Friday, November 28, 2008

November 28th, 2008: Bit o’ blog maintenance and explanation. For the first time since I started writing these entries, I took a couple of hours this afternoon and read this blog starting from the first posting. Along with some poignant memories, I realized that three postings—November 7th to 9th; November 12th and 13th and November 26th—never made it from my draft into the blog. So, I went into the guts of this software and deleted all the postings back to November 10th and 11th and re-entered all the subsequent dates including the missing entries. In doing this, I also deleted the comments that had been made along the way. Check out the material for the three dates that were never posted.
November 27th, 2008: For decades, my two favorite holidays have been Thanksgiving and Passover. Thanksgiving celebrates communal abundance and reaches into gratitude for being alive. Passover celebrates the escape from tyranny followed by establishing trust with the divine. In the past dozen years, Thanksgiving for me has also meant going to Gaetano’s house for dinner. Every year our ritual after the food is to go around the table and allow each person to talk about their current feelings of gratitude. Last year, I was grateful to have a country home in Glen Ellen where I could reconnect with the rhythms of the seasons by digging in the garden, chopping firewood, mulching soil, trimming, raking and nurturing. This year, I am grateful to be alive in spite of my health crisis. Over time, I’ve listened to many men at Thanksgiving table express their joy in still being alive in spite of HIV or other challenging illnesses. This year, it’s my turn to say those words.

As we went around the table tonight, the annual depth of feeling unfolded. Everyone is grappling with the profundity of urgent and significant life lessons. This year, we went around the table twice, because people were triggered by a previous share or were reminded of some other revelation leading them to awe and humility.

Although I’m now sitting at my keyboard—having finally excused myself from the table—I have another important gratitude to express. I am grateful to the readers of this blog and the support that all of you have brought to my struggle to start treatments and now, with my chemo courses advancing, my work to hold the chemo energies in my body so that the cancer can be killed and the rest of me can live. I have never asked a far-flung community to help me survive. It’s an amazing act to reach across the electronic grid and say, “Help me.” And so gratifying to hear word back, either directly or via the vibes, “Yes, I’m glad to help you.” For many years, I’ve known the blessing of care giving. Now, I feel the warmth and trust of being well cared for. This is huge for me. Thank you, thank you.
November 26th, 2008: It’s been difficult for me to remember that the chemo is still a very active in my system. For example, my hair started falling out two weeks after I was unhooked from the infusions. More insidious has been the onset of fatigue in my life. Tuesday the 25th and Wednesday the 26th of this week have been crippling for me because I’ve had no energy. Tuesday it was so extreme that I simply couldn’t go in to the office. I was able to work from home, but the effort to get out of bed astonished me. The missing piece is that I keep forgetting that the chemo has set of a chain of events that I largely don’t understand and certainly haven’t learned to account for. What I’ve learned in the past few days is that my body’s struggle to slough off the dying cancer cells is just one of many unprecedented events that are going on simultaneously. Red blood cells are also dying. Ditto white cells. Other fast growing cells are also being killed off, and in the meantime, my body is laboring to keep life sustaining functions going. I’ve tried to imagine a suitable metaphor. Is it like being in a row boat on the surface of water that is roiling underneath? Is it like flying in a small plane through a major thunder storm? Maybe, except in my case the turmoil is internal rather than happening on the outside.

In therapy on Wednesday, I spent half the hour weeping because I was so confused and overwhelmed. That served me to realize that I am entering new territory, and I don’t have a guidance system to direct me. These guidance systems exist. Millions of people have gone through chemo before me, and the general effects have been duly charted. Right now, my largest problem is a lack of information about what to expect. When I’ve talked to people who have gone through chemo or people who have witnessed chemo in others, they are much more matter of fact about my experience. “Sure,” they quickly agree, “It’s the chemo.” I find this very reassuring, because it moves my frustration and disorientation into the realm of the normal. I don’t understand what’s normal anymore. I can remember what normal used to be, from the days prior to chemo. But what can expect going forward? And what are the compound effects of several chemo sessions?

There are a couple of solutions that I intend to use. (1) Ask medically astute people in clinic and in the hospital about the effects of chemotherapy over the period that I’ll be taking it. (2) Join a sarcoma support group so that I can hear from other people what they are going through as well as have a forum of listeners to my experience. Going through this blind and unknowing is not good for me. It’s one thing to be exhausted. It’s another to be exhausted and not know why. I spent the last two days enduring the latter.

Small favors category: for the first time since I started shaving, I don’t have to do that every day. I can’t say that my beard has fallen out; it’s still there. But its growth is so diminished as to not require trimming for five or more days at a stretch. Lovely! I’ll take that time out from responsibility.
November 24th, 2008: I’ve saved a cup of hair, and I’m planning a ritual at the time of the New Moon, this Thanksgiving morning. I’ll write text about releasing my hair back into the world. This is an offering I make with sacrifice and gratitude. I give up my body hair. I become less protected and more vulnerable. In a curious way, I step outside of adulthood. I do this willingly. Then, I’ll crinkle the paper and put it into a bowl. I’ll sprinkle the hair over the paper, go up onto my rooftop and light the paper. Paper burns, hair burns. Fire sends the solid elements into the air. The remaining ash, I’ll take downstairs and run water through the bowl, down the drain. All four elements will take part in this ritual.

Today, I have perhaps half of my hair left. You can see through to my scalp. With a humorous clairvoyance, my friend John Andrews stopped by for a visit. “Do you need anything?” he asked before arriving. I couldn’t think of anything, so I said, “Just bring you.” Instead, John brought a major collection of hats: a three-cornered pirate hat, a one-of-a-kind purple velvet with leopard trim hat, a Santa Claus hat, a knitted winter hat, and—my immediate favorite—a Mongolian felt hat with embroidery. I immediately bonded with the felt hat and plan to wear it daily: to work, on the cross-town bus, shopping, etc. I'd guess that by Thanksgiving night, I'll be bald, except for maybe a few eyebrow hairs.

I woke up this morning looking forward to going back into the hospital. That didn’t seem at all strange to me. My body is ready for more treatments. The first round of chemo, nausea notwithstanding, has been so helpful, that I want to keep going forward. And forward for me, right now, means more chemo, more hospitalizations. This rhythm of five days on a ward getting infusions then three weeks out the world where I can absorb the drugs, five days, three weeks, etc. seems to work for me. What I have been cautioned about from the medical side as well as from people who have traversed chemo is that there is a cumulative fatigue from the treatments. Well, OK, I can deal with fatigue. Today I took two naps so I guess I am ramping up for exhaustion. Underneath all of this tiredness, yearning for the hospital, belief in the healing powers of chemo is a sense that this is my way through the maze of healing. This is how I will get better. There’s a definite giving in to forces that are powerful and at times overwhelming, but my strengths are pliancy and endurance.
November 22nd, 2008: Today I was talking with my friend Martha Thomas who I see every summer when I go to Santa Fe for opera. Martha suggested that my current inability to listen to classical music might be related to my pain medication. Bingo! When I started taking light amounts of meds in mid-July, I still had an active listening life. Once I started taking Percoset after my hip replacement, I could no longer tolerate the complexity of many instruments playing at once, let alone orchestra plus voices. My mind can’t hold the multiplicity so to protect myself I either turn it off or zone out. I won’t be on meds forever, so it’s a relief to know that this spell will pass. For now, pain management is more important. It’s an interesting tradeoff: during this illness, I cannot have the comfort of music.

Back to the subject of whether to continue to recite the welcoming invocation to the chemotherapy drugs. The chemo is still at work in my system. Major proof appeared last night in the middle of a shower. I happened to glance down at the bottom of the tub after shampooing my hair. To my astonishment, the entire floor of the tub was covered with hair from my head. It was like I was standing on a felt rug. However, all of you are welcome to take a pause if you like for another week. I’ll let you know when I go back into the hospital, probably around Dec. 1st. Once there, the chemo will start again in earnest, and that’s when my body can most use the support from all of you. Again, many, many thanks for being part of this collective effort to help my physical self drink poison with the intention of getting better.

Terry Conner is a friend who comes to my apartment and gives me wonderful Reiki sessions once a week or so. I’ve avoided creating an agenda for those sessions. With no advanced plan, each experience seems more creative because what appears during the touch isn’t forced. This morning, I was prone on my massage table, enjoying nothing in particular when it occurred to me that I don’t make direct contact with the tumor in my pelvis. I have had visualizations about the tumor, but we don’t have what I would call a direct relationship. I don’t talk to it. Never, since it first came into my awareness on August 29th of this year have I asked its name or given it a name. During the debate—melanoma or sarcoma?—I wondered what kind of tumor it was. But that isn’t very personal. Of course, I feared it. I worried that this tumor might kill me or lead directly to my death. I feel it as a physical impediment, and I use the pain from the tumor to manage my medication dosage. Otherwise, my response has been: ignore it. This morning, flat on the table, I realized that I could talk to the tumor. And the following conversation took place:

Geo: Can you respond?
Tumor: Oh, yes. I’m very expressive. And patient. I’ve been waiting for you to contact me,
Geo: Waiting for me?
Tumor: Yes. Please remember, I’m the one making the sacrifice.
Geo: Sacrifice?
Tumor: Yes. I grew to get your attention. I will die first. I know that.
Geo: Why? Why have you done this?
Tumor: You’ve been growing out of balance. Part of you is growing rapidly and part of you is stuck. Your body can’t support this tension.
Geo: Can you give me…?
Tumor: An example? Yes, food. You don’t eat food your body needs. For many years you’ve eaten whatever you want. But you eat for your mouth, not for your body.
Geo: I’ve changed my diet in the last three months.
Tumor: Yes, you’ve learned from me. You’re afraid of me. You don’t want to die. You’ll even change your diet!
Geo: My tumor, my teacher.
Tumor: I have a great deal to teach you. A great deal.

End of dialog. Clearly there’s a lot more here. Through the rest of the Reiki session, I lay on the table, amazed that I could know about this cancer for almost three months before venturing to address it directly. And more amazed that the tumor could have such an interactive intelligence, let alone take on the task of growing in my body to help me to wake up. This direct dialog seems as important as using my healing center. There are so many ways to cultivate health and healing.
November 20th, 2008: Hair, hair, hair. As I was getting ready for bed last night, I happened to comb my hair and—sheesh!—whole clumps came out of my head with no resistance. It’s a good thing I’m not more compulsive otherwise I would have had serious patches of deforestation. Turns out that many of my good friends are bald, balding, etc. and they have asked offline about what is it with me regarding no hair on the top of the head. I did an inventory of those attitudes, and for me, it all goes back to wanting hair to cover my considerable scar left over from the surgery on my upper left forehead when I was one year old. The same surgery that took me to UCSF for the first visit back in 1947. As a little kid, I was sensitive about that scar and wanted to hide it so that I wouldn’t have to answer dumb questions about why it was there and is that where they took my brains out, etc. For me, hair was a defense, and I only really needed it on that one part of my forehead. For all of my life, my hair has covered my scar. I don’t have big overlaps with baldness and debilitated old age, lack of virility, or even: doesn’t look good. I just have one agenda and that is to use my hair to protect my vulnerability.

As I stood here staring at the clump of hair in my hand just before bed, I thought of all the times that I had started an initiation into a religious order by having my head shaved. I mean in past lives. I’ve had lifetimes in various Catholic orders where shaved heads were a symbol of belonging to the community. At least once, I was in the Shinto priesthood and that ordination included shaving my head. But what about now? I am not entering any orders. However, cancer and chemo involve rites and responses that are life changing. So I stood there with my clump of head hair and concluded, “More to be revealed.”

In the morning, there were a few strands on my pillow. Now, for my hair to come out, it needs a bit of a tug. How odd, I thought: within hours of Dr. Jahan’s surprise that I hadn’t lost my hair, a great gong went through my head and the follicles started to empty their contents. I decided to call my barber and see if he had an appointment to take the bulk off of my hair and cut it down to between 1/8th and 1/4th inch. He did have an appointment.

Geo: “Pat, my hair is falling out from chemo. Could you please shave me down really close to my scalp?”
Pat the Barber: “Oh, man, I don’t want to do that. You’ve got great hair. Keep it longer.”
Geo: “Everything changes. My great hair is leaving in clumps.” Whereupon I reach up to the crown of my head, grasp some hair and pull the entire handful out and show him.
Pat the Barber, suddenly alarmed: “God! What did you just do?”
Geo: “As I said, my hair is falling out.”
Pat the Barber: “Got it. I’ll take it way, way down.”

Which he did. However it just looks like I have a short haircut. Also, especially right on the crown, my scalp is very sensitive. It hurts to touch the skin with any pressure. It’s as if the entire area is traumatized.
November 19th, 2008: This was a day when a lot got accomplished. I started the morning by talking with Jocelyn Dubin, a nutritionist in Santa Cruz recommended by my friends, Wendy Ostrow and Shoshannah Orzek. Jocelyn has focused her practice around helping people with cancer fine tune their diets. She had great ideas about more sources of non-meat protein as well as fish, fish, fish (healthy fish, not mercury-drenched fish). We reviewed my meals of the past three days and her critiques were helpful and easy to implement. I am very grateful for her advice because a big issue for chemo patients is loss of muscle mass. She had excellent strategies about keeping my body as healthy as possible during and after chemo.

A couple of hours later, I visited my therapist Susan Wachob who led the Gay Male Incest Survivor group that I participated in for five years during the last half of the 90’s. When I left group, it was with the understanding that I had found my deepest wound—my fear of my father—and that I had grown up and no longer feared him. If he went off for some reason, I had many tricks up my sleeve all of which worked. I could yell back at him, leave the room, kick his shin, demand that he cool it, etc. Although some of those responses are effective than others, the point was that I no longer felt in thrall to my Dad’s rage. It was only that: his rage. In the past few weeks, however, culminating in my healing center episode with the masked shaman who held my tumor aloft as it cried out against my Dad’s violence to me, I realized that it was time to return to therapy for another round of work. I would guess that this time, I need to work on the impact of growing up in a family where I was abused but could not complain. Or cry out. Or escape. It’s clear to me that I was taught not to ask for help. That I learned very skewed attitudes about pain and when I was in pain. In short, more work to do. It was great to see Susan again, and I am eager to get started.

Later in the afternoon, Eileen and I visited with Natalie Olsen, Nurse Practitioner, and Dr. Jahan. Natalie reviewed all of my current discomforts which are blissfully few. Then, Dr. Jahan came in and exclaimed, “You’re not bald!” Indeed I am not. He was very complimentary about my body’s tolerance for the chemo drugs and said that the next five day session would start at the beginning of December. His gift to me was Thanksgiving holiday out of the hospital. Go, eat, celebrate, relax. Of course it isn’t abnormal to have a visit with your oncologist be a fest of appreciation when things are going well, but this had never happened to me before. I am used to presenting myself as a multi-metastasized guy with a tumor that is difficult to diagnose. No one gets happy during that sort of visit. So now I am heading in new directions with new rewards. Dr. Jahan and I backed off from making mid-to-long range projections. The short-term plan is to go through the next round of chemo in a week and a half, do all the scans that will measure the changes in all sizes of all tumors and then make decisions from there. Ongoing good news: the main pelvic tumor continues to feel smaller and denser. It doesn’t hurt to the touch, but there is definitely something there. But then, that’s one of the main points of this blog: there is something there.
November 18th, 2008: My thanks to each of you who recited the invocation that welcomed the chemotherapy drugs into my body. It is amazing to know that people are chanting these lines in Europe, across America, intensely in Northern California. That is a lot of energy, and I am very grateful to each of you for participating with such determination and hope. People have asked, “Should I continue to do this, even though you are out of the hospital?” I know the chemo continues to work in the body for a period longer than the hospital stay, but honestly, I don’t have a firm answer at this moment. I will know the answer soon.

Tomorrow at 4:30 in the afternoon, I have my second appointment with Natalie Olsen, Physician's Assistant, and Dr. Jahan, the mastermind of my treatments. I'll ask about how long chemo continues to work. I’ll let you know what he says. I'll also ask about dates for my next hospital visit and the strategy moving forward. Don’t expect hard-coded dates, but there should be a larger plan materializing. This way, everyone will know what to expect over the next month, month and a half. Details tomorrow. Sweet dreams, all.
November 17th, 2008: Lovely weather enclosing a relaxing day and a few hours at work. I came home to an email from my friend Cris Maranze who wrote about attending a somatic healing workshop over the weekend. Many of the women in the seminar talked about the deep shame they experienced from their diseases (cancer, fatigue, etc.). “Hummmm,” I wondered, “have I felt any shame about having cancer?” I couldn’t remember those feelings which seemed odd. After all, a major attitude about illness in this culture blames the victim. People with HIV? Shameless wantons. Heart disease? Out of touch with feelings and no restraint with fat and sugar. Cancer? Well, what are my assumptions about cancer? Unexpressed anger and rage, I suppose. So if I have shame about my cancer, where do I put it? At that point, I realized that I have issues about being bald from chemo, as if my baldness would brand me as a cancer patient for all to see. Yes…and…so? I asked myself, what would it be like for others to see me and know on sight that I have cancer? Next step, I remembered those loathsome stories of lepers during the Middle Ages who were condemned in some principalities to walk forth clanging a bell while muttering, “Unclean, unclean,” to ward others away from contagion. Yes, I thought, that’s a deep taking on of shame. Imagine telling others: “Stay away from me. I can infect you. You can die from contact with me.” Whew! Imagine that level of outcast-ness. As I mused on all this weirdness, my next door neighbor knocked on my door. “I found a package for you downstairs,” he said, handing over a shipping envelope. The present was from my friend Marjie Anderson in Colorado, and she had sent me a beautiful knit winter cap with cashmere-soft lining. Don’t want to be bald? Wear a cap! And not just any cap; wear a stunning cap. This is not to dismiss the issues I’ve started to feel about my cancer as a public and private event. More on that forthcoming. Still, it’s always good to have options, especially options to being oppressed by shame.

Later this evening, I went into my healing garden and listened to the Dalai Lama recite Tibetan Buddhist sutras. Seems that the Dalai Lama had recorded this chanting and sent it to his friend Vaclav Havel during his bout with cancer. My friend Ulrike who lives in Stuttgart obtained a copy of the CD and sent me a version. First impression: the Dalai Lama has a very powerful set of lungs. Second impression: the Dalai Lama can reach into lower registers that would leave most basses gasping. The sound was surprisingly tuneful and sweet, not as staccato and abrupt as most sutra recitals I’ve heard. Third impression: OHM is a very, very powerful sound. The Dalai Lama sat on a cushion atop a open lotus pedestal (a new and timely addition to the garden). He was located a distance away from my feet so he actually sang up my body from toes to head. It was like long surges of sound sweeping through the length of my self, wave after wave of toning. Thank you, thank you.
November 15th, 2008: I awoke at 5:18 a.m. this morning and glanced at the clock. “Oh,” I realized. “In nineteen more minutes I will have been born 62 years ago.”

It’s true! Today is my 62nd birthday, and my gift for everyone is my birth story; meaning, what I experienced at the time of my birth. Most people don’t have memory of their birth although they may have heard stories from their mother—if she remembered—or a family member at the delivery. My memory came back to me during a workshop that involved strong breath work. It unfolded in three distinct parts. At first I remembered the brilliance of light as I crowned and my body surged out of the birth canal into the world. “I got here!” was my thought. I knew that I had reached my goal. I knew that being birthed was essential and that I had done it. Then—and perhaps most magical—once my entire body was free from my mother and I was completely surrounded by air cooler than her body, I realized that I had a body and I understood my body’s shape. I had extensions: arms, legs, head. I had a central area that held the extensions. I felt them all at once and saw their shape as a hologram in my head. It’s like I saw a picture of me that was defined by the temperature edges of my skin. It was my first awareness of my body: total, defined and here. The third amazement passed through me: I was in awe of how physical it was to be born. I remembered the pushing and the heat and the lubrication; the churn and muscle and thrust of birth. I was astonished at how body-based the birth process was. I got here. I have a very defined shape. I pushed through flesh. Those were my first thoughts in my first minutes of life. I don’t remember more as I settled into being a tiny baby, just born.

These memories are sent to all of you as a celebration of our all being born. We all got here. We all are here. What a privilege! As one of my first meditation teachers used to say, “Thank you for incarnating with me.”
November 14th, 2008: Friday: remarkably fine weather. Breezes so zephyrus and soft that my friend Betsy while turning to go to the gym this morning was entranced by the squashes and sunflowers arrangement on her fireplace hearth, half lit by sunlight. In wild inspiration she blew off the gym, dedicating herself to full appreciating the beauty of the day. I had a bit of a scuffle about getting my meds sent to a pharmacy; that took up most of the morning. But once in place, I headed into downtown for the first time in the week, a bit feeble but otherwise glad to be out in the world. Last night’s dinner had stayed down, breakfast was staying down. I picked up my meds and headed into work at around 1 p.m. There were tasks to do, and I did them. There is also the ongoing coming out process to people who stop and say, “Hey, how’s the hip doing?” If there’s time, I’ll ask them to sit and then give the three to five minute summary of my cancer, including, today, my first journey into chemo-land. If it seems appropriate, I’ll ask if they’d like the link to the blog. These are tender connections, and they remind me of how fragile and strong my illness is. And how fragile and strong I am. Two days ago at this time, I could ONLY lie prone on my bed. Today, I am making choices about what to do and how to replenish.

Over the past few weeks, I’ve been working to understand my relationship to my cancer. In the 1970’s Symington model, there was a great warrior ethic. Patients imagined voracious Pac Men that went around gobbling cancer cells. That never worked for me. When putting together the invocation to the chemo, I avoided most references to the war-like. So how can I model the struggle? The identification of other, and the choice to remove out-of-control growth? The closest I’ve come so far are organic gardening practices from the property in Glen Ellen. For example, we’ll try to use a natural product to eliminate a pest. This summer on a tour through the nearby Benzinger Winery, there were all manner of critters and brews that supported the complex vines and raptors and rodents and birdlife that sustain the overall grape harvest. But is this what my sarcoma in my pelvis feels like? No, not really. Perhaps some dialog work with the cancer or with the rest of my body. If you have thoughts out there in the blog community, please send your ideas.
November 12th and 13th, 2008: As we walked out of UCSF hospital on Tuesday evening, I realized that I had been infusing chemicals internally, but also I’d been on the 11th floor with no fresh air for five days. Since the 11th floor specializes in bone marrow transplant patients, the walls and windows are sealed to the max. No one goes over and opens a window for a bit of fresh air. During that time on 11, I’d been marinating in a chemical brew of artificial air and other accumulated hospital smells. I didn’t notice this until I put my clothes on to go home; they were rank with pharmaceuticals. “They’ll air out,” I promised myself. Then, stepping through the hospital doors into fresh air, I felt born back into the natural world. As Parnassus St. rises up to the hospital, the wind carries ocean saltiness and adds eucalyptus and cypress moisturized by fog. Now that’s a smell worth smelling.

Arriving home was not a joy. I was so wiped that I went directly to bed. My organized self was operating with great lethargy, but at some point, I took dinner out of the refrigerator. Hours passed. Around two thirty in the morning, I decided that regardless of my nausea, I had to eat. So I cooked myself dinner and ate about a third of the contents. In the past two days I usually had a few minutes between a drink of water and upchucking same. Not this time. Clearly, it was going to be a no dinner night. This pattern of going to bed exhausted, staying there, nauseated if I was awake and drifty if I slept defined my Wednesday. However, in the morning, I found a call from Sista Monica on my answering machine. Her voice was clear and strong. She welcomed me home and said, “I see you well.” Monica’s speech has a very physical embrace, and I felt held and comforted. She spoke directly to my heart. It’s a phrase that I hear but on Wednesday morning it happened to me; my heart was directly spoken to. Mid-day, the good Gaetano brought over some groceries that I had asked for. Reading the newspaper was a great cognitive effort so I mostly scanned headlines. If there was an interesting article, I couldn’t read my way through to the end.

As I lay in bed at home I realized that my nausea from smells from the day before had returned. With the chemo still in me, I gave off a repugnant aroma; not a stench mind you, but noticeable and unpleasant. Tripping through my olfactory memory, I realized how deeply I’ve settled into my body’s smells. I enjoy them and am happy to produce them. They are a layer of me. There’s my physical body, and my etheric wrappings and my smells and my clothes layer all mixing together in harmony. From the astonishing sweetness of fresh born baby smells through the strong rank of sweating with other guys during hard physical labor or sex or dancing, I’ve always liked the information of smells. However, smells aren’t a fetish with me. I’ve never collected used T-shirts or underpants; just not my thing. But on Wednesday, my memories of how body scents had sustained like an always present and welcome aura was thrown off by being offended. These smells weren’t my known aromas. I smelled like chemo. This was part of my contract with welcoming Doxo and Ifosamide, inviting them into my body. In retrospect, extreme reactions to scents is probably just a symptom of nausea. But it dominated my day and night.

Finally, by Thursday morning, I was nauseated of being nauseated. Rest wasn’t refreshing me. I called the oncology nurse and she immediately asked me, “Haven’t you been taking your anti-nausea meds?” “And what would those be?” I responded. “Didn’t the pharmacist give you anti-nausea medication before you left the hospital?” she wondered. “What pharmacist,” I replied. So, serious disconnect. Prior to discharge I had been given terrific information about what to do for inflammation of my chest port, temperature fluxuations, headache, etc. The missing piece of information, including a suite of meds was how to manage nausea.

The nurse was very aggressive. She had me back in the infusion center at 1600 Divisadero within the hour of our call, and by two in the afternoon, I was being treated with anti-nausea meds and a big water bag for hydration. It worked! As I drifted through the afternoon, my struggle to get better subsided. I simply was better. Within a few hours, I was home, sitting down to my first dinner in several days, washed down with clear, cool, luscious water. Pacing myself, I used the rest of my new energy to change my bed and put on fresh sheets and pillowcases.

I don’t want to raise undue hopes prematurely, but I will say that during the days of my misery, a strange feature was that my tumor which can be easily felt in my pelvis seemed to have significantly shrunk. Still there and still sizeable, but the opulence of its curve seemed reduced. I asked the oncology nurse about this. “Well, that would be wonderful. It might be a short term effect of the steroids which are mixed in with the chemo. Steroids reduce inflammation. But we’re giving you these drugs to shrink the tumor. Let’s hope it’s started immediately!” So, I offer it to all of you that the tumor feels smaller to me.
November 10th and 11th, 2008: On and off on Monday, I had hiccups. Nothing intrusive, they would last for five to ten minutes then go away. By mid-afternoon, I began to realize that my bowel movements which had been stellar through the past months that I’ve been on pain meds (since mid-July), were slowing down. People on pain meds learn to watch for constipation because the meds slow down peristalsis, the ongoing rhythm that pulses through the intestinal tract and moves bile. The task is to remain pain free and continue to defecate. I was out of balance, and with no more on my mind than answering the call of nature to urinate, I unplugged the tower and headed into the bathroom. Sat on the toilet and then, in a climax of releasing, proceeded to urinate, defecate profusely and vomit. The vomiting threw me logistically. The toilet was already too busy, and I couldn’t imagine pretzeling myself between my legs. So, I reached for a bath towel and for another couple of unpleasant minutes proceeded to empty, empty, empty.

Unfortunately, that visit to the bathroom turned a corner that had not been anticipated. In a few minutes, I went from a comfortable, adapting-well patient to an increasingly nauseated, unable to retain food or water sack of misery that lasted until today (mid-Thursday). Three days of unexpected exhaustion and nausea.

There are many pitfalls to chemo: fevers, headaches, fatigue, nausea, diarrhea, tremors, constipation, etc. You don’t want to play any of the cards in that hand. And I held on to two of those symptoms—nausea and fatigue—for a very long time. So, what happened in that time? For one thing, I stopped eating. I could not eat. Smelling food was a serious challenge. Thinking about food became an obsession and a bother. If I tried to eat anything, I would stay down for as little as a minute, as long as half an hour. But always the same result. After I lost all the food in my stomach, it was time to vomit bile which continued for another day or so until even the bile was evacuated. I am not horrified by vomiting. I can do it easily and when I have to. But sequential vomiting was clearly depleting; sequential, by the way, means every two hours or so. Throughout this time, my good cheer and energy evaporated. I could barely read the daily paper, let along the more challenging books I’d brought for entertainment. DVDs were also too complicated for me to follow, so I rather quickly shut down. Hospital staff continued to give me anti nausea pills, but I dispatched them quickly. Also, I could not drink water. This was not an immediate problem because I was getting a giant drink from the hydration bottle on my tower, but once I came home, it was more problematic.

In retrospect, I would be more emphatic about my distress. As happened back when I was learning that my definition of “uncomfortable” could also mean “pain,” I was caught in one of those personal limitations where I relied on my old strategies. How do I get through a stomach flu or food poisoning? Just stay in bed and rest. My old examples failed me. This time I was in the middle of a major round of chemotherapy.

My entrance to the hospital was full of anticipation and hope; my exit was a blur of exhaustion. I felt like oatmeal. But my hour of delivery from Mt Parnassus did happen, and on Tuesday evening almost five full days from entry time, my dear Eileen arrived, hailed a cab and we took the ride down the hill to my home. “Well,” Eileen said with a ring of admiration, “You’ve gotten through your first course of chemo!”
November 7th to 9th, 2008: Minutes before heading to the hospital, I open my mail of the day and there is a short card from my Mom wishing me well. “I’m sure,” she says, “that UCSF Mt. Parnassus will take good care of you this time, just like they did when you had the illness on your head 60 years ago.” How odd. The only two times I have ever been to UCSF were for life-threatening procedures and they happened some 60 years apart. Wondering what that might mean, I am comforted to remember that the first time, I sailed out with a cure that has lasted for a very long time. May it be so again.

It was easy to check in to UCSF Mt. Parnassus Long Hospital 11th floor. My first bonding experience was with my nurse Dolores. She has the great fortune of looking quite a bit like Michelle Obama. Wanting to connect, I asked her if she was happy about the election. She looked at me, smiled and said, “Well, I just moved to San Francisco, and I’m from Atlanta. So on Monday I flew to Atlanta to vote on Tuesday, then I flew back to San Francisco on Tuesday for my afternoon shift here at the hospital. I surely did not want to miss voting.” I told her that her effort was a heroic act. Modestly, she agreed, “The whole day was about heroic stuff.” Then we were giddy with sharing bits of the Acceptance Speech in Chicago and stories from around the world. Dolores really grounded me onto the hospital floor.

Chemo doesn’t start right away. Thursday night I was fitted with hydration infusions and basically pumped full of water until the chemo started on Friday afternoon. Of the chemos, Doxoyrubicin infuses for 21 hours nonstop. That startled me. I thought that the timing would be more restrained, but not so. The three 21 hour cycles of Doxo stretched out the hospital stay. Ifosfamide infuses for a three hour cycle. In addition, there’s an infusion solution that protects the lining of the bladder. Seems that Doxo can strip off the inner layer of bladder cells; definitely a bad thing. When you see my fully equipped tower of chemo delivery, it looks like this: six feet into the air are the four gelatinous bags of fluid—the chemos, hydration water, bladder protection—connected to plastic cording attached to the pumps located mid-tower that monitor the fluid rate into my body. There are also sub-drip containers that moderate the fluid flows. Because of the complex number of drips that are going through all lines at all times, the tower has the pleasant effect of sounding like a gentle, insistent rainstorm that’s happening right outside the window.

Normally, I’m in bed and the tower is next to the bed with a power cord going into the wall. In order to become mobile, all I had to do was take out the power cord and start walking around. All the fluids feed into two separate needles which had been installed into my chest port. Inserting the needles was an unpleasant surprise. Of course I wanted to have the chemo lines installed and in the next minute a very thick gauge needle was pushed directly into my chest! I was told that the skin covering the port becomes much less tolerant over time. That was not the case the first time. And there was another needle to go. Point being, because of the needles, I remained connected to the tower through my time in the hospital.

Over the first two days, I settled into my hospital routine. I met the complex layers of staff: nurses, medical interns, oncology doctors, medical doctors sometimes in groups, usually solo. I avoided television but found the patient services group that supplies DVDs. Most important, I finished reading Bone, and celebrated with Marion Woodman as she becomes cancer free and also discovers the archetypal resolution of her multiple desires to fly free and to live on the earth. Her solution at the end of the book is dance: airborne motion that springs from the ground and returns to the ground.

Throughout this time, when someone new came into the room for more than a few seconds, I would show them my invocation to the chemo. When I hand it over I am mostly in my adult sharing a technique and explaining about the group that is a chorus welcoming the chemo. But also I sense my child, about four or five, handing over something he’s created and wanting approval. Of course my child is in the hospital with me. When ever I feel him, I let him know that he’s protected and safe, that he can go home and play with his toys whenever he wants to. I eat well, I sleep well, I am off to a very good start.

Thursday, November 6, 2008

November 6th, 2008: Went to work this morning and jammed to finish the first draft of my current project. Once done, I came home and headed for bed. Then the phone rang and I picked up the long-awaited call from the hospital. “We have a bed for you!” Music, music. After hosting this cancer for years, giving it the best food I could find, nurturing it with no interruptions to growth, finally, I am going to start assaulting the “Haughty Foe.” That’s what Lorenzo calls my cancer: The Haughty Foe. Well, Haughty Foe, “Get outta here. Go.”

I doubt if I will have any treatments this evening, but tomorrow, the chemo will start. If you would all go to the November 3rd blog entry and take a minute to read or better yet, recite out loud, my invocation welcoming the chemical assault, I would truly appreciate this effort from you. I’ll be getting the chemo on Friday, Saturday, Sunday, Monday and Tuesday. If you read the invocation on any or all of those days, you will be so right next to me. That’s what I’ll be doing as well. Reading the invocation and starting on the path to accelerated healing. Thank you all for being a part of my path.

Tuesday, November 4, 2008

November 4th, 2008: My new chest port was installed easily this morning, however there was no available bed for me to stay in the hospital for a five day chemo course. As I was about to be sedated, the nurse asked, “So, who is driving you home?” “Uhhh,” the taxi driver.” I replied. “Oh, no, no, no. We can’t let a sedated person leave the hospital unattended. You’ll have to call a friend to take you home.” Sigh. I wish they had told me this ahead of time. But, my hero Gaetano answered the phone and cheerfully agreed to pick me up. Thank you, Gaetano. Now, I’m back in the comfort of my apartment on a bright day. Sunlight bounces off the big pieces of glass in the front window, and the grass in the park across the street shines with a juicy green rejuvenated by the weekend rains. My home heals me.

To date, I haven’t done anything specific to organize my support group for when I come out of the hospital. I’m not sure what I’ll need at this point, so how to schedule someone when the dates and tasks are still unclear? Please, stay tuned. There will be ways to help, even if it means visiting over a cup of tea which is what happened after the hip replacement. Hey, nothing wrong with visiting over a cup of tea with any of you.

This blog started out as a way to automate information delivery to many people. The content was matter-of-fact medical and informational. “I visited doctor X on this day and the outcome Y.” However, my visualizations have changed this content because they reach way into my psyche. I’m glad for the wider and deeper access to myself, and it’s a surprise and an honor to share it with all of you. I’ve never had this way of expressing myself before. All my life I’ve had far-out experiences. Sometimes I talk about them and just as often they don’t come up in conversation. Now, because of so many issues that constellate around the questions—What is this cancer? How will I heal?—there’s this opportunity to be more holistic in my approach. I’m reminded of talking with Sista Monica Parker back on September 30th, when she thought about her own successful struggle with cancer and concluded, “It was a blessing.”
November 3rd, 2008: Tomorrow I go to the hospital to have my chest port installed. There’s a chance that a bed will be available so that I can stay for five days and have my first chemo session. But, given that the 11th floor is full with a waiting list and the beds on the 14th floor are also full, it may be a few days before I begin my treatments. If I come home tomorrow after the port install, I’ll let you know on this very site.

One of my deep beliefs is that chemo will be effective for me. I have been visualizing it coming into my body from the drip line, entering my bloodstream and then dispersing through all my fluid systems into the cells of my physical self. Since chemo is such a drastic variance from the care I take to avoid toxins, I want to honor that shift of habit. I welcome the chemo and support its task. And I don’t want to do this alone. I’ve drafted a prayer that I’ll recite during the time of my treatments. I ask the readers of this blog to join me in reciting this invocation while I am in treatment. Your chorus of voices will multiply this welcome. You can recite it by reading to yourself or speak it out loud. When you read it, imagine me receiving the incoming chemo. The resonance you create will make a difference. I feel that resonance already in your phone calls and email messages telling me of the love and care you are sending. You can do this any time of day or night over the next few days.
So, all together now:

I welcome two elixirs into my body.
They swim into my body’s river systems.
They insinuate through cell walls.
They’ve been chosen for their willingness to kill.
They are poisons with a longer purpose.
My body will hold their heat.
They will burn my cancer into the bone.
My body understands this.
Each atom, cell and organ knows its destiny.
The mix of health and contagion will end.
Welcome Ifosfamide
Welcome Doxorubicin
Welcome to my body.
Find your way through me.
You have been invited.
Finally, you are here.

Sunday, November 2, 2008

November 2nd, 2008: I’ve spent a lot of the day in bed, reading and napping. Not a lot of energy, but not exhausted either. Feeling quiet and inward; pain is under control. I’ve been reading Marion Woodman’s Bone, a journal of her plague year when she was treated for advanced uterine cancer. Given Woodman’s attention to her body, her dreams, the physical world around her and her various inner persons who are wild, terrified, free, maternal, etc. and with her deep experience as a Jungian analyst, the book is a stunner: full of insights and a great model of how to honor the multiple parts of the psyche.

Then, late afternoon, I took the following trip to my healing spot. My pain medication blurs clear visualization. To focus, I’ve been listening to a CD where my friend, Bob Kudrna plays Tibetan crystal bowls. Nice hums to the music. Today, I started by cleaning out my chakras, running energy through my body, grounding myself, doing a bit of repair on my etheric body. Then, I traveled to the magic redwood tree and went through its trunk to my healing center. My soak in the turquoise lined tub was brief, but for a long time, I simply lay on the soft marble stone, listening to sounds of the natural world, and watching the sky. I felt open and offered to the world. “Here I am,” I could feel my body say. “We’re all together in the same world.”

I also began to sense energy on the other side of the gate, an urgency to get into my healing space. After the usual question “Are you here to help heal me?” and the affirmative, the gate opened and a man leapt into the garden wearing a huge carved African face. I’d say the mask was two feet or longer and clearly made of heavy wood with eyes so wide they were concentric circles. Long gouges filled with white and red pigment stretched in V shape across the face. I was startled. It was like the masks in Picasso’s Le Demoiselles d’Avignon: aggressive, primitive, confrontive. “How does he wear that heavy thing?” I wondered. But then, the shaman came over and brushed his hands over my abdomen and pelvis, nodding the weighty mask over my body. Plunging his hands into my pelvis, he extracted the tumor, quickly and without a moment of pain. Both of us watched as he raised the tumor high into the air over my body. What happened next will be with me for the rest of my life. The tumor let out a scream of rage and fury. “Aughhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!” The sound was so unrestrained that it took me a while to realize that this was my voice, but as I’ve never let it out. This was the voice of my self from four to seven when I was being molested by my father, “Don’t tooooouch me!” “Go awaaaaaay!!” This was the cry that I never cried. Instead we froze in our family roles: father molesting me on whim, mother denying everything, me leaving my body a lot while knowing that if I told my mother about being molested she would confide this to my Dad. I screamed as any child would, but the sound did not come out of me…until today in my healing garden. The cry became louder and deeper and wider, truly deafening and oh, the pain in that voice. The masked healer would not put the tumor down, and the cry increased until I couldn’t stay separated from it. Finally, I became a part of the cry and this tableau endured—me on the marble table, tumor raised high over me by a figure masked with bulging eyes—for a very long time. And then, with a quick drop of the arms, the shaman returned the tumor to my pelvis, turned the mask full toward me and leapt backward out of the garden.
November 1st 2008: It’s been a wonderfully wet day with thrashing showers and a dark light that intensifies the colors in the park across from my apartment. A day of reflection and balancing—let’s see, what needs attention? I believe that healing comes from many directions. But when I thought of myself as healthy, my maintenance regimens were much more low key; three days a week at the gym; healthy food, lots of opera and ballet, voila! Health! It’s a complex project to manage a cancer diagnosis. There has been a huge amount to learn about self-care in the past few weeks. Change of diet has been a big shift, and I’m happy to say that I’ve found that most fresh food is tasty on my palate. But what’s a good diet that supports the rigors of chemo? Need to ask a nutritionist. And what about body work? My friend Terry Conner has been visiting twice a week and doing powerful, insight-full Reiki sessions. But is this enough? It’s been hard to stay in my body. I assume this is basic terror management. Cancer diagnosis? Leave the body and don’t come back until it’s over. Well, that really misses the point.

There are so many parts of the self that need attention and deserve attention. Under all of these care systems are the deeper questions. Am I bringing my full self to this effort? How do I gather my energies? Also, it’s taken a while for me to get close to the core issues: do I want to live or die? If live, why? What do I hold with such passion that I am willing to fight to live for it? And how is this time different than the last time I confronted death some sixty years ago? Briefly, here’s that story….

A month after I was born in 1946, my older sister was diagnosed with acute leukemia and she died very shortly afterward. My parents were devastated, really flattened. After many months of living with two inconsolable adults, my loneliness reached such a pitch that I devised a plan. I would get really ill and if my parents rallied, then their attention and love would make it worthwhile to live. If not, then I would die and, having recently come from the other side, that held no fears. I had to do something to break the cycle of neglect that was literally killing me. The next thing I knew, I had a serious and ugly growth on my forehead. My parents freaked, immediately found medical care and from that time on, I felt like we had the connections of a family. All of this memory came forth effortlessly late one morning a some years ago when a Swiss body worker gently cupped his hand under the back of my knee. That, apparently, is where the memory resided. And when he touched that place, the whole story returned intact and complete.

Well, not exactly complete, because here I am sixty years later with cancer. I’m not perishing from loneliness. But something, clearly, has gone out of balance, and I believe the cancer is a way of expressing my disunity, my dis-ease. I have to say, I have no interest in the question, “Why me?” The answer to that is, “Because.” But I am very interested in the question, “Why?” Why do I have cancer now? Why have I been growing this tumor without knowing it for the past two years, at least? What’s that about and what can I do to re-balance myself into health?