Cancer and Countdowns

I have never been one to count-down days unless it is to celebrate something very special or go on a vacation.  I have been the kind of person that is fairly comfortable with change whether it be the end of something or the start of something new.  Life continue to move on even if I count-down the days, months,  or years.  What I try very hard to do is to live in the moment.  I focus hard on the job at hand, hoping that my presence in the moment makes it memorable or more real.  Don’t get me wrong, I have goals, I want to have good outcomes for my life, work, personal relationships etc.  I guess I have been a ‘more-about-the-journey’ kind of person rather than a ‘destination-person’, until that one fateful fall day in November 2015.

Imagine you are in a doctor’s office, one you never planned to be in in the first place, as a wet stormy Seattle winter brewing outside the window.

You hear the doctor (surgeon) say,

“It’ll be about a year before we can really say if this has been successful.”

Then he goes on to say,

“It will be at least 12 months until you feel normal again, but it will be a very different normal. You will endure 5.5 weeks of radiation and oral chemo, 8-10 weeks to recover before surgery.  Surgery will take about 5-10 hours with a stay in the hospital for anywhere from 3-10 days. After that you will recover for 2 weeks then start 9 rounds of IV chemo, every other week, which takes about 6-8 hours to deliver in the Swedish Cancer clinic.  You will go home with a pump that delivers chemo for an additional 48 hours and return to the clinic for a disconnect 2 days later.  Barring no infection (HA!, we all know that didn’t happen) you should have another surgery in the early fall and be done with this part of the cancer saga around Thanksgiving 2016.  After that, if all goes well you should estimate about five years of follow-up testing after that until we will be able to say whether or not you are cancer free.”

Holy countdowns Batman. That is a LOT of countdowns to get through.  What are countdowns really?  Why do we rely so heavily on them?  Are they just parameters to use support our eager anticipation of an event? A way to ease the excitement?  Are they guidelines to focus on so that the daunting tasks of everyday turmoil and chaos can be seen in small increments instead of huge overwhelming chunks?  Are they another coping mechanism provided to help navigate the unknown?  Maybe they are all of the above…  And if these countdowns are ways to ease the chaos during a difficult time maybe the journey becomes more of a struggle to stay present in and the focus is placed on the destination.  I feel like this is what has happened at least while dealing with this slog.  All I want is to be at the end, the “new normal” phase.

Needless to say, we are still in the midst of countdowns but are happy to report to be more than halfway through.  With only 1 more IV chemo to go we are starting to feel like there is some ‘normal’ just around the corner.  There is still another surgery and many tests that Kaycee will have to endure, but the bulk of treatment is over, thank God!

As I have played the main caregiver role in this cancer countdown I have had to find some ways to cope with the countdowns. The role of caregiver is a hard one.  B.C. (before cancer) I was happily a caregiver to my children, my students, my husband, my friends.  This is what we do in life, we care for those we love.  I knew my job and how to do it, most of the time and through it all I had the support of Kaycee.  But when Kaycee unwittingly switched roles from partner in all this to patient, my main support system dropped away.  He no longer had the physical or mental stamina to be the active supportive partner that he was (and any of you who know Kaycee already understand he was an equal partner in the life-force that is our family). His only job now was to beat cancer.  Though he will hate that I am saying this, his main role became that of patient, a hard pill for anyone to swallow (pun intended) but especially someone so vital and strong.  I had to figure out how to now add to my job description, nurse to my husband.  It is a hard role to participate in. I don’t mean that I couldn’t or didn’t want to do it but it is hard to distance your heart enough from the patient (your husband) to provide care without emotional attachment that is often necessary.  A clear head was needed.  My heart was so connected to Kaycee, my husband, that I had to find a way to harness my emotions so I could level headedly engage with the job of caring for Kaycee, the patient.

Let me explain better…Often, over the last year I found I was drowning in an emotional storm, unable to see the surface of the water. I was fragile and holding life together with what felt like tissue paper and staples.  To say it was overwhelming seems an understatement. It made all my other chosen life roles; mother, teacher, friend, suffer a bit.  Over the summer, I had 2+ months or about 63 days, to find things that made me feel good again, that had nothing to do with caring for others.  Another countdown, I know.  I realized I had to start caring for myself.  This is a hard thing to admit but, I knew I needed to find a way harness my emotions and get to a place of calm.  I have found a few things that make me happy, feel good in my soul and warm my heart.   I started writing more, taking voice lesson and bought myself a ukulele and am teaching myself to play. These things became my therapy, my self-care program.  Now, whenever I need a shot of soul-strengthening-goodness I head for my computer to write or grab my ukulele.  I countdown the days for my voice lessons and relish each of the 45 minutes spent trying to learn to sing (with abandon).  I feel like I have learned to look for the self-care life raft  before going under the emotional waters.  But I have done so with the support of countdowns.

So through countdowns I am trying to find a balance between the journey and the destination.  Though we are all looking forward to the destination of Kaycee’s cancer journey and the day we can say he is cancer-free, I don’t want to get so lost in the counting-down that I forget to see the moments that are what makes the destination so sweet.  Over the last few days I have seen many people posting pictures of their “babies” going off to college, driving away from the hearts, minds and souls they have cared for all these years. My heart is filled with awe and wonder for both the parents and the kids as they have to learn to find a new way to balance their new journey/destination countdowns.  Our baby is only 2 short years from this same path and I want to enjoy every moment until then.  See what I just did there… in one short sentence countdowns and small moments became entwined.  I guess that is just how it is.

As I write this I am counting down the hours until have students in my room, at the moment less than 48… so I am enjoying the sway of the trees and the dappled sunshine of my backyard. Once school starts life gets even more complicated.  I will need to remember self-care in order to better care for all those I love.  I guess I am coming to realize is that finding the balance in life is what allows us to float in the calming sea. Countdowns are only numbers to guide us to the destination, a way to organize the chaos. Balance is the key to enjoy the moments within the chaos.   Okay, now only 46 hours (yippee)… and so it goes.

-Sarah

Cancer and Baggage

Packing, Over-Packing and Unpacking

Let’s just get this out of the way right now.  We all have baggage.  Don’t try to be the hero and say that you don’t have any, because you do.  Or at least I hope you do.  Baggage doesn’t have to be bad.  Baggage can be amazing.  If packed well baggage can be brilliant.  It can carry just the perfect outfit for the far-away-distant-cousin’s-wedding-that-you-are-being-arm-twisted-to-attend-for-the-sake-of-family-relations.  It can hold the greatest fitting boot, that won’t give you blisters, for the long planned hiking trip that you’ve dreamt about for years.  It can bring forth just the right sweater for the cold weather you never thought you’d encounter on your tropical holiday but packed because you are an over-packer. If packed efficiently baggage can be remarkable.

This type of baggage is something I aspire to.  See I am an over packer.  Just once I would like to pack the essentials; pack only what I needed to successfully complete the trip. I usually end up packing at least 3 pair of shoes too many, more tops than bottoms, extra socks and always have the biggest suitcase.  Over-packed baggage.  But I am going to think of this as being well prepared.  See I am starting to re-frame the negative “she’s got baggage” into the positive, “WOW, look at all the baggage she has!” I think baggage should be seen as life experiences, love stories, people in our life, the good times, the bad times, the hard times and the easy times.  Baggage is filled with memories collected throughout life.  This baggage enables us to share the perfect family anecdote at the far-away-distant-cousin’s-wedding-that-you-are-being-arm-twisted-to-attend-for-the-sake-of-family-relations.  This baggage holds the most comfortable, inspiring memories to ponder as you hike along the trail of the long-time planned adventure.  And over-packed baggage can bring you the warmth of memories from life experiences that you didn’t know you would need on an unexpectedly cold night.

Baggage can and honestly should change over time, otherwise we would be stuck with all the teenage angst baggage of our youth.  This baggage so important at the time but now maybe not as necessary. When un-packed in our youth, though, it was helpful for sharing and comparing what you and your friends were going through: how mean your parent was, that you had to clean your room before going out, who liked who, your first kiss, that mean teacher, etc.  These experiences filled the bag, chock-full for some of us.  However, when baggage gets too full it requires a re-pack.  Some items get discarded in the process. Thus the baggage from our youth looks different than the baggage we now carry (or at least it should?).  Most items got eliminated, well maybe not the first kiss, but other trivial items got removed to make room for current baggage.  But, no matter what the occasion, in the special hidden compartment there are those items that will always be with you no matter where you are going.  This is the baggage that shapes and molds you, it is your foundation, your bones, your personal structure.

As we get older and wiser our baggage gets richer, fuller.  It becomes more meaningful to a longer-lived life.  We no longer just share and compare baggage.  Hopefully we are listening (really listening) and comforting one another, engaging and supporting each other, experiencing, on a visceral level our baggage as we un-pack and re-pack our items of value and need.

The baggage that you carry is yours and your alone.  What you decide to do with this baggage is an individual one.  Do you decide to hold on to anger and the experiences that caused that anger as they weigh you down?  Or instead, do you learn from a bad situation and instead pack away the lesson learned without the anger attached?  Do you remember what made you laugh so hard with your friends one night, that had tears running down your cheeks? Or do you remember the people on that fun filled evening that you have the privilege to call your friends and the laughter as it echoed through the night? Do you remember the words the doctor spoke as he told you your husband had cancer or do you remember the warmth of your husband’s hand in yours as you turned to each other, unable to speak, and realized you were headed for an extremely hard time?  Which experience do you carry?  Which emotion do you hold on to?

Kaycee had another infection at the end of July, making it number four, ugh!  Another fever, another trip to the ER, another 5-day stay in the hospital, another drain, another week off-schedule for chemo.  You know that drill almost as well as we do at this point.  Something new that occurred with this, the fourth infection (sigh), was that Kaycee had to keep his port accessed and give himself direct IV port antibiotics every day for 10 days.  This antibiotic coupled with another oral anti-biotic, hopefully, has done the job at getting rid of these recurring infections once and for all (finger crossed!). This drain we decided to call The Drain That Must Not Be Named because honestly we were tired of naming the damn things!  This is now another piece of baggage that I get to add to my collection.  I get to choose what part of this experience I want to pack, if any, for the future.  But that is thing with baggage…it is mine, all mine.  I get to pack what I want and carry what I think I need.  What I have to learn is to pack my baggage wisely.

I feel like re-packing my baggage happens daily.  Sometimes, I shove in the harder, scarier, angrier, angst-ier experiences to the bag.  There are days that require this type of baggage.  Other days, there is nothing but the good, happy, loving comfortable memories.  Lately though, I have packed a mixture of baggage.  I am realizing that packing a balance of baggage can be powerful.  There is seemingly always something to draw upon, to find comfort in, to share with others.  Over-packing in this case can be a helpful approach for better dealing with the “cancer-trip” we are on.  I try to look at all my personal baggage and use what I need to support myself, my husband, my girls and my friends.

This means I have to make a very conscious effort to rid myself of the baggage that weighs me down, to eliminate the things that have no meaning or use anymore.  This can be harder than you think.  It’s sort of like the pants that are too tight in the middle and have been for a few years.  You hold on hoping, praying things will go back to how they were.  But I am learning to say, “Lose ‘em!”.  They are not worth it.  Carrying them around only to be a reminder of the waist that was, that you will never have again… this is a waste (pun intended) of energy.  And if by some miracle you do get that waist again? Well then those pants are going to be so out of style that best thing to do will be to go shopping for a new pair.  So, I try to clean up the baggage, often. Keep what is needed, what is helpful, what is meaningful, what shapes and supports my life.

My goal is to continue to become a more efficient packer, though, I realize I will most likely always be an over-packer.  Baggage should be celebrated, shared and evaluated and some discarded.  Let’s remember that everyone has baggage but to not see it as a bad thing.  On the contrary, baggage is quite often extraordinary. And baggage, however well-packed, should take a lifetime to accumulate.

-Sarah