Wrinkles, Breast Cancer, 1

Wrinkles

Breast Cancer, 1

What can I do that matters? Where is the ideal space for me to be to create the largest positive impact on the world and the people about me? How can I best serve society? Which part of my lived experience will empower others to the extent that they will realize the power of their own agency and autonomy? In what way can I be useful?

My books, Child, Woman-Child, Woman; Spiritual Grace; and One Mom’s Mayhem, all have a central theme of embracing my autonomy and agency in each situation that arises throughout my life. They attempt to show how to walk through life experiences with some level of dignity and grace. They attempt to shine a light onto injustices in our world as experienced by an ordinary person. All of my books are in various states of near readiness for publication . . .

This particular piece of writing is primarily concerning the state of women’s health care as I am currently experiencing it.

At the beginning of December I had a premonition come over me that felt like something was terribly wrong. I wasn’t sure what, but I knew that something was coming. A week later my sister was diagnosed with breast cancer. About a week after that my niece’s daughter experienced significant trauma. My thought at that point was, “things come in threes, who is next?”. My family circle is small. I thought, could it be my cousin? Or, me? And at that moment I felt a heavy weight fill my soul, as if a heavy bag of sand had been placed on my heart. It’s me. And I knew it would be.

I had a mammogram. I used to get them every year, or at least every two years. COVID seems to have thrown off my schedule. That, and moving from California to Washington. I just hadn’t gotten in the groove of showing up for these over the last few years. I went to Kaiser in Seattle for this. Their campus is fairly large, but I managed to find the right floor of the right building and the waiting room fairly easily. They were unable to see my past mammograms from Kaiser California. I filled out a request form for them to be sent over. The usual pushing, pulling, squishing was experienced.

Waiting for the results seemed to take months, but it was only about a week before I saw them on MyChart. Hmm. Both breasts showed masses. I went ahead and searched online for the details on what type of masses they were. On the left were calcifications. I read that these may or may not be of concern, depending. On the right it was a spiculated mass. These, I read, were 90%-96% always malignant. It took me about five minutes to find this information. Then, my phone rang. It was a nurse from Kaiser calling to tell me about these results and to schedule further imaging. That was quick! I did not feel a sense of surprise, nor a sense of dread. It was more like I went through this process of thinking, ok, let’s figure this out. Let’s do it. Bring it on.

I flew down to California the first week of January to give support to my sister. Mary was extremely emotional about her diagnosis. She described it as, “being full, all the way full, I can’t take anything more than this. I feel dizzy. I can’t think properly”. She decided not to work until she was done with the whole process. She had the biopsy prior to this and it was malignant, but very small. The plan for her was to have a lumpectomy followed most likely by radiation and possibly chemo. She and her husband had recently bought a house. I had seen it last summer, but it was good to see it more fully furnished and decorated. She set up a guest bedroom for me! Well, for all out of town visitors, but for this moment it was for me. It was lovely. We mostly hung out, ran errands, watched TV, talked, and had friends over. Jess, my childhood friend, met up with us at Mary’s house and on another day she came to the coast with us. It always feels so good to be in a place where I know every street, every building, every open space area. To never feel lost in relation to my surroundings. Home. My home county.

A few days after returning home I found myself at Kaiser imaging. The mammogram nurse was great, working with me as best as she could to get my big. floppy, double Ds into the squeezy machine in every possible position. I was asked to sit and wait while those were reviewed. Then, I was moved to a different room for a sonogram of the right breast and underarm. There was a different technician for this procedure. The room was darkened. I was laid down on my back. I was again asked to wait while these images were reviewed. Then the doctor, an oncologist, met with me and said that I would need to have a biopsy for this mass. She said that the calcifications on the left were safe, that they had been stable for at least ten years. I was aware upon leaving that I was not experiencing any sense of violation or having been overly investigated. This team, the imaging team, were good at what they did.

The biopsy for the right was scheduled for the following week. Another darkened room, this time laying on my left side. The nurse was excellent, talking through each small task she was doing and why, calm, reassuring. She demonstrated how the tool to take the biopsy would sound, a loud, clicking sound. They brought me a warmed blanket and a specialized pillow to keep me in place. I was to have my right arm over my head for the procedure. For some unexplainable reason this felt uncomfortable. But, I managed to be a good patient, to be still, to follow directions.

During this time I found that I had become very distracted. It was a different type of stress than Mary was feeling. I wasn’t feeling strong emotions. I had a hard time concentrating at work and, well, everywhere. I felt exhausted all the time. It was super busy at work. I was the Director of Finance and Operations at an independent school, on the Leadership Team. We were in the middle of an audit. There was lots of work to do in lots of areas of what I did there. In the midst of that, I chose to put my health and my ability to be supportive to my family as the higher priorities. One morning I talked with Mary for half an hour in my car outside of work. Similarly, I took a call from Layla during business hours. And, I left a meeting to take a call from a doctor. Something had shifted in me. My spirit had turned to priorities of healing myself and my family.

The biopsy results revealed that the mass was malignant. I was not surprised by this. Appointments were scheduled all in one day, the following Thursday, with the surgeon, the oncologist, and the radiologist. The next Monday morning I received an onslaught of information in MyChart and in my email that I found caused even more exhaustion

I flew to Malibu to give support to Layla. Malibu is lovely. The color of the sea really is a spectacular shade of blue. It’s different from Northern California. There is a row of super cool beach houses, right on the beach, on the road when driving north to Malibu proper. Layla is a superhero, bad ass, single mom. She came from nothing, was handed nothing, yet she had found her way into a well-paying career that allowed her to buy a house and raise her three children. I knew that she was on the other side of the political spectrum than me, but we always managed to not let that get in the way of our relationship. She did mention that she felt that what had happened to her daughter might be a result of not having a male figure in the house. In my opinion, this is total bs, but I managed to refrain from getting all fired up about this belief. I was able to keep myself still. It is perplexing to me that someone can have evidence of a successful life, yet still believe others when they are told something like, “you need a man” in order to have a “real family”.

I told Layla about my diagnosis, but I hadn’t told Mary yet. She was too overwhelmed with her own process. I would tell her, but I would wait a few more weeks. Once I knew more, and she was further along in her process. It was good to see Layla and her two sons. We just hung out, went to restaurants, and talked. Her daughter was staying with her grandparents for a month to help with her recovery. I was disappointed that I wasn’t able to see her, but this allowed for Layla and I to connect more freely.

I knew what I wanted. I knew as soon as I learned that I had masses. I had known for years what my choice would be should this situation ever occur. I had lived and worked in Southern Marin for many years. This is, or was, THE hot spot for breast cancer. It had the highest rates in the country, if not the world. I had always assumed that it was a matter of when, not if, for me to have breast cancer. I was sure that I wanted a bilateral mastectomy with reconstruction.

My reasoning for this choice was multifold. First, I was concerned about the quality of women’s health care. While it’s convenient and less time consuming for women to buy various remedies over the counter, rather than see a doctor, I am beginning to see this as becoming a loss of oversight and a depletion proper medical care.We were all pleased when we became able to walk in and by medication to treat a yeast infection. And, the majority of the time, this works out fine. Yet, how often does it occur that a woman has misdiagnosed herself? Do we even know what the data is for this? Or, what the consequences are? I’m seeing that contraception is now being sold over the counter. I’m not sure how I feel about this. On the one hand, I like that it is more accessible. On the other hand, shouldn’t you be under a doctor’s care? What are the long term effects of this? How much information is a person missing if they do this without speaking to a doctor? I started thinking about this more when I received a kit in the mail to do my own cervical cancer screening at home. This is no joke. It came in a box with a long Qtip thing, a plastic vial to put it in, a return box with an address label, and instructions with pictures. I was stunned. Is this what women’s health is coming to? Can we really be empowered and entrusted to test, diagnose, and treat ourselves? I called Kaiser to make an OB/GYN appointment. They no longer refer to the department at OB/GYN. It is now the Midwifery Department. Is this better for us? Or, is it a downgrade? I can’t decide. I’m not clear as to what the overall impact is on women’s health care. All I know is that you can no longer find OB/GYN on their website.

The second reason for wanting the double mastectomy with reconstruction was because I was 63 years old. My body was still at an age to be able to heal well. My skin could still hold stitches, my muscles would respond and heal well. What if I need more breast cancer surgery in 10 or 20 years? Think how much harder that would be for my body to recover from.

The third reason was that at the time I had a job with good health insurance and good pay. I didn’t need to worry about the cost. But, in 10 or 20 years I wouldn’t have these anymore. Who knows what would be available to me in the future? (I didn’t say this to the doctor, but I’ve seen older ladies in the hospital. I have seen them being treated with malicious disrespect. People I have known who have made extensive contributions to society and their community being treated like crap; just another gray head. This I know from direct experience). I also had a great support system . And, mostly, I had all of that exposure from living and working in Marin County. Southern Marin County. This decision was a well-made plan for myself. It had not been made on a whim. I was not on the lookout for a free boob job.

Don’t even get me started on the current Republican agenda. My goal is not to swirl down into political debate. My intention is to focus on human rights, not simply women’s rights, for I know that many people who are not women find the need to fight for their rights in a variety of scenarios. This particular piece is focused on female health because this is what I’m currently going through. From what I can discern Republicans do not see women as equal to men in any capacity. Especially older, post-menopausal women. I’ll just leave that there.

I arrived for my day of appointments on time and well-prepared with questions that I had accumulated from friends and from my own online research. I do not recommend online research when going through this. It can be incredibly traumatizing. The surgeon was a woman. She went through her whole list of items, telling me what my treatment would be and how it would be done. Not once did she stop to ask what I wanted. For her part, she was doing exactly what she has been trained to do (bless her heart). We patients are more or less put on a factory line for processing. She wants me to have a lumpectomy followed by many weeks of daily radiation treatments. I want a bilateral mastectomy. I let her get to the end of her dialogue and then told her what I want my treatment to be. I am aware that I have the legal right to ask for this and that they are bound by law to abide by my wishes for the bilateral mastectomy and the reconstruction.

The surgeon was clearly angry with me for requesting this. She said I was not a good candidate for this because of my weight, that they wouldn’t remove the fat under my arms, that plastics wouldn’t even consider reconstruction because of my weight. She finally slapped her folder on the table and said that we may as well cancel all of my remaining appointments for the day if I was sure that this was what I wanted. There was never a spirit of attempt at collaboration nor a building of camaraderie from her side. There was nothing I could connect to. I said I’d think about it and went on to the next appointment.

My experience with the oncologist was completely different. I told her all of my reasons for wanting the bilateral mastectomy. She assured me that my request was not unrealistic or unreasonable and that I had every right to request it. She said that she had done some of her training in San Francisco and that she knew about the cancer rates in Marin. She put in requests for a brain MRI and a PET scan of my abdomen due to some health complaints that I have had recently. I left her office feeling good about my decision and the process. My visit with the radiologist made me feel clear that I did not want that. The oncologist said that I most likely will not need radiation or chemo after surgery if I have the bilateral mastectomy.

Oh, really, do not search up your results from an MRI of your brain. I am not convinced that my weight and my diabetes are a result of my partially empty sella causing my pituitary gland to no longer function. And, I must have Multiple Sclerosis because I have T2 flares. I know, I know, the doctors are saying that everything is mild and within normal range for my age. But . . . do they really know?

I had one more phone call with the surgeon when she called to schedule the surgery. She was bitter and unkind, referring to my weight often and implying that there was no way that she would be able to make it look nice, or flat. I asked her if they can please do the reconstruction during the same surgery. She flustered and eventually said yes, they do it all the time. Which I already knew. I wrote a note to my breast cancer coordinator person, she was lovely, letting her know that I need a different surgeon and outlined how I have been treated by this one.

I had advice from several people within the Kaiser system that it would be a good idea to move to a different center for my treatment. In particular, it would be really good if I could get into Fred Hutch. I called them. They said they had a two month wait for the intake appointment. We talked a little more and she realized that I lived north of Seattle. Hutch has a center to the north. They called me and were able to get me an appointment within a matter of weeks. I feel so much better about everything now that I am moving to Hutch. I feel safe. I feel like I will truly be cared for.

My sister and I are very close. We are talking about our various experiences almost every day. I am in better touch with various friends now that I am going through this. It is one of the gems of having to go through this. To be reminded that I still have all of these connections. I get going with my day, my week, my month, my year. All of a sudden all of this time has gone by and I haven’t been in contact with my people.

Sometimes it takes an event such as this to remember what is important. I have been more attentive to my prayer and meditation routines. I am continuing to keep to a healthy diet. I have returned to the gym after about a six month hiatus. I am giving myself a break in other areas, such as housework. My house is messier than I would like, but that’s how it has to be for now.

Which brings me to the beginning of this piece. What would goodness look like if I were to contribute to my family, my community, the world? What can I do that is meaningful? Things are not great at my job. There’s a new boss that I have a hard time working for. Do I want to keep working a stressful job? Isn’t there more to life than that? At one time, the job was so important and I was so satisfied with it. I was ambitious. I didn’t just reach my goal, I overshot it. But, now? My body, mind, and soul could surely do without the stress of it. And, isn’t there something more meaningful that I can do? If we influence each other positively by chance without even knowing that we are doing so, imagine if we attempt to do good things for each other on purpose? What more can I do? What small habits can I build into my ordinary life that will have a positive impact on others? This writing is a part of it for me. To write. To find a way to share my experiences in such a way that society is positively impacted by it. I will give it my best effort.