Confessions Of A Cancer Patient

survivor guilt

I’m awake, for maybe the fifth or sixth time tonight. Like other nights, it’s a cold sweat that wakes me. I rise up and stare sleepily at the light that shines through my blinds. My body aches, there is no comfortable position to sleep in. I rise slowly so I don’t wake him, and I hear a soft snore that tells me he’s deep in a dream. The weight of my own body almost feels like too much and balance takes real effort. It’s a long walk to our restroom only about 6 feet away. I dampen a cloth and moisten my face and my chest. Sore still both from accessing the port and a deeper pain that I can’t shake.

I haven’t slept a full night in I don’t know how long. In the mirror, I see the reflection of a woman I still don’t recognize. Short fuzzy hair, darkened nails and a round face, moon face they call it; they, the others, like me. I don’t like this woman. I feel a pit in my stomach, a feeling that’s familiar. A cross between angry and sad, my eyes water. It’s time to make my way back.

The more I sleep, the less I have to think. As I lay back down, I hope the next interval comes further out. Maybe I’ll sleep until I have to get up with the kids, but it’s unlikely. I stare up at the ceiling wishing I could cry. I know if I allow myself to start, it could be hard to stop.

The silence is deafening, I lay waiting and the hours pass.

This happens almost nightly, sleep escapes me and I just lay here. I watch him sleep and sometimes catch a giggle. I stare and watch his face as it changes from serious, to a smile and then fades away as quickly as it came. I lay there and wonder what he dreams of so vividly, and I hope it’s of our son (or daughter) in heaven. My heart aches more now, so I imagine something different. A dream where he is a popular Star Wars character, now I giggle.

To be honest, it could be much worse. I’m already expecting good news from a future scan. In fact, yesterday might have been my last chemotherapy session. I feel a sense of deep guilt at that realization, so many fight for so long and here I am, possibly done. I don’t know if I’m ready for what’s next, this “New Normal” the cancer community talks about. What I do know, is it’s in Gods hands now. So, I leave it up to him.

Book Club: Everything Changes, Recap

everything changes the insiders guide to cancer in your 20s and 30s book club

Wow!  This was a fabulous book to read!  The book was so easy to connect with…numerous great stories and perspectives from young adult cancer survivors were shared throughout the book and Kairol Rosenthal was always able to connect someone else’s cancer specifics to the greater, overall young adult cancer truths.  She talked about sex, anxiety, fear, love, dating, and so much more, always interspersing helpful tips, advice, and resources along the way.  I cannot over-recommend this book.  If you haven’t already, read it!

Did you enjoy this book club?  What were your favorite chapters?

P.S.  If you missed any of our chapter updates, you can find them all here.

Book Club: Everything Changes, Chapter 13

young adult cancer book club

Welcome to the comments and discussion of Chapter 13: Fluke of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, Chapter 6: Something in the Air, Chapter 7: Mortality Bites, Chapter 8: The Myth of Eternal Optimism, Chapter 9: It Girl, Chapter 10: The Fix, Chapter 11: Off the Map, and Chapter 12: Naked in the Streets.

Let’s get started!  Chapter 13!

Mallory:

This chapter held so many pieces of someone else’s story that I connected with whole-heartedly.

“When I talk about my cancer, I don’t say this is what I went through.  I saw this is what we went through.”

“I am now horribly afraid that everyone I love is going to die…Why?  I don’t know, just because cancer fucked my brain up.  It just messed me up.”

“…the end of chemo was the beginning for me.  The hard part is starting over again and moving on with life…The thought of recurrence scared the shit out of me…”

At the end of the chapter, the woman being interviewed shows her wedding album to the author.  The author, who’s own wedding album reminds her of her own recurrence which happened so soon after, has feelings of sadness about her own album still in its original box.  The author asks the woman is she wants to see her wedding album.  “If I started gushing, I wanted to do it with someone who deeply understood why.”

At the end of chapter, I wanted to call Kairol (the author) and give her a hug.

Thanks for joining us for our Chapter 13: Fluke of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in soon for our final wrap up conversation.

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?

Book Club: Everything Changes, Chapter 12

cancer book club

Welcome to the comments and discussion of Chapter 12: Naked in the Streets of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, Chapter 6: Something in the Air, Chapter 7: Mortality Bites, Chapter 8: The Myth of Eternal Optimism, Chapter 9: It Girl, Chapter 10: The Fix, and Chapter 11: Off the Map.

Let’s get started!  Chapter 12!

Mallory:

This chapter focuses on so many important topics.  Anxiety and recurrence are the two that hit home for me the most.  She talks about having a supportive spouse as a caregiver, spending time being unproductive for the first time, and so much more.

“Those empty TV days were also the first time as an adult that I had allowed myself to be completely unproductive without worrying about the consequences.  In the end, I was much more productive that I would have been if I had forced myself to work when all I wanted to do was crawl into a hole.”

I deal with feelings of fear and shame often when it comes to the battle between wanting to be productive and wanting to crawl into a hole.  Some days I listen to my body and take breaks when I need to.  Other days I pull myself through the emotional sludge.  Sometimes I know I made the right decision and other days I’m not sure which one is “better” or more productive in the long run.  Matthew Zachary of Stupid Cancer is also featured heavily in this chapter.  Some of his ideas about the world I fully agree with, other make me cringe, but he offers many insights into the realities of being a young adult cancer survivor.

Thanks for joining us for our Chapter 12: Naked in the Streets of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 13: Fluke.

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?

Book Club: Everything Changes, Chapter 11

young adult cancer book club

Welcome to the comments and discussion of Chapter 11: Off the Map of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, Chapter 6: Something in the Air, Chapter 7: Mortality Bites, Chapter 8: The Myth of Eternal Optimism, Chapter 9: It Girl, and Chapter 10: The Fix.

Let’s get started!  Chapter 11!

Mallory:

This chapter focuses on the feeling of being off the map in many different ways.  The primary person interviewed by the author in this chapter lives in a community where there are distinct barriers to receiving quality care and where speaking about illness is seen as taboo.  Emotionally, medically, geographically we may all experience feelings of being off the map in various ways during our cancer treatments and survivorships.  Isolation, communication with friends and family, communication with a physician, access to quality and supportive care…these are all ways in which we can take control, feel out of control, get lost off the map in our cancer experiences.

Thanks for joining us for our Chapter 11: Off the Map of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 12: Naked in the Streets.

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?

Book Club: Everything Changes, Chapter 10

young adult cancer book club

Welcome to the comments and discussion of Chapter 10: The Fix of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, Chapter 6: Something in the Air, Chapter 7: Mortality Bites, Chapter 8: The Myth of Eternal Optimism, and Chapter 9: It Girl.

Let’s get started!  Chapter 10!

Mallory:

The moral of this chapter is you are your own best advocate.  Know what procedures, treatments, surgeries, etc. are being used to cure your cancer and why.  If you don’t understand the side effects of something, ask.  Get a second opinion, always.  You are the boss or your own body.

I remember my own appointment with my second opinion oncologist, who I ended up receiving care from.  She spent a good 10 minutes reading out loud through a pamphlet she gave me detailing the side effects of each of the chemo drugs they would give me.  I finally had to stop her and ask, “what will happen if we do nothing?”  Without skipping a beat she replied, “oh, the cancer will kill you.”  It may seem like an odd question to you, but with all of the info she was giving me, the alternative of not getting treatment was never discussed…I wanted to know so I asked.  I’m sure glad I did.

Thanks for joining us for our Chapter 10: The Fix of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 11: Off the Map.

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?

Book Club: Everything Changes, Chapter 9

Everything Changes Chapter 9

Welcome to the comments and discussion of Chapter 9: It Girl of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, Chapter 6: Something in the Air, Chapter 7: Mortality Bites, and Chapter 8: The Myth of Eternal Optimism.

Let’s get started!  Chapter 9!

Mallory:

This chapter is really focused on the struggles that cancer causes, both for the young adult survivor but also for spouses and caregivers.  Mary Ann, the young adult survivor featured most prominently, speaks of her bodily changes, her husband’s strength and commitment to her and her care, and to the importance of improving quality of life during a diagnosis and into treatment and survivorship.  So much in her life has changed and she is still actively navigating all of it.

The resource section features a number of great organizations to help with support, financial assistance, and student life.

“When you have a disease like cancer, who you are changes and you have to find out who you’ve become and what you are supposed to do.”  Well said, Mary Ann.

Thanks for joining us for our Chapter 9: It Girl of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 10: The Fix.

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?

Book Club: Everything Changes, Chapter 8

Everything Changes book club

Welcome to the comments and discussion of Chapter 8: The Myth of Eternal Optimism of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, Chapter 6: Something in the Air, and Chapter 7: Mortality Bites.

Let’s get started!  Chapter 8!

Mary:

Hi guys! I have been MIA for several weeks now dealing with my own health issues. But I am so excited to be able to return, especially for this week’s book discussion. At the end of this chapter, there is a reference section that talks about palliative care. I have been in palliative care for over a year now and it is the best thing I have done in quite some time. I go to Emory’s Palliative Care Clinic and work with the professionals on the Supportive Care Team. I really can’t say enough wonderful, amazing, fabulous things about this clinic. Palliative care isn’t just about pain management. It’s about caring for you as a whole person.

After reading this chapter, I have realized a few things: that I am not alone in thinking some doctors have absolutely no filter to prevent themselves from making snide comments, that patients need to realize if their physician treats them badly or doesn’t provide them with the support they need it is okay to find a new physician, and that your physician should never cause you to feel poorly about yourself. Your doctor is supposed to be there for you. Not only is he/she there to prescribe the appropriate treatment for your condition, he/she is there to revise your course of therapy and provide additional or alternate treatment depending on your response. A good doctor will ask you how you are doing, understand what you are saying, and help you come up with an action plan without judging you for the way you feel.

Be honest with how you are feeling. With living in the South I find myself automatically responding “good” to the question of “how are you?” Even if you are in the grocery store and you run into your neighbor or friend, be honest. If you aren’t honest, people won’t know you need help with laundry, cleaning, yardwork, childcare, etc. It is totally okay if you feel like death warmed over or if you want to crawl under a rock and never come out. I have been there and still have days where I just want people to understand that I don’t feel well.

Finally, if you are contemplating suicide please contact your physician, social worker, or the National Suicide Prevention Lifeline at 1-800-273-TALK.

Thanks for joining us for our Chapter 8: The Myth of Eternal Optimism of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 9: It Girl.

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 Everything Changes book club?

Book Club: Everything Changes, Chapter 7

cancer and mortality

Welcome to the comments and discussion of Chapter 7: Mortality Bites of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, and Chapter 6: Something in the Air.

Let’s get started!  Chapter 7!

Mallory:

This chapter was hard for me.  The phrase mortality bites hits the nail right on the head.  Living is hard.  Living with a cancer diagnosis, manifesting itself into chronic symptoms that may or may not be taken seriously by a healthcare team bites.  Outliving a loved one bites.

“My brother’s death was an awakening for me.  For me, cancer was the C word at that point. I had to dispel a lot of fear around the C word.  I finally realized that cancer can be a vehicle for transformation, even if it means death.”

“Mourning someone I had met only once for four hours felt like an act of trespassing, as if I were sneaking into the backyard of those who were grieving the loss of Amilca as a wife, mother, a daughter, a sister, a friend.”

Man oh man…I underlined more in this chapter than in all of the other chapters combined.  Over the weekend, while at CancerCon, I had the privilege of volunteering for the Chronic, Metastatic, and Advanced Cancer session.  I walked into the session, introduced myself to the two women running the hour and a half discussion, and figured out what my role would be in time keeping and tissue monitoring.  I made it very clear that I was not a metastatic patient, respected the safe-space needed by those who were, and insisted that I therefore not actually participate in any of the sharing/participatory pieces of the session.  I knew when I walked into the room that my role would be one of quiet support and love.

It was one of the hardest hour and 30 minutes of my life.

These brave and courageous souls shared of their fears of being forgotten, their acknowledgements that death could be close or far away, and the silent truths held by those who face death and mortality every.single.day.

I had trouble holding in my emotions during various points in the session.  I looked up at the ceiling a few times, willing the tears to stay in my eyeballs.  I wiggled my toes and started messaging the other members of the steering committee with about 20 minutes to go, hoping someone could grant me access to the locked room we stored our CancerCon-magic-making supplies.  I needed a place to let it out and I knew that I could not do that while in the session or out and about the rest of the conference.

Usually, when I am scared of something difficult and cancer related, like death, my healthy peers wait it out as I speak (or blather) while keeping their distance physically and emotionally.  When I finally was able to burst through the door into the steering committee office, tears flooded from my body and I spent the next 20 minutes repeating myself and shoving starbursts into my mouth.  My fellow steering committee member hugged me with tears filling her own eyes.  Slowly, other steering committee members started coming in.  Each one would hear what I needed to say and start to cry themselves, hugging me all the while.  They stepped up, came forward, and stood with me emotionally and physically as I melted into fear and anxiety.

In that moment, I knew that I needed to be a part of CancerCon and the steering committee for the 2017 conference.  Understanding the frightening reality running rampant in the Chronic, Metastatic, and Advanced Cancer session is not for the faint at heart.  And most of my healthy peers refuse to approach the issue with any authenticity.  I get it! I really do!  It is scary thinking about an illness manifesting itself into something that cannot yet be cured.  I live with that fear though, and my fellow young adult cancer survivors do too.

Thank you to all of the young adult cancer survivors who have shared their stories with me; who have given me pieces of their courage, their warmth, and their love.  I am forever grateful for the tears, fears, laughter, joy, and love that we have given.  Here is to sharing so much more quality of life together, even in cases where quantity of life is lacking.

And to all of those metastatic warriors out there…you are my heroes.

Thanks for joining us for our Chapter 7: Mortality Bites of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 8: The Myth of Eternal Optimism.

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?

Book Club: Everything Changes, Chapter 6

young adult cancer book club

Welcome to the comments and discussion of Chapter 6: Something in the Air of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, and Chapter 5: Malignant and Indignant.

Let’s get started!  Chapter 6!

Mallory:

I wasn’t sure what to expect from the title of this chapter, “Something in the Air.”  Was it going to be about sex, air toxins, what?  While not what I expected, this chapter has been one of my favorites so far.  The first line, “…I uncovered a gigantic cancer taboo: admitting the fact that having cancer does not necessarily make someone a nice or interesting person.”  It made me laugh out loud.  Exactly as the author pointed out, this is a very taboo statement and yet so very very true.  I have met many cancer survivors in my role with Lacuna Loft, and you know what?  I don’t like all of them!  Some of them are mean, some are boring, some are self-obsessed…just like the variety you find in healthy, normal people!  This of course works in both ways.  Many of the cancer survivors that I have met have quickly become very close friends…the kind that you can text very late at night, the kind that you know you can count on.

The author also delves into dating a bit more in this chapter, unveiling personal moments of finding the right time to divulge about a history of cancer and the relief of having a loving side kick through it all.  She also gets into the contentious topic of “the good and the evil in cancer,” finding her own truths and quietly beseeching the reader to do the same.  She talks about a little bit of death and a little bit of environmental toxicity.  Such good things in this chapter.  Her resources include items about cancer and the environment and building support systems.

I’ll leave you with my favorite quote from chapter 6, “I’ve spent much of my life reading, studying, theorizing, and cancer made me want to go out and feel, touch, taste new things.  I’m more adventurous with food, more into getting hugs, I go to the petting zoo more often, but it’s not like I’m doing ecstasy or having sex in bathrooms.”

Thanks for joining us for our Chapter 6: Something in the Air of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 7: Mortality Bites.

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?

P.S.  Apologies for having some of these posts come a little late or out of order!