Pulled Back To Say Goodbye

Damn. Just damn.

I know it’s been a really, really long time since I’ve been here. I’m sorry for that. There are so many times I’ve meant to write but…you know…life. Life. And that’s what has brought me back here today. Because a life has been lost. An incredible life.

Uzma Yunus.

Uzma was diagnosed with stage 3 breast cancer about a year before I was diagnosed. If I remember correctly, she was already blogging and, when I was looking for others who had gone through breast cancer, I happened upon her writing. I remember reading and thinking, “wow, she puts into words everything I am feeling!” She didn’t sugar coat cancer. Through raw honesty mixed with poetic metaphor, she got to the heart of what it means to live with breast cancer. I was so drawn to that. And when I wrote about my own cancer experience, I channeled her openness and bravery in my own writing.

I remember when she announced in 2016 that her cancer had come back. “Fuck,” I thought! “Fuck, fuck, fuck!” Any time I heard about a recurrence, I thought that but, for some reason, this hit hard. I was not scared to hear about it, but I was scared for Uzma, her husband and her children. Because, for those who don’t know, a stage 4 recurrence is terminal. The average life expectancy is 3 years, although it can be much longer…or shorter. You just don’t know. About a year ago, Uzma wrote, “The data, although new drugs and options remain strong, states: three years average. Granted I am an “n” of one, unique in my disease, body and personality, I still can’t deny the power of odds and their relevance in medicine. Three years echoes in my mind often. This coming New Year is my third year, the final year for an average metastatic breast cancer patient. I am by no means average. I am by no means ready to die either. But fear rears its ugly head. And the thought of ringing in possibly my last year in a fortnight is quite haunting.” Just over a year later, she is gone.

But still, she did not let her diagnosis stop her from living life. While enduring treatment, she has gifted us all with her book, named after her blog, Left Boob Gone Rogue. I’ll admit, I haven’t read or even bought it yet. That’s going to change. But I do not doubt that her words and wisdom are helping thousands of women just like her blog. She has left that as her legacy, to help all of the women who come after her.

Uzma was a force, a light and fierce advocate for breast cancer awareness. She hated pinktober. She loved her family, her work and her life. She did not want to die. She did not want to leave.

On January 3rd, she wrote on her facebook page, “How am I supposed to feel after buying my grave. I have always had a fantasy about a big shadowing tree as if I am sheltered.” She knew the end was near. Uzma, I hope you are now sheltered by that tree and all of our love for you. You will be dearly, dearly missed. I am so sorry this happened to you.

Fuck cancer. Fuck cancer! FUCK CANCER!!!!!!!

The Scare + A Goodbye

I should start this post by saying, I do not have cancer again. (Let me repeat that for my own reassurance.) I do not have cancer again!!! But a few days ago, I wasn’t so sure.

It began last Thursday, when after PT for my lymphedema, I had a pain in my armpit. When I went to feel it, I felt a lump. I asked my PT if she felt it too, and she said she had. I panicked for a second but then convinced myself that it was likely a cyst or ingrown hair. I’ve had them before and they usually go away in a day or two.

But 4 days later, it hadn’t gone away. It didn’t even change size. I mentioned it to my husband, who felt it too and said to call my surgeon right away. I said that I would in a few days if it didn’t go away. But as the day went on, I started to get a pit in my stomach. I started to panic. I began wondering if this was all starting to happen to me again.

I tried to stay calm by reminding myself that I just had a clear MRI a month and a half ago. Surely that would have picked up on a lump that size. I also tried to reassure myself that I would have noticed a lump there before since I’m always stretching out the cords in my axilla.

But what if the lump was hidden underneath one of the cords that just broke. What if the cords have been hiding it and, now that they’re gone, it’s allowing me to feel it.

This thought began to take over. I was doing the dishes and suddenly I was hysterical crying. My husband came to me and asked me what was wrong. “It’s back! I think it’s back!”

It was a Sunday but I immediately wrote to my breast surgeon and oncologist. I didn’t care who wrote me back as long as someone did.

My surgeon got back to me that night, said that it didn’t sound worrisome but to come in anyway to have it checked out. I felt good that I had someone looking out for me but I was terrified that this was all happening to me again. AGAIN!

I started to make plans in my head. What would I do if I had to go through this all again. NO! I could not do it all over again; the surgeries, the chemo, radiation, all of the appointments… I don’t have it in me. But what if I don’t have a choice? What if it’s more than a lump? What if it’s all over my body? What if this is it and I find out that I won’t, in fact, get to see my son grow up? What happens then?

It’s all I could think about. Having to tell Oliver that the cancer was back. That I was going to be sick. And that, one day, who knows when, I wouldn’t be around anymore.

I was paralyzed by my emotions and fear.

My appointment with my surgeon was for Tuesday right before 1:00. My aunt came with me for moral support but we were both climbing out of our skins. I couldn’t believe that this was happening to me again. I tried to have some perspective but, when you have been through a trauma and it happens again, there is no perspective. Just tunnel vision and all I could see was cancer, cancer, cancer.

I was called into the office an hour late (they had squeezed me in). My surgeon came in to feel the lump. She felt it but said it felt like it was in the skin.

“No! It’s deep,” I said!! “It goes down deep!”

“No,” she said. “That’s not deep. That’s not a lymph node. It feels more like a cyst. But we are going to do a biopsy and a sonogram just in case. We can do it right upstairs. For peace of mind. Is that ok?”

I had known and prepared myself for this. I figured she’d want a biopsy. But now that she was actually saying it, I started to shake. But I agreed. I needed peace of mind.

My surgeon is on the 4th floor of my hospital and the biopsy is done on the 10th. So I hopped the elevator and there was no one in the waiting room. “Carrie Ellman-Larsen?” They were ready for me whether I was ready or not. My aunt had to stay in the waiting room and I had to go in alone.

So much of what we have to do with cancer is alone. I always knew that but it felt more vulnerable this time.

I entered the room where I was going to have my biopsy. I nice, small woman came in and began to search for the lump. First, she thought it was my scar. I redirected her finger to where the lump was. “I feel that. Ok.”

She turned on the sonogram machine and began looking around. “It’s mobile,” she said. “It’s hard to pin down.”

“Is that good?”

She found a smaller tool for the sonogram. When she found it, she pointed to the screen. “There it is.”

“There what is? What is it?” I didn’t dare ask out loud.  But there was something to be seen.

She then went to get the needle. She said that the needle would be even thinner than the ones we use to take blood. She said that she would stick the needle in, leave it in for about ten seconds to get a sample and then repeat the process.

My shaking suddenly stopped. Self preservation?

The needle pinched when going in, then there was an achy feeling while collecting the sample. But, thank goodness, it did not hurt.

When she was done, she took each sample and put them in between two slides. Then she said, “I’ll be right back.” The lab was literally in the next room. I would know within two minutes if I had cancer again or not.

The shaking began again.

I texted everyone to keep busy but also to let them know that the biopsy was done and that I was just waiting. I really needed the time to fly by. And it did.

A doctor walked in. “Oh, shit,” I thought!

“Well, it’s completely benign. It’s what we call ‘fat necrosis.’ It can happen after breast cancer surgery. It’s very common.”

I let out a huge sigh of relief and began to cry. It was over and I was ok. I didn’t have cancer. The fear just swept out of my body as if taken by a huge wind and was replaced by huge relief.

I went back down to see my surgeon who was happy as well but had a feeling that it was nothing. I go back to see her in six weeks for a follow-up, just in case. But already, the lump has shrunk in size significantly, although I still feel for it several times a day.

This experience has reminded me that we are never done with cancer, even if we technically are. We are imprisoned by our fear of recurrence. We know it can come at any time. We see it happen to our friends just as much as we see lifelong remission. We’re standing on a ledge and we don’t know which way we will tip. For now, my feet are still on the ground.

Which brings me to the goodbye portion of this post. As many of you know, Beth Caldwell passed away this week. I only knew her through her blog posts. I commented on hers, she may have commented once or twice on mine. But that was the extent of the relationship.

But I knew her best as a fierce advocate for Stave IV breast cancer. Despite her own pain, she co-founded Met-Up and testified for more research for Stage IV. She was an educator, a leader, a wife and a mother. Her daughter is in Kindergarten, just like Oliver.

I know she didn’t want to leave her family. She loved them so much. And when we see another one of our sisters pass, we see ourselves in them. We know that one day it can be us.

So, what are we going to do about it? Advocate. Demand money go to research for Stage IV. Donate. Hug our children. Do the things we love in life. Smile more. Take risks.

These are the things we can do to honor those like Beth.

Beth, thank you for all you have done. You will not be forgotten.

Fuck Cancer!!!!!!

The Question

I’ve always known he’d ask.  That he’d put two and two together.  I just never imagined that it would be so soon.

Oliver and I were lying in his bed as I was snuggling him to sleep.  At one moment we were talking about his day and with no segue at all he asked me again (he asks me a lot), “Mommy, why did they have to take off your breast?” I gave him my usual answer. “There was something in my breast and if we didn’t get it out, it would have made me very sick.”

Usually, he leaves it at that, or begins to ask my questions about having the surgery, did I feel anything in the surgery, questions about my reconstruction, etc…  I always answer honestly.  But this time, tonight, he asked me the question I have always been dreading.

“Mommy, if they didn’t take away your breast, could you die?”

“Yes. But, they did take my breast and now I’m healthy again.”

I heard him breathe in and out, gently.  He took in that information.  I’m not sure how his little brain processed this because he followed it up with his usual questions. “How did they make you a new breast?” “Were you in pain?” “How long were you in pain?” “Did it make you sad? Do you feel sad now?”

After he asked me all of his questions, he very wisely said, “Wow, that was a big conversation.”

Yes.  Yes it was.

These questions…these questions I never wanted my child to have to ask.  But cancer has made us all age beyond our years

I thought that when Oliver asked me about my cancer and death, I’d feel sad.  That I would ache for him knowing that his mother had faced mortality and that he could be directly affected by this.  But that is not what I feel.  I feel proud of him.  I feel proud that he was brave enough to ask the question.  I feel proud that he is so smart and intuitive, that he could come to this conclusion himself at such a young age.  I’m proud that the weight of this conversation was not lost on him.  He totally gets it.  But I’m most proud that he feels comfortable asking me.

One of the last things I said to him before he fell asleep was, “I know that this was a big conversation.  But I want you to know that I will always tell you the truth. Is that ok?”

“Yes, mommy.”

He turned over, snuggled his back into my chest, and fell asleep.

Am I Lucky?

This week in the United States, the House pushed through a bill that would drastically reduce care for those with pre-existing conditions and substantially increase the cost of having a pre-existing condition, making it pretty much unaffordable.  A pre-existing condition can be anything from cancer to ADD, acne to autism, cerebral palsy to diabetes,  a c-section and possibly even sexual assault (although I’m now reading that this is more complicated than the bill saying that rape is a pre-existing condition, which it does not).

If this bill passes in the Senate and becomes law, it will be devastating for millions of families…millions upon millions upon millions.  There is literally no one I know, both in and out of the cancer world, who this will not negatively effect.

I want to be clear, the ACA is not perfect.  Not by a long shot.  It has a lot of problems.  While one of my friends who is on it say she is now paying less monthly for her family for better coverage, two others say that they are paying more monthly in co-pays and deductibles that they can’t even meet.  Why is this?  I’m not sure but it does seem unfair .  It needs fixing.

But it seems to me that signing the death certificate of so many who need life saving medical care is not the answer.  This bill is far from the answer.

After the new healthcare bill passed in the House, I said out loud, to myself, “Wow, I’m lucky I got cancer when I did.”  Then I suddenly stopped breathing for a moment, realizing the thought that I had just spoken out loud.  I was LUCKY to get cancer when I did?  Then, by the same token, I was lucky to have had a difficult birth experience and have a c-section when I did.

To say something like this is crazy.  Just crazy!  Because no one is lucky to get cancer…EVER!  But at the same token, I can’t help but wonder if I dodged a financial bullet.  Being on very good, employer based healthcare (something I do not take for granted and yes, I know how lucky I am) we’ve come out of the cancer experience in financial tact.  There are countless others who can not say the same thing.  I know that.  But under this new bill, if my cancer were to come back, which it can at any time,  my care could bankrupt my family.

The question I would face, and that so many others face now and will certainly face if this new bill goes through is, what is my life worth?  Is it worth bankrupting my family for a few more months?  Would people just give up the fight for the benefit of the future generations?

Why should anyone have to make this choice?  Isn’t every life precious?  Don’t we all deserve to be here for as long as possible?  Don’t we all deserve the same access to top-notch care?

This healthcare bill literally makes my stomach turn when I think about what it means for the cancer community and beyond.  And I’m more sickened that I sighed a breath of relief that I got sick when I did.  But, it’s true.  I’m lucky.  I got cancer when it seems that our government cared, even just a little bit, about whether I lived or died.

I can write a book about what I think are the long term implications on our society when we put a bill like this one into place.  But just imagine, who will be left if no one could afford life saving measures?  Only the richest few.  What would America be?  Who would we be?

Hmmm….I see a dystopian novel in my future.

In Memoriam: Jessica

Jessica Wilt, taken from her Facebook page.

Some people say that cancer is a gift.  I’ve never seen it that way.  I’ve seen it mostly as a curse.  But there are some gifts that have happened in my life because of cancer.  One of those gifts was, Jessica Wilt.

Jessica and I both work in arts education but we met through cancer.  She was diagnosed with a rare bone cancer, Ewings Sarcoma right at the time I discovered the lump in my breast.  Some of her friends had started a Crowdrise campaign to help Jessica with the costs of treatment and shared it on Facebook.  I know this sounds silly but I donated to her partially because I wanted to put out good karma into the universe.  Maybe if I did something nice for someone with cancer, that lump in my breast would turn out to be nothing.  It’s funny how the mind works to protect itself from the inevitable.

On August 1st, 2014, the day I was officially diagnosed with breast cancer, Jessica sent me a message thanking me for the donation.  I wrote back that I had just found out about my own cancer and asked if we could be friends and support each other through treatment.  That was the beginning of our friendship.

Jessica’s cancer was very different from mine and she was diagnosed just a month before me but I saw her as knowledgeable and experienced in the world of cancer.  I looked to her for guidance and example.  The first thing I noticed about Jessica was her ability to smile through the challenges and the pain.  The first picture I ever saw of her was in a hospital bed, smiling with her thumb up.  That thumb up would become her signature gesture that let cancer know it had a fight on it’s hands.  It was her warrior pose.

I think if it wasn’t for Jessica showing me, the world and cancer that you could fight with a sense of humor, with a smile and a thumbs up, my cancer experience would have been much different.  For example, when she was losing her hair due to chemo, she shared a video of it being shaved off.  It was because of her that I decided to turn the shaving of my own head into a ritual and share that very vulnerable moment on my blog for everyone to see.  When she got scan results that showed growth of her tumor, she would give that famous thumbs up and proclaim that she was not going to stop fighting.  When I was having a bad day due to treatment, I would remember this and find joy in my day.  I’m not sure I could have done this without her example.

One week ago, Jessica posted in her Facebook page that her tumor had spread to her spine and other parts of her body.  She had been in pain for quite some time and the scans finally showed why.  Her oncologists declared that her cancer was now terminal.  While this news was devastating, she was still giving that thumbs up and writing “I AM NOT GIVING UP HOPE.”  She never gave up hope.

Jessica died last night in the hospital surrounded by her family.   She endured cancer for 18 months with grace and courage.

I don’t know what a world without Jessica will be like.  But I know that it is a little bit smaller…tighter…strangely claustrophobic.  Or maybe the world is bigger, emptier with a space that can never be filled.  I’m not sure which.  Maybe it’s both.

Jessica was a dancer and believed in the power of the arts to be a movement for change.  She loved NYC and dreamed of coming back and reclaiming her life here.  She loved her family and friends fiercely.  Her community was everything to her.

Jessica, I will miss you so much.  I will miss our late night Facebook chats about cancer and life.  I will miss knowing that I had someone out there who gets it.  All of it.  I regret that I only met you in person once and that our friendship couldn’t have lasted longer.  Your spirit will always be a part of me.

Today, I had a hard day of scans.  It was awful, especially after learning you were gone.  But that’s ok.  I laid there and gave the machine a thumbs up.  And all will be well.

That time we met in Washington Heights after we both finished our final chemo infusions. We ate, drank wine and thought about the future.

All that I know is I’m breathing.

All I can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing

Now.

-Ingrid Michaelson

In Memoriam

Last night, I broke our nighttime ritual which can be dangerous with a toddler.  We usually have a bath, read books, sing a song and then go to bed.  But last night he asked if we could watch one of his favorite cartoons, Feast, before bed.  Normally that would be out of the question but I didn’t have it in me to say no.  So, we walked over to the couch, snuggled together and watched and laughed at all the parts we always laugh at.

Yesterday I found out that someone I met just one time at a party died three weeks ago.  We met at my neighbor’s son’s birthday party.  We both had cancer.  We saw each other from across the room, me with my head wrapped in a scarf, her with a simple hat on her head.  We knew instantly.  She was there with her husband and her two and a half year old son.  Her name was Christina.

We sat down and discussed what kind of cancer we had, where we were being treated, how we were handling chemo.  It was the first time I have ever felt guilty for not being sicker.  She had stage 4 gastric cancer.  She was dying.  The chemo was keeping her alive and she knew that when her body could no longer take the effects of treatment, the cancer would progress and she would die.  She thought about a year.  We were both in the middle of chemotherapy but she looked sicker to me, more tired and weaker.  It broke my heart.

Christina lit up the room that day.  She smiled and took pictures of everyone’s children on her phone, documenting every moment.  She laughed, told stories and mingled.  Christina loved her son.  She didn’t talk about it much but you could see it in her eyes when she looked at him.  He meant everything to her and she was fighting for every minute to be with him.

I often thought about Christina after we met, wondering if I should contact her, try to befriend her.  It never felt right.  I didn’t want to intrude on her time.  I felt that reaching out would be more about me.  About doing “the right thing.”

Then there is the other side of the coin.  I didn’t want to get too close to someone I knew that I was going to lose, who would make me face my mortality every time we spoke or met.

I don’t know which one is more selfish.  I don’t know which one is more selfless.  Is there ever a right answer when it comes to cancer?  Is there ever a right answer when it comes to loss?

My worst nightmare since being diagnosed with cancer has not been the treatment, the alteration of my body or missing out on life.  It has been the possibility of leaving Oliver without a mother.  What it must be like to lose a mother at such a young age, I can’t even fathom.

Alone at night, when I couldn’t sleep, I would imagine that, if I died, that he’d call out for me, look for me in rooms, wonder why I had abandoned him.  Wonder if I loved him and what he had done to deserve my leaving him.  Because children don’t always understand, not when they are so young.

Christina and her family lived and are living that nightmare.  Cancer has taken her away and that’s not ok.

I will honor Christina’s memory by giving Oliver extra kisses, snuggling for just one second more, putting my phone down more often, taking deeper breaths when he is acting out, rubbing my nose and cheeks in his curls every day and being grateful that I get to see him grow up, experience his daily changes.  I will never, ever take that for granted.

I was at a store recently and I met a woman who is a 6 year survivor of breast cancer.  She said to me that she is better because of cancer.  Today, the world is worse off because of it.  How can cancer be good when it brings pain, breaks up families, leaves children without their mommies?  This point of view, I will never understand.  Especially today.

Christina, I will never forget you.