Vote For The Young Adult Cancer Book Club Read!

young adult cancer book club

Wow!  I received so many great emails with suggestions on our next book club book!  Round 3 of the Young Adult Cancer Book Club will start later in August and for the next two weeks, until August 3, you can vote for which book we read!  So go ahead, VOTE to pick your favorite option for our next book club.  Based on your responses, we’ve narrowed down the next book club read to 8 options!  Check out more about each title below and then vote for the one you want to read next!

Links to find out more about each book:  You Are A Badass by Jen Sincero, I’m Just A Person by Tig Notaro, Daring Greatly or Rising Strong by Brené Brown, The Art of Asking by Amanda Palmer, This Should Not Be Happening by Anne Katz, Mom’s Marijuana by Dan Shapiro, A Funny Thing Happened On The Way To Chemo by Luke Ryan.

 

What Do You Want To Read Next?

young adult cancer book club

It is officially that time again….time to start talking about the next Lacuna Loft Young Adult Cancer Book Club book!  I have a few books in mind and I’m sure you do too.  We have already read through Planet Cancer and Everything Changes.  Last time we had a few books on the list that we very popular but didn’t quite make the cut.  One of them was Mom’s Marijuana:  Life, Love, and Beating the Odds.  Another one that we discussed was A Funny Thing Happened on the Way to Chemo…though I’m having trouble finding that one on Amazon now.  I’d like to also suggest that we could bring in not-so-cancer-specific but definitely applicable to a cancer survivor books such as, Daring Greatly or Rising Strong.

So, what are your next steps?  Email info@lacunaloft.org anytime in the next 2 weeks with suggestions for the next book club book choice.  I’ll compile the list and on July 20 the official voting poll will go out for you to make your selection!  You’ll have two weeks to vote and then we’ll choose the book for Lacuna Loft’s 3rd book club!

I get emails from time to time suggesting next book club choices.  I have very few “rules” about the book club, except that if the book is cancer related, it also be young adult cancer related.

So!  What do you want to read next?

P.S.  It’s my birthday!  🙂

Book Club: Planet Cancer, Meet The Authors!

planet cancer

Welcome to the comments and discussion of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying SaneChapter 6: People, and Chapter 7: What Now?!

Let’s get started!  Meet the Authors!

I recently had the pleasure to chat with the authors of the Planet Cancer book, Heidi Adams, CEO of Critical Mass, and Christopher Schultz, writer and founder of Start Here Development.  I hope you enjoy it!

Thanks for joining us for our first book club of Planet Cancer!  We had such a great time reading and discussing.  Are you interested in seeing another book club here on Lacuna Loft?  Have any books in mind?  Let us know!

Book Club: Planet Cancer, Chapter 7

Welcome to the comments and discussion of Chapter 7: What Now? of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying Sane, and Chapter 6: People!

Let’s get started!  Chapter 7!

Carly:

It’s such a common question in your C life. During the process & after – ok, that’s taken care of, now what’s the next step?

This chapter provided several great examples, all very different (which was good to read…there is no right answer for everyone). Your “new normal” is yours for the taking; it’s a blessing to have. Move mountains, travel, sit back and relax, find a new job, take up a new hobby, or all/none of the above.

Post C life is different. Things have changed. Your body is likely different (physically) & you probably think a little differently as well. As the book said, it’s important to take the time to figure out this new normal. All the answers might not come at once. You may feel differently about people, places, things, and causes. Embrace it.

I really appreciated the details on employment in this chapter. When wrapped up in the C world and focusing on being your own health advocate, it can be hard to juggle everything. And frankly, work can be the last thing on your mind. Know the laws. Know your rights. Know what can and cannot be asked of/from you. And if you have to explain an employment gap (ya know, because you were busy kicking C’s ass), be prepared for what to say.

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis, Chapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying Sane, and Chapter 6: People.  Join in on Monday, September 21st for a very special Meet the Author post with Heidi Adams and her brother, Christopher Schultz!

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 on Planet Cancer?  Any thoughts on what book we should try next?

Book Club: Planet Cancer, Chapter 6

Welcome to the comments and discussion of Chapter 6: People of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, and Chapter 5: Staying Sane!

Let’s get started!  Chapter 6!

Carly:

People. Of all the chapters thus far, this one was by far the most emotional for me (grab the tissues). It brought back so many memories, both good (remembering all your loved ones who helped you) & the bad (ya know, the person who tells you everything happens for a reason).

A comment that stuck out early to me in this chapter was from Haley, shown below.

I always knew I had good parents, but I learned that in fact I have great parents. For me, nothing was harder than to watch my parents. They had the cancer as much as I did and wished they could take my place.

This is SO TRUE. True for my parents and siblings. That was certainly one of the worst parts of the whole process – watching how scared or nervous they all were. It’s funny what you do and don’t remember. But that feeling — looking at their faces when were waiting on the hard answers – that stays with you.

I think this chapter is important because for some, the anxiety of people (what they’ll say, how they’ll act around you or behind your back, etc.) is just as stressful as the big parts of the C process. Because really, people play such a big role and knowing what to expect and how to handle difference situations is really helpful. Like when to tell people to leave you alone, stop looking at you with sad eyes, and say thank you.

My people? They are so loved & appreciated. In fact, I’m going to tell them all that now. I encourage you to do the same.

Cheryl:

“Be the arbiter of your own time and be unrelenting. People will understand. And if they don’t, hey, you’ve got cancer.”

This chapter covers all the people that make up your support system – from your inner circle to people you barely know. When you make your cancer diagnosis known, it can surprising to see how many people will offer their assistance, drop off meals, watch your kids, etc. I think you realize who your true friends (and family) are when you are dealing with cancer; they are the ones who step forward and really provide you with the support that you need. You might be surprised as to who is there for you and who decides to drop off of “Planet Cancer.” This chapter didn’t touch too much on the friends who distance themselves from you during cancer, but it’s something I’ve seen myself and heard from my “PWCs” (people with cancer). It also gives you permission to pull the “C” card if you need it; it’s okay to say no and it’s okay to take a break from family and friends if you need it!

The section on how to talk to your children about cancer really hit home with me. When I was diagnosed my children were ages 9, 5, 4, and 8 months. When we told them about my cancer diagnosis and upcoming surgery/treatment, we made sure to emphasize that it wasn’t anyone’s fault that I had cancer and that it was not contagious. Even after saying that I remember just a few weeks later driving in the car and my 5 year asking me out of the blue “Mommy…will I get cancer too?” My heart broke for her; my heart broke for all of my children and I felt so guilty for what I was putting them through…even though I certainly hadn’t made the decision to bring cancer into our lives, I still felt guilty.

This chapter also covers dating after a cancer diagnosis and how/when to let a prospective partner know about your health. There’s a section written by caregivers that will help the people who are helping you. It was interesting and heart-warming to read about cancer from a caregiver’s perspective. One quote that brought tears to my eyes was from a caregiver who was helping her sister with cancer – “I understood, just a little, what my place in this was. Or maybe I didn’t understand it so much as feel it somewhere that I knew counted….It seems that those who get cancer are the only ones who can handle it. They’re going through it, not you. You’re going through something different. You watch the great ones shine; you get to be near them. Like light exposed to a prism, you are transformed.”

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis, Chapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying Sane.  Join in on Tuesday, September 8th for Chapter 7: What Now?.

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?

Book Club: Planet Cancer, Chapter 5

young adult cancer book club

Welcome to the comments and discussion of Chapter 5: Staying Sane of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, and Chapter 4: Side Effects!

Let’s get started!  Chapter 5!

Carly:

An excerpt from the first page of this chapter: “We on the Planet firmly believe in acknowledging both the ups and downs – the fear and anger is just as much a part of this as the joy and laughter. It’s called the human experience.”

AMEN.

Staying sane (with or without cancer) can be a challenge. Work, friends, family, and general life stuff. Add cancer to the mix and things can get wacky. You. People around you. That’s why this chapter was so fun to read – some of the crazy things I did to stay sane (especially while waiting for test results) were also the ideas of others. Whew.

I’m glad a large part of the chapter talked about sex. I really expected this to be addressed in side effects, the previous chapter, but alas – here it is! Info and tips for males, females, couples, and singles – it’s there. K-Y and all.

Several stories in the religion section reminded me about the awkward things people said to me or things I have heard said to others. Yeah, I totally get it – it’s sometimes hard to find the words (I find myself struggling in various situations). If you need some help, try these cards made by Emily McDowell, a cancer survivor. She has some real gems.

The bottom line: do what you need to do to keep yourself together. Wear what you want (that’s practical for your treatment, of course), seek professional help if you feel the need, ask questions about sex and communicate your feelings to your partner, wear a wig, don’t wear a wig. Just do you.

Cheryl:

“Cancer touches you in every way: mental, physical, social, spiritual, environmental.”

This quote really resonated with me and this chapter is full of tips on how to cope with the changes that cancer brings to all facets of your life. We all know by now that exercise is good for us – and even though there are days when you feel like you can’t even get up off the couch (and that’s okay!), there will also be days when you do have the energy to move and even something as simple as going for a short walk can help you feel better. Same goes for nutrition – food is fuel and it’s important to eat healthy (of course there’s no reason to totally deprive yourself!).

There’s a lot of sex talk in this chapter; I’m pretty sure all ‘bases’ are covered! 😉 Other topics touched on are fashion/wigs, religion, and complementary/alternative medicine (I’m a big fan of both reiki and healing touch).

Last but certainly not least there is info about reaching out to mental health professionals – you should definitely consider adding a mental health specialist to your medical team. It’s hard to stay sane sometimes when dealing with the curve balls normal life throws your way – add cancer in and the equation will usually result in a mix of depression and anxiety. There’s no shame in seeking help. It’s important to take steps to help yourself feel better and learn coping strategies to help you as you deal with the added stress cancer brings to your life.

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis, Chapter 2: Getting Your C-Legs, Chapter 3: Treatment, and Chapter 4: Side Effects.  Join in us on Monday, August 24th for Chapter 6: 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.  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?

Book Club: Planet Cancer, Chapter 4

cancer side effects

Welcome to the comments and discussion of Chapter 4: Side Effects of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, and Chapter 3: Treatment!

Let’s get started!  Chapter 4!

Carly:

There are some parts of cancer that really suck. You can include side effects in that category. Honestly, once I read the titles of all the chapters, this was the one I was least looking forward to. Because really, who wants to remember the not-so-fun parts?

However, I was pleasantly surprised – this chapter was fantastic. Does it talk about all the gorey details? Yep. Puking, constipation, man boobs, chemo brain, and lots more. Does it offer outstanding advice and tips on how to manage your side effects? Yes! And then some.

As the chapter stated, there isn’t a cure-all for side effects that works for everyone. There are a hundred different things that you can try – some may work, some might not. But as the saying goes, you don’t know what you don’t know. So why not learn about as many ideas/tips as you can (especially the alternative terms for vomiting – fun!) and have them in your back pocket for when the time comes?

I should also note – this chapter is just as important for caregivers as it is for cancer patients. Knowing all the symptoms and side effects as a caregiver can greatly impact your care of the patient. I wish I had read this book when we were taking care of my aunt. It certainly would have made things easier to understand.

Cheryl:

Side effects – I really like how the book structured this chapter to include different tips and advice from those who have been there. Having never had to deal with chemo myself, I can’t comment on all of the side effects and various ways to deal with them, but I do have to say that it seems that this chapter includes a lot of little details to help those undergoing chemo.

I was a little disappointed to see that the chapter did focus mostly on the chemo side effects since in my case I had a different type of treatment (surgery and then radioactive iodine) that had it’s own variations of the side effects described. The description of cancer-related fatigue really hit home for me as did the the idea of “chemo brain” – though in my case I tell people I suffer from “radioactive brain!”

I really enjoyed the little story at the end about “cyberchondria” – I could totally related to that! Dr. Google and I have gone from BFFs to sworn enemies (and then back to BFFs) throughout my cancer journey. I know all too much how easy it is to take one little issue or thought and google it to hell before coming up with the worst possible diagnosis ever. Glad to hear I’m not alone in doing that!

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis, Chapter 2: Getting Your C-Legs, and Chapter 3: Treatment.  Join in two weeks on Monday, August 17th for Chapter 5: Staying Sane.

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!

Book Club: Planet Cancer, Chapter 3

planet cancer book

Welcome to the comments and discussion of Chapter 3: Treatment of the book, Planet Cancer!  Catch up on Chapter 1: Diagnosis and Chapter 2: Getting Your C-Legs!

Let’s get started!  Chapter 3!

Mallory:

This chapter serves as a great crash-course in cancer treatment.  It goes through different types of treatment possibilities and what it is like to be in a clinical trial, go through radioactive iodine treatment (and have glowing pee!), have a port implanted, have a colostomy, and more.  The real life stories really draw you in and offer an intimate look into a piece of the individual’s cancer journey.  One of the contributors, as explained in his bio, passed away before the publishing of the book and upon reading this, I found tears come to my eyes.  I felt as if I had lost a good, even if brief, new friend.  The Planet Cancer book lends itself, once again, as reference book as well as young adult peer support mechanism.

Chapter 3 of the Planet Cancer book also discusses an interesting piece to the young adult cancer puzzle that I had never considered before: your oncologist.  There is a brief, yet very intriguing personal account from an oncology physician meeting a young adult patient for the first time.  The thought process of the oncology doctor is empathetic, compassionate, and gives a great glimpse into the other side.

Carly:

The treatment chapter. I was looking forward to this chapter thinking that there would be some good stories and advice shared. I wasn’t disappointed – lots of great information.

I always find this part of having C to be where people are most curious. Yeah, they understand you have C, but they want to know exactly what’s going on. And frankly, it’s hard to explain if they aren’t seeing it first hand. Days are different. Heck, minutes to hours are different. Describing the process and your feelings can be difficult. Especially if those asking the questions haven’t experienced treatment themselves or been a caretaker – their questions are based on what they’ve heard from others, read online, seen on TV, or just have no clue about. But as the book stated, each person’s treatment plan is different. And that’s important to remember.

I appreciated this chapter (especially for people just trying to getting a better understanding of C) because it explains the many different types and processes of each treatment type – chemotherapy, radiation, surgery, and others. Chemo isn’t “just chemo”, it’s so many other things. Same for all the others. Different options, different combinations, different side effects, and different results.

Scars. I was a little disappointed to not see more about scars especially since a large chunk of this section was about how to cover them up. Perhaps that will come later in the book? Instead of worrying about your scar(s) and how to cover it/them up, I wish more would have been focused on accepting and embracing your scar(s). I refer to mine as Franken-scars.

Clinical trials. People read and see so many things on TV about clinical trials. There are a lot of misconceptions so it was good to see the chapter address some of the biggest myths (e.g. it is a myth that health insurance will not cover the costs of a clinical trial).

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis and Chapter 2: Getting Your C-Legs.  Since Chapter 3 was a bit longer (and Chapter 4 isn’t so shabby either), we’ll skip a week and rejoin the book club on Monday, August 3rd for Chapter 4: Side Effects.

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!

Book Club: Planet Cancer, Chapter 2

Planet Cancer

Welcome to the comments and discussion of Chapter 2: Getting Your C-Legs of the book, Planet Cancer!  To catch up on Chapter 1: Diagnosis, click here!

Let’s get started!  Chapter 2!

Mallory:

This chapter was extremely informative.  It gives detailed advice and tips on how to navigate so many pieces of the cancer diagnosis and treatment.  Being well informed about your options, bills, scans, treatments, medicines, and insurance is crucial to being able to advocate for yourself and your needs.  Physicians may sometimes not talk to one another fast enough between your appointments and having details about your new meds, notes about questions that arise, and knowing what decisions have been made thus far will help you to keep everyone on your Planet Cancer on the same page.  You are the one most motivated by your care and taking charge of the paper and confusion is important to your sanity, your piece of mind, and your health.

The initial round of tests involved in a diagnosis are typically the Complete Blood Count Test (CBC) and various types of body scans.  The CBC is explained, item by item and the different types of scans, from X-Rays to CT and PET scans, are differentiated to better illuminate the role they play in your diagnosis or while your progress with treatment is monitored.  Everything you’ve ever wanted to know about the different types of catheters are explained…both the internal and external variety.  Knowing what you have is a helpful tip when you’re dealing with a nurse who is new to you.

Chapter 2 of Planet Cancer also discusses the different people that you’ll interact with and exactly how you can call upon each of them to help you, from social workers to health insurance representatives.  Each of these people may not play an active role in your week-to-week as a cancer patient/survivor but knowing who you need to ask a specific question to may save you some time and stress in the long run.  The chapter also talks about how to keep track of all of the bills, questions, and notes that you’ll have from the hospitals and physicians.  Your radiologist may bill you separately from your oncologist and the bills may be taken care of by your insurance at different times.  Having an organizational strategy to deal with all of the paper you’ll have during cancer is crucial.  In addition to that are all of the medicines and treatments that you’ll need to stay on top of.  But what if you don’t have insurance?  Well, Chapter 2 of the Planet Cancer book talks about that too!

**It is important to note that some of the insurance specifics have changed since the publishing of this book.  Please see Triage Cancer’s website or the Health & Human Service’s website to get up to date information!

I had high expectations for this book but I’ve been super impressed.  The completeness with which the authors deal with cancer as a young adult has been astounding to me.  If you know nothing and read this book, you will leave armed and ready with the required information or at least the required know-how to get your questions answered!  Dealing with Planet Cancer as a young adult is stressful enough, now you are ready with the techniques and tips to manage your care!

Carly:

This chapter is SO IMPORTANT. It’s a good guide for the acronyms and C-talk you’ll hear.

All the conversations/words/tests/procedures can get confusing. Do you pick it up over time? Sure. But knowing things ahead of time can be so valuable. From blood cells to scans and catheters to ultrasounds, this chapter provides easy-to-understand descriptions and gives some good tips while taking these things on.

The chapter referenced this a few times but I feel as though I should repeat it – bring a notebook and pen to every appointment, test, and procedure (no, the notes app on your smartphone won’t cut it). Write down as much as you can. This will not only help you remember what was said, but it will help you formulate questions for a future appointment or if you need to call and ask/confirm anything.

A helpful tip: a C folder or binder. At my first appointment, I was given a folder that would eventually become my C bible – it went with me everywhere and it contained all my appointment/test/procedure summaries, insurance docs, and more. It helps to have everything in one place because you never know what you’ll need to refer back to or when (e.g. while on the phone with your insurance company sorting out payments).

A small, but important part of this chapter talks about living wills and the medial power of attorney – things everyone should at least consider and hopefully take action on.

Side note: you don’t have to have C to have a living will or medical power of attorney. Life throws curve balls all the time so it’s important to think about what you’d want and take action to make sure it’s implemented (as the chapter said, notes on the back of a Starbucks napkin won’t do).

I also really appreciated the thoroughness of the insurance world – an experience that can be both rewarding and challenging. The personal stories were fun to read and very relatable. Sometimes you gotta do what you gotta do (remember, you are fighting for your life).

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis.  Join in next Monday for Chapter 3: Treatment.

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!

Book Club: Planet Cancer, Chapter 1

Planet Cancer

The time has come!  Our first book club has begun of Planet Cancer!  I first proposed this back in March, and then firmly announced our start date in June.  Since then I’ve talked with a number of young adult survivors and caregivers about this book and about other possible titles for future book clubs.  I’m really excited about this project and about chatting together about young adult cancer and its complications.

If you are just getting on board, are interested in reading Planet Cancer 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.com!  I can send you an autographed copy of the book!  (first come, first serve)  If I’m out of autographed copies of the book, you can still join in and have your thoughts broadcast here.

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.  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!

Let’s get started!  Chapter 1!

Mallory:

This book seems awesome to me so far.  The first chapter, Diagnosis, talks about just that, everything having to do with your diagnosis.  From the moment that you’re told about your cancer, to the must do activity of getting a second opinion, to asking (and asking again if you need to) about fertility saving techniques before starting treatment, to the day you start researching your diagnosis (or decide not to), to having a potential misdiagnosis…this first chapter covers everything related to your initial diagnosis.

The personal stories were very relatable and the specific suggestions were spot on with things that I found helpful during my own diagnosis.  They go from topic to topic with ease, working in actionable items and tips, along with personal accounts from other young adult cancer survivors.  The fact is that glossing over asking about things like second opinions or fertility saving techniques may seem easier than doing the work and asking at the time of diagnosis…but you WILL want to get all of the information that you can as early as you can get it.  I actually didn’t want a second opinion (which the book emphasizes is VERY important) but scheduled one in the city where I grew up in order to appease my husband.  Sure enough, at that larger hospital there was a clinical trial that saved me from radiation treatments all together…(a great time for long term health, statistically).

(Another note and tip: when scheduling a second opinion, it is important to actually be referred (and use the phrase referral) when calling about the appointment.  Otherwise you won’t jump up to the top of their availability and might be looking at a chat with that second opinion physician months, instead of weeks, later).

One thing that was not mentioned, that horrible time between diagnosis and treatment, affectionately referred to as the Oh Shit Window (OSW).  Maybe this will be discussed later on?  I’m looking forward to the next chapter.  This would have been a great resource to have had during my diagnosis and initiation into Young Adult Cancerhood.

Carly:

The first thing I read in Chapter 1? Remember this: It’s completely understandable if your wits go AWOL upon hearing the C-word.

What a good reminder. Because at the very second you hear the C-word, you P-A-N-I-C. And then you go into shock. And then you say to yourself, “oh, shit.”

The chapter gives good advice and steps for what to do after you hear the C-word: be active and ask questions, get a second opinion, get organized, and rally the troops. Thinking back to my experience, I now realize how important being active and asking questions was. I asked lots (in addition to the hundreds my parents had).

I consider myself lucky. I appreciate people who are straight and to-the-point. My surgeon was just that. He didn’t fluff things and he certainly didn’t give me false hope. He sat there and answered every question (even if one was asked multiple times) and that’s exactly what I (and my parents) needed. We needed to know what the plan was, what the options and risks were, and what to expect (even if it gave us lumps in our throats). Knowing all the information gave me a sense of control.

The book is right – most people are scared to ask for a second opinion and I totally get it. You are so consumed with getting the C-word out of you as quickly as possible that it may seem stupid to get a second opinion (because time is of the essence). Or you might be scared of what you will hear. Or perhaps you don’t want to know how much it’s going to cost. None of those things are stupid. It’s your life and you must be in control. Being 100% comfortable with the plan of attack and trusting your team of health professionals is essential to all steps in the process. It makes all the difference in the world.

Fertility. I’m glad the book talks about this. When diagnosed at 21, it was the last thing on my mind as I’m sure it is for many young adults. When you are ready to dive in to whatever treatment you need, it’s probably something that’s easy to forget about. And when you’re young, you don’t know what the future holds and what you’ll want down the road. Knowing your options is essential and the book provides a great resource, Fertile Hope.

Side note: I love the honest stories in the book. The fertility section has some good ones.

Research. We’ve all read WebMD a time or two and freaked ourselves out. I certainly did – it’s hard not to. Even after I was given the clear, I still researched a lot. I do to this day. But as the author notes, “think about it and don’t forget it. You are a statistic of exactly one.”

There are certainly pros and cons to research. My favorite pro mentioned: As a patient, you only have to research one kind of cancer and one situation: yours. I agree. Be your own advocate. Do your own research. The book gives some sound tips on how to start, where to look (and not look!), and when to stop (because really, there will be times when you need to peel yourself away from the computer). It’s totally normal.

Thanks for joining us for our first book club post, Chapter 1: Diagnosis of Planet Cancer!  Join in next Monday for Chapter 2: Getting Your C-Legs.