I've got cancer, what's next?

Again, to be clear, these posts are mostly regarding where I was at 15 years ago when I was first diagnosed with cancer. I've been cancer free since 1999. I wanted to share my journal, and my thoughts of my cancer odyssey to benefit others or for the interest of others, whatever. So, to continue.

At this point in my life the reality of being diagnosed with throat cancer is sinking in. A lot of stuff coming up, brewing consciously and subconsciously. Big changes for me all around, not only with the cancer, and with the treatments for cancer, but also major aspects of my day such as relationship, job, personal life that shows up in so many ways. 

I’m seeing several doctors. I have three main specialists on my team – my ENT (Ear-Nose-Throat) doctor, my oncologist (the one that deals with overall treatment, especially chemo) and my radiologist. They each have their own personal perspective. I’m having conversations about my cancer and about treatment. As of yet, I haven’t settled in on what treatment I’m going to do.

The three specialists are part of a team and they are evaluating what the best treatment is for my situation. The doctors speak of a “tumor board” that meets once a week to evaluate, perhaps debate and decide the best treatment. I’ve personally met with the doctors, have asked questions and have presented some of my views. I try to keep up on what is going on.

Here’s where it gets very interesting. Different doctors have seen different ways of treatment. One says we do surgery and radiation. Another chemo, surgery and radiation. A third possibility – radiation and chemo. Maybe another possibility of just chemo and surgery. All the Western medical approach. It’s interesting to me that there is no definitive course of treatment as of yet. Each doctor has his own particular perspective, and these perspectives differ. I think about this. What hits me is that these treatments for throat cancer all have major effects, it’s not just like taking a course of antibiotics or setting a broken leg, these treatments are very potent and have big time consequences.


Wednesday May 13, 1998
Not doing too well this morning. For sure I’m confronted with my human limitations. One major fears are that half my throat is going to be cut out or some other such severe physical trauma. Gotta give that up and I can. 
Another fear is that I’m losing touch with my “work”. I put a lot of time in over the years to get to the point where I’m at with my creative expressions. This cancer situation is just too much. I don’t feel as though I can balance it. But I’m dependent on income.

Just ordered some books from Amazon. Feel a little guilty for having spent the money. But they were books I’ve wanted. Don’t know where I’m gonna be anywhere. I got some books for inspiration and intelligence increase.

On my way to Pottstown to meet with two oncologists. I guess I get more information. I guess I get clearer on the steps for me to take. It’s hard for me to see options since my partner told me that she didn’t feel moved to stay with me the other day. I felt my support pulled away and felt confronted with a whole range of options. 
The important thing for me to remember in this is that the clarity comes in making the steps. I’ll know what to do when the time comes or I’ll have a clearer set of choices and options. This is the process of life, of being present in a body, of having the 3 dimensional circumstance to work with. 

The other thing for me is my fear of making the wrong choice and this wrong choice having major consequences. I sure don’t want to give myself up into the hands of medical incompetence. I can only do the best I can with choice. An important point to remember here is something that Ladybear said – the choices are presented as they come up. Really, there are no accidents in this. I don’t know whether this idea of “no accidents” is entirely true, but I think there are definite synchronicities and intelligences at play. These are kind of behind the scenes and not always apparent.
It’s up to me to make the choices as I can. It’s up to me to educate myself, to inform myself, to try to understand and then to let go to the process, accept the process and decide from a place of intuition.

Casteneda speaks of controlled folly. It’s all very dream-like, yet it’s not only just a dream, what I do has real consequences.
Last night the idea of just packing it in and going to New Jersey to work for my dad again presented itself. And this idea or image has presented itself to me over the years at various junctures. I don’t know if it is such a good idea, because there is another valid perspective that my partner shared with me. This is that we would just get sucked into the situation as it is. The co-dependence, the limitations that each of us have. I know this has been one of the fears in my life. It’s less of a fear because I’ve developed strength on my own. But with this situation I don’t really know, I don’t know what will be, I don’t know what will be best. From here, I can only take things one step at a time. A great challenge, a great adventure. 

Once again in my life, myth shows up to explain what is happening in the form of mythic image. In this particular sequence we have the old fairy tale image, the image of the witch coming up from behind while I throw the seeds over my shoulder containing great forests to impede her progress. In this particular image however, the witch is not necessarily a bad thing. The witch appears as a threat, however here what she represents is great change. The witch will catch me despite how I try to impede her progress. Here the thing is to know the witch intimately, not run away, I need to face the witch, actually embrace the witch. The witch has been a powerful archetype in my life. She’s the crone, the feminine wisdom.

I guess in a way this cancer is for me an advanced course in survival. I’ve been through quite a bit in my life – madness, near-death, divorce, lost jobs, bankruptcy, lyme disease. The cancer falls right into place, I new major crisis, a new dance of life and death. 
I might have a fairly advanced case of cancer. I sure don’t wish it to be any more than it needs to be. I have my limitations. I don’t know what my limitations are. It’s not just the cancer, but really the synthesis of several circumstances such as lack of fulfilling relationship, lack of solid financial self-support, and perhaps some other factors. There’s no doubt that I’m in challenging circumstances.

what do I do, where am I going?

These are raw notes but I’m really happy doing this. This time now is the opportunity. I have a great network of communications, really unprecedented. People are interested in sharing their stories and personal experiences. Through the internet I connect with the people who have been through the kinds of things I've been through and who are interested in exchanging information on how do deal with these difficult personal situations. I have all kinds of connections on many levels with all sorts of people. The magic of the current cultural contexts of the amazing technologies arising today make these contacts possible.

For years I’ve been put off by the overwhelming nature of expressing what I have to express. Actually for many years I’ve tried. For one thing I’ve not found the words. Other people have not understood. And of course, there’s been several crises in my life. The cancer is not the first close encounter with death. As a young man 45 years ago my world came apart in a different way. I was very ungrounded. I “went off the deep end” and entered fields of energy and experience that quite put me under. I almost died in a three-story fall. I lived in intense dream worlds 24/7. I really couldn’t cope with ordinary life at all. Diagnosed as schizophrenic I was consigned to a New Jersey state hospital and treated with extreme medications as well as physical abuse. This is a whole other story, not part so much of my cancer odyssey, but a story I hope to express through another blog.

Saturday May 9, 1998
Here I am. I’ve got cancer. What am I going to do with this? Gotta let the process unfold and just take one day at a time. There are some fears. What if I lose all my energy? What if I’m unable to work? Somehow I’ll get through. I have some good support, some good friends.

Strange that I have cancer. I could die. I’m pretty young. Always thought of myself as healthy. I guess I’m not so healthy. Weil says cancer represents a breakdown of the immune system.

Gotta keep moving. Writing’s a part of movement, just keep my fingers working.

I feel like I’m coming right up to the deadlines. I meet with oncologists next week. Wednesday, only a few days away really. They might want to start chemo or radiation right away. And where will that put me? Might really lay me out, change my life. Might disfigure me. I gotta accept all of this. Although alternatives may be effective I’m not really in a strong place vis-a-vis my body. My body’s systems have broken down to this point.

And what about my son Kenny? And what about my work? Gotta take it all one step at a time. It’s putting me in touch with the real limitations. I’ll only get done what I get done while in a body. How can I benefit others with what I have done? Then again, I might move through and recover, perhaps even recover completely. I might be in a whole new place.

Sunday May 10, 1998
On my way to Allentown to visit Drew and Maggie.

It’s up to me to find the way to hold my own space and find the way that I am finding support with others. Actually I do have people that care which is a tremendous, precious gift.

My online friend Ladybear writes that she’s “with me”. She’s such a precious gift. I think others are with me too. Some are afraid to say they want to be with me.

This morning I read a recent interview with Whitley Streiber by Sean Casteel at Casteel’s site. In some ways I don’t really relate to Streiber and in some ways I do. I really feel that Streiber in some ways could do with some more loving but I guess it’s not my place to say. At any rate, I think what he says about meditation, taking the focus off the mind and putting it on the body, is really true. Focus on the body is focus on the breath.

Furthermore, I still really love the Tibetan imagery. I would like to work with the Medicine Buddha. I really need to come up with more personal visualizations and I need to practice these visualizations. This is part of my healing. I think the walking, the moving and the exercise are critical as well. These are things I can do.

I think the part that is hardest is with the food. I eat so much junk. I guess I gotta accept that this is a component and just maintain my awareness. I’m not into erecting “steel barriers” within myself, some kind of hard discipline, seemingly what it would take for me to get into the serious diet. However, a different approach may work. I don’t have a definition of this approach but it is something to do with just doing out of a gentle awareness, not making any big deal out of it. Really this is how I quit smoking, by saying “just today I won’t smoke.” This is the way I’ve been able to move ahead with my PMHCA work and I think it’s the best way for me.

Heading back down from Drew and Maggie’s. They are just some really beautiful people who are true friends.

So much to say and I’m only gonna be able to say a piece of it. Still it’s important to say what I can. I’m thinking of Mike Susko’s biology of fragility. It seems my whole body, my whole mind, the infrastructure of who I am is very fragile in some ways. However, there are powerful energies at root. So I may have to move through some of these structurings coming apart, like the PMHCA connection and I don’t know what other relations. The good news is that there is transcendent beauty behind all of it.

I’m moving into the completion of that original dreamlike image I had many years ago of “cancer ward” and our tumor infested bodies being thrown together into a tank to be placed in the center of the earth. A shamanic communion. A lot is manifesting. It’s really time to tell my story in terms of shamanic crisis.

Monday May 11, 1998

Despite the high degree of “voidness” or insecurity or lack of objects to cling to I’m still present and I can move through. Or not. Whatever happens it is true that I still need to let go, to be present. The teachings still apply. I’m called to put some radical stuff into place.

But who am I? Lots of folks have been called to “give it all up”. Really there are many others who have had it far worse than me. I’m lucky. The Jews in the Warsaw Ghetto. The Tibetans that had to flee Tibet on a moment’s notice.

I’m still alive. I still have good things happening. I can rebuild. Perhaps things are best this way.

Kenny is one of my main concerns. Doesn’t look feasible to hang around here in Reading. Should I go to Harrisburg? Should I take Drew up on his offer and move in with him and his family? Should I try to get a place of my own together around here? I wanted to stay in place for Kenny. But from here it looks well nigh impossible. I don’t know whether I’ll be able to support him adequately with my health situation. I don’t know whether I’ll be working. Lots of “I don’t knows”.

Wednesday I confer with the doctors. I’ll know some more about further possibilities and course of treatment from there.

I gotta stay present with my responsibilities. It’s a challenge but doable. I gotta keep my job and work going.

I gotta call on my special energies. I gotta call on God. I gotta see this through. I gotta focus on my work. It’s definitely doable but I can’t fuck around.

I get my biopsy

Tuesday May 5, 1998
It’s my daughter's birthday and I’m in the hospital in a gown awaiting a surgical biopsy procedure. Don’t know what the effects of this procedure will be – will I be in pain? Will I have physical effects?

This medical experience has put me in touch with images from my encounters with hospitalization of 28 years ago. One image that came up this morning was of my self-imaging as compared with images of others. I am naked in a hospital gown, inside the medical infrastructure. I’m in a kind of timeless place. Others are outside living and enjoying their lives. I am separate from them.

I recall being wheeled in on my gurney for the biopsy procedure. In the operating theater I look over at the wall and see a cabinet. All kinds of heavy-duty hardware, metal equipment is stored in the cabinet. Kind of a daunting view. Despite the rather surreal view I know that I’ll be anesthetized so I probably won’t be aware of anything further until I wake from the anesthesia.

I wake from the anesthesia in the recovery room. A few minutes after waking my ENT doctor comes in and says “you have cancer, squamous cell cancer of the right tonsil.” OK I think, and I ask “what is the treatment for this?” The doctor answers: “x-rays”.

Wednesday May 6, 1998
Gotta get my work done.

Why am I here? Why am I alive? This is the big question for me as a human. Seems like it’s time to move into some kind of final completion phase; this final phase being my ideal expression of who I am. I am healthy enough right now and motivated to do for others.

So now it looks like I have throat cancer.

Friday May 8, 1998
I’ve got cancer now.

This morning I woke up and felt tired. Like I didn’t want to fight. I think I’ve felt this a lot in my life. But I also have felt other energies, the energies of wanting to live and make a difference and get things done. I think the energy of wanting to live is superior. So now I’m on a path of movement. The awareness of weariness sometimes comes forward and persuades me to lay down. But the life energy inspires me to get up and keep going.

Driving for my pizza delivery job. It’s a rainy day. I don’t feel like being here. I feel like I’m wasting my time in a sense. Just the act of making money for money’s sake seems to me to be a waste of time. However, I guess it’s a means to an end. I’ve gotta keep on generating money to maintain my life.

I didn’t get a whole lot done today for my job with PMHCA mental health. I’m not sure what to do about this situation with PMHCA. I mean, I’ve gotta put the hours in. But Shelley says relax and take care of my health. I don’t have a lot of sick time. What am I gonna do? If I can find the way, truly find the way to do my creative process and enjoy my creative process, that would work. I could put a lot of time into the web page, I can put energy into communication. But it’s up to me to lay this out. I’m really pretty much independent, I do have a free hand in this, which is a gift, but I still gotta do the work. I gotta take it all one step at a time, like a meditation.

It’s a rainy night. With this cancer I’m given the opportunity to come into touch with my mortality. I may die. There’s a lot of beauty to be experienced in the moment. Still, as humans we seek the distraction.

In October of 1997 I was diagnosed with Lyme Disease. Actually I had had Lyme for about a year and a half before formal diagnosis and had had many intense symptoms that came and went such as swellings in my feet, ankles and knees that made it very difficult to walk. In the summer of 1997 I had an abiding sensation in my throat that lasted several days, it felt somehow like something was stuck in my throat. I thought this symptom was just another of the host of symptoms from Lyme Disease.

During treatment for Lyme a large swelling or lump appeared on my neck. In researching information about Lyme treatment with antibiotics I thought the lump was perhaps I reaction to antibiotics called Herxheimer reaction, a swelling one can get from antibiotics. The swelling persisted.

The swelling was there for months and showed no sign of abating. I decided to wait to get the swelling checked out as I didn’t have health insurance. I had a job pending for start in the spring. That job came with health insurance. I saw a doctor in March. The Doctor wanted me to have the swelling checked out and referred me to an ENT doctor.


Tuesday April 7, 1998
On my way back from Pottstown. I saw Dr. B...., the ENT physician. We’re getting into a whole procedure here, more than I had reckoned. First I have to call my primary doctor and get a referral for an MRI. Then I have to see Dr. B...  again. He’s talking about me going into the hospital for a day and having a biopsy. I’ll be under anesthesia for that procedure. That’ll be OK. I guess it’s better than a procedure where I would be awake.

Thursday April 16, 1998
Just had a flash of an intense dream I had almost 30 years ago, sitting back at West Grand Street in Elizabeth and seeing the book Cancer Ward and thinking of throat cancer and how that would be the embodiment of the war of the opposites, how those who come into enhanced or radical awareness had to pay the price with physical afflictions. And so here I am today with a lump at the side of my neck, really at the level of the throat.

Friday April 24, 1998
Just got done with my MRI. It was more technologically invasive than I had thought it would be. I had to get a dye injection. The dye wasn’t bad. The dye didn’t have a bad effect like I had thought it might. I didn’t like going into the MRI tube. It was pretty loud and close in there. I did some meditation though so it wasn’t so bad.

Friday May 1, 1998
Heading down to Baltimore. I didn’t think I was going today. Car got together and Mike said he wanted to hang out with me so that’s good. Once again I’m in a dynamic time period. Tuesday I go under anesthesia to get biopsies of my throat. I guess I’ve got a tumor in the neck. Don’t know if it’s cancer or not. I’m not sure if I even buy into that model. I’m not sure what I’d do if the doctor recommended that I go under chemotherapy. I’m not inclined to do it. 

Maybe I could radically change my diet. Problem is, I don’t know if I have the emotional enthusiasm to go on some kind of dietary regimen. I’m not afraid of death. In a way I look forward to it. In a way, these latest health developments are kind of exciting, I have to admit. What if it’s my time to go? 

It’s also very interesting that during my intense dreams of 30 years ago I had an image of throat cancer. The image of cancer was very clear and I felt like I was going to come down with it. Of course, so much of my vision was about the “latter days” and that I would have to wait for the “great transformative process”. Maybe this is the time now. Maybe this is the time of completion. Maybe I will get very ill. I don’t know.

Sunday May 3, 1998
Tuesday I go for a biopsy at Pottstown Hospital. I guess this is the next step. I pray that my voice doesn’t get affected. Even now I feel a slight sore throat. I know I’ve had significant throat problems over the past year. So I don’t know what will be with this tumor here. We’ll just have to see.