Queen Deb

“The Real Work,” Standing by Words by Wendell Berry

It may be that when we no longer know what to do
we have come to our real work,
and that when we no longer know which way to go
we have come to our real journey.
The mind that is not baffled is not employed.

the impeded stream is the one that sings.

I like that last line. The impeded stream (with boulders, for example) makes the best sounds. Challenges sometimes make us sing. Thank you Penny Ptschantz for sending.

My work now is to decide on my treatment. Dan says I’m oligometastatic which is an exploratory term describing patients with a limited number of metastatic sites and lesions who might have the potential for a longer disease-free survival period.

I am metastatic but it’s not all bad. My doc in conjunction at Sarah Cannon interviewed by Good Housekeeping recently on metastatic breast cancer. https://www.goodhousekeeping.com/health/wellness/a31668081/metastatic-breast-cancer-facts/

Not crazy about 27% survival rate in 5 years but hoping my lack of metastases will give me more time.

I went for two important scans Monday. A whole body bone scan and a cat scan in Nashville. All in the same morning. Ugh. Got results late Wednesday after I called. They were reluctant to give to me without a doc to go over. I said, “my husband is board certified radiation oncologist,” and they relented. Also I told them I needed to know results to know whether to stay on trial. (Chemo every week and 4 oral Rebastinad pills daily.) According to PA, CAT scan unchanged since June and bone scan still lights up on t-12 but that’s because I got treatment there on July 1 and it’s probably healing from blast.

if scans had shown my cancer had progressed I would try the new fda drug sacrituzimad or some other SOT drug. I’d really like to get the line of lesions on my left shoulder radiated but can’t do that if I’m on trial. Experimental drug doesn’t seem to be wiping them out.

Who knew this could be so tricky? In retrospect I would have made other treatment plans in past, so I don’t want to mess up now. My life hangs in the balance.

I like my new title as oligometastatic. It makes the think I’m royalty haha. (Reminds me of oligarchy. Same root meaning few.) So I’m embracing it.

You may call me Queen Deb. Certainly I’m Queen of Tnbc treatments. Dan doesn’t know anyone who has gotten so many radiations or chemos.

Let’s just hope I’m not royally screwed by making bad decisions.

Thanks for reading and your support, friends!

I’m on left a few years ago (2014) with friend Steph on right.