Everything Changes - The Guide to Young Adult Cancer

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

I cannot get rid of my cancer. But lately I’ve wanted to get rid of things that remind me of my cancer.

Prior to my diagnosis, I felt like everyday objects could hold power. A glittery ribbon on a package sent by my best friend had the ability to make me feel more powerful in the world. Coveting the ribbon, I’d set it on top of my dresser and look at it daily. But I’m not that gal anymore.  Cancer has obliterated a lot of my desire and ability to feel things on a deeper level. I’ve got enough sensations and emotions flying around in my head thanks to medically induced hyperthyroidism. In response to this overload,  I want to scale down keeping things simple.  I don’t have the energy to feel so attached to objects and sentiments.  The ribbon is now a ribbon - not a reminder. And it’s no longer on my dresser.

It’s getting colder outside. I’ve switched my summer jammies out for my winter PJ’s. I have six Calvin Klein PJ pants I bought nine years ago at Marshall’s after I was diagnosed. They were not retail therapy purchases, but rather my new uniform. I’ve racked up thousands of hours in bed and on my couch in these clothes. The fabric is thinning. The legs have grown. I’m a total miser and know I could get another season out of them. But do I want to go to bed every night wearing my thyroid cancer uniform?

These pants are just pants. They don’t hold any power or negative energy. But they did come from a time in my life I don’t want to remember so much anymore. It would be better for the environment if I got a tenth and last season out of them. But I think it would be better for me if I didn’t. I’m heading to Marshall’s tomorrow for new PJs. While I’d like this to be a casual shopping trip, there might be some ceremonial undertones and maybe a lump in my throat. That is, a lump in addition to the two tumors nesting in my neck.

Do certain objects remind you of cancer? Do you covet them or want to trash them?

Read more about coping with the before’s and after’s of life with cancer. Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I just got back from a ten-day heavenly trip to Georgia with Shannon: lush palms, Spanish moss, butterflies, lazy boating on a lotus lined river, and my mystery fever (just for a day).

I get mystery fevers every few weeks and have for a long time.  I down Tylenol, drink tons of water, lay low that day and don’t push it the next day.  If I get a little cancer PTSD, I take xanax and snuggle with Shannon.

On vacation, the day after my mystery fever, we visited the gorgeous Savannah-Ogeechee Canal with a 1-mile roundtrip walk. The heat index was 100 (which I actually love - call me crazy), the terrain flat and stunning.  I heard a voice in my head saying with confidence: “Don’t do the walk.  I know my limits…. Blog about this when I get home.”

Knowing my limits is instinctual now, but it wasn’t at the beginning of my cancer ride.  I used to push myself hard, like a poster-child cancer patient who was getting the most out of life. I was like Wafa’a, a lymphoma patient in Chapter 3 of Everything Changes, who was addicted to clubbing.  I didn’t want to feel left out, be home alone, or let cancer get the best of me.

But over time I’ve changed my definition of what the best of me is.  The best of me is not Kairol conquering a hiking trail in the beauty of nature, nor is it me feeling sexy in a great summer outfit, nor dancing my heart out in ballet class.  The best of me is when I can look long and hard in the mirror and just be satisfied with who I am no matter what I am doing or how I am feeling. There are no limits to this “best of me.”  I know, I’ve done this look’n-in-the-mirror as a pasty white ghost in a hospital gown about to swallow 150 millicuries of radiation.  If I can be the best of me in that situation, then I suspect it is fool-proof.

Recognizing the parts of me that are limitless makes it so much easier to accept my limits.  No big hike?  No biggie. I sat on a rocking chair at the ranger station and looked at the sky.   It was pretty lovely.  Ultimately I don’t know if it’s cancer that taught me to know my limits, or if it’s just part of being a young adult who is maturing and happens to have a few tumors in my neck.

Do you have a hard time knowing what your limits are?  Do you push them, respect them, hate them?  Has this changed for you over the course of your illness?

Read more about Wafa’a the cancer clubbing queen in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Our bodies are great at remembering hard times: The smell of alcohol in a hospital makes my heart race.  I can’t wear turtlenecks because they remind me of the compression bandage on my throat after my thyroidectomy.

But the flip side is that our bodies can conjure great experiences too.  Here’s one: My body remembers the days when I was a dancer.  Heat and humidity meant my muscles were always flexible, pliable, and ready to go.  I could enter the studio and launch into the fun stuff with little need to warm up.  Now whenever I’m in heat and humidity, I feel totally motivated to do physical exercise.  (Crazy I know.)

Before my second surgery, I requested to speak with a chaplain.  I got a Lutheran minister.  I was born Jewish, but I’m not religious, and don’t believe in god.  Still, I love hospital chaplains.  In fact, if there were such a thing as God in my mind, he/she might appear to me in the form of a hospital chaplain.

He got me to start visualizing what it was like to relax in bed with my husband.  Yes, it sounded kinda trashy and weird coming from a minister, and freaked me out at first.  But I realized that he knew I loved my husband to pieces, it was really hard being in a hospital in a different city than where I live, and he was trying to make me feel at home and relaxed.  He asked me all about my bedroom.  I told him about the pale yellow walls, my mahogany bureau that belonged to my grandma, and how great it is to dive into bed and put my head on my husband’s chest.  It totally worked.  When the chaplain left I didn’t want my husband or family to come back into the room.  I was so peaceful and relaxed I wanted to be alone.

The words visualization and imagery sound so hokey and new agey to me.  But I guess that is what it was.  And it totally worked.

Have you ever used visualization or imagery to coax yourself into a better mental space during illness?  Was it useful?  Did you use the generic peaceful river scene or a place you had actually experienced before?

Many of you have said your favorite part of my book is HollyAnna’s kick ass cancer and river visualization scene read.  Read it in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Patients for A Moment is a blog carnival by/for/about patients.  Every other week Duncan Cross, blogger extraordinare, solicits posts from patient bloggers.  He then features them all together in a singular post on his blog.  Now he is passing the torch.  Twice a month, a new blogger will host Patients for A Moment.  This is my week to host.  Catch the next one on August 12 on Adventures of a Funky Heart.  To learn more or read the Patient for a Moment archives, visit:

Patients for a Moment #4

In his post The Albatross, Duncan Cross writes profoundly about my favorite illness subject: s-e-x.

I used to take pride in being an overachiever, now I balk at it.  Read Baldylocks’s Exceeding Hyperdrive on The Adventures of Baldylocks: hula hoop video included.

Did you know more patients die each year from medical errors than from breast cancer?  Patient safety receives far too little attention, so I was excited that Florence dot Com wrote about it in her post I’m So Very Sorry.

On Brass and Ivory, Lisa Emrich asks an in-your-face, utterly informed, and armed with statistics kinda question about prescription drug coverage to a panel of doctors at the National Press Club, in Not Your Typical Patient. Lisa is my hero.

Novel Patient takes a flipcam to record her second infusion in Rituxan Take Two, where we watch a mundane hospital routine become personal.

Aviva from Sick Momma has been asked 100 times by her 4-year-old daughter “Mommy, when are you going to die?”  Here’s her answer in From The Mouths of Babes.

Leslie, from Getting Closer to Myself, fuses sociological perspectives on health and illness with her most recent flare of lupus, in What Does It Mean To Live In  A ‘Remission Society’?

Laurie Edwards at A Chronic Dose writes about blogging in the illness community and how it has made her a less judgemental person in On Listening and Judging.

Kate at After Cancer, Now What writes about Scars As Fashion Statements.

Cathy Bueti writes about olfactory senses and PTSD in What’s That Smell?? on her blog In My Life.

If you’re ever terrified of getting an endoscopy, Kim from Emergiblog will put your mind at ease with her post I Went, They Scoped, Now Starbucks is History.

I’d love to know which posts you’ve read and what struck you the most.  Leave a comment below.

The Everything Changes blog is a companion to my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Both book and blog are resources for anyone living with chronic illness.  All are welcome!