It's Not Funny Anymore

So we've decided. I've decided. I'm going to have a hysterectomy tomorrow. I'm so sad.

Those words, "going to have a hysterectomy" were simply not in my vocabulary before. I don't think I was being naive or not facing the facts. It's just that I thought we had such a good plan in place. I thought I was doing everything that was asked of me. I thought "it was all going to be okay." But it wasn't enough.

Everyone is trying so hard to help. Asking what they can do? How am I feeling? Do I need anything? I can imagine that my family and close friends feel helpless as I move through this next phase. But if you feel helpless, just imagine how I feel. I can't tell you what to do because I don't know what to do.

I go through swings of just sheer sadness. Sobbing. In the shower. In bed at night. In bed in the morning. In the kitchen. When Chris holds me. When I look at the dogs. When I see pregnant women looking so cute with their bellies. Sitting in church. Sitting here now. You just never know.

But then I'm also having moments of real clarity. Where the emotion subsides and the rational thought creeps back in. When I can see the wisdom of my choice despite the gaping hole it leaves in my gut ... physically and emotionally.

I was so afraid of making the wrong decision. God forbid you have your uterus removed then decide later you should have given the resection one more go. It's important to me that Chris and I are on the same page. I trust his judgement and listened to his reasoning. But I also knew, I got to choose. I didn't want to feel pressured into this and then resent Chris for it. Maybe that's why we are going through this now. Two years ago, we weren't in a good enough place to communicate honestly. I don't think I would have thought my opinion counted as much as I believe it does now. I don't want to disappoint Chris, but I know I don't want to disappoint myself either. My mom said we are a family, him and I, a small family of two, husband and wife, but a family that needs to decide the future of this family together.

I said my prayers. Talked to the handful of people who really matter. And I said my prayers again. Gregory Rannazzisi once said to me (before he was a priest, so you know he was destined for greatness) feel free to ask God for a sign. And if you think you might miss His subtle signs, ask him for a really obvious sign. Greg suggested a 2x4 hitting you over the head. I felt like I needed that 2x4 and I wanted the word "hysterectomy" or "re-resection" to be written on it in black sharpie marker.

God is more sophisticated than a 2x4, so he sent me a phone call with the man we've trusted since the beginning. Dr. Goldstein called from Boston. Like a good journalist, I took notes while we spoke. It's so easy to have a whole conversation then hang up and really have no idea what was said. So I'm creating a paper trail. He said and I quote, "Frankly, I think the long term best option is a hysterectomy." If that's not a 2x4, I don't know what is. One, he said it's the only way we can be reasonably sure I will be cancer-free. The uterus has cancer, chemo didn't kill it, taking the tumor out wasn't enough, so take the organ that has cancer out. Plus, he said, "You want to get on with your life."

And I do. I just want to get on with my life with three children. I've had to alter my plan pretty drastically so far. I'm willing to make some minor adjustments moving forward. But I'm determined to leave this world a parent ... of human children. (No offense to the dogs, "my girls.")

I try to focus on the positive: I won't get my period anymore. That's a plus. No need for birth control. Saving money on prescriptions. I try to inject a little wry humor into the whole thing until I stop for five seconds and remember what I'm really talking about. Like Chandler on Friends "I use humor to mask the pain." Now even the humor isn't enough.

Do My Friends Know Me ... Or Do My Friends Know Me??

I think a lot of times I'm an open book ... ie: blogging about every little thing ... but it's always nice to know that my friends really get me.

Backtracking a little ... before I went to Boston for the resection, I received two fun going away gifts. The first, from my neighbor Cindy, included fun snacks with a theme - a drinking theme!! Go figure. Some Nik'n'Nip candy bottles "A few nips for the plane ride home!" and some Jelly Belly jellybeans in Cocktail Classic flavors, "Some cocktails for the plane ride." So fun and a whole lot better than a mini-bottle of booze served on a plane by a disgruntled flight attendant. 

 

Another neighbor, Jeannette, came by with a going away gift along the same theme. This one though, had an Italian flare, in honor of our Italian doctor. It's a three-pack of Prosecco in mini bottles. She thought it might be easier to get them on the plane if they were close enough to the 3 oz. rule. One for me, one for Chris, one for Dr. Garguilo.  

 

Flying on September 11th, we chose not to take a chance with the Italian champagne, so we're saving it. Instead of it being a "glad the surgery went well" toast ... I think we'll hold off until I can say for sure, "I'm 100% Cancer Free!" I'll toast to that. 

Nope

We tried. We really tried. But the number went up. From 12.1 last week to 16.5 this week. It means there is still cancer. It's not growing out of control because the number isn't jumping in the thousands. But something is still there.

Dr. Evans says I have two choices: 1) A re-resection with the doctors in Boston or 2) A hysterectomy. There are pros and cons to each. Chris and I are going to talk about it tonight and make a decision by Friday.

I was hoping to go back to work on October 15th, but again, the plan has changed. I'm like the employee who cried wolf. I'm so desperate for this to be over. I want my old life back. Marcia was with me this morning. She says it will all work out. I believe her, I just wanted it to "all work out" sooner rather than later. I guess I still haven't learned the lesson of patience.

Thank you, thank you, thank you to everyone who said a prayer, sent a good thought or wished us well. I'm a little sad today, but I would be a total mess without you.

A PJ Parade

Alright, so I'm in a little funk right now, but it's not all drama and tears. Actually, thanks to so many kind, generous and loving family members and friends - it's been sunshine and happiness. I have three fabulous bouquets of flowers - just the brightest and most uplifting arrangements you've ever seen. And the post-surgery Get Well cards are rivaling anything I've received so far.

How about this one from my friend Kerri:

Possible Lies About Your Surgery Scar:
1) Escaped from Alcatraz
2) Jumped the fountain at the Bellagio
3) Saved your neighbor from a burglar
4) Slept wrong
5) Defeated Chuck Norris

Inside: Scratch #4. That's lame.

Hysterical. Any time I'm smiling this week, it means I'm not crying. So smile it is.

It's easier to smile when you're dressed well too. Since my belly is not quite back to normal, I've enjoyed taking to the PJ's for most of the day. Mommy told a lot of people not to send flowers to the hotel because we wouldn't be there for that long. Still I received great flowers in Boston,

but she suggestion, as an alternative, was pajamas. What a great idea!! When was the last time you overhauled your PJ collection? My nighttime clothing consists of oversized t-shirts and athletic shorts. Any time you get a free t-shirt and it's 37 sized too big, what's the first thing you think of?? I'll wear it to bed.

Well baggy t-shirts no more!! I have received quite an array of sleepwear. How about these??

Blue, white and yellow ... covered in daisies!! So so so soft! Marcia bought me these for my rest and recovery. She's so generous and such a good shopper. Really, how could you be sad in these pj's??

Then I rocked these ... the official Post-Surgery Muumuu!

C'mon!! I know my vagina is broken ... and I know you're not supposed to have sex for several weeks post-surgery ... but if you were my husband, wouldn't you just want to jump my bones in a get-up like that?!?!

Gotta look on the bright side. Even if I lose my figure, there were still be sleepwear that fits!

Boston, We Have A Problem

My husband is in his 40's. We've been dealing with cancer for 4 years. He said to me when we were in Boston, "I'll be so glad when you have this surgery and it's all over. I've been fighting this cancer with you for a 10th of my life. I can't wait until we are done." It's honest sentences like that that break your heart.

We're not done. The results were not good. Yes, the surgeons successfully removed the cancerous tumor. Yes, my uterus is still intact. Yes, I did not die during surgery. All good things. But the margins weren't clear.

A month ago that sentence would have had no meaning to me. "The margins are not clear." Now, it means everything. The overriding goal of uterine surgery was to remove a cancerous tumor and have clear margins. That means, you take out the bad stuff and a little bit of good stuff on all sides, so you know you've plucked all the cancer. A clear margin means there are no cancer cells left behind. We left cancer cells behind.

The pathology report showed the margins weren't clear. Dr. Goldstein had cancelled his office hours to be in the OR while Dr. Garguilo did the surgery. We essentially traveled hundreds of miles and had two geniuses collaborating on how much uterine wall to take and how much to leave. And yet, we didn't do it good enough.

In addition to the bad pathology report, the Beta hCG corroborated our worst fears. The number went up. Two days before the surgery, the hCG was 7.1. Ten days later, more than a week after removing the tumor we believed caused the cancer, the hCG rose again, registering a 12.1. It's not going well.

I feel dead inside. I'm so sad. I'm so frustrated. I'm so afraid. I'm going numb. While I'm smiling on the outside, I'm not well on the inside. But before I take to my inner wrist with a paring knife, we'll wait. Wait until Wednesday when I get my blood drawn again. If it goes down, I will rejoice. Even for a slight drop. That will show progress in the right direction. If it goes up, we have some difficult choices to make.

I feel like I've been at this precipice before. I get all worked up and then it all works out. But it doesn't change the absolute anxiety I feel right now. It doesn't stop the racing thoughts, no matter how hard I try. Maybe Chris and I weren't meant to be parents. Maybe I was never meant to be pregnant and experience the joy of having your baby kick inside your belly. Maybe harvesting eggs and making embryos in a test tube and putting them in someone else's uterus is just not going to work for us. Maybe the cancer isn't in my uterus at all and it's moved somewhere else. Maybe we won't find it in time  ...   Or maybe it will all work out.

I went to church this morning and prayed so hard that it will all just somehow work out. Chris came to church with me. You know we're in bad straights if Chris came to church. We're very cuddly and lovey with each other. We're trying our best to comfort each other. I just keep telling him I love him. He tells me he loves me. Really what we're saying is, "I'm afraid. Who knows what will happen? But no matter what happens, I love you." I think for us, 'I love you' has also turned into 'Thank you.' We're saying "I love you" a lot.

I'm so tired. Physically. Mentally. Spiritually. Emotionally. But still, I know it could be worse. I'm blessed to be alive. I could be dead. Other cancer patients are dead. It doesn't change how I feel though. I'm so tired and I'm so scared.

We'll just wait ....

Fat Lips and Steri Strips

There's nothing like laying around and doing nothing. Most people would think that was fun. The Type-A personalities of Mer and Chris stare at each other and say, "We could be getting so much accomplished right now." Instead, we are holed up in the shittiest Marriott I've ever been to.

We're staying in a beautiful section of Boston called Brookline. Fun stores, lots of cute restaurants, all easy to walk to. Not that I'm doing much walking but at least Mommy and Chris can get out for a little while.

I love pain pills. They gave me a whole slew of Oxycodon. All I keep thinking is, the fewer of these I take right now, the more I have to sell on the black market later. I wonder what the going rate for Oxy is on the street right now?? Could buy me another pair of Loubies!! It turns out though, that I stopped taking the pain medicine after the second day. First, it doesn't really hurt. I'm more uncomfortable. Moving my midsection feels awkward. And second, the pain pills are not as much fun as I expected. I was thinking I would be out like a light, but it turns out I was about 75% asleep and could still sort of tell what was going on. Either I could perceived parts of the conversations my mom and husband were having, or I was still a little keyed into the show Chris was watching on TV. I would wake up after two hours of "sleep" and know what I missed in that time. That's not really sleeping.

The other problem is, while I was "pretend sleeping" I was having these crazy dreams. There was a black tie gala in the basement of Central Market in Lancaster with the Kirk Family doing Cirque De Soleil type entertainment.
The next night I dreamt I was breast feeding a tiny newborn boy who I think belonged to me, then took him for a walk around the neighborhood with Beth and Rebecca and it started raining. All I kept thinking was, it's probably too cool out here for this baby. I should go inside and put more clothes on him.

The last one I remember included a road race through Lancaster that required each person run with a dog and a color coded t-shirt. My shirt was green but I didn't have either of my dogs and I was walking around looking for strays to run with.

Like I said - weird.

So, I'm sleeping a bit, reading a bit, watching some TV and waiting to heal. The only outward signs that I've had surgery are my fat lip and the steri strips on my belly. The fat lip is from the asshole anesthesia resident who put me to sleep. First, it took him 3 sticks to get my IV started. My nurse mother hit the ceiling when she noticed he had to try AGAIN! And then when the dipshit put the tube in my mouth it must have leaned on my lip and caused a big fat lip that is still numb. When I woke up, I had very little abdominal pain but could tell that my lip was fat. I said to my mom, "Is my lip fat?" but it sounded more like "is my wip fad?" because it was in fact too puffy for me to form those words correctly. (Envision me trying to speak normally but having trouble because my bottom lip is jutting out about an inch and a half. It wasn't pretty.)

The steri strips are keeping my little holes shut. No need for stitches apparently. My little (or deep) belly button has a some dried blood in it, but not too bad. My gut is not going to look good in a bikini, but let's be honest - it hasn't looked good in a bikini since 2004. When that metabolism slows down in your mid-20's, it really slows down. It will be a Victoria's Secret Miracle Bathing Suit for me! Thank goodness they make those, because I need a miracle. But before I cover the Budda Belly for the last time, here's a semi-gross look at what I'm sporting now.

At least it's not a topless picture, like Kate Middleton's! (The poor princess ... and what small, perky boobies she has!)

Popped My Cherry

Medical technology is so interesting. This robot was really amazing and because it's all computerized, they can measure down to the millimeter. This was always an advantage for my case because we needed to get all of the cancer out, but not take too much uterus. I still need something to carry the kids around in.

They used an experimental dye. I never want to be a lab rat for doctors who are trying out new stuff, but in this case it seemed to work out pretty well. The dye follows blood vessels. The uterus is full of blood vessels. We were betting that the tumor would NOT be. Therefore, with the dye, it would be easier to tell what parts were healthy uterus and which parts were nasty tumor.

It turns out the tumor didn't light up. It was a cherry sized tumor that they scooped right out. I think there are a lot of things that are probably "cherry" sized, but I thought it was hysterical that the doctors would chose a cherry as a comparison for a uterus surgery.

The doctors also cut that fucker open when they got it to the lab. It turns out it had three foci - like three different hotspots still alive inside it. Plenty of nasty cancer cells that could have started up again at any time. It's just more proof that they cherry needed to be popped.

I have five little holes on my belly including my belly button. Dr. Gargiulo was so excited when he first saw my belly button, saying it was nice and deep. He said it would be perfect for a robot arm. I had never been so proud of my belly button before! We'll keep everything wrapped up for a couple of days. But let's be honest, when this shit is over ... I better start doing some sit-ups!