2023 Cancer Journals

As 2023 comes to an end, I’m finding it difficult to put together a coherent thought about what has been one of the most painful years of my life. Instead, I’m sharing some of my journals from this year.

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10/23

I’m on the plane to Boston. I had to look out the window to admire the sunrise. Something about the sunrise over the Atlantic that warms my soul and refreshes my spirit. I’ve been feeling very emotional—sad, overwhelmed—for myself and for Palestinian people. I watched a heart wrenching video of toddler who had been rescued from the rubble. His legs were severed, and his torso wrapped up to control the bleeding. The men who saved him were washing blood off his face while he cried out in agony.

It’s breast cancer awareness month. Pink ribbons are everywhere. I don’t feel empowered when I see them. I feel sad. I feel pity for myself. I imagine pity from other people staring at my bald head. The pink ribbon is a reminder that my body is trying to kill me.

Every time I think of that little boy, no older than three, or look down at the drink napkin with the pretty pink ribbon, I sob. Looking out the window at the sunrise over the Atlantic lets me hide my tears.

11/17

Sometimes I’m afraid to journal when I’m in the depths of my pain. I’m afraid to confront the truth of my feelings. The truth is my healing has not been linear. I don’t feel strong most days. I weep nearly every day. Sometimes out of nowhere. Every now and then I still wonder why me? Why now? Some nights I can’t sleep wondering how much time I have with my husband and my children.

11/28

Tomorrow is surgery day. I’m scared. Scared that I’ll never be the same again. I’m losing a part of me that has been so central to my life. I nurtured my babies with my breasts. They gave them sustenance. They gave me pleasure. And in an instant, they’ll be gone. I’m sad. But a deep sadness. The kind that feels never-ending. The kind where joy can peek through but only moments at a time. Only until I remember all that I’ve lost. I’m grieving. I have so many things to grieve. My body, my plans, my curls, the certainty that I’ll grow old.

I realized this year while reading The Wild Edge of Sorrow by Francis Weller that I don’t have a grief practice. I was never taught how to grieve. At most, I try to be present with my feelings—a vast improvement from just intellectualizing them. But no grief rituals to reflect on loss.

How do we honor the lives, plans, idea(l)s, futures that we’ve lost?

A lot of us try to get to the happy ending because pain is so uncomfortable. We don’t know what to do with it. How to respond to it. On more than one occasion, I’ve been congratulated for “being in remission” when my treatment hasn’t even finished. I still have radiation and several more surgeries. But people want to get to the good part. The happy part. Sometimes I even find myself comforting other people about my cancer.

“I’m in pain but…I’m getting better!”  

Managing other people’s emotions is exhausting. Especially as I get more comfortable with my own. But I get it. I, too, used to feel the urge to rush people past their pain. To try to find the proverbial light at the end of the tunnel or the moment of inspiration. To offer solutions instead of companionship.

12/4

I showed my children my scars today.
I never want them to think of me as more than human.
I want them to see all of me.
Even the parts I’m not comfortable with.
I want them to know that it’s okay to be imperfect.
To feel pain.
To have scars.
To show ourselves compassion.
To be tender with ourselves.
I want them to know that I—and they—don’t have to pretend.
To be well
To be strong.

It is enough to just be.

12/18

Grief and hope.  They can live together. I don’t have to be done grieving to engage in the practice of hope. But I do need a practice. For grief and for hope. I picked up Let This Radicalize You by Kelly Hayes and Mariame Kaba again. I read a chapter “Grief and Hope Can Coexist” and it broke me open. It touches on so much. I was recently writing about the difficulty of dealing with cancer: the amputation of my breasts, the loss of my nipples, the decimation of plans for my life…all of it. And how my personal grief is compounded by the collective grief of the ongoing genocide of Palestinians.

This chapter touches on cancer, parenting, Palestine, grieving mother nature. And each story is one of both grief and hope. The pages were drenched with my tears.

Grief and hope must be held together. ‘Together’ serves a double purpose here. As in the two must coexist and together as in community.

I feel fortunate to have so many people who have given me just that. Who have sat with me. Listened to me complain. Talked to me during chemo. Held me. Binged watched TV with me. Brought me and my family food. Laughed with me. Cried with me. Cared for my children. Sent money for food, random bills, or a date night.

Truly the only good thing that has come out of this whole ordeal was the reminder that I am a part of a larger community—deep and wide—that cares for me. 

12/19

I keep having the desire to feel like myself. Every treatment milestone, I have this expectation. This longing to get back to “me.” But the feeling never comes. I was texting a friend about this, and he wrote back something so profound.

“…Maybe part of your journey isn’t feeling like yourself in a past tense way but feeling out a new part of you—learning to sit with your previous self and appreciate a developing self at the same time.”

Just writing that brings me to tears. I’ve had so many different lives. So many iterations of myself and I have the opportunity to be intentional with this new version. I can be intentional about my values—what they are and how I live them out day to day. I can be intentional about my relationships, my words, my thoughts, my parenting, my love, my work, my time, my personal and political commitments, my grace, my self-compassion. I can move in the direction of the person I want to be.

This can be my practice of hope amidst the grief.

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Thank you for holding me this year. May 2024 be more kind to all of us. And if it is not, may we continue to hold and care for one another.

In solidarity and love,

Rebekah

Why do we still use 'race' in our medical tools?: My experience with VBAC racism

Without any examination of my body, the doctor told me that I was likely “not a good candidate for a VBAC.” In shock, but not wanting to come off as an asshole, I responded “that’s interesting because my doctors at Kaiser said I’d be an excellent candidate. I’m concerned that the physicians here are generally unsupportive of VBACs and—”

“Well, we’ll let you do what you want. We won’t force you.” She cuts me off. 

Yes they will.

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VBAC stands for “Vaginal Birth After Cesarean.” Cesarean deliveries (or c-sections) are medically necessary in some circumstances, but in the U.S., birth workers (including some physicians) are concerned that medically unnecessary c-sections are occurring too often. After much thought...and a lot of reading and reflecting, I really believe my c-section was unnecessary. 

Photo of me trying to rest after being told my labor failed to progress and that the best option was to go into surgery for a c-section.

The birth of my first child was filled with mixed emotions. I’ve not shared publicly about it yet but it was traumatic. It included 38 hours of back labor, excruciating spinal pain, an epidural, dilating to 8cm (with the ultimate goal of 10cm), and an unexpected c-section. After all my preparation and that hard work during labor, I felt absolutely defeated. A c-section is a major abdominal surgery. My recovery was long and painful. Picking up my newborn, sitting up, bending over, and showering were all challenges for me in those early weeks. 

The saving grace for me was that my OBGYN said that I shouldn’t worry about a repeat c-section if I chose to have additional children because, given my history, I’m an excellent candidate for VBAC. So how did this other physician who I’d never met before get the idea that I’m not likely a good candidate just by looking at me?

Well, it seems like the US is the only country that uses ‘race’ to predict VBAC success rates or the likelihood that a woman will successfully have a VBAC. I found this nifty calculator online. 

The problem is that, baked into the VBAC calculator, there is an underlying assumption that something is biologically different about Black people’s bodies that makes us less capable at having a VBAC than other people. 

According to this calculator, a Black person has a “predicted chance of vaginal birth after cesarean” 28% lower than a white person with the same characteristics. It’s important to note that they are developing a new calculator without race and ethnicity variables. But what work—what damage—has the calculator already done? 

Screenshot of VBAC calculator. Grobman WA, Lai Y, Landon MB, Spong CY, Leveno KJ, Rouse DJ, Varner MW, Moawad AH, Caritis SN, Harper M, Wapner RJ, Sorokin Y, Miodovnik M, Carpenter M, O'Sullivan MJ, Sibai BM, Langer O, Thorp JM, Ramin SM, Mercer BM; National Institute of Child Health and Human Development (NICHD) Maternal-Fetal Medicine Units Network (MFMU), "Development of a nomogram for prediction of vaginal birth after cesarean delivery," Obstetrics and Gynecology, volume 109, pages 806-12, 2007.

We know that there are racial disparities in cesarean deliveries. People of color and especially Black birthing people are given unnecessary c-sections more often than white people. So to include race in the calculation not only normalizes the disparity, it actually perpetuates it if practitioners are using such tools to determine whether or not women are eligible to attempt to deliver vaginally. It’s a circular self-fulfilling prophecy. You give Black people more c-sections, then when they want to VBAC, you tell them the success for VBAC is less likely because you give them more c-sections — thus, resulting in more c-sections. 

The VBAC calculator can be situated in a long history of racialized medical tools. On their face, these tools “adjust for race” to support decision-making processes for physicians and other healthcare providers. However, most were developed with the premise that race tells us something about our biological makeup—or genes. It does not. But because they are designed by humans in the social world, these tools reflect the social and political inequities that determine our relative risk for disease. So, VBAC calculators tell us more about our society’s racist propensity to give Black birthing people repeat sections than it does about Black people’s ability to deliver vaginally. 

VBAC disparities have broader implications for maternal health as Black individuals are much more likely to die during and after childbirth and repeat c-sections increase the risk of death over time. One jarring example is the story of Kira Johnson who, after her second c-section was allowed to bleed internally for hours leading to her death. Her husband tells the story of how the medical staff ignored his calls for immediate attention and by the time they finally came in to help, it was too late. When Kira was finally taken in for surgery, she died immediately. 

Again, there are medical reasons to undergo a c-section. But there are also a lot of complications that can arise from repeated c-sections. None of the doctors I’ve seen so far cared to talk about any of those risks but spent a great deal of time warning me about the risk of uterine rupture if I attempt a VBAC. 

After that infuriating visit with the “you’re not a good candidate” OBGYN, I spoke to a friend of mine who is studying to become a midwife. She recommended that I ditch the OBGYNs at the clinic I was attending and instead make the midwives my primary prenatal providers. 

My first visit was fantastic. When I asked the midwife about VBAC support, she was not only supportive but enthusiastic. She checked my medical record from my first delivery to see if I had a particular type of incision. I did. 

She said “Yep! That’s all I needed to see, we’re happy to support you on your VBAC journey. What other questions do you have?” 

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We have to stop using race and other proxies for race (e.g., education, neighborhood, etc.) in these medical tools and assessments because they are more harmful than they are informative. If we’re interested in health equity as a goal, these “race adjustments” are in our way.