Posts Tagged ‘mental health’

Lance Armstrong, Susan Komen, and Me

01.20.2013

I have had variations on the following conversation ever since I finished treatment:

convo

 

I know this does not make me popular. I know some of you reading this find me coarse and unnecessarily harsh.

But you how no idea how much pressure there is to be inspiring after cancer.

Perhaps if my initiation into CancerLand had not involved losing somebody dear to me, I may have taken up this mantle and done my best to own the Heroic Survivor story.

But I came in to my diagnosis with the rawness of losing my brother, lending me a take no prisoners attitude against cancer.

I always wanted to know the goriest details. I had no romance for this experience. My oncologist marveled about me early on in my treatment, “You have no denial mechanism.”

So what does all this have to do with two of the most famous cancer patients of our day, Lance Armstrong and Susan Komen?

Like my brother, Susan Komen died at a young age. Her sister Nancy Brinker famously promised™ to help put an end to breast cancer.

I empathize greatly with the young Nancy. I know firsthand the impotence we feel as we watch somebody we love die. I understand the appeal that her organization holds, particularly for those left behind who want to do something in the wake of so much helplessness.

In becoming a legend, Susan Komen ceased to be a full person. Instead she became a symbol for her sister’s wish. Who knows what Susie was really like, since her persona has been carefully crafted by her surviving sister. (Twitter is haunted by a ghost who begs to differ with Nancy’s account of her love of pink and shopping).

Whatever the truth once was, Susan Komen has become the Noble Patient who gave her sister’s life Greater Purpose.

Then there is Lance Armstrong. Like Susan Komen, he was diagnosed with cancer at a young age. Like Susan Komen, he faced Stage 4 cancer. He not only managed to achieve remission, he became a paragon of health, winning the Tour de France an astonishing seven times.

Lance Armstrong became a legend. He beat the unbeatable, the Ultimate Survivor, becoming an inspiration to many who donned yellow bracelets and hoped to be half as lucky as he.

Many of these same people felt betrayed this past week as Lance finally admitted to doping to bolster his performance.

I was not among them.

Personally, I had long seen the limitation in his story as an exemplar: testicular cancer is one of the few cancers that is reversible at Stage 4. But details like that don’t matter in hagiography.

So while I am grateful to Livestrong for drawing attention to survivorship as a phase of cancer with its own needs for medical attention and social support, I am not heartbroken to learn that Lance’s feet are made of clay.

Lance’s legend, like sweet Susie’s, has put undue burden on plain folks like myself whose path to recovery is neither straightforward, triumphant, or full of Hallmark Channel Movie inspiration. (My friend Xeni wryly calls the saccharine survivor genre “cancer porn.”)

Lance, it turns out, is all too real. I am sure Susie was too. Lord knows her sister Nancy is.

So, Well-Meaning People, this is the answer to your question:

My life was rich before cancer took my brother from everyone who loved him.

I had gratitude before I had to go through almost two years of devastating treatments from which I am still experiencing side-effects, social, emotional, financial, and physical.

Am I humbled by my friends’ love for me? Absolutely.

Have I redoubled my commitments to be there for others in their time of need? Undoubtedly.

But, really, Well-Meaning People. This is just a deepening of what already existed for me.

If cancer were eradicated tomorrow, life would still provide plenty of adversity to remind us about what counts.

 

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Posted in Survivorship | 19 Comments »

Mortality Acting Out

11.11.2012

What do Walter White and General Patraeus have in common?

Aside from being white American men of a certain age, maybe not much.

But they do both have a cancer diagnosis.

Does this explain the General’s recent revelation that, after a 38 year marriage and while holding a position vulnerable to blackmail, he has been carrying on an affair, perhaps even with two women at once?

I do not generally engage in the gossipy side of news, but when I found out that, beyond the scandalous headlines, Patraeus is facing a cancer diagnosis, I could not help but wonder if the two were related.

Since my brother’s diagnosis over 7 years ago, I have witnessed and experienced firsthand numerous instances of what I have come to call Mortality Acting Out. As I explained on twitter this morning:

Since becoming a patient myself, I have used my anthropological skills to explore CancerWorld and document instances of Mortality Acting Out. I have heard stories about sudden affairs after longterm monogamy, increased promiscuity, quitting stable jobs, breaking off friendships, and reckless spending. It’s like a midlife crisis on steroids.

Do you have a story to share? You can add it in the comments section or email me at babe[at]chemobabe[dot]com. I will write a follow up post on this topic in the coming weeks.

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Posted in End of Life, Survivorship | 1 Comment »

Schooling the Resident

08.11.2012

I had my (almost) 3 year follow up appointment this past week.

The good news: NED.

The bad news: The life of an oncology patient is still often beneath my dignity.

I arrived to the clinic early. Since I am a patient in a teaching and research hospital, this often means I get to help the new residents practice their clinical skills. I am an educator, so I believe in the value of this kind of training.

It’s just sometimes hard to take when I have lost a night’s sleep worrying about impending lab results.

So the newbie doctor went through his clumsy interview. I confess I was not a patient patient as he (re-)explained many aspects of my treatment and the side effects I am experiencing.

I thought, Oh really? The shooting pain down my arm might be nerve damage and lymphedema?
Yeah. I know. I’ve been going to physical therapy twice a week.

He proposed Cymbalta for the nerve pain. I brusquely told him that I am a Side Effect Queen.
Drugs are seldom worth the trade off for me.

I could tell he wanted me to like him and put him at ease, but I didn’t really feel it was my job. He has to get used to us oncology folk.

Then my real doctor came in and did her thing. I was relieved. She too wanted to talk me into the Cymbalta for my nerve pain.

Did the Cymbalta people take you out to a nice dinner at the last ASCO meeting? I joked.

No, they don’t make enough money off of me.
She knows how to roll with me. This is why I love her. She continued, joining in on the snark.
This is a low dose. It’s like licking a f***ing pill. If you don’t like it stop. But it won’t hurt you to try and it could help.

I turned to Junior Doctor and said, Watch and learn from the master.

I agreed to try the Cymbalta.

As my doc continued her thing, I noticed that the young one had started fiddling on his iPhone.

I felt my heart rate go up. A half dozen call-outs flashed through my mind.

Really? That camera is pointed right at me dude. Are you live tweeting your clinics? What’s the hashtag?
I can tweet it too and let my followers weigh in. Oh are you Instagramming? I’m pretty sure that violates HIPAA.

When he left the room for the exam portion of the appointment, I said to my doc,
Dude was on his iPhone. Not cool. You need to say something about it.

I will, she assured me.

After the appointment, I blew off some steam by posting about the incident to my social media peeps.
They came up with some snappy comebacks too:

Dr. Douche, does the AppStore have anything to help me find a better oncologist?

Hi. Is it Doctor X? Hi Dr. X. I’ll just take that from you: It’s distracting. You can pick it up from me at the end of my consultation.

So sorry. Is my medical appointment interrupting your texting?

This cap fest was gratifying in a sophomoric kind of way.

But I realized what I really wanted to do was get him to realize that this meeting was not about him.
To give him a good dose of empathy.

Listen, Doctor. I am sure you are a smart guy and have done well in school and studied hard to get to where you are.
Can you imagine that I did that too? I built my life, was moving forward, taking care of myself, my career, my family and then BAM! CANCER.

You are new to My Cancer but I am old hat now. I have been doing this for 3 years. Three effing years. Every time I come to one of these appointments, it feels like a lot of bull. All the pain, all the fear, all the bad times come back to the surface for me as I sit in this office, waiting for my latest news.

Treat me with humility: you don’t know the extent of my experience. Offer me information with the understanding that I may have heard this before: this has been my life. Don’t expect me to reassure you: that is not my job. I have a lot on my plate. You need to get your affirmation elsewhere

Oh, and also?

Put away that damned phone.

I realize that NED gives me the luxury to bitch about these details. I am grateful.

I hope that my griping helps those of you who are in treatment or are dealing with long term disease.

Epilogue:

I emailed my doctor to make sure she followed up on the phone. She did. Doctor Junior is sorry and won’t do it again.

I kicked the Cymbalta after one dose. It made me unspeakably nauseous. The Side Effect Queen continues her reign.

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Posted in Survivorship, Treatment | 15 Comments »

Equilibrium

06.22.2012

I have not disappeared, dear blog readers. Summer started around here, right after my last post, complete with graduations, barbecues, summer camps, fireflies, and mosquitoes.

Now that my last surgery is over, I have the goal of finding new equilibrium in my life. Under the best of circumstances, managing a career, family, friendships, marriage, and health is a big undertaking. When 2 years, 7 months, and 11 days of cancer treatments get thrown into the mix, it becomes impossible. So much has gone to the wayside.

My pact with myself is to start picking up the pieces of all that has been cast aside.

My two biggest challenges? Limited energy and impatience.

I still get worn out by the end of the day, sometimes to the point where I have to climb in bed. My to-do list is long, and it includes giving more of myself to the people I love.

I have tried to meet this challenge by managing my energy. Everything and everyone is now sorted into two categories: energy giving and energy draining. Things in the latter category are ruthlessly put aside. Children, are of course, a bit of both, but I am their mother and I love them. To give them more of me, I am cutting back on some   hours at work while they are out of school. I am glad to have this as an option, even though it may make the financial equilibrium a more distant reality. The soul satisfaction I feel when I bake a pie with my daughter, take my kids to the park, or just hang out and snuggle lets me know that I am on the right track.

It’s hard because part of me is used to my take-no-prisoners approach to catching up when I fall behind.

But I am so behind. And when I hit the wall, it is made unforgiving, solid brick.

I know I won’t knock out all the things I wish to do this summer, but if I can give back to the people I love, I think I will be happier.

 

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Posted in Survivorship, Wellness | 14 Comments »

Not the Post I Wanted to Write

05.20.2012

I imagined that after a week of resting and recovering from my last surgery, I would compose a blog post full of gratitude.

In my mind, I played with how I would balance expressing the humble appreciation I feel for all that has been done for me and my family over the past 2 years, 7 months and 11 days since that awful day I received my diagnosis. I fretted because I knew may miss some of the generous gestures that may have escaped my memory or notice.

To be sure, I am grateful. Unspeakably so. I will spend the rest of my life graced by the knowledge that friends near and far, colleagues, kids’ friends, neighbors, classmates, fellow congregants, community members, mentors, acquaintances, and even strangers came through with uncountable kindnesses.

I want to tackle that writing problem. It seems gracious and puts a nice bow on things.

But I am overwhelmed by a less warm and fuzzy set of issues.

I should know this emotional terrain by now. Whether the end of chemo or radiation or whatever, these finish lines in treatment seem to vanish like mirages when I actually close in on them. They have always been fraught.

We focus on them, fantasize about how they will mark a fresh start, a new beginning.

They may be markers, but they do not operate so cleanly. In reality, we are damaged, compromised, and our lives are filled with incomplete and long delayed projects. Chaos has entered our lives. Where do we begin picking up the pieces?

Photo by Micke W.

There is no pause button in my life. Everything rolls on, even as I try to heal. My work projects move forward, with crises, deadlines, and important decisions. My children and husband need me –– there are carpools to coordinate, conferences to have, problems to solve, finances to refigure.

I want to take stock of the damage these past years have brought, to clear out some of the mess so that I can figure out where to begin anew.

Photo by Xorlaryn

But, once again, I am lost.

Where do you start?

How do you find the space to deal with the chaos cancer brings?

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Posted in Survivorship | 39 Comments »