Tag Archives: oncologist

Happy Birthday!

On June 7, 2012, I had my first follow up scans post treatment. Those scans showed that the cancer was back and was growing in three different places in my pelvis. Dr. Mutch, my home oncologist, diligently laid out a plan of action but was very optimistic. On June 13, I visited Dr. Shenk out of Northwestern for a second opinion.  He told me that the cancer was very aggressive and that, without treatment, I would have about 10 months to live… that I would not probably live to see my 33rd birthday.

I did chemo in an effort to control the tumor growth until we figured out another plan. During that time, Dr. Mutch worked with me to set up an appointment for my huge radical surgery with Dr. Gostout at the Mayo Clinic.  On our first consultation (which took place on the phone), Dr. Gostout told me that without the surgery, the disease would kill me… with the surgery, it might not.

I had the surgery in October- the one where I was completely gutted and sewn back together. In January, scans showed the cancer was back. So, in February I had another surgery with more radiation and was declared cancer free once again. In May, a PET scan confirmed that my body was, in fact, cancer free.

All I heard was that I was free.

I would like to point out that my 33rd birthday is in less than a week and that I’m still here.  10 months has come and gone, and I’m still here.

Birthdays have always been important to me, but this one is particularly special. I’ve never been so proud to tell people how old I’m going to be.  I feel like a child… the one who holds up the right amount of fingers, glowing… telling the lady at the bank, her parents’ friends, and anyone else who will listen that I am having a birthday and that it is a wonderful, magical thing.

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It’s Baaaack…

Ugh… Where to begin?

Last Thursday, I got the news from my radiation oncologist that my scans weren’t clear. I spent the rest of that day laying in the grass making phone call after phone call to various people in the network I’d created for myself during the initial run. My first call was to the hubs, and the next call, obviously, was to the guy producing the documentary.  A couple of hours later my parents each got a call… serious priorities.

Long-ish story short, I cancelled all of my weekend plans and headed to Chicago for one last summer weekend of reckless behavior with Emily. I threw on a sassy little green number, and off we went… to Wrigleyville.  For those of you not familiar with Wrigleyville, it’s where all the frat boys and sorostitutes go directly after graduation, people are more ticked off that the cop tasing some drunk guy is blocking the sidewalk than the fact that the cop is tasing some drunk guy, and everyone there, without doubt, is dressed for the club, hanging at a bar that, in other parts of the country, would call for little more than a t-shirt and jeans. Yes, this is where I wanted to go for my night of debauchery. 

And it.was.awesome.

I saw Dr. Mutch the following Tuesday and a new doctor at Northwestern, Dr. Schink, on Wednesday.  Both agreed that the cancer is more aggressive than perhaps they first understood and that I should get in a clinical trial as soon as possible.  I’m getting scans and blood work done next week, and, if all goes as planned, I’ll start the trial the following week. I will lose my hair by the end of July, but I would lose my hair a thousand times if it meant that I’d get to be cancer free.

As you can imagine, it’s been a shit storm of a week.  I’ve been an emotional basket case with intermittent bouts of taking care of business.  I’m doing my best to stay positive, but it’s difficult.  I’ve been touching my hair constantly and looking in the mirror (more than usual) as if doing so will somehow summon a miracle. I am here today, and I’m enjoying every second of it.  Cancer is not going to win this battle. Not if I have any say.

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Week One

This past week was particularly rough for me.  So in an effort to keep you all current without being too lengthy, I’m going to try to keep this post brief but informative.

The Egg Retrieval

Friday, January 13, 2012, was the day my “Maybe Babies” were created.  You can imagine my horror when I realized that my procedure was on Friday the 13th… I had some pretty sweet duds though.

The only instructions I received for the procedure were don’t eat after midnight and smell as neutral as possible, the eggs don’t like scented things. My little “Maybe Babies” are sensitive already.

I also had some awesome company before and after the procedure.

Obviously.

And some awesome photo opps…

My doctor was able to get 21 eggs! That’s phenomenal!!! Normal is 14-16. We froze 7 unfertilized eggs and 10 embryos. I’m more than satisfied with these numbers.

Chemo and Radiation

I have been asked to be part of a documentary about HPV and the cancers it causes.  I am the woman presently going through treatment, everyone else has already been through treatment and has come out one way or another. It’s not exactly the film debut I had always imagined, but I’ll take it!

The director, Frederic, and camera guy, Ken, came over Sunday, January 15, to do interviews with me and my dad.  They were here for the better part of the day with their giant lights set up all over our house.  They came back Monday to ride with me to my first chemo and radiation appointments. Chris went with me.

We were there for almost 6 hours (I got a saline drip for 2 hours, steroids and pain meds after that, chemo for just over an hour, and another 2 hours of saline). The kind of chemotherapy I get is called cisplatin.  It’s light sensitive, so they keep it in a brown bag. The nurse likened the bag to a beer bottle…

To keep ourselves occupied, we brought things to do, but it turned out that we didn’t really have that much time.  The hospital had a speaker come speak to all the women getting chemo (I get my treatments at the center for gyncologic cancers only… turns out it’s the Ritz Carlton of chemo treatment centers). We brought lunch in, did some interviews, my oncologist came down to chat with me (and be interviewed), and we played a few games of UNO- and then it was time to go.  The time flew by.  I forgot to take a picture of one of my favorite parts of the day, but I promise to get one tomorrow at my next treatment.  I have to pee in a “hat”. Stay tuned for more on that…

Radiation

A radiation treatment only takes about 15 minutes.  The mold of my torso I showed you earlier, is already in place on the table under a sheet when I get there.  I lay in it with my head toward the machine and the radiation therapists line me up using the blue lines on my stomach and hips. I’m not exactly sure how the machine works, but the whole thing moves around me and those panels on the side close and open. I don’t feel anything and the only sound is a steady, pulsing hum.

My Week

— Warning! This part talks about poop and diarrhea a lot. You have been warned.—

This week was supposed to be my easiest week as far as how I felt.  Well, long story short… I hadn’t pooped in about a week and my belly was literally distended.  I was so bloated that my belly button, which is usually an in-betweeny (it’s an outty that has been pushed in) was starting to pop out. My whole abdomen from ribs to pubes was rock hard. I took Miralax on Sunday, Monday, and Tuesday to no avail. I wasn’t even farting. And for those of you who know me, I’m not not gassy. This was weird. On Tuesday I took a dose of Milk of Magnesia. Nothing. So on Wednesday, when I couldn’t move because my abdomen hurt so bad, I took another dose.  All of this was per my doctors’ recommendations (I consulted with 2 of them). I waited 7 hours after my last dose of Milk of Magnesia (it’s supposed to work in 1/2 – 6 hours) and then sent my dad to CVS to get a liquid glycerin suppository. It worked.

I had been laying on the floor to do the suppository, and no sooner did I remove it than I was climbing up onto the toilet. Straight diarrhea. Which was great that I was emptying out, but then I started gagging.  I grabbed my puke bucket (which has a permanent place next to the toilet these days).  I had what was essentially water coming out of both ends of my body.  Gross. I yelled for my dad and asked him to call Dr. Mutch, my oncologist.  This kind of water loss is bad for healthy people, but it’s especially bad for chemo patients as the chemo is horrible for the kidneys, and we’re supposed to stay very well hydrated. My poor, tech un-savvy dad was on the other side of the bathroom door and couldn’t figure out how to work my iPhone. It wasn’t so funny then, but now it’s hysterical. I finally got my phone and left a message for the doc.

I got into my bed and felt SO MUCH BETTER and was so thankful the camera crew was gone already.

Later that night, I had another bout of diarrhea. This time when I started puking, I got really dizzy and actually contemplated laying on the floor and letting the fluids drain from my body around me. And then I blacked out momentarily. My dad, who can’t hear me when I’m next to him in the car, must have been tuned into me that night because he came running down the hall to the bathroom.  Without missing a beat, he yelled, “I’m coming in!” as he barreled through the doorway.  You know you’re in an awful state when you’re actively diarrhea-ing, your puke bucket has spilled off your lap and your vomit is all over the floor, your stark white granny panties and giant maxi pad are around your knees, you haven’t trimmed up anything since Christmas, and you’re perfectly happy to have your dad cleaning you up in the family bathroom.  This was my Wednesday.

Thursday, I couldn’t get out of bed. I skipped my radiation appointment and went to the 24/7 center instead.  I was so dehydrated, it took 2 nurses 3 tries to find a vein they could access.  I laid in a bed all day being pumped full of saline.  Turns out a water cup at this distance is just too far away when you’re that dehydrated. I’m not generally so helpless, but I sure did wait for someone to come in the room to get that water for me.

After all the saline, my stomach was distended again, so they sent me to get an x-ray to make sure I didn’t have a blockage of some kind. Nothing. The next day, I saw a radiation oncologist, 2 residents, and a nurse who felt, listened, and brainstormed about what the problem could be. No one had any idea. I felt like I was in the middle of an episode of House. Then I suggested that it may be a reaction to my egg retrieval. They called my endocrinologist and sent me over there for an ultrasound after my radiation treatment. BINGO! I have a mild case of Ovarian Hyperstimulation Syndrome… sigh of relief.  Essentially, the fluid from all my recently vacated follicles is draining into my abdomen and not being absorbed properly. It doesn’t happen to everyone after a retrieval, but it’s not super uncommon.  It will resolve itself. Finally, I had an answer for my pregnant-looking belly.  The constipation was something separate, but at least I had an answer to my biggest concern.

Today I feel almost normal. I’m a little bummed that the week that was supposed to be my easy week was miserable, but I have one week under my belt (yay!), and I can’t imagine the rest of treatment will be terribly worse.

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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.

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Emotional Rollercoaster

Today was, hands down, the worst day emotionally so far.  Yesterday I went and did my pre-op exam and had a consultation with my oncologist. The consultation, unbeknownst to me, was actually an exam and a consultation.  Turns out you can still have a mild panic attack even if you’re on Xanax :-/  Not only did Dr. Mutch spring the physical exam on me, he went one step further and took the exam to an all new orifice.  Nice to meet you too, sir.  What was quasi-humorous, was that when I asked the nurse to stay in the room with me while I got dressed, she said, “I’ll stand on the other side of the curtain to give you some privacy.” What?! You just watched the doctor do a VERY thorough exam of my undercarriage. I think we’re past privacy.

I was still a bit shaky when we sat down in Dr. Mutch’s office.  My dad and sister-in-law were with me.  I will say that, initially, I would’ve rather eaten live cobras while standing naked on an iceberg than discuss my vagina with my father.  But there’s a lot of va-jay-jay talk going on these days, and I’ve come to terms with the probability that my dad already knows I have one… so… I guess it’s no big deal if he hears how my doctor plans to fix it.  Admittedly, it does make me cringe ever so slightly when he uses the word “vagina” and is referencing mine.  But he is an integral part of my support system, so I suppose a slight cringe every now and then is tolerable.

Right. So we sat across from Dr. Mutch for almost an hour as he went over  the various procedures (complete with sketches) that might take place.   That’s right, I won’t know if I have a uterus until I wake up from surgery.  I did love, though, that he shared my case with at least 2 other fabulous surgeons- one in his practice, the other at Memorial in New York.  He also presented my case to a tumor board.  My case, apparently, is super interesting given some important factors:

 1. Technically I have stage 1b2 cancer, which means, essentially, that it is confined to the cervix and is over 4cm in size.  And at 4.6cm it’s very close to 1b1 (a tumor that is between 2 and 4cm in size).

2. I want to have kids in a big time serious way.

He said that ordinarily with 1b2 cervical cancer, they would do a radical hysterectomy and call it a day, but given the 2 factors mentioned above, my case to have a trachelectomy (where just the cervix is removed and is generally not done on 1b2 patients) is a hot topic.  It sounded like all 3 surgeons would approach the surgery the same way:  Test the margins, if they’re clear, do the trachelectomy, if they’re not, do the hysterectomy.  And in either case, there’s a chance I’ll have to have radiation anyway.  I’m fairly content with this, given that he and 2 other surgeons said the same thing.  I have an appointment with my second opinion doctor on Tuesday, just for peace of mind.

So about today… I’m sad and angry and scared and overwhelmed.  I feel so out of control of my body.  Ultimately I know that all of this is happening with perfect timing and for good reason, but right now I’m in my bed, crying, and typing about it.  A less rational version of me would scream about how unfair this all is. And why me?  And why now? But I’m trying so hard to hold on to my spiritual beliefs. To stay strong and to know that eventually I will feel normal again.  That some of life’s experiences may not go exactly as I’ve always imagined they would, and that’s ok.  Tears make those concepts slippery, though. And right now, it’s very slippery out there.

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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:

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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.

 

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