Postings on my Cancer to the WELL



health 1035: The Cancer Club

#114 of 214: Bobby (bobby) Tue 12 May '98 (12:09 PM)

Just diagnosed with squamous cell cancer of the right tonsil. I have a tumor in my lymph node on my neck. I noticed the tumor in my neck during antibiotic treatment for Lyme Disease last October. At the timeI thought it might be a blocked lymph. Had to wait for new healthinsurance to kick in before seeing the doctor.

I had an MRI and laryngoscopy with biopsies last week. Cancer is at stage T3 N3 M0.

I see oncologists tomorrow. Don't know what to expect. Will I be able to function? Doctor said in response to my question of "chances of cure" that they were 50 to 60%. Don't know whether he was talking about curing the disease or dying. The doctor indicated radiation, maybe some chemo too. Blech.

I have good support in a friend of mine named ladybear who went through intense cancer experiences back in the '70's. Her far out story is on my web site at:

http://www.well.com/user/bobby/healing/ladybear.html

I'm a very spiritual mad person. Things are kind of intense right now, even for me. My live-in partner of 10 years and I are separating and I'll be moving out. I have a 16 year-old son who lives with me. Don't know whether I'll be able to work. Gotta take things one step at a time. I'll know more about treatment options tomorrow.

I'm a member of a lot of clubs --- madness, mensa, near-death survivor, buddhist, lyme disease, ex-guru follower, intensity club --- among others. Now I get to join the cancer club. Guess I'm a lifetime member. Feel like I already paid my dues but the price has ratcheted up a notch or two. Ain't life a trip?



health 1035: The Cancer Club

#129 of 214: bobby (bobby) Wed 13 May '98 (07:55 PM)

Today's medical news

Saw two oncologists today. The first guy was a radiation doctor with whom I talked for over an hour. He said that as far as he is concerned the best plan would be to start with surgery. This will probably involve removing the lymph nodes on the right side of my face and the cancerous tonsil area. There was some discussion as to the amount of material that would be removed. Might include part of the jaw and/or jugular vein, back part of the tongue, etc. Depends on what they think is best to get all cancer.

Then the radiation. I would go for six weeks. The dose would be pretty heavy to both sides of the neck and upper chest/throat. My teeth would be affected and the hair on my cheeks (don't grow much anyway). The worst permanent effect is that I would lose my saliva producing capability. My throat and mouth would be "naturally" dry and I would most likely always carry some kind of liquid. There would be some heavy duty transitory effects like burn pain and loss of taste. There could be some disfigurement to my neck. Removal of the lymph would produce swelling at the neck and I'll have a long scar. Maybe won't be much disfigurement. I don't know.

I guess those are the two biggies for me -- the loss of saliva and the possible disfigurement. I can live with them.

I'll probably go for surgery in a couple of weeks. Will take about two weeks to heal, then another two weeks to further bounce back. Then I start the six weeks of radiation. Side effects kick in after 7-10 treatments. Most "miserable" for about 2 weeks or so, then again at the end.

All three doctors I spoke with so far are optimistic about cure. The radiation guy said I should be just about fully recovered in a year.

I probably won't have to do chemo. The guy who was supposed to assess chemo said "no chemo".

All the doctors will get together soon and come up with their recommended treatment plan.

This morning was hard. Lots of issues coming up for me. Feel pretty OK this evening. One day at a time.



health 1035: The Cancer Club

#133 of 214: bobby (bobby) Wed 13 May '98 (08:37 PM)

Thanks for that encouragement leroy. I like that story about Buck Owens. (don't know who he is).

The doctor who did the biopsies and laryngoscopy said my vocal chords were not affected. That was good news! I value my voice and have been blessed with a good one. I'm really into communication and it's my creative passion to speak. My work includes things like doing public presentations and workshops on the positive and spiritual qualities of experiences of madness. I have a lot to say and wouldn't want to lose my ability to speak with clarity and resonance. The show ain't over.



health 1035: The Cancer Club

#136 of 214: bobby (bobby) Wed 13 May '98 (08:51 PM)

I'm going to see what I can dig up tomorrow about other options. I'm on an HMO but have a "point of service" option. Don't have much money, but if I were to come across a really favorable opportunity (don't really know what that would be) I could perhaps go for it.

One guy I'm going to ask to talk with is my "family doctor", my primary HMO doctor. I chose him because he is the only doctor I knew of in my area who was holistically oriented at all. I haven't spoken with him since he referred me to the specialist who did the cancer tests. I want to see what he thinks about the procedures that these guys are talking about.

There are some other networking possibilities as well. Locally there's a doctor who is very much in tune with Dr. Bernie Siegal and runs a cancer support group. I want to go to the next meeting and talk with survivors. Then on the net this morning I saw some kind of cancer wellness support situation in Philadelphia. I'll call that number.





health 1035: The Cancer Club

#142 of 214: bobby (bobby) Fri 15 May '98 (11:36 AM)

Yes, folks all around have been "through it".

I've been complaining some, even a bit of feeling sorry for myself. Yesterday I visited a usenet cancer group. What I saw made me realize that there's plenty of folks that have it a whole lot harder than me. My health insurance kicked in just in time. Yesterday I read several accounts of folks who were facing tens of thousands of dollars or more worth of medical treatment with no insurance. The opening post of a thread I read described a really tough situation of a couple where a 42 year old mother of two young children had a devestating form of cancer and no insurance.

My process is dealing with some difficult new circumstances while being as aware as I can be. Part of my process is letting go of how I thought things would be. There's a lot of changes happening in my life, not just the cancer. As I mentioned, I'll be leaving a relationship of ten years. This has difficult aspects, but in an overall sense the changes are very positive for each of us. Developmentally, Heather has her own life process to deal with. In a sense, my work has overshadowed hers. The good news is that she's getting in touch with her own power.



health 1035: The Cancer Club

#143 of 214: bobby (bobby) Fri 15 May '98 (12:02 PM)

I've been making some extra connections for medical information yesterday and today.

Yesterday I called the National Cancer Center (or something like that). They'll be sending me information on clinical trials that will be happening in this area. Don't know if this would be useful but it's a step.

I have an appointment next week with my primary care physician who is somewhat holistically oriented. I know he's done acupuncture and know he's into an "healthy immune system" frame of reference. It'll be good to get his perspective.

Next week I also have an appointment with the brother of an old and dear friend of mine who I think actually is the head now of a national association of acupuncture and/or chinese medicine. I'm gonna get some chinese herbs to work with my health.

Looks like I'm probably gonna go ahead with the Western medicine "aggressive approach". My cancer is stage four. I can't fuck around. Don't have financial resources to seriously check out anything else anyway. The lymphatic tumor in my neck is pretty extensive and so is the primary one in the throat.

Today I saw one of the partners of two who will be doing my surgery. I consider him a medical technician. He seems to see only sees the medical case. To me, this illness is connected emotionally and spiritually in very interesting ways. I don't think he's interested in hearing these connections. He seems to be a technician not a "holistic healer". I've gotta be a healer for myself and I'm gonna see what other kinds of healers I can connect with.

The medical partner I saw today was pretty graphic with his descriptions of what's going on. It was interesting that he had a smile on his face while describing some fairly lurid (at least for me) possibilities to this whole thing. Actually his demeanor for me is OK. I see him in the same way as I sometimes regard other situations or beings, a kind of wrathful deity in the Tibetan Buddhist sense. He's here to help in a deeper sense than is conveyed by external appearance.

I go for the surgery. A radical neck dissection. I was dismayed to learn that the nerve for my right shoulder will be impacted. I don't like the implications of that for my posture and appearance. OK.

Then the radiation. Six weeks of radiation. If things go well, there's the possibility, perhaps a fairly good possibility, I'm not sure, that the radiation will cure the tumor on my tonsil that is running down my throat. I'll lose my saliva but I can certainly live with that.

If the radiation is not sufficient to kill all cancer, I'm looking at a second surgery to directly remove the tumor in the throat. This surgery would be more intense and involved than the radical neck dissection (pretty terminology, eh?). A chunk of my throat would be removed. I would need skin grafts. Could affect different areas. Serious stuff.

The doctor today spoke more seriously of my condition than the one's I've spoken with so far. My 5-year prognosis is 25%. Only 1 in 4 who have my condition make it after 5 years. Actually that doesn't disturb me. I'm not afraid of death. I'm a near-death survivor. The possible physical consequences are more fearsome in appearance to me from here.

There are some really beautiful potentials though that may happen out of all of this. I believe I'm gonna make it through.

One day at a time.





health 1035: The Cancer Club

#154 of 214: bobby (bobby) Tue 19 May '98 (08:36 AM)

Thanks for all your good thoughts and wishes friends.

Moving forward this week with meetings and appointments with friends, doctors and alternatives. My guess is that the surgery will happen next week. I'll find out for sure on Thursday.

Looking forward to the next procedure, the surgery, has qualities of unknown dread. Can't be sure of the extent of the surgery. What qualities of life will be lost forever?

The brighter aspect is that I pretty much accept all of this and am a survivor. Spiritual experience and meaning is kicking in. I'm having some wonderful meditation. I'll make it through.





health 1035: The Cancer Club

#157 of 214: bobby (bobby) Tue 19 May '98 (12:39 PM)

I think I'll be in the hospital for about 3 or 4 days. Then I'll recuperate at home. Someone will have to come in to take care of tubes, dressings, etc. Don't really know.

I understand that basic post-surgery convalescence is two weeks. Then another two weeks for further healing before starting radiation treatments.





health 1035: The Cancer Club

#163 of 214: bobby (bobby) Wed 27 May '98 (09:11 AM)

Lots has happened in the week since I last posted. I thought I was going to have surgery right away. The lymphatic neck tumor is too extensive for surgery. The medically recommened course now is to shrink the tumor through chemo and radiation. This would start as soon as I get my teeth fixed. Getting my teeth fixed might be redundant as it seems that there's a good chance I'll lose them anyway due to the changes in mouth chemistry. With radiation for sure I'll lose most if not all saliva.

This morning once again I feel shakey and usure. My acupuncture/chinese medicine/alternative old friend with a practice in Arkansas called me this morning and suggested I convince the doctors to go with just the chemo. He says he's seen chinese herbs and chemo work to reduce the tumors. That's the point of all of this, isn't it?

This morning I'm sitting with the premonitions of bodily limitations and disfigurement more real than ever. It's work to get the answers. It's work to talk with the doctors and practitioners and even friends and support people on the net (like you guys).

I've been taking chinese herbs for a week. I see my local practitioner this afternoon. He's friends with the friend in Arkansas and they are collaborating on my case.

I may or may not start radiation/chemo next week. I don't really know what to do. There's no "master healer" available to me. I gotta go inside and talk to God / Buddha. I want some answers. I've been doing some Medicine Buddha practice, some prayers, meditation and visualization. These practices feel good.

It seems like the most real answer is gonna have to come from me. The closest I can come to the "feeling in my gut".

There's no guarantees for any of this.



health 1035: The Cancer Club

#164 of 214: bobby (bobby) Wed 27 May '98 (09:12 AM)

Anybody know of anyone that got better with Chinese herbs? One I'm taking is supposedly particularly potent. It's called "9405". I even found a write-up on the net. http://www.china-guide.com/health/anti-cancer.html

I'm also taking chih-ko and curcumin. And various other vitamins, anti-oxidants and amino acids.





health 1035: The Cancer Club

#167 of 214: bobby (bobby) Wed 27 May '98 (10:12 AM)

thanks strega, that's good advice on medical advocate.

I have some great support friends, including one person in particular who has been making calls for me to old friends. It's her brother who is the big-shot chinese medicine person and it is she who got in touch with our mutual friend Michael in Arkansas. She's a bit of a distance away though. I'll hang with her on Saturday.







health 1035: The Cancer Club

#177 of 214: bobby (bobby) Fri 29 May '98 (09:34 AM)

Dear friends,

I am deeply grateful for all your support. Things are looking good.

I'm going for just the chemotherapy starting next Tuesday. I've been talking with a lot of folks -- consulting with Chinese medicine people (friends of mine but real practitioners), cancer survivors, support people on the web, and Tara the compassionate Goddess and Medicine Buddha. I've also been reading a lot of different stuff.

I don't want to do the radiation, at least for now. I'm looking for healing and don't want the permanent side-effects from the radiation. I defnitely want to live and Will Live (as long as it is God's will), so I've been going through a lot of process to see what is my best strategy. I believe I will get through all this. It may be a longer-term process than the "quick-fix", eradicate all cancer, aggressive approach of the medical team, but it is a process in tune with who I am on many levels. I want to be as whole and integrated as I can be.

This morning I called my the chemo oncologist and told him that based on my intuition, understanding and research I wanted to go with only the chemo, at least for now. To my delight, he was completely cooperative, even agreeable. My first dose of chemo starts on Tuesday.

Meantime, I continue taking chinese medicine, vitamins, anti-oxidants, eating better and doing prayers, mantra and visualizations. I feel good that my personal healing strategy at this point satisfies all conditions, situations and people, as far as I can see.

My upper teeth were all pulled yesterday. This had to be done right away for radiation, but actually needed to be done anyway. My dentist is a Christian and a wonderfully generous and giving man. He knows my situation, including financial problems and has done this dental work completely free of charge. He is even arranging to get my upper full dentures for either free or half-price. He is checking with his denture contacts with whom he does free exchange work for clergy and missionaries. I feel honored and deeply grateful.

All this cancer and health process is in strong alignment with emotional and spiritual conditions having to do with charting my own course in this body, on this planet. In these ways and much more, the cancer is a gift.





health 1035: The Cancer Club

#197 of 214: bobby (bobby) Tue 09 Jun '98 (01:16 AM)

Hi folks.

I started the chemo last Tuesday. A relatively low dose. Side effects not bad. Mostly tired a lot. I'm taking carboplatin and taxol. Next dose is tomorrow (Tuesday). I'm not looking forward to it. These are toxic substances I'm putting into my body. I guess I'll be getting this once a week dose for several weeks at least. Don't really know.

I need to understand more. I put in a call to a woman who runs some sort of cancer service. I think she provides alternative information. I need to understand more what I'm doing and where I'm going with this cancer.

I believe very strongly that this cancer is emotional and spiritual as well as physical imbalance. I've been rather chronically imbalanced in my life. Seems dreamlike that these rather severe physical distresses have showed up in my life over the past couple of years. In October I was diagnosed with Lyme Disease. I reckon I had the Lyme for about a year and a half with major arthritic type symtoms and other weird body effects. I may still have it. And now the cancer.

The tumor in my neck does not seem to have grown and may have shrunk in the past week. I believe in the possibility of healing this through non-medical means, but I also work as best as I can with prevailing system. I don't really know what is going to work.

Then there's the other life system changes going on. I'm leaving my 10-year relationship. My son and I will be moving to Eastern New Jersey near where my parents are. I'll be working for my Dad's small printing business. This will work for everyone. My Dad will have the opportunity to bow out of the business. I'll be upgrading the business to computer basis. I should have some fairly decent income.

Definitely in major transition these days. Seeing mostly in terms of one-day-at-a-time.





health 1035: The Cancer Club

#203 of 214: bobby (bobby) Tue 09 Jun '98 (01:13 PM)

blueduck said: "chemo helps a lot of people".

I suppose your right blueduck, but I want to know and practice what's best for me. Sometimes chemo doesn't help. And chemo is definitely a toxin and can create problems on its own, including more cancer. Anyway, I appreciate your pointing that out.

My chemo doctor is kind of waiting for me to be "ready" to go ahead with radiation. I'm not sure if I will or not. Today before the chemo he examined me and said that the tumor in the lymph on the side of my throat was 50% smaller. He checked the primary tumor in the tonsil and said that that looked good.

I'd love to see the symptoms of this disease dissolve over time. I'd rather come through in a good way, with at least toxic effect as possible. I'm not particularly in a hurry. I attempted to engage the doctor some in dialogue about the course of treatment. He's a kindly person, but not really a listener. I'm not aggressive, but I'm strong. I usually find the way to express what I need to. I see my strength winning in the end.

Thanks for your support folks. Really feels good. I hope people don't mind speaking personally. That's my way. I like to put it all out there.







health 1035: The Cancer Club

#206 of 214: bobby (bobby) Tue 09 Jun '98 (07:28 PM)

I appreciate your support of Western Medicine blueduck. I really do. I know that I've railed against it in a half-cocked manner without realizing how beneficial it actually has been for me. In 1969 I fell three stories and broke every bone in my skull. I was put back together quite masterfully. Doctors called it a miracle. Indeed, scars are hardly apparent.

However, following this, I was locked up psychiatrically in the throes of intense spiritual experiences. I was abused physically, mentally and emotionally. Took me a long time to work that one out. I still have some anger. In recent years I've been very active with psychiatric alternatives as my work.

And then the Lyme disease diagnosis in the fall. Several weeks of antibiotics knocked out some pretty severe symptoms. I had barely been able to walk. I thanked the doctor.

As I say it's real clear to me that this cancer relates intimately in levels of mind, body and spirit. I want to be here and I want to heal. I want to *know* for myself what works. Chemo doesn't always work. I want to be as whole as I can. Great line in a great book recommened by lioness -- *Healing through Imagery* or some title like that.

None of the treatments work for everyone. Every treatment works for someone. I honor the doctors as best as I am able. Truthfully, I don't entirely trust them. I don't sit well with the model "aggressive treatment". On the other hand, if I have to be damaged I'll go that route in order to survive. I see this as a shamanic practice. I want to scan the picture of a Alaskan Shaman with a scarred face that Campbell has in one of his great mythic works.

One of my dilemmas is that I've wanted to find the "master healer". This is not just for illness, but has been a kind of life-long spiritual quest. I've not found her/him in a body. The teaching for me is I gotta use my body to work out all my dilemmas as best as I am able.

I like Levine. I've read several of his books. Love "meetings at the edge." and "Who Dies". Thanks Lily Pond.



health 1035: The Cancer Club

#207 of 214: bobby (bobby) Tue 09 Jun '98 (07:35 PM)

I read Siegel years ago.

I also have a friend, Al Siebert, who wrote *The Survivor Personality*. He was a keynote speaker at our Pennsylvania mental health "consumer/survivor" conference a few years ago. Siegel wrote an intro to his book.

Here's Al's webpage:

http://www.thrivenet.com/

I'm a survivor for sure.



health 1035: The Cancer Club

#212 of 214: bobby (bobby) Wed 10 Jun '98 (02:30 PM)

I think I'm doing a pretty good job of evaluation. I'm taking everything one step at a time. It's not like I'm refusing any treatment. I want to see what works the best. I don't want to jump into anything.

I decided not to do the radiation at this time. Right now the tumors are shrinking. As long as I'm making positive progress, I'll continue with the direction I'm going. Radiation will have permanent effects on my body, both loss of saliva glands and damage to immune system -- or worse.

I want to be here. That was a big, clear decision for me. (I've not always felt this way. As a near-death survivor I have some different perspectives.) Given that I want to be here, I look to optimizing the quality of life. This factor doesn't seem to enter in much into many of the postures I've been dealing with. I think it's important. My chinese medicine consultants see quality of life as important.





health 1035: The Cancer Club

#214 of 214: bobby (bobby) Thu 11 Jun '98 (05:46 AM)

Prayers and support are good.

This morning I've been doing a lot of spiritual work. Today, like yesterday I woke about 4 AM. I'm surprised at all the energy I've had between yesterday and today. Best energy that I've had since starting the chemo last Tuesday.

This cancer walk is a spiritual walk. I've tended to move in and out of spiritual states for most of my life. I've looked to integrate spirituality practically into my life. I've had lots of ups and downs, rather intense ups and downs. Some psyrinks would look at me as manic-depressive but I don't buy into the psychiatric system. I've managed to get through quite well and have integrated a lot.

I'm not sure how much of this cancer is physically based. Obviously the symptoms are there. I'm sitting with a lot of survivor stories and I need to know what works for me. I'm not discounting any of it. I'm wary. I don't know how much to trust and that includes all of the various voices I'm sitting with, what I hear from others and what I hear from myself.

The experience for me is dreamlike and the dreamlike states of awareness is part of my awareness. I'm not so solid as many seem to mem, or at least appear to think they are. I consider my dreamlike awareness as something given by through life and death experience and as such it is a gift for me. I've definitely experienced other worlds in real ways, just as real, if not more real than consensus 3D reality.

I may have to do radiation. Maybe not. An aspect of it appears horrific. During my visions of 30 years ago I had lucid awarenesses of a kind of machine / human planetary dilemma. So much of our lives seem to be borne through into machine dependence (including sitting here typing at this machine-mediated neural network.)

If I have to give myself over to radiation I'm gonna do it with shamanic posture. Malevolvent appearances are often great Bodhisattva helper embodiments. One horror image is having my head held tied in and wired with dye-in-vein through cat-scan machine to create precise cast for mask for raditation. This is very Geigeresque.

My life is a path of finding, knowing, and articulating my Voice. I've moved through many diverse and powerful forms. This cancer path certainly is part of this spiritual path. My own path. I wouldn't recommend it to anyone. I hope I haven't offended anyone with any of these personal musings. I know they must seem weird or strange to some. For me, it's the way I best express and communicate. I know some of what I say here is only tangentally related to "cancer". I'm thinking of opening a topic like "cancer as a path" in the spirituality conference.



Love from Bobby



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