Monday, June 20, 2011

Why Can't I Decide What I Want?

I'm so swollen.

I'm swollen in places I didn't think had anything to do with having a hysterectomy.

And the numbness sucks!

Seriously, why is my right thigh numb? Anyone? And why is my right hip four times the size of my left hip? Ok, I get it. I had major surgery less than a week ago and it'll take time to heal. But this is nuts! I'm a prisoner of huge T-shirts and loose-fitting sweats. Unfortunately, my closet has a very small supply of both items. Luckily, I thought ahead and bought a few pairs of sweats pre-surgery, but I wasn't prepared for the T-shirt issue. Each day, I throw on one of my shirts, look in the mirror at the way it hugs the disproportionate lumps all over my abdomen, sigh in frustration, and ask Jimmi if I can borrow another one of his shirts.

I look like a bruised potato.

No lie. I have five incisions in different locations all over my belly. The main one, where I think they pulled out my innards, is about an inch above my belly button. That one is probably an inch long. Then there are two others, each about a half-inch long, and each about three inches away from the main one, one to the right of it and one to the left. About four inches to the right of the cut on the right is another half-inch cut. That one is basically on my side, about four inches above my right hip. Then, move back over to the left, and you'll see one more half-inch slice about three inches below the one that's immediately to the left of the main cut. I'm pretty sure the surgeon placed that one where it is, and not directly opposite the one on my right side, to avoid the beautiful butterfly-topped cherry blossom tattoo that travels down my ribcage to my hip.


There are five bright red lines scattered all around my mid-section. I was told that five is actually better than one. I'd only have one large line if there were complications with the robotically-assisted surgery and they needed to cut me open and really dive in. But there weren't any complications. I'm not totally clear on exactly why they needed five holes, but I know there's one for the removal of parts, one or two for the robot and one or two to blow my abdomen up with gas to make it easier to see inside of me. I assume the last site of entry was used for the camera they needed to see what they were doing in there.

So, here I am. Almost a week after surgery, and still feeling pretty crappy. The pain has gotten better, thank God. But I feel like I've been hit by a train. After five days of unbearable stabbing in my shoulders, of all places, I'm pretty sure that's subsided. Now I feel like I'm nine months pregnant. My stomach rests on my thighs when I sit down. My right hip isn't only a muffin top, it's a whole friggin' layer cake. And the weirdest area of swelling of all is, brace yourselves, my right outer labia. Yes. The right outer lip of the only womanly part I have left is so engorged, it looks like I have a testicle.

Oh, so sexy!

It was traumatic when I finally got into the shower a few days ago and started to wash that area. "What the HELL is THAT?! Jimmi!! Look at this!!" The poor guy came running into the bathroom thinking there was really something wrong. "What? Are you ok? What's wrong?" I pointed between my legs. "What IS this???" I cried. He just looked at it with a completely concerned face. Then I could see the corners of his mouth quivering. He tried so hard to keep his composure, but it was a losing battle. "Hahaha! I'm sorry, Pumpkin. I'm sure it'll go back to normal. Give it time!"

Grrrrrr. Thanks a lot.

That description of my bodily distortion is what led me to call the radiation oncologist's office today. They had called me last week to schedule my radiation simulation for tomorrow morning. From what I remembered the last time we spoke, Dr. Sidebotham said the simulation entails making a mold of my body to ensure I'm in the same position each time I go for a radiation treatment. They will also insert a dye-soaked tampon into my vagina to make sure they see the canal on the x-ray so they know exactly where it ends. Then they'd mark each area to radiate with a small, blue tattoo. After one look at my body this morning, I laughed and said, "Yeah, not happening."

This is not MY body. If she wants me to be in the same position each time, we're gonna need to wait until Mrs. Potato Head leaves the building. Not to mention the fact that I'm pretty sure a tampon wouldn't even fit where it needs to go with my girl-balls blocking the way.

I called to reschedule and the receptionist said the nurse would get back to me. In the meantime, I thought about something my mom and I had discussed yesterday.

Why can't I just wait to have the treatments until after my wedding? Would it really make a difference?

We rehashed the questions again. When Dr. Leitao told me what the plan would be for my surgery, no one was in a hurry. It was fine to wait a month and a half to remove the cancer. It's a "slow-moving cancer", he had said. Even after he found out it was Small Cell, a more aggressive cancer, it didn't become an emergency. No one thought there was a need to move up the surgery. It was still ok to wait and harvest my eggs and do extra testing and chill out until June 14th. No problem.

All the doctors decided that starting treatments a about a month after surgery would be ideal. One of the cells might have gotten out and now it's hiding somewhere. "We need to do radiation and chemotherapy as a precaution, just in case," they would say. Ok, I understand.

But here's my problem.

I had been going for regular pap smears every six months because they found abnormal cells about two years ago. The second the results changed from mild to high-grade, a LEEP was performed immediately to remove the questionable cells. That's when the cancer was found. According to what the doctors can tell, it was caught very early. Since the discovery, I've had every test known to man: MRI, CT Scan, PET Scan, etc. Nothing was found. They couldn't even see anything on my cervix in the later tests - and actually said it may have all been removed in the LEEP in April - but they really needed rip out my reproductive system just to be sure. After my surgery last week, Dr. Leitao said that there was nothing visible anywhere in the parts he removed, and that was a good sign. We still need to wait for the pathology report, after they chop up my lost organs into tiny pieces and test them thoroughly, to know for sure, but it's a good start.

All that being said, I ask the question again. Why can't I wait to start radiation and chemotherapy until after my wedding? At this point, if I start when they want me to, it won't be until mid-July anyway. Will six more weeks make that much of a difference if the pathology is clean? Obviously if the report shows spreading, I'd nix the entire idea and do whatever they want.

But what if it shows nothing?

My phone rang this afternoon. "Hello?"

"Hi Suzanne, I'm calling from Dr. Sidebotham's office. You have a question about rescheduling your simulation?"

"Yes, I'm really swollen. I don't think you'd get an accurate mold at this point. I was wondering when they called last week if only one week post-op would be too soon."

"I understand. Yes, it really is too soon. We'll schedule you for next Monday and try again. The only reason Dr. Sidebotham tried to rush it is because you wanted to get it done before your wedding."

"Well, I'm actually wondering if I can wait until AFTER my wedding, at this point. Will the extra month or so really make a difference?"


"Hmmm...Let me talk to the doctor and I'll call you back."


Hope? Maybe?

My mom and I talked about it again and still agreed that there should be more discussion. My mom insisted that my recovery will depend, not only on my physical well-being, but also my mental well-being. If I have my wedding to look forward to, without worrying that it will need to be canceled at the last minute, I might fight harder in the long run. "They need to look at the whole patient," she said. "It's not only a medical issue. A lot depends on the mental aspect of all of this, too."

The phone rang again. "Hello?"

"Hi Suzanne, it's Eileen from Dr. Sidebotham's office again. I spoke to the doctor and she said it's just not possible to wait that long. The optimal treatment period is within a month after surgery. You'll start your treatment on July 11th."

Anger. Rebellion. Defeat.

"Fine, I'll start before my wedding, but I want to wait one more week until July 18th. My bridal shower is on the 17th, and I'd like to at least get through that without feeling like shit."

"Well, that's fine, but you'll probably still feel ok on the 17th if you start on the 11th."

"How's that possible if I'm starting chemo the same day I start the radiation?"


"Oh, you're doing chemo too? Well, they can bring you in and give you hydration. I'm sure you'll be ok."

My blood started to boil and all of the back-talk I'd had under control for the last two months finally broke free.

"Oh, really? Yeah, I'm pretty sure I'm not gonna risk that since they told me days four and five of each chemo cycle will be the worst. And since that will be my first cycle and I have no idea how my body will handle it, I'd prefer not to risk it. I'd like to wait until the 18th."

"Ok, you can do that. But if you start on the 11th, you'll be done with your treatments before the wedding."

"Not the chemo."

"Ok, but if you start on the 18th, you'll be at the height of the side effects on your wedding day and you might have terrible diarrhea."

This woman is pissing me off. I seriously want to hurt her like she's hurting me.

"How many days until the peak of the side effects?"

"About 10 days."

"Ok, so how does 10 days after July 18th turn into September 3rd?"

"Well, they start 10 days after, but the effects last through the five and a half weeks of treatment and continue for a few months after."

"Ok, so what difference does it make whether I start on the 11th or the 18th? Based on that time period, it's gonna ruin my wedding day either way, right?"

"Well, it might start to ease sooner if you start on the 11th."

"Fine. I obviously have no say in what's happening to me. Schedule it whenever you want. I'll do whatever you say."

"You have a choice, I'm just letting you know what could happen."

"I understand that. But if my wedding is gonna suck anyway, I'd at least like to enjoy my shower."

"It's up to you, but you need to let me know what you want because it's not only YOUR schedule we're dealing with here."

Oh, you did NOT just say that. You BITCH! Do you think this fits ANYWHERE into MY schedule? I spent the last two days assembling, sealing and stamping 108 wedding invitations I may not even be able to send out!

"You know what? I'll be there on Monday for the simulation. I'll have an answer for you then."


Beaten down.

No choice.


"Don't worry," Jimmi said as he hugged me. "We're not making any decisions until we talk to Dr. Leitao next Friday and he tells us what the pathology report says," my mom reassured. I was too weak to respond.

I looked over at the gorgeous, silver envelopes addressed with elegant, black calligraphy sitting on the counter. I couldn't even force a smile. I'm supposed to be excited. I'm supposed to be happy. I'm supposed to be counting down the 75 days left until I become Mrs. Kane.

But I'm not.

Three words keep circling around in my head. I'm trying so hard to keep them at bay, but they're pushing their way to the surface. What are those words?

I give up.

1 comment:

  1. how can ppl like that be so inconsiderate at times like this. you handled it beautifully. i would've probably cursed her out which wouldn't have helped anything.