Tuesday, October 18, 2011


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

Sunday, September 25, 2011

Militaristic Language

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.

Friday, September 9, 2011

A Deep Clean

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.

Monday, August 15, 2011

A Future

"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.

Wednesday, August 10, 2011

Holding Two Truths (or, The Audacity of Cope)

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.

Thursday, July 14, 2011

Prednisone: Friend and Foe

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.

Friday, July 1, 2011

Universal Receiver

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.

Thursday, June 16, 2011


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.

Wednesday, June 8, 2011

What's Next

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.

Thursday, June 2, 2011


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.

Monday, May 30, 2011

Counts Coming Up

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
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.

Thursday, May 26, 2011

You Are Here, I Am Here, Here I Am

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
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.