There are only a handful of times every year that I need to wake up from an alarm clock. (Lucky me) It’s mostly for early morning flights. I spend most of these nights half awake, waiting for the alarm, sure that it’s about to go off and yet suddenly surprised when it does.
That’s how I feel right now. Since December of 2011, I have been in that half sleep, waiting for something. And here we are, almost four years later and I finally got that other shoe dropping type call last week from my new doctor, jarring me from sleep. I had had my routine MRI the day before. As routine as, laying face down with your boobs in a vice, shitty music in your ears and noises that I’m imagining compare to a space shuttle takeoff all around you, can be. He told me they saw a 10mm node in my right axilla (street for axillary nodes…which is fancy for armpit nodes) We agreed we weren’t going to worry until there is something to worry about.
So on September the 11th, an already somber day, I walked into my breast imaging center. It’s not at my typical hospital, but it’s the one I go to for all of my imaging. I am a regular.
I saw my usual tech in the hallway, as I walked in on Friday. This felt different from my other ultra-sounds. It was not routine, I was there with purpose. A new woman, Lori, did my scan. It takes the new ones to tell you the things no one says, but you know others were thinking. “I was looking at your original imaging. There was a mess of cancer in your axilla. I have never seen that much cancer in the nodes with such a small tumor in the breast” What can I say, I’m a medical miracle. She checked my right side first. It’s my good side. The side that hadn’t given me any problems, up until now. There it was, plain as day. I stared at the huge black circle in the middle of the screen. Nothing screams cancer like a black circle in the middle of that screen. Lori and I sat quietly. Then she moved over to my left side, the side that has been nothing but trouble. I have had 22 nodes removed on my left side. Hard to believe there are any there to show up at all. And there it is, another large black circle. “Have you been sick, scratched by a cat, just a little common cold?” She asked hopefully.
“Sure, maybe, I don’t think so.” That’s what cancer does to you. It makes you wish for a cold, a cat attack, the bubonic plague.
Lori left the room. I sat alone listening to Journey “Don’t Stop Believing” and gave cancer the finger for giving me yet another song that I won’t be able to stomach hearing again. (I’m that weirdo who cries to Adele’s-Someone like You, in Target to this day) My favorite tech, came in. “It could be many things” she said.
This is a huge improvement from 4 years ago, when she told me there was nothing else it could be. So, my ultrasound guided biopsy today feels different. The one I had four years ago, was not for a diagnosis, it was to gather more intel. Today, they will send it off to a lab and I will sit waiting. I am hoping pathology is not too busy this week, with the Jews being the lion’s share of breast cancer patients and it being the high holidays and all. More likely, I will hear on Monday.
So, send me your positive mojo, your good vibes and I will try to go on like nothing is happening, like I am still sleeping soundly, waiting for my alarm to go off.
When I was in 6th grade, Katie O’Haren told everyone I was a lesbian. I had not yet kissed a boy, didn’t wear make-up and was taller than most of the boys: that was all of the proof she needed. I was sure she was wrong, the posters in my bedroom of Matt Dillon, Simon LeBon and C.Thomas Howell told me so.
But, the rumor spread, the way rumors did back then: a whisper in the locker room or at the lunch table. And then, it was over. Another piece of gossip took its place.
I now have a 6th grader. (Holy shit, that came out of nowhere). And what happened this week with Cecil the lion, makes me fear for my children and all of their peers. My fears, have nothing to do with the killing of this creature. My fears are wrapped up in our world’s response.
I am not condoning the cold blooded and heartless torture and beheading of one of the world’s most majestic creatures. I too was outraged, sickened and angry. But, then I saw the world’s response: death threats to him, to his family. Are we any better than him, any less violent?
I do believe there are social and economic consequences of being an asshole. Our government did not take this Lion murdering Dentist’s business away, the court of public opinion did…with the help of Yelp, of course.
I cannot help but relate the intensity of the Cecil situation, back to my own life. If I were in 6th grade today and Katie O’Haren went on Facebook, Instagram, Twitter, Jimmy Kimmel and Snap Chat to tell the world I was a Lesbian, would I shrug it off, the way I did in 1985? I knew then the rumor could only travel as fast as our lunchroom configuration would allow.
Today, I fear, a rumor or even a careless act, feels much more permanent to a teenager, much less forgettable. It can’t be a coincidence that teenage suicide is on the rise as our immediate pictures, foibles and snapshots circulate at lightning speed.
We may as well throw out our court system. People are tried and convicted on the internet within moments of something happening. Is all of the info we are getting at such a rapid pace accurate? Sometimes it takes time to suss out the details. As we know there are at least 3 sides to every story and sometimes even video lies. (Instant replay taught me that)
I feel like we are getting dangerously close to hangings in the town square. Our mob mentality is based on our own morality, but believe me, lynch mobs though out history have always thought morality was on their side.
I mourn for that lion. But I mourn for that man and his family too. His life is over, as he knows it. The court of public opinion has spoken. Justice is swift: off with his head.
I went to an event. It was the dedication party for the shiny new Breast Center at my hospital. I am amazed to find that I have a hospital. It’s mine. I never did before. The boys were born in the very first hospital in the US. Seth worked at a very prestigious hospital back in Philly. But, here I am, invited to ribbon cuttings, hugging and kissing the doctors, other patients, the valet. It’s my hospital.
On my way up to the dedication party, I was in my usual routine of juggling. Show a quick condo, make sure the contract was emailed, apply mascara at stop light. Check email at stop light.
“Joanna, please call me before you leave for the event”
I called the Development office to see what last minute change was being made. My contact/friend had already left for the party.
After the valet bear hugged me, I made my way up to the crowd. The woman who had emailed me earlier, stopped me at the edge.
“I wanted you to hear this before you arrived. (I braced myself. Nothing good starts with that sentence) Dr. P has not renewed her contract.”
I have never had a doctor before. Like this hospital, she is also mine. I have seen pediatricians, dermatologists, general docs and a laundry list of specialists. But, until December of 2011, I never had relied so heavily on one physician to translate, soften blows, spell it out, hear me out, listen, talk, encourage, remind and heal.
We are in this together. I can’t believe she’s breaking up with me. Like a first love, she is all I know in this new world of mine.
I stood there, processing.
I wish she was taking a job in North Dakota. It would be a cleaner break. Instead, she will be an hour from my house and more of a concern, not covered by my insurance.
So close and yet so far.
I drove home a little shell shocked.
Do I choose my hospital or do I choose my doctor?
Seth was sad when I told him. But, always the solution guy, he said I can do both. Commit to my hospital, while I sneak in an illicit appointment or two with Dr P along the way.
That would just feel like prolonging the inevitable.
This break-up is so personal. Dragging it out may hurt more.
She has been telling me for a while that I can go from my every 3 months to an every six month check-up with her.
“You can’t get rid of me that easily. I’ll see you in 3”
I think she has been trying to let me down easy.
This has got to be hard for her. Leaving her thousands of patients behind. Not knowing who makes it. Who doesn’t. Maybe I’ll give her a call. Or maybe I’ll start seeing that new guy, he has kind eyes. Who am I kidding? I’m not ready.
Breaking up is hard to do.
My grandmother set up my father’s deathbed in 1955. It was in the corner of their living room. A quarantine of sorts. It’s where he spent his 5th year, rather than attend kindergarten with his friends.
My grandmother had gone through a lot of heartache in her life: escaping her country, leaving a life behind on the run.
There are so many theories that have floated around our family. Theories of what made her such a resentful and unsympathetic mother. She was particularly unkind to my father. She was much older when she had my dad. His siblings were 18 and 10 when he was born. He was clearly her mistake. Was it the unspoken traumas that she faced as a young girl, when she was separated from her family in the woods of Kiev? Alone in the woods for two days, she escaped death, but possibly faced something that broke her and arrested her emotional development?
I have another theory. When the doctors told her, my father’s painful and slow death would play out in front of her, in the corner of the living room, while she sat and watched, she went into survival mode and disconnected.
My dad didn’t die in his deathbed in Boston. We know that he went on to marry (at 19), have two kids, complete a fulfilling career. As I type, he is with my mom,
and their fearless travel companions, The Nixons, somewhere in Australia, living life to its fullest.
In 1953 there were over 58,000 cases of polio in the US, mostly children, many dead, many crippled. The polio vaccine became a reality soon after my dad’s long illness. In 1960, there were just over 2000 new cases and by 1965, only 61 people contracted polio.
These stats are the miracle of science.
In 1955 Americans feared Russians, Joe McCarthy (if you were Jewish or worked in hollywood) and Polio. Today, we fear vaccinations, doctors and gluten.
I am frustrated with the parents who have chosen to “delay” vaccinating their children. They talk about freedom and choice. As a modern society, we are not Truely free. I must wear my seatbelt. I cannot throw a bottle at the woman who didn’t hold the door for me yesterday. I can not drive my neighbor’s car, without his permission, just because it looks fun to drive. There are consequences.
The consequences of “delaying” vaccinations are serious. We are bringing back diseases that crippled and blinded children. We are reacting to fear that has zero scientific evidence.
The optimist in me sees the positive outcome of this anti-vax movement. We finally have a cause that brings the far left and far right together. Fear, in this case is a uniter.
I am empathetic to the fear of the parent who chooses to delay vaccinations. But, I believe it is selfish to put other people’s children at risk, in the off chance your child may avoid an illness.
My generation has not lived through a true epidemic, in this country. We have the occasional SARS, Avian, Ebola scare. Thanks to modern medicine, all of these things have been contained…so far.
I am ok with you not vaccinating your child. But please, do not go to the mall, Disney World, school, the movies, the supermarket or my home.
My children are vaccinated, but my friends with babies, should be able to walk freely without worrying about measles or polio.
They already have to worry about gluten. Oh,and the Russians, they are making the rounds again too. Like fashion, music and fear…wait long enough and it will come back in vogue.
Be grateful for the gynecologist. I hadn’t been in a while. In fact the last time I saw him, was the first time I saw him, a couple months after my move to Miami and a few days before my diagnosis.
I apologized for my lapse. But when you are busy with, med oncs, rad oncs, gyno surgeons, breast surgeons, tumor markers and a monthly pellet implants, the pap goes by the wayside.
So when I say, be thankful. Be thankful that the only dr’s appointment you most likely have in your rotation is your gyno, with the occasional pop in to the dermatologist for a weird mole check.
He gushed about how great I look. This throws me. Every time. I look like me. The guy met me once, three years ago. I think I look the same, just older.
Our appointment was awkward. He said, “thank god we caught it early.”
I wanted to say, who is this “we” that you speak of muchacho? You didn’t notice the cluster of cancer in my armpit, when you did my breast check.
I did say, “it wasn’t early.”
He probably thinks I’m an over sensitive jerk. Maybe I am. But, I think I need to find a new doc. I want someone to look at my file and know that the inoperable nodes in the chest, allow me to have my doctors know that cliches like thank god we caught it early, are reserved for the well wishes on the street or in the waiting room, not from my medical professionals.
I need someone who will not tell me that he has never heard of anyone on the combination of medications I am on. He ordered me a bone density test.
“You are trading one problem for another.” He said.
“I am trying to live longer.” I said
He asked me if I have thought about synthetic estrogen.
“Estrogen is my cryptonite. Drama and estrogen are the only things I try to avoid. Home grown or synthetic.”
Even after a weird and contentious appointment, I left feeling like a regular person, who goes to regular appointments. There was no breath holding while scans or tumor markers were taken. I felt normal. I am grateful for the gynecologist.
Robin Quivers and I have the same stage of cancer. If you don’t know who Robin Quivers is, congratulations, you don’t spend your day sitting in parked cars so you can hear the end of a story that you are hearing for the second time that day. When Robin disclosed her stage 3C status on the Howard Stern Show, I felt a weird camaraderie, as if she had announced she loves 90’s music and binge eating Halloween candy while everyone else in the house is asleep. Even though our type of cancer is not the same, there is a weird comfort for me, hearing about someone who is staged like me and doing well.
Last month I went to a wellness retreat for metastatic breast cancer survivors. Metastatic is another word for stage 4. It is the last stage, when breast cancer has spread to exotic places: liver, bones, brain. All women with breast cancer have faced their own mortality. Women who are stage 4, face it in a more concrete way. I felt like an imposter as I spent the day listening to these women, meditating and drawing pictures, as my own fears percolated in my gut.
A week before the retreat, a man, I sorta know, said “you need to talk to my friend. You are so alike. Both really great and you both have breast cancer.”
I am starting to learn, what it’s like to be a lesbian in Nebraska or a single black woman in Idaho. People often set you up because they know one other person “like” you.
I had an evening phone conversation with my set-up, as I paced my block. What I thought would be a 10 min get to know you, was a painful 45 minute break down of her experience. I speak to many strangers who are recently diagnosed, I enjoy these conversations. This woman was years out from her initial diagnosis. She started with my least favorite line, “thank god I found it before it went to any nodes”.
If I had an additional minute to live, for every breast cancer survivor who said, thank god it hadn’t spread to my nodes, I would live to be 105.
THANK GOD I AM NOT YOU, is basically how these conversations start. It’s a reminder that I am your worst case scenario. She continued with another greatest hit, “my friends were jealous I got a free boob job”. Your friends are assholes. This is not a boobjob. It is an amputation. It is a surgery that is done to save lives, not to make your friends jealous.
When she began to tell me about her chemo experience, which was a shot of Zoladex, that she had years ago,once a month for 6 months, I had to end the call.
Zoladex is not chemo. I’m currently, indefinitely on Zoladex. Calling Zoladex chemo, waters down what chemo really is. When you tell people you made it through chemo while working and raising kids, with barely any side effects, people will wonder why their sister, cousin, neighbor was sick in bed during her chemo. Not as strong as you or just a drama queen? There is probably an urban legend about an amazing woman that never lost one strand of hair. Your follicles must have been so strong.
Maybe she feels the need to call this medication “chemo”, because it gives her cancer street cred. I know some women who feel people haven’t taken their illness seriously, because they had never lost their hair. I empathize, sorta.
This conversation was actually helpful. It reminded me, when at the Stage 4 retreat, to do more listening than talking and practice the elements of the circles of grief.
What is that you ask? A new NBC game show? Let me try to do it justice:
If someone is going through something hard: divorce, death, a major illness, job loss, etc, the people around this grieving person need to listen more than talk and consider how each word has meaning. Let’s give this a try. If your coworker opens up to you about the death of their 5 year old, you answer with A) “I know exactly how you feel. Let me talk for 40 minutes about the miscarriage I had 15 years ago.” B) tap into your empathy C) listen If you answered B and/or C, I think you get the hang of The Circle of Grief.
Everyone’s fears and sadness are valid and we will all get our unfortunate 15 minutes of grief fame. In this 15 minutes we can yell, stomp feet and demand attention. But, when we are talking to people going through something, let’s all try to do better and be better. And then when you are in the center of the circle, you will be amazed how these same people surround you and listen.
I post this, not with bitterness, sadness, snarkyness or drama. I post today, exactly 3 years from my day of diagnosis: grateful. I am grateful to be No Evidence of Disease. I am grateful to have the most empathic listeners surrounding my circle. I am grateful I am here.