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...

5 appointments, 3 days, sheesh

Gonna miss my kiddo when I go to a conference for the weekend.
Just finished a good book with him and quickly are going to shift
to a new one... Haven't missed a storytime with him in a while... Even
the days when I'm coughing and unable to read much, we still have our
time together...

So. Yesterday I had to go get a PET scan done and I took a sick day since I knew I'd be useless at work before the scan since I had to fast for it.
The scan is still as isolating as it is in Hong Kong. Similar everything. Scans suck a little more now since I don't prefer to lay on my back since pain is ridiculously bad after 5 minutes. Having to lay on my back without taking tylenol? Very worrisome. Got thru it all just fine. I'm good at staying still. (Guess I have a little practice with 3 rounds of radiation!)
While I was isolated for an hour letting the radiation seep thru my body for the PET scan, the nurse pulled a miracle and scheduled a brain MRI a few hours after the PET scan.
I hated that MRI. I don't use the word too often but MRI contrasts suck totally. First I'm in a head cage and have to hold still while things bonk, buzz, whir, and shake all around. For 25 minutes. Then they injected a contrast into my poor overused vein and walked away. Nope. Not happening. Had to hit the panic button so that I could sit up and deal with the nausea side effect from the contrast, yuck. Got over it. They said it happens to those who are lightweight... Yup, that's me presently.  15 minutes more of laying still. Had earplugs and headphones on. Once in a while heard classical music. Hmm. Not so fun. Got thru it.
So I had to get both tests done for the new oncologist I'm seeing next Monday.

Today was interesting.
First I met the gastroenterologist and discussed my swallowing problems with him. Why not just schedule the stinking procedure? I'm not sure. Oh well. Next Thursday or Friday I'll be going thru an hour long procedure where they'll possibly put a stint into my esophagus. There's consequences, of course. It could slide. Go down into my stomach. It will likely make me hurt for 2-3 days as the stint expands. He only wants it in there for 6-8 months. Said it can create problems if it is there longer. Said that I have to sleep at an angle because I could have really bad acid reflux since there's no barrier anymore once the stent is in place.
Found this brochure about what to do after the stent is placed...
https://www.bostonscientific.com/content/dam/bostonscientific/endo/general/gastro-specialty/eso_stent_patient_nutrition.pdf

Next I met with my oncologist. Had good conversations with her. We went over the Foundation I results and she found that there was a immunotherapy drug that my tumor reacted three ways to "genomic alterations detected"... so she got permission from me (of course) and is now applying to get it for me through compassionate care.
The immunotherapy drug is called Temsirolimus.
http://www.torisel.com/how-torisel-works
I know it is normally connected to renal cell carcinoma. It is not on my oncologist's normal radar. She said it was very good that we had the Foundation I testing because it brought to light a drug that has a little promise. It is in a 2nd trial trying out treatment for gynecological cancers/cervical cancer and has shown promise. I'll take that hope.
https://clinicaltrials.gov/ct2/show/NCT01026792
Shall see how long compassionate use application takes. I'm still seeing the new oncologist on Monday and also another oncologist on Thursday.
We also discussed other things, liquid versions of medicine, especially tylenol... Unfortunately the Tamoxifen I take is liquid form with the flavor of licorice added in, YUCK. I HATE black licorice. I HATE the seeds as well... So I'll crush that pill.
Handed her my paper work for my Advance Directive... it came in the last Hong Kong shipping package... Good to get it sorted out and make sure the hospital knows my wishes.
Grateful a friend is helping me with paperwork and such... I'm in the process of gathering what I've already got... wills, etc.

Eating is such an issue.
Had to fast yesterday for the PET scan and afterwards met my mom and had a delicious sandwich. Unfortunately around 20 minutes into my slow eating process things got... blocked up and I couldn't figure out what to do. Had to lie down at the restaurant in a booth. Blech. Took around 25 minutes or so to recover but felt like crap and barely had any interest in dinner. Needless to say when I weighed in today I'm down to 119.5. :( Very unhappy about that but will continue to try. I'm drinking protein shakes thanks to my husband making them for me in the mornings. I'm slowly going about the days. Barely able to drink a mug of warm lemon water first thing in the morning. So odd to adjust to. But I'm trying. Dinner time is a little better. Today at lunch I had delicious soup but could only get in the broth. Sigh. Shall see. Got noodles, a little chicken and more noodles in me at dinner tonight. Better than I've eaten for a few days. Thanks mostly to my mom's cooking!!

Have another Avastin infusion tomorrow. Grateful my sister is going to be with me. I love my family. So much. I'm so grateful to spend time with them. So happy I'm close by now... Makes it so apparent to me how much I missed them last year... and how many people helped be my family in Hong Kong last year. I miss those beautiful, supportive friends...

Went to the best yoga instructor ever's class yesterday. Appreciated her advice on how to help my back, throat and eyebrows. Working to not raise my eyebrows so often. I never noticed how much I use them til now and she pointed out that it adds stress that's unnecessary. Also learned about some chair poses that should help me, give me more energy... Boy I've missed her classes. Happy to sneak in one again...  after the PET and MRI it felt good to do a healthy action.

Gotta do a crazy face too mom! :)

Thanks as always for journeying with me...
Finding promise.
Holding hope close to my heart and being patient, very patient with myself.

A Little Hope? Yes, thank you.

Loved special sister time... My curls are starting to poof out!
Love each and every one of them.

Had an ok day overall. LOW energy. Caught myself falling asleep during something I found fascinating, frustrating.
Work was ok.
Went to radiologist. LONG appointment.
This is a doctor who doesn't give up.
She doesn't want to radiate any time soon. She really wants to wait since the tumor is exactly where I've had radiation before... she's concerned that the radiation won't work well and will actually further aggravate my esophagus... I understand why she's concerned and honestly appreciate it... even though I also have that attitude thinking, "darn it just zap the heck out of those tumors already!"
I told her how upset I was over the stagnant course of treatment and within an hour she found a new oncologist who is providing me with another bit of hope.
I have to go get yet another PET scan tomorrow. Oh boy. Hate those when it is at noon, takes 3 hours and I have to fast 6 hours in advance. Blech. But at least there's something happening! I also have to get a MRI brain scan soon.
Possibilities for immunotherapy are there. Shall see.
Found out there might need to be a stint placed in my esophagus... will see a specialist Thursday afternoon and find out more about that. Yikes.  Hadn't heard about getting a stint before. Glad to have a doctor who covers her bases and knows what is going on. Saw a scan of my esophagus, there really looks like it is closed up partway down it...
I appreciated getting the suggestion to sleep more at an angle to see if that can help all my swallowing/coughing issues in the mornings. Here's hoping that works. My parents passed me a pillow and my husband picked me up a few more pillows as well. He referenced The Princess and the Pea when we looked at all the pillows piled up...
Really grateful for the appointment. Amazing how much more relieved I felt after the appointment. Give me a little hope people, that's all I ask...
My radiologist even called me later in the evening to fill me in on the referral. Love how she works and thinks, really appreciate having her part of my medical team...
Caught up with my favorite massage therapist the other day, was so refreshing and helpful... Grateful.
Less pain as well.
Going to qi gong classes on most Mondays and even get to see a beautiful friend when I go to class... good incentive. Really enjoying this instructor even though it is very different from my past classes.
Shall see how the rest of the week goes.
Thanks for journeying with me...

PS My love and prayers go to the Traller family. Heartbroken after learning the news that Nathalie died last night. She provided so many with a beautiful light of energy, love and hope. She has touched so many people and will be remembered through future years... The advocacy and fundraising for ASPS and children with cancer hopefully will help future children who have this diagnosis and others. Although noone should ever have to deal with cancer. Let there be much more research for rarer forms of cancer....

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...