June 3, 1999 update from Dennis McKenna
NOTE: DUE TO COMPUTER PROBLEMS AND TRAVEL PROBLEMS IT HAS NOT BEEN POSSIBLE
TO SEND THIS BULLETIN UNTIL TODAY, SATURDAY, JUNE 6, ALTHOUGH IT WAS WRITTEN
ON WEDNESDAY, JUNE 3. THE REPORT IS STILL CURRENT; TERENCE IS DOING WELL AND
THERE HAVE BEEN NO MAJOR DEVELOPMENTS SINCE WEDNESDAY.
To All,
This is a further brief update on Terence, from his brother Dennis.
Terence has had the first "intervention" for his cancer, in the form of the "gamma-knife" radiation treatment, which was performed Tuesday at the St. Francis Hospital in Honolulu. We decided to proceed with this treatment after thoroughly evaluating other options. We came to the conclusion that this was the least invasive and most effective procedure in terms of the need to meet three criteria: 1. To do something *now* to begin to arrest or slow the growth of the tumor; 2. following the "first, do no harm" doctrine, this treatment will do the least harm and at the same time will not preclude Terence from further treatments of an alternative or conventional nature, including experimental treatments. 3. It "buys time" -- maximum time for Terence with maximum quality of life; and time for us to continue researching and evaluating other treatments that can be brought into play at any time, or whenever appropriate.
The treatment yesterday was apparently completely successful. Terence suffered no immediate ill effects and was able to spend the night at home rather than in the hospital. Our post-op meeting with the Drs. confirmed this; they are pleased with the outcome so far.
The protocol for the gamma knife treatment requires that Terence also undergo a further series of "soft" radiation treatments, basically focused x-irradiation treatments of the portions of his brain adjacent to the tumor, to kill residual cancer cells in those areas. This treatment will take about 6 weeks (30 total treatments spread over that time-frame) and although we have not made a final decision, we're leaning toward carrying out that part of the treatment here in Honolulu. Due to the kindness of friends, T and Christy have an apartment to stay in here, and can easily reach the hospital. On the Big Island, the nearest treatment center is in Hilo, and since they are daily treatments, he would have to either commute from his home on the Kona side every day (too much travel) or find an apartment in Hilo and stay there 5 days a week. Given the options it seems to make the most sense to remain in Honolulu for the treatments. He will be able to spend weekends on the Big Island if he feels up for it.
Spirits are high here, as is hope and even joy. We've now entered a new phase, we have "struck a blow" against this terrible thing and now we have (hopefully) bought some time, to develop a further strategy and put a plan into action. Please keep sending all your good thoughts, good vibes and prayers coming; we need those things, they are the most important of all and believe me we do appreciate it.
This may be the last, or nearly the last, of these somewhat irregular emailed bulletins. Further bulletins will continue to be generated but will be posted at www.levity.com/eschaton instead of sent in broadcast emails. Keep an eye on that site for on-going developments and fast-breaking news. There should be something posted there within the next 48 hours, and there will be regular updates after that.
Also, we are trying to implement a slightly less chaotic process of gathering information and evaluating suggestions for treatments. Many of you have approached us with ideas for alternative therapies; we welcome all suggestions and dismiss none of them out of hand. However, in instances where the treatments involve experimental medications, and/or in some cases herbal therapies, and/or invasive treatments such as surgery, our consensus is that we will make decisions and choose options *only* on the basis of full information, after evaluating the information very carefully, and probably also after bringing Terence's physicians into the consultation. His physicians are completely open to alternative treatments of all sorts *if* there is evidence that 1. they will not be harmful and 2. there is some basis to think that they may help. In this connection, we must be very concerned that any alternative treatments chosen for Terence do not preclude him from eligibility for other treatments, some of which are part of experimental protocols. The qualification criteria to get a patient into certain protocols are sometimes quite strict, and depend on previous treatments, what medications they have received, etc. So we've adopted a policy that we will not precipitately rush into any treatment without investigating it thoroughly first, and making sure that it will not preclude T from other treatments down the road which may be even more promising.
So, having said that, I want also re re-emphasize that we do welcome any and all suggestions, but also ask that you respect our option to evaluate them on our own terms and in some cases, choose not to implement them. This does not mean we do not value them! It does however provide a filter that friends of Terence can apply on their own to decide whether a potential treatment is worth bring to our attention. Particularly, treatments which must be done in a rush, and without full information available or on the basis of sketchy details will simply not be considered until we have the information we need to make a decision. If you have a treatment that you know about that you really feel may be promising and worth looking into, you can be most helpful to the process if you can supply enough information on it to make evaluation possible *or* supply references to publications, websites, and other information resources so we can access them and decide for ourselves whether the proposed treatment should be pursued.
Its now two days since I began writing this, and events have kept me from finishing it until now. Apologize for anyhing out of date, but it looks like this bulletin is still more or less current.
Stay tuned to the website at www.levity.com/eschaton for further bulletins.
This is Terence's brother Dennis, sending love to all.