Posts Tagged ‘self-advocacy’
I have had variations on the following conversation ever since I finished treatment:
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.
Tags: advocacy, attitude, changes, coping, daily life, essay, gratitude, healthy people, identity loss, Lance Armstrong, mental health, self-advocacy, straight talk
Posted in Survivorship | 19 Comments »
Institutions in this world inadvertently carve out an imagined life of the people they serve. It’s like the negative space in a painting or photograph: what isn’t there can communicate as loudly as what actually is there.
In my non-blogging life, I am an educator. I started my career as a public high school teacher. I quickly saw how events like Back-to-School Night assumed parents had lives that permitted a couple of free hours on a weekday evening, with the transportation, childcare, and schedule that would allow for this to make sense.
I am used to institutions and society making false assumptions about me. Some of my very early awkward moments involved being in the grocery store and having well-meaning adults ask me what Santa was going to bring me for Christmas. (I am Jewish and have never celebrated Christmas.)
This is not an indictment of society. We have to have some baseline assumptions about how the world works in order to function. To do otherwise can be paralyzing as you try to account for every circumstance. When you are a part of a group that represents less than 2% of the population, your experience may not factor in for many folks.
I find myself in a new invisible minority as I am dealing with recovery, one whose reality is not part of the imagined world of many institutions I encounter.
To play on the tagline of my blog, I often feel like hell, but I don’t usually look like it.
It is hard for people to imagine the careful strategizing that goes into allocating my very finite, very uncertain time and energy. I have anywhere from 8 to 12 good hours a day, and in that, I must attend to my health, my family, my job, and hopefully, some of my important relationships.
It’s the usual working parent juggling act, only performed on a tightrope.
As a result, I have learned to say no to things. I have become extremely discriminating about commitments, making sure they serve important goals before agreeing to them.
My work folks mostly seem to understand. My family mostly seems to understand.
The place I have had the hardest time is in parent communities.
Even before I was done with treatment, I was approached by a PTA president asking me to volunteer for something. I responded quite directly (perhaps curtly — I don’t remember — thank you, chemobrain), explaining that this would not be possible right now and most likely not for some time.
The requests do not end, and for the most part, I have gotten over the guilt of having to beg off.
But then today, I ended up in a parent meeting that was really not a good use of my time. I had originally intended to forgo it –– it was a 3 hour meeting –– but had been told directly about its importance. So I skipped my Sunday morning exercise, planned to delay my errands, and made room in my calendar to attend, not entirely certain how everything else was going to get done.
As the content of the meeting and its irrelevance to me became apparent, I felt myself fuming. I tried hard to talk myself down: They have no idea of the energy calculus that goes into every choice. This might actually have a lot of good if you had the time and energy for it.
The best I could do initially to contain the belligerence burbling inside of me was to avoid eye contact, look at my phone, and just kind of shut down. I quickly realized that whatever good this conversation had to offer would be lost on me.
At the most convenient moment, I made my exit.
On the way out, I caught up with one of the organizers. I tried hard to be a mature grown up, but all my buttons about recovery and struggling to keep up, let alone add in a 3 hour parent meeting, had been pushed hard.
With perhaps a little too much desperation, I explained my situation. I explained that my schedule is a zero sum game, that there are no extra hours to be squeezed out of a day by sacrificing sleep. The time I have is the time I have, and its often less than I think. I explained that, in the future, I need to get a full agenda so I can come for the most relevant parts.
I am not upset at the organizers. They did not mean to put me out, and were only kind and compassionate once I explained my limitations. I am not upset at the other parents. I am coming to believe that, no matter how empathetic people are, our imperfect humanity limits our ability to fully imagine other people’s circumstances. In the end, this organization assumes families have healthy parents whose Sunday mornings are free.
And, as of now, that is not my case.
Tags: appearance, changes, coping, daily life, essay, fatigue, healthy people, identity loss, parenting, self-advocacy, straight talk
Posted in Survivorship | 10 Comments »
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.
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.
Tags: advocacy, awkwardness, changes, coping, doctor-patient interaction, education, identity loss, mental health, self-advocacy, social media, support, what not to say
Posted in Survivorship, Treatment | 15 Comments »
Picture what it is like, being in the hospital.
The sterile, enclosed environment. The fluorescent lights, the rooms designed for medical treatment, not for any kind of aesthetic pleasure. The machines ominously whirring and bleeping. The periodic sounds of crisis in the hallways. The shadows of mortality and frailty. The bland, institutional food. The strangers who come in, announce their names with varying degrees of engagement, perform tests, invade your body, give treatments that cure but hurt. Isolation from family and friends. Pain, discomfort, frustration, uncertainty, followed by hurried interactions filled with obtuse, technical language.
What is the opposite of being in the hospital?
Cancer retreats always seem to provide an answer to this question. I’ve been to a few now, so let me explain.
Life Beyond Cancer said that the opposite of a hospital is a spa-like retreat. We had a program of activities at a calm and self-directed pace, delicious healthful food, companionship, inspiration, and activities to soothe and heal the body.
Little Pink Houses of Hope sets its retreats at the beach: fresh air, sand, the expansive ocean, and sunshine. Our days were filled with art, outings, no financial stress and quality family time.
This past weekend, I had the pleasure of going to the OMG! Cancer Summit For Young Adults with StupidCancer.com.
(Faithful readers may remember that they are the group with whom I ran my first post-treatment half marathon.)
Stupid Cancer has a different answer to the Opposite-of-a-Hospital question:
Photo by John Sabia
Literary theorists talk about the human need to turn the World Upside Down (WUD). Think Charlie in the Chocolate Factory or Dorothy in Oz. It’s a way of regaining equilibrium, particularly after a stressful situation.
My belief that cancer retreats seek the Opposite-of-the-Hospital to help us regain equilibrium.
Vegas definitely turns the hospital world upside down. Raunchy, smoke-filled, hedonistic, youthful, indulgent, living in the moment, sin, impulsiveness, swaths of people, over-the-top spectacles, the cacophony of music and slots.
More importantly, the conference itself was terrific.
Workshops focused on a combination of social and emotional issues relevant to young adult survivors: sexuality and body image, dating and relationships, spirituality, links to the environment, careers, insurance, advocacy.
Then we would do things like dance to a DJ in a rooftop nightclub.
Screenwriter Will Reiser spoke with Stupid Cancer founder Matthew Zachary on Saturday after receiving the first ever Extreme Survivor Award for 50/50, his film about a young adult diagnosed with cancer.
Will Reiser & me. He’s a super nice guy.
That night, we had a midnight showing of 50/50. It’s a great film that captures many of the truths of young adult cancer, despite the few inevitable Hollywood touches.
Although I had seen it before, there was something unspeakably wonderful about sitting in a room full of young adult cancer survivors. We bonded through knowing laughter and deeply pained tears of recognition. At the end, my companions and I had filled our table top with tissues. We needed no words to explain the sobbing that overtook so many of us.
But tequila helped.
What happens in Vegas gets posted on the Interwebs. But it was a moment worth remembering.
I was invited to speak on a panel on life after treatment.
(YouTube video forthcoming…)
My friend Naveh says with my purse out front it looks like I walked in off the street
and strolled up on stage saying, “Let’s do this thing!” then went shopping.
When you meet other young adults who have been through cancer, you can tell your back-story in two sentences. In normal life, it takes paragraphs to explain a cancer experience. Even if you get that far, it never adequately captures the experience.
Starting the conversation so deep into something that has profoundly altered your life allows you different kinds of conversations and connections, the kind that deepen your own understanding of your self and something that has touched you at your core.
That kind of experience, without a doubt, is the World Upside-Down.
Tags: advocacy, attitude, body issues, changes, coping, daily life, gratitude, hope, identity loss, mental health, self-advocacy, stupid cancer, support, survivorship
Posted in Survivorship | 14 Comments »
I’m sorry I haven’t posted in awhile. My regularly scheduled life has demanded much of me lately. I also have been contending with fatigue. It’s been a bit of a dance — keep on top of life and manage to rest and exercise.
It’s a little scary to have experienced a sense of ascension from the Cancer Pit and then feel it tug me back in. Aside from my own physical symptoms, last week two online friends died. Both were parents of young children. Both were around my age. Sarah had been in remission and faced a recurrence that ultimately killed her.
This is Sarah. She made a promise to herself that she would die with her hair.
Derek wrote about going through the same treatment as an online friend on the same timeline. His friend’s treatment worked, but his did not.
These events renewed my sense of urgency about improving our understanding of cancer –– not just breast cancer, but the ovarian cancer that killed Sarah and the colorectal cancer that killed Derek.
Last week, I also participated in my first clinical trial. I had learned about it through Susan Love’s remarkable project, The Army of Women (AoW). I had a doctor’s appointment anyway. It only involved drawing a few extra tablespoons of blood and a follow-up phone call. The researcher I spoke with said that AoW has made a huge difference in their ability to recruit enough subjects for their study. Across the board, she said, the participants have been eager to help.
I had intended to do another clinical trial at the end of my treatment, but it didn’t work. For that trial, I would take Metformin to prevent a recurrence. Because my tumors were hormone-receptor negative, I am not taking anything like Tamoxifen or Armidex to prevent recurrence. My chance of recurrence is around 20-30%.
My oncologist had explained to me why they were prescribing the diabetes drug to breast cancer survivors. They had done meta-analyses of survival and recurrence rates in breast cancer survivors. Metformin seemed to significantly lower recurrence rates when they looked at populational data, controlling for other factors like weight, age, and fitness. They thing it has to do with cortisol suppression.
I ended up not being able to do the clinical trial because the Metformin shipment got held up in Canada. By the time it arrived, I was no longer qualified because of my date of diagnosis. My doctor offered to prescribe it to me for off-label use.
I hesitated. There are potential gastrointestinal side effects to Metformin. And for those of you who are new to my blog, you may not realize that I am a Side-Effect Queen. No discomfort, however small, seems to pass me by.
Then Sarah and Derek died.
That was it.
I called my doctor and decided I couldn’t bank on my fitness, youth, and good attitude to prevent a recurrence. I felt better about doing something at a molecular level that might interfere with tumor formation.
I spoke with three breast oncologists who thought the Metformin was a good idea. My blogger buddies who went to the National Breast Cancer Coalition conference and reported that the Metformin trial seemed like the most promising thing out there in preventing recurrence.
I needed to make a choice. The consensus was that this seems like a good one.
Because if my cancer comes back, it will be metastatic.
Diarrhea or metastatic cancer?
I’m going to take Door Number 1, Bob.
Let’s hope I have made the right choice.
If you are a woman in the US or Canada, please sign up for the Army of Women. You don’t have to be a cancer survivor. There are a lot of clinical trials out there that just need participation. We need a better understanding of cancer. Knowledge is power.
Tags: changes, clinical trials, coping, fatigue, self-advocacy, survivorship
Posted in Survivorship, Treatment, Wellness | 20 Comments »