SUP Day

It's become a bit of a tradition, but before each dose of chemotherapy, Chris and I have planned a special day to celebrate just being happy and well.  Whether an impromptu party with friends or a weekend get-a-way, we've managed to take a break from the stress and chaos of battling cancer - at least for a day.  This time we were at the half-way mark (number three of six chemo doses!) and managed to squeeze in a weekend filled with not only an impromptu "Mid-Season Cancer Party" with the besties, but also a blissful day of Stand Up Paddle Boarding on Lake Coeur d' Alene. 

My sweet brother Justin stopped by to share some sun with me on his way home to Seattle from a visit to Montana. Love that guy!

Sanders Beach was hoppin' that day - and for good reason.  I love that we live in such a beautiful place.

Maddie was a little guppy out there!

And Teague was diggin' it too.

I'm up, I'm up!

Heck - we were all up!

Jackie glamming it up as our designated SUP pin-up girl.

And look who decided to finally bare her noggin - in the sun no less!

Coeur d' Alene Mer-people.

Perfect water and my favorite companion.

But even the best days must come to an end sometime.

Hunky Hubby shows off his moves - which include forgetting to turn off the go-pro camera.

Good-bye Sanders Beach!  Hope to see you soon.

* Special shout out to our very good friend Kim at Coeur d' Alene Paddleboard (CdaPaddleboard.com  208.292.4156) at 512 E Sherman - who hooked us up with the boards for the day.  Seriously - if you have not tried SUP yet, you must.  There are plenty of sunny days left this season - so get out there and enjoy them.

Good Stuff for Tough Times

I'm a fairly practical girl. And despite what my husband may tell you about my camping abilities - I like to be prepared (forget to bring sleeping bags one time and you never hear the end of it).  I was also the obnoxious new mom who refused to give birth until every item of the recommended baby layette was safely folded and put away in the nursery.  But when I found myself with a first class ticket to the cancer train - I didn't have a clue how to pack for the trip.

Besides obvious tips such as "purchase a wig or scarf in advance of losing your hair" there's not a lot of information out there on how to get ready for something as life-changing as breast cancer - no layette I've ever run across.  And though, as it turned out, I was probably no better equipped for motherhood by possessing four infant footie pajamas instead of three - there is something to be said for being able to prepare.  So here are a few of the tried-and-trues that have made my life easier these last few months.  Whether for yourself or a friend, I hope you never find the need to refer to this list.  But it doesn't hurt to be prepared - just in case.

 The Can-Suh Layette

Diagnosis

Good luck "procedure panties"- Ok, this one might sound a little weird, but for as long as I've been participating in pap exams I've always felt compelled to somehow dress up for the event.  Thus the origin of "procedure panties".  These are just a little sexier than normal to boost self confidence and ward off bad news.  Oh it works.  It's science.  And they definitely came in handy during the month or so of diagnostic testing.

Mastectomy 

JP drains - evil.  But a necessary evil.

Mastectomy tank - Let's get one thing straight - there is nothing sexy about JP drains.  They are weird, a little ooky, and make you feel like a sea dwelling creature. They are also tricky to maneuver - like juggling a couple of water balloon sling shots (yeah there's a visual for ya).  They also necessitate a brand of apparel I once didn't even realize existed.  Post-mastectomy undergarments such as tank tops, camisoles and even shower belts come equipped with a variety of pockets, hooks and straps designed to master the slippery little bulbs.  They also have slots for "pillow boobs" if you so desire - I didn't.  And though if I had to do it over again I'd probably invest in one of the shower belts (Helpful tip:  you can also clip them to a lanyard around your neck) I couldn't see shelling out 50 bones for something I'd only be wearing for a couple of weeks. I opted for a white cotton number provided by the hospital and it suited me just fine.  

Button up shirts - This is another must to stock up on for the post-mastectomy recovery period.  You will need a couple of shirts and pajama tops maybe a size or so larger than normal so as to accommodate for the JP tank top.  Think soft, cotton and nothing that you have to slip over your head - because it's not going to happen for a while.

Chemotherapy

Altoids wintergreen mints - Chemotherapy caused the majority of my taste buds to go on an undetermined hiatus - replacing them with the alluring flavor combination of tinfoil, dish soap and graphite pencil. Thankfully these little mints pack a punch strong enough to get rid of the weird metallic aftertaste.  Kudos to you, Altoids!

Eucerin calming cream - Chemo makes skin turn three shades of dry and this stuff is about as close to a miracle cure as I've ever found.  Seriously fabulous.  Use as moisturizer, make-up remover or just to soothe what ails ya.

A really comfy favorite shirt might earn you a nap if you're lucky.

Favorite shirt - This runs along the same vein as "procedure panties" except worn during chemotherapy treatments.  My current shirt d' jour happens to be a purple Doma Coffee tee made of the softest cotton imaginable.  But because it can be a little chilly to sit for hours on end receiving refrigerated IV medications, I sometimes alternate between that and my fav Buddha shirt, a pair of yoga pants and fuzzy socks.  The take home message being you should wear comfy clothes for treatments - and be sure to consider layers.  Trust me -  you'll thank me later.

Dove Body Wash - As I may have mentioned, chemotherapy does weird things to your skin.  Mostly it just dries it out but it also cause skin to become much more sensitive or prone to break outs.  And of course there is that pesky hair loss.  My hair fell out about three weeks after my first dose which is also about the time I discovered Dove body wash.  It's hydrating enough to combat dry, sensitive skin - even on my newly naked chrome dome.  And at the risk of sounding like an infomercial it's also PH balanced.  I wouldn't use anything else - and I'd like to think my skin thanks me for it. 

Burt's Bees lip balm - Lips get dry too so be sure to stock up on your favorite lip balm.  There are plenty of brands to choose from, but to really soothe sweet lips - try Burt's Bees lip balm.  You can't go wrong with Burt's Bees but my personal favorite is pink grapefruit.  It's citrus-y, fresh and even coordinates with that whole "breast cancer chic" color scheme.  What's not to love?


General

Kindle Fire - I happen to be a strong supporter of print media.  I love the feel of flipping through pages of a book or magazine and my home is filled with shelves stacked with literature collected over the years.  So imagine my surprise when the new literary love of my life happened to be a Kindle my husband bought for me before going into surgery. Filled with back-lit digital books whose pages can be turned with the tap of a fingertip, that thing has been my constant companion during long sleepless nights.  And because you can also access internet, it has also kept me connected to all of you (as well as updated about Hollywood gossip- which weirdly makes me feel better about my own life).  So even though I'm not ready to shelve my "real" books anytime soon, I've warmed up to electronic media too - especially in times like these!

Juicer - We were recently generously gifted with a Breville Juicer.  And while (full disclosure) I probably would have never ponied up for yet-another-appliance-to-take-up-precious-counter-space,  I am so thankful for it!  With defunct taste buds and a queasy stomach, I've had a difficult time powering down fibrous fruits and veggies that my body desperately needs.  But with a juicer I can easily drink a mug of kale, celery, apples, carrot, lemon, ginger - you name it.  I feel healthier, hydrated and I've even got the kids hooked on the stuff. 



So, that's a few of the products that I think are worth the money - and have helped to ease my road so far.  I'll be sure to keep adding to the list as I discover new "gems".  And for all you warriors who have come before me - What helped you along? 

Killer Cooties

I'm just gonna come right out and say it:  Science is amazing.  Ah. Ma. Zing.  I'm a big proponent, and often wax poetically about the vastly under appreciated efforts of scientists. (I am also a gigantic nerd in case there was any doubt)  Which is why I'm a little embarrassed to admit how deeply I recently doubted the abilities of one particular scientific marvel:  Neupogen.

Let me back up a bit.

About ten days after receiving my last dose of chemotherapy, I (predictably) began to go into nadir - which as you may recall is the time when my immune system is at its lowest.  I'd been through it before and had developed sores in my mouth and ended up taking antibiotics for a bladder infection.  Not fun. But I'd taken it in stride and eventually the symptoms cleared and I got stronger.

But this was different.  Over the weekend I began to spike temperatures of 101 - which isn't terribly high except that any fever is significant when you have a defunct immune system.  My body ached, my lungs felt heavy, I'd developed a cough and it became an effort to even get dressed in the morning.  But worse was the feeling of somehow falling into an abyss - it was the feeling of non-specific "impending doom" that they always warn you about in nursing school. 

Luckily, I have very good doctors who preemptively called in a round of antibiotics without requiring me to go to be seen.  Monday I trekked into the office to have labs drawn.  Turns out there was a reason I was feeling so crummy.  My hematocrit and hemoglobin - (the oxygen carrying components of blood) were low which means that I was a little on the anemic side which could account for the low energy level.  But what earned me a slightly panicked phone call from my nurse was this:  My white blood cells (the part of the blood which fights off infection) had dropped to an abysmally low 1.3.  This was particularly significant because before treatment they were 18 (a little on the high side). Worse, my absolute neutrophils (mature white blood cells) were at 0.1 - this was a number I had seen before - but only by hospitalized patients.  I was neutropenic.  And scared.

I'm not very experienced with knowing what it is like to be really sick.  I've had colds before, the flu of course and once I broke my pinky toe (that hurt like a muther!)  But I've never experienced anything like this and it was eerie to glance over a lab sheet - knowing full well the implications of those numbers - and reading my own name at the top. And the really crazy part about all this is knowing these lab results are all part of the goal of chemotherapy.  Remember, the game plan is to kill off everything we can while still keeping me alive.  Well, we went a leetle too far this time.

Sooo...enter Neupogen.

Because my WBC levels were so low my oncologist prescribed a total of five days worth of neupogen shots in order to boost me up enough to be able to tolerate another round of chemotherapy next week.  The medication works by targeting the bone marrow to produce more white blood cells - sort of speeding along the process that would occur naturally.  The shot itself was small and injected into my abdomen - but within hours it caused the glands in my throat to swell, I developed a low grade fever and my bones ached enough that I was glad I still had some vicodin laying around.

So here's what I did for the next five days:

I avoided the grocery store, farmers market and every public space where unknown strangers could spread their brand of nastiness.

Barley - the worlds best nap partner.

I dolled out hand sanitizer like it was Halloween candy.

I chloroxed every surface in our house.

I chastised my son for initiating the "ten-second-rule" and eating a grape off the floor.

I glared at our fat Labrador while he silently drooled on the carpet.  (To be fair, Barley is also blind so he probably had no idea I was sending him daggers from the couch).

In short, I turned into a neurotic, paranoid mess.

Which was probably unnecessary because in spite of my efforts - I don't live in a bubble.  There is no way to protect yourself from every single cootie.
And I needn't have worried anyway.   My oncologist knew what he was talking about.

Yesterday I had my last injection and my lab work was re-drawn.  My white blood cells were 22.  So even though it was terrifying to have my labs go down that far - it was also pretty reassuring that I can be brought back again too. And with the next dose I will be given a shot called neulasta - which works similarly to neupogen except it is long lasting - so hopefully I won't drop that low again in the future.

But for now I'm back on target for chemotherapy this Thursday - and finally starting to feel a little better.

Hooray for Science! 

 

Chemo Round II: Even Optimists get the Blues

Ever heard of famous last words?  Here's a few that have escaped my lips over the last couple of months.

"It's such a tiny little lump - it's probably nothing."  (Yeeaah...I think we all know the end result of that one.)

"Well, at least it couldn't possibly get worse."  (Never, ever say this.  It can ALWAYS get worse.)  

"You know what sounds good right now?  A milkshake!" (To quote the immortal Ron Burgundy - "Milk was a bad idea.")

Solidarity socks courtesy of Terra Sports - Love you guys!

Two weeks ago, after experiencing five blissful days of feeling pretty darn good, I uttered a particularly damaging set of 'famous last words':

"This round of chemotherapy has GOT to be easier than the last one." 

But it wasn't.

In many ways it was more difficult this time around - though not for lack of preparation. But despite a fully stocked mini-pharmacy rivaling that of an octogenarian, plenty of reading material, a freezer full of ready-made meals and an aggressively optimistic outlook - this round of chemotherapy kicked my butt.

It's not as though the symptoms were new and exciting.  It was all there, just in a little different order than the first time - numb hands and feet, nausea, long nights of vomiting and diarrhea where everything I attempted to eat literally went right through me, painful achy joints and overwhelming fatigue.  It's hard to explain the particular brand of fatigue that accompanies chemo - beyond feeling as though a nap would be lovely, this fatigue is more along the lines of a phone "powering off" when the battery goes dead.  There is no question of whether or not you should go to sleep - it is compulsory, beyond any will to do otherwise.

These symptoms, while pretty miserable, should have been old hat for me.  But for maybe the first time since receiving my diagnosis - I found myself feeling utterly devastated.  And at first I didn't know why.

But here's the deal with cancer:  It's a little like standing waist deep in the ocean.  When a wave comes and knocks you over - you can easily brush yourself off and stand up again.  But then another wave comes, and another, and another - and each time it becomes a little more difficult to stand up again.

With this round of chemo, it was apparent that the experience is not going to ease up any time in the near future.  And suddenly the vast ocean of upcoming treatments - with their accompanying side effects and dangers - stretched ominously in front of me. I'd lost my hair, my breasts, my sense of smell and taste. I'd lost a sense of self - who I believed myself to be before experiencing cancer.  I'd lost precious time with my family - time I would never be able to get back.  I wouldn't be able to work through the treatments as I'd planned and I was sicker than I'd ever anticipated I would be.  As much as I'd assured myself that my youth, overall health and a positive attitude would ease my trials, it was now clear that overcoming this cancer is going to be a battle through and through.  And I'm only two rounds in.

Two months in and I was so tired - how would I ever find the strength to keep going?  How has anyone ever found the strength to undergo such an ordeal?  I would be the worst P.O.W. ever - two months of torture and I was ready to give up every national security secret I knew. Thankfully the powers that be don't let me in on much.

And then something happened that snapped me out of my funk:  Things got worse.  Two days ago, my employer called to notify me that due to company policy, once I go on long term disability I will no longer be employed.  Which also means no health benefits as of the end of August. This was something I knew was coming eventually - but had expected more warning time and the reality of it was jarring.

Unfortunately, one of the cold, hard facts about cancer is that the physical, fight-for-your-life aspects of dealing with the disease is only part of the battle.  Cancer care finances - the copays and bills accrued even WITH health insurance are crippling.  And now our family must find a way to not only pay for the bills already piled high but somehow secure a new insurance plan - all in the midst of undergoing treatment.  (Cue hysterical, manic laughter). 

Yes, it's ironic that in our great country a health care worker must struggle to receive health care.  But this is our system.  This is what happens.  I wish my case were an isolated incidence, but it happens all the time. As it stands, I have to find a way to save my own life - so I can go back to saving others. 

So, as of today, I'm not exactly sure what is ahead of us in the vast oncological sea - physically, emotionally or financially.  But here's what I'm learning:  I have to stop fighting the ocean.  The ocean will always win. 

The only way I'm going to be able to survive this is to stop struggling to stand each time a wave knocks me down - and learn to float.  We will find a way to navigate to medical insurance, our bills will be paid - somehow.  I may not have a detailed plan accounting for each hardship we will face in the future and how we will overcome it (as much as I would love to have one) - but I can be present in the moment.

And at this moment, life is under control.  There is a roof over our heads, food in our stomachs and another chemo treatment scheduled for Thursday.  The rest will just have to work itself out.