Our latest update is below but first the part I never expected I need to write: we need help.
So here goes:
Dear family, friends, people who love us,
We could use your support.
- We could use some more get well cards.
- Phone calls are a bit too much right now but a simple voice mail on Tad's phone telling him how much you love him would be wonderful.
- Home delivered meals once in a while to give me a break would be so appreciated: http://www.dinewise.com/, or a local place http://www.freshprepkitchens.com/menus.php?page=menus
- Gift certificates at our local spa for myself would be such a welcome gift:
http://www.teahousespa.com/about.htm - I am exhausted.
- We could use a small slush fund. We mostly have money to cover everything. Tad's insurance is really good - but there are definitely more expenses now than before. For my friends with some extra cash, can you send a check?
- If we get through the next phase - we will need to spend a lot of time in Seattle -- we'll need miles if you've got them. But til then - we'll take this one day at a time.
When Tad was first diagnosed people by the dozens insisted, "If ever you need anything please ask." To be honest I never knew what to ask for til now.
The most moving times for us are when people reach out and express love and support.
Thank you from the bottom of our hearts.
Now a (crazy) update
Tad is presently taking two medications: these are slow-acting chemotherapy drugs designed to stop the leukemia that couldn't be taken down by the usual, intensive, in-patient chemos he received last year.
Decitabine was first used against this kind of leukemia and showed results in early 2009 - Nexavar was found to be effective against his form of leukemia in June of 2010.
He was diagnosed April 9, 2010.
So in essence he is being kept alive and possibly being cured by two meds that weren't really being used for this disease just three years ago.
Such is the nature of inventions - suddenly something that wasn't there appears and changes everything. Our human brains take time to adapt to and make room for new realities.
Two days ago I spoke to our local doctor's team here in Santa Cruz because I needed some support on pain management for Tad. Before getting back to me they decided to call his cancer team in San Francisco to get more information on his health.
They called me back dumbfounded. The oncology nurse told them the EXACT opposite of what they're telling us: the medicine he's taking is not making him better and the symptoms he is experiencing which we believed to be caused by the chemotherapy are in fact caused by leukemia. Though the meds are hopeful he doesn't have much time to live.
Just last week when we sat in her boss's (the oncologist's) office he told us that for the first time in a very long time there was no visible leukemia in Tad's circulating blood - a very promising sign that the combination is working.
After a long night with no sleep, a "tsunami" on its way to Santa Cruz, several phone calls and some serious back-peddling from the nurse I came to the following conclusions:
- the situation is indeed dire - he could die at any moment
- we are using a last-ditch effort medication combination that may work and may not and with which UCSF is not comfortable at all (there seems to be no documented evidence of this combination even if each of the two meds has shown excellent and unexpected results).
- Tad is at high risk for anything that creeps and crawls
- the oncologists talk up the good points when they converse with us
- they talk up the scary disaster potentials when they converse with other professionals
- they work in a fear-based, litigious culture in which it is customary to share the bare minimum with patients and family
- thus when they shared the disaster scenario with another professional (who happens to adore Tad and has cared for him for years) they couldn't possibly imagine that it would be shared with us.
I once interviewed a medical historian for a radio show I was producing at the time. He told of how in 1982 a doctor from the illustrious Mayo Clinic called the Centers for Disease Control and said he had a patient who had all the symptoms of HIV. The only problem was the patient was a heterosexual female. The doctors at the CDC's told him: "That's impossible. Heterosexual women can't be infected by HIV".
Scientists live in an evidence-based world. They are taught to not have hunches. In order to survive their they must have two strong streaks: a) detail-oriented to the point of being obsessive-compulsive b) self-confidence to the point of being narcissistic.
As a man who listens to intuition and hunches a lot, I can almost date the moment when they lost hope and began to pull back.
As a man who was told for years I was going to die and then one day a drug came along and saved me, I am able to hold hope. We can guess at the future with lots of certainty but she can always surprise us.
Today it seems our difficulty lies in being cared for by people with very little imagination and thus not much hope.
Tad is in a lot of pain, has lost weight, is exhausted, has torrential fevers each night and yet is still smiling, joking, keeping up on certain TV shows and on the various plants poking their heads out of the ground in the yard.
As the sweet nurse at the local hospital said to him this week with tears in her eyes: "It's so easy to love you because your eyes of full of love."
I am down in Santa Cruz nearly full-time now slowly building a community and a cluster of wonderful regular rituals for myself: weekly walks on Seabright Beach with Ron, short walks to Peet's for coffee, bike rides to West Cliff to watch the surfers, meditation at the nearby Zen center.
I continue to prepare for my board exams though less ardently. It's been difficult to focus of late.
This week or next Tad will be getting the fourth round of Decitabine - this is the round at which it attains its full effect since it was designed to be used on elders with this form of leukemia who are too frail to get big guns chemo. We're hoping it will continue to suppress the leukemia and his immune system will grow back.
If it doesn't we're told there really aren't many options left.