January 30, 2001
The Leap of Faith into the Darkness
Alexandra Andrews, Karen Bailey, Allan Grossman, Martha Hale, Wendy Sheridan
I ask him about trials and he feels that as long as we have another step to go to we should stay on this track.
It's midnight here I can't sleep and I wonder if I'm doing the right thing by staying on his treatment plan. You know the old saying about all the what if's well I've said them so many times. This time it's My Life I don't want to have to say what if. I think you all know what I mean or maybe you don't it's midnight and I do loose it when I'm talking out of my head from not sleeping.
Sorry for just rambling it's just me being me.
Love to all
Of course you are having trouble with What?, Should? We are all so dependent on the art of our oncologists.
Have been very unsettled since the last conference I went to. I realized there are no road maps for our treatment. There are no studies, no trials, just leaps of faith into the darkness.
I try very hard to believe in my oncologist.
We all take leaps of faith into the darkness - I think the only way to light the way is to be an informed patient.
I know that our onc doesn't like to be second guessed but I really don't care. He's one of two oncologists in the Battle Creek area (about 100,000 people) and he can't specialize in breast cancer - he has hundreds of patients and he simply doesn't have the time to be an expert in everything. If Deborah was going to a breast center I'd probably speak less and listen more but someone has to be the expert so I picked me :)
With the help of a whole lot of people like you the journey hasn't been nearly as scary as it could have been. I've seen some mistakes made - if I knew then what I knew now we'd have tried chemo before surgery (Deborah was Stage IV at dx). Maybe she'd still have her left breast - in any case she wouldn't have lymphedema because since we knew we were dealing with metastatic disease there wasn't any reason to take her underarm lymph nodes. Another mistake we made was having her surgery done by a family friend. True, a mastectomy gives the best chance of getting rid of a whole bunch of cancer cells, but chemo beforehand might have reduced the need to just a lumpectomy - Deborah's tumor was pretty large. Right now her tumor markers are in the normal range - maybe she wuldn't have had to have surgery at all (I know this is a fantasy but that's ok).
Oh, well - hindsight's 20/20 and we made the best choices we could at the time. I think if we all look back we'd see things we wish we'd done differently.
A friend of mine was just diagnosed with prostate cancer - and when he asked me for advice I told him that he'd probably had cancer for a long time and that I thought the best thing he could do was become an informed patient. I pointed him in ACOR's direction and suggested he seek out people who had been there - and reminded him that although he was going to feel a lot of people put pressure on him to make a snap decision, as long as he was asymptomatic he could take a month or so, do the research and assist in his own recovery.
No victims here, Alexandra - if someone can't light the way for us we need to light it ourselves. I'm grateful to all of you for helping me find my way when I couldn't see the light myself.
hugs to all -
I realized there are no road maps for our treatment.
Nope, there aren't. That is why this list is so valuable, we are able to see for ourselves just how unique we really are.
There are no studies, no trials, just leaps of faith into the darkness.
That's exactly how I felt when I agreed to the protocol my doctor and I worked out together. As I mentioned, I had drug resistance tests done,which is why I chose not to do chemo/Adria right off the bat, although the honor could have been mine. They tested me for everything except tamoxifen and radiation, the two things I FORGOT to request, and which I ended up doing. Leap of Faith.
Normally after a sentinel node biopsy shows up with micromets, as mine did, the standard is to go in and haul out the rest of the axillary nodes. I also declined this honor, much to the surprise of the rad/onc. What was the use if the positive internal mammary node on my lung artery was inoperable? So we just went with the hormonals and the rays instead of subjecting me to more surgery in the middle of all that nerve damage.
Leaps of faith are trails being blazed in the darkness, which light the way. Faith being the operative word here.
I try very hard to believe in my oncologist.
Let him believe in you, he could probably learn a lot.
I strongly believe that we all make the best decisions we can with the information that is available. Opinions seem to change fairly quickly in this world of cancer and treatment. We cannot possibly predict which of today's hopes may be thrown away tomorrow. We and our doctors are walking many unknown paths - do the best we can with what we know today. I believe that every treatment option that buys me quality time also buys me the chance for a better future solution when I need it.
I just want to be in that future.