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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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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First Descents

In October 2003, I was part of a team from City Year that organized the service project for the Outdoor Industry Association convention in Vail, Colorado.  At the banquet afterwards, I sat captivated as I listened to the amazing story told by our young keynote speaker.  He had done more selfless acts in his 22 years on this earth than most people do in a lifetime.  Being only 23 myself and doing some good of my own, I felt I had a right to feel shared pride with him. After his presentation, I waited for the crowd that swarmed him to settle.  I was one of the last people to approach him in the banquet hall and wanted only to congratulate him for his success in the non-profit world and tell him how great it is to see a 20something contributing to society and using his talents for good.  That short congratulatory message turned into a 3 hour conversation, which later turned into a friendship.

At age 18, Brad Ludden started a kayak camp in Colorado for young adults with cancer. First Descents has since grown to include surfing and rock climbing and now has programs all over the United States and even has a few in Central and South America (for more information on First Descents and to find out how to get involved, visit http://www.firstdescents.org).  Back in 2003, I thought the camp was a phenomenal idea and sounded like an absolute blast. My friendship with Brad was, of course, separate from his endeavors in the cancer world, but I followed the happenings of First Descents closely.  I had no idea then how it would later change my life.

When I first found out that I had cancer, Brad was the first person I called outside my own family.  We had not spoken in over 4 years, but he was as warm and supportive as ever.  He quickly connected me to a number of invaluable resources and, in the months that followed, despite his busy schedule, continued to be a source of support for me himself as I navigated my way through the chaos we commonly refer to as treatment.  He said that, without question, I was going to First Descents this summer.  I was ecstatic.

I just got back from the week-long FD program in Moab, Utah.  Yes, climbing and rappelling with such a breathtaking backdrop would have been enough to justify the smile that has not left my face since the trip. And yes, we ran through sprinklers and played Twister and did yoga in the park and sat in the hot tub every night and did karaoke in our lodge.  We laughed as a group more than I’ve laughed with any group of people in a really long time.  We sang in the van and around the camp fire and on the rock… we pretty much sang 90s hits everywhere you can imagine.  We gave creepy hugs and told jokes and pulled pranks and shared stories.  All of that was great, but none of it compares to the normalcy I felt for the first time since my diagnosis.  Everyone there understood. Everyone there had a scar and a memory. And that was our normal.

A weight has been lifted from my shoulders, and a big, giant THANK YOU goes out to Brad and everyone else that has helped First Descents stay alive.

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It’s Getting Hot in Here

Well, it’s official… I’m going through premature menopause.  Yep… that’s right.  My body thinks it’s an old lady.  I have news for you, body. You’re still only 31, and it’s time you start acting like it!

I met with my reproductive endocrinologist today to read the labs I had drawn last week.  I’m a bit anemic, my thyroid looks good, and everything else was screaming “YOUR OVARIES DON’T WORK ANYMORE!!!” Yea, thanks. I had no idea… I thought the whole me randomly catching on fire from the inside thing was a sign of virility. No? Oh, those are hot flashes? Awesome.

So, for those of you who have never experienced a hot flash, let me break it down for you.  Imagine yourself sitting in a movie theater.  You have on a jacket because, as is typical with movie theaters, it’s chilly in there.  Shortly after the previews start to roll, it feels like you’ve lit yourself on fire from the inside.  You take off the jacket. A sweat ‘stache sprouts on your upper lip. Every square inch of your skin is suddenly clammy.  It’s literally all you can do to not rip every stitch of clothing from your body and throw your naked burning self onto the cool concrete floor.  But don’t let anyone see that you feel like you’re inside an incinerator. No, that would be embarrassing.  And by the end of the first preview, you have your jacket back on because everything has returned to normal.  That is what a hot flash is like.  I’ve learned to dress in layers.

When I was in Germany recently, it was hard to sleep some nights because of the hot flashes.  I’ve always put off a lot of heat when I sleep anyway, and my inferno husband just adds to the madness.  So when I had a hot flash at night, it was absolutely brutal.  I must have been a nightmare to sleep with.

But I’ve decided to make nice with the fire raging inside my body. That is to say that I’ve decided to squelch it.  I’m going on hormones. It’s like birth control, but less hormones, and having absolutely nothing to do with preventing pregnancy.  No, no. We’re not trying to prevent pregnancy at this point. Quite the opposite.

Long story somewhat shorter… I get to be on hormones for as long as I don’t want to go through menopause- probably the next 20 years or so.  There are a lot of benefits and some health risks, but those seem minimal.  And there are more health risks if I don’t go on hormones.  In short, the hormones make the menopause go away, and that’s the desired outcome.

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The (In)tolerable

I’m almost 8 weeks out of active treatment.  This means that I’m further away from treatment than I spent in treatment.  While my emotions are still reeling, other aspects of me have settled back into what I consider normal.  I was an absolute freak about some things, and the awesome part is that I couldn’t have cared less what people thought in regards to said freakiness.  My utter distaste for and disapproval of certain things was made vocal without hesitation and with complete lack of anything resembling tact.  It was a matter of life or death that these things be removed from my immediate presence… pronto.

Here are a few of those things:

Meat, especially large chunks of it. I was a tad more tolerant of tiny pieces of meat if it was hidden in a casserole or something, but that was mostly because my nutritionist insisted that I eat as much protein as possible.  Otherwise, I would’ve preferred meat be as far away from me as humanly possible (except that for several weeks all I wanted was a spicy chicken sandwich from Wendy’s, but I was too afraid that the spice would hurt my mouth… more on that in a few…).

My water bottle– I had just gotten it shortly before treatment started. I even put a LIVESTRONG band around it as inspiration to stay strong. But something about the signature Camelback mouth piece grossed me out. That thing lived hidden in a cabinet for two months. I wouldn’t use it. I drank out of plastic water bottles and wouldn’t reuse those either… Bleh.

Soup. Ugh, gag me. I tried it at the beginning because ordinarily I’m a soup fan. And my thinking was that it would be easy to eat and would help with hydration. Nope. All that food swimming around together- even now as I remember my feelings about soup back then my face is twisted with disapproval.

Eggs, prepared any way you can think of.  Initially I was fine with them, and I was excited that I had a source of protein that didn’t totally repulse me. Then one day, I set the egg sandwich down and walked away. Away. I think I told my dad that “I just can’t do it anymore.” That was the end of eggs. I would actually say that next to the ‘large chunks of meat’ thing, eggs were the most disgusting thing imaginable. And to add to it:

The smell of eggs cooking. My dad is an avid egg eater.  I had to be in my room with the door closed if he was going to cook them. That smell made me want to pick up my skinny butt and haul it across town.

The smell of almost any other food cooking, especially meats.

The smell of all things fragranced… including lotions, body washes, air fresheners, and candles burning.  I actually took the air freshener out of my car in repulsion and laid it on the driveway as I was heading out one day. I got it on the way back in several hours later and hid it in the basement (months later, the basement still smells delightful).

– Sort of related, but not really, I couldn’t eat anything salty because the chemo caused small sores to develop on my tongue.  Everything’s saltiness was amplified by about 450%. I learned this one day when I had a craving for tortilla chips… it was a sad, sad day.

OK, I didn’t actually think I was going to die from any of those things, but I did get panicky if they were around me, and I would literally leave the table if a slab of meat was anywhere on it (this made going out to eat an adventure for us all).

On the other hand, there were things that I ate during treatment that I hadn’t eaten in years- either because my tastes had changed or because I knew better… you’ll understand what I mean in a minute…

– Jello

– Kraft Mac & Cheese… yes, the stuff in the blue box with the cheese powder packet

– Canned peaches

– Baked potatoes with cheese

– Any kids cereal… this is one of two things I can say with certainty that I would eat an abundance of.  I would easily take down 3 bowls in a sitting (in sharp contrast to the measly two and a half ravioli I had to force down my throat).

Other things I either craved or tolerated well:

– Apple Sauce, this is the other food I could’ve eaten all day every day.

– Bananas

– Soy yogurt

– Soy milk, in my sugary cereal

– Grapes, although towards the end of chemo I had a hard time with these… the acid was too much for my tongue

As far as I can tell, things are back to normal (I’ve even gained 6 pounds!), though I haven’t had soup since then. And I dug out my water bottle- it is my constant companion.

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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!