THAT GIRL/THIS GIRL

Back in 2001, I opened a LiveJournal (LJ) account and started journaling.  Through my many years of activity on the site, I met gobs of fabulous people, many of whom are now among my closest friends.  Some of them live nearby, some live in other parts of the country, but all of them experienced some of my "formative" adult years.  We were all blogging and participating in a social network before either of those terms existed in our vernacular.  When I started my LJ, I was 30 years old, weighed over 200 pounds, wasn't overly excited about my career, and was very, very single.

In 2003, I got married, had twins, moved, and was diagnosed with breast cancer when our kids were 6 weeks old.  It was quite a year, and it's all recorded in 1s and 0s in my LJ account.  I had not anticipated having to go through chemo during that bout...but in February of 2004, I found out that I would have to have at least 4 rounds of Cytoxan and Taxotere.

Yesterday afternoon, I read through those journal entries to gain some insight into what chemo was really like.  And I walked away with this general impression:

"Who the hell is that whiner?"

Oh my GOD!  I could not stand reading those posts.  I even skipped over some parts because I couldn't take the complaining anymore.  I'm serious--I was disgusted with myself for throwing myself such a massive pity party.

A few hours later, one of my LJ friends makes a post about in her journal about me.  A long, beautiful post, full of words like..."amazing," "awesome," "grace," and "hero."  Hero?  Seriously???  She lived through those whiny posts and calls me a hero???

As I processed this in my Ativan induced coma last night, I realized that perhaps I wasn't as whiny as I thought.  I had met my husband, gotten married, spent 8 months pregnant with twins, sold a home and bought a home all in the course of a year.  Then WHAM.  Cancer.  Surgery.  Chemo.

Any of you who have been pregnant can appreciate the toll that growing a person takes on your body.  Toss another person in there to bake at the same time and boy-howdy is that a special kind of exhaustion.  Then they slice you open, and a few days later, you go home with a big belly wound and two (adorable) balls of Demand.  You don't sleep: you nap, on and off, for 3 months.  Toss in a move, a cancer diagnosis, and a mastectomy, and you've entered one of Dante's Rings of Hell.

THAT GIRL--the one who had spent 8 months pregnant, then had a c-section, brought home newborn twins, then had a mastectomy a few months before moving--THAT GIRL then had to undergo 4 rounds of chemo.  THAT GIRL gets to whine a little.  In fact, THAT GIRL gets to whine as much as she wants to whine, and I'm going to listen to her.

But THIS GIRL has spent the last 8 months learning to run.  Literally.  THIS GIRL had never put on a pair of running shoes in her life, and she did three 5K races this fall.  THIS GIRL signed up to run a half marathon in June.  THIS GIRL has a great husband, sweet children, fabulous parents, the most amazing friends, a thriving career, and now she's a runner.  Make no mistake, THIS GIRL will be whining a little every so often, but THAT GIRL could never imagine THIS GIRL:  THIS GIRL is starting the journey stronger, faster, and happier than THAT GIRL could ever imagine herself.

"What Can I Do?" A Primer for Family and Friends of Cancer Patients

I need to start off by talking about that title.  It is enormously hard to type the words "cancer patient" in reference to myself.  In my mind, the cancer is gone.  They are treating me for cancer, though, so that makes me a cancer patient.  I'm going to own it.

When we hear that a friend or family member is a going through any tragedy, our natural reaction is to say, "What can I do to help?"  And we really really mean it!  How, though, do we translate our words into actions?

I'm still a student of health issues--a doctoral student, perhaps, but still a student, and I'm still learning how to play the role of "patient."  Even with all my experience, my answer to the question of "what can I do for you," is "hmmmm...not sure yet..."  Even with all the experience I have on chemotherapy and its effects, I don't know how it will affect me this time.  Different drugs, different job, different family life...everything is different than it was the last time.

But here's what I DO know.  You genuinely want to do something for me, and it will make YOU feel better to do something for me.  If you're my friend, you're an awesome person: I don't hang out with losers.  Because of your intrinsic awesomeness, my status as "cancer patient" will make you uncomfortable, and it's taken me two other experiences in this role to realize something very important:

My current situation will allow you to be your best self.

Of course, my gut reaction would be "oh, don't worry, I'll be fine."  I don't want you to worry about me or be a bother.  But guess what?  You're still going to worry, no matter what I say or do, and the best thing I can do for you is allow you to do something to resolve that uncomfortable part of your spirit by sharing your inner awesomeness.

Let me share a little known secret, though: most new cancer patients (or anyone facing a major life stressor for that matter) have no idea how you can help, because they have no real idea as to what they need.  We need you to just jump in and do something, and the best thing that YOU can do is something that is GENUINELY YOU.

This is my third go-round with cancer, but I've found myself in many other situations where I needed help (spinal fusion surgery, twin mama, etc...)  So here's my list of things that you could do for me that would make my life easier.  I don't want you to do them all--or necessarily any of them!  I want you to be you--and if you're reading this, you're doing what I need most--letting me tell my story.

1. Please take care of my loved ones.  I have a husband, 2 kids, and a set of parents, all of whom are worried and stressed.  I worry about them worrying about me.  Here are some ways you can do that.

• Get my husband out of the house.  He is being a major trooper and is allowing me to do pretty much whatever I want with whomever I want.  Take him out for a beer, take him to some guy movie that I'd never want to see...something.  The guy deserves a break.
• Invite my kids over or out to play with your kids.  They're pretty social creatures and they like meeting new people.  Evan is into anything Minecraft, he plays baseball, and he's full of energy that needs to be expelled.  Heather is an American Girl and Monster High lover, and really just likes anything girly, sparkly, and sweet.  
• Do something nice for my folks if you know them.  Really, they're being pretty good sports about this, but I'd be a disaster if my daughter was dealing with cancer for the third time.  

2.  Let's go out!  Assuming I'm feeling okay, let's go out--shopping, lunch, drinks, movies, whatever.  Let's keep life normal.  And I can use the distraction.

3.  Bring your kids over for a play date.  But you stay, too!  We can drink some wine, tea, watch a girly movie, or whatever while our mutual kids are entertaining each other.  Everyone wins that way--my kids are entertained and distracted, and we get some time together.

4.  If you're crafty, be crafty.  If you knit, make me a snuggy cap or warm socks.  If you sew, make me a cute hat, a little trinket...whatever.  If you like to do paper crafts, send me a handmade card.  Do you like to cook?  I love food.  I may lose my tastebuds for a while, but my goodness, my family will appreciate some creative cuisine for a change.  

5.  Pick up the phone and call.  Right now, my phone is ringing off the hook, but that will stop in a week or so.  I'd love to chat!

5.1 (A corollary to 5)  I don't want to just talk about me.  I want to hear about YOU.  Whatever's going on in your life is important to me.  Just because my issues may be a little tougher than your current issues doesn't mean that your feelings are unimportant to me.  If you had a bad day at work, tell me about it.  If I don't have it in me to listen, I promise I will tell you.  But otherwise, you are important to me.  Talk away.  I'm probably tired of talking about chemo!

6.  Forgive me if I forget details of what's going on with you.  I really care about you and want to stay on top of your life, but between the general stress of my situation and the drugs they're giving me, I may forget details...and those details may be important to you.

7.  Share my story.  Share my blog, share my story, spread the word.  In the past, I have shunned the attention--but darn it, cancer three times?  As a 25 year old AND as a mother of newborn twins?  Someone who has never had a mammogram or physician detect the lump but has found them herself?  Come on--we need to get the word out here.

8.  Do something for someone else.  Then tell me about it!  Remember, you're awesome, and I want you to share your awesomeness.  

9.  Don't ask, just do.  In general, I don't know from day-to-day what I'll need, or even what I want.  Just do.  Invite yourself over.  Invite me out.  Bring me whatever you want to bring me.  But don't just do it because you think I need it--I only want to you DO if you genuinely want to do.  You have other friends and family members and I have no expectations of you.

Friends, this can be a bummer of a time, or we can choose to use it as an excuse to do some things we've always wanted to do but never made time to do.  Illness and other traumas are a reminder that life is short.  Let's go live it!

Let's Get This Show on the Road--Chemo Cocktail #3, With a Nod to Chemo Cocktail #2

This time it's going to be different--both because I'm different, and because the drugs are different.  In the breast cancer world, Cytoxan and Adriamycin are the most commonly used cocktail.  Due to my high dose chemo of 1995, I've reached the lifetime maximum of Adriamycin, so that bottle is off the shelf.

(Note the intentional reference to cocktails, bottles, and shelves...yes, it helps to think of these as an IV martini...really!  It is more fun to imagine you're drinking a cosmo rather than being systematically poisoned by your physicians.)

Up next, we had Cytoxan and Taxotere.  Cytoxan was the devil I knew...Taxotere was the devil I didn't.  I had a little bit of anaphylaxis on my second round of Taxotere (which is akin to saying that you are a little bit pregnant.)  so they loaded me with steroids and other meds to complete my last 3 rounds and ran the drugs reeeaaaaallly slowly through the IV.  Since I'm allergic to Taxotere, and presumably it's sister drug Taxol, my new oncologist wants to avoid those meds, so they're off the cocktail menu as well.  

This time, we're trying a brand new combo--Carboplatin and Abraxane.  Apparently, Carboplatin gets is cancer killing ability from platinum.  You know, kinda like Goldschlager...perhaps not as pretty, and certainly not nearly as tasty.  Not that I'd know--when the idea of cinnamon flavored schnapps appealed to me, I was a poor starving grad student and couldn't afford it.  By the time I could, I'd had my fill of sweet schnapps and had moved on to good gin...but I digress.

Abraxane is a pretty cool drug--it is the same basic ingredient in Taxotere and Taxol, but instead of using a toxic solvant to deliver the drug to cancer cells, it uses a nanoparticle albium bound technology to deliver the drug right to any malignant cells, in effect bypassing healthier cells, concentrating on the malignant cells, and preserving the healthy cells.  Thus, fewer side effects.  Kind of like the difference between drinking Jose Cuervo, and Patron.  Real agave tequila doesn't produce that nasty "day after"feeling that cheap imitations do.  Don't overdo it, though, even with the good stuff.  A hangover is a hangover, after all.  But a cheap tequila hangover?  Yuck.

In Chemo #1 and #2, I had a dose every 3 weeks for 12 weeks.  This time, I'll be going once a week for 12 weeks--the hope is that the impact on my body will be lessened because of smaller doses, closer together.  You know, to help make the hangover a little more palatable.  

So, the new cocktail of Goldschlager and Patron (thanks for bearing with me...) begins on Thursday at 1pm.  Don't ask me to share--there won't be any left over.  Here's hoping the hangover isn't too bad, because when I'm done with these 12 weeks, there's going to be one hell of a party.

Chemo Cocktails, Part 1--The Early Years

che·mo·ther·a·py (km-thr-p) n.: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease-producing microorganisms or that selectively destroy cancerous tissue. (dictionary.com)

che·mo (kmo) n.:  A toxic intravenous cocktail that kills as many cells in your body as possible without killing the patient. (Christy)

I've become an unwitting student of the recent history of chemotherapy in the treatment of breast cancer.  Really, I'd rather study the history of...just about anything else.  My decennial trips through the world of oncology have given me a unique window into the advances in the systemic treatment of cancer.

Essentially, the goal of chemotherapy is to kill any stray cancer cells that may be throughout my body...the surgery removed the tumors, but there's a possibility that a few microscopic cells are looking for a new place to breed.  In the simplest terms, they look for drugs that kill the malignant cells will killing as few healthy cells as possible.  Inevitably, healthy cells will die, and thus side effects are born. Nausea, hair loss, nerve pain, mouth sores, exhaustion, general malaise, changes in taste buds, thinning nails...these are all caused when the drugs are killing off healthy cells in the pursuit of malignancy.

In 1995, at age 25, I was the "perfect candidate" for a new regimin of "High Dose Chemotherapy."  The theory at the time was to give the maximum dosage that the patient could handle.  It turns out that the research eventually showed that the high dose chemotherapy didn't lead to any better outcomes than traditional dosage levels.

Great, now you tell me.

I was given a typical regimin of Cytoxan and Adriamycin (commonly referred to as AC) but at much higher doses than were typical.  The result was a dangerous drop in my white and red blood cell counts, sepsis that landed me in the hospital for 5 days, and left me feeling pretty darn lousy for about 4 months.  The good news is that it killed everything.  The bad news is that I have had the lifetime maximum of Adriamycin, so one weapon in the arsenal against breast cancer is off the table.  Cytoxan...they can give me as much of that is I want (um, none???)  But the Adriamycin is off the table. Since it made me pee orange for a couple days, I'm not sure how sad that this makes me.

It's been 18 years, but I have a few prominent memories of my first experience with chemo.

1. Losing your hair sucks.  Yeah, no way around that.  It's only hair, and it grows back, but it does come out, it's sad, and it actually hurts as it falls out.  And yes, you do lose ALL of your hair.  And I mean ALL of it.  I cried because I thought it made me look sick, and I didn't want to look sick.  Now I realize that losing your hair is a battle scar of the fight--it is a sign of strength, not of illness.

2. Sepsis is nasty and hospitals are a terrible place to recover from it.  I ended up with an infected blood clot (septic phlebitis for those of you playing the home game) caused by a medi-port (I don't recommend these, for the record...)  After 2 weeks of trying to figure out why I was in excruciating pain with 104 degree fevers, a nurse found staph in my blood stream, had me admitted to the hospital, and put me on an intravenous cocktail of pain killers, blood thinners, and antibiotics.  I spent 5 days on the cancer ward of Fairfax Hospital, sharing a room with a terminal lung cancer patient.  Between my roommates coughing (which broke my heart), her plethora of visitors (who were very kind to me--bringing me ice cream and other treats), the 5am blood draws, and the endless beeping of the machines that were hooked up to me.  I've never been so glad to get back into my own bed in my life after that experience.

3.  Family and friends make it all bearable.  Truly.  You can't get through this one on your own, kids.  You need others--sitting through treatments, keeping you company, helping you keep your brain engaged when it feels like it's turning to mush.  And most importantly, reminding you that there's still a life after cancer treatment--they are living it, and soon, you will be, too.

Diagnosis Day Through the Years

April 28, 1995
Age: 25
Marital Status: Single
Children: Huh?
Location: Post Op Ward of Regional Hospital
Mood: Anesthesia Haze
Reaction: Confusion
Result:  Total Remission.  Cancer will change the direction of my career, the quality of my relationships, and strengthen my ability to cope with adversity.  The story is of someone far too young being diagnoses with an agressive cancer who relied on family and friends to get through each day.

November, 13, 2003
Age: 33
Marital Status: Married <1 year
Children: Twins, 5 weeks old
Location: Living Room, Apartment from Hell™
Mood: Postpartum Fatigue
Reaction: No time for that--time to feed someone...
Result: Total Remission.  Cancer will turn the postpartum twin haze on its side and introduce a new type of exhaustion, will test and strengthen our family life, and will be a bump in the road that we roll past as quickly as possible.  Not a lot of people even know I have cancer because I don't want to draw attention to myself and away from my little ones.  The story should be about the new beautiful family, not about the tragedy of a cancer diagnosis just as my dreams had come true.

January 4, 2013
Age: 42
Marital Status: Married 9.5 years
Children: Twins, 9 years old
Location: Surgeon's Office, Post Op Appointment
Mood: Hopeful
Reaction: Are You Freaking Kidding Me?
Result-To-Be: Total Remission.  My cancer battle will once again change my life and that of my family and friends.  Our focus will be on health, mutual support, laughter, and humor.  The story will be lived out loud, and will be one of turning fear into glee and weakness into strength.  Instead of hiding behind fear, I will allow my journey to bring out the best in everyone around me.

Diagnosis #3

"Are You Kidding ME?"

My surgeon had not had a chance to review my pathology report before my post-op visit.  Surgery was about 10 days before Christmas, and with all of the holiday madness, my report hadn't come in until just prior to my appointment.  She knowingly scanned the pages of the report, reading the relevant information to my husband and me with a lilt of disappointment and surprise in her voice:

"There was a little something in the node."

"You had TWO tumors--1.5 centimeters and 2.5 centimeters."

"No hormone receptors...just like the others."

"Your HER2 is 2+...where is your FISH test...there should be a FISH test here..."

This was not the report anyone in the room was expecting.  The mastectomy was supposed to be mostly prophylactic--in response to a small lump that seemed to have some precancerous cells and a BRCA2 positive result a few weeks before.  So, "Are you kidding me?" were the only words I could find for several minutes.

THREE times.  I'm going to be a three time breast cancer survivor.

The first time, I was 25 years old.  I was young, scared, and had lousy insurance with a $25,000 lifetime cap.  My parents propped me up emotionally and financially throughout a frightening ordeal.

The second time, I was 33 years old.  I was a relative newlywed and had newborn twins.  My husband and I got through every day, a little too weary to process the situation, muddling through the mire of cancer treatments.

This time, I'm 42 years old.  My husband and I have been married for 10 years, have two smart and sweet third graders, and an amazingly supportive group of family, neighbors, and friends.  We are going to own cancer this time.  Family, friends, love, and laughter will outshine anger, fear, tears and frustration.

Christy 3, Cancer 0.