Peter Lalor

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February 02, 2005

Sounds like a plan

Beloved friends and family,

We have a plan for my treatment. A story goes with it.

Since we initially received my diagnosis of brain tumour, Jennifer, aided by many enthusiastic volunteers worldwide who have done research and buttonholed specialists—thank you all!—has been tirelessly researching any and all potential treatments for my “untreatable� astrocytoma. She has done this whilst mothering two young children and aiding me through some intense processes of my own. Many long nights she has spent.

Throughout, I have focused my energies on facing whatever within me has come up asking for attention. If I am to die, I will carry no baggage. Lifetimes of energetic detritus I have shed, in experiences so outlandish that it would be tempting to simply chalk it up to the tumour, side effects of medications, anything. Except that I know. Oh, the help I have. We all have. Now. Always.

But this missive is to bring you up to date with the steps we are taking to cheat death this time. And I Intend to. As Jennifer has managed the research, it would perhaps be best for her to write this. But she has to sleep sometime.

Medical specialists of any relevant kind around the world have now seen my MRIs. The consensus is that surgery to de-bulk the tumour is the first step, and we concur. This is partially because the tumour is so enormously toxic that it is entirely possible to die from toxaemia if it simply begins to break down en masse. The majority of neurosurgeons that have seen my MRI feel that while tricky, it is operable. As the tumour is fairly invisible to the eye, it will not be known until a follow-up MRI is performed how much was removed. Up to 80% is considered potentially possible. A tumour starts from a single body cell that commences replicating out of control. This means that surgically removing a percentage is nothing more than a head start. It is not a cure. In this regard Jennifer’s research led her to an Argentinean specialist in dendritic cell vaccines. In a dendritic cell vaccine, the surgically removed tumour cells are killed by radiation, mixed with immune cells from my own blood and then injected back into the body, thereby training the body’s immune system to attack the tumour cells. The process is highly experimental, but should be non-toxic.

For a time we were expecting to fly anywhere within days. A neurosurgeon in New York is happy to operate for US$120k. The Argentines can do surgery and the vaccine for US$60k. It is nothing to drop a quarter mil on this.

Our global search eventually led us to a neurosurgeon in Brisbane at a hospital close to the one at which my biopsy was performed. Jennifer and I met with him on 24 January. He feels that surgery would be both feasible and helpful. He is also running a dendritic cell vaccine trial. Synchronicity! (Conveniently, this also keeps us within the Australian medical system, in which all this is covered for free, allowing us to pocket all that imaginary money that we didn’t have in the first place.) We felt very comfortable with him both technically and also personally. He has a certain ineffable openness that is vital to me, in that I feel that—given that the work is performed blind to a certain extent—he will be receptive to the help that I feel is present, and will make the right choices as he works. It is important that he does, because the potential side effects, while all unlikely in varying degrees, range from temporary (15%) or permanent (10%) weakness in my right side, to inability to create or comprehend speech, to death (1%).

I have felt for quite some time now that surgery was the next step. Whenever I have thought about it, I have heard quiet affirmatives telling me “Do it!� All will be well.

The neurosurgeon initially said that the location of the tumour is right on the cusp of requiring that it be done awake, but that he did not feel that this would be necessary although he needed to sit with it. By the end of our conversation he said that he felt that it would be best done awake. We liked the feel of him with this too, and I have been expecting that it would be done awake. I find myself surprisingly comfortable with this. Jennifer and I both feel strongly that we are on the right course.

My awake craniotomy is scheduled for the 16th of February. I will be in hospital for 5-7 days, and we will remain in Brisbane for another five days or so as a precaution. The dendritic cell vaccine takes some ten days to prepare, and then I have injections, MRI scans and blood work every two weeks over the course of twelve weeks.

So after all that, do I live? I wouldn’t count on it on those treatments alone. I have been taking Asian plant medicines prescribed by a forensic pathologist (who used to work for NASA; Jennifer loves that bit) with a speciality in rapid cell division. He is greatly restrained by Australian privacy laws from discussing his success rate, but states that his treatment is freestanding. Apparently, we are unwilling to bet my life on that either; hence the surgery. There are numerous other possibilities for subsequent treatments, but we feel that we need to take the door in front of us before we can consider future steps. At any rate, Death will be ill advised to attempt to close my account just yet. I intend to live.

With all our love,

Peter & Jennifer

Posted by Peter at February 2, 2005 01:04 PM

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