Chapter 7 – The Fear – I Don’t Recommend It

In the days after I finished radiation therapy in 2002, I often found myself crying for no apparent reason. Or for little, meaningless reasons. Really, I think I was crying for a lot of deeper reasons: frustration with the pain, anger that I had to go through treatment at all, relief that treatment was over, and fear that the treatment had not worked. I remember going to my sister’s home for the holidays that year, and being very emotional the whole time we were there.  This emotional volatility would come and go for a while.

Fortunately, the blisters from radiation eventually crusted over, became less painful, and started to heal.  I also became less raw emotionally, although I continued to struggle with fear of recurrence.  The radiation burn on my breast eventually faded, but I continued to have pain in my breast at the tumor site. Pain that my radiation oncologist simply said that I shouldn’t be having. When sufficient time had passed, my breast surgeon prescribed my first post-treatment mammogram. 

This mammogram did two things: it confirmed the cancer was gone, and it showed that one of my lymph nodes near the tumor site was swollen. There was a small chance that it could be cancer cells, but it could also be an infection. My breast surgeon did an in-office needle aspiration – drawing the fluid out – of that lymph node to test it for infection, and in the meantime put me on a general antibiotic.  By the time the test results on that lymph node were back, and confirmed it was an infection in the tumor site, the antibiotic was already working and the pain I had been feeling for months was finally gone. However, in the days between the aspiration and getting the results, I struggled with the fear that the cancer was still there.

That experience, even though everything turned out fine, was just the first of many false alarms that MG and I went through after my first diagnosis.  That is the life of someone who has been treated for breast cancer, or any cancer.  Anything that looks remotely related to your cancer, even if it was early-stage and successfully treated, means extra tests and holding your breath until you get the “all clear” yet again. Many survivors experience a similarly stressful reaction to regular follow-up exams, like annual mammograms. And no matter how many times the doctors tell you that you are fine, you may still react with some degree of fear. I think this is normal for anyone who has been through cancer or any potentially terminal illness that can come back after treatment.

I want to make a distinction here between that kind of fear, the fear that arises in response to having some kind of medical test done, or some kind of temporary health concern, and the kind of fear that I often struggled with during the five years following my first breast cancer.  And I want to make this distinction because I feel like I often lived my life in a state of fear: unnecessary, time-wasting, life-draining fear.  I call it unnecessary fear, because if you remember my initial diagnosis, it was Stage Zero, non-invasive, ductal carcinoma in situ.  Which is a particular cancer that can’t come back (or recur) because it had never escaped its original location in the duct. So, the chance of getting anything other than more DCIS elsewhere in my breasts was pretty small.  Now, at several points along the way in this diagnosis journey, MG and I were told that the odds were in my favor, that the chance of a negative outcome for a particular test were very low; and every time, we got the result that the odds said we would not get.  So, even though the chance of my DCIS coming back was low, I just couldn’t shake the belief that it would somehow come back.

It would not be an exaggeration to say that I lived a lot of the five years following my DCIS treatment in a state of fear about something that would probably not happen. And I regret that choice. Because I do believe it was a choice, a choice that I made on a regular basis. I listened to my fear and I let it control my life. I think I believed that if I was vigilant about the return of the cancer (if I let the fear run my life), then it wouldn’t surprise me when it came back. Somehow I would be ready, or something.

I hope that as you read that last paragraph it seemed irrational to you; because it was irrational. There is no way to prepare yourself for the return of your cancer.  Just as there is no way for your doctors to predict if your specific cancer will return, or when it will return, or in what part of your body.  Therefore, living five years of my life in a state of anticipatory fear of my cancer coming back was a waste of time and emotional energy, and I’m pretty sure that this daily choice may have had the cumulative effect of keeping my body in a state of constant stress, therefore leaving me more vulnerable to developing a new cancer.

It is precisely because I spent so much of those five years choosing to live in fear, that when I ended up being diagnosed with a new breast cancer at the end of those five years, I immediately felt responsible for bringing that new cancer on myself.  Now, do I believe that if I had not lived in fear I would never have developed the new cancer? No, I don’t believe that. I believe that my breasts grew cancerous tissue, which was fueled by estrogen, and that I would eventually have gotten cancer again.  Would I have gotten it so soon? I don’t know. But I do know that I would have had a richer, more enjoyable life during those five years if I had not chosen to live in fear.

The reason I write about this fear is that I am hoping to help you avoid making the same mistake.  There is no logic or sense to living life being afraid of illness or death.  It’s not that I don’t still have my moments, days, or even weeks where I struggle with my fear of recurrence and death; of course I am sometimes afraid.  But between those brief periods of being afraid, I choose to not be afraid.  And I am not just choosing to not be afraid of the cancer, which gives me more freedom to feel joyful and happy and at peace; I have chosen to let other fears go as well, fears that always held me back from doing things I wanted to do. 

For instance, I chose to give up my fear of riding in boats. This fear used to mean we couldn’t go on adventures like whale watches or ferry rides, which MG really enjoyed, as she loves boats and the water. Since treatment for my second breast cancer, I have been on whale watches off of the coast of Maine and Cape Cod, in the Bay of Fundy in Nova Scotia, and I have taken lake cruises and ferry rides, including an overnight cruise from Portland, Maine to Yarmouth, Nova Scotia. I no longer suffer from seasickness on boats. I also gave up my fear of heights, which allows me to be more adventurous.  MG has often said she misses my fear of heights, particularly when I am standing on the edge of a canyon or a cliff, which I would have been too afraid to approach in the past. Don’t misunderstand me; I have not become reckless. I don’t go skydiving or enjoy crazy carnival rides, although I do enjoy a good Ferris wheel ride. I am no longer afraid of walking across the Brooklyn Bridge, or of hiking up a mountainside in the Adirondacks. I also decided that I was tired of being afraid to ride horses, something I had always wanted to do, but which always made me fearful.  So I spent a couple of years taking riding lessens, and went horseback riding in Ireland, in Hawaii, and in the Adirondack Mountains. 

Do I wish that I could have lived those five years between cancers differently? That would be a waste of time, and I am done wasting my time. In AA, we talk about not regretting the past nor wishing to shut the door on it, and seeing how our experience can benefit others. I hope that reading about the lessons I have learned about my fears will help you spend less of your time living in your own fears.

Chapter 3 – Coming Out to My Breast Surgeon

When I was diagnosed in 2002, it was not uncommon to hear about lesbians experiencing hostility in healthcare settings because of their sexual orientation, or for partners to be left out of each other’s healthcare altogether. And it wasn’t very common to hear about lesbians who were open with their healthcare providers about their sexual orientation or same-sex relationships. This is the context in which I was facing breast cancer.  

Even though my gynecologist knew I was connected to MG and her family, we had yet to tell her that we were a couple. From our perspective it seemed implicit, but we weren’t comfortable yet making it explicit, and it hadn’t seemed important enough in that setting to take the risk. I was so used to just answering no to birth control questions, and having that be the end of that particular line of questioning. I had never had a gynecologist pursue the topic any further or ask for clarification about my sexual orientation, and there were never any questions about sexual orientation or non-heterosexual sexual activity. 

But now we were facing the possibility of breast cancer, and I needed MG by my side and visible to the doctors, so MG went with me to my first appointment with the breast surgeon.  We were both nervous.  While we were waiting for my appointment, we saw two other women in the waiting room, who looked to me like a lesbian couple.  I thought, hmmm, maybe this doctor is going to be okay.  I mean, if she’s a breast surgeon, most of her patients are women, so she has to have her fair share of lesbians among those women, right? So, when we met her that day, I introduced MG as my partner.  I wanted to make sure that she was aware of our relationship right out of the gate, rather than waiting until the “right moment” or an “appropriate time” and finding myself paralyzed by fear in situations when I need MG the most.  She didn’t even blink, which I loved about her.  She included MG in the conversation that day (and every appointment after that) asking her if she had questions, making sure that she and I both understand what she was telling us. 

This is the kind of reaction you want from your potential surgeon, or from any healthcare provider. And if you are lucky, it’s the kind of reaction you get.  Now, if she had been freaked out about my partner being a woman (something I have not encountered even once on this journey, thankfully), I would have had to either talk to her about her reaction and see if she could find a way to be more accepting, or I would have had to reconsider my choice of surgeon.  Since we really felt comfortable with her all around, I’m very glad that we didn’t have to worry about her acceptance of our relationship.

In addition to her acceptance of our relationship, the surgeon became an important source of information for me when I was facing new cancer care providers and medical settings. Based on her reactions, I was more confident about being open with new providers about our relationship. My ability to approach new providers with that confidence, as well as the changing attitudes towards the LGBTQ community in this area and in our community, may be why I have always had positive experiences with cancer care providers, as well as any other healthcare providers. In addition to her influence on my confidence levels with other providers, if I ever had any doubt about the kind of reactions I might get, I could ask her if she felt that provider or facility is safe.  She was very familiar with the local health care system and, as a heterosexual provider, had a great “insider” perspective on other providers’ attitudes about LGBT patients. She always understood why I might be concerned, and she never steered me wrong about the kind of reaction I could expect in any setting. 

Because of our confidence in my breast surgeon, we came out to everyone else involved with my cancer care. With the oncologists, radiation oncologist, with nurses, office staff, with everyone. And this also extended to being more open with my other healthcare providers as well – primary care, gynecology, allergist, just about everyone. Not that many of them needed to be told; I think it was obvious to most of our routine providers already, they just never brought it up on their own. Their intake forms never asked, their routine medical records update forms didn’t ask. MG was always my emergency contact, but I was never sure what I should list in the “relationship” box next to her name. Even after our wedding in 2005, it wasn’t until 2010 when our state passed legislation for insurance providers to recognize same-sex marriage performed in other localities where it was legal, that I felt comfortable listing MG as my spouse, rather than my “significant other” or “partner.” When the US finally recognized same-sex marriage as legal in 2013, we could feel comfortable choosing “married” as our relationship status or listing each other as “spouse.” 

I remember being particularly concerned in January 2008, when I was preparing for my mastectomy and reconstruction, which would involve a few days in the ICU before being moved to the regular post-surgery unit. I was very worried that MG would be denied the right to stay with me in the hospital. Especially the first night. This was pre-COVID, when you could have people stay with you overnight in your room or, in the case of ICU stays, in the family waiting room but with access to you throughout the night. But I had heard stories about same-sex partners being denied that right, and I had one family member who suggested that she should be the one to stay with me that night instead of my wife, as she was my “real family.” If my own family member could be so wrong about how important MG was to me, I worried that nurses or staff physicians might also be that wrong.  I took that concern to my breast surgeon, and she assured me that she had other lesbian patients have the same procedure in the same hospital, who stayed in the same ICU, and none of them had ever reported facing homophobia there. She also offered to mention how important MG was to me, and to assure that she would have full access to me in the hospital. Because she was so understanding about my concerns, I had full faith we would be treated just like any other patient and their partner. And we were.

 

Chapter 1: Mom

**Copyright 2022 Maria Teresa Brown - All Rights Reserved**

Part 1: The First Go-Round (or Ductal Carcinoma In Situ)

Chapter 1: Mom

I will start my story by telling you that I am not the only woman in my family who has had breast cancer.  While neither of my grandmothers had it, as far as I know, or any of my aunts, my mother did. It was found during a routine mammogram, and she had a complete mastectomy on that side, but no other treatment. After the mastectomy, she wore a prosthetic or not, depending on her preference on any given day. Her cancer was found when she was 63, and she remained cancer-free until her death at 81. 

At the time of her diagnosis and mastectomy, I was in my late 20s.  I had been sober for a few years, but was still a heavy smoker. Around that time, I knew of a women in my local community who had breast cancer and was a heavy smoker – she had a mastectomy, kept smoking, got metastatic[1] breast cancer, kept smoking, and then she died. All within a few years.  It seemed really fast and frightening to me. All I could think about when I heard my Mom’s diagnosis was that now that breast cancer was officially “in my family” I didn’t want to be dealing with having breast cancer and trying to quit smoking or being unable to quit smoking and dying from cancer because of it. That was the year that I began making my first serious attempts at quitting smoking.  It took several years and multiple failed attempts, but I did finally quit smoking for good the year that I turned 32. 

Now, I don’t know for sure if cigarette smoking has ever been proven to cause breast cancer, but if your mother, a heavy smoker, had any kind of cancer, you would probably find yourself wondering if her smoking had anything to do with it. In my mother’s case, she did not quit smoking. Ultimately, she developed COPD, and her official cause of death was “complications of COPD.” Mom’s smoking was not something I could change. But I could change my own habits, and so I focused on that. And one of the first things I thought the first time I was diagnosed with breast cancer was “thank God I quit smoking when I did!” 

Since my first diagnosis, alcohol abuse has also been linked with breast cancer.  As I mentioned before, I was already sober a few years when Mom had her mastectomy, and I was sober 12 years when I had my first breast cancer. My doctors have always been confident that my history of alcoholic drinking was distant enough not to be linked to my breast cancer. I am not as confident, but I am certainly grateful that I was not still drinking when I was diagnosed. Because the only thing that was harder than quitting smoking for me was quitting drinking. And I would definitely have been told to do both once I had breast cancer. Whether I would have been able to, though, is highly unlikely. 

This chapter is about Mom, not just because of her history as a smoker and a breast cancer survivor, but because of my role as her caregiver throughout the years that I was dealing with facing and surviving breast cancer.

I was diagnosed with my first breast cancer in August of 2002. I had already spent pretty much every day of that summer at the hospital, trying to figure out what was happening to my mother.  That spring, she had been moved out of the apartment she shared with Dad into a homeless shelter for mentally ill women, and eventually into her own apartment in an enriched housing program.  Her enriched housing program was essentially independent living for older or disabled adults who qualifid for Social Security Disability, Medicaid, and public housing. It was not a good transition. She was very unhappy, and her health was bad. While she had lived with bipolar disorder all of her life, she was additionally depressed about being separated from Dad, but he just didn’t want to, or couldn’t, take care of her anymore.  She also started getting really forgetful.  More than I even realized at the time.  Nobody was aware of it, but she was experiencing a medical condition – hyperparathyroidism – that was causing all the calcium in her bones to leak out into her blood. This caused hypercalcemia, which caused the memory loss and started making her fall. The worst fall broke 2 vertebrae in her back and split her head open, landing her in the ER. They discharged her back to her apartment that day, which felt unsafe to me, but I didn’t know what else to do. A week later, she was completely incapacitated and had lost most of her ability to speak. She was back to the ER, and this time admitted into the hospital. Within a week, and before they could figure out what was going wrong, she ended up spending 20 hours in a coma. She survived the coma but was what they called “severely demented” for weeks afterwards. When she was well enough, they discharged her to a nursing home. And she lived in nursing homes for the rest of her life. Her dementia became less severe after that initial hospital stay, but she never recovered her short-term memory or her capacity to take care of herself well enough to live outside of a nursing home.

In the middle of Mom going through all of that, I went to the gynecologist for an annual exam.  I had been living in Syracuse with my partner for a year and a half and had not been to the gynecologist since before I moved. Which meant I was overdue for an annual exam. I hated going to the gynecologist, mostly because it is an unpleasant experience for any of us, but also because of repeated questions about birth control (no matter how many times I told them I didn’t have sex with men, they just kept asking those questions!) and my history as a sexual abuse survivor.  So I had been putting off my first visit to MG’s gynecologist.  Eventually, her mother told her to just make the appointment for me if I wouldn’t do it myself.  The best advice ever, it turns out.  MG made me the appointment for that July, and so like a good girlfriend, I went.  The gynecologist’s office was in the same building as an imaging office, so she sent me right over for my baseline mammogram.

I was only 36, and since Mom’s breast cancer a few years earlier, the former gynecologist had told me I didn’t need a mammogram until I turned 40, because Mom’s cancer was post-menopausal. But MG’s Mom, and their gynecologist, believed in early baseline mammograms, so that you have images to compare to when you start your regular mammograms at age 40. This is why I was sent over to imaging for a mammogram.  The physical examination of my breasts was totally normal.

The events of that afternoon are not entirely clear anymore, it was so long ago.  I know they wanted a magnification of my left breast, because the radiologist wanted to take a closer look at it. Which means that I had to have extra mammograms done on that side. And I know that the area they were concerned about was very close to my armpit, so they really had to pinch my breast in the machine, which hurt. After the second image, the technician sent me back to my gynecologist, who told me that there was a suspicious area in my left breast and they needed to refer me to a breast surgeon.  Before I left their office, I had an appointment with Dr. G, who ended up being my breast surgeon for both breast cancers. 

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[1] Metastatic breast cancer is when the cancer has spread to other parts of your body (like your liver, brain, or bones) or comes back (recurs) after you have complete treatment for the initial cancer. Some people might call it systemic cancer, or stage four cancer, or end stage cancer. At this point, the cancer is not curable, although depending on the particular details of an individual case, it may be manageable with the appropriate treatments, and some women have been known to live for many years with metastatic breast cancer.

My Breast Cancer, My Mother, My Wife, and Me: One Lesbian’s Breast Cancer Journey

I've decided to use this blog to share my breast cancer memoir, which I hope to self-publish. The title of this post is one of the titles I'm considering. Please tell me what you think of it in the comments.

Lesbians, and other members of the LGBTQIA+ community, are essentially invisible in mainstream breast cancer literature.  Mainstream books written to guide breast cancer survivors through recovery from treatment are written with an unacknowledged assumption that all survivors are cisgender heterosexual women, and the authors of commonly available cancer memoirs are cisgender heterosexual women. While lesbians may still find useful information in literature written from and for the heterosexual survivor’s perspective, their invisibility in these written accounts of cancer and recovery experiences effectively communicates that their cancer experiences are unimportant. Many lesbians may see these heterosexist assumptions as barriers to seeking the help and support they need during one of the most difficult times of their life. Because lesbians with cancer may not have a community of other lesbians with cancer around them, and cannot find themselves in the cancer literature, cancer can be a very isolating experience. They may hunger for information from other lesbians who are going through the same experience.

I was diagnosed with my first breast cancer less than ten years after my mother survived her own breast cancer. As a survivor of two breast cancers (DCIS in 2002 and Stage I in 2007), I have been through multiple lumpectomies, radiation therapy, a bilateral mastectomy with reconstruction, chemotherapy, and a hysterectomy. In addition to being relatively young for each of these cancers, 36 and 42 respectively, I am also a lesbian.  I was fortunate in that, at the time of my first diagnosis, I personally knew two other lesbians who had also been through breast cancer. I quickly realized, however, that all of the support resources offered by local and national breast cancer organizations assumed that all patients are heterosexual, and that at fundraising events in my area, it was assumed that we were all heterosexual. If I wanted a community of lesbian cancer survivors, I would have to create that community. In 2008, I created a Facebook group for lesbians with cancer and their partners. Our membership currently numbers 321 lesbian, bisexual, and gender non-binary patients, survivors, and partners or caregivers from around the United States and the world. Publishing this cancer memoir is another step in providing lesbian cancer patients and survivors some sense of community with other lesbian cancer survivors.

I tell my cancer story using a combination of narrative text, email messages, private journal entries, blog entries, and messages from family members and friends.  Throughout my cancer experience, I have made sure my sexual orientation and my relationship with my wife were visible to healthcare providers, and my wife has been an active partner in all of my treatment decisions and in my relationships with my healthcare providers. While I have always had to be intentional about that visibility, and sometimes had to risk that visibility in uncertain environments, I have been very lucky in terms of providers being respectful of me and of us. This is an important point for those lesbians who may be putting off preventive screenings for fear of discrimination and homophobia in healthcare settings.  While these negative experiences do sometimes happen, they are not inevitable. Depending on where you go for treatment, you may find providers who are more accepting than you expect. In this context, my memoir also communicates the importance of being proactive in terms of regular healthcare and cancer screenings, and provides a list of available resources for lesbians and their partners facing cancer.

Jane Devin and Elephant Girl

I love this book. Jane Devins's (janedevin.com) memoir is gritty and raw and painful to read. Her life-long struggle to escape poverty, a poverty she would not experience had she not been so badly abused by the adults around her during her childhood, is difficult to witness, even if only in writing.

For most of my life, people who have heard my story have told me I should write a book about it. Maybe some day I will, but I will never be a Jane Devin. As much pain and struggle as I can point to in my own childhood or young adulthood, I could not help but feel grateful that my childhood was not as challenging as Jane's. and I am filled with admiration for her strength and her ability to survive and thrive and pursue her dreams.

And I doubt I will ever have the courage to change my life the way she has changed hers. I have friends who have done it, stripped their life of materialism and walked away from the constraints and comforts of the stereotypic American work life. I think that takes a lot of courage and imagination.

The world may be full of Jane Devins that we never hear from... How I wish they could all find their voice and we could learn to listen for them.