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!

Diamond By Number Art Workshop

Join us for June’s Art Workshop: Diamond by Number! Create a piece of art made of rhinestones, through a meditative and repetitious process. Brandie will answer all your questions while guiding you through this 12 x 16 masterpiece of cacti. We’ll send you everything you need! It’s all happening on June 14th at 4:30pm PT / 6:30pm CT / 7:30 pm ET for two hours. We have supplies for 20 young adult patients, survivors, and caregivers.

**Please note, it’s unlikely we’ll get to finish this in the two-hour block of time. You are welcome to continue working on the craft on your own or by joining the next Young Adult Cancer Hangout (UnFinished Objects Edition) on June 21st at 4:30 pm PT / 6:30 pm CT / 7:30 pm ET. If you sign up for the Art Workshop, attendance is still required for the entirety of the workshop on June 14th. Feel free to email Aerial@lacunaloft.org with questions.

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

When: Monday, June 14th @ 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 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!

Meet Mary Clare, Our Featured Community Member!

mary clare

Meet Mary Clare Bietila.

My name: Mary Clare Bietila

Home​: Chicago, IL

Horoscope: Sagittarius

Favorite book: Birds of America by Lorrie Moore, Such a Fun Age by Kiley Reid, Americanah by Chimamanda Ngozi Adichie, Exit West by Mohsin Hamid

Hero: Amy Sherman-Palladino

Superpower: Parallel parking

Hardest challenge​: Living with unpredictable and neverending chronic illness

Guilty pleasure: Phone puzzle games

Favorite Lacuna Loft Program: Learning to bullet journal! Unspoken Ink writing workshops and any workshop I get to lead!

Proudest moment: Finding the courage to work on my marriage after cancer and parenthood.

The best piece of advice I’ve received: Anxiety is a liar.

How I stay mentally healthy: Any and all things that make me snort with laughter. My daughter, Twila, and my husband, David bring a healthy dose of silly.

Personal Mantra: Love is letting go of fear … There is no muse.

My favorite part of being part of Lacuna Loft: Finding a caring community that gets it.

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!!

Write Now With Jean Rowe: Roots

Lacuna Loft is proud to present our newest blog initiative: Write Now with Jean Rowe! Each month, come on over to Young Adult Voices and read everything LCSW Jean Rowe has to say! Love what you’re reading? Check out the many programs Jean is facilitating (including 30 Minute Tune-UpLost and FoundLacuna Loft’s Weekly Journal Prompt, and It’s a Wonderful Life to name a few) and sign up to join one today!

April 22nd is Earth Day, and what a glorious time of year to invite ourselves to get reacquainted, reconnected with our roots. This could mean – what is the story of your family? Have you ever charted a genogram (for fun, not school)? This could be a time to pull out colored pencils and highlighters and have some fun. You could make the genogram topic-specific like how many people in your family learned to sew or plant roses or grow tomatoes. You could interview an aunt or uncle about their lives, things you may not already know about them. It could be seeing if Ancestry is something you would like to explore. It could be reading your parents’ letters – something I did a couple of summers ago. They were from the 1950s through the 1970s and brought nostalgia and tugs on my heartstrings.

It could be literally connecting with the earth. Bring the outdoors inside with a pretty potted something where you can see and enjoy it. New to digging in the dirt? Don’t be afraid to engage a master gardener at a place like Ace Hardware to ask questions and get some guidance. Don’t forget about your local library and checking out books on how to grow, what to grow, and knowing your zone (important!). It could be hugging a tree. Don’t laugh! It might actually feel good. It could be going for a walk in a neighborhood where much is in bloom and beautiful to behold.

So. Loving the earth helps love yourself.

To recap:

A genogram of your own making
Interviewing a family member
Family Ancestry
Learning to garden whether it be flowers or vegetables or both
Hugging trees
Walking in the woods
Walking in neighborhoods which you bring you joy

And

How about a bird feeder?
Planting flowers that attract bees and butterflies?
Breathing deeply in your own front yard?

Possibilities abound.

 

Whatever you decide, try it and then write about it. How’d it go? How did it feel? What did you learn? What is next?

Let me know how it goes. I’d love to hear from you!

Away, away from men and towns,
To the wild wood and the downs,
To the silent wilderness,
Where the soul need not repress its music.
Percy Bysshe Shelley

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!