Friday, July 31, 2015

Glimmers, noticing them

Tuesday afternoon:
Having glimmers of hope here and there.
Talked with a oncology nurse who is also an advocate about my case. It was enlightening.
I learned that I might not have to go thru a study to get the immunotherapy drug I'm interested in.
I learned that I might be able to get financial help to take the immunotherapy drug I'm interested in.
I learned about genetic testing/Foundation I testing to analyze exactly what is going on with my tumor(s) especially after a second cancer diagnosis.
Link to info on Foundation I testing:

Talk about a turnaround.
I talked with a radiation oncologist today and appreciated every minute. Didn't expect to say that, but I did.
We talked about many things.
The big thing that resonated for me was that she would not want to radiate my tumor area until a year has passed from the past radiation treatment site. A year. Yes, that means the tumor is growing and worrisome, but a break from radiation. I can fully accept this.
She said if there was an increase in symptoms from the tumor then she would probably change that plan- symptoms would include a dry cough, blood cough, obstruction leading to a collapsed lung...

She plans to refer me to a genetics counselor. She said "Honestly, any time a patient has more than one cancer diagnosis, we send them to a genetic counselor." Ok, sounds wise to me...
I appreciated knowing that it is highly unlikely that I'll be dealing with an operation anytime soon. Instead I'll probably be dealing with the following things:
In August:
CT with adrenal protocol to figure out what is going on with my adrenal gland
Tissue biopsy for my tumor in my chest
Other possible tests...
In September:
Possibly another PET scan
Genetics counselor

Watching Highly Evolved Human episodes always makes me smile. Appreciate the perspective... This time he shares about how having a job was so liberating in the middle of his chemo treatment. I get that. It wasn't good for me to be home for so many months... I love being around other people and having a purpose beyond being a "cancer patient"...

I went to a link today that is a "why not?" one: blue water:
Looks like a healthy way to have a different type of drinking water! Thanks for the heads up about this Lenore! :)

Friday more thoughts- 
Ok, a few thoughts and communications have occurred.
The board met and talked about my case more.
They said that the adrenal gland and lymph nodes will be their focus presently. They want to get a biopsy of my adrenal gland and do a mutational analysis of the cells.
Then I will need to meet with a medical oncologist who wll assess targeted therapy options for me (chemo). They might want to assess whether the adrenal gland needs to be removed.
I'll also eventually see a genetic counselor (at the end of September, nothing seems to move quick here to be honest, ech.)
I'll also see a research medical oncologist eventually who will be analyizing the mutational analysis results from the adrenal gland biopsy.

Their big question is what the relationship is between the tumors- cervic, breast, lung, lymph nodes, adrenal gland... I feel like quite the case study.

Thanks for journeying with me...


  1. You're welcome :) ! Why not is right! Sounds like you have a lot more Western medicine options and strategies/trial studies in Portland than in Hong Kong. But there, you had more Chinese/Eastern options. Thanks for sharing. Much love and heaps of healing thoughts your way. XXOXOX

    1. Waiting for the bottles to be delivered! :) Many hugs your way.... xoxox

  2. The glimmers are the best part. <3

  3. So complex, such a challenge to keep it all straight and to coordinate doctors and specialists. . . Beaming an extra seventy-nine bazillion gallons of calm and loverino to you. . . xx

    1. Thank you, it is a bit of a messy thing to track... :)

  4. Hello Debbie, some interesting news to follow with you and all sorts of avenues. Love hearing about the positives - patience and calmness so with you on your journey. How are the boys?

    1. The boys are doing good- kiddo knows how to ride a bike now, thrilled!! :) Much love to you, miss you a huge amount...

  5. I agree with Gae about glimmers. Those glimmers are what keep us going. Thank you for sharing with us. Always happy to journey with you. Sending you hugs, love and lots of doggy kisses from Xena.

    1. Yes, glimmers are what keep us going. Love and hugs your way and snuggles with Xena!!