Pinktober Guest Post: By me!

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is a slightly modified version of a post I wrote at the beginning of this year. If you want to know a little more about me, please take click the link. If you want to make me smile (she solicited shamelessly) please follow this blog and like my Facebook page.

30 percentI live in Israel. According to the Israeli Ministry of Health, about one in eight women in this country will be diagnosed with breast cancer during their lives. Medical sources agree that although only about 6% of breast cancer is metastatic at first diagnosis, close to thirty percent of all breast cancers, including those detected early, will metastasize.

Thirty percent.

My breast cancer was self-detected and them confirmed on my first ever mammography. There was already lymph node involvement and the question of distant mets was raised and dismissed. The primary tumor was about as long as my thumb. All the factors together put the staging at IIB or IIIA. Within a year, metastasis was diagnosed – in my case, to the spine.

Practically speaking, this means that I will never be healthy again. While people can live for several years with bone mets (the most common site of breast cancer metastasis), life will never be the same. Life is never the same for anyone who has lived through a “cancer event”, but for those of us with metastatic cancer it means living with increasingly severe pain and the side effects of pain relieving drugs, with increasing fatigue and the attendant frustration. It means living from treatment to treatment, and a narrowing of one’s sphere of activity and social circle. It means coming to terms with one’s mortality in a very immediate way, while helping loved ones do the same.

These are some of the commonalities among people living with metastatic cancer. But we are still individuals right up to the end. We each have our own personality, coping techniques, level of insight, hobbies, loves, fears. We still have preferences for how to live our remaining time. Some of us strive for continuous positive thinking, some become social or politically active. Some of us reach out to others, and some prefer to be alone. Some are indescribably sad; others seethe with rage. Many of us are all of these things at different times.

I wrote the original version of this post on an iPad while resting in bed. The weather was nice and I wanted to go outside to try to repair some of the ravages that recent storms visited on my garden, but I was exhausted after ten minutes. Some days I don’t even get dressed because I know I’ll be spending most of the day in bed, but on other days I call a friend who takes me on short walks in the neighborhood. Metastatic cancer is helping me learn to be more flexible and to adjust my expectations.

I can’t say I am exactly the same woman I was before the cancer, but I don’t think I’ve changed all that much in some ways. I still prefer to avoid confrontation, and I still use humor as my primary defense mechanism. I still love poetry and novels and movies about people and feelings. I am still fascinated by the “people side” of history,  am still more of a process person than a goal-oriented one, and I am still competitive. (Lexulous, anyone?)

While I was in bed writing this post back in January, the man who helped me by cleaning my house accidentally bumped my bed and the jarring caused me pain. “I hate being like this,” I found myself yelling and then I felt ashamed of myself for “breaking down” in front of him.

He looked at me with kindness and a little smile. “I know,” he said in a broken combination of Hebrew and English. (He is Hungarian and speaks neither language easily.) “For you, this is very difficult. You are a very strong person,” he made a fist. Then he held his arms out in front of him, palms up, and swept them wide open. “And you love life, living,” he said.  “It is very hard for you.”

Yes and yes.

Addendum, October 2013. When I wrote this post, I was still refusing narcotic pain relief. Ten months later, I am taking it–not as often as my doctor would like, but more often than I want to. Almost daily now, in fact, even though I’m pretty good at dealing with pain due to many injuries in childhood and multiple orthopedic surgeries as an adult.

In the intervening months I’ve had to stop working in my primary profession. I’m grateful that I have a second skill that allows me to work at home, as I’m able. My sweet Hungarian helper had to quit because of back trouble, but we’re still in touch. I have a wonderful new helper now.

I’m going through a hard patch right now, physically and emotionally, due to cancer and other things. I’m very grateful that I have a profound knowledge that the only constant in life is change.

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Pinktober Guestpost: Bonnie Suter

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

This next guest post is by Bonnie Suter. Bonnie is 47 years old and has been married for 24 years.  She has two sons; the18 year old is at Seton Hall University, and the16 year old is a junior high school. She is an avid tennis player.  Bonnie was diagnosed in October 2011 with Her2 +++ stage 4 breast cancer.  Please follow her at www.caringbridge.org/visit/bonniesuter. Let’s give Bonnie some comment love!

Image credit: diego_cervo / 123RF Stock Photo

Image credit: diego_cervo / 123RF Stock Photo. Used with permission.

My name is Bonnie Suter and I was diagnosed with Stage 4 Metastatic Breast Cancer Her2 triple positive on October 13, 2011- yes – on National Metastatic Breast Cancer Day.

I had a clean mammogram 2 years prior.  My symptoms began in June 2011, as my back was killing me, and it was affecting my tennis game.  By August, I started going to the chiropractor.  After 2 months he told me that I was not getting any better and I needed to go to the Dr. and have blood work drawn.  My reply, “Why, do you think I have cancer?”  which of course I was joking.  I always look back at how I said these fateful words.  I went to the Dr. on Friday and had mammogram and ultrasound.  Had biopsy on Monday.  Was told on Tuesday I had cancer.  Had pet scans on Wednesday.  Met with doctors on Thursday and was told I had 2 years to live. 

I can’t wait to celebrate on October 14th 2013!   I will no longer be part of the 2 year life expectancy statistic! 

I was diagnosed at the beginning with mets to my spine, liver, 4 nodules and right breast.  I had so many tumors they could not count them all.  At this point I had trouble walking as my pain in my back would make my entire body seize up.

My treatment plan:

October 2011- Diagnosed and 5 day radiation treatment to my back.  Started Abraxane/Herceptin/Xgeva.

April 2012- Right Masectomy

July 2012- Abraxane no longer working- started Tamoxifen.

September 2012- Tamoxifin- Not working. Switched Dr/Hospital.  Enrolled in TDM1 clinical trial.  New mets found in the pre-trial MRI/Pet scan- 11 brain mets, 1 tumor in right lung, and 5 fractured vertebrae.

October 2012- Whole Brain Radiation (by April down to 2), started TDM1- amazing results- all liver tumors gone, most spine tumors gone or shrunk considerably.

August 2013- TDM1 no longer working and up to 4 brain tumors.

September 2013- Tykerb, Xelota, Herceptin, Xgeva.  When these stop working I will move on to the next drug.

I am 47 years old, married, and have 18 & 16 year old sons.  I continue to play tennis twice a week, and be active even though I have 4 fractured vertebrae that have not healed.  I go to acupuncture for my pain—this really works! 

I plan to be part of the AMAZING, STRONG women across this country that fight stage 4 metastatic breast cancer each and every day… and we will make a new statistic of our “life expectancy”.  

My strongest advice is to make sure you find a doctor that believes in you, that always has your best interest at heart, that is looking for new ways for you to survive!!!!  Always have a voice in your treatment plan.  If your doctor does not make you feel at ease and listen to your input- find another doctor!

LET’S INSPIRE WOMEN TO LIVE!!

Pinktober Guest Post: Katherine O’Brien

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am going to be running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

This post is by Katherine O’Brien. Katherine has been living with metastatic breast cancer since 2009. In addition to editing a trade magazine for commercial printers she blogs at I Hate Breast Cancer. Please give her some comment love, and don’t forget to visit her blog!

Katherine O'BrienI am the youngest of seven siblings—as you might guess, I grew up in a big Irish Catholic family. My mom converted to Catholicism prior to meeting my father. Her family was Jewish but not very religious. Although my mom was very funny, she was quiet and almost never spoke about herself.  (I’ve told Mom’s  story here.)

When I was 15, my mom was diagnosed with inflammatory breast cancer. This was in 1981 so there was no Internet and very little information or support for patients. I remember the American Cancer Society volunteer came to our house with a foob after my mom’s mastectomy. But the Komen organization wasn’t launched until 1982, so this was about a decade before Breast Cancer Awareness Month achieved its massive place in the public consciousness, thanks largely to SELF magazine.

My mom died in 1983, a few weeks after my high school graduation.  I can’t recall the treatments she had—I know she had radiation and chemo and sometimes she was hospitalized to get chemo. Treatments in those days were truly brutal. The drugs we are given today are no less toxic, I would guess the difference is anti-emetics have improved.

Sadly outcomes really haven’t. The number of US  women and men who die each year of breast cancer is still approximately 40,000—a number that has not changed much in the last 20 years.

Prior to my own diagnosis in 2009, I never participated in a breast cancer walk—I don’t recall going out of my way to buy pink ribbon merchandise, either.  If I felt anything, it was resentment—my mom died at 53. Seeing the joyous marchers with their wacky pink outfits didn’t inspire me. It made me think of a disease I had pushed far from my mind and all of the things it had taken from me.

I assumed all of the breast cancer awareness groups were one entity. I didn’t realize there was Komen, Avon, Y-Me (now defunct) and other groups. I also was confident I wouldn’t get breast cancer.

I also assumed my mom’s cancer had something to do with having her children later in life. I somehow DID know that people of Ashkenazi Jewish descent are at a higher risk for breast and ovarian cancers, but I reasoned that since most cancer isn’t hereditary, my mom’s probably wasn’t.  Also—given that my breasts had the general contours of two eggs, sunny side up, I figured I was safe. How could I get breast cancer? I hardly had any breasts.

I was “too busy” to get a mammogram at age 40. The truth is that I was probably afraid to go.  I finally went at age 43…I didn’t have any symptoms or anything.

Eventually I was sent for a battery of tests in preparation for a mastectomy. During one of these, a bone scan, it was found my breast cancer had escaped my breast and set up a small presence in my spine.

My cancer has remained under fairly good control. People can do well for a long time with bone-only disease.  I was on tamoxifen for two years and am currently on Femara.  Although it’s not standard of care, in some cases doctors believe surgery can be beneficial, so I had a unilateral mastectomy two years ago.

My cancer isn’t considered hereditary—I’m not a carrier of the BRCA1 or BRCA2 mutations.  My disease is ER/PR+ and HER2-. This is the most common of the three known breast cancer subtypes. Each has different signaling pathways and growth factors.  Thus, survival rates vary significantly among patients.

For one of the subtypes, triple negative metastatic breast cancer, there is no identified targeted therapy that attacks only the cancer cells.  For patients with this type of breast cancer, chemotherapy helps the disease, but patients must live with cytotoxic side effects that impact quality of life.  And, for metastatic breast cancer patients, treatment never ends.

When I was first diagnosed, I was angry about Breast Cancer Awareness Month. Volunteering with the Metastatic Breast Cancer Network (http://www.mbcn.org) has helped me channel my energies in a different, more positive direction. We just conducted our annual conference—we want people to know that they are not alone in dealing with this disease. In telling our stories, we hope to achieve better outcomes in the clinic.

National Metastatic Breast Cancer Awareness Day is October 13. Here are 13 Things Everyone Should Know About Metastatic Breast Cancer.

Cancer Is Not Cute, or Why Pinktober Makes Me Queasy

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

(The following post appeared in a slightly different form on April 6, 2013.)

 Cancer isn’t cute. It is a mortal illness. It disfigures. It kills. The treatment involves cutting off pieces of your body, killing living tissue with radiation, poisoning your system with chemotherapy. The treatment can have life-long effects on your health and well-being   And that is still no guarantee. Thirty percent (almost one third!) of women diagnosed with breast cancer AT ANY STAGE will end up with distal metastasis.

To be clear, distal metastasis means Stage IV breast cancer. Stage IV breast cancer is terminal cancer.

Cancer isn’t cute, and breast cancer isn’t “the good cancer”. How can anyone possibly call a disease that kills almost one-third of the people who become ill with it “good”? This isn’t about boobies or tatas—it’s about a killer disease. When I was first diagnosed I didn’t give two toots about saving my “girls”; I wanted the cancer out of me.

When I was first diagnosed, I experienced and conceptualized the cancer as a rapist inside me. GET THIS THING OUT OF ME! There was nothing cute about it. When I had my breast and lymph nodes removed and sat with surgical drains coming out of the incisions and I couldn’t lift my arm high enough to hang up the laundry, there was nothing cute about it. When I was having my first round of chemotherapy and all I could vomit was bile and I could barely hold down water – there was nothing cute about it. When I had first and second degree radiation burns over two-thirds of my chest from the daily radiation treatments – not cute.

Well-meaning as they may be, pink ribbons and cutesy “awareness” campaigns make me angry. To me, they feel belittling. They make me feel ignored. They make me feel cast aside because I have a a disease that is killing me. Go ahead and have a great fund-raising campaign and use the best PR tricks you can, but please don’t ignore the reality. Cancer isn’t cute, not even at Stage I. It bears repeating: thirty percent (almost one third!) of women diagnosed with breast cancer will end up with distal metastasis.

We don’t know who will belong to the 30% and we don’t know how to reduce the number of people who will get recurrences and/or mets. Yes, awareness is nice, but research is better. If you donate to a breast cancer cause, please know where your money is going. Give to organizations that are actively funding research. You can always buy a pink ribbon at the notions counter.

This month I will be featuring guest posts from men and women who have been affected by metastatic breast cancer. There are still open slots. If you’re interested, please read the Call for Posts.

Voices of the 30%

30Here’s an idea.

I’m wondering if anyone else would be interested in a blog by and for people affected by Stage IV breast cancer. My vision is that a core group of two or three (more if interested) people would commit to writing one post a week and manage the blog together.

In my vision, the blog would be a venue for both “30-percenters” and their loved ones and carers. It would be a place for talking about feelings, challenges, successes, but also for sharing information (reliable, verified information) about treatment, activities of daily living, and anything else that affects us.

What do you think? Does this sound like a good idea? It’s okay if it doesn’t. It wouldn’t be the first time in my life that I get carried away. But if it does sound like a good idea, please share in the comments how you see such a blog. If you would like to be personally involved, please write me at the address under “Contact Me” in the sidebar.

Cancer isn’t cute!

This kitten is cute. Cancer is not.

This kitten is cute. Cancer is not.

Cancer isn’t cute. It isn’t big smiles and noses crinkled in mirth. It is a mortal illness. It disfigures. It kills. The treatment involves cutting off pieces of your body, killing living tissue with radiation, poisoning your system with chemotherapy. The treatment can have life-long effects on your health and well-being   And that is still no guarantee. Thirty percent (almost one third!) of women diagnosed with breast cancer AT ANY STAGE will end up with distal metastasis.

To be clear, distal metastasis means Stage IV cancer. Stage IV cancer is terminal cancer.

Cancer isn’t cute, and breast cancer isn’t “the good cancer”. How can anyone possibly call a disease that kills almost one-third of the people who become ill with it “good”? This isn’t about boobies or tatas—it’s about a killer disease. When I was first diagnosed I didn’t give two toots about saving my “girls”; I wanted the cancer out of me.

When I was first diagnosed, I experienced and conceptualized the cancer as a rapist inside me. GET THIS THING OUT OF ME! There was nothing cute about it.

When I had my breast and lymph nodes removed and sat with surgical drains coming out of the incisions and I couldn’t lift my arm high enough to hang up the laundry, there was nothing cute about it. When I was having my first round of chemotherapy and all I could vomit was bile and I could barely hold down water – there was nothing cute about it. When I had radiation burns over two-thirds of my chest from the daily radiation treatments – not cute.

The rapist is still inside me. I have not learned to like him, but I am learning to live with him because I want whatever time is left to me to be as pleasant and productive as I can make it. I do not want to waste precious time and energy on howling at the moon. That doesn’t mean I’m not angry; it means I can accept my emotions and move on.

Well-meaning as they may be, pink ribbons and cutesy “awareness” campaigns make me angry. To me, they feel belittling. They make me feel ignored. They make me feel cast aside because I have a a disease that is killing me. Go ahead and have a great fund-raising campaign and use the best PR tricks you can, but please don’t ignore the reality.

Cancer isn’t cute, not even tiny little Stage I tumors. It bears repeating: thirty percent (almost one third!) of women diagnosed with breast cancer AT ANY STAGE will end up with distal metastasis.

I am one of the 30%. Awareness is nice; research is better. If you donate to a breast cancer cause, know where your money is going. Give to organizations that are actively funding research. You can always buy a pink ribbon at the notions counter.

Note: This post is based on a comment I made on the Facebook page Breast Cancer Awareness. I’d like to thank Scorchy Barrington, author of The Sarcastic Boob, for bringing it to my attention.

I am one of the 30%.

30 percentAccording to the Israeli Ministry of Health, about one in eight Jewish women in this country will be diagnosed with breast cancer during their lives. The figure has traditionally been a little lower for Palestinian and Arab-Israeli women but their numbers have been rising and are approaching the same levels. Medical sources agree that although only about 6% of breast cancer is metastatic at first diagnosis, close to thirty percent of all breast cancers, including those detected early, will metastasize.

Thirty percent.

My breast cancer was self-detected and them confirmed on my first ever mammography. There was already lymph node involvement and a question of distant mets. The primary tumor was about as long as my thumb. All the factors together put the staging at IIB or IIIA. It wasn’t long afterwards that distant metastasis was diagnosed – in my case, to my spine.

Practically speaking, this means that I will never be healthy again. While people can live for several years with bone mets (the most common site of breast cancer metastasis), life will never be the same. Life is never the same for anyone who has lived through a “cancer event”, but for those of us with metastatic cancer it means living with increasingly severe pain and the attendant side effects of pain relieving drugs, with increasing fatigue and the attendant frustration. It means living from treatment to treatment, and a narrowing of one’s sphere of activity and social circle. It means coming to terms with one’s mortality in a very immediate way, while helping loved ones do the same.

These are some of the commonalities among people living with metastatic cancer. But we are still individuals right up to the end. We each have our own personality, coping techniques, level of insight, hobbies, loves, fears. We still have preferences for how to live our remaining time. Some of us strive for continuous positive thinking, some become social or politically active. Some of us reach out to others, and some prefer to be alone. Some are indescribably sad; others seethe with rage. Many of us are all of these things at different times.

I am writing this post on an iPad while resting in bed. The weather was nice today and I wanted to go outside to try to repair some of the ravages that recent storms visited on my garden, but I was exhausted after ten minutes. Some days I don’t even get dressed because I know I’ll be spending most of the day in bed, but on other days I call a friend who takes me on short walks in the neighborhood. Metastatic cancer is helping me learn to be more flexible and to adjust my expectations.

I can’t say I am exactly the same woman I was before the cancer, but I don’t think I’ve changed all that much in some ways. I still prefer to avoid confrontation, and I still use humor as my primary defense mechanism. I still love poetry and novels and movies about people and feelings. I am still fascinated by the “people-side” of history,  still more of a process person than a goal-oriented one, and I am still competitive. (Words with Friends, anyone?)

So here I am in bed, struggling with the WordPress mobile interface (Grrr…). The person who helps me with cleaning accidentally bumped my bed and the jarring caused me pain. “I hate being like this,” I found myself yelling and I felt ashamed of myself for “breaking down” in front of the cleaner.

He looked at me with kindness and a little smile. “I know,” he said in a broken combination of Hebrew and English. “For you, this is very difficult. You are a very strong person,” he made a fist, ” and you love life and living.” He held his arms out in front of him, palms up,  and swept them wide open. “It is very hard for you.”

Yes and yes.