November 16, 2009

Is Being An Aggressive Patient Always Smart?

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Ever since I was a little kid, I’ve had a huge don’t mess with me attitude.  I’m a scrawny Jewish girl, but am quite in touch with my inner Rambo.  It’s no surprise to anyone who knows me that I am a really aggressive cancer patient. But lately I’ve been wondering if aggressive is always the smartest choice.

Sometimes I’m aggressive out of fear.  Living with cancer is damn scary.  It’s easy to want to pull out the big guns so I can feel forceful in fighting my disease.   My doc told me I could lower the dosage of my medication slightly.  Instead of embracing the prospect of diminished side effects, I want to stay at the highest dose possible.  It’s a bit of a “Thank you sir. May I have another?” attitude.  A hurts so good attitude.

But is my choice pro-active and aggressive or just misguided and stupid?  Harder and stronger isn’t always a guarantee of healthier.  Many women still choose to get mastectomies for peace of mind in circumstances where they are not medically necessary.  A family member chose to take a very strong chemo that was not medically necessary because it made her feel proactive.  But what does peace of mind mean if the science doesn’t really back it up?  Should we invest in comparative efficacy research when so often patients make emotionally based choices?

Taking high doses of my medication makes me feel like an aggressive patient.  But an aggressive patient is someone who questions, reads, looks at their illness from all angles, and makes smart decisions.  And sometimes the smartest decision is the smaller, quieter action.  Or even no action at all.

Under the guidance of my doc at Memorial Sloan Kettering, I’m doing a wait and watch approach.  I’m living with two active tumors in me instead of having more surgery.  Many people can’t run fast enough to the OR to have tumors removed.  For my case, aggressive surgery isn’t the smartest choice right now.  I’m doing a pretty good job of tempering my inner Rambo and sitting tight with my guns at bay.  You’d think if I can convince myself to wait and watch, I could also convince myself to ratchet down my medication.  It isn’t happening yet.  I still need a security blanket.  And for now, my higher dosage of medication is it.  Aggressive? Yes.  Smart? Not necessarily.

How do you define being an aggressive patient?  Have you ever become dependent on the hope that stronger, harsher medications or procedures will make you better even if the science isn’t there?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how Greg balanced smart and aggressive decision making.

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November 14, 2009

Does Your Caregiver Get A Break?

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I’m still living with cancer in me.  But it’s been years since my last treatment.  Now that treatment is farther in the past, my mom and I are able to talk about it more, especially about her caregiving role.  She flew across country, lived in my tiny apartment, and took care of me for weeks at a time.

A few months ago my mom said, “I wish your friends had called me up and asked to meet me to lunch.  Or taken me out to the movies.  You wanted your alone time each day.  I was in a new city and overwhelmed, I really didn’t know where to go.”

The desperation of her statement was a shocker.  My mom’s no shy country mouse.  Drop her in a new city with a street map and she’s taking public transit to parts of town I’ve never heard of.  But this was different.  Few things are more painful to a mom than seeing her kid critically ill.  She needed to flee our little infirmary and zone out in front of the big screen.  I was too absorbed with my own illness to even realize.

My mom is still a huge support to me.  But my husband Shannon has now taken over as my main caregiver.  It’s super stressful for us when we are waiting for test results or dealing with my treatment and care.  I shoot out emails to his friends when it gets close to high anxiety dates (scans, big doc appointments).  I ask them to take him out for beer.  (Belgian at the Hopleaf if possible.)  Is it my job as the patient to help take care of my caregiver?  In small ways, when I am physically able, I think it is.

If you’re a caregiver, what do you do to take care of yourself and get time away?  Is it hard to make time?  If you are a patient, do you think your caregiver spends enough time taking care of themselves?  Are you able to help them get some time away?

Read hard to find practical tips and resources for caregivers in Everything Changes: The Insider’s Guid to Cancer in Your 20s and 30s.

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November 12, 2009

What Quotes or Scriptures Help In Tough Times?

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When  I was 27 years old, I sat on a pleather exam table and had a doctor two years older than me tell me I had cancer.  Everything in my life changed.  But, this is actually not why I called my book Everything Changes.

During cancer treatment, many patients rack up hours sitting on their toilets.  I kept a big stack of reading material next to mine.  I would open to random pages in the Tao de Ching, a Chinese philosophy book written in the 6th century BC.  One day in the midst of wishing my life were different, that my body aches would subside, that I would not be single on a Saturday night sitting on the toilet with cancer – I opened to a random page in the Tao de Ching and pointed to the words ‘Everything Changes’.  And it is true.  I’m now married. I still have cancer but I rarely have body aches.  And I spend much less time in the bathroom.

The mantra ‘Everything Changes’ gets me through the hardest moments of living with cancer.  No matter what any of us are experiencing right now, a basic truth is that everything changes.  It is great to know that I won’t stay stuck anywhere forever.

I’m not naive.  I know change could lead me down hill instead of up.  But that’s just reality.  I don’t need magical thinking to get me through tough times.  I just need a bit of truth that keeps me moving forward.  Everything changes.    That’s real.  That’s something I can count on.  And in desperate times, having something to count on is my definition of hope.

I loved talking to Tracy, a breast cancer patient in Alabama who I interviewed for my book.  Before each treatment, she sat in the parking lot and read Psalm 23.  Do you have a favorite quote, phrase, scripture, or mantra that gets you through hard cancer times?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy and how she coped with treatment related fear and depression.

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November 09, 2009

Ever Disobeyed Your Doctor’s Orders?

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When it comes to following prescription drug dosing and directions, I’m like a teacher’s pet.  I’m terrified of potential drug side effects – almost to a neurotic and paranoid level.  And I do exactly what my doctor says.  But many patients don’t or can’t.  Especially with the economy in the crapper, I know a lot of people who are splitting pills or skipping out of medications all together.

There have been times, however, when I’ve made educated decisions to go against my doctors’ orders for procedures.  I don’t have a medical degree, but I do have a ton of common sense and research the hell out of my disease.   And sometimes it makes more sense to me to disobey what my doctor is recommending. Here’s an example:

The last time my doc ordered a biopsy of nodes that were half a centimeter, I said, “Forget it.  Let’s watch them and if they grow larger than 1 centimeter, I’m game.” I’ve done my reading.  Medical guidelines don’t recommend biopsies of puny thyroid nodules less than 1 centimeter because the results usually come back as inconclusive.

But, sometimes my desire to disobey my doctors isn’t because of common sense examples like this.  It’s because I’m scared of pain.  I loathe anesthesia.  I don’t want to make one more trip to the friggin hospital.  I’d like to forget the trauma of being a young adult cancer patient.  These are the times that I fantasize about disobeying my doctors.  But still, I drag my myself to the hospital for the scan or surgery anyway because it is the smart thing to do.  (Says the woman who is long over due for a pap smear.)

I try hard to leave my emotions out my medical decision making. I don’t believe in using prayer, faith, or hope when it comes to making sounds medical choices either. I am a staunch believer in evidence-based research and common sense.  I am shocked though how often my really top-notch doctors do not approach my case with common sense.  This most often happens when they are racing the clock, or treating me as a statistic and not an individual whose symptoms and responses don’t always match the typical patient.

I’m not trying to promote Bernard Getz style medicine.  But I am interested in taking action when educated, logical decisions makes more sense than my doctors’ recommendations.

Have you ever disobeyed your doctors orders?  What was your reason for doing so?  Have you ever wanted to disobey their orders but been too scared to?


Read
Everything Changes: The Insider’s Guide to Cancer In Your 20s and 30s to learn about Geoff who ignored his doctor and went mountain biking the day after his port was installed.

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November 06, 2009

Has Cancer Stolen Your Private Space?

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Some people feel their body doesn’t belong to them anymore during illness; it belongs to the doctors.  With cancer, I didn’t just surrender my body,  I also relinquished the privacy of my home.

During surgery and treatments, my mom traveled to San Francisco and moved into my studio apartment.  My kitchen was in a separate room and she retreated there to read, quilt, and write letters, trying to give us each a shred of privacy.  I never asked her for this seven feet of privacy.  She probably needed an escape from caregiving as much as I needed to feel like a grownup with an ounce of independence.

I’m not a clean freak.  Some days it looks like a tornado tore through my home.  But during cancer treatment, I wanted everything in its place.  I suddenly liked things tidy, wanted the floor swept, and my bed made.  I wanted control over my domain.  At 27, I was suddenly roomies with my mom who I had not lived with for 10 years. It was a tug of war.  I needed and wanted her there providing household help and emotional comfort. But I also wanted to feel like an adult with a life and a home of my own.  I wanted to cry alone sometimes and to eat cereal for dinner without being questioned.

Lots of patients in my book Everything Changes adapted to new living situations during treatment.  Some had a revolving door of friends with keys to their house dropping by to help with errands.  Others had to make a hospital room their home, and some moved in with parents or cousins.  We all found ways to stake out territory in our less than private shelter.  During my second treatment, when friends stopped by with food, I got good at telling them when I wasn’t well enough for them to stay and chat.  Dana’s mom posted a large sign on the door of her hospital room instructing nurses when they could and could not enter.  When Wafa’a moved in with her folks she lit candles and listened to Nina Simone making her bedroom a retreat from the rest of the house.

In a life or death situation it’s easy to say that all we want is to be healthy.  But I think there’s a whole lot more that we can want too.  Privacy was at the top of my list.

Did you lose your private space when you became ill?  How did you cope with it?

For more strategies on coping with cancer and privacy, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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November 04, 2009

Patients For A Moment

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Today I’m hosting Patients For A Moment, a bi-weekly blog carnival with links to select patient blogs.  I’ve created four themes for this edition. Enjoy reading and be sure to catch the November 18 installment on Chronic Babe.

Melting My Stone Cold Heart
After the flood of breast cancer stories in Pinktober, I wondered if patient stories could still melt me or if I’d become inoculated and immune to the tender heartedness of illness.  Nope.  Nine year old Chloe made me melt.  Steve Catoe writes about her in A Beautiful Heart on his blog Adventures of A Funky Heart.

Intimacy is palpable as banter unfolds between Alex Hohmann and his nurse Jill in Laughter Where You Least Expect It on Aegletes: Alex’s thoughts on cancer, politics, being gay, music and so much more.

Can we wear our feelings and kvetch about a new diagnosis or do we have to be good solders fighting the good fight?, wonders Barbara Kivowitz in The Shape of Grief on her blog In Sickness and In Health.

Helping 101
Need Cliff Notes for schooling family and friends on how to help you when you’re sick?  See Bridget McCullough’s  Back From the Brink on My Cancer Deployment.

Chris Blumer’s  A Streetcar Named Dilaudid on Chemo and Vino dives into the emotionally charged terrain of saying ‘Thank You’.

Do you get help from God or find strength in flying solo?  Here’s the post that elicited the comment “Nobody likes someone pissing in their Jesus flakes.”   What’s Your Cancer and Religion Connection? on my blog Everything Changes.

Practically Speaking
Young adults are the largest group of uninsured adults in the U.S., forcing us to be practical and clever about getting care.  Leslie Rott writes about    The Things We Do For Health Insurance…Er…I Mean…Love on Getting Closer to Myself.

Living with chronic illness?  Need tips on how to pack a suitcase and so much more? Visit Chronic Babe and check out Fibromyalgia: HealthWomen host tons of new tips, including videos with Editrix Jenni Prokopy. We know she can write but she’s damn articulate in front of the camera too.

Looking for practical excuses to ditch a bad date or escape a spousal argument? Read Duncan Cross‘s hilarious  Dr. Cross’s Compendium of Useful Illnesses.

Laurie Edward’s writes about handling life Priorities in the “gray area in between the everyday and the extreme” on A Chronic Dose.

Eating is a pretty simple daily task – well sometimes.  Cathy Bueti talks about how juicing became an obsession in My Juicer is Dusty on In My Life.

Thinking is a pretty simple daily task – sometimes.  Kate Burton outs her stammering brain fog in My Chemo Brain on After Cancer, Now What.

Dictionary Love
My inner-author and inner-patient geek out together over words, language, and medical meanings.  I’m glad to know I’m not the only one.  Kelly Young dissects the technical meaning of ‘complications’ in  Reasons to stop saying “Complications” of Rheumatoid Arthritis on Rheumatoid Arthritis Warrior.

Dr. Wendy Harpham asks ‘What’s the difference between a disease and illness?’ in “Disease” or “Illness” on Wendy Harpham on Healthy Survivorship .

Selena Inouye’s S word in Each Has Their Suffering on Oh My Aches and Pains.

Pat Steer tells what it means to be a statistic in I am A Statistic on Life Out Loud.

Have fun reading, then stop back to let me know which blogs you visited, which posts struck you the most and why.

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November 02, 2009

Too Lazy to Exercise?

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I get winded from climbing a flight of stairs.  This is pathetic.  Aside from having two tumors in my neck (which have no impact on my lung capacity) I’m not sick.  I’m just lazy. I’m a skinny, out of shape weakling.  I’ve always hated exercising.

I’ve been a dancer and choreographer most of my life.  But to me it never was exercise; it was a profession.  Since my first surgery I’ve suffered from dizziness that keeps me from dancing.  I feel like I’ve been evicted from the heaven of the dance world and am now walking among mortals who have to face the drudgery of jogging, yoga, and stair masters.  I find exercising utterly and mind numbingly boring.  I detest it.

I’ve tried many strategies to get myself to exercise.  Positive reinforcement: Reading clinical studies about exercise benefits for cancer patients.   Negative reinforcement:Imagining myself  with osteoporosis.  Guilty reinforcement: Thinking of young adult cancer patients who are too sick to even walk.  Creative reinforcement: Rearranging corners of my house as workout space.  Retail reinforcement: Buying a new pair of Adidas.  Practical reinforcement: Creating 20-minute exercise schedules n my mind.  Writerly reinforcement: Writing tips in my book Everything Changes on how to get back into exercise after surgery and treatment.  None of these tricks have worked.

As a cancer patient, I’ve learned that sometimes how I think and feel about something doesn’t really matter.  Sometimes in life you have to force yourself to do things whether you want to or not, like having surgery or radiation. So if exercise is boring to me maybe that just doesn’t matter.  Just do it.  I’m lazy and unmotivated?  Just do it.  Maybe this is why Nike’s slogan Just Do It really stuck.  Perhaps it appeals not only to motivated athletes but also to lazy consumers like me.  I originally thought that writing this blog post outing my slothy lifestyle would shame me into exercising.  I don’t think so.  No trick is going to work for me.  I just have to do it.

Do you have a love, love/hate, or hate relationship to exercise?  How does illness impact your exercise choices?


Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for tips and recommendations on how to safely exercise after surgery and treatment.

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October 29, 2009

What’s Your Cancer and Religion Connection?

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God talk is embedded in a lot of cancer conversations: “It is all a part of God’s plan.” “The universe is trying to tell me something.”  “God doesn’t give you something you cannot handle.” (Major puke on that one.) “I’ll say a prayer for you.”  These exchanges are so common we rarely think twice about them.  Unless you are someone like me who doesn’t believe in God or the Universe.

Many people say a benefit of cancer is connecting with amazing people you might not otherwise meet.  I agree.  And part of that is meeting people with different religious faiths and beliefs, including non-belief.  In Everything Changes, I met and wrote about an Evangelical Christian, conservative Jew, Buddhist, Muslim, Catholic, atheist, and a follower of Amma.  I had with each of these young adult patients open conversations about faith and illness.  I miss these conversations.  Especially because in the greater cancer community, I often feel it is just assumed that I believe in God.

Last week, a super cute 8 year old girl was petting my dog Moses in the park.  Out of the blue she asked me if I believe in God.  When I told her I didn’t, she asked what I believe in.  I replied: “I believe in people, and that if people want to we can help each other out and make great things happen in the world.” She seemed cool with that.  We talked about her Baptist church and then she skipped away to the swings.  I adored this simple, respectful, uncomplicated conversation.

In the cancer community, my not believing in god doesn’t seem as simple.  A lot of patients and families relay on faith to get through illness.   And sometimes it feels a bit uncomfortable when I acknowledge that faith does not play any role in my healthcare.  I don’t judge anyone else who wants to use faith as a part of their healing.  It just isn’t my own cup of tea.

I was raised Jewish.  Judaism is a religion that does not proselytize, and a religion that is in the minority.  I grew up noticing differences in religions yet never assuming that anyone believed in what my family believed and I never wanted or needed them to.

What role does faith play in your health? Have you met people of different faiths in the cancer community? Do you talk openly about your beliefs?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for some cool conversations about health care and faith.

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October 26, 2009

Addicted to Your Illness?

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I have spent the last six years reading, researching, and writing about cancer.  I am so fulfilled by this work, but sometimes I wonder if it is always the healthiest choice of how to spend my time.

My cancer has never been in remission and it could be with me for a long while yet. Cancer is an uninvited companion in my body, but that doesn’t mean it always has to be on my mind.  Usually my expertise about young adult cancer seems like a great asset that benefits my own care and helps others too.  But lately I’ve been wondering if I have built a little cancer trap for myself.

Right now I have the luxury of feeling well.  I don’t look or feel like a cancer patient, but I think and write like one.  What would I write about and how would I spend my time if I moved cancer from the front burner to the back burner in my mind?  I don’t even know the answer to this question. And that’s a bad sign. Perhaps while I’m feeling well, I should focus a bit more on the world beyond cancer.

So I’m giving myself a little assignment.  For the next few weeks, I’m going to write one post per week that is not about cancer.  Just for the hell of it.  Just to break my little addiction to the small world of illness I’ve built up around myself.  I hope you’ll still read and comment as I experiment with the great beyond.

Do you ever feel like you need a break from focusing on illness or that it consumes too much of your identity? Do you volunteer for cancer organizations, work in the healthcare field, blog or write about illness on top of being a patient too? I’m taking requests: What would you like me to write about in my non-healthcare posts?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about coping with life beyond illness.

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October 23, 2009

Do You Know About Your Doc’s Private Life?

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I injured my knee while napping on Wednesday.  (Who gets injured napping?)  Still super painful on Thursday, Shannon pushed me into my doctor’s office in a wheelchair.  The cause of the pain is still a mystery.  We joked with my doc that it’s H1N1 in my knee, or a very new and original manifestation of PMS.  He told me to ice, rest, pop Advil and check in with him on Monday when he gets back from vacation.

My doc’s going on vacation.  Well that’s what he said at first.  Then at the end of the appointment he said, “I’ll be back on Monday, it’s a simple procedure so I should be on my feet in no time.”  What?  He slipped up but obviously wanted me to think he was off to Tahiti not the OR.

The same day, I read on the New York Times Well Blog a post called ‘When Doctors Confide in Patients.’  They told about a young woman diagnosed with MS who worried out loud to her doc about not being able to have kids or work.  The doc confessed she was living with MS too, working as a doc and had kids.  It helped the patient so much to learn about the doc’s life.

I adore my primary care doc.  He’s probably my age and so easy to talk to.  He tells me anecdotes about his life in passing but I don’t have too many details.  Our relaxed conversations help our communication, which in turn improves my care.  But  there needs to be space.  If I knew too much about his life it could get in the way of him giving me appropriate care.  For example, would I be cool with him slacking off or slipping up if I knew he was just diagnosed with cancer last week?  As a patient, I should not be put in the position to have to make that decision.  I think my doc strikes the perfect balance with me of personal and private.  With docs, I think there is a fine line of TMI.

How much do you know about your doctors’ lives?  Do you like knowing about your doctor’s life, is it weird or ever too much information?

For tips on improving communication with your doctors read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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