Friday, December 17, 2010

Hitch

Journalist and author Christopher Hitchens was diagnosed with esophageal cancer in June of this year and since September, he has been writing his monthly column in Vanity Fair about his experience. These columns have been endlessly thought provoking and relatable for me. I have read and re-read each one, with a deep sense that his words and voice have captured a side of my own cancer experience that I've been unable or unwilling to articulate: the cynical and sardonic side.

I have always found Hitchens' work of the non-cancer variety interesting, enriching, and most importantly, challenging. It occurred to me at some point during college that his nickname, Hitch, means to raise by pulling or jerking, which is sort of the perfect description of what his writing does for me. Never has that felt more personal or real for me than in his recent columns on cancer. At times, he's abrupt and startling, but after reading them, I feel raised up.

There is so much in these four columns that I want to talk about, extrapolate upon, relate to my own experience, that I fear this post could go on for the length of a bible (a comparison that would no doubt upset Hitchens) so I have tried to be selective in drawing out some favorite themes.

In Tumortown Hitchens talks about wading through the sheer number of choices in conventional and alternative cancer treatments. Further in, he talks about what it feels like to go through the rollercoaster of emotions around participating in clinical trials and beginning new treatments, when some are accessible and some are not, when some work out and some don't, and when some offer you the chance to serve humanity through participating, describing that unique bitterness when that opportunity is taken away. I originally read this piece shortly after my hopes of participating in a clinical trial of a promising new immunotherapy approach had been crushed. I felt like it was a sad summary of the emotional circus that the experience had been. Reading it again, now that I'm into my SGN-35 treatment cycles, (going smoothly thus far) I am reminded again that new and innovative options are blessings and burdens.

In his column entitled, Miss Manners and the Big "C," Hitchens tells the story of a woman at his book signing, over-sharing about her cousin's cancer, which was a different type and stage than Hitchens', and ended in painful death. She concludes the agonizing exchange by saying, "'Anyway, I just wanted you to know that I understand exactly what you are going through.'" This moment felt all too-familiar to me. After describing the encounter, Hitchens goes on to wonder if there shouldn't be "a short handbook of cancer etiquette." He writes, "One almost develops a kind of elitism about the uniqueness of one’s own personal disorder. So, if your own first- or secondhand tale is about some other organs, you might want to consider telling it sparingly, or at least more selectively. This suggestion applies whether the story is intensely depressing and lowering to the spirit—see above—or whether it is intended to convey uplift and optimism: 'My grandmother was diagnosed with terminal melanoma of the G-spot and they just about gave up on her. But she hung in there and took huge doses of chemotherapy and radiation at the same time, and the last postcard we had was from her at the top of Mount Everest.' Once again, your narrative may fail to grip if you haven’t taken any care to find out how well or badly your audience member is faring (or feeling)."

This feels pretty spot-on. I feel fortunate that those closest to me, aware of both my illness, but much more importantly, the rest of me, and themselves largely gifted with excellent social graces, tend to say just the right thing most of the time. It's usually the more random folks I interact with - the person at the checkout counter, stranger on the metro, random distant colleague, friend-of-a-friend-of-a-friend etc, who think that a scarf on my bald head is an invitation to discuss my cancer with me. In those moments, I badly wish there was a handbook of cancer etiquette outlining the best way to handle a given situation. (Though, until a book is published, I highly recommend this article from Cure Magazine, by Leslie Starsoneck, The Rules.)

In another post, Unanswerable Prayers Hitchens (a famously avowed atheist) weighs the complexities of those praying for him to live, praying for him to suffer and the role faith plays in any of it. I think that he poses many good questions without answering them, which feels consistent with my own theological approach to the power of prayer as well. I have lots of questions about it and fewer answers. As a brief preview to a very soon-to-debut post here on SWHAW, I will say that while there's no question that Christopher Hitchens and I have very different understandings of the role of God in our lives, we do have an extremely similar understanding of the direct role God has in our cancer diagnosis.

I could go on and on about all the large and small ways that Hitchens sheds light on some of the universals of the cancer experience, but I think I'd rather hear some of your thoughts on his columns when you read them, and hope that you'll share your views here in the comments. I hope that Christopher Hitchens experienced as much catharsis and healing when he wrote his insightful articles as I experienced when I read them.

Thursday, December 9, 2010

Experiment

It's weird to feel excited about cancer treatment, but here I sit, excited to start SGN-35 tomorrow. Up until this past year, my treatments had been conventional - following the same course of action that's been prescribed for Hodgkin's patients for decades. But with a rare second Hodgkin's relapse, my treatment plan ventured down a road less traveled.

Now, as I find myself preparing to begin a regiment that is so new that it's still being finalized and has yet to be fully FDA approved, I'm feeling a lot of different things. I'm a bit excited, to be one of the recipients of something so innovative, and to have my case be a part of something that will hopefully prove so essential in changing the conventional course of treatment for Hodgkin's. I'm a little nervous, to be the first person at the Northwestern clinic to receive this protocol, with the staff learning it as we go, unable to anticipate reactions or side-effects from experience. Above all, I'm grateful: for the access to this drug afforded to me by my doctor who fought for me to get it and the privilege that comes from being treated at such world-class institutions.

The phase II findings on SGN-35, which were presented earlier this week at the American Society of Hemotogy annual meeting, have been making major waves in the oncology world. Since my last post about the drug two weeks ago, there's been an explosion of new articles and blog posts about it, including in Bloomberg, Pharmesuetical Business Review, The San Bernardino Sun, and a series of shorter posts that offer interesting insight into the timeline of the drug's development on The Medical News, just to offer you a sampling.

I'll be in Chicago for just 48 hours to receive this first treatment, returning to Chicago every three weeks through January.

Friday, November 26, 2010

Prevention v. Treatment

I take issue with the cancer narrative in this country. Funding, research and the entirety of the national focus seems to be on treatment and survivorship rather than prevention. I believe that is a serious and dangerous problem.

With no offense intended at those cancer patients and their supporters who feel empowered by pink ribbons and yogurt lids, marches and walks, it's just not my jam. I bristle at the slogan-y, soundbite-y nature of the cancer world, and shudder when I see advertisements for what feel to me like the cancer survivorship cottage industry that's not benefiting anyone but corporations. I've been giving why I feel that way a great deal of thought, during the recent weeks.

I have become very interested in the prevention side of cancer for explicitly self-interested reasons. I am trying to slow the growth of my own cancer in order to buy myself more time on this earth: it doesn't get more self-interested that that. But I also have been in a distinct cancer-oriented mindset for the past few years, and it has shaped my world view. Much of this view is coming from the gaze of a person who has this disease, but doesn't know where it comes from. Having a type of cancer with an unknown point of origin deeply impacts my orientation: I seek causes everywhere, in everything. The sources of cancer are ever-present for me, and therefore, my cancer experience is inevitably oriented toward understanding how cancer can be prevented. My view of this situation is also colored by my perception, based on anecdotal and personal experience, backed up by national statistics, that rates of cancer diagnoses are continuing to climb in every single population. It seems logical that the causes are, at least partially, man-made.

I can understand how treating a problem is easier than preventing one. For an individual and collective, a diagnosis is concrete; having a poster child in the form of someone you know, or someone you can relate to, galvanizes. But this treatment-orientation feels more nefarious when I think about all the ways that it is entrenched by the approach of corporations and our country's medical system (and the two are linked, and even interchangeable in terrifying ways, which really warrants it's own post another time).

To me, the heart of the issue is this: the same corporations that give donations to research a cure for cancer, are causing it, by putting hormones in their yogurt, stain-blocking chemicals on their clothing, carcinogenic ingredients in their beauty products, and saturated fats in their foods. I have come to see clearly that causing the problem, then profiting off of your commitment to contribute to solving the problem (it's well documented that people are more likely to buy a product with the pink ribbon on it) is a terrible joke being played on all of us consumers, and a lethal atrocity being committed against people with cancer.

Even worse than corporate America using suvivorship to profit, I believe that not only does our modern health care system not focus on prevention, it even perpetuates the causes of illness. There have been countless times when I have been told that "there's nothing I can do" during treatment to help spur my healing process, when of course, there are myriad options for helping to slow cancer growth and foster healing in the form of herbs, vitamins, nutrition, specific exercises and therapies, etc. And ways to counter-balance toxic therapies administered for cancer that are not a part of any standard treatment protocol. I have had to seek all of these out on my own. They are not a part of any of the three teaching hospital-associated "comprehensive" cancer clinics I have been treated at. Treatment, with zero attention paid to prevention. And then there are the more blatant ways cancer is made worse by western medical treatment.

Recently, at Georgetown University Hospital, I was laying in bed on day three of my four-day treatment cycle, I was interrupted by guy who identified himself as a tech with a Geiger counter-ish device, measuring something outside of, then in my room. He explained that a woman in the room above mine was getting radiation therapy and they were checking "for the sake of appeasing the regulators" for any leakage, just as a precaution. Well there was leaking radiation, it turned out, detected less than a foot from my head. I immediately asked to change rooms, and expressed my deep upset at being exposed to additional toxicity during treatment. While the appropriate response - moving me and my belongings - was immediately taken, I just couldn't quite get anyone to really hear my concern: that I am a patient with an unknown cancer source, being exposed to an unnecessary amount of toxicity while specifically being here for treatment for the very thing that they were causing/perpetuating with an improper facility that allowed radiation leakage. This disappointing (shocking, even) situation speaks to the lens through which our western medical culture views cancer. Cancer is an illness treated with a complex and costly system. There's not even a percentage of this energy and money devoted to prevention.

Before becoming sick, I never really thought about all of the habits in my life that may have contributed to feeding cancer cells in my body. Microwaving plastic, eating pesticides on fruits and vegetables, inhaling paint fumes, consuming growth hormones in dairy and meat, taking medications and using beauty products without researching their carcinogenic effects, cleaning my home with harmful chemicals, sitting too close to TV and computer screens, not using headsets with cell phones, resting my laptop on my lap: and a million other small and large habits that may or may not have resulted in my or anyone else's cancer.

I have come to see carcinogens the way that John Nash sees numbers - in everything, and everywhere, and sometimes irrationally. While I accept that I am never going to find the magic ingredient to preventing or curing my own disease, I feel that I owe it to myself and the people I love who aren't sick, to try to be a conscious consumer in every way, and avoid financially or socially contributing to this terrifying cycle.

I am hopeful that the causes of cancer will receive more focus in the future. I'm seeing that for the first time in Washington, bills addressing food safety and the ingredients in cosmetics are gaining some traction. Organizations like Mom's Rising are waging full-fledged campaigns on product safety, and the slow, organic and local food movements are growing.

Is this the only reason why I take issue with the cancer culture and language of survivorship in this country? No. Some of it stems from my discomfort in the language of victimization and my own mishugas with owning cancer as a part of my identity, for better and mostly worse. But it's my strong hope that as I continue to define what having this disease means to me, I will be able to use the soapbox given to cancer patients and survivors in our culture to shed more light on the ways that we can all try to prevent cancer, for ourselves and for each other.

Monday, November 22, 2010

SGN 35

I had scans last week to see how my most recent cycles of chemotherapy had worked, and they were basically static. There had been two spots with small nodes that are cancerous on the last scan - one in my chest, one near my liver - that had shrunk just the tiniest amount after my most recent cycle of chemotherapy. But, everything looks about the same.

It's disappointing, but not shocking. I am sad, but I was significantly more panicky when I didn't yet know, and was waiting for information. I feel better now that there's some semblance of a plan.

I spoke with my oncologist in Chicago, and we advanced a conversation we had already begun about the options in the event of this type of result. One choice was to proceed directly to the transplant, but ideally, I would be in a complete remission going in, in order to minimize the disease burden on the donor cells. So my doctor has suggested a "bridge" to the transplant, in the form of one more cycle of therapy: a brand new drug called
SGN 35.

SGN 35 is an antibody that attacks only the unique Hodgkin's cells. This means that it is minimally toxic to the rest of my body, and that it will not be an aggressive therapy. It's administered once every three weeks, and in theory, I should feel very well between treatments.

It's so new that it's not yet FDA approved because trials are just concluding. But my oncologist has gotten permission for me to get the therapy on what's known as "a compassionate use" basis. The drug is administered one time every three weeks. I will have a minimum of three doses, depending on how well it works. It will be administered in Chicago, but if all goes as planned, I will be able to go back and forth between Chicago and DC and continue more-or-less as normal. Here's some
additional information about how the drug works from a blog that includes some helpful links. I've also found a press release announcing a paper and presentation on the drug which I think puts things into easily-understood terms.

So it looks like my plan has changed again, and the transplant has been delayed again. I am wrapping my head around it all, but truthfully, I am mainly experiencing relief to 1) have a plan again - even if it's just for the short term and 2) have a couple of months when I'll, at least theoretically, feel better. I've spent the last months feeling sick, trying to simultaneously function normally, and cope with only being able to plan for a week in advance. Few things frustrate me more.

Seems safe to say that for at least the next 10 weeks, I will be coming to Chicago every three weeks for the treatment. I am hopeful that I will be able to start this regiment soon, perhaps even while I'm home for Thanksgiving. As soon as everything is set, I will let you know. I'm deeply looking forward to getting some time at home and give thanks for everything I have to be grateful for.

Wednesday, November 3, 2010

Test Results

I'm glad to report that following cycle 3 of IVEG chemotherapy, I am feeling pretty well and back at work and life. I'm also busy trying to make plans for the next steps. After cycle 2 of IVEG, I repeated PET/CT scans, the only measure of treatment success or failure with Hodgkin's treatment. My tests showed that there is significant improvement (a partial remission) but not complete success. As we move toward the goal of beginning the transplant, we are planning to repeat the tests in a couple of weeks, hoping that cycle 3 results in more progress. Depending on those results, we'll either make plans to proceed to the transplant (the exact date is of course, dependent on the donor's availability) or do some additional short course of therapy before the transplant. While it's anxiety-inducing to not yet have firm plans, (anxiety further fueled by the election results) I am hopeful that those plans will come together in the coming weeks.

Monday, October 18, 2010

Community

During my senior year of high school, I took an English course entitled Great Books. We read some incredibly thought provoking books - primarily western philosophy - books that shape our politics and culture. We discussed them with the passion and zeal of 18 year-olds preparing for the idealised intellectualism of college life. Throughout the year, we knew that we were building up to the course's locally-famous final project: a presentation on the meaning life.
One day, early in the year, we were discussing Voltaire's
Candide in class and specifically discussing that core class question - the meaning and purpose of life. We must have been talking about the specific issue of isolation, when, without much thought, I blurted out a question that would come to be central to my definition of the meaning of my life for my final project and since: "if you lived your whole life, completely isolated and alone without ever interacting with another person, would your life have any meaning at all?" It was my variation on the classic "what is the sound of a tree falling in the forest?" or "what is the sound of one hand clapping?" questions. At the root of each is the essential question: are our lives of any consequence if we do not share our experiences and selves with others?
When I presented on my meaning of life project at the end of that year, I talked about Dante, Voltaire, Machiavelli, Frankl (who has obviously stuck with me) and all the other philosophers and thinkers we had read who had offered their own guides to creating a meaningful life. Using the Little Prince's home planet from the Antoine de Saint-Exupéry classic as my metaphor, with an accompanying "self portrait" that I had painted, I explained that my project centered around one question: does a life has any meaning at all, if lived in isolation. And my answer then was the same at 18 as it is now: our life's meaning is defined by the people we share it with.
And so, though I haven't always been fully conscious of it, building community is the purpose of my life. Professionally and personally, intellectually and emotionally, it is the locus of my meaning. I'm incredibly lucky that I get to do it as my day job, and hopefully will for many years as a Rabbi.
With all the terrible things that have come from my cancer experience, I can say definitively that I am never more acutely aware of this community-building orientation as when I am in treatment. I am so well supported and loved, that it is literally healing. I feel physically better after spending time with friends and family. I can never express enough gratitude for the affirmative experience of being surrounded by support, and for the constant reminder of the power of community.
I'll be back at Georgetown University Hospital on the 2nd floor of the Bles building, for cycle three of IVEG chemo therapy from October 25-28, and will hopefully know more about plans for the transplant in the next couple of weeks. I will report any news here.

Tuesday, September 21, 2010

Knowns and Unknowns

"There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know." - Donald Rumsfeld

I know that seeing a quote from Donald Rumsfeld on my blog might make you wonder just how much mind-altering medication they've put me on. But his explanation of knowns, unknowns, and unknowns that are unknown, when removed from the context of him obfuscating US intelligence in the Middle East, is actually a helpful frame for capturing my thoughts today. It's day 11 of my first 21-day cycle of IVEG. At this half-way point, I think it's safe to say that there are now some important things I know for the coming months (I have at least two more cycles of this treatment scheduled) and still some significant unknowns.
What I know:
My four day hospital stay wasn't too brutal - I had lots of great company (thanks to friends and my fantastic sister, Becky!) and was so carefully monitored and medicated, that it all went smoothly. The first few days out of the hospital were rough as I experienced about every unpleasant side effect in the book. But I began feeling better this weekend and was glad to be able to celebrate and observe Rosh Hashanah and Yom Kippur. More than anything, I'm just grateful to know more of what to expect the next time around. Being able to plan ahead for when I'll need support, when I can work, when I should rest, which prescriptions to refill when, etc. makes the whole experience more tolerable.
What I don't know:
Some side effects will begin in nadir between days 10 and 14 when I'll likely be neutropenic and my immune system will be most vulnerable. Amongst these known unknown side effects that I am most anxious about is the huge unknown of whether I'm going to lose all my hair this week. You see, as I mentioned in my previous post, this chemo regiment is a combination of drugs I've been given before. Given the mixed hair-loss results from those experiences, I don't know what to expect for the next few days, and after all this time, I'm still not sure how to best prepare myself.
What I don't know I don't know:
Then there are the unknown unknowns. If you have ideas on how to prepare for these, I'd welcome suggestions. In the meantime, I find myself continuing to reflect on all of this during these recent days of awe in the Jewish calendar - a reminder of how significant and insignificant we are and how much and how little we can possibly understand about what happens to us, around us, because of us.

Thursday, September 9, 2010

Coming Out of The Holding Pattern

I first learned the concept of "a holding pattern" while flying into O'Hare. Due to a lack of runway space, or gates, we'd circle above the airport, waiting for when we'd be taken out of a holding pattern and permitted to land. I have found the term useful to describe my medical situation over the past several months. While I waited to find out the availability and possibility of a promising clinical trial, I made the decision to put my current treatment plan on hold, taking advantage of my remission. With that aspect of my life in a holding pattern, I was able to plunge swiftly and fully ahead with other opportunities and was thrilled and grateful to do so.
But unfortunately, like so often at O'Hare, my plan(e) has been diverted. My most recent scans showed an aggressive return in some new places and some where the cancer has been before. I immediately talked with my oncologists in Chicago and Washington, who walked me through the course of chemotherapy treatment that they and I agreed is the best of my available options. It is IVEG, which is not only an apt description of my new dietary preferences as well as my recreational habits post-chemo, but also a hybrid of three drugs that I have had before in different regiments: Gemcitabine, Ifosfamide, Navelbine (also known as Vinorelbine, hence the "V"). Evidently, the "E" doesn't mean anything.
The plan is to do 2 cycles, and then re-stage with scans. If I am in remission, then we will do an additional cycle, then hopefully proceed straight into the transplant. It is a three-week cycle, with one 4-day treatment at the beginning. Needing to move quickly, but wanting the opportunity to celebrate Rosh Hashanah, I am beginning cycle 1 tomorrow Friday, September 10. If things go as planned, I will be in the hospital on Friday through Monday or Tuesday. I will be on the 2nd floor of the Bles building at Georgetown University Hospital starting Friday and would love visitors. Feel free to call or email me, or my sister.
Shanah Tovah to those of you celebrating the new year today.

Saturday, September 4, 2010

Top 10 Books for Cancer Patients

Continuing my list-making into these early days of September, here is my list of the best books for cancer patients and their supporters. The list is biased toward practical lifestyle advice over individual narratives, and of course, unique to my own personal situation. Still, I hope that my particular list has some universal application.

Top 10 Books for Cancer Patients and Their Supporters

10. It's Not About the Bike by Lance Armstrong
One of the first books I read after diagnosis, Lance's book didn't move me as much as some other narratives have. And it's hard for me to look at his cancer experience in a vacuum (I mean, he dated an Olsen twin - that's sorta antithetical to the kind of role model that I'm looking for). Still, as author Kairol Rosenthal writes, "Since Lance's balls and bike became public, we no longer speak about cancer in hushed tones." Lance Armstrong's contribution to movement building for cancer education, awareness, research, and treatment has been critical to all our well-being. And his LiveStrong Foundation and network can trace much of their success to the popularity of his book.
9. Kitchen Table Wisdom by Rachel Naomi Remen
This book was a gift from my dad's friend Arnie, and has been a very powerful resource as I continue to explore the many definitions and means of healing.
8. Illness as Metaphor by Susan Sontag
In a subtle way, Illness As Metaphor provided my foundation of understanding of how my illness is perceived by others, and has given me some context for explaining why I find the romanticized cancer gaze and narrative most prevalent in our culture, so personally troubling. It was also a really well-written, informative book.
7. Crazy, Sexy, Cancer Tips by Kris Carr
Full disclosure: I haven't read all of Crazy, Sexy, Cancer, or seen the entire film, or read every post on Kris Carr's blog. But Crazy, Sexy, Cancer seemed worthy of the list because I like her message and means, and deeply admire her spirit and approach. Most importantly, Crazy, Sexy, Cancer is a source that many people deeply relate to, especially younger women.
My friend Barbara gave me this book by former MTV VJ, actress and model Karen Duffy, when I was first diagnosed. It was the first book I read about a young woman facing a serious illness, who handled it with her own brand of humor and dignity and it made me feel hopeful that I could do the same.
5. Life Over Cancer by Dr. Keith Block
Dr. Block created the Block program for fighting cancer for people who are at different places along the cancer continuum. It's a comprehensive plan that patients can implement themselves, incorporating holistic principles without asking patients to chose between "conventional treatment" and other approaches. You don't have to follow the plan by rote - you can glean some of the great lessons to incorporate into your own plan. I have found it valuable in this way.
4. Everything Changes by Kairol Rosenthal
I've only just finished this book, which has been regularly recommended since my diagnosis but I hadn't picked up. It is #4 on this list, but in terms of books that provided emotional catharsis, it is my #1. There were several times in the process of reading it that I had the surreal feeling that somehow Rosenthal had read my journal, and had to confirm that I was not the subject of a particular case she was writing about. That is precisely why her book is such a gift: I heard my own voice and my own experiences reflected in so many different aspects of her book that it made me feel less lonely, understood, heard. That's a pretty big lift for a book, but time and again, young people with cancer express just that after they read Everything Changes.
3. Cancer as a Turning Point by Lawrence Lashan
A wise woman has often said to me during these past few years, that, for better or worse, I will never go back to being the person I was before I had cancer. That is an essential truth of this experience which is mainly about the emotional and mental consequences. Cancer as a Turning Point focuses on these aspects of health. I think this book is one of the best for caregivers and loved ones, as well as for cancer patients, and is one of the best resources for utilizing the mind-body connection to fight cancer.
2. Choices In Healing by Michael Lerner
One of the worst moments in my cancer journey was when I asked my oncologist at GW what else I could be doing to make myself healthier besides chemotherapy and radiation, and he said, "nothing." This book is the antidote to the sting of his reply. It's the foundation for alternative and supplemental healing approaches and choices.
1. Anti-Cancer by Dr. David Servan-Schreiber
I stumbled upon this book when I was at Borders buying a gift. There it was - starring at me from a shelf. I picked it up, began reading and felt like it was fate. I have used it somewhat like a textbook since then, trying to outline a blueprint for the lifestyle changes that likely reduce risk of cancer and slow it's growth. Anti-Cancer was a gateway to all of the other resources I have explored since, partially by dint of being the first book that introduced these topics to me, but largely because it is such a perfect explanation of complex science, distilled for lay-people.

Saturday, August 21, 2010

Elissa's Top 10 Resources for Young Adult Cancer Patients and Survivors

I love a good list. I am a list-maker by nature, and have become more of one since my first cancer diagnosis. I think it helps me create order in an often-chaotic situation. Lists also give me an excuse to use post-it notes, my favorite office supply product.
After coping with cancer for nearly 4 years, I am still constantly discovering new resources. But given that I want my blog to be a useful resource in itself, I decided to create this top-ten list of resources available to young cancer patients and survivors. (And a top-ten list of cancer-related books are coming soon!)
These books, websites, places, spaces and organizations, will hopefully help someone else have all the information that it's taken me a few years to gather, in one place.

Top 10 Resources for Young Adult Cancer Patients and Survivors

First Descents, created by 18 year old professional kayaker Brad Ludden, is an organization that helps young adults cope with the emotional effects of cancer and empowers them to regain control of their lives by experiencing outdoor adventure therapy through kayaking, rock climbing and other outdoor adventure sports. Their programs are free and while I have yet to participate, I have heard amazing things about them from other survivors.
This organization was founded by Jonny Imerman who was 26 years old when he was diagnosed with cancer and felt isolated. He created Imerman Angels, an organization that matches individuals coping with cancer, with a survivor who has a lot in common with them - their cancer type, age, gender - so that they have someone to relate to and someone who can illuminate their path ahead. It's a brilliant concept that's benefited many. When I was in remission, I signed up to be a mentor and recently was matched to another young woman, but they didn't want to connect us when they'd heard I had relapsed because they didn't want to freak her out. Which freaked me out. Still, they're a highly recommended resource.
8. I2Y
I'm Too Young for This! is a very comprehensive website/support system that can provide information on everything from support groups and networking events in your area, to financial resources and much more. I have to admit that their branding always seems too edgy/angry for me. But they are clearly targeting a particular audience and I appreciate their goals. This has been the number-one resource for many of my fellow young cancer patients, and they provide some in-person equivalents to the online community that I have found elsewhere.
Cinco Vidas Inc. was founded by Britta Aragon, someone who I've gotten to know a bit through the young adult survivor community. The site provides information to help consumers make smart commercial purchases. Everyone can benefit from this site - those living with cancer and those trying to avoid it. What sold me most was one item in particular - the Ingredients to Avoid card. I printed it out, keep it in my wallet, and use it when I'm buying anything that's going on my skin, used in cleaning my home, or coming anywhere near my food. It's an easy and simple educational tool that I hope has made a difference for me and might make a difference for you, too.
Now a part of the Livestrong Network, Lance Armstrong's amazing gift to the world and itself an invaluable resource, Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility. When I was diagnosed at the age of 23 I could not believe that my doctors had NO answers to my very serious questions about how treatment would impact my fertility. In fact, those early experiences first opened my eyes to the reality that young adults experience cancer differently then older and much younger individuals, and that there is a tragic gap in research and information available for this age group. No doctor, nurse, social worker or any trained professional could answer any of my questions before I found the amazing people at Fertile Hope. My debt of gratitude is enormous to them, and I have told every doctor I've encountered since, to please look to them as a resource so that the patients after me don't have to experience my despair at the lack of information around this critically important issue.
While not all of the posts on this blog are cancer-related, let alone relate to my cancer experience, several posts over the past few years have been like a hand reaching into stormy waters and pulling me out. They left me crying, laughing, and consistently made me feel understood. It's compelling reading for anyone, and required reading for people trying to find out what "wellness" means to them.
The Ulman Cancer Fund for Young Adults was funded by Doug Ulman, a young survivor. The goal of the fund is to provide comprehensive resources for young adults facing cancer. They also support and provide some infrastructure for Young Adult Cancer Survivors (YACS) groups which are beginning to emerge in many cities, including Washington DC.
The Smith Farm is a center for the healing arts. They provide classes, workshops and community space for integrative and healing arts therapies. I have only attended several sessions, but am amazed and excited by the offerings at Smith Farm and feel so fortunate to live mere blocks from one of only two centers nation-wide quite like this one. I learned about the Smith Farm from my friend Jackie, who worked on prostate cancer prevention here in DC. We went together to hear a lecture from Michael Lerner, the founder of Commonweal and author of Choices in Healing. His lecture was a life-changing experience (as was my later coincidental encounter with him which was a continuation of the extraordinary experience) that gave context to the many disparate theories and bits of information that have informed my ever-evolving philosophy on healing.
Planet Cancer was the clear front runner here, for good reason. While some of these other resources are arguably more organized and offer a wider variety of services, this is the Elissa-specific list, and Planet Cancer has provided what I've needed most in the way of my extra-medical cancer-needs. Planet Cancer is a social networking site for young adult cancer patients, survivors and their caretakers. Because I have a type of cancer that disproportionately impacts younger adults, and is relatively unusual, it felt nearly impossible to find an in-person support group that felt like I'd have the shared experience (type of cancer and age, mainly) required to maximize such a group. That same in-person disadvantage became an advantage on Planet Cancer: the Hodgkin's discussion group and threads are incredibly active because of the proportion of Hodgkin's patients around my age. Planet Cancer gave me what no other source could have; what I've needed the most: other individuals experiencing similar cancer journeys who make me feel both emotionally understood and can also answer my many practical medical questions. I have learned so much about how to effectively advocate for myself, how to cope with life outside of the treatment room and hospital, and really important specifics about my side effects, tests and treatments that no doctor told me, but my peers did. It's been simply invaluable to me, and I would recommend logging on to this secured site to anyone who needs a community or an answer.
1. And, as cheesy as it is, my most important resource of all isn't a website, a book, or any formal organization. It's community, friends and family. It's all of you.

Thursday, July 29, 2010

SWHAW Gets a Facelift

You may have noticed that She Who Has a Why just got some pretty fancy renovations. Big thanks to my talented blogging/tech savvy friends Kate and Emily for their help. In addition to aesthetic changes, I have also added a feature that some of you have asked about in the past: you can now receive email updates each time that I put up a new post, containing the text of that post. All you have to do is enter your email in the box at the top right corner of the blog, then click through on the verification email that you receive shortly after.
Communicating this experience - the details, the plans, the decisions, the pain and the lessons learned - is sometimes hard for me. But it's part of my healing process as much as it's also a means of updating my friends and family, and serving as a resource for folks facing similar challenges.
Thank you all for following along.

Friday, July 23, 2010

The Experience of Becoming A Bone Marrow Donor

I like to think that I surround myself with do-gooder types, but even I was surprised by the fact that I have two friends, Jason and Rebecca, who got their calls from the Gift of Life and became bone marrow donors in the past few years. Their stories are beautifully told in their own voices below and provide all of us with a tool for those who need an answer to the question, "what does it mean to become a bone marrow donor?" Many thanks to Jason and Rebecca for sharing with us.

Jason's Story:
The prospect of donating bone marrow can be a little nerve wracking, but, speaking has someone who a) has given b) has a very low pain-threshold and c) is absolutely terrified of needles, I can tell you need not worry. Swabbing your cheek is a very easy step (that you all should absolutely take!) that is the first step in the process. To find a match, all they need is a little DNA and a few cells from your cheeks will do the trick. When you go to a drive, you'll fill out a quick and easy form, take a glorified Q-Tip and swab the inside of your cheek. Then, bing bang boom, you're in the registry.

But, by this point you know that already, so I want to give you an idea of what the rest of the process is like. Should you be a potential match, you will get a phone call from Gift of Life. They talk with you about the process, about the tests you will take, and to answer any questions you might have. They even assign you a specific person to work with throughout the process. In the first round, they contact a large number of potential matches, casting a wide net, hoping that they will be able to find as close to a perfect match as possible. To do that, they take a few tubes of blood and run their hematology magic on it.

Then, a couple of weeks or a few months later, if you are the match you get the next call. At this point, you learn about the donation process. There are more tests to run, including a physical, an EKG, x-rays, and some more blood tests.Now is when we get to the good stuff. There are two methods for donating. The process they will use depends on what the recipients doctor deems would be the best way to receive and use the donation. Before receiving the donation, the recipient undergoes aggressive chemotherapy. The recipient’s immune system is totally wiped out so the marrow you donate will replace that clean slate. Clearly, timing here is important, but Gift of Life was able to work with my final exam schedule and my location, to arrange the procedure.

Now on to the two options. The first, as I understood it, works this way: once a day for 4 days before you donate, you get injected with a growth factor causing you to create more white blood cells which, on the day of the donation, they will extract. Essentially, they hook you up to a machine that filters all of your blood and takes out the extra white blood cells. Those white blood cells will be given to the recipient to reboot their immune system.

The other option, which they used in my case, is straight-up bone marrow extraction. I was given general anesthesia and went to the OR. In order to get the marrow out they essentially stuck a big ol’ needle into my lower back and took the marrow right out of the bones. I spent a few hours in recovery and they sent me on my way with some strong painkillers.

The question everyone asked was “how bad did it hurt?!” And, frankly, it wasn’t that bad. The day I donated, I flew home (I was a senior in college and was going home for winter break). More than anything over the next few weeks I was sore. There wasn’t a great deal of pain (I switched over to extra strength Tylenol pretty quickly), but moving from standing to sitting or sitting to lying down took some effort. I recovered well and two weeks later took a 3-hour car trip and sleep on the floor at a friend’s house for New Years. I was told to avoid contact sports for a month, but other than that, I didn’t have any other significant restrictions.There are, of course, more details about the before, during, and after that I am happy to share (either in comments, or you can email me).

If you haven’t yet joined the National Bone Marrow Registry, I strongly urge you to do so. Being lucky enough to be selected as a donor was far and away the most meaningful and important thing I have ever done, and, God willing, you will be fortunate enough to have that experience as well. - Jason Fenster

Rebecca's Story:
There’s a little girl somewhere in this world who is cancer-free and alive because when someone asked if I wanted to join the bone marrow registry, I said “yes.”

Thinking about signing up for the registry? Do it! Swab your check, and if you’re blessed enough to be a match at some unexpected point down the road, jump in and give that little piece of yourself without worry. Because the physical process is far less of an “ordeal” than you’d expect and the rewards – both potential and guaranteed – are greater that you could ever imagine.

I loved donating. It was one of the most important events in my life and high among the things I’m most proud of. It was exciting and humbling and BIG– and it didn’t hurt a bit! Truly! The worst part was having blood drawn for the tests to confirm I was a match, and even that was mostly because I had to contend with Midtown traffic to get to the lab. Over a year later, I still become energized just talking about it. With so little inconvenience to myself, I saved someone's life. I'm still awed and grateful that I can say those words.So sign up! It's so little to give and so very much to gain. - Rebecca Chaikin

And now is the perfect time to swab because Good Morning America is temporarily covering the cost of new registrants in an effort to find a match for a little girl who plays young Nala in the Lion King on broadway. Let me be the third voice in this post to say: get swabbed!

Sunday, July 18, 2010

9 Weeks

It's been about 9 weeks since my last blog post. Here's some of what has happened in my life during that time. First, I finished cycles 3 and 4 of GVD chemotherapy, and had scans that confirmed that the chemo has continued to work and I remain in remission. Though the toxic chemicals are still making their way out of my system, I've been able to have a pretty normal and awesome summer, and I have tried to treasure every day. I have enjoyed being able to give my all at work, have some fun adventures, and spend quality time with my friends and family without feeling too distracted by germ-anxiety or feeling sick.

And while I don't know all that you have been up to in the last 9 weeks, I do know this: in dozens and dozens of drives across the country and world, you all have put thousands of individuals into the bone marrow registry. Going by the statistics, you, my family and friends, have registered matches. Going by the statistics, you have saved lives. Thank you all for your creative, passionate, and extraordinary efforts to grow the bone marrow registry. You have mobilized in inspiring ways and I am proud of and grateful for my world-wide network of committed doers.

This brings me to some wonderful news - the other exciting thing that has happened in these 9 weeks, is that I received a call that I have a 9/10 match -- a 23 year old woman who is registered in the Israeli bone marrow registry. This match is very promising, and was news that allowed me and my family to take a breath that we'd been holding for months. While this is no doubt fantastic, the search continues for other 9/10 and 10/10 matches (based on 10 specific points of DNA). Please continue your efforts to register more individuals and participate in upcoming drives. A list of upcoming drives through Be The Match and Gift of Life can be found here and here respectively -- note that all swabs go into the same system, so you can attend or volunteer at any drive and know that it will make a difference. There's one coming up on August 5 at the DCJCC (contact grossman.allison@gmail or debra.eichenbaum@gmail.com if you're available to volunteer!)

Many of you have faced many questions about what becoming a donor involves and whether it is a painful and difficult process. As promised, two of my friends who have gotten that call and donated to people in need, will share their stories in an upcoming post.

Now that a potential donor has been identified, I will be determining the next steps in my treatment process in the coming weeks. I will share those decisions here with all of you.

Tuesday, May 11, 2010

Organize a Bone Marrow Donor Drive

Shortly after my last post, I resumed cycle three of the GVD chemotherapy which has been working very well to control the disease for the past few months. On Friday, I will begin cycle four. I am afraid that this is the only substantive update that I have, as I remain in a holding pattern while the search for a bone marrow donor progresses (we have still not found a match) and I consider participating in a clinical trial, which somewhat hinges on the status of the donor search, since my oncologist feels that the trial would be less risky if I had a well-matched donor as a back-up plan.

Many of you have already held drives, gotten yourselves registered (just a simple cheek swab!), and worked with my family to coordinate future events to register more donors. I sincerely thank you all for your efforts. If you're able to plan a drive in your office, church or synagogue, camp, youth group, or community, please consider working with the Gift of Life, or Be the Match -- contact information and their websites can be found at the end of this post. While we're looking for a match for me, we can also help register matches for other people's Elissas -- communities of color are particularly under-represented and we can all help add all types of people to the national registery.

Please read this 'guest post' from my friend Miriam, who organized a donor drive recently in New York. In an upcoming post, I will be adding some testimonials from friends who have actually been bone marrow donors, who will share their experiences as well. I invite those of you planning drives who have dates scheduled to email me so that we can use the blog to spread the word, and keep my mom and sister in the loop as they continue working hard to get as many new registrants into the system as possible. Please also consider sending in some "best practices" just like Miriam, so that I can post additional resources for others planning events and drives. Thank you all!

"Organizing a Bone Marrow Drive with the Gift of Life Foundation (GOL) was an absolute pleasure. Their personable staff, organization (which I truly appreciate) and simple instructions made everything go smoothly. I decided to organize the drive and thought that holding it at work (the Union for Reform Judaism) would be perfect. Before I contacted GOL, I wanted to make sure all was okay on the work end of things. I contacted our HR department and explained what I would like to do. After I was given the go ahead, I reserved the conference room at work, picked a date and time (working with my friend Cara to make sure the date worked for her as well) and called Gift of Life. I spoke with Shayne Pilpel, GOL's recruitment coordinator and he explained the process while I gave him all of our information (date, time, location, volunteer coordinator- me, how many kits I would like, etc).

I sent them a business logo and the dates/times of the drive and GOL created a flyer for us to use. We promoted it through our office staff and thanks to the power of friends and the internet, many other people were brought into the loop as well. It was suggested to gather a few volunteers (thank you Cara and Natalie for all of your help!) and set up a time to conduct the volunteer training which is a simple 20 minute phone call with a GOL staff person. They send all of the information in a power point and are available during the drive for questions as well.

A week before the drive I received a box from Gift of Life containing everything from hand sanitizer, a large banner for the table, testing kits, consent forms, rubber bands, name tags and even return shipping labels. I set up the drive as instructed with the help of the wonder volunteers and the day went smoothly. We packed up everything as instructed by GOL and put the shipping label back on the box and we were good to go- 20 more people in the bone marrow registry! I would work with GOL again in a heart beat! If anyone is interested in helping to set up additional drives, I am available to help! (miriam.fink26@gmail.com)"


To organize a drive - contact "Gift of Life" or "Be the Match"
http://www.giftoflife.org - 1-561-982-2900
http://www.marrow.org - outreach@nmdp.org - 1-800-MARROW2

Monday, April 12, 2010

Calendars

When I first began working at the Religious Action Center, Mark, the Associate Director, talked with us about the many calendars that we functioned on at the RAC. He explained that we adhere to the Jewish calendar, so that we can be strategic in our grassroots efforts while being sensitive to the schedules of our members and our own religious needs. Our life also ebbed and flowed with the congressional calendar in order to plan our lobbying and advocacy strategies. Additionally, we functioned on the Reform movement's organizational calendar - a distinct third calendar of meetings, conferences and events. He explained that we overlay all of these calendars, and do our best to maintain a healthy balance through it all. Beyond my year at the RAC, I applied this same basic thinking to my work at NCJW. It is important to balance those same three calendars to ensure maximum efficacy at work.

On top of all these calendars in the office, everyone lives by their personal calendars – I overlay my personal calendar of birthdays, anniversaries, life cycle events, appointments, vacations, etc, while also trying to keep the calendars of the important people in my life in mind. My life is impacted by my family members calendars - factoring in that my mom will be busier at work just before tax season or when my sister has a lecture coming up. With so many friends in grad school, I often keep an eye on the academic calendar since my life is busier when they have more time during breaks, or early in the semester or quarter. I also have the Jews United for Justice organizational calendar overlaid on top of all these, to keep up with my commitment as a member of the board of directors. We all keep so many simultaneous calendars, each sometimes coming to the forefront, then receding back again, when appropriate. And it's always seemed to me that one of the best indicators of one's happiness and well-being is how well those calendars are balancing.

Given that I generally enjoy the balancing act, it's still strange to me to think about how the cancer calendar necessarily trumps all others. The events of the other calendars, the sum total of which at one time defined my days, effectively disappear. Suddenly it isn't a matter of balancing the many calendars, it becomes all about adhering perfectly to just one. One that’s nearly always out of my control, and one that nearly always comes on too quickly to ever clear the others in advance.

When I am in treatment, I profoundly missed the act and art of balancing calendars. I miss having my life focus on more than one thing at a time. But I believe that in the process, I also gain insight into which calendars are most important to me, so that when I return to the balancing act, I am able to balance better.

After two weeks of feeling like I was back at it, a conversation with my oncologist in Chicago has left me feeling the effects of the cancer calendar's ultimate take-over once more. As I schedule my next round of treatment here in Washington, and learn more about the status of my bone marrow donor search, I will keep you all posted here.

Wednesday, April 7, 2010

Spring Break

As I recently reported, I had a very encouraging set of scans at the end of March which indicated that chemotherapy worked well. Despite this, my oncologist here in Washington prescribed additional chemo, which I was scheduled to continue on March 26. On the evening of March 25, I spoke with my oncology team in Chicago about some treatment options moving forward, and they recommended taking a break from chemotherapy while we assess our next move. My anxiety about deviating from my very trusted DC doctor's recommendation (this was the first time that there had been any significant difference between the two physicians on treatment protocol) was heavily outweighed by my relief and joy over pausing treatment temporarily.

This respite came after a fairly grueling six weeks. I underwent four rounds of chemotherapy during February and March, with a three-week hospitalization and recuperation for meningitis in the midst of it. Paralleling a record-breaking cold and snowy DC winter, those weeks constituted a dark and depressing time for me - a time marked by pain and isolation, a time when illness cut me off from my social and professional life in miserable ways.

But in the few weeks since my fourth treatment, I have found new meaning in the term "spring break." I have felt a small sense of renewal. I have had visits from some of my closest friends back from semesters abroad or on spring break, and was able to go home to Chicago to celebrate Passover, which was restorative and wonderful. I have been able to be fully present at work, and feel on top of my portfolio and responsibilities for the first time in months. I've been able to spend time with my friends and enjoy the gorgeous DC spring. I've been able to make plans more than a day in advance, have fun, and feel normal. And even if I've had to employ a bit of denial to do it, after a tough winter, it has simply felt so good.

The next couple of weeks may bring me back to my reality as my doctors, family, and I make decisions about next steps in treatment. I promise to share those plans as soon as they become more clear. In the meantime, I'll be enjoying the sunshine.

Monday, March 29, 2010

Breaking You Down, to Build You Back Up

One day in 6th grade, we were learning about weight training in gym class. I remember my teacher, Mrs. Deal, explaining that weight training, by definition, destroys muscle fiber so that it can build itself back up again to be even stronger.

At some point early on in my cancer experience, I began to apply this same paradigm to my treatment. I tried to accept the idea that I had to be broken down to be built back up. Chemo, radiation, transplants - these actions wipe out your system, debilitate you in order to debilitate the disease and give you the rest of your life to be stronger and better. Thinking about it in this way was a means of coping with the intensity and toxicity of treatment.

But I have always had questions about this basic premise. It seems counter-intuitive. Cancer patients are gearing up for a fight, so why deplete their system to such a degree that they feel demoralized, weak, and not at all like the warriors that their friends, doctors, families, and society as a whole, call on them to be. Diminishing all your body systems in the hopes of also diminishing the cancer in the process seems...inelegant. If I'm being completely honest with myself, this slash-and-burn approach has always felt wrong. Especially in light of the fact that my cancer has consistently responded well to treatment, I have often questioned the principle behind the aggressive nature of our approach.

I find myself questioning it most heavily now, as I weigh my options for the next steps in this fight against cancer, especially in light of my recent scans which showed no measurable cancer. I have suppressed this concern in favor of adhering to the standard medical protocol. I have, and continue to put my trust in my doctors to prescribe the best known treatment for me. I believe them when they say that even though they can't see it, they know cancer remains, because of the nature of how lymphoma behaves. Even as I follow their advise and acknowledge that my hunch should not prevent me from proceeding with treatment, I just can't help but feel uncomfortable with the aggressive nature of the standard course, and question whether there are limits to how much you can be broken down before you can no longer be built back up.

Thursday, March 25, 2010

GVD

Tomorrow, I begin my third cycle of GVD chemo therapy. GVD is an acronym for gemcitabine, vinorelbine, and pegylated liposomal doxorubicin.
This is a fairly new regiment, which works on a three week cycle of two weeks on, and one week off. Put another way, the cycle is 21 days long, and I take these drugs, via an IV drip that takes a few hours, on days 1 and 8. I have been doing this outpatient chemotherapy on Friday mornings to minimize work absence, and to have the weekend to rest. After four treatments, I'm happy to report that the regiment a) has resulted in fairly minimal side-effects and b) is working!

When I say "minimal side-effects", what I mean is that with the glaring exception of contracting meningitis because my immune system was compromised - a side-effect of all chemotherapy, by design - my life hasn't been too deeply disrupted by the chemo itself. No chemotherapy regiment is without its toxic side-effects, and I have felt tired and had my share of nausea, but otherwise am experiencing nothing too debilitating (again, besides that two-week hospitalization, which sucked hard) and I have been able to work and get out to have some fun on my better days.

And when I say that GVD "is working", what I mean is that my planned scans following the completion of cycle two, showed excellent results. I have had a "complete response" from treatment, with tumors/lymph nodes shrunk to normal size, and significantly lower amounts of cancerous activity. The cancer is still being effectively combated with treatment, which is a good indication, but still cannot be cured with chemotherapy alone.

As far as I know (the process is confidential) the pursuit of a bone marrow donor for me is still underway, and we're still well within the time frame in which I would not yet have heard back. I am also considering a promising clinical trial, prior to (maybe even instead of) the transplant, that I will write much more about once I know much more about it. In the meantime, I will be here in Washington for the foreseeable future, and will let you all know as plans progress.

A plug for two upcoming donor drives - if you are in New York or the Chicago area and are able to get registered/tell your friends and family, please do!

In New York - April 28th from 10 am-5 pm located at 633 3rd Ave, 7th Floor, New York. Please contact my friend Miriam Fink at mfink@urj.org to sign up and participate.

In Chicago - May 2nd at Temple Beth Israel in Skokie (details to follow)

Thursday, March 4, 2010

Two Ways

Albert Einstein is quoted as saying that there are two ways to live your life: as if nothing is a miracle, or as if everything is. While there are shades of grey in any situation, I think there's something inspiring about this quote. We can choose to view our lives - the blessings and challenges - through a positive lens, or through the eyes of a cynic. We can choose gratitude over anger. We can live as if everything is a miracle.

Last month, in a period of 36 hours, I integrated two huge new realities into my consciousness, my life and my future. First, I was accepted to Rabbinical school at the Hebrew Union College-Jewish Institute of Religion. In making the decision to apply for, be accepted to, and attend HUC, I was fulfilling a dream that I have had for most of my life. I was thrilled to be admitted to the program and excited to finally take the first steps toward getting the education and experience I needed to become a Rabbi. Opening that letter was an incredibly profound and exciting moment in my life, and one that I was glad to share with so many of the people that I love.

36 hours later, I went in for a check-up at my oncologist's office. It was just a few days past the one-year point since my autologous stemcell transplant, and three months since my previous PET/CT scan that had reaffirmed that my cancer was still in remission. Unfortunately, the scan showed ample evidence of a relapse.

What a relapse means, practically speaking, is that I haven't yet won my battle with Hodgkin's Lymphoma. I am back in chemothrerapy, and most likely will have a bone marrow transplant from a donor in the coming months.

There are two ways to look at this 36 hour period. I choose to see it as a blessing. This is not to say that I am not incredibly shocked, angry, disappointed and full of questions. And it's not to diminish my profound sense that it's not fair that just as my long-term future was taking shape in a way I had dreamed of and envisioned, factors beyond my control have turned my future into a dark and murky question mark once more.

There are also two ways to look at the changes that I've made in the last year of my life. I could choose to look at the decision to cut toxins and carcinogens out of my diet and home environment, and to work to live a healthy emotional, physical, social and psychological life, as a failed experiment. These choices did not save me, did not make the cancer go away, did not help me avoid this fate. I could look at these choices, which were sometimes more difficult and more expensive, and think that it was all for nothing. I choose instead to be proud of the attempts that I made to control the elements of my life that I felt that I could. I choose instead to be grateful to have the resources, access, and support that I needed to make those changes. I choose instead to acknowledge that I did nearly everything that I could do, but that sometimes controlling what few factors we can, will not influence the outcome of a situation. I am making the choice to view the last year of my life as a gift in which I was able to thrive, and embrace life.

When I first heard the Einstein quote years ago, it reminded me of one of my favorite passages from the book of Deuteronomy in the Torah, which Reform Jews traditionally read on Yom Kippur: "...I have set before you this day life and death, blessing and curse. Choose life." It's not a request - it's a command. So I have to strive to see everything as a miracle, even when it is difficult to do so, even when a huge blessing and a terrible curse are put before me in a matter of hours.