Update for January 1st, 2004

Jan 1, 2004

Medical Update 

Happy New Year everyone! As I write you on this sunny New Year’s day in Connecticut I am grateful to see a new year dawn with such hope and gratitude. To quote the Grateful Dead, “What a long, strange trip it’s been.” “So here’s the update on the latest developments. 

Before I relate how the radiation treatments are going, I need to mention first that the combination of travel, exhaustion and stress all took their toll on my immune system and, despite my careful preparation for treatments, I caught a head cold my first weekend here. I only get a cold or flu once every decade or so and I’d already had one in 2000 so I was good till 2010 or so. Not!    After the initial fever and chills, I am still dealing with a congested head and persistent cough. Nothing could be more counter-productive right now than that! 

Tomorrow I go for my final radiation treatment and I will be more than ready to finish them up. While the first dose gave me headaches and nausea, subsequent doses were less severe but had longer lasting effects. Actually, it’s more like cumulative effects with each succeeding treatment. Essentially I’m more or less OK the day I get zapped until a few hours afterward, when my head begins to get fuzzy and I feel exhausted. By that night all I can do is rest and not move too much. 

The next day is when I really notice the effects. For those of you who can relate to a hangover, that’s pretty much how it feels. I have fuzzy thinking and a low level headache and I can’t bear bright lights, loud noises or quick movement. I also have to nap about every two-three hours all day long. The effects last for a few days and just when I begin to come out of that painful fog, it’s time for the next treatment and I’m back to square one. So picture a two week hangover (with a head cold) and you more or less get an idea of my experience. The radiation also gives me a queasy stomach so it's killed my appetite and I now weigh a mere 105 pounds.

The good news is that these side effects should diminish and disappear about a week after my last dose so I am looking forward to a clear head soon. Meanwhile it has been a bit of a challenge engaging in all the holiday festivities with a boisterous Italian family. I find that if I put an ear plug in my good ear it cuts down on the volume level and if I sit very still and not move too much I can actually sit around the table and be part of the action. 

As for my prognosis, Dr. Lederman is confident that the tumor’s growth will be stopped. On tumors of this size he has had a 100% success rate in stopping growth (only 99% on smaller tumors) so he doesn’t expect to see me back for treatment.  Interestingly enough, contrary to my original understanding of what is zapped, the LINAC technician, Tommy, showed me the area that’s being radiated and the target area extends in a full circle around the tumor’s perimeter by quite a bit.   

Apparently, they don’t worry about hitting bone tissue, and they say that the nerves imbedded in the tumor mass can take up to 7000 rads before they react (I’m only getting 2000 rads total) and they avoid any epithelial tissue where possible (eyes, mucus membranes, etc.). So the target area circle is wider where it hits up against bone but closer to the tumor where it passes to the front where the optic channel is. They want to be sure to zap any stray tumor tissue that may be tucked in or behind surrounding tissue so it can’t possibly grow back later. They are being very thorough. 

For follow up I’ll have to do an MRI every six months for the next two years just to be sure there’s no regrowth, but that should be pretty much a formality. When all is said and done, hopefully this particular saga may actually be coming to a close. Amen… 

Philosophical Musings 

There is much to muse about and perhaps one day I will write a book on it but for now I will relate a few things to chew on. As you may remember from the last update, my dad and I were invited to be on Dr. Lederman’s new promotional video. Well, we made an extra trip down to New York on a Sunday to participate and I suspect they’ll be using some of our interview footage after all. 

Dr. Lederman conducted the interviews and basically asked very general questions and then let us answer at length. In my case, he had me relate the history of my AN, what it was like going through surgery, what another surgery might entail (here I got emotional) and how we came to find him and his facility. All of that was pretty straightforward stuff, but what was really interesting was the end of the interview when he asked my dad about having discovered SIUH and having urged me to go for radiation treatments there. My dad then told him that I was an environmentalist and organic and that I resisted the idea of radiation because it conjured up scenes of Hiroshima, Nagasaki and Chernobyl. 

Dr. Lederman then asked me what made me change my mind about radiation so I shared with him my new perspective on it. A good friend in Montana had e-mailed me at one point about her own experience of having lived next to the Los Alamos nuclear facility in New Mexico. After 26 years of being in a community who dealt with radiation for a living, she came to a new appreciation for it. Basically she realized that radiation is essentially the creative life force in the Universe. It’s what you think of when you think Big Bang, when stars are born or when suns go nova. It is actually pretty amazing that humans have discovered how to harness such incredible power and channel it into pencil thin beams that can be used to heal tumors. Wow.  

Thinking about it in that light gives it a whole new perspective. So I chose to think of these treatments as “going nova” and allowing the Universe’s creative force help heal me. Dr. Lederman seemed intrigued by my response and asked if I really believed what I’d just said. I replied that of course I believed it, whether it was accurate or not, because it’s a known fact that when patients view their treatments favorably they have a better healing response. I’d much rather think of a starburst than Hiroshima, wouldn’t you? I am incredibly grateful to my friend who let me view radiation in a new light. 

As our interview drew to a close, Dr Lederman asked me what else I had done to try to heal this tumor without radiation. I told him how I personally knew 7-8 people who had cured themselves of cancer using only alternative healing modalities and that I figured if they could cure cancer then certainly I could cure a benign tumor. However, that didn’t happen. “Why is that?” he asked. I replied, pointing upward, “Ask God.” To which he responded that when he spoke with God that morning he didn’t know to ask Him that! 

Chuckles aside, Dr. Lederman wanted to know if I felt I was a victim of bad luck or circumstances. I immediately replied that that was not the case, that in my world view everything happens for a higher purpose, whether we can see it or not, and that for me, there would be only good coming out of this experience. He wanted to know what kind of good I might foresee and I was honest in saying that I wasn’t 100% sure but that maybe my experience would serve to help others who have to face surgery and/or radiation and that I would definitely recommend his program as a viable and desirable option. I think he saw a new crusader for radiosurgery in me and he may be right to some extent. His program has saved my life and I highly recommend it to anyone facing surgery for a tumor of any kind.

Well, that’s all I have for now. I will probably do one more update in a few weeks, possibly with some new pictures, but it will wait until my head clears up. Once again I thank all of you who have sent me your prayers and e-mails and positive vibes. May you all enjoy a blessed new year full of health and well-being! 

A special thank you goes out to my parents and brothers for helping with the cost of my treatments and especially to my dad who, at almost 80 years old, accompanied me to every appointment and drove me home five times through two hours of New York traffic. My entire family has been incredibly supportive of my healing process.

Much love, 


Note from Joe:
Weather permitting, Val is due home the evening of Tuesday Jan. 6th. after a 20-hour travel day. (due to a snow delay and a missed connection, mine was 23 hours.) She has asked for a copy of the CT scan films from SIUH (where they calculated the volume at over 20cm3.)   I will post some images on the site when they are in-hand.