Saturday, October 7, 2017

Living Well

Beyond the treatments, beyond the worry and soothing the frazzled nerves of concerned loved ones, there is one vital thing that must never be forgotten: You.

Day 7
Living Well

It is so easy to get swallowed up in the vortex of your disease when it seems all you do is go to the doctor, get a treatment, come home and recover just in time to return for another one. Like a sleep walker you go through the motions of life.  It is too hard not to. Denial can be very soothing at times like these and if it helps, it is okay to keep your true feelings at bay until you have time to throttle back and let your real life begin again.

You may find that while you are making sure all your cancer T's are crossed and I's are dotted you ignore yourself. Make the time to care for yourself. What does this mean? Pretend you are your young self at age 5 and adult you is in charge of the well-being of that beautiful little five year old.

First, you make sure she is safe, then you do the simple things for her that keep her healthy.

Feed her nourishing food -the kind of food that heals and helps her grow.

Make sure she gets enough restorative sleep. You put her to bed at the same time every night and if she needs a nap during the day, make sure she takes it.

Find a way to give her joy. Do things that lighten the day, take in a good movie, go outside and play. Be a part of the natural world around you. Great peace can be found in nature.

Run, walk, ride a bike, swim, plant flowers - give her exercise outdoors where the air is clear and the proof that life renews itself over and over again surrounds you.

Let her be sad. If she is sad, let her mourn. Allow her to feel what she has to feel and hold her tight until things don't look quite as bad as they seemed.

Keep her away from people who will harm her - not harm her physically, but emotionally. Negative people can do as much damage as physical harm. Stay in the light with the true friends and famiy who really care.

This little girl is you, remember? When you want to deny yourself this self-care, think of it as denying caring for a child in your charge. It is this combination of self reliance and self love that makes you stronger, braver and healthier. Don't wait for someone else to make you feel better because they may never come or if they do, they don't understand what you are going through.

You have more strength than you know. It is inside you. You just have to let yourself discover it.

Wednesday, October 4, 2017

Tidal Wave

As if it was not bad enough to be diagnosed with cancer, I had to be diagnosed a few weeks before Pink Hell Month. And that is what it is.  (If you are a Pink-er, you should probably stop reading now.)

Day 3
Pink Hell Tidal Wave

Imagine this: A man is diagnosed with prostate cancer. He is told he has to have a radical prostatectomy and is facing chemotherapy and radiation to a very sensitive part of his body. Rather than his friends and family coming around to support and comfort him with promises of helping him get through it, they visit him with teddy bears and ribbons and pink underpants. We would never treat a man that way. We would treat him as a man with a life threatening disease not an E-Ticket to Pink Cancerland.

I was inundated with sappy, smiling stuffed animals soaked in pink dye, their sad eyes looking back at me as if to say, please don't rip my head off before you throw me away. I was given pink angel statues... a promise of what was to become of me? Dying and becoming an angel - a pink one no less? Then came the ribbons. Polyester, cotton even vinyl to put on my car. Pink ribbon necklaces, earrings, bracelets and my favorite- the pink ribbon hair accessories.  Those come in handy when you have no hair from chemo.

Why have we permitted ourselves to be infantilized into pretty little pink girls with a frilly little illness that will be made better as long as we have something pink attached to us? We are patted on the head and are considered a bunch of children and heaven forbid we open up our mouths and scream "WTF!" If we don't march in the pink parade and show we are part of the pink team then we are considered "negative" and as any pink expert will tell you, only people with a positive attitude survive.

Some of the most positive women I have ever encountered in my life succumbed to this disease.  And yes- despite what you may think as the tidal wave of pink washes over you this month, no, we are not all OK. Women die from this disease. No amount of pink will save them. There is actually a belief out there that breast cancer is pretty much under control now and no one dies from it anymore because of everyone is so happy at all the pink celebrations. They couldn't be more wrong. And that is what is killing us because that may translate into less research money being donated to the only thing we need to be supporting: RESEARCH.

Every October my No Surrender inbox is inundated with PR companies pushing pink merchandise "for awareness."  They all start the same way: "Dear Gina, As you may or may not know, October is Breast Cancer Awareness Month, and we would like you to feature our pink hair tie, spatula, hammer, lug nuts, tape dispensers, tissue boxes, wet wipes, toilet paper, etc. so that the women who read your site would buy them so they, too, can become AWARE of breast cancer!" 

How in hell does a pink spatula make you aware of breast cancer? Newsflash: WE ARE AWARE.  We don't need your pink shit  - we need a CURE.

That is all we want. 

To every corporation, CEO and marketing team who hijacks our disease - our life threatening, horrible disease- to increase your sales and then offers some obscure "promise" that a portion of a percentage of every pink piece of crap sold will go toward awareness: STOP IT. I am not the only one who is on to you. We are mad. And we don't buy your products because of the way you are using us. There are over 2 million breast cancer survivors walking around in the US today.  Soon, we hope they will all say no to you.

You don't make us feel better. You don't increase awareness. You don't do anything but line your own pockets and devalue the mighty battle we wage every single day.

Please join me, dear reader. If you see something pink this month please don't support the corporate hijackers who benefit from our disease. Give to research instead. Have a dinner delivered to someone recovering from cancer surgery. Anything, but Please Don't Pink.


Tuesday, October 3, 2017

Gates of Hell

Tom Petty died last night. He was a poet, a performer, and without knowing it, a provider of the strength  we needed to stand up to the gates of hell and not back down.

"I won't back down. No, I won't back down..."

Day 2 

It is hard to tell which is worse, the fear of chemo or actually doing chemo. It turns out that years later, if you survive your cancer, chemo will stay with you forever. But you have to do it if you want to live. That is what I was told. I am grateful for the poison that killed off as many runaway cancer cells that it could find.

The first time I did chemotherapy I was so scared. I sat in the waiting room waiting to be taken in for my treatment and worked myself up into such anxiety that I got up to leave the waiting room. The oncologist's receptionist had to stop me. She tried to calm me. They put me in an exam room that was harder to escape from and my oncologist came in to tell me I had nothing to worry about. 

When they walked me into the room of beige Barco Loungers occupied by fellow patients, it dawned on me that if I sat in that chair it  really made me one of them -  a cancer patient. I didn't want to be a cancer patient! Maybe the tests were wrong and there has been some horrible mistake. (I still wait for that call in my dreams.)  I should be at lunch somewhere or on a beach or ironing - anything but becoming an official cancer patient with chemotherapy being pumped into my blood.

The needle went in and the drip started. The bag had every warning you can imaging on it: "Avoid Contact"- "Hazardous Material" - "Wear Gloves" and they were putting it directly into my vein. At first I thought I would get sick immediately, right there in the chair. But that didn't happen. It happened when I got home. Please note: This was in 2001/2002 and was before the invention of many of the anti-nausea drugs they have available today.  But, back then, I would drive myself home and get ready for three days of hell. Unrelenting hell. I had to do it for the next 6 months.

The second time I got breast cancer, in the opposite breast, I had a year of chemo. The drugs were better then to help ease the side effects - the immediate side effects. Cardio-toxicity is one that cannot be avoided with some chemotherapy drugs. Neuropathy, memory loss, vertigo, loss of fertility, weight gain, high cholesterol and sudden menopause, are just some of the other side effects that will last forever. Your hair does grow back. Eventually.  For me, so far, the number one side effect of the nine different chemotherapy drugs I did has been that they worked and I am glad I did them.

As bad as my first chemo experience was, when the cancer made its second appearance, I was mad and ready to fight it. I was furious it came back. I wanted my oncologist to give me everything he had. And I had Tom Petty by my side. 

"You can stand me up to the gates of hell and I won't back down."

Back at No Surrender, the NS women were in all phases of treatment and we supported each other cheering them on, giving them strength and pushing them to not back down. Tom gave us our soundtrack.  He was speaking what we were thinking, "You don't know what it means to be me."

We gained so much power thanks to his music. We will still encourage all of the newly diagnosed to not back down. 

Thank you, Tom. From all of us.

Monday, October 2, 2017

Real: Day 1

(It's that time. That horrible time when women trying to manage their fear, pain, heartache and confusion get swallowed up by an orgiastic marketing stampede of corporate hijackers stealing a precious month from their lives. This year, I am going to take you through a month of breast cancer. This is not for "awareness" or to raise money. It is to calm the soul of all of you who are not only aware, but are fighting the good fight. No Surrender was originally founded for you and will always be here beyond the sea of pink balloons and empty promises.  What we do is get you through your breast cancer. Whether you have just been diagnosed, are in the middle of chemo, completed with treatments or fighting metastatic disease - we don't discriminate. We are all one. We are real. We are you.)

Day 1

Getting the News

Some people are fortunate and have families who accompany them to that appointment. The appointment where the doctor has to see you with your results after your biopsy. It is akin to waiting for word from the governor at the last minute to commute your sentence.

For me, I was alone. My doctor's office called and the nurse asked me if I could come in to speak to the doctor - in person. I asked if I could just speak to him on the phone. She hesitated again and firmly answered, "No. You have to come in. How is 5:30 after office hours?"

I know I should have realized it then but I was still holding out hope. I only had about a half hour to get ready. I remember walking through the rooms of my house trying to figure out what to wear. At the last moment, I grabbed a pad and a pen.  I drove over to his office. The parking lot was empty and it was easy to find a spot to park. I distinctly remember walking inside the office building and pressing the elevator button, the smell of the elevator, the whoosh sound of the doors closing and the gentle nudge as it started to move. I remember it as if I were standing there right at this moment. I remember the carpeting...seeing stains where there had been a small water leak... a slight peeling corner of wallpaper by the metal door to his office. This walk is so vivid in my memory because it was the last walk I would ever take as a "civilian." Every step after belonged to a different person who was no longer the person who parked her car in the empty lot. I would never be "me" again.  There is a sadness and longing there,  when I let my mind travel back the day that changed me forever.

I was ushered right in and I sat across from my doctor. He knew me well. He must have thought I had figured it out by now. The truth is, I hadn't. I couldn't dare let myself think the worst. Nevertheless, he seemed to think I knew because of the face to face meeting.

He had my chart on his desk with my test results inside. He turned to grab a booklet from the table behind his desk and as he did he said, "Let me tell you about your cancer."  I don't really know what the next few things were that he said. All I heard was "your cancer"  - my cancer. It now belonged to me. It now was me. As if waking from a deep sleep the volume increased and I could hear him again - there was something about a "very aggressive" cancer. Then I heard it did not respond to estrogen or progesterone and that was bad. "Immediate surgery." "Pre-Authorization." "Hospital." "Lymph nodes." "Oncologist." "Chemotherapy." "Survival rate."

The next thing he did was hand me booklets from the American Cancer Society and our local hospital and a yellow sticky note with the title of a book by Dr. Susan Love. And that was it.

I went back into the elevator, I suppose, but I don't remember leaving. I don't remember how I got home. But I did. And for every subsequent appointment, surgery, chemo treatment and radiation treatment I managed to get myself there and back home again. But that is jumping ahead of the story of Day 1.

I do remember calling my family and telling them. The most meaningful call was to my older brother who had been ill himself. He was open to talk about death. He half-joked of his own and made me "a bet" that he would die before I would. He went there and it was strangely comforting. With the other members of my family,  I felt I had to apologize for having cancer. As I was telling them this terrifying news about myself I did it by letting them know it was all fine and everything would be okay. I was speaking the words I wish I would hear. But with my brother, I could be myself. There was no need for apologies. We both shared a raw understanding of the fear of the true unknown.  I wish I had more time with him, but he died four months later. 

This was just the beginning. I had no idea whatsoever what was to come next, or what was to become of me, or that I would hear those words again. But I will never forget how I felt: lost and alone. These feelings led to the formation of No Surrender. I didn't know it then. That would come in a few days when I gained my strength and courage. I had another appointment with a doctor in Manhattan five days after the verdict. The appointment was for 9 AM on Tuesday, September 11, 2001. That day No Surrender was born. My self pitying self disappeared when I looked at the pile of smoke that was downtown Manhattan. I realized that the world is much bigger than my problems. And most importantly, the people in the buildings didn't have a chance to fight to survive, but I did. Driving home, seeing all the volunteer fire departments, contractors and earth movers traveling into the danger to help however and whomever they could, made me want to be that person for all the newly diagnosed women out there. Women just like me.

Tuesday, March 22, 2016

Updates on the Research Front

There has been quite a bit of new information on the treatment of Triple Negative Breast Cancer.
We update frequently here on the blog, but new information can also be found on our website.

Today we welcome you to read about the following on our Triple Negative News Page HERE

What will you find?

Beta Blockers have been found to help chemotherapy be more effective when treating Triple Negative tumors

The Growing Role of Checkpoint Inhibitors in Metastatic TNBC Tumors

Non-Invasive Liquid Biopsy can find TNBC tumors sooner- Clinical Trial Taking New Patients

We are always here to help you. Researchers are encouraged to contact us with news of their work.