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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Sleek and Smooth

In October, I said good-bye to my bladder and hello to my urostomy.  We’ve spent the last several months getting acquainted with each other, and I must say, it’s going quite well.  In the beginning, I was concerned that because I’m such a slender person, it would be difficult to conceal my new addition and that everyone would always know I had a pee bag.  To be clear, I realize that I’m blogging about said pee bag right here and that I’ve spoken openly about it on national television. I obviously don’t mind if people know I have a urostomy, but they certainly don’t need to see it all the time. So I began exploring my options.

On a day to day basis, if I’m going nowhere in particular, and because it’s cold outside and I have layering on my team, I generally just wear a tight cami under my shirt.  That seems to do the trick well enough. I have also taken full advantage of the legging craze that’s sweeping the nation.  I pull those suckers right on up over my bag, and poof- the bag disappears (my stoma – which is the opening where the urine comes out of my body and goes into the bag-  is situated to the right of and just slightly below my belly button).  My shirt covers the top of the pants so no one can see that I’m in full Urkel mode under there.

The hospital gave me some sort of compression band that is white and stretchy, and while it does smooth out my profile, it gets super itchy after an hour or so. I wear it from time to time, usually with jeans (because I absolutely refuse to give up my low rise jeans I wore before this surgery, and the bag bulges with air over the top of my jeans as it fills with urine if I don’t use some sort of compression garment).  I’ve also taken to simply tucking the top of the bag down into my jeans. Bottom line: I have to empty the bag more often if I’m wearing jeans than if I’m wearing something with more give regardless which method of smoothing I choose.

I also recently decided to try out Spanx because I had a party to which I wanted to wear a dress.  OK, to be fair, I didn’t want to spend $80 on my first pair so I went to Kohl’s and got Flexees. They were about half the price and worked great!  I went with the style that has shorts that hit mid thigh and the top comes up to just under my boobs.  I wanted the versatility to wear them with skirts or pants. Even I couldn’t tell that I had a urostomy. This was amazing! It was as I stared at my sexy self in my new dress in the mirror that I felt alright about my body for the first time since surgery. These things are a god send where self esteem is concerned.

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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)

numbers1

  • 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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It’s Different When You Stand

Guys will never truly understand what women do in the bathroom. Questions arise like,

“What takes you so long??” or “Why do you always have to go in groups??” or “Why do we go through so much toilet paper?!”

Guys, I’m not here to put your minds at ease. Rather, ladies, I plan to unravel some of the mystery that surrounds what happens when guys take to the toilets. My girl friends and I have a collective 4,682 years of dating under our belts (so to speak… er… well…), and in all those years we’ve noticed a thing or two about how disgusting men are when they pee. Things like:

  • Not washing their hands after they pee. Only when they poo.
  • Drops of pee landing on the floor… and not cleaning it up.
  • Pee crusting out the rim of the toilet.
  • Forgetting to flush (really?).
  • Not putting the seat down. Ever.

Recently I’ve gained some perspective in this department. While the plastic surgeon did NOT fashion a new penis for me, the urologist DID give me a fancy bag that hangs from my stomach and collects my urine. And while I think that at some point in the future we will all look back on this barbaric procedure with utter disbelief that humans were actually this stupid, the fact remains that today my bag and I pee standing up.

Let me outframe for a second to highlight some of the perks here- no longer do I have to put my bare butt on a public toilet seat… or hover above it. Gone are the days of fearing for my socks when peeing in the woods. And when it finally snows, you’d better believe I’m at least attempting to write my name.

Ok, back to unraveling this mystery.

Not washing their hands when they pee. This is inexcusable, and I have nothing further to say on the matter.

Drops of pee landing on the floor. We used to think that guys were just lazy in the bathroom. That at the end of the pee, somehow the last few drops did not end up in their pants but rather on the floor near the toilet, like little wet targets for our nice dry socks. It suffices to say, this may be true for some poor bastards, but generally there’s another evil at play here- It splashes. It hits me in the legs, it lands on the rim, on the floor. There’s really no way to be sure where it is. So trying to find the pee droplets to clean them up would prove to be a laborious task. And one that I’m not willing to take on. If I see the drops, of course I wipe them up, but I’m certainly not busting out the flashlight to search for them, and no guy should either.

Pee crusting the rim. Please see above explanation about splashing. All I can say is that sometimes I honestly don’t see it.

Forgetting to flush. Yes. This really happens. It has happened to me on more than one occasion in the few short months since I’ve been a stander. I’m tempted to say that I forget because I’m used to the routine of having to wipe, stand up, pull up my pants, turn around and then flush. And now I’m not doing any of that. I get it. Guys have no such excuse. They’ve been standing their entire house broken lives. But, there’s something about the fact that I’m already standing that makes walking over to the sink, albeit prematurely, easy.

Not putting the seat down. Please see above comment about not flushing. If I don’t remember to flush, it stands to reason that I’m not going to remember to put the seat down. But in the event that I do flush… My brain believes that the next time (or seven) that I use this toilet will be to pee and I’m just going to have to raise the seat again, so why bother? Let me follow up by saying that I’m a firm believer that the toilet seat should be closed at all times when not in use. Having an open bowl is just an invitation for the toilet devil to throw my make-up and my iphone right in there. Nope… close it. So I want to kick my own ass when I forget to put the seat down. But it happens.

Ok, there it is. I hope this shines some light on the subject matter for you, ladies. And I feel like I might have a few apologetic calls to make to an ex-boyfriend or two after I post this.

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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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Holding On

A few months ago, I went on a rock climbing expedition to Utah with First Descents (FD), an adventure camp for young adults with cancer. Part of what FD does is has you chose a nickname to separate yourself from the you that you’ve known (the you with cancer and all the emotional baggage that accompanies that).  I chose Sunny, for my sunny disposition.

I’ve always been the kind of person that seeks out the silver lining, sometimes to a fault, in less than ideal situations.  For example,  I would stay in a relationship because I swore that sometimes it was amazing and most of the time he was great, when really I should have packed it up and headed straight for the hills at the first sign of lunacy. OK, so I’ve been known to keep the sunshine search parties out long past the point of reasonable explanation, but mostly I’ve found it beneficial to look for the good in situations that seemed to lack all light.

That being said… I’m from the Midwest. And anyone from the Midwest knows that it truly isn’t sunny all the time. The weather literally changes on a dime and can be clear and sunshiney one minute and dark and tornado-y the next. Well, today was one of those days.

I was putting away the clean dishes when the storm hit. Thankfully I had the wherewithal to step away from the breakables, as I neither wanted to grieve the loss of an entire matching dish set nor clean it up later. The meltdown was desperate and loud and snotty and exhausting. There may have been screaming involved. I may have punched the couch, but it was totally his fault for standing so close.  You know what they say- don’t poke an angry tiger with a stick or you’ll get punched… surely someone has said that.

But breaking down is normal.  It’s healthy. Think about a shower. You go in there to scrub up and hose down. And when you’re done, the whole place is one steamy slice of smell-good.  Mwah!  But while you’re cleaning off, soap scum and lime buildup and eventually mildew are slowly taking over.  You have to get in there every once in a while with a brush and some cleaning agents, otherwise you’re really up a creek. For those of you who have ever seen a college guy’s shower, you know.  Having a meltdown is like cleaning the shower.  Once it’s done you can resume usage as normal. If you don’t scrub it regularly, then you really have a problem on your hands.

Anyway, I’m in the calm after the storm right now. It’s night time, so it’s not sunny yet, but it will be tomorrow. I’m holding on.

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