Wednesday, July 20, 2011

Let the Treatments Begin...

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.


  1. You're taking control of kicking that cancer's ass! You're brave. Brave. REALLY BRAVE. (p.s. my mom is familiar with the annoying Susan thing, too!)

  2. aw lady. I hate this so much. but at LEAST know the fear of the unknown-- in terms of the process itself-- is behind you. impossible as it seems, please don't try to anticipate bad side effects before they happen. you are going to be one of the lucky ones whose body tolerates all this stuff well! we all love you soooo much.