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the whipped cream conundrum

"would you like whipped cream with that? hell yeah!"

I’m Just Like Everyone Else

People keep asking me, “When’s your next blog post coming out?” “Talk to my agent,” I tell them.  But seriously…

I feel a tremendous amount of pride and gratitude that people want to read what I write, but I have a sense of dread in the pit of my stomach every time I hit the publish button.  Doubts swirl through my mind – will they be thinking, “Here she goes again!  More of her cancer ‘conundrum’ and cutesy thoughts on sprinkles.”  I suppose most writers feel this way; they wonder if what they are saying is relevant and how is something that is so personal to them going to be received in the world (I wonder if my students think this when they turn in a writing assignment?  I’ll have to ask.).  Admittedly, I am my own toughest critic and I think more about the reader who doesn’t care and wonder why, than the reader who does care and write for them.  I assume if you’re still reading this, you care, so I write this for you.

Last week I had the flu.  Everyone gets the flu; it’s a normal human experience, a miserable one, but normal.  I work at a boarding school, which means I live in a petri dish of disease in the middle of winter, so it’s expected that one would contract whatever nuisance is making its way around campus.  But for me, these ordinary ailments can be far from normal in my world.

First, the symptoms begin and my mind races:  Why do I feel more tired than normal?  Are my blood counts off?  Do I need a transfusion?  Oh, no is this another blood clot?  What do I do with Sadie?  Another trip to the emergency room with a never ending hospital stay?  I suppose the food isn’t that inedible…

Second, I wake up in cold sweats, the thermometer rises and a call to the doctor is placed.  Yes, you must go to the ER – “Make sure you tell them you’re on chemo,” the nurse tells me.  Well, I’m not exactly on chemo, but this way, you actually get a space separate from the general population because they assume your immune system is compromised.  (Note 1:  My immune system will always be compromised since I received a new one in 2012.  Note 2:  A separate space is valuable real estate at the Mass General Hospital Emergency Room and I will not hesitate to pull the chemo card!)  After pokes and swabs and x-rays, they send me home with some Tamiflu and instructions for rest.  That’s it?  No transfusion?  No scan?  No admittance to Phillips 21 with a view of the Charles?  You’re just sending me home?  What’s going on here?  Aren’t you worried?  “Wait it out,” is what they tell me.  Wait it out?

So, I wait it out.  Sleep…fluids…Tylenol…repeat as necessary.  I feel trapped and helpless – a very familiar feeling.  I start to get flashbacks:  Will I ever leave this room and get back to my big red couch?  Will people think I’m unreliable?   I have so much to do – plan my final exam; do my taxes; prepare for spring break.  Am I really watching the 11th hour of the Today Show AGAIN?!?!?!  Then, as I’m rolling my eyes at Kathie Lee, I start to come back to life and realize that this is normal.  People get the flu, they suffer through it and come out on the other side.

I have been trapped on a medical merry-go-round for the last six years that has never seemed to stop.  I forgot that I can get sick and not be SICK.  Every cough does not equal cancer and feeling extra fatigue does not mean a relapse.  Do I have to take extra precautions?  Yes.  Will my medical dream team overreact from time to time?  Yes.  But, at the end of the day, I can just be like everyone else and get the flu.  The flu sucks, but feeling like a normal person certainly doesn’t.

 

 

In Other News…

The Conundrum has made it to the radio!  This afternoon,  I’ll be on the WBUR 90.9, Boston’s NPR station, on All Things Considered at 4:00 pm (you can listen live at http://www.wbur.org). I had the opportunity to share my story for a special series – This Moment in Cancer. I will have a more specific time later in the day (depending on other news of the day!). I will also post a link to the story after it airs.

http://www.wbur.org/all-things-considered

 

It’s Been a Heck of a Year

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Sadie ponders 2016 at Popham.

It’s been a heck of a year…it seems the general zeitgeist these days is to say goodbye to a long and, for many, challenging year and welcome 2017 with new hope. For me, this has been one of the most profound years of my life.  And, while I am happy to ring in a new year, I am equally grateful for the lessons of 2016.

This afternoon, I took Sadie for a walk on the beach.  Through the overcast day, both Sadie and I took the time to reflect on what this year has meant to us.  Sadie’s year was filled with transition and turmoil, but also play and joy.  She wins the prize for resilience in the Geller family – she was often displaced, sometimes cared for by semi-strangers and tasked with being a caregiver, providing comfort to many when most needed.  She’s still learning her boundaries, but she is one kind and loving pup!

As for me, 2016 taught me many lessons, but most importantly, the year taught me about love.  I recall a post I wrote in June –  “Clear Eyes, Full Hearts,  Can’t Lose.”  Tears still come to my eyes when I think about what I was facing in that moment – I felt so alive, but, at the same time, I felt myself fading away.  I was confronting an uncertainty that I was convinced no one could understand.  And, while they probably did not completely comprehend my experience (I’m not sure I even did), they didn’t hesitate to show me how much they cared for me.  My family, my friends and my medical team all had my back.  A dance with Corey, a burger at Wahlburgers (and a hope to run into at least one Wahlberg!) with Ursula, a trip to Nordstrom with Mom, a walk with Sadie, a political talk with Dad, an afternoon with Adam, and many other moments kept me in the game.  Though modern medicine came to the rescue, I am convinced that the love of the people in my life pulled me through.

So, yes, it’s been a heck of a year, but in 2016,  I was brought back to life and, in 2017, I’ll keep on living.

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Whipped Cream AND Sprinkles

Whipped Cream with Rainbow Sprinkles

“Would you like whipped cream and sprinkles?”  Umm…do you even have to ask!?!?  I was asked this joyful question when I ordered one of those fancy frozen drinks at Dunkin’ Donuts (yes, you may be thinking betrayal to the almighty Starbucks, but the Dunk is closer to home and I was short on time).  Of course I said yes, proceeded to slurp the amazing, albeit unhealthy, beverage and started thinking…where are the sprinkles in my life these days?

I’ve had lots of transition over the last few months – both physical and emotional.  I went from the darkest of places to the most joyful.  I went from little hope to miraculous outcomes.  I’ve gone from being housebound to getting up and going to work.  The truth is it’s all exhausting…I’m beat!

However, in the midst of all this turmoil and change, I can’t believe how lucky I am.  This immunotherapy is working it’s magic.  (To learn more about the treatment, you can read this recent New York Times article “Harnessing the Immune System to Fight Cancer.”) I have to keep in mind that this is new medical territory, that I am going to have good days and bad, along with bumps in the road that may not always mesh with my “plans,” but I have to keep going.  I have to think of the sprinkles.

So, here are my sprinkles, listed in no particular order:

  • My amazing parents
  • A job/workplace that I love and is supportive beyond belief
  • Kind, loving and supportive friends who I adore (you know who you are!)
  • Sadie – the sweetest dog I could ask for (in spite of her urge to jump on everyone!)
  • World class doctors and health care professionals
  • Writing
  • Books

What are your sprinkles?

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Hope is the best stimulant of life

You know that feeling when you’re dining at a Chinese restaurant, and the moment comes along when the waiter delivers your check along with a handful of fortune cookies for each member of the party.  Whether you want to eat the cookie or not, you tear open the plastic packaging, crack the cookie and immediately pull out your fortune.  Usually, it’s a disappointment – indeed there are websites with bad fortune cookie quotes.  Sometimes, your fortune is right on point – like today, my fortune could not be more relevant.

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When the last diagnosis came – that the tumor returned – I certainly did not have a lot of hope.  I had a lot of love and joy from others, but I felt defeated and hopeless.  Most treatment options were off the table – no radiation, no surgery, and chemotherapy was a risk.  My medical team was perplexed.  I had some very difficult conversations with my doctors and my family.  I was in excruciating pain and doped up on so many pain meds I could barely communicate.  I couldn’t see the light at the end of the tunnel.  What treatment was on the table?  Where was the hope?

Hope is the best stimulant of life and it came along in the form of a treatment called immunotherapy.  (You may know of this treatment as the one used by former President Jimmy Carter).  But, your oncologist cannot just write a prescription for the drug, as he or she would with chemotherapy.  My oncologist, my champion,  Dr. Don Dizon, had to (a) seek approval from the hospital and (b) find a way to fund the treatment, as it can cost $12,500 per month.  Somehow or other, Dr. Dizon worked his magic and (a) received approval from Mass General and (b) convinced the manufacturer, Merck, to cover the cost.  I like to call it a #merckmiracle.

 

Hope is the best stimulant of life and so are results.  I had heard that immunotherapy can literally “melt” your tumors away, but I found that hard to believe.  I didn’t think it was happening to me…after my second treatment, I was still in pain and the tumor wasn’t going anywhere.  Or so I thought…About a week later, four weeks following my first treatment, the pain finally began to subside and I was feeling less discomfort.  A week later, the doctor examined the tumor and she estimated that the tumor had shrunk at least 30% since the biopsy.  Since then, I have felt no pain.  I am finally hopeful everything is moving in the right direction.

Hope is the best stimulant of life and so are red shoes (you know how I feel about shoes!) On a recent shopping outing, I came across a pair of red Tory Burch flats that I had to have.  Now, it’s the middle of summer and I don’t know when I will need professional dress.  Totally unnecessary, yes, but as I told my mom, they give me hope that soon my life will settle back into a new normal that will require cute red flats!  Cha-ching!

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Hope is the best stimulant of life and having hope brings light into my life.  I have spent a lot of time in the dark, but I am starting to see the light.

 

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