Welcome to the comments and discussion of Chapter 5: Malignant and Indignant of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: Ramenonmics, Chapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, and Chapter 4: Human Spectacles.

Let’s get started!  Chapter 5!

Carly:

I really appreciate those who are open and honest about what cancer really looks like. With my experiences, it is rarely a thumbs up and smile for a photo. It’s raw, painful, terrible, hard, and expensive. I have to admit…while I’m involved in Relay for Life and work with the American Cancer Society, their images (usually with the word SURVIVOR in bold) are a pretty upbeat representation of a cancer patient. When I think of cancer, I think of images like these.

To be completely honest, this chapter was a difficult read for me. I found myself feeling angry with Geoff for his lack of care and respect for his own body when first diagnosed and through most of his first year.

“So what do I do now? I felt like I had post-traumatic stress disorder or something.”

I hear this a lot. I’ve even been told that post-cancer world is even more difficult than fighting it. Having a set schedule (chemo, tests, doctor, chemo, tests…) was comforting (in a weird way) because you knew what to expect, what’s next. A clean bill of health is everything you want and spend time fighting for. But as soon as you get it, you don’t just go back to “normal”. How could you? How do you adjust? This is a topic that we need more research on and we should talk about more openly. I believe that insurance should cover therapy during your fight and after your clean bill of health, if you are that lucky.

—

Thanks for joining us for our Chapter 5: Malignant and Indignant of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 6: Something in the Air.

If you’re just joining us, here are some logistics:

We will talk about a chapter each Monday until the book is done.  Then, 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 great “meet the author” post coming up!  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Welcome to the comments and discussion of Chapter 4: Human Spectacles of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: Ramenonmics, Chapter 2: When G-d Things Happen to Sick People, and Chapter 3: Single.

Let’s get started!  Chapter 4!

Carly:

Everyone typically has that one person (or more if they are lucky!) in his or her life that tells you straight. When you look like hell, need a reality check, or cut your bangs too short. I think (hope) I was that person for my aunt. When she was sick with C and preparing herself for and thinking through next steps, I was always open and honest with her. I feel like she appreciated that. I appreciated it. It allowed me to help her in ways that others couldn’t. It allowed us to have special moments together, moments I’ll forever cherish.

Amilca’s brother saved her life through a stem cell donation. My next thought: What’s it like to donate stem cells? The American Cancer Society has some good info.

“Facing death is the most painful thing I’ve had to go through, but it is the greatest gift I have ever been given.” – Amilca

No one enjoys the hell that is C. There’s nothing easy about it – for you or your caregivers. Even strangers have a hell of a time dealing with it. But do you learn a lot? You learn everything.

—

Thanks for joining us for our Chapter 4: Human Spectacles of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 5: Malignant and Indignant.

If you’re just joining us, here are some logistics:

We will talk about a chapter each Monday until the book is done.  Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Welcome to the comments and discussion of Chapter 2: When G-d Things Happen to Sick People of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: Ramenonmics!

Let’s get started!  Chapter 2!

Carly:

I thought this chapter really hit home the struggles of understanding what you want for yourself, what you expect of others, and thinking about your future. I can certainly relate to Sheila in her explanation of not knowing what she wants from people. You appreciate their support, but don’t want them to be sad around you or overbearing. You don’t want to hide what’s going on or people to think you want sympathy, but you feel awkward not saying anything at all. You want to not think about cancer 24/7, but it sometimes just consumes you.

I can also appreciate her not wanting to wear the Survivor shirt. I’ve also participated in various conferences and events where you’re treated like a rock star for having had cancer. And sure, the support is nice. For some, their history with cancer is painful and long, and they don’t want to wear a crown or ribbon.

I appreciated Sheila’s decision to stay where she was and not return to Boston. I can’t image it would be easy to take on C in a new place. Then again, maybe that’s just what she needed.

As for thinking about long-term goals, C changes everything. It certainly did for me. When I was younger and someone would ask where I saw myself in 5 years, I’d answer with something career-oriented. When people ask me now, I say, “Happy, healthy, alive, and around my friends and family.” And that’s the truth.

—

Thanks for joining us for our Chapter 2: When G-d Things Happen to Sick People  of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 3: Single.

If you’re just joining us, here are some logistics:

We will talk about a chapter each Monday until the book is done.  Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

The time has come!  Our second young adult cancer book club has begun of Everything Changes: The Insider’s Guide to Cancer in Your 20’s and 30’s by Kairol Rosenthal!  A huge shout out to Ms. Rosenthal for all of the help she provided with the purchase of these books as well as the special touch she added to each one!

A bit of logistics before we start:  If you are just getting on board, are interested in reading Everything Changes: The Insider’s Guide to Cancer in Your 20’s and 30’s along with us, and are also interested in having your thoughts and comments on each chapter published here on Lacuna Loft, email me at mallory@lacunaloft.org!  If you would like to read along with us, Lacuna Loft is offering a free book to 20 survivors or caregivers.  To get your free book (I have just a few left!), email info@lacunaloft.org with your name, mailing address, and a little bit about yourself.

Ok, the last of the logistics from me: we will talk about a chapter each Monday until the book is done.  Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

—

Let’s get started!  Chapter 1: Ramenomics!

Carly:

Intro – Only a few pages through the introduction, a few words really stick out – life sometimes sucks. And when the sucky parts of life include health issues, life really sucks.

I was one told, “If you have your health, you have everything.” That always stuck with me. Throughout the years, I’ve really fallen back on that conversation. Sure, a shitty co-worker, breakup, or dead car battery can suck. But those things don’t come close to any health-related issues you, your friends, or family may have. Ever.

Chapter 1- I can certainly relate with Nora when she describes the call to tell her mom as “probably the worst part of the entire cancer experience.” Even to this day, I don’t remember the details about the physical pain much. Sure, I had it. But it doesn’t stick out to me in my mind like when I had to call my parents (out of town with all my siblings for a sports tournament) and tell them the news. I remember the conversation like it was yesterday and it still makes me sick to my stomach.

My blood boils when reading about how Nora was treated by the state and her healthcare professionals – a common story I hear way too often: young, educated, hard-working adults essentially being punished because they get sick. It’s total bullshit. At a time when you are doing everything to survive, the “system” is working against you and making it harder to focus on what’s really important – surviving.

Mary:

This chapter focuses on health insurance and access to healthcare. Nora had great difficulty accessing health care in the US because her mother dropped Nora from her health insurance. With the implementation of ObamaCare (the Affordable Care Act) in the US, children are permitted to stay on their parent’s health insurance until their 26th birthday. I dreaded my 26th birthday. The possibility of losing my health insurance was the absolute worst birthday present ever. For the past ten years, my medical costs have exceeded one million dollars a year and insurance has paid for most of it. Luckily for me, my parent’s health insurance has a provision where children incapable of self-support may remain on their parent’s insurance until they either become self-supporting or die. My family knew I qualified for this provision and we started working on getting my exemption approved before my 24th birthday. Three months before my 26th birthday we were still waiting for the approval of my lifetime insurance extension. I did qualify for Medicaid, but like Nora, we knew Medicaid would not pay for almost all of the medications I take and only one of my physicians would accept it. I got the best birthday present any chronically ill young adult could ever want: lifetime health insurance. Getting that approval was better than getting a car or a house for my birthday because I knew without it, I would be homeless trying to pay for my medical bills.

—

Thanks for joining us for our Chapter 1: Ramenomics of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 2: When G-d Things Happen to Sick People.

If you’re just joining us, here are some logistics:

We will talk about a chapter each Monday until the book is done.  Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?