who have been permanently damaged by radiation, I jumped up from my computer and yelled, "Oh, Hell no! I'm not doing it! Fuck that!" And the decision was made, just like that. But why did I still feel a nagging in my heart?
About an hour after my outburst, an e-mail arrived from my friend, Julie. Julie had questioned her friend, who is also a gynecology oncologist, to ask what his thoughts were about my treatment plan. I won't quote his response exactly, but the gist of it was pretty blunt. Small cell is treatable now. Do what the doctors say, because if it comes back, it won't be treatable again.
Talk about scaring the crap out of me!
So, basically, this guy is saying if I don't do the radiation I'm gonna die. And BAM! I was back to square one.
I woke up this morning and called my mom. I had sent her the radiation horror stories and the e-mail from Julie's friend late last night, and I wanted her opinion. "Truthfully, I don't know what you should do," she sighed. "I'm 51% leaning towards telling you not to do it, and 49% thinking you should. I'm also selfish, and I want to keep you around. But I also want you to be happy. If you have one of these awful side effects, will you be able to deal with it and live your life? Or will you curl up in a ball and be miserable?" I couldn't answer her. Why can't this be easy?
I headed out the door to meet my friend, Carrie, and her sister, Jennifer for lunch. I remembered that Lisa from Dr. Leitao's office had mentioned that she was going to have a woman who had gone through a hysterectomy and chemo and radiation contact me to tell me her experience. I hadn't heard from her yet, and I really wanted to speak to her. I also wanted to ask Lisa her opinion on my situation one more time to see if she'd give me the answer I was looking for. So I called Sloan-Kettering and left a message for Lisa to call me back.
Lunch with Carrie and Jennifer was a lot of fun, and took my mind off cancer for a little while. But then, because I really wanted their input, I started the radiation debate. "What would you do if you were me?" I asked them. After explaining everything I had read, both sisters agreed that they wouldn't risk doing the treatment. Maybe I swayed them with my negative attitude, or maybe they really felt strongly about the decision, but either way, they said, "Don't do it!"and I concurred.
Lunch was interrupted by a phone call from Lisa. I stepped outside so I could hear better, "Hi Lisa. I'm still really struggling over this decision. I don't know what to do." I expressed all of my concerns again. "Those are all very real possibilities," she agreed. "It's a hard decision and you need to do what you think is best. But not everyone has a bad experience. I finally got in touch with our patient, Jen, and she said you can call her to talk about her how she's doing after radiation." I asked Lisa to e-mail me Jen's number. Then I said, "A lot of the women online were talking about using radiation to shrink tumors. I don't have a tumor. Everything is gone. What's left to radiate?" Lisa paused for a minute to collect her thoughts, "You had that one lymph node with disease in it. That means there might be more." I was in fight mode, "But isn't that what the chemo is for?" Lisa was calm and understanding, "Yes. Chemo is supposed to stop the spread. The radiation is more like a clean-up of the area where there were cancer cells. It will take care of anything that might be left over that we can't see." I thought about that for a minute, then asked, "If it ends up coming back, I don't have a cervix anymore. Where does it go?" Without a thought, Lisa explained, "Small cell will usually go to the lung." My whole body shuttered. "How is that treated?" Lisa explained, "Sometimes with more chemo, sometimes with surgery. It depends." Ugh! The last thing I want is to go through any of this again.
I thanked Lisa and ended the call. My brain was spinning with more thoughts than it could process. Ok, she said they're going to do scans every three months for about five years. If it comes back, they'll catch it and treat it immediately. But what if it comes back, and by the time it's big enough to see on the scan, it's too late? What if it invades both lungs? What if it gets to my other organs? I don't want to die! Still, no one is guaranteeing that radiation will stop it. Lisa also reconfirmed that chemo is really the most important part. She said I'm not being stupid to question the radiation, but she also said they just want to do everything they can to make me healthy again.
I walked back into the restaurant and told Carrie and Jennifer about the phone call. "I still don't think I'm gonna do the radiation," I said. But that nagging feeling was still there.
I called my mom as I was driving home so I could rehash my thoughts for the millionth time. Back and forth and back and forth we went. "Look," I said, "if I were playing Blackjack and I had a 16 and the dealer was showing a 10, I'd take a hit. If you're gambling, you need to take chances and not always play it safe. Staying on a 16 is like doing everything the doctor suggests. It's safe. It may not be the best answer, but at least you won't lose right away. Hitting a 16 is risky. It's like taking a chance and not going the safe route. There are a lot of cards that can put you over the top and you might lose your hand. But if you win, it feels that much better. I've never been the type to follow the crowd. I've always played by my own rules. I like being different. Why can't I be the person to think outside the box? Why can't I be the test case who doesn't do what everyone says I should do?" My mom listened to my analogy, then added her thoughts, "I can't tell you what to do. I don't know what the right answer is. I know you want me to say do it or don't do it so you feel better about your decision. I know if you don't do it and the cancer comes back, you'll blame yourself. So, I'll take the blame. Don't do it. If something happens, blame me." No, no, no. "I'm not blaming you, Mom. This is MY decision. I'll be the one to live with the consequences."
I got home at about 2:45. I had a little under an hour before I needed to pick the boys up from camp, so I figured I'd give Jen, the patient Lisa referred me to, a quick call. I wasn't prepared for the conversation that would take place over the next 50 minutes.
Jen is a cervical cancer survivor. She didn't have small cell, but she did have a hysterectomy, chemo and radiation. She's just a few years older than I am, but was 37 at the time of her diagnosis. A year and a half after finishing treatments, this woman is full of so much life and positive energy, I was literally able to feel her strength through the phone. "Hi!" she chirped cheerily. "Ok, tell me what questions you have and what you're worried about with the radiation." I blurted out all of my fears about the horror stories I had read online. "Ok, wait," Jen said with authority. "I read all of that stuff too, but you have to assume that these people were doing radiation in like Ethiopia or something. The doctors at Sloan are so precise with every mark and the make sure to like you up in exactly the same spot each time. If they zap you in the wrong place, they'll know it and they'll adjust it. That stuff only happens to like 2% of the population, and it comes from being zapped over and over again in the wrong spot. And as far as thinking your vagina is going to fuse together, I could write a book called 'My Life in Stirrups.' They're gonna check you every week. They'll look in your hooha, and if they see ANYTHING unusual, they'll adjust the rays. I'm not saying things won't be different, and you'll go through a few months of complete Hell. But it gets better."
Wow. A real radiation advocate is on the phone.
"So, you don't have any long-term side effects?" She thought for a minute. "Yeah, I have to pee a lot more than before because my bladder shrunk a bit. And sometimes if I sneeze, I pee a little. But from what my friends tell me, that happens after you pop out a few kids anyway!" I couldn't help but giggle. She was so upbeat and the positive vibes were intense. "What about sex?" I asked without really wanting to hear the answer. "Oh, that scared the crap out of me too!" Jen admitted. "Who would want to go without sex for the rest of their lives? But don't worry. They give you the tools to make it better. It'll never be the same, but if you do what they say, you'll be fine." I mentioned the dilator. "Yeah," she laughed. "It's the cheapest piece of crap they could give you! When I saw it, they had to tell me to stop laughing long enough for them to explain what to do with it. I even asked them why it didn't come with batteries! Honestly, have your best friend buy you a nice sex toy. Anything will work. Use the moisturizers, too. All of that will help to keep the tissues pliable. And the more you have sex, the better!" I still wasn't convinced. "I just rescheduled our honeymoon for our one year anniversary," I explained. "I'd really hate to get to Bora Bora and have to tell him we won't be able to do any celebrating." Jen dismissed that thought in a hurry, "Forget it! In a year you'll be great! You'll be ready to go three months after treatments. It might take a little while to get used to it, but if you do what they tell you to do, it'll be ok. Oh! One long-term side effect I have is that now I need to use lube. But, so what? I spend $7 every two months and I'm good to go!" I really liked her.
I wanted to keep talking, but my eye was on the clock and I really needed to run so I would make it on time to pick the kids up from camp. I thanked Jen, we agreed to keep in touch, and I was out the door.
I hadn't seen my boys in a few days since they had been with their dad. Our arrangement is every other weekend and two days during the week. It's a lot of bouncing back and forth, but it give us each equal time with the kids, and they seem to be doing well with it. As I walked through the parking lot, I realized that this would be my last week to have my little boys sleep at my house. I'll be going to radiation every day, and chemo three days a week, every three weeks. I'll see them as much as I can when I'm feeling well, but it's not fair to them if they need to stay inside all summer because Mommy can't be in the sun, or Mommy is too tired to play, or Mommy is too sick. And if one of them wakes up sick in the middle of the night, I really can't be exposed to the germs. Jimmi hasn't ever dealt with sick kids, so I can't put him in that position. He'd be scared to death. So, I made the decision to let them sleep at their dad's house until my treatments are finished.
"Hi Mommy!" Justin said when he noticed me standing in the doorway. "Oh, hi Mom!" Dylan echoed. I smiled at the little one who shared my hazel eyes and freckles. "Let's go! We need to eat before music lessons!" I announced. They followed me to the car and Justin agreed to let Dylan choose what to have for dinner. Not surprised by his suggestion, I headed to Burger King to load them up with crap that I would normally never eat. But, hey, what the Hell? I'm starting chemo next week. I'm pretty sure that gives me carte blanche to do whatever I want right now. I let the kids place their orders and when the woman behind the counter asked, "Anything else?" I scanned the menu and added, "Yes, small onion rings, please." It wasn't like I was getting a giant Whopper meal, but it's more than I usually allow myself to eat at a fast food joint!
I set the tray on the table and spread out napkins in front of each of my boys. I placed their fries and onion rings on top of the napkins so the food wouldn't come in contact with the dirty table. I walked over to the soda fountain and filled up two cups with Sprite, and one with Diet Coke, then headed back to the table. Everyone was eating silently. Dylan was playing his Nintendo DS as Justin looked over his shoulder. I stared at the little images of me sitting across the table, and then it hit me like a lightning bolt.
I need to do the radiation.
I wasn't even thinking about it, but the decision became crystal clear. I can't let these beautiful boys grow up without a mom. Screw the side effects! I need to do everything I can to make sure I live to see them grow up. I want to see them graduate from high school, and college, and get married and have babies. I want to be a grandmother! My eyes started to tear up at the thoughts. Just then, I looked down and saw the blinking light on my phone. I had an e-mail from my mom. It said...
"Go with the radiation."
Wow. If I had been looking for a sign, here it was. At the same exact moment, in two different locations, without even speaking about it, my mom and I had come to the same conclusion about the dilemma that had been haunting us for days. That's it. That's the decision. I need to live. I need to be around for my boys.
My mind is made up.
No turning back now.
Tuesday, July 12, 2011
Bride to Be...Or Not to Be
This sucks.
In the last few days, I've purchased earrings and a hair accessory to wear with my gorgeous dress at my perfectly planned wedding on a beautiful day in September.
But I can't seem to force myself to be excited.
On a whim, I walked into Swarovski Crystal last night looking for earrings. I was originally thinking diamond chandeliers would be best, but then I remembered that the beading on the dress is actually made by Swarovski, so why not take a look there?
I was greeted by the very friendly manager, who asked me if I was looking for anything in particular. "Yes," I said. "I need earrings to go with my wedding dress." Her eyes lit up and a huge smile crept over her face, "Congratulations!" she exclaimed. "When's the wedding?" I wanted so badly to share her joy, but I couldn't. I tried to fake excitement. With all the acting lessons I took as a child, it shouldn't have been too hard. Shouldn't have been; but it was. My mouth turned up a bit, but my eyes reflected the sadness in my heart. "September 3rd," I responded with little emotion. I'm not sure if she noticed my dismal attitude or not, but she went about her business showing me a variety of different earrings that might work for me. I ended up taking two pairs with me. "Try them both on with the dress, and return the ones you don't want," the manager suggested. Ok, deal.
I walked out of the store with my purchases in hand, feeling less than elated. One more thing to check off the list. One more this to make me wonder if I'll even have a wedding. One more thing to make me anxious and depressed.
It's not supposed to be this way!!
I woke up this morning and got ready for my day. I was meeting my friend, Kris, at Model Bride in Chatham to look for a hair accessory - or wig accessory - for the big day. But before I left the house, a thought invaded my head. I wonder if my hair system from Joseph Paris is ready? What if I lose my hair, and I have nothing to replace it? I picked up the phone and dialed the custom hair piece salon.
"Hi, it's Suzanne Paragano. I'm starting chemo next week, so I just wanted to make sure my hair system is ready." I heard some fingernails tapping on a computer keyboard and then, "Yes, Suzanne, you're all set!" I tried to sound cheery, "Ok, then I guess I'll call you when my hair falls out!"
Well, that was awkward. Ok, off to the bridal accessory shop.
I sat in my convertible with the top down, parked outside the shop while I waited for Kris. The dilemma of whether or not to go through with the radiation danced around my brain. Neither answer works for me. All of the cancer doctors tell me to do it. Most of my friends say don't do it. My mom and I flipped a coin. The coin said not to do it...two out of three times!
I've recently joined a small cell cervical cancer Facebook page. The women have been so supportive and helpful, and most of them have had chemo and radiation. Some have had both internal and external radiation. Some have had a hysterectomy, some have gone straight to treatments. But, no matter what they've done, there are a lot of incidences of recurrence in other parts of the body - mostly in the liver, lungs and ribs. Talk about scaring the shit out of me! So what exactly did the radiation do to stop the spread? Then, on the other hand, there are other women who may not have had the cancer come back, but have had such severe damage from the radiation that they've had their bladders and parts of their intestines removed, and are now living with colostomy and urostomy bags. Some have lesions on their bladders that were caused by the radiation. They obviously can't radiate again, and chemo doesn't work in that case. Surgery is the only option. No one warned me about those side effects. All I've heard is, "It will shrink your vaginal canal, but using a dilator and internal moisturizer and lubricant should help." So, if I don't do the radiation and the cancer comes back, I'll kick myself for not doing it. But if I do it, and I end up with one of the life-altering side effects, but no cancer, what kind of life will I have? There is no right answer here. And I only have a few more days to decide.
Just when I was about to go nuts over this decision for the 100th time this week, Kris pulled up behind me. We walked into Model Bride and the vision of 30 different kinds of white shoes and 100 sparkling hair and body decorations greeted us. Two sales associates appeared from the back room and offered to help us find what we were looking for. "I need something to wear in my hair at my wedding," I said without a smile. Not surprisingly, both of them broke into girly giddiness at my request, and started pulling out options for me. "What exactly are you looking for?" the tall, blonde asked. "I don't want a veil and I don't want anything big and gaudy." I showed them a picture of my dress, and they both let out a few oohs and ahhs, then continued to look for the perfect compliment for my hair.
As they searched, I went back to my car to grab the earrings I had bought the night before so we could get an idea of what might look best. As I walked back in, a plethora of sparkle and glitz was thrown at me for approval. I tried a few looks in my newly darkened hair, and the manager asked a very reasonable question that threw me for a loop. "Do you have someone to do your hair and makeup yet? We offer that as a service if you want to come in for a trial." It was as if something had swooped into the room and sucked the wind out of me. Hair. Will I have hair? Makeup. Will it be enough to cover up the effects of the chemo on my complexion?
"Do they work with wigs?" I questioned with a serious tone. The poor girl looked stumped and speechless, so I continued, "I'll be starting chemo next week, so we'll either be working with clip in extensions or a full wig." She tried not to pity me, and she did a pretty good job of acting like my request wasn't unusual. "Our stylists are professionals. They can work with anything you need."
I continued to try on different accessories until I found one I really loved. As the manager and Kris helped me position it on my head, Kris very innocently exclaimed, "It's hard to do because you just have so much hair!" Then she caught herself, "Shit. I didn't mean that." I nodded and tried not to let it bother me. I know she didn't say it maliciously. The truth is, I do have a lot of hair. I can't expect people to walk on eggshells around me at all times. She didn't do anything wrong. I need to stop being so sensitive!
I decided on a beautiful, crystal and beaded band I thought would go well with my dress. I took a card and brochure explaining the hair and makeup packages the shop offered, and we were on our way.
I drove home with the top closed because the heat was unbearable. I was also expecting a call back from two different doctors, and it would be easier to hear them without the noise of the trucks passing by and the wind blowing loudly on my face. I had called my endocrinologist, who diagnosed my thyroid cancer in 1996, to ask his opinion on the radiation for my current condition. I had also left a message for Dr. Carter, the sex therapist I spoke to at Sloan-Kettering last month, to ask if she would contact some of her patients who had been through a hysterectomy and radiation to see if they'd call me to discuss their experiences. But neither of them called me back.
That was almost four hours ago.
And here I sit, still waiting for the phone to ring. My time is running out. I need to make a decision, and I need to make it quickly. I want my mind to be at peace with whatever choice I make, but it's not looking like there's any way for that to happen. Hindsight will be the only determination of whether or not the choice I make right now is correct. It's not fair. Who has the crystal ball? Anyone? I really need it now. Wait! My kids have a Magic 8 Ball. I'm gonna go look for it right now! Hang on...
"Outlook not so good."
Interesting. How should I take that? My question was, "Should I do the radiation." The answer was, "Outlook not so good." Does that mean I shouldn't do it? Or is that just a generalization about my entire situation? I don't like that answer. It's confusing. Asking again. Hold please.
"Outlook good."
Make up your mind, Magic 8 Ball! I asked the same question twice and got completely contradicting answers! But I guess that makes sense, doesn't it? It just proves that no one has the right answer. No one can tell me what will be best. Only I can choose what I want done to my body, and then I need to prepare myself to live with the consequences...
Whatever they may be.
In the last few days, I've purchased earrings and a hair accessory to wear with my gorgeous dress at my perfectly planned wedding on a beautiful day in September.
But I can't seem to force myself to be excited.
On a whim, I walked into Swarovski Crystal last night looking for earrings. I was originally thinking diamond chandeliers would be best, but then I remembered that the beading on the dress is actually made by Swarovski, so why not take a look there?
I was greeted by the very friendly manager, who asked me if I was looking for anything in particular. "Yes," I said. "I need earrings to go with my wedding dress." Her eyes lit up and a huge smile crept over her face, "Congratulations!" she exclaimed. "When's the wedding?" I wanted so badly to share her joy, but I couldn't. I tried to fake excitement. With all the acting lessons I took as a child, it shouldn't have been too hard. Shouldn't have been; but it was. My mouth turned up a bit, but my eyes reflected the sadness in my heart. "September 3rd," I responded with little emotion. I'm not sure if she noticed my dismal attitude or not, but she went about her business showing me a variety of different earrings that might work for me. I ended up taking two pairs with me. "Try them both on with the dress, and return the ones you don't want," the manager suggested. Ok, deal.
I walked out of the store with my purchases in hand, feeling less than elated. One more thing to check off the list. One more this to make me wonder if I'll even have a wedding. One more thing to make me anxious and depressed.
It's not supposed to be this way!!
I woke up this morning and got ready for my day. I was meeting my friend, Kris, at Model Bride in Chatham to look for a hair accessory - or wig accessory - for the big day. But before I left the house, a thought invaded my head. I wonder if my hair system from Joseph Paris is ready? What if I lose my hair, and I have nothing to replace it? I picked up the phone and dialed the custom hair piece salon.
"Hi, it's Suzanne Paragano. I'm starting chemo next week, so I just wanted to make sure my hair system is ready." I heard some fingernails tapping on a computer keyboard and then, "Yes, Suzanne, you're all set!" I tried to sound cheery, "Ok, then I guess I'll call you when my hair falls out!"
Well, that was awkward. Ok, off to the bridal accessory shop.
I sat in my convertible with the top down, parked outside the shop while I waited for Kris. The dilemma of whether or not to go through with the radiation danced around my brain. Neither answer works for me. All of the cancer doctors tell me to do it. Most of my friends say don't do it. My mom and I flipped a coin. The coin said not to do it...two out of three times!
I've recently joined a small cell cervical cancer Facebook page. The women have been so supportive and helpful, and most of them have had chemo and radiation. Some have had both internal and external radiation. Some have had a hysterectomy, some have gone straight to treatments. But, no matter what they've done, there are a lot of incidences of recurrence in other parts of the body - mostly in the liver, lungs and ribs. Talk about scaring the shit out of me! So what exactly did the radiation do to stop the spread? Then, on the other hand, there are other women who may not have had the cancer come back, but have had such severe damage from the radiation that they've had their bladders and parts of their intestines removed, and are now living with colostomy and urostomy bags. Some have lesions on their bladders that were caused by the radiation. They obviously can't radiate again, and chemo doesn't work in that case. Surgery is the only option. No one warned me about those side effects. All I've heard is, "It will shrink your vaginal canal, but using a dilator and internal moisturizer and lubricant should help." So, if I don't do the radiation and the cancer comes back, I'll kick myself for not doing it. But if I do it, and I end up with one of the life-altering side effects, but no cancer, what kind of life will I have? There is no right answer here. And I only have a few more days to decide.
Just when I was about to go nuts over this decision for the 100th time this week, Kris pulled up behind me. We walked into Model Bride and the vision of 30 different kinds of white shoes and 100 sparkling hair and body decorations greeted us. Two sales associates appeared from the back room and offered to help us find what we were looking for. "I need something to wear in my hair at my wedding," I said without a smile. Not surprisingly, both of them broke into girly giddiness at my request, and started pulling out options for me. "What exactly are you looking for?" the tall, blonde asked. "I don't want a veil and I don't want anything big and gaudy." I showed them a picture of my dress, and they both let out a few oohs and ahhs, then continued to look for the perfect compliment for my hair.
As they searched, I went back to my car to grab the earrings I had bought the night before so we could get an idea of what might look best. As I walked back in, a plethora of sparkle and glitz was thrown at me for approval. I tried a few looks in my newly darkened hair, and the manager asked a very reasonable question that threw me for a loop. "Do you have someone to do your hair and makeup yet? We offer that as a service if you want to come in for a trial." It was as if something had swooped into the room and sucked the wind out of me. Hair. Will I have hair? Makeup. Will it be enough to cover up the effects of the chemo on my complexion?
"Do they work with wigs?" I questioned with a serious tone. The poor girl looked stumped and speechless, so I continued, "I'll be starting chemo next week, so we'll either be working with clip in extensions or a full wig." She tried not to pity me, and she did a pretty good job of acting like my request wasn't unusual. "Our stylists are professionals. They can work with anything you need."
I continued to try on different accessories until I found one I really loved. As the manager and Kris helped me position it on my head, Kris very innocently exclaimed, "It's hard to do because you just have so much hair!" Then she caught herself, "Shit. I didn't mean that." I nodded and tried not to let it bother me. I know she didn't say it maliciously. The truth is, I do have a lot of hair. I can't expect people to walk on eggshells around me at all times. She didn't do anything wrong. I need to stop being so sensitive!
I decided on a beautiful, crystal and beaded band I thought would go well with my dress. I took a card and brochure explaining the hair and makeup packages the shop offered, and we were on our way.
I drove home with the top closed because the heat was unbearable. I was also expecting a call back from two different doctors, and it would be easier to hear them without the noise of the trucks passing by and the wind blowing loudly on my face. I had called my endocrinologist, who diagnosed my thyroid cancer in 1996, to ask his opinion on the radiation for my current condition. I had also left a message for Dr. Carter, the sex therapist I spoke to at Sloan-Kettering last month, to ask if she would contact some of her patients who had been through a hysterectomy and radiation to see if they'd call me to discuss their experiences. But neither of them called me back.
That was almost four hours ago.
And here I sit, still waiting for the phone to ring. My time is running out. I need to make a decision, and I need to make it quickly. I want my mind to be at peace with whatever choice I make, but it's not looking like there's any way for that to happen. Hindsight will be the only determination of whether or not the choice I make right now is correct. It's not fair. Who has the crystal ball? Anyone? I really need it now. Wait! My kids have a Magic 8 Ball. I'm gonna go look for it right now! Hang on...
"Outlook not so good."
Interesting. How should I take that? My question was, "Should I do the radiation." The answer was, "Outlook not so good." Does that mean I shouldn't do it? Or is that just a generalization about my entire situation? I don't like that answer. It's confusing. Asking again. Hold please.
"Outlook good."
Make up your mind, Magic 8 Ball! I asked the same question twice and got completely contradicting answers! But I guess that makes sense, doesn't it? It just proves that no one has the right answer. No one can tell me what will be best. Only I can choose what I want done to my body, and then I need to prepare myself to live with the consequences...
Whatever they may be.
Friday, July 8, 2011
Decisions
Well, I'm finally being given a choice in my cancer treatment. I'm finally allowed to decide what I want. But now I have a new problem.
I don't know what I want.
Or maybe it's better to say that I don't know what's best for me. I've left everything in the doctors' hands until this point. I've done whatever they've told me to do. I've followed all of their instructions. I've suffered through every scan, test and surgery they've suggested. I've questioned them and accepted their answers, whether I've agreed with them or not.
But now I'm in control for the first time.
I finally had my post-surgery follow up with Dr. Leitao today. I was amped up after my discussion with the biochemist yesterday, and walked into Sloan-Kettering with my fighting gloves in my back pocket. I figured I'd tell Dr. Leitao that I wanted to take supplements to help with the chemo and I wanted to skip the radiation, then he'd tell me I'm crazy, I'd put up a little fight, get tired and back down. But that's not the way it happened.
Surprisingly, I was called into Dr. Leitao's office on time for my 1:00 appointment. The nurse - not Lisa - took my vitals and asked a few questions. Dr. Leitao came in shortly, and I'm pretty sure he expected this to be a quick in and out visit. He didn't know I was armed with questions that would force him to stay until I was satisfied.
He complimented my newly darkened hair, checked my incisions, asked me how I was feeling and started to head for the door. "Wait!" I called after him. "Can you go over the pathology again? Dr. Gorsky has such a thick accent, so I want to make sure I understood what she was saying." He turned around and started to speak, "Well, we definitely did the right surgery for the cancer you have. It's definitely small cell and it was in the cervix and the parametria, which is that area around the cervix. It was also in one of the nodes, so I recommend you don't wait too long to start treatment. We got clean margins..." That's what I wanted to hear. I didn't listen to the rest of the sentence, but jumped in with, "So, if you got clean margins, you don't think there's anything left there, right?" He answered, "No, we didn't see anything, but it might be in one of the other nodes." I put on my boxing gloves, "Ok, so the nodes are treated with chemo, because it works systemically, right? Radiation treats a localized area. Since you think you got it all, and there were clean margins in the pathology, is there really a need for the radiation? Isn't it overkill?"
Dr. Leitao stared at me with surprise. I continued, "I'm not arguing with you about the chemo. I understand why I need to do that. But not the radiation. I've been reading and talking to people on a small cell cervical cancer site on Facebook, and the horror stories about radiation are awful. With chemo, there are terrible side effects, but once the chemo is done, they go away. My hair will fall out, but my hair will grow back. The side effects of radiation are permanent. It will shrink my vagina and make sex uncomfortable. I don't want to start a marriage like that. Plus, it could lead to bladder and intestinal damage. What if I say I don't want to do it?"
Dr. Leitao seemed a bit taken aback by my plea. He chose his words carefully and said, "I don't disagree with your concerns. You're right, radiation isn't fun. It's rare that you'd have any serious damage, but it's possible. I can't advise you not to do it because this is how we treat your type of cancer, but I see what you're saying. The problem is, there isn't enough research that's been done on small cell cervical cancer. It's too rare. If you had regular, garden variety, cervical cancer, the treatment that is most successful is radiation. I would insist on it. But the small cell cancer is tricky. It responds best to the platin-based chemotherapy. That's the really important part that you have to do. We just do the radiation on top of it because it's like hitting it with two guns instead of one."
I was shocked. It almost seemed like he thought I was right. He didn't come out and say it, and I could see that he didn't really know what answer to give me because the research isn't there to support him either way. There was definite concern in Dr. Leitao's eyes, and he was torn between letting me make my own decision and doing what was best for my health. The dilemma came from the fact that there weren't even percentages he could give me of women who chose one treatment over both. There just aren't enough people in the world with this type of cancer.
I changed gears for a minute. "On another note, I saw a biochemist yesterday. He gave me a bunch of supplements to take during chemo to help boost my immune system. I brought the list, if you want to see it. Dr. Gorsky was quick to tell me not to take anything, but I want to know what you think." He didn't take the list, but quickly responded with, "I won't know what any of those things are, but I don't have a problem with you taking them if you check them out on the Sloan-Kettering website in the Integrative Medicine section. Type in each name and see what's written about them. If they're ok, go ahead and take them. Can't hurt."
Ok, that was easier than I thought. Back to the radiation discussion.
"So, back to the radiation. I don't know what to do. Can I choose not to do it?" Dr. Leitao shrugged and said, "You can choose to walk out of here and never come back. We can't force you to do anything you don't want to do. We can only tell you what we think is best for your care and hope you take our advice." I asked again, "Do you think I need radiation on top of the chemo?" I could see the poor guy was struggling with the right answer, "As I said before, I can see where you're coming from. The chemo is most important. We don't really know if the radiation is necessary, but with an aggressive cancer like this, we suggest you do it all."
We spoke for a few more minutes without coming to a conclusion, then Dr. Leitao left to see another patient, and my mom, Jimmi and I stayed to talk to Lisa, who had joined us midway through the discussion.
"So, what would you do if it were you?" I asked Lisa. "I knew you were gonna do that to me," she smiled. "I don't know. It's so hard. I know you're young and this really sucks, but you have kids. I would be thinking about my kids and I'd want to be around for them."
Jimmi opened his mouth, "How often will she be checked after everything is done?"
"Every three months. She'll have scans of the pelvis, belly and lungs to make sure everything is clean."
Jimmi spoke again...or maybe it was my mom, "So if she chooses not to do the radiation now, then something pops up on one of those scans, can you do it at that point?"
Lisa answered, "Yes, then she wouldn't have a choice. And depending on what it is, they might suggest chemo again. But if she has radiation now, and something comes back in the same area, she can't have radiation again. It's a one time deal in the same area."
My mom asked, "So if she has radiation now, and then it comes back, how will they treat it?"
"With more chemo or surgery, if possible," Lisa explained.
I wasn't getting a definitive answer from anyone. Yes, I want to be around for my kids. But if the purpose of chemo is to kill stray cancer cells, shouldn't that be enough? If there was anything left over that they could see, I'd understand the radiation, but there isn't. Should I take my chances and opt out of the radiation? Should I play it safe and do it now, then risk further complications from the treatment?
I've been begging to have a choice for so long. Now I finally have one, and I can't figure out what I should do.
If I skip the radiation now, then the cancer comes back, I'll kick myself. But if I do the radiation now and it causes me to lose my bladder or never have sex again, I'll be angry for the rest of my life. But at least I'll have a life. But what if the chemo is enough to have a life? How do I make this decision? I can't even look at statistics, because there aren't any!
Stupid, stupid, stupid, stupid cancer!
How do I decide what's best for me? Who can give me the answers? What if I make the wrong decision? What if that decision kills me?
I'm open to suggestions.
I don't know what I want.
Or maybe it's better to say that I don't know what's best for me. I've left everything in the doctors' hands until this point. I've done whatever they've told me to do. I've followed all of their instructions. I've suffered through every scan, test and surgery they've suggested. I've questioned them and accepted their answers, whether I've agreed with them or not.
But now I'm in control for the first time.
I finally had my post-surgery follow up with Dr. Leitao today. I was amped up after my discussion with the biochemist yesterday, and walked into Sloan-Kettering with my fighting gloves in my back pocket. I figured I'd tell Dr. Leitao that I wanted to take supplements to help with the chemo and I wanted to skip the radiation, then he'd tell me I'm crazy, I'd put up a little fight, get tired and back down. But that's not the way it happened.
Surprisingly, I was called into Dr. Leitao's office on time for my 1:00 appointment. The nurse - not Lisa - took my vitals and asked a few questions. Dr. Leitao came in shortly, and I'm pretty sure he expected this to be a quick in and out visit. He didn't know I was armed with questions that would force him to stay until I was satisfied.
He complimented my newly darkened hair, checked my incisions, asked me how I was feeling and started to head for the door. "Wait!" I called after him. "Can you go over the pathology again? Dr. Gorsky has such a thick accent, so I want to make sure I understood what she was saying." He turned around and started to speak, "Well, we definitely did the right surgery for the cancer you have. It's definitely small cell and it was in the cervix and the parametria, which is that area around the cervix. It was also in one of the nodes, so I recommend you don't wait too long to start treatment. We got clean margins..." That's what I wanted to hear. I didn't listen to the rest of the sentence, but jumped in with, "So, if you got clean margins, you don't think there's anything left there, right?" He answered, "No, we didn't see anything, but it might be in one of the other nodes." I put on my boxing gloves, "Ok, so the nodes are treated with chemo, because it works systemically, right? Radiation treats a localized area. Since you think you got it all, and there were clean margins in the pathology, is there really a need for the radiation? Isn't it overkill?"
Dr. Leitao stared at me with surprise. I continued, "I'm not arguing with you about the chemo. I understand why I need to do that. But not the radiation. I've been reading and talking to people on a small cell cervical cancer site on Facebook, and the horror stories about radiation are awful. With chemo, there are terrible side effects, but once the chemo is done, they go away. My hair will fall out, but my hair will grow back. The side effects of radiation are permanent. It will shrink my vagina and make sex uncomfortable. I don't want to start a marriage like that. Plus, it could lead to bladder and intestinal damage. What if I say I don't want to do it?"
Dr. Leitao seemed a bit taken aback by my plea. He chose his words carefully and said, "I don't disagree with your concerns. You're right, radiation isn't fun. It's rare that you'd have any serious damage, but it's possible. I can't advise you not to do it because this is how we treat your type of cancer, but I see what you're saying. The problem is, there isn't enough research that's been done on small cell cervical cancer. It's too rare. If you had regular, garden variety, cervical cancer, the treatment that is most successful is radiation. I would insist on it. But the small cell cancer is tricky. It responds best to the platin-based chemotherapy. That's the really important part that you have to do. We just do the radiation on top of it because it's like hitting it with two guns instead of one."
I was shocked. It almost seemed like he thought I was right. He didn't come out and say it, and I could see that he didn't really know what answer to give me because the research isn't there to support him either way. There was definite concern in Dr. Leitao's eyes, and he was torn between letting me make my own decision and doing what was best for my health. The dilemma came from the fact that there weren't even percentages he could give me of women who chose one treatment over both. There just aren't enough people in the world with this type of cancer.
I changed gears for a minute. "On another note, I saw a biochemist yesterday. He gave me a bunch of supplements to take during chemo to help boost my immune system. I brought the list, if you want to see it. Dr. Gorsky was quick to tell me not to take anything, but I want to know what you think." He didn't take the list, but quickly responded with, "I won't know what any of those things are, but I don't have a problem with you taking them if you check them out on the Sloan-Kettering website in the Integrative Medicine section. Type in each name and see what's written about them. If they're ok, go ahead and take them. Can't hurt."
Ok, that was easier than I thought. Back to the radiation discussion.
"So, back to the radiation. I don't know what to do. Can I choose not to do it?" Dr. Leitao shrugged and said, "You can choose to walk out of here and never come back. We can't force you to do anything you don't want to do. We can only tell you what we think is best for your care and hope you take our advice." I asked again, "Do you think I need radiation on top of the chemo?" I could see the poor guy was struggling with the right answer, "As I said before, I can see where you're coming from. The chemo is most important. We don't really know if the radiation is necessary, but with an aggressive cancer like this, we suggest you do it all."
We spoke for a few more minutes without coming to a conclusion, then Dr. Leitao left to see another patient, and my mom, Jimmi and I stayed to talk to Lisa, who had joined us midway through the discussion.
"So, what would you do if it were you?" I asked Lisa. "I knew you were gonna do that to me," she smiled. "I don't know. It's so hard. I know you're young and this really sucks, but you have kids. I would be thinking about my kids and I'd want to be around for them."
Jimmi opened his mouth, "How often will she be checked after everything is done?"
"Every three months. She'll have scans of the pelvis, belly and lungs to make sure everything is clean."
Jimmi spoke again...or maybe it was my mom, "So if she chooses not to do the radiation now, then something pops up on one of those scans, can you do it at that point?"
Lisa answered, "Yes, then she wouldn't have a choice. And depending on what it is, they might suggest chemo again. But if she has radiation now, and something comes back in the same area, she can't have radiation again. It's a one time deal in the same area."
My mom asked, "So if she has radiation now, and then it comes back, how will they treat it?"
"With more chemo or surgery, if possible," Lisa explained.
I wasn't getting a definitive answer from anyone. Yes, I want to be around for my kids. But if the purpose of chemo is to kill stray cancer cells, shouldn't that be enough? If there was anything left over that they could see, I'd understand the radiation, but there isn't. Should I take my chances and opt out of the radiation? Should I play it safe and do it now, then risk further complications from the treatment?
I've been begging to have a choice for so long. Now I finally have one, and I can't figure out what I should do.
If I skip the radiation now, then the cancer comes back, I'll kick myself. But if I do the radiation now and it causes me to lose my bladder or never have sex again, I'll be angry for the rest of my life. But at least I'll have a life. But what if the chemo is enough to have a life? How do I make this decision? I can't even look at statistics, because there aren't any!
Stupid, stupid, stupid, stupid cancer!
How do I decide what's best for me? Who can give me the answers? What if I make the wrong decision? What if that decision kills me?
I'm open to suggestions.
Thursday, July 7, 2011
Angry
Today was a bad day.
When I woke up this morning, I was prepared to accept what is going to happen to me in a little over a week. Chemo and radiation. That's the plan. The loop of my roller coaster is getting closer.
But today, after an appointment with a biochemist, my entire thought process has changed.
After my hysterectomy, my dad was in a bagel shop in the town where he lives. He was talking to the owners about my situation, and they told him about a woman they know who had a similar situation and also went to Sloan-Kettering for treatment. I guess my dad gave them my number to give to this woman, because she called me right away to talk about her cancer and see if she could be of any help to me. The one piece of advice she insisted I accept was to go see her biochemist. She said he saved her life during chemo and she never got sick at all.
Sounds like an angel from God.
I had an appointment with that angel, aka Dr. Abrishamian, today at 11:30 am. I should've known it was going to be "one of those days" when his receptionist called at 11:15 to change the appointment to 1:00 pm. Or maybe I should've know when we got to the appointment at 12:50 and the receptionist was on the phone saying, "Ok, I'll call her to change it. Wait, she just walked in. Ok, 2:00 then?" But, whatever. Jimmi and I just ran around doing nothing in particular until the doctor was finally available to see us.
We walked in at 2:00, and the receptionist gave us a thumb's up. "He's here. Sorry about that. He lives in Pennsylvania and there was a lot of traffic." Yeah, yeah. Just give me something to make the chemo easier to handle. But, "No problem," was what actually came out of my mouth.
Dr. Abrishamian took us into his office and asked me to tell him what's going on with me. Of course, since he had asked for all of my records to be sent to him over a week ago, he already knew. I explained my situation, what had already been done and what was going to be done. Then I said, "one of your patients told me that you got her through chemo without feeling sick., That's what I want. I hate to throw up so I'll do anything."
First, Dr. Abrishamian let me know that he thinks the doctors have already been more than aggressive with my treatment just by doing the hysterectomy alone. Then he let me know that if we were in Germany, they would not even think of giving me chemotherapy at this point. "Doctors here follow a protocol. They do the same thing for every patient so they have information for their studies. Why do they need to give you radiation?" I just stared at him and shrugged my shoulders. "Because they said the chemo works best in conjunction with the radiation." Dr. A shook his head. "I don't understand what these doctors are thinking," he said. "Radiation CAUSES cancer. And the damage to the tissues in your body is permanent. You can't recover from that. I can give you supplements to boost your immune system to help with the chemo, but there's nothing I can do for the radiation. If it gives you diarrhea, I can stop it. But that's it."
My face fell. I hadn't thought about the effects of radiation being permanent.
Dr. A continued, "What I will do is give you bunch of different supplements to boost your immune system. These are all things your body makes on its own, I'm just giving you more. They will help your liver to break down the medications easier and help your digestive system stay strong. That will help with the nausea. It will also help to keep your white blood cells at a normal level and keep your bone marrow from depleting so you're able to fight infections better and you won't end up sick and in the hospital. Honestly, though, the best thing I can tell you is to take Alka Seltzer. The doctors give you all of these anti-nausea meds, but all you really need is Alka Seltzer the day before and the days of chemo. It'll be the best $4.00 you'll ever spend."
Sounded good to me.
But I asked, "What will the doctors say if I ask them about this? Will they let me take these supplements?" Dr. A smiled, "It's up to you whether or not you discuss it with them. But no, they usually don't like you to take anything but what they tell you to take. They don't want any outside influences ruining their studies. The thing is, they prescribe medication to you because it's the standard regimen. But I'm a chemist. I can actually make the medicines. I also know exactly why they cause the side effects, so I know how to counteract them. Nothing I give you will alter the effectiveness of the chemotherapy, it will just help you to feel better. You'll walk into the treatment without any problems. You'll feel fine. Everyone will want to know why."
I couldn't think straight. Jimmi and the doctor were chatting about medical doctors and music and cancer treatments, and I was just sitting there in a daze. I don't want radiation. The whole time I was so scared of chemo, but it's actually the radiation I should be worrying about. If chemotherapy is systemic, and kills cancer cells everywhere in the body, why do I need to radiate the stump that's left after surgery? The doctors say they got it all, right? So what's left to zap? Only my vagina. If they do that, they'll shrink it. If they shrink it, I'll need dilators. If I need dilators, my sex life is over.
I'm not ok with that.
Dr. A went on to talk about foods that I should and shouldn't eat to help with the treatments and aid in preventing more cancer growth. Anything with alcohol or vinegar is out because my liver will be too busy working on the medical poisons to break those down. Ok, I can live without salad dressing. But then, the list continued.
I can't eat:
Ketchup, mustard, BBQ sauce, hot sauce, horseradish, mayonnaise, salami, pepperoni, hummus, soy sauce, teriyaki sauce, tofu, miso soup, mozzarella, fontina, cottage cheese, cheddar, swiss, muenster, pepper jack, blue cheese, cream cheese, mushrooms, yams, sweet potatoes, pickles, marinated artichokes, peppers, eggplant, tomatoes, potatoes, red meat, bananas, pineapple, grapes, jams or jellies, dried fruits, store bought fruit juice, soft drinks, all baked goods, bagels, donuts, bread, rolls, cake, cookies, muffins, crackers, egg rolls, waffles, pita bread, pancakes, chocolate, candy, potato chips, pretzels, ice cream, pudding, sherbet, sorbet, sugar and artificial sweetener.
Ok. Ummmm...What the Hell can I eat??
I think I was probably ok until I read the no cookies, ice cream or chocolate part. Then he tells me that he doesn't want me to lost any weight. Are you kidding? You've just taken away anything that will possible keep fat on my body and you tell me you don't want me to lost weight? I get that this will help with the chemo, and I understand that cancer cells love sugar. But give me a break! And the best part is that the doctors at Sloan-Kettering are telling me to drink Gatorade and eat Jell-O and ice pops to help with chemo. But this guy is saying no sugar or sugar substitute!
Now I was getting angry.
I really want to do what Dr. A is telling me to do because feeling good during chemo is really important to me. I understand where he's coming from with the supplements. But without hiring a personal nutritionist and chef to live with me for four months, I really don't know how I can possibly stay on this diet. I won't even be able to eat my own wedding cake!
Dr. Abrishamian encouraged me to start my supplement regimen immediately so my immune system has time to build up before treatments start in 10 days. I agreed, and he walked us to the waiting room while he got an armful of bottles together for me. He plopped them down on the counter, wished us luck and left his receptionist to type up my instructions.
Biotin - take 2 pills twice daily with food. Do not take after 5 PM.
Bifo Viden - take 1 capsule twice daily with or without food
Co-Q-10 - take 2 pills in the am. Days of chemo take 2 pills twice daily
Colostrum - take 2 capsules twice daily. Days of chemo, take 4 pills twice daily
I-5 & L-Glutamine - mix 1 scoop of each supplement in milk and drink once daily. During chemo take twice daily
Vitamin D - take 1 pill daily. During chemo take 1 pill twice daily.
In a juicer, Blend equal parts:
Parsley
Anise
Bok Choy
Carrots
Drink 8 oz per day
Whoa. That's a lot of stuff. If it works, I don't care. But should I try it? Should I talk to Dr. Leitao about it tomorrow? What if he says no? Should I do it behind his back? Will he let me skip the radiation? Will I be forced into submission again?
I don't know what to do!
My head is spinning.
I paid a fortune for my stash and left the office. I was in bitch mode and when Jimmi tried to talk to me, I just about bit his head off. Everything Dr. Abrishamian had said seemed to make sense. But when I had spoken to the other doctors, everything they had said seems to make sense too. Why am I so easily swayed? I get roped into all the sales pitches. I'm the perfect target for the next fast talking salesman that wants to make a few bucks. I'll believe anything you tell me as long as it sounds like there's information to back it up.
I'm lost.
I'm scared.
I'm confused.
I don't know what to do.
I don't know who to listen to.
I just want this to go away.
I just want to be healthy.
I just want to get married.
I just want my life back.
When I woke up this morning, I was prepared to accept what is going to happen to me in a little over a week. Chemo and radiation. That's the plan. The loop of my roller coaster is getting closer.
But today, after an appointment with a biochemist, my entire thought process has changed.
After my hysterectomy, my dad was in a bagel shop in the town where he lives. He was talking to the owners about my situation, and they told him about a woman they know who had a similar situation and also went to Sloan-Kettering for treatment. I guess my dad gave them my number to give to this woman, because she called me right away to talk about her cancer and see if she could be of any help to me. The one piece of advice she insisted I accept was to go see her biochemist. She said he saved her life during chemo and she never got sick at all.
Sounds like an angel from God.
I had an appointment with that angel, aka Dr. Abrishamian, today at 11:30 am. I should've known it was going to be "one of those days" when his receptionist called at 11:15 to change the appointment to 1:00 pm. Or maybe I should've know when we got to the appointment at 12:50 and the receptionist was on the phone saying, "Ok, I'll call her to change it. Wait, she just walked in. Ok, 2:00 then?" But, whatever. Jimmi and I just ran around doing nothing in particular until the doctor was finally available to see us.
We walked in at 2:00, and the receptionist gave us a thumb's up. "He's here. Sorry about that. He lives in Pennsylvania and there was a lot of traffic." Yeah, yeah. Just give me something to make the chemo easier to handle. But, "No problem," was what actually came out of my mouth.
Dr. Abrishamian took us into his office and asked me to tell him what's going on with me. Of course, since he had asked for all of my records to be sent to him over a week ago, he already knew. I explained my situation, what had already been done and what was going to be done. Then I said, "one of your patients told me that you got her through chemo without feeling sick., That's what I want. I hate to throw up so I'll do anything."
First, Dr. Abrishamian let me know that he thinks the doctors have already been more than aggressive with my treatment just by doing the hysterectomy alone. Then he let me know that if we were in Germany, they would not even think of giving me chemotherapy at this point. "Doctors here follow a protocol. They do the same thing for every patient so they have information for their studies. Why do they need to give you radiation?" I just stared at him and shrugged my shoulders. "Because they said the chemo works best in conjunction with the radiation." Dr. A shook his head. "I don't understand what these doctors are thinking," he said. "Radiation CAUSES cancer. And the damage to the tissues in your body is permanent. You can't recover from that. I can give you supplements to boost your immune system to help with the chemo, but there's nothing I can do for the radiation. If it gives you diarrhea, I can stop it. But that's it."
My face fell. I hadn't thought about the effects of radiation being permanent.
Dr. A continued, "What I will do is give you bunch of different supplements to boost your immune system. These are all things your body makes on its own, I'm just giving you more. They will help your liver to break down the medications easier and help your digestive system stay strong. That will help with the nausea. It will also help to keep your white blood cells at a normal level and keep your bone marrow from depleting so you're able to fight infections better and you won't end up sick and in the hospital. Honestly, though, the best thing I can tell you is to take Alka Seltzer. The doctors give you all of these anti-nausea meds, but all you really need is Alka Seltzer the day before and the days of chemo. It'll be the best $4.00 you'll ever spend."
Sounded good to me.
But I asked, "What will the doctors say if I ask them about this? Will they let me take these supplements?" Dr. A smiled, "It's up to you whether or not you discuss it with them. But no, they usually don't like you to take anything but what they tell you to take. They don't want any outside influences ruining their studies. The thing is, they prescribe medication to you because it's the standard regimen. But I'm a chemist. I can actually make the medicines. I also know exactly why they cause the side effects, so I know how to counteract them. Nothing I give you will alter the effectiveness of the chemotherapy, it will just help you to feel better. You'll walk into the treatment without any problems. You'll feel fine. Everyone will want to know why."
I couldn't think straight. Jimmi and the doctor were chatting about medical doctors and music and cancer treatments, and I was just sitting there in a daze. I don't want radiation. The whole time I was so scared of chemo, but it's actually the radiation I should be worrying about. If chemotherapy is systemic, and kills cancer cells everywhere in the body, why do I need to radiate the stump that's left after surgery? The doctors say they got it all, right? So what's left to zap? Only my vagina. If they do that, they'll shrink it. If they shrink it, I'll need dilators. If I need dilators, my sex life is over.
I'm not ok with that.
Dr. A went on to talk about foods that I should and shouldn't eat to help with the treatments and aid in preventing more cancer growth. Anything with alcohol or vinegar is out because my liver will be too busy working on the medical poisons to break those down. Ok, I can live without salad dressing. But then, the list continued.
I can't eat:
Ketchup, mustard, BBQ sauce, hot sauce, horseradish, mayonnaise, salami, pepperoni, hummus, soy sauce, teriyaki sauce, tofu, miso soup, mozzarella, fontina, cottage cheese, cheddar, swiss, muenster, pepper jack, blue cheese, cream cheese, mushrooms, yams, sweet potatoes, pickles, marinated artichokes, peppers, eggplant, tomatoes, potatoes, red meat, bananas, pineapple, grapes, jams or jellies, dried fruits, store bought fruit juice, soft drinks, all baked goods, bagels, donuts, bread, rolls, cake, cookies, muffins, crackers, egg rolls, waffles, pita bread, pancakes, chocolate, candy, potato chips, pretzels, ice cream, pudding, sherbet, sorbet, sugar and artificial sweetener.
Ok. Ummmm...What the Hell can I eat??
I think I was probably ok until I read the no cookies, ice cream or chocolate part. Then he tells me that he doesn't want me to lost any weight. Are you kidding? You've just taken away anything that will possible keep fat on my body and you tell me you don't want me to lost weight? I get that this will help with the chemo, and I understand that cancer cells love sugar. But give me a break! And the best part is that the doctors at Sloan-Kettering are telling me to drink Gatorade and eat Jell-O and ice pops to help with chemo. But this guy is saying no sugar or sugar substitute!
Now I was getting angry.
I really want to do what Dr. A is telling me to do because feeling good during chemo is really important to me. I understand where he's coming from with the supplements. But without hiring a personal nutritionist and chef to live with me for four months, I really don't know how I can possibly stay on this diet. I won't even be able to eat my own wedding cake!
Dr. Abrishamian encouraged me to start my supplement regimen immediately so my immune system has time to build up before treatments start in 10 days. I agreed, and he walked us to the waiting room while he got an armful of bottles together for me. He plopped them down on the counter, wished us luck and left his receptionist to type up my instructions.
Biotin - take 2 pills twice daily with food. Do not take after 5 PM.
Bifo Viden - take 1 capsule twice daily with or without food
Co-Q-10 - take 2 pills in the am. Days of chemo take 2 pills twice daily
Colostrum - take 2 capsules twice daily. Days of chemo, take 4 pills twice daily
I-5 & L-Glutamine - mix 1 scoop of each supplement in milk and drink once daily. During chemo take twice daily
Vitamin D - take 1 pill daily. During chemo take 1 pill twice daily.
In a juicer, Blend equal parts:
Parsley
Anise
Bok Choy
Carrots
Drink 8 oz per day
Whoa. That's a lot of stuff. If it works, I don't care. But should I try it? Should I talk to Dr. Leitao about it tomorrow? What if he says no? Should I do it behind his back? Will he let me skip the radiation? Will I be forced into submission again?
I don't know what to do!
My head is spinning.
I paid a fortune for my stash and left the office. I was in bitch mode and when Jimmi tried to talk to me, I just about bit his head off. Everything Dr. Abrishamian had said seemed to make sense. But when I had spoken to the other doctors, everything they had said seems to make sense too. Why am I so easily swayed? I get roped into all the sales pitches. I'm the perfect target for the next fast talking salesman that wants to make a few bucks. I'll believe anything you tell me as long as it sounds like there's information to back it up.
I'm lost.
I'm scared.
I'm confused.
I don't know what to do.
I don't know who to listen to.
I just want this to go away.
I just want to be healthy.
I just want to get married.
I just want my life back.
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