Tomorrow I will descend into a tunnel of unknown length and darkness. I can turn aside from my present course at any time up until 10 A.M. Monday; I can finally reject the oncologists' advice, go home, and consume only green tea, fish oil, and flax seed, or whatever is the favored alternative cancer cure of the moment. But once the poison begins to drip into my catheter, there is truly no turning back; my immune system will begin to die, and then only the stem cells extracted last week can save me.
There is no way to predict exactly what is going to happen next. It is possible that at some point I will become incapable of updating this blog; in that case, I may ask Huong to take over temporarily.
No matter how well or badly things go, what is certain is that I must be kept substantially in isolation from the outside world for some time. Since Huong will be responsible for monitoring my state 24/7, she will share this isolation to a large degree. Her home caregiver role, once virtually ignored by the medical establishment, has gained increasing attention in recent years, especially as increasing proportions of the bone marrow and stem cell transplant procedures have been shifted from inpatient to outpatient, thereby making the outcomes increasingly dependent on the performance of the patients' caregivers. And what has become apparent is that, in many ways, the caregiver's role is more difficult than that even of the patient. In addition to dealing with a person who is in pain and to some degree incapable, the caregiver must continue to carry out all the standard functions required to keep a household running. Many caregivers are overwhelmed by this combination of burdens; many turn out to require treatment for depression at some point.
One thing that seems to help is reassurance that the caregiver has not been forgotten by the members of her support group. Although physical contact may be problematic, contact by phone or e-mail can go a long way towards helping a caregiver to maintain the necessary level of psychic energy; e-mail might be more convenient, since it can be processed at the caregiver's convenience, but the sound of a human voice has its own particular palliative effects. If you consider yourself a member of Huong's network, I would ask you to remember her in the coming weeks. I understand that this will be more difficult than it ordinarily would be, coming as it does during the busy holiday period, which is why I am broadcasting this annoying reminder here and now.