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:
http://foundationone.com/docs/FM_SpecimenGuidelines_2015-03-17.pdf?__hstc=197910000.ca54bd200688390fb3cfffed497960ad.1401198872498.1432697851762.1432747722833.28&__hssc=197910000.2.1432747722833&__hsfp=196914911


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:

http://beforeitsnews.com/alternative/2015/07/blue-solar-water-heals-the-body-and-spirit-here-is-how-to-make-it-3191218.html
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...

Roller coaster day

Prepare. This is a ranting one. Not so happy, positive.
Well. Apparently, one good way to make me cry and continue making me cry is to starve me for half a day and then request that I pay exorbitant fees on my own immediately. When I clarify such a request, tell me that if I don't agree to pay I can postpone all tests and treatment until I do agree to pay... that'll do me in.
The new receptionist at the clinic said, "Oh I feel so sorry for you." - My response? "Don't use pity on me, that isn't helpful and it makes me angry at you. I don't want to be angry please." She said, "Oh, I know." - do not tell a cancer patient that you feel sorry for them. Should be a lesson day 1 with someone dealing with them all day at a clinic...
I'm a bit of a nutcase when I don't have food consistently through a day. I'm quite good at feeding myself. Even through chemotherapy, I've eaten. Less some days but overall, I've never missed a meal or snack. So, when I got a call this morning that I had to fast before a CT exam this afternoon, I was surprised... wasn't told about this on Friday. I also forgot completely about the needle in the arm contrast that I had to have during the CT exam. *Think I would have handled it better if they'd told me info when I received the appointment paperwork on Friday. *Radiologist cancelled the MRI, said that my PET scan from December and the CT scan would be enough.
Apparently, another really good way to make me cry is to come at me with a needle and request to put it in the hand I've had chemo treatment in. That did me in quite nicely. He put it elsewhere.
Finally, another good way to make me cry is to be a kind sweet lab technician who knew me during the past two treatments who pats me on the shoulder and tells me to relax... yup. That'll do me in... Oh, and having to interact with my radiologist? Just icing on the cake. Him asking me to sign a release and specifically checking if I'm "comfortable" with the statement? No. I'm not comfortable with you telling me all the side effects and risks in a statement, not comfortable at all thank you. But I am willing to sign what I need to for treatment...
Today, the morning was lovely enough on an empty stomach... got to teach, run a battle of the books meeting with my students, and deal with paperwork and budgeting... but this afternoon at the hospital completely blew. From the moment I walked in until I dealt with further complications with billing at checkout. Glad to be home. Glad to have someone to call about the extra fees that I find questionable that I had to pay a portion of today... Glad to have time with my wonderful husband to vent before the kiddo got home. Glad I had food to eat...
I'm thoroughly embarrassed with how I handled today. I do not like emotional outbursts. I do not like crying. I barely ever have experiences like this. I now need a rest, feel like a little kid who needs a nap after a temper tantrum.
Tomorrow I begin official treatment at 4:30pm. Blech. I've asked that my husband be there for this first treatment in case there are further surprises and billing stressors. I'm ridiculously emotional this third round. Feel like I'm experiencing a smidge of what people experience with PTSD, post traumatic stress disorder, because going back into that tube for the CT scan today made me sob a little. Thinking of what I can distract my brain with for the 30 treatments ahead. Knew this would be hard. Knew it would suck. Sigh.   *Thank you to my beautiful sister for her plan to share special stories each day of treatment... quite touched, there's one thing to think about!
Talk about a roller coaster. Up down, up down... Glad I teach all day tomorrow. Love classes and am excited about what we're doing in the library.
Thanks for journeying with me...

Hoping and wishing with cranes and more

I love student friends... such beautiful people. I know I've touched many children through the years but they've been darn impacting and special to me as well.
Yesterday I received a very large, light box. It was decorated outside with loving messages and stickers. I opened it and was astounded. Cranes. 1000. Cranes. A wish created and given to me by former students and parents from my old school in Oregon. Wow. I am overwhelmed. (If the beautiful people who made this are reading- thank you, thank you, thank you.)
It is said that friends or loved ones fold 1000 paper cranes to wish a person recovery or a wish for a long life... I have read and taught about the beautiful story of Sadako and the Thousand Paper Cranes by Eleanor Coerr. This book has inspired so many people through the years.

I feel a wish granted, you know? When do you feel that blessed and lucky? I'm so touched. There have been people who have taken action and reached out with words, time, gifts, energy, and so much more since last August (and many before with my other two cancer battles) and I'm feeling darn lucky and loved. I even received beautiful threaded cranes before from parents at my present school...


A few years ago I featured a former student who is running a program called Cranes of Hope in Oregon on my Styling Librarian blog. She's so inspiring. She is still collecting cranes from the mail, through workshops and more and delivering the cranes to oncology centers around Portland and Beaverton and giving hope to children and adults going through cancer treatment. Patients pick up a crane each time they go for treatment. Here's my blog feature from 2013 - featured in June, I was diagnosed with cervical cancer that fall...:
http://thestylinglibrarian.com/2013/01/15/styling-librarian-features-cranes-of-hope/
I've thought about Niasha's mission, focus, and beautiful actions through the years and even just last week was thinking that I should be keeping my hands busy by making cranes I could send to her and even lead a crane making workshop with students during lunch in the library. Never considered being the recipient...  And then I receive this gorgeous box of cranes. What a gift.  **Please consider following Niasha on Facebook- Cranes of Hope and making cranes for her. It's a powerful mission she's accomplishing with many supporters... See links and such on the blog post above.

Today I brought my son to Sunday school and a former student (I helped there for first two years in Hong Kong but resigned this year since I had operations/chemo+ and no clue what I could handle) came over to me. "Debbie. I would like to help. I have the healing touch. Have you heard of Reiki?" (So my former students heard about this round, I kept things very quiet with the other two...) I said "That's very sweet, thank you. Yes I have heard of it..." For the whole community service she had her hands on my shoulders sharing her energy and hope with me. Beautiful. Touched. So sweet. And I did feel warmth, energy and was quite grateful. A 12 year old sharing her energy...

So. I'm ending the weekend a little tired after being out most of the day today visiting with friends, hanging out with my son, shopping at bookstores, launching a new book program for kids here in Hong Kong... but so invigorated and restored at the same time... Work/CT/MRI tomorrow. Will push through. I have a good audiobook to help me with the walks to the hospital along with a lovely friend who has offered to walk with me on some days... again, touched.

Thanks for journeying with me all...