Barbara: Learning How to Accept and Live with the Unacceptable

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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5 Responses to Barbara: Learning How to Accept and Live with the Unacceptable

  1. Cathy Capogna says:

    See, you are a fighter. I knew it. Time to switch from lasagna to tuna casserole??

  2. Lisa mckenna says:

    I am angry, sad, frustrated, and most of all confident that you will have a long long time to keep this in its place. Damn cancer! I always enjoy working out with you. Your humor and strong spirit makes the gym enjoyable. When I lost both my parents you told me a bit of your story and I knew you understood. Fight hard, fight long, find something to be grateful for at the end of each day, enjoy family, friends and life. This too shall make you stronger!

  3. Sounds to me like you certainly are a bad-ass, guitar blazing, butt-kicker. I imagine you digging deep and fighting hard. I’ll be following your story and cheering you on.

  4. Beth says:

    Thank you for your blog. I need to hear your words.

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