Some thoughts on social impact and new consults with the doctors

I continue my cancer odyssey journal with more notes from mid-May 1998. In conversation with doctors, we talk about surgery called a radical neck dissection that would remove the lymph nodes in my neck. Cancer from my primary neck tumor has metastasized to my neck. If this procedure is not sufficient, I might need to go to further, even more invasive surgery. Interesting to note here: I never did have the surgery.


Friday May 15, 1998

Yesterday was rough in dealing with the idea of going on a leave of absence from my job. What am going to fucking do? I’m really kind of freaked. I gotta move out from here, but how am I going to make it? I have some money put away, $3000, even a little more. I was going to get a new car. I need a new car. But I’m not going to have the money coming in for the next few months like I’ve had.

It’s important to realize that even though there are major changes happening here with the cancer and life situations like needing to move and putting together my work, I am in new places with my ability to deal with these things. I have new abilities and am not so subject to old patterns and conditioning.

From a posting on the WELL:

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 devastating 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, my lady 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 143: 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.

On my way to the doctor in Pottstown. It’s a beautiful day like it’s been for the past several days. Haven’t really been in a place to appreciate it though. Again I feel like I’ve fallen into a crevasse. I’m not going to wait around to be rescued. I’m gonna make the steps to get out on my own. There’s no one to rescue me. This aspect, of falling down on the path, is pretty difficult for me. For the past several months, I’d actually felt consistently like I was getting somewhere and know I’ve got to let go of that context.

I hear wonderful stories of transformation through illness. I’m just about done with the book The Healing Path by Barasch. There’s a few stories in there that are the kinds of things I would love. The transformational stories. I want to transform my abilities here. I’m still patchwork in places although I think I’m further along than I was in the past. At any rate, I still have difficulties with my work, with coming to terms with effort. I seem to make my projects more than they are. I take an emotional fix of difficulty and then kind of stop. This pattern has been happening for me the past couple of days. I’ve got to find the way through. This cancer is intense.

Just got done seeing Dr. F, Dr. B’s associate. I guess it will be Dr. F and Dr. B who do the surgery procedure. The surgery would be about 2 to 3 hours long and will be a radical neck dissection. There may be a further surgery which would be more involved with skin grafts. This would take out the primary throat cancer. The second procedure is a possibility if the radiation doesn’t work. This could be quite an ordeal, involving whole sections of mouth and throat. The cancer may be cured with radiation. According to Dr. F, I have 25% chance of 5-year survival. 

Prognosis is not good. With the surgery there are side-effects. Looks like I would lose some control of my right shoulder and arm. That makes a big difference for me. I don’t want to lose my strength in my shoulder and arm. I always related to being strong, and now this is being threatened to be taken away. I might have some hoarseness depending on whether particular nerves are involved.

Dr. F said that many are in denial of their cancer situation. I can understand that. Things seem dreamlike to me but at least I feel I’m willing to look at and accept what is happening. I guess I’m going through with this procedure. If I wouldn’t, it seems I might have severe deterioration anyway. Dr. F wants to treat aggressively. I don’t think this is the only way, but I don’t think I have a choice available.

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.

newly diagnosed in 1998

For this blog I’ll be posting correspondence I had with a forum on The Well, a legendary online forum I’ve been a subscriber of since around 1992. The specific forum here, “the Cancer Club” was part of a conference on the Well called Health. For the most part I’ll only be posting my words, not the words of others, except to set the context for what I posted. Here’s my first post on the Cancer Club.

health 1035: The Cancer Club
  #114 of 984: Bobby (bobby) Tue 12 May 1998 (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 time
I thought it might be a blocked lymph. Had to wait for new health
insurance 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. Ladybear shared her dramatic story on the web.

I'm a very spiritual kind of “different” 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?

Intro to Cancer Odyssey

My name is Bob and I'm a survivor of squamous cell cancer of the right tonsil stage IV-b. I was 48 years old when diagnosed back in 1998, went through some chemo, then full doses of radiation. Noting that different doctors offered different combinations of radiation, chemo, and/or surgery, I attempted to find out for myself what the best treatment would be for me. I was really concerned with side-effects and at first refused radiation. I never had surgery.

In the end, what took out the cancer was the radiation. That and perhaps the Chinese medicines I took and perhaps most importantly, my meditation/spirituality practices. After the grueling radiation trip, the radiation oncologist said to me "not only is your data off the charts, but there must be someone looking out after you". He really was amazed that I survived and he continued to tell me that in the years following treatment.

Today I am cancer free, but live with very difficult consequences of radiation. My ability to swallow is shot (since October 1967 haven't eaten anything by mouth), I have substantial COPD, loss of hearing and speech impediment. These maladies are probably largely due to radiation treatment. It took years after actual treatment for the conditions to manifest. Despite the ongoing difficulties I am very grateful to be alive and I continue to function pretty well considering my impairments.

Since my diagnosis with cancer in 1998 I've taken notes and communicated about my experience with my illness. My experiences include interactions with doctors, nurses and other medical professionals as well as my personal saga of what I went through. My cancer odyssey is about me. My experience with cancer is unique to me, just as all of us who are diagnosed go through their own personal experiences unique to them.

Over time I want to post pieces of my experience on this blog. I'm posting my notes and communications step-by-step. Starting around the time of diagnosis. I will be posting what I wrote at the time as well as what I remember today. I will comment on experiences and also post of current life experience.

My hope is that what I post here will benefit others.
May wellness and good health prevail in the lives of all readers of this blog.

Bob