Posts Tagged ‘straight talk’

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 »

Impact

11.16.2012

One of my children has faced some serious challenges that, I believe and some of the experts we have talked to concur, have been exacerbated by our family’s two year plus cancer crisis.

Out of respect for my children’s privacy I will not name the child or the problem. But I will share with you the heartbreak I feel as a mother, knowing the parenting opportunities I missed out of necessity of saving my own life.

I know what you are thinking. You want to reassure me. you want to talk me out of my maternal guilt. You want to let me know that I did what I had to do, which is undoubtedly true.

But it does not change this, yet another brutal reality of cancer. As with other uncomfortable truths, it is one I feel compelled to share.

Nobody can replace a parent’s attention and love. But if you know a family with a parent with cancer, please reach out to support their children too.

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Not Normal

09.30.2012

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.

 

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Private Body/Medical Body

05.07.2012

I haven’t read Susan Gubar’s new memoir about her terminal ovarian cancer yet. The famous literary critic explained that she was motivated, in part, by a problem that Virginia Woolf’s generation of women writers had failed to solve: telling the truth about the experiences of a woman’s body.

I resonate with this motivation. As I explained in an early blog post, I have always found the silences around our bodies to be a strange form of culturally mandated dissociation. We all have bodies. They all have feelings and experiences, but we are somehow raised that it is impolite to discuss them.

The loneliest moments I have ever experienced have been in unanticipated, unrecognizable corporeal suffering. Somehow, putting words to these sensations and having others recognize them makes me feel less alone by acknowledging an important and essential aspect of our common humanity.

So here I am, having another intensely bodily experience. After two years and seven months since my diagnosis, my cancer treatment is coming to an end. My Medical Body is becoming a Private Body again.

Let me rewind a bit for you and explain. Early on, it became clear that Medical Bodies are not granted the normal respect granted to healthy bodies.

During my first diagnosis meeting with a team of doctors and residents, I heard the information about my disease: staging, tumor type, treatment plan. Needless to say, I was in shock.

Then the team wanted to “palpate my tumor.” I was to remove my hospital gown, stripped from the waist up, and sit on the exam table while, one by one, the doctors basically felt me up. I caught eyes with my husband, as we were both struck by the new bizarro world we had entered. This activity would have seemed inappropriate and lacking dignity just days ago. Now I was expected to endure this as a procedure, allowing the doctors to individually assess the location and size of the cancer.

This was only the first of many insults to my body. They are too numerous to list, but I will name a few to give you a flavor.

  The prolonged pain after my port placement that my surgeon responded to as “no big deal.” (I later fired her.)
•  The way some nurses abruptly flip on lights in the wee hours during a hospital stay so that they can “take your vitals.”
•  The way your bald head causes some cold-hearted people to shun you because you represent disease and mortality.
•  The way some chemo nurses will “push” your infusion at the end of their shift so they can go home, even though it hurts.
•  The way strangers simply appear without introduction when you are half naked on the radiation table.

 

As my reconstruction has progressed, the procedures have gotten more intimate.

Really. It is  not possible to be any more flat-chested than this.

First, I went from my truly flat-chested body to one with some roundness. Then, I switched out hard tissue expanders for softer implants.

Now, the most intimate surgery of all is on deck:

Nipple reconstruction.

It is so so private to talk about nipples. I can barely stand it.

But the awkwardness also marks a welcome return.

My Medical Body is becoming a Private Body again. And I am so thankful for that.

 

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Posted in Survivorship, Treatment | 24 Comments »

Reconstruction Q & A with Uneasy Pink

01.08.2012

I have had a hard time writing about reconstruction. It doesn’t quite fit the heroic cancer narrative of kicking ass and taking names. It’s more personal and intimate. Reconstruction serves quite literally to rebuild not to cure, making it awkward for an audience.

Nonetheless, I have had some interest bubble up through my various connections about what I am up to and what it is like. I asked my friend and fellow blogger Katie from Uneasy Pink to generate some questions for me to answer on the topic. So, here we go…

How did you chose from the alternatives?

I had delayed reconstruction, largely because of my radiation. Radiation damages skin and muscle on your chest, thereby completely altering your reconstruction options. My doctors uniformly advised me against starting reconstruction until 12-18 months after radiation because of the increased potential for complications with both my medical treatment and the cosmetic result.

This is my attempt at making a decision-tree illustrating reconstruction options.
A number of choices were not available to me because of the specifics of my case.

Once I began reconstruction 15 months after radiation, my goal was the best cosmetic outcome with the least chance of complications or damage.

Women undergoing breast reconstruction can choose broadly between tissue reconstruction and implant reconstruction. Because of my radiation treatment and body fat content, I was not a candidate for tissue reconstruction. (You can read more about these options here. There is also a newer kind of tissue reconstruction that I did not have access to, although I would likely be a candidate for it.)

Among the options for implant reconstruction, I chose bilateral lat flaps with tissue expanders and silicon implants.

Lat flaps involve taking some latissimus dorsi muscle from the back and moving it to the chest to create a shelf for the breast implant.

Tissue expanders work to stretch skin to make room for saline or silicon implants.

Because of my radiation, I had to do lat flaps on the right side. The skin was too damaged to just place tissue expanders and implants under the chest muscle (the alternative). I could have opted to do the flap on one side and the expanders under muscle on the other, but it would have compromised the cosmetic result because of the inherent asymmetry. Although I had some hesitation around the lat flaps, my doctor reassured me that they take a very small amount of muscle to make the shelf for the implant.

I chose the silicon implant because it was lighter and more natural feeling. My surgeon reassured me about the quality of the silicon implants he uses. The saline also risked dimpling and sloshing when I run.

What it have the surgeries been like for you?

I had never had surgery before I had cancer. Through all the treatments I underwent as a cancer patient, I had the easiest time with surgery. My tolerance for anesthesia and overall fitness seem to play into this.

That being said, having surgery after chemo as I did with my mastectomies was a whole different ballgame compared having surgery when I felt fit. Although the first of my reconstructive surgeries was the most difficult (it involved the lat flap construction and tissue expander placement), my suffering paled in comparison to what I experienced with my mastectomies. I was in the hospital for four days and had 6 drains in all. Definitely not fun. But waking up with an A cup nearly brought tears to my eyes.

In what ways has it met/exceeded/fallen below your expectations?

I would say that overall, so far, this processes has met or exceeded my expectation. The first surgery was tough, but I regained mobility quickly. Interestingly, I had so much scarring from radiation that my mobility actually improved since my surgeon removed significant cording from my armpit.

The one part I did not anticipate as fully was how uncomfortable the tissue expanders would be. The tissue expanders go in during the first surgery and are little bags that get injected with saline little by little to stretch out the skin. Once I got above a B cup (about 300 ml on my body), I was quite uncomfortable. My final fill went up to 400 ml, so that was over a month of living with that discomfort.

How has it impacted you physically, as far as strength, exercise and flexibility go?

I am athletic and sensitive to my body, but I have not noticed any difficulties with the lat flaps. I did a lot of weight training before the surgery. Whether this just helped me psychologically or provided actual support, I do not know. But once I healed from that, I was able to resume my training with my regular weights. This surprised me because I was prepared for an adjustment period. As I said, my range of motion actually improved because of the improvements with the scarring.

How about the psychology of it?

For me, this has been the best part. Not having to strategize my neckline with every outfit. Feeling like I can have some lovely amnesia about everything I went through with the treatment. I know fully that these are not fully functional breasts –– they do not have the sensation of real breasts –– I feel more like myself with them.

I knit this sweater for myself to wear after surgery. I call it “Welcome back, girls.”

If a person is going to do this surgery, what can she realistically expect for recovery time?

“This surgery” is really three surgeries. Luckily they get progressively easier. The first surgery is the lat flap and tissue expander placement. It is the toughest, with 2-3 weeks of really being out, and another 3 weeks of limited activity. The follow-up fills also require appointments and continual adjustments.

The second surgery involved switching out the tissue expanders for the implants. The whole thing took less than an hour. There were no drains involved, and I was off of pain medication within a week’s time. My physical activity is restricted for four weeks.

I will report on the final surgery (nipple reconstruction) once it’s over. But the surgeon assures me that this will be the easiest procedure of the three.

What’s one thing the doctor didn’t tell you that a woman facing the surgery should know?

My doctor was pretty frank with me, but I think I still underestimated the discomfort of the expanders. By the time my second surgery was on the horizon, I felt 9 months pregnant. I was ready to get those puppies out of me.

UPDATE: My friend Sarah found an actual decision chart in the back of a book by a surgeon in the UK. There is another procedure that uses tissue from the buttocks to make a new breast!

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Posted in Survivorship | 20 Comments »