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!

Finding Balance, Week 8: Chapters 42-47

hug

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, and Week 7.

By Brandie L.:

So … I don’t know about you, but I went into chapter 42 thinking “please let it just be panic or something simple. Please let it be panic or just something simple!” As if a mantra in my head will change the outcome of a book already written, printed, and distributed. As if, if I just really believe I can change the outcome for Jase! Because I want Jase to be happy and healthy. But maybe, just maybe, if my brain can affect the outcome of the fictional character, my brain can affect the outcome for other people.

And therein lies the gross truth that we all know much too well. We can not think away cancer – ours or anyone else’s and sometimes that just feels so unfair. And as Mari reminds us “Cancer doesn’t care how old you are.” Nor does it care how well-loved you are. Or how many friends you’ve got. Or how much goodness you spread. So no matter how unfair it feels, it doesn’t matter. Cancer is just a thing – without thought or feelings or emotions or rational thinking.

But back to Jase – we quickly learn while the cancer isn’t back (phew!), the cancer he can’t even remember is rearing its ugly head anyway and could be affecting his heart (ugh). Anyone else wonder if his heart issue is also causing him to act like a jerk sometimes? But also, isn’t it refreshing? Like, a person with cancer who didn’t have a life-changing epiphany and suddenly become a kind, caring, giving soul who never sweats the small things because they have the perspective of cancer to just knock all that stuff out of them? Because somehow cancer talk becomes inspiration porn. And I don’t know about you, but I’m over here dropping balls, saying the wrong things, getting angry and yelling – sometimes justifiably and sometimes (ahem, more times than not) unjustifiably. I can have a petty argument as well as the next person depending on the day! And I’m so tired of people who don’t even know me gasping in horror if I don’t act all saintly because I had cancer.

Um, I had cancer. It did not remove my humanness or my ability to err. Nor does it seem, to have done the same thing to Jase. Who is breaking Mari’s heart! And I’m ready to go with her brothers and teach him a lesson. Oops. There I go again, being mean, even though I ::gasp:: had cancer!

But oh my Mari. I love her mom and I love how her mom talks to her. Like yes, Mari, you are whole! And yes, Mari, you are a force! And yes, Mari, you are strong! Not because of cancer. Not because of having your leg amputated. She always was – and cancer and surgery and car accidents and nothing – is going
to change that about her. I wanted to be in that bedroom with her and her mom and just group hug them both. I felt that conversation in my heart as a mom and a daughter and a cancer patient and just as a human.

So, I’m going to end today with my mama side showing and quote Mari’s mom. To all of you, each and everyone one of you, “Don’t change who you are to fit in the world,” <insert your name here>, “Make the world change for you.”

 

By Sri K.:

Chapter 42: Jase goes off to get his x-rays while his mom and Davis wait for him. As usual, the procedure is somewhat cold and impersonal, and Davis is gone by the time Jase returns to see his mother in the lobby. However, he is called again to have an echocardiogram done. His mom is anxious and worried, with Jase wanting to lighten things up as always. Austin does his echo and then Jase and his mom head to the clinic to see Dr. Henderson. It is here that Dr. Henderson hands some unfortunate news to Jase. Because of the treatments he had undergone for his cancer as a child, he was experiencing a long-term effect of surviving childhood cancer: his heart was fatigued. Many of the symptoms Jase had been experiencing recently finally made sense. Dr. Henderson prescribes Jase to wear a Holter/event monitor and that he has to take it easy for the next month, i.e. no swimming. At the end of the chapter, as Jase heads in for his EKG, he’s experiencing disappointment, frustration, and fear about what has just happened.

Chapter 43: Mari is at The Grind and realizes that something is happening with Jase since he hadn’t returned her messages. When he does appear, Mari hugs him only to notice that he now has a Holter monitor and electrodes connected to his chest. While Jase lets her in about the latest news, he is still focused on trying to keep his diagnosis and health status secret from his team. Mari is trying to stay patient and supportive for him. Still, the way he sees her embracing her cancer and its effects as something similar to rolling out the victim-carpet hurts her. As she tries to convey how his directing his pain towards her hurts her, they slide back into an earlier narrative of the time they met at AP Chem, a time when Jase refused to acknowledge her. The chapter ends in a fight.

Chapter 44: When Jase goes home, he runs into his dad. They both have a very poignant moment, as his dad shares how he regrets the advice he gave to Jase about pretending the cancer was done and resolved. They discuss how it’s not healthy to forget what happened to Jase, or to pretend it didn’t happen. At the end of the day, cancer is only a part of Jase, not the entirety of Jase.

Chapter 45: Mari isn’t able to focus in AP Chem because of what just happened with Jase…wait…Jason. Mrs. Yother delivers the horrid news that the way things are going, Mari is going to fail first semester AP Chem, which means she can’t take second semester AP Chem. While Mrs. Y acknowledges that Mari is an inspiration and that her grade suffered because she had to transfer and miss school, it all lands flat since she doesn’t seem to truly understand all the exhaustion and recovery that Mari had to go through to be there, let alone all that happened with Jason.

Chapter 46: Jase comes back to school despite taking off immediately after the last bell to give Mari a ride like always. He finds Mari and they have another argument where Mari finally breaks about the way Jason has been treating her, his attitude about cancer and disability, and how she would rather be by herself, alone, being open and honest about her cancer than to deny what has happened to her in order to fit in with everyone else. Jase makes the horrible statement, “You use your cancer and amputation as a crutch,” which leads Mari to tears as Leo comes to pick her up. Jason is left standing watching them leave, worried about how his fear about his cancer is costing him Mari.

Chapter 47: Mari is back at home and super-mama Karen picks up that something is going on with Mari. Mari shares about what happened with Jase and the complexity of what her life might be like without cancer. Her mom reassures her that Mari is already whole and is an inventive warrior, though Mari counters with the fact that she’s had to get inventive because of the lack of choices and lack of accessibility. At the end of the conversation, Mari realizes she doesn’t want a prosthesis and conveys that to her mom, even as Karen encourages her to try but only because they care. Mari enjoys how her family loves her as she is and not for what she’s “missing.”

REFLECTION: I loved these chapters because, while Mari experienced so much anguish, I saw Mari come into her own power, holding Jase accountable for how he treats her and how he hurt her despite how much she loved him. She understood how embracing her cancer, embracing her amputation, displayed her strength to face her diagnosis and her survivorship head-on; she didn’t run away from what caused her pain and fear. I also appreciated seeing how Jase’s worldview and his approach to pushing his pain down, pushing the cancer away, wasn’t just his worldview but one that his dad strongly advocated for because he thought it would be better for Jase.

I struggle[d] with Mari’s and Jase’s relationship because I understand so much of how Jase reacts to his diagnosis; I did something very similar in terms of wanting to hide my health issues and health status from others, to pretend to the outer world that all is okay. However, whilst I turned my fear inwards, Jase turned his fear outwards in a way that hurt loved ones like Mari [which I don’t appreciate at all]. I’m now in a space in my life where I’m more like Mari, where I’m embracing my cancer and my consequent disabilities. That also means I worry, just like Mari, that others might see me as someone using my health as a crutch rather than as a way of learning to love and accept my body in each present moment. I worry that some loved ones in my life with Jasonian personalities might judge me like he judged Mari.

These words from Mari deeply resonated with me from pg. 283: “I don’t want your help. I don’t want your friendship. Because all it does is make me feel less-than…And I am not less-than.” I loved these words because no one who loves us should make us feel less than; we are all enough and deserve to be loved and appreciated just as we are.

Join in next Monday for the comments and discussion on chapters 48-53!

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 7: Chapters 36-41

swimmer diving into pool

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, and Week 6.

By Marie K.:

Chapters 36, 38, and 41 – Mari

We start after Mari was in a car crash, has broken her arm, and is temporarily recuperating at home. Aside: Is it just me or does it seem like car accidents feature prominently in novels to add drama? Or maybe it’s just the books I read (I’m thinking also of The Cast by Amy Blumenfeld and The Nest by Cynthia D’Aprix Sweeney)?

We are in an “on again” part of Mari and Jase’s relationship to start – Jase is being somewhat attentive by bringing school work, helping Mari with Chemistry, and being somewhat (it’s all very PG, which I appreciate) intimate with Mari. Mari is a typical teenage girl in some ways, and very much not in others – her blooming relationship is making her all “warm and fuzzy” at this point which, I think, would be just like a typical teenage girl. (I’m sorry, I really dislike romance and teen romance seems so much worse. My husband asked at one point if Mari’s feelings were typical of a teenage girl and I should admit here, given my comment above, that I honestly had no idea – I skipped that part of development, I think. It was a little hard for me to relate.)

Slight detour: On the topic of relationships: Mari and Jase’s seem like an abusive relationship. Jase is a jerk and, at times, ignores her, avoids her, won’t communicate with her, won’t stand up for her, and even ends up blaming her for his inability to deal with his cancer diagnosis as a child. Jase usually regrets it after a while and tries to make amends but ends up hurting Mari. Again and again. And then, Mari forgives him and lets him get past her defenses. Again and again. This cycle is not healthy (someone had to say it). I’m sure some people reading this book want this relationship to work out in the end but I wanted to see Mari find someone better, someone who doesn’t have all these hang-ups, who can be proud of being with her, and who doesn’t abuse her forgiving nature.

Anyways, back to the story and how Mari is not a typical teen: Mari having to deal with being an amputee has caused her to be atypical in some aspects of her life, such as being self-sufficient, and being an advocate for cancer patients/survivors and disabled people. Mari gets a wheelchair after the car accident so she won’t have to hop everywhere (not being able to put weight on her arms and therefore not able to use her crutches) and she acknowledges the irony of needing one after she transferred to AWP because she didn’t want to get one just to please the administration at her old school. We see her advocacy side as she, with her brother’s help, tries to educate an ignorant man on transit, when she could have just as easily told him off. That incident did not help with Mari’s anxiety levels though as she gets closer to going back to AWP after the car accident.

However, being back at school doesn’t end up being a showstopper because we skip ahead in the next chapter to game night at Mari’s. Mari gets to bond a little with her brothers’ girlfriends here and one of them, Caroline, agrees to help Mari with her upcoming lab (the continuing story arc/conflict of whether Mari will pass Chemistry or not). There is some gentle teasing from her brothers and we get a nice picture of a relatively well-adjusted happy family. No spoilers, promise, but I will say that at least none of that family dynamic changes. I do wish Mari’s family were a little more snoopy and a little more opposed to Mari’s relationship with Jase. Maybe they don’t want to be seen as overbearing. Overall, everyone seems to look out for one another.

Chapters 37, 39, and 40 – Jase

Jase has thrown a bit of a surprise party for Mari – friends and camp counselors are in attendance – to cheer her up after two weeks of being stuck at home. Jase doesn’t do a lot of talking at first, just listening. A debate springs up and Mari is able to defend her position on prostheses and “the happy cripple” very well.

Another aside: Why is that a thing? Everyone has good days and bad days and yes, we do often put on a “brave” face for the world, but why does the world expect that? Why can’t we have our bad days and be allowed to be angry or sad or whiney or whatever?

Anyways, Jase’s enjoyment of the party gets derailed when one of his/Mari’s friends from camp mentions the upcoming gala that Jase’s mom is planning, that will benefit Camp Chemo. In case you missed it, Jase has a huge hang-up about the gala and the possibility of being “outed” by his current school friends as a cancer survivor. I get it on one level – I don’t tell everyone my medical history either if I can help it. But I also don’t go to great lengths and deceitfulness to hide it either. Jase doesn’t seem to understand (yet) that there can be a happy medium.

Skip ahead a little and we’re at school again, Jase having picked up Mari at a transit hub. He’s running to swimming warm-ups and worrying about being there before his coach arrives. Jase has been having health issues lately with a racing heart, trouble breathing, tunnel vision/spots potentially leading to a blackout. Things finally come to a head at swim practice – he can’t breathe while doing laps and has to stop. His coach notices that something is wrong and he does what any coach would, which angers/causes anxiety Jase – he calls Jase’s mom.

You know where this is going: appointments and scans. These should determine what is going on with Jase’s health and maybe even result in something being done about it other than ignore the symptoms and try to hide them from everyone else like Jase did. We can certainly all relate to one or two parts of that. At least for Jase, his doctors know what to ask and what to maybe look for (the same can’t be said for all of us, unfortunately). Jase is having none of it and is rude and barely complies with the doctor’s requests/instructions. I’m sorry but Jase has a serious attitude problem. I’m pretty sure we all hate the doctor at times and have days when we jump down their throat but Jase takes it too far. His mom, coach, doctor, and others are concerned, and with good reason, but Jase is in denial and is a jerk to mostly everyone, with the exception of Davis who is volunteering at the hospital and stops by to chat with Jase. We don’t get answers yet, but we now know that something more than just an infection is wrong…

By Hilary W.:

Chapters 36-41 deal with that feeling many cancer patients know all too well – the return of concerning symptoms and uncertainty. It’s a feeling people who haven’t lived through serious illness can’t understand – the feeling of one’s body betraying them – so it’s interesting to see it normalized in this book. If anything, Finding Balance gives a peek into the young cancer patient’s experience and it’s valuable for both young adult cancer patients and non-cancer patients to witness.

By Alyssa S.:

I want to focus on two specific events that happen within these chapters that stood out to me.

The first is at the impromptu camp party at the Daily Grind. Noah gives Mari a hard time about not wearing a prosthesis. He tells Mari that if she wore one everything would just be so much easier. She tells him that prosthetics aren’t for everyone.

This really relates to the fact that nobody’s cancer journey is the same. Even if two people have the same or a similar type of cancer, or in this case that both have amputations a solution that works for one person might not work for another. Similarly coping mechanisms that work for one person may not work at all for another. The way cancer thrivers and survivors grieve differs from person to person, and how each person expresses their feelings is totally unique for each individual.

The second is when Jase has his “incident” during swim practice right before Thanksgiving break. His mom worries about the possible relation this may have to his childhood leukemia and other treatment.

In Jase’s case, it’s his mom that worries but really for young adults and adolescents with cancer histories, These kind of thoughts and stressors are all too typical for both us and our loved ones. As cancer warriors, this constant sense of worry is one of the reasons our cancer journeys are never really over.

By Stacy E.:

Chapters 36-41
Mari is coming to terms with having to use a wheelchair to get around. Jase and her have become closer and she can technically call him her boyfriend. At least she thinks so. After a get-together, Jase put together at the Daily Grind, Mari is ready to get back to school. Even if it is in a wheelchair. Mari rides the train halfway to school, escorted by her brother, and then Jase drives her the rest of the way. Mari is getting used to being back to “normal”, while her boyfriend Jase has a sudden setback. While at swim drills one day Jase noticed some very scary things going on with his body. Heart racing, breathing difficulties and feeling like he might pass out. After a scary episode in the pool that warrants concern from the coach, a phone call was made home. Jason’s mom Olivia was worried so she took him to the Cancer Center to be checked. Jase was not very happy, not wanting to admit that something could be wrong. Meanwhile, Mari is off spending time with her family and unaware of what is going on with Jase.

 

Join in next Monday for the comments and discussion on chapters 42-47!

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 6: Chapters 30-35

car crash

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, and Week 5.

By Anonymous:

I feel like the pace of the book picks up in this section. Jase and Mari spend Halloween together, have another almost-kiss moment, and partake in some cute banter while giving out candy. Jase ignores Lindsay when he realizes he wants to take Mari out on a date. While waiting for Mari at the cafe where Davis works, someone mentions a car accident and Jase has a horrible feeling. He takes off for the intersection, finds Mari’s brother, and drives him to the hospital. He’s on a lot of pain medication and has a broken arm, but to everyone’s relief, is going to be okay. Jase *finally* kisses Mari, and promises not to disappoint her again.

Jase has been reflecting on his cancer journey, and his ability to put it in the past and not have to talk about it to people at school–something Mari can’t do. I have a feeling like something is going to happen with him, like a recurrence, because he’s been having trouble breathing, and there’s a general anxiety in the air to go along with the upcoming gala. Jase says something very true: “Cancer makes all parents worried.”

There has been a fuss made over Mari not getting out of her hospital bed as a “fall risk,” and she feels helpless and confined. Her parents, however, must have been horrified when they realized she was in an accident. Parents worry and it’s horrible to watch their children go through such challenges, and not be able to protect them or prevent the struggle. I think it’s nice that Jase’s mom is trying to raise money for Camp Chemo, even though it stirs up feelings for Jase that he can’t express. I’m looking forward to Mari’s part in the gala and wonder whether the event will cause Jase to change his mind about disclosing his past in an effort to close the lid on that pain. I’ll be rooting for these two to come together as a happy couple.

Join in next Monday for the comments and discussion on chapters 36-41!

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!

Join The Next Young Adult Cancer Book Club

the cancer journals stacked

It’s time for another round of the Young Adult Cancer Book Club!

This next book club pick is The Cancer Journals, by Audre Lorde. Here at Lacuna Loft, we’re really excited to read this book together! The books are packed and ready to go and that means that it’s time for you to sign up to receive one of the 30 free books that we send out to young adult cancer patients and survivors in exchange for sharing your commentary on one of the book’s chapters.  Sign up here for your free book!

We’ll be sending the books out by the end of the month. The reading assignments (for what chapter we’d love your commentary on) will go out then too, and we’ll start sharing your commentary in mid-May.

Once this round of book club officially starts, there are several ways for you to be involved in the book club:

  • Read the book along with us and check out the Young Adult Voices blog each Monday, starting in February for the next book chapter’s installment!
  • If you get behind, check out this page for all of the posts for Round 12 of the book club.
  • If you’d like to contribute your comments about a chapter, email aerial@lacunaloft.org at least a few days ahead of the Monday when that chapter will be discussed, with your comments and a short bio of yourself.

Happy reading!!

Finding Balance, Week 5: Chapters 24-29

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, and Week 4.

By Kayla V.:

Chapter 24:

Mari anxiously admired Jase while he was in the pool as she reflected on their earlier interaction. Soon after recognizing that her brother won the 400 due to Jase’s loss of breath, which likely only Mari noticed, she opened up to Giselle about her flirtationship with Jase, leaving out the summer camp location details. Then, AWP won the relay. Mari questioned Jase about losing his breath and he shook it off, offering Mari a ride home to her house to enjoy some of Mari’s mom’s baklava. On the drive, Jase did all of the things to make Mari comfortable on the drive while Mari opened up about her upcoming prosthesis appointment.

Chapter 25:

Nick made it clear to Jase he was aware of the flirtationship and on the drive home Jase reflected on the hurt he had caused Mari. The next day at school, Mari brought Jase leftover baklava. Mari accidentally brought up camp casually, but the coast was clear…no one heard of their shared camp experience. While at the lockers, Jase noticed Mari’s calluses from using the crutches and they briefly discussed the prosthesis appointment, and Jase assured Mari that he was only a text away.

Chapter 26:

Mari missed chemistry class to be at the prosthesis consultation. Wren, the doctor’s assistant, asked all of the pertinent medical questions, and then requested to talk about Mari. Mari was confused as they had just talked about her, so she had thought. Wren then asked about Mari in regard to her life outside of the medical realm, including school, fun, and her significant other. Mari was surprised by this and now wondered if she felt the feeling of hope.

Chapter 27:

Jase couldn’t stop thinking about Mari during the chemistry lecture, so he texted her “you okay” with no response. Lucas discussed the gala with Jase and Lucas hinted at the fact that he knew Jase had been a cancer patient, and during the conversation, Jase went pale and Lucas insisted on help from the teacher, Mrs. Yother. Jase and Lucas walked to the nurse’s office together, despite Jase’s efforts to blow the symptoms off.

Chapter 28:

Mari was uncomfortable during the prosthesis appointment and decided she did not like this provider, particularly due to the verbiage he used. Sadly, Mari felt like a thing or experiment rather than a person during the appointment. She did however think of Jase during the appointment and finally text him back stating that she wasn’t sure why she was there.

Chapter 29:

It was determined that Jase had a panic attack, and he was sent home, although in the back of his mind Jase had wondered if this was the real diagnosis. Jase and his mother Olivia had a brief discussion about Jase’s cancer and Jase reiterated that he barely remembered it, but Jase found out that the school had known about his cancer all along. Olivia encouraged lab work and Jase adamantly denied and was able to talk his mother out of it, as if he was scared something would pop up as concerning in the lab work, and he wanted to avoid that altogether.

By Sarah L.:

Chapter 24
“I don’t mind you asking me questions, it’s the way you learn. It only bothers me when strangers demand to know something really intimate.”

In this chapter, Mari attends a swim meet that both Jason and her brother are competing in. We get a deeper insight into her feelings for Jason (frankly still somewhat amazing to me given how he has so far treated her, but perhaps reflects the long relationship they had built at camp that we haven’t really witnessed), and she and Jason continue to flirt. Mari invites Jason home to eat baklava and meets Jason’s mother who is organizing the gala and has asked Mari to be the speaker.

A couple of moments really resonated with me in this chapter, both exploring the ways in which other people often feel like they have a right to intimate medical information. Jason’s mother tried to hide her inquisitiveness behind planning for the gala, but Mari saw through this immediately and recognized it for what it was – a desire to dive more into her life. A little later, when Jason was driving her home, he asks a series of questions about her upcoming prosthetic fitting and expresses concern that he might be being too inquisitive. Mari’s response is that she doesn’t mind him asking questions because it’s how he learns, but that she is bothered when strangers want to know intimate things. Both of these are experiences that I’m sure are familiar to many of us in this book club, and they are something that I have really been grappling with lately. The kind of constant battle to balance what I want to share with what other people want (demand?) to know. Whether that is complete strangers commenting on the fact I walk with a cane (“you’re too young for that” and “what happened to you then?” being almost daily comments at this point), or friends and family feeling like they have a right to intimate medical information that I’m not yet ready to share or frankly don’t want to. It’s something I’m finding really tough to balance at the moment, so it was nice to see it come up and to be able to think more deeply about it in the context of this work.

Chapter 25

“He couldn’t imagine feeling like you owed some sort of explanation for your life to the whole world.”

This chapter acts as a sort of bridging chapter to the upcoming prosthetic fitting. Jason and Mari enjoy baklava at her house and continue to develop their relationship at school, with Jason asking Mari whether she likes him, and Mari admitting that she does. Again, for me, what really resonated here was this question of what you owe to other people when you are sick and/or disabled, and the tension between what they might want to know and what you want to share. One of the toughest transitions I found in terms of how I relate to the world was when I started to walk with a cane, and suddenly my cancer (which had until then been reasonably easy to hide in public) became more obvious. It made it harder for me to decide who I wanted to tell, when, and how much, and led to a lot of people feeling like they could ask really intrusive questions. Like I owed them something because my disability was now visible. It was a real shock in many ways because not that much had changed for me (it wasn’t a new diagnosis, I hadn’t suddenly gotten a lot sicker, I just needed to use a cane), but it massively changed how people saw and interacted with me.

Chapter 26

In this chapter, Mari goes for her prosthetic fitting, and experiences so much that felt really familiar. The experience of endlessly repeating your story. Your medical history. Of getting really good at summing it up nice and quickly, knowing exactly what they need to know. But also those moments of hope when a doctor or medical professional takes a moment to connect with you as more than just a diagnosis. As a person, with hopes and interests and dreams beyond whatever is written in your file. Someone living and wanting to live, a full life. It was one of several moments in the book where the authenticity of the author really shone through for me. Such a mundane thing in many ways (an interaction with a medical professional), but written in a way that really made me feel seen, and emphasized that the author is writing about something she knows intimately. Even if the story itself is fiction.

Chapter 27

In this chapter, we switch back to Jase and see him struggling again to manage the school and cancer parts of his life. First, as he and his friend Lucas discuss Mari and the gala and Jason continues to hide the reality of how he knows her and his relationship with Camp Chemo. And second, when Jason has something that looks like a panic attack, although given the pillows he needs to sleep on at night and his history of chemo is likely some sort of cardiac episode. This chapter really emphasizes the strain that hiding his past is placing on Jason. Not only is he damaging his relationship with Mari, he is lying to his closest friends, and the proximity of his conversation with Lucas to the cardiac episode suggests the situation is also placing great strain on his body.

Chapter 28

“This was….embarrassing wasn’t the right word, because it was completely professional, like any other medical procedure. Uncomfortable.”

In this chapter, we again switch back to Mari’s story, and the next stage of the prosthetic fitting, which begins with just one doctor examining her and ends with multiple people examining, touching, and talking about her as if she were just an interesting problem to be solved rather than a person. This was another chapter where I could really feel the experiences of the author ringing true on the page. The fascination that doctors have with complexity (the more complex my cancer became the more doctors seemed to be interested in me), and the ways in which you can often feel like little more than an interesting problem to be solved, rather than an actual person. One of the really odd things I have discovered as it’s become clear my cancer is not curable is that I have now gone the other way – I am no longer solvable, so I am no longer quite as interesting – and I am having to negotiate new relationships with certain members of my medical team as a result. I also totally recognized the experience of being touched in ways that would under any other circumstance be incredibly intimate, but in the medical context are done without so much as a second thought, and become so weirdly normal. It’s strange having your body touched, probed and moved by relative strangers, but something I think everyone with a serious illness becomes used to very quickly!

Chapter 29

This is a short chapter in which we see Jase recovering at home after his cardiac episode, and discovering that at least some people at school do know about his cancer (like the school nurse) and that his mother kept diaries about his cancer and treatment that he can read if he wants to. Although this was a short chapter, I feel like it did a really nice job of drawing out some of the complexities of Jason’s situation. The fact he has no real memories of being sick helps to make at least some sense of his decisions not to share that information with anyone. And it was interesting to see him start to process his past at least a little. The one thing I do wish though (in this chapter and the book as a whole) is that there was occasionally a little more nuance around the choice to reveal/not reveal parts of your life. I feel like much of the setup suggests that telling everyone and being open is good, while hiding it from people is bad, and I’m not sure the reality is quite so simple. Or at least, I’m not sure my experience has been quite so simple. I have never hidden my cancer, but that doesn’t mean everyone in my life knows about it (my university students for example do not). Nor do I think they need to. Even though the cane makes at least some aspects of my disability visible. And even within the people who do know there are different categories of knowledge. Some people know everything, others know some, and others know the broad strokes, but that’s it. For me, at this moment, that feels like the right approach, but it has changed over time and I suspect will change further as I get sicker. There are elements of this that are played within the book, and maybe it will be nuanced further as I read on, but at times so far I have found myself a little frustrated at the implied argument that Jase was somehow doing something wrong by not choosing to tell everyone everything.

By Xenia R.:

Chapter 24 –

This chapter focuses on the swim meet and Mari’s feelings for Jase. She also shares with Giselle their past history.

After the swim meet ends Mari spends some time talking to Jase and he then wants to drive her home and have some homemade baklava.

This jump in the storyline of Jase not wanting to have anything to do with Mari to then driving her home and hanging with her family seems so abrupt to me and really “Hallmark Channel” but homemade baklava does sound delicious.

Chapter 25 –

Mari’s home is filled with people and emotion and protective older brothers.

They are back in school and Mari brings Jase some more baklava because her mother does not feel that he had enough during the party. During their conversation he is rubbing her hand and notices her calluses, they discuss her upcoming appointment for her prosthesis. And he tells her he is just a message away.

Chapter 26 –

Mari and her mother are at the clinic to see what can be offered. Mari is nervous about the appointment and while waiting to be called starts thinking about chemistry notes. The assistant, Wren, calls them in and Mari notices that she has similar facial uniqueness to her and is able to relate to her. Wren asks the usual questions and Mari goes into automatic pilot answering them.

However, Mari is caught off guard when Wren asks her about herself, not diagnostic questions, about what makes Mari tick. What are the other components to Mari besides her lack of limb?

Those few sentences and that realness are sometimes what is lacking in the healthcare space but what is so necessary. The care team needs to know about the patient, not the diagnostic facts but what makes them them. Their likes, dislikes, hopes, and dreams. We are more than our diagnosis.

Chapter 27 –

Jase in chemistry class and is not feeling alright. He keeps on thinking about Mari at the clinic but internally something is off. His friend, Lucas, begins to ask him about Mari, their “relationship”, and then the conversation turns to the impending gala. Lucas shared how his mom returned home from the planning meeting threw out any cancer-causing foods or cleaning products. At this point Jase’s appearance really changes and the teacher advises him to go to the nurse and for Lucas to accompany him.

Have to love Lucas’ mom’s reaction – get rid of the sugar and the cleaning supplies. My mom wanted me to eat loads of broccoli during my treatment – no thank you.

Chapter 28 –

Back to the clinic and Mari is talking to Scott, the one in charge. She seems to be getting along with him, but his bedside manner is lacking and her patience is being tested.

She is extremely uncomfortable when he chooses to exam her residual limb but then directs questions to her mother.

The situation becomes even worse when Scott decides to perform a socket test and cast part of Mari’s residual limb. Scott and Carter, begin talking about Mari’s situation while casting her, thus treating her like a piece of meat and not a person. Wren tries to make a personal connection but her energy is overrun by the others and Mari feels completely lost and forgotten in this unique, uncomfortable situation.

While processing this chapter I am thinking of a teenage girl, whose body is changing, and has to adapt to all of these changes and societal pressures while medical professionals forget that you are a human not some accomplishment – it is so messed up.

Chapter 29 –

Jase left school early after having some Gatorade and snacks. His mom wonders if he should go have some blood work, but Jase doesn’t want to.

He finds out that the school nurse knows about his cancer history and was worried that his mother might be sharing his cancer story with random strangers. She reassured him that she does not and that the Child Life Specialist and hospital psychologist told them that it was his story to share not theirs.

Jase shares with his mother that he really doesn’t remember much of his treatment and his mom tells him that she has it all written down and even has his Beads of Courage.

I remember after my treatment and even now my mom has a tendency to tell random strangers about my cancer diagnosis and everything – it really upsets me but I could never figure out why until this moment. 100% honesty she was telling my story. Wow! Thanks, book club.

Join in next Monday for the comments and discussion on chapters 30-35!

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!

Drag Bingo Brunch Is Just Around The Corner

Lacuna Loft recently celebrated its 6 year anniversary as a nonprofit!  To celebrate, we’re hosting a Disney-themed, Drag Bingo Brunch featuring Miss Redd!  We’ve been hinting at a big reveal happening at the event, and here it is…we’re going to unveil our rebrand and new name at the event!  We’ve spent the last 9 months going through an exhaustive process and we are very excited about our new name and how it resonates with the work we do and the community we serve.  Want to be the first to know?  Grab your ticket today!

What do we mean by Drag Bingo Brunch?  A lovely drag queen, Miss Redd, will be hosting a bingo brunch with us!  We’ll have prizes, dance numbers, a costume contest, and attendees will be the very first to hear a HUGE announcement from us!

Is there a theme?  Yep!  Disney!

Do I need to dress in drag?  Nope!  Can you?  Sure!  We’ll have a costume contest though so dressing up according to our Disney theme is extremely encouraged. 😉

Who will be there?  Everyone!  Join with Lacuna Loft staff, board members, supporters, and community members!

How much does it cost?  This is a pay-as-you-can event!  While the suggested, minimum donation is $6 we totally understand that people have different financial capacities so you can join the drag bingo brunch, whether you pay $0, $6, or more!

Join us on Saturday, May 8th at 10 am PT / 12 pm CT / 1 pm ET for a 90-minute Drag Bingo Brunch.

Learn more and grab your tickets here!