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

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.

I lived a deprived childhood.  I never was part of a science fair.  Seems like everyone else I know had science fairs… maybe my school was just too cheap.

I got a chance to make up for it last night as an author at a Chicago literary fair.  The challenge was to make science fair-like projects out of our book.  (Sweet PR change of pace from my usual writing articles and planning speeches.)

I took quotes from my book Everything Changes, and wrote them on little paper doors that you could life up and read about the cancer patient who said them.   For example:

“I’d ask my doctor a question, and he’d say, ‘We’ll cross that bridge when we come to it,’ and I’m like, ‘No, f*** you. This is my body, I’ll cross it right now.’”

Amilca Mouton Fuentes, 26, leukemia.  Lives in her parent’s house with her husband, 15 month old son, and her siblibings.  Seven adults and one bathroom.
Loves Krispy Kremes, and is devoted follower of Ama, an Indian spiritual leader.

“I believe that there are times when it is appropriate to receive help, just as there are times when it is appropriate to give help. If you ever refuse to receive, you are unnecessarily putting a barrier between yourself and the love of others. It’s normal for humans to live in communities where there is love and relationship, and receiving is just as important a part of being in that community as giving is.”

Richard Acker, 36, colon cancer.  Dad, husband, environmental lawyer.  Evangelical Christian dedicated to preserving God’s creations.

I had eight quotes in total that helped break stereotypes of cancer patients, and taught a bit about some of our attitudes and lives.  But I still feel like I ultimately failed in that I couldn’t come up with a connection between young adult cancer and an exploding baking soda and vinegar volcano.

If you had unlimited time and money to create an outlandish, over the top, large scale science fair project about your life as a young adult patient, and it were going to be show at a place like…let’s say ASCO, what would you make?

Read more about Amilca and Richard in Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

I don’t have kids but got to peer in the lives of parents with cancer when I was doing interviews for my book Everything Changes. I believe that cancer is a totally different disease for people who are parents and think there should be a new staging system to reflect this monumental difference: Cancer Stages I - IV NK (no kids) and Stages I - IV P (parent).

Jen Singer is the creator of MommaSaid.net, the moderator of the Parenting with Cancer boards at Planet Cancer, and the author of four parenting books including Stop Second Guessing Yourself—The Toddler Years (HCI 2009).  I asked her to write a guest post about life during treatment as a mom of three.  Take it away Jen:

“When I found my son’s swim goggles in our mailbox, I took it as a sign that I was no longer in charge. How could I be? That summer, I was undergoing chemotherapy for stage 3 non Hodgkin’s lymphoma (and, oh yeah, my house was undergoing renovations…). So I didn’t have the energy to drive my kids to swim team practice. In fact, I missed most of their swim meets and much of June, which I spent in the hospital, sharing a room with an 84 year-old leukemia patient, who was dying. I missed being the kind of hands-on mom I’d always been. But most of all, I missed my kids.

I learned a lot of things that summer, like how to tie a headscarf and what time The Daily Show repeats come on during the day. But most of all, I learned how to let go. It was the best thing for me, and for my kids.

While some nice folks took it upon themselves to turn my mailbox into a Lost and Found, my neighbor, Susan, organized the community to cook for us three times a week. Another neighbor, Kim, set up a schedule for friends to carpool my kids to various activities and playdates, which she arranged for me. My job was simply to sit on the couch and wave good-bye – if I was even awake. Everything else was pretty much handled by everyone but me.

The sicker I felt, the easier it was to let friends and family take care of my kids. I’d much rather that my children spend the afternoon swimming with their buddies than watching me doze off or witnessing me drop to the floor in excruciating pain, a side effect of the white blood cell-boosting shots I received after each chemo session.

But when school started in the fall, not being in charge was harder for us all to take. I had to ask my husband to fill out the first-day paperwork, because I was simply too exhausted. I brought my mother and a teen from down the street to help me coach a soccer game, because the radiation treatments had weakened my voice. And when I went to Back-to-School night, several neighbors didn’t even recognize me and my puffy-from-steroids, eyelash-less face.

For the first school year ever, I wasn’t Jen Singer, class mom. I was Jen Singer, cancer patient. And that was hard on all of us, especially my kids.

But once my treatments ended and my energy (and my hair) began a glorious return, I started to pick up where I’d left off. By the time I found out I was in remission (and still am), I was slowly becoming the hands-on mom I used to be.

Now two years later, I am in charge of the kids – and the swim goggles – again. But I’ll never forget the generosity our neighbors extended to me the summer that I had cancer. I may have lost the ability to parent the way I wanted to, but I found something so much more important in the mailbox and beyond.”

When you were parenting with cancer, what was it like to let go of control of the day to day life of raising your kids?  If you are post-treatment, or in remission, do you feel like having had cancer has changed the way you parent?

For more stories, advice, and resources on parenting with cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My healthcare motto as of late is quit bitching and start thinking.  Yes, the health care system sucks and we need to vent about it big time.  But, we also need to learn how the system and its players work so we can use them to our advantage.  We cannot do this if we think patients are never to blame.

In my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, I write a lot about how I and other young patients have wrangled the system, fought like hell, and got the care we needed. You can’t win these battles by only thinking like a patient; you sometimes have to think like a doctor.

Last week, Kevin MD posted about patients who annoy their doctors.  A commenter complained about cancer lit that suggests patients bring a friend or family member to appointments because it turns the appointment into “a side show.”  Instead of getting in a defensive-patient tizzy, brewing up an us patients vs. the rest of the world rivalry, I thought I’d try to see if there was value in the comment.

I want my doc to absorb my medical history, perform a good hands on exam, and answer my questions, all in 10 minutes. So maybe the maxim shouldn’t be ‘bring a friend to appointments’ but bring a friend who is medically astute and a skilled communicator. Is it really helpful to have a flighty chatterbox with me in my appointment, who will distract and annoy my doc?  I think not.

Tonight on the Stupid Cancer Show, Matthew Zachary and I will be interviewing Wendy Harpham MD, a mom of three and general practitioner diagnosed with cancer at 36.  Her great new book, 10 Seconds to Care: Help and Hope for Busy Clinicians, helped me better understand the pressure cooker in which my docs work and the ways in which I can actually make their jobs easier.  Considering that their job is to save my life, I’d like to help them all I can.

Are there times when empathizing with your docs works to your advantage?  Do you ever read doctor blogs?  Have you ever brought someone to an appointment who actually made the process more complicated rather than easier?

For more stories about how to be an effective, proactive patient, check out my book Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s, available wherever books are sold.

When I’m feeling sick, scared, or overwhelmed by my health, I don’t want friends or family bullshitting me and telling me that everything is going to be fine. It only makes me feel worse.  In fact it makes me want to smack them.

I got a facebook message today from the wife of a young adult cancer patient whose husband is going through possible recurrence.  She said all she can do to support him is tell him she loves him and is there for him. I think she is doing the absolute right thing by being simple, honest, and real.

My friend Lori Hope wrote a fantastic and well researched book called Help Me Live: 20 Things People with Cancer Want You To Know. On the list is “Hearing platitudes or what’s good about cancer can trivialize my feelings.” Kudos to that sentiment.

I totally understand the temptation to want to make things better for someone else who is going through the ringer.  I experience this anytime someone I love is down and out.  Of course we want to fix it.  But let’s be real.  Shannon, Lisa Friedman, and my mom and dad are not going to take my cancer away.  (I’ve hired good doctors to try to do that instead.)   What they give me and what I want is simple, honest support.  They tell me they love me and understand why I’m afraid.

A bit of pink wine and really good escapist DVDs can make a huge difference in getting me through the hard times too. (Six seasons of The Wire got me through this past February and March – thank you Avon and Stringer Bell). But best of all is surrounding myself with people who can be honest with me in the face of fear.

When you are having a hard time, what do you most want to hear? Are you comforted or agitated by someone telling you that things will be fine? Do you spend more or less time around some people because of how they respond to you when you are having a hard time?

I cannot imagine anything harder than being a parent and watching your kid have cancer. My mom has done it for nine years. Holy smokes. She is amazing and since it is Mother’s Day I thought I’d tell you why:

1. She lets me call her anytime of the night to cry or just talk on the phone.

2. She is a great listener. She gives opinions but is never judgmental.

3. She always lets me know she is a plane ride away, and she has hopped on plenty of planes when I need her. (Thank you Southwest for your cheapo Pittsburgh to Midway tickets!)

4. She runs into her local Barnes and Nobel to make sure they have enough copies of Everything Changes in stock, stops in at cancer centers to talk up my book to social workers, and she set up a table at her local Curves for people to buy copies of my book.

5. She is feisty while still being lady like. If someone spouts stupid cancer comments to her (like the time someone at synagogue said in reference to my cancer “God does not give you anything you cannot handle.”) she knows how to put them in their place while maintaining her dignity.

6. She has really valuable advice. “Honey goes farther than vinegar.” This helps when I am dealing with hospital administrators who I want to strangle.

7. She is funny. I have a horrible mouth and swear all the time,  so every once in a while she calls me her “fucking daughter” just to make fun of me.

8. She is a good, good person. Many Catholics have suggested that she be canonized as the first Jewish saint. She is always giving of herself to help people in need. She does it without ego, out of pure compassion and love.

Happy Mother’s Day Nancy Rosenthal!

What is your mom like? What are the incredible things your mom does for you?

As young adult cancer survivors we big time need to kvetch about our friends who say stupid things to us (like: “In a way you are lucky you have cancer because now you don’t have to worry about whether you will getting it.”) But do we also spend enough time praising and gushing about our friends who totally understand us?

On Monday, Tara Parker-Pope referred to an article from the Journal of Clinical Oncology March 2006, which studied 3,000 nurses with breast cancer and showed: “Women without close relatives, friends, or living children had elevated risks of breast cancer mortality compared with those with the most social ties…. Neither participation in religious or community activities nor having a confidant was related to outcomes.”

When I was diagnosed, I sat on my bed and told my friend Nicole.  She shed all pretense and sat and cried with me.  It was the best response to my cancer I ever had.

During my treatment, Rachel, a casual acquaintance, adamantly wanted to help me with my mounting housework. A busy woman, she multitasked and on a first date brought the guy with her to my apartment to wash dishes. She threw a dishtowel at him and told him to dry.  They were not together long,  but she and are now close friends.

My friend Heather is amazing. Once when I was having a weird cancer period, she let me show her my used pad so we could talk about the color of the blood. Friends don’t get better than that.

Lifting loads of laundry to keep our staples intact, scrutinizing doctors for us, letting us cry into the phone so we can sleep better at night and fight our fatigue. This is what good friends do. I don’t know if in every instance friends help reduce our mortality rate, but the good ones sure as hell can improve our quality of life.

What great things have your friends done for you during an illness? Who has made you feel less lonely, more loved? (Do I sound like Delilah yet?) Who is by your side when your health is grizzly and you are freaking out? Has your support ever come from unlikely friends, or people who you weren’t that close to before cancer?

Vote Now: Should I Delete Spaz as A Friend on Facebook?

I’m not trying to go 6th grade on us; I think this is a great topic up for grabs, with a friend who never minds public exposure or controversy (or at least he didn’t 20 years ago; maybe we’ve changed since high school!)

Tuesday night I posted on facebook “Kairol Rosenthal is debating with Shannon about how much money doctors should make.”

Spaz commented on my wall – he’s a high school friend, with whom I used to watch John Hughes movies, attend peace rallies, and kiss in the park.

Spaz wrote “… You used to be into music, movies, activism and all sorts of other things. Is medical stuff and malignant masses really all you are into now? … It’s like people are born again and only talk about Jesus. If this is annoying or rude, delete me as a friend and I’ll understand. Otherwise. Weren’t you married recently?”

Mr. Malignant
Comments went up on my wall defending me, calling him malignant. But Spaz raised a good question that others wouldn’t dare to. Here’s my reply:

Medicine is the central issue of our time; talking about it is activism. Health care impacts the financial status, productivity level, and quality of life of most Americans.

In the last 6 months, I haven’t touched the Arts section of the Times; I used to drink it in. Instead I read about doctors’ pay, pre-existing condition regulations, and a proposal to split FDA in two. These issues profoundly impact on my life, and yours too Spaz.

I get the born again analogy, and could reply, “I have no choice but to talk and think about healthcare. I’ve got cancer.” But that’s bullshit. I have a choice about where my mind goes, and lately I’ve been questioning the direction. Have I had a day in the last three months where I didn’t ruminate on health care? No.

My Bagels and Pajamas
Patients across the country call and email me daily about insurance, getting second opinions, financial resources, and cancer. I love that I, and my book, can help people.

Some days it’s taxing though to be all about cancer, like today when I am just sad and pissed off at the insidious, malignant tumors in my neck. I tell myself to stop the health care chatter: take more walks, watch more ballet on You Tube, write facebook updates about my breakfast or that I’m still in my PJ’s at 1:57 PM.

But who gives a shit about my bagel or PJ’s? Perhaps nobody cares about how much doctors get paid either, but I think we should. We can’t complain about health care if we aren’t educating ourselves and to be part of the solution.

So yes, Spaz, I’m married to Shannon Fisk, an environmental attorney for NRDC. We don’t want kids, love our dog, are total geeks and night owls, and live in Chicago, but wouldn’t mind moving to New York. Last night we climbed into bed, debating if convicted murderers should be allowed to study and practice medicine after serving their sentence. Conversations like this are my passion, just like music, photography, or gardening is for others. I’m damn lucky that I’ve become a healthcare author, and that something I love (and loathe) so much has become my profession.

How would you respond to Spaz? Would you delete him or not? Do you think about your health more than you would like to? Do you discuss health care issues with friends who aren’t young adult cancer survivors?

Shopping List
Are you seeing double from treatment, immobile from surgery, or too fatigued to drive to the store for groceries but tired of asking your friends for favors? Learn how to make your food last longer so that you can make fewer trips to the grocery store. M. O’Connor, a commenter on a New York Times foodie blog offers the following tips, which I have adapted slightly.

1. Buy meat in quantity and pop into the freezer upon unpacking

2. Lettuce: Buy heads not bags, store with bottom end in a bit of water

3. Keep bags of frozen vegetables on hand (healthier than canned)

4. Rice, most dried beans, and pastas keep for ages on the shelf

5. Dried fruits have long shelf-lives, as do most nuts

6. Potatoes, onions, and apples last a while, store in a cool, dry place

7. Wrap hard cheeses in waxed paper followed by aluminum foil

8. Eggs last far longer than the date on the box,purchase many cartons
are a time. Read more about it.

9. Use canned or powdered milk for baking; eat oatmeal for breakfast

10. Keep butter and bread in the freezer, defrosting as needed

Pitfalls
This list contains some pitfalls for young adult cancer patients: you have to be able to afford to buy in quantity, have a large enough freezer, and if you are trying to eat organic or preservative free, your food will perish much faster than conventional food.

Have you needed others to do your groceries while you were sick? What made it go smoothly or not? What is the nastiest thing someone bought you when they did your shopping? (Mine was cozy shack pudding, which I ended up liking!) Have you ever gone without food because you couldn’t make it to the store?