Everything Changes - The Guide to Young Adult Cancer

I’ve taken a year-long vacation from blogging.  During this time I cared for a family member with severe dementia, and nursed him through to the end-of-life in hospice.  It was the culmination of four years of caregiving filled with anguish, love, and major health care advocacy.  It was a complete 180 being a caregiver instead of a patient.  Focusing on Alzheimer’s, a disease for which there is no cure or treatment, presented its own separate challenge and fight.

It was hard to stop blogging.  I was addicted.  But I needed to cut from my life many things I loved in order to focus my attention, almost 100%, on being a caregiver.  Ultimately, it has been good for me to not focus so heavily on my own illness and on young adult cancer.  I have discovered other parts of my identity that lay outside of my own oncology experience.

I’ve decided to resume blogging, though with a lot of new work on my plate, I’m modifying my approach.  I might post less frequently and have decided to discontinue  the comment section.  I’ve loved all the dialogue created here over the past three years (just dive into the archives for some juicy conversation).  I hope you will continue to link to my posts on your blogs, facebook pages, and twitter feeds, where you can moderate your own heated and fruitful debates about young adult cancer issues.

As always,  I continue to respond personally to every email I get from a cancer patient or loved one.  You can find my email address on the contact page above.

Wishing you strength, smarts, and maybe a bit of vengeance on your cancer journey.

Over and out,

Kairol

With 300+ posts on my blog about cancer and young adults, it can be hard to know exactly where to start.  I’ve compiled a list of the top ten posts that continue to get thousands of hits.

Top-Ten Posts

1. Your 5 Must-Have Items from Surgery & Treatment Time?

2. Do You Like Being Called Strong?

3. How Do You Prevent Errors in Your Care?

4. Smart Responses to Stupid Comments?

5. How to Ask For Your Medical Bill to be Reduced?

6. Your Best Advice To A Newly Diagnosed Patient?

7. Power of Positive Thinking vs. Realistic Thinking?

8. Did Cancer Impact Your Finances?

9. Scared of Every Little Ache and Pain?

10. Have You Ever Seen A Therapist?

Special searches.
If you are looking for a specific topic, scroll down the right side of this page, click on ‘Hot Topics’, or use the ‘Search’ box just above that to enter keywords about issues that are on your mind.

If you have been reading and commenting over the years, thanks to contributing to the popularity of the blog.  If you are new, welcome aboard.

Over and out,

Kairol

Sifting through the emotional, administrative, and financial trauma of dealing with illness, being sick ultimately all comes back to the body.  So for this installment of Patients for A Moment, we asked that bloggers submit posts about the down and dirty physical world of their disease.

Ever pulled a serious MacGyver providing your own home healthcare with saline solution and a turkey baster?  Duncan Cross has and writes about it in on the Duncan Cross post Duncan 1, Hospital 0.

“I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…”  Need I say more about Leslie Rott’s post The Ultimate Coyote Ugly on her ever fantastic blog Getting Closer to Myself.

Most glossy doctors office disease brochures describe only the short list of limitations and side effects.  In Rheumatoid Arthritis:Disability Makes Things Difficult, RA Warrior Kelly Young lists the longer version of things you can’t do when your hands don’t work. It’s shocking.

The flip side of limitation is the day dreamy, anything goes fantasy life of that Fibro Mom creates on Fibro World in her Top 10 Things in a Perfect Fibromyalgia World.

From their nose to yours? School your co-workers in why they need to stay home when they’re sick with this  excellent primer Thank You, H1N1 Swine Flu from 21 year leukemia survivor Selena of Oh My Aches and Pains!

A shovel, knapsack, bowl of candy and diaper ointment. Not just for cancer patients, check out my post from last week Your 5 Must-Have Items from Surgery & Treatment Time?, along with over 200 reader suggestions.

Limitations, daydreams, MacGyver stories?  Leave’em in the comment section.  I’d love to hear.

It’s time to clean out my cancer closet.  Between living with cancer for nine years and researching and writing a book on young adult cancer for five years, I’ve accumulated an abundance of oncology articles, books, and magazines.

The task is more emotional than I anticipated.  Lodged in my collection of scientific data are notes I scribbled in the margins, like: “None of these stats apply to me. Is it time to abandon Western medicine?” I’m still am not cured.  Thankfully I have learned how to manage my cancer better now than when I wrote that note.  None the less, it’s sad reading my paper trail of desperation.

It’s hard getting rid of my books on palliative and end of life care.  They were invaluable in helping me write resource sections for Everything Changes.  A loud voice says, “Hang on to these Kairol, you might need them someday for your own care.”  Cleaning my cancer closet is highlighting that over the past two years, I’ve come to expect that I am going to get a secondary form of cancer.  I hope I am wrong.  I don’t get worked up about it.  But it’s a thought I can’t shake.

Some survivors make scrapbooks about their treatment.  When I last  moved apartments, I culled my collection of get well cards from a  mountainous box to one manila envelop. I might even want to ditch that now too.  Over time, I cling less to my cancer memorabilia.  Yet, I still commemorate my cancer care almost daily through my writing.

I like my perspectives on cancer care.  I want to continue blogging, writing columns, speaking, and working on special projects with organizations. But lately I’m making a shift from having two feet in the cancer world to one foot in and one foot out.  For example, at the end of this month, I’m stepping down as co-host on The Stupid Cancer Show.

My identity as a cancer patient is shifting.  It isn’t easy.  But it is good.  Growing pains are better than cancer pain.

How much do you want to remember you cancer care and how much do you want to move on?  Do you save research information or get well cards?  Do you ever anticipate getting a secondary form of cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how Geoff’s identity changed as a 13 year survivor diagnosed at 22.

Today I’m hosting Patients For A Moment, a bi-weekly blog carnival with links to select patient blogs.  I’ve created four themes for this edition. Enjoy reading and be sure to catch the November 18 installment on Chronic Babe.

Melting My Stone Cold Heart
After the flood of breast cancer stories in Pinktober, I wondered if patient stories could still melt me or if I’d become inoculated and immune to the tender heartedness of illness.  Nope.  Nine year old Chloe made me melt.  Steve Catoe writes about her in A Beautiful Heart on his blog Adventures of A Funky Heart.

Intimacy is palpable as banter unfolds between Alex Hohmann and his nurse Jill in Laughter Where You Least Expect It on Aegletes: Alex’s thoughts on cancer, politics, being gay, music and so much more.

Can we wear our feelings and kvetch about a new diagnosis or do we have to be good solders fighting the good fight?, wonders Barbara Kivowitz in The Shape of Grief on her blog In Sickness and In Health.

Helping 101
Need Cliff Notes for schooling family and friends on how to help you when you’re sick?  See Bridget McCullough’s  Back From the Brink on My Cancer Deployment.

Chris Blumer’s  A Streetcar Named Dilaudid on Chemo and Vino dives into the emotionally charged terrain of saying ‘Thank You’.

Do you get help from God or find strength in flying solo?  Here’s the post that elicited the comment “Nobody likes someone pissing in their Jesus flakes.”   What’s Your Cancer and Religion Connection? on my blog Everything Changes.

Practically Speaking
Young adults are the largest group of uninsured adults in the U.S., forcing us to be practical and clever about getting care.  Leslie Rott writes about    The Things We Do For Health Insurance…Er…I Mean…Love on Getting Closer to Myself.

Living with chronic illness?  Need tips on how to pack a suitcase and so much more? Visit Chronic Babe and check out Fibromyalgia: HealthWomen host tons of new tips, including videos with Editrix Jenni Prokopy. We know she can write but she’s damn articulate in front of the camera too.

Looking for practical excuses to ditch a bad date or escape a spousal argument? Read Duncan Cross‘s hilarious  Dr. Cross’s Compendium of Useful Illnesses.

Laurie Edward’s writes about handling life Priorities in the “gray area in between the everyday and the extreme” on A Chronic Dose.

Eating is a pretty simple daily task - well sometimes.  Cathy Bueti talks about how juicing became an obsession in My Juicer is Dusty on In My Life.

Thinking is a pretty simple daily task - sometimes.  Kate Burton outs her stammering brain fog in My Chemo Brain on After Cancer, Now What.

Dictionary Love
My inner-author and inner-patient geek out together over words, language, and medical meanings.  I’m glad to know I’m not the only one.  Kelly Young dissects the technical meaning of ‘complications’ in  Reasons to stop saying “Complications” of Rheumatoid Arthritis on Rheumatoid Arthritis Warrior.

Dr. Wendy Harpham asks ‘What’s the difference between a disease and illness?’ in “Disease” or “Illness” on Wendy Harpham on Healthy Survivorship .

Selena Inouye’s S word in Each Has Their Suffering on Oh My Aches and Pains.

Pat Steer tells what it means to be a statistic in I am A Statistic on Life Out Loud.

Have fun reading, then stop back to let me know which blogs you visited, which posts struck you the most and why.

I have spent the last six years reading, researching, and writing about cancer.  I am so fulfilled by this work, but sometimes I wonder if it is always the healthiest choice of how to spend my time.

My cancer has never been in remission and it could be with me for a long while yet. Cancer is an uninvited companion in my body, but that doesn’t mean it always has to be on my mind.  Usually my expertise about young adult cancer seems like a great asset that benefits my own care and helps others too.  But lately I’ve been wondering if I have built a little cancer trap for myself.

Right now I have the luxury of feeling well.  I don’t look or feel like a cancer patient, but I think and write like one.  What would I write about and how would I spend my time if I moved cancer from the front burner to the back burner in my mind?  I don’t even know the answer to this question. And that’s a bad sign. Perhaps while I’m feeling well, I should focus a bit more on the world beyond cancer.

So I’m giving myself a little assignment.  For the next few weeks, I’m going to write one post per week that is not about cancer.  Just for the hell of it.  Just to break my little addiction to the small world of illness I’ve built up around myself.  I hope you’ll still read and comment as I experiment with the great beyond.

Do you ever feel like you need a break from focusing on illness or that it consumes too much of your identity? Do you volunteer for cancer organizations, work in the healthcare field, blog or write about illness on top of being a patient too? I’m taking requests: What would you like me to write about in my non-healthcare posts?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about coping with life beyond illness.

Fear is something I have experienced much of in the last nine years since my diagnosis, and my feeling is that it is not something that I “surmount” or “overcome”, but something that I go “through”.  It is not always pleasant, and coming out on the other side is not always a victory march. Sometimes the only benefit to living through my fear is the reminder that I am human and that suffering is part of the experience.

Sounds depressing huh?  Well not really.  For me I think that living through fear is the stuff that compassion is made of.  It is what allows me to understand and empathize with other people’s suffering.  When writing and researching my book Everything Changes, I sat in the living rooms of so many twenty and thirty-something  cancer patients who confessed to me their most private thoughts about living young with illness.  They talked to me because I listen and I get it, because I have been there and done that.  And when I say been there and done that I’m not talking about cancer, I’m talking about walking through fear.  Fear is a monster but it is also a common denominator that connects me to other people’s experiences of life.

I am living with two tumors in my neck that don’t uptake radio active iodine treatment and there is a limit to how many surgeries I can have.  Sometimes fear is too much for me and I have to check out from it by sticking my head in the TV or popping a xanax.  I cannot walk through fear 24/7.  But I do walk through it a lot.  And it’s scary.  I’d so very much prefer living an alternate life with an alternate medical history, but I do recognize that living with fear just means that I am human, and for now, I have to take what I’ve got.

How do you cope with fear?  Has the way you handled fear changed the longer you’ve lived with illness?  Did you have any idea just how much the cowardly lion looks like a cheap drag queen?

To learn more about how other young adult cancer patients cope with fear, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My surgery was on Halloween.  I wore a tiara and red heels to the hospital.  That’s easy to remember.  Ask me the date or year of my diagnosis and I have no idea.  Cancer has fried my inner calendar.

Daily on Planet Cancer and Facebook I see young adult cancer patients celebrating their cancerversary. My cancerversary doesn’t mean much to me.  Maybe it’s because I’ve never been cancer free so there is no end with which to book mark the beginning? Nah, I think  I’m just more focused on the day to day than the milestones.

Yesterday, I wondered how long ago I started this blog.  I looked it up.  June 3rd.  Exactly one year.  So, I want to dedicate this post (can you say Delilah?) to my fantastic friend Lisa Friedman.  She hounded me for about two years to start a blog.  I was totally resistant.  What would I have to blog about everyday?  I found her nagging irritating and she probably found my excuses pathetic.

Well, Lisa, a year later I’m addicted to blogging and I thank you.   I have more to blog about than my time allows: I’m finishing posts and series on medical debt, cancer and parenting, patient bills of rights, and  the taboo topic of cancer and domestic violence.

Thanks to all of you readers for your brazen comments and sharing your vulnerable experiences.  Without you this would be a one sided conversation and instead it is so much more.  Happy blogoversary to us all.

Do you celebrate your cancerversary?  What would you like to see me blog about during year number two?