In contrast to yesterday, today was moderately uneventful. Far fewer procedures, far fewer doctor visits. Probably some of what we might come to expect for a weekend day spent at UCSF. Jeff got to read a book with Stella and color some dinosaurs. That was awesome.
When I was thinking about titles for this post, a close second to the one I went with was, "The Waiting Is the Hardest Part" - which you have to wail like Tom Petty while reading to get the full effect. But here's the deal, and the explanation for the title I chose.
On Wednesday, the doctors - mind you the best in their field - were quite certain Jeff had T-ALL leukemia or lymphoma. Translation (for folks like me): blood cancer, in T-cells. Then, as of yesterday (Thursday) afternoon, that was in question and for a brief moment there seemed to be a chance that he had two DIFFERENT types of cancerous cells. Fortunately, Occam's Razor prevailed quickly, and at the end of the day yesterday, it looked like the flow cytometry (laser test) results would confirm a B-cell leukemia diagnosis.
Well... it turns out that Jeff looks like a horse: he has four legs, a majestic mane, a swift gallop,etc, but if you describe him with just those features, you miss the fact that he is no roan or palomino, but is striped and exotic. He is... a zebra. (This is Jeff's analogy.)
The reason my dear husband is so similar to a zebra is that, weirdly, the flow cytometry results came back totally normal. This suggests that the cancer cells are fragile and when prepared for the flow cytometry, the cells got broken up by the laser and therefore couldn't be identified. So whatever cells were left were normal. As a result, those pesky, nasty cells are still evading full detection. Now, the docs are not quite sure that a B cell process is the culprit after all. We are back to square one: might be germ cell cancer, could turn out to be a weird variety of B or T cell leukemia or lymphoma, could be a sarcoma. They are going to stain more cell samples, which takes time, but will provide a single diagnosis. We should know by "Tuesday or Wednesday."
My reaction to this news was pure anger. WTF? Seriously. I would really, really like to know what this is. The brightest oncologist/pathologist brains are throwing their brainy brainy waves at all of Jeff's results yet days into this ordeal, we are still in the dark. This was not my best moment of the week.
But, calmer minds prevailed. Thanks primarily to Jeff's incredibly rational and even-keeled logic, Emily's persuasion, and Ricky's help, I now understand (and actually even believe) the following.
- Waiting for the right diagnosis is not causing any detrimental delay in treatment. All of Jeff's labs are good. He actually even feels pretty well. Or not much worse than he did before last Tuesday.
- There is a chance that the ultimate diagnosis will have a better prognosis and less arduous treatment protocol than the ones we were moving towards previously.
- Starting treatment that is tailored for his disease is obviously best.
So I am now moderately calm again, and throwing all my energy into hoping and praying for the best possible diagnosis (see #2).
I will say this, however, so I can rant a bit more. Doctors SUCK at deadlines. SUCK. This is hard for me to understand as a defense attorney. Of course Plaintiffs' counsel can get away with pushing dates back, but if a brief is due, or if a discovery cut off is coming and you miss that deadline, you are screwed.
Now I realize that we are dealing with living cells here, nefarious, unusual ones to boot, and testing processes that take time, and hospital scheduling, and the list goes on. But I cannot get used to these delays. Thus, I am resetting my expectations, per the advice of many doctor friends and kind nurses. I am now expecting more news by say Thursday or Friday of next week. And that is why, my friends, the "waiting is the hardest part." For me at least.
In terms of where to send your thoughts and prayers, please pray for Jeff that he would rest and feel well. Pray for the doctors that they would figure this puzzle out. Pray for Stella - she is sad and misses Jeff a lot - especially at bedtime. And pray for a happy ending to all of this.
I saw this one piece of calligraphy on Jeff's floor today and it resonated, so I'll sign off with this:
Cancer might rob you of that blissful ignorance
that once led you to believe that tomorrow stretched forever.
In exchange, you are granted the vision to see each today as precious,
a gift to be used wisely and richly.