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.

Most people are psyched to play match maker between cancer patients, thinking if they know someone else with your kind of cancer, of course you’ll hit it off and become friends.  This is when phone numbers are given and the match making begins.

In Everything Changes, I wrote: “In my first six months of living with cancer, I received enough phone numbers of friends of friends with cancer to fill a small Rolodex. Picking up the phone and calling a complete stranger, twice my age, with cancer was just as appealing to me as calling the nice, single Jewish boy whose mother had met my mother at synagogue. It wasn’t going to happen.”

Sure, now I love talking to strangers about cancer, but I waited to do it when the time was right for me, and with patients whose values interested me.  Just because two people have cancer does not mean they have compatible values around medicine, treatment, or emotional styles and religious ways of coping.  Plus, I want to feel connected to the person about something other than cancer: I’ve met plenty of cancer patients who are just as crazy or unappealing as anyone else in the general public.  It’s all very much like internet dating.

I like Imerman Angels, an organization that matches “fighters” with “survivors”. They’re great yentas, taking into account things like if you’re a college student, parent, young adult, and the stage of your disease.  And, it can be nice to find someone to talk to because you want to, not because your very well meaning neighbor thinks you need it.

I love it when my phone number is given out to newly diagnosed patients.  I hope they will call, but I never expect them to.  I totally get that most people aren’t into the dial-a-stranger routine.

Did people try to do cancer match making with you? How did it go?  Do you like having direct contact with other patients or prefer more anonymous  communication, like reading blogs? What’s match making like if you have a rare form of cancer?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about my cancer conversations with complete strangers.

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.

During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

I spent my first month of cancer trying to weasel my way onto COBRA. (Check out the podcast from my interview on yesterday’s Fresh Air with Terry Gross, where I talk about this and other young adult cancer issues.) One of my tactics was pulling the cancer card with COBRA phone representatives: “I’m 27, I have cancer and no insurance, pity me.” It was life or death and I was shameless.

Pulling the cancer card so early on in my diagnosis initiated me into the world of asking for help from others. And I got pretty good at it. But, most other patients I interviewed in Everything Changes told me that asking for help crushed their pride and amplified their lack of independence. Listening to these other patients, I started feeling guilty over not feeling shameful about asking for help.  Had I spent my whole life as a louse in disguise? Was cancer the ultimate chance for me to be waited on while I ate bon-bons?

Hardly. When I was diagnosed I lived in an isolated studio apartment in a rough neighborhood with no amenities. My laundry was down three steep flights of stairs in a garage that looked like a crime scene from Law and Order. There were no quick trips to the grocery store, no roommates, partner, or next door neighbor asking to pick up prescriptions for me. The only way I could get my needs met was by asking people to go out of their way to help me. There was a familiarity to it all: I had spent my childhood watching my grandmothers shuttle chicken soup across town to whoever was in need.

My second radiation treatment was the height of my helplessness. I was so weak I asked a guy friend to walk me to the bathroom. He had to prop me up on the toilet as I peed. While my extreme illness sucked, there was a small benefit to being humbled in this way: it reminded me that I’m human and I cannot make it alone.

What is it like for you to ask for help from others? Have you ever refused to ask when you really needed it? How do you handle it when people cop out, say no, or don’t show?

For practical resources on how to build and manage a your support system, check out 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.

Here’s a great question I got from a reader living with lupus:

Dear Kairol,
A number of people are giving me well meaning but downright useless and unsolicited advice about my illness and how I should handle it - diet suggestions, names of new doctors, and how to manage my illness in the workplace.    It upsets me to the point that I’m sometimes in tears afterwards.   They are trying to help but not with what I need the most: grocery shopping, cooking or sheltering me from their germs.  How do I handle this?
Anon Me Again.

Dear Anon Me Again,
When we’re sick people feel helpless and they grasp at advice to try and make us feel better. Here are some ways to respond:

Heart to heart. If it’s coming from a valued friend, have a heart to heart talk.  Use good therapy talk like “I” statements to describe how you feel, and remind them how much you value their friendship.  Tell them how hard your disease is physically and emotionally, how personal your healthcare choices are, and how their advice makes you feel.  They may not know their comments have made you cry and if they love you, they’ll care.   Talk about the specific kinds of help you really need and how much their help would mean to you.

Elevator lines. If it’s coming from an acquaintance in casual conversation, prepare a practiced response that you say in a positive tone of voice, and then redirect the conversation to another topic. Such as: “Oh, wait – I know what you are going to say, but I actually have a great diet that works well for me.  Thanks for the idea, but I’m really cool in that department.”  Or, “Wait, I know you have some good advice for me, but I am on information overload about my disease, and I need to take an official break from thinking it.  But thanks anyway.” The more you do this the easier it becomes, and it’s very empowering.

The drama reduction program. I write about the DRP in my book Everything Changes and how great it was to rid my life of dramatic people.  Who are the people dishing out this advice?  Are they pushy, dramatic, tiresome, or bothersome in general?  If so, limit your contact or give them the axe.  Sound harsh?  As a young adult cancer patient, I only have so much energy to go around. I’m picky about who I give it to.

What is the most irritating unsolicited advice you have been given?  How do you handle situations like these?  Are you ever guilty of doing the same to others?  (Hard as I try, I know I am from time to time.)

For more details about my utterly liberating Drama Reduction Program, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Last night was Shannon’s office party.  (Fantastic blue cheese, good shrimp.)  One of his co-workers gave me a seriously long hug, clutched my arm, and looked deeply into my eyes. “How are you?,” she asked.  “I’m great I replied.”  “No.  REALLY.  How are you feeeeeling?,” she asked.

Some people who know that I’m a young adult living with incurable cancer expect me to feel like crap or be in misery. And when I’m not I get the ‘you’re a heroic trooper’ comments, the puppy-dog-eyes look, or the ‘it’s okay, I get it, you can be honest with me’ statement of disbelief over my feelings of wellness.  It’s maddening.

If me feeling great isn’t good enough,I wish they ask: ‘Do you feel the physical impact of cancer on a daily basis?’  I love blunt and upfront communication, and think this is what they are trying to get at.  I would reply: ‘I can’t feel the tumors and I’m not on treatment. I’ve gotten used to the side effects from my meds.  The hardest part is often the mental trip of cancer, but I’m really doing great right now.’

That kind of sounds like a kick ass reply, huh?  Maybe it should just be my response when someone asks me the overly tender ‘How are you doing’ question.  Though I wish I could get away with “I’m great, how are you?” just like everybody else.

As much as these pitying interactions really piss me off, I see a flip side.  Today the New York Times has a section on the voices of lupus.  After listening to people talk about this rather mysterious and unknown disease,  I see I’m lucky to have a disease with good name recognition that others take seriously.  Prior to my cancer diagnosis, my doctors suspected lupus. If I were a lupus patient, I might look great, feel like crap, and nobody would even bother to recognize my disease or pain.

Do people ever ask you how you are feeeeeling in a way that is different from how they talk to someone who is not ill?  How do you respond?  Do you appreciate the recognition and attention, or do you wish they would approach you as they approach others?

Read more about illness and social interactions (both victorious and defeating) in 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?