Heaven Can Wait – Death by Cancer

IMG_2497If you haven’t stumbled upon it by now, check out the British Medical Journal’s blog piece by Dr. Richard Smith asserting that death by cancer is the way to go. I am astonished, and I’m not alone. Smith contrasts sudden death, death by dementia, death by organ failure and death by cancer and comes out in favor of the latter. (He conveniently excludes assisted suicide, which is the only situation in which death is in the hands of the patient.) Perhaps, as other bloggers have suggested, more time with end stage cancer patients, seeing first hand what living with cancer looks like (never mind dying from it), would likely provide Smith with some much-needed perspective.

More

Advertisements

Self Care?

I dread even writing the words. I resist, deny, justify, ignore, and try to learn the lesson over and over again. I had lunch with a friend recently and we were talking about my trip to Italy. I shared my realization of how much work just caring for myself canbe – walking 2-3 hours a day, getting to my writing, cooking healthy food – that’s a full time job!

“You learned this before,” she says.

Of course, she’s right. In fact, I’ve learned it many times before. And I know I’m not alone in this. Raise your hand if you are POSITIVE you would put your oxygen mask on first when sitting next to a small child…. I think I would, but at the risk of watching my child pass out, I can’t say I’m certain. Thankfully we’re past that age. We’re getting to the age where it’s more likely he’ll have to put my mask on me.

Which begs the question: Why is self care so hard? Is it a male/female thing? A motherhood thing?Why is the line between self-care and selfish blurry? Why does caring for others come naturally, but caring for ourselves require reminders and negotiations and, sometimes, very loud wake-up calls? More

Welcome Back…

IMG_5260

Remember me?

I know, it’s been quite some time. Again. And to the extent that I believe in resolutions, I yet again resolve to keep this blog active. The truth is, I think about it daily, but life gets in the way sometimes. So here’s a quick update about life, and a deeply sincere hope that I will find the time to hang out here more often!

I have a sort of “bucket list.” I don’t really maintain it, I couldn’t even tell you what’s on it, but there are things that I want to do before I die. So I made the stars align and planned a six-week trip to Italy. Yes, Italy. Yes, six weeks. And each day I lived the dream. I rented an apartment in Verona – a city historic enough to interest me and small enough to let me write. My goal was to make serious progress on a manuscript that has been hanging over me for years. (Mission accomplished. It’s no where near done, but progress was made!) Verona was the perfect city. The historic district is small enough to be easily walked, the sites were magnificent, and when it was time to write I didn’t feel distracted by the multitude of tourist options.

I got to “live” there for a bit. More

Komen Shuts Down Other Opinions

from politico.com

Yesterday I wrote about my utter astonishment in the “Singing Mammogram” released by Komen. A quick read of Twitter, as well as comments on my blog, suggest I’m not alone. In fact, it would seem that enough people offered negative feedback on the YouTube page that Komen has turned off the comments.

As the president of another breast cancer organization, I readily recognize that not everyone will agree with me, or with our organization’s take on the issues. I know that there are many opinions. I also know that I’m pretty strong in stating mine. I don’t tell people that they were wrong, but rather that I disagree. I don’t eliminate opinions I disagree with. And I most certainly never, EVER, no matter how confrontational or oppositional a comment, fail to invite open discourse on my blog.

As amazed as I am that Komen approved such a demeaning and sexist video, I’m even more amazed that they have sought to avoid dialogue by simply ignoring the voices of anyone who doesn’t support them.

Is this really how a leading breast cancer organization should behave? How will shutting down our voices lead to “the cure?” What say you?

Dear Ms. Robach

An open letter to Good Morning America News Anchor and breast cancer “survivor,” 

Ms. Amy Robach

 

Dear Ms. Robach,

What a journey you have had recently. From what I read in the press, save the persistent chemobrain, you are feeling well. Congratulations! I am quite familiar with the challenges of treatment and surgery, and getting back to everyday life. It looks like nothing can hold you back!

It ends up we have quite a bit in common.

  • Like you, I was diagnosed young and on my first mammogram, when I was 35 years old.
  • Like you, I opted for bilateral mastectomy in hopes that my lobular disease might not occur in the healthy breast also. (You know, of course, that bilateral disease is most common in lobular breast cancer, which is what I have.)
  • Like you I underwent chemotherapy and tamoxifen (5 years was the standard back then).
  • Like you, chemobrain persists.

It seems we have some differences as well. More

An N of 1

Image

impglobal.org

The most recent roller coaster ride seems to be coming to an end, though that sounds remarkably like “famous last words” – never good!

For those keeping score, here’s the update:

About four months ago I started on my third-line treatment – everolimus and exemestane. I started the treatment with trepidation. After nearly three months it seemed, to me, that I wasn’t seeing the results I wanted. Tumor markers were rising (that’s not good) and the side effects weren’t great. So I started looking for “what’s next.” Time to look at my options – clinical trials.

More

When Faith Falters

faithFor as long as I can remember my primary identity has been grounded in Jewish community. From summer camp to youth group, that is where I first felt I belonged. So much so that I went on to minor in Judaic Studies in college and focus on Jewish Communal Service in graduate school. Most of my 25-year career has been spent serving the Jewish people, and I have always felt lucky for the chance.

While Jewish peoplehood and Jewish faith are not the same things, I’ve generally taken my faith for granted. I work in a synagogue, after all.

When I was first diagnosed with early-stage breast cancer I felt the warm embrace of both the Jewish people and the Jewish faith. My community could not have possibly been more supportive and I never bothered to think through the distinctions. My connection to them was synonymous with my connection to God. I was grateful for the many prayer groups across the county who held me close, to the strangers who would never know more than my name, but petitioned God on my behalf anyway. And our faith seemingly prevailed. Despite the unpleasantness of chemo and a long, long surgical recovery, I was “cured” and able to leave breast cancer behind me, stronger for the experience.

Today, as a metastatic patient from whom mortality cannot be hidden, I’m less sure. My faith’s teachings are admittedly vague on the subject on afterlife, favoring a focus on what we can and must do in this life over speculation about the next one. We have this time, it seems to say – make the most of it. Enjoy it, but do good things, too. Not because you’ll get credit for it later, but because it’s the right way to be. So after all these years of serving the Jewish community, of trying to do good things, what’s left? I understand I may not die of breast cancer, but I will unquestionably die with it. And as each treatment fails me, my faith is a bit more compromised.

Are God and heaven and hell just human constructs designed to make us feel better, safer, about the mystery that is dying? Are they real in the absence of evidence, in the same way that we can’t see or capture the wind? Or perhaps they exist only for those who have faith. I don’t believe my faith will heal me, as much as I wish it could. Wonderful, saintly people have died of illness, and evil people have lived long and prospered. It’s impossible for me to believe in an interventionist God in a world like that.

Ultimately I believe, with rare exceptions that range from Hitler to the Dalai Lama (yeah, don’t see those two in the same category very often, do you?), that we mostly try to be good, and we succeed and we fail and we go on. I have friends, mostly Christian, who urge me to have faith. I understand why – from their perspective faith is the key to heaven. From mine, if there is one, it is good deeds. And I guess I believe that actions do speak louder than words…

But it begs the question of faith. As the lives of some many fellow bloggers and twitter friends are prematurely stolen from us, as my own health falters, do I have faith?

I remember when my mother in law was diagnosed with mesothelioma. In the months before she died we would have long conversations of faith. She had, once, believed in life after death, and had a notion of it being good. As her death approached however, just when she probably needed it most, her faith was gone, or at least well masked. She came to believe in nothing. I’ve always hoped in her final days, when she no longer had the strength to talk on the phone, that she found what she needed.

Which has me wondering what I need. Would this path be easier if I were a true, unquestioning believer? Would I find comfort in “knowing” what to expect after I die? Perhaps, if I could ever really move from thinking to knowing, a move the skeptic in me is likely to never make. In the end, it always takes me back to the very beginning. Within hours of being diagnosed the first time my anger at what this would mean for my loved ones burst forth. Never mind me, I’ve done bad things in my life. We all have. But to make my loved ones suffer for my actions, the unanswerable question always remained: what could Zach, at the tender age of three, have done to deserve this. That, in the end, confounds my faith; I have not found a way to put my trust in an unjust God.

I figure I have lots of time yet to work this one out…

Third Line Therapy

Mphotoemories of another angst-filled day of sitting in bed waiting for the side effects of my first round of chemo playing tug-of-war with what I know must happen, I ask John to bring me my pills.

“The new ones?” he asks.

“I guess,” I grudgingly respond. Really, this is me? Really?

More

TRANGST

Image

We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.

And that is where I sit today…

More

The Measure of Time

CalendarLast week saw yet another CT scan and, unfortunately, some progression: albeit slowly, my cancer is growing again. And so I am now looking at my third-line treatment. I must admit, its all a little surreal. I was going to be that girl who got years on each successive therapy, denying to odds and beating down the doors of a ripe old age. Strike that – I AM going to be that girl, just not the way I planned.

More

Previous Older Entries Next Newer Entries

%d bloggers like this: