True friends, tough information

Today began with my learning something along the lines of the fact that the pain in my lower back was indeed a number of tumors, I have some swelling around my spine that causes concern and there was an odd spot on my brain stem that they hope to look at with another MRI. They ordered that test this morning, and my nurse says to brace/prepare myself for an after-midnight pickup. If I'm Lucky, it will be around 5. If not....

As a result, I ended up speaking with a couple of radiologists and specialists in a number of blood-related cancer specialities, and it seems that what's next in the way of treatment for me.

Then, Sky, Karen, Joan and Val showed up, and I should have known that this meant Business. They wanted to talk to me about an e-mail exchange one of them had had with my primary oncologist that extracted some details I haven't heard but needed to. This, people, is why having several people to advocate for you a such a fabulous idea.

Even when the news is not good.

Seems that the problem I had with my left lung is extraordinarily rare (affecting about 1% of patients) and indicates a very fast-growing, high disease burden. How fast? My left lung could already be filled up again since being drained on Wednesday. It also means that it would be a miracle indeed if I could get my disease load down low enough to qualify for any kind of transplant.

This was backed up by yesterday's MRI, which showed a lot of tumors in a place that had appeared to be "clean" just a couple of months ago. My body did feel as though it took a turn for the worse this week, too--had a moment just a week or two before Linda died when a little voice in my head said, "You are pushing yourself to the brink--careful you don't go too far"). Somehow was able to work through that time, but it doesn't look good for me know.

Oh, well. With the future we may have before us (Tea Party-approved Congress comes to mind), this might not be a bad time to head to Rock 'n Roll Heaven. Of course, I still hope that the docs find some way to rein in my disease, and I'll have time to enjoy life for a good while, Sarah Palin or no Sarah Palin.

We shall see, dear people, we shall see. Monday's my next meeting with my big doc, and Karen and Sky will be here to advocate (lucky for me).

Yes, even though the latest news qualifies as terrible, "What's next?" is still a serious topic of conversation. There appears to be more interest in a completely different chemo regimen, most of it more traditional chemo that could knock the stuffing out of enough speedy S.O.B.s to improve my quality of life. So, there's a chance of some reprieve, but realistically, nothing like the extended remission that seemed so possible before we learned what kind of myeloma I had. Seems that continued treatment will be my ticket to time, nothing else.

I've cried quite a bit about this news today, as you can imagine. Was very grateful I had Val, Joan, Sky and Karen to cry in front of (even if I can't help be embarrassed by it). It took courage for them all to sit down and tell me this news, but they knew I wasn't getting it from my primary docs, and it was important. What friends, eh?

Am grateful too that the reality of the situation did not inspire any "wishful" thinking on the part of my friends, but instead inspired a lot of love, support, and hugs.

Prayers and well wishes are also coming in from outside Boston, so I'm being well taken care of on many fronts.

Love and hope abound, even if a little snark finds its way in here and there. XO, An