QUESTIONS ABOUT MY DEATH
One of a suite of blog entries about the aftermath of chemotherapy and radiation therapy, including brain damage and eyesight damage; a survivor's account of the aftermath of cns lymphoma, non-Hodgkin's lymphoma of the large B-cell variety, in the author's case cancer of the brain and the spinal cord.
THIS IS A PICTURE OF YOUR GOD:
A HUGH COOK READER.
Questions about my death were on my mind when I met with the head of my cancer team, who I am calling Dr Oncologist, on Friday 10 February 2006.
I do not know for a fact that my brain cancer is back. The eyesight problems I am currently experiencing may simply be a little bit of Chernobyl in my head, part of the outcome of the thirty grays of radiation that I received to the brain last year.
But if the cancer is back again, non-Hodgkin's lymphoma of the large B-cell variety, in my case a cancer of the central nervous system, the brain and the spinal cord, then the probability is that I die.
So that's what I wanted to talk to, face-to-face, today without mother, father, sister or wife.
I acknowledged that my questions were premature, since we are still waiting for an appointment for me to have an MRI scan of the brain, which will answer either "radiation damage" or "lymphoma reactivate".
However, I pointed out that this was my best window of opportunity to ask things without my family. Nobody wanted to come along because there was not going to be any news, since the scan, not yet done, is what will supply the next news installment.
I also apologized for asking the questions themselves, saying that being an oncologist must be a very tough job.
To which Dr Oncologist replied cheerfully "I'd rather be on my side of the questions than yours."
So in a businesslike way we went through all my queries in an open-ended session which ended up taking twenty-five minutes, and left me totally satisfied in terms of information.
Dr Oncologist says "I do not have a crystal ball" but, assuming it to be the case that the cancer has returned, then the outcome, without any treatment, seems to be that I can expect to live for perhaps six to nine months, remaining mentally intact during that time, and being physically mobile for most of that time, but probably going blind at some point.
Ending up dying at home, experiencing, toward the end, headaches, nausea and vomiting, and needing to be cared for in bed.
"And what is the mechanism of my death?"
"You become increasingly drowsy and less and less conscious."
Okay, there are worse ways to die than that.
So that gives me a time frame, albeit one that the doctor does not validate: he has no crystal ball. But it gives me an order of magnitude ballpark figure, say six months or more.
We discussed treatment options, and the options are either one or none, depending.
Conventional chemotherapy agents will not be used. To follow radiation therapy with chemotherapy is to produce dementia, and there is no point in undergoing medical treatment just for the privilege of becoming Mr Vegetable.
So there is one alternative.
It is experimental, and may not be available for technical reasons, something Dr Oncologist will research if we find that the cancer is back again.
(He outlined the situational background, which I won't go into here, as he has just given me his first concept of what problems might prevent this resource being used, and he would research the situation properly if the MRI said that the cancer is back.)
My last chance treatment, if the cancer is back, and if I end up getting the treatment, is something experimental which, so far, has been tried only on about ten people anywhere on planet Earth.
Dr Oncologist Googled it and printed me off a PDF from the very first hit on the Google rankings, so a Google for the gadget would get you the technical download, if you were interested.
The gadget to Google is the Omaya Reservoir, a device which Dr Oncologist describes as being "highly experimental".
[Later: the patient misunderstands the doctor. The Omaya Reservoir is a standard medical gadget, not something new and experimental. Probably, at a guess, Dr. Oncologist's intended meaning was that there is little experience in using the Oyama Reservoir to deliver the drug rituximab in cases of relapsing non-Hodgkin's lymphoma of the central nervous system.]
It is designed to administer a drug called, variously, rituximab, rituxan or mabthera.
[Again, a misinterpretation. The Omaya Reservoir is not a drug-specific gadget but something designed to deliver a range of possible drugs into the brain.]
The gadget is inserted under the skin of the skull and includes a part which feeds, if I follow what I was told correctly, into one of the fluid-filled ventricles of the brain.
A drug is injected through the skin into the reservoir periodically to refill it, and the reservoir delivers its dose.
So if I had this thing implanted then I would be looking at my second neurosurgery experience, an operation under a general anesthetic, with all the risks associated with brain surgery.
After that, however, I would be free to come and go. No hospital stay and, because the device is sealed under the skin, no hygiene issues, although of course the injections to retop the vial would have to be done under antiseptic conditions.
"So if I were to get this device implanted, how long would it be until we had the answer, kill or cure?"
But on this point Dr Oncologist had no thesis.
He made it clear that he was going to try to put pressure on the system to get me my MRI, soon, please. And, all my questions about my death having been answered, I left feeling oriented. Feeling that I had the information that I need to plan, to the extent that I can plan.
Dr Oncologist did some visual field tests. My feeling is that the vision is returning in the upper right hand quadrant, the quadrant that has been more or less blind in both left and right eyes, but it's very hard to judge from my subjective position.
Meantime, I am physically fine and am walking an hour a day with no problems. And, being in danger of running a little late for my hospital appointment, I actually jog trotted the last little way.
Some months ago I could not really even jog-trot, not even for a few paces, so the ease with which I jog-trotted today was gratifying.