Everything Changes - The Guide to Young Adult Cancer

My hospital is around the corner from Gucci, Coach, and the Apple Store.  (Swank huh?)  I’m sure sneaky shoppers try to park in the hospital garage at patient rates.  It’s the front desk staff’s job to make sure they don’t.

A few years back, I had a particularly horrible post-surgery appointment: The doctor was great but the news was bad.  It took three hours and involved an unexpected and painful biopsy of newly found tumors.  The doc explained why the samples looked extremely suspicious of cancerous.

Shannon and I were crushed, our minds fried, our bodies exhausted.  We waited in line for the elevators, made it down to the lobby, and waited in another line for parking validation.  “I can’t do your ticket.  I need to see that you were at a doctor’s office.  Go upstairs and get them to initial a blue slip,” the front desk woman said while multitasking on her cell phone.

We know the parking routine well, but we totally spaced this time.  I pointed to my fresh, turtleneck-sized bandage. “Ms., I just had a surgical procedure.  I’m a cancer patient in a lot of pain and need my husband to get me home fast.  I don’t think I can make it back upstairs.  Can you call my doctor’s office for verification?”   No.  She would not budge.

As Shannon began the trek back to the doctor’s office, I told her to get a job where compassion is not needed, where she doesn’t have to think too hard or interact with cancer patients.  I dropped plenty of F-bombs into my statement.

Yesterday was Yom Kippur, the Jewish holiday where you atone and ask for forgiveness. This incident came to mind, even though it was a few years ago.

Living with an incurable illness can be infuriating. My mother always says honey goes farther than vinegar. And she’s right.  But I’m human and have my breaking points.  Especially when it comes to inefficiency or stupidity in the medical system. The perfect, ethical, Girl Scout side of me says two wrongs don’t make a right and there are appropriate ways to direct my anger.  But the realistic side of me says cancer sucks, and if you are going to act like a total idiot to me on a really bad day, I might act like one back and not feel too badly about it.

Have you ever gone off on a medical worker?  Did you feel justified?  Did you ever apologize?  Do you think I should have apologized?

Read more outrageous exchanges between cancer patients and medical staff in 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.

“If I had a message to the men of the world who have rejected women with cancer it would be f*** you! No. You’re an idiot. No you’re just selfish. It’s so pathetic- do these men not think that they could get sick some day too? It is just bad karma.”

These words spouted from Melissa Sorenson’s mouth, to my tape recorder, to the pages of my book Everything Changes. I high-five her all the way. But it’s not just a message to men. Plenty of women have rejected guys with cancer too.

Diagnosed with rectal cancer at 41, James Buchanan writes about cancer and dating. Gas eruptions on a coffee date; a woman who was fine with cancer but not his colostomy bag; and finally Lesleigh, who was up for both. This is a great description of their first time in bed:

“We undressed and climbed into her bed, but cancer had one more ‘f*** you’ in store for me. Hidden beneath the pain of the radiation and surgery and the sickness of chemo was damage to the nerves necessary to achieve an erection. My body and mind wanted her frantically; my soul silently screamed in embarrassment and anguish.

As I would learn later, these difficulties were an on-again-off-again problem that could be cured with a pill when necessary. But for that night, I held her in quiet sorrow. I was convinced that my life would never be whole again, that this relationship was nothing more than a promising meal about to be taken away from a starving man.

‘I’m sorry,’ I said. ‘Is it me?,’ she asked. ‘No, not at all, never,’ I replied and then feebly described how my treatment had been so focused on this one area of my body that it was inevitable it would have obliterated the anatomy required to make love to her. Lesleigh rested quietly next me, naked, beautiful and sexy, and my newfound impotence burned hotter than anything I had ever felt in my life. Then she turned and kissed me. I wrapped my arms around her as she curled into my body and we lay together, naked and sad.

Lesleigh and I worked through my cancer and physical infirmities, and as we have progressed and fallen in love we have brought our kids together and established amongst all of this complexity a family based on a healthy and loving relationship. At no point have I doubted Lesleigh’s love for me nor my love for her.”

I love James’ story not just because he and Lesleigh got married in the end, but because it is such a good example of why great communication really matters.

I hear so many cancer dating horror stories. Do you have stories about people who are loving, accepting, communicative? What worked and didn’t work for you with cancer and dating?

Check out the sordid details of my dating life, including a very happy ending, in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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?

In the Young Caregivers section of my book Everything Changes, I write about a study that shows while cancer patients and caregivers both suffer from quality of life and mental health issues, patients have a greater sense of spiritual wellbeing and social integration than our caregiver counterparts. We tend to bounce back, and sometimes even benefit from the cancer experience, while caregivers are left alone to pick up the pieces.

Some say patients cannot help caregivers, I disagree. My husband Shannon should be canonized as a saint for his caregiving both in crisis moments and on a daily basis. It is easy to identify what he does for me, but I asked him what I do that makes his job easier. We came up with a list - it doesn’t just apply to partners, but any caregiver: parents, friends, siblings, roommates.

1. Make a break
Caregivers may feel guilty taking a break. Patients need to encourage and facilitate it when able. I email Shannon’s buddies suggesting they go out for Belgian beer. He usually won’t pick up the phone and make plans, but if his friends initiate, he goes and enjoys the time away.

2. Lean on others
Your caregiver can do a lot, but they cannot be your everything. Get support elsewhere. Sometimes when I’m crying at 3AM I pick up the phone and call my mom. Shannon is here for me too, but he is really glad to get a break and a good night sleep. Let others in.

3. Give internal updates
Be a good communicator. Let your caregiver know how you are feeling without being bratty or reactive. If my hormone therapy is messing with my head, I tell Shannon nicely that I’m on a hormonal roller coaster, I hope he can bear with me, and I apologize in advance should I become a bitch. If I’m scared about an upcoming test and don’t want to talk about it, I don’t just go silent. I tell him nicely that I’m scared and it is easier for me not to talk about it.

4. Listen to them
Find lulls when medical, administrative, and household chaos is not erupting and ask your caregiver how they are doing. Maybe they don’t want to burden you and feel more comfortable unloading with a friend, but at least give them the opportunity. (Warning: only initiate this kind of conversation if you feel secure, objective, and free of cancer patient guilt, otherwise you are opening Pandora’s box.)

5. Squeeze two fingers
Did you know that it is less bone crushing to squeeze someone’s pointer and middle fingers together instead of squeezing their whole hand? Think about that next time you grasp for your caregiver’s hand during an IV stick.

Do you believe that patients can be supportive of caregivers? What are some stories you’ve had about what works or doesn’t work in the patient-caregiver relationship? What other tips would you add to this list?