Barbara: Learning How to Accept and Live with the Unacceptable

June 24, 2015

In 2002, Barbara Bigelow was diagnosed with Stage II breast cancer. She was 44 years old and had a strong family history: Her two older sisters also had been diagnosed with breast cancer.

Barbara spent 2002 in treatment: She had a lumpectomy, sentinel node biopsy, ancillary node dissection, chemotherapy with AC for 6 rounds and 7 weeks of radiation. Shortly after Barb finished treatment, her sister Mary died–just  six weeks after Mary’s metastatic breast cancer recurrence was discovered.

Barbara’s cancer diagnosis coupled with Mary’s Stage IV experience prompted Barbara to take an aggressive approach to her treatment.  She  had her ovaries and fallopian tubes removed as well as a bilateral mastectomy with DIEP reconstruction. The latter  was major surgery–a 16-hour procedure to remove both breasts and transplant abdominal fat to create new breasts. Revision surgery to create “nipples”  followed three months later as did  yet another surgery and tattooing. 

Barbara then took an aromatease inhibitor (AI) for 10 years as her doctor recommended. She had been off the AI for two years when she learned her cancer had returned.  Here’s Barbara’s story in her own words.

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Barbara Bigelow learned she had metastatic breast cancer in March 2015.

I have been married to the love of my life, Tim, for almost 32 years and we have two beautiful daughters, Kelsey (25) and Bridget (24). We live in the Boston area.

I must admit that when I hit the ten-year post-diagnosis mark, I felt  distanced and more detached from the breast cancer community–I sort of put it behind me although the threat was always there, lurking in my head. It never completely goes away and my doctor never told me I was cured.

I woke up March 11, 2015 in a pile of rubble. This time my treatment team had shrunk to my elderly oncologist and his NP. Gone is the cavalry, leaving me standing alone as a treatment failure. I feel like I have somehow pissed my doc off for not staying in remission. This is compounded by the very real and very sad realization that women with recurrence like me are not a priority. We are no longer curable, people whose  pink ribbon flying days are behind them. Too dark? Yup, I get it.

Given my family history, some people have wondered if I am a carrier for the BRCA-1 or BRCA-2 mutations. I’m not–and neither are my sisters.

Others are curious how can I have breast cancer even though I no longer have “real” breasts. Good question!

Cancer is an unforgiving master that can travel, hide and mutate as it finds somewhere else in the body to take up shop–in the same spot as before, in the tissue next to the original spot, or in my case, a distant location.  BC commonly metastasizes to the bone, liver, lung and/or brain.

I must be special–my cancer  decided to pitch its tent under my right kidney, marshal and enlarge the troops until it was ready to take the hill in the form of a tumor.  I have a 3 cm solid mass in the retroperitoneum obstructing the right kidney which is now non-functioning—there is no hope of any appreciable recovery of renal functioning in that kidney. My left kidney is doing all the work.

My metastatic breast cancer diagnosis came as quite a surprise…it followed an MRI for back pain due to my spinal stenosis. If I hadn’t had that MRI, I would never have learned about the mets.

My pathology report confirmed this isn’t a new primary cancer–this is the same breast cancer subtype I had with my first diagnosis. When cancer spreads beyond the breast it is treatable but no longer curable.  I am not going to win this fight, but hopefully I will respond to treatment and win a few battles and skirmishes. I will try different treatments until the cancer figures out how to outsmart it and becomes resistant–then it’s on to another treatment–hopefully my cancer can be controlled for some good long stretches.

This time, I am blogging my experiences.  Why am I doing this? Thirteen years ago, blogging was not yet a thing and we had to e-mail interested people and it was hard. Now I can blog and create a permanent record for my kids. At this point it is easier for me to write my thoughts than it is to read a book–my concentration is shot and blogging helps me process and organize my thoughts.

As for my family– People ask me how they are doing—don’t ask me, ask them, I can’t presume to speak for them and no one really wants to hear what two sisters whisper to each other when they climb into bed together to watch TV or my husband’s anguish at a 3:00 AM panic attack. Yeah, there is that–I am composed on the outside by nature and profession but on the inside I am as dazed, confused and panicked as the next person. Anxiety has lived in me for 13 years and isn’t leaving any time soon.

I have been in denial about my cancer re-occurrence. I have buried my head in the sand, looked for every distraction and pretended it was an epic joke that the universe was playing out.

How could this really be happening to me? I can talk about it, discuss it in-depth even, but I really haven’t slowed down enough to actually feel it. It has been a lot easier to think about and question the quality of care I have been receiving from my grumpy elderly doctor than to look at myself. To get unstuck. To move forward. To feel.

The call  came at the right moment if there ever is a right moment in the cancer universe. Time for a second opinion and a new attitude. The woman on the other end of the receiver said,  “This is where you need to be, we don’t do anything but cancer and it’s a whole different ball game here.” I needed to hear that.  It’s been lonely here in the dark, not feeling like a medical team was on the case, looking out for me.

It’s hard– to transition away from the people and place that have taken care of me for so long and take the giant leap into the unknown. It just means a lot of anxiety all around even though I know intellectually this is right. It is, for me, life or death. I have to pick up my sticks, buckle in and launch into my future, whatever that is.

First we muddled our way through my former treatment center to pick up the CDs of all my scans, head to Dana Farber registration and sign many forms including my health proxy—good luck Tim, I wish you the best on that.

My new doctor is lovely. Soothing, reassuring and most of all, positive. She rubbed my back, touched my hand, listened hard, answered all our questions and for the first time, we both felt a sense of hopefulness and optimism. This is where I need to be.

She said she hoped for a long and winding road with me–of course there will be bumps but hopefully I won’t fall off a sharp corner. She wrote blood work orders, took me on as “hers”, promised to do her homework–getting my actual tissue samples from my prior oncologist. She spent a lot of time with us. It was good. Treatment stays the same for now–Pablocyclib and Letrozole. Blood counts headed south but not bad yet.

My new doctor has renewed my hope that there is a space between my present and my future–time to breathe, catch up, and get organized. Despite only 7% of money raised for breast cancer research being spent on MBC and no change in the MBC stats in 20 years, I still don’t think it’s over. For me.

I am only on my first treatment. And, now that I am well into my 3rd cycle of chemo, I feel pretty good. Actually I feel more like myself than I have since February. I’ll take it! I do not plan on going anywhere without a battle and I am determined to drag myself through the door to my future.

I will have a PET scan at the end of June. Will it be a big day? Yes, but I believe in my oncologist and the chemotherapy drugs and mostly, I believe in me.

Why is it so much harder this time? Last time around I was 13 years younger and did not yet have arthritis and spinal stenosis and menopause to get through. I had young kids that needed attention. My parents were still here and they were two more anchors to help me to get on with, and over it.

Even though I was told many times that my cancer was incurable I didn’t believe them. I felt good. I thought I beat the odds. I was going to be a bad ass Melissa Ethridge, guitar blazing, kicking its butt. Turns out not so much. So yes, I am still here trying to learn how to accept and live with the unacceptable.

However, I feel great today, the weather is perfect, and Tim is puttering around, fixing things, mumbling to himself, life is good. We are all blessed and the tender mercies are present and surround me everywhere.

Lastly, when Bridget first heard that cancer might be reappearing in our lives, her response: “Please, no more lasagna, mom, I can’t take it,” in reference to the universal food of love that so many kind and thoughtful people brought us the first time we went through this. This is what grounds me and keeps it real.

 

You can follow Barbara’s story at barbigwire.com.

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Sandra’s Story: Living With Metastatic Breast Cancer for 17 Years

June 11, 2015
Editor’s Note: Sandra’s remarkable story started two decades ago. She was 42 when diagnosed with Stage 2,  triple-negative breast cancer. Three years later, when the cancer appeared in her bones, it had changed to ER+, HER2-. Later when she had a new tumor in same breast it changed to ER+ and HER2+. Whew! Today, Sandra is 62 years old and  a tireless advocate for people living with MBC.  We love her story and we think you will, too!
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Sandra with a kitty from the animal shelter she volunteers at every week.

I’ve been living with Stage 4 breast cancer since 1998.  It took an agonizing three months to confirm the diagnosis with a biopsy and I got the news the day before I hosted Thanksgiving Dinner at my home for 18 family members.  That Thanksgiving was like a Three Stooges movie.  I told my mom about my diagnosis when we were alone, then my middle sister came in and wanted to know what was going on, followed by my eldest sister.  When we opened the door to come out, the entire family just froze.  My niece spilled red wine on my newly installed cream carpet and I totally forgot to make mashed potatoes.

I was 42 years old when I was first diagnosed with breast cancer.  With my original diagnosis of triple-negative breast cancer, the pathology of my tumor mirrored that of my mother’s who was diagnosed 18 years prior.  She had surgery and radiation.  I decided to go for chemotherapy as well, fully expecting to have the same results as my mother.

Unfortunately, three years later at the age of 45, my cancer metastasized.

My son was away at college and didn’t come to our Thanksgiving Dinner that year.  My mother and I drove 1,000 miles north to see him so we could drop off his car.  When I told him about my diagnosis, he was mortified.  I was ready for that.  I said “It’s your job to graduate and it’s my job to get better.”  He graduated and I am still alive, riding the mets roller coaster for nearly two decades.

I continued to work the first 10 years after Stage 4 diagnosis and got involved in my local Y-Me chapter along with the 3-Day Breast Cancer walk.  I believe the exercise from training for the 3-Day walk helped me stay strong for the therapies ahead of me and may have even extended my life, as did the support of my parents, my husband and my other family members.

My daughter turned 13 the day of my original surgery.  One night, as I was tucking her into bed, she said “Mom, I know you have breast cancer and so did Granny.  I know that I’ll get it too, and I want you to know that I’m OK with that.”  Although a sweet sentiment on the surface, this motivated me to want to do something to stop the disease so that her generation wouldn’t have to worry about ever dying from it.

My interest in the science of breast cancer and advocacy brought me to many National Breast Cancer Coalition conferences and Project LEAD.  I have participated in nearly two dozen breast cancer research review panels, sitting right next to researchers, statisticians, clinicians and epidemiologists, giving them the message that Stage 4 needs more attention and funding.

I’ve been involved with the Y-Me Helpline and then became a peer counselor for After Breast Cancer Diagnosis and Living Beyond Breast Cancer.  When others ask me what treatments I’ve been on, it’s hard to remember them all.  Some of them aren’t being used any more, like high dose chemotherapy followed by stem cell rescue.  Luckily I haven’t exhausted all of my treatment options and I continue to try to stay as healthy as I can so my body is able to withstand what treatments may come my way.

You can read more stories like Sandra’s here.

RIP Holley Kitchen, the MBC Mom Who Reached Millions

June 8, 2015

We were so very sorry to learn Holley died today, January 12, 2016.  She was 43 years old.

“Our hearts are broken as we share the news that Holley peacefully passed away early this morning,” writes Holley Facebook page friend and administrator. “She was surrounded by love, as she has been in every moment of her life. . .Details regarding Holley’s services will be forthcoming. Please respect the privacy of those closest to Holley as they grieve and make all the necessary arrangements. Thank you for your unending support and love.”  ‪#‎Lifer‬

Anyone who wishes to support the Kitchen family financially, can find the links here. Our hearts go out to Holley’s family and friends. She was a true gem.

“I didn’t know my risk for reoccurrence or what metastatic disease even meant,” she told PEOPLE magazine about the impetus for her famous video. “I didn’t want someone feeling like I did upon reoccurrence,” she said. “You get a cancer diagnosis and then you get a re-diagnosis and it’s a punch in the gut.”

Millions of people around the world learned what metastatic breast cancer is thanks to Holley’s decision to share her story.

Thank you, Holley. May God bless and keep your family.

 

Here’s our original post about Holley’s video:

Holley Kitchen’s viral video tells her metastatic breast cancer story…and is educating millions of people around the world about Stage IV breast cancer. Since being posted on June 5, the video has gotten more than 10 million views and 400,000 shares. You can watch it on YouTube here.

Holley's metastatic breast cancer video has been seen by millions.

Holley’s metastatic breast cancer video has been seen by millions.

Holley lives in Cedar Park, Texas. She told her story to KVUE’s Terri Gruca. “Holley was diagnosed with stage 3 breast cancer at age 39,” Gruca told viewers. “After a double mastectomy, chemo and radiation she thought she was cancer free. A year later she found out it had spread to her spine and bones.”

“I think it resonates with people because it’s honest,” Holley told the reporter. ” It’s what people don’t want to say and what people don’t want to hear,” she said.

We love Holley’s sense of humor and how she personalized her story. She’s also self-deprecating–she stresses that she’s not trying to make people feel bad–her mission is education. Like so many of us, Holley didn’t know what metastatic breast cancer was or how people got it until her own diagnosis.

Holley’s video shows what one person can do. Holley did a great job of educating herself about metastatic breast cancer. She is obviously very familiar with “The 13 Facts Everyone Should Know About Metastatic Breast Cancer.” Thank you,  Holley,  for the shout out to MBCN.org at the very end of the video!

We also love Holley’s term for someone living with metastatic breast cancer: #lifer. You can find Holley’s group” Facebook page here.

 

….and now BuzzFeed has picked up Holley’s story: http://www.buzzfeed.com/juliegerstein/this-womans-breast-cancer-journey-will-leave-you-speechless