My 10 Year Cancerversary

Hope

 

“I look like such a mess,” I muttered to my Mom, focusing on my thick wavy hair consuming my face and my eye that looked so red surely even people and not just cars would stop at the sight of it.  No makeup on this day, no energy, not even good balance as I hung on to my Mom’s arm.  “Wait a sec,” my Mom said somewhat sternly (for her).  “Remember, that’s not good self-confidence,” and as she said the words she put her hands on her hips and took a wide step out with her legs.  “Oh yessss….” I joined in, nodding my head, doing the same.  “My super power is”…. I trailed off trying to think of something cool.  Just then a woman walked into the bathroom and did a weird kind of dance around us, clearly not wanting to engage in whatever the heck it was that we were doing.  I giggled and whispered to my Mom, “My super power is making strangers uncomfortable!” and then we got the heck out of there, laughing together all the way down the hallway.

It had been a long day at Mass Eye and Ear in Boston, but it wasn’t over yet, and we were just doing the best that we could to try to keep our sense of humor intact (this is essentially what has gotten us through the last ten years).  My Dad had just reported that there is a social psychologist and associate professor from Harvard Business School who is making the TV circuit and has even done Ted Talks, and she’s been spreading the message of the benefit of powerful and positive body language. One of the things that she encourages people to do, say before an interview (or anything where your self-confidence is shaken), is to take some private time and puff out your chest, put your hands on your hips, and stand with your feet shoulder-width apart. Try for this two minutes:  It’s supposed to invoke a sense of confidence.  Hence the bathroom stance that my Mom and I were trying to perfect as I looked in the mirror and before I went to get an injection in my eye.

It’s been, dare I say it, a grueling last week and a half.  Between having to go to the Mass Eye and Ear Emergency Room one Saturday afternoon (all while vomiting and holding my head, it turns out that I’ve been growing some abnormal blood vessels in my eye and it’s creating a dangerously high level of pressure in my eye) and my scans (4 hours worth) and the follow-up with my oncologist (nerve-wracking doesn’t even begin to cover it and “don’t hit the panic button” but there is something very, very small in my liver that at the moment is unidentifiable), and being told that I have a huge kidney stone that may have to be intervened upon, plus a two-day professional development conference in Boston taking half of my weekend hostage, I now stood here waiting to get an injection in my eye and feeling how most must feel when they’re put in a straight-jacket.

I’m keenly aware that things could always be worse, but for once, I kind of just wanted to sit in this place and feel sorry for myself.

After being stuck while traveling to Austin and having that trip down there take 13 hours, missing work and coming home to a bad cold and then strep, I tried not to let the upcoming scans dictate my mood every second of every day, though it was hard.  Just a few days after my scans, I had been told by an on-call doctor that if these injections in my eye didn’t work, well then, surgery (glaucoma, he said?), or possibly… his grave voice trailed off on the phone.  I immediately felt like I was falling, though I was planted firmly on the couch.  Lose my eye, I thought.  Lose.My.Eye. I had gone through treatment with two men at the time back 10 years ago (we all just happened to be going through the process at the same time and our appointments were always near each other’s) and one had eventually lost his eye, I remembered.  I thought about living with metastatic cancer and only having one eye.  I thought about all of the times that I had been told I had such pretty blue eyes and how shallow that was and how none of that mattered except for my life, and yet… I wanted to keep my eye.  So desperately.  I wasn’t sure that I could go through anything else quite so traumatic in my life.

My surgeon who I have known for ten years and who is the best doctor in the world for ocular melanoma (in my humble opinion but probably in most people’s opinions as well) had never cracked a joke with me, in all this time (a very calm, quiet, matter-of-fact man).  Didn’t matter, as long as he was caring for me I knew that I was in the best hands (he pretty much invented the proton beam therapy that saved my life), but still, it was amazing to hear him joke with me yesterday.  I think it was the tears that did it.  I told him what the on-call doctor had said to me over the phone, how I didn’t ask him about anything than a quick question about the injections, how he just started giving me all of this really scary info that I didn’t want (or need, quite frankly).  He said that person is in training and waved his hand away like, “Don’t listen to him,” and that he would take care of it (and sure enough, about five minutes later, I witnessed him in deep discussion with this resident, giving him a what-for, by the looks of it).  It felt good to know that my doctor was taking my concerns seriously.

I looked around the doctor’s office and couldn’t help but remember that 10 years ago I was being diagnosed with something that I had never even heard of.  My parent’s were away on vacation on a boat in the middle of nowhere.  I lived alone.  I called my friend from work when I got the news and she came to the doctor’s office to get me and bring me home.  I remember her cleaning out my work tote bag and finding a banana that was about to rot.  Why do I remember that?  I remember calling my cousins.  My parent’s were frantically trying to get off of the boat, one of my best friend’s was in India buying things for her upcoming wedding, and my other best friend cried on the phone when I told her.

My brother immediately raced to my side, taking the train from Maryland where he lived to New York City, where I was at the time.  He set up every doctor’s appointment for me; called family friends in the medical field to find out who the best were, to get opinions and second opinions.  He got our train tickets, our hotel reservations, and basically made sure that I didn’t fall apart on his watch.  I remember being scanned to see if the cancer had spread to anywhere else in my body, but looking back on it, not completely understanding the consequences of those scans. I remember that I was never alone.  I remember being in awe of my brother and his ability to just completely take over the situation and take care of all of my needs at the most terrifying time in my life.

Fast forward now to this day, and thankfully, I wasn’t alone either.  I was nervous about the injection in my eye; all I could picture was a huge needle coming right at me, with no ability to close my eyes so as to at least pretend that I was on a beach or something.  “It’s nothing,” my doctor said in his cute Greek accent.  “But can I take something, if I need to?”  I asked.  “Like an Ativan or something?”  (I had very carefully stashed that bottle in my purse that morning, along with three other pill bottles and five eye drop bottles).  “Sure,” he replied.  “You don’t need it, but you can.”  “Can I take two,” I asked?  Then my Mom piped up, half-kidding.  “Yes, can I take one as well?”  Nervous laughter.  “At this rate, you’re going to be making me take one!” my doctor belted out (never heard him belt anything out in my life, he’s very quiet and calm).  We all laughed and he patted my hand and told me that most people have good responses to these injections.  It’s amazing how in the eye of the storm (excuse the pun) just a little joke, a little “it’s going to be OK” or the simple touch of another human being makes a patient feel like they’re being heard, like they’re a real person who is being seen for who and what they are:  Human.  Vulnerable.  A vulnerable human being who just needs compassion and hope.

The injection was scary, I’m not going to lie. Washing out the eye.  Numbing the eye with drops and a needle.  Holding the eye open with a wire clip.  Inserting a needle into the eye.  I found out that I need to have two more, 4-6 weeks apart of each other.  My eye felt like it had a treasure chest of crap in there afterwards– maybe an eyelash?  Some sand?  I mean, who knew what was in there.  But I had my eye.  I was leaving with my eye.  And praying that the rest of the injections would work.

I’ve been doing a lot of praying, lately.  And meditating.  And keeping g-d close.  It’s been a frightening time in my life, and that’s OK to admit.  I’m beginning to realize that the more vulnerable I am with others, the more I admit that I am scared and need the support, the more I realize that I will never, ever be alone. And I’m so grateful for that.

It turns out, being authentic only makes people want to be closer to you.  Isn’t that amazing?  Just be yourself, and you will be loved.

 

 

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4 thoughts on “My 10 Year Cancerversary

  1. I LOVE this. The fact that you are such an incredible story teller falls second to the fact that your passion, drive, positivity, hope, and silliness is so clearly felt by your readers and friends makes you triumphant. You are amazing. Keep dancing with your mom, surrounding yourself with other positive people (including your doctors) and keep puffing up your chest!

    Like

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