Everything Changes - The Guide to Young Adult Cancer

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.

Kim, a thyroid cancer patient, responded to my last week’s post about tips for handling family during illness:

“I think I might be the only person in the world who hasn’t told her own parents about her cancer diagnosis.  :P  From growing up, I know that my parents, esp my mom, would totally freak out if she ever found out about my thyroid cancer.  She would try to control every last food item that I put in my mouth and would probably try to come live with me (uninvited).  With my work and life, I couldn’t deal with any of that drama during and around my surgery, which was over 3 months ago.  Now, though, I wonder how long I can keep this secret from them.  Any thoughts or advice on breaking this type of news ‘after-the-fact’ would be appreciated!  Or, validation that it’s OK never to tell your own parents?!”

I know from writing my book, Everything Changes, that Kim  is not alone.  I’ve met and written about other people who chose to not tell their parents about cancer and other serious medical conditions, or who denied their parents’ help and presence during treatment.  There are rare circumstances where it may be a smart choice to wait to tell your parents.  If your parent is irrational, you have an extremely stressful relationship, or they have a mental illness that prevents them from being helpful, empathetic, or supportive, going through cancer care without your parents and with an organized set of stable, supportive friends might be the best choice for you.

Kim, I don’t know that there is a right way to tell your parents, but here are a few things that come to mind that could be helpful:  Do it in person if possible;  Don’t do it in public; Ask a stable family member (a cousin or aunt) to be present with you (or if you have to do it over the phone ask them to call your parents after you’ve spoken with them); Bring or send simple, written information to back up good, rehearsed definitions about your disease, your treatment path, and how it impacts your daily life;  Think about how to answer when they ask “Why didn’t you tell me?”  If it’s a good time to dive into the root of your relationship problems, then prepare for how to have that conversation.  Otherwise, prepare strong statements about how and why not telling was the most supportive thing for you.  And acknowledge that you understand why they might feel hurt by your choices; Alert your friends about the conversation so they are there afterwords to give you the love and support you deserve.

I’m curious what words of advice or support other people have for Kim.  Have any of you hidden your cancer from your parents or waited a long time to tell them?

Read more about how other young adult cancer patients handled relationships with their parents in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I’m glad to be celebrating Passover with my family and getting a reprieve from thinking about healthcare reform.  Waking up in my parents’ house got me thinking a lot about how much I love them and what it’s like dealing with family in general when you’re sick.

I’m going to brag: I’ve got the most close knit, loving, caring, nuclear and extended family I have ever seen outside of shows like Eight is Enough and the Waltons. Still, cancer put temporary stress on some of my family relationships.  I know scores of other young adult cancer patients who have dealt with family issues like: differing medical values, old feuds and hurt feelings rising to the surface, having someone by your side who loves you but is sometimes just a little too close, or handling completely dysfunctional parents or siblings in the midst of treatment.  Here are a few things that worked for me in navigating cancer and family matters:

1. Express how you are feeling and what you needed. This helps when your relatives are rational people (not everyone’s are!)

2. Don’t express to everyone how you are feeling and what you needed. Some relatives have made asinine comments to me and I let it go. You can pick your friends but not your relatives and I know when it’s futile to spend my limited energy trying to get someone to look outside of their bubble into my world. Emotional walls and superficial conversations are sometimes great devices. And remember, just because a family member offers to help you out doesn’t mean you have to accept it.

3. Arrange for alone time. I was damn grateful for the love and support I had, yet I knew I would go stir crazy without a little time to myself in my tiny studio apartment. If your family is from out of town, ask your friends to take them out to a movie or to dinner so you can get some space.  Chances are your family members need a break too.

4. Bring in outsiders. During my first treatment it was just me and my mom. The second time around we mixed it up with my aunt and dad coming out too.  It was great to have friends stop over to be with all of us and to have my Rabbi drop in too.  There was a lot of nervous energy flying around and we loved an outsider to come and divert our attention.

Has illness impacted your relationships with family members? What tips do you have to add to my list of how to manage family relationships during illness?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s  to learn how and why Seth successfully asked a sibling instead of his parents to come take care of him.

It’s frustrating and soul corroding when friends, family members, co-workers, even doctors shower you with stupid comments about your disease.    And it’s even worse to think of the perfect comeback three hours later when you are laying in bed.  Venting online with like minded patients about how we’d like to smack these people is all fine and dandy. But, I’m actually more interested in realistic responses that will make us feel better.

I’ve started trying to turn these situations around. Here’s an example: A friend recently said: “You gotta think positively and it will make your test results come out okay.”  I replied in a really nice tone: “I know, I hope everything is okay.  But did you know that studies show positive thinking doesn’t really impact cancer growth? I guess I usually just let myself feel nervous and then deal with the results when I get them.” She was surprised to learn this piece of information, became even more interested in what I was actually feeling and going through, and we had a cool conversation. So, here’s what I’ve learned to include in my comebacks.  I know this all may sounds a bit therapisty - so forgive me:

I get friendly instead of confrontational. Being a smart-ass only shuts the door. I think of my response as an invitation to more conversation, rather than a statement that will put someone in their place.

I try to teach them one thing about my life, my illness, or my reality. Not a lecture, but just one little nugget of info that helps them better understand what my life is actually like.

I start by saying something simple like: “Actually, that’s interesting I have the opposite experience…”

Does this work with everyone?  No.  There are some people I don’t have the energy or desire to deal with.  With these folks, I just note in my head, “This person’s so wacko I don’t really care what they have to say.”

What are there smartest, most useful responses that you’ve said (or could have said) to people’s stupid comments?  Am I full of it or do you think my ideas are actually applicable to situations you find yourself in?

Want to learn more especially about how to communicate with your docs?  Read 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.

This post is much longer than usual but is so raw, eloquent, and well worth taking the time to read.  Leslie Rott is a 23 year-old lupus patient and grad student at University of Michigan.  She’s the creator of Getting Closer To Myself blog. Take it away Leslie:

I have been struggling for a while, feeling like I needed to write a post about sex/relationships, but it never felt like the right time, until I read the book Everything Changes in which Kairol writes: “In my first two years of living with cancer, the number of men I slept with had more than doubled”.

When I read this sentence, I stopped cold. This line got to me because it is me – the same thing happened to me in my first two years of living with lupus. Well, if you go from zero sexual partners in 23 years, to one or two in just a few months, it might not seem like much, but for a straight-laced person like me, it caused quite a stir.

The way the people around me were acting, you would have thought I had murdered someone. Maybe murdered myself. But this has nothing to do with self-respect. Because the truth is, I was being judged on terms that no longer applied to me. Yes, the “old” Leslie, the “healthy” Leslie, would probably have never done any of that. But it was about feeling good in a single moment, one moment without pain was worth far more than the potential consequences of my actions. Feeling wanted, needed, loved (doubtful), and even “normal,” was something that I yearned for, and that was the only place I found it. To be held, to not feel alone, to feel like someone else in the world other than myself and my immediate family had a stake in all this, that was what it was about.

Illness has, at times, clouded my judgment and filled me with a sense of urgency that I never had before. Because the fact is, illness is a major head-trip. If you’re not fully secure in who you are as a person, there’s no telling what will happen.

Kairol quotes Wafa’a, a young adult cancer patient: “Cancer makes you feel really alone, and you just want to be held and feel loved. Or maybe it is a coincidence, and I’d just really want those things right now even without cancer, and it’s just part of being twenty-four. I want to matter to someone else. I want to feel like someone is thinking about me. Since being sick, I’m just looking for a bit of stability, and I think maybe having someone else to love me is it. You can’t control life so maybe you can just date and control that, but you can’t control that either.”

When I first got really sick and no one could figure out what was wrong with me, I didn’t tell anyone, but the biggest thing I was concerned about was that I was going to die a virgin. And somehow, in my mind, this singular event seemed insurmountable.

I can only imagine the reaction had I ever expressed this fear out loud. It would probably have gone over as well as telling my rheumatologist that I didn’t want to be on prednisone because it made me fat and moody. A 40-something man certainly can’t understand where a 20-something woman is coming from in these terms – to him it makes me seem shallow, ridiculous, and heaven forbid, noncompliant (probably the worst thing in the world a patient can be labeled). Because apparently, when you are sick, you aren’t supposed to think about “normal” person things. You’re supposed to transcend all that, and see that life as a mere mortal is fleeting and fragile, not something that should be squandered away worrying about the things you haven’t accomplished. Just like I didn’t think anyone around me would understand that the fear of death was overshadowed by the fear of not having lived. So, when, in a moment of no thought, I decided to end my relationship with celibacy and make sure that dying a virgin wasn’t a possibility, it’s no wonder that the people in my life, the healthy people, didn’t understand the urgency and all of the emotional work that went with it. It wasn’t about sex. It was about what came with it, what came after, and unfortunately, what was very short-lived.

I used to be the one that people envied for having my shit together. Now I’m the one fighting for control of just about everything. I don’t feel like the envied one anymore. And if the people in my life haven’t realized that this isn’t about morals or character, that it isn’t about being that kind of girl, then they can get the hell out. Because if you haven’t been sick, I don’t really think it’s your place to judge.

I think when healthy people hear about a sick person engaging in behavior uncharacteristic for them, the first thing that comes to mind is risk taking. Oh, that person is sick or dying, they feel like they have nothing left to lose. But it’s not about taking risks. It’s about living, and attempting to feel like you matter, like life is worth fighting for.

It wasn’t until I turned to a complete stranger for support that anyone in my life realized that I needed anything at all. And this is my own doing, because I was scared and confused, didn’t know what to ask for, and didn’t really want to have to ask for anything at all. But the truly ironic part is that it wasn’t until this incident that anyone in my life realized how unhappy, how depressed, how scared, and how alone I had felt for nearly two years, and how truly nonexistent my coping had become.

There were a few people in my life who applauded these efforts, who said it was about damn time. But what I really needed, was something that I rarely got, which I think could only come from other sick people, is to understand that it wasn’t about sex. It was about having lived my life a certain way for 23 years, to get burned by illness, and to be left feeling like I needed to refigure things out. So I started with the new, with the untouched experiences in my old life that had hung over my head for years, thinking maybe that’s what was missing. And what I realized, is that what was really missing was a part of myself that no one, other than myself, could give me.

Kairol talks about what it’s like to find love in the face of cancer. Finding love is hard enough. Finding love in the face of illness is definitely something to envy and hold dear, if and when you find it.

Another patient in Everything Changes says: “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.”

Kairol herself, says: “[T]he most remarkable cancer patients are not those who are climbing mountains but those who have found a way to climb into bed at night and be honest with themselves about staring fear in the face”.

More than anything, “Everything Changes” made me realize that I have yet to really grieve about my illnesses. I tried to stay strong for everyone else around me that I forgot that maybe being strong for myself means not being strong at all. Maybe some of us never come to terms with illness. Maybe we remain forever wondering why we picked the short straw, or why our genetic makeup failed us. What I realize now is that anger – at ourselves, at G-d, at the world – is a necessary part of this process.

Kairol writes “[If] a broken heart caused cancer [or lupus, or any other disease] […]”, then all my friends would have understood my situation far better than they have. If illness could be explained in terms that even healthy people could really, deeply, intimately understand, well, maybe none of this would have happened in the first place. But I am attempting to live with no regrets, and to not beat myself up for the mistakes, er, I mean choices, I have made.

Are you as blown away by Leslie as I am?  What parts of her writing could you relate to?  Has your intimate life changed dramatically since being diagnosed with an illness?

For practical tips and resources on having sex with illness read 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?

Many survivors my book marked the end of treatment with a trip. Some expensive, most on a shoe-string. Some foreign, others just a refreshing get away to see family or friends. If your thinking of adventure travel, Defy Adventures, a new adventure travel organization for young adult cancer patients. I recently interviewed Micheal Lepage, the founder.

Did you travel prior to having cancer?
No. Beating cancer spurred me to see the world. I have since backpacked Europe, trekked dormant volcanoes in New Zealand, camped in the Grand Canyon, and climbed to the top of the Cristo in Rio, where I asked my wife to marry me.

What were you hardest and most hopeful memories of treatment?
I’d just finished my 12 chemo treatments. Excited to return to school, finish my last semester and graduate, I dragged my parents, siblings, and girlfriend to my appointment. The news was the exact opposite of what I expected; I hadn’t responded well and I needed another four treatments. I felt crushed, embarrassed, and annihilated.  My most hopeful memory was a moment of clarity while sitting quietly in nature. I had one more treatment to go and felt sure that my cancer was gone and it was over. My next scan was blank and I was right.

What advice do you have for survivors after treatment?
Take it ridiculously slow. Here’s my formula; Take the total months of cancer treatments, divide it in half, and add 3 months. Plan for that much time to get back on your feet. If you get there sooner, great! But don’t push for it.

Talk about your new organization Defy Adventures.
We help young adult survivors reclaim their lives after cancer. We whisk them off to a remote part of the world to climb a serious mountain in Peru or survive in the jungle. Our expeditions create community, build self-confidence, inspire, and are a total blast.

So, have you taken any memorable trips after your cancer care? Were did you go? Did you get the O.K. from your doc before you traveled? Any tips for survivors wanting an inexpensive vacation? After treatment my friend Lisa Friedman and I went on a shoe-string trip to Costa Rica where we stayed in little beach villages with almost no tourists.

Disclaimer: I live under a rock, don’t own a TV, and have never read a print copy of USA Today.  I’m pretty okay with all three statements.

Kudos to Grey’s Anatomy for: showing young adult cancer along with family and fertility issues, illustrating melanoma as a serious deadly disease, and revealing that advanced cancers do not have a quick fix solutions but involve super challenging choices between two evils with no guarantee for favorable results… if you are lucky.

But, damn Grey’s for not getting it right.  An article in USA Today says Izzie’s options not accurate: surgery, with memory loss as a side effect, or interleukin-2.  American Cancer Society confirmed that IL-2 is never recommended for melanoma brain mets because it can cause bleeding and strokes.

Grey’s consults with MDs, so why can’t they get it right?  Are they just dialing up the drama on the storyline?  I’ve been living with cancer for nine years and there is plenty of drama to go around with my story just from the very accurate and real life details.

Does Grey’s do more harm than good with this storyline?  Good: It spurs discussion and awareness.  This article highlights one of my all time favorite orgs, Planet Cancer, and quotes JT, one of the most amazing people I’ve ever met.

But consider this quote from Otis Brawley, the chief medical officer at ACS: “Many people view the cancer problem as much simpler than it actually is. That’s because they get their medical information from television shows. But television shows are by and large fictional, and much of the medical information there is also going to be fictional.”

Do you watch Grey’s?  Does the storyline do more harm than good?  What does it say that instead of covering healthcare policy, a major American newspaper is covering the TV coverage of a fictional cancer patient?  And have I just lowered my standards by blogging about a USA Today article?