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

Cancer and the Fox Trot

Lately, I have been pondering the dance that is cancer.  It is a bit like a fox trot, a ballroom dance slow-slow-quick-quick-slow-slow-quick-quick.  Somewhat like a rollercoaster up and down, twisting and turning.  Often like a car hijacking out of control and terrifying never knowing what will happen with the next breath, next moment, next day. With every circumstance there is a loss of control, sometimes it is a painful drip that you can see yourself losing but can’t stop no matter how much or how hard you try.  That is the slow-slow of the dance.  Other times this loss of control is as fast as the ground opening up and swallowing you whole, quick-quick. At times you can recall what life was like BC (before cancer) but you have no idea what sort of life will become after. Then there are the even harder periods that leave you confused, frustrated, and scared about the reality of life in the moment. Both require a surrender of control to the unknown that at times can be graceful but most of the time it resembles tripping, falling and bumping into things all along the way.  In other words it looks a bit like learning to dance with two left feet, in a dark room blind-folded after being spun around piñata-style.

Let me explain further, life BC was pretty damn good.  We were a happy family, a comfortable, active, tight knit, social, busy family.  We had our good times and our tough times but really we had it good… I realize this now more than ever.  I think about some of my complaints BC; kid worries, dirty house, laundry, crazy duck neighbors, expenses, work issues, car troubles, too much to do too little time etc. The solutions, though at time bothersome were simple and straight-forward.  I could clean, do the laundry, craft a concerned-citizen email to the city urging them that 20+ farm fowl should not be raised in a neighborhood… all these things I could control with time and a little energy.  We still have those things going on our life (minus the ducks, thank God!) but they no longer seem as important, as big, as dire. I know this sounds so cliché, and I am sorry for that, but life was easier, simpler, more controlled.  Slow-slow.

Like anyone else we still suffer from the standard old daily complaints. The change now is that I see these complaints as things I can count on, something I can somewhat control.  Now, however we have a host of new complaints, all revolving around trying to get Kaycee healthy and cancer free. All out of our control.  We can’t organize our way out of cancer.  We can’t clean the cancer away.  We can’t write the city as a concerned citizen and ask them to address the “cancer-problem” living inside my husband. All of this cancer stuff is out of our control and spinning at a frenetic pace.   The loss of control felt BC vs. DWC (dealing with cancer) seeps slowly under the door.  It is staggering at times and so we have learned to surrender, most of the time to this uncontrollable situation.  We try to right ourselves in the whirling, try to find balance. Quick-quick.

We are learning, or at least beginning a surrender, to help.  This is easier said than done. This requires a figurative leap off a cliff screaming, “I/We can’t do this on our own!”.  The overwhelming support from community, family, and friends is AMAZING.  At times I have a hard time wrapping my brain around it but I now welcome it with open arms. I/we have, over time, surrendered to support though often awkwardly.  Slow-slow.

This cancer fight of Kaycee’s has been a very public one.  This was not so much by choice but more by storm; as he is such an active, tightly woven thread in the fabric of this community… it was a bit unavoidable.  Once the word was out, the lightning speed that troops gathered, took up arms, began the fight with us was incredible.  Quick-quick.

This tremendous outpouring of support has turned an amazing gift, a life raft, during this wicked uncontrollable storm. And now I/we cannot imagine having to brave this storm without it.

Things have changed in the socializing department, too.  We no longer get to answer YES on the evites but hit the MAYBE button and add the cancer clause (**this is the opt-out excuse that covers any not showing up, leaving early or showing up late, to a party due to …yes…cancer). It takes a lot of time to get up and go, at least an hour to an hour and a half, there are no spontaneous adventures but carefully planned and time limited trips.  Our biggest outing happens every other week when we head to Seattle for all-day chemo and blood work that takes 5-7 hours followed 46 hours later by a port disconnect that takes about 5 minutes to do but 3 hours round trip.  This bi-weekly adventure comes with a 5-7day recovery rate which is like hanging out with the worst hung-over person that didn’t touch a drop of alcohol.  Slow-slow.

I have to admit that I am not always very adept at letting go of control.  I find comport in having some order, some routine that I can count on.  To say I have been tested during this new dance routine is an understatement.  I, in fact, had a total Mommy Dearest moment.  Not with the beating of the children with hangers but I totally lost it one day because of hangers.  I was in the laundry room hanging the laundry that needed to dry naturally when the beast came alive and started spewing, “Why couldn’t everyone see that I had a plan for the direction the hangers should face?” and “How come I am the only one who see it as frustrating?” and, “Why can’t they just all do it my way?”… Not graceful at all! It was fast and furious and completely irrational.  Quick-quick.

I left the room and deflated.  What had I just been so mad about?  Was it really the hangers?  Honestly, no.  It was one more thing that I thought I had control over that I didn’t.  And although it is an insignificant thing (hanger direction, I mean come on!) it was something I could count on, something I could control.  After this realization and an apology to my loving husband who was witness to the angry beast I realized that even the good old, regular things can’t be controlled.  Life happens how it is going to happen whether or not we have our hand in the mix, trying to change it, organize it, control it.  The laundry will dry no matter what direction the hangers are facing.  Slow-slow.

I guess this cancer-dance is tricky that way.  Somethings are learned fast, some take time to perfect and some you have to re-learn, often. I definitely have my good performances and my complete flops.  The challenge comes in surrendering to the joy of dancing with cancer.  This the hardest part, the oxymoron.  The prize is finding the balance between. But if I try to remember the steps slow-slow-quick-quick I can work better to finish the performance, and maybe learn some new moves in the process.

Lastly, I want to thank everyone who was able to share the special night at BPA last Friday July 1^st for the Laugh for Life benefit.  The theater was filled with love and joy.  Thank you to all the performers; Mike Derzon and Johnny Bregar, Zach Fluery, and Bridget Young, your beautiful hearts, generous spirits and amazing talents were a gift to all who listened and participated. To Mark Sell thank you for coming all the way from Houston to help produce this event for us. Even though you were flat on your back during the night you organized this night that will not soon be forgotten. To all who continually support our family at the BPA I want to thank you; Alex, Liz, Deirdre and Dominique, this evening was a smooth success because of your efforts, thank you. Furthermore, I want to thank all of the audience members from near and far.  Some of you may know our family well, some may only know us a little bit, some of you may know us better than you ever wanted too, but all of you have demonstrated the gift of love and support through this terrible slog.

AND since I don’t lack the gift of gab so I would like to share one more story with you, if you please.

About two months after Kaycee’s diagnosis I went away for a girlfriend’s birthday weekend, planned months before.  I was terrified to leave but desperately needed to get away.  On the first day, I was on a walk and ran across a statue of a beautiful woman/angel outside the catholic cathedral in LA.  She stopped me in my tracks.  Perched above a corner wall on a busy LA street she seemed to appear a bit out of place. She was hard on the outside intense, dark amazingly gorgeous.  She took my breath away.  She had her hands stretched out reaching up, vulnerable, yet strong.  I snapped only one picture.

Needless to say, I was captivated by her.  I went back to the hotel giddy and shared this beautiful picture with the other women, all new friends to me except the birthday girl. One of my new wise friends said, “She should be your talisman for the weekend, she is telling your to be open, to surrender your control and just receive.”

I thought okay, surrender control…that is all I have but I would try to be open at least for the weekend.  It was a fabulous weekend.

A few weeks later Kaycee, the girls and I went to Hawaii to recover from the first rounds of treatment/surgery and to prepare for the upcoming, intense rounds of IV Chemo.  Kaycee and I walked every morning and on one of our first long morning walks we walked through one of the huge hotels beautifully manicured gardens. Lo and behold there was my woman/angel statue. This time she was a curvier Hawaiian version, with a great butt… but she had the same outstretched hands surrendering to life and receiving all that is given.  No doubt now she was my girl-power guardian-goddess.

When we returned home, I printed a picture of her and have it framed in our bathroom.  Over the last few months I have imagined this woman/angel as a warrior.  She is a touchpoint, an icon, a talisman for me to focus on even in the darkest times.

Learning to surrender control is not easy…  But opening up to receiving the goodness of others, receiving the generosity from all of you, receiving the thoughts, prayers and well-wishes, receiving the financial, culinary, and spiritual support has been an amazing bounty of gifts!

Slow-slow-quick quick.

And so the dance continues…

-Sarah

School’s Out for Summer… Our Step by Step Guide to Summer 2016

It’s been a few weeks since I last updated with news in the Taylor household and I am actually happy to report that nothing much has happened.  School is finally out for ALL of us, I had to go a few more days than Bainbridge (always hard).  Medically speaking, HAL 3.0 did his job and was much nicer than his predecessor, the angry, evil, beast-like drain, HAL 2.0.  This is not to say that HAL 3.0 wasn’t painful, it is just varying degrees of discomfort for Kaycee at this point.  HAL 3.0 is now gone and Kaycee, is again, beginning to walk a little more upright with every step.  One piece of advice that all docs say is that he should try to keep walking every day.  And so, steps are what we are going to try to increase over the next few months, whether they be wee-baby steps, casual every day steps or monumental life-changing steps.

Step one: Summer is not normally a time that we get to relax much, really teachers do work year round just not in the classroom.  Kaycee typically can be seen at Wing Point Pool each day managing staff and ensuring a safe and pleasant poolside experience for 50+ plus hours per week, while also bouncing back up to BHS to work on his AD duties and bar-tending the once in a while gig.  I usually get busy in the yard, the one that is overgrown and lacking months of attention, as well as pick up multiple catering/bar-tending gigs from my sister, become the local taxi service for the family and start the planning and prepping for next year’s group of 3^rd & 4^th grade students. There are sometimes a few short road trips that usually occur, however, we are mostly tied to home over the summers. This summer is going to be a bit different.  It is going to be the first summer since we have been married (19 years now) that neither Kaycee nor I have work beyond our “regular” jobs.  He will not be ever present at Wing Point, a decision that is a hard one but the right one, for this 2016 summer season.  I will not be slinging booze and food at parties and weddings or taking any additional professional development classes. I am sure there will be the occasional trips to school(s) to take care or regular business but for the most part this will be our first summer “off”.  Ever.

Step 2:  Our job this summer is to get Kaycee healthy and cancer-free, no small fete.  Our road trips will be to Swedish for chemo and doc appointments.  We may road trip, if Kaycee feels up to it, to some local cabins generously offered by supportive friends, but for the most part we will be here.  It seems almost daunting…not the cancer part but the free-time part.  The ability to just be, hang, relax, heal.  There is no tight schedule, no shift start/end times, no late night events that leave you physically drained and prune-y from dish washing, no cleaning of deck-side messes.  There is a sense of slowing down that I have yet to grasp.  The break-neck pace of normal existence is about to come to a tortoise-like crawl, or so I imagine, maybe even hope.

There are still many obligations to see to but mostly for our children.  Addison is learning to drive through NK high school so she has to be there for 3 weeks 3-5days a week.  She is working three different jobs: life-guarding at Wing Pint, coxswaining for the Master’s team three mornings a week (4am 2x per week and 6amon Saturdays, crazy and impressive) and dishwashing for my sister, plus the odd babysitting job here and there.  She is definitely learning the importance of hard work and the value of a dollar.  Delaney will be busy in the theater for 5 weeks as the theater school gets underway.  For BPA summer school program, the show this year James and the Giant Peach, Jr.  Delaney will also have voice lessons each week and work at odd jobs taking care of animals/homes for traveling neighbors and babysitting (she is available ever day after 3J).  They are keeping busy…and that is good.  This busyness, for them, is comforting and seems to keep the reality of “cancer-life” manageable.  They have good and bad days, of course, but I have been amazed at the strength and grace with which they have waded through this slog.

Step 3:  What we do have scheduled for this summer are some events that I am thoroughly looking forward too with excitement and gratitude.  The first is a show July 1^st, a fundraiser LAUGH! FOR LIFE being held for Kaycee, at BPA showcasing the musical stylings of the talented Zack Fleury, followed by our good friend Mike Derzon and his bandmate Johnny Bregar.  Headlining the night will be our long-time friend and comically gifted, beautiful Bridget Young.  She will share her laugh-out-loud show for all to enjoy.   All this is made possible by the father daughter tech-team dynamo of Mark and Jordan Sell.  Again, the generosity of individuals and creative community support continues to astound me, every day, in small and much bigger ways.  I can hardly wait.  Continued laughter is much needed on our docket and really is great medicine!

Step 4: Lastly, there are the regular summer events: Rotary Auction, walks on beach, BPA Theater School show (July 28-30), birthday celebrations, visits from friends, and much more.  I am looking forward to it all.  School is out for summer and though there is still hard work to be done we are up to the challenge.  Cheers to a happy, healthy, healing, love and laughter filled summer with friends and family.

 

-Sarah

Remember when…?

Remember when you were pregnant with your first child?  Think back, just a few years ago or way back for many of us.  Remember packing that hospital bag in preparation?  Remember heading to the hospital for multiple doctor appointments, scans, ultra-sounds, bloodwork, and possible false alarms?  Remember when you brought that beautiful warm bundle home for the first time, overwhelmed with emotions and scared at the thought that you have no idea what to do or what you have gotten yourself into?  Remember all the sleepless nights and the fatigue you felt everyday just trying to get the loads of laundry done, house cleaned, bills paid?

Remember all the extras that came with this new life; creams, ointments, diapers, clothing, toys, bottles, etc.  Each of these items filling up your home, overwhelming your emotions, cluttering up your life.  Basically, every day was about finding something that felt comfortable, regular, or routine in a life that looked nothing like the life you knew as normal.  This new “normal” kind-of sucked but was also really great.  You knew it would only be temporary and you had this beautiful new human to care for.  Even if they cried all night making you so sleep deprived you may have walked into the grocery store with no less than spit-up and poop on your shirt (yes, I am speaking from personal experience and just saying, it wasn’t pretty).  All this crazy AND you still were excited for this chapter of your life.  You looked forward to the sleepless nights because they lead to days of napping on the couch with baby.  You enjoyed the naps and diapers, the spit up and laundrybecause you had a little life to watch grow with anticipation of what was to come.

Well, this cancer business is kind of like that…only the complete antithesis.  The little bundle of joy is more like evil spawn.  Although it leaves you feeling much of what you felt with a newborn, there is no joy, no happiness, no excitement of what else there is to come.  Let me explain…

This cancer business does leave you exhausted as both caregiver and patient, though Kaycee’s fatigue is way past anything I am experiencing.  His fatigue and exhaustion is bone numbing, muscle depleting, a complete shut-down of everything.  It is considered it a good day, these days, if he gets in the shower.  Most days are more like a repeating pattern of couch, bed, couch, bed, Chemo,  couch, bed, with the occasional trip to the hospital for a few days to treat infection with a drain tube, couch, bed, Chemo, couch, bed…etc.  The overnight bag you packed for the hospital, yeah, Kaycee has one packed, too.  In fact, as I write this we are sitting in yet another waiting room waiting results of another CT scan and word from the doc about whether or not he will be admitted, again.  His overnight bag, unfortunately doesn’t have a cute little snuggly outfit to bring baby home in though, just his stuff to feel a bit more normal in the hospital.  This new “normal” is anything but normal.  It comes with very bizarre “toys” and ointments, as well as a whole pharmacy of new meds and prescriptions to keep straight.  This normal isn’t exciting.  It is  much like having a newborn terrifying, exhausting, emotionally draining, and a lot of hard work. But without the fun of having a new baby.

In fact, this new “normal” life comes with some of the same symptoms of a newborn life; laundry piling up, dogs ignored… waiting to be walked, kids left on their own as we speed off to the hospital, never-ending doctor visits, and multiple other families/friends making meals for you because there just isn’t enough time in the day to get it done.  This life comes with overwhelming outpouring of love and support from community; friends, family, acquaintances, people we don’t even know all praying for us, sending good juju and thoughts, helping us with yard work, running errands, ferrying kids around, supporting us in their own way, etc., etc., etc. However, what this this life does not come with is the newborn; something to adore, hold, love and watch grow.  This new life now rules our every waking and sleeping moment, it rules our very raw emotions, it rules us… and it is something I despise.  I loathe it.  It grew, unsuspectingly, for God only knows how long, making its presence known through a scan and additional tests, much like a pregnancy.  But make no mistake, there was no joy in this announcement.  This is not a good thing, not a happy thing, not something to celebrate.

This thing, this cancer, has made our house a very quiet place.  There is no regular hum of cheer, laughter.  The normalcy that we had grown comfortable with is gone.  Instead, it is replaced with an often uncomfortable silence or hush because dad/Kaycee/he is sleeping. People don’t stop by quite as frequently, we don’t have any dinner parties, we rarely go out, if ever, going to the grocery store is a big deal and often a social ordeal filled with well-wishes and many questions from the concerned community.

We have learned to enjoy more movie nights.  I have learned to enjoy writing, sharing the good, the bad and the ugly as a sort of thereapy.  We have learned to cherish the moments when we are together as a family of four.  Kaycee is learning that he HAS to slow down.  This is not a mind-over-matter-type of situation.  This is a your-body-needs-you-to-rest- and-will-fight-you-every-step-of-the-way situation.  This new “normal” is teaching us to remember the good times and to look forward to healthier, easier, better times ahead with trepidatious anticipation.

So, although this is nothing like a first pregnancy it does has similarities.  I find comfort remembering that we have already lived through a time when things were hard.  When life seemed to be too much, too overwhelming and too exhausting to handle.  I remember that we got through that together and we will get through this, too.  It will not be easy, it will not happen fast, but I have faith that it will happen.  I have hope that there will come a time in the future where we will sit together, healthy and comfortable, figuring out how to navigate another new “normal” life together and we will look at one another and say, “Remember when…”

 

And now the medical update:

Kaycee was admitted yesterday, after a persistent low-grade fever for four days following Chemo #2.  He had another CT scan that indicating another infection was present.  He will have a drain put in at some point today, 6-1-16, HAL 3.0- the evil spawn (sounds like a horror film).  These drains are excruciatingly painful.  Docs say that the placement of said drain is in the “most painful place” a drain can go, lucky Kaycee.  But this drain is a neccesary evil to stave of any chance of further sepsis.  When he has the drain, Kaycee walks like a 100 year old man, slow, deliberate, agonizing steps.  Chemo will continue uninterrupted with his next session 6-8-16.

 

-Sarah