Tactical Retreat

I know this may come as a shocker - and I'm hoping the sarcasm comes through here - for all my talk about "battles" and "war" I have absolutely zero military experience.  Zilch.  Zip. Nada.

In fact, the closest I've come to any sort of tactical planning was a connect-four marathon with a certain uncle who systematically allowed me to think I was winning before eventually crushing my very soul.  This event occurred about ten years ago (*note:  I was not a child) and to this day I can't look at that faded blue and yellow box without narrowing my eyes.

What could possibly go wrong?

But even if we had a rematch, I know I would lose again - because my instincts are about as calculated as a 1950's Walt Disney heroine.  (Yes, I would love a shiny red apple - so thoughtful of you to offer. CONNECT FOUR AGAIN?!? - Damn you Uncle Craig!)

This over-confident naivety manifests itself in other aspects of my life as well - specifically To-Do lists.  Because of this, before we moved to Coeur d' Alene, I chose to work two jobs- as a full time nurse and part time journalist (more than 60 hours each week) in addition to being a mother and wife.  I organized food drives and volunteered - accepting and taking on more shiny red apples opportunities than I could possibly manage.  In short - I'm not fabulous with finding balance in life.

But I'm learning.

I say that as though I have any choice in the matter.  The simple truth is - I don't.

Being diagnosed with cancer put a screeching halt to all my "best laid plans".  Writing, nursing, even parenting is often placed on the proverbial back burner while I go through treatment. Cancer has a way of helping to clarify priorities - in a most divisive way. In fact, these days, my to-do list looks something like this:

1. Survive.
2.  Don't vomit.
3.  Sleep through the night.

Cancer also causes you to appreciate health and the moments when you do feel well - in unprecedented fashion.  And even on the really crummy days there are moments - typically mornings - when I don't feel terrible or even tired.  I've learned to savor that time - to snuggle with the kids, enjoy breakfast with my husband or a visit with a friend.  As I've grown stronger over the last few days I've been able to start back into physical therapy, eat enough to gain a couple of pounds and generally find a new - more balanced - daily routine.

And recently in one of my first "tactical" moves of the hunger games - Chris and I decided to schedule a weekend trip to the family cabin before round two of chemo begins this Thursday.

So we packed up the kids and made our way to one of my favorite places in the whole world - a little strip of heaven near Sandpoint, Idaho.  The land - with a small waterfront dock - has been in the Caro family for four generations and it is one of those magical places that Judy Blume novels are based on.  Childhood stories of tipped canoes, bee stings and snipe hunts are often told and re-told around the campfire.  The cabin is a testament to the importance of family - and of the bonding that can occur when people simply choose to show up and spend time together year after year.

This particular weekend was spent with some of our favorite people - Kevin and MaryEllen, Jackie and Todd - and did not disappoint.  Filled with sunshine, sandy beaches, campfire, barbeque and one particularly grueling game of Taboo - I laughed so hard my abs were sore.  And most importantly I forgot for a while that I am still in a fight for my life.

Even in war it's important to take a break once in a while.

 Beautiful North Idaho.  It's easy to relax with views like this.

Sittin' on the dock of the bay - This photo of Chris teaching Maddie to fish was taken a couple of years ago - one of my all time favorites.

 Jackie and Todd hamming it up as they go for a dip off the dock.  They stayed in the water almost the entire weekend.

Hunky husband on a bike ride around the camp ground. 

My lovely sister-in-law Jackie balancing on the dock.

My bestie MaryEllen teaches Loki to fly while Chris watches on.

A weekend at the cabin is synonymous with playing in the water.  This is where every Caro kid for three generations has learned to swim.

Here's one from last year - when I still had hair.  Note the look of concentration. "Don't tip the kids."

Another oldie but goodie - I love that our children can grow up with such wonderful memories.

Everyone's job is tough -  I don't care if you pick up garbage, bag groceries or teach at a middle school for a living.  And though my current job is fighting cancer - I know that even when I find my way back to health, it is essential to continue to balance work with play. I must learn to "just say no" to the occasional shiny apple - no matter how tempting it may be to bite into it.

 Because it turns out - the most important things in life cannot be crossed off a To-Do list.

Chemotherapy and Other Indoor Sports

My first dose of chemotherapy began on July 12th.  And I have to say, the infusion itself wasn't all that bad.  I filled out paperwork and met with my oncologist prior to the infusion.  Then I was brought back to the infusion center and the nurses (who are stellar by the way) accessed my port and gave me Ativan (I told you they are great!).  The infusion center is open and spacious with several treatment chairs all with beautiful views of landscaped grounds and cloth dividers for privacy.  By design the patients remain in sight of nurses at all times. Chris and I had a private room close to the nurses station with a big screen television and a comfy recliner chair with a warmer button (I feel strongly that all chairs everywhere should have this option) and another button that said "massage" but felt more like "shaken baby syndrome" so I opted out of that one.

We were there for about six hours while the chemo meds were given one at a time, allowing for prescribed observation time after each infusion because this was my first time receiving the medications -  the most likely to have a reaction.

AND - nothing happened.

They served us lunch and I had unlimited access to tiny cans of Shasta Ginger Ale - which is a very good thing in my book.  And because I could play the "cancer card", I remained in control of the television remote the entire time.  So we watched Cake Boss and documentaries about genetics.  Fabulous.

Anyway, the day was fairly uneventful - just a little emotional due to the nature of what we were doing.  We went home and whether from relief that it was over or the massive amounts of steroids I was given during treatment, I proceeded to eat my weight in whatever wasn't tied down in the kitchen.  Then I went to bed feeling confident and very very full.

What followed was an onslaught of bizarre, transient, and yet appallingly unpleasant side effects which has led Chris and I to refer to chemo by a new name: The Hunger Games.

(*For those of you who haven't been sitting around the house catching up on popular culture, the Hunger Games is a series of books - now movies - about a political sporting game in which young people are thrust into an arena and forced to fight to the death.  To liven it up and improve television ratings, various traps - flesh eating fog, murderous wasps, acid rain storms etc - are placed by the gamemakers and activated when the players begin to feel in control of their situation. I read these while still taking a lot of narcotics - but even not drugged they are entertaining.)

"I KILL you Can-Suh!"

Post Chemo Day 1-2: The palms of my hands and soles of my feet felt as though they were sliced with a thousand tiny blades -as though I'd been making snowballs out of shards of glass.  My hands were mottled with red and white splotches while the nerve pain made its way through.  It lasted several hours at a time for the first couple days and hasn't reoccurred since.  Nausea was intermittent even with round the clock anti-emetics, though I never vomited.  I napped off and on throughout the days and my joints ached at night.

Post Chemo Day 3-4:  Overwhelming fatigue.  Day 4 I didn't get out of bed until 3:30 pm.  Unable to sit up without gagging due to nausea. 

Post Chemo Day 5-7:  It's a good thing I like our bathroom - because I didn't leave it often. But the fatigue was lessening and nausea more controlled.  Roots of my hair became sensitive then painful causing severe headaches to the extent that I decided to shave it rather than wait around until it fell out on its own.  After shaving my hair the discomfort resolved.

Post Chemo Day 8-Present:  Skin on my face and neck developed a red raised rash that turned into what appears to be a case of acne that would make a Clearasil rep jump for joy.  But because it's not "that type of acne" I can't treat it with special soaps - I just have to wait it out.  Energy level is greatly improved, GI symptoms resolved for the most part.  Occasional nausea at night but nothing severe.  Insomnia.

And today I'm in nadir.  Sounds peaceful doesn't it?  Like a tropical island with white sandy beaches - perhaps a cabana boy serving up ice cold mojitos.

It's not.  Remember - we're still in the Hunger Games. 

Nadir is the period of time after receiving chemotherapy when your immune system is at its weakest, usually about 10 days out.  Because I am young and healthy going into this battle, round 1 of chemo poses less of a threat during nadir - but I haven't escaped without side effects.  My mouth, throat and all the other mucus membranes in my body including my stomach and urethra are scattered with sores making it difficult to eat and terribly painful to pee.  And because even a cold or infection could pose a threat while my body's natural defenses are weakened, we've developed a "no shoe" policy in the house, have hand sanitizer dispensers on every counter and I'm taking antibiotics again to ensure I am not developing a bladder infection.  

 Basically, my body has been attempting to rid itself - by any means possible - of the poison that was pumped into it. It's doing its job to try to protect me - but the chemo is stronger. And, because the chemo IS the cure - we will keep it up until every last cancer cell is obliterated. (Boo Yah!)

Which means that I may have to invest in interesting bathroom art and load more books on the kindle because I have a sneaking suspicion it's not going to get much easier in the future. But it also means that I now know without a shadow of a doubt that even though this hasn't been (*Warning: Massive Understatement to Occur) the most enjoyable experience - I can do it.  I've learned that I'm strong enough to get through this.  And that is a very important lesson to learn.  One dose down - five to go.

If I were a better person this wouldn't make me laugh.

And on the up side, with all this forced bed rest, I've been able to catch up on reading - more books than I've found time for in ten years!  I've also discovered countless jewels on the internet such as useless trivia and pictures of cats that look like Hitler. 

According to my oncologist, once the nadir symptoms clear up I should be through the worst of the symptoms and start to feel better again.  And hopefully the gamemakers won't become bored and inflict some new form of torture before round 2 begins the first week of August.

But with the Hunger Games, you just never know.

Dirty Little Secret

I'm going to let you all in on something we, in the medical field - and American culture as a whole, do not like to talk about very often:

Even with the best possible medical care - diagnostic tests, expensive medications, high-tech surgeries and the latest and greatest in whatever science has to offer - all we can ever do is put people in the best possible position to heal themselves.

Here's lookin' at you, Paula Deen.

As a culture, we are constantly looking for a magic bullet when it comes to our health.  We embrace the Paula Deen fantasy of a pill that makes us lose weight and stave off diabetes - all without an ounce of effort. We lead high-stress lives, eat fast food, refuse to give up (insert favorite vice here) and then when our health inevitably fails - we look to medical science to "fix" us.

 Preferably by prescribing another very low cost pill which works immediately, yet has no risk or side effect whatsoever.

 And, because most of us in the medical field tend to be "fixer" personalities, we play along - mostly because we like to believe that we have more control of the situation than we actually do.  We give medications, tend wounds, schedule surgeries, run labs and run about - all the while trying to avoid the truth:

We can't "fix" anyone.

At the very best, all we can be is a strong supporting staff.

My faith in my own body was shaken when I was diagnosed with cancer. I had done everything that I was "supposed to do" - never a smoker, not obese, had children before I was 30 and breast fed both of them.  In fact, by the books, my only risk factors for developing breast cancer were:

1.  Being female
2.  Occasionally drinking wine (but hey I'm a nurse and it's not like I'm pouring it on my cheerios in the morning!)
3.  And yes (because this is usually the first thing people ask me after saying "I'm sorry to hear that"), I do have a family history of cancer- though not significantly the mammary varietal. 

But despite all this, I was diagnosed with cancer. (And I don't mean to be Debbie Downer here, but chances are the majority of you will too - at some point in your lives.)  Truth is, none of us are really "safe" from having some catastrophic event occur, cancer or otherwise.  But, I do believe attitude does matter when it comes to overcoming it.

Being a participant counts - and not just for an end-of-year ribbon from those gym class relay races (just me, huh?).

I can't tell you I subscribe to any of the myriad philosophies floating around (and there are plenty of them out there) which state some version of "chemotherapy is poisonous (it is), doctors are trying to kill you (they're not - trust me.  Their malpractice insurance would be through the ROOF) and there is a proven cure that they don't want you to know about if only you do _____ (Insert bizarre diet/bowel protocol/life philosophy here).

Sorry.  Not buying it. There is a reason cancer survival rates have improved dramatically over the last 20 years and if I had to bet on it, my money is going to be on improved science and early detection - not a pure alkaline diet and ritualistic cleanse (whatever that means).  I'm not saying there aren't exceptions to the rule. I'm quite certain there are.  I just choose not to gamble my life on it.  To each his own (and with a subject as emotional as cancer, there are as many "his own's" as there are people touched by the disease).

However, I feel just as strongly that it is important to take an active role in ones own health and healing.  It is not my doctors responsibility to heal me - though they play an integral role.  We're in this together.  And part of that means being realistic about what I am or not doing right in order to help my body along in this process.  Am I taking in as much fruit, vegetables and water that I should? Getting the exercise I need? Sleeping as much as I should? Using sunscreen every time I walk outside?

Honest?

Probably not.

So, how am I any different than the patients I often grow frustrated with, who request back or knee surgeries when they really need to lose weight, are hospitalized for a heart attack or uncontrolled diabetes whose family members bring them hamburgers or milkshakes because "It's their favorite"?  Or even the COPD patient who sneaks downstairs for a smoke - while still attached to an oxygen tank?!

I'm not.  We all make life choices - and like it or not they eventually catch up to us.  And yes, I know genetics are a factor.  But there is also a great deal we can all do to even the deck (in my family this is labeled as "acceptable cheating protocol" when playing cards - but I think it applies here too).

One of the beautiful aspects about cancer is that it allows you to reflect on - and make necessary life changes.  Forces you to rather - your life depends on it.  And maybe it's not technically cheating - but here are a few of the things our family has decided to do to help even our odds against cancer:

*  The generous people from Community Roots - an amazing Coeur d' Alene based non-profit organization committed to helping people obtain affordable locally grown organic produce - has offered to sponsor our family this year. This means that once a week we will receive a box of seasonal produce - all the way into October. It also means I'm going to have to figure out how to eat kale and swiss chard so if you have any great recipes, throw em at me!   (http://kealliance.org/community-roots/ - seriously, if you don't know about them already, check it out.)

*Sunscreen is now purchased in the "value pack".

* And in a total leap of faith, I've committed to going paddle boarding with my friend Kym Murdock who owns Coeur d' Alene Paddleboard Company at 512 E. Sherman Ave.  Kym is as easygoing as she is capable with a paddle - or a pair of heelies for that matter (just ask her!).  But, due to my own coordination skills rivaling that of Liz Lemon (from 30 Rock - I'm also trying to cut back on Netflix) she will have her work cut out for her in order to teach me how to stay upright on a board - heck, rumor has it we might even do a little yoga.  I'll let you know how it goes in a couple of weeks - once I'm officially "cleared" by my surgeon.  Her website is CdaPaddleboard.com if you'd like to come join us.

There you have it.  Cancer changes everything - but it doesn't all have to be bad.  I'm actually excited about the changes we are making in our lives.  And as absurd as it may sound - It probably wouldn't have happened BC (before cancer). But hopefully you won't need to wait for your own diagnosis to make the changes you've been putting off.  Today is a good day - trust me.

So, in short, thank you to all the scientists and chemists out there who are developing new technology and ways of helping my body fight the good fight.  And to the doctors who spend countless hours reading over boring medical journals and attending tedious conferences to educate themselves on best practice - it is not unappreciated.  I know there are no magic pills out there, as much as I'd love to take one (preferably a very low cost pill which works immediately yet has no risk or side effect whatsoever).  But I am thankful for "better living through chemistry" - even if it means going through something as miserable as chemotherapy.

And I promise to do my part to make sure we win this battle, together. 

Chemo Teaching

So, as it turns out, pumping a toxin into your body with the sole intent of killing every cell possible while somehow remaining alive - is pretty scary.   

Go figure, right?

I mean, it's not as though I'm not familiar with the concept.  I am. In fact, I've administered chemo to many patients, cared for them through bad reactions and post chemo complications.  I've read the books, received the training and know the statistics. 

But I don't know if you can ever really be prepared when it's you in that chair instead of them. 

The chemo regimen that I will be receiving is CTH which stands for the three drugs I will be receiving:  Carboplatin, Taxotere and Herceptin.  I will receive one 4-6 hour IV infusion every three weeks for 18 weeks. After that I will continue to receive Herceptin alone once every three weeks for a total of one year. This is the medical equivalent of "Shock and Awe" - it's also a standard regimen for HER2 + tumors which tend to be more aggressive and have a high recurrence rate.  

Without getting too "science-y" on you, cancer cells multiply more quickly than normal body cells and each of these drugs uses a different mechanism to attack rapidly dividing cells.  Unfortunately there are other cells - such as hair - which divide rapidly as well and are casualties in the attack.  The idea is that there may be renegade cancer cells that may have made a run for it and are floating around in my body undetected and just waiting to attack. (A little like terrorists except they really do have weapons of mass destruction - at least as far as my body is concerned).  This is why, even though I've already had a bilateral mastectomy and several lymph nodes removed (thus physically removing all of the known cancer sites), I still have to go through chemotherapy AND radiation. 

This is sort of how I picture the renegade cancer cells we are attacking with chemo. (Of note, this is what popped up when I googled "terrorist" - which, in the process probably landed me on some sort of watch group.  It's a terrorist inspired hoodie! Really?  Are there people who actually buy these things?  Never mind.  I don't want to know.)

In addition to this chemo regimen I am also participating in a trial study for the test drug Trastuzamab. This is a double blind study so I (and my physician) won't know until years later if I actually received the medication.  But, it's shown great promise in decreasing breast cancer recurrence rates for people who have metastatic disease - and the only way I could even have a chance of receiving it.  This study will test whether Trastuzamab works for people with not as advanced cancer (a group I am happy to be lumped into).  Trastuzamab works in a similar fashion as Herceptin, has similar side effects and will be administered for the same length of time.  And, even if I don't end up receiving the drug, if it means I can help with the study - and possibly increase someone's odds in the future- I am happy to do so.

The first couple of days after chemo infusion I will probably feel pretty crummy - with flu-like symptoms - and the most dangerous time period will be about 10 days later when my immune system takes the biggest hit. By the third week I will start to feel a little better - and then it starts over again.  Each round I will probably feel a little weaker, a little more tired because it takes 90 days for red blood cells (the oxygen carrying component of the blood) to reproduce and we will be killing them off faster than my body can reproduce them - so I'll be anemic. 

And then there are the side effects.

Besides the basics - nausea, vomiting, fatigue, hair loss, mouth sores and low blood counts - here were a few of my personal favorites:

I may have nail "changes".  Toenails and fingernails may become discolored and fall off.  They "generally" grow back.

I will probably have some degree of fluid retention and swelling of the ankles or abdomen.

I may have peripheral neuropathy - numbness and tingling in my extremities and difficulty walking. Ototoxicity (hearing loss), Nephrotoxicity (kidney failure) are also risks.

There is also enough risk of heart failure/damage that I am being monitored closely by Echo and EKG's.

Ok.  I am fully aware that everything - and I do mean EVERYTHING - has side effects.  Read the insert of a standard bottle of multivitamins and you will find side effects ranging from nausea to anaphylaxis.  But this is an entirely different animal.  To agree to treatment I not only had to have a specific "chemo training" session but also sign a form which basically read "THOU SHALL NOT BECOME PREGNANT" as well as a waiver which stated my understanding of the gravity of the treatment and the risks involved. There was also something about there being no guarantee this will work.

Included in the training session was a laundry list of how to keep my family and others safe around me while I receive chemo - double flush toilets, wash my clothing separately, don't let anyone in contact with any of my bodily fluids - no kissing, sharing cups and if I want have sex we have to use a condom (to protect him from me!).

In other words - I'm going to be toxic (and we're not talking bad Brittany Spears songs here).

But here's what I've learned:  There is nothing scarier than the unknown.   With each step along the way - every scan, lab and surgery there has been a terrifying grey area where I just didn't know what I was up against.  Every challenge became easier once I stepped through the threshold and just did it.  I know chemo will be the same.  I may experience every side effect in the book and end up painting the tips of my fingers pink to hide the fact that I just tossed my last nail in the garbage - or I may feel nothing at all and my biggest concern will be which SPF to use on my shiny dome.

Either way, it's time to get started.  Shock and awe, baby.  Shock and awe.

Just a Moment

Long before I ever was diagnosed, there was a facebook post circulating among some of my photographer friends sites that read something along the lines of this:

I am a loving mother who put off taking family photos because I found them to be too expensive but somehow always found money for A. Pedicures B. Hair products C. A new purse.  Then I developed terminal cancer and my nails rotted off and my hair fell out and I'm no longer strong enough to carry my new purse.  If ONLY I spent that money on having family photos taken then I could leave my precious family with memories of me instead of a shriveled corpse.

Here was my response:  Giant eye roll.  And I continued to put off scheduling my own family photos - even though one of my best friends is probably one of the most talented photographers out there. 

And then I got cancer.  Awesome.

Now I don't want to make this one of those cautionary tales where you have to forward this message on to ten of your friends within five minutes or a plague of locusts will immediately inhabit your nether regions.  But if I've learned nothing else from this experience, it's that life is fragile.  It can take your breath away by it's beauty - and it can change in an instant.

Which is why I am telling you from experience:  Book your damn family photos.

Thankfully, my aforementioned bestie Jennifer Borst is all too aware of this phenomenon and on a recent visit she brought along her camera, drug our family to an alley in downtown Coeur d' Alene where we were all celebrating the Fourth of July - and over the next 30 minutes captured something that I will never be able to repay her for. 

Because these pictures are the equivalent of a "ripped-from-a-magazine" swimming suit model taped to your refrigerator mid-February as incentive to gain a bikini-ready body.  These photos are a reminder that there is health and vibrancy, love and laughter in our lives.  And if I am honest, they are also a reminder that even though cancer has taken so much from me - I can still be beautiful and strong.  And someday we will have all this again. 

They are a gift that I will treasure always - and hold on to tightly especially in days to come when I'm sure there will be times when it is hard to remember ever feeling that way.

So thank you Jenny for being my beautiful talented friend and for giving us such a precious gift.  I love you so much.

And for the rest of you - here is a glimpse of some of my favorite photos from our photo session by the lake on one of the last golden days before I start chemo.  This is my family.  They are the reason I am fighting.

(Now go book your own family photos - and don't make me tell you again!)

 

(And because I am well aware that photographers must make a living and that some of you may want to book sessions with her after seeing these - all photos are copyright Jennifer Noel Borst 509-961-0484.)

Weighty Issues

"You look...bonier...than usual," says my Surgeon after careful consideration.  This from a married man who should know better than to mutter such loaded not-quite-compliments to any woman.   But we have a good rapport and I laugh at his choice of words.  "Yes, well the last time I saw you was 10 pounds and two boobs ago," I retort from somewhere within the luminous "one-size-fits-none" gown enveloping my tiny frame.

He was right of course.  And that was before my final surgery nearly three weeks ago, long before I began avoiding scales - afraid of facing numbers now dangerously in the duel-digit range. 

The war I've been waging against the cancer camped out in my body has taken it's toll.  Standing before a mirror, my slight figure brings an audible gasp.  My clothing hangs loosely - not just over my nearly prepubescent profile - but pants, once tight, slip down around my hips.  Collar and hip bones rise to make an appearance, ribs line my scarred chest like a picket fence.  Fresh pink scars lace across my chest and the small bouncy-ball sized lump that is my port rests beneath my skin just above my heart - a reminder of trials to come.

But in spite of all this gazing back at me in my reflection - I can't help but smile.  I am in absolute awe of my body.  In awe that in spite of the barrage of insults it has endured - incisions opened and reopened three times in two months, infection, foreign objects placed, drains inserted and removed - it is healing.  I am amazed that every cell, every system can somehow pull it together and recover.  That life wants to - and will - go on living.

Because, may I also remind you that these are the same cells, the same body that helped to form this cancer in the first place.  And since my diagnosis, I cannot help but feel slightly betrayed by the insidious threat that was quietly nurtured there when the situation clearly called for a "red alert" alarm sequence.

But, to be fair, if we were able to magnify the cells in my right breast by one jillion times I'm pretty sure this is what it would have looked like when the cancer first invaded my body.



I think a little forgiveness is in order on my part.  Sometimes, it doesn't matter how secure you think the enterprise is - evil Kahn can still infiltrate. 

But no matter - the bridge will gain control again soon.

In the mean time, I'm slathering peanut butter on every possible edible surface and washing it all down with a bacon latte. (Don't judge me - bacon latte's are a favorite of Captain Kirk.  And who can argue with that?)