I’m 37 and I have purple hair

It’s that time again, folks.

It’s birthday time!

This is going to be another stream-of-consciousness post, which often tend to be rambly; you’ve now been properly warned.

This particular birthday brings up a bit more of the feels than usual, because this year the days of the week and the dates of the month are the same as they were in 2003, when I had my cancer surgery 17 freaking years ago.

I had to start prepping for surgery on Sunday the 9th, which meant no solid food after noon that day. My family took me out for brunch and I ordered my usual Belgian waffle with fruit and whipped cream. Normally, I’d never finish it, but that day, knowing solid food wouldn’t pass my lips again for at least a few days (it would turn out to be 4 full days), I said challenge accepted and I forced myself to eat every. last. bite.

Monday was my birthday. I only remember dinner that day, where I sat at the head of the table and ate chicken broth and jello while my family had pizza. God that sucked. I opened some gifts, but mostly just wanted to go to bed so I could get the surgery over with as soon as possible.

Surgery was on a Tuesday. They took me in over an hour late, and if you know me, you know I operate based on strict, rigid expectations. I couldn’t handle waiting any longer and had my last (of many that had preceded this horrible process) waiting room meltdown. By the time they took me in to get me prepped, I was a complete wreck. I was under so much stress that they couldn’t get a vein for my IV (juuuust this year I finally stumbled across the name for the reason my veins close up under stress and my fingers go white when it’s cold – Raynaud’s Syndrome) and allllll I wanted was to be fucking unconscious.

That Tuesday was the worst day of my life.

Wednesday was the day I was told my mass was cancerous.

Thursday was the day I was allowed to eat solid food once more – my reward for the anticlimatic post-surgery fart.

Friday was Valentine’s Day, of course, and I finally got to go home.

All that hell was 17 years ago! It was a lifetime and yesterday all at once. A lot has changed in that time. The experience has most definitely shaped the person I am now.

I’m using change as a rather rough segue theme, here, but that’s how my brain works. My birthday will forever cause me to simultaneously think of the past and the future and how they affect each other in my life.

In general, I don’t like change. It’s jarring to me. Even positive change. Which means that being the mom of two young kids is almost constantly jarring. These little creatures are constantly changing, wtf!! Having to keep up with them and everything that comes with them is exhausting. And by everything, I mean everything. Schedules, routines, schools, teachers, homework, clothes sizes, equipment (meaning, you need bottles until you don’t. you need diapers until you don’t. highchairs, packnplays, all of it), language, skills (my kid can SPELL! F-U-C-K.), attitude, their preferences in everything (food, TV, toys, clothes), their phases and habits (one kid finally eats! the other currently does not.)

On an average day, keeping up with all of this isn’t so bad. I get the feels here and there when I need to give away all the rest of the 2T clothes, or sell the cloth diapers, but then there’s the time my kid wrote me the sweetest letter in school. Or when I covertly spelled S-N-A-C-K to my husband in front of the kids and my son GOT IT.

But the bigger changes give me varying levels of anxiety.

My mom friends going back to work (don’t leave me!). Seriously, our lives are so busy that simple life changes might as well mean that one has moved to the moon. I’ve worked hard to build friendships here in Oregon and to maintain friendships far and wide, but if I’m being honest, I feel like they are stunted because of the season of life we’re all in (parenting young kids). Building friendships in fragmented in-person playdate conversations and random text messages is super hard, y’all. What’s scarier still is that I only see the seasons getting busier and situations getting trickier, and it sucks. (Another piece for me is that some of my mom friends will read this, so this is me being vulnerable in putting it out there.)

Kids getting busier with school and sports and activities and not knowing what or how much to put my kids in and worrying how this will affect my energy level and mental health. It’s hard to know what my kids will like or be good at or will want to stick with. I don’t want to do too much, but I do want them to do something. And do we do what everyone else is doing? My comparison monster gets the best of me sometimes, and it’s especially strong on the extracurricular activities rat race front of modern parenting. Pair that comparison monster with a moderate case of parenting-related FOMO, and there’s a great recipe for rumination-fueled anxiety. Tell me I’m not alone in this!

Me going back to work. My biggest concern here is about dramatically increasing my workload and thus having a huge negative impact on my energy level and mental health. By dramatically increasing my workload, I mean that I’ll add all the stress and responsibility and time away from home/kids/husband while still needing to get done everything I already do now, most notably all the invisible, logistical work. Will I be scheduling doctors appointments at 1am because that’s when it needs to happen after work and dinner and cleaning and making lunches and maybe some TV? This is majorly why I’m dragging my feet in starting this process. I’m finally getting some breathing room within this parenting life, and I’m more than a little hesitant to give up that extra time.

I can feel the changes looming, you guys. They are there, just there, on the horizon. They won’t be all bad, I know, but right now, it’s all unknown.

I suppose, in some clumsy attempt to tie everything in this post together, the lesson is that I’ve handled some pretty dramatic changes in the past, and so I will again, with as much awkward grace (oxymoron?) as I can muster.

So I sit here, in this Starbucks, on this sunny(!) Monday just having had a pretty great massage. I’m 37 and I have purple hair. Right here, right now, life is pretty good.

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Dramatic. Irrational. Crazy.

My last blog post turned out to be really cathartic to write. I expected that it would be, just not to the extent that it was.

I woke up the next morning and temporarily forgot about the post. Then I picked up my phone and saw the dozen or so alerts about it and went oh yeah.

As I laid there in bed before getting up for the day, I started to read the comments- some public, some private – and tears started streaming down my face. They were good tears. I cried several more times that day, and it was all good. It was like I had been carrying a weight around with me for months and I finally set it down, only I didn’t start to feel lighter until the morning after.

The weight isn’t completely gone, and I’m not sure it ever will be, because I’m human. But it sure feels better. I’ve had conversations and little how are yous and coffee dates with friends that I wouldn’t have had if I hadn’t written that post. It broke the ice that was floating on top of my ocean of anxiety that wouldn’t have been broken otherwise.

I’m very glad I wrote it. And since it worked so well, I’m going to keep doing it. What did one of my friends say? (I went and found it.) She said, “Putting it out there seems to somehow take away a little of the power.” She’s right, it does. I’m taking the power back.

So, onto another aspect of my anxiety: health and mortality.

As many of you know, I had ovarian cancer at age 19. Initially, I was incorrectly diagnosed with IBS, because who thinks a 19-year-old with bloating and constipation has cancer? No one. I was in college and living on my own, cooking for myself for the first time (if you could call what I was doing “cooking”) and so it made sense. I was eating crap and full of stress! Not to worry.

But what happens when the worst diagnosis possible actually comes true? To be fair, it wasn’t the worst possible because my life was never threatened. However, the c-word is fucking scary, shocking, and not at all what was expected.

What resulted after surgery was several things: 1) depression because my life had been put on hold- I had had to take the semester off from college and move away from friends and back in with my parents, and 2) anxiety because I was given a recurrence rate of 30% (THIRTY. PERCENT.) where the only available treatment was more surgery.

Time passed. I had cancer checkups every three months with normal results. I volunteered, got a summer job, went back to school, moved out. My life resumed and I moved forward.

But.

The anxiety never really went away. For ten years, in the back of my mind I wondered, worried if I was going to be able to have kids. But I also worried every time I got sick.

Was it the flu? OR WAS IT PNEUMONIA?!

Was I just constipated? OR HAS MY CANCER COME BACK?!

Do I need glasses? OR DO I HAVE GLAUCOMA?!

Am I just anxious and hopped-up on coffee? OR DO I HAVE DANGEROUSLY HIGH BLOOD PRESSURE?

Am I having a panic attack? OR AM I DYING FROM A HEART ATTACK?!

All this may look super dramatic, but it’s my truth. (And anxiety is just that- DRAMATIC. Irrational. Crazy.) Of course you try not to expect the worst, and most times, it’s not the worst, but it happened to me. That one time, the worst actually happened and it has fucked me up ever since. If it happened once, who’s to say it won’t happen again?

The icing on the cake is that now that I’m a mom, this anxiety extends to my kids. I worry when they get sick. I have a hard time deciding when to freak out and when to be cool because my freak out meter is extremely warped.

Take this one step further and I worry about dying and leaving my kids. This isn’t always a conscious worry, but it’s more a general mortality fear that’s always at the back of my brain. This fear is normal. But what isn’t normal is when my anxiety takes it and runs a marathon with it.

Because I analyze everything to the point of exhaustion, I quickly realized that what led to my recent panic attack was a perfect storm of mortality triggers. Observe:

1. Several weeks prior, a family member my age had a serious and shocking heart attack.
2. I was reading Sheryl Sandberg’s book about her husband’s sudden, untimely death and how she was left to cope raising two young kids by herself (one of my worst nightmares).
3. A few hours prior, I found out an old friend’s brother unexpectedly died.
4. A few minutes prior, I was experiencing heartburn which my anxiety mistook as chest pains.

…don’t panic!

Right then and there, I thought some of my worst fears were coming true, and it took me a minute to convince myself otherwise and calm the fuck down.

Writing this, unpacking it, and breaking it down really helps me. I need to understand this beast so I can kill it. (Or at least trap it and tame it?) This issue is next on the growing list of things I plan to tackle in therapy, but since therapy is only once a week, I figured I’d get a jump start.

Does anyone else out there feel this way about health/illness/motherhood/mortality?

Is anyone else out there fighting to keep their anxiety in check?

I see you [anxiety]. I see you and I’m onto you.

 

Amazingly Wonderful Worries

Eleven years ago today, I had my cancer surgery.

Today’s anniversary feels very different from the rest, in a good way.

Is it because the farther away I get from it, the less it hurts?  Partially.

It mostly has to do with the fact that I’m pregnant.  The cloud of fear and uncertainty that has been lurking for so long has mostly lifted, and it feels wonderful.  I feel like I can more fully leave my cancer behind, stop worrying about what my body can’t do, and look forward to what my body can do, what it is doing, and what that means for my future and the future of my family.  I am so blessed, and I just didn’t know how much until recently.

I say the cloud has ‘mostly lifted’ because I do find myself still worrying about how after-effects of my cancer and surgery could affect my pregnancy.  I suppose there’s a part of me that feels like this is too good to be true and that I shouldn’t get my hopes up, that my cancer could still rear up and kick me in the ass.  I suppose it’s normal that a small amount of fear like that will never go away.  And sometimes it’s hard for me to balance these continued fears and still make ample room for the joy and excitement I know that I also deserve to experience.  It does help that my doctor doesn’t seem too concerned about affects from surgery affecting my pregnancy.

Overall, my worries have definitely shifted, and I am grateful for the direction in which they have shifted.  After acknowledging my ever-present cancer worries and then placing them back in their box at the back of my mind, I get to worry about “normal” things now – am I taking good enough care of myself?  Is the baby developing ok?  Will delivery go ok?  Will fe be healthy? How the heck am I going to manage to be a good parent?  Etc…

I am thankful for these worries.  They mean I have something amazingly wonderful to worry about.

Which reminds me about something I’ve said before – that my experience with cancer and the resulting fertility uncertainty means that I get to be even more joyful than I would have been otherwise.

Eleven years ago I experienced one of the worst days of my life, and that’s ok.  It doesn’t define me, and I have allowed it to change me for the better.

Now get back in your box.  You’re distracting me from my joy.

Waking Up

I became aware of the horribly bright fluorescent lights as I regained consciousness. I saw my dad first – a blurry version of my dad. I looked past him to the clock on the wall. 9pm and change. Wait, could that be right? They took me in at 2-something…that’s way too long.

“Is that clock right?”
“Was it benign?”
“Can I still have babies?”

These were the three questions I remember asking immediately upon waking up. I also remember my dad giving me an affirmative answer to each one- which shouldn’t have made sense.

Before going in for surgery, I was told that if my tumor was benign, the procedure would take about an hour or 90 minutes. If they found cancer or if there were complications – longer. I had been out for over 7 hours.

Upon hearing the answers I wanted to hear, I started to take stock of how I physically felt. My body didn’t feel like my own. I felt broken. My midsection felt like it had been run over by a semi truck. A nurse suddenly appeared at my side and shoved a button in my hand. She told me to push the button when I felt pain. I pushed it right away and kept pushing it every time I remembered to, which felt like long intervals since I kept drifting in and out of consciousness. I was later told that I pushed that damn thing every 2 minutes or so. No amount of pushing that button could have taken the pain away.

I felt so numb. Blindingly so. After my parents left the room, my boyfriend at the time was allowed to stay. At one point I looked up at him and it looked like he was crying. I asked him if he was and I honestly don’t remember his answer. I just wanted to go back to sleep. I wanted to wake up once it was all over.

I pushed the button.

The next morning my surgeon came to see me. He told me that they found some borderline malignant tumors. Malignant. Plural. With an ‘s.’ This information barely registered. It had completely engulfed my left ovary but I got to keep my right one.

What?
Say again, please?
But my dad said…
…do I have to do radiation? Chemo?

No. Those treatments won’t work on your kind of tumors. Besides, we think we got them all, and now we just wait and see.

WAIT AND SEE?! My brain was screaming but my face stayed blank.
Apparently now my job was just to focus on getting better.

Let me get this straight. You rip me open, take out pieces of me, then run me over with a truck and tell me medicine won’t work for me, and now it’s my job to get better? I thought that was yours. You broke me. Now someone put me back together.

I pushed the button again and everything got blurry.

—

That was exactly 10 years ago today. I just sat down to write and this just kinda came out, wasn’t really planned. It feels good to write about this, so bear with me because y’all might see more of these.

In other news, I turned 30 yesterday and I think I felt all the feelings. All of them. I got drunk on wine with friends and we went bowling. The best part- costumes were required. I brought back the 80s like it was my job. In preparation, I plugged in my crimping iron that I hadn’t used since the 90s, and it promptly began to smoke. Once the putrid smell of burning plastic subsided and got me sufficiently high, I used it on my hair and the results were hecka rad. I even unearthed my old slap bracelets and those plastic thingies one used to clip the bottom of one’s oversized shirt off to the side. Mini skirt, tights, leg warmers, oh my!

I suppose after all this I should post some pictures. Stay tuned, my little psychos.

50/50, Cancer, and an Ovary

When I started this blog, in the back of my mind I knew the time would come when I would be blogging about cancer.  It was only a matter of time, as I think about this every year, and every year I get one year farther away from it.  The memories get fuzzier and fuzzier, but sometimes something will bring the memories back with driving force.

taken from IMDb.com

That something was the movie 50/50, which I saw for the first time last Friday night.  A warning for those of you who haven’t seen it – I’ll be revealing a few details of the plot (but not the ending).

50/50 is the story of a 27 year old man who is suddenly diagnosed with a rare form of spinal cancer and is given a 50% chance of survival.  The movie is loosely based on the experiences of Will Reiser, one of the screenwriters.

This movie hit extremely close to home for me because almost exactly 9 years ago I underwent exploratory abdominal surgery to remove a low malignancy tumor that had fully engulfed my left ovary.  This time of year for me has ever since been fairly sensitive and a time of reflection and self care.  This coming Friday, I’ll be turning 29 years old (for the first time) and Saturday the 11th will mark my 9 year cancer-free mark.

I struggle a lot with my identity around this whole cancer thing.  My cancer was in this gray area in many ways.  It was borderline malignant, which means it was a slow-growing, noninvasive tumor that was not life-threatening.  Some professionals call this cancer, others call it precancerous  (I call it shitty).  I also never knew that I had cancer until I didn’t have cancer, which makes it hard for me to own the experience of ever being a cancer patient per se.   For these reasons, I don’t identify as being a cancer survivor necessarily.

My house looked like a flower shop! So much love!

The short version of the story is that I had symptoms of bloating, pain, firmness, and constipation that grew increasingly worse for about 4 months before I was incorrectly diagnosed with Irritable Bowel Syndrome (IBS).  A month later, I went to see my doctor for what I thought was an unrelated issue – an itchy skin rash -but soon after my treatment I was (and still am) convinced my body was just manifesting its cancer-related panic through my skin.  Once my doctor finally felt my unnaturally firm abdomen during this visit, the IBS diagnosis flew out the window and the whirlwind of specialists and testing began and ended with a surgery date set for one day after my 20th birthday.

Going into the surgery, my doctors believed that I had a fluid-filled ovarian cyst that could possibly be a teratoma since it had calcium deposits (After looking up exactly what a teratoma was, I was more than freaked out. Get this alien spawn out of me asap!)  I was given a surgery date with an oncologist, just in case the cyst turned out to be cancerous, but they said that wasn’t likely.  I was both devastated and relieved at the same time.

They performed the surgery and told me the bad and good news the following day: that the cyst had been borderline malignant and had spread to two other places in my abdominal cavity, but they were confident they had gotten it all.  They had removed my left ovary and scraped cancer growths off my right one.  There was no promise that I would be able to have kids.  The only further treatment I was to have was frequent screenings to make sure nothing had grown back.  In the case something did grow back, the only treatment was more surgery.  I was scared shitless.

The effing cancer hasn’t come back and it’s been (almost) 9 years, knock on wood.

So, back to 50/50.  Cancer is both hilarious and devastating – thank you 50/50 for capturing that!  The movie was so validating; I had never seen a cancer story about a young person that was humorous and just spoke to (parts of) my experience.  [Disclaimer: I am in no way trying to make light of other people’s experiences with cancer that were far more serious and devastating than mine.  I fully realize that I was amazingly lucky and I am very, very thankful for that.]

Neighbor girls I babysat for made this for me...I'll forgive the name misspelling

Ways 50/50 was right up my alley:

Cancer is hella sexy.  Adam’s (the main character played by Joseph Gordon-Levitt) best friend Kyle (played by Seth Rogen) was like my best friend Nicole.  I remember her asking me if she could make fun of my cyst, and my answer was: “only if it’s benign.”  Well, it turned out not to be, and it took me a little time, but I still let her make fun of it and we had fun because of it.  When I came back to school after taking a semester off to heal, she introduced me to strangers (read: used me to pick up hot guys) at the campus bar as “her friend who had cancer.”  We got such a kick out of watching people not knowing how to react.  Nothing like an existential crisis involving cancer to get your life-affirming libido all revved up.  Rawr.

“I’m peeing right now.”  I don’t care what anyone says – catheters are freaking amazing.  No freer feeling in the world than allowing urine to trickle on out as soon as it’s finished brewing.  And like hell I am getting outta this hospital bed feeling like my body got run over by a truck.

[A side note on medical equipment – You know those thingies that squeeze your legs every so often so you don’t get a blood clot?  Feels like heaven was plugged in and then wrapped around my legs.  I told my dad to make the nurse an offer for them – I wasn’t leaving the hospital without those bad boys.]

Worst moment ever – Having to sign all the paperwork before surgery saying that the doctors can take out as many organs as they need in order to save my life, if necessary.  One of the shittiest things I’ve ever had to sign.  I woke up not knowing how much of me was still inside.  This moment in the movie was the most difficult for me to watch.

Families sink or swim – Like screenwriter Will said in the special features, he handled his cancer and treatment quite well while family and friends didn’t know what to say or how to act.  For me, this crappy situation brought out both the best and worst in the interpersonal dynamics of my loved ones, sometimes leaving me to figure out how to cope on my own (and cope I did!).

The movie included therapy!  With a young, female therapist!  This thing was practically written for me.  Suddenly I could see myself in both roles.  I was the patient in the recovery room who got passed a business card for a hospital social worker (whom I never went to see, but looking back, I wish I had).  A few years later, I was also the young, extremely nervous therapist just starting out and desperately wanting to say the right magic words to make people feel better.  I loved getting to watch just how obviously terrified the therapist (played by Anna Kendrick) was as the brand new shrink.  I once heard a fellow therapist say that she’d like to go back and apologize to all her clients she saw in her first two years as a therapist; some days I most definitely agree.

Tumor is spelled J-E-L-L-O

Like Adam and Kyle in 50/50, I looked for humor anywhere I could find it:

• My stomach muscles were sliced straight through during surgery, so I couldn’t do anything that required that muscle group – standing up straight, sneezing, yelling, blowing my nose, laughing, etc.  It’s pretty hard not to laugh when you’re filled with the joy of being alive; my tummy muscles actually began to regain strength through involuntary laughter.  Word to Patch Adams!
• If Adam looked like Voldemort, all bald and ghostly pale, then I looked like Gollum, all hunched over and skinny as fuck.  I went in search of brownies and pizza (the Preciousssss) as soon as my appetite came back.
• I would have liked to have taken my tumorized ovary home to display on the mantel, but my surgeon wouldn’t allow it (he didn’t give me a satisfactory explanation, either…dumbass hospital rules).  Instead, I attempted to make my own artistic interpretation out of jello leftover from surgery prep.  I think I succeeded in grossing out a few people.  Score!
• To this day, my light beige vertical 12 inch scar turns bright pink when I am drunk.  It’s my drunk-o-meter, bitches!

In closing – thank you, people who made 50/50.  It really, really touched me and reminded me that cancer isn’t a joke, except when it is.