So, about this rollercoaster I'm on, I'd like a break now and then please...

Logging for a few days.
So. PET scan was fine on Thursday.
Work was fine most on Friday.
I was up most of the night Friday/Saturday.
I swallowed one pill and began coughing/vomiting and couldn't stop all day. Drank tea. Took allergy medicine... meh.
After going thru that, I wasn't thrilled with Saturday. Received a new anti-nausea med I take every 6 hours now. Sunday morning at 1:30 am I started coughing up blood along with mucus. Very disconcerting. This hasn't really ended yet... yuck.
Went to the dr.
Got two bags of fluid.
They didn't know what to do with me.
I had terrible sleep. Couldn't stop panic breathing where everytime I laid down I'd go into this breathing issue. Still an issue during the daytime.
Called to beg to see my oncologist Monday since I had a sub but she's been on holiday so she actually couldn't squeeze me in since she wants quality conversation time about the PET scan. So tomorrow I go.


PET SCAN results... 30 minute wait while my oncologist reviewed results, could have been good or bad, or both. Yep, both. Received "Mixed Results".

The one good: the tumor on my adrenal gland that was discovered in July shrunk a load, she was happy.

The other things, not so happy.
We did decide to stay the course.
I'll try my best to share what's the worrisome stuff:

1. Might have pneumonia, will get an antibiotic, likely liquid, tomorrow.
2. Mediastintum where I've been radiated/have tumor/been fighting/been cut up/operated there, etc.... is growing, more active. Plus found a new tumor area near the mass.
3. Abdomen hasn't been brought up before... could be cancer in there in the lower right quadrant, hmm.
4. Could also be peritoneal disease which is not something new for cervical cancer patients...
5. I have what's called a "Mixed Response" overall to the Nivolumab.

She also mentioned that she just got back from a conference where they discussed these checkpoint inhibitors, like Nivolumab, and how they're just not as straightforward as we'd like... and to stay the course and be patient. Guess I can do this.
She also mentioned that there sometimes are "pseudo progressors" which also she said might signal that we need to give more time.

Well, plugging away, going to be a little quiet and introspective now... Staying positive as I can. Resting where I find time. Working to get better sleep, here's hoping.
Wishing everyone well,
Thanks for journeying with me.

2 more months I'm going to stay this course, shall see. Every other week Nivolumab I believe, shall see!...

I still see me...

I've been thinking about things...
During my quiet times where my body is saying, "No, don't get up yet, you're not ready."
A fleeting thought at one moment this past week was that I felt so frustrated to not be me that I know anymore.
Every once in a while I come across this thought.
I miss my stamina- gotta work on building it up again.
I miss my voice. Sometimes I just can't talk the way I want because I'll go into a coughing fit.
I have learned to accept, adapt and appreciate most of the time.
Then there are other days where I just wonder where am I? Am I still who I was before my cancer diagnosis? How do others see me? I know many many wonderful people have told me I am not just a cancer patient. I am someone who has many interests, passions, and ways I exude energy. Do I still? I feel like sometimes I'm living in the shadow of my past. So. At this time, I had my phone with me and I hunted down a few pictures I liked of myself after we moved to Hong Kong but before my diagnosis. They made me happy. Then I came across that picture I took of myself on a conference day recently... I still see me. I see myself in everything I do. I see myself in my patience I've learned to use more consistently. I see myself in the hope I have for the future. I still see myself in my determined actions and love I share with others. I'm a little wrinkled around the edges some days. Weaker. I need to be careful in ways I never had to before but I'm still me... It was refreshing to have this low moment I could pull myself out of with a little reflection. I did honor the time with a collage of the pictures from before diagnosis and the picture of now. I still see me through all these pictures... I sometimes had low quiet days then too... hunker down and read for the day days... curl up and watch shows and movies with family days, relax on vacation days in the hotel room or in a lounge area...  I love life and appreciate all my memories...

This past week was ok. Saturday was Nivolumab day- was hoping to go to a conference after the infusion but realized it wasn't a good idea... Sunday I got to see a very special friend in the morning and then I rested a lot. Only had work Monday/Tuesday. Was able to work all day Monday but Tuesday was a no-go morning but after a few hours (3) I was able to head in and teach classes and speak for a few seconds at the staff meeting without coughing attacks. (looking into allergy medicine next... shall see if it helps).
Wednesday I woke up shaky... I was really nervous because I was going back to my gastro-enterologist and it was really stressing me out. I went with my parents and son. My dad and kiddo entertained themselves while my mom and I waited a long time for the appointment. I thought there was an infection there, reassured me many times that there wasn't... Hmm. I give the wait to the fact that the doctor cares a lot and takes his time with each person. So when he came into me, he had me lay back after we talked for a few minutes. He started moving my feeding tube. I yelped, cried, asked what he was doing- he was tugging, twisting, and turning the tube. No warning. My mom teared up on the other side of the room. Seeing her tear up made me calm down for some reason... He explained that he was loosening the stoma area. That the clamp that was putting pressure on my abdominal wall and stomach wasn't necessary as much anymore after 5 weeks because there was enough scar tissue there now. After wiping away those tears and giving it a few minutes I could feel a drastic difference. 5 weeks of pain a little more explained. The doctor requested that I start using the plunger in the evenings/when it is harder to feed myself with simple elevation. Then he told me to drink Gatorade thru my feeding tube to get the fluid and electrolytes I need vs. going to get a fluid bag push at the oncologists. He said "less needles is good, right?" I've tried. Finding I'm doing ok. Euch to Gatorade. I miss Pocari Sweat from Hong Kong... a lot. Apparently Uwajimaya has it- shall visit quite soon!

I went directly over to the oncologists though and checked in with the nurse who agreed about the Gatorade and did one bag of fluid... and took yet more blood. My white blood cell count is still up and a puzzle to her. She said I must be just finishing some bug off and need to be patient as I heal.

I was really wiped after two dr appointments and was glad to get home to my husband. He and the kiddo had some fun together after the sweet boy was stuck an entire day from one dr. office after another... even with all my dad's support- no fun... but he did have a "busy bag" filled with books and entertainment...

Love my sister

Thursday I woke up and did my morning feeding routine but could tell it wasn't time to move yet. I pretty much didn't move beyond feeding myself and drinking loads of water til 2pm which was frustrating but I accepted that's where I was at. Eventually I pulled myself together, went with my husband and kiddo and got to go to my sister and brother-in-law's home for Thanksgiving. I found myself really quiet and reserved. Every time I talked I started coughing pretty quick but it was wonderful to be with everyone.
I actually ate a little food (baby bites, slowly) and loved it. Happy day.

Today I've had three beautiful visits- two by Skype to Hong Kong- man I miss those wonderful friends- and one lovely visit at my house... I'm so lucky to be surrounded with love and support here in Oregon. Also, I'm lucky that people watch and pace themselves with visits with me without staying too long, even on Skype. Very grateful.

Thanks as always for journeying with me...

Family shot from Thanksgiving.

Going ahead, going ahead...

I've been in a tailspin down down down this week even as much as I knew better, I couldn't refocus my brain. I have been dealing with heavy coughing this week. It is really annoying. I also am dealing with some new pains that really upset me. My brain surprised me. I hadn't thought cancer when dealing with pains in the past but this time I freaked out. I haven't talked with my oncologist yet but I'm now down off the cliff, mostly. I noticed an odd bruise in the lumpectomy area which was worrisome and my scar tissue under my armpit felt terrible. Additionally my right lung returned to having that butterfly thump when I breathed in/out and some sharp pains in other areas of the lung. I know I'm acutely aware of my body and the signs it is giving me. I'm also aware that I have a lot of nerve damage after surgeries and radiation as well. So. Shall see what my oncologist thinks on Monday. Hoping that I actually sleep tonight. It didn't help that this week has been abysmal for sleep... with the coughing, pain, and more I've been a bit miserable. I think the anti-inflammatory has helped lessen the amount I was dealing with on Monday. The worst was Wednesday when I couldn't hold up the book I was reading to students with my right arm and I had to pause at times to deal with the pain spasms. Coughing randomly throughout the day doesn't help matters. I've taken cough medicine and no, it doesn't help. Lung pain might be an infection although I haven't had a fever... will find out soon.
So... yeah. Dealing with that.
The local hospital situation is over. My husband went in for me on Friday to talk with the oncologist who said the team of oncologists discussed and decided on option 1- wait and see. Heck no. That's not our plan. That's not ok with us.
I never cancelled my chemo appointment with my oncologist so that's on for Monday. Told the insurance company and the other person who encouraged me to check with the options at the local hospital the results. Done with one unknown. Gonna get thru this.
Really enjoyed the conference I attended with friends. Had a fun bbq fancy dinner with Megan the night before. I feel amazed at how lucky I am to have wonderful friends, professional development that inspires, and can't believe that I live here, in Hong Kong, where I can hop on a jet boat with a few hundred people and travel to another region... just a Hong Kong id card and passport and hello Macau. I'm not a gambler so bright lights and glitz simply make me chuckle. Serious security guards in banana yellow formal jackets make me chuckle as well.  Had a fun time there.
Thanks for journeying

My friend I've met thru a cancer support group sent me this. So true.

I liked the lighting at the hotel we stayed at...

Day by Day

I'm here.
Appreciating life.
Taking things day to day.
Grateful for thoughtful conversations, fun times, teaching and reading aloud time, learning opportunities...
Finding places to laugh, even in serious moments, even if I'm only laughing inside.
Happy to have a holiday for more time to rest and recover, spend time with family, relax with my dog.
Looking ahead and planning my future a little.
Staying positive, hopeful, and smiling.
Ignoring pain for the most part, thank goodness for a high tolerance.
Making others smile.
Making kids laugh.
Appreciate every day.
I'm here.


Just taking things quietly at the present moment. Hitting the halfway mark on Monday with radiation was a relief. Did a loud WOO HOO when I got off the Tomotherapy table. Knowing at this point I only have 12 to go is bearable but also a little intimidating. Not letting myself fret but have medicine on hand as side effects could rise. Taking things as requested by my doctor.

Attended an essential oils workshop, learned a little more, appreciated being around kind folk of CanSurvive (CancerLink support group)... Was slightly disappointed that nothing really related to cancer in the workshop, more just about the basics which was just fine, also had my hopes though...  Looking forward to appointments I've scheduled in the next week and also those days with absolutely NOTHING planned. Happy to have that gift of time coming.

Coughing still sucks but I've mostly found my voice again and can enjoy classes.
Pain still is there like a little tiny brick nestled in between my lungs but not as terrible as I expected.

Friends have been giving me rides to treatment, so grateful. Going in and not being exhausted and out of breath is a gift.
My sister's blog posts are a little punch of energy that I think about when the CT scan goes at the beginning of every treatment. Then I silently talk to the radiation and the cancer cells and my heart, lungs, etc. about how things will get better, how cancer cells can just let go and die already, and more. Relieved to have breathing exercises that stop me from coughing during treatment.
Proud of my kiddo who had an art exhibition with all his classmates. Appreciated getting to listen to him and his classmates talk about what they learned with their unit of inquiry. Proud of my boy for his enthusiasm and excitement in learning- my little smart sponge.
Listening to one of the best audiobooks I've enjoyed in a while- As You Wish- Inconceivable Tales from The Making of The Princess Bride by Cary Elwes - brilliant... but I'm quite partial to The Princess Bride...

Happy days to all.
Thanks for journeying.

Appreciated this flower during my recess duty...
blooms in the middle of winter here in Hong Kong.