the whipped cream conundrum

Sometimes it’s the small things in my life that seem so big and the big things in my life are no big deal.  Hey, I’m here, right? I often wonder why that is — I can confront life’s biggest challenges, but when it comes to the basics I’m somewhat helpless.  This notion got me thinking about whether I am doing the big things beyond surviving.

Often times, things that seem so insignificant, like watering my plants, feel overwhelming.  I have to go into the kitchen (which I am in countless times a day), get the water bottle filled, and walk around my living room watering my seven plants.  I probably could have completed this task in the time it took to type this sentence, but instead I wait until the plants start to wilt and decide it must be time to suck it up and get them fed. Sometimes the plants come back to life, although I have killed several plants, so I suppose it’s not a successful strategy.

I try to convince myself that my issues with completing small tasks are related to time — I often feel that I’m on borrowed time, so really the time I use to water the plants could be used for something more important.  But, the question essentially becomes, am I doing something important instead?  Usually not.  Instead, I think it’s due to a lack of vision.  Stay with me…

In his commencement address to the University of Texas graduating class, Admiral William McRaven advised the graduates that to accomplish big things, you have to start by making your bed:

If you make your bed every morning you will have accomplished the first task of the day. It will give you a small sense of pride, and it will encourage you to do another task and another and another. By the end of the day, that one task completed will have turned into many tasks completed. Making your bed will also reinforce the fact that little things in life matter.

If you can’t do the little things right, you will never be able to do the big things right. 

So if you want to change the world, start off by making your bed.

I keep hearing that phrase run through my head —  If you can’t do the little things right, you will never be able to do the big things right — because I want to do big things.  Not Greta -sized things, but working to ensure access to high-quality cancer care for all people, becoming an advocate for cancer patients and research, sharing my story with others who can benefit from my experiences, and writing a book.   I suppose that if I water my plants (and make my bed), my vision of greatness will take one step closer to becoming reality.

When I am overwhelmed by the thought of watering the plants, or making the bed, it is because I have a lack of vision, or, more likely than not, a lack of confidence in my vision.  I can get stuck in the “I don’t have time” mindset or wonder “who would really care anyway.”  There is time and people do care, so if I look at the small things as conduits to my vision, they may seem less tedious and more worthwhile.

Tonight I’ll water the plants, and when I wake up tomorrow, I’ll make my bed.  I’ll take out the trash and clean my car and empty the dishwasher.  I’ll do these little things because I’m ready for the next big thing.

Survivor: a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

As I was struggling to work through some complicated feelings today, someone called me a “survivor.”  It’s a word that people throw around a lot as it relates to those of us affected by cancer.  In fact, the term “cancer survivor” even has its own Wikipedia page – a person with cancer of any type who is still living.

But being a cancer survivor is more than being a person who is alive after a cancer diagnosis.  I am a human being living with the emotional aftermath of the experience.  There’s the post-traumatic stress, the sleepless nights, the unpredictable emotions, and, most of all, the paralyzing fear of hearing that other shoe hit the floor.  That fear is almost indescribable – the butterflies in my stomach every time I wait for my bloodwork to come back; the feeling of dread when I feel pain anywhere in my body; and the panic that runs through my body every time I think that the doctors I trust really can’t tell me how long this will last.

In spite of this emotional volcano just waiting to erupt, I “continue to function and prosper.”  Today,  however, I wondered, “at what expense?”   I do it to protect myself, as well as those around me – if they think I’m ok, they won’t worry and if they don’t worry they won’t ask me difficult questions.  It’s telling the world I got this, when, in reality, I really don’t have it at all.

So, I decided to Google “what is the antonym to survivor.”  Words such as “failure” and  “loser” popped up.  I’d be lying if I said I don’t see myself as those things more often than I’d like to –  it’s easier to see my flaws than my strengths.  But, simply seeing myself that way from time to time does not make me a loser or a failure.  Neither does trying to keep it all together while avoiding the difficult feelings.  It makes me human and does not negate the fact that I am, indeed, a survivor.

Somehow or other, this “analysis” has moved away from seeing myself as a cancer survivor to simply a survivor.  Cancer is only one of the setbacks in my life, although it has been the most major one and the one for which I carry the most emotional baggage.  But, I have come to realize that being a survivor, be it cancer or not, doesn’t mean having all my shit together.  That’s just exhausting.  What it does mean is fighting for myself and figuring out what I want out of this precious life.

Going into the infusion unit at Mass General is never easy, even under the best of circumstances.  I know I’m lucky – I go in for a brief period of time to receive a life-saving treatment that causes me very little side effects and prolongs my life.  I feel like a healthy person … actually, I am a healthy person.  But not everyone else is, and especially not most people in the infusion unit on Yawkey 8.  With this truth comes guilt, and it was not until last Friday afternoon that the guilt turned into sadness which turned back into guilt.

I don’t often speak to other patients in the infusion room (it’s a large space with several recliners separated by thin curtains).  People respect one another’s privacy.  But this treatment, I was speaking to my nurse (the amazing Emily E. on the Yawkey 8, if anyone from MGH is reading this!) about her wedding in Maine.  A gentleman hooked up to a bag of chemicals killing his cancer cells bellowed across the way, “Are you from Maine?”  This led into a conversation about his diagnosis, the recent good news he received, and a swapping of cancer war stories.

Suddenly, mid-sentence, my neighbor was interrupted by the patient next to him.  “Be quiet,” the man next door weakly said.  We all looked at each other – my neighbor, his wife, my mom, and I – as we all awkwardly paused.  The four of us began to apologize profusely.  A few minutes later, the man said, “Not everyone is having a good day!”

I walked away wondering, “Where has my empathy gone?”  It was not so long ago that I was sitting in that chair, in pain, wondering whether or not the secret sauce running through my veins was going to work.  It was just slightly longer ago that I was in those chairs and beds being pumped with chemicals that were not working.  It was only a few years ago I was struggling through more than 50 rounds of radiation.  And years before there was the high dose chemo and stem cell transplant.  I seemed to have lost all sense of time and place; I seemed to have forgotten from where I came.

I felt a profound sadness for this patient.  He must have felt so alone, so scared,  and so hopeless.  I can only speculate that he was thinking, “Why not me?” or perhaps, “Why me?”  I know these feelings well.  Not just from his perspective, but from my present perspective.  I often ask “Why me?”  Not why did this happen to me – been there, done that –  but why am I one of the lucky ones.  Why did this miracle drug somehow decide to work it’s magic on my body?  Then I think, “Why not me?”  Why am I not sick, why am I not suffering?  Sadness quickly turns back to guilt.

It’s not survivor’s guilt.  I don’t consider myself a “survivor” (I’m not even sure I like that label) because I continue treatment despite having no evidence of disease and because the medical research is so uncertain that no one really knows how long this will last.  For the moment, I get to be healthy, I get to feel joy, and I get to experience a life not limited by illness.  So, why me?  I’ll never know.  But, next time I’m in the infusion unit, I’ll remember there are those who are asking “why me” under different circumstances.  Not everyone has good days on Yawkey 8, and I can never forget that as I continue on my journey.

I realized something tonight while trying to offer advice to a friend suffering from the common cold … after eight years in and out of hospitals, on and off of drugs, moving from doctor to doctor, the best medical advice I can offer, the cure for all that ails you is … wait for it … a shot of bourbon!  More precisely, a shot of bourbon mixed with hot water and a spoonful of honey.  It’s what many affectionately call a “Hot Toddy.” But it works.  Really.  It works.*

When I get sick, like I was last week with a nasty flu-ish plague, all I want is comfort.  I want to wrap myself in my big, fluffy cardigan sweater, snuggle under the electric blanket with Sadie at my feet, and comfort my soul with a hot bourbon.  This led me to wonder…when the chips are down, where do we find comfort?

For some of us, it’s our “comfort people.” These are the people who see us at our best and see us at our worst, but love us anyway.  These are the people who we can be honest and vulnerable with, these are the “quality” people, not the “quantity” people.  Comfort people can serve many different needs – I have “I’m having a nervous breakdown”  people, as well as “I could use a good laugh” people, or “I need you by my side to have this difficult conversation” people.

Some of us have a “comfort place.”  You may be thinking, “I bet Lisa’s comfort place is somewhere in nature.”  Ummm … no.  While I find the ocean peaceful and love my annual trips to Big Sur, my true, honest to god comfort place is … Target!  I see the bright red bullseye from the road, and know all of my worries will disappear upon entering the mecca of home goods and toiletries and food and clothes and, well, just about everything you could ever ask for.  (Even a Starbucks!)  I go to Target when I’m happy, I go when I’m sad, and I go when I need toilet paper.  It’s just my comfort place.

Some times we believe comfort is a bad word – as in “You need to get out of your comfort zone!”  While I am a firm believer that, to paraphrase Eleanor Roosevelt, I grow when I do the things I think I cannot do (and that is what I hope I teach to my students), there are times in one’s life where comfort is not only ok, but necessary.  For example, my mother still goes with me to every single doctor’s appointment.  Could I go alone?  Yes.  But she has been with me every step of the way and makes me feel safe in the scary world of medicine.

Some of us find comfort in unproductive ways like food (guilty!) and shopping (guilty!).  Some of us find comfort in burying ourselves in work (sometimes guilty), or some even find comfort in exercise (so not guilty!).  These days, for me, I find comfort in family and friends and big red box stores.  Oh, and bourbon!

*A couple of notes…

This blog post should not be interpreted as an endorsement for the use of alcohol to make all of our problems go away, everyone has their own vices and for me it’s bourbon in moderation.  

For all the teetotalers out there – a good vanilla black tea or chamomile tea works just as well.  Don’t forget the honey!*

As I sat down to write on this sunny but cold “spring” afternoon in Maine, a favorite song of mine popped up on Pandora – Eric Clapton’s “Running on Faith” .  As I listen to his words (“Lately I’ve been running on faith, what else can a poor boy do?“), I feel like Clapton is speaking to me.  After all, I am running on faith – faith and love are what keep me going.

Two years ago at this time, I started to fade away.  There was no more modern medicine could do for me.  My body was giving up.  I experienced pain that not even the most powerful of opioids could control.  I talked about where I wanted to be buried; I asked my parents to care for Sadie; and I prepared myself for the worst.  But as I did those things, I also I sought second and third opinions, and I planned trips to the best cancer centers in New York and Texas to see experts.  I implored my doctors to find something new.  I knew there would be an answer.  I believed in something bigger than myself.   I had faith.

I also had love.  As Clapton sings later in the song, “When love comes over you, all your dreams will come true.”  While I think Clapton is singing about romantic love, I am talking about the kind of love that comes from letting others into my life.  I started to break down some of my defenses that I worked so hard to create when I was a “healthy” person.  I felt what happens when you honestly let people in – I felt the faith of others.

Faith and love continue to be constants in my life.  I am now kept alive by a drug which no one can say for sure will keep me alive until the gray hair appears on my head.  There is no scientific certainty.  “Well,” the doctors tell me, “we have no idea how long this will last.”  It doesn’t exactly instill confidence that I will live to resemble one of the Golden Girls.

I’m often asked what it is like to live with this uncertainty – a foot in the world of living and a foot in the world of facing mortality at a young age.  I never quite know how to answer, because I just do it; I live my life as if I’m no different from a healthy person with the exception of being injected with a secret sauce every three weeks.  But when I heard Clapton’s voice this afternoon, I realize that faith keeps me from giving in to the uncertainty, from allowing the uncertainty to control or paralyze me.

I still feel sorry for myself sometimes, and I still build walls to keep people out and avoid vulnerability like the plague.  I wonder, like my doctors do, how long this will all last.  But, I keep running on faith.  What else can a poor girl do?