January 28, 2011

Well, here we are a week after the bone scan and blood tests, and I’m doing the promised update. And that’s where the story begins. Yep, another story. We sat down and Dr. Smith started off with the usual hellos, how are yous, etc., etc. Then we got down to business. He said it appeared that this scan was somewhat worse than the last one and he went to pull it up to show us. (All this was sent to him by the radiologist, understand.) WELL, the radiologist had compared last week’s scan to the 2008 scan–the first one. Not the 2010 scan, which was 6 months ago. Everyone simultaneously said that’s why it looks worse. We knew that! In other words–we have to wait until he can pin down the radiologist and go over that one for a good comparison. sigh……………..Pretty frustrating. Oh, and the lab didn’t sent back the tumor markers. They did them (Tiffany called to doublecheck), they just didn’t send it over with the rest of the results. Thinking I had a cloud hanging over my head today.

The visit was not a total loss, though. We had a good talk about future treatments, a newer hormone therapy treatment option out there (there are updates in treatment all the time), what type of chemo I would go on if and when needed, and the course of events. We also got to see the scan and see where the spots are on the skeleton. Pretty much where I thought. The back, (we all knew that), left shoulder (explains pain in left arm); skull (which he said is not problematic on the whole–just some soreness, which I have when I lie on it wrong); and pelvis. Wouldn’t you know the lower back and pelvis are on the right side and the shoulder spot is on the left? Makes finding a comfortable sleeping spot challenging at times. Heating pads are still good. They do ease the soreness. When he asked about pain, which is a big indicator of things, I told him the severity is not worse. However it’s more persistent. And certain chairs are definitely uncomfortable. I take more meds than I used to–even though it’s still relatively low dose. I also reminded him that the pain is worse in cold weather. So hopefully — if spring ever comes — it will be better.

OK, so no real results to share today. If there are no significant changes I might remain on the tamoxifen for a while.

The waiting can be the hardest thing to do. I have determined that this whole thing is as hard mentally as it is physically. It wears on the attitude and stamina as much as the pain does. If you know someone going through any kind of chronic illness, please remember that. It’s hard to express what that means. It’s something that’s always with the person, like carrying an extra backpack around all the time. You can’t put it down, you can’t leave it anywhere. You have to hang onto it. And sometimes it makes you cranky that you can’t put it down or store it somewhere for a while. Unfortunately that’s when the people closest to you feel the anger for having to carry that burden. You know it’s not their fault, but you  have to lash out at someone. Good friends make that burden easier to bear. And all of us dealing with chronic illness appreciate the patience and understanding. Remember we don’t mean it. Well, ok, most of the time. (sorry, had to sneak in a little humor).

Well, we wait some more. We should have news next week. I know, you’ve heard that before. But this time we really should have something. Meanwhile, thank you for continued prayers and support. While I felt pretty “crappy” when I left the doctor’s office, I feel pretty good tonight. It’s all a matter of time and perspective. Oh yeah–and talking to some good friends who gave comfort.

Love and good thoughts to all. And everyone enjoy the nice weather this weekend. I think it may be a snow-free weekend for a change!