Friday I went in for surgery to implant the Medi-port.  It looks like this before it goes in. I was going to post a photo of what it looks like AFTER it goes in, but I know some of you (Meaghan Burdick) are a little faint of heart when it comes to the blood and guts. If you're into that kind of thing, you can check out the More Images from My Hodgkins Adventure gallery. Instead, for this post, I decided on a picture of me wearing this awesome, sequined, bald eagle tank top that Jen Bradwell and Todd Boekelheide sent me as armor.  They said they chose it because it reflected the perfect mix of my midwestern, Michigan roots and rock star sensibilities.  It seemed like the perfect choice for surgery, and I can't wear it without making my signature, patented Ozzie Osborne Face.

Okay so back to the port, let's just say....ouch.  They implant the device under your skin, just above the um, "lovely lady lumps" and then attach the tube to a main artery.  The nurse can then "access" the port (that's fancy doctor speak for "stick a needle there") and administer chemo drugs that way instead of having to go through the delicate little veins in the arm. It also means that during chemo treatments, I'll have both hands free for arm wrestling competitions and other cool stuff, provided I can stay awake for more than 15 minutes. 

The downsides are: a) they cut me; b) they cut me; and c) they cut me. 

Other downsides (besides the fact that they cut me) include that you can see the port through my skin (ala “Alien” - so weird) and that it will leave a scar.  Actually, come to think of it, the scar part is not so bad. I'll just add it to the collection I started before I got cancer, back when stupidity was the main reason I ended up with scars.  (Remember to have me tell you about the time that I accidentally did a flip over a friend's couch and broke a glass coffee table...with my knee.)

The recovery time was supposed to be a day or two, but here it is 3 days later and I still feel a little the Nupogen horse's evil twin has kicked me in the chest.  Bastard.  I always think I'm prepared for them, but somehow they still manage to sneak up on me. No small feat for a horse. 

I’m up and around, just sore.  Mostly it hurts to stretch my neck, I can’t carry my purse on the right side and I can't sleep on my stomach - which means I can't really sleep.  On the upside, I’ve made a sizeable dent in my reading list.

Here’s the history of the port: I was going to try to ride out the chemo wave by getting drugs via IV in my arm.  I (foolishly, as it turns out) thought ports were only good for people who don’t like needle sticks.  I don’t mind them and never have...definitely not enough incentive for surgery, more pain, more scars. Then my first day of chemo, my favorite nurse Dionne, said “you don’t have a port? I highly recommend the port.”  I asked her why, at which point she said something *no one*, especially no one with letters after his or her name, had mentioned before:
“the Adriamycin can be necrotic to the skin.”  Necrotic is doctor speak for “causes tissue death”.   As in, acts like a flesh eating zombie.

WTF??!? 

“Oh yeah,” Dionne explained, “if it leaks it’s really painful and you might need plastic surgery to fix the damage.”   Um….THIS is a whole other conversation entirely -- as in "I’ll take 'Information That Would Have Been Nice to Have From My Doctor a Month Ago' for $1,000, Alex."

Upon further research I learned that chances are small, but…still.  Much like every other decision with all things cancer-related, I feel like the choice is “do you want to get bitten by the lion or the grizzly bear?”  Ummm…. “The lion has serrated teeth and it will leave a nasty scar, but the bear’s bite is likely to give you a nasty infection. Think it over and let me know which you prefer.”  Ummm….I would prefer to be on the beach with a margarita...

Mostly it’s a good reminder of something I keep learning over and over. As many of you know, this year has been a mash-up of all things life and death:  Losing my mom, watching my sister give birth to my beautiful niece Aubrey, and then finding out 9 days later that I have cancer.  And through it all, I’m realizing that as much as I hate them, many clichés exist for a reason.  Things like “her death left a hole in my heart that can never be filled” or “a baby brings you so much joy” or "information is power" and “you need to be your own best advocate.” 

The last part is a lesson I *keep* learning throughout in this process -- first, when I felt the initial lump three years ago (and the doctor in SF sent me for an ultrasound, said it was just a swollen lymph node that would go away.)  And most recently last week, when the head chemo nurse told me I could have the surgery whenever because "we can use the new port the same day it's inserted!" (really? because if anyone had come within ten feet of my new port on Friday, I would have shanked them.  I'm not kidding.)   What I'm trying to say is that being your own best advocate is a real skill - a skill that I am constantly honing. Ditto with things like trusting your instincts, asking questions and then more questions, and pushing back against the “experts” when what they tell you doesn’t jive with what you’re feeling or what you know to be true when you're really quiet and just listen to your body. 

Charlie gave me the best advice on this front: "pretend like it's Aubrey who is sick and needs something.  How far would you go to get her what she needs?"  And the answer is:  as far as it takes. And I wouldn't care if I offend some doctor, or some nurse thinks I am being "pushy".  So take that cancer - I got the info, I'm all ported up, I'm not afraid to push back and I'm coming for you.

Yesterday was round 3 of chemo.  Which means I'm 25% done. Which sounds comforting, but really makes this whole thing feel like running a marathon. In fact I am reminded of my dad's words of wisdom ten years ago when I told him I was going to Boston to watch the marathon:  "whatever you do, do NOT stand at the 16 mile mark and scream 'you're almost there!'"  I think that happened to him when he ran the Detroit marathon and he almost punched someone.

In general it went pretty well. I read part of the Vanity Fair article on Lindsay Lohan (Lindsay's always good for making a girl feel better about whatever is going on in her own life,) took a little benadryl nap and woke up to my sister bringing me a very yummy lunch that did not make me nauseous.  Plus I got to wear this awesome t-shirt courtesy of Misty. I'm gonna call all of that a win. 

The only downside was the nurse had a hard time finding a good vein for the IV.  This is particularly worrying because I don't usually have problems with my veins, so it could mean the drugs are starting to take their toll on my insides.  And that means I think I might have to abandon this whole pipe dream of not getting a port.

For those of you who don't know about the port, it's a device that gets implanted in  your chest and allows the nurses to administer the chemo drugs directly and isn't as hard on the veins.  I was trying to avoid it, because it involves another surgery and who wants that?  Then again, I wanted a pony for my birthday and I didn't get that either, so...

I'll know more about the port surgery tomorrow so stay tuned for breaking news on that front!

Control. Janet Jackson sang about it, and it's something we all take myriad steps to try and carefully orchestrate in our lives. Control over our bank account, our job, our appearance…and when things are going well, it's something that’s easy to take for granted.    

I’ve been thinking a lot about it the last few days because I am very most definitely starting to lose my hair.  You can’t really tell by looking yet, but the signs are there…on my pillow, in the tub after a bath or -- my personal favorite -- covering my hands every time I run my fingers through it (which used to be a lot, but I’m quickly learning to develop alternate nervous tics.  I’d like to keep what remains up there for as long as possible.)

My curls have pretty much defined me for the past two decades, but cutting them was surprisingly less traumatic than I thought. I guess finding out you have cancer puts things like a bad hair day, in perspective.  That said, I’m getting used to this cute little pixie cut and really, who wants to be bald?  Most guys stress about losing their hair (see: Rogaine, also “comb over.”)  Being a bald woman, well let’s just say getting used to the idea is…an adjustment.

So here I am, thinking I had come to grips with the whole hair thing, and I'm realizing that having cancer is just like experiencing grief – and I’m moving through the stages. Right now it feels like there aren’t enough cute scarves in the world to make this better.  Then again, six months ago I couldn’t imagine having short hair, so I guess that’s how it works – it feels a scary in the abstract, but then you actually lose control, and you can either embrace or retreat. There is no standing still.

This whole hair discussion reminds me of a man I saw at chemo last week.  Chemo happens in a large room set up with 12 or so La-Z-Boy style chairs in a semi-circle, each with a patient hooked up to an IV dripping his or her own particular mix of cocktail. Let’s just say there’s not a lot of privacy, so you can both make friends and be all up in everyone else’s business.  (This violates both HIPAA laws, and the sensibilities of my sister Annie who, as a Benefits Manager, is all about HIPAA laws.)   Anyway I was sitting with my dad, chatting and laughing and attempting to use my janky grasp of ASL to try and communicate with the deaf woman next to me, when I heard this man across from me say in a very plaintive and somewhat angry voice "Do not stick me with that needle. Find another way. I’ve been stuck six times already this week and I'm sick of it. I do NOT want to be stuck anymore.”  

I looked up at him.  His eyes betrayed a mix of weariness, defeat and stone cold fear. He reminded me of a wounded bear nursing a lame paw and threatening to swat anyone who got too close. At first I felt sorry for him, this grown, 50-something year-old man pushing back like a child against something so much bigger than him.  “You just gotta roll with it,” I thought, perhaps a bit too smugly. And then I was hit with a tough realization: I’m only two treatments in, and already I dread going to chemo.  How am I going to feel in December? 

It’s true I come from more of the, “well this might not be fun, but we’ll just make the best of it" school, but here was a very real reminder that cancer and chemo are scary shit.  Under normal circumstances, getting stuck over and over again with no real say in the matter, would constitute torture.  And if you experienced unexpected and extreme shooting pain up the arm (thanks chemo drugs!) under normal circumstances, you’d head to the nearest ER.  But these are not normal circumstances.  We have a new "normal." And most of the time, it sucks.

Later at that same chemo session, I was absentmindedly twisting my hair into little curls when the nurse said "oh, you're not a puller, are you?" - (I'm not.)  Six months ago I would have had no idea what she meant. But when she asked, I knew. I had talked to other friends who had been through my same chemo who told me that, rather than wait for the slow, tortuous process of watching their fall out little by little, they would pull it out in clumps.  Sounds a little disturbing, right? Then again you're probably not losing your hair.  I'm guessing that a few years ago, it would have sounded disturbing to my friends, too.  But then it became about wresting a tiny bit of control from an inherently insane process.

So mostly this is all a stark reminder that, at its core, the idea that any of us really has control is an illusion.  Those people who are dealing with severe illness, trauma or any of the other “things that happen while you’re making other plans” are the like the canaries in the coal mine of life.   And embracing loss of control while you’re still trucking along the mine shaft, blissfully ignorant, makes the inevitable curveball a little easier to take.   So while I still feel empathy for that guy, I also have hope. I believe in my heart that years of practicing how to embrace abandon have prepared me for this moment.

I also know that I learned from the best: my momma. 

It doesn’t get anymore out of control than not being able to walk, or relying on a complete stranger to help you do things like shower. Or go to the bathroom.   And yet here is a woman who, thanks to the ravages of MS, was down to use of only one of four limbs (her right arm, to be exact) and went --  BY HERSELF -- to Dubai. Which is in the Middle East.  Sure it’s the Vegas of the Middle East but still…by herself.  For a whole week.  Did I mention she went by herself?

But then again, she was embracing challenges as far back as I can remember. Like the time when I was five and Annie was four and an epic Michigan blizzard was about to pound Ann Arbor, and we had literally NO food. None.  The car was broken down and we had food stamp vouchers but no way to use them and we were about to be trapped inside for days on end.  Instead of doing what would have made total sense under those circumstances (curling up in a ball in the corner and crying hysterically,) she bundled us up in snowsuits, walked us to the corner and proceeded to hitchhike.  I remember thinking we were violating every rule she had ever taught us about going in cars with strangers.  I’m guessing she was thinking about things like our basic survival.   Either way, she made is seem like just another adventure. She told the first creepy looking guy who pulled over to buzz off (at which point he called her a not so nice name) and we went with the second car that stopped – another single mom with her kids also running to the grocery store to stock up ahead of the storm.

So that’s all to say, it wasn't the illness that made her strong – it was her spirit.  And honing that spirit was probably what saved her sanity and sense of humor when the MS took almost everything else. 

As I say, I learned from the best, so I named this post after a really great poem by Rilke (the same dude who inspired the dragon slaying princess imagery) called The Man Watching that brings me comfort when I think I can’t handle one more thing. It also really encapsulates the way my mom lived her life: head on, with confident abandon, learning how to enjoy the ride - and when to just hang on tight.

I went in for chemo last Friday, and with my white cell counts now well over 3,000  I was able to get my 2nd treatment.  (Thanks Neupogen! You’re like a bad boyfriend, first you make me feel like shit, then you bring me flowers…)

My dad drove down from Michigan to be with me.  He was going to come down for treatment #3 on Oct 11, but “Immune Gate” as I like to call it, threw off my whole schedule, so when I decided to go in for treatment this past Friday he called and said “can I come down this week instead?” 

I know I’m 35 and a big girl (although it might be hard to tell from the duckie neck pillow I now use at chemo thanks to Charlie,) but I have to admit, it was really nice to have my dad here.  He drove me to chemo, told me jokes (that somehow seemed a lot funnier once I got the benadryl) brought me ice, and later when I got tired and cranky and stopped appreciating his jokes, was very patient with me.

He even brought me a shirt.   My stepmom actually gave me a shirt last month from she and my dad that says things like “strength” and “love” and “hope” on it.  I adore it, but I guess it didn’t capture that certain jen e se quoi that my dad was looking for, because he came up with his own and had it custom made at a little t-shirt shop on Mackinac Island.   It’s a white shirt with a bunch of blue iron-on letters that say “Could I Get This Cocktail to Go?”  I had to write the question mark in with a sharpie since my dad is not big on punctuation, but  it’s pretty awesome and he rightfully was quite proud of it. 

In fact I’m thinking of stealing his idea and mass producing my own line of funny cancer tees that say similar things like “Can I Get this Cocktail on the Rocks?” with a photo of an umbrella drink or maybe a girl doing the Sprinkler on the dance floor.  The cocktails really aren’t that dissimilar when you think about it, and while the process of actually ingesting this current mix is not quite as much fun as a girl’s night out, the hangover is pretty similar, so I’m just going to go with it.

This is all just a long way of saying that my dad rocks.    I’ve known that for years, but while it’s probably one part having cancer and 10 parts losing my mom,  it especially resonates this year.

Here’s one of life’s cruel ironies: the people closest to us are oftentimes the easiest to take for granted.  Our parents drive us crazy. Our friends let us down.  The flip side of letting people in, is that they have now have the ability to push our buttons like no one else.  And sometimes the Things That Drive Us Crazy can eclipse all of the reasons we let them in the first place.

I cringe thinking about all the times I would roll my eyes when my mom called back for the 5th time in a row while I was on some work deadline, to tell me yet another seemingly insignificant detail about her new sheets.   But that pain brings with it a huge lesson that has stuck like glue:  once again in the midst of all this  (I’ll just call it what it is - crap) I find myself grateful.  Grateful for my dad and his willingness to drive 9 hours just to sit with me and hold my hand, and grateful to forces bigger than I, that have given me the ability to appreciate my pops while he’s still to around to tell him.