- Published on
It was the year of convalescence and healing
Depression and frustration
Fingernails falling off one-by-one, losing my eyelashes, nausea, fatigue, hand foot syndrome, thyroiditis, migraines, mood swings, menopause, depression, weight gain, reflux, the hemoglobin goblin, scanxiety and my hair growing back curly
I spent most of the first four months of the year curled up on the couch
Riding out the symptoms, writing, reading, watching, scrolling endlessly through facebook and twitter and instagram
Short walks to the end of the block, to the store if I was feeling really adventurous, wearing that stuffy mask and trying to be patient with strangers who asked “Why are you wearing that?”
Their fear and pitying stare when you reply,
“I’m recovering from cancer.”
By April I could walk to the park
I fell in love with spring in New York
The magnolias and the blossoms and the blue of the sky
We celebrated Aaron’s 30th with games and good food
I started learning to play the piano
I found an incredible mentor through Imerman’s Angels
I signed up for online courses in poetry and songwriting
In May I was depressed and angry
I couldn’t go to camp
I wept and wailed and railed against the unfairness of this stupid disease and its long recovery
It took a month to find a counselor who accepted our insurance and dealt with cancer
I found CancerCare and signed up for their summer young adult survivor support group
I was allowed out into the world
We had our first date in almost a year - we rode the subway to Prospect Park and ate dinner at Purple Yam
My first subway trip to the city on my own was to go to the support group
In June I finally got to go shows again
We saw Ever After at the Paper Mill Playhouse
In the second half of the year, I made up for a year of not seeing anything and saw 44 shows, including the Into the Woods Original Cast Reunion at BAM, On the Town, Spring Awakening, The King and I, and Invisible Thread. I saw the Drama League Gala for Bernadette Peters.
One of my poems was published in StepAway magazine
In July I visited camp
We had cancerversary dinner in Connecticut and marveled at the year that had been
I met Patti LuPone and thanked her for being so lovely
I stayed with my friend in Connecticut and was treated like royalty
In August I started training for the Cancer to 5km
I got a job at BAM
I had an article published on the CancerCare website
I became a member of the New York Public Library
In September I started working for a friend’s business in wedding planning
Aaron and I sailed down the Hudson at sunset
I traveled to Australia for the first time in four and a half years
I dealt with all my crap in storage. I wanted to burn everything I had ever owned (I didn’t. I gave most of it away, bought two suitcases back to New York, and threw the rest away).
I saw friends and family.
We said goodbye to my beautiful Abuela.
In October my counts started dropping. The hemoglobin goblin took up residence and didn’t leave for three months.
After training for twelve weeks, two days before the 5km, I had to drop out because my counts were too low.
I temped across offices in Manhattan: finance, office management, office supplies, health insurance, media, and even the temp agency itself.
I had an article published on the Greenroom blog of New Musical Theatre
I went trick o’ treating for the first time
I had my one year post-transplant check-up and tests
My immune system was still not functioning at normal levels
I had developed osteopenia (the pre-cursor to osteoporosis)
But the main test: still in remission
In November
My friend Zaza came to stay
I had my first proper Thanksgiving complete with family and turkey and flan
In December I battled a cold and a stomach bug
We celebrated cousin Louisa’s first birthday
And the next day, said goodbye to Jake
We ate Chinese in Park Slope on Christmas Day
Then it was time to drive down to Virginia to spend time with Aaron’s parents
And bring in the new year
Over the course of the year
I researched and posted 18 movie musicals from 1929 (with a few more in the pipeline)
I watched filmed live musicals online including Follies (awful - the quality, not the show) and Daddy Long Legs (brilliant)
I learnt Spanish, Danish, French, and Italian on duolingo
We battled armies of cockroaches and one solitary mouse
We made ice cream, yogurt, rice paper wraps, pho, mussels in a creamy white sauce, meringues from chickpea brine, and dumplings dumplings dumplings galore
Aaron started our herb garden with basil and rosemary and mint
Friends from Australia, Canada, England, and Sweden visited New York
It was a year of struggle
A year of pain and depression
A year of one moment, one day at a time
A year of monitoring and checking in and letting go of expectations of a speedy recovery
A year of wonderful friends and family and uncountable kindnesses and generosity
Into 2016 we go
With hope it will be better, easier, kinder, more gentle
May the year be happy, healthy, and well
The end (for now).
Depression and frustration
Fingernails falling off one-by-one, losing my eyelashes, nausea, fatigue, hand foot syndrome, thyroiditis, migraines, mood swings, menopause, depression, weight gain, reflux, the hemoglobin goblin, scanxiety and my hair growing back curly
I spent most of the first four months of the year curled up on the couch
Riding out the symptoms, writing, reading, watching, scrolling endlessly through facebook and twitter and instagram
Short walks to the end of the block, to the store if I was feeling really adventurous, wearing that stuffy mask and trying to be patient with strangers who asked “Why are you wearing that?”
Their fear and pitying stare when you reply,
“I’m recovering from cancer.”
By April I could walk to the park
I fell in love with spring in New York
The magnolias and the blossoms and the blue of the sky
We celebrated Aaron’s 30th with games and good food
I started learning to play the piano
I found an incredible mentor through Imerman’s Angels
I signed up for online courses in poetry and songwriting
In May I was depressed and angry
I couldn’t go to camp
I wept and wailed and railed against the unfairness of this stupid disease and its long recovery
It took a month to find a counselor who accepted our insurance and dealt with cancer
I found CancerCare and signed up for their summer young adult survivor support group
I was allowed out into the world
We had our first date in almost a year - we rode the subway to Prospect Park and ate dinner at Purple Yam
My first subway trip to the city on my own was to go to the support group
In June I finally got to go shows again
We saw Ever After at the Paper Mill Playhouse
In the second half of the year, I made up for a year of not seeing anything and saw 44 shows, including the Into the Woods Original Cast Reunion at BAM, On the Town, Spring Awakening, The King and I, and Invisible Thread. I saw the Drama League Gala for Bernadette Peters.
One of my poems was published in StepAway magazine
In July I visited camp
We had cancerversary dinner in Connecticut and marveled at the year that had been
I met Patti LuPone and thanked her for being so lovely
I stayed with my friend in Connecticut and was treated like royalty
In August I started training for the Cancer to 5km
I got a job at BAM
I had an article published on the CancerCare website
I became a member of the New York Public Library
In September I started working for a friend’s business in wedding planning
Aaron and I sailed down the Hudson at sunset
I traveled to Australia for the first time in four and a half years
I dealt with all my crap in storage. I wanted to burn everything I had ever owned (I didn’t. I gave most of it away, bought two suitcases back to New York, and threw the rest away).
I saw friends and family.
We said goodbye to my beautiful Abuela.
In October my counts started dropping. The hemoglobin goblin took up residence and didn’t leave for three months.
After training for twelve weeks, two days before the 5km, I had to drop out because my counts were too low.
I temped across offices in Manhattan: finance, office management, office supplies, health insurance, media, and even the temp agency itself.
I had an article published on the Greenroom blog of New Musical Theatre
I went trick o’ treating for the first time
I had my one year post-transplant check-up and tests
My immune system was still not functioning at normal levels
I had developed osteopenia (the pre-cursor to osteoporosis)
But the main test: still in remission
In November
My friend Zaza came to stay
I had my first proper Thanksgiving complete with family and turkey and flan
In December I battled a cold and a stomach bug
We celebrated cousin Louisa’s first birthday
And the next day, said goodbye to Jake
We ate Chinese in Park Slope on Christmas Day
Then it was time to drive down to Virginia to spend time with Aaron’s parents
And bring in the new year
Over the course of the year
I researched and posted 18 movie musicals from 1929 (with a few more in the pipeline)
I watched filmed live musicals online including Follies (awful - the quality, not the show) and Daddy Long Legs (brilliant)
I learnt Spanish, Danish, French, and Italian on duolingo
We battled armies of cockroaches and one solitary mouse
We made ice cream, yogurt, rice paper wraps, pho, mussels in a creamy white sauce, meringues from chickpea brine, and dumplings dumplings dumplings galore
Aaron started our herb garden with basil and rosemary and mint
Friends from Australia, Canada, England, and Sweden visited New York
It was a year of struggle
A year of pain and depression
A year of one moment, one day at a time
A year of monitoring and checking in and letting go of expectations of a speedy recovery
A year of wonderful friends and family and uncountable kindnesses and generosity
Into 2016 we go
With hope it will be better, easier, kinder, more gentle
May the year be happy, healthy, and well
The end (for now).
- Published on
Scanxiety ("scan-zi-etee")
Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination"
Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination"
Remember that scene in Kindergarten Cop where Arnie says, "I have a headache," and the kids say, "Maybe it's a tumor..." and Arnie replies, "It is not a toomah!" That is the conversation in my head right now.
When I sit for too long on any chair that isn't my couch, I develop an awful pain right down in the base of my tailbone. It makes moving to a standing position incredibly painful. Once I'm standing again, the pain subsides.
My doctor thinks it could be a fractured sacrum, except we have no idea what could have caused it (apart from the fact that the treatment for AML has left me at higher risk for bone damage). All I know is that the pain started after the bone marrow biopsy in October.
Tomorrow I'm having an MRI to determine what's causing the pain. According to the hospital Information Sheet, the MRI will be conducted with contrast dye, in order to "be able to better see any traces of disease".
Basically I'm going to be spending the next 24 hours dealing with scanxiety and repeating to myself in mantra-like fashion: IT IS NOT A TUMOR.
When I sit for too long on any chair that isn't my couch, I develop an awful pain right down in the base of my tailbone. It makes moving to a standing position incredibly painful. Once I'm standing again, the pain subsides.
My doctor thinks it could be a fractured sacrum, except we have no idea what could have caused it (apart from the fact that the treatment for AML has left me at higher risk for bone damage). All I know is that the pain started after the bone marrow biopsy in October.
Tomorrow I'm having an MRI to determine what's causing the pain. According to the hospital Information Sheet, the MRI will be conducted with contrast dye, in order to "be able to better see any traces of disease".
Basically I'm going to be spending the next 24 hours dealing with scanxiety and repeating to myself in mantra-like fashion: IT IS NOT A TUMOR.
I will meditate. I will listed to show tunes (Hamilton is currently on high rotation). I will eat chocolate. I will read Ali Smith. I will get past this MRI. And maybe the day after tomorrow is the day I can start being "normal" again and everything will be ok.
IT IS NOT A TUMOR.
IT IS NOT A TUMOR.
- Published on
The hemoglobin goblin is still here. I had to have another bone marrow biopsy today. My doctor did it herself. At the end, she clutched the bio-bag containing a vial of my blood and said, "I don't know what other tests to run. I want to hold on to this in case I think of something." Inspiring, no? My wonderful nurse practitioner sat with me afterwards while I sobbed. Stupid hemoglobin goblin. I thought I told you to be gone?
Tonight I got to do something fun, and totally out of character: wear designer clothes! Despite the lidocaine still coursing through my system, and my back aching like hell, I decided to go through with attending a special event for CancerCare - a shopping night at the Soho boutique, Nicole Miller. Along with three other survivors, I was there to talk about my experience with cancer, and how CancerCare had helped me.
To start the evening, we were taken to NARS Cosmetics and had our make-up professionally done. The make-up artists were so lovely, starting off the session with face massages and making us feel utterly pampered and special.
Back at the boutique, the staff of Nicole Miller helped us pick out outfits and personally attended to each of us. It was so much fun to wear a dress I would never ever even think about trying on because it costs almost half my month's rent!
The guests arrived, and after some light refreshments and shopping, the four survivors told our stories about how CancerCare had helped us.
No matter how many cancer stories I hear, the thing that always gets me is how goddamn awful this disease is. It doesn't matter what kind of cancer it is, how long ago the treatment finished, or how great your support system is, cancer effing sucks.
Tonight I was pampered and made to feel incredibly special. It was truly lovely, and a great way to ignore the goblin for a couple of hours.
Thank you to utterly lovely staff at Nicole Miller, NARS Cosmetics, and CancerCare for making the evening possible!
Tonight I got to do something fun, and totally out of character: wear designer clothes! Despite the lidocaine still coursing through my system, and my back aching like hell, I decided to go through with attending a special event for CancerCare - a shopping night at the Soho boutique, Nicole Miller. Along with three other survivors, I was there to talk about my experience with cancer, and how CancerCare had helped me.
To start the evening, we were taken to NARS Cosmetics and had our make-up professionally done. The make-up artists were so lovely, starting off the session with face massages and making us feel utterly pampered and special.
Back at the boutique, the staff of Nicole Miller helped us pick out outfits and personally attended to each of us. It was so much fun to wear a dress I would never ever even think about trying on because it costs almost half my month's rent!
The guests arrived, and after some light refreshments and shopping, the four survivors told our stories about how CancerCare had helped us.
No matter how many cancer stories I hear, the thing that always gets me is how goddamn awful this disease is. It doesn't matter what kind of cancer it is, how long ago the treatment finished, or how great your support system is, cancer effing sucks.
Tonight I was pampered and made to feel incredibly special. It was truly lovely, and a great way to ignore the goblin for a couple of hours.
Thank you to utterly lovely staff at Nicole Miller, NARS Cosmetics, and CancerCare for making the evening possible!