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!

Finding Balance, Week 4: Chapters 18-23

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, and Week 3.

By Leslie P.:

These chapters cover a variety of difficult situations. The author has created such real characters and vividly paints a picture of what it is like to first, be a teenager; second, be a teenager with a visible disability, and third, the turmoil of being a childhood cancer survivor who keeps his cancer story private.

Chapter 18

Jase is out to dinner with his parents when his Mom starts talking about how wonderful it is that Mari transferred to AWP and how cool it is that he can keep up with his Camp Chemo friends during the school year. Jase has very mixed feelings. Mari being at his school has invaded the “cancer-free” bubble he surrounded himself with. He is more worried about people at school finding out he is a cancer survivor, that he avoids Mari and acts like an ass. Jase is feeling very exposed, and uncomfortable and is in no mood to have conversations about his future swimming, college, law school career that his father expects him to blindly follow. He tries to avoid making any promises without telling his parents that he wants nothing to do with the legacy they want for him. His Mom starts talking about her Annual NYE Gala fundraiser and wants Mari to speak at it since the benefactor this year will be Camp Chemo. Jase is faced with his two worlds colliding. He has flashbacks to middle school where he was tormented by bullies, and he has not told anyone at AWP about his cancer for that specific reason. Kids can be jerks.

Chapter 19

Mari is at home playing a friendly game of Phase 10 (reminds me of the nights my family played for hours) with her siblings and talking to her brother about a party that she doesn’t really want to go to. She decided to join her brother, Leo, in hopes that she will see some of her friends from her old school that she hasn’t seen since transferring to AWP. Mari encourages her friend Ellie to go after her brother Leo, who Ellie has a huge crush on. Then she runs into Lucas from AWP, and he asks her out! She is shocked since she has never been asked out, but she turns him down. Then the awful Lindsay and Madalyn show up, surprised that Mari even came to the party, and with her brother. Lindsay is a snob per usual making snide comments about the kids from South not being cool enough to be at this party. Naive Madalyn is confused and dumbly asks Mari if she can drive with one leg. Mari gets the hell away from these girls as fast as possible in search of her friends from South.

Chapter 20

Jase arrives at the party. Lindsay rushes to his side with Madalyn right behind her. Madalyn points out to Jase that Mari is with Lucas who asked her out obviously out of pity. Blah. Madalyn is in her own little special world. She tells Jase that Mari’s brother is at the party also. Jase asks if she knows Leo, and her response is the worst! “No, but a figured I would recognize him.” Confused, Lindsay wonders how Madalyn will possibly recognize Leo. Poor, poor Madalyn says, “I mean, he’ll have one leg.” OMG! After shocked silence, Jase asks Madalyn why she would make that assumption. She stands firm in her assumption that cancer is genetic, so it seemed obvious to her. Right then Leo comes walking in on his two legs and greets Jase, who he knows from swim competitions. Leo introduces Ellie to everyone, and Ellie mentions to Jase that Mari talks about him. Lindsay gets jealous, and Jase feels like his world is shrinking quickly. Lindsay is upset and concerned when Jase tries to go outside and will not dance with her. He is so frustrated by her clinginess, jealousy and ends up breaking up with her in front of the whole party. Lindsay is furious! Jase escapes outside, where of course he sees Mari. By now Jase knows he has been a total jerk to Mari since she started at AWP and wants to be better so he starts up a conversation with her. Mari is confused by the two different Jases she has experienced lately. Jerky Jase, and fun camp chemo friend, crush Jase. Mari doesn’t sugarcoat things when she tells Jase how frustrated she is with him. I love her honesty! Mari wishes she could hide her cancer story from everyone like he can, but has no idea what that would even feel like. Mari explains to Jase that most of the time it is just easier to tell total strangers right away and get it over with. Jase offers to meet up with Mari and help her with her chemistry homework. The nicest gesture he has shown towards her lately.

Chapter 21

Mari is at work when Jase’s mother calls to asks Mari to speak at the NYE Gala. Mari is thrilled to offer any support she can for Camp Chemo and gladly accepts. Mari has some reservations about speaking only because she is trying to respect Jase’s wish about keeping his cancer story private. Jase stops by the bookstore to see Mari and is very flirtatious. Mari is cautious around Jase, she doesn’t want to be hurt by him. Mari doesn’t let his bad behavior off lightly, but she is warming up to him again. After work, they go to the cafe where their friend Davis works to study chemistry. Davis is also a cancer survivor and a recovering addict. Mari shares with Jase her guilt about speaking out to Davis’ parents about addiction and how she wishes she would have spoken up sooner. Jase ends up apologizing to Mari for being such a jerk lately, finally! Mari remains cautious.

Chapter 22

The debate class. Mari bravely shares her cancer story and the financial impact her treatments caused for her two working, health-insured parents. Lindsay, of course, is cruel with side comments and is asked to stay after class after the teacher warned her that her comments were out of line. These issues about the US health system were eloquently introduced by the author with the classroom debate. Mari holds it together until the end of class. She is tired of how the world treats her as a disabled person. She is tired of defending herself, she is exhausted by never being able to forget that she lost her leg.

Chapter 23

Jase finds Mari crying after class and comforts her the best he can. He is angry that Lindsay’s cruelty has upset Mari. Mari just wishes she could be like Jase and not have to tell her life story to everyone she meets. She asks Jase what he will do when everyone at school eventually finds out his cancer story. Jase continues to believe he can keep cancer private.

By Michelle M.:

Ch. 18

Jase and his family have dinner at the country club. His mother also brings up seeing Mari at AWP and how nice it must be. His mother also mentions having Mari be a speaker for the gala honoring Camp Chemo. You can feel how uncomfortable this all makes Jase. Then, his father arrives. His father asks how school is, is Jase ready for a swim invitational, swimming for UGA in the fall. His father wants Jase to follow in his footsteps. Go to UGA, become a lawyer. Jase’s mother saves him from this conversation by talking with his father about Mari being a speaker at the gala, how they should have Mari come to the club for dinner. You can see his father is capable of empathy when he asked which one Mari was. Jase explains she was the amputee and his father “softened”. Then there is talk of Jase being a speaker and how “inspirational” he was when he spoke in middle school. However, Jase remembers being taunted by others in middle school as “diseased” etc., how teachers would treat him differently after. I could feel how uncomfortable Jase was in this entire chapter. I think the reader begins to see why Jase has no desire for others to know what he went through. He is under a lot of pressure and stress.

Ch. 19

Starts with a family game night at Mari’s house. Mari’s brother Leo starts a discussion about a party. Giselle, tells Mari she should go. Mari wants to stay home and finish a book she is reading. She is convinced to go to the party. She is hoping some of her old South Side friends will be there. She also sees Lucas, who kind of asks her out, Mari tells him she is still new and trying to figure everything out. Lucas seems ok with her response. Then enters, Lindsay and Madalyn. Obviously, Mari doesn’t want to be around them. Mari mentions to them she has some friends from South there. Lindsay mentions how she doesn’t know how they even got there. Mari replies with they drove. The chapter ends with Mari sarcastically stating how it was nice to see them but she is going to go find her friends. I feel this chapter is really just setting up for the next chapter.

Ch. 20

Jase enters the party now. He makes his way to the basement and runs into Lindsay and Madalyn. Jase asks who all is around. Madalyn tells him some kids from South Side, she also mentions that Mari is there with Lucas. Lindsay takes this time to tell him how Lucas asked Mari out. Lindsay doesn’t mention how Mari basically told Lucas no. Madalyn mentions how Mari said her brother was there but she hadn’t seen him yet. Lucas asks her if she knows Leo, Madalyn replies no, but she would recognize him if she saw him. When others ask her how would she recognize him she says because he would have one leg. The people around her are silent and stunned that she would actually believe that. In comes Leo with Ellie. Leo introduces Ellie to Jase. Ellie mentions how Mari has talked about him. Jase doesn’t like how she looks at him as if she knows everything about him. Jase and Leo start talking about an upcoming swim meet. Jase unintentionally finds Mari as he is scanning the room. He suddenly doesn’t feel right and says he will be back. Lindsay follows him asking if he is alright. He says he is fine. Lindsay then asks if he wants to dance with her. He responds no he doesn’t and their “thing” is done. Lindsay is upset and asks if he is breaking up with her in front of everyone. Jase responds that they were not exclusive, and he can’t break up with her when they were not together to begin with. Jase doesn’t know that Mari was also outside and overheard the entire thing. Lindsay leaves; Jase and Mari begin to talk and she mentions she has to go now because she has to work the next day. Mari calls him Jase, but corrects herself and calls him Jason. (Mari only calls him Jase when she feels close to him). Jase breaks the ice by commenting how Madalyn thought Leo would also have only one leg. It seems to work and they laugh over this. Mari takes this time to let Jase know what a jerk he has been to her. He says he knows and he just doesn’t want anyone finding out that he had cancer before, he couldn’t handle it. Mari replies that she gets it. Leo flashes the car lights to let Mari know he is leaving. Mari says see ya, Jase asks if he can see her tomorrow after work, he can help her with chemistry, he saw her confused in class. Mari asks if he is watching her, he says always. I think this chapter makes it clear that Jase does have feelings for Mari and does know that he has been an ass to her. Their flirtatious conversation at the end makes it feel like they will get back together soon.

Ch. 21

Mari is at work and receives a phone call from Olivia, Jase’s mother, and she is asking Mari if she would be a speaker at the gala honoring camp chemo. Mari has a customer so she has to go. The customer turns out to be Jase. Mari tells him about the call. He seems a little bothered but tells Mari he needs a book on how to get a girl’s attention. Mari tells him in the self-help section. Jase asks if she would think less of him if he doesn’t like reading. She tells him she has judged him for more lately. He agrees and says how he is surprised she is even speaking to him. Mari says how she probably shouldn’t be because he will just hurt her again. He doesn’t seem to acknowledge this comment and instead tells Mari he does intend to help her with chemistry and when is she off work. Mari says in an hour and he waits for her to finish work. They leave the bookstore and Jase drives Mari to the Daily Grind where Davis works. Davis is leaving to go to a meeting. Jase says how he felt guilty when he found out Davis was in rehab. Mari replies that she is the one that told his parents and she has felt guilty about Davis now having a record. Jase asks why Mari didn’t tell him about this at camp. Mari then pulls away from Jase again, asking why he came to her store. Jase tells her because he needed to see her because of what a tool he has been. She asks why his friends care about her so much. Jase tells her because they are just stupid, and to not let them get to her. Mari tells him she doesn’t let them get to her it is when he does it to her. She then goes to leave and loses her balance. Jase asks her to stop for a minute. Mari says stop catching me, just to drop me later. I think it is clear to see that Mari isn’t ready to fully trust Jase again, which is completely understandable.

Ch. 22

Mari is in debate class. She is giving her speech on her story and how medical insurance, billing has caused issues for not just her, but other families with children facing a cancer diagnosis. Mari explains how some families even end up filing for bankruptcy. This is the 1st out of line comment Lyndsay gives saying how that families filing for bankruptcy isn’t bad for her because her dad is a bankruptcy lawyer and it keeps her in Prada shoes. The debate continues. Mari is rebutting about research dollars not going towards childhood cancers. Lindsay again interrupts to say how kids don’t actually get cancer, it only happens in movies and is super rare in real life. Mari continues the debate until time is called. It is now time for questions for the debaters. Lindsay then brings up a documentary about the sugar/cancer story and how this woman was completely cured etc., that if chemo is so expensive why not just cut out sugar. Mari explains how she has heard this story before and it is also the equivalent of victim shaming. Lindsay then responds with “oh did I hit a nerve”, and how Mari’s parents should have planned better to be able to afford a child having cancer. Mari needs to get away from Lindsay and everyone else who has never been in her shoes and doesn’t understand. She runs out of the classroom as soon as the bell rang. I have felt the same way before in certain situations, hearing the sugar/cancer connection story or other “cures” that people know about.

Ch 23

Jase sees Mari sitting on a bench in the hallway crying. Jase tries to comfort Mari she always seems so strong that words can not hurt her. Mari cries to him saying how she wishes she could be like him with no one having to know about his cancer. Mari then tells him about her appointment with a new prosthetics company. Mari then asks Jase what he will do when people find out about his story, because they will eventually find out. They then talk about being in charge of their own story. Jase then tells her how he isn’t even sure his leukemia is part of his story. The chapter ends with Mari saying how she has no idea what that is like, but she bets it is nice. I can see how Mari thinks it must be nice for Jase to not “have to” feel like explaining his situation to everyone.

By Shamika H.:

I loved reading the book Finding Balance. Chapters 18-23 was the best part of the book. I learned a lot about the characters. It was an amazing book and I would love to read another book by this author. This book helped me find balance in my own life while dealing with cancer.

Join in next Monday for the comments and discussion on chapters 24-29!

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 With Miss Redd

miss redd drag queen

Today, Lacuna Loft turns 6 years old as a nonprofit!!!  To celebrate, we’re hosting a Disney-themed, Drag Bingo Brunch featuring Miss Redd!

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!

Join A Butterfly Wreath Creative Art Workshop

butterflies on pink wall

Do you like to make art or craft?  Are you a young adult cancer survivor or caregiver?  Join Lacuna Loft while we make a one-of-a-kind butterfly wreath with paper in this online creative art workshop for young adults facing cancer!  This soothing and repetitive activity will be fun to make along with others in the Lacuna Loft community!

Who: 20 young adult cancer patients, survivors, and caregivers.

When: Wednesday, April 28th @ 4:30-6:30 pm PT / 6:30-8:30 pm CT / 7:30-9:30 pm ET via video chat.* (*US time zones…please confirm what time this means for where you live).

How does it work? We’ll send you all of the materials you need to participate! Lacuna Loft will send you an email about a week before the workshop with information on how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.***

Please note: Due to the global pandemic and ever-increasing customs and delivery times, we have stopped shipping outside of the United States. If you are interested in joining, please fill out the form and we will send you a list of supplies needed to participate, so you can still join us! Thank you for your understanding! If you have any questions, you can contact aerial@lacunaloft.org.

Finding Balance Week 3: Chapters 12-17

woman laying on bed while covering her face

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 and Week 2.

By Kat H.:

In Chapters 12 – 17, Mari is torn, constantly wrestling with the disconnect between Camp Jase and School Jase. Mari is already frustrated with the fact that she does not have the option to appear “normal,” but then to have one of her best camp friends and positive aspects of camp treat her so coldly and negatively when at school, is confusing and disconcerting for her. In these chapters, she flips through emotions nearly constantly: sadness, anger, indifference, and then the cycle repeats. I feel very fortunate that in my own cancer experience, my friends and family were amazing. I was very communicative about what I wanted and needed from my circles, those close to me and farther out. But I think what I relate most to in these chapters is the internal cycles and frustrations that Mari has. I had many full-blown conversations in my head about why did this happen (physically), why did this have to happen (emotionally), how had I never even heard of tongue cancer, being terrified of all of the treatment options, etc. I had never even had an IV before my diagnosis! So I appreciate the internal challenges that are so prevalent with Mari in these chapters and definitely see that cycle within my own story.

By Jeannette S.:

First, this is a super compelling story of what I am interpreting ups and downs of the cancer diagnosis. Even though I was not diagnosed at a very young age, there is much that I can relate to.

In my interpretation of Jase in these few chapters, he is much very much wanting to be a “normal” kid and has been because his secret of his cancer diagnosis has been kept. Zeke knows that he has been to camp, however, has been generous to keep his confidentiality. Zeke appears to be super mature and most students might do the lesser. To me, the Jase character has been much of my family reactions…wanting to keep everything back to “normal” and not wanting to admit to the cancer diagnosis. The support has been lacking at times, much like Jase in his school life.

Mari has been a super strong character, although we see her express her frustration and sadness at the lack of support from those on the outside of her family group. She appears to always be able to come home to family and express her “secrets”/ school issues with Jase, especially to her brother. Mari, like many of us, has been “forced” (not sure if this is the right word) to grow up or become more mature looking at money problems and problems with the overall society and looking at illness/disease — being it cancer or mental illness, etc… Watching Mari going through her many ebbs and flows reminds me of what I have gone through with survivorship. One of my favorite parts was when she was visiting Davis in the cafe and comparing a cancer diagnosis with alcoholism because you never know when it will come back. For me, it is so true. Having been diagnosed with ovarian cancer, it can be very likely for its return. However, the trust in the doctors, just like the trust Mari has with Davis to maintain his sobriety, seems to be my connection.

We are beginning to see the two different worlds/lives Mari and Jase are from. Jase also keeps waking up at night having difficulty breathing and cannot seem to get back to his rhythm of swimming. Some of this may be because of his choice in relationship discord with Mari or could it be his cancer coming back? Since I have not read further, I would think it be quite ironic if his cancer recurs again since he has been treating Mari so poorly. In many ways, Jase does not know how to deal with someone so openly dealing with their survivorship. This represents many of those around me who do not like to talk about it or those just wanting me to be “ok.” Much like Mari, I am open to questions and the education of others. In my mind, if I can help someone to catch ovarian cancer early, I know that provides them with life for a little longer.

By Rachel M.:

Chapters 12-17

I can relate to Jase. As annoying as he’s getting and how terrible he’s being to Mari, I can see some of myself in him. His need to hide his diagnosis because he’s afraid of what people will say hits close to home for me.

I was diagnosed at the end of my freshman year of college and am currently in complete remission and in my senior year. When I was done with treatment and ready to return to school, I had no clue how to go back and live like a college student anymore; I felt like all people would see in me was my past of cancer. I was afraid that would become my identity. My hair was just starting to grow back when I returned to campus in the spring of my sophomore year, and the hair I had just after treatment was thin and slow-growing. I felt that just by looking at me, people could tell that I had cancer.

To me it was obvious. I had spent months getting chemo and radiation; that had been my reality for half of a year. After experiencing that season of my hair coming back in, I can relate to Mari in a small way from a short season of my life to how she feels: wishing she could keep her past diagnosis a secret like Jase can.

Just as Jase asked Mari to pretend not to know him, I was afraid that friends of mine would ask me to pretend the same because they didn’t want to deal with the heaviness of a friend with a cancer diagnosis. And for some, that heaviness was too much, and our friendships dissipated.

I can’t imagine being in Mari’s shoes, though. To have a cancer friend, who understands the crap I’ve been through, just decide to cut ties to try to be “normal” would break me. I wouldn’t accept help in chemistry from that person either.

Being cut off by a friend who knows the hardest, most painful parts of my past who suddenly decides they don’t want to be my friend or acknowledge our shared pain would leave me spinning. It would make me want to put cancer behind me too and completely forget about it.

Unfortunately, it’s not that easy. At least for me.

Like Mari, I still feel like I owe my story to people sometimes. Just like Mari says, “I hate that people feel like they deserve to know.”

However, my diagnosis has formed such a big part of who I have become, that sometimes I’m the one who thinks people deserve to know, not the other way around.

When I got back to school after treatment, I didn’t stop to consider whether I actually wanted to share my story. I just felt like I owed it to people. I believed that word of my cancer would get around anyway, so I might as well start sharing, whether I was comfortable with it or not.

I would explain my medical history to people, and a wave of anxiety would hit. That should’ve been a sure sign that I was not ready to share.

Everyone shares at their own pace, and as I continue reading, I hope Jase learns to share his story again and can put his fear of others’ responses behind him.

Join in next Monday for the comments and discussion on chapters 18-23!

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!