Monday, June 25, 2012

And it's 1, 2, 3 - what are we fightin for?

I'm sure you've heard the old adage - One day you're rejoicing about JP drains being removed and the next you're septic and in the hospital again. (Or was it don't count your chickens before they hatch? - I'm always getting those two confused...) At any rate, that's pretty much what happened.

My JP drains were pulled Wednesday (much rejoicing, yadda yadda). Thursday I had a follow up appointment with my general surgeon where he noticed an ever so slight pinkish hue on the lower part of my right veal cutlet (that's what the expanders remind me of). He prescribed antibiotics and over the next 24 hours I proceeded to get "sicker than snot".

I'm still amazed by how fast it can happen. Though I've seen it as a nurse many times, I've never been on the receiving end of such a severe infection. Fever of 101.9, chills, pain and overwhelming fatigue - it should have been obvious to me that I was in over my head. But, due to the fact that I may or may not be a little bit stubborn - it took my husband coming home early from work and forcibly dialing my doctors phone number for me to begrudgingly agree to go in to the Emergency Room.

It's a good thing he knows me as well as he does. If not, I probably would have expired right there beneath the soft glow of the Netflix screen, with my last words being "let's just give the antibiotics a little more time to work".

As it was, my plastic surgeon met us in the waiting room, rushed us to ER and then up to surgery where he performed an incision and drainage of the right breast and removed both of the veal cutlets.

*This photo was taken from before my first surgery. This time around I looked the same but sobbing hysterically and more "sepsis-y"    

And that's how I ended up having my third surgery in a month, receiving my second pair of designer TED hose and a matching set of plastic water mugs with scrunchy straw included - and also deciding that I need to change my priorities. I will not be pursuing reconstruction again in the future.

I came home from the hospital yesterday and will have to receive outpatient IV antibiotics for a few days until my blood cultures come back clear. The infection was staph - but thankfully not one of the super-bugs like MRSA. I will walk away from this one - but I would be kidding you if I said I'm not shaken from the experience. And for as much as I thought I wanted the C-cup at the end of the rainbow - it turns out that what I really wanted to know that was that life is going to continue after all this madness. It will. I have enough risk and enough battles up ahead of us without adding to it. I'll get used to being Skipper instead of Barbie. Some things just aren't worth the risk. And after this weekend, I've learned that veal cutlets are in that category - at least from my perspective.

It also turns out that I'm strong enough to be able to reinvent myself, to still see myself as a strong, beautiful woman in spite of whatever physical changes I must endure. Who knew? And thankfully, I have a strong, amazing husband who is helping me to learn that about myself. Because, it turns out, C-cups weren't the most important thing to him at all. It was me all along. (Plus there are some super hot mastectomy tattoos we've been looking at that don't involve follow-up MRIs. There is nothing sexier than that!)

I grew up with a musician father and the the soundtrack of my childhood would be eerily similar to the Woodstock soundtrack. But for those of you not familiar with the Country Joe and the Fish song I reference in this blog entry title - it goes a little like this: (Everyone else - I expect to hear you singing along. But before we start, you should know there is a warning label on the brown acid circulating among you.)

And it's 1,2,3 What are we fightin' for? Don't ask me I don't give a damn.

Next stop is Viet-nam.

And it is. Well, maybe not THE Vietnam - but mine. So, lace on your combat boots, folks, with chemo just a couple of weeks away - It's about time to start round 2.5 of this fight.

(And for those of you out there still singing along in your head - just stop at this verse. Nobody's coming home in a box in this story.)

Wednesday, June 20, 2012

Who's got two thumbs and no more JP drains? This kid - that's who!

So, funny thing - for the last couple of weeks since my mastectomy on June 4th, I've had drains lodged in both sides of my chest draining what to the untrained eye appears to be pure nasty.

Well, maybe this isn't really a funny "ha-ha" story - but bare with me.

Ok - it's hard to rock paper gowns and JP drains. Even with "duck face".
For those of you unfamiliar with this particular medical marvel, Jackson-Pratt or JP drains look a little like a rubber grenade attached to a long flexible straw, are held in place by a suture and are a short term option to remove extra blood and fluid after a surgery. They work by using mild suction and were particularly important in my case because after my first surgery, I started to bleed again and had to be taken back to OR to remove a hematoma.

But, while very important, these drains are a pain to deal with - both literally and figuratively. They make it difficult to take a shower - one hand has to hold the grenades, they have to be stripped of blood clots and emptied regularly (kudos to my non-medical mother who literally had to suppress gag reflexes in order to bravely do this for me when I was too weak to help. And also to my super amazing husband for not only not making me feel self conscious about the whole "fem-bot" look I am sporting these days but also made me giggle by making weird fart sounds when he emptied them. What can I say? I'm easily amused. And that guy can be seriously hilarious.) They also require one to wear a special camisole with pockets on the sides for the grenades which I can only describe as "geriatric chic".

So today, I met with my plastic surgeon again and he finally took them out. (He and his nurse also oohed and awed over how great his handiwork was coming along. Having relative strangers oogle my sort-of breasts would have been weird two months ago - but these days, I'm used to it. I'm also used to having breast "mug-shot" photos done from every angle possible. Weirdly, I always end of smiling for these. Note to Robin and Jenny: I've thankfully managed to refrain from making any "you're a tiger references" thus far) Taking the drains out hurt a bit - they were laced up and around my expanders and Chris said you could see them just sort of snake out when they were pulled. My mom said she was glad she wasn't there to witness this because she probably would have hit the floor. I don't doubt this. Removing the drains looked exactly like this:

Well, I had my eyes closed, but I'm fairly certain that's how it went. But the point is - I feel so much better now that those dang drains are out. I can breathe, I can move a little easier, heck, I might even try laying on my side tonight. I know, I know - let's not go too crazy. But it feels awfully good just to feel good tonight. So thanks, doc - keep up the good work!

Life, Distilled

There are five stages of grief according to the Kubler-Ross model which most people are by now familiar with (and which was drilled into us in nursing school). According to Ms. Kubler-Ross, when crummy (or catastrophic, if we are using her terms) things happen to you, you must experience all five.

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

Looks good on paper. Neat, tidy and efficient.

But in reality(or at least in my personal experience)what actually happens is something more along these lines: Denial, bitterness, sarcasm, acceptance, depression, Netflix, depression, xanax, sarcasm, avoidance, dark humor, acceptance, bargaining with husband to watch 30-Rock instead of some war documentary on Netflix, denial, sarcasm.

Lather, Rinse, Repeat.

It isn't neat. It isn't tidy. And the frustrating part is that lurking around each corner is a new trigger that can set the whole cascade of emotions back into action. The whole process is exhausting.

Which is probably why for the last several days I've been holed up in what I've deemed "my nest" on the couch, perusing Netflix instead of participating in - well really much of anything. Ms. Kubler -Ross might label this as "depression". And she probably would be right. But Ms. Kubler-Ross would probably also miss out on the "Amazing Bodies" documentary I found that featured not only conjoined twins but also dwarfs. Take that hoity-toity five stages of grief lady.

But I digress.

Yesterday, in the middle of a particularly engaging episode of "How I met your Mother", my own mother called to ask me why I hadn't written anything on this blog for a few days. I told her I was trying to wait out the current Netflix stage until I had something to be optimistic about again. I told her I felt sad and that I just didn't have it in me to be happy or funny right now. And then she said something that made me turn off the television (well, after the episode was over anyway): If you really want to help people, you need to be honest about what this is like for you - otherwise they won't be prepared if it happens to them.

And she's right. I do.

So, here's the truth: This really sucks. Recovering from surgery hurts - worse than I could have prepared myself for. And I can't do the things I used to be able to do - little things like getting dressed by myself, opening childproof medicine bottles, driving or drinking a glass of wine without feeling guilty. There are days when I'm afraid of not being strong enough to be able to face the next phase of this fight, afraid of losing my job, afraid of losing my identity to being "just a cancer patient" - whatever that means. Sometimes I feel guilty about all of the hardships I have placed on my husband - financial, emotional and just plain logistical (just bringing me around to all these appointments is a part time job). And I cry - a lot. And at weird times.

But, I'm also pretty lucky. Because even on the days when all I want to do is hide from the world - I have amazing people around me that keep reminding me what a beautiful place the world is. Reminding me that there is still so much to do and experience and learn.

So, I guess what I'm trying to say here is - thank you. Thank you to all my friends and family who stand by me on a daily basis - drain tubes and all. Those who know when to pull me up off the couch and when to just sit there beside me. Thank you for letting me know that it's ok to be devastated sometimes - because in all honesty, I am sometimes.

Even with chin held high - cancer takes away so much. It takes away the illusion of health and infallibility - something that can never be returned. For even at the end of this battle, when all the surgeries and chemo and radiation are done - that lurking threat will always be there. Cancer takes away the ability to feel safe in ones own body. And worse - it strips that illusion from my children, who don't understand why mommy has to get sick to get better, who have to ask things like "Mommy, what's a cancer" and "Mommy, are you going to die?"

And I don't always know how to answer.

Thank you to the people who continue to keep our family in their thoughts and prayers and actively work to make my life easier (sometimes behind the scenes) - even if it's just to make me smile. Those who bring food and send silly gifts or write notes on facebook just to let me know they are there. But more than anything - thank you to those I keep closest to me - who allow me to let my guard down and cry. Not the soap-opera-lovely,tear running down one cheek kind of cry - but a lets-get-real "ugly cry". The kind of gut wrenching, snot everywhere, sob till you can't talk, breath, think, or anything else - except be in the moment. Sob past the point where it's even rational anymore - just a sincere response to this maddening existence that we've been thrust into somehow.

Because dammit it's not fair. At 32, I shouldn't have to face my body being mutilated, being thrust into premature menopause, face treatments that may cause me to develop osteoporosis, damage my heart and possibly cause me to develop other, more insidious cancers in the future.

But I'm learning there is no fair in life - or unfair for that matter. That this is "just an is". And maybe that's ok.

Cancer forces you to face ones own mortality in a way that nothing else can. It is the line in the sand: Life before diagnosis, Life after diagnosis. It changes every aspect of the way you see yourself, the way you see the world - and not all of that is bad. Facing ones mortality has a way of putting life in perspective. It allows you to do and say the things we all should be doing and saying anyway. Because through it all, cancer - and the ability to fight it - is still a gift. Life, despite all its uncertainties and sometimes unbelievable strife and heartache is a gift. And if it means I get to stick around to be part of that - I will do whatever it takes.

I am so thankful I get the chance to fight - because so many others do not. I am thankful for the science that is allowing me to have a chance to do so - and for the physicians and clinicians who sacrifice so much of their own personal lives to help save mine. But most of all, I am thankful for the knowledge that I'm not alone in this battle. So, if I haven't told you lately, thank you - every single one of you - for being in my corner of the ring. Your kindness and support does not go unnoticed. It means everything to me - to our family - and it will eventually help me get back off the couch.

As for now, if you'll excuse me, "the nest" and season 3 of 30-Rock is calling my name. But, with any luck, I won't be there for long.

Wednesday, June 13, 2012

On a scale from 1 to 10

As a nurse, I have popped the question an obscene amount throughout my career. "What's your pain level - on a scale from one to ten?" This I chirp, while pointing to a familiar laminated series of smiley faces that progressively become more and more embittered.  A "10" relays about as much emotion as an M&M chopping onions. 

Here is the problem with pain scales - It's all subjective.  There are dramatic patients who rate their pain as "an 11 at least" while chatting it up on their cell phone and ordering takeout.  There are also stoic patients who may rate their pain as a "1 or 2" while clenching their jaw,  breathing shallow and refusing to get out of bed.  Numbers and crying M&M's just don't do an adequate job of describing pain.

Thanks to personal interests that weigh heavily in the "nerd" department I have not had a great deal of experience on the "other side of the table".  No broken bones, no stitches - I had a thyroidectomy a few years ago (notably after this experience I nearly recorded "flirty" as a side effect to Versed this time around) which was not terribly painful.  But I've given birth naturally twice and consider my pain tolerance to be decent.  So, while I knew going in to this mastectomy the procedure would be painful - I was not prepared for what I experienced post operatively.

I awoke to a pain so thick and heavy I found myself paralyzed beneath it - drowning in a bath of scalding butter.  I couldn't breathe, I couldn't see and there was no escape.  It lasted for what felt like eternity but was probably only seconds after I awoke from anesthesia.  Finally, somehow, I found the magic words. Ten - it's a ten.  And relief came in the form of the greatest invention of all time - Fentanyl.  Eventually, I began to get a stronger grasp on pain control and was transitioned to a PCA (patient-controlled-analgesic, It's the machine that gives a steady dose of narcotic and allows the patient to give an additional dose when they need it).  But even with this - and being fairly opiate naive (The most I usually take for pain is ibuprofen for an occasional headache) the pain has been significant.  And by the time I left the hospital three days later with prescriptions for percocet and muscle relaxers clutched in my hand, I had been asked my pain level enough times to realize the absurdity of assigning a numerical value to the experience.

This is why I feel the pain scale should be replaced with something more relevant - movie clips. 

 For example, on my proposed scale a pain level of 1 could be correlated with a clip from a Chuck Norris movie because as we all know, Chuck Norris feels no pain.  

Chuck Norris' tears cure cancer - Too bad he's never cried.
A 10 on my scale would clearly be the scene from "The Princess Bride" where Wesley is tortured with the life-sucking machine by the 6-fingered man in the Pit of Despair. 

This is how I picture PACU before they gave me fentanyl.

Today, it's been a week since I left the hospital and I'm not going to kid you - I've had better weeks. I'm still taking pain medication around the clock and am unable to lift or even move my arms much yet which gives me the appearance of a tiny feeble Tyrannosaurus Rex.  I'm getting stronger every day though and my pain level at this point overall I would rate a 4 or 5.  Which would correlate with this scene from one my favorite Monty Python movies:

I'm not dead yet people!  I think I'll go for a walk.

Monday, June 11, 2012



1.  Most of our friends have dogs.  Some of them with a penchant for chew toys.

2.  The kids could eventually catch on to the whole "we're taking a nap" scheme.

3.  Chris might develop pavlov-esque reactions while strolling through Petco.

Perhaps it's best not to fly too close to the sun - we'll stick to the squeaker-less variety.

Sunday, June 3, 2012

Yes, They're Fake...My Real Ones Tried to Kill Me.

I've spent a lifetime lamenting that - how can I say this delicately - my cup doth not exactly runneth over in the lingerie department.  So, I would be lying if I said I wasn't looking forward to meeting with my plastic surgeon to discuss reconstruction.  

The breast reconstruction process itself is complex.  After the general surgeon performs the mastectomy where the breast tissue and involved lymph nodes are removed, the plastic surgeon takes over.  The pect muscles are dissected along all the borders except the sternal border.  A plastic expander is put into place beneath the pect muscle and then secured using cadaver tissue because my tissue will be gone.  In 4-6 weeks, after I heal from that surgery and around the same time I start chemo, the plastic surgeon will begin injecting saline into the expanders at about 50-100cc at a time.  This process stretches the skin gradually until over time I reach the size I want to be.  At that point, we schedule a second surgery to place the implants.  After recovery from that, a third surgery occurs to form nipples and then they are tattooed to appear realistic.  Heavy, right?  Keep in mind I didn't know any of this when we first met with our plastic surgeon. 

Here's how I pictured the consult would go down:  A soft porn version of Willy Wonka and the Chocolate Factory with a room full of boob options lined up like eye glasses at the optometrist.  "What do you think of this model honey?" I would ask, as my supportive husband picked out something from the "C" shelf.

Here's what happened:  My very competent and wise plastic surgeon discussed all the risks of implants (they can leak, pop, poison you and at the very best must be replaced every 10 years) the surgery (blood clots, impaired healing, blood loss, death) as well as possible complications of the reconstruction itself (the implants may not settle correctly, be lopsided or worst case scenario form what I affectionately deemed "the uniboob"). He discussed that complications occur in about 1 in 20 cases (to his credit he used the phrase "driven hard and put away wet" when he discussed women that are more likely to suffer complications such as smokers, obese, have diabetes and not healthy.  I respect a clinician who can use that term and somehow still remain professional.) it would be about a year before the process would be complete and that when it's said and done most women are very happy with their silhouette while wearing clothing. 

It was at this point that I burst into tears and demanded to see an album of my nipple options. 

This was not my best moment.  It turns out that everyone has their breaking point.  I could handle the cancer diagnosis, seemingly endless diagnostic tests and planning for chemotherapy.  But nipples sent me over the edge.  So, I sat and cried in that exam room while my (now slightly panicked appearing) plastic surgeon searched for an elusive nipple gallery.  

And all the while my supportive husband handed me tissue, held me and told me it was going to be ok.  The funny thing is...I believed him (but that could have been due to the xanax he slipped me).  Even though we didn't have the "brown chicken, brown cow" moment I thought we would, somehow it didn't matter.  We were going to get through this - together. 

By the time my now defeated surgeon reappeared to admit he could not find the gallery which was somewhere in his vacationing partners office, I was ready to move forward.  

Thanks to the wonders of Google I've now spent an unreasonable amount of time searching reconstructed breasts and various nipple options (it's a wonder our computer doesn't have a virus at this point) and so long as I don't end up with the dreaded "uniboob" I think everything will be just fine.