Posts Tagged ‘gratitude’
04.14.2013
Who are we? What makes our lives what they are?
These are some of the essential questions of our humanity.
Some answers to this question place a lot of emphasis on free will and merit, that our lives are largely the result of our deliberate action and inherited talent. Other answers emphasize the social forces that come into play, like poverty and access to education, that shape our life chances.
I had been heavily steeped in these sort of debates, but these conversations did little to prepare me for cancer.
When we fall ill, there is no escaping the profound connection between our bodies and our biographies. Social scientists Anselm Strauss and Jennifer Corbin illustrated this body-biography connection in different illness scenarios:
The dashed line represent an individual’s unfolding life story and the solid line represents the body’s path, both over time. The top diagram shows a chronic illness situation, with the body having its ups and downs, the biography dipping sometimes and holding steady others. The second diagram shows sudden catastrophic illness, with both the body and biography taking a drastic, irrecoverable dive. The last shows an acute illness and recovery, with the body and biography in sync.
I have been thinking of what the picture of my body-biography would look like. I think I would need to have different color lines for the different subplots in my biography; some aspects of my life have recovered better than others. It’s that very disconnect that can make day-to-day life uncomfortable: my external body looks recovered (well, with my clothes on anyway), but my energy and psyche are not back to their baseline.
This past week, my feeling of returning to my old biographical path got a boost.
As many of you know, I am a professor. One of the great parts of my job is that I get to have a sabbatical now and again. I haven’t yet had one in my career, and had really looked forward to taking my family abroad for some stretch of time. Travel has always been a great learning experience for me, and I was excited to share that with my children.
Things have fallen into place: my sabbatical request was granted, the visiting scholar fellowship came through, and we are off to Israel for a couple of months next Fall. There is still a lot to be worked out, but what a delightful disruption this will be.
It has me hopeful that, someday, my biography will feel like it’s mine again, like I am authoring the story and not simply having to maintain a sense of myself in the face of the loss of illness. This is a big first step.
Tags: appearance, attitude, body issues, changes, coping, daily life, gratitude, identity loss, parenting, survivorship
Posted in Survivorship | 1 Comment »
01.20.2013
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 »
12.30.2012
Believe it or not, I was a social media dabbler before I started this blog three years ago.
I even live tweeted my mammogram.
The difference? I had about 30 followers at the time. There were no replies, no retweets to my story.
I was tweeting into the void.
Once I started my blog, I took my social media dabbling to a whole other level. I was just a gal with stage 3 cancer, a 10% chance of living 5 years, and nothing much to lose. So I opened a second twitter account under the name “@chemo_babe” to keep my identity hidden.
I got some traction in the twitter world on the eve of my second or third chemo. I was besides myself with anxiety, having suffered terrible side effects from the first dose alone. I found the hashtag #blamecancer, started by Drew Olanoff. Drew was moved by my tweets, started retweeting me, rallying others to support me. It was a phenomenal experience in the midst of a lot of suffering, this sudden embrace by total strangers who showed compassion for my plight.
To be sure, my blog has been a lifeline. Paradoxically, the anonymity I started out with helped it to be so. Hiding behind this persona, I could be as brutally honest as I needed to be. I spoke truths that resonated with others and helped me connect with other patients, caregivers, and doctors. It has been an education that I truly value.
Over time, I found the amazing #bcsm community. With the coaxing of supportive friends, I gradually “came out,” using my first name and eventually my second. I started getting media attention, locally, nationally, and even internationally. Soon everyone who could google knew that ChemoBabe was Lani Horn, just as anybody reading Marvel Comics knew that Superman was Clark Kent or Spider Man was Peter Parker.
When I finished my last procedure this past May, my old twitter pal Drew sent his congratulations and tweeted, “Are you going to change your twitter handle now?”
Then answer at that time was no. I have built a community through this identity. I have thousands of twitter followers and Facebook fans, tens of thousands of blog hits. Cancer was still a central part of my everyday life, as I battled fatigue and other side effects, working to pick up the pieces of my life.
That was May. Now it’s December, and I woke up last week feeling like the answer to Drew’s question had changed. Yes, I tweet a lot about cancer. But I also connect with knitters, parents, and writers. I livetweet awesome, tragic, and inane cultural events along with my twitter pals. “Chemobabe” seemed too narrow and burdened by the past to be my twitter identity.
So I went back to my old, hardly used twitter account and hijacked that name. I am now @Lanisia, a nickname my uncle still uses for me. It’s a name I made up when I was 3 and I announced to my stepfather that I was actually a lost princess.
“What’s your name, Princess?” he played along
“I am Princess Lanisia,” I said with as much royalty as I could muster.
My old pretend name thus supplants my newer pretend name. Lanisia takes over for ChemoBabe from here on out. All of this superheros, princesses, and make-believe seems fitting for the ephemeral, electronic world of blogs, tweets, and status updates, where bonds are made, experiences shared, and heartfelt truths are told.
Tags: coping, daily life, gratitude, identity loss, social media
Posted in Media, Survivorship | 11 Comments »
09.24.2012
The full version of this post is available on the Jewish parenting website, kveller.com. Click through to read the whole thing.
In 2006, my 35-year-old stepbrother was diagnosed with advanced metastatic prostate cancer. Jeremy faced his disease with tremendous grace and humor.
He died less than two years later.
His death was devastating for me. Although we had different biological parents, we became brother and sister when we were both just 2 years old. Only three months separated us, and some of my fondest childhood memories involve our make believe games and mischief together.
When Jer was hospitalized leading up to his diagnosis, I went to see him. For a few months prior to that, we had argued about something trivial. I wanted to tell him how silly the whole thing was and ask his forgiveness. Tearfully, I apologized.
With my arms around him, my voice shaking, I said, “I just need you to know this. I am me because you are you.”
“Me too,” he said, and gave me a squeeze.
This moment was bookended by another heart-to-heart exchange that happened right before he died. This time, Jeremy, frail and in pain, initiated the conversation.
He spoke slowly. “I want you to know what you have meant to me. When I think of you, I think of comfort, acceptance, and love.”
My grief was great when he died.
Read the rest here…
Tags: changes, essay, gratitude, grief, identity loss, spirituality, survivorship
Posted in End of Life, Survivorship | 3 Comments »
09.04.2012
As I process my whole cancer experience, I realize I cannot separate what I went through from the loss of my stepbrother two years prior to my own diagnosis. Sorting through my own trauma in order to heal, I have to go back before the date I was told, “You have cancer.”
This time of year is particularly painful for me, as it was the season of losing Jeremy. As the five year anniversary of his death approaches, I will post some of the updates I sent to friends and family at the time to share with you my firsthand accounts of that time.
We just got back from spending 10 days in the Bay Area, with the goal of being of as much service as possible to Jeremy and Beth [his wife]. I think we managed to help out, but it was a heartwrenching experience.
Not surprisingly, the situation with Jeremy was more complex once we got up close to it. The first thing that I needed to sort out was the state of the palliative care/hospice issue. As I indicated in my last post, I got our family on a plane as soon as I could manage after my dad called and told me that Jeremy was being moved to palliative care only, and that the doctors did not know how much time he had left. When I got there and talked to Jeremy, however, he was still talking about treatments and such, leaving me more than a little confused.
It turns out that he has two main doctors he is seeing right now, the pain guy and the oncologist. The pain guy is advocating for palliative care, and the oncologist is on the fence. So I contacted the marvelous advanced prostate cancer specialist here at the UW (Tia Higano) who has been consulting with me pro bono. I wrote her an email saying that I was kind of at a loss and did not have the expertise to judge what the right thing to do is in this situation. My dad and I spoke with her on the phone for over and hour, trying to summarize Jeremy’s treatment. She told us in a lot of detail the kinds of questions she would have about Jeremy’s treatment in making such a decision. The bottom line is, although the pain management has become the overwhelming issue, the door has not completely closed on treatment.
But the challenge of pain management cannot be underestimated. Jeremy is on high doses of pain medication, and still has a lot of what is called “breakthrough pain,” meaning that the pain breaks through the shield provided by the medication. Jer tells me that bone pain is particularly hard to manage. He was hospitalized during our visit to address breakthrough pain and swelling in his leg. Basically, his quality of life has greatly diminished, as his existence centers around pain management. Somebody has to be with him 24/7, supervising his medication, rubbing his hip and leg, reminding him to take care of basic things that he gets too distracted to remember. It is absolutely heartbreaking to see him suffering like this. On Tuesday, he has an appointment to get something called an intrathecal pump, which would administer meds directly into his spinal column, hopefully giving him quicker relief with less medication.
The miracle in all this is how, in the moments where his pain is under control, Jeremy manages to stay Jeremy. He has every right to be bitter and angry, but instead he wants to connect with the people around him in the most loving and authentic ways possible. [My husband] Adam spent a couple of nights at Jer & Beth’s, doing the overnight caretaking so Beth could get some sleep. (Jer wakes up frequently with pain issues throughout the night.) Adam had a chance to have some meaningful conversations during those wee small hours, and he expressed our awe at Jeremy’s determination to remain loving and resist bitterness. Jeremy basically said that if he doesn’t have a lot of time left, he doesn’t want to spend it being angry and pushing people away.
And, in fact, he seems to do the opposite. He and Beth have an amazing network of friends who come to help in every way they can. One day I came over, and he was getting a massage from a friend; another day, an at-home acupuncture treatment. This past Saturday, Beth actually had to turn away about 10 people who dropped by unannounced, because Jer was too tired to visit. Many of these friends told me about how much Jeremy has meant to them in their lives. He helped them climb mountains they were afraid they couldn’t conquer; he helped them contribute their talents to one of his many causes. He has inspired love and devotion in a lot of people.
But, outside of his family, no one is as devoted as his best friend, an activist with a kind of earn-enough-money-to-get-by lifestyle. He drove his vintage RV up from LA and is living behind Jer & Beth’s apartment building, helping Beth manage Jeremy’s care (which is more than a full time job), rotating on the night shifts, weighing in on medical decisions, making sure Beth doesn’t forget herself, and hauling Jer around San Francisco to his various appointments in the big RV. Driving and sitting are uncomfortable right now, so Jeremy gets to ride in style in the RV, where he can travel lying down, take naps between appointments, and have a snack. I told Jer’s friend that it absolutely tickles me to picture him going around SF (is there a more RV unfriendly city in the US?), finding parking, managing the hills, in that old RV. He replied dryly,”Well, the disabled parking permit helps.”
So what did I do in the face of all of this? I cooked, did laundry, walked the dog, watered plants, rubbed Jer’s sore hip, ran errands. I held Jer when he felt nauseous. I insisted that the nurses and technicians in the hospital sanitize their hands before treating Jer. I made calls to make sure that the CT scan taken at the hospital made it to Jer’s oncologist. I cooked some more, coming upon a granola recipe that Jer was particularly fond of, and given his nausea and weight loss, I was inspired to make multiple batches. It all seemed so insufficient, but it felt important to do something. I did manage to wrangle a little time to talk to Jer heart-to-heart. And I can tell you that my heart is broken.
Where things are at now: We’re hoping that the pump helps increase his quality of life. He is still receiving some chemo (in pill form) in the hopes that the cancer will respond (although he has not responded to any chemo so far). There are still 2 treatments he might try if he is strong enough: an intravenous radioactive isotope that Tia told me has had a “Lazurus effect” on some of her most dire cases and, if he is ever strong enough again, the bone marrow transplant. The isotope treatment would only be able to send his cancer into remission, but if it helped him gain strength and time, it might allow for the bone marrow transplant to take place, which could theoretically provide a cure. His oncologist is reluctant to use the isotope treatment because he has lost 2 patients from it who ended up with brain hemorrhaging. But Tia (who, I might add, is reviewing his oncologist’s promotion case) thinks it could be managed with vigilant monitoring of his platelet count.
At the same time, we all realize that these options are not great. Jer and Beth are going to start investigating hospice programs nearby. Jer is definitely walking a fine line right now, and we all recognize that another big setback could make even these remote possibilities of treatment recede into the background for good.
Thank you for all your loving and supportive messages. I know there isn’t a lot to say right now, but just knowing that you all care about us means the world right now.
Tags: body issues, changes, coping, courage, end-of-life, essay, gratitude, Jeremy, pain, support
Posted in End of Life | 2 Comments »
