Tag Archives: PET Scan

This One’s a Fighter

I’m working with arguably the best gyn/onc surgeon in the country at one of the best medical facilities in the world.  Two days ago, this doctor looked me in the eye and said, “Well, do you have it in you to fight just one more time?” About a thousand thoughts and emotions raced through and then drained from me.  I felt empty.  My entire world swirled around me and left me sitting there… flat.

The short answer was, yes, I had it in me to fight one more time. And that’s what I said to her. She explained that the cancer is in one lymph node in my pelvic region. This, of course, is where she removed a chain of lymph nodes and radiated four months ago.  This, of course, is the site where the cancer was not supposed to be growing anymore.  And suddenly, there it was.

The rest of the answer was that I was scared. Do I bother looking for a job for next school year? While I’m fairly certain that I will live to see 33, will I live to see 34? I haven’t had kids yet. I don’t like my car. Is it fair to want to move out of my dad’s house? Does it really matter if I do or don’t eat dairy products at this point? I just had 4 surgeons completely mutilate my body, and for what?

The good news in all of this is two-fold.  Number 1: The cancer is still in my pelvis and has not spread.  And number 2 (this part is amazing to me): A few weeks ago I was scheduled to get a CT scan. I had a seemingly irrational outburst days before I was supposed to have it done and decided that I MUST have a PET scan. I would not have a CT. The aforementioned world renowned surgeon recommended a CT, and I challenged her. Not in an aggressive way. Just in a “I’m sure that I will be having a PET scan” way. After some research, I found that a CT only shows masses (not specifically cancer like a PET will), and a PET will detect cancer that is much smaller than a CT can show. I knew that the cancer that had been in my body was aggressive, and I simply wasn’t willing to take the chance that a CT would miss something if it was there.  So I had the PET. When the doctor told me the results, she said that the lymph node would not have shown up as abnormal on a CT scan. It would have grown aggressively for the next three months when my next routinely scheduled PET would have shown it. And god knows how wildly it would have progressed by then.  I trusted my gut and took charge of my own healthcare.  This is my life, and while I have a wonderful team of specialists (all with resumes that go on for miles), not a single one of them lives inside this body and hears the messages I hear.

Tagged , , , ,

Radiation Prep

Radiation is coming up, and there’s a lot of prep work.  On December 30, 2011, I went in to have more scans done and have my gold seeds placed.

Suddenly I’m Worth More

“Gold seeds” are used so that the doctors can easily see the cervix (in my case) on scans. They are actually gold, but look more like tiny coils than seeds.  I have three of them, and I get to keep them forever.  I have been permanently vajazzled. My cervix has a grill.

I got another catheter that stayed in the whole time I was at the hospital (about 5 hours). The nurse then  gave me some drug before the procedure that made me very loopy very quickly.  He proceeded to tell me some information that seemed important.  I looked at him, giggled and said, “You should have told me that before you gave me that drug! I have no idea what you just said!” What I remember about the procedure is that there were a lot of people in the room… probably 5 or 6.  The girl holding my hand was young, and I thought I was going to crush her.  My feet were in stirrups, but not the fluff covered ones of a standard exam room.  These looked more like the walking boots you might get after a broken leg, except that they were blue, not black.  I loved those moon boot stirrups.  They allowed me to flex my feet anxiously and push against them. The rest of the procedure is kind of a blur. My radiation oncologist put in the seeds and took two biopsies. I remember that whatever he did last, hurt. But then it was over, and I was in a wheel chair being whisked off to get my scans.

This Stuff Doesn’t Happen Every Day

I had already had a PET-CT and an MRI, but to prepare for radiation, the radiation oncologist needs to do another PET-CT closer to the time of treatment.  He also asked if I would be interested in participating in a study using a brand new technology- a PET-MRI. This is where they do a PET and an MRI simultaneously and then lay the images on top of each other.  I would be the 31st person to use this particular machine.  He asked if I was even a little bit claustrophobic, and upon hearing that I was not, determined that I would be the perfect candidate for the study.  I’d laid in these types of machines before, and they’re not super roomy, but they’re open at the ends and that makes the experience less terrifying. I thought surely this new machine would be similar in structure to the other machines… and it was.

I laid on the table that would later go into the scanner. Normal. Instead of a pillow there was a plastic form for my head. Not normal, but ok. They put the wedge under my knees so my torso would be flat. Normal. A plastic grid was placed over my pelvis (this allows them to “zoom in”) and strapped down. Normal. A second grid was placed on my chest and strapped down, completely locking down my arms. Not normal. A rubber bulb was placed in my right hand for me to squeeze should I need the scan to stop for some reason. Normal. They put headphones on my head to help block out noise and to allow them to communicate with me, which is normal except that the plastic form was a just the tiniest bit too small for my head and the headphones, so my head got a 45 minute hug from those headphones. Not normal. Ok, not too bad so far. The being completely strapped to the table thing and the squeezed head thing were a bit uncomfortable, but overall not too bad. The doctors and nurses continued to ask about my claustrophobia through the entire process, and I still wasn’t sure what the big deal was.  THEN they put the grate over my face. NOT NORMAL. Oh yes. It was like a hockey goalie’s mask locked over my face. I suddenly felt a kinship with Hannibal Lector.

I kept my eyes closed until the scan was over.

Tattoo You

On January 4, 2012, I went in to the radiation lab to have my mold made. The mold will be used during external radiation to ensure that my body is laying in the exact same position every time.  I stripped down to the buff, and then put on a gown and laid down on a table. Underneath me was a trash bag. No joke. In the trash bag was some sort of chemical solution that the radiation therapist likened to foam insulation… the stuff that is liquid and then expands to fill a space.  As I laid there, the solution began to expand and the therapists pushed it against my body. I had to lay very still for a few minutes so the stuff could harden, and then we were done.

For perspective, imagine I am laying on the mold with my head on the white block at the left edge of the picture, the curve of my lower back is where the wrinkle is in the center of the trash bag, my butt is just below that and then you can see where both of my legs would lay toward the right side of the picture. The mold stops mid thigh. That’s it. That’s the finished product. My name is on it, and this mold gets placed in a storage unit with all the other patients’ molds. It all seems so high tech.

After this procedure, the therapists informed me that they would be giving me 4 tiny tattoos so that the lasers would always be in the correct place on my body. I said, “Tattoo, as in forever?” They said, “Yes.”  I said, “No.” They tried to tell me that the tattoos would be small, like freckles, and I wouldn’t even notice them after a while. I informed them that I am 31 years old and pride myself on not having any tattoos. And the first four tattoos I get are most certainly not going to be in the radiation lab. What are my other options? They said about 25% of patients opt out of the tattoos, which is an alarmingly low number to me. As if I need my little black badges of courage on my body forever reminding me of that time I had cancer. The therapists did what they would have done over my freckle tattoos and said that if the tape starts to come off, I need to come back to the lab immediately to have it replaced. I live about 20 minutes from the hospital, and I’m there a lot, I’ll take my chances with inconvenience over a permanent reminder any day. Here’s what they did…

They lined me up perfectly on the table and traced the laser that was shooting at my body. This is exactly where the laser will hit me every time. The clear tape you can see in several places is just to help keep the paint pen from washing off. This is the whole line.

I have one of these on each hip. It’s like a sight from Deer Hunter. There is also clear tape on these.

What’s Next

I’m doing fertility stuff right now and radiation will follow the egg harvest. I’m on the radiation schedule for January 16, and treatment will last for 6 weeks. That may not end up being the exact start date. It all depends on what my endocrinologist says.

Tagged , , , , ,

The PET Scan Experience

I got my PET scan done on Tuesday.

My First Catheter

I was so nervous about getting a catheter.  Everyone I’d spoken to about it said it hurt like a beast. In fact, a friend’s husband (who is an EMT) was all jokes and lighthearted about the cancer.  However, his tone dropped several levels into the pits of seriousness when I mentioned that I had to have a catheter for one of my tests.  Thanks for your concern, Brandon.  The catheter turned out to be no big deal. It didn’t hurt at all going in or coming out. But the entire time it was in, it felt like I had to pee.  Imagine you’re out somewhere, and you think I think I have to pee… but I’m pretty sure I can wait until I get home.  And then you get stopped at EVERY light on the way home, a bag gets stuck in the trunk as you’re unloading them, the neighbor wants to chat… all the while the urge to pee is just getting worse and worse.  You get to your porch, but then you can’t find your keys. By this time your bladder is screaming at you as you revert to your 5 year old self doing one serious pee-pee dance before you finally make it into your house and sprint for the bathroom.  It was like that… for over an hour.  After the scan, when the nurse took the catheter out, I’d like to save face here and tell all of you I kept everything drip dry, but I’d be lying.  I believe my exact words were, “I think I’m peeing, and I don’t think I can control it! Hahaha!” The nurses giggled and acted like it was the most normal thing in the world.

Scott, The Amazing Tech

When the nurses first wheeled me into the scan room, a man walked in… this was our dialogue:

“I’m Scott.  I’m the guy who takes the pictures.”

“I’m Kelly, and I’m glad you’re here. I’m very photogenic.”

“Well, I’ll be taking pictures of your insides.”

“Oh, my insides are photogenic too!”

“Just make sure they’re smiling.”

“They better be smiling!”

He laughed, explained the process (that would only take about 13 minutes and involved me laying very still and holding my breath when he said so) and went into the booth. From there, he moved the exam table automatically inside the machine.  About 15 seconds later, he moved the table back out.  I sat up and looked at him quizzically. Grinning, he said, “You weren’t smiling!” I laughed. “There you go, now we can start.” And back into the machine I went. I liked Scott.  He gets a gold star for patient care.

The Results

A random doctor met with me after the scan to inform me that my results would be available the following day if I wanted to call and get them.  I very assertively informed her that I would be doing no such thing.  I would just wait until my consultation with my oncologist on Friday.  I said that I wanted to enjoy the next couple of days and not feel plagued by cancer.  She looked at me like I was a nut, but signed my chart and sent me on my way.

I drove to Chicago that night. Wednesday morning was spent hanging out in Lakeview with Shannon. At 3pm, I got on a train to meet with Jonny Imerman (www.imermanangels.org) at a Starbucks in the west loop.  About 3 stops from my stop, Dr. Mutch called.  He said that he had the results of my scans. I cut him off mid-sentence practically yelling “NO NO NO! Don’t tell me! I don’t want to know yet!” He was thoroughly perplexed so I explained my reasoning. He said, “Oh, no. The results are really good!” Bashfully, (I just yelled at my oncologist like I was his teenage daughter) I let him speak. He explained that my lymph nodes were clear- the cancer had not spread. As this information slowly sunk in, I thanked him and said I’d see him on Friday. Just as the train pulled in to my stop, the tears began to uncontrollably stream down my face.  I was laughing and crying as I walked down the crowded platform and then out into the streets of downtown Chicago.  I was mildly aware that people were staring at me, but I didn’t care. I’d just found out that my lymph nodes were clear!!!

Jonny was amazing, and that’s a story for another time.

When I left Jonny, I headed to Union Station where I was to board a commuter rail to LaGrange, where Chris was going to pick me up.  It began to rain, and it was rush hour (which in downtown Chicago applies to foot traffic as well as to cars and public transportation). My umbrella had decided to conk out earlier in the day, so it was just me against the elements.  I was in the middle of a herd of black trench coat business types, some with umbrellas and some not. Another herd was perpetually coming at us.  I was still elated from the news of my beautiful lymph nodes and even higher after my conversation with Jonny, but all around me, people were swearing and fumbling angrily with their umbrellas, scoffing as they were jostled by the crowd.  As I played witness to all of this, I couldn’t help but laugh. I was shielding my eyes from umbrella points and trying to stay as small as possible just like they were, but I was loving every second of it. It was one of those rare moments in life where I felt truly alive. Shuffling down the rainy streets of downtown Chicago, surrounded by tired and cranky professionals, I smiled and felt more alive than I had in a long time.

I Have Cancer

Chris and I met up with Brian for dinner and then headed to EGGS, a gymnastics facility that also has equipment for circus arts (Chris is presently employed performing with Circus Vargas out in California, and Brian just got back from a circus showcase in Florida… these guys are legit).  I tumbled and flipped and played on the trampoline and balance beams for the better part of 4 hours. I tried the teeter board for the first time. It’s awesome! The video is very blurry, but you can watch it here:

<object width=”176″ height=”144″ ><param name=”allowfullscreen” value=”true” /><param name=”movie” value=”http://www.facebook.com/v/10150440869523710&#8243; />http://www.facebook.com/v/10150440869523710</object>

Or go straight to my facebook page and check it out.

My point is that I feel amazing. I have cancer, but I’m still living my life.  I’m alive, and I plan to take full advantage of that.

 

Tagged , , , , , ,