She Who Has a Why

Five

2011-10-18T17:15:00.002-05:00

I'm not much of a numbers woman. Those who've tried to figure out a restaurant bill, or study for the GRE with me can attest to the fact that math is not my forte. Yet, there's something about this time of year: the language of the Jewish high holidays that talk about an accounting of our lives, the disproportionately high number of birthdays amongst my family and friends, and the transformation of the season, that tends to make me more numerically-minded. Today is a significant anniversary and I have numbers on the mind.

It's been five years to the date since my original diagnosis of Nodular Sclerosing Hodgkin's Lymphoma. It was two days after I turned 23 years old, and I got the news sitting on a hospital stretcher in a room at the George Washington University ER, sitting beside my friend Emily, who's been by my side in the five years since. The ER doctor on-call that night retrieved the biopsy results, which had been taken five days earlier and were still being processed when I was admitted to the ER for dehydration and feeling faint. After delivering the results, he patiently answered our questions, then walked to the door, turned back toward the two of us sobbing on the bed, and said, "have a good night, ladies." Emily and I simply burst out laughing. I don't hold this automated farewell against him: I share this anecdote because I like looking back and knowing that within five minutes of my diagnosis, I had a good laugh.

It's been five months to the date since my transplant and though life is almost back to normal, I am still dealing with weakness and a slew of temporary and permanent consequences from treatment. And I guess I shouldn't be shocked, because today, a day that felt appropriate for accounting, I totaled up some other numbers. During these last five years I've had 33 doses during 27 cycles of seven different regimens of chemotherapy that included 16 different chemo agents. I had 10 separate stays at three hospitals plus three surgeries and two rounds of radiation totaling 40 treatments; 80 if I'm counting each dose administered.

Five. We're reclaiming that number as a lucky one today. My graduate program will be five years long. And in five more years, if scans stay clear, my status will change from "in remission" to "cured."

Most importantly, there have been five matches so far. Five other people in need of matched unrelated bone marrow donors have identified their five donors through drives that you - my family and friends - organized. Five people found their matches because of your efforts, and those are just the ones that we know about through the great notification system that the Gift of Life has set up. There may have been, and surely will be, even more through the Be The Match registry that so many of you worked with. Five matches already found from drives held within the last 15 months alone.

I'm thinking about all of these concrete numbers today, but most days it is the unquantifiable that I reflect on and stand in awe of. The countless acts of kindness received, lessons learned and meaningful interactions. The work that you all did to help find my match, to raise money, awareness, blood, plasma, platelets and register thousands of new potential donors in the Bone Marrow Registry.

Lest this post be too much about the cold numbers alone, I wanted to share this quote from Audre Lorde's The Cancer Journals, which feels apt in summarizing my aspiration and sense of these last five years, and perhaps, to some degree, the next five as well.

"I work with the consciousness of death at my shoulder, not constantly, but often enough to leave a mark upon all of my life's decisions and actions. And it does not matter whether this death comes next week or thirty years from now; this consciousness has given my life another breadth. It helps shape the words I speak, the way I love, my politic of action, the strength of my vision and purpose, the depth of my appreciation of living." - Audre Lorde

Militaristic Language

2011-09-25T18:39:00.006-05:00

I am generally an opponent of militarized language in my own life and the culture around me. I think that using war and battle metaphors erodes our sensitivities and normalizes the suffering of war. For these reasons and many others, I have tried to come up with a different framework for talking about my cancer, but at times, that has been hard.

Several years ago I read Susan Sontag's book, Illness as Metaphor, which I found to be an interesting and powerful critique of how many chronic illnesses have been addressed by culture and society, but the book was largely about the danger of the use of metaphor to describe illness. I have found that I needed to express how I was feeling to get through this experience. In order to express how I was feeling, I needed the tool of potent metaphor. But too often, I couldn't think of language absent of militaristic terms.

For example, in trying to describe my feelings just after getting my good test results last month, I had one clear image in my head; one truly effective metaphor. I felt like a General at the end of a war, who had been so focused on each individual battle that they couldn't see beyond what was right in front of them, now standing atop a hill and surveying the final battlefield, still coming to grips with the losses and successes, while a ticker tape parade waited at home. This metaphor captured the complexity of my relief, joy, grief and the intensity of the moment, but like so many of my metaphors along this cancer journey, is soaking with militaristic imagery.

A few weeks ago, an opinion piece appeared in the New York Times that dealt with this subject in what I felt was a thoughtful way, written by Daniel Menaker. As I continued to contemplate the ease and frequency with which I fall back on the use of this vocabulary, I was really interested in what he had to say.

Menaker opens his column:

EVERY day in obituaries, you will find combat metaphors about people who have died of cancer. "After a heroic battle against cancer," "valiant fight against melanoma" And so on. News stories routinely refer to "weapons" against the illness, the "arsenal" of drugs, "victories."

This line reminded me of something that Christopher Hitchens wrote in the first of his extraordinary columns about his cancer experience in Vanity Fair:

You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.

For so long, I have struggled to figure out why these combat metaphors are so common for cancer patients specifically, and why and how they have been useful for me over the years.

I'm not sure I'll ever be able to live with the military language around cancer that label me a survivor, a fighter, a victim; but I'm not sure I'll ever be able to fully describe my experience in the vacuum of such language. Menaker does a great job of explaining the utility of these terms. He writes:

But I also endorse the militarization of cancer talk. At least for some patients, and at least when they talk to themselves or those close to them about their situation. Because all of us are — by part of our nature — combative creatures, and it can be emotionally useful to view cancer as an enemy, even when you know it’s not.

It can motivate us to follow the often complex treatment regimens (regimens!) involved. It can help us feel less frightened and more composed when facing surgery. It can strengthen our resolve to stay in the best shape possible and to deal with pain when it comes. It may be a kind of self-delusion, but it may also assist self-preservation. And it may help others to face their illness with less fear than they would have had otherwise. There is nothing wrong with being emulable.

There’s a strong reason that cancer in particular tends to elicit warfare language: it is so radically territorial in its actions. That is, it’s usually trying to take over the physical space that is one’s body, just as a foreign army tries to take over one’s country. Also, try as we may, we cannot scour the language of metaphor. “Cancer” itself is a personification — well, a crustaceanification. A malignancy doesn’t know or care if it’s “mal.” It’s not evil. It just is.

Both authors also explain what does and does not work about these metaphors in their personal experiences. Hitchens writes:

Myself, I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.

When I read this, I breathed a sigh of recognition. These terms didn't feel wrong only because their source is in war and violence, they also made me feel disingenuous. Words like "brave" and "warrior" made me feel like a fraud. What is valiant about fighting (there's that term again...) for your own life? Survival is the most base, simple thing we're all biologically programmed to do. And my experience reflected Hitchens'; during treatment, you often feel anything but strong or valiant. Still, the question persists: what is a new metaphor or set of terms to use to articulate aspects of this experience?

In his article, Menaker says that he has found it useful to think of cancer as a "problem." He writes:

...it seems more calming, less victimizing, to think of the disease as a problem, not an enemy. A problem to be worked on, considered from this angle and that, and solved. Or just as if not more likely, not solved. But in either case not a malevolent foe who is going to vanquish or surrender to me. There’s no “volent” involved, after all.

I see his logic here, but I wonder if the term "problem" doesn't bring along its own set of issues. A "problem" is something that, with the right set of resources and the correct strategy, you are able to solve. There have been times when, in order to cope with the reality I was facing, I had to acknowledge that this might be a problem without a solution. And, does the notion of cancer-as-problem make those who do not live less effective problem-solvers? That just doesn't resonate with me.

My own shaky version of a solution to this larger question is to instead, try my best to think about cancer as a journey. A journey is neither positive nor negative on its face, but does bring with it the inherent positivity of forward motion. A journey doesn't imply a struggle per say, but does evoke the idea of stops and lessons along the way.

To reframe and make more accurate the metaphor of the General on the hill, I have sought out the right words to describe not the war, but the journey.

I think that the emotions of the past few weeks have been made more complex because of my embrace of the journey metaphor, but that in the long run, I am better off for that. It has enabled me to understand that this significant stop along my path is not the final one, not an ending of any kind, but rather a milestone to be celebrated and contemplated as I continue down the road.

A Deep Clean

2011-09-09T10:16:00.001-05:00

For nearly five years, cancer has been a persistent backseat driver dictating the twists and turns of my ride even as I have tried to maintain control of the wheel; gripping it tightly, shoulders clenched. These days, I feel like I am finally driving alone, windows down, music playing, with my destination in my hands alone. It feels good - euphoric sometimes - and no doubt is an interesting adjustment.

As I conclude my recovery time here in Chicago, and plan to return to Washington on September 15(!), I have found my time divided between two main efforts. The first has been an on-going alchemy challenge with my doctor to maintain the right combination of medications - especially the three that do the job of striking the ideal balance between the donor graft and my own immune system. I have had some tougher days: some flare-ups of graft versus host disease that leave me tired and nauseous, followed by dosage changes that can be hard on my body. I've also begun to face the follow-up and fall-out from all these different toxins I have been necessarily exposed to. Seeing specialists to deal with permanent damage, and doing tests to compare baselines, is going to continue to occupy attention and time in my life, but it feels good to finally address some things that have had to wait to deal with until after treatment was finished. Mostly I have had good days, and feel like I have had the luxury of some time to organize and think ahead in a way that I haven't in many many months.

One of the manifestations of this new energy has been the second effort occupying my time and attention: a massive house-cleaning project that I've dragged my whole family into. While I was never destined to star on Hoarders, those who've been in my room in Chicago or my apartment in DC might characterize it as clean but cluttered. Piles, full shelves and sometimes brimming closets are my standard. If only you could see me now.

I've sorted through every drawer, every bin, and each piece of clothing; every book, button, and piece of paper in my childhood bedroom. I have cleared out each college box stashed in the basement and sifted through childhood projects, old paperwork, toys, games and books. Everything has been sent off for donation, recycled or thrown out, and in rare cases, saved. The effect is very satisfying.

This instinct to purge makes some cancer-related sense. The desire to start fresh, to step up to all those things I'd been putting off when treatment had left me so exhausted and overwhelmed, and the urge to control my environment after years where control felt so lost, all seem like a natural reaction. But another byproduct of this mass cleaning effort has been a prolonged and sweet episode of "elissa froman, this is your life."

I've found items ranging from the hilarious (my 3rd grade school paper article polling the class on the ’93 Bush-Clinton election, a lot of pictures from my bowl-haircut days) to the telling (a VHS tape recorded off the TV that contained both Judgment at Nuremberg and Sesame Street Presents: Follow That Bird!) to the reflective (my first lesson plan as a religious school teacher, 14 years of hand-written cards from one close friend) to the once-thought-lost (favorite earrings from eighth grade, my first oil painting) and about everything else in between.

There's something surprising and poignant about how this cleansing expedition has turned out. As I feel a renewed opportunity to let myself look forward to my future, significantly less encumbered (though not completely free) by the "what-ifs" that have been present for so long now, I feel that this little protected period of time between the good news and rushing back to life in Washington, is an oasis. And having the opportunity to look back so deeply and thoroughly: reading birthday cards and book inscriptions; seeing toys, art projects and stories that bring back great memories; holding little landmarks of my past in my hands; has prepared me well for continuing to contemplate my future.

A Future

2011-08-15T22:47:00.003-05:00

"Elissa, hi, this is Dr. Gordon. Just wanted to let you know that everything looked great on the scan. Nothing abnormal, actually, so I think you're where we want you to be. You can give me a call anytime. Talk to you later, bye."

This message and a subsequently returned call to Dr. Gordon a few minutes later (two days before I was expecting results; what a mensch!) confirmed the best scan results possible. No activity on the PET scan and nothing on the CT except for some scar tissue in the location of the original tumor in my chest that started it all. No measurable cancer. My scans were clear.

It took me a couple of hours to move from the spot where I heard the message, returned the doctor's call, and took a couple of minutes to cry tears of relief, joy, and a blend of other emotions.
Having been elated by good news so many times, only to be crushed by the bad, it's hard not to scan the situation for all possibilities. But all here are positive. At a minimum, this sanctions my return to DC and buys me three months until my next set of scans. At the most, this is the beginning of a future clear of this burden, this hurdle, this medical, emotional and personal education that I didn't ask for but got anyway. A future full of choices and opportunities and the full range of human experiences that I'm destined to have. A future.

Since 100 days is a significant milestone after a transplant, (risk of acute Graft Versus Host Disease decreases, some medications can be adjusted, etc.) I will likely plan to return to Washington shortly after, in early September, with monthly visits to my doctor here in Chicago for awhile.

While I know that healing from a transplant is an involved year-long process and that I will not be proclaimed cured until I have five years of clean scans, I am hopeful those five years begin today. I am hopeful that the transition from being a person with cancer, to a person who had cancer, begins today. I am hopeful that I get to start writing a new chapter, beginning today.

Holding Two Truths (or, The Audacity of Cope)

2011-08-10T18:03:00.003-05:00

Following the Talmudic principle that (s)he who is wise learns from everyone, while I was studying abroad in Israel during college, I participated in a program at a student center near campus known for their kiruv, attempts to make non-Orthodox Jews become Orthodox. They sent interested female students to a local women's Yeshiva, house of study, and set them up with a hevruta, study partner, to study their Orthodox perspective on sacred Jewish texts (at least those texts that they believe women are permitted to study). I was paired with the wife of one of the Rabbis, a young woman who had grown up a Reform Jew but had become Orthodox, a ba'al teshuva. I worked hard and learned a lot from her that semester. She asked me many
questions - some that deeply challenged, and some that helped to solidify, my previously held beliefs. She led me to see texts I knew in a different light, and exposed me to new material. But no conversation was more central to constructing my personal theology than one where we were talking about the revelation on Mount Sinai.

She had been pushing me for weeks about whether I believed that God gave Moses the whole Torah (and we're talking the whole Hebrew Bible and Oral Torah - the 10 Commandments, 5 Books of Moses, Books of the Prophets, Writings and Talmud) on Mount Sinai. I gave her what I thought was an enlightened, academic, progressive Jewish response: that I believed there was some moment of revelation on Sinai but that I also believed that these texts were written in their historic context by many authors, canonized in later centuries and millenia. That they have historic and cultural, as well as religious and moral, significance for the Jews and all of humanity. That the stories, even if they're not historical fact, have relevance and meaning for us today, and that faith didn't depend on exactly what and when the texts were written. When I was done with my lengthy reply, I looked up to see her face turning bright red, her mouth twisting with frustration. She literally lept to her feet as she shouted at me: "you either believe it's the word of God, or you don't! You either believe the laws were handed down from God, or you don't. And if you don't, then they mean nothing!" After a lengthy pause, she looked at me and asked simply: "what do you actually believe?"

I walked out in a bit of a daze. I had spent 11 years in Conservative religious school, 9 years at Reform summer camp, and was 3 years into college where I was very active in my Jewish community and pursuing a Judaic studies degree. No one, in all my experiences, had ever actually asked me point-blank, to take such a convicted stance. To really decide for myself whether the commandments actually came from God, and by extension, what role, if any, God played in my life. I wondered, w
ho was I, to aspire to become a Rabbi if I couldn't answer such a question?

In wrestling with the question and its many corollaries since, I have arrived at a couple of important touch-points. First, I have come to understand that she, as an Orthodox Jew, posed this question in black-and-white terms, as though there are only two possible answers. I am not a fundamentalist, and believe the beauty of my religious, ethnic and cultural Jewish experience lies in the shades of grey. Second, I am very grateful for the journey that the question has taken me on. On it, I have had many conversations with many wise people about their personal theology, and I am richer for it. One of these wise individuals reminded me that it is an essentially Jewish principle to hold two truths in our hands at the same time. In other words, it took a long time for me to question the dichotomy implicit in her challenge and choose to ultimately reject it. In doing so, I have found a peace that has made it much easier to absorb and really listen to a multiplicity of beliefs without rejecting any on the basis that they aren't consistent with my own current understanding. By holding multiple truths at the same time - hearing the validity of the documentary hypothesis, while still feeling the sacredness in the stories and laws - I have remained open, my understanding constantly evolving. Holding onto multiple, simultaneous truths has been critically important in this, and every, aspect of my life.

Okay. I've gotten pretty Jewy here, and as I've said before, I promise to keep the content of this blog is very specific. So you might be wondering what all of this has to do with where my head is about this cancer situation. I'm getting there, I promise.

Recently I've had some viruses, symptoms and side-effects for which there have been no treatments, no pills, no solutions. And it's been getting really hard to repeatedly be told: "there's nothing we can do". But I think my anxiety about this response runs much deeper than just the immediate discomfort associated with these (hopefully) temporary conditions. For months, maybe even years, the most persistent and loud fear in my head has been the obvious one. The transplant was the last of my "conventional" treatment options. While I am being as positive as I can be, the question remains, it's answer implicitly contained within it;
what happens when there's nothing left to do? What happens if this is it? And I have only options to manage care, and an estimation of months, or years, with a deadline looming closer than the estimated 78 years my fellow Americans will have, what then?

In my experience these past few years, I've felt I could cope (with excellent care, insurance, and support) with any treatment, any pain, anything that I had to do in order to get better. The variety of aggressive treatment was, for me, only a small terror relative to the much larger fear during these repeated diagnoses.

In other words, it's not the diagnosis of the big "c" that's so horrifying, it's the potential prognosis of the big "d".

This possibility has loomed larger with every failed round of treatment. As the odds have gotten worse with each phase, I have taken in that information with sobriety, trying my very best to balance radical acceptance with a fierce commitment to my future plans. As often as I ponder these overwhelming questions about my mortality, I consider another set of questions, those that I would much rather be asking myself:
what if the scans are clear, and remain clear for the next five years? Who will I become? How will I transition to being a healthy person? How will I take the enormous lessons of this experience and apply them as I move forward, without also taking the enormous baggage? How will my body be permanently impacted, and what are the tools I have to mitigate the impact? What can I do to be stronger, better, wiser? What will and can my future hold?

And so I have a unique challenge in shaping the way I face lots of large and small decisions as I hang in limbo between these two possible futures. I struggle to figure out what the value of an experience or investment in myself - a vacation, a class, a special purchase - if I'm going to die anyway, or if I'm going to live to be 100. I wonder how to determine my priorities if I'm simultaneously planning for the long and short-terms. Do I study

Hebrew or watch Ellen, go for a salad or eat the chocolate, work on my website or
take a nap
?

There are a thousand decisions and choices, huge and quite small, that seem to hinge on what timeframe I'm operating on. I am trying hard to strike a hopeful and pragmatic balance.
I am considering all possibilities. I am holding both truths in my hands.

At the end of this week and beginning of next week, I will do the diagnostic PET and CT scans for the first time since halfway through SGN 35 back in March. With these post-radiation and transplant scans on the horizon, it's hard not to think about how they, like all their predecessors which have crescendoed in significance, are the most important ones I'll ever take. I will get the results, and have the opportunity to discuss them with my doctor next Wednesday, August 17, and will post an update here shortly after.

Prednisone: Friend and Foe

2011-07-14T22:35:00.004-05:00

Until I started chemotherapy, steroids were just something that after-school specials had taught me to avoid (Bobby and Stacy, anyone?). But I soon learned that they are part of almost all Hodgkin's chemotherapy regiments and would be needed for many other aspects of my treatment as well.

Over these past few years I have had to take a lot of steroids, and a lot of Prednisone specifically, for a range of reasons: to suppress allergic reactions to a contrast dye required for my dozens of diagnostic scans and an allergic reaction to SGN-35, and most recently, as treatment for Graft Versus Host Disease. The Predisone has worked successfully in all of these cases. While I acknowledge with gratitude that the drug has been effective, it also gives me about every side-effect possible.

Up until now, I've had large doses of the drug, but haven't stayed on it for extended periods of time. So while the puffiness, weight-gain, charley horses, headaches, the yucky taste of the pill itself (my friend Amy plans to get rich someday by inventing a candy-coating for it), mood-swings and never-feeling-full-after-eating, have all been annoying, they've been quite temporary. But for the past few weeks, I've been on a fairly large daily dose and it's been wreaking havoc on me. Most significantly, I have been having excruciating leg cramps in the middle of the night as my body withdraws from the drug, that can last up to ten minutes and include part or all of my leg or legs. On the worst nights, it happens a dozen times, on the better nights the cramps pass quickly and only hit a couple of times. As a result, I haven't had a good night's sleep in quite awhile, which inevitably impacts my days as well.

I've spoken to doctors, nurses and friends, and taken to blogs, for advice on how to prevent/treat this latest symptom. I read that potassium helped, so I've been drinking coconut water, eating bananas and taking a potassium supplement the size of my pinky. I'm also taking magnesium and keeping tonic water beside my bed, since quinine is thought to help mitigate the symptom as it's occurring, but interestingly enough is only available in tonic water. I've tried stretches suggested in the blogosphere. I'd like to think it's helping a little, but ultimately I'm just looking ahead a few more weeks when I can hopefully be off of the drug completely.

Prednisone is one of the most prescribed drugs in the world, and is used to treat a huge range of conditions, so I know that many of you (generally empathetic individuals to begin with), can seriously empathize here. I know, from speaking to many of you, that Prednisone has been your best friend and worst enemy as well. If you have any tips on coping with Prednisone side-effects, let me know!

Besides these steroid shenanigans and a surprise virus and infection, the past couple of weeks since my last post have been pretty good. I've felt much more like myself. I've been able to feel pretty productive and spend time with friends and family without too much distraction from my medical challenges. And I've had a couple of positive check-ups with my doctor which confirm that the GVHD is under control for now and my blood counts are slowly climbing. I am past day +50 post transplant, and celebrating the milestones as they come. The next major step, and the scariest one of all, will be diagnostic scans sometime in August. These scans, which I haven't had since late March, are the only way to really see how the cancer is progressing or regressing (there are no blood markers the way there are with some cancers). Only then will we be able to know how effective both radiation and the transplant have been.

Universal Receiver

2011-07-01T17:12:00.003-05:00

If I understand this process, (a big if!) by the end of the transplant year-of-milestones-and-recovery, I will have a new blood type (AB+). I think on a very visceral level, this is one of oddest and most interesting changes I will undergo as my immune system and other blood cells are replaced by the healthy donor system that will hopefully destroy the cancer without destroying too much else in the process.

Having a new blood type is one of the more mind-blowing aspects of this whole situation - scientifically but also metaphysically and even spiritually. Intriguingly, my new blood type is the "universal receiver," meaning that individuals with the AB+ blood type can receive blood donations from any other blood type. I have found myself reflecting heavily on the concept of becoming, officially, a universal receiver.

When I have asked those closest to me how I have changed in the past few years as I have gotten deeper and deeper into the cancer journey, they nearly all respond with some variation on the notion that I have learned how to better accept help. I think that in these years between ages 22 and 27, part of what it has meant to me to truly become an adult, and part of what it has meant to become well, has been to understand how to graciously receive all the manifestations of help that I have needed and been given. I want to believe that it has also made me more aware of, and responsive to, the needs of others - that becoming someone who can receive help has made me better at giving it as well.

The universe has sent some extraordinary opportunities to put this into practice. I have come to see the transplant as the most profound opportunity yet. It has been a big challenge to allow this huge gift from another human being to work effectively. It required trusting blindly in a process and person that was unknown. It made me allow for the possibility of transformation and change that I had no control over. (Many of you have asked me, perhaps joking and perhaps not, if I have had changes in my tastes, habits, or Hebrew language skills. In truth, transplant patients have reported changes like these in the past, and the possibility was as much terrifying as exciting for me.) It has felt like an enormous challenge that I have spent a lot of time contemplating and working on in the past many months. I have tried to be as open as possible, with the belief that the mind-body connection could help facilitate the success of the transplant.

This week, I got the results back from my first XY-fish or Chimerism test - a genetic test to determine how much of my system is me, and how much is the donor. At this phase, about 6-weeks post-transplant, they expect you to be about 30% donor and 70% yourself. When the results returned this week from the Mayo Clinic, they showed that my immune system is 100% donor.

The full implications of this news are still a bit ambiguous: my blood type (determined by red cells) and other blood components will be in flux for much longer. And the two systems may still try to fight one-another, resulting in some Graft Versus Host Disease or Host Versus Graft effect that could tip the scales again. But it's news as good as I could have at this phase of the process. It may be the quest for control in a situation without any, but I'd like to think that devoting positive energy to being open to becoming a universal receiver helped to spur things along. I am grateful for the help.

Age

2011-06-16T21:12:00.002-05:00

When I was first diagnosed, it was two days after my 23rd birthday. My unusually young age compared to the majority of individuals facing cancer has factored into my experience in some interesting ways. I was a few years past being considered pediatric, but the adult cancer clinic where I began treatment, and the other places I've gone since, have not quite figured out what to do with their young adult patients. Some of the unique needs of young adult patients - fertility questions and how to handle our population's financial, social, nutritional and overall health aspects of care, to name a few - are just not on the radar for most clinics. Thankfully, I found, primarily through word of mouth, online resources like planetcancer.com, organizations like Fertile Hope, and books like Everything Changes, to help guide me. My age has been an undeniably unique factor in my experience navigating cancer treatment.

My relatively quick recovery time in the hospital was also chalked-up to age by some of the nurses - but this time it was the age of my donor (21 years-old) that seems to have made the difference. I can't know if either of our ages explains the latest development but here it is: I have officially been diagnosed with Graft Versus Host Disease. I have a mild to moderate case that has just manifested in a few unpleasant symptoms. Because it was caught early, it's being treated without much fanfare with some heavy steroids (which have their own fun side-effects!) and is currently under control.
As I mentioned in my last post, this actually is one of the only ways to tell that the graft (the donor's system) is attacking the lymphoma as well as the rest of me, and, in the long-term, is good news.

So what might age have to do with it? Perhaps nothing, but Graft Versus Host was expected to pop-up sometime in the first year post-transplant. Having it show up this early, within the first month, seemed to surprise the transplant team. It's hard to tell if age is a specific factor in this latest phase of the escalated timeline, but i feel like there's something about these 21-year-old donor cells: they seem to know their mission, and move quickly. Whether there's a full scientific basis for it or not, I think that this bodes well for engraftment and success.

What's Next

2011-06-08T17:55:00.002-05:00

So now that I'm home recovering, many of you have asked me: "what's next?"
I don't know the full answer to that question, but here's at least the short-term summary. Today I went to the doctor and learned that my counts are great and rebounding very well. I'll be seeing the doctor once a week and once a week (down from every other day) a nurse comes to my house to check my vital signs and to draw blood tests. Hopefully soon, that protocol will change to me going to a local clinic. Right now we're focused on balancing anti-rejection medications that continue to suppress my immune system, testing to see how the donor is engrafting through special blood tests (which I think begin next week), and managing any Graft Versus Host Disease. My doctor has explained that we want to see a bit of GVHD because it is also an indication that the new cells are attacking the lymphoma, but they don't want to see too much, as GVHD at it's most extreme can be fatal. This phase will last awhile - likely until day +100, at which point we'll repeat diagnostic scans to determine how this effort has worked. As of now, I expect to remain in Chicago throughout. I'm a bit hazy on the details of what happens after this, though at the end, the hope is that I'm cancer-free and ready to get back on track with my future plans.

Home

2011-06-02T16:19:00.000-05:00

I'm writing you from the comfort of my childhood bedroom, where I'm continuing to recuperate, but at a healthy distance from the hospital and vigilant nurses with a dozen different reasons to wake you up in the night.

It feels indescribably good to be at home resting and out of the hospital. From here, a nurse will come every other day to take blood tests and administer any drugs that are needed. It's an exciting milestone on the road to recovery.

Counts Coming Up

2011-05-30T06:18:00.001-05:00

The big news here is that my white blood cell counts have already started coming up which means, amongst other positive things, that my immune system is slowly restoring and that I may be able to leave the hospital for more recuperation at my parent's home, this week! Beyond the small set-back of a fever yesterday, which is very much expected when the immune system is so low, everything is going smoothly.

Meanwhile, I pass the time by trying as best I can to keep in touch with all of you and listening to a lot of
the C.A.R.E. Channel -
a 24-hour nature channel that shows calming scenery of flora and fauna, with accompanying light, soothing music. And I sleep. A lot.

Thanks as always, for your visits, cards, packages and communications in their many forms. Even more than the CARE Channel, you're getting me through this.

You Are Here, I Am Here, Here I Am

2011-05-26T10:34:00.000-05:00

My white and red blood cell counts, as well as platelets and other measurable aspects of my immune system, are, as they say, bottoming out. All of these counts are dipping as the doctor's intend, and characterize a first of many layers of success with the transplant process. While my immune system is non-existent, I'm staying in the hospital to prevent infection, and receive platelets and blood transfusions, trying with each passing day to maintain my sense of self and individuality in the face of institutionalization.

In general, I aspire to be in a more regular state of mindfulness. But the sad truth is, mindful moments are extremely rare for me: I spend most of my time preoccupied with minutia, logistics, and things that are fleeting. Mindfulness is not a strength that I possess.

I'd been giving the concept of mindfulness a lot of thought during my recent course of radiation, and decided to challenge myself. Given that I found that daily practice pretty loathsome, I decided to see if I could ritualize the 40-minute daily treatment process by being present and mindful through a mantra of sorts. The theory is that if I can be mindful when I most want to escape reality, in a challenge that I find physical and emotionally painful, I can apply the concept to other parts of my day and experience more easily. And that by ritualizing the experience, it provided some context and inner strength to stay physically still for so long and transcend the pain accompanied with doing so.

The mantra began to take shape about a week before I began radiation. Three friends and I went to hear the Wailin' Jennys perform live at a local venue in Virginia. My friend Emily, social media maven that she is, had been tweeting back-and-forth with their account on Twitter since we'd purchased the tickets months ago, and had requested a song. She'd also tagged the band, as well as all of us attending the show, on Facebook the day of the concert. They tweeted at her at some point that same day to let her know that because one of group members was a bit hoarse, the group wouldn't be able to sing this particularly high-note inclusive, specially requested tune. So we were quite surprised when, a couple songs into the second set of the night, the group dedicated a different song to us. Group member Ruth Moody explained that she had written the song in the hopes of being more mindful and worrying less, and they began to sing a song called You Are Here off their new album. A truly beautiful tune that stuck in my head, the chorus is:

And there's no making cases

For getting out or trading places

And there's no turning back

No, you are here

Then I got to thinking about a couple of months ago when my friend Amy, a yoga instructor, taught me a Kundalini Yoga chant that aims to even breathing, decrease stress and help clear negative energy. She taught be to breathe in - Sa Ta and breathe out - Na Ma, and explained that translated from Sanskrit, the chant, satanama, means, "I am here."

These two concepts aligned well in my quest for a mindfulness mantra, but a piece was missing. There were three parts to radiation: three separate fields being irradiated. The third part came to me immediately.

In Hebrew, there's more than one than on way to say "here I am" or "here you are," but there are very select, special times in the Hebrew Bible when a term is used to define presence of a human being in their interfacing with God. So Hineini: Here I am, became the third phrase to focus upon during my attempt at a mantra.

By the final days of radiation, the mantra began as I lay down automatically, and in the days since then, I have continued to use each individual part, and the collective together, as I strive for mindfulness even in the hospital where it's easier to settle for the convenience of shutting down, and detaching from your awareness of yourself as institutional practices inevitably diminish your sense of individuality and self.

So I'm trying each day to remind myself: you are here, I am here, here I am. And I'm getting through it, slowly and one day at a time.

Day +5

2011-05-23T06:24:00.003-05:00

Today is the 5th day since the transplant, and is counted as day +5 in the new way that I'm counting time. There will be milestones, and eventually, a year from now, days will return to a normal count, as they did the last time.

In the meanwhile, I am trying to make the best of the hospital stay; enjoying time with friends and family when I'm awake, sleeping a seemingly impossible amount of the time, and maximizing my access to the amazing medical professionals who are helping to ensure that this time goes smoothly as it can.

The past few days I have felt incredibly tired as my red and white blood counts and platelets all drop down into the realm of being neutropenic, mandating even more stringent safety precautions to avoid infection.
It's a re-building period, one which I hope will begin to look-up soon. A lot of the day-to-day of this experience parallels the last time around, documented here on the blog as well. Though this transplant is different by definition of having received cells from a donor, the short-term process (the next month or so) is very similar. Beyond then, I still have a lot of learning to do!

Communicating

2011-05-14T16:43:00.006-05:00

Food on a tray, that sterile latex smell, two white boards & six trash cans in a 200 square foot space: I'm back on the transplant floor of Northwestern Memorial Hospital.

I checked in today to begin pre-transplant chemotherapy tomorrow, and prepare for the transplant on Wednesday. Everything is going smoothly thus far, and I have some updates and additional information that I wanted to provide so that I can stay in touch with you all over the next few weeks.

I am currently located at:

Prentice Women's Hospital

250 E. Superior

Chicago, Illinois 60611

15th floor - room 1596

Room phone (312) 472-1596

As I previously posted, I would love to have you come visit while I am in the hospital. Please feel free to call the room or my cell phone to check that there aren't any last-minute shenanigans going on. When you come, you'll need to wash your hands before entering the floor and sanitize your hands again outside of my door. And, if you have a cold, infection, even a sniffle, it's best to hold-off on the visit until my immune system is better.

Many of you have asked about the best address at which to direct mail. The hospital's mail system proved a bit problematic the last time around, so it's best to send items to my parent's home:

3112 Temple Lane (yes, I grew up on a street called Temple Lane)

Wilmette, IL 60091

It's strange to be back on this floor where I have not been for two and a half years. Many of the same doctors, nurses and staff are here, the room itself, though not the exact same as the last one, is quite similar. It's a bit surreal, a bit sad, a bit comfortably familiar and relieving after this marathon of preparation, all at once. So far, the biggest difference between the last extended stay and this one, is the technology that I have access to. I have a much newer and quicker computer, complete with a camera and the ability to Skype and video chat with friends and family (I'm ElissaFroman on Skype, by the by). I have access to a better wireless network here at NMH. And, thanks to an office building raffle and a lucky coin-toss, I have an Ipad upon which I can watch movies and TV, download books, and do just about anything else. I have lots of new ways to connect and communicate, and for that I am deeply grateful.

And thank you for all of your recent emails, cards, calls, texts, tweets, wall posts - your good wishes and prayers really mean more than I can say.

The Date is Set

2011-05-04T22:24:00.004-05:00

After many months, the stars have aligned: my bone marrow donor is ready to donate and, having finished my course of radiation this week, my doctor feels the time is right for me to receive the transplant. After I temporarily wrap affairs up at work, get my apartment ready for subletting, pack for what will likely be a couple of months in Chicago, and do the 101 things left on my to-do list, I will travel from DC to Chicago this Wednesday, May 11. If things go as currently planned, I will check into the hospital on Saturday, May 14 (day -4) first thing in the morning. On Sunday, May 15, we will begin my three-day pre-transplant protocol of chemotherapy and anti-rejection medications. Meanwhile, my heroic, anonymous, 21 year-old male bone marrow donor in Israel will donate his cells in Israel, to be flown to Chicago on May 17. Then, on Wednesday, May 18 (day 0) I will receive the bone marrow transplant - a wonderful and already note-worthy date in my annual calendar as it is the birthdate of two of my very closest friends, Abby and Gideon.

I plan to post more details about the experience of packing up life in DC temporarily, more on the radiation experience these past few weeks, and about how I am feeling about the prospects for success with the transplant, but for now I want to ask two kindnesses of you.

1) If you are able, please consider donating blood or platlets in these next couple of weeks. During the transplant process and in the days, weeks, and even months after, it is likely that I will need blood transfusions and platelet infusions to help get me through the experience. Before I became sick, I was proud to be a regular blood donor (it was not purely altruistic: the Red Cross HQ in downtown DC, practically on my college campus, had really good complementary snacks for donors) but now, for obvious reasons, can no longer donate. This has been a particularly sad byproduct of having cancer for me - and it would make me feel great to know that the people in my life went and donated in the weeks that I'm in the hospital. If you do donate, and you are comfortable sharing that, let me know or post a comment here on SWHAW.

2) Come visit me. If I've learned one thing about my healing process, it's that I am sustained, bolstered and energized when I spend time with friends and family. Thankfully, Northwestern understands this as a medically significant phenomenon, and thus, visiting hours on the floor (15th floor of the Prentice Building at Northwestern Memorial Hospital in Chicago - I will post an update once I know my room number) are 24/7, though my preferred visiting hours are about 11 am to 8 pm. The only barrier to visiting is that it is dangerous for me to be around you if you have any hint of a cold or infection.
Feel free to call or email me in advance to check-in, and know that you are very much welcome anytime. If the next couple of weeks are particularly busy for you, no worries - I will need company when I am recuperating after I'm released from the hospital, too. Friends outside of Chicago: I will be very excited for your visits both when I am in, and once I'm out of, the hospital, so if you've never experienced the magic of Chicago in the summer, consider a visit!*

*(This blog post brought to you by the Chicago board of tourism)

Op Ed: Balancing Budgets and Values

2011-04-19T15:54:00.008-05:00

Around March 29, simultaneous articles in the JTA, The Forward, and The New York Jewish Week, were published that all basically told the same story: Marla Gilson, a Jewish professional with whom I have worked, was fired from her job while she was undergoing treatment for leukemia, because she was sick and would not be able to work for several months as she headed toward a bone marrow transplant.

I was shocked by the injustices enumerated in these articles. Then, shock turned into a lot of conflicting, messy feelings. I couldn't fall asleep that night and stayed up cleaning my apartment, organizing books and dvds, and doing basically anything to distract myself from the overwhelming feelings of sympathy, anxiety, and disappointment I was having. Because reading those articles was as if someone had taken some of my worst fears and anxieties and written them down. As someone in such a similar position, getting ready to work in the Jewish community for what I hope will be a long lifetime and having just worked on some personnel issues for the organization I serve on its board of directors, it hit close to home in every possible way, and I felt sick over the situation.

At some point in the middle of the night, I sat down to try to do some writing to sort out the surging emotions and thoughts. The next morning, I called the author of the JTA piece to explain the depth of my connection to this story, and told him that I'd like to write an opinion piece on the issue. He graciously helped me figure out what that might look like, and on April 10, the JTA published the following op-ed:

Op-Ed: Balancing budgets and values
By Elissa Froman · April 10, 2011
WASHINGTON (JTA) -- The egregious treatment of Marla Gilson by her employers, the Association of Jewish Aging Services, in the wake of her cancer diagnosis struck some deeply personal notes with me. I am a colleague of Marla's; a Jewish communal professional; a board member of a Jewish organization; and a person with cancer facing a bone marrow transplant and extended medical leave from my job in the coming months.
Through my nearly five years in and out of treatment, my employers -- first the Religious Action Center of Reform Judaism and now the National Council of Jewish Women -- have been shining examples of Jewish organizations guided by progressive and Jewish values. Both organizations have chosen to exercise the values they espouse: supporting me through a difficult experience without wavering in their commitment to their own missions.
These commitments have manifested in my supervisors working closely with me to maximize the times in which I am able to work the long and full hours of a Washington lobbyist, and accommodating with grace those times when my schedule requires more flexibility. These reasonable accommodations have allowed me to continue to do the meaningful and effective work that advances the organizational mission. Working to advance causes that I believe in, on behalf of organizations that inspire me, motivates me to fight through my illness and ensures that I can continue to earn the livelihood and benefits upon which my life depends.
My experience also has given me a great deal to consider as a person serving on the board of directors of a Jewish organization. With Passover approaching, too many stories -- those published in major community papers and those shared over coffee or lunch with colleagues -- remind me that we in the Jewish community sometimes are each other’s Pharaohs. To honor the freedom for which our ancestors struggled, those of us in a position of power over the livelihoods of others must be radically just. I try to be mindful of the core principles that should inform how we, tasked with the sacred responsibility of governance and direction of Jewish communal organizations, must act.
We are instructed by the prophet Isaiah to be an "or l'goyim," a light unto the nations. To me, this is a call to both individuals and our community to model the highest ideals in the ethical treatment of our fellow human beings and our world. We have to make our employment standards even higher than those established by our country's civil rights laws. We must protect workers when they become ill, regardless of whether Jewish communal institutions are required to adhere to, or are exempted from, those laws.
We must reject the false dichotomy that argues that an organization can either treat its employees with dignity and compensate them appropriately, or it can thrive financially and otherwise. Indeed, the former is required to accomplish the latter. Jewish organizations must strive to be better than the dangerous race-to-the-bottom-line workplace practices of too many Jewish and non-Jewish employers, private and public, that the current political climate has yielded and the current economic climate has excused.
In my work at the Religious Action Center of Reform Judaism and the National Council of Jewish Women, I have learned that there is power in organizing, in advocating and in asserting Jewish values. Those values should shape our communal institutions, guide their missions and define their employment practices.
Let us be thankful for the many wonderful employers in our community who show us that it is possible to balance our budgets and our values.
(Elissa Froman is a senior legislative associate at the National Council of Jewish Women in Washington.)
I know that publishing this piece is unlikely to help Marla's situation, but it did help me. Writing it was a very cathartic experience, particularly mid-radiation, when ones voice is taken away in so many ways. I wanted to share it with all of you, as I continue to explore the meta-theme of work/life/cancer balance, here on SWHAW.

Shades of Grey

2011-04-09T20:11:00.004-05:00

I didn't have a blog when I did my first round of radiation. It was the summer of 2007, on the heels of my first round of chemotherapy, and that combination of treatment at GW succeeded in getting the cancer into a remission for a year. But it was also a terrible, and I dare say traumatic, experience. If I'd had a blog then, I might have been too raw to post anything about it - the early parts of the process felt so violating.

The first appointment to prepare for radiation is a grueling experience. I don't know that my experience was typical, but here is a brief summation of how it went. In order to ensure the precise positioning of the radiation beams, you must lay perfectly still for a painfully long amount of time on the machine while techs you've only just met literally poke and prod you, shifting you into the correct position. They then mark your body with permanent marker, drawing huge Xs, and outlining the radiation fields, until your body looks like a treasure map. In the center of the Xs, they put a drop of ink, then needle in a small, permanent tattoo, marking the spot where the laser must align. To cap off this already highly invasive and painful experience, they start snapping digital photos of your now bleeding, inked, Sharpied - and perhaps I neglected to mention - naked, body for their records, lest they need to know how to position you in the future. All of this while you are not allowed to move.

The first time that I had to have this initial appointment, no one walked me through the process and there was no forewarning before the tattooing. I ran out of the room sobbing, into the small and very comforting arms of my friend Gwen who was waiting outside the room.

Following this appointment, I had four weeks of daily 8:30 am radiation treatments in which they administered a high volume of grey to my chest and neck where there was still active cancer at the time. My appointments, followed by full days of work, were tough and exhausting - to say nothing of moving apartments and applying for and getting a new job during that month as well - but nothing rivaled the difficulty of that initial, terrible appointment.

It's an experience that has stuck with me: an unfortunately memorable low-point in the larger cancer experience. In the interim, I have thought often about how I might have felt empowered with a little more information and self-advocacy - especially about the tattooing process, a particular sticking point (pun intended) for me.

So recently, when my doctor decided that a course of radiation was the next step in my treatment plan before the bone marrow transplant, I reluctantly resigned myself to repeating the whole process, one which, in the interim 3+ years had become both a survival point-of-pride and had calcified into a small bit of trauma that has stayed with me.

When I went in for my consult with the radiation oncologist at Georgetown, I knew what questions to ask and what requests to make to try to improve upon the process for me. I asked for an alternative to tattooing, explaining my cultural and familial sensitivities. The staff could not have been more accommodating, immediately bringing the right person into the room, who presented the possibility of an alternative: Sharpied dots covered by a tegaderm, in lieu of permanent tattoos, which would guide the radiation beams. They walked me through the full process and answered all of my many questions. I was an ideal patient self-advocate. I felt empowered to make the choice about the tattoos and felt that I knew what to expect.

I again brought a supportive friend with me for that initial poking, prodding, using-my-body-as-a-sketch-pad, tattooing, photographing, appointment. I spoke up, met the techs in advance, and made the game-time decision to proceed with new tattoos for the three radiation fields (for an ultimate total of lucky 13), realizing that the challenge of maintaining the tegaderm for a full month and the potential toxicity of the radiation beam going through the plastic, outweighed the anxiety about having new tattoos. In short, the medical techs, doctors and nurses did everything right. I did everything right.

But the appointment was as miserable an experience as one almost four years prior, and ended the same way: with me bawling in the changing room with a friend.

In reflecting on this, I think that my take-away from the experience is that there are elements of treatment that are just black and white. They are painful and hard, and outside of my control. There's no happy twist to put on it, no way to make the medical procedure itself feel any better.

But I can still try to insert the shades of gray by mining the meaning and inspiration that comes from such a low point. I can try to insert the shades of gray by finding something to strengthen me and develop my character, during these next four weeks of daily treatments. I'll keep you posted on what I find.

Timeline

2011-03-06T20:48:00.001-06:00

"People plan and God laughs" - Yiddish Proverb

It's been six weeks since the last scans which showed mixed results from the first two cycles of SGN 35 therapy. Last week, we repeated those tests and found that SGN 35 is working, slowly but effectively, to decrease the cancerous activity. Lymph nodes in my chest, neck and abdomen, and in my right femur where the leg meets the hip, continue to be active, but are a bit better than they were six weeks ago.

As a result of these tests, we have come up with the following plan: we proceeded with the fifth SGN 35 treatment on Thursday, and will do the sixth in three weeks. My doctor in Chicago doesn't want to do any cycles beyond those six, because I am having a lot of pain and increasingly severe neuropathy as a result of the treatment and because there's not much evidence for increased effectiveness after six cycles. After that, I will have about three weeks of radiation to the spots that are still active - most likely to my chest, neck and hip. And then, theoretically, we will proceed to the transplant. I feel like this is the hundredth time that I have said so, but as soon as there's a date set, I will let you know.

This is the current plan, but I have learned from experience that it could change at any time. I continue to live, as I have for the past 14 months, planning only 3, 4 or 6 weeks in advance. It's not necessarily a terrible way to live, but there are some things that you just don't do when you're looking ahead to a period of transition. If you're don't know where you'll be in a month, you don't replace the Brita pitcher with the faulty lid or buy the 12-pack of Kleenex from Costco. If you're don't know where you'll be in a month, it's hard to RSVP for weddings, buy tickets for a favorite musician coming to town, or commit to working on a long-term work or volunteer project. This period from January 2010 until now has been a state of perpetual, possible transition.

Having the beginnings of a firm plan is a source of concurrent massive anxiety and huge relief - but I'm not penning anything into my planner just yet.

Status Quo

2011-02-05T21:41:00.002-06:00

The quest to get my cancer into as complete a remission as possible, so that the transplant has the best odds of success, is still underway.
I have completed three cycles of SGN-35. The test results following the second cycle were mixed - and my doctor felt that we should continue doing additional cycles (the recent phase two clinical trial results of the drug showed significant improvement after an average of eight cycles) and re-test after the fourth, in about four weeks. The results were a bit disappointing, but not surprising, and I remain hopeful that SGN-35 will help effectively minimize the existing cancer in the coming months. In the meantime, I've been having some serious neuropathy, but thankfully, after a day or so, all other side-effects are manageable.
So, at least through March, I will continue to travel to Chicago for a couple of days every three weeks for this out-patient, single day treatments.
Hope you're all staying warm and doing well.

The Healing Words & Music of Debbie Friedman

2011-01-14T15:35:00.010-06:00

Debbie Friedman passed away, fairly suddenly, at the age of 59 this past Sunday. For readers who are seeing her name for the first time, she was a Jewish singer, composer and leader; a unique voice in her generation.

If this was a blog for sharing all of my thoughts or those on my feminist and Jewish identities, I’d talk about her role in reinvigorating Jewish worship, (especially in the Reform Jewish Movement) which led to the type of services that inspired the first inkling of Jewish spirituality in me. I’d tell you about the feelings of pride that every kid who grew up at my summer camp had, knowing that she emerged from the same dusty roads and shvitzy tents as us. I could talk about my favorites amongst her songs and melodies, or share anecdotes about my limited but meaningful personal interactions with her. But most germane to the point of this blog, is her contribution and commitment to healing, and how that devotion infused her music and so much of the legacy that she has left.

There are so many examples of how Debbie’s words and melodies beautifully expressed the healing power of prayer. I’ll share just a couple:

Debbie often came to camp to teach and work with campers and staff to create meaningful Jewish experiences. My first summer as a counselor, about 9 years ago, Debbie led a song-session during our staff week in which she introduced us to a new melody she’d written for a verse from Psalm 126: “those who sow in tears, will reap in joy.” (Here’s a link to another song leader playing the melody). She repeated the song over and over - for nearly an hour, by some accounts. The intensity of the experience yielded a range of reactions. Some of the group of about 150, nearly all between the ages of 18 and 23, were so moved that they got teary or wept openly. For some, the intensity of the moment was too much and they got a bit giggly. I honestly cannot recall my reaction. But the moment and melody stuck with me. Since then, I’ve used that memory and the tune as a sort of mantra to power through particularly tough moments: that short verse, a promise of good things to come after periods of suffering.

There's little doubt that her greatest legacy is her version of the Mi Shebeirach, the Jewish prayer for the sick. I think that this prayer is part of every service in which the Torah is read including every Shabbat morning and is a regular part of Jewish worship. It is also said by congregations and individuals at times when healing is needed. Debbie wrote a version of the Mi Shebeirach, adding meaningful words, and a beautiful melody that is now used in congregations across the country, including, and far beyond Reform temples. There is a mystical, inexplicable healing power in the singing of Debbie’s Mi Shebeirach that is difficult to articulate with words alone. Rabbi Lynne Landsberg, Senior Advisor on Disability Issues at the Religious Action Center, and someone who has become a close friend and mentor of mine since I worked for her four years ago, is the survivor of a terrible car accident that left her on the brink of death over a decade ago. She wrote an article in Reform Judaism magazine, saying that when she was in a coma for six weeks following her accident, friends and family would come to her bedside and sing Debbie’s Mi Shebeirach. She writes, “I later thanked Debbie for teaching the Mi Shebeirach to the entire Reform Movement just in time for my accident. It was as if the arms of the Jewish community were wrapped around me, holding me tightly yet lovingly, keeping me in this world.”

Debbie taught her generation and my own to celebrate the shekinah, the Jewish concept of the divine feminine, to identify and experience that manifestation of God’s presence, and to call upon that spirit in times of transition and healing. I was thinking about this very concept when I learned that on Wednesday, Representative Gabrielle Giffords opened her eyes for the first time since the terrible shooting in Tucson on Saturday. Her friends, Congresswoman Debbie Wasserman Schultz, Senator Kirsten Gillibrand and Speaker Nancy Pelosi were all present in the room with Giffords' husband and parents during that extraordinary and miraculous moment. To me, part of the miracle was the power that friendship and sisterhood can have on a person’s healing process. In their account of the experience, Representative Wasserman Schultz and Senator Gillibrand describe the experience as so profound that I wonder if the shekinah wasn’t present in that moment, in that room. The energy that comes from having beloved friends, having some of our nation’s most extraordinary women, by your bedside, is healing. The energy that comes from a person hundreds of miles away sending renewal through the mystically powerful words of Debbie Friedman’s Mi Shebeirach, is healing.

Debbie suffered from chronic ailments for many years. I think that those experiences colored her world view and guided her career-long focus on prayer and music as a source of strength and healing. I think she captured her orientation beautifully on her website under the heading of “healing work.” She wrote:

“We are powerful. It is hard to remember that. Sometimes life takes its turns into the unknown and presents us with challenges we would have preferred not to encounter under any circumstances. Suddenly we are confronted with our pain. It is a strange thing that pain creates beauty and potential for healing. It is hard to imagine that it can provide a foundation for beautiful moments to arise. We attempt to find a way to manage survival from one minute to the next, as pain becomes the overriding force. When we are experiencing emotional discomfort, we need to find a safe place to express our grief and loss. The willingness to both offer and receive blessings of healing and well-being allows one who is wounded to transform and unravel their pain. Our pain need not bury us, instead it may elevate us to the point of healing - if we choose to allow it.”

These profound words reflect my deepest aspirations for how I hope I'm handling my cancer journey. To take the challenge presented and find beauty and potential for healing. To express my grief, to give and accept help, to be more elevated than diminished by the experience as a whole.

Tonight, the first Shabbat since she passed away, began. I hope that we all find comfort in knowing that she’s still everywhere, her melodies resonant and sung with spirit and love that will echo off the walls of thousands of synagogue, temple and communal spaces across the country and world.

In these moments of loss, of triumph, of pain, and in looking ahead to my transplant, coming up in these next weeks or months, in Debbie’s own words, I will try to remember that “pain creates beauty and potential for healing.”

Hitch

2010-12-17T06:45:00.004-06:00

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.

Experiment

2010-12-09T06:18:00.003-06:00

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.

Prevention v. Treatment

2010-11-26T15:34:00.000-06:00

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.

SGN 35

2010-11-22T17:34:00.000-06:00

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.

Test Results

2010-11-03T20:44:00.003-05:00

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.

Community

2010-10-18T19:30:00.004-05:00

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.

Knowns and Unknowns

2010-09-21T11:21:00.004-05:00

"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.

Coming Out of The Holding Pattern

2010-09-09T15:52:00.004-05:00

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.

Top 10 Books for Cancer Patients

2010-09-04T11:27:00.009-05:00

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.

6. Model Patient: My Life As an Incurable Wise-Ass by Karen Duffy

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.

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

2010-08-21T22:01:00.004-05:00

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

10. First Descents

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.

9. Imerman Angels

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.

7. Cinco Vidas

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.

6. Fertile Hope

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.

5. The New York Times Wellness Blog

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.

4. The Ulman Cancer Fund

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.

3. Smith Farm (and Commonweal)

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.

2. Planet Cancer

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.

SWHAW Gets a Facelift

2010-07-29T22:44:00.002-05:00

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.

The Experience of Becoming A Bone Marrow Donor

2010-07-23T21:39:00.000-05:00

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!

9 Weeks

2010-07-18T16:35:00.001-05:00

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.

Organize a Bone Marrow Donor Drive

2010-05-11T18:10:00.005-05:00

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

Calendars

2010-04-12T19:05:00.000-05:00

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.

Spring Break

2010-04-07T21:10:00.000-05:00

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.

Breaking You Down, to Build You Back Up

2010-03-29T22:00:00.000-05:00

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.

GVD

2010-03-25T11:10:00.005-05:00

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)

Two Ways

2010-03-04T17:22:00.002-06:00

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.

Six Months

2009-07-17T23:02:00.006-05:00

There were several times over the past few months when I thought about posting something here. The first time that I walked out of my apartment building and into the sun without a hat on, hair sprouting slowly but surely; after seeing my doctor in Chicago, and being told that there was no longer any sign of any cancer any more; the first perfect spring day in Washington when the whole city turns pink and white with cherry blossoms.

But this seems to be the right moment: an important milestone with several significant markings. Last wednesday was exactly six months since my stem cell transplant. The calendar of check-ups adheres closely to a prescribed 3-month cycle, that is always filled with seemingly strange coincidences. Major events always seem to occur on October, January, April and July 16th. My initial diagnosis, my final round of chemo the first time around, my re-diagnosis, my first chemo treatment, the transplant itself - scans and appointments also occur in these three month intervals, so that I somehow always end up getting a scan or having an appointment on or near these three month marks. Beyond treatment, other milestones seem to occur in coincidence with these dates as well. And so on July 16th, I found myself at such an interval – three months to the day before I turn 26, six months to the day after my transplant.

This occasion felt special in that in most ways, it was a typical day for me: going to work, conference calls and meetings, momentum as a bill I work on moves through the Senate. In other ways, the occasion was marked by timely coincidences: an opportunity the help someone else as they begin their experience with a stem cell transplant, the chance to help organize my office’s blood drive to help balance a national blood supply I needed to draw from recently (though the timing was a complete coincidence, scheduled months ago in honor of my boss’s nephew), and the amazing experience of attending my first Supreme Court nomination hearing the previous day.

In these past six months, much has gone back to normal, which in and of itself, feels miraculous. And in these past six month I have worked to redefine and shape what my new normal means, which has also been a incredible journey. When I first returned to DC over four months ago, my oncologist at Georgetown burst my bubble of euphoria by sharing some sobering statistics. He explained that because of the toxicity of the chemotherapy, and the dangers of radiation, I would always be at risk for a huge range of future medical problems. He told me that the likelihood of a secondary cancer, lung and heart disease, thyroid dysfunction, etc would always be higher for me. He gave me one more reminder that this experience has assured that my life will never be the same, and put in perspective a reality always simmering under the surface even in the best hypotheticals throughout my journey with cancer: my life is unlikely to be as long as I wish it would be. No matter how positive an angle I view the situation from, no matter how good I feel now that I am recovering and recovered, there is no going back to life before this experience.

In other words, while it is true that no one knows how much time they have on this earth, I have less than. What my doctor said were statistics and warnings, and a 5-year plan for tests and observation. What I heard was simply, “make it count.”

With deference to my continued recooperation, I can proudly say that I have spent these past months making it count. I have been diligent about taking care of my body – being active, eating more nourishing and natural foods, and trying to get ample rest. I have been trying to create: painting and writing. I have focused on my future, and tried to throw myself into my work, my volunteer commitments and projects in my job and beyond that improve my community and country. I have strived to be generous to the people I care about, and make my interactions with them meaningful and make our time, quality. I’m trying to make it count.

A half a year has flown by in some ways, and felt like an eternity in others, and perhaps that is just how it should feel. I haven’t made every moment count. I have let opportunities to enhance my life and the lives of the people around me, slip by. I’ve opted to watch the extra episode of the West Wing instead of going to the gym, and to leave work to go get a drink with friends, instead of answering that last email. But at least once a day, I am filled with gratitude for this time, and seized by an energy that is born of the ticking clock that looms over all of our heads, whether we hear it or not.

Six months out, this is my new normal.

What Has Changed

2009-03-02T17:12:00.002-06:00

Like most of America, I was dazzled by President Obama’s speech to Congress last week. I was amazed by what I saw: an executive branch seeking a partner in the legislative branch and the advocates for progress outside of the government, a chief executive who seems to sincerely want to make things better for the people who need it, and a President who inspires me. More than at any other point in these past months, I found myself excited in a bittersweet way – sad for having missed this time in Washington and the opportunity to see the change first-hand, but thrilled to get back to DC to witness it, and participate in it myself. When I asked a close friend and colleague what the biggest change has been in our work, he answered, “well, you know how we basically worked with Congress before? Now there’s a second branch of government that returns our calls.” This observation was simple, but also startling: I honestly come up short when I try to imagine exactly what working with the executive branch as a partner, rather than a foil, will be like. But I am beyond excited to find out.

Considering these past month's incredible changes, I can’t help but wonder how I have changed as well. When I return to DC on Friday, I will have been away for just under four months. I wonder, what conscious and unconscious changes have taken place within me? Will it be hard to pick up my life in Washington, up where I left it? Do I want to resume my life just the way I left it? And what changes have taken place in my DC worlds while I was gone? What changes will have taken place within my office? Amongst the coalitions I work with? What new strategies are being employed by the left now that the hills we're climbing are a little less steep? Will my social circles have shifted? Will my friendships pick up just where they left off, or will things feel different? How much have Gabe and Miriam grown? I wonder about the smaller changes as well. Do I have new neighbors? Will my favorite neighborhood shops and restaurants still be there? Have they fixed the traffic light at Connecticut and Florida Ave yet? Did Mr. Yogato add any new flavors?

I'm excited to report that I'll have answers to some of my question soon enough. I hope the positive changes that the entire city, and our whole nation is experiencing these days, set me on the right path, as well.

The DC House Voting Rights Act

2009-02-23T13:51:00.002-06:00

I have tried to keep my posts on this blog specifically separated from my personal and professional advocacy efforts, but today I am making an exception. I am posting a link to my guest entry on the Religious Action Center blog about the DC House Voting Rights Act, a bill that the Senate may vote on as early as tomorrow. The bill gives Washington DC a voting member of the House of Representatives. Please take a moment to learn more about it by clicking on the link, and please take the additional step of following the links within the blog to send a letter, or, even better, to call your Senators today, and ask them to vote for this important civil rights legislation! Click here!

And a shout out to the RAC's wonderful press secretary, Kate Bigam, for her encouragement and editorial skills!

Re-birthmarks?

2009-02-13T14:16:00.002-06:00

I have been home for about two weeks now, and am luxuriating in sleeping in my own bed, being unhooked from the IVs, and able to have some privacy and freedom of movement. I am feeling better everyday, and grateful that my immune system is bouncing back quickly. All signs indicate that things are improving very steadily.

While recuperation has been basically right on target, so have the side-effects. I have been tired, but feeling better as the days pass, and dealing with the residual impact of such a high dose of chemotherapy, including some stomachaches, headaches and nausea. But there have been a couple of surprises as well. Three days after getting out of the hospital, I began to have a sharp, steady, pain in one of my teeth. It got increasingly worse, resulting in me interrupting my doctor during a super-bowl party (which he was very nice about). I then interrupted our neighbor, an oral surgeon, during his super-bowl party (which he was also very kind about), who scheduled me for the very next morning, where I immediately had an emergency root canal. I wasn’t too surprised by this, as I had some dental issues after my first round of chemo two years ago.

The real surprise came a week later. I was brushing my teeth and looking at my face in the mirror, when I realized that something was…different. I leaned in, and first noticed two new birthmarks, one above my upper lip, and one on my chin. A closer look revealed several more faint freckles - to the right of my lips, next to my eye, and above my nose. An examination of the rest of my body revealed dozens more. Subtle enough that someone who didn’t know, well, the back of their own hands, wouldn’t have noticed, but absolutely new. I found this side-effect pretty remarkable. I asked my doctor about it, and he explained that this change in skin pigmentation is a rare, but possible side-effect of one of the most recently administered chemotherapy drugs.

The doctor also gave my freshly-freckled self other exciting news. If my next set of tests, in two weeks, show that my immune system is continuing to improve, I can return to Washington shortly after!

Light at the end of the Tunnel

2009-01-28T09:24:00.000-06:00

Today is my 20th day in the hospital, and hopefully, the last. After the stem cells went back in, I was told that it would take 10 to 14 days for them to begin working and my immune system to begin improving. The counts indicating that improvement, began to go up in the last 48 hours, and so the transplant itself has begun to work! Hopefully, I will be able to continue getting better at home in the next few days, and then start slowly getting back out into the least crowded, and therefore least germy, places around town.

My experience in the hospital has been surreal. I am deeply grateful to have been at such a high quality facility. I have found, not surprisingly, that the essence of the hospital's quality is in its staff. Hundreds of people contribute to my well being every day. From the nurses to the patient care techs, from the people who prepare and deliver my meals, to the ones who stock the supply shelves, to the pharmacist that fills my drug orders. I am very grateful that they made this experience as positive as it could be, but I am really looking forward to being home, able to sleep through a night without being woken up every couple of hours, able to feel some sense of privacy, and hopefully to soon feel my energy restored!

Playing the "C" card

2009-01-18T09:30:00.000-06:00

Many of you are very aware of what the "C" card refers to, because you've seen me play it a time or two. Perhaps I have even whipped it out and used it on you. I'm not sorry. We all have the hand that we were dealt, and since I got stuck with this one, I should get to play the card when necessary. That's how you win the game, after all.

Did I take the metaphor too far? Too bad. I have cancer.

The truth is, I try to be prudent in my use of the card. I was reluctant in the early days, when I was first diagnosed, to play it at all, because I was trying so hard to just have a normal life. I didn't want to feel distracted at work, distant around my friends, or short with my family. I didn't want to need the excuse or explanation as to why I was feeling those things. But not playing the card was sometimes detrimental. At the time, I commuted to work every morning on the metro. Most mornings, when I stepped onto the red line train at Judiciary Square, the train would be full. Stoically, I would stay standing, even if I was so tired I felt like my legs were wobbling more than the train. At work, I would get defensive if I felt an assignment wasn't being given to me because my colleagues and supervisors were trying to protect me from too much work or stress. In lines, at parties, on people's birthdays and special events, I powered through. Asking a healthy person to give up their seat, acknowledging my need for shorter work hours, and backing out of plans when I needed to, would have all been reasonable for someone with cancer, but to play the card in those moments, felt like an admission of vulnerability that I wasn't ready to acknowledge.

And then, I had a year of remission. And in that year, I gained some important perspective. I began to see those decisions through the eyes of someone healthy again, and realized that I had done myself a disservice by failing to acknowledge my needs. I looked back at the moments when I had played the card, casual moments when it was almost always a joke – calling shotgun in a friend's car, picking where we were going for lunch, justifying a crude joke. I couldn't – or at least didn't – acknowledge the cause and effect relationship between being sick, and the daily physical and emotional challenges I faced. And I think I was scared that if I played the card when it counted, the response I would get would be disappointing. After all, the first time I desperately needed someone to act unselfishly, I was met with a crushing disappointment, when my close friend/roommate announced that she was moving out five days after my initial diagnosis.

A few days after being re-diagnosed, I found myself on the phone with a United Airlines ticketing agent. I had to change my flight home for Rosh Hashanah, because I needed to stay in town for testing and a bone marrow biopsy. The agent informed me of the financial penalty associated with last minute booking changes, and I found myself feeling sincerely justified in playing the card this time. I told the agent the last minute change was necessary because I had just been re-diagnosed with cancer. And to my surprise, she waved the fee without another question and wished me good luck. Several weeks later, the American Airlines agent with whom I was re-booking my flight home for Thanksgiving, did the same. I felt, on some level, as though I was abusing my situation, but the truth is, those tickets were actually being re-booked because of scheduling changes that could not have been foreseen.

Similarly, when I realized what this treatment was going to entail, I knew that powering through and missing only two days of work during every round of chemo like I had the first time around, was not going to be possible. I was, as with the airlines, but a hundred times more so, relieved and surprised with the graciousness, kindness and generosity of my employers when I realized I had to take some medical leave. And I am learning constantly, in ways big and small, that at times, it is wholly healthy and self-preserving to play the card.

Re-Infusion

2009-01-15T09:02:00.007-06:00

Today is the big day. Everything up until now has been building toward the day that the stem cells go back in and do to their little stem cell magic (additional explanation here). I must admit that up until now, I had not been viewing this day as the big milestone that my physicians had been building up (the instructional binder states that many patients think of it as a second birthday) but I find myself excited this morning. Maybe not as excited as I usually get for my birthday - there's no Neil's Hat Trick from Cake Love after all - but excited for the ending it may mark, and end to these 2+ years of life being being chased by this cancerous shadow. An end to the worry, stress and pain of all of this. So bring on the end, which of course marks a new beginning.
Thanks, as always to all of you for your calls, notes, and packages - the unpleasantness of this whole experience is infinitely eased by your love.

Coping Mechanisms

2009-01-11T21:03:00.002-06:00

Sometimes, to overcome a temporary moment of pain – small pains, like getting a shot, a burning injection, removing medical tape, etc - I like to think of specific pleasant thoughts or images in advance to distract me. Devoting my mental energy toward conjuring this image is empowering, and allows me to feel some modicum of control over a situation in which I really have none. In the weeks between this re-diagnosis and starting treatment, the weeks leading up to the election, my positive image was clear. Right before the needle went in, the test began, the barium was drunk, I would picture: Barack Obama, standing on the balcony of the United States Capitol, with his hand on the Bible, being sworn in as President of the United States by Ruth Bader Ginsberg (I know, I know, she's just an associate justice, but this was MY positive image, and John Roberts was not welcome). During more drawn out physical challenges, like scans that require staying perfectly still for an extended period of time or biopsies and other surgeries and procedures where I am only partially sedated, I try to visualize images that keep me calm. Usually the image I conjure up is rooted in a memory from camp: sitting in Mosh field or on Bayit Hill on a warm, sunny day with a nice breeze. Other images and moments cycle through: a snowball fight during the first big snowfall during my Freshman year of college, laying on a beach in El Salvador looking up at a star-filled sky so different from the one I was used to seeing, the slow movement of the Negev desert as I walked on a silent hike, my mom waiting by the baggage claim area at O'hare airport whenever I come home. These are the images that are most potent, most powerful and most soothing. I feel so lucky to have those memories that fill me with so many positive feelings.
And in between those moments of conscious coping, I suppose I employ a hundred other coping mechanisms without realizing it. Regretfully, I use avoidance, transference, distraction and denial. Thankfully, I utilize friends, family, funny movies, good books. I hope that when I look back on this time, I will feel as though I was living with an awareness even as I let myself fall back on the coping mechanisms that are easier, but not always better.

Day Four

2009-01-11T13:47:00.002-06:00

Things are going well. The staff and amenities are continually impressive. I just finished my third day of chemo, and so far haven't had any terrible side effects. By the numbers, I've been in the hospital for 4 days now, which, in the language of the transplant, actually means day -5 (day 0 marks the re-infusion of the stem cells). My room contains seating for 5, 2 flat screen TVs, 6 garbage cans, 2 sinks, and 2 picture windows, through which I can see a sliver of Lake Michigan and Lake Shore Drive. Thanks to those of you who've stopped by, written and called.

The Transplant

2009-01-05T23:59:00.005-06:00

After a considerable amount of preparation, in the form of biopsies, tests, scans, small battles with the insurance company, salvage chemotherapy, and a whole lot of emotional ups and downs, I am finally entering what I hope will be the final phase of this experience – the stem cell transplant.

The term transplant almost seems like a misnomer for what I’ll be doing and has confused a lot of you. I guess that the term seems to imply a surgical procedure to most people (including me when I first heard it) but in my case, there is no surgery involved. I will check into the hospital this coming Thursday, January 8th, if all goes as planned, and immediately begin about a week of very high dose chemotherapy that will wipeout my bone marrow and white blood cell count. Since these cells could not rebound on their own, I am then injected with 5 million of my stem cells (already collected and waiting in the trusty Northwestern Hospital freezer) which will hopefully begin producing healthy white blood cells. The remaining time in the hospital is to ensure that I stay free from infection, and that my cells graft back to my body and start working again.

I am experiencing a lot of emotions as Thursday approaches. The past couple of months have felt like the crescendo in a piece of music that has finally reached its climax with this procedure. I am afraid - more for my lack of mental preparation in dealing with three-plus weeks of complete confinement to the 15th floor of the hospital than anything else. Will the lack of fresh air make me depressed? Will it be exacerbated by constant monitoring? Will I be frustrated to be hooked up to an IV for a month or more, or will I be too tired to want to walk around anyway? I am curious about how it will feel – whether it will be painful, where it will hurt. Will my port, the line I have had placed to make infusion easier two years ago, which I’ve only ever had accessed for three days at a time, be sore during the constant access? Will I feel the stem cells working? What kind of side-effects will present most severely for me? Do I have the tools to cope? Whatever is coming, I am eager to get to it, complete it, and put this chapter of my life behind me, taking the lessons and strength I hope I’ll gain, and leaving the stress, pain and discomfort.

Though I don’t have full details, here are some relevant hospital rules as I understand them. Visiting should be permitted throughout my weeks in the hospital, and visiting hours are 24/7 on the transplant floor. It is possible that you will be asked to wear gloves and/or a mask when you come into my room because of germ transmission, but I should know that in advance based on how my immunity is. And flowers are not allowed on the floor at all. I can’t have any fresh fruits or vegetables, but otherwise, to my mom’s great relief, outside food is permitted as long as it’s not raw or improperly cooked. They should know better than to get between a Jewish mom with chicken soup, and her sick child.

**Contact information updated**

I am on the 15th floor of the Prentice Women’s Hospital. The address is: Room 1593, 250 E. Superior Street, Chicago, Illinois 60611. I have my cell phone with me, and can be reached directly in my room at 312 472 1593.

I hope you all had a wonderful New Year's Celebration - I got to celebrate with many of my closest friends, who came to Chicago to visit, which was a fabulous way to start my year!

Nursing

2008-12-27T14:34:00.003-06:00

I warn you that this blog entry is going to read like those Johnson and Johnson ads, about the importance of nursing, that always make me cry, but it’s a subject matter truly close to my heart. Cue the sepia toned images and slow piano music:

Nursing is, hands down, the most underappreciated, difficult, precise, and noble profession that I know of. I have encountered so many incredibly kind nurses – some I have interacted with for mere minutes, and some have been with me for a longer part of my journey. Every single one provides essential medical services that require a lot of training and knowledge, and many have gone beyond to provide comfort, calm and patience at critical and difficult moments. Over the past two years, I have had literally hundreds of nurses participate in my treatment. I never learned some of their names, and have forgotten others, and there are some that I’ll remember for the rest of my life. I have been thinking about how deeply and positively I have been impacted by nurses, and thought I’d share a few specific examples:

Days after my initial diagnosis, I had to go in for a second PET/CT scan. Now, since these first two rounds of tests, I have learned what is standard in the world of required Barium consumption. George Washington University, Georgetown University and Northwestern University Hospitals all agree that two 16 oz bottles is quite sufficient for accurate imaging. But at Washington Radiology Associates, I was told I needed to drink three bottles in the waiting room. Now, drinking 48 ounces of anything in one sitting is a bit of a feat, but Banana flavored barium sulfate suspension is another thing entirely. When I finished, I was feeling pretty sick. When I was taken in the back for a blood test, there was another tumbler of it waiting for me, and I don’t know why, but at that moment the façade of emotional stability that I had been faking for a couple of days broke, and I burst into tears. And the nurse standing there waiting to take my blood didn’t recoil, didn’t awkwardly wait it out, didn’t try to patronize me – she threw her arms around me, patted my back, and soothed me by talking about a patient of hers who had Hodgkin’s ten years ago and had recently come in to visit with her two children and how well she was doing. She simply knew exactly what to say to comfort me, and I have thought often of what she said, and how she said it, and how much it meant in that moment.

More recently, when I was about to begin the stem cell collection process, I went in for an initial consultation and for some lab work. I met with a nurse that really rubbed me the wrong way – her manner was harsh, and she made me wait an hour for an appointment I had with her to go over paper work – an appointment that ultimately took less than ten minutes. I wasn’t looking forward to spending up to five days with her the following week. But when I arrived Monday morning, I discovered that a different nurse named Cheryl would be handling my collection. Cheryl was the type of no-nonsense and take charge person that inspires immediate confidence in her patients, and she was a great conversationalist. Over the course of a long two days, I really enjoyed getting to know her. More than anything, having her there to answer my questions and make me feel confident about the process and procedure I was undergoing made me feel much more positive about the experience than I felt when I walked in that first day. My attitude had everything to do with my confidence in the care I was receiving.

Erin, was the assistant to my DC Oncologist when I first transferred from GW, to Georgetown, a few months ago. She made everything so easy, scheduling appointments, dealing with insurance companies, and being so competent and gentle in her handling of my case, that for the first time since my original diagnosis, I felt as though there was safety net in place if I dropped any of the many balls I was juggling. It made the system feel entirely different from GW’s and literally allowed me to sleep better at night.

Similarly, the transplant coordinating nurse, Jenny, at Northwestern inspires the same confidence. She always makes me feel as though I am her number one priority and is organized, clear, and always on top of a process that is wholly new and scary to me. She makes me feel confident about the system in place and Northwestern. Faith in that system gives me an immeasurably good and safe feeling, and is something that I think is critical to my well-being right now.

Sue was a night nurse at Georgetown (meaning she was assigned to check my vitals, administer my chemotherapy, and generally take care of me from about 8 pm to 8 am), who was one of many caring and attentive nurses and wouldn’t have stuck out in my memory if not for the fact that she communicated very well and effectively with my mom. She inspired a trust that allowed my mom to feel that when she left the hospital overnight, I would be well cared for, and that was a wonderful gift.

Reflecting back two years to my treatment at GW, every single one of the nurses was kind, attentive and caring, which actually almost made up for how little attending and caring my doctor did. Almost. But the nursing staff was great, from Marie who always took my vitals and blood in the front lab, and whom I looked forward to seeing and chatting with at every appointment, to Mary, the business manager who reminded me in every way of my friend Sarah’s mom, to the team of petite, blonde nurses who administered chemo whose names all began with K’s – Katie, Kathy, Kirsten. But one nurse made all the difference. Kyra started administering my chemotherapy drugs – each lasting 6 hours – on my second of twelve treatments, and the adoration was immediate and mutual. Kyra was confident, and made me feel like I was in safe, capable hands. She quickly became familiar with my family and my friends. Some mornings, I would actually find myself looking forward to going to the clinic, because with Kyra there, it was as if I was just keeping a social engagement. She made me feel like I was her favorite patient, her most important patient. In a clinic where it’s unfortunately easy to slip through the cracks, she made me feel like I was a priority. My friends loved her - Kyra discussed dansko clogs with Emily, talked sports with Betsy, and talked about medicine with Jill. She always made sure to keep my favorite chair in the infusion room open. She would return my calls straight away when I had questions, and gave me her cell phone number so that I always had an easy way to reach her. She told me about her family, her dogs, her home renovations, and shared stories from her own life and for the first time, I felt as though a medical professional wasn’t approaching me like a mechanic approaches a broken car – she felt comfortable exposing her own humanity to me, and that made me feel like a human. I tried to spread treatments out amongst different friends when my family wasn’t there so no one had to miss too much work, and I think in the end, something like a dozen friends came with me. Nearly all of them made some variation on the comment: “I know this is really inappropriate, but I’m sorta of having fun”. Kyra is why those days were not only bearable, but sometimes sorta fun.

So when those Johnson & Johnson commercials come on, I tend to tear up. Because I have had so many powerful examples of the positive difference that a nurse can make in the life of a patient. And for that I am deeply grateful.

Naomi’s Marathon

2008-12-22T17:54:00.002-06:00

Let me begin by wishing those of you celebrating this week, a Happy Hannukah, Merry Christmas, and Happy Kwanzaa.

I wanted to let you all know that my friend Naomi Wolf is running in the New Jersey Marathon on May 3rd, through a program called Team in Training, which raises money for the Leukemia & Lymphoma Society. She is running in honor of both me, and her mother, Betsy, a survivor of non-Hodgkin Lymphoma.

Here’s an excerpt from an email she sent her friends and family that explains a bit more about her efforts and gives information about ways to help her fundraising efforts:

“As the world's largest endurance sports training program, Team in Training has done its part in trying to find a cure for cancer by bringing over 380,000 volunteers together and raising more than $900 million since its creation in 1988.

In order to support this wonderful cause, and to get me across the finish line, I need your help! Please make a donation to help me reach my goal of $2,600 to help advance LLS's mission. All donations are officially due by March 15, 2009. You can make a donation online at my website: www.tinyurl.com/nwolfmarathon or you can mail cash or check (made out to the Leukemia & Lymphoma Society) to my home address: 205 W 88th Street, Apt 11G, New York, NY 10024. Your donation is 100% tax deductible.”

Thanks to Naomi for taking on this huge challenge, and thanks to those of you who are able to support this important cause through your contributions.

Warning: These Drugs May Alter Your Ability to Send Coherent Emails

2008-12-20T13:27:00.002-06:00

I did my third round of chemotherapy last week, which ran through the weekend, and hit me harder then any of the previous 14 treatments. Fortunately, the worst of it has passed, and I am feeling a lot better.

I finished the three day treatment on Saturday night, slept straight through Sunday and Monday, and only vaguely remember Tuesday. One of the side-effects of a drug in the chemotherapy cocktail I have been given, is disorientation, which typically manifests worse in older adults. I was convinced I had avoided this side-effect altogether, until Thursday, when I sent my friend Debra a card to apologize for missing her birthday last Saturday. As it turns out, I didn’t miss her birthday, I just didn’t remember emailing her. A quick scan of my gmail sent folder revealed that I actually did quite a bit of correspondence on Saturday...and I’d like to take this opportunity to publicly apologize for any content therein.

Just prior to starting chemo, I completed the remaining diagnostic tests and received the results quickly, thanks to the excellent team of doctors, nurses and techs at Northwestern. The scans revealed that chemo has worked very well, and that I am near a complete remission. These are the best test results I could have hoped for, heading into the transplant, as the efficacy of chemo is the best indicator of how successful the transplant will be. I am hoping to start the transplant as soon as possible, though my body has to rebound from this last round of chemo before beginning the process, which may take a couple of weeks. I was really relieved and happy to get these good test results – and happy to be able to share the good news with all of you.

Treating Side Effects Appear to Lead to Additional Side Effects

2008-12-10T19:44:00.000-06:00

As is often the case with a big day of medical testing, not everything was able to get done exactly as planned. In this particular case, medication I was prescribed to take to offset an allergy to a an injected dye required for one test (it's a shellfish-based dye, and I've been slowly developing an allergy to it over the 12+ times I have had to have it, which I think is related to the fact that for a couple thousand years, my ancestors didn't eat shellfish?). That medication had an unforeseen side effect that made me ineligible to take another test I needed in order to complete the re-staging process. So I have had to wait to take that test until tomorrow.

But after receiving some of the test results, some conclusions could be drawn. The doctor indicated (tentatively) that this round of chemotherapy has been working, though I will need one or two additional cycles of it before proceeding to the transplant. Depending on test results tomorrow, and on the availability of space in the clinic and hospital, I may begin this third round of chemo as soon as tomorrow afternoon, December 11. Thanks for your good luck texts, calls and emails during this round of testing. I'll do my best to update the blog more often and do a better job of keeping everyone in the loop, but I wanted to let you all know about this possible next round of chemo beginning tomorrow in case you don't hear from me for the next week.

Stem Cell Harvest

2008-12-07T22:11:00.001-06:00

The stem cell harvest was completed last week, and was successful. Over the course of about 11 hours hooked up to the machine, I collected 9.37 million stem cells. The high end of my excellent transplant team’s goal was 10 million, so they seemed very pleased with the results, and if they’re happy, I’m happy. The next step is to re-stage the cancer to determine how the two rounds of chemotherapy have worked. That process begins tomorrow, with a CAT scan, and a PET/CT scan. I will see the doctor on Wednesday to get the results of these tests and to determine next steps. My current understanding is that if the news is great (the cancer is in a full remission) then I will begin the transplant immediately. If the scan shows that there has been some success with chemo, but it has not been completely effective, we may proceed with additional rounds of chemotherapy (and there’s a slim chance of more radiation being used). If the cancer isn’t better, or is worse, then we reassess the full plan. Whatever happens, I will post an update sometime Wednesday or Thursday.

In the meanwhile, I have been keeping busy and distracted and enjoying home and the city as much as possible. It’s been snowing a lot here, and I am re-learning how to not drive like a DC resident in the snow (sorry everyone, but you have to admit that DC drivers are wussy about snowy weather!), spending lots of time in the city doing cool stuff (my insider tour of the Harpo studio was a highlight this week! Thanks Katie Baker!) and enjoying lots of out-of-town visitors (a planned visit from Emily and Julie, with surprise visitor, my college roommate Erica!) It is also really quite nice to be able to sleep as much as I need to, rest when I feel like it, and not have the pressure of maintaining too busy a schedule when I feel sick.

In addition to this brief medical update, I've posted the letter I previously mentioned receiving from then-candidate, now president-elect Obama! If you click on it, it will open in a new window, full sized. I can’t wait to see what an administration made up of the people coordinated and talented enough to respond to what I guess one could call campaign constituent needs, is going to do to make change in this country.

The Latest from the Windy City

2008-11-18T20:00:00.000-06:00

Last week I had my second round of ICE chemotherapy in both the outpatient and inpatient departments of Northwestern Memorial Hospital. Thanks to some different anti-nausea drugs, this round was a bit easier than the first one, and I'm feeling pretty good.

Things will be relatively quiet for the next week, and then I start giving myself shots to stimulate the production of stem cells in my bone marrow, and taking medications to get those stem cells to move to my blood stream. And then, next Monday, the 24th we begin collecting them. That harvesting procedure will be outpatient for a few hours each day, and most likely over the course of two or three days. I was going to explain the whole process on here, but actually got a bit sqeamish, so if you'd like more information, I found this link which is pretty comprehensive. I also found a picture of the machine used for the stem cell collection on flickr. I especially enjoy the expression on the face of the technician or doctor next to it. My thoughts exactly, guy.

If timing works out as I hope, I will be able to join my family and friends for Thanksgiving, before repeating diagnostic scans the following week which will determine whether we're proceeding with the stem cell transplant immediately, or doing additional rounds of chemotherapy before the transplant.

Thanks to everyone for being in touch. It's been really nice to hear from all of you, and see those of you here in Chicago. I hope you all have a very nice thanksgiving!

Hair

2008-11-09T05:07:00.000-06:00

Hair. I have always had a lot of it - thick, curly hair that I mistakenly brushed out as a kid but it was the 80s, so thankfully, I blended in. My eastern European genes also meant a unibrow that made me look like a cross between the Super Mario Brothers, and Burt from Sesame Street, so around age 12 I started waxing 'em. If you've met me only in the past thirteen years, I assure you what's currently sitting above my eyes is 1/10th of what once resided there. As I got older and headed off to college, I learned new and exciting secrets of hair maintenance from my similarly blessed sisters, and waxing, plucking, straightening, gelling, and mousing have been part of the routine ever since.

Since hair tends to get a lot of my time and attention, I appreciated the irony of how difficult it was, at the age of 23 to cope with the temporary alopecia that accompanies many types of chemotherapy, including my ABVD regiment. My sister got me a whole bunch of fabulous hats, scarves and head shmates, and as my hair thinned, I wore them, got used to them, and even tried to appreciate the additional accessory. And significantly, my hair didn't completely fall out, which actually allowed me the ability to look almost like I was just accessorizing. Maybe I'm fooling myself, but there were a lot of days in those 8 or so months, where I really enjoyed feeling like I was passing for someone normal and healthy. Though usually I just ended up getting mistaken for a married Orthodox woman - resulting in some priceless awkward moments, including one with a certain ambassador from a small, democratic, Jewish state in the Middle East.

But in private moments, before the hat went on, as I looked at myself in the mirror, as I showered, as I combed my hair, the loss of that identifying marker, that hair which I had done battle with and had learned to love, was incredibly difficult. And moments that a person with a full head of hair could experience - sleep-overs with guests, sharing hotel rooms with co-workers as I traveled for my job, respectfully removing head-wear during the national anthem, hanging out with roommates just before bed, or just a swift gust of wind - became another completely new and difficult-to-manage circumstance.

The head nurse at the GW Cancer Clinic, Kathy, told me just before my first round of chemotherapy that she thought women looked beautiful bald. Regardless of whether I agreed, I found myself thinking often about that statement as a source of inspiration and comfort. And I told myself over and over that it would grow back, and indeed, it did.

I began chemo 16 days ago, and, as I was told it would, my hair began falling out on day 14. The past 72 hours have been a repeat of what I experienced the first time around, only highly accelerated - my hair hasn't thinned slowly over the course of weeks and months this time. At first it was clumps in the shower, and the minor trauma of watching dozens of hairs at a time swirl toward the drain. Then, throughout yesterday and today, absent-mindedly twirling a curl around my finger meant pulling out that curl, still fully intact. Each time this happened, I was caught totally off-guard and felt a panicky shock. And the past two nights, I have woken up nearly every hour, to feel my pillow to see if it had all fallen out, as is very common in chemotherapy patients.

Around 1 am tonight, (this morning?) I just couldn't take the hair falling out all over my apartment and out in public, and I felt that I couldn't cope with another night of interrupted sleep. The inevitability of my total hair loss, in just a couple more days regardless of how much I washed it or touched it became clear. So I stood in front of my bathroom mirror, and gently ran my fingers through it, feeling the curls simply give way in my hands, like when you very gently touch the petals of a flower that's dying and they drop off so easily. It was such an odd, surreal sensation. I ran my hands through my hair over and over again, piling hair in the sink, until I looked down at it and found myself staring at the back of my own head. It will grow back, I said aloud, it will grow back, it will grow back, it will grow back.

It's an astonishing thing to look into the mirror at a reflection of yourself that you haven't ever seen and never imagined you would - I guess the feeling is akin to dying your hair a radically different color or getting a piercing or maybe the first time you see your body after giving birth. Even if you knew a drastic change was coming, maybe even elected to do to yourself, the transformation still surprises you. And I tried to look into the mirror and see what Kathy sees when she looks at a bald head - something different, but beautiful. I wish I could, and maybe when the shock wears off, I can work toward that goal. But right now, all I can do is try to stop crying and try to get some of the sleep I was seeking by taking things into my own hands in the first place.

Change

2008-11-05T15:11:00.000-06:00

My original treatment plans have changed and I will actually be heading home to Chicago this coming Monday, Nov 10 for the duration of treatment, both the rest of chemotherapy and the stem cell transplant. This new plan is primarily the result of my insurance company’s requirement that the round of chemo proceeding the transplant occur in the same location as the transplant itself, and since the doctor isn’t sure if I will need one or two more rounds, they wanted to be on the safe side and do the rest of treatment in one place. I went to Chicago last Thursday to meet the doctor and team that I’ll be seeing at Northwestern University Hospital downtown, and got a very good sense of their excellent program and facilities.

I’m incredibly sad to be leaving Washington for these months, but relieved, euphoric, and excited about returning to work with the Obama administration and Democratic majority to follow through on all this change and hope business. I want to take this opportunity to congratulate everyone on the outcome of this historic election, and thank all my friends who have been working full-time on this campaign – Jenny, Becca, Matt, Erin, Gwen, Julia, Josh, and to the many more of you canvassed, made calls, donated your time and money – you have secured a better future for the whole world and should be incredibly proud of your hard work! And I thank those of you who read my initial email and took the time to call your friends in swing states, and forward my thoughts to others. Evidently, the emails made it pretty far, because just before going into the hospital for my first round of chemo, I received an extraordinarily kind letter from Senator (and now President-Elect!) Obama himself, thanking me for my efforts on behalf of the campaign and wishing me luck with treatment. Needless to say, this meant the world to me. I will scan and post the letter shortly.

Leaving Washington is going to be very difficult. The ability to stay in DC two years ago, the first time I went through treatment, allowed me to maintain some semblance of a normal life. It felt good to deny the cancer the right to subsume all my hours, thoughts and energy by continuing to work and play even in a diminished capacity. In some ways, going home to Chicago, taking a leave of absence from my job and my volunteer work, and leaving my friends, feels a little like giving over the reins of control.

Despite being sad to leave here, there are many things to look forward to in Chicago. I am grateful for the opportunity to spend a lot of quality time with my whole family, and lots of friends I don’t get to see as often as I’d like. I think it will be helpful to focus more fully on treatment and recovery without trying to integrate it into my life as one more commitment to juggle. I am looking forward to making my way through a long list of books I have been looking forward to reading. And, honestly, I’m looking forward to having the amenities of my parent’s wonderful home at my disposal because as tough as I like to think I am, I can’t deny that my mom’s car is an easier way of getting around than the public bus, and a washer and dryer off the kitchen is more convenient than a coin-operated laundry in the basement of my apartment building.

I’ll be leaving for Chicago on November 10, in chemo at Northwestern from November 11– 13.

Birthdays

2008-10-23T00:02:00.000-05:00

My birthday has the distinction of falling in a season full of family and friend's birthdays. The season kicks off with my mom's in late September, followed just three days later by my sister's, then it seems like there are friend's birthday parties and dinners every week until the middle of November. I shared a birthday month with lots of friends in college, and in both very small offices I've worked in since graduating, I have had the same birthday week as several colleagues. And all these birthday celebrations always work well in tandem with the Jewish calendar since the world itself celebrates a birthday in the very same season, reminding all of us to look back on our experience the previous year, and pray for a good year ahead.

The truth is, for the past 3 years, my birthday has been fairly bittersweet. My 23rd was celebrated just three days after my first biopsy and two days before my initial cancer diagnosis. After a tearful early morning goodbye with my family, friends arranged dinner and everyone worked hard to keep the mood light. Last year was more celebratory - an affirmation that I had made it the murky distance between 23 and 24, finished chemo, radiation, moved apartments, finished my fellowship and began a new job, and could start picking up where I left off, even more equipped with a deeper sense of appreciation for the mundane, the extraordinary, and the opportunity for another year. 24 really felt like a fresh start, and it was a wonderful year.

This year, my 25th birthday, was full of fun, including lots of celebrating, wonderful cards, calls and emails from lots of you, friends in from out of town for the weekend, and my best friend Abby in from Israel for nearly a whole week. Yet through it all, there was an ever-present dark cloud heavy with the one question that I can barely bring myself to ask aloud: will this be the last birthday I celebrate? And though I know that everyone who called, wrote, came for dinner, attended a joint party with two other friends on Saturday, and even schlepped to DC for a fun celebratory weekend, were sincerely there to celebrate, I couldn't help but wonder if the question wasn't on their minds too.

During the days of awe in the Jewish calendar, I always find myself struck by the fact that Rosh Hashanah, the celebration of the new year, precedes the retrospective, solemn holiday of Yom Kippur. Why would you ring in the New Year with a celebration, and then go through the remorse and contrition of the Day of Atonement? Wouldn't it make more sense for us to spend a day (or ten) reflecting on all that we did in the past year, good and bad, and then start fresh, with a clean conscience and new commitments for the coming year? I'm still not sure I understand the wisdom of this order, but this year, I find myself thinking about how this relates in my own life, to the juxtaposition of my birthday and treatment. I start chemotherapy one week after my birthday - and that made my birthday feel sort of strange: similar to the way that I always feel on Rosh Hashanah - perhaps for the same reasons that the Jewish New Year always feels more heady than secular new year celebrations. The holiday of Rosh Hashanah is a celebration at it's essence, but with a fairly big helping of remorse, of sadness, of a promise of redemption, if only you're willing to work for it. But then, I suppose that Rosh Hashanah tends to temper the blow dealt by a day of guilt, atonement and repentance too. The sweetness of apples and honey is supposed to stay on your lips even as you beat your chest and repent for a year's worth of regrets.

The sweetness of a wonderful birthday celebration will still be on my mind and in my heart when I start chemotherapy tomorrow. And it was a wonderful birthday, even with the little cancer storm cloud looming in the distance during the festivities. Celebration and sadness can't really ever be fully divorced from one another, and I suppose I am glad for that, even as it feels surreal to go from a night of fun on the roof of Local 16 with my friends to being admitted to the hospital five days later.

I'll be at Georgetown University Hospital from Thursday (10/23) through Sunday (10/26) and would love visitors. Please call my phone (202 213 0258) or my sister's (847 924 9185) if you'd like to stop by. Feel free to email as well - I hope to have wireless.

Thank you all again for the good birthday wishes! And speaking of birthdays...happy birthday Cara, Mari and Nina!

Introduction

2008-10-08T11:01:00.000-05:00

After being in remission for Hodgkin’s Lymphoma for one year, my cancer has returned. On October 23rd, I will begin three rounds of salvage chemotherapy at Georgetown University Hospital before returning home to Chicago for an autologous stem cell transplant.

Unlike my previous round of treatment, during which I was able to function fairly normally and receive out-patient chemotherapy and radiation, this next round requires several hospital stays. Consequently, I have decided to devote some of the forced down-time to maintaining a blog so that family and friends can stay up-to-date on my progress, and so that I have a repository for some of my thoughts on the treatment and healing process.

I have to admit that I hesitated quite a bit on the blog title. My first instinct was to go with a pun on the word “stem” given the double meaning of the term: both because I was to receive a stem-cell transplant, and because I would be leaving Washington DC, where I have lived for over 6 years, to return to Chicago where I grew up (from whence I stemmed, if you will) for the transplant. There were some great ideas. Here's a small sampling:

-Where it all stems from (thank you, mom)
-How do you like stem apples (thank you, Julie)
-High Este(e)m (thank you, anonymous hipster on the 42 bus who overheard my phone conversation with Caren and decided to make a recommendation)

But in the end, besides not being able to come up with anything that met my high standards for wittiness, I decided that maybe the blog title shouldn’t be treatment focused at all. Because while its purpose is, in part, to update folks on how the stem-cell transplant is going, I hope that it will really be about much more than that. While I’m in the hospital, I hope that my focus will be on what I will do when I get out and who I will be when this is over, not the treatment itself. I want to be able to keep my focus on what is worth fighting for. And so I kept coming back to a quote by Friedrich Nietzsche, which I first read as a high school student in Viktor Frankl's 1946 book Man's Search for Meaning: “He who has a why to live, can bear with almost any how.”

Frankl went on to say in his book, that "between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom." I believed, when I first read these words a decade ago, as I do now, that this is the essence of overcoming any hardship, big or small.

So on the virtual pages of this blog, I will report on the stimuli, on my response, on my why and how, and on the journey that I will take in the coming months. Thank you for sharing it with me.