Saturday, August 27, 2011

Just When One Door Closes...


I turned to look at my mom, who was crying happy tears for the first time in almost six months. My own waterfalls were being held by a very flimsy dam, but only because there were so many people standing around to watch me bang the gong that symbolized my very last day of radiation treatment.

Five and a half weeks. 28 treatments. 280 buzzes of the machine.



I hugged my techs Janis, Kerry and Bob goodbye and headed to the changing room for the last time. As I took off my gown and threw on my jeans, I thought about the last song I heard playing in the room during the treatment. Janis gave me a Posion shuffle, which was perfect, but the last song said it all. "Something to Believe In." That song never meant more to me than it did that day. I have so much to believe in. I believe the treatments will make me better. I believe I will get married next week. I believe it will all be ok.

Since it was Thursday, Jimmi had to go to The City to pick up his tuxedo, and I decided to go back to my mom's house to wrap our bridal party gifts. But halfway back to the house, I started feeling terrible. When we arrived, I immediately shuffled over to what I've decided to call "my chair" and plopped down on my side. With my radiation-burned ass and snoochie, sitting isn't usually the most comfortable option. Walking sucks, too. Come to think of it, there aren't many positions I can stand for more than a minute.

My mom covered me with a super-soft blanket and I was out cold...until the pain woke me a few minutes later. "Mommy, it hurts!" I really can be such a baby when I'm not feeling well. My mom walked in, thermometer in hand. She pushed the button - beep beep - then stuck it under my tongue. Beep beep beep beep. 99.8. "That's not good," I said. "And I'm so cold." My mom wasn't worried, "they say not to call until it hits 100.4. Do you want to lay flat in my bed?" my mom offered, "Maybe it'll help." I was willing to try anything.

I curled up in my mom's bed and tried to watch a movie. My head was hurting and I had chills. Finally, I got up and went to the kitchen where my mom was starting dinner. "I'm done in there." And I rested my head on the counter. "I can't even hold my head up." I stared at the unwrapped gifts that I needed to make pretty for our rehearsal dinner exactly one week from that night, and I just felt exhausted.

My dad and Jimmi arrived a few minutes later, and the dinner I'd requested was served by Super Mom. Unfortunately, after two bites, I had to leave the table and hit "my chair" again. I rested for a bit, then tried to join my family for a second time. No luck. Jimmi and my dad headed to the office to bond some more, and I sat at the table trying to force myself to eat the smallest bites of food. The tears started to fall, "I don't want to die, Mommy." She was a little taken by my comment. "I don't remember anyone saying that was a possibility. Please don't talk about that, you're gonna make me very sad." She got a tissue and dabbed at her eyes, then handed me a clean one. "I hate how I feel. How am I gonna get married like this? Why can't I just feel better for a little while?" She handed me the thermometer again. Beep beep beep beep! 100.0.


I'm gonna end up in the hospital, I just know it.

I laid my head on the table as my mom cleaned up around me. Every few minutes, I'd recheck my incredible, rising temperature. 100.2. Not quite there yet. Try again. 100.7. Oops! Skipped 100.4! "Mom, we need to call the doctor." She walked over and looked at how I was sitting, leaning to one side, wrapped in a blanket. "Sit up, take the blanket off and take it again." I did. 100.4. "Can you call for me, Mommy?" I'm really not sure what it is about me being sick and having my mom there that makes me completely shun all adult responsibilities, but it happens every time. Anyway, she did call, and I laid uncomfortably on a chair and waited.

Dr. Gorsky wasn't on call that night, but Dr. Graham was. I'm pretty sure my mom was relieved to hear that. It's not that she doesn't like Dr. Gorsky; she just has a really hard time with her accent!

After about a 15 minute conversation with the doctor, my mom let me know that I needed to go to the emergency room so they could check my blood counts. If the white cell count is low, they'd need to keep me. If not, I could go. Luckily, we didn't need to go to New York City this time. The chemo doctors are affiliated with one of the local hospitals in New Jersey, so we were able to go there. My mom said, "Dr. Graham is calling ahead. But you need to let them know you're a cancer patient and can't sit in the waiting area. You need to go right in." I pointed to my wigless head. "I think that's pretty obvious, no?"

I sent Jimmi home to feed the dog and cats and told him I'd call if I needed to stay. He kissed me goodbye, and I got into my mom's car and we headed to the Emergency Room.

My dad helped me out of the car and my mom went to park. I took baby steps to the door as my dad held onto my arm. A nurse greeted us and I was forced to say a phrase I never wanted to hear about myself, "Hi I'm a cancer patient with a fever. Dr. Graham called ahead." She smiled, nodded and gave a full-arm  wave to come on back. She handed me a mask, which I used to cover my nose and mouth and keep extra germs out. I just called myself a cancer patient. Ewww. Yuck. Gross. I'm so much more than that.

My fever was still holding at 100.4 when the triage nurse took it. Good. At least they won't think I'm crazy. I think the longest part of registration was listing all of my meds. Seriously.

They took me to a room in the ER immediately, and handed me a gown. I wish they would've just admitted me. I know my counts are down. I know I'm gonna need to stay. I really could've skipped the five hour emergency room visit.

Blood was drawn for a CBC and cultures. The line was left in my arm for future use. A warning sign was placed out side my ER room door to make sure anyone who was going to come into contact with me washed their hands and wore a mask if there was even the slightest chance they could be sick. We even kicked my dad out of the room for coughing. And then we waited.

There was an occasional EKG or chest x-ray to keep things interesting. There was a barrage of attending doctors, who I truthfully didn't want to listen to, and there was a TV that finally started to play Family Guy. Ah, some entertainment.

At about 11:00, Jimmi decided he didn't want to sit home and wait anymore, so he headed over to join us. That's when I got the results. Attending Dr. #1 said, "Your white cell count is very low. We need to keep you here and start you on broad spectrum antibiotics. If the blood cultures grow something more specific, we'll narrow it down, but you need to be here and you need an isolation room. That could take some time."

Great. It's already midnight. They decided to start my meds in the ER, just to get them going as soon as possible. I turned to my mom with a random thought to share, "You know, most of the stubble on my head is falling out, but there are some hairs that have grown back in. They're longer than the stubble and they're all grey!" She just looked at me, "Really? It's growing back?" I think she missed my point. "GREY! It's growing back grey!" I didn't bother to tell her that while I was getting ready for bed the other night, I noticed the infestation of white hairs on my head and they freaked me out. So, what did I do? The same thing any sane, bald girl would do. I grabbed my tweezers and started plucking those little suckers out!!

"We found you a room!" sang a voice at my door. Awesome! Of course, it was almost 2:00 am by now. We were all exhausted, and I knew there would be no chance of getting any sleep that night. But, here I am. I'll make the best of it.

I was wheeled down to my room, which had two beds set up, but before I could ask, the nurse came in and said, "You won't have a roommate because you need to be isolated." Whew! Sometimes I don't play well with others.

After I was settled in, I decided to be a big girl and let my entire fan club go home. After looking around at the selection of uncomfortable chairs, I didn't feel right having anyone try to sleep on one of them. I got kisses all around and watched my parents and my fiance walk out the door. Then I made myself as comfortable as I could, closed my eyes and couldn't sleep. I painfully tossed and turned, but between the positioning of my IV and the raw agony in my nether region, there just wasn't any hope for a restful night. Finally, at 4:45 am, my eyes closed and I drifted off to..."Good morning! I'm here to draw your blood!" My right eye popped open and peeked at the clock on the wall, which read 5:00 am. Not happening. I only slept for 15 minutes! And they just took my blood a few hours ago in the ER!! UGH!!!

Ok, the 5 AM blood-sucker is gone. Try again. I closed my eyes. Nope. Turned over. Nope. Stood up. Nope. Went to the bathroom. Nope. I was still awake when the nurses changed shifts at 7 and the new one came to assess me. I tried to sleep again, but there was a knock on my door at 7:30. "Room service!" and a tray of food I didn't order was brought into my room. Not even interested in that. I closed my eyes again.

Knock, knock, knock!

You've gotta be kidding me!

"Come in!" And in walks a priest. Was I actually asleep and dreaming this? Am I dying? Why is there a priest at my door? Is he coming to tell me I'm a sinner because I'm divorced? Or that Jimmi is the devil? "Hello, I am Father (Forgive me, Father, I don't remember your name). Is it ok if I pray for you?" What's the correct answer here? How did he even know I am, or was, or am Catholic? If I say no, will I go to Hell? Will I hurt his feelings? I do believe in God, so I know prayers are good. Oh, ok. Why not. "Sure." I said. Father I Dunno held his hand over my head as I clasped my hands together like a good Catholic girl. I said Amen when it was appropriate. I didn't fall asleep during it. And I let him anoint me with oil, even though I was quite sure it was going to stain my new, pink beret. I thanked him when he was done, and he left the room.

About a half hour later, my room phone rang. Seriously? It's 8:30 in the morning! I've slept for 15 minutes! Oh, that's annoying! Where's the stupid phone? Oh! It's behind me, in a corner all wrapped up in it's own chord. Ring! Ring! UGH!!! I jumped out of bed. "OUCH!" Unplugged my IV pole, dragged the pole around the bed, grabbed the phone, pulled the wires off, "Hello?" "Hi Sweetheart!" It was my dad. "Daddy? Why didn't you just call me on my cell?" He was silent for a minute. "Oh, I'm sorry. I just want to let you know I'm here so I'll be up in a minute. Do you need anything?" Just some sleep. "No, I'm fine."

My dad entered my room a few minutes later with terrible bags under his eyes. I felt badly for him. Because of me, he and my mom didn't get home until after 3:00 am. Here it is 8:30 am, and he's already back.

Knock, knock, knock!

Now what?

"Come in!" A balding man, who appeared to be about 60, entered my room. "I was wondering if you'd like to receive Communion today?" For real? Where am I? First the priest, now the Communion man? Again, how do I say no? "Sure." He looked at my dad and I and explained, "We're all going to say the Our Father first." How do these people know I'm Catholic? Do they just knock on everyone's door? We finished the prayer, I received the Bread of Christ, then the man asked my dad if he'd like one too. He obliged. Oh, I wish my mom had been there. The poor guy's face would've dropped to the floor when she said, "I'm Jewish!"

The rest of my day was pretty uneventful. I finally met Dr. Graham, who informed me that my white cell count was up just a tiny bit, which is good, but since I've now finished radiation, I'm allowed to have a shot that will help boost them even more. She also let me know that I'd need to stay until probably Sunday to give the blood cultures a chance to grow and to make sure I do well on the IV antibiotics. I figured she'd say that. Then she asked to see my backside, and after checking out the view, confirmed my own feelings, "oooh! That looks like it hurts!" Thank you, doctor.

After Dr. Graham left, my nurse came in to give me a blood thinner to avoid getting clots while I'm lying around. It was super fun when she said, "It's a shot that I'll put in your stomach and it stings a bit." I didn't care how pretty that sounded in her Australian accent, I still didn't want it. But five minutes later, she was standing over me, wiping my lower abdomen with an alcohol pad, then gripping a chunk of skin saying, "Little pinch. Little sting." Little, my ass! "OUCH!!' Oh, and it was one of the lingering stings. Was that really necessary?

Finally, my mom showed up with Cocoa Krispies and kisses for me. I was able to eat a little bit and then I just hung out in bed telling my mom what a busy morning it had already been. Jimmi showed up a few hours later with cards for our 5 year first date anniversary, and I realized how quickly our wedding would be here. God, I hope I make it.

The next time the nurse came in, she had the white blood cell booting shot. I felt better when she said it was going into my arm, but then she let me know it will sting too, and I just turned my head away and waited for it to be over. Yup. That one sucked, too. Dr. Graham had told me earlier that 10% of people have bone pain from that shot. She said sometimes it's the hips or the skull or the chest, so just be prepared. I asked the nurse about it and she said, "It doesn't happen right away. Maybe after the second or third day." Wait, what? "How many shots do I need?" I asked with concern. "Oh, usually as many days as you're here." Wonderful.

Since my counts were so low, I wasn't really allowed to leave my room and the door had to stay closed to keep germs out. My mom insisted I do laps around the room so I could get my body moving. Especially my bowels, which, after having diarrhea for four solid weeks, had decided to go on strike and not produce anything in about 5 days. I did as I was told, then, as Jimmi helped me into bed, I felt my chest go into pulsating spasms. "Ow! My chest! Oh my GOD!" I gripped my chest and sunk to the bed. "Ow, ow, ow, ow. It feels like someone is squeezing my chest. It hurts!"

Jimmi got the nurse and an EKG machine immediately appeared in my room. They were checking me for a heart attack. "Is this from that shot?" I asked. My nurse assured me that it doesn't happen that quickly. Then what the hell is it?

"The EKG was normal," said my nurse when she came back to my room. "I've called the doctor and she wants to out you on Nexium for heartburn." What is wrong with these people? "I haven't eaten anything, how would I have heartburn? And, really, that didn't feel like heartburn. Are you sure it wasn't from the shot?" She insisted that it was too soon for any side effects from the shot and that sometimes heartburn doesn't feel like heartburn. "Did you call Dr. Graham?" She looked at me, "No, Dr. Ahmed. The attending." I wanted to say, I don't want that doctor! She's not my doctor! Call Dr. Graham! But I didn't. "Oh, ok," was all I could muster.

The pain continued to get worse, but it really only happened after I'd been standing and I'd go to sit down. But it hurt so much I could hardly breathe. Plus, to make it worse, I had finally gone to the bathroom after my buildup, and now that area was burning and hurting as well. The nurses changed shifts, so now I had Maria taking care of me. She just happened to walk in on me while I was in intense pain and offered some meds. I'll take more morphine. It helped a little before. "I can give you something better than morphine and it'll last longer, but it might make you nauseous." Oh no! "No. I don't want anything else to make me sick." Maria said, "It will help with your pain. I'll give it to you a little at a time so you can see how you feel, ok?" She was right. I needed the pain to go away, so I agreed to her plan. She shot 1/4 of the dose into my IV, then had me wait. A few minutes later, I was loopy, the pain wasn't as bad, but I wasn't nauseous. Maria came back for another 1/4 dose. Same result, but loopier and less pain. My mom decided to bring a bucket and my tooth brush to my bed as have me brush right there. It didn't look like I'd be walking anywhere, at that point! Finally, Maria pushed in the final dose. The pain was gone and I was very happy. "I have to pee!" I announced. So much for not walking. Jimmi helped me to the bathroom so I didn't fall over, then he helped me back to bed. The pain was just about gone from this wonder drug. Maria insisted I call her any time I needed to use the bathroom through the night, and a "Fall Precautions" sign was placed outside my door.

I was so sleepy, that my family decided now was a good time to leave so I could rest. I kissed them all goodbye then fell into a deep sleep for an hour until the phlebotomist woke me for blood. Grrrrr!

Here it is, Saturday, August 27th. I found out that my white blood cells have quadrupled, which is great. Nothing grew in the blood cultures, which is also great, Dr. Graham confirmed that the pain WAS from the shot, so I was right, and I can most likely go home tomorrow, which is long as the hurricane stays away.

I also realized something else, a year ago, before all of this crap started, Jimmi and I had a choice for our wedding date at the venue we booked. August 27th or September 3rd. Obviously, we chose September third, but what if we had chosen today? I would be in the hospital, and we wouldn't be married. I also found out that since the reception venue is in the botanical gardens, which is run by the State of NJ, has been shut down this weekend due to the severe whether we're supposed to have. Both weddings this weekend had to reschedule or be moved to another venue. I feel so badly for those brides. They must be devastated. I know I would be.

But I look ahead into the forecast. Saturday, September 3, 2011. Sunny skies and 79 degrees. Perfect. Now all I need is one more miracle. I need to be well enough to get through my day. I have one week.

I can do this.

Monday, August 22, 2011

Random Ramblings

It's been a few days since I've written. But I have an excuse! Well, I have a few excuses, actually. It could be that I'm too sad to talk about my issues; it could be that I've just been too tired; it could be that I've been in too much pain; it could be that I really miss my kids; or it could be a combination of all of the above.

I just can't seem to get myself to feel better.

It's been over a week since my chemo treatments, and I'm still nauseous every day. Each day I wake up and I think to myself, "Will this be the day I feel better?" And each day I realize it's not. The time is flying by, and my wedding will be here in 12 days. Really, I don't need to feel perfect that day. I just need to feel good enough.

Aside from the nausea, my biggest obstacle has been the severe diarrhea caused by the radiation. I only have three more treatments left, but I'm in agony. I can't eat or drink much because I always feel sick. I've dropped about five pounds in the last week, which I really can't afford to do. When I do eat, I need to keep it bland, because I know it'll be shooting out the back end within a half hour and I don't want it to sting more than it has to. The skin "down there" is so raw, I can't even sit down. I cry a lot. I'm embarrassed and I'm depressed and I just want this to stop.

The doctor tells me that the week after the radiation is finished will be the worst for the diarrhea. My wedding is nine days after the last treatment. What if I'm not better yet? What if it hits me when I'm walking down the aisle in my beautiful, perfect dress? How will I run to the bathroom? I won't make it. That would certainly be a memorable wedding ceremony, huh?

Think positive!!

Yeah, ok.

I miss my kids.

I'm lucky that their dad isn't working this summer so they can stay with him. There's no way I'd be able to take care of them or do anything even remotely fun with them. But, the problem is, my ex is terrible with the phone. The kids never call me. I barely ever see them. Don't get me wrong, he'll bring them over any time I ask, but most of the time I don't feel well enough and I don't want them to see me that way. They're scared enough as it is.

I did get to see them for a few minutes today, though. He brought them over on their way down the shore. They'll be gone for a week. I got lots of hugs, but I couldn't help noticing the way Dylan was staring uncomfortably at my wig.

I hate this.

It's not fair.

I know. Life isn't fair.

But why did this have to happen NOW?

I don't mean to complain. There are people who have it a lot worse than I do, and I know that. But I'm having a little pity party over here, and right now, I'm the guest of honor.

I don't want to cancel my wedding.

We have people coming in from 11 different states to be here for the big day. Flights and hotels have been booked. Tuxedos have been rented, dresses have been bought.

It HAS to happen.

I need this wedding.

I'm going to have my wedding.

Wednesday, August 17, 2011

I'm Back!

I know, I know! It's been over a week since I've written. I'm sorry some of you were worried about me, and I appreciate the e-mails and phone calls.

Let's just say, it's been a very hard week.

Where should I begin?

Ok, obviously, I'm sure everyone assumed that my blood counts were high enough to start my second chemo cycle last Wednesday, since that's pretty much when I disappeared. Yes, my white cell count needed to be at 1 and, after waiting in Dr. Gorsky's office for the result, we were told I was at 1.3.

Just made it.

I was actually relieved that I'd be able to start this chemo cycle because I really didn't want to push it off and risk feeling crappier on my wedding day. But Dr. Gorsky made sure to warn me that my blood counts were still very low, and I'm at a high risk for infections and fevers that could put me in the hospital at any time.

Ok, great. Never even thought about that possibility.

"Is it better if I wait to start the treatment until next week, then?" I asked cautiously. "It doesn't matter, at this point. As long as your counts are in the range, we should start."

So we did.

Since it had taken a while to get my results and meet with the doctor, I was a bit behind schedule for my treatment. The nurse stuck me quickly, and got the IV fluids rolling. After that, Wednesday was pretty uneventful. Five hours went by slowly, then I slept a lot when I got home. But, all in all, I felt much better than I did on the first day of cycle one.

But then came Thursday.

I woke up feeling ok. Tired, but not too bad. I popped a few anti-nausea pills and headed over to Sloan-Kettering for radiation and chemo.

Radiation is like the movie "Groundhog Day". It's the same routine every time, with very little excitement. I checked in at the desk, handed my bag to my mom, and headed for the changing area. I opened the cabinets, grabbed two plastic-wrapped hospital gowns, took them to the first room, pulled the curtain and started to undress.

"What the HELL is that?!"

I looked at the red dots all over my abdomen. "Oh my God. What IS that?" I said out loud. I immediately took my pants down to check my legs. There were red dots, or splotches, everywhere. My heart sank. Is is a reaction to the chemo? Have my white cell counts dropped too low? Will I need to go to the hospital? Will this delay treatment?

Ok, chill. Wait until after radiation and ask to see Dr. Gorsky.

I walked into the seating area and waited for my name to be called. Janis came to get me and I showed her the rash on my legs. "Oh, I wonder what that is. Just show them in chemo, I'm sure it's fine."

I wasn't so sure.

After my ten buzzes of the radiation machine, I headed back out to change and meet up with my mom. "I have a rash all over my body," I said when I saw her. My mom tried not to look scared, "Let me see." I lifted my shirt to let her inspect the redness. My mom, who has her own experience with blood problems, said confidently, "That doesn't look like a platelet problem. Let's go upstairs and see what they say."

I checked in on the third floor. "Hi, I'm here for treatment, but I have a rash that should probably be checked first." The receptionist nodded and said she'd make a note of it. A few minutes later, one of my favorite nurses, Karen, called my name. "What's this note all about?" she asked with concern. I waited until we got into the exam room and showed Karen what she wanted to see. "Hmmmm. Does it itch?" she asked. I shook my head. "Hurt?" she asked. Another shake. "Does it bother you at all?" I shook my head once again. "I wouldn't have even known it was there if I hadn't gotten undressed for radiation. I didn't even see it in the shower this morning." Karen took another look and said, "Let me get Dr. Gorsky  and we'll go from there."

Dr. Gorsky walked in with half a smile and said in her thick, Russian accent, "What, you miss me already?" I giggled and explained today's problem to the doctor. She asked the same questions about the rash itching or hurting, and I gave the same answers. "I don't think this is a problem, but I want you to go to Dermatology before your chemo to make sure."

Dr. Gorsky set up an appointment for 2:30 with a dermatologist on-site. Since it was only 1:30, at that point, and time was ticking away, I was sent to the chemo suite to at least start the first part of my two-hour IV hydration. An hour later, I was unhooked and in the elevator on my way to the second floor. Of course, I had to fill out the mandatory paperwork and wait 45 minutes to see the doctor, but, finally, it was my turn.

Another faceless nurse set me up in an exam room and told me the doctor would be right in. We didn't wait long for the pretty, sticky-sweet dermatologist who looked to be younger than I am. "What's going on?" she asked. For the thousandth time that day, I explained my symptoms and lifted my shirt and pant legs. The rash actually seemed to be fading by then, but the doctor still wanted to check it out. She asked another series of questions and one of them was  "Any shortness of breath?" I remembered the night before, and realized that I had used my inhaler. "Well, yes. I have mild asthma and I needed to use my inhaler last night." She thought for a minute and asked some more breathing questions until she came out with, "Without a history of asthma, I'd be concerned. A rash and shortness of breath with certain chemo can be life-threatening."


"Should I worry?" I asked. "No, it might be viral." She took my temperature, which read 99.4. "You might have picked something up somewhere. The low-grade fever and rash suggest it could be viral, but I don't think you need to delay treatment. If it gets worse, I'm always here."

And that was that. Back upstairs for my chemo treatment.

It was almost 4:00, by then, and I was exhausted. I still had over an hour left of hydration and chemo to go, and I just wanted to sleep. Finally, I gave in and passed out on the chair as the poison started its war in my body.

As far as excitement this week, that's it. Since Thursday, it's been a lot of fatigue, nausea, diarrhea, IV fluids, no appetite, no energy, crying and weight-loss. Each day I wake up and hope I'll feel better. Each day gets closer and closer to my wedding day. Each day I worry about whether or not I'll even make it down the aisle.

But I have to be positive! Happy thoughts! Happy thoughts!

And prayers.

I need prayers more than ever.

My beautiful, perfect wedding is 17 days away.

Please pray I'll have the strength.

Monday, August 8, 2011

Wishes Come True

I guess if you wish hard enough, sometimes your wishes come true.

Unfortunately, right now, that's a bad thing.

I kept saying I didn't want to do it. I kept hoping my next chemo cycle wouldn't come. I kept asking "Why do I have to do this?" I was scared and crying and begging not to go.

Now my tune has changed. I'm wishing I could have had chemo...because today, I couldn't.

I managed to wake up early and get to my 7:45 am radiation appointment, basically on time. When I was done, Jimmi, my mom and I headed up for my appointment with my medical oncologist, Dr. Gorsky, and then my six hour-long chemo treatment.

A new nurse took me back for blood work and vitals while my fan club stayed in the waiting room. I was on the verge of tears as the catheter was shoved into the vein in my arm and blood started flowing into the vials. My temperature was normal and my pulse and blood pressure were ok, too. This was the easy part.

I met up with my mom and Jimmi and we were taken to an exam room a few minutes later. I had a list of questions for Dr. Gorsky in my bag, which also contained movies, anti-nausea drugs, ginger chews, a healing shawl and a cell phone charger. The doctor came in a few minutes later with her typical sympathetic expression and asked me how I was feeling. I shrugged and told her about the nausea and she made a few suggestions about the order in which to take my drugs, but didn't prescribe any more. But the next thing she said caught me completely off guard. "So, I'm going to hold treatment today. Your white blood cell count is very low and we can't give you any more chemotherapy right now."



No, my treatments are perfectly timed so I'll feel well enough to get married in less than four weeks.


There can't be any change in the plan!

"What?" I asked because I couldn't make any other words come out. Dr. Gorsky knew about the wedding, and she knew how well I'd timed my treatments. "We can try again on Wednesday. If the blood is ok, we'll do treatments on Wednesday, Thursday and Friday. That way we can at least save the week. But if the cells are still low, we have to wait until Monday. It's too dangerous and you could get a very serious infection and end up in the hospital." I nodded and fought back tears, "I need to be ok for my wedding." "I know you want to get married, but I have to do what's best for your health." I knew she was right, but that didn't make me feel any better.

"How low is my count?" I asked. "You're at 700 and we need you to be at 1000," Dr. Gorsky explained. "Is it possible it'll go up enough in two days?" Dr. Gorsky thought for a minute, "Yes, it's possible. But you should definitely be ok by Monday."

No! Monday is too late. It has to be this week.

"Is there anything I can do or eat or take to make the counts go up?" Dr. Gorsky shook her head, "All you can do is wait. There is a shot I could give you, but because you're having radiation too, it isn't a good idea." Gee, now I'm really glad I chose to go ahead with the radiation. Grrrrrrr! "Why did this happen?" I asked. Dr. Gorsky said, "It's the chemotherapy affecting your bone marrow. And the radiation makes it worse. It happens. It will come back up, but you need to watch for fevers and call us immediately if you have one."

Ok, now I'm really scared.

I had nothing left to say until my mom reminded me of the list of questions I was carrying, which now seemed trivial. I mean, one of my questions was about using self-tanning lotion for the wedding. Now I have to hope I'm well enough to even have a wedding!

This blows.

I spent four days crying because I didn't want to start another chemo cycle, and now I'm crying because I do.

I told Dr. Gorsky I'd see her on Wednesday, and we headed out to the reception desk. Since I hadn't been feeling well, the doctor had suggested I go to the chemo area and have them give me some IV fluids anyway. Can't hurt, right?

As soon as I was released from Sloan-Kettering, Jimmi drove me right home. I've been on the couch resting ever since. I'm resting my body and resting my blood. I'm willing the white cells to rise with my brain.

Don't laugh! It can be done!

When I was in labor with Dylan, my contractions were totally irregular and I was taking forever to dilate. The doctor started me on Pitocin, and Dylan's heart rate dropped immediately. They were able to get it back up, but I made them stop the Pitocin because I was convinced that was the problem. My OB agreed as long as I dilated 1 cm per hour from that moment on. So I set my mind to it. I concentrated. I thought about it. And I dilated EXACTLY 1 cm per hour until I was ready to deliver my little pumpkin.

So that's what I need to do. Mind over matter. I WILL get my white cell count up. I WILL have my treatments this week. I WILL be ok for my wedding.




But, if you can, some extra prayers wouldn't hurt either, please.

Thank you.

Sunday, August 7, 2011

I'm a Princess

I want so badly to write about my wedding dress fitting today.

I want to write about how perfectly it fit, how beautiful it made me feel, how amazing it will be to wear it for Jimmi on September 3rd. I want to write about how I felt like a princess when I turned and saw my friends and my mom staring at me with tears in their eyes. I want to write about my fabulous shoes and my delicately detailed headpiece.

But I can't.

All I can think about is starting my second cycle of chemo tomorrow.

I don't want to go.

Can I skip it? Can I just go to the movies instead? Maybe go back to the bridal shop and put my dress on again? How about I have my head shaved? Oh, wait, already did that.

Anything else other than chemo will do just fine.

But that's not gonna happen. I don't have a choice. I need to make sure my harness is still fastened as I round the second loop of my roller coaster.

I got a call on Thursday confirming my 9:00 AM appointment on Monday with Dr. Gorsky. Wait, that must be a mistake because I don't make early appointments for anything. "I didn't know I had a 9 am appointment with Dr. Gorsky," I said with exasperation. "Well, the appointment was made back in July," the snippy receptionist said. "Ok, that's fine," I tried to be calm, "but no one told me about it. Can I please make it a little bit later?" The receptionist put me on hold for a few minutes, then I heard, "Ma'am? I can't make it later because your treatment that day is six hours long." I was so confused. "What treatment? I'm supposed to have treatments on Tuesday, Wednesday and Thursday." I snapped. "Well, I have orders here that say they're starting on Monday." I couldn't pretend to be calm any longer. "And when am I supposed to have my radiation treatment if my appointment with Dr. Gorsky is at 9 and my chemo treatment is immediately following that?" She breathed loudly and I could almost hear her roll her eyes, "We don't have anything to do with that. I can transfer you to radiation scheduling. Hold on."

I was livid. Why did they keep scheduling me for appointments without my knowledge? The only way I ever hear about these things is when they call to confirm. In our last appointment, Dr. Gorsky told me my chemo treatments would always be Tuesday, Wednesday and Thursday. Now they're Monday, Tuesday and Wednesday? Get it straight, people! I have a group of caretakers who need to plan their lives around my schedule and it doesn't work if you keep changing it!

"Ms. Paragano? How can I help you?" The radiation scheduler asked. "Yes. I just wanted to check what time my treatment is scheduled for on Monday?" I heard some typing, then, "You're in at 7:45." I almost choked on my water. "In the morning?! Yeah, that's not happening. Can't we make it later? Why did everyone schedule these appointments without my knowledge? I promise, you don't want me there at 7:45 in the morning. It won't be a very good day for anyone in my path." At least she giggled a little bit and said, "Thanks for the warning. Unfortunately, we're totally booked before your appointment with Dr. Gorsky, so we have to keep you where you are." I took a deep breath. "I'm not blaming you for this, but how does this make sense? I'm scheduled for radiation at 7:45. It'll take 15 minutes. Then my appointment with Dr. Gorsky is at 9:00. What am I supposed to do from 8-9??" She agreed that I had a valid point, then suggested I try and go to the third floor after my radiation treatment to check if the doctor could see me sooner.

What crap!

So, I have to do what they say. I'll be up bright and early tomorrow morning to fight traffic so I can rush around and get my second dose of poison. I'm terrified. I'm sad. I'm exhausted. I'm nauseous and I have diarrhea. Now I get to start all over again and build on the symptoms that are already there. I have a feeling I won't be able to post for a few days, but I'll get back to it as soon as my brain allows me to think clearly again.

Until that time...Good night. Sleep well.

Saturday, August 6, 2011


Well, it's gone.

I am currently sitting here donning a wig that, from what everyone keeps saying, looks completely natural. It certainly doesn't FEEL natural on my head, but I can't really complain, can I?

It was a difficult morning. I woke up at about 7:30 AM and hit the shower. I hadn't washed my hair since Wednesday because I was scared of how much would fall out in the process. But since I was going to have it shaved anyway, I figured I'd give it one more shampooing just to make sure I was doing the right thing. And after running my hands through my wet hair and pulling out clumps, I knew it was definitely time. I got out of the shower, wrapped a towel around my head, and one around my body and just stared at the mess on the shower floor. Jimmi had just woken up and walked into the bathroom to brush his teeth. "Look at that," I pointed at the wet, black tumbleweeds. Jimmi's face turned to pity, "Oohh, I'm sorry, pumpkin. But you'll be sexy to me no matter what!" I gave a quick, half smile, then proceeded to pick up the entire head of hair in the drain, wrap it in toilet paper and throw it away. I didn't dare to dry what was left on my head - which wasn't much, by the way. I just brushed it gently (it still continued to fall out) and threw on a baseball cap with a teal and white ribbon on the front.

Jimmi and I left the house at 8:30 AM and headed to New York City for my 10:00 AM appointment. I knew we'd probably be there for a while. Between the fact that I was basically an "emergency squeeze-in", and that I'd need to be shaved bald, then have my two custom pieces fitted and cut, I was figuring at least three hours.

We arrived at Joseph Paris Salon after hooking up with my mom in The City. It was about 9:45, so we were actually early, for a change! We headed to the ninth floor and rang the bell so we could be buzzed in. Linda, the receptionist who had managed to fit me into the schedule, greeted us with a warm smile. "How are you feeling?" She asked politely. I shrugged and let out an, "Eh." "Well," Linda continued, "You look much better than the first time you were here. You seem much more at ease with everything." I laughed drunkenly, "Yeah, I took an anti-anxiety pill about a half an hour ago. I guess it's working."

As we waited, we spoke to Linda a bit. She was a very friendly women who was probably in her 50s. She was upbeat and outspoken. "Oh!" I remembered something, "Please don't let me leave here without a steamer for the synthetic piece." The only way to style the non-human hair wig is with a steamer because a hair dryer or flat iron would melt it. "Don't worry," Linda assured me. "I'll remind you. And I have to give you a head, too." My mom and I looked up and the same thought went through our dirty minds. "Oh?" I looked at Jimmi. "Lucky you!" Neither Jimmi nor Linda realized what she had said until I made that comment, then Jimmi turned beet red, shook his head and covered his face and Linda started laughing out loud. "Wow! I should watch what I say around here!" she giggled.

At about 10:15, a young stylist who looked like he belonged in a Beatles tribute band emerged from the back room. "Suzanne?" We stood up to meet him. "Hi, I'm Joel. Come with me." My mom, Jimmi and I caravanned to a small, private room with a hair dresser's chair, a sink with a neck cut-out and a large mirror above it. There were hair and wig products all over the counter, and a window that overlooked 34th Street. While Joel went to grab a few more chairs, I sat down in the seat in the middle of the room and took off my hat. My hair was still damp from the shower, and you could really see how thin it had become in just four days.

Joel came back with the chairs, then turned his attention to me. "Are we taking off your hair today too?" he asked. I looked at him sadly, "Won't we get a better fit for the wigs that way?" Joel said we would, and I continued, "I think it's all about to fall out anyway." He started to run his fingers through my recently fine locks and what was left started to come out in his hands. "Is it starting to get tangled and matted when you wash it?" he asked gently. I nodded. "I think you came in a the perfect time. If you had waited any longer, you would start to get really knotted up, almost like dreadlocks. That would irritate your scalp and make it pretty painful. Even shaving it off would be more difficult because I'd need to lift each dreadlock and be very gentle so I didn't hurt you. You really have perfect timing." Ok, I guess I didn't jump the gun. So glad my mom urged me to call for an appointment as soon as the hair started to fall out.

Joel explained that he was going to cut my hair in sections before he buzzed it, that way, he would be able to save the long pieces in case I needed to add them to my human hair piece. He clipped up the top of my hair and I looked down and closed my eyes. I couldn't watch. "I hope you don't mind if I cry," I whispered. Joel looked sympathetic, "Cry all you want. I'm used to it. But if you cry a lot, I might end up crying too." I laughed and sniffed back some tears until I couldn't contain them anymore and they began to drip down my cheeks. Snip, snip, snip went the scissors, and I saw Joel lay a long chunk of my hair on the table in front of me. Snip, snip, snip. Another chunk. I kept my head down and my eyes closed as he cut, until Joel asked me to lift my chin. I obliged, and then I opened my eyes and looked into the mirror. My entire head was chopped except for one, last, long lock right in the front. "Whoa! You look like a Goth chick!" Jimmi joked. I didn't want to smile, then something inside me snapped and told me it was going to be ok. It's only hair. It's a new adventure. I can do this! Joel snipped off the last piece and placed it on the table with the others. Then he whipped out the electric razor and went to town. "Let me know if I'm hurting you," he said carefully.

Buzzzzzzzzzzzzz! Buzzzzzzzzzzz! Buzzzzzzzzzzzz!

I actually watched as the last bits of hair were removed from my head. I talked and smiled and was fully at peace with what was happening to me. When the buzzer finished its job, I immediately noticed the cool breeze of the air conditioning on my bald head. Wow. I've never been bald. I was even born with a full head of thick, black hair. I checked myself out in the mirror and thought about Demi Moore in G.I. Jane. A Fighter. She was fighting for her country, I'm fighting for my life. It's a good enough comparison, right? I turned from side to side. "Can I touch it?" Jimmi asked. "Sure," I agreed. "But no pictures."

Joel left the room to get my hair pieces. I continued to stare at myself, then I touched my head. It felt like the stubble on my legs when I haven't shaved them in a few days; though, that's not much of an issue anymore. One benefit of chemo, I guess. "Ok, fine," I gave in. "You can take pictures." Both my mom and Jimmi grabbed their iPhones and snapped away. I handed Jimmi my Blackberry (stupid iPhones!) and had him take one more. He handed my phone back, I checked out the photo and sent it to Facebook. What the Hell? I thought. Everyone knows I'm doing it. What do I have to be embarrassed about?

Within minutes the comments were flying! "Beautiful!" "Rock Star!" "You go girl!" My friends were sending support when I needed it most. My heart was full as I read each comment that came through, and suddenly being bald didn't seem so bad.

Joel returned with my hair pieces - one synthetic for every day wear, and the other, human hair, for special, a wedding, perhaps. "Which one are you planning to wear today?" Joel asked. "The synthetic one," I replied. "Ok," Joel said, "Let's start with the synthetic, then we'll move on." He put the wig on my head, and I instantly looked like myself again. "We need to add a pleat to it so it fits a little tighter," Joel explained. He removed it from my head and brought it to the back to have it fixed.

A few minutes later, he was back and the hair was on my head again. Joel started by measuring exact placement. He had me take my hand and line four fingers up from the bridge of my nose to the top of my forehead. "That's where your hairline should be," he informed me. Joel cut off the extra lace from the piece that sat on my forehead, then asked me to take the tips of my pointer, middle and ring fingers and put them starting at the corner of my eye going back to my hair. "That's where the side hairline should be," he explained. Then he cut off the extra lace and hair to create a natural line across the side of my face. He repeated the steps on the other side of the piece, and then began my haircut. Trim, snip, cut, shape. Done! Then Joel said, "I'm not going to tape it on yet because we still have to cut the other piece."

Off came the synthetic hair and I felt the newly familiar cool breeze on my head. Then Joel brought in an extra long wig of human hair and placed it on me. "This is really long!" he exclaimed. "I feel like Rapunzel," I giggled. "Someone actually grew their hair this long and then donated it?" I asked. "Even longer," Joel said. "You lose about two inches in the knotting and tying." Wow. The hair was literally to my waist. I almost felt bad knowing I was going to have Joel cut it...a lot.

He repeated the same process as he did with the synthetic piece. Measuring, placing, cutting. I left this one much longer, though. Since this is the hair I'll be wearing on my wedding day, I wanted to make sure there was enough length so my own hair stylist would be able to cut it how he wants it for my perfect day. When Joel was finished, he removed the piece, wrapped it in tissue paper and urged me to leave it alone and keep it flat so it would stay in good shape for the wedding. Since this piece was made from real hair - including some pieces that were cut from my own head two months ago - it could be styled with a hair dryer, curling iron, flat iron or any other normal hair product. That's why I chose to use that one for my wedding day.

Joel brought back the synthetic wig and said, "Ok, now I'm gonna show you how to tape it and put it on." He turned the hairpiece inside out, brought out some double sided tape and showed me the four areas around the inside lace to stick it. "Only stick the one side and leave the paper on the other until after you get it in place," Joel told me. "There are two ways to put it on. Either hold it in the front with your head down and flip it over, then pull it down in the back, or pull it on from the back first. Just make sure you pull it down further on your forehead than necessary to start. It's easier to pull the hairline back than forward."

I gave it a few tries with Joel's help. "It'll take you about two weeks to get used to it, then you'll be doing it like it's nothing." After it was placed where it belonged, Joel helped me pull off the backing of the tape and we stuck the hair down on my head. "Can I sleep with it on?" I asked. "Yes," Joel assured me. "I wouldn't leave it on for more than a week, though, because the tape might stop sticking."

Joel gave me instructions on removing the tape with rubbing alcohol, washing the human hair piece in sections with shampoo and washing the synthetic hair piece with dish detergent or synthetic wig shampoo. Then he gave me a tip for keeping it soft, "Leave it in a bucket of water with fabric softener for ten minutes. That'll make it look much more natural." Who knew? I was also happy to hear that I didn't need to purchase a small steamer since the one we have at home for our clothes will work just fine.

When he was done with my lessons, Joel walked us out to the desk. I couldn't believe it was 2:30! We had been there for over four hours!! Linda complimented my new look and handed me two bags. "It's your started kit. There's tape and a comb in here. Your other hair piece is in there. Oh, and, of course, I'm giving you your head!" I chuckled as I looked in the bag at the styrofoam head and thought about our earlier conversation.

Linda wished me well and made me promise I'd come back and show her wedding pictures. Then she gave Jimmi and I a hug and we were finally ready to leave.

We got into the elevator, and I immediately turned to look in the mirror on the far wall. Will anyone be able to tell? Do I care if they can? I can't believe I'm bald. I can't believe I have cancer. I can't believe I'm getting married in less than a month. I can't believe I'll be wearing a wig at my wedding.

Then I looked at Jimmi and my mom and more thoughts went through my head...

I can't believe I'm lucky enough to have them. And not just them. I can't believe how much stronger my relationship with my dad has become. I can't believe how much support my friends have shown. I can't believe how many kind e-mails I've gotten from strangers.

Cancer is such a horrible disease, but in some ways, it has brought joy to my life. Is that strange? This terrible, awful thing has taught me what real love is. It has taught me not to sweat the small stuff. It has taught me what is truly important in my life.

I have my kids. I have Jimmi. I have my family. I have my friends.

Nothing else matters.

Tuesday, August 2, 2011

Hair Today, Gone on Saturday?

It's decision time again.

Another big one.

My hair.

I thought my hair was starting to fall out yesterday, but now I'm sure of it. I didn't wake up with hair on my pillow like everyone said I would - maybe that'll happen tomorrow. But when I brushed it this morning, I pulled the brush away to find a disturbing amount of long, black strands left between the bristles.

"Jimmi!!" I cried loudly. My fiance came running up to the bedroom, "What's the matter?" "Look!" I shouted as I shoved the brush into his face, "It's falling out!" I nuzzled my face into his chest and bawled like a little baby. "Don't worry!" he tried to reassure me, "Maybe it'll stop." I knew he was trying to help, but honestly, why would it stop? I've only had one chemo cycle and I have three more to go. It's not gonna stop.

Jimmi hugged me while I cried, then I pretended to be ok so he would go back downstairs. As soon as he left the room, the tears began to fall again. I looked at the hair in the brush and on the floor. I ran my fingers through the locks still on my head, and pulled out a few fingers full.

I felt sick.

But still, I pressed on. Off to radiation we went. Today is Tuesday, and I knew I would be meeting with Dr. Sidebotham again to talk about this week's side effects. I definitely had a few questions for her. Aside from the bowel issues I was having, I also found a weird rash on my arm in while I was in the shower. Of course, my first thought was that the chemo did something to my blood or bone marrow and I'd need shots or a transfusion, but I tried to think positive and forget those thoughts for the time being.

My treatment was pretty uneventful, except for the involuntary leg movements that seem to get worse each time I go. I needed to ask the doctor about that, too. I waited in the changing room until my name was called, then I asked the tech to get Jimmi from the waiting room. We met in the exam room right before nurse Eileen came in to take my vitals.

"How are you today?" Jimmi asked her politely. "Not good today," she responded grumpily. "I didn't sleep well last night." Great, I though. Nurse Ratched at our service. Eileen took my blood pressure, temperature and weight, then ran through a battery of questions. She smelled like tuna fish, and quite honestly, I just wanted her to get her grouchy self out of the room. Then I remembered my rash. "What does this look like to you?" I asked her. Nurse Fishbreath took a look and said, "Looks like you were scratching it." I said, "I didn't scratch it. I noticed it in the shower." She looked again, "And did you scratch it?" I was getting pissed. "No," I answered honestly. Then she took my right hand, held my pointer and middle finger to the red marks on my left arm and said, "See? Looks like these two fingers scratched it."Ok, don't freak out. Just chill! "Oh, ok." I managed, and held my tongue from saying the other words I had on my mind. "Dr. Sidebotham will be in soon," Eileen said, then she left the room. Good thing, too, because I might have used the nails on my pointer and middle fingers to scratch her eyes out!

There was a knock on the door a few minutes later. "Come in," I called. Dr. Sidebotham entered the room with a friendly face. "Hi! How are you feeling? You look much better than when I saw you last week!" I smiled, "Yes, I'm feeling much better today." Then came the bowel discussion. "I feel like my rectum is shrinking," I said with an embarrassed giggle. She didn't seem phased by my statement. "I promise you, it's not shrinking. There's a lot of inflammation in there from the radiation," she explained. "It's very normal after 11 treatments to feel like you have to go, then nothing happens. And it's a bit painful and uncomfortable." There was actually a name for my condition, though I don't remember what it was. "I'll prescribe a suppository you can use twice a day that will calm everything down in there, and hopefully make things a little easier for you." Awesome, I thought. Now I get to stick things up my ass! I turned to Jimmi, "Bet you really wanna marry me now!" I joked.

After a bit more butt talk, I remembered to show Dr. Sidebotham my rash. She didn't seem at all concerned. "Put some Cortizone cream on it today. If it doesn't get better, I want you to show it to Dr. Gorsky tomorrow. But I really don't think it's anything to worry about." At least she didn't think I scratched myself!

"Oh, one more thing," I said, though I was afraid to ask the question for fear of the answer. "Every time I go for a treatment, my legs start to twitch. Is that going to ruin my treatment and cause serious side effects? I really can't stop it." Dr. Sidebotham smiled again. "You're strapped into the mold, so you couldn't possibly move enough to make a difference. Don't worry. You'll be fine." I think all doctors should take lessons in bedside manner from Dr. Sidebotham. With each answer she gave, I felt more and more relaxed. What a great doctor.

I went back to the changing room to get my clothes on. As I took my tank top and sundress out of the locker, I noticed long, black hairs all over them. I picked each hair off and threw them in the garbage. There were so many of them! I turned the clothes right-side in, then put them over my head. My hair was tucked inside the top, so without thinking, I pulled it out from the back of my dress. When I looked at my hand, my heart sank. Another handful of hair.

I met Jimmi in the waiting room. "It's really falling out," I frowned. Again, he told me not to worry as we headed for Panera. We ate quietly as I thought about my hair. It was so hard to resist playing with it since it's something I constantly do without even thinking. But I was scared. Scared to touch it. Scared to run my fingers through it. But then I forgot, and I did just that. More handfulls. I showed Jimmi again. "Ok," he said, "You knew this might happen. Don't worry!"

We ran a few errands and eventually came back home. Jimmi went outside to work on his car and I called my mom. "Mommy, it's falling out," I sobbed. She tried so hard to be calm. "This will be the hardest part for you," she said. "No matter how much you plan for it, you can't really prepare yourself." I sniffed a few times, "Should I just shave it off? I can't watch this happen anymore. I can't even have my wigs fitted until I'm bald, so should I just have them shave it?" She thought for a minute, "If that's what you want to do. Maybe you should call the wig place and see when most people come in. Do they usually wait?"

I took her advice. "Thank you for calling Joseph Paris, this is Linda speaking," Said the friendly voice on the phone. "Hi Linda, this is Suzanne Paragano. My hair is starting to fall out and I want to know if I should come in now or wait a bit longer?" She was quiet as she thought. "It's really up to you, but most people find it harder to watch it fall out than to just have Joseph shave it and fit them for the wig." That's what I thought. I begged her to squeeze me in on Saturday, and she agreed. Then I confirmed that both of my custom hair pieces were in and ready to be fitted. She checked the computer and let me know that they were both there, then I told her I'd see her Saturday and hung up.

I know it sounds like I'm jumping the gun on this. I know I should probably wait a little bit longer and see what happens, but here's my problem...

Time. I don't have time.

I'm getting married in 32 days. That's just a little over four weeks. I need to have my head shaved to properly fit the wigs. If I don't do it before Saturday, I'll be out of commission for at least the next two weeks because of chemo. If my hair really falls out during that time, I won't be able to do anything about it. Then, once I'm feeling better, I'll need to have my final wedding dress fitting and run around doing last minute errands for the wedding. Do I want the added stress of having to find time to go to the city to have my head shaved and learn how to put on the wigs a week before my wedding? My hair is gonna fall out anyway, right? Isn't it better if I take control of it and decide when it will be gone? Am I just trying to make myself feel better? Am I being stupid? I don't know the right answer.

I just want this all to be over.

Monday, August 1, 2011

The Joys of Radiation

So, I'm starting to have some radiation side effects.

No, not the major scary ones I was worried about. I won't know if I'll be dealing with any of that until the treatments are over. I'm talking about the "mild" side effects like fatigue and diarrhea. They started after about the seventh treatment, and my time in the bathroom hasn't been the same since. But, hey, at least I'm not constipated anymore!

Today was my 10th treatment, and also picture day. Every Monday, before the treatment, I'm positioned and strapped into my mold and told to stay completely still for "pictures". What they mean is that they'll be taking x-rays of me in the exact position I'm placed in every day to make sure my bones and internal organs are lined up identically each time. It's one of the ways they make sure to avoid any major side effects.

I waited in the changing area until Janice, one of my three techs, called my name. Last week, when I came in for treatment, Janice had surprised me and made two CDs for me to listen to while I was in the machine. One was a Motley Crue mix and the other was a Skid Row mix. That made her my new favorite person! As I followed Janice down the hall, I said, "Thank you so much for making those CDs for me. Maybe we can start on the fourth song of the Motley Crue mix today, since that's where I left off on Friday?" But before she had a chance to answer, I heard Skid Row blaring from the player in the treatment room. Janice went to change the disc and I stopped her before she had a chance, "Don't worry! Skid Row is perfect!" I said with a smile.

I removed my outer hospital gown, kicked off my flip flops and sat on the table. I knew the routine by now. I was asked to identify my photo on the screen, confirm my birthday then place my head back on the foam pillow. I allowed my body to be moved into whatever position Janice and Bob needed it to go, while they checked to make sure my tiny tattoos lined up perfectly with the lasers. I held my breath as the freezing cold mold was placed on top of me and locked onto the table. I allowed them to readjust my legs, and breathed again as the hard plastic warmed to the temperature of my body. "Ok, hold still for pictures," Janice said before she and Bob left the room.

I wanted to do as I was told, but my body had other plans. After holding completely still for about five minutes, my right leg began to twitch. "Stop it!" I scolded with my mind. My leg obeyed for a minute, but then my left thigh decided to join the game. Without permission, it also began to shake a bit. Christ! I thought to myself. Can't I just hold still? Well, at least it's only pictures now and not the actual treatment.

Janice walked back in, adjusted something on the machine and said, "Stay still for treatment," and she was gone again.

"Ok," I told myself, "ten buzzes and I'm outta here. Just stay still and sing along with Sebastian Bach." I closed my eyes and tapped my fingers gently to the beat. BUZZZZZZZZZ! Went the machine. One. Click, click, turn...BUZZZZZZZZZZ! Two.

Oh shit! My leg just moved! Oh no! BUZZZZZZZZZZZZ! Three. There it goes again! Why is this happening? I can't move! If I move, I'll end up with a colostomy bag! Stop moving! My muscles tensed and my hips began to ache. Click, Click, turn...BUZZZZZZZZZZZ! Four. Ok, I think I got it under control. Wait, now my hip is moving! Stop!! BUZZZZZZZZZZZ! Five.

Halfway there.

Ok, breathe deeply. In through the nose, out through the mouth. You can do this. All you need to do is stay still. BUZZZZZZZZZ! Six. Oh, my hips and thighs are hurting! Honestly, ten minutes is not a long time. But I want you to try to stay in a position someone else puts you in without moving at all for that long, and see how well you do. Oh, and make sure they strap you down. BUZZZZZZZZZ! Seven. Click, click, turn...BUZZZZZZZZ! Eight.

There they go again! Now it's both legs! Why are they doing this to me? They're ruining my treatment! I want to lie still. I want to do exactly what I'm told. Why won't my body cooperate? BUZZZZZZZZZZ! Nine. One more. Just ONE more. Click, click. Stop. Why did the machine stop before it turned? Why isn't it moving? Oh no! More involuntary movements. Ok, the machine in moving again. Turn. BUZZZZZZZ! Ten!

I won't move until Janice or Bob come in to get me. I know I'm done after the tenth buzz, but I always like to make sure. I mean, what if I miscounted?

Bob came walking into the room just as the song changed from "Youth Gone Wild" to "Slave to the Grind." "All done!" he sang. Oh, thank GOD! My body relaxed and I watched as Bob unstrapped the mold and pulled my gown down to cover what's left of my girlie parts. I sat up, "Thanks, Bob. See you tomorrow." I hopped off the table and felt the soreness in my hips and thighs. It felt like I'd been working out for hours yesterday and I was suffering from the effects of it today. I wish. It's been so long since I've been able to go to the gym.

I hobbled back to the changing room to get dressed. I was so disappointed in myself for letting my body take over my brain. Why couldn't I just hold still?

I plan on talking to Dr. Sidebotham about this tomorrow during my Tuesday check-up. I need to make sure these involuntary twitches won't ruin my treatments, or worse, my internal organs. I keep thinking about everything that can go wrong and I'm scaring myself to death.

On another note, I think my hair is starting to fall out. There's just a little more on the shower floor after I wash it, and a few more strands between my fingers when I play with it. And when I pluck the grays (which I really shouldn't do, at this point), they come out with less than a little tug. I wonder if I can just hold onto it long enough to get married with clip-in extensions and not a full wig? That would be super cool. Jimmi says I'll still be sexy when I'm bald.

Jimmi is full of shit.