Tag Archives: cancer

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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Broccoli…

Growing up, I would’ve rather lit my fingernails on fire and given myself a back scratch than eat broccoli.  We were a french fries and canned green beans sort of family, but for balance, we sometimes put cream cheese on celery and went to town.  My point is that I didn’t grow up loving vegetables.  I loved fruit, but vegetables had no place on my preference card.

At some point shortly after I moved to Chicago and started truly making food choices for myself, I took a long hard look at how I’d eaten for the first 23 years of my life and decided that I had no idea how I was even alive. Right then and there, I went to the grocery store and bought actual raw produce. Crazy, I know.  I even made it a goal to try as many new foods as possible.  I swore off fast food, and a new me was born.

A few favorites surfaced on my search for fresh nutritional goodness- I fell hard for pineapple, red peppers, and Bermuda onions.  I will say, though, that I have never really enjoyed broccoli. The first time I had it, I dipped it in BBQ sauce to mask the flavor- true story.  Eventually I grew to appreciate it and found some healthier ways to make it palatable.  It was a simple vegetable that I could add to a lot of different dishes, and it quickly became a staple on my grocery list. I wouldn’t go near it if it was raw, but if it was steamed or grilled or sauteed, I was in.

                 

Throughout my treatment, I’ve had several food aversions.  This time around, the aversion is vegetables, particularly broccoli.  I look at other vegetables and think, Someday I’ll enjoy you again. But when I see broccoli, I literally want to gag.  The smell, the shape, the little balls… it all grosses me out. I would be interested in talking with a specialist about food attachments, cravings, and aversions to find out why particular foods set me off during treatment.  I don’t know if such specialists exist, and if not, they should. I think it’s fascinating.

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A Look Back

I was recently interviewed for an article on fertility preservation for the magazine Today’s Chicago Woman.  I referred the writer to my blog and sent her the links to the 3 posts I wrote about the fertility preservation process.  Well, today I went back and read those 3 posts myself to see just what exactly I had sent this woman to read.  I was struck by my own optimism and blind sense of hope. I have an understanding that generally I am a very positive outlook kind of gal, but lately I’ve been more blah than rah.

This quote struck me the hardest.  It’s from my post on December 26, 2011, Baby Baker:

Needless to say, I’m not worried about the cancer. I know that I’m working with the best team available to me. I have every faith in the world that I will get through this and come out the other side a survivor. Yes, it sucks that this is the hand I was dealt, but honestly, we all have some crappy cards in our hands.  The thing that upsets me most is that the cancer is affecting my fertility.

I feel both naive and duped when I read these words.  But the part of me that stays strong and focused when the rest of me needs to fall apart reminds me that I had every reason on December 26, 2011, to believe that this cancer would go away with the first round of treatment and that my life would go on in a fairly normal way.  There was little evidence presented to me that this journey would stretch out for over a year (and counting).

The update on my feelings in the baby department… since my surgery in October, it’s been really difficult for me to hear people talk about their pregnancies.  I seem to be better about seeing an actual baby, and I try very hard to put my own losses aside and celebrate my friends’ growing families. I also always thought that by the time I was 32, I would be well on my way to creating a family.  I keep having to remind myself that, fertility issues aside, I am hardly in a place to be bringing another life into this world! So even if I could carry a baby in my own body, today is not that day, and tomorrow probably isn’t either.  I’m coming back around to fantasizing about what my kids will be like. I think about names and what they will look like and how hard I will love them.  I also think about who will carry them, and maybe I’ll adopt, and I would be ok with just one baby even though I’m fairly certain I’ll get twins on the first try.  It’s something exciting to distract me from the rest of the nonsense going on in my head.

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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.

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Spread the Word… and ONLY the Word

Hey guys! January is Cervical Cancer Awareness Month.  If you have a cervix or not, please be an extension of my voice this month.  Please have the conversations that are uncomfortable to have with the men, women, and young adults in your lives.  The highlight reel would be:

  • Ladies, get your pap smear regularly (and for the love of all that is good, get the follow up if it’s necessary!). Check with your doctor to find out how often you should get a pap.
  • Parents, get your kids vaccinated against HPV!
  • Condoms are not fool proof here.  HPV, which causes cervical cancer (and 5 other cancers), is a contact disease. So unless you’re wearing a full body condom from start to finish when you’re revving up for, doing, and snuggling up after the dibbity, you are at risk of contracting HPV if your partner is infected.
  • HPV has no symptoms and usually clears within about a year of infection, but can “hide” in the body for years.  There’s no way to know for sure when an infection occurred or who the culprit is.  So even if you’ve been with the same person for ever and a day or you haven’t had sex in at least as long, you could still be at risk.
  • Even someone who has only had sex with one partner could be at risk if that person’s list extends beyond +1. And on that note, keep in mind that, while we’d all love to believe that our partners are 100% honest with us, there’s always, always the chance that they aren’t. Furthermore, since HPV is spread skin to skin and not by exchange of sexual fluids, penetration is not necessary to spread the disease. So, ladies, be your own advocate and go get a pap. Better safe than sorry.
  • Boys need to be educated and vaccinated too.  While it’s far less common for males to develop cancer (though the risk is higher in males having anal sex than in those not), men can contract HPV and pass it along just as easily… where on earth do you think all the women are getting it???
  • Cervical cancer is one of the most preventable cancers.  If caught early enough, it can generally be wiped out.  There are rare cases, like mine however, where that is not the case.  I was getting my pap smears like whoa, and it just happened that the cancer in my body was far more aggressive than most (a 4cm tumor grew on my cervix in 3 months; a tumor that size generally takes years to form). All I can say is, I’d hate to think how bad all of this would have been if I hadn’t been so diligent with the screenings.

Please spread the word. If we can save just one person, I would be happy.  Imagine what it would be like if we saved a bunch 🙂

For more information, check out these sites:

National Cervical Cancer Coalition –  http://www.nccc-online.org/index.php/overview

The Yellow Umbrella – http://www.theyellowumbrella.org/

About the HPV vaccine – http://www.cdc.gov/hpv/vaccine.html

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How My Life Changed Forever (In Numbers)

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  • 13 months, 8 days – Length of time since the original tumor was found
  • 12 months, 17 days – Length of time since it was officially diagnosed as cervical cancer
  • 1,190 – Number of miles I moved to receive treatment
  • 10 – Number of embryos I have frozen
  • 7 – Number of eggs I have frozen
  • 85% – Chance that they would treat me, and the cancer would be gone
  • 15% – Where I actually fell
  • 6 months, 19 days – Length of time since my re-diagnosis
  • 6 months, 13 days – Length of time since I first heard “incurable” and was told I probably had 10 months to live
  • 5 months, 17 days –  Length of time since my hair first started to fall out from chemo
  • 2 months, 17 days – Length of time since the surgery that may save my life
  • 15 inches – Length of the scar that runs down my abdomen
  • 0 – Number of internal female reproductive organs I have left
  • 643 hours – Conservative estimate of time I’ve spent in a medical facility since November 18, 2011 (that equals about 27 days)
  • 16 – Number of doctors with whom I’ve consulted on this journey
  • 5 – Number of tumors removed
  • 4, 236 – Number of prayers said and messages of gratitude sent out (by me) regarding my health in the last 13 months and 8 days
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Cancer Free!

The surgery itself went well. It went a bit longer than expected. They estimated 6-8 hours, and it ended up taking closer to 12. I lost a lot of blood and was given a lot of fluids to replace it (I came out weighing 18 pounds more than when I went in). But for the most part there weren’t any real complications.
The surgeons ended up doing exactly what they planned to do. I had a radical hysterectomy (including the ovaries)- which was no big deal since none of those parts worked after the initial rounds of radiation I did back in February. They also removed an entire chain of lymph nodes and some surrounding tissue, my entire vagina, urethra, and bladder. There was nothing wrong with the urethra or bladder, they just happened to be in the way. After they took everything out and tested all the margins to ensure they got all the known cancer (which they did, yay!), they did radiation directly into my body cavity, along my pelvic wall. This was an attempt to get any cancer that they couldn’t see. Then the urologist came in and rerouted my urinary tract. I now have a urostomy, which is a bag that hangs from my belly and collects urine. Here’s a pretty good explanation:http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/ostomies/urostomyguide/urostomy-what-is-urostomy
Then a plastic surgeon came in and recreated my vagina using the left half of my ab muscles and the skin that covers them. Imagine a six pack on my stomach. My new vagina is made up of the top two left cans in my six pack (from the outside everything looks normal down in my lady parts). They then had to stretch my skin to cover the missing part on my belly- and as you know, I’m not a large person, so there was a lot of stretching that had to be done! This was one moment in my life when I wish that I was a little chubby. Extra skin would have been super nice right then. I have a scar that runs down the middle of my abdomen from just between my boobs, down around my belly button and into my pubic hair.
As for recovery, things are going pretty well. I spent 16 days in the Mayo Clinic and a few extra days in Rochester after I was discharged. I was admitted to the hospital in StLouis a couple weeks after I got back for dehydration and constipation. I also got a blood transfusion while I was there. That was last week. Since then, things are going fairly well. My appetite is hit or miss and I have 15-20 pounds to gain. I’m down to about 115. In June, I weighed about 130… so there’s some perspective. I’m skinny and it’s driving me nuts!!! I sleep a lot, but I’m not taking my pain meds nearly as often as I was even last week, so that’s good. It’s slow going for sure, but I feel better every day and that’s a good thing.

As of today, I am cancer free. I feel cancer free too! I don’t know if you remember, but after my first round of treatment, I still had a feeling that it was in there lurking. I hope that this is the end of my journey with cancer in my body and that from here on out it will just be advocacy for me!

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High Fives for Everyone

Dr. Mutch and I have a pretty rad relationship.  He calls and emails me on a somewhat regular basis (including my birthday!).  I have his office number, his cell number, and his home number.  He calls himself by his first name almost every time he calls me and then corrects it to “Dr. Mutch”.  He’s come to expect my high fives when things are going well, and he seems to genuinely like me.  I like that.

Last week I went in for my scans and my regular physical exam with Dr. Mutch.  The preliminary results from the scan showed that things were “stable”… which means that everything is either the same size or has shrunk somewhat.  “Stable” suggests that the chemo is working.  “Stable” is good.  “Shrinking” would be better, of course, but we’ll celebrate the small victories just the same.

Part of this next blurb may be an over-share (as if I don’t have a history of that), but it’s all in the name of a good story.  Here goes.  I’m in the exam room, undressed from the waist down, laying on the table, feet in stirrups.  Dr. Mutch goes in to have a feel around and says, with his finger still inside my body, and sounding as though he’d just found a 100 bill in the laundry, “Oh! This is smaller! You’re responding!” I said, “Seriously?!” as an enormous smile devoured my face.  He said, “Yes! Really!” I closed my eyes and thrust my clenched fists into the air as if I’d just won the Boston Marathon. I then looked over his head as he continued to manually survey my goods.  The resident and two nurses standing in the back of the room were cheering wildly, clapping and smiling right along with me.  As they left the exam room, I got a high five from Dr. Mutch and the resident. This is the greatest medical team on the planet, I think.  Well, at least when it comes to celebrating awesomeness.  And, let me tell you, there’s an awful lot of awesome to celebrate right here.

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Going Bald in Baby Steps

The thought of being hairless was both appealing and frightening. Ultimately, if it meant that I got to be alive to be pissed about being bald, then let the hair fall out! But the truth was that I wasn’t choosing any of this, and so far I had very few superficial indicators that I had cancer. If I could just lose every hair from the mustache down, I would be one happy girl! I’d worked hard to grow my hair out… 3 years! I wanted it to be healthy and long enough to cover my boobs (not sure why this particular landmark was chosen, but chosen it was). By the time the docs told me that I would lose my hair with the new treatment, my hair was about 3 inches from my goal. Of course, right?

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I grappled with this for weeks. I don’t view myself as being overly feminine. I don’t generally wear a lot of make-up or jewelry, and my t-shirts and jeans are only occasionally relieved by a dress, so my hair was what I’d come to rely on as my one girly anchor. After talking with several female survivors who had braved the bald, I decided that I was taking back the control.

The first time my hair started to fall out more than usual, I was in the shower. Up to that day, it was normal for a few hairs to be on my hands when I was shampooing. But that day, the more I pulled on it, the more it came out. I giggled like a kid on Christmas. The chemo was working! If my hair was falling out, that meant that the chemo was in there killing something, so it must also be killing the cancer!

I had an appointment with a stylist a week after that to get a pixie cut, but I wanted to donate my hair and was afraid that too much would fall out before the appointment. I wanted to donate as much as possible, so that night I had my friend Corry cut my hair into a swing bob. This was a variation on a look I’d donned for years and also the shortest I’d ever dared to go.

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This style lasted exactly 2.5 days. Then I waltzed into a salon I’d never seen but that came highly recommended, and sat down in front of a woman I’d never met but who knew my story. I showed her the picture of the style I wanted and explained, “This is the style I want, but don’t stress over it too much, I’ll just be shaving it in a week!” She washed it, snipped it, styled it and was done. She was so fast, and it was so good! I absolutely loved it! I thought for sure I was going to look like a dude, but I was wrong. I looked chic and trendy and HOT! It will definitely be worked into the rotation once all my hair grows back.

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At some point, for some reason, it became clear to me that I needed to have a Mohawk. I’m definitely a Mohawk kind of girl but honestly lack the gumption to ever commit to anything like that… until, of course, it was just going to fall out anyway! Once my hair started to seriously go (which was only a few days after the pixie cut), I called another stylist friend of mine and had her create my next favorite style.

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This awesomeness lasted one whole day, and then it was time to shave it. The sides were already done with a one guard, and the top was falling out en mass anyway, so it shouldn’t have been such a big deal. But it was. Joe started to shave my head, and I took over at some point, then he finished it off. I stood there in shock as I watched my hair fall to the ground around me. No longer was this a fun hair cutting extravaganza. I was being robbed of choice. I couldn’t put a happy spin on it anymore. This was really happening. When it was all said and done, I looked in the mirror. I looked back at Joe and burst into tears. I was bald. And it was horrible.

ImageOk, it wasn’t so horrible. But I was cold all the time! Never again will I criticize the follicularly challenged for their lack of heat retention capabilities. Also, I was BALD! Two weeks prior, I had long hair! Ugh… anyway, we shaved it with a no guard, so whatever hair was still there could be seen, and I looked a little mangy. So about a week later, we shaved it again. This time with a man’s face shaver.

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I like this a lot better. It looks more even. Now my eyelashes have started to go. BUT! My eyebrows are still holding on strong. Was there ever any doubt? I’ve spent every day since my 12th birthday agonizing over the grooming of these Mediterranean beasts… trimming and waxing and plucking and threading. My how the tables have turned! Please stay in. You look so nice up there on my forehead. Good eyebrows. Yes, I talk to my eyebrows.

There was one other gigantic breakdown about my hair, or hairlessness as it were. It happened after a day at the mall. It was the first time I’d noticed people noticing me. Let me be clear- this was not the frat boy rubber necking I’d grown used to. No, no. This was awkward staring quickly followed by looking away unnaturally. Children didn’t even bother with the latter part. My self esteem was faltering, and that was foreign to me.

Thankfully, I recovered quickly, getting cozy with the fact that I don’t have hair today and probably won’t any time soon. I don’t like it, and I still forget that it’s gone. I reach back to take out my ponytail regularly, and, from time to time, I’m startled by my naked scalp when I look in the mirror. It’s temporary, though. And some day, this will all be a distant memory.

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The Cool Has Been Lost

It needs to be said: I am over all of this cancer business.  I generally have a fairly positive outlook on the whole thing, but today I’m just fairly positive that it needs to go away quickly so I can get on with my healthy life.

Today I had a bit of a melt down, and while I was crying, I got even more frustrated with the situation because I can’t even cry without a reminder that I have cancer- the incision from when my port was placed (located just under my collar bone on the right side) is still healing, and all the heave-ho-ing of my chest was painful!  Insult to injury, I guess.

I also turned into a total lunatic during what started as a normal conversation about sex.   The nature of the conversation is not as important as where I very quickly led it.  Out of nowhere I jumped onto a soapbox about how sex is bad and dangerous and we should all be so much more careful about who we’re sleeping with and only doing it with people we truly love and so on and so forth. Yep. I did it. I took the conversation from the logistics of banging it out in a sedan to ‘our bodies are temples’ in one fell swoop.  And when it was suggested that I was overreacting, I took it to the next level with “Oh yea?! I have an STD in my body that is literally trying to kill me! You know how I got that STD?!?! FROM HAVING SEX!!!” You wanna talk about conversation killers… But at least I have new and interesting material to discuss with my therapist on Monday…

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