Finding Balance, Week 5: Chapters 24-29

Finding-Balance-wk-5

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!