Improve The Health And Healthcare of AYA Cancer Survivors

people holding hands

Lacuna Loft’s very own Mallory Casperson is an investigator in a new study with researchers at Kaiser Permanente to improve the health and healthcare of adolescent and young adults (AYAs) who may have had cancer. We need to hear about cancer experiences like yours to help shape our research. Topics will include your experiences with medical care, your life experience, and your thoughts on research participation.

We would like to recruit 30 AYAs to participate in a sixty-minute telephone interview. We will talk about cancer experiences and what researchers should know.

People who complete an interview will receive a $40 Target, Amazon, or Starbucks gift card for their participation.

If you are interested in participating, please click on the following link to answer a few questions to see if you are eligible. If you are eligible and selected, a member of the study team will follow up with you to schedule your interview.

Click here if you’re interested: https://bit.ly/2SU9aU8

With sincere thanks,
Marlaine Figueroa Gray, PhD – Kaiser Permanente Washington

Mallory Casperson – Lacuna Loft

Book Club Discussion

It’s officially time for the young adult cancer book club video chat book club discussion!  We’ll be hopping on Zoom, Monday, June 28th at 7 pm ET / 4 pm PT to chat all things The Cancer Journals by Audre Lorde! We’ve been reading your blog submissions and we love how much you have loved this book! Join our online Zoom discussion and chat with us IRL (sorta 🙂 ).

Make sure you’re on the Book Club email list (check your preferences here!) to snag the Zoom link! Questions on how to get on the list? You can reach out to aerial@lacunaloft.org!

Happy reading!

P.S. Want to read along with other participants? Check out reactions from Week 1, Week 2, Week 3.

The Cancer Journals, Week 3!

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading The Cancer Journals by Audre Lorde!  Read our participants’ reactions and follow along with us each week as we read through the book! Caution, spoilers below!

Catch up on Week 1 and Week 2.

Week 3: Chapter 3!

By Christina K.:

Audre Lorde is a woman I have revered for years now for her writing on race. Through The Cancer Journals, I’m encountering Lorde in a new way: as a cancer patient. Her voice as a feminist, activist, and gay Black woman is ever strong and present in this work. Needless to say, she has given me a lot to think about, now over forty years since parts of this book have been published.

In a way only she could, Lorde points out that this practice points to so many broken systems in America. By using a prosthesis, she argues, women are protected from grappling with the post-mastectomy identity (an issue which many of us cancer patients know well.) Even her own surgeon’s office and the women who counseled Lorde in the hospital room post-mastectomy spoke only to the virtues of the use of lamb’s wool and seemed almost offended by her assertion that she did not wish to use it. I cheered her remarks that the prosthesis seemed more for others than for her. I have said in my own life the difficulty of being a cancer patient is that others don’t want to confront their own mortality and so they brush aside my comments about how awful the whole experience is. Over and over again, Lorde asserts that the practice of using this prosthesis undermines the strength of women’s ability to grapple with mortality.

When she wrote that these women also talked about “the bright side of things,” I recognized the toxic positivity I’ve seen as a patient as well. There were so many moments that I noted in my copy of the book going “yes! This!” There are certain truths which never fade about the cancer experience.

But I found myself – gasp – disagreeing with parts of what Lorde says about the detriment of using this prosthesis. Part of Lorde’s argument – that women need to see each other as patients out in the world for a feeling of solidarity and community – is now partially overcome by the internet. Even the most rare of diagnoses (myself included in that group) can now search tags on Instagram and find a group of people who have shared experiences likely similar to mine. But beyond that, I wonder what Lorde considers a necessary line to draw. When my hair was changing during treatment, I wore a wig. Not always for the benefit of others, though not getting looks of pity was pretty lovely, but for my own confidence boost. If we know that there is no going back to a pre-cancer self, then why not choose to make a change which deflects conversation at the grocery store? There is zero judgment to be placed on women who choose to remain without reconstruction or other enhancements to mask the experience of a mastectomy. But in the same way, I feel no judgment should be placed on women who choose reconstruction. Lorde didn’t cast judgment, per say, but she seems to imply that women cannot be self-actualized until they see themselves as changed. The quest for what Lorde calls “accepting her new body,” will happen whether or not she’s taken time between mastectomy and reconstruction.

This selection of The Cancer Journals gave me a ton to think about. I began thinking about what actions I take for myself and what actions are perhaps more performative, more to make others comfortable. And truthfully, I’d like to think that is exactly what Lorde aimed to do: to encourage us to do the work.

By Adrienne G.:

I am surprised at how so much has changed – and not changed – since 1978. In conversations about how to approach my procedure in 2019, I experienced the same insensitive approach to women’s bodies as Audre Lorde, and I was gaslighted by my medical team. When I said, “I’m not sure I want reconstruction,” my oncologist said firmly, “Yes, you do.” My nurse navigator said sweetly and condescendingly, “Oh honey, yes you do.” My plastic surgeon said, “Some women find that decision very empowering, but what you have to realize is that the first thing people will notice about you will be your belly.” And here I was thinking it would be my face.

My decision was not a political one. It was not a middle finger to the patriarchy. I’d already had 2 years of surgeries and chemo infusions, and I was ready to do what I felt was the kindest thing for my body. I also do not wear my breast forms. Not as a statement, but because it’s just too damn hot. I can and do mourn the loss of my breasts. I often am frustrated and unhappy with my appearance and with how clothes fit. But I don’t for a moment regret my decision.

I did almost changed my mind, but fortunately for me, strangers on Instagram were how I found the confidence and validation I needed to make the right choice for me. I think Audre Lorde would have found a community of support, as I did, through social media searching for #flataf, #flattiesunite, #flatfashion, #flatclosurenow. Without this online community, I’m not sure I would have been as strong as she was.

By Xenia R.:

I had no problem reading this entire book and was really taken by it however when it came time to submit my part for the book club, I hit a brick wall.

It was difficult for me to process a book that I felt is the most realistic description of what going through the cancer journey is like, especially for me. I was diagnosed with endometrial/uterine cancer when I was 31 and relapsed at 34. And during that time I felt so alone and as much as my oncologist cared about me, I was going through this process.

Similar to Audra describing her stages of coming to terms with losing her breast and in turn becoming more of a whole person, I feel that having a radical hysterectomy has redefined me and I am more passionate about women having access to mensuration products and the normalization of that entire process, even though I am not going through it.

Audra describes her lack of roles and how isolated she feels, which is something all AYAs can relate to.

As she describes the steps of her breast cancer treatment, surgery, to reconstruction she realizes that everything happens so quickly that there is no time or space for her to exam her true feelings.

A sentence really resonated with me – “I have lived it, and survived it, and wish to share that strength with other women.” This really resonated with me and the advocacy work that I do.

The passion that Audra had for her life and fighting for her voice can be felt in the text.

Then join us on Monday, June 28th to discuss the book with us over Zoom at 7 pm ET/ 4 pm PT! (If you’re signed up here to receive updates about the ‘book club’ then you’ll be sent the Zoom link automatically!)


Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!

The Cancer Journals, Week 2!

black woman reading book

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading The Cancer Journals by Audre Lorde!  Read our participants’ reactions and follow along with us each week as we read through the book! Caution, spoilers below!

Catch up on Week 1!

Week 2: Chapter 2!

By Megan F.:

This section resonated with me on the topics of intimacy, community, identity, and grief – I loved it all. I immediately highlighted part of a journal entry on page 17: “I’m so tired of all this. I want to be the person I used to be, the real me.”

Lorde discusses the push and pull of identity while having cancer – being the person you want to be and the person others expect you to be. She also discusses how those expectations are different based off her own identity. I especially resonated with the section where she talks about separating herself from decisions she had to make about her treatment and treating them as “intellectual problems.” Most of all, I was surprised with how much of her own experience that I could find pieces to relate to, and how much I learned while reading this.

By Amnol D.:

This was a beautifully written work of literature. It was an interesting read as a blood cancer patient and stem cell recipient, whose hair is the only visible aspect of all I’ve been through. There were aspects of Lourde’s story that were relatable and others that were not. The start of Audre’s experience was very relatable – when you want to be the “old” or “real” you (pg 17). And even as we go through treatment “the familiarity with the procedures had not lessened my terror” reminded me of the slight bit of anxiety I felt before a bone marrow biopsy or the pressure to remain still during a lumbar puncture, even after receiving more than a dozen. Audre’s need for “negative silence” reminded me of the days I didn’t want visitors or said no to visitors because I needed a moment to myself and for my thoughts. They weren’t all necessarily negative but the silence of not having groups of people in your hospital room at once was needed on occasion. I loved having friends to visit but some days I just didn’t have the energy. This connects with Audre’s idea that “first you hurt, then you cry.” It took me months before I had my first real cry, when what I’d been through and was still going through was slowly starting to finally hit me and I couldn’t help feeling the frustration of having to go through the side effects of treatment.

There were two other quotes that I really liked and thought could be relatable to non cancer patients as well. “The world will not stop if I make a mistake” (pg 40). This is something I felt deep as a perfectionist and have learned throughout this journey. Additionally “the fear we may feel to empower” us is something that anyone might see as inspiration.

By Anonymous:

The book The Cancer Journals by Audre Lorde is written with poignant emotion. Her heartfelt reckoning with her cancer journey is relatable to the human condition, as well as my own experiences with cancer. The heartbreaking realities of her condition and mindset were eloquently explained, shedding light on the lived experience of a cancer patient. The writing felt intimate, and honest. I was moved, over and over again by her sincere interpretations of her illness. I would recommend this book to all those who wish to understand chronic illness, hope and strength. The power of her words made me go back and reread, as I tried to let her wisdom soak in. It is a beautifully inspiring book in every way.

By Charlene C.: 

As I’m reading this chapter it’s bring up a lot of my own story with cancer. I, too, am a person of color with a cancer diagnosis. I remember how alone I felt in the beginning and how I wanted someone that looked like me to talk to and share experiences with. It was very isolating to look around and see nobody that looks like you.

As I was reading this chapter it brought me back to the beginning of my journey. I remember the fear and uncertainty that I felt. The millions of conversations that I had with myself about treatment options and the possible outcomes. Think about death for the first time in my life. I find this book well written and it is an easy read.

By Mel B.: 

Some of the journal entries were very relatable going through surgery and treatment. I had breast cancer but did not have a mastectomy so I really couldn’t relate to that.

When I was diagnosed I could totally relate to the 4th paragraph on page 17, “I’m so tired of all of this. I want to be the person I used to be, the real me. I feel sometimes it’s all a dream and surely I’m about to wake up now.” I said this exactly so many times in the beginning all I could think of was this can’t be real.

She spoke about being a black lesbian feminist which I can not relate to. I’m sure it was difficult to deal with this disease in the 70’s with all the racial disparities and inequalities. I’m sure she faced this along her journey. She spoke about feeling alone. I, too, could relate to that. I was diagnosed when I was 33 and none of my friends had ever been through anything like it. I relied mostly on older women and my friends’ moms because they went through it but not at the age I did. So, sometimes I could relate to them but often times not.

Thank god for my family and friends. You quickly find out who your true friends are when you go through something like this. When you think you have the best friends in the world and they are no where to be found when you are going through a situation like this, it’s tough. Time definitely heals. One of my friends once told me “God gives the toughest battles to his strongest soldiers”. My entire experience has definitely made me a much stronger person today.

By Kate B.:

Audre Lorde’s cancer journal entries themselves really resonate with me. So many of her feelings are familiar friends from my experience of this disease: the disbelief, the anger, the grief, as well as feeling “tender in the wrong places.” I am not a breast cancer survivor but Lorde’s fear that she may be “losing her breast in vain…. though it was a price I was willing to pay for life”- was a feeling I struggled to reconcile. Rectal cancer required me to have a life-altering surgery that gave me a permanent colostomy. It was a surgery to prove a negative, and though the pathology showed no evidence of disease following chemo, radiation, and that surgery – I found myself a year later with a metastatic recurrence that is considered chronic.

While like Lorde, I’m “forever reminded of my loss” (of a rectum, in my case) and that I had, and may likely always have, cancer, I also live with a new body part that I hoped would be my lifeline and a get-out-of-cancer card, although it turned out not-exactly to be. I’m struck by how the feelings I’ve experienced are similar though my journey is quite different from Lorde’s. She had one biopsy that doesn’t find cancer, and somehow feels moderately prepared or prescient when her second biopsy shows malignancy. It’s hard for me to imagine having such radical surgery within days of diagnosis. It took me weeks, at least, to figure out a treatment plan… I had a year to contemplate and come to terms with the ostomy surgery.

Finally, I’m super inspired and energized by how Lorde tackles topics of pain and mortality. She claims the “warrior-hood” of fighting cancer and that our pain gives us strength. I love the line: “once we accept the actual existence of our dying, who can ever have power over us again?” Before The Cancer Journals, I hadn’t read any cancer-lit, as it felt too close to home. I’m glad this was the first book I ventured to. It was full of wisdom and inspiration that makes me feel courageous in a new way.

Join in next Monday for the comments and discussion on chapter 3! Then join us on Monday, June 28th to discuss the book with us over Zoom at 7 pm ET/ 4 pm PT! (If you’re signed up here to receive updates about the ‘book club’ then you’ll be sent the Zoom link automatically!)


We will talk about a few chapters each Monday until the book is done. If Monday happens to be a holiday, then the post will publish on Tuesday. Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss. We’ll also have a video chat book club discussion at the end! Join in, in the comments every week! Also, there will probably be spoilers so read along with us! Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!

The Cancer Journals, Week 1!

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading The Cancer Journals by Audre Lorde!  Read our participants’ reactions and follow along with us each week as we read through the book! Caution, spoilers below!

Week 1: Chapter 1!

By Jessica B.:

I was interested in reading this book because it seemed like Audre Lorde had a story somewhat similar to my own. I too am a breast cancer survivor who found a lump during a routine self-exam. However, our similarities clearly end there. To be honest, I find it difficult to write a review of this section of the book because I was so bothered by some of the things that were said. In the foreword, we’re told the Lorde was given a hard time by her cancer center because she hadn’t gotten reconstruction after her mastectomy and didn’t want to wear a prosthetic. In this brief introduction to her story, I was outraged on her behalf. However, in the Introduction, my opinion changed. After a series of journal entries that I struggled to read due to a lack of context, Lorde criticizes women who chose to get reconstruction or to wear a prosthesis because she thinks it’s a “way of keeping women with breast cancer silent and separate from each other.” She sees it as a “cosmetic sham.” I cannot support this statement. How dare she criticize how other women choose to deal with their diagnosis! If a woman chooses reconstruction or to wear a prosthesis, or just to remain flat, that’s her choice. It’s not Lorde’s place to criticize or to act as a voice for all breast cancer survivors. Chapter 1 is about overcoming fear and using
your voice, but since Lorde chose to use her voice to be critical of other women’s choices, I had a hard time really caring about this message. It is important to speak out about things that are important to you, but you still have to consider how those words affect others. Words don’t exist in a vacuum. They can hurt even when you have the best of intentions.

By Sarah H.:

Forward
Audre Lorde discovered her breast cancer in 1978. In the forward, you get the feel for Audre, her determination, and also her anger. Learning of her mastectomy and decision not to have reconstructive surgery is something I admire especially for the time that it happened. Today we see a good mixture of people who do and do not get reconstructive surgery and while there is still a push for reconstruction, I think her struggle with judgment was more pronounced than it is today. Before knowing whether or not I would need a mastectomy (I ended up not needing one), I met with surgeons to go over my options if I did. I made the decision that if I needed a mastectomy, I would not have reconstructive surgery. The pushback from (male) medical professionals was unbelievable. Being a young breast cancer patient, they felt the need to tell me that I would regret not having breasts, because “what would happen if something happened to your husband and you started dating again?”. As Audre stated, when the Prime Minister of Israel is shown with his eyepatch, he’s considered a warrior. So why should a woman with a mastectomy be considered any less?

Introduction

I will admit, this is not the type of writing I typically read, and reading the introduction was a bit tough for me; I had to reread it a few times. The introductory kind of put me off a little. There were times I couldn’t follow what she was angry about: cancer, being a woman, a lesbian, black, something else? I would think I’d be following the entry and then realize I was wrong. There were a few entries I could definitely understand; the lack of hope, the missing your old self. I’m sure many if not all cancer patients have had those feelings, fleeting or long-lasting.

One thing that really stood out to me was it felt like she was putting down people who chose to “go about business as usual” and didn’t necessarily feel the same as her to shout their frustrations from the rooftops. Everyone deals with things differently, especially something as life-altering as cancer. That feels equivalent in today’s time to judging someone because they didn’t document their cancer journey on social media. I understand it was a different time and while only 30ish years ago, many things medically and socially have changed since then. I just can’t get over her judgment of those who chose to “hide behind the mask of prosthesis or the dangerous fantasy of reconstruction”.

Chapter 1

I feel this redeemed Audre a little from the introduction to me and I hope it continues. In this chapter Audre acknowledges after a second cancer scare, that she found what she regretted most was not using her voice to stand up for herself, her pain, her fears. She felt it was not only important for her to have her voice heard but believed it was important for everyone’s voice to be heard. To not let fear or anger keep you from it whether it’s having your own voice heard or learning from others. Especially in today’s times, it is important to not let fear hold us back from learning from others. The following paragraph from Chapter 1 has been highlighted to be referenced in the future. I found it really powerful and so full of truth:

And where the words of women are crying to be heard, we must each of us recognize our responsibility to seek those words out, to read them and share them and examine them in their pertinence to our lives. That we not hide behind the mockeries of separations that have been imposed upon us and which so often we accept as our own: for instance, “I can’t possibly teach Black women’s writing – their experience is so different from mine,” yet how many years have you spent teaching Plato, Shakespeare and Proust? Or another: “She’s a white woman and what could she possibly have to say to me” Or, “She’s a lesbian, what would my husband say, or my chairman?” Or again, “This woman writes of her sons and I have no children.” And all the other endless ways in which we rob ourselves of ourselves and each other. 

By Anonymous:

As a breast cancer survivor, I really appreciate that there’s this first-person account. It’s my first time reading a non-fiction book on breast cancer.

Audre went through a single breast mastectomy in 1979. It seems like one of her main goals with the book, at least with these chapters, is to speak about her experience and not hide in shame. As much as breasts are still a subject that some of us don’t want to discuss publicly, I imagine that it was a taboo subject forty years ago.

As I read through her experience, I’m filled with gratitude for how much progress we’ve made in the field of breast cancer. It seems like she didn’t have an option to get a biopsy prior to her mastectomy. A lumpectomy doesn’t seem to have been an option either. It also doesn’t seem like reconstruction was an option to the extent that it often is today.

I resonated with her journal entry where she wrote that she lives with the constant fear of a recurrence of another cancer. In another journal entry she speaks of how fear will take over her ability to focus, and her fears make her jump to scary assumptions such as a cough is lung cancer or a bruise is a leukemia. I think that most of us experience this, or have at some point. While MyHealth and Google are not my late-night friends, I can imagine how much worse it would have been without all the medical advancements that we now have.

Despite the fears and uncertainty, she decided to move on and focus on her work and her voice.  At this point, it seems like she had a mastectomy and despite a high chance of it being malignant, the tumor was actually benign. I don’t imagine that’s all there is to her story, or else I don’t think we would have a book called “The Cancer Journals”.

By Kayla V.: 

From the foreword, I appreciated the up-front of anger as an emotion displayed, and then again in the introduction. I can relate to putting voices to our feelings in order to respond accordingly and appropriately rather than bury those emotions, thoughts, and feelings down to a place where they manifest into more trauma or hurt. Another emotion discussed was fear, and I also can relate to that as I am living my life through the fears of it all as well. The comparison that fear can act as another malignancy got me thinking about what other aspects of my life are acting as malignancies.

The part that stood out the most to me was reading and recognizing that all of my/our work does not begin with my/our birth and does not die with my/our death. This creates and acknowledges the significance of being a part of something larger than ourselves. I agree that silence does not protect us and there is comfort in hearing a similar story, which has also encouraged me to share my story in hopes that it will comfort and empower others.

By Megan S.: 

Forward, Introduction, Chapter 1

Audre Lorde’s discussion of fear struck me most in the opening of her book. “Sometimes fear stalks me like another malignancy… A cold becomes sinister; a cough, lung cancer; a bruise, leukemia.” Lorde puts language to the vulnerability that cancer made me feel, giving me permission to feel fear but live on anyway. My favorite line of the introduction is “When I dare to be powerful, to use my strength in the service of my vision, then it becomes less important whether or not I am unafraid.” I feel afraid that my cancer will come back, but this reminded me that having fear does not prevent me from having strength and doing good in the world. She reminds me that I can be a full human, not defined only by my cancer.

Lorde speaks aloud the uncomfortable parts, about mortality. “For to survive in the mouth of this dragon we call America, we have had to learn this first and most vital lesson- that we were never meant to survive.” Our society tries to silence her because of her identities- Black, lesbian, cancer patient, woman- and because of this she speaks louder. “If I can look directly at my life and my death without flinching I know there is nothing they can ever do to me again.” Oppression does not get the best of her, and neither will cancer (even in death). I will never understand how it feels to be Black in America, but I do understand the feeling of seeing your own mortality, and living in spite of it. As Lorde puts it, “I am not supposed to exist. I carry death around in my body like a condemnation. But I do live.” This book was first published in 1980, but the theme of oppression feels so relevant today. I wonder what Lorde would think about America in 2020, and I imagine she might choose to speak up for the community around her. I am looking forward to reading on and hearing more of her powerful words!

By Sarah L.:

Forward – Page 16
This is a very different book from some of the other novels we have read recently in the book club. Instead of a relatively recently written fiction story, it’s a blending of journal entries, memoir, and essays, written by Lorde in 1980. Given the fact it is over 40 years old, and cancer treatments, etc have changed so much since then, I wasn’t sure before reading how relatable it was going to feel, but there was so much that felt familiar. To highlight just a few things that really resonated with me:

“What does it mean to claim for ourselves a sense of wholeness and visibility when the world insists on us being hidden or disguised” (pg. xiii)

This quote in the forward really resonated with me. As someone with terminal cancer, I have become really aware in the past months of the ways in which the world dislikes seeing death and desperately tries to distance itself from it. From distancing language (“pass” versus “die” for example) to beliefs that the dying patient should smile, wear wigs, try to “look normal” etc it can feel exhausting trying to keep up appearances sometimes, and I really appreciated both Tracy K. Smith’s comments in the Forward and Lorde’s comments in the book proper. I’m not sure I am quite as strong in my views as Lorde (who seems to suggest in these first pages at least that trying to hide the fact you have cancer is always a mistake), but I do think it would be a relief sometimes to be able to share a little more of the reality of what I am going through and not feel like I need to make my experience more palatable for other people.

“I must let this pain flow through me and pass on. If I resist or try to stop it, it will detonate inside me, shatter me, splatter my pieces against every wall and person that I touch” (pg. 4)

This was one of the best descriptions of pain that I think I have ever come across. In my case, there’s the normal background pain, and then there are these waves of pain that seem to come out of nowhere and take my breath away. And there is nothing to do but take medications and wait for them to pass. But always there is this feeling that if the medications don’t work or the pain continues at the same level that I will shatter or explode. Like my body is struggling to hold in the pain, and it could suddenly rip me apart without notice.

The idea of fear versus anxiety. The one “appropriate response to a real situation”. The other “an immobilizing yield to things that go bump in the night” (pg 7).

I think this is probably something many cancer patients can relate to. The complex relationship between appropriate fear and anxiety is sometimes appropriate but sometimes threatens to overwhelm in unhelpful ways. For me, at least, so much of my cancer experience has been trying to find a balance between the two. Working out what is appropriate and helpful, and what is unhelpful. And then the far more complex task of trying to get the unhelpful emotions under some sort of control. This relates also to Lorde’s comments on page 8 about the fact that once you have cancer the smallest things – an unexplained bruise, a small cough, or a low-grade fever – can suddenly become extremely anxiety-provoking in new ways. And sometimes, in trying to manage the anxiety, I know I have also gone too far the other way – refusing to call my oncologist’s office when I had a fever because I didn’t want to be admitted to hospital, and rationalizing it to myself as “it’s probably nothing, I’m probably just being anxious.” It’s such a fine tightrope, complicated still further by the fact that in addition to all of your own emotions, cancer patients are also often trying to help with the emotions of everyone else in their lives as well. Trying to calm down over-anxious friends and family. Trying to help other people understand what is going on when often just thinking about it causes severe anxiety for you and the last thing you want to do is talk about it over and over. Being asked by other people for “just a little more information” without them realizing that providing that little bit more information might be more than the person with cancer can cope with at the moment. Even if it seems so simple from the point of view of the loved one. Cancer really is a rollercoaster of emotions, and it was nice to see that discussed so clearly by Lorde.

By KM H.:

Let’s start with the forward, by Tracy K Smith, which sets up the book for us. She gives a small bit of background on Lorde, noting that she was a Black lesbian woman, and furthermore noting that, at the beginning of 2020, that the attacks against marginalized people have not been vanquished within our society.

At the beginning of 2020.

Only folks who are willfully ignorant or living under a rock haven’t seen the reports about how Covid-19 has disproportionately impacted people of color. Marginalized people are more likely to work low-paying jobs, are more likely to not have access to healthcare, are more likely to not be believed by doctors. These factors combine to result in a poorer patient outcome—not due to any fault of the patients, but because they of the society in which they live—one that systematically deprives them, ignores them, beats them down.

The situation is pretty much the same for cancer patients of marginalized backgrounds. Doctors ignore Black folk’s pain and symptoms. Queer people face discrimination and misunderstanding. These social/cultural stigmas have real-life impact on the bodies of these people. It does them harm. It’s a form of violence.

This is why I get so frustrated and angry when I hear about people trying to keep race out of cancer support groups. The notion that some aspect of identity—race, gender, orientation, ability, religion—can be divorced from one’s experience as a cancer patient is such an ignorant, privileged one … it blows my mind.

You cannot divorce identity from who you are as a patient because identity fundamentally alters your experience as a patient. It changes how you’re listened to. The treatments you receive. Even if you get treatment at all (don’t believe me? Go look up Robert Eads). To insist otherwise is the epitome of ignorance.

So, I have found these pages to be massively refreshing, because Lorde is crystal clear about her identity—a Black, lesbian woman—and relates how that identity affected her cancer experience beautifully.

There’s so much more to say about these pages. The prose is incredibly beautiful. And they’re rich—I have multiple post-it notes stuck throughout the pages to highlight different passages for me. Lorde talks a lot about life post-cancer, about the fear of recurrence—and, good lord, I still struggle with that. She talks about fear of death and how fear has kept her from speaking up. That she was silent for a long time because she was afraid of what would happen. And her response post-cancer is … you know what? I almost died. The very worst thing that could happen almost did happen to me. And being quiet out of fear got me nowhere. It didn’t protect me. So I’m going to break my silence.

I love that. And I need to do a better job of doing that—of speaking out, breaking my silence, and saying what needs to be said. I’m going to cut this short because I could keep going on, and I’m pretty sure that would bore you to death. There’s so much to relate to and dig into within such a small space of prose. I feel like I read 50 pages when I only read 16.

Basically, Audre Lorde is brilliant, and I’m looking forward to the rest of this volume.

By Brandie L .:

A few things jump out at me while reading the beginning of Audre Lorde’s The Cancer Journals.

The first is silence and how “silence has never brought us anything of worth.” Silence, and not succumbing to it, is so important to Lorde that not only is it mentioned in the introduction, but there is a chapter about it. Her thoughts on silence resonate with me so much. When I went through my cancer treatment a decade ago, I was in my early 30’s. I didn’t know anyone else who had cancer and felt lost much of the time. I turned to writing – both in a blog and making posts on Facebook about cancer and how it was affecting me and the family. Most people expressed gratitude that I was sharing or stayed silent. But a few people would pull me aside to tell me I needed to stop. That I was sharing too much. That things were too depressing. That I shouldn’t talk about complications because it could scare others. And I just didn’t understand! I knew much of what I was sharing wasn’t fun! Or beautiful! Or life is all sunshine and roses all the time! But, I was sharing my real life. And it confused me that people were asking me to stop. I didn’t though. I didn’t stop sharing. I shared the ups and downs, the good and the bad. Even when those things were out of balance. And I shared it for me because the words needed to get out of my head. I wish I could have read Lorde’s words back then! It would have given me more confidence to go forth and speak my story the best way I saw fit!

The second thing that jumps out. And that, as a fellow breast cancer patient, I appreciated her calling her mastectomy an amputation. Thank you! I am so tired of it being referred to as a “boob job” too much of the time. It is an amputation. Doctors literally removed a part of my body. Maybe people don’t think it’s essential, but it is a part of my body and that means something. It was a painful surgery and it changed my life. It was much more than a boob job and I’m tired of it being downplayed too often. And yes, I too, do miss my breasts at times. And no, I’m not vain. And no, I don’t believe that my entire self-worth was wrapped up in my breasts. But, my breasts were a part of me. Growing and changing during puberty. Changing during pregnancy. Breastfeeding my babies for over 3 years all told. The hours of finding the perfect bra when shopping. The awkwardness I felt when they first grew during puberty. A part of my body that had changed and grown and been a part of so many life events. Of course, I miss them! Of course, I am sad to lose them! And of course, I would make the same decision over and over.

I love that Lorde’s writing is giving me time to think over these things. Some which feel fresh in my mind (my last chest surgery was fall of 2020!) And some which are tucked away amongst memories, waiting for her writing to pull them out of me.

I can’t wait to see what the rest of The Cancer Journals pull out of me and give me time to think over.

Join in next Monday for the comments and discussion on chapter 2! Then join us on Monday, June 28th to discuss the book with us over Zoom at 7 pm ET/ 4 pm PT! (If you’re signed up here to receive updates about the ‘book club’ then you’ll be sent the Zoom link automatically!)


We will talk about a few chapters each Monday until the book is done. If Monday happens to be a holiday, then the post will publish on Tuesday. Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss. We’ll also have a video chat book club discussion at the end! Join in, in the comments every week! Also, there will probably be spoilers so read along with us! Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!

Finding Balance, Week 10: Chapters 54-Epilogue

woman at party on balcony

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading Finding Balance by Kati Gardner!  Read our participants’ reactions and follow along with us each week as we read through the book! Caution, spoilers below!

Catch up from Week 1, Week 2, Week 3, Week 4, Week 5, Week 6, Week 7, Week 8, and Week 9.

By Anmol D.:

Being 26, it’s been a while since I’ve read a YA book. But I loved Kati Gardner’s Finding Balance. Reacting to the last few chapters (chapter 54 through the epilogue), the ending was predictable but I loved it all the same. The way Jase finally opened up not only to himself but to his friends and Mari was pulling at my heartstrings. The way Jase had control over his story and announced his cancer at the Gala resonated with me. As an ALL patient and survivor, I was also lucky enough to have control over my story. I told a few friends and family because as someone who brings the group together whenever we are all in town, it was going to be a bit harder to do that from the hospital. Though I was able to do it once, bringing together my high school friends and college friends with my amazing nurses (one of which was a cancer survivor around my age, who is now one of my cancer friends). But this was all to say that similar to Jase, I “announced” my diagnosis (and my treatment) as a form of advocacy. He did it for Camp Chemo, I did it to raise awareness and get more ethnically diverse donors on the bone marrow registry. Though, unlike Jase, with my diagnosis being at the age of 25, I didn’t get to go to places like Camp Chemo but have been able to gain some parallel experiences with young adult cancer advisory boards I am on. Hopefully, I am lucky enough to continue meeting other young adults that have gone through similar cancer experiences and can form friendships to Jase, Mari, and Davis (maybe on a First Descendants adventure, once COVID is manageable)!

By Mary Clare B.:

Chapter 54
It’s Christmas and Jase asks his mother if he can speak at the New Year’s Eve gala for Camp Chemo. She is surprised but says yes. He helps prepare for the gala by polishing silver for the event. While he’s getting everything ready, Mari comes in to practice going up and down the stairs in the ballroom. They talk briefly and are both a little bit shy but neither one seems angry or upset.

Chapter 55
Everyone comments that the ballroom looks like a fairy tale with all the twinkly lights. Jase is nervous, but he reflects that he’s feeling real happiness that he can breathe because of his new medicine. Mari is beautiful in her dress with an open back and Jase is all dressed up in a tuxedo. Jase really likes her dress. The ballroom is filled with family friends school friends and camp friends.

Chapter 56
Mari is surrounded by her camp friends who calm her nerves, but they want details of the breakup. Before she can give too many details it is time for the ceremony to begin. Mari is surprised to see Jase going to the microphone, she had no idea he would be introducing her. Jase explains what Camp Chemo is and reveals to everyone his cancer history. He gives a loving introduction to Mari and whispers in her ear thank you for teaching me balance.

Chapter 57

Jase is congratulated by his dad as he steps off the stage. He goes up to his school friends next and they all are somewhat dumbfounded and in shock by his admission of having cancer. Lindsay asks if he knew Mari before she came to their school. She wants to know if they were a thing. He says yes and answers some more questions. They slowly put all the pieces together and even connect that his heart issues are from cancer treatment. Lindsey feels betrayed and is angry with him. Jase responds by telling her off. Addison quickly confronts Jace about being a terrible person to Mari. Zeke reveals he knew all along, his mom is on the board of Camp Chemo. Chase then takes this opportunity to introduce his two groups of friends’ camp friends and school friends. Jase feels a huge sense of relief at having come clean. After all this, Jase and Mari go outside and have a kiss at midnight, without an audience.

Epilogue
Time jumps forward to another summer at camp. Jase and Mari are back to being a couple. They are playing capture the flag but this time they are winning. Jase concocted a plan to distract the other team by coupling up two team members who fall so dumb in live they can only concentrate on each other. The book ends with a joke about finding balance when Mari almost slips and falls.


Join us on Wednesday, May 12th for the live discussion with author, Kati Gardener! Make sure you’re on our Book Club email list for the Zoom link and all the details!

Finding Balance, Week 9, Chapters 48-53

Welcome to the comments and discussion of the Young Adult Cancer Book Club! We are reading Finding Balance by Kati Gardner!  Read our participants’ reactions and follow along with us each week as we read through the book! Caution, spoilers below!

Catch up from Week 1, Week 2, Week 3, Week 4, Week 5, Week 6, Week 7, and Week 8.

By Briana G.:

Chapter 48

Jase is finally telling his teammates about his heart condition, obviously omitting it may be due to his previous cancer diagnosis. As the coach walks in, he instructs the team to start practice and calls Jase aside. The coach tells Jase to be open about his medical history in the future and tells him he is not allowed back for a month. As Jase leaves, he remembers about Mari, and instead of heading to class; he drives home.

Chapter 49

Jase is at home with his worried mother, Olivia. He asks her about her journals from when he was in treatment. She mentioned how he was always sick, and each doctor thought he just had a cold. This was until a resident requested a CBC and they found his diagnosis. At the time, his father was in Germany trying to fly back home. His grandparents had traveled to care for Jase while his mother spoke with doctors and tried to learn all the medical terminology. Jase asked his mother if she had been scared during his treatment. Olivia explained how terrified she had been. Bone marrow aspirations, blood transfusions, religious faith was mentioned as Jase finally realized that he could have died. Olivia feared that her son could die from the treatment, infections, or side effects. She went and grabbed a photo album and journals she had made of the experience. His mom showed him a photo of the family when they found out Jase was in remission. He recognized his parents, but not the pale, bald boy in the photo. Jase began reading his mother’s journals but felt like he was reading a story of someone else. However, there were some passages that triggered some memories. He remembered some interactions with the doctor, when the doctor announced his retirement, and when he started going to camp how he felt like his own person for the first time.

Chapter 50

Mari is in the lobby of her ortho waiting to get her cast. She thinks about how it’s been a month since she spoke to Jase. She is called in to get x-rays on her arm. After, she is taken to a room and requests her brother and his girlfriend to join her. The doctor comes in and tells her she will get the cast removed, but shouldn’t walk for at least another week. The doctor saws off the cast, and Mari was able to move her arm.

Chapter 51

Jase is getting his echo done with Steve. Jase asks him questions on the echo, but it’s against policy for Steve to tell him till the radiologist sees it. Time passes and Jase is with his parents in the lobby anxiously waiting for results. Davis comes in and reassures Jase he doesn’t have to be there alone (without friends). To distract him, Davis asks if he wants to play video games. While playing, Davis asks about him and Mari. Jase reveals to Davis how he was a jerk when she first transferred and that he screwed up. Then John comes in and tells Jase they’re ready to go in. While Davis was still shocked at how Jase treated Mari, he offered his support by saying whatever happens it will be okay.

Chapter 52

Mari is with her mom and Giselle at a secondhand shop trying on formal dresses. While asking for a fitting room, the sales attendant sends her to a non-accessible room. Mari requests an accessible one, which ended up just being a bit larger with three mirrors. Mari asked for a stool or chair to sit on. The saleswoman returns with a paint-chipped metal chair. As Mari sits in front of the mirror, she mentions her insecurities. She tries on her first-choice dress which ended up being unflattering on the top and emphasizing her missing leg on the bottom. Her mom tries to reassure her, it’s just the wrong fit. Let’s try again. She tries on a red dress that fit better but did not have the same embellishments as the first dress. She tries on the last dress. This dress fit her perfectly, and they envisioned the accessories she could use with it. When checking out the sales lady gave them a big discount. Mari knew she just felt pity towards her but didn’t care since her salary from the bookstore was being used. Then she gets a text from Jase.

Chapter 53

Jase is sitting on Maris’ porch swing waiting for her to get home. As Mari enters Jase begins to apologize. She asks how he’s feeling, and about how his appointment went. Jase tells her the news that he will need to take daily medication and monitoring. Mari mentions his future with swimming, and Jase doesn’t seem to care about it anymore. Mari asks for an explanation of cardiomyopathy and what his number on the scale was. Jase says his number is 40, and if he monitors himself and lives a healthy lifestyle he may get better. Mari unexpectedly grabs Jases’ hand to comfort him.

By Christina K.:

Chapter 48-53

In these chapters, Jase has to come to terms with his friends from school knowing that he has something going on with his health. As someone who lives her diagnosis really publicly, I have these conversations down to a speedy elevator pitch, but I felt for Jase in these moments. I hate it when I’m unsure of what others know like Jase was with his Coach. But what struck me was when Jase’s friends didn’t comment on it much other than preventing his ability to swim for the next month. It goes to show that sometimes, we don’t give enough credit to the people in our lives for how they will take things.

Jase’s mom also shares her journal that she kept during his diagnosis and treatment. This book offered me a ton of insight into the challenges that pediatric survivors face – in particular, not remembering a ton about their treatment. I can imagine how that might leave unique anxieties, fears, or concerns later on in life.

The author really made Mari relatable in a lot of different ways. I enjoyed throughout the book, not just in these chapters, Mari’s great sense of humor. I saw a lot of myself in how we both use it as a coping mechanism. She’s just genuinely funny and seems to have the world’s greatest set of doctors. I also felt myself cringe with my own memories of dressing room woes and the general anxiety and loathing of shopping at that age, with such terrible overhead lighting. I appreciated how accessibility was so far from the store employee’s mind, and genuinely made me wonder why new employees are not required to go through an awareness training as part of their onboarding after being hired.

Overall, I think the last sentence of Chapter 53 really sums up these passages, “Cancer: the gift that keeps on giving.” This book really acknowledges that all of the teens from Camp Chemo are (presumably) out of active treatment, but still dealing with the after-effects of their diagnosis. I appreciated the nuance with which their stories were told and the different facets the author covered, which could help any Cancer Muggle understand the challenges more- as long as they are open to learning sugar doesn’t cause cancer.

 

Join in next Monday for the comments and discussion on chapters 54- Epilogue!

We will talk about a few chapters each Monday until the book is done. If Monday happens to be a holiday, then the post will publish on Tuesday. Once we finish the book, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss. We’ll also have a video chat book club discussion at the end! Join in, in the comments every week! Also, there will probably be spoilers so read along with us! Excited about the young adult cancer book club? Have any suggestions for future reads? Let us know!