Boston Meets Italy

There's nothing like flying to Boston and back in 24 hours. But in great Cooke fashion, Chris and I managed to cram a lot into one day. We wanted to get our money's worth after shelling out $700 in airfare for the day.

The most important part: the appointment. There's always a funny story when Chris and I travel. We arrive at Brigham and Women's Hospital but can't located Dr. Antonio Gargiulo's office. We head to the Help Desk where a wacko was happy to help. She had hair out to here (imagine how big I'm making my hands), a frizzy mess with eyeglasses tangled up in there. She's wearing a long skirt and a big nose. She's sounds like she's from Long Island, if you know what I mean. When we ask where Dr. Garguilo's office is she looks right at Chris and says, "Oh! Don't be jealous, but he's a real looka' - All the women love him. They say he's so handsome."

Chris just smiles and blinks at the lady. Great, thanks, what do you want me to do with that information, really just tell us what fucking floor he's on. Filling the silence, she follow up, "You'll wanna head to the third floor [flauw] and turn right." And so it begins.

Once we finally get to the office my stomach starts up in knots. I ask the secretary where the bathroom is and I camp out there for like 15 minutes. It wasn't pretty, but I just get so nervous. This is Big Girl shit and sometimes I can't handle it. Eventually we see Dr. Gargiulo and I immediately felt more calm. I think I like to be around smart people. Once he started talking I could tell we were in good hands. I feel as though things can not go totally awry if you have intelligent people making good, clear decisions.

He starts talking ... Yes, he can do the surgery. He's done hundreds of uterine resections. Yes, the left fallopian tube has to come out. But, yes, you will still be able to conceive. No, you don't have to stay in the hospital overnight, but it is a 2 to 4 week recovery. He did a wonderful job of "selling himself." We were really there to pick him more than he was there to pick us. I don't know that women are great at this, men seems to excel at it more: bragging without making it seems like bragging. He clearly and calmly stated he's the leader in this type of surgery, he's the Director of Robotic Surgery at the Harvard Medial Center, he's never a problem where he had to abandon using the robot halfway through and do an open surgery requiring a big cut. And he's never lost a uterus - meaning he's never had to do a hysterectomy because something went wrong. I was sold. Plus, he said this all in an Italian accent - because he's Italian, like from Italy Italian, not like the Rannazzisi family Italian. I've always liked pasta and pizza, but I've even more Pro-Italy now.

(Note: the man is fine looking, but the lady gushing at the Help Desk was unnecessary in my opinion. Let's put it this way; I wouldn't go out of my way to come up with a fake story and a fake interview just to check him out. I may or may not have done that to a certain bone doctor once, but that can't be verified.)



(Note also: No one can say his name. It's Gargiulo. Like Nicole Gargiulo that went to Smithtown High School. Say Gar-JEW-lo. If you grew up in Lancaster you can pronounce Stoltzfus with no problem, but Gargiulo seems to turn into Gar-GHOUL-ee-o around here. Not a lot of Italians running around with the Amish.)

We needed a day or two just to roll everything around in our brains. In great Chris fashion, we are taking our time, weighing all the options and not rushing into a decision Philly guy vs. Boston guy.

In the meantime, we had to cram in some history. Boston was, after all, a hot bed of activity during the Revolutionary War. We toured the USS Constitution, AKA Old Ironside. It's a 3-mast war ship built in the late 1700's and she still floats today. It was a great distraction from the heavy stuff of the day and Chris always enjoys learning something new.

 

On top of a history lesson, we had an amazing meal at a fun French Restaurant right along Commonwealth Ave, Deuxave. (Another tough pronunciation. They say Dew-AHV. I say DUX-eh-vee) Tomato, tomato, either way, it was delicious. Katie was in Providence, Rhode Island and came to Boston to meet us. Fun to laugh and talk, more proof there's nothing a bottle of red wine can't fix.

Did Someone Say Cosmo?

It's about that time ... the drinking time. Actually, I've been off the wagon for about a month now. It's easier to count the sober days than the drunk ones. (Just kidding, Mom. Don't flip out.) After months of not drinking, I'm now able to imbibe again. We thought it was worth some documention:

 

I don't know why this picture is so yellow, but that's the moment of my first drink (or two) in more than 6 months. Perhaps Miller Light was not the best choice, but you go with what you know. Chris refers to this as "M. Minus" - similar to when people call Lutherans "Catholic Light."

 

So the verdict?? Dee-lish-ous!! "So good when it touches the lips!" (Name that movie?) Despite being an alcohol-light-weight at this point, I did not get a buzz from two beers. Instead, I had a small headache the next morning. This is the difference between being 22 and 32. The chemo couldn't have anything to do with it.

But that's just a BEER...

 

So Joe Mitton shared my first COSMO with me at dinner at Macaroni Grill. He - typically an ice tea drinker - even upgraded to a Gin and Tonic just to celebrate with me. Bring on the booze, baby! I'm back!

Remember When I Got to Zero? I'm Not There Anymore

I feel like I've led two lives this week. The beginning of the week felt like "hurry up and wait." I've been so anxious to go to Boston. So anxious to hear what the specialist there has to say. So worried about chosing between the two and so impatient wanting to simply pick one and get this over with.

Now, at the end of the week, it's all moving so quickly. In the last two hours, I've received my lab results, got a phone call from Kristin at the cancer office, an e-mail from Dr. Goldstein - the original doctor in Boston, then just got off the phone with Dr. Evans urging me to get the tumor taken out sooner rather than later. The bloodwork was bad.

Three weeks ago, my beta hCG registered a 0.07 - damn close to 0.00. I didn't have my blood draw the week of our anniversary, but went back to the lab last week. It had gone up to a 2.2. Kristin tried to keep me from flipping the F out by saying 2 is still considered "normal." Well there's nothing normal about the shit living rent free in my uterus!

Today's level: 5.3!! Are you kidding me? Are you kidding me? If this continues, at some point I'm going to need chemo again. Really this just confirms the fact that the tumor is still active. Even after repeated courses of 5-drug chemotherapy that tumor has the audacity to be spreading cancer again. How rude.

So it is with great speed that I hope we get to Boston, get a second opinion, get on a surgeon's schedule and get that little fucker cut out. While I'm so desperate to have a baby in my uterus, right now I just wish my uterus was empty. Hopefully a good doctor with great hands can get us there.

Philly: The City of "Doctor-ly" Love

Each year, Lancaster Magazine asks people of the county what they love and hate the most about Lancaster. Last year, readers said they loved me as the Lancaster County Reporter - a huge honor. (When I got to the checkout line at Giant Supermarket and purchased 37 copies of the magazine that listed me as #1, the woman said to me, "You must be in this magazine, huh? Lancaster Magazine isn't interesting enough to buy this many copies.") Each year they also list what people hate the most about Lancaster. Nearly every year "Traffic" tops the list.

These people have never been on the Schuylkill Expressway or anywhere on Long Island. Let me tell you about traffic. Chris and I had a 3pm appointment with a specialist in Philadelphia. We left 2 1/2 hours for a ride that should take 1 1/2 hours. Thanks to bumper to bumper traffic we were 30 minutes late. Ask a doctor how he feels when you beg for an appointment and then show up 30 minutes late. Chris will tell you ... it's not good.

I called ahead and let the scheduler know we would be late. Despite our tardiness and a nurse telling us they had already "no-showed" us, Dr. Thomas Randall met with Chris and me. First we talked with the resident - an "almost" doctor. I gave her a complete rundown of my health and our situation. If you had recorded it and played it back, it would have sounded like I was an "almost" doctor too. I'm all "the tumor is located between the endometrium and the myometrium" and "a wedge resection under ultrasound guidance done arthroscopicly would probably be optimum." Even I was impressed. But after I spilled my guts to Miss "Almost" Doctor, we had to do it again to "The Real Doctor."

Here's how God works in strange ways: because we were so late to the appointment we were now the last appointment of the day. During our in depth discussion about what we should do with the little fucker of a tumor, Dr. Randall remarked, "I'm glad you're the last patient so we have plenty of time to talk about this and mull over the options." I felt encouraged when he also said, "This is a very rare case. It's keeping the day interesting all the way until the end." He seems genuinely interested in my case and taking good care of us.

Bottom line: he says he can do the surgery. I asked if his wife had this and he had to do the surgery on her, how confident did he feel? He said totally confident. That's pretty good if you ask me. Now, of course there are risks in cutting out just a part of the uterus. We went over those and I quietly freak out on the inside. He also mentioned I would lose the fallopian tube on the left side, making that ovary useless. This disappointed me because I was hoping I could keep all the "inner workings." But I guess that's why God gives you two - you only need one. Lots of questions to answer there, but hopefully those will get answered in the next few days.

We told Dr. Randall were heading to Boston for another opinion. He wished us well and told us to be in touch. Chris and I thanked him and got into the elevator. As soon as the silver doors closed, I started bawling.  Poor Chris looked at me with sadness in his eyes. He could tell I was sad and nervous and overwhelmed. He hugged me until we hit the ground floor. I'm all good when I'm talking a mile a minute or focusing on "left, right, left, right," but in that moment it all hit me like a ton of bricks.

We were home in Lancaster just a few hours later and Chris held me tight when we went to sleep that night. It will all be okay, he says.

Now we just wait to fly to Boston Friday to do it all over again.

Mom Sent the Finish Line to Me

Well I know my mom is reading the blog! I have no idea if this silly, little website is helpful to anyone but her and Grandma. Or if it's really just therapeutic for me. But I'm enjoying it none the less. Brian Roche says his family members are a bunch of blog readers ... so it's nice to know you're loved.

 

I know Mom loves me because she sent me a silver hug in the mail. Remember when I wrote about the finish line and being wrapped in a foil blanket like at a marathon. Well, she sent me one. I started crying as soon as I opened it up.

 

 Mommy was there in 2004 when I ran my one (and only) marathon in Harrisburg. I don't think she thought it was such a big deal until she got there that day. It took me just shy of five hours to run that beast. I don't think she thought it was going to be that long. She made good use of the time though, going to Mass for an hour at the Cathedral in Harrisburg, while I continued to run. 

 

My college girlfriend, Lisa Melillo (now Harris), ran the race with me. And by "with me" I mean ahead of me - waaaayyy ahead of me. She finished in 3 hours and something. I think she already stretched and did her cool down by the time I got to the finish line. So when I finally crossed and they wrapped me in the foil blanket, I called it quits. No stretching, no cool down for me - just sat wrapped in the foil blanket for a long long time.  

I've been doing a lot of just sitting lately too. But at least now I can do it in a foil blanket. Mom's friend from work is a runner and gave her this to send to me. I love it. So simple but so meaningful. We're getting closer and closer to the finish line. Thanks, Mommy.

 

 

The best part?!?! It was a DRINKING MARATHON!! A Yuengling Lager marathon, no less! Woo Hoo!

The Results Are In ... Here's the Plan

You know me, I like to be loud and boisterous and jump up and down a bit. That's what I planned to do when I got the results of the CAT Scan and MRI. I'd say it ended up with a mild Woo Hoo. Here's what we know.

CAT Scan was great. It focused on my lungs where the cancer had spread to. Now, my lungs are clear and cancer free! Thank goodness. They can amputate/remove some parts of your body that have cancer. All of both lungs is not one of those options. So the chemo did what it was supposed to do and killed all the small nodules of cancer in my lungs. Homerun!

The MRI ... now that's where it gets a little sticky. We always knew the tumor was still going to be there. (When I refer to "we" now, I'm speaking of Chris and I. However, I didn't know most of this, I just go along with what he says.) So "we" expected to see a mass, "we" also hoped it would be dead. The problem is we're just not sure. So that means surgery.

I swear this pregnancy gone-awry must have been Satan's Spawn or something because this is a persistent little fucker. Two rounds of chemo and the radiologist says it could still be residual cancer. So, so annoying.

Good news, the tumor is half the size it was in 2008. It's likely all scarred over. But that's part of the problem. It likely scarred itself over last time, there were cancer cells still alive in the middle, it laid dormant for 2 1/2 years and then popped up again. The goal is to never have this tumor pop up again. So we're taking it out.

We (now referring to Chris and my doctors) have always talked about a possible resection of this problematic part of my uterus. But they kept saying don't put the cart before the horse. We might not need to do surgery. The chemo should take care of it. Well now we are at the other end, post chemo, horse in front of cart (Amish Buggy in my case) and we DO have to cut. The question now is who will do that, who knows how to do that?

Have an appointment with another Gynecological Oncologist at the University of Pennsylvania in a week and a half. But Dr. Evans has warned me that Gyn/Onc's are typically trained to take the uterus out, not to save it. So I don't know if he's gonna be my guy.

Dr. Goldstein, in Boston, says he knows a Reproductive Endocrinologist who might be able to help. As they explained it to me, a doctor of this specialty aims to get your pregnant and deals with fertility issues. So he might be able to cut just the tumor out of the uterus and leave the rest of it in there.

Some assurances: Dr. Goldstein feels confident we can still conceive. That's a plus. He says because of a uterine surgery I would not be able to have a regular delivery. I would require a C-section so I don't rupture my uterus while I'm pushing. As Marcia always says, none of her grandchildren were born naturally - all C-Sections. I told her I wasn't into that and hoped to skip surgery and push myself. But it seems that's out. No problem. If I actually get to carry my own kid in my own belly and he or she has 10 fingers and 10 toes, I don't care how the baby comes out.

We're not rushing to adoption, IVF or a surrogate yet. We can't harvest any eggs yet either, because I was just on chemo. I go from zero to 60 in like 3.2 seconds. But it's still one step at a time. Today's step: find a doctor with great hands who can cut out a tumor and nothing more. If you know someone, call me.

Left foot, right foot. Left foot, right foot. I didn't jump up and down at the MRI report, but I will jump up and down if Chris and I ever get pregnant!

What Station Would You Pick?

Alright, this was a big week. Monday was body scan time. I wish it was the slightly creepy body scan they do at the airport when you are about to go on an amazing trip to like Fiji. Instead, my scans were feline in nature, plus 2 MRI's for good measure.
The CAT scan (or CT - no idea what the difference is. It might be like Pointsetta. People always said the name of the damn red Christmas flower like that: point-set-uh. Then, suddenly, someone decided we had all been missing a syllable for decades and now the same fricken plan goes by: point-set-ee-uh. Retarded. So CAT, CT, tomato, tomato.) Anyway, the CAT scan was a piece of cake. Like 10 minutes total.

Have you had a CAT scan recently? Did you need "contrast" - the IV fluid that makes it easier to read? Well each of my CAT scans has included this bonus feature and it's unsettling side effect ... you feel like your peeing yourself when you're on the table! For real - like there is a drug that makes that happen! Thank God the tech warns you before because it's weird to say the least. She said, "Remember, this contrast will make you feel warm all over and make you feel like you're losing bladder control." The first time I thought, wow, this I have to try. Now that this is like my 87th CAT scan, I'm confident I haven't wet the sheets even though it feels like it.

Next up was the MRI. I was almost looking forward to this test because this will really show how well we've done. I maintain that an MRI image is all shades of gray (50 Shades, maybe ;-) But somehow, someone can tell a lot from pictures. And I had a lot of pictures to look at ... 2 hours worth.

I'm not claustrophobic and by this point, I don't get overly worked up about most medical tests. Yet when the tech said I would be in the tube for two hours I couldn't believe it. It was two tests; abdomen and pelvis. But a girl is gonna get bored stuck in a tube with loud banging sounds for two hours. Instead of enjoying a full-length feature film, I was surrounded by a magnet making such a racket it sounded like a toddler got into the pots and pans drawer and was having a ball on the kitchen floor.

My first thought was to try to sleep the whole time. Impossible with all the noise, so I considered a drug induced snooze instead. That doesn't work either though because the second half of the test requires your participation. "Take in a breath. Hold it ..... (5 seconds pass) ..... (15 seconds gone) ..... (28 seconds) .... Okay, breathe." If she didn't say breathe, I would have passed out. I'm not an Olympic swimmer for God's sake. She was kind though and said she would give me a chance to catch my breath before the next test. Thanks a lot lady. If I wasn't strapped down, I'd climb out of this tube of torture and smack you. Take in a breath?!?! You take in a goddamn breath, bitch! (Really though the lady was very kind, I just get cranky)

The only thing to do was listen to the music. Oh, I didn't mention there was music? Don't get ahead of yourself - this isn't a i-pod adventure. No one is enjoying a podcast or rocking out to their latest Summer of 2012 playlist. This is satellite radio, but I doubt it's Sirius. There are 40 choices, mostly broken down into decades and genres. Looks like an impressive list to the novice, but I am a body scan veteran.

The first time I played this game, I went simply with station #1 - Top 40 Hits. The woman who checked me in then said it was similar to FM 97 - the terrible, corny yet predictable local radio station. In other words, I should know the songs, they play Call Me Maybe thrice every hour (no joke). That choice was a disaster; both for my ears and my self-esteem. I didn't know a single song, notta one. Plus, it was a lot of techo and rap so I couldn't tell if my headache was from the magnet clanking or the music. And then I wanted to know what was wrong with me that I didn't know a single song in the Top 40. Am I getting too old? Am I losing my mojo? Am I more a Michael Buble than a Top 40 now?

Turns out, it wasn't me. The station sucked. The next scan, I opted for the 80's. Being a (formerly) big haired 80's girl, I thought I would feel right at home here. Verdict: definitely an improvement over my other choice, but I was 2 when some of the songs came out and I was still rocking Sesame Street at that time.

This time, I nailed it. I was sitting pretty (or lying down pretty, I guess) with Station #9 - The 90's. Here's a sample of my 2 hour playlist.

Hootie and Blowfish - Hold My Hand

Backstreet Boys - I Want it That Way

John Mellencamp (pre-Meg Ryan) - Wild Nights

Oasis - Wonderwall

Alanis Morisette - You Oughta Know

Sugar Ray - Every Morning

Counting Crows - Mr. Jones

It doesn't matter how old or young you are ... you are singing some of those songs in your head right now. Two hours in a tube is a long time. But not when you're with good friends like Hootie and Alanis.

We'll see if the results make me as happy as I was when I was done with that test. But seriously, Thank God for modern medicine.