"I love you." "I know."

I remember the times in my youthful romantic relationships, the ones full of limerence and lust, when I would wait for the right moment to look at her to say "I love you" for the first time. Then wait anxiously for the response I so longed to hear: "I love you, too." I remember the devastating feeling that washed over me when the response was: "I know." I had hung all my feelings, hopes and dreams out there only to be crushed by a polite acknowledgment that committed to nothing.

I remember the times in my middle years in my long term covenanted relationships, the ones sometimes frayed, and bruised and threatening to come undone, when I would look at her and and say "I love you." and then anxiously await the accustomed response, the one we had practiced for years: "I love you too." I remember the sadness and sense of loss when the response was: "I know." I had made a peace offering, given a reminder of our history together and my hopes for our future, only to be rebuffed by a vague expression that committed nothing.

Over the past six weeks as Paula and I have plunged headlong into this medical nightmare, there have been many occasions when we have comforted one another with our habituated somewhat casual responses: "I love you. I love you too." But there have also been times when "I love you." has been met with "I know." Only now, in my mature years and probably more mature love, "I know" has taken on a whole new and profound meaning. It is an affirmation of commitment, a recognition of 15 beautiful years plus six weeks of hell, spent serving each other without asking anything in return. "I know." means I've somehow succeeded in cherishing and supporting another in the way they want to be loved.

I've been signing these blogs with "I love you all." Tonight, I want to say to all of you who have verbally and implicitly expressed your love and support for me---tonight I want to say:

"I know."

Intimacy

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 completely. Life is just life without 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. I am able to feel compassion for all who do not have life threatening cancer because I can see clearly that we are all in free fall. I can have compassion for the cancer itself which is not separate from me.

My learning from this is two-fold: First we can and do occupy all three state/stages everyday to one degree or another. They are in a sense not really separate either. That's an abstract learning. The more practical learning is that these three stages correspond roughly to certain dynamics of interpersonal relationships.

For example: Sympathy/Empathy/Compassion.

Also: "I treat you the way you the way I think is right" vs. "I treat you the way I would want to be treated." vs "I treat you the way you want to be treated."

The subject matter is explored thoroughly in the book Paula and I are publishing: The Source: A Journal of Mindful Relationship. (First drafts available upon request)

I love you all,

phil

Confidence

Getting ready for round 2 of the chemo. (Cue the ring card girl :-) I tolerated the first round quite well. I feel great. Energized, focused and upbeat. Met with Dr Siefker today. Came away feeling really confident. I got a clear sense from her manner and forthrightness that she expects to win. 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!

I love you all,

The light of peace

Fair warning:

For those of you who have an allergic reaction to anything you might deem "woo-woo" or "New Age" I suggest that you skip this post. And, to be candid, if I hadn't personally experienced what I did this morning, and I were a follower of this blog instead of its originator, I fully expect I would be heeding this preamble myself and finding something far more valuable to do with my time--like cleaning the fish tanks. Yet, when I undertook to begin these entries, I vowed that I would report honestly and directly what I was experiencing and then offer some reflection.

So here goes:

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.

As I re-read what I've just written, I expect that many are wondering what on earth I am reporting. I agree. It defies rationale, explanation. Invites skepticism. And some small part of me stands right there with the skeptics saying "Yeah right." And yet my experience was real. The aftermath fully observable by friends, family and clients.

For now, I'm going to say that I experienced something like "Big MInd/Big Heart" but in a very expanded, profound way. Whatever it was, its enough.

And it's now available to me.

I love you all,

Gassho

In Zen practice, we have a way of placing our hands in a prayerful position called "gassho" and then bowing from the waist. This gesture is used primarily to show gratitude or respect but is rather ubiquitous and can also mean anything from "pardon me" to "pass the salt." During silent retreats we gassho to one another as a means of greeting.

I've just received my first round of fours 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.

I've scheduled calls with all my clients for next week and am really looking forward to getting back to what fills my life with so much purpose and meaning.

Bring it on Life! Let me see what you got.

Love you all,

phil

50/50 now 60/40

Today my odds got better but the scenario got scarier. And then, yet another possibility opened up. Met with my Oncologist today Dr Arlene Sierfker-Radtke. Wow. Another straight shooter who let me know in no uncertain terms that I'm dealing with a very serious, very nasty form of cancer. I'm looking at the following scenario: 4 rounds of chemo in two months with the last one taking place on August 31st. Then a six week wait until I'm well enough to have the bladder/prostate surgery. After the surgery they will do another biopsy looking for even microscopic cancer cells. If they find them--and here's where the odds went up in my favor from an earlier 50/50 to 60/40--then the cancer is considered incurable. Historically, within 18 months new cancers will appear in random places and that will be all he wrote.

If the chemo gets what's there now--all of it--then they scan me monthly for 18 months to see if any cancers appear. If none appear, I go up to 80/20. If I get five years out, I'm considered cured. Okay that's the scary part. I can look forward to a day in October when I'll awake in the recovery room with or without a more or less imminent death sentence. Except....

Dr Arlene is running a clinical trial for an FDA approved (for other cancers) drug called Avastin. She has had 27 patients in this trial for about two years, I think. I signed on. If I can do anything to help others who have this condition then I feel very strongly about doing it.

So I was talking with the nurse who is managing the trial for the drug company who is providing Avastin. She told me that if I get bad news after the surgery she can offer me the option of continuing with the Avastin on a monthly basis. It does not have the deleterious side effects of other chemos. Essentially once a month I go to MDA for an overnight visit. She told me that three people had been offered the option. Two turned it down, preferring to take their chances. However, one person, a 70 year old woman with my diagnosis had accepted the option and is still tumor free after a year, feels great and is living a vibrant life.

That's my story so far. A little more apprehension today than yesterday. But also a lot more clarity. 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.

I'm okay. I'm okay with this. And I love you all.

Phil

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." He then left the room for about fifteen minutes and when he came back he told me that he had gotten me an appointment with Dr Arlene Silve-Ratke who he described as one of the world's most highly regarded experts in treating exactly the kind of cancer I have. When I asked about a physical/cardio regime to rebuild and sustain my body after chemo and surgery he said that I could consult with one of the physicians who was on Lance Armstrong's team. Shortly after that Randy Eisenman emailed the name of his cousin who works as a dietician at MDA. In just a few amazing hours I went from uncertainty and fear to having confidence, clarity and renewed courage. More good "C" words.

Suddenly 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.

I am no longer afraid of the ravages this disease and its treatment will inflict on my body. I will treat them as the necessary conditions for transformation. I'm going to research what Lance Armstrong did and use that as my model.

To the best of my intentions, I will no longer allow these circumstances to pull me into a "self-centered" way of approaching life. Being other-centered makes life work for me. My relationships with my wife, my friends, my family, my clients, the work that we do together sustains me, fulfills me, keeps me sane. That doesn't mean I won't indulge in self care. When I'm tired I'll rest. When its time to exercise and eat right, I'll do that. Whole-heartedly. But the first day after chemo that I can take calls, I'll want to be on the phone. Fully present.

Part of this self-authoring move that I'm attempting, this shift from victim to creator is the "gift for Mac" entry earlier in this series. I really love that little guy. And now that the odds are about even that I'll see him graduate kindergarten, my project to collect your wisdom for him is of even greater priority. Please post whatever you can, whenever you are so moved.

I love you all,

Phil

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.

PPS: I feel such incredible gratitude for Randy Eisenman, his family and their friends who went to bat to get me into MDA. I spent about fifteen totally choked up minutes trying to express my sentiments to Randy on Friday. I told him he had probably added years to my life. He said "that's okay, you've added a lot of life to my years." Sweet.