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June 2, 1999 update from Dennis McKenna
To all,
This is a followup update on Terence's situation, and will include many of you who have emailed in following the sending of the first and second updates. I tried to include everyone who asked to be included, if I've left you off, its due to oversight and not any attempt to exclude *anyone* from being involved in the process of healing, love, and support that has literally poured in since news of this sad development. I'm doing my best to stay on top of these lists but the process has been sporadic and imperfect due to being focused on what is happening right here and now with Terence. More about logistics later.
First, I want everyone to know that Terence knows of your love and support, all the messages coming in from many quarters and so many people, and he is moved by this outpouring. He sends all of you his love in return, and in characteristic fashion, tells everyone not to worry. Right now Terence is spending his time with his closest friends and family. Finn, his son, is here with him, as is his brother, yours truly Dennis, as well as his new lover and some of his oldest and closest friends. We are spending quality time and just trying to love him as much as possible while at the same time we try to sort through very complex sets of options, decisions, etc. regarding his immediate treatment and followup treatment. Terence is in good spirits, even though he has the disease his meds are keeping him stabilized and he looks normal and "fit as a fiddle" as he would say. His humor, irreverance, and bemused perspective continues to sustain not only him but those around him, and continues unabated.
If you want to send any non-electronic messages to Terence (no packages please) you can send them to:
Terence McKenna
c/o Levity
P.O. Box 1013
Cooper Station, New York, NY 10276-1013
We are working on getting a website set up where people will be able to read further updates on Terence's condition and progress. We will send out that information when we have it, probably in the next update, and then after that these email postings will become less frequent as most will be able to access the information from the website. Communications from family members, close friends, can still be directed to this address and I will do my best to respond. Communications from T's many friends and admirers are also welcome but I may not be able to respond; rest assured I am getting many messages and these will be passed along to T as best possible. I know everyone is concerned for Terence and the expressions are appreciated, but please do me the favor of not overwhelming my email box; the time I spend dealing with email is time I'm not spending with Terence and that is what I need to be doing right now. Besides these updates, and the webpage at levity.com which will be up shortly, Terences' condition is being discussed in several mailing lists, including the Novelty List, the Entheogen List, etc.
Also want to express our thanks and appreciation to the many people who have contacted us with information on experimental therapies, different treatment modalities, (both alternative and "conventional"), names of neurosurgeons, website URLS, database searches, etc. There is a tremendous amount of information and much of it is difficult to evaluate under the best of circumstances. We do appreciate you sending that kind of information, but ask you to rest assured that we are ignoring none of it, we are looking into all of it in consultatation with our doctors, who are both very compassionate and very knowledgable, and with such outside help, second opinions, additional info, etc. as we need. Its all available to us and we are looking at many of them very seriously. Because Terence's condition (glioblastoma) is such an intractable condition for which there are no really "good" therapies, (alternative or conventional) there are literally thousands of different treatments; that's becuase none of them seem to work very well.
So, I know that your suggestions for treatment, further contacts, leads to literature, etc. are all well meant and come from the heart, and we appreciate them. At the same time, I ask you to "trust in the process" and to respect our judgements when it comes down to what decisions must be made for Terence's treatment, both in the immediate days ahead and over a longer term of several months. Its always easy to second-guess a physician's judgement on a particular patient when you are separated from the process and do not have all the information that is available to the physician, to Terence, and to his family, and may have certain preferences or beliefs regarding various treatment modalities. I ask you, we ask you, to please not do that. Rest assured, we have an excellent relationship with our physician, Dr. Keep, we are working with him closely on all of the immediate and followup treatment options, we are consulting with other medical and alternative practitioners as needed, and Dr. Keep is in the loop and a valued consultant on *everything* and we feel that he has a similar respect and compassion for us.
Having said all that I can outline the consensus we have reached as to what is to be done for Terence over the next week. After evaluating many possible alternatives, both in terms of treatment approaches and where the treatment should be carried out, we have agreed to what Dr. Keep, with the concurrence of his case review board, has recommended as the least invasive, least disruptive treatment that will be effective in the short term, afford maximum length and quality of life, and will not compromise Terence's options or eligibility for further followup treatments, experimental treatments, etc.
Dr. Keep's review board agrees with him, and so do we, that at this point the use of what is called the "gamma knife" essentially a focused gamma ray treatment, to kill the main tumor mass, followed by "soft" radiation therapy (focused x-ray treatments) to kill the "mycelium" the remaining tendrils of cancer cells which are diffusely embedded in the brain, over a period of about 1 month, is the best of a number of treatment options. It is less risky than surgery in terms of the potential for immediate damage to collatoral areas, leading to neurological impairment and/or death on the operating table due to hemmorrhage. The procedure is non-invasive, can be done on an outpatient basis, and, with the followup radiotherapy, has just as good a chance as surgery at maximum prolongation of life and preservation of quality of life, with significantly fewer immediate risks. There is a small but real possibility that the gamma knife treatment will result in further swelling of the tumor which may necessitate additional followup surgery. But the doctor feels that the risks are small and within reasonable limits. So at this time, Terence is scheduled to have this procedure performed on Tuesday afternoon; they will keep him in H0nolulu for the next week (though not in the hospital) to monitor the situation. Over this time we will also be sorting out the logistics of the next step in the therapy, the month to six weeks of followup radiotherapy. That must be initiated quickly, as well, and we are evaluating options as to where and when this will be done. While all this is going on we will continue to gather information and evaluate it with respect to chemotherapeutic treatments, alternative treatments, clinical and experimental studies, and also what options may exist for treating the tumor when it recurs, which unfortunately is nearly an inevitability for this type of tumor.
We will keep you posted of course and through a variety of means, including these periodic if somewhat irregular updates, at levity.com and various mailing lists.
Keep sending those gift waves and hold thoughts of Terence and love in your hearts. If you think of it give him a special extra prayer and blessing on Tuesday when he has the procedure.
This is his brother and soulmate, Dennis
Love to all.
