on cancer-free crying

Last night Rhonda and I had a good cry.

It is something that may be a bit hard for someone outside of this experience to understand. After all, my last scans were clear and I don't need to have more scans until December. My blood panel looked great. My oncologist said that I have the bloodwork of a healthy 35-year-old.

But this experience has fundamentally changed us. We no longer live with a sense of certainty of health and longevity. And melanoma is uncooperative and wiley -- we are both terrified to think that it could come back as Stage IV cancer. On days when we are tired, feeling sorry for ourselves, or just a bit "down," these fears dance around in our heads.

[I imagine that some of you are thinking to yourselves that I need a better attitude. A "positive attitude." Barbara Ehrenreich talks about this in her essay "Welcome to Cancerland" and she explains better than I can why the rhetoric of positive attitude has its limits.]

And its not that Rhonda and I are living in daily fear and worry. Our post-treatment life has been rich with activity. We have embraced summer in its multitudinous glory. We have been biking and walking, gardening and cooking, and celebrating with friends. In fact, tomorrow our friends T & T arrive with their 3-year-old daughter. I look forward to every visit as a chance to reconnect with friends, spend time with children, and forget the worries in my head.

Today we will be busy getting ready for guests: washing, cleaning, baking, and cooking. I will feel busy and contented for a good part of the day. And I will likely feel a bit anxious and sad at moments, too. And the reality of living in life after cancer is that all of these things have to co-exist. I have to go on with my life in every way (including returning to work and the attendant stresses) while also balancing a massive sense of unknowing.

There is something profound in having to re-frame your life in a way that fundamentally accepts the tenet that there is only the present moment. The fact that this is always true for all of us -- that there are no guarantees in life -- doesn't necessarily make it easier. My friend B, also a cancer survivor, proclaimed at breakfast one day that she thinks we are forced to live in a higher level of consciousness. I get this idea. And I also get why many cancer survivors talk about cancer as a gift that forced them to completely change their lives for the better.

For me it seems the reality is that life is now more complex. At times it is richer. At times we just need to cry.

in the garden

If you have been reading this blog or getting "health update" emails from me, you know that I initially asked everyone to visualize me well and in the garden. I learned the power of visualization during my friend Emily's journey through cancer, and I quickly took up what wisdom I gleaned from her and applied it to my own experience. I knew immediately that I not only wanted to ask people to pray, meditate, and send healing energy, but I also wanted to ask for a focused vision of myself enjoying the vibrancy of life found in a growing garden.
Garden chicken compliments of Beth B.

Having asked for a large group of people to imagine me in the garden has certainly enhanced and informed the depth of meaning I have found in our garden this spring. We have worked in the garden just about every day. For a while I was heading to the garden first thing every morning as a type of zen practice. Stringing the pea trellis and turning the soil in our beds, became important healing practices for me. And, another lovely result of the request for visualization was that friends and family sent us seeds and offered to help with the garden in many ways. The healing effects of the garden run deep, including the literal nourishment of our bodies. If all goes well the garden will provide us with the majority of our vegetable needs for the year.

Our garden is growing like mad, providing us daily food, and soon to hit that stage of wild growth characterized by mid-summer. The garden and my yoga mat are the two places I feel most certain that I am held up by love, support, and the abundant energy of the universe.

This garden is a collective effort (although the top-gardener award certainly goes to Rhonda).

Here is a quick, early-summer tour:

The salad bed (alternating rows of speckled romaine and arugula). We have been eating a salad a day as well as giving lots away. My mom planted some of the lettuce seeds when she was with us in March







The pea trellis. Hollis helped to make these frames and plant the seeds when she was in town in April. They started flowering yesterday!








The broccoli rabe seeds were sent by Jessica!

The long view which includes (in small hills at the bottom left) the zucchini seeds sent by my cousin Emily.

The Sun and Me

I have been contemplating sunshine a lot these days. It has been gloriously sunny and unseasonably warm in Northeast Wisconsin recently, and I am scheduling my days around the twin imperatives of a) getting into the garden and b) avoiding the harsh mid-day rays. I find myself constantly slathered in SPF 50, donning sun hats and long sleeves (even in 80+ degrees), and running for shade. Early mornings and evenings are my prime time to be outside, and I now relish the sinking of the sun. All in all I feel rather vampire-ish, and although vampires are very cool these days, I am finding it all a bit awkward.

And, I realize that I have always had a complicated relationship to the sun. When I was a kid my parents would have to practically force me to go outside and play. There were no girls my age in my neighborhood, and I really didn't want to play with my brother and his friends because it always led to some kind of aggression or violence (e.g. the time my brother captured and then squished -- one by one -- a bucket of minnows; the time he handcuffed my arm to my best friend's leg and then threw away the key).

And, besides, I wanted to stay inside and read.

And then there was the fact that I just found bright sunshine to be overwhelming. I mean this literally -- the glare of bright, untempered sunshine always compels me to close my eyes and want to retreat. I get hot (and sunburn) very easily, and so I begin to feel suffocated by the sun pretty quickly. But, I also think of the sun, metaphorically, as an overwhelmingly cheerful optimism. As a very young child I associated bright sunshine with Jesus, and I associated Jesus with the church we attended until I was six or seven. This church was a angular, 1960s, post-Vatican II, "modern" church, and was located smack in the middle of a cornfield. The church was very sunny, and it was very hot in the parking lot when returning to the car after mass in, say, July. I always felt overwhelmed and out of place both inside and outside of that church, and those early memories -- linking sunshine and church -- continue to shape some of my feelings about organized religion.

There are all kinds of directions I could head with these associations. However, for this morning I am going to leave the blanks for you to fill in. It is important to say that my relationship to the outdoors has changes significantly over time. We have a lovely yard and garden, and I now wish I could be outside more than I can. For now I find myself looking ahead to a summer of books, shady gardening, and contemplating the divine.

for Raymond

I finally sit down to write.

It has been a month since my last infusion of interferon. The subsequent weeks have hosted some highs and some incredible lows.

I haven't written anything in a long time. I have been unable to write for fear of drowning. But I have regained my strength, and I can begin again.

On April 19th I had another PET scan, and it showed absolutely no sign of cancer. My oncologist literally danced into the room singing "your scans are clear!" There may have even been a high five.

And so it seems I should have been jubilant about this incredible news. From Stage III Melanoma to cancer free in two months. I should have been elated. But the joy didn't come. I waited and waited for days. Instead, in the week immediately after treatment I was more anxious and depressed than I have ever been in my life. I was nearly suicidal. In the incredibly dark space I occupied during those days, life was meaningless and my cancer-free state was only fleeting. I have never felt so alone or so trapped in my own mind as I did in those days.

I can look back at this experience and point to four things that worked together to create the hellish nether-world that consumed me:

1) Because I suddenly stopped taking Lorazempam -- prescribed for my treatment nausea-- I went through what is called "benzo withdrawal." Lorazepam is an anti-anxiety drug that has an off-label use to manage chemo nausea. This introduces us to the irony of fact that, although I was not experiencing high levels of anxiety during treatment, the drug used to control my nausea actually worked to produce high levels of anxiety once it left my system.

2) One of the side effects of interferon is depression. This is a chemical effect, and since the side effects of the treatment are cumulative, and since the drug is still in your system during the week after treatment, it makes sense that I started to feel depressed the week after treatment was over.

3) I went from a diagnosis of Stage III Melanoma to cancer free within two months. The week after treatment I was shell-shocked. I was literally seeing images and events as flashbacks: the moment of diagnosis, being told it was Stage III, calling my parents to tell them the news.

The months of February and March had been lived in survival mode. "Survival mode," in the shape it took for me after the diagnosis, meant that I was able to focus on organizing my medical life, do some work, and even sleep through the night. I felt mostly okay and even hopeful. Sure, I had my moments, but I was working from a place of functional denial that allowed me to keep it together and even find joy in parts of my day. I was in what our friends Emily and Elizabeth call "cancerland," and in cancerland the rules are different. On April 19th I suddenly found myself kicked out of cancerland, and I was lost.

4) Fear of recurrence. Any of you who have done some reading on cancer know that this is a huge issue for survivors. The cancer is gone, but it could come back. This fear can be absolutely paralyzing.

Suddenly these four elements converged and knocked me on the ground. I found myself in the ironic position of being cancer free and incredibly, inconsolably sad. I tried to talk myself out of these feeling through all kinds of rationalizing and comparison. It didn't work. And so I spent an entire week not functioning. I cried and cried; I curled into a ball on the couch; I stared blankly at nothing; I lost my appetite; I couldn't read books because every line was a reminder of human mortality and the pointlessness of life.

A number of things happened to help me through:

• Rhonda. She was so tired, and so ready to be done with being the caretaker, and yet she found herself in charge yet again. She worked hard to strike a balance between taking care of herself and holding on to me. She told me I would be okay. She calmed me down. She distracted me.

• Sound Western medical advice. After the hugely negligent lack of advisement in the first place (someone should have said: whatever you do, do not stop taking Lorazepam cold turkey!) the cancer center stepped in and helped advise me about tapering the medication.
  

• Sound non-Western medical advice. I went to see Dr. Connelly, and she loaded me up on herbal supplements to help "improve my soil." Fish oil, vitamin D, St. John's Wort and Rescue Remedy. These botanicals plus her kindness and reassurance helped me feel sane and normal.

• Talking. A strange thing happened in the week after treatment. People stopped calling me. I think that people wanted to leave me alone and give me time to rest. And I think that many of my friends, who had spent the last two months worrying to death, could finally breath a sigh of relief after the good news. I didn't want to, but Rhonda made me call my friends. She was persistent, and I did. It helped to talk to some of the people who know me best. (And it is still very, very good for this extrovert to hang out with her friends on the phone ;)

• TV. Don't knock the television! It was absolutely necessary and totally therapeutic. One of my psychologist friends explained that it was interrupting neurons and, therefore, interrupting the anxiety.
  

• The garden. It was no accident that, in my earliest cancer correspondences, I asked people to imagine me in the garden. The week after treatment ended I spent hours stringing the pea trellis while listening to an affirmations track on my ipod. I was moving so slowly, and it was cool and damp outside. Yet I remember those hours as some of the first moments of having hope that things would, indeed, eventually get better. In the subsequent month I have spent a lot of time working in our garden. For a while hand tilling each bed was my morning therapy. Then I moved on to sowing seeds and creating paths and designing growing spaces. There was an entire morning dedicated to finding -- and killing -- cutworms. The garden has been an integral part of my recuperation.
  

• Food. I have made some serious changes to my diet in the last month. I am eating a "low glycemic index" diet chosen as my best nutritional approach to preventing recurrence. While I have no grand illusion that food -- only food -- can prevent or cause cancer, I do know that there is a vastly important psychological and physical benefit to eating in ways that I feel are sustaining and healthy. I have become a crazy-veggie-eating woman, and I feel pretty good about that.

• Exercise. I now exercise every day. I have had a couple of "days off" here and there, but I found that regular, daily exercise was one of the best and fastest ways to get out of the dark place. Dr. Connelly confirmed that there is a study that shows exercise can be more effective than Prozac at altering your mood.
  

But why am I telling you all of this? Why now?

Well, tonight I went to UW-Marinette's graduation ceremony. I had the perfect excuse not to go to graduation -- who could blame me? But I like to go to graduation, and it is important for me to see my students. I have been laying incredibly low in my work life, and so I was somewhat unaware of who was even graduating tonight. But I went.

As I sat on stage with the faculty and staff I was thrilled to see one of my favorite students, Ray, among the graduates. Ray is a non-traditional student who took English 102 with me in the fall. I so enjoyed the intelligence and honesty found in (written and spoken) conversations with Ray during our semester working together. He began to come to office hours during the semester, and we would talk about writing, reading, and eventually broader life issues. He is one of those students who most inspire me; he has overcome a lot of crap, and his road to becoming a college student was windy. But as a college student he was brilliant, hard-working, and focused. And, by the end of the semester I had the clear sense that Raymond was one of the kindest people I had ever met.

Ray sent a friendly email early in spring semester just to say hello. I quickly told him about my diagnosis, and he wrote back immediately with compassion and concern. We wrote back and forth, and we made a tentative plan to meet for tea. I sent him the link to my blog and he read it. And all through my treatment, Ray kept writing. He told me stories, he sent pictures of his family, and he shared cancer-related articles and resources. I stopped writing back once treatment started -- I was officially on medical leave, and I didn't check my email at all. And, yet, Ray kept writing.

I found these emails from Ray two weeks ago when I started back to work part-time. I was so overwhelmed and still quite depressed. I could barely type a short email to colleagues let alone write anything that came near explaining the truth of things. I wanted to reply to Ray, but it would have to wait until I felt better.

And I have been feeling better. The combination of all of the good resources and self-care tactics above have worked well. I haven't had a really low day (or even hour) in two weeks. I am no longer taking any prescription medications. I can sleep through the night on my own. And most importantly, I once again have hope. I hope that I have beaten cancer for good. I hope that I will live to be old. I hope that I will have many more years living this life that I have. I still feel scared and worried, but those feeling no longer consume me. Some days I even feel lucky and brave.

And so it was a total surprise to me tonight, as the graduates strolled out of the auditorium to be greeted by faculty and staff, that I began to cry.

I should say here that I have been long expecting to unexpectedly cry in public. I thought it might happen when I arrived in New York for my second opinion and saw my closest friends for the first time since diagnosis. I thought it might happen when my mom arrived from PA to help during my first week of treatment. It could have happened with the "cancer free" proclamation.

But it makes perfect sense that it happened during the graduation recessional. As students began to walk through receiving line of faculty, one student after another abandoned the propriety of handshakes and nods to come over to give me a hug. And I started to cry.

And it was in talking to Ray, after receiving a big, warm hug, and seeing the concern in his eyes, that I realized how intertwined we are in this world. He explained that he hadn't heard from me, and he was worried... Is everything okay?

Of course, how could he know or understand the million miles of my journey in the last weeks? How could I explain that I was declared cancer-free and then sank into the biggest depression of my life? How can I explain that I am going to live, and it has been so, so hard?

In her keynote speech delivered this evening, my good friend and emeritus professor Katherine Holman reminded her listeners of the relationship between respect and wisdom. I cannot speak as eloquently as she did about this subject, but I can say that tonight I found a deep mutual respect at the core of my life as teacher. My students have helped me to become wiser, and I am profoundly grateful.

These Days

It's not that I don't have time to write. I do.

I just haven't been sure what I should be writing about these days.

I have been visiting with friends, napping more than usual, and reading a ridiculous amount of People Magazine. (I know now a lot about both the Tiger/Elin Woods and Kate/John Gosselin -- it's like crack.)

Monday through Friday my days are structured around getting to my afternoon infusions. Mornings are slow, and sometimes it is about all I can manage to wake up at 9:30, eat breakfast, shower (with the cow glove), pack up my stuff and get into the car by 12:15. This schedule is dictated by the fact that I AM MOVING SLOWLY . Nothing like a heavy course of chemotherapy drugs to age you 15-30 years.

Once we arrive at Bellin, we check in at the front desk and wait a few minutes. Shortly, a nurse comes and takes me back to the infusion room -- a large, airy, social space run by a troop of smart and speedy oncology nurses. There is a lot of good nature and laughter in that room, and they always ask me, with eye contact and a substantive pause, "how're you doing today, Amy?"

And the answer to that question has been "nauseous." I have had a low level of nausea for the past two weeks, and it has been kicking my butt. They doctors and nurses tried all kinds of combinations, but we finally landed on the winner this Thursday: Zofram +Lorazepam = NO MORE NAUSEA! For the past three days I have been happily (if suspiciously) free of nausea and I am a little unsure of what to do with myself.

This weekend we planted our peas, seeded the tomatoes, and cooked brunch with friends. Tomorrow I begin the last week of this that has become my routine.

day one

As is likely to happen in my life as a medical subject, I received a 7am call this morning from the hospital. The apologetic woman on the other line said that she was very sorry for calling so early, but they need to push back my picc line appointment by an hour. Rhonda and I were already up and dressed, ready for our early departure. I decided to use the extra time to write and drink my coffee. (Buddy and Rhonda went back to bed as Rhonda snuggled into the flannel sheet, holding on to the dog, she explained "I LOVE going back to bed, Buddy.")

All in all, I feel very prepared for today. I am ready. I have tied up most loose ends with work, we have worked tirelessly to get the house ready, cook and freeze food, and schedule our month. We have people flying in to help us, we have a troop of locals cooks bringing meals, and we have warm clean beds awaiting us in the homes of our Green Bay friends.

I have also taken lots of time to sit with this experience emotionally and spiritually. Yoga, therapy, meditation, plus walks in the woods have all allowed me the space to begin to process. One of the trickiest but most pervasive pieces of well-intended advice I have received in the recent weeks is think positive! For many, this is intended to inspire confidence in my ability to survive cancer. However, it also works to encourage masking the difficult emotional realities that come with a cancer diagnosis. I have had to learn to put aside these admonishments to just and only think positive thoughts and allow myself the space to be scared, worried, and uncertain. Making room for all of the feelings that come out of my experience of cancer allows me to be brave and strong and, ultimately, very ready to heal.

So, as I sit here sipping the last of my morning coffee, watching the sun come up over the trees, I feel that I have done a lot of good work to prepare for this moment. I am well nourished in many ways, and I am ready.

Frequently Asked Questions

Rhonda and I have been as busy as little squirrels preparing for winter, except that our preparations are of food, plans, and favors. We have been working hard in getting reading for the coming weeks of treatment and trying to squeeze in some time outside (where it has been sunny and in the 50s). This means that I have been slow to write. However, I want to take the time to answer a couple of frequently asked questions.

Q: What led you to have your mole removed? Or, how did you end up finding out you had melanoma?

I had a big mole on my left ear lobe. It had been around as long as I can remember (although my mom swears I didn't go to college with it!) I had had several dermatologists look at it over the years, and they all said that it was benign. One Dr. even went so far as to explain that it is a "hair producing mole" and they are never cancerous. I was discouraged from having it removed by these early consults -- one doctor told me that having the mole removed would be "purely cosmetic" and that it would leave a scar more noticeable than the mole itself.

Anyway, the mole had grown some and had become painful within the last year. I mentioned it to my family doc who referred me to a plastic surgeon who could biopsy it. I almost didn't follow through with the appointment (because of above previous experiences), but go to see Dr. Lee who did not hesitate and removed the mole on January 12th.


Q: Do you feel sick or tired?

No. I really don't. This is pretty typical of melanoma -- you only start to feel sick once the cancer is pretty advanced. I feel very normal. I have been able to exercise daily, do yoga, and continue with everything I would normally do.

Q: What will your treatment be like?

I will be receiving 30 minute infusions of interferon five days a week for a month. I will have a picc line put in the morning of my first treatment (this Monday, 3/22) and then all of my infusions will be delivered through that line. I will be at the center for 1-2 hours a day.

Side effects of the interferon are "flu like symptoms" and fatigue. The side effects are cumulative, so I will likely feel more tired by the end of each week and by the end of the month.

Q: Will you drive back and forth to Green Bay every day?

No. The schedule (at least for now) is that we will drive home on Monday and Tuesday afternoons, and then we will stay with friends on Wednesdays and Thursdays.

[For those of you who don't know your Northeastern Wisconsin Geography, Marinette is about 60 miles from Green Bay. However, now that the new highway is open, it can take just 50 minutes!]

Q: Are you working this semester?

I am not teaching this semester. I received the initial diagnosis on the first day of the semester, and by Thursday I was told by my oncologist that I could not work this semester. (My colleagues and the dean worked amazingly quickly to get coverage for my courses.) I have been able to do some "meaningful work" for the university, and this has allowed me to work between 10-20 hours a week for the last six weeks. I will be on complete leave during treatment.

lucky

When Rhonda and I bought our house three years ago, we were convinced to do so because of the woods. The house is fine (we've made it more our own), but the seven acres of land -- including six acres of woods -- was the true selling point.

I cannot overstate how much joy and contentment we get from walking in the woods. We have a small loop of a trail, and if you go around twice, it takes about 20 minutes. It has been a tremendous resource in the recent weeks. Buddy loves the smells and dreams of tracking deer and rabbits unleashed. Rhonda sometimes goes to the woods for some good alone time. And I enjoy both solitary walks and walking with Rhonda's company.

Today as I walked in the woods it was clear that spring is coming. There were snow-free patches of mossy growth, warmth in the air, and signs of general activity. But it was the light, drifting down from the the sky 30-feet above, that really made me feel that all is well.

Treatment Update

Dear friends and family,

In the last two weeks I have continued to recover well from surgery; my ear looks better than anticipated, and I have even been told by some that I can not get away with any of the multiple ear lobe stories suggested by friends (shark bite, Mike Tyson, and Van Gogh being the most popular). Rhonda and I have been to New York and back, and we have even planted our first seeds indoors (parsley, in case you are wondering).

After the meeting with the Sloan-Kettering melanoma specialist and a consultation with my local oncologist, we have decided that I will do four weeks of interferon treatment to help my immune system fight off any remaining cancer cells and prevent recurrence. I will receive treatment five days a week from March 22nd through April 16th at the Bellin Cancer Center in Green Bay. I will not, however, do the additional 11 months of treatment as both doctors agreed that the most benefit comes within the first month.

I have been very impressed with both the facility and the comprehensive onsite services at Bellin. The treatment area – where I will spend two hours a day – is a beautiful sunlit space that overlooks a garden. And, because of the potential side effects of interferon, we are pleased to know that there is a nutritionist, psychologist, and a doctor who specialized in integrative holistic medicine on staff.

After treatment I will be on a rigorous program of observation with oncology/dermatology appointments four times a year for several years. While the post-treatment period will bring relief in many ways, we both recognize that there will be significant challenge in living with the uncertainty of recurrence. In the past weeks we have stepped up our self-care game, and the many forms this takes for us (cooking healthy, whole foods; walks in our woods; yoga and volleyball; meditation; the company of friends and family, etc.) will sustain us in the coming years.

I continue to be very grateful for all of the ways we have both been supported in the recent weeks. And, although I haven’t been able to respond to all, I very much appreciate the messages and well wishes.

As the very first seeds of the garden begin to germinate, I ask you to continue to envision wellness blooming.

With hope,

Amy

Strange Dreams

Last night I dreamed that I was in a public "shooting" gallery, except that what was being shot were streams of radiation, and the targets were all women (including America Fererra and four of her lookalikes!?). The guns shot frightening ray-gun like stream of radiation towards your body while people watched in what felt like the equivalent of an ice rink the middle of a mall. The victims/patients had to show up in nothing but their winter coats and then walk out in front of the shooters. It was my turn and I was being coaxed to walk into the shooting area, naked, in public, and subject myself to shooting rays of radiation. All while being told "it's not that bad!' and "it will help you get better!".

As I originally described this dream in an email to my friend Tamiko, it occurred to me that the dream could also be interpreted as a metaphor for academia (PhD exams, defense, and tenure, anyone?).

Huh.

the Queer QuiverFull

A few minutes ago I was waxing romantic about the future. I was thinking about all of our friends and their children, and I made a broad claim that there is a revolution within the coming generation. My argument was that there are so many more queer, multi-racial, non-nuclear families and these families are changing our culture in really exciting ways.

Rhonda interrupted my utopian fantasy by saying: "Except that the super-conservative Christians are reproducing at four time the rate. You know, the whole QuiverFull thing..."

Oh, right. How could I forget? That's kind of their whole point -- to ensure the future.

This put a momentary pause on my optimism. My response? There needs to be a Queer QuiverFull movement, ASAP.

The story of my ear

Hello! This is my first attempt at doing any writing post-surgery. Please ignore all poorly crafted sentences.

Thursday's surgeries went well, meaning the end results were exactly what we hoped. However, it would be totally Pollyanna of me to suggest it was fun or in anyway pleasant. In fact, *gasp* there were some particularly unpleasant moments during the day. The worst of which was the injection of more nuclear medicines into my earlobe. I received four shots around the tumor site; the initial prick was just that. However, the subsequent injection was horribly painful. I can only describe it as feeling like hot barbed wire being threaded into my ear.

There is a particular irony to this being the most painful of my experiences thus far. You see, we have been noting that in my entire team of surgeons, oncologists, and second opinion givers (Sloan Kettering) there has not been a single white male among them. This has seemed remarkable, and we have been amused. And, this is not something we had any conscious effort in establishing. It just happened that we have a series of white women and Asian-American men going to bat for me. (We do have a theory about medical networks and old boys clubs...) However, let it be noted that the radiologist who injected me with evil barbs of pain was a white man. I know, I know, I can already hear Rush Limbaugh making claims of reversed racism and sexism. However, it does seem that, based on my one experience of a white male doctor, they inflict pain and generally cannot be trusted. (Ha! Telling the story this way makes me laugh an awful lot. My apologies to all of the "good" white men out there, including several white male doctor-friends ;)

I don't really have lot more to say right now. The drugs and discomfort make it so that typing is somewhat awkward. However, I would like to share the list so far of all of the creative stories, invented by friends and family, that might explain where my left earlobe has gone:

1) A fight with Mike Tyson (a least 5 people suggested this)
2) Van Gogh (multiple nominations)
3) Aliens took it so that they could clone enough Amys to populate their galaxy
4) "Why I no longer have a parrot!"
5) SHARK ATTACK!

Other great comments that do not work as stories include "Earlobes are overrated" and "I think Amy will look hot without an earlobe. Hell, I think I would look hot without an earlobe too!"

Health Update, 2/9/10

Dear friends and family,

As promised, I am writing with an update. The past (almost) two weeks have involved a lot of doctors’ appointments and phone consultations, and even more waiting. We have been buoyed by all of the love and prayers, food, cards, gifts, and general well wishes. While I have not been able to respond to every note, please know that I appreciate hearing from folks, and the messages mean a lot. Thank you.

So, now the details… I will have outpatient surgery this Thursday – there will be two surgeries performed over the course of the day. The first is called a sentinel node biopsy, and it is essentially the mapping and then removal of lymph nodes. Until the initial mapping is done (using more nuclear medicine – woo hoo!) we will not know how many lymph nodes need to be removed. The area of focus is the left side of my neck, under the tumor site. After that diagnostic and biopsy is performed, I will then have a wide excision of my tumor site. This is going to involve the removal of my lower left ear lobe. Dr. Lee, the plastic surgeon, will initially do a skin graft, and we will do reconstruction once I have begun to heal.

As I mentioned, this is outpatient surgery. We will check in at 5:30am, and we should be home by 5pm or so. (And many thanks to the various friends who have volunteered to watch Buddy, house us in GB the night before, and keep Rhonda company in the hospital all day!)

The other update is that I am currently scheduled for a second opinion at Memorial Sloan-Kettering in New York City on March 2nd. While we were initially exploring Midwestern options, it was actually my insurance company that encouraged me to seek out a second opinion at MSK – one of the top-two melanoma clinics in the country. Although I feel as though I might jinx myself by saying this, we were very surprised to learn that my insurance will be paying for airfare and a hotel, as well as the cost of the consultation. While we initially thought that the second opinion should come before surgery, we soon learned that they require the pathology from the sentinel node biopsy.

We are still gathering information, and the ultimate treatment plan is still to be determined. The pathology reports from Thursday’s surgery will be important to a clear understanding of where the cancer has spread in my body. The more long-term (and still very tentative) plan is that I may have to have an additional surgery in later March, followed by the beginning of treatment once I have adequately healed. Although this might change after the second opinion, the standard course of treatment for melanoma is interferon, not chemotherapy.

I would like to ask for continued prayers, visualizations, or whatever form of positive energy works for you. In addition to imagining me well (and in the garden), I would like to ask you to please keep Rhonda and I, as well as and my surgeons – Dr. Cindy Geocaris and Dr. James Lee – in your thoughts on Thursday. Finally, as one goal of Thursday’s procedure is to get more details on how far the cancer has spread, feel free to imagine that it hasn’t spread very far at all! In addition, we hope for a clear margin around the tumor – in other words, imagine that Dr. Lee gets all of the cancerous tissue.

With hope,

Amy

Thirty-Five Years

Today is my 35th birthday. A few weeks ago, if you had asked me, I would had said I was not looking forward to it. I don't feel that way any more. This birthday is still bittersweet, but I know that all coming birthdays will be met with the enthusiasm of a woman who has accomplished something.

I now shake my head in disbelief when anyone seems to be ashamed of their age. This seems to be a particular habit among women, and I was reminded of this the other day when watching Mary Tyler Moore. In this episode Phyllis, Mary's dramatic downstairs neighbor, announced that she and Mary will enact some female bonding by "revealing our true age!"Mary rolls her eyes and says "I'm 34" with utter lack of interest, but Phyllis hems and haws and eventually utters in a quietly dramatic voice "I am 43 years old."

Forgive me if I no longer have patience for someone who is ashamed of how long they have lived!

In order to commemorate this day, I have been working on a small list of things I have learned this year:

1. My arms are double jointed
2. Our garden can be abundant and successful (even in a bad year!)
3. Ground cherries make wonderful jams and pies
4. I miss Seattle, but I am starting to think of Marinette as home
5. My dog is even more neurotic than I originally believed
6. I am a good teacher
7. I can knit more than just hats and scarves (hello Soctopus!)
8. Pine trees look larger in the woods than in the living room
9. Midwesterners are kind, in general
10. I am stronger than I ever imagined

Amazing Hazel

The week that I learned of my diagnosis was the hardest week of my life. The news shot through me like a cannonball and left me gasping for air. There were infinite dark corners where my mind would dwell, and it was hard to think about anything else.

And then there was Hazel.

Our friends Marijke and Danae were on a medical mission in Haiti this summer and they fell hopelessly in love with a baby girl who was so malnourished that, despite being 10 months old, she was the size of a newborn. Marijke spent the week holding the baby, and soon thereafter there were adoption papers in the works.

Fast forward to last Thursday -- the day I had my first two "cancer appointments" scheduled in Green Bay. There was a big gap between appointments and we decided to see if Marijke and/or Danae would be around. I checked Marjike's Facebook status. It read:

made it to santo domingo, hitched a ride through the night to the dominican and haitian border, and made it to the orphanage safely with yet another ride today. Good to be here, we will try to get the children out on monday.

Prior to this, the last news I had heard from Marijke was that the baby was okay and the orphanage had remained relatively unscathed. I was completely surprised to learn that she had already returned to Haiti. I imagine it as a "fierce-mama pride" that compelled Marijke to get on a plane and find the baby.

And find the baby she did.

We ended up spending an hour or so with Danae after my oncology appointment. We needed a place to decompress and gather ourselves before driving back to Marinette. Danae graciously fed us and lent a doctorly ear despite the fact that it was also one of the hardest weeks of her life as well. Marijke and Hazel updates were interwoven with the cancer conversation; Danae intermittently took phone calls from our senator's office. The report was that Marijke and Hazel were sleeping in the US Embassy. The baby was sick, but doing okay. It occurs to me now that we were all in a holding pattern, waiting for something to happen.

Just over a week ago Danae flew to Miami to meet Marijke and Hazel as they arrived from Haiti. They spend a day in processing, and then flew back to Green Bay.

I have been telling friends and family this story all week long. I joke that it is my cancer counter-narrative, and this is not so much a joke as an assertion. The story of love and hope has alternately made me giddy, teary, and filled with joy. It has been a welcome reminder that life is happening (and at what a pace!) all around me.

On Sunday we had the chance to meet Hazel. She is a calm and beautiful child; she melted my heart.

About Food

Being who I am, it makes sense that one of the ways I am preparing to tackle cancer is though food. My friend Tirza just sent me a wonderful cookbook -- The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery. The author, Rebecca Katz, takes a whole-foods approach that fundamentally resonates with my values around food.
Of course I have no plans to simply subscribe entirely to one food philosophy. However, based on a composite of information (including friends experiences, meeting with a nutritionist, etc.) I do plan to make some dietary shifts to both boost my immune system and manage the eventual side effects of treatment. Likely this will be fewer carbs and sugars and (believe it or not) more meat -- especially broths.

The new list on the right bar of this page is a place where I will simply list recent meals. I like the idea of sharing the creative and delicious things we are concocting as well as keeping a record for myself.

" I think cancer is going to kill our dog!'

The above sentence was uttered by Rhonda 10 minutes ago.
Already mischievous by nature, Buddy has been dabbling in some especially dangerous behaviors these days. Today he attempted to eat an organic dark chocolate bar, two days ago he got into the ambien. He won't eat his food in the kitchen anymore, but instead scrambles away with it as though we are trying to steal his kibble. He is feeling our stress deeply, and we are having a hell of a time keeping up with him.

As one friend wrote, "Poor, neurotic Buddy!"

On PET scans and nuclear sugars

One of the first things I want to tell you about is the bizarre experience of having a PET scan. The PET scan -- or, Positron Emission Technology --was explained to me in this rather simple way: "cancer cells consume glucose much more rapidly than normal cells. We inject you with nuclear sugars, wait an hour for the sugars to be absorbed, and then do a full body scan to look for 'hot spots.' " It is a standard technology for understanding how far/if the cancer has spread.

A quick note about radioactivity: I grew up less than 30 miles from Three Mile Island, and in 1979 when the almost-meltdown happened, my family drove to Long Island for about a week. I remember being scared and confused, and the word "nuclear" was frequently uttered. I was twelve when Chernnobyl happened, and recall the horrors of multi-headed goats and other agrarian deformities reported in the pages of Time magazine in the following years. I am also a fan of The Simpsons, and cannot think of radioactivity with imagining the opening sequence in which Homer obliviously releases radioactive material into Springfield. All of this is to say that I am a child of the nuclear age, and in my normal, pre-cancer world, could not have imagined willingly putting myself anywhere near radioactive materials, let alone putting them into my body.

So, last Thursday at 10am I showed up to the Bellin Cancer Center for my very first appointment: the PET (which, a friend teasingly explained to her children, meant they would be scanning Buddy). The kind but rather brusque technician came to retrieve me from the calm environs of the lobby. She did a quick overview of what was going to happen as we walked down the hall to the staging room, a tiny little room (perhaps 5x5 feet) with only a small stand and a recliner. She then began to explain that, although the building was generally very very nice, the PET rooms were poorly designed and "all us technicians are pretty mad about it." No shit!, I thought as I attempted to sooth the slightly claustrophobic tendencies beginning to encroach.

She then explained that the first step was to test my blood sugar "If you are over 180, we can't do the scan today." And another small round of panic surged as I thought about the big chocolate chip cookies and blackberry pie consumed the night before as a group of friends converged on our house for a small distract-the-girls-from-cancer party. Why didn't anyone tell me this ahead of time? I had known to fast after midnight, but no one mentioned a thing about blood sugars. "Okay" I muttered "but, uh, I ate a lot of sugar last night." The technician looked at me with vague disapproval and pity , issued a slight tisk-tisk and in her best Wisconsin accent said "Oh! You did some carb-overloading last night, did ya?"

We quickly got past the sugar scolding as my blood levels were fine. We moved on to the most important -- and strange -- part of this story: the injection of nuclear sugars. The technician left the room to obtain the sugars (they have a half life of 13 minutes, so everything must be ready to go) and returned with a nifty-looking little lead box. It really looked like a Japanese-design modernist lunchbox with cute handle and all. Shen then took out a vial which was also wrapped in a lead jacket, and then quickly shot me up with the sugars.

She the left the room, returned with warm blankets, propped my legs up and said in a most perfunctory way: "Okay. I'll be back in an hour. You are not allowed to have any stimulation at all, so no reading or music or anything." What!? Did you just tell me I am not allowed to have any brain stimulation? Of course, being who I am, my immediate response is to have a rapid-fire inner-dialogue about the sheer impossibility of this request. Are you telling me not to think? Really? 'Cause you just shot me up with radioactivity and enclosed me in a room smaller than my bathroom. Never mind the fact that she had just conveyed this request to a slightly neurotic academic trained by a vast army of theoretical geeks to always think, always analyze. I'm pretty sure not thinking is not possible. But, whatever.

The results of the PET are discussed elsewhere, and the actual process of being scanned was far less exciting than the setup. I essentially laid on a gurney while being shuttled through an enormous CT donut. It felt kind of reminiscent of going through a car wash, minus the water, of course.

As I retell this story, I can't help but think of Mary Poppins who cheerfully assured her wards that "a spoonful of sugar helps the medicine go down." And this, my friends, was my introduction to Cancerland.

Time to begin again

The blog has (obviously) been defunct for a while. It was a natural result of the end of a transition -- after a year in Marinette, the move from life in Seattle was no longer at the fore-front, and I found that the work of my academic and home/garden lives took up almost all of my time. It had served its creative and communicative function and I was okay with letting it languish.

In the last month -- even before the cancer diagnosis -- I had been playing with the idea of reviving the blog. I started an entry and then deleted it. I though about my theme and purpose -- as a professor who teaches lots of writing, I am worried about such things as coherence, purpose, sense of genuine engagement, etc.

Well, for better or for worse, the surprising news of melanoma -- and the attendant experiences -- has given me a very good reason to dust off the once-beloved blog. Obviously the theme has changed (although the url and title will remain the same for simplicity's sake). I toyed with the idea of renaming it something darkly humorous such as "adventures in cancerland" but realize that the joke might be lost on some. However, I do forwarn that this blog will be the site of my own creative/intellectual/emotional process. Yes, it might make people squirm. And it might be too much for others. I absolutely recognize this, and encourage you to take care of yourselves. However, having only spent 10 days as someone with cancer, I already know that I need to let go of taking care of others.

And, I hope that this will not become strictly a cancer blog. It is an Amy-blog, and one of the (big) factors of my life right now is cancer, treatment, philosophical meditations, etc. However, I fully anticipate that I will also be writing about all the other things that make my life rich such as my relationship with Rhonda, life in Marinette, food and cooking, knitting, Buddy, books, movies, friends and family, yoga, and many other random things.

I am keenly aware of how important humor and good stories are and will continue to be for me. I plan to use this as a site to tell lots and lots of stories.

An Open Letter: Amy's Health

Dear friends,

As some of you already know, this Monday, 1/25, I was diagnosed with melanoma. This week has been one of utter shock and painful waiting. Yesterday we spent the day in Green Bay, with a PET scan in the morning (in which I was injected with radioactive sugars!) and then a follow-up appointment with my new oncologist.

We felt immediately comfortable at the Bellen Cancer Center – the staff and doctor’s are incredibly kind and warm. My oncologist – Dr. Kelly Lynch – is just a little older than us, and she comes highly recommended by my other doctors as well as a doc/friend of ours. (And, she was wearing super-cool, bright-red patent leather shoes, which confirmed her as trustable in our eyes ;)

After reviewing my scans and the bloodwork, Dr. Lynch shared that “there is good news and bad news.” The good news (very, very good news in our eyes) is that the cancer has not metastasized in any of my vital organs. The less-good news is that the cancer has spread to the lymph nodes on the left side of my neck. The oncologist described this as “locally advanced and curable.” The official diagnosis is “Stage 3 Melanoma” which, we recognize, sounds awfully frightening to many. However, after days of contemplating the worst-case scenario, this seems like truly good news; Rhonda and I were so relieved and even happy -- I have a real opportunity to get better. As Dr. Lynch put it: “this IS treatable!”

The treatment is going to be rigorous (or, as Dr. Lynch said “a full-court press.”) I am going to be having surgery to remove the remaining perimeter around the tumor site (my left ear) and they will also take out lymph nodes. Although the plan is still in the works, it is likely that I will begin interferon treatment a month after the surgery. This will be a month of daily treatment followed by 11-months of 3x week treatments. Before all of this happens, I am planning on seeking a second opinion at the Mayo Clinic or another regional clinic with melanoma specialization. Needless to say, I have to take a medical leave from the university for this semester.

So, as we are taking a huge deep breath of relief, we are also beginning to prepare for the long road ahead. We are incredibly thankful for all of the love and support of our local community, my colleagues, our family, and many far-flung friends. The calls and thoughts and prayers are so sustaining and encouraging. We are feeling especially grateful for each other right now, and we feel ready to fight this together. While I recognize the range of emotions that come with this news, I ask that you spend much of your energy imagining me well. As the mid-winter doldrums have hit hard this year, I especially like to imagine myself in the garden, surrounded by the vibrancy of life.


With hope,


Amy