Sunday, July 5, 2009
The love in my life
When I first announced that I had been diagnosed with bladder cancer I expected the usual flurry of "get wells" and "best wishes" all the usual Hallmark greeting card expressions that I'll admit I've often relied on over the years. After all, what do we say to someone who is contemplating a possibly imminent death sentence? "Well, good luck with that"? The response in my case was something I found quite surprising. Over and over, I've heard: "I love you."
Thank you all from the bottom of my heart.
Wednesday, July 8, 2009
The hundred foot pole
Several kind people have commented to me that my Zen training must have prepared me well for what I'm facing. That notion is lovely but I have a sense that if I start believing it, my suffering will become greater. I fully expect that I will fail to keep my sense of self as victim in conscious perspective at all times. In those moments, I'll hopefully want to avoid the gaining idea that somehow I didn't train hard enough, or I wasn't a good enough Zen student. Between now and Monday I will focus on doing what's right in front of me. Right now that doesn't include much bodily pain. When I wake up from surgery, I expect the pain will provide a powerful focus for my mind just as it does during extended meditation periods.
Sometimes I think we are like the guy who falls off the top of the 10 story building and about half way down the people on the fifth floor hear him exclaim: So far, so good! I've spent a good part of my life ignoring the ground rushing up to meet me. Can't ignore it anymore. I've jumped off the top of the hundred foot pole. Nothing to do but trust the universe completely. Nothing to do but live this life I've been given.
Friday, July 10, 2009
Hurry up, wait
Just when I think I can actually see through the illusion of personal power, something really surprising comes along and forces me to see how much I was relying on my plans and strategies to deal cope with life.
I had spent the last five days getting myself ready for the projected ordeal of major surgery/five days in the hospital/one month recovery at home. I was all set. Clients taken care of. Had a small going away party set up for Sunday night. Had convinced myself that I was strong and would be able to live through this transition, maybe even realize its transformative potential. Thank you Mara. Your comforting delusion actually worked for a while. I was ready.
Then Dr. Williamson called to tell me the surgery has to be put off for a week. The fellow surgeon who was to help him perform the operation had a death in the family and had to postpone. It felt so weird to notice my disappointment at not going into the hospital three days from now. To see my shock and dismay that now that I had so carefully prepared myself, I might have to hold onto that preparation for another 10 days. Somehow the idea of "psyching" myself for that long seems like too much work, now. And kind of pointless. This next week, I'm recommitting to letting go of plans and ideas that will save me. I'm recommitting to just supporting Life completely. Moment by moment. Thy will be done.
Monday, July 13, 2009
This too, is for your benefit
When my surgery was rescheduled I felt a sense of loss. Loss of time. Loss of opportunity. Loss of preparedness. And yet, there were a number of things that came up around the rescheduling that could be seen as gain. Thanks to the heroic efforts of Randy Eisenman and his powerful network of friends, I was able to get shortlisted for a second opinion at MD Anderson.
Right now, I'm thinking that in this loss there is gain. That all of this is somehow for my benefit and the benefit of those whose respond. If not for this disease, I would not have felt the outpouring of love and affection from so many people. My grandson Mac would not have been introduced to so many wonderful people offering him their wisdom. I would not have been able to reconnect with my good friend and colleague Cindy Wigglesworth or some old friends of ours in the Woodlands this week. I would not have found the energy to complete the first draft of our book.
Saturday, July 18, 2009
Change of plan, change of mind
Turns out my second opinion was worse than the first. And yet my spirits are high, my equanimity generally restored. Thursday I met with Dr. John Ward III at MD Anderson. He was terrific. Clear, Cogent, Cognitively brilliant, and Compassionate. I got to experience all the wonderful "C" words after almost three weeks of dealing with the dreaded one. He explained to me that my tumor had micro-pappillary (sp?) features meaning it had very likely sent free floating cancer cells throughout my body where they will eventually hook-up with a million of their buddies and grow another cancer somewhere. He told me that MDA has a relatively new method of dealing with this situation which is to do two months of intensive chemo first. Then take the bladder and build me a new one. Then watch me closely for signs of new cancers. This was, at first, very disorienting and shocking. Especially when I learned that the 5 year survival rate for this is 50%. Yet as direct and confident as Dr Ward was when he told me his opinion, he was equally direct and confident when he said "This thing is beatable."
I have an all-star team, a best of the best group of physicians who seem very interested in helping me beat this thing. My spirits have been high all day. I did a half day silent retreat this morning and my meditations were still and deep. I met with two different Zen teachers this morning in private interview and actually found myself, authentically in-the-moment describing my situation to one of them as "kind of cool."
It seems that in addition to changing my plans, I've changed my mind:
I am no longer "dying of cancer" I'm "living with cancer." My dying will only take a moment. It will be that moment when I expel my last breath. Everything else before that is living. I intend to do it wholeheartedly.
PS Good real time Zen joke: I'm due to be ordained as a priest this year. As a traditional part of the ceremony a monk's head is shaved except for a small circular patch called a "shira" That last patch is shaved off as the defining moment of the ceremony. Well, my crazy immune system has prevented me from growing hair for the past 15 years and my teacher was trying to figure out how to alter the ceremony as a work-around. Not much came to mind. Now, there's a good chance that my chemo compromised immune system will actually allow me to grow hair in time for the ceremony. When I pointed out that at the very least this situation had "solved the shira problem" my teacher burst out in hearty laughter. In loss there is gain lol.
Monday, July 20, 2009
50/50 now 60/40
Met with my Oncologist today Dr Arlene Sierfker-Radtke.
I should be able to work, to meet clients around my chemo schedule and the surgery schedule. I'll probably regain my high spirits again after a few nights good sleep. My equanimity is pretty good right now. Nothing bad is happening in this moment. In fact, just reaching out to all of you and feeling you reach back is very sustaining.
Saw a t-shirt at Zen Center one day that helped me put all this in perspective. It said: Eat right. Exercise. Meditate. Still die.
Saturday, July 25, 2009
I've just received my first round of four rounds of chemo and among the post infusion instructions I've received are to avoid handshakes and hugs as my T-cells will be low and I'll be very susceptible to infection. No problem! You all can just expect to see me "gassho" when we meet. I kind of like that idea. Mainstreaming "gassho" could change our whole society (lol)
My first gassho (bow of gratitude) today is for everyone at MD Anderson who worked so flawlessly to help me and Paula get through this first round of chemo.
I had 31 continuous hours of chemicals administered into a blood source near my heart through a "pick line" a catheter that starts near my elbow and follows a vein into my chest. The pick line will be with me for the duration of the chemo. I am Borg. Resistance is futile.
The chemo ended at 4 pm Thursday. We stayed over with Cindy Wigglesworth (God bless you Cindy!) and I drove home Friday. Yes, I drove. I'm feeling fine so far. Spirits are still high. And something has shifted. I've got a brave new confident attitude about this thing. I used to wake up 3-4 times a night in a sweat with the thoughts of premature death. Paula would hold me until they passed. Last night she got an uninterrupted 8 hours of sleep. I woke up 3 times but each time my thoughts were powerful and positive. I'm going to beat this thing.
Tuesday, July 28, 2009
The light of peace
This morning, about 10:15, a business meeting I was expecting to attend didn't happen, and I felt a need to go rest. I went to our room and lay down, gently closing my eyes but not sleeping. Within a few moments I experienced what I can only describe as a kind of healing light energy flowing not so much over me or around me or through me but as me. I had no sense of my "self" being separate from this light energy, or that it was "working on me." I did not feel bathed in it, warmed by it or infused with it. The experience was more like I was the light. Eyes open or eyes closed, everything appeared bright and exceptionally clear. Visual contrasts were sharp but not unpleasant. As if all of a sudden, I had perfect vision--even with my glasses off.
More remarkable than the physical manifestations of this experience though were the sentient ones. I felt completely at ease, comfortable, safe, non-anxious--neither "grounded" nor "floating" but just fully, fully present. I felt at peace. I felt not so much loved as love itself. I remained in this state for an hour and a half. When I arose to attend my next meeting, there was no reluctance. It was simply time to move. As I stood up, I felt a knowing in my body that my healing has begun.
It is now over nine hours later. I haven't slowed down or needed to rest since. I've had two extensive client meetings, driven 30 miles or so, had dinner with friends and I'm still going strong. I am not experiencing nausea--my appetite is robust. I'm not feeling tired---I feel really really energized. I don't feel sick at all. I feel very,very healthy. I feel Alive.
Like all states the experience this morning is temporary. I may very well feel terrible tomorrow. But I don't expect to. However, I now have a clear sense that while the sense of health I currently feel may come and go, rise and fall, the Reality underlying my experience is constant, infinite, vast and lacking nothing.
Monday, August 3, 2009
Met with Dr Siefker today. She has a real presence, a directness and concentrated attention that I really appreciate. I even invited her to check out my "woo-woo" posts and she said that research shows that people with community support, family support, faith, and a positive attitude tend to have better outcomes. I think her jury is still out on healing vision while in a deep meditative state :-)
In any event, those experiences of "being Light" continue. Some have become quite animated. I'm resisting making too much meaning of it all. Just grateful that when it happens I come away refreshed, renewed and in high spirits.
Today, I got to meet with the team from work by teleconference. I got to feel the kind of caring and support that Dr Siefker spoke of. Thank so much!
Wednesday, August 5, 2009
I'm writing this post in order to clarify something that has been a bit vague and unintegrated for me. So please don't take this as me teaching anyone but myself.
"First there is a mountain, then no mountain, then there is." I am coming to understand this old zen saying as a description of three stages of intimacy. Three stages that give rise to three levels or perhaps states of a decreasing sense of separation between our felt sense of "self" and our felt sense of "other."
This observation arose for me during my stay this week for the second round of chemo at MDA. My infusions began at 10:30 pm. The night nurse who greeted me seemed perhaps not as experienced or confident as the other nurses who have tended to me. She got a bit defensive when I reminded her to write the schedule of my doses on the schedule board. She got more irritated when I pointed out that I believed she had scheduled the anti-nausea medicine too early. Instead of checking, she went ahead with what she thought was right. We saw each other as "other." We divided the our worlds into two. Nurse and patient. The one in charge. The one not in charge. Me here. Mountain there.
15 hours later it was time to take a four hour dose of Cisblatine--the chemo that is primarily responsible for causing severe nausea. By now the anti-nausea dose I had been given had worn off and I was faced with the prospect of receiving only post infusion remedies for sickness instead of prophylactically addressing the issue. I explained my problem to my new nurse and her first response was "I'm sorry. You're right, we should have waited until now. But we can't really re-administer the medicine." In that moment as our eyes met and she saw the anxiety and fear in my face, something softened. Some line between us blurred. "Well, she said, "I suppose we could give you one of the two you were supposed to receive because it will be out of your system by now." Call it empathy, call it nurturing, I call it intimacy. She really understood, could put herself in my place. We were not mountains opposing each other. Those mountains were gone for the time and in their place was a state experience of not being separate.
Which leads me to the third stage of intimacy where mountains are mountains again, but not seen in the same way. I have experienced this stage as repeated states of non-dual consciousness. Shikantaza, my meditation practice, has afforded me sometimes prolonged glimpses of a greater Unity. Of "things as they is" as Suzuki Roshi is reported to have said. In this state/stage body and mind drop away anything added. No stories are necessary. Genpo Roshi calls this "Big Mind/Big Heart." Recently I've experienced it another way as "being the Light" This stage transcends and includes the previous two. So Mountains are Mountains again--I am aware of the sense of separation and yet I know simultaneously at another level that there are no boundaries save the ones my mind creates. In this way compassion arises.
Wednesday,September 16, 2009
The threads that connect us
I've gotten through my fourth and final round of chemo and I have until October 26th to recover. That's the day of my surgery. Along the way, I've found out that I don't have cancer in growing my bones and the most recent biopsy showed no lymphatic invasion. But I still have the microscopic cancer cells that are probably circulating in my system to worry about. Hopefully the chemo got 'em. On top of that relatively good news, I got some really good news.
I have a date set for my ordination as a Zen priest. December 12th at AZC in Austin. This is the culmination of 18 years of steady practice and working with a teacher. Prior to the date being set I was told to start sewing my priests robes. (actually I restarted for the third time in ten years :-)
This is an enormously complicated project. A piece of black cloth about the size of a bed sheet is measured and cut into 21 pieces. Those pieces are then pinned and sewn back together in a quilt like pattern requiring thousands of hand stitches--each put in with a chant. The success of each stitch is measured in millimeters. Stitches that don't meet the sewing teacher's approval are taken out and re-sewn. The robe is called an Okesa. To put this in perspective, my sewing teacher and I worked three hours this afternoon squaring the okesa and pinning the short side borders. Normally we allow a year for this whole project to be completed. In addition to the Okesa there is the Zagu a bowing cloth that while not large is very complicated to sew. Then there is the Rakasu a recreation of the Okesa scaled down to about 10"x12" and worn around the neck. Finally, the envelopes for each of these need to be cut and sewn.
When I began this project the Tempter of Delusion Mara came to me and told me I would become the next great Zen sewing artisan. That I would go from a guy who could barely thread a needle to a priest with full expertise in this arcane craft. Then the Buddha came along and gifted me with this cancer. (This too is for my benefit :-) and everything changed. Suddenly I my hands shook too badly, my body needed more and more rest, sewing time was replaced with hours and hours of infusions and trips to MDA. Most importantly I had to learn how to go from "the strong one" the "one who is there for others" to the vulnerable one. The one who needs help, who needs to be held and to accept compassion.
So along with the cancer, the Buddha also sent me Sangha--the Zen communities with whom I have practiced. One of our previous sewing teachers undertook to sew the Zagu. My wife Paula picked up the needle and began putting in lines. My current teacher allows me spend as much time watching and learning as actually sewing and pinning. My former teacher Dai En Bennage from Mount Equity in Pennsylvania and her group undertook the Rakasu---sewing it with thread left over from one of DaiEn's robes. So the threads that connect us became not just metaphorical but actual. The whole project will be done ahead of time.
I guess I'm just really sensitive right now but I well up every time I think of how all these people some of whom I haven't seen in almost a decade rallied to support me. And I reflect on how being "the strong one" is really just another defense put up by my ego. A defense that was long overdue to be torn down. I'm discovering the joy in vulnerability. The peace that comes with surrender. Reminds me of a sign in the AZC kitchen: "Barn's burnt down. Now I can see the moon."
Tuesday, January 12, 2010
Facing the brutal facts
I’m sorry it’s been so long since I’ve written, but I have some pretty bad news and I wanted to wait until after the holidays to tell you about it. On October 26 I had an operation to remove my bladder and build a new one using a piece of my bowel. It was a long, difficult, 9-1/2 hour procedure that required ten days at MD Anderson Cancer Center for recovery before I could be sent home.
The operation was a success and during the two weeks following the surgery I seemed to be getting stronger and was feeling much better. [But] suddenly, I got hit with a pulmonary embolism (PE). Blood clots in my legs broke lose, migrated to my lungs and left me unable to take even a single step without gasping for air. I was rushed by ambulance to South Austin Hospital, where I spent a week on blood thinners, just getting stabilized after this life threatening condition.
From there I was transferred to St. David’s Rehab Hospital, where the skill and determination of the doctors, nurses, Occupational and Physical Therapists (OT’s and PT’s) brought about a significant improvement in my condition. I was once again able to walk short distances with the help of my trusty walking stick. My appetite returned and I readied myself for a trip back to MD Anderson for what I thought would be additional chemotherapy.
Unfortunately, as I learned when I talked to my oncologist, my pathology report following the operation indicated a poor prognosis. Microscopic cancer cells were found in 37 of the 60 lymph nodes they removed. To make matters worse, the PE disqualified me from the clinical trial that I was enrolled in for a drug called Avastin, One of Avastin’s known side effects is that it can cause circulatory problems. My physician, citing her oath to do no harm, said she could no longer treat me with Avastin for fear of killing me. With that, my active treatment at MD Anderson ended.
The good news is that my first set of CT’s found no evidence of additional cancers, which both my oncologist and surgeon found somewhat surprising and encouraging. I am also looking into some alternative medical treatments. The bad news is that there’s a 90% chance the cancers will return and if they do, it is likely they will take my life.
I am now scheduled to return every eight weeks for scans to determine whether or not additional cancers have formed. Those are the brutal facts.
January 12, 2010
Paula and I just returned from a wonderful trip back to our hometowns in Pennsylvania to see friends and family during the holiday season. One of the friends we visited, Susan Herrick, was unaware of the severity of my condition and when I described it to her, she got teary. She came around to where I was sitting, took my hand in hers, and said, “I don’t want to say goodbye.”
I replied, “I’m not here to say goodbye. I’m just here to say hello.” And then something inspired me to sing, “I don’t know why you say goodbye. I say hello. Hello. Hello.”
It broke Susan’s mood. She jumped up, went to the piano and started picking out the tune. I am writing to you not to say goodbye but to say hello and to thank all of you for the wonderful love and support, the caring, the prayers, the cards, the calls, the e-mails and text messages. They kept me going through some very dark times.
I am actually feeling OK right now. What I am, mostly, is curious. How will this amazing story work out?”
Sunday, February 21, 2010
Three Kisses for Opa
For the past three weeks Paula and I have been traveling. First to attend an ILP graduation in Dallas. Then weather finally permitting, to Asheville NC to visit my children and grandchild as well as to introduce ourselves to the teachers at the Wind Horse Zendo in Asheville.
In September when I saw my Grandson, Mac, he was a baby. Suddenly, at 20 months, he's become a little boy. It took only a few minutes for him to start calling me Opa. One evening as his bed time approached, his mom and dad invited him to say goodnight to the people in the room with a kiss. When it was my turn, he looked at me with a beaming face, said "Opa!" and toddled over as fast as he could to plant one on my cheek.
The room erupted with laughter, applause and the requisite "oohs." Mac then made his way back across the room where his parents stood waiting to take him to his crib. As his Dad reached down for him, Mac suddenly did an about face and ran back to kiss me on the cheek again. More laughter and approval encouraged Mac to do it a third time, giggling all the way as he managed to milk a few more minutes before having to go to bed.
I love you all,
Saturday, February 27, 2010
Dead man walking???
Got the results of my scans on Thursday and the cancer is back. Three nodules in the intestines. My oncologist made it official. My cancer is now considered incurable. She gives me 4-6 months without treatment. 6-12 with chemo. You might think I'm depressed and anxious but I'm not. In fact my spirits remain strong. After meeting with the folks at MDA, I called Bill, my homeopathic consultant, who has a completely different script for me to follow. Bill's prediction is, that if I follow the regimen he's given me, within 4 months I'll see a reversal of the cancer growth and within another 4-5 months it will disappear. [H]is script is a lot better than the one from MDA. His story has a happier ending :-) So we are going to move to Asheville, NC to be close to family and to practice at the Wind Horse Zen Center. The next six months, I suppose, will write another chapter in this tale. Perhaps the last chapter, perhaps not. Either way is okay.
Meanwhile I'd like to share with you a quote from Zen teacher John Tarrant that I recently read on the Austin Zen Center discussion listserv. It struck me as particularly salient considering the certainty with which MDA predicts my imminent demise and the certainty with which Bill predicts my “Zen people talk about emptiness because when you awaken, the maps that hold your beliefs are suddenly gone. You also notice that new maps appear in the mind, even without encouragement from you. And as new maps appear, you can take them as provisional.
The Zen task is to open to the gates of the world beyond our prejudices. Like the Buddha, we can step away from everything we are certain about. I think this possibility is the best contribution we can make to healing the flaws in consciousness and helping the world. Unkindness comes out of certainty; when we throw out certainty, we have the bare reality of consciousness, and another name for that is love.”
Saturday, June 19, 2010
We Wuz Robbed!
The move to Asheville NC has been a blessing. We are living about 6 miles up the road from my grandson, 20 minutes from my daughter and a half mile from Windhorse Zen Center. Attached is the view from our deck. We eat most of our meals there.
Last thursday afternoon we were the subject of brazen daylight break-in. The thief stole both my Mac computers, a sound system, and all my RX meds. In loss there is gain however, so I'm composing this on a sexy new iMac purchased with insurance money.
July 21, 2010
Four weeks ago I was doing splendidly. Walking two miles a day. Regaining physical strength. Planning to change the world with a cure for cancer.
We plan; God laughs. And God has sent me a real knee-slapper.
According to the physicians who have read my latest CT Scan, I have 4-6 weeks left to live. I'm currently at 75% renal failure. I have a mass in my intestines that is blocking normal functioning. I've gained 25 pounds of excess "water weight" that has caused my legs and ankles to swell. My hospice doctor predicts another Pulmonary Embolism in my future. Hah, hah, woo-hoo. That's a good one, God.
So how shall I spend my days?
I think I'll put together a schedule and follow it completely. Meditation and breakfast at Windhorse Zen Community, correspondence and phone calls, lunch with loved ones, watching our new puppy crawl all over Rocky the Dharma Dog. Napping in the cool mountain air. Holding and being held by Paula. Life is good. I vow to enjoy every last moment by being as fully present as possible. … I'm not in pain--thanks to the hospice program--they have the best drugs and nobody seems worried about me becoming addicted.
That's enough for tonight. Know that I'll sleep well tonight. That I'm not afraid. And that I love you all.
Thursday, July 22, 2010
I probably won’t last the week
Sorry friends, The end is coming much sooner than predicted. I won't horrify you with the graphic details; let's just say none of my plumbing is operational. I tried and tried to find a remedy that would allow me to make a farewell tour---even ordered t-shirts :-) All to no avail. I now have 24 hour nursing care which provides a nice break for Paula. …
Over the past decade, especially, it has been my honor to serve you in a spirit of mutuality. I learned lot.
I love you all,
Thursday, July 22, 2010
Please feel free to call
If you would like a chance to say good-bye before I transition, please give me a call. If you get my voicemail, leave a message. I would like to spend as much time as possible in these remaining days communicating with my friends, colleagues and clients. I used to joke that I would die with my headset on. Who knows? Maybe that will come true. LoL
July 27, 2010
It was like this
As his final entry, Phil posts the the poem by Jane Hirshfield, “It was Like This: You Were Happy.” We have excerpted the closing lines:
Your story was this: you were happy, then you were sad,
you slept, you awakened.
Sometimes you ate roasted chestnuts, sometimes persimmons.
About Phil Gable