Well... clinging to hope

Choosing the temperature of the air being
pumped into my hospital gown.

Had the endoscopy and was disappointed. My surgeon decided once he was in my digestive tract that a stint wouldn't stay in place. So nope. No relief from the food hell I'm presently in. He strongly encouraged me to get a feeding tube set up. :( I said no. I'm going to try try try to eat enough when I can eat to maintain and gain weight. And I hope that when I start the immunotherapy drug the tumors will shrink and lessen the pain/pressure. Shall see. Family and I are thinking on creative fatty foods, especially drinks and soups. Shall see...

Serious me... Just a had time smiling at a hospital...

Ever see a hospital gown 

I honestly did melt down for a while last night going through doubts and regrets over my stubbornness and how the feeding tube could have been put in during that procedure... money, going thru the procedure again, etc. Oh well. Debating and hoping still. Shall see. Hoping for that immunotherapy to help me... trying my best to stay positive. Might give in eventually to a feeding tube but perhaps one that is actually through my nose vs. another incision/tube sticking out of my body.

Still heartbroken by cancer taking special people's lives and impacting other people's lives. Made the mistake of watching a inspiring but upsetting movie- The C Word.
http://www.imdb.com/title/tt3568218/

So there's good things happening lately...
1. My husband got a job and begins next week, hooray.
2. My parents are supporting us for a few weeks with our kiddo while we transition day care situations.
3. My son was just accepted into an after school care program that will give him a lot of practice in Mandarin, thrilled since we knew that his knowledge was fading quickly since he didn't have any new practice in talking Mandarin in months. He starts in November and is open to the classes, phew.
4. Soon enough I'll get to go on immunotherapy that will hopefully knock out these tumors... I know it is a stretch but miracles happen, every day.

Hoping, believing, and loving every day I'm alive, even the tough ones...  thanks for journeying with me...

More hope, yes thank you, immunotherapy time is coming

At the technology/Future Ready Conference on
Friday. Had to wear my shirt to show that I'm
balanced between technology and print materials.

So, something happened today that should have occurred four months ago. But I've accepted that we're simply here now.
I saw my new oncologist today.
Got very clear, honest opinions from her. Received hope, hope, hope.
My husband and I walked away saying, "Yes, this is what we need."
Shall see about that one immunotherapy drug that connects to my biopsy/Foundation I testing. It might take some time to get approval for it. My new oncologist is willing to have me get that still. BUT she's working now on getting me on what I wanted to get on 4 months ago: Nivolumab. An immunotherapy drug. It is the one that is in a phase II study for metastatic cervical cancer patients.
 http://www.chemocare.com/chemotherapy/drug-info/Nivolumab.aspx
https://www.mskcc.org/cancer-care/clinical-trials/15-116
She wants me off of Avastin. Said that it isn't really viable on its own and she doesn't find a need for it in conjunction with Nivolumab. I'm honestly thrilled with that.

I am hopeful.
I am grateful.
I am relieved.

Avastin with blue planes? afterwards. The nurse got
a lecture from me and was much more careful and
aware of what went wrong with our last session.
She used a heating pad and did the "drip" on a
different vein. No new bruises, phew. 

My brain MRI led to nothing new (thank goodness!)
My PET scan led to not too much new, although apparently I had some time of a rib fracture on my right side?! Odd information but makes sense where I was hurting for around 3 months on my right side after surgery last August. Apparently there's something that lit up on that side but shall see. My oncologist was not concerned. It wasn't highlighted as a concern.

I'm hopeful.

I do have to go and get the endoscopy on Thursday. Shall see about pain afterwards. Not thrilled. Shall see if the stint is put in. The gastro-enterologist is concerned about the fact that I got Avastin last Friday. He's not sure if I will heal well if there is any cuts internally. Shall see what he decides. I just want to swallow consistently again. I'm on Prilosec which seems to have eased some things in the morning a tiny bit- less throwing up incidents, but still having issues overall. Getting food in as much as I can but I'm now down to 118, sigh. At least it isn't more, I guess.

Bridge on our way back home on Hwy 101.

Friday was a bit busy with a tech conference, a chat with my oncologist during one break, Avastin treatment, and then meeting up for a carpool down to Coos Bay. My friend and I chatted all four hours on our way to Coos Bay, so wonderful... The doctors on Thursday had looked at me with raised eyebrows when they heard my plans for the weekend but I had faith that I'd planned things out well enough, and I think I had... I actually was able to get to the conference in Coos Bay and present on Saturday. I took a lot of breaks that day but really enjoyed every minute possible. Loved meeting up with educator/school library colleagues from around Oregon and also some beautiful, inspiring author friends as well. So many wonderful hugs exchanged, filled me with such happiness... Overwhelming a little bit, but in a good way. Sunday I slept and rested and rode home with my lovely friend who was fine with a quieter Debbie and an audiobook.

So... getting thru the days. Looking forward to a few non-medical, more work focused days. Hooray for them.

Thanks as always for journeying with me.
Here's to hope.

I loved seeing this blooming still...