Category Archives: Health and Healing

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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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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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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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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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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It’s Been A Long Time

It’s been a while since I’ve visited my blog for any reason.  Don’t get me wrong… I’ve thought about posting something new tons of times, but every time, that inexplicable yet overwhelming feeling washed over me… that feeling that said “Don’t talk about it” or “I’m tired of talking about it” or “There has to be something else to focus on besides cancer”.

I had a Niagara Falls-esque outpour of emotions right about the time my scheduled treatment was ending.  It was Friday, March 2; the last treatment on my calendar- it was internal radiation.  I had already rung the bell for my last chemo treatment and the bell for my last external beam radiation (there is literally a bell that you ring and then everyone cheers… I cried both times I rang those bells… in fact, by the time I got to the bell for external radiation, I’d already been crying for at least 10 minutes). I was looking forward to ringing the bell one more time to celebrate not only my last internal treatment but my last treatment period.  Well, at some point during the treatment, it was determined that my hemoglobin count had dropped again, and my doctor was recommending another blood transfusion.  He said that my counts would likely go up on their own since chemo and radiation were over, but that it might take several weeks. Let’s be clear here- I did not want the transfusion. I had mentally prepared myself for 7 weeks of treatment, NOT 7 weeks and 1 day. My strength and courage had a shelf life of 7 weeks and they had expired.  It was Saturday, the day after the expiration date, and I was talking with my doctor about my options in regards to the transfusion.  I decided that I would get the transfusion so that I could get back to living sooner.

Cue the Falls.

I was a wreck. I was crying uncontrollably. Later my psychologist would tell me that this happens to a lot of cancer patients. They get an “end of treatment” date in their heads and are able to stay strong until then, and when that date comes, they realize that treatment hasn’t really ended.  They remember that for the next 5 years of their lives they will be poked and prodded and scanned regularly to ensure the cancer is actually gone.  With this realization comes the torrential downpour of all the emotions they wouldn’t let themselves experience before “the end of treatment”.  Ok, so at least the erratic, extreme emotions I was having were on the spectrum of normal.  As bizarre as it may sound, I felt so much better hearing this.  I may have felt like an absolute psycho, but at least I was a normal psycho…

The guys filming the documentary came back to film my transfusion and my appointment with Dr. Mutch.  They also interviewed me for several hours one day.  Creative editing aside, I’m interested to see how I come across, given my state of mind at the time.  Yikes is all I have to say.

In a nutshell, that’s all that’s been going on for me since then.  My psychologist is leading me through some activities to help me establish my “New Normal”. It’s exactly what it sounds like.  My life is no longer going to be like it was before, and I have to figure out what will be normal for me now.  All of this is extra interesting given that my “normal” was in the process of being all shaken up when I found out I had cancer in the first place.  If you’ll remember, I had recently moved from Chicago to work in Florida, but quit that job literally days before my diagnosis to move back to the Midwest, the hubs (who I’d secretly been married to for a year, and had known for only a smidgen longer than that) was in Afghanistan, and I was going to move to Germany with him after his deployment. Somebody, please, for the love of all that is good in this world, point out the “normal” part of what my life was doing pre-diagnosis. And then help me figure out my “New Normal”.  Thanks.

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Week Five

Ok, admittedly, this post is exactly one week late. But truthfully, I haven’t really been in a sharing mood.  Cancer is just about the last thing I want to talk about ever, including in a blog that I started whose sole purpose was to keep all of you informed about my cancer journey. All week, I kept thinking ‘I need to post about week 5, nothing really happened, but I need to post about it anyway.’ And, clearly, I never did. But here it is now.

My sister-in-law came with me to chemo and with her she brought two things for us to do. We got to stuff my 5 year old nephew’s valentine’s goody bags for school, and we got to make a popsicle stick math game for same said nephew. That night, my heart melted when I called my brother to chat about something and my nephew asked to talk to me on the phone. He thanked me for helping make his stuff and then he asked if I was still sick.  At the end of our brief conversation, he told me to get better soon… ugh… that kid is so sweet.

On Valentine’s Day, I helped my friend in her kindergartener’s class party.  Afterwards, I hung out at her house for dinner.  Her 8 year old son knew that I was sick but didn’t know anything else.  He saw me take one of my nausea pills and asked again what was wrong with me. My friend and I took him into the bedroom away from the two younger kids. Off the cuff, I explained cancer to an 8 year old. Thank god I’ve worked with little kids for a long time. He seemed most excited that I got laser beams shot at me every single day. Kid, you have no idea.

That’s about it. I’ll post about Week Six in a little while.

Week Four

Again, a fairly uneventful week. Yay!  So today you get a post of ramblings…

I’ve been seeing a psychologist on Mondays during chemo.  I like her- she’s young and she seems to “get it”. She gives me assignments to do every week, and I think they’re helping.

My energy was pretty high most of this week. Cherie and I went to the History Museum and Union Station (what’s left of it) on Monday after chemo. Turns out the History Museum is interesting, and Union Station is a skeleton- we did see the fudge workers sing though. We had dinner at Hard Rock, and people that worked there when I did are still there.  I guess there’s something to be said for commitment…?

Thursday I hung out with Brandi and her family all day. She cut my hair and did my eyebrows. My Sasquatchness had far exceeded social norms…

Friday was internal radiation. Afterwards, I had a craving for Steak n Shake. I was so drugged up that my memory skips from pushing my plate away from me at the table to waking up 6 hours later in my bed. Hmmm… After fact checking, I was conscious all the way home and made my own way up to my bed, I just don’t remember it.

Saturday night, Joe and I saw Breaking Dawn at the cheap theater. Meh. The best part about the whole experience was the people sitting around us. Oh.my.word.

On a slightly different note- I’ve somehow failed to mention this yet, but my pubes are falling out from the radiation. I can finally stop stalking Groupon waiting for a laser hair removal deal!

Other than that, my side effects have been minimal. I’ve had a little constipation, which is contradictory to everything I’ve heard about radiation, and a little diarrhea.  I’m tired a lot, and my appetite is hit or miss.  But it seems like no matter how much I eat, I’m going to lose weight. The doctors say that my body is burning so many calories in the healing process that with a vacillating appetite, it’s hard to keep up. I’m trying my best!

4 weeks down, 3 to go!