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. for everythingchangesbook.com

I remember when I was twelve my grandpa was dying of lung cancer and I couldn’t even speak as I sat in his hospital room. The grown-ups kicked me out before I was able to say good-bye.

When I was diagnosed with Hodgkin’s my kids were four and five. I didn’t want them to feel powerless like I did with my grandpa, but I didn’t know how to help them because having cancer made me feel so powerless.

And then I remembered a time before cancer that I was lying on the couch with a pretty bad cold and they made me soup. What they actually made was cold water, lettuce, carrots, turkey, crackers, and bread in a bowl along with a huge mess in the kitchen, but to them it was soup and their faces beamed with the pride of knowing their soup would help me feel better. I started remembering other similar instances of their efforts to help me like bringing me little teacups of water, washing the mirror on the bathroom door with soap, and spending hours scrubbing the fireplace doors with sponges. I thought that maybe with a little direction, there could be something to this.

I let them help whenever they offered without worrying about the mess they might leave behind. When I was too tired or in pain I would ask them for water, my pill bottles, a snack, or anything else I knew they were capable of. I even let them wash my hair after my lymph node biopsy when I couldn’t lift my arm. These were not just chores, they were lessons in kindness and with each task I could see that I was giving them some power over the situation and that they took pride in every little thing they could do to help.

It’s hard to parent with cancer, but it’s easy to give your kids a little power and in doing so, you may feel a little less powerless yourself.

How old are your kids? Have they been behaving differently since your diagnosis? Have they ever offered to help you out? How did it go?

Read more about young adults parenting with cancer in the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

By Jackie B-F

“What’s that scar on your neck?” I wasn’t even 20-minutes into the first day of orientation for my Master’s program and my scar had already been noticed. I have been debating the whole summer about how to disclose my cancer at my new school. I am proud of my diagnosis and I am happy to talk about my experiences with cancer, but I didn’t want cancer to be my first introduction to students and faculty. I’ve thought about some ways I can disclose my cancer at school:

I can choose to only tell some of truth. When asked about my scar at orientation, I was caught off guard and told the student about my cancer diagnosis. However, there are other ways to disclose my medical conditions that don’t involve the “C-word.” I could have said, “I had surgery” and left the conversation at that.

A wardrobe change might also be in order. I’ve accumulated a lot of cancer shirts and bracelets since being diagnosed, and I wear them proudly! However, I’ve chosen to set them aside for at least the first few weeks of school. That way I can disclose my diagnosis in a more organic way and not because my shirt says so.

I may not want to disclose to everyone at school, but letting my professors know can be very helpful. If I end up missing a lot of class, they deserve to know why, and some professors may be willing to help me catch up during their office hours. Professors are often supportive and can be a good advocate. I’ll probably let my professors know within the first few weeks of classes.

Ultimately, I have to do what feels right for me, and remember that I was accepted into school for my smarts – not my cancer.

We are asked to disclose our cancer in a variety of settings. How do you choose who to tell and who not to tell? Have you ever had to make up excuses on the spot to cover up your cancer?

To learn more about disclosure at school, your legal rights, and how the office of student disabilities can help you, read the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

By Jackie B-F

Thyroid cancer is referred to as the “good cancer” to have.  Treatment generally involves surgery followed by radioactive iodine, and cure rates for the disease are incredibly high.  After surgery, the only drugs I took were my daily hormones and a lonely round of radioactive iodine.

Less than a month after learning I was in remission, I joined a young adult cancer support group where almost everyone but me had been treated with a stem cell transplant.  My week and a half of radioactive quarantine paled in comparison to their experiences, and I felt that I wasn’t part of “the cancer club.”  I was reminded both how lucky I was and how alone I still felt, even among other young adults with cancer.

Since then, I have become active with a few young adult cancer advocacy and outdoors organizations. Unlike like the support group, participating in these organizations has affirmed my experiences as a thyroid cancer patient.  When other cancer survivors comment, “At least you got the good cancer,” I explain that my experiences haven’t been so easy and no cancer is a “good cancer.”  I went through treatment with co-morbid health issues, poor health insurance, and while living across the country from my family.  When I speak about the quarantine period required with radioactive iodine, other cancer survivors commend me for doing it all alone, and in some ways this is my right of passage into the cancer club.

It was during campfire on a First Descents trip with other young adult cancer patients that I realized my story is worthy of telling.  As I listened to other survivors whose diagnoses covered a wide spectrum, I understood that I shared in their stories.  On the most basic level, young adults with cancer know something that our non-cancer friends do not.  Many of us know what it’s like to live in a hospital, to battle insurance, and to feel isolated by a diagnosis.  Thyroid cancer patients are no different in that we too may fear recurrence, feel lonely, and are unsure about the future.  At the end of the day, regardless of our cancer type, we are all still young adults with cancer and this community is too small to have any outsiders.

For thyroid cancer patients, do you feel like a member of the ‘cancer club’?  If you have another cancer diagnosis, have you ever felt like an outsider in the young adult cancer community?

Read about life with thyroid cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.

Most of us need insurance, money, and love to make it through cancer.  But what about the smaller, less conspicuous items that helped you through the medical and physical challenges of surgery, chemo or radiation?

On my blog I often write about the emotional impacts of cancer, but today I’m all about the practical physical side. Most patients discover small must-have items, clothing, food, or paraphernalia that helped us to physically manage daily life. Here are mine:

1. Zip-up hoodies – I couldn’t lift my arms over my head to put on a shirt after surgeries for thyroid cancer

2. Paper cups and straws – During surgery they dug around in my neck and shoulders. So sore in that area, I couldn’t lift a glass or mug to drink but paper cups and straws saved the day.

3. Pillows – A mountain of pillows, even big couch cushions, were great for propping me up in bed and taking pressure off my neck.

4. PB Sandwiches – Unable to eat packaged or restaurant food while on a low iodine diet (pre- radio-active iodine treatment),  a friend baked loaves of no iodine bread and I popped zip lock bags of peanut butter sandwiches into my purse whenever I left home so I wouldn’t be stranded without food.

5. Friends’ Old Clothes – There are strict protocols for washing clothes after radio-active iodine treatment because sweat makes them contaminated.  Friends gave me five days worth of old comfy clothes they would have donated to Goodwill anyway.  I chucked them in the trash after wearing them. No laundry and no clothes with bad memories.

Pick your top five items (or more if you’d like) and leave them in the comment section, noting the kind of cancer you have and what your treatment or surgery was.  Don’t worry if someone already mentioned one of your favorite items – duplicates only reinforce how necessary and helpful the item is.

For more practical tips on coping with cancer, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

In response to my post Power of Realistic vs Power of Positive Thinking, H Lee D (aka Heather) left the comment that she’s always spoken about her cancer in the past tense. She said “I had cancer” even before she was cancer free.  This kind of language isn’t for me and isn’t found in my book Everything Changes.  I’ve never been in remission and pretending to be is medically inaccurate and too far from the emotional reality of my life.  Plus, I’ve never seen scientific evidence that our minds or our language can change the biomachanics of our tumors.

But Heather is one smart cookie, who has left dozens of insightful comments on my blog and sparked incredible conversations. So I wanted to better understand why she speaks in the past tense and asked her to write this guest post:

“I had cancer. This is how I spoke of the tumor in my chest, even before my first chemo treatment - in the past tense. My choice of language wasn’t denial — I was completely aware that after two-and-a-half weeks in the hospital, I had just been diagnosed with lymphoma and needed six months of chemo plus radiation.

Almost a year prior, I attended a three-day work training at the K-8 school where I teach. We learned to create visualizations and affirmations, and how and why they are effective. A piece of the training I used through cancer (and in other parts of my daily life) was putting myself where I wanted to be. Act as if it is so. Fake it til you make it: I had cancer.

My first clean PET scan was two months after my first treatment — earlier than medically anticipated. I believe my use of language, affirmations, visualizations all influenced my clean PET scan, but I certainly don’t give them full credit.

This is the basic premise: Your brain likes things to match. For example, if you believe you are clumsy, your brain helps ensure you trip over nothing, so that you are clumsy. Then your belief and your reality match. If you can convince your brain of something you want but currently aren’t, your brain will do what it needs to do to make everything match. It’s important to choose something you can visualize. For example, I can’t imagine myself running a 4-minute mile, so visualizing it would be futile. But I can imagine myself running a 10-minute mile, so I start there.

I alerted close friends and family that I was planning to speak in the past tense about my cancer hoping that they’d think me slightly less insane. No one said anything to me at the time, but their body language and confessions later revealed that they thought I was nuts.

When I called my mother-in-law to share the good news about my first clean scan, she said, “Well, you were right. I thought you were crazy, but you were right.” The oncology counselor at the hospital told me later that she thought I was in denial but had since come to realize that I just had a different outlook than most.”

How do you speak about your cancer? Have you ever used the past tense and if so when did you start? Do you believe language has the power to change biological processes?

Heather is a 34-year-old teacher, wife, friend, dog-mom, dancer, musician, triathlete, dreamer, personal trainer, not necessarily in that order. Check out her health and fitness blog change-is-possible.net

In the midst of radiation treatment my home was like grand central station with visitors coming and going all day long. I needed the help and the company, and was grateful to have people stopping by.

But for some patients, having visitors isn’t as easy or welcomed. Many folks don’t want anyone around when they look and feel like crap. Others want privacy and alone time. And lots of guests just don’t know how to behave in the best interest of the sickie.  So, I’ve come up with  a list of  tips for both patients and visitors:

For Patients

- Nobody is a mind reader. Email friends and family about your wishes.
- Think about who you are willing to have see you at your worst.
- Let people know if it is not okay to visit at the hospital or at home.
- Clearly broadcast your energy level and the length of visit you’d like.
- Demand people stay away if they have germs.
- If you’ve got a roommate or partner get clear with each other so if you have different desires you don’t send mixed messages to guests.

For Visitors

- Have awareness. The goal is to be helpful, even it means staying away.
- While visiting, ask what you can do to help out around the house.
- Sometimes help without asking. If the trash is full just take it out.
- Never stop by unannounced.
- Don’t overstay your welcome.
- Silence can be comforting. Offer to sit together without talking.
- Think about visiting with the sick person’s kids, partner, or caregiver allowing the sick person time to just rest

What are some of the best and worst stories you have about people who visited you when you were sick? Do you have any tips to add to the list?

Check out more about the dynamics of family and friend visits in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Was it because I was twenty-seven, a woman, or both that my doctors doubted my capacity to participate in serious dialogue about my cancer? They presented me with only the thinnest shreds of pre-digested information about my care. I played a constant charade to glean from them answers that reflected the complexity of my disease. My greatest asset: my InterArts degree in theater and choreography.

Acting classes taught me how to build a facade. I held back tears instead of bawling. I straightened my spine with confidence instead of slumping in defeat with the news of recurrence after recurrence. Employing gripping, direct eye contact, I forced my doctors to focus on me instead of shuffling papers.

A quick improviser, I read and responded to my surgeon and endocrinologist in a flash, returning their comments with complex questions. I packed rapid-fire dialogue into my five-minute appointments, the clock no longer an excuse for their Patient-101 spiels that were rungs below my level of medical comprehension.

Abandoning the role of dumbed-down patient, I favored playing a mentee eager to learn from my doctors. I changed my costume accordingly. While I preferred the snuggly garb of hoodies and sweats that accommodated my cancer lethargy, I instead wore skirts, v-neck sweaters, and makeup.

As I perfected my charade, the time, attention, and intelligent answers I received from my doctors increased. My surgeon started joking that he was going to make me his fellow and take me on rounds.

I began to wonder if I was subtly whoring myself to my doctors to get the care and consideration I deserved. They were all men. My legs are ridiculously long and I look pretty hot in a skirt. Would I have succeeded if I were overweight or wore my favorite Old Navy fleece sweats? And, if my doctors were women would my tactics still work?

When I spoke about my findings from studies I researched on Pub Med, I sandwiched my statements between heavy doses of wit and charm. Did my doctors’ male patients have to play the ditz game to camouflage their smarts?

Over the past ten-years, my doctors and I have often changed the course of my treatment based on rational problem solving ideas I presented to them that were frequently in opposition to their initial orders. I’m proud of the care I’ve received. It wasn’t always handed to me. I worked hard for it, falling apart tired to the bone when I came home from my appointments. Am I any less proud because of the tactics I used? Not at all. I’ll leave that shame for my doctors.

Have you used tactics to get your doctors to pay more attention to you or answer your questions on an in-depth level?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how other young patients manage appointments and hospital stays.

I’ve long been afraid of medication, even over-the-counter meds.  Since way before my cancer diagnosis, I was scared of what the side effects could do.  I opted for just feeling my pain or taking natural remedies instead.  But having cancer changed some of that for me.

I used to not even take Tylenol for a headache.  Now I toss back two extra-strength at the first twinge of pain.  I want to nip pain in the bud because A) Feeling pain sometimes launches me into a cancer PTSD anxiety spiral and B) Since cancer I feel like I have filled my life time quota of pain.  Why have any more than I need?

Without going into huge detail about my bowels, I’ll just say that my doctor wants me to start taking a medication that contains aspertame and might make me feel bloated and crap a lot.  (Or it might not.)  The sample is sitting on my kitchen counter.  I don’t want to take it.  And then I laugh at myself.  Aspertame is ridiculously benign compaired to the hundreds of milicuries of radioactive iodine I’ve consumed.  Can I have made it through cancer treatment and still act like such a wimp about over-the-counter, pink lemonade flavored medication?  Indeed, I can.

Has going through a serious medical illness changed your relationship to having to take medication?  Are you more or less likely to take over the counter pills now?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how young adults can manage pain.