Last week Tad developed a G.I. problem and we had to have an appointment with the big Kahuna at UCSF. For the first time -- and in a fashion that appeared to be coming out of left field -- he began to introduce end-of-life language.
This seemed incoherent because he was telling us that the slow-acting chemo is actually doing its job of keeping the level of leukemia in check and quite low (around 7%) in his peripheral blood. Also in the same conversation he talked about the promising outcomes of Nexavar (the other name for the afore-mentioned Sorafenib) - a new med we are trying to get our hands on which was discovered to be effective against this particular form of leukemia just last year.
Not surprisingly Tad and I walked away from this conversation with different conclusions and after a few days finally called the hospital to get clarifications.
In a word here is the scoop:
- he is basically living with next to no immune system and could get a life-threatening infection at any time
- the leukemia could mutate at any time causing the chemo to become ineffective very rapidly
- he could start bleeding at any time and not be able to stop.
In essence - the second-to-last ditch med (Decitabine) is doing its job but it needs four to five months for its full effect. And the last-ditch med (Nexavar) is our last hope but hasn't been started and WILL have side effects.
Of course Walgreens has been pussy-footing around with the Nexavar script for over 10 days. When we finally took things into our own hands we discovered that in fact the manufacturer will only work with one pharmacy and it is not Walgreens. (You'd think Walgreens would have noticed this instead of just saying "It should be here any day now".) So yesterday, while getting a blood transfusion in our local hospital Tad called both entities and began to fix a corporate misunderstanding that has gone on for nearly two weeks.
The original script was actually written in November. It went through two insurance refusals first.
(This is just another of a string of mis-communications and mishaps we have had to manage in this piecemeal healthcare system that Congresswoman Bachmann just called "the best in the world" in her response-speech to the State of the Union address. Clearly she doesn't get out much. I can only imagine how complicated it gets for peoople without health insurance.)
I have just resigned from my two biggest volunteer stints and am living in Santa Cruz nearly full time - while still preparing for licensing exam number 2.
More than ever I am aware of my difficulties asking for help - or more precisely identifying what or how to delegate to others.
Lately Tad has been confused and in a lot of pain - the meds he takes for the pain make him a bit loopy and out of sorts at times. For the first time this week he was not able to drive himself to the hospital for his every-other-day intake of fresh blood. It appears to have been due to a medication mistake.
He and I have begun talking about having reminders and possibly people around him to help out - a notion he is not comfortable with. We've also begun our own painful discussion about what to do with his belongings and his ashes. Last night I cried myself to sleep.
Here are two of my favorite astrology columns for Tad this week:
1) "Are you concerned about finances, reviewing cash flow, considering consulting an advisor for help with taxes, assets, resources? Do not remain silent. Have at least one person you can speak with. Also, it’s time to consider end-of-life (you are not dying) preparations, so those who remain here on Earth know what to do. What do you want done after you die? This includes resources."
2) ""Turning toward the storm cloud, I lost sight of the bird." Let this haiku-like poem by Julius Lester serve as a cautionary tale, Cancer. You're at risk of getting so fearfully fixated on a storm cloud that you may lose track, metaphorically speaking, of a rare and beautiful bird. And the thing is, the storm cloud isn't even harboring that big a ruckus. It will pour out its flash and dazzle quickly, leaving virtually no havoc in its wake. That's why it would be a shame for you to let your perverse fascination with it cause you to get separated from a potential source of inspiration."