survivor’s lap

At the end of every Relay for Life, the annual walk-a-thon sponsored by The American Cancer Society, all of the siblings, parents, children, spouses, and friends of cancer survivors clear the track.  The only people left standing are those who have been through cancer themselves. 

When everyone else has retreated to the stands, they take what is called The Survivor’s Lap, to the accompaniment of a standing ovation from the crowd. 

I’ve talked to many breast cancer patients who have participated in the Relay and I don’t know of anyone who hasn’t sobbed during their Survivor’s Lap.   Because they remember friends who aren’t there to walk with them this year.  Because they’ve been through a hell most people will never know.  Because while most people do nothing special to be alive, these survivors have endured a storm of procedures and surgeries and chemo and radiation to keep their place on the planet. 

Today, my last day in New Haven, I took my survivor’s lap.  No one was watching or clapping or holding my hand as I walked through the drizzle, but I did it anyway.

I walked past the Starbucks where I got a Valencia mocha after I interviewed at Yale Med School 6 years ago. 

I walked past the bookstore with the pay phone where I called my parents to tell them I’d been accepted.

I walked past the courtyard where I chatted with a former Surgeon General before she gave the commencement address to our graduating PA class.

I walked on the path I took to the surgeon’s office the day I got my biopsy results. 

I walked past the restaurant where I met my then-boyfriend after I got my hair cut in anticipation of chemo.  I remembered how he held me at arms’ length while he studied me, and then said, “You look like a little boy.  This is going to take some getting used to.” 

I walked past the cafe where I sat in silence with him after he called it quits because it was ‘too hard.’

I walked past the pharmacy where I got all of my prescriptions filled while I was on chemo.

I walked past the hospital where I spent 3 weeks in November and December, trying not to die from pneumonia. 

And I cried.   Because it was hell.  Because I survived.  Because I almost didn’t survive.  Because I lost my optimism.  Because I almost lost my faith.  Because I will never be the same. 

Because I will miss it all.  And because I won’t miss it at all.

my Christmas card

I’m not sending Christmas cards this year.  For a lot of reasons.  I couldn’t find cards I liked, my address book is packed, I forgot to buy stamps, I just got out of the hospital…and, well, I just don’t feel like it. 

So if you’re lucky enough to be reading this blog, here’s my gift to you.  It’s a song called Better Days by The GooGoo Dolls.  Merry Christmas from me.

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we’ll find better days
Cuz I don’t need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we’ll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight’s the night the world begins again

And it’s someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we’re alive
And the one poor child that saved this world
And there’s 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight’s the night the world begins again

I wish everyone was loved tonight
And somehow stop this fight
Just a chance that maybe we’ll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight’s the night the world begins again
Cuz tonight’s the night the world begins again

redemption

During the past 7 months while I’ve been going through surgery, chemo, radiation and then pneumonia, I’ve prayed two very simple prayers: “Jesus, heal me,” and “Jesus, you have to redeem this.”   I prayed the former when I was sick or scared, and I prayed the latter when I was frustrated and everything seemed to be going wrong and all I could remember was that God had promised that ‘all things work together for good…’

When I prayed for God to redeem my life and my pain, I was thinking of an intangible and possibly eternal  reward for physical suffering.  But the other day, I had another thought.

This week I’m packing up my apartment in preparation for moving to Portland in January.   I’m limited to two suitcases, so everything in my apartment falls into one of two categories: it fits in my suitcase, or it gets tossed in the Goodwill pile. 

 But there are a few exceptions, a few items that don’t seem to fit into either category.  Since April of this year, when I was diagnosed with invasive breast cancer, I have kept every prescription bottle and every hospital bracelet I’ve gotten.  I took inventory yesterday: I have 52 prescription bottles and 39 hospital bracelets.

But I don’t know what to do with them. 

I keep wishing that God would create a cosmic redemption center, like the one at the local grocery store where you can turn in bottles and cans for 5 cents a piece .  I wish I could take these tokens of how much I’ve been through over the past 7 months and trade them in for some kind of tangible reward — maybe sunny days or free first class upgrades or good parking spaces at the mall.

I want some kind of compensation for the damages I’ve incurred.  I want something to show for all the nausea and muscle aches and bone pain and surgery and fatigue and scars.

Instead, all I have to show for all of this is…well, me. 

broken birthday

This year, I decided to celebrate a birthweek rather than a birthday.  I got out of the hospital on Friday afternoon, and on Saturday I planned to go out to dinner and then have a slumber party with friends.  I bought groceries to make everyone brunch on Sunday morning.  And on Sunday afternoon, we were going to bake Christmas cookies.

Right.  So that was the plan.  Here’s what actually happened.  I got to my friend’s place Saturday afternoon and was too exhausted to go out to dinner, so my friends went out together and promised they’d be back soon to watch movies and hang out.  Turns out they drank too much wine at dinner, got drunk, then went out to a club and drank more, and didn’t get home until 2 am. 

Sunday morning, they were hungover and vomiting.  I had to drive to my apartment and get my anti-nausea meds I took during chemo to get them to stop throwing up.  Obviously, the food I bought for brunch went uneaten. 

On the way to the cookie bake that afternoon, I dropped these friends off at the grocery store to get baking supplies.  While I was waiting in the car, a disheveled woman knocked on my window and explained she was pregnant and homeless and hungry.  I gave her all the money in my wallet — which was all the money I’d received that week for my birthday. 

At the cookie bake, a dozen of us met in a ginormous kitchen to bake cookies and then exchange them.  I wasn’t up for baking, so I sat in the kitchen and chatted with everyone while they cooked.  I quickly realized this wasn’t a helpful situation — everyone there except me was engaged or married, and several had young children.  The entire conversation centered around a few topics: engagement rings, wedding plans, birth control, and breastfeeding.  I had nothing to contribute to the conversation.  And, in fact, the more they talked, the more alone and deficient I felt.  I left early and in tears.

On Monday, my actual birthday, I spent most of the day in bed, too exhausted to think of anything fun to do.  I had made plans to go out to dinner with a friend, but we had takeout in my apartment instead because he’s too depressed and agorophobic right now to venture out into public.

Another friend was supposed to take me to a show in NYC on Tuesday, but he got sick so we decided to do something low key.  We went to a movie and left before it was over because it was so uninteresting.

 And that was my birthday.  My week was broken — mostly thanks to my friends, who are broken and imperfect…but then, so am I.  So maybe it was a fitting birthday after all.

happy birthday to me

Today is my birthday.  I am 29 years old.  Last year, my friends threw me a dinner party to celebrate my birthday.  When they brought me the cake, I closed my eyes to make a wish before blowing out the candles, and people started screaming — my hair was on fire.

It makes me wonder if the universe was trying to send me an omen to warn me about the upcoming year.

I can’t tell anyone about what I’m wishing for this year, because then it won’t come true, but at least my hair won’t be catching on fire.

84 percocets

When I’m not in the hospital or at the cancer center getting chemo, I like to live as though cancer does not exist.  During the past six months, in spite of losing my hair and my breasts and about 10 pounds, I interviewed for jobs, went on a few first dates, test drove cars, put an offer in on a house in Portland, took a cruise to Bermuda, and even went dancing with the captain of the cruise ship.

I don’t think I’m living in denial; I just prefer to live my life to the fullest and not let cancer call the shots.

I think that’s why it hit me so hard when I was diagnosed with pneumonia a month ago and ended up in the hospital for most of November and part of December.  To everyone there, I was nothing but a cancer patient with an infected lung. 

When I went to the ER in sepsis, the resident even asked if I wanted to be resuscitated if I coded, implying that because I had cancer, my life might not be worth saving.   He even randomly ordered a CAT scan of my brain, saying, “You might have brain mets we don’t know about.” 

When I had a chest x-ray a few days later, the tech said, “I’m so sorry to have to ask you this because the answer is obvious, but is there any chance you could be pregnant?”  I didn’t mind her asking if I could be pregnant — it’s a smart question to ask a 28 year old female before radiating her.  But I was offended by the preface to her question — “I’m sorry…the answer is obvious…”  It made me wonder what was so obvious.  Did she think I was automatically infertile because I’d been through chemo?  Or even worse, that no man in his right mind would sleep with me because of my disfigured chest and bald head?

Then when I was finally ready to be discharged, the intern brought in a stack of prescriptions for various antibiotics, an albuterol inhaler, …. and a boatload of percocets.  Eighty-four, to be exact.   I hadn’t asked for any pain medicine to take home with me, let alone Percocet, one of the strongest oral painkillers there is.  What did he think, that all cancer patients must be suffering an insurmountable amount of pain?  Or that I had nothing better to do with my life than spend my days in bed, looped up on hefty doses of narcotics?

I took the prescription home, and promptly tore it up.  Because I refuse to let cancer define me.  I refuse to let others’ perceptions determine how I feel about myself.  And I refuse to let others’ ignorance dictate my choices. 

Cancer will always be what I had, but it will never be who I am.  I will not use my past as an excuse to forfeit my future. 

I will continue to date. 

And dream. 

And dance. 

where have all the flowers gone

Today is day #10 of my most recent hospitalization.  My pulmonologist suggested that he might keep me in over the weekend to make sure my pneumonia gets better.  I told him my birthday is on Monday.  “If I’m not out by Monday, I’m climbing out my window,” I told him, envisioning myself with a rope of knotted bed sheets escaping from my 9th story room in the middle of the night.

Another day or two in the hospital might not seem like anything to an outsider, but to me, every day in this joint is pure torture.   I tried to explain what it feels like to one of my friends:  “How ’bout I lock you in your bedroom and you’re not allowed to leave for ten days?”   Any normal person would go insane, right?

Which is why, when I was admitted for the second time this month, I cried for hours.   It may seem that every subsequent hospitalization should be easier, that every day a cancer patient is sick becomes more ‘normal’, but that’s not how it is.  For me, every day I’ve been sick, every chemo session I’ve endured, every hospitalization I’ve gone through, has been harder and harder because each time I have less of an emotional and physical reserve…and, unfortunately, less and less support.

 During my first hospital stay last year after my mastectomy, I had more visitors than I knew what to do with.  My friends who worked at the hospital came to see me every day.  My window sill, night stand and bedside tray were full of flowers and plants and cards. 

Three weeks ago when I was hospitalized again, I got flower bouquets from a few people and lots of visits from friends.

This time, even friends who work in the hospital where I am haven’t been to see me.  And I haven’t received a single flower. Or balloon.  Or plant.  

So now, in addition to feeling sick and tired and feverish and nauseated…I also feel forgotten.  And there’s no cure for that. 

bad day

Yesterday was Day 5 in the hospital.  It was a better day, actually.  My blood pressure came up, my cough got better, and I had more energy.  I went to sleep last night hoping I’d be out of the hospital soon.

 And then I woke up this morning. 

As soon as I sat up, I threw up all over my breakfast tray.  Then I started wheezing, and had to get respiratory therapy.  And then my blood pressure dropped and I had to get more I.V. fluids.  And then my nurse came in to do ‘chest physiotherapy,’ which involved her beating on my back so hard I felt like my teeth were going to fall out of my head.

And then the pulmonologist came in and told me that my pneumonia is getting still worse, in spite of five antibiotics, and he wants to schedule a bronchoscopy tomorrow.  A bronchoscopy involves sedating me, putting a scope into my lung, and taking biopsies of the sputum and lung tissue. 

After he left the room, I chided myself.  I should know better than to hope for better days.  I should’ve learned by now just to hang on for the ride.  Some days it’s too much to hope for things to improve; it takes all the faith I can muster to hope that I will survive. 

fragile

I finished my oral antibiotics on Friday, the day after Thanksgiving.  I flew from Illinois to Connecticut on Saturday, and by Monday I was starting to feel sick again.  I woke up Tuesday morning with a worsening cough and a fever, and went to the cancer center to see my doctor.

My temp was 102.0, I was coughing up green phlegm, and I was just feeling terrible in general.  My doctor did a quick exam, and decided to put me back in the hospital.

So I drove home, packed an overnight bag, and a friend drove me to the hospital.  As I sat in my new room waiting for the nurse to come in and start my I.V., I looked out the window at the sunset and cried and told God (again), “I know you say you love me, but this doesn’t feel like love.”  Cancer, chemo, radiation, vomiting, fevers, and pneumonia do not feel like love. 

Over the next 24 hours, various specialists came to see me…oncologists, pulmonologists, infectious disease doctors…and they all said the same thing.  “You’re immune system is so fragile right now.” 

Two days into my hospital stay, my test results came back.  I have an infection called MAI, mycobacterium avium intracellularae.  It’s a rare infection that usually only end- stage AIDS patients are susceptible to.  Somehow, chemo wiped out my immune system and MAI was able to set up shop in my lungs.

But even after I started antibiotics for MAI, I continued to get worse.  The pulmonologist decided that I most likely have a bacterial infection on top of the MAI, and started me on a new set of I.V. antibiotics. 

As she was ordering the antibiotics, the pulmonologist said again, “You’re just so fragile right now.”

Fragile.  It’s a good word for me right now.  My immune system is fragile.  My health is fragile.  My hope that I’ll have a life beyond this sickness is fragile.  My faith that God loves me is fragile.  My joy in spite of these circumstances is fragile.  And I feel powerless to do anything about my fragility…except to pray, by God’s mercy, that I do not break.