November 27, 2012

Young Adult Cancer and Practical Planning

While writing my book Everything Changes, I met with patients on the fringe of death and those for whom cancer was a horrible incident from which they would fully recover.  Regardless of the gravity of their illness, many young cancer patients think about end-of-life issues.

When friends and family are rooting for your health and thinking positively, it can be really challenging finding someone willing to listen to your needs and desires around complex medical decisions, end-of-life care, and how you want to be remembered after you are gone.  That’s why I was thrilled to discover Voicing My Choices: A Planning Guide for Adolescents and Young Adults.  Having a document which brings up these issues in non-threatening language can really help steer the conversation.  And many parts of this guide become legally binding advanced directives too.

Some people find grim and scary the topic of end-of-life planning.  Others find it a relief to talk and plan practically for the inevitable.  Whether it is three years or sixty years from now, the bottom-line that my husband loves to joke about is that none of us are getting out of here alive!  So why not at least be prepared?


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November 01, 2012

Why I’ve Gone Missing for A Year.


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,


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July 23, 2012

Top-10 Quick Reads for Young Adult Cancer Patients?


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,


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September 08, 2011

Parenting With Cancer: How to Empower Your Kids?

By Sarah J. for

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.

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September 06, 2011

Back To School With Cancer?

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.

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September 03, 2011

Are You an Athlete Living with Cancer?

By Kristen Schindler

Cancer has a way of destroying the parts of you that you define yourself by. I felt cancer destroyed my ability to push my body to do great things.  I am an athlete, but my treatment for Hodgkin’s Lymphoma sucked away most of my energy. I played softball in college, and have invested years upon years into my athletic career. It took only six months of chemotherapy for my body to lose most of the muscle and endurance I had built up over 12 years.

I had expected to struggle physically while I went through treatment. And I even planned to give my body some time to recover once my treatment had ended.  However, I was shocked when three months out of treatment, my energy had not bounced back according to the three month timeline my doctor had given me.

This process of rebuilding muscle, strength, and lung capacity, is anger producing and depressing at times. It is a constant comparison to the pre-cancer me. I am unsure if I will ever be the athlete I was before and I do not have time to train and workout like I did when I was in college. I am terrified that my body will never fully recover from cancer, and my athletic ability is the most glaring indication of that.

I have slowly learned to give myself a break, and relish in my small accomplishments. I still want more, but I am realizing I am in the midst of moving forward. I played softball this summer, and I began to see my old self begin to shine through while I pitched multiple games each weekend. Cancer temporarily took away certain self defining characteristics, but my drive and ambition to be better and push myself is one characteristic that has not been altered.

Were you an athlete or avid exerciser prior to cancer and how has your identity changed since your diagnosis?

To learn more about how young adults handle rapid changes in their identity after being diagnosed with a chronic illness, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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September 01, 2011

Do Cancer Support Groups Work For You?

By Kairol Rosenthal

During my stint with cancer, I’ve attended both thyroid cancer and young adult cancer groups.  They ranged from excellent to abysmal.  Here are six tips I’ve come up with for making the most out of a support group experience. I’m curious if you’ve ever tried them:

1. Contact the leader first to see if it’s a good match for you. Ask if participants have a similar disease type or variation as you, what stage of their disease are they in, if the focus is emotional support or swapping practical medical coping strategies. If age, relationship status, race and ethnicity and other personal factors are important to you, ask about the demographics of the group.

2. Try a few meetings. Sometimes groups vary hugely from meeting to meeting depending on who is there and what issues are coming up.  Give it more than one shot.

3. Go out on a limb. If you want to discuss an issue that nobody is talking about, be daring and bring it up yourself.  Many support group participants are often waiting for that one person to talk about the elephant in the room.

4. Find your wonder twin. Sometimes a support group is a great place to meet one person who you really connect with.  It is perfectly fine for you to ditch the support group and continue to meet for one-on-one support with each other over coffee.

5. Chose a format that’s right for you. Telephone, online support groups, social networking groups, one-on-one peer support through matching organizations. People have even told me that reading Everything Changes was their support group.  If one format of support group isn’t right for you, find one that is.

6. Don’t feel guilty or badly if you are not a support group person. The point is to get support if you need it and it doesn’t have to always come from a group.  I personally find better support through my friends who do not have cancer than I do through organized support groups of people my own age living with my disease.  I’m okay with that.

Have you ever attended a support group?  What made it either good or not so hot? Got any ‘support group success tips’ to add to the list?

Check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, it’s like a portable, paperback support group.

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August 30, 2011

‘The Cancer Club’: Do Thyroid Cancer Patients Belong?

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.

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August 25, 2011

Feeling Pressure of ‘Life’s Too Short’?

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.

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August 23, 2011

Getting Your Medical Records for Free or Low Cost?

By Jackie B-F and Kairol Rosenthal

As a patient, you have the right to access your own medical records for a “reasonable” fee, according to federal HIPAA laws.  Most doctors’ offices and hospitals charge copying fees, which range widely in price, and add up if you have a thick chart. Here are a few ways to get your records for free or at reduced cost:

1. Make friends with the office staff. Receptionists and nurses deserve to be treated well for all the work they do for us and will often reciprocate our kindness.  Some may copy your records for free.  Be sure to say “thank you!”

2. Ask for your records a little at a time. Did your doc just read your lab report over the phone? Ask them to drop a copy in the mail.  Did they explain your pathology report during your appointment? Ask for a copy for your personal files.  Staff may be more inclined to print for free three pages here and there rather than 200 all at once.  And, if their office outsources medical records copying, they might rather make a three-page report using their own copier than process with their outside vendor the paperwork for such a small order.  Also, doctors and hospitals often don’t charge a fee to send your information directly to another doctor or institution.  If doctor ‘A’ sends a part of your medical file to doctor ‘B’, be sure to ask doctor ‘B’ for a copy of it at your next appointment.

3. Sign up for online charting. Some medical institutions are beginning to offer password protected online systems that allow patients to view test results and communicate with their doctors. Ask your oncologist, or other doc, if they have such a system and if so, sign up for it and continually request that lab results and notes be posted there.  Print from this system new records as they are posted and include them in your personal hardcopy files.

4. Get help from a social worker or patient advocate. These people know the ins and outs of the hospital.  Ask about financial assistance for medical records copying or see if they have the ability to waive your fees.  Remind them that you are a young adult cancer patient and describe the financial burdens your care imposes.

5. Offer to pay a reduced amount. As with asking for a reduction in the cost of your medical bill, care providers are more inclined to say ‘yes’ if you make a good will offer to pay some amount, even if it is only a fraction of the charge.

6. Understand the law. Many states set legal limits on medical copying fees. Google the name of your state and “medical records copying fees” to see if your state has such laws.  Be sure the information you retrieve is from an official state government website.  If you are being charged beyond what the law allows, politely explain this to your doc or hospital, and show them a print out of the law.  If needed, raise the issue with an administrator higher in the chain of command.  Calmly threatening to call your State Attorney General’s office is a last resort that often yields action.

How much have you been charged for medical records?  Have you found ways to work around the costs?

For more information on how to work the system and save money, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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