Wednesday, December 1, 2010

Like Alice Down the Rabbit Hole . . .

Or How a Day Can Go From Bad to Worse.

The phone rang at 12:15 PM. I picked it up immediately looking first at the caller ID number, not recognizing it right off the bat but assuming this was the call for which I had been anxiously waiting. Dr. K, my oncologist who was away from his office for several weeks and I had a “phone appointment” at 12:20 PM and I thought, hopefully, he might actually be calling a bit early as we had a lot to talk about.

It was not. It was Filiberto, our gardener, who wanted to talk about the next day’s work in our garden. I cut the call short, not wanting to depend on call waiting to let me know Dr. K was on the line.

From that point on, the day and I simply fell apart.

When Dr. K hadn’t called by 2 PM I called his office and after several tries to speak to a person, not just leave a message through the voice mail maze, I heard he was running 1½ hours late because of emergencies. If I had gone into his office and checked in, I would have no doubt been told he was running late, encouraged to go have a bite to eat, come back and check in later. But a phone appointment running late? Well, too bad. Didn’t the person who scheduled the appointment tell me this could happen?

No, but it didn’t matter if they had. Dr. K was unavailable until who knew when and I, waiting for news I pretty much knew wouldn’t be good, finally let go of all I had been holding in, all my fears, my frustrations, my anger at this latest diagnosis and had my first huge melt down. I fell sobbing into the arms of my dear husband who had been waiting with me to speak to the doctor. After helping me gain a bit of composure, he encouraged me to go to the gym and "work it out", which I did and it helped - a little.

When I went through my first bout of breast cancer, the only time I remember crying was before I had even been diagnosed. Three months after we were married over twenty years ago, I felt a lump in my right breast. When the surgeon who examined me said the word “biopsy”, tears began to flow, even though he said he was so sure it was “90% nothing to worry about”.

This being the third time I’ve gone through a diagnosis of cancer, I now believe the worst part is always in the very beginning, when nothing is certain except the fact that somewhere in your body, cells are growing haywire. When there is still no prognosis, no treatment plan, no idea what comes next, these are the most anxiety-ridden, the toughest days of all.

Which is why, when no phone call was forthcoming from Dr. K with this very information which I hoped would somehow put me at ease, help me get on track to fight this “indolent” disease, I fell apart.

Unfortunately, this time with this disease, which I can now refer to with its specific name, small lymphocytic lymphoma or as it is more well known - SLL, I will not have the benefit of any of these things, no prognosis, no treatment plan, no idea what will come next.

I learned this from Dr. K who finally called at 7 PM apologizing for the bureaucratic snafu. Apparently, since he didn’t schedule the appointment himself, which is how it is supposed to be done, he didn’t know about it until he heard I had left messages. But better than the 10 minute phone appointment I would have had with him in the middle of the day, he spent almost an hour on the phone with us, giving us all the information he could, that from the last CT scans, there are no enlarged nodes in my chest area (good news), but that this is a “systemic disease which cannot be cured” (not so good news). There is no treatment necessary until I have symptoms, i.e. night sweats, fevers, anemia, fatigue. How will I know when these symptoms are bad enough to require treatment? He had no real answer for that.

J├╝rgen asked all of the scientific questions about monoclonal antibodies and such. I took notes on this. Mine are: CD 5, CD 20, CD 23, BCL 2 - all positive (not good) but CD 3 and CD 10 are negative (good). He asked about a specific test which would more accurately tell if I have the gene which portends an early demise from this disease or not. Dr. K knew about this but I don’t think it is done routinely at Kaiser. And anyway, do I really want to know this in advance? Know that I might have only 5 years left as opposed to say 15? Not something I can decide easily or in a hurry. I’ll get back to you on that one.

So nothing from the phone call gave me anything with which I might forge ahead on a path to recovery, a plan of action, what to do while waiting for the tell-tale symptoms. All that I’m left with is this floating anxiety. And the knowledge that at any moment I just might have another melt down.

So where is that Cheshire cat with his magnificent grin when I need him?

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