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

By Sarah J.

I keep finding myself thinking: If my doctor gives me a few months to live, would I want to live them the way I have been? The answer of course is no. I’m sure I’m not the first cancer patient who thought about quitting their job, moving to a tropical island, and having a torrid affair with a cabana boy (or girl) after writing a memoir.

Yet here I am today, back to the same old grind as before cancer with only a few changes. Why? Reality. Medical and credit card bills prevent any job quitting or island hopping. Since cancer entered my life, and especially during my transition from cancer patient back to an average Jolene, I have struggled to find balance between the reality of my life and that feeling that I should be out living it my way. I call this “Life’s Too Short Syndrome”.  Although I haven’t found a cure for this syndrome, I’ve discovered a few ways to make the reality of life easier to live with.

1. I created a bucket list. Seeing what I really wanted to do took away from that overwhelming feeling of there being so much I hadn’t done. In May I crossed taking a motorcycle class off the list, and I’m always checking craigslist for a cheap piano.

2. I set manageable goals for myself. I can’t quit my job, but I went back to school so that I’ll be able to get a job doing something I enjoy. I can’t afford a trip to Alaska or a tattoo sleeve, but I’ve opened a secret savings account just for me.

3. I try to tell the people in my life how I feel about them. (As much as I can without being creepy.)  I feel better knowing that I told them how I feel when we part ways…just in case.

4. I let more things go than I used to. Work drama and office politics used to drive me crazy, but now I try to ask myself if the situation falls into the ‘my problem’ pile or the ‘not my problem’ pile. When the kids are making a mess, I try to see the beauty in their play instead of thinking about what the house looks like.

Still, there are times I find myself going back to that original question. Maybe there isn’t an answer. Maybe I’m just supposed to do the best I can no matter how short life is.

How do you find a balance between the feeling that life is too short and reality? Do you think younger cancer patients experience this conundrum differently than older patients?

Read more about coping with the pressures of ‘Life Is Too Short’ in the book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

After going throuugh cancer treatment, you’d think that the small aches and pains of life - like having “the trots” as my grandmother would say - are no big deal.  Not for me.  Now, when I feel even the smallest pain, I flip out.

A few weeks before one of my big scans, I had a horrible upset stomach probably from something I ate.  I was on the toilet for hours in total panic mode: Sweat rained off my body onto the bathroom floor.  I was shaking so badly my feet sounded like they were tap dancing.  Logic left my mind and I felt like I was going through treatment all over again.

I try to go on the defensive at the first sign of an ache or pain.  I fight against wondering if my upset stomach is a long-term side effects surfacing or a secondary form of cancer.  I get logical telling myself that if I had a new form of cancer or a recurrence, I would probably have repeated symptoms not an isolated incident.

I pop a Tylenol, Advil, Pepto at the first sign of feeling sick.  If I squash the symptoms of small aches and pains, it helps to I curb my fears.  Prior to cancer I was little miss natural-homeopath.  I never even took Tylenol for fevers or headaches.  Now, I figure that after swallowing two enormous doses of radioactive iodine, my body probably considers over-the-counter drugs to be a walk in the park.

When I’m suddenly hit with a harsh stomach bug or I spike a fever, it’s xanax time.  It chills me out and keeps me from going to that illogical place of fear.  And I also try to talk to someone who gets it and isn’t going to make me feel like the hypochondriac I am.  I want someone soothing who is going to say, “Of course this is scary stuff.  After all, you’ve had cancer.”

Do you ever suffer from irrational fears when you feel aches and pains?  Where does your mind go and how do you bring it back?

To learn more about cancer, chronic illness, and post-traumatic stress, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I am a huge daydreamer.  My mind is a separate universe with lots – sometimes too much - going on in it.  This can be really helpful when I want to vanish from a situation that I am unable to actually physically escape from.

This seems like a good topic to talk about now, either for those of you who need a mental vacation from illness, or a mental getaway from too much family togetherness around the holidays.

When I am laying on a table getting ultrasounds, I choreography ballets in my mind.  I also love obsessing over the details of dinner parties – I plan menus, table settings, and fantasize about floral arrangements.  I’m also quite addicted to mental wedding planning.  It’s all pretty girlie, I know.  My own wedding got me through a years worth of cancer scans, and now I have moved on to making mental schemes about my friends weddings too.  (Congratulations Dan and Sara on your engagement!)

When I am waiting for test results or anxious about new symptoms occurring in my body, I zone out on apartmenttherapy.com.  It is heaven online.  I am also really into looking at the furniture listings on craigslist.

Without my vivid imagination and ability to totally check out when needed, I think I would have had a serious mental breakdown by now.

Do you daydream when you are stressed out, need to escape your surroundings, or get a break from medical hell or too much family time?  Where does your mind go?

Learn about Greg’s boat building daydreams in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

When I was first diagnosed with cancer, everybody and their mother was telling me what to do, how to handle it.  Some advice was so off it made me want to stick my fingers in my ears and chant “blah, blah, blah” like a three year old.

This is one of many reasons why I wrote my book Everything Changes.  I wanted advice that didn’t make me regress to toddlerhood.  I wanted really smart advice that I hadn’t seen anywhere else.  I wasn’t finding it in other books or cards or tee shirts.  So I found it in long intimate conversations with other cancer patients.

The end of my five-hour conversation with Wafa’a really stuck out to me.  She described herself as always being hyper with fear, constantly on the run, going clubbing, to yoga, hanging out with friends.  (Yep, that gorgeous woman with the disco ball is Wafa’a.) And, she was a ball of energy in our conversation too – quite wise but loaded with freneticism.  And then at the end of our conversation, she busted out with this really calm, clear statement that blew me away.  Here it is:

“Right now, I just tell myself what I would tell anyone who just got diagnosed: It’s just one day at a time. Remember to breathe. Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you.”

I’m curious, if you were to give advice to someone who was recently diagnosed, what would you say?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more words of wisdom from Wafa’a.

I keep waking up at 4:48 AM.  Sometimes a few minutes earlier or later.  I hate it.  But I know I’m not alone.  I’ve talked with a handful of breast cancer bloggers this week and discovered we all use blogging as a great way to deal with being awake at night.

Sometimes I can clearly identify what is keeping me awake: a doctor’s appointment or test on the horizon.  Sometimes even good events:  my excitement a few weeks ago about being interviewed as a young cancer patient on Fresh Air with Terry Gross (she is my #1 role model/heroine.)  But, often I’m just up for reasons I can’t figure out and I don’t particularly feel like scavenging the back of my mind to find the answer.

When I’m up, I get out of bed, go to my laptop, and work.  Lately it’s the only thing that distracts me – even when I lay in bed reading, my anxious thoughts take over the words on the page.  But, there must be a more peaceful middle ground in the hush of my night between tossing and turning and slamming into work mode.

People with weakened immune systems seem to need sleep the most, but the very nature of us being sick is often what grates on our minds keeping us awake.  A recently published article in the Archives of Internal Medical shows that people getting fewer than seven hours of less have less resistance to cold viruses than people getting eight hours or more. 

One thing that I know helps me is I never describe my being awake as insomnia.  (Though I can see how for people with a serious sleep disorder it is a useful term that helps you get appropriate treatment.)

Do you ever have a hard time sleeping?  Is it better or worse at certain times?  What do you do when you are awake at night?  How does it affect your life?

Read Everything Chanages: The Insider’s Guide to Cancer in Your 20s and 30s to learn about the about profound thoughts that other young adult cancer patients have when they are up at night.

When I lived in San Francisco, nobody batted an eyelash at dropping into casual conversation mention of a trip to their therapist.  “Oh, I had a really great breakthrough at my therapy session yesterday” was on conversational par with telling someone “I tried a fantastic new recipe for kale smoothies.”

But San Francisco is not the rest of the country.  (In fact when I moved to Chicago, I realized that San Francisco is sort of its own country.)  Out here in the rest of the world, therapy is often seen as a luxury item or something that crazy people do.  There can be a lot of resistance, embarrassment, and silence about seeing a therapist.  So where is the middle ground for chronically ill patients who are struggling with the stress of their disease and need some help?

I am dedicating this post to a young adult cancer patient who I have become extremely close with over the past three years.  She has been through the wringer with cancer and endless chemotherapy.  She is in a funk and it’s totally understandable.  25% of all cancer patients suffer from depression, and the rate is even higher for young adults. But, my friend lives in the deep south where nobody talks about seeing a therapist. In our last conversation, I got the sense that the idea of going to therapy made her feel like a freak.  Her oncologist has suggested it many times; I thought it might sit better if she heard the experiences of other patients who are trying to manage their own emotional ups and downs with cancer and chronic illnesses.

Give her your therapy 101: Have you ever seen a therapist because of depression, stress, or anxiety related to your illness?  What did you talk about?  Was it useful or not?   How is it different than talking to a friend or your partner?  What other ways have you coped with depression?

To learn more about illness and emotional support, read about Tracy in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My mom and dad drove to Chicago for an impromptu Labor Day weekend visit.  My mom sat by my computer this morning as I checked my email.  We began a conversation about Wendy Harpham’s blog post on “What doesn’t kill you makes you stronger.”

Cancer not only sucks for me, but it hugely sucks for my parents to have watched me go through it. I asked my mom what she says when someone tells her “What does not kill you makes you stronger.”  Her reply: “I’d rather be weak.”  I love my mom’s line of thinking here.  It is so her: bold, tactful, and humble.

I think and write a lot about ‘What is strength?’ ‘What is weakness?’  It seems to me the cancer community has blown out of proportion the concept of strength. My back has been up against the oncology wall many times when I’ve gone under the knife or swallowed a radioactive iodine pill.  I’ve surmounted these challenges not because I’m strong, but because the alternative means dying.  It is strange to have placed on me such lofty personality judgments and descriptors like strength, courage, and inspiration in response to having gone through situations that stink and about which I have no other choice.

In Everything Changes, I interviewed Jill, a 38-year-old breast cancer patient.  She said, “The last thing I want is people cheering me on because I had a disease that I didn’t want, was miserable getting through, and wish I never had.  That should not be my moment of fame.”

I agree with her.  I’m not saying don’t celebrate the fact that I’m still alive.  And I think it is great to honor cancer patients and recognize the challenges we face.  But don’t call me strong when I have no other choice.  It discounts the many nights that I sobbed alone into my pillow and felt cowardice in every inch of my body.  I don’t want to erase those moments with a clean sweep of ‘strength washing’; one of the best by-products of my  cancer is that it has helped me befriend weakness.  I no longer think of weakness as a negative term.  In fact, I’m pretty damn proud that I can let myself feel scared and vulnerable.  After all, cancer is scary business.

What is your response when someone says “What does not kill you makes you stronger?”   What do you most want to be celebrated for?  If you have a different illness, is there a lot of “strength talk” about your disease?

For more encouragement on finding strength through vulnerability, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

If you’ve read Everything Changes, you know the saga of my sudden onset cancer claustrophobia.   Since cancer, sitting on an airplane feels to me like the Star Wars trash compactor scene.  I’ve chalked it up to either post-traumatic stress disorder, or the anxiety that can be a common side effect of the high doses of thyroid hormones I’m on.

Over the past couple of years xanax has become my flying friend.  Without xanax I could not have flown to my San Francisco surgery, checks ups at Memorial Sloan Kettering, or to see my friends and family.  I also only fly Southwest because they are super sweet and let me sit in the front row where I can see the door.

But something totally odd has happened: with no explanation, my raging claustrophobia has quite suddenly simmered down.  I’ve flown xanax-free on my past four trips to speaking engagements and book parties.

This past week I was speaking in Pittsburgh.  I woke up one morning on the trip and in that limbo morning mind state of half-dreaming, I confused being wheeled into surgery and getting anesthesia with boarding a plane and flying.  For just a moment, the two were the same.  I started freaking out, but my phone rang and woke me up.  It was amazing to see my two fears come so head to head in my mind.

I am thankful that my mind is chilling out.  And, I’m really curious about the mystery of what has made this go away.  If I knew, I’d share my secret.  Have you developed any fears or anxieties since your diagnosis, or as the result of any other illness or trauma?  How have you coped with it?  Has yours ebbed and flowed?  Ever suddenly receded like mine?  Does anxiety ever hinder your daily activities?