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