Living Well – Ongoing Adventures in Uncertainty

I will be starting chemotherapy on Feb 8th. We set the wheels of the treatment juggernaut in motion at my oncology appointment a few days ago. I’ve already had a baseline echocardiogram; an ultrasound of the heart.  I saw my heart in shadows on the screen and watched the busy valves opening and closing. How I wish my organs could continue to do their vital work unobserved and without harassment from the powerful drugs ifosfamide and epirubicin that I will be taking for one to six months.  Each round will involve a five day hospital stay followed by three weeks of recovery. We will evaluate how I am tolerating the therapy after each round and decide to continue or not. There will be no way to measure the benefit of the treatment. If the cancer doesn’t return we will know that it was successful or unnessesary.

It’s taken me a long time to settle into this decision and I haven’t been ready to write about it until now. I don’t know if this decision is right or wrong; I do know it is one I can live with. I have been feeling so well that it is difficult to voluntarily return to the land of illness.  Losing my hair during treatment will be no small thing.  So far, in my journey with cancer I have always been able to ‘pass’  Soon, I will be set apart in a visible way.  UCSF is testing a chemo cooling cap  to prevent hair loss in breast cancer patients. I don’t think I could stand having my scalp chilled to 41 degrees for the five days that my treatment will take, but if it could also prevent chemo brain I would consider it.

I’ve had a month long vacation from scans, pathology reports and doctors – sweet, but too short. I had an MRI on Monday  and I’ll see the oncologist next week to hear results and his recommendations about chemotherapy.  It has been great to feel myself regaining energy and independence. I still have a ways to go, my stamina is limited and I need a lot more rest and recovery time, but being able to easily enjoy eating, walking, driving myself to the grocery store and going out with friends is a big pleasure. It feels like the most healing thing I can do is nourish myself and I have been having fun cooking. Nothing fancy, just experimenting with comfort foods;  new soups, different ways to roast a chicken, making a really good cornbread and browsing through cookbooks to see what appeals to me. My idea of a good time is visiting the organic herb and  spice aisle at Rainbow grocery, opening the bulk jars, inhaling the fragrance of cardamon pods and noticing the texture of rubbed sage as I scoop small amounts into wax paper envelopes to bring back to my kitchen. Maybe I’ll carry a pinch of sage in my pocket, when I visit the disinfected exam room of the oncologist, to remind me that the eastern slopes of the Sierra Nevada exist in parallel time with his office and my kitchen.

I’m a slow cook. I need to triple the preparation time listed on a given recipe to come close to how long I need to make it. During my convalescence I’ve come to realize how often I measure myself against standards that don’t suit me. I don’t think I’m alone in this. My convalescence has given me a chance to indulge my inner tortoise without guilt. I am savoring my slowness. I hope I can continue to honor it when I no longer have a ‘good excuse’ for it.

I am afraid of what lies ahead, even if my scan results are clear, as I expect. Either, I will embark on chemotherapy treatment and cope with more illness, loss of hair, and the possibility of doing more harm than good in the hopes of an uncertain cure, or I will gamble that surgery and radiation have done enough, choose no further treatment, and begin a shaky re-entry into the bustling, productive world where I am neither well nor unwell, inhabiting some shifting place in between, knowing full well how unknown the future is.

I’m emerging from post-radiation sludge one week after my second series of treatments. The after affects of radiation, tapering off narcotic pain medication, and post-treatment letdown came together in a noxious brew that my body is struggling to clean up.  It is easy for me to be optimistic when I feeling well and impossible when I feel like crap.

I just re-read my last entry and saw that it ended with a cliff hanger.  I was sent to the hospital right after I had the MRI because the radiologists thought they saw signs of infection where the balloons had been removed. Turns out it was a scary false alarm.  I had a bunch of tests run and had to spend the night in a too familiar hospital room having my vital signs monitored. Everything was within normal range and they let me go home. This experience was an unnecessary reminder of how quickly life can change.  The next day I enjoyed attending a reunion with my former co-workers from the Apple Library, relieved that my Halloween costume would not be a hospital gown.

My five sessions of electron beam radiation began a few days later in a storage room in the basement of an old teaching hospital. I’ve come to think of it as a journey to an underworld. My trip began waiting at the elevator bank. When the white up arrow lit above an open door, many crowded in. When the red down arrow glowed, my companion and I were often the only ones to enter.  Once down, there were two long hallways, one lined with unused hospital beds, and the other empty. Both led eventually to the waiting room for radiation oncology but but I often found myself disoriented especially on the way out.

My radiation technician was gentle and calm, he told me I was the only patient scheduled for the electron radiation machine. He ushered me into a cement floored room that looked like it was rarely used. There was a narrow bench where I was to lie face down with my hands clasped above my head. Luckily, the treatments themselves lasted only 45
seconds. This was shallow mop-up radiation designed to kill off and sarcoma cells that may have been lurking in the drainage or incision sites.

The machine itself looked like it was manufactured in the 60’s; a big, round, camera-like thing stationed above the bench.  Along the walls of the room was a hodge-podge of stuff: lenses of various sizes scattered on a table with a handwritten note that read ‘clean area’
and a magazine picture of Einstein on a bicycle pinned to the wall above it, some sort of wagon stuffed with what looked like children’s Halloween costumes, a tall metal framed cart with white cloth straps suspended down the middle ghost-like.  After my second-to-last radiation treatment I asked the technician about the cart.

“Oh, that was used for people who were receiving full-body radiation treatment.  The patient would stand on the platform and hold onto the handles on either side, and the harness was strapped on to keep them from falling if they fainted during treatment. We don’t use it anymore, with the newer machines people are able to lie down.”

I didn’t ask him what diseases they treat with whole body radiation. It sounds like a procedure that should be reserved for one of the lower circles of hell.

The kindness of the technicians and the picture of Einstein got me though the second round OK. It also helped to get a spontaneous hug from my radiation oncologist when I saw him.  The aftermath of treatment was a visit to a different sort of underworld, one where I lay low and all the skeletons in my closets came to visit me.

I’m so relieved to be starting to feel better. A fine friend came over and cooked some chicken soup for me last night. Today, I’m looking at cookbooks and noticing that food smells good again. I don’t have to visit the oncologist and talk about further treatment decisions until mid-December. Right now, I don’t want to see any doctors ever again.
I’ve been reading a book of essays by Barry Lopez, ‘Crossing Open Ground’. He writes wonderfully about humans and wilderness. I imagine I’m with him watching white geese at Tule Lake or on a river trip through the Grand Canyon. I look forward to future hikes along my favorite trails at Pt. Reyes. For now, I think I’ll have another bowl of soup.

Monday 10/24

I’m writing to you from the blahs of radiation land. I started Cyberknife treatment last Wednesday and it is so weird. Now I know what a Cyberknife machine looks like and how it moves. It is a smooth high tech beastie, sort of a cross between a tyrannosaurus and the Pixar animated desk lamp. It is articulated with several ball joints and moves almost continually throughout the 45 minute treatment session in it’s pre-programmed choreography. It seems to me both intelligent and blind. I’ve heard that other patients have named it but I have been unable to form a relationship with it. It is too alien and incomprehensible to me. For the past four treatments I have been lying on a table looking up at a blue circle with pinpoint lights that simulate constellations during the summer Solstice. I had trouble loading music onto the iPod shuffle I borrowed so I’ve ended up listening to a mix that includes ‘Fly me to the Moon’ by Frank Sinatra and other standards, some meditation music, and a recording of a lecture by Zadie Smith on mixed origins and the positive uses of equivocation that she gave during Obama’s presidential campaign. I don’t know how to get out of shuffle mode which has made for some odd shifts. I tried turning it off and closing my eyes to meditate but the whirring noise of the machine as it moved around made it too hard to resist peeking to see what it was up to. I don’t trust it. I wish I could and I know the doctors have done everything they know to prevent serious side effects. These potential side effects wouldn’t show up for a while and once the radiation is administered nothing can be done to take it back.

Going through this treatment has been emotionally tougher than I had expected it to be but its almost over. My last treatment is tomorrow followed by the welcome removal of these protective balloons and their dripping foley catheters. I went to see the surgeon last Monday because they were starting to show signs of infection, but luckily the signs and my elevated temperature subsided as mysteriously as they arose. He reassured me that they were not infected and also showed me the post surgery MRI showing no trace of tumor, just the two balloons. Very good news.

When I was afraid of infection I realized that I really did want the radiation treatment to be possible. Intellectually it troubled me to think of treating a radiation induced tumor with further radiation. It helps me to go through with the radiation knowing I was more afraid of not having it than than I am of being zapped by these incomprehensible potentially healing rays.

Thursday 10/27

It seems like every time I breathe a sigh of relief a new challenge arises. My last radiation treatment on Tuesday went smoothly. I took some extra pain medication in the morning because I worried that the tube removal would hurt but it was easier than I feared. Both balloons deflated well and the docs pulled them out quickly as I lay stoned on the table. Also, I finally got good news from the genetics counselors in the afternoon. All the test results were back and I don’t have Li Fraumeni syndrome, a rare genetic disorder that would make me more susceptible to many different kinds of cancer. This is especially good news because it is not just me but my family members who could have been affected.

By the time I got home in the late afternoon, I was very tired and that evening my temperature started to rise. Since then it has been wavering between 99 and 101 and when it is higher I feel very crummy. There are no oblivious signs of infection at the catheter sites, but I got a call from the doctors this morning and they have scheduled me for an MRI tomorrow to rule out the possibility of an abscess.  I so wish things could be easier for me. I’m taking lots of naps and watching lots of tv shows on my iPad. Its like hanging on to a little raft and waiting for better internal weather. It certainly looks beautiful outside my windows.

Surgery number three went much better than  I anticipated. I can walk without a brace or other assistance and my left foot and leg are as strong as they were before surgery.

Last Friday, my surgeon who is fond of food related metaphors, removed an egg size portion of my sacrum and my S1 nerve root ( a noodle with tumor sticking to it like spaghetti sauce) along with the gum ball size remaining tumor. He said it was a very aggressive surgery and with the sacrum out of the way, he was finally able to remove all the visible tumor. The surgical team also successfully placed two foley catheters with saline filled balloons between my sacrum and my bowel. The balloons will stay in place until I’ve completed radiation treatment in a couple of weeks.  Time in the OR was seven hours.

I woke up in recovery that evening  with a sense of elation at once again coming back from the unknown, and this time, no nausea. I slept most of the night and Saturday morning I was able to eat some scrambled eggs and oatmeal. It was more tasteless than I remembered from my previous visits, but I was eating regular food!   The physical therapist got me to stand with a walker and my foot wasn’t floppy but my blood pressure dropped. After a couple minutes standing, it dropped further and everything started to go dark.  Back into bed with a bolus of fluids on the IV pole.  That evening, I walked on my own with a friend. We were surprised and delighted that my left foot and ankle were as strong and functional as ever.  It took me a day or two to believe that the surgeon had really removed the nerve root.

Late Saturday night, the nurse told me that my blood levels were low and the doctors recommended a transfusion. At first, I resisted. I was so happy I could walk and I didn’t feel bad. I asked if they could check my blood levels again. I would agree to a transfusion only if it was still needed. The second blood test revealed that my levels had dropped lower, as the doctors predicted, so they ended up transfusing me with two units of blood to replace what I had lost during surgery and post surgical drainage.

Sunday, Monday and Tuesday I continued my most important activities in the hospital: walking, eating, visiting with friends and family and lots of napping.  I got stronger each day with only a couple of setbacks. I have learned a few things about life on this particular hospital floor after three extended visits. Each time I was more impressed with the nursing staff.  My first visit, I thought they seemed busy, pressured and unfriendly. During my second stay, I came to appreciate  the constraints they work under and how many communication snafus they tried to prevent or untangle.  Still, I felt hesitant to push the call button as often as I wanted. I tried to remember my questions and group them together and to fend for myself when I could.  This third stay, it seemed the nurses were uniformly great.  I was able to make connections with them and they acted as advocates on my behalf with the doctors. In a complex cases like mine, with multiple disciplines involved, it can sometimes be difficult to figure out who has the authority to do something as seemingly simple as a dressing change.  Early in my stay, one of the nurses started writing a list of my current questions and issues on the white board in the room and the other nurses continued this.   Someone also started to write when my next dose of pain medication would be available and what my options were for breakthrough pain. This helped me relax because I could plan ahead and didn’t have to rely on my memory, or the nursing schedule, or wait for pain itself to remind me.

I don’t think the first group of nurses was different from the last, ( some of them were the same people), I think over time I learned to communicate with them more effectively. I tend to error on the shy side of asserting myself, but these hospital stays have reinforced that when it comes to protecting your own health  you can’t rely on the system to do it for you even if is full of competent and caring people. It is best to question everything and even more effective if you, or someone close to you, can figure out a way to do this and still comply with the golden rule, especially difficult when you are helpless and/or in pain. It certainly helps to know about medical culture.  To most of us the hospital environment is a very foreign land with weird languages and mannerisms. Most of us could use a translator and cultural guide on our visits to the purgatory of hospital land.

When I was finally released to go home late Tuesday evening, I enjoyed gliding through the dark streets as a passenger on my way to my new home. I had been unpacking up to the last minute before surgery and now i was finally coming home to rest and recuperate. As it turns out the few days I have been home have been full of ups and downs. But the good times resting quietly, enjoying meals with friends and taking very slow walks have far out weighed the times of discomfort  and worry. The last two mornings I had to return to hospital and clinic land for pre- radiation scans. Cyberknife treatment may begin as soon as next Thursday. For now, I feel I’ve made a safe passage around the horn of Africa or some other perilous sea am anchored in a safe harbor until it is time to launch out to open water again.

I hope to write updates more frequently and welcome your questions and comments.

I write to you from the comfort of my new studio apartment in San Francisco a couple blocks from the Balboa Theater and walking distance from Golden Gate Park and Ocean beach. It’s so quiet that I can hear the distant fog horns and the occasional gull. I’m thinking of this as my recuperation nest for the next several months. I have surgery number three scheduled for September 30, followed by cyberknife radiation and then my great new oncologist and I will discuss the wisdom of adding chemotherapy.

I found my apartment and signed the lease within three days. I immediately felt at home here. This place just fits me and I  realized this is something I’ve been wanting for a long time.   I haven’t lived alone since I was in college and moved out of the dorms. It feels like I’ve come full circle in some way. I feel some of the same excitement I felt then when my life was opening before me with so many possibilities. I’m facing very different possibilities now but I retain the sense of new beginnings  I signed the lease the same day my treatment team proposed surgery number three to me.

The surgery proposed will be more extensive than the first two and will involve sacrificing my S1 nerve root as well as a portion of the bone from my sacrum. I will need to wear an orthotic device on my left foot and ankle to walk and its possible that I will have some chronic pain after the surgery. During the surgery, if it is safe and feasible, an interventional radiologist will install small saline bags in front of my sacrum to move my small bowel out of the way and protect it from radiation exposure during my post-operative cyberknife treatment.  How much function and bodily integrity am I willing to risk for a chance at disease free survival? The phrase that came to me to describe this treatment is high- tech medieval.

When I first heard the proposal I had no idea how or what I would decide, but within three days I made my decision to go with aggressive surgery.  My new apartment was the first place I looked at, I almost didn’t go see it and I didn’t really know it was right for me until I was moving in. But the ease of this process helped me trust that my intuition is working on my behalf behind the scenes all the time even in my medical journey where nothing has been smooth or comprehensible.

Several weeks ago I set up an appointment with my former oncologist, just to update him on my current situation and get his perspective. It happened to be two days after the Call. He sat across from me and listened to my account of my medical odyssey, ending with the new surgery proposal and the difficult decision I had to make. He leaned forward took my hands and looked me in the eyes and said. “Choose the surgery even if it means you will never walk again. Sarcoma is a bad actor and surgery is your best hope for a cure. If it is not controlled locally chemo and radiation won’t be able to keep up with it. You are resilient, strong and you bounce back better than anyone we know. I am so sorry you have to go through this my friend.”

His blunt appraisal resonated with something in me. I was stunned but I also noticed I felt lighter after I left his office. The next day a nurse practitioner and homeopath I have known for years, shared some advice her son was given in driving school. “There are many tips and tricks to help you drive defensively and avoid accidents but if you find yourself in a very bad situation, here is your best chance for survival:  Look ahead for any available light, orient yourself towards it, and gun it.” After I left her office, while I was eating lunch, I felt something shift and settle within me. That afternoon, I  wrote the following message to my surgeon and treatment team.
****

I would like to proceed with the surgery and radiation treatments you  have proposed as soon as you think it is feasible. I believe I have the best chance of local control and long-term survival if the tumor can be completely removed.  The nerve pain that developed after my second surgery has stabilized but not  improved. Your recommendation, the MRI results, and a conversation with the oncologist who treated me in 2006, have convinced me that delaying surgery is not in my best interest.

It was important for me to write this message to communicate my decision to my doctors and to solidify it for myself. There is no right answer. There are as many valid approaches to treatment as there are individuals who have to make these decisions.  It’s not that I don’t have doubts and I’m certainly daunted at the prospect of a long uncertain recovery. It’s just that I feel more settled and trusting of my doctors and myself.

It’s great to have this move to occupy and distract before surgery. I also have a daily walking Chi Kung practice for the last three plus years and which has grounded me in ways that are starting to become apparent. I still have so much to learn and practice but I’m so glad I have this foundation when I am overcome by the weirdness of it all.

First I want to report that my daughter Sia has just finished her first week as a freshman at Westminster college. I think it is a good sign that she is not feeling too homesick that her first message to me, was: Love you Mom, classes are awesome, could you please send me the items on this list…

I’m so glad I was able to make the trip to Salt Lake City with her and I’m impressed with the support Westminster provide for their students. Her room mate’s family lives locally and they invited Sia to come  to their house for home cooked meals on weekends. Yeah, she’ll be fine.

Sometime last weekend, I realized that sending Sia off to college marked the end of my period of useful denial. My desire to protect her from my fears and doubts was a great incentive to protect myself from them too.  The first couple weeks of recovery from surgery were straight forward, then I developed nerve pain in my left foot and leg  that seemed to be slowly increasing. Since I returned from Utah it seems to have stabilized and even subsides overnight sometimes. This pain as well as feeling ill sometimes as my digestive system struggles to regain it’s equilibrium after surgery have broken down my denial. Also, the post surgery pathology reports leave no doubt that my tumor is malignant. My pipe dream that the doctors would say, “Guess what your tricky tumor fooled us again, turns out it’s benign after all” – went up in smoke.

I returned home to the freedom and quiet of an empty house where I no longer had to make any pretense of keeping up appearances. But I also returned to a week of scans and tests results that have brought little good news, even more uncertainty, and glimpses into the tough times that lie ahead of during treatment.

The good news- new scans this week show that my tumor has not spread to any other organs. Also, the docs have been communicating with me and with each other, and consulting the doctors at other cancer centers to develop the best possible treatment plan for me. I feel I am in the best hands possible and am in awe of their expertise and dedication.

The complications – The next planned step in my treatment was radiation therapy. Even though this tumor may have been triggered by the previous pelvic radiation I had in 2006, the current evidence shows that radiation for this tumor will provide the best chance to prevent the tumor from growing back locally. My intuition is on board with this, which surprises me. I’ll think of it as an extreme form of homeopathy. The problem is that my small bowel which is right next to the tumor has already received close to the maximum dose it can safely tolerate. It is important that the radiation be targeted precisely with minimal dosage to surrounding tissues. My radiation oncologist, thinks the best option may be  five to ten sessions of Cyberknife radiation. He is also considering proton beam radiation. I had a Cyberknife simulation session last week and then when I was in Utah I got a call asking me to come back for another simulation session laying face down because my bowel was too much in the way. I got another call early this week asking if I thought I was able to lay on my belly for an hour. I said “I don’t know, but I guess I’ll find out.”   The radiation oncologist mentioned that if laying on my belly doesn’t work,they have been talking to the docs at Memorial Sloan Kettering who routinely do a percutaneous procedure in which they insert bags into the abdomen through little slits and fill them with saline pushing the bowel away from the tumor and protecting it from radiation exposure.  I half expect to get another call asking – Can you pat your head and rub your belly while singing Amazing Grace?

The most distressing news is the results of my latest MRI on Tuesday. There is a rim of tissue around the edge of the tumor excision site that has grown thicker since the post-op MRI in the hospital just a few weeks ago. It could be scar tissue or it could be the tumor is already starting to grow back again. Post surgery scans are very hard to interpret. The oncologists and surgeons are discussing what is best to do next and will be contacting me this week. It is possible I may need surgery number three. My poor belly cringes at the thought. I’m trying to trust my initial intuition that whatever happens I will be ok. It is getting very difficult and sometimes overwhelming.

In the midst of all this, I went to look at a very attractive studio apartment this afternoon not far from where I live now and closer to a nice little commercial neighborhood. It  would save me a lot of money in rent and utilities and do wonders for my sense of financial security. I’m going to sleep on it, but if it’s offered to me, I think I will take it. I also decided to go on full disability. I’ve been working a bit between surgeries and while I like my job a lot, I realized I need to make my health and creative expression my top priorities.

Every time I think I am starting to adjust some new challenge comes along. Writing makes me sound a lot more together than I feel. It also helps me put myself back together when I fall apart.

Where to start?  I have been home for a week and my physical recovery has been going well but I have been struggling with a profound sense of displacement. I recognize my home and my familiar surroundings but I am sometimes alien to myself. My leg feels different after surgery. Is this a permanent difference or something that will resolve as it heals? What treatments lie ahead of me and how will I respond to them? What does it mean to me to be living with cancer again? How do I negotiate the reactions of those around me? On top of all this my daughter will be leaving home for college in just two weeks and creating a new home for herself in the world. That change is unsettling enough for me with out all the rest. I’m having an identity crisis. And then I laugh, thinking how one of my dear friends would respond. ” Idenitity, what’s that?”

Here are some details,

I returned home from the hospital Monday Aug 1st and my daughter got back from London later that night. It’s been an adjustment being together again after such different experiences, but her jet lag matched my post-op fatigue, so we have both enjoyed napping and I’ve enjoyed listening to her travel stories while being jealous of her opportunities. She turns 18 on the 18th and we are flying to Salt Lake City on the 19th so she can move into her dorm room at Westminster college.

I will be returning from that trip to face more specialist appointments and treatment decisions about radiation and chemotherapy. I know the post op MRI showed that all of the tumor has been cleared from my pelvis except for ‘a small nubbin’ ( the surgeon’s description) remaining near my nerve root. The results of the post surgery pathology report and second pathology opinion are not available yet. I should be hearing from the neuroradiologists this week and I have an appointment with a new oncologist, on 8/26. I know that every time my phone rings in the next couple weeks it could be doctors with news I may or may not want to hear.

I’m trying to stay focused on enjoying recovery but the prospect of facing more important decisions and as yet unknown treatment is daunting. I’m struggling to figure out what my new ‘normal’ will be. I have been reading two books this week. One of them is ” Inside of a Dog” a totally fun fluffy book about how dogs sense the world. The other is Anti – Cancer. I noticed that the other David Servan-Schreiber, who died recently, kept his own cancer a secret for many years.

Right now, I’m feeling set apart by illness. Others engage with me as though I already have a new identity. Last week we visited an acquaintance and he remarked several times on how well I looked. He lost a father to cancer. He said that he used to think of cancer as a death sentence, but now he knows its not true, still he can’t help but be surprised that someone who looks so normal harbors a tumor. The instinct to separate is a natural one with acquaintances, and maybe even stronger with those we know well. It is one of the ways we try to keep ourselves safe. When someone I know through Commonweal has a recurrence or dies it reminds me that the same thing could happen to me. It is natural to look for differences between us, things we do or believe differently that we hope will keep us safe. It also imposes an artificial separation between us, creates distance where connection would be more healing. I want to think about and write more about ways we can make connections across the constructs of illness and health.

Last Thursday I got the news that my post-op MRI revealed
that a portion of my tumor remains inside me. The surgeon removed all he could
see and access approaching through my back but because of it’s location a good
part of it remained hidden. I surprised myself by moving quickly from shock, to
questioning, to completely revising my plans for August and letting go of plans
that were dear to me. It just became clear that surgery as soon as possible is
what I want.

Tomorrow at 8:30 am I will have a second surgery with an approach through my
abdomen to remove the remaining tumor at UCSF Long Hospital on Parnassus or as a
nurse friend of mine calls it- Big Serious. I’ve been listening to my classic
Bell Ruth Napersack, Prepare for Surgery cd over and over again and I am
trusting in my demonstrated abilities to heal well and quickly. But Yikes this
is daunting.

Here is the one dream that I’ve remembered in the last few weeks and it destined
how I feel about the treatments that are ahead of me.

7/21
Dream before waking. I was out in a beautiful forest somewhere near Yosemite
with a biologist who was doing a study to assess the environmental damage to a
plot of land. A large blue and brown butterfly-moth fluttered near me. The
biologist wanted me to catch it for the study. I reached out and pinched his
wings between my thumb and forefinger. I could feel him struggling as I tried to
hold on tightly enough to keep him without crushing his wings. The biologist
came over and ran a swab over it to take some type of sample. Then I released
the butterfly-moth and he flew erratically up into the sky. He appeared
disoriented and I worried that I had damaged him too badly to survive. As I
watched and worried he landed on a rooftop and a few other butterflies joined
him. I woke up still feeling the energy of his struggle as I held him between my
fingers.

Something that has come to me clearly through this crisis is that writing and
sharing what I write is a lifeline for me and will help me get through whatever
lies ahead.

I was sitting outside in the late afternoon sun two days ago after two MRIs looking over the China Basin canal at the houseboats along the shore and basking in a sense of well being and decided it was time to share my latest news with this group. Though it is impossible to find the right words, the process of trying to find them and share them with you in a meaningful way is healing for me.

One week after surgery just as I was about to sit down to dinner, my phone rang and changed my life (and my loved ones lives) again. The tumor that had been successfully unwrapped and removed from around my S1 nerve root, proved upon closer examination to be malignant. It has a new name, pleomorphic undifferentiated sarcoma and there is a fair chance it was triggered by the radiation treatment I received in 2006. This new diagnosis is a classification of exclusion; the pathologists have ruled out metastases and several other types of cancer, but they are unable to determine the tissue of origin and classify it as a specific type of sarcoma. I have been meeting with and talking to some great docs at UCSF and will pursue a second pathology opinion.

You have all received, or love someone who has received news like this. One surprise for me is that this time around I’m holding it differently. I don’t feel ripped off by the universe by having the rug so abruptly yanked out from under me again and I don’t regret past treatment decisions.

I hoped never to face the kinds of treatment decisions I will be making. The tumor has been removed, but my surgeon told me it had the consistency of mashed potatoes and he’s sure some was left behind even if its undetectable. If I do opt for the cyberknife radiation treatment and intense chemotherapy that are currently being recommended, the only way we will know if it’s successful is if no metastases show up. I face the big dilemma in the current state of cancer treatment. We know that the current standard treatments cause collateral damage. In giving and receiving these treatments we hope the that we are doing more good than harm. The research on finding more targeted treatments is promising and also in it’s infancy. I am fascinated to see what the future holds in this area but it may not be a viable option for me now.

I am gathering information and adjusting to my newly named situation at a rate that reminds my of the title of a fine short story by Grace Paley, ‘Enormous Changes at the Last Minute’ I keep coming back to my initial intuition that whatever happens I will be fine. So I have to be open to the whole damn human experience, not just the parts I would choose if I ruled my world. I also have deep trust in my body’s innate ability to heal itself in whatever way is possible.