Feeding tube? Check. Nivolumab? Check.

Catherine and I- she can get me to smile in a dr. office!

Yesterday I got my first infusion of the immunotherapy, Nivolumab. Scheduled to receive it every two weeks indefinitely... A nurse I was chatting with said this about my new oncologist "People don't get in her way..." So happy to have a strong advocate in my court...
Happy first dose is in. Sure there are a few worrisome side effects but worth it for hope and life longevity....

I got the feeding tube on Friday and learned how to use it Saturday. Happy to be getting some nourishment. Internally the tube is a little torturesome, makes muscles spasm whenever I move, incredibly frustrating. Trying to breathe my way thru the pain, shall see if this is something I heal from or if I have to get used to... Laying down takes me five minutes to slowly move and avoid pain spasms... same with walking and presently I'm walking hunched over, not healthy. Tried kids liquid tylenol and I think it helped a bit... I'm on additional pain medicine that's keeping tumor pain mostly in check... Stood on a scale today and was at 118, hooray!!!!! If I wasn't dealing with the pain I think I'd be doing so much better stamina wise. Certainly have more color in my cheeks... and haven't felt like fainting since Wednesday, phew...

It is odd to feed myself by tube. It is a ghastly long tube in my opinion. The home visit nurse cut off around 6 inches and still it is long!! I have protein drinks I use and add in water before and afterwards. Almost scientific...

This ding dong IV was in me for 2 days...
so a new line didn't have to be started...
happy bees tape this time!

Want to get back to work but will see about this pain first...

Grateful my friend Catherine went to my oncologist appointment and feeding tube procedure with me on Friday and also my first dose of Nivolumab on Saturday...
My mom and husband also learned how to use my feeding tube... and my happy boy had a great time with my parents on his day off school and then loved a fun fulled time with his aunt and uncle for overnight fun. Happy he has stability and fun. He's worried about me so it is good he has happy healthy distractions...

Saying "yes" to offers of help has always overwhelmed me but I am doing so more frequently. My friend Miriam visited and cleaned our much needed to be cleaned bathrooms... so grateful and relieved... my mom has also had a eagle eye on many ways she can lighten our loads... Doug and the kiddo can only do so much, especially with Doug working full time now (hooray).

Hi feeding tube. Looks small and easy, right? Wrong....

Watched a little bit of the series: The Truth about Cancer, A Global Quest- important info but long and honestly draining for me to watch.
They mentioned something, The Gerson Therapy- not right for me presently, I've read about before: http://gerson.org/gerpress/the-gerson-therapy/  Interesting approach... Also https://en.wikipedia.org/wiki/Hoxsey_Therapy the Hoxsey Therapy was an interesting health practice approach...

Thanks for journeying with me as always, feeling like things are starting to look up... slowly but surely...

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.

Patient Advocacy, I want it.

Well. I hit my limit today.
I'm calling to talk with a patient advocate consultant at the hospital I'm going to in the morning.
I'm so frustrated with the situation I'm in...
Initially at the time I agreed to have the biopsy on my adrenal gland, I specially clarified that there a DNA analysis/molecular testing would be done. I received the answer "yes" and an explanation on how good the hospital's molecular testing was vs. any other hospitals' molecular tests...

I got the biopsy results last week but couldn't read them because the access is "granted" but not viewable for me online, and I'm pretty tech savvy, if I could see them, I would. The doctor finally copy/pasted the results into the text of an email today. I immediately saw that they didn't do the genetic testing that I was told would occur with my biopsy sample.

I asked what happened and had this answer:
"The reason for not obtaining them at the time of biopsy is because we didn't know what the primary source of the tumor was. 
It would likely be reasonable to ask for the samples collected to be evaluated further for molecular testing. You're a young patient, and if there are any mutations within your tumor, knowing that may help direct therapy. The decision to order molecular testing would need to be made by ...Dr. and ....Dr."

I have an appointment this Thursday but am concerned that it will be pointless because the oncologist will want to talk about chemo and I won't unless there's precise analysis of the tumor. I'm not going to want to do chemo without knowing it is actually worth it...

I also can't go ahead with any other research for treatments without that molecular testing/DNA analysis. Every place I called asked for those tests.

Exciting to have a new, reliable car.
Another Prius- my favorite color!

So frustrated.
I wrote to the oncologist I'm seeing on Thursday with my frustrations and a request for molecular testing, shall see.

Feel like I'm getting the run around. Being bounced from doctor to doctor isn't all that wonderful. I'm sure they all have the best of intentions but I'm noticing things slipping and not being done... and having to call to beg for appointments instead of having referrals isn't fantastic either... Hopefully a patient advocate might help me. Shall see.






Besides that frustration, I've been enjoying life... having work meetings, getting a new car (purchased with my last paycheck from my previous job/loan- hooray to learning how a lease isn't a terrible thing...), and enjoying time with family and friends.
Energy is there. Ebbs and flows and I'm just riding the waves and enjoying the days...
Went to a movie with my mom and sister today called "The Prophet" and found it quite powerful. It was animated... gorgeous. Wish I could have had a remote control and hit pause after certain points because it had so many deep, thoughtful moments and then quickly moved to another deep, thoughtful moment without time to digest the previous one. It also made me quite sleepy.

So proud of my sister and how she pursues opportunities to
share her talent with the world!!

Also had the chance to meet a few people I'll be working with this year... feel like this are progressing in the work setting, happy about the future with that. Excited...
Shall see how things go otherwise. I'm excited about meeting with family this week and going on a few adventures as well. Had a great trip to the beach this past week, was restorative. Also loved going to a SMART (Smart Making a Reader Today) event at Powells books and seeing fantastic author and illustrator friends, they inspire me so... Plus seeing my incredibly talented sister perform in a musical was fantastic.

Loved this beach- Hug Point... Oregon Coast.

I'm appreciating the nutritional program I'm on. I'm happy to have the time to focus on helping my immune system get stronger. I also am relieved to have those essential oils because with the air quality being a little poor recently with terrible forest fires in Oregon/Washington, the oils help me stop coughing, a little...

Thanks for journeying with me!

Yes, that is mandatory

Tried out new scarf tying style after watching
a video, I didn't mind it...

Today I told my oncologist that I believed that the PET scan that's happening in a little under two weeks was going to be clear. I love that he replied, "Absolutely, yes, that is mandatory." and then later after dealing with questions and wellness checks, he said "Now, I think we'll just focus on staying positive." Then he gave me the normal firm pat pat pat on my back. I really appreciate his attitude. I've been lucky to work with him.
My questions:
When will I have my PET scan? June 29th. When will I find out results? 4 days later.
Why in the world are my eyebrows coming out? It has been 5 weeks since the last chemo dose. His answer? This shouldn't continue. It isn't too out of the ordinary. (SIGH, have a feeling that the chemo meds will take a long long time to get out of my system, but on the positive side, hopefully they are helping me out while hanging out in my body!)
What can I do with pain medicine, can I just stop taking it? (I'd cut them in half for 3 days now, not feeling need to take as much as I had before... phew) The drugs are not addictive, you can just stop. (In the medication info it does say that it is addictive, so I'm glad I did it my way...)

Saying goodbye is hard. Staff goodbye...
Decided to wear a wig instead of being in yet another
hat/scarf mix... Holding back tears and sad...
but happy sad.

Job interviews and the unknown and decisions and packing and finishing work and goodbyes are... a little distracting, draining, worrisome. Repeating to myself, I will be well. Taking many long deep breaths. Things are working out. I'm doing ok.... BUT I'll be really grateful when there are less unknowns.
Now. I really appreciate how many people care about me. Today I got advice I appreciated, mostly. Hmm. Someone who mostly knows me and my ways told me that I needed to make sure I didn't overdo things in the fall because I'll still be healing for the next year. That I need to carefully make decisions about future work with that in mind. True.... but will see. Low stress is a goal. Happiness is a goal. Feeling fulfilled is a goal. Being inspired... is a goal. Shall see.
Going to be a few active days with wonderful people and wanted to give myself a little journaling time here now. Grateful to not see my oncologist as often. Expensive and important? Yes. Less feels healthier though. The nurses in the office were so kind and friendly. They're happy for me that I'm moving but acted quite reassured that I'd be back one more time... saying goodbye everywhere is... HARD.
Having fun with the students I am seeing.
Not having fun with cataloging at work, but that's just part of the job.
Enjoying time spent with colleagues though... especially my assistant.
Lucky me.
Thank you for journeying for me. Thank you for focusing on a clean scan. Really appreciate the support and positivity from my last post. Grateful grateful grateful.

Morning time... my most frequent combo-
bamboo/cotton hat with favorite scarf tied around.

Just Exhausted

This week was good overall. I've been dealing with numerous Skype interviews for job positions in Oregon. Don't have anything I'd like to share about those interviews at this point. Just finding positive hope for the future as a teacher librarian/school library media specialist.
Visited with my oncologist this past Friday. I was happy I gained weight. I'm not happy I'm dependent on pain medication. He's happy with my progress. I've "turned the corner"... said he knows the last round of chemo was a bit aggressive and was really hard on me. He thinks June 29th PET scan will be fine. I don't have to see him for almost two weeks which is a first in many months... so many Dr. visits! Grateful insurance has at least covered the visits...
I'm presently exhausted. I know I can't control everything but am working hard to get utilities sorted at home and also in a few days I'll be dealing with closing accounts in Hong Kong... Job searches are interesting. Shall see.
Husband is dealing with my rare meltdowns... A pretty major one occurred tonight, feeling better once I have one... that release. Part of life, that being overwhelmed thing. As much as I focus on the positive and know I can't control everything, the things I can manage are piling up a bit... Thank goodness I have family and friends I can lean on at home. My parents are helping so much with everything and my sister and brother-in-law are helping a ridiculous amount as well... plus many friends helping me with the job interview/search/selection process... good to rely on them. Grateful to have people I can quickly Facetime/Skype when I'm overwhelmed.
Started shipping boxes by boat home... we'll arrive home before they do but that's ok.
Looking forward to the transition home even though every goodbye is so hard. Today we had our Jewish community final goodbye. Kiddo was fine with it but I had a hard time with it, hugs and such... such a wonderful community. So I've said goodbye to my wonderful writing community and teacher librarian community... next will be goodbyes with my cancer support group... work goodbyes will be close to the hardest... my close friend goodbyes will break me. Some friends I'm trying to see on a weekly basis because it is just so hard to imagine not seeing them consistently soon. Thank goodness for online connections... I know it isn't completely goodbye. These friends are like my family here so... will be hard but will get thru...
Thanks for journeying with me as always...

For those who like the idea of qigong, I'm planning to purchase videos from here for continued practice once I move away:
http://taichi18.com/online-video-course/silk/
Looks like I can watch many videos for free here as well:
https://www.youtube.com/channel/UCHEraxjZzHRVCvW9zqZl5bg

Just a quick check in...

Weekends are helpful. Healing has been my focus.
This morning I got up early and volunteered thru midday at a tournament of the minds competition. My son attended as part of his school team but I didn't get to see him compete, just got to judge a bunch of other teams which was just fine, I like helping out...
I came home after a long walk with my son through Kowloon to Mong Kok (30 minutes, humid day) and then an MTR ride home and pretty much rested for the afternoon focusing my energy on this paperwork I committed to reviewing and providing feedback for online... So. Tomorrow. Rest. Grateful for a playdate and a patient husband who wants me to rest. And a kiddo who's excited to go for a playdate, etc.
I missed yoga today, sad but part of life when you have activities. Hoping to go next week.

Went online and found an interesting article on healing chakras...
http://www.elephantjournal.com/2014/06/the-ultimate-guide-to-self-healing-with-yoga-chakras/
I know this is my chakrah I need to heal:

4th Chakra

Location: Heart/center of chest
Sanskrit: Anahata/”unstruck sound”
Color: green
Element: air
Issues: love, friendship, kindness, forgiveness, devotion, generosity
Associated with: thymus gland, lungs, hands, heart, blood; immune and endocrine systems.
Governs: love, compassion, unconditional acceptance
Malfunction: high blood pressure, respiratory problems, heart and lung problems, feeling heartbroken

Healing Techniques

Music: classical, heart chakra playlistAffirmations: I am fresh. I am clean. I am unstruck. I am unstuck. I am loving. I am loved.
Poses: standing back bend, camel, reverse warrior, triangle, bridge, wheel
Connect with: the heart, the breath, the wind, maitriPranayama: full yogic breath
Practice: Bhakti yoga, yin yoga, restorative yoga
Meditation: forgiveness, Metta/loving kindness

A dear friend just got through surgery and I'm so relieved. It was six months of waiting for a surgery and she's been on my mind heavily. So happy for a successful surgery.

Waking up every morning and still feeling grateful. Appreciating life. Happy to be here on earth... I'll work on those affirmations though. Not certain about the yoga poses...
Will work on forgiveness as well. Dealt with a little disappointment with someone this week and working to refocus on forgiveness vs. feeling anger... plus feeling pity...
Been appreciating practicing qigong breathing exercises this week. Morning and night I've been giving time to it.
The coughing has not eased up yet. Annoying. Really annoying. Taking meds, being patient.
Going to see my oncologist on Monday. He's taking blood, checking on me, etc...
Then I'll find out when my next/last chemo round is... 8 more hours... I started doing art in focus of that day. That last day.
Going to refocus on reading and blogging for a little while. Sleep and rest as well. My sweet dog is still a little off, we're not certain what is wrong but think it is a little more than old age so probably bringing her to the vet soon.
Fridge seems to be working still, grateful for that. Plus it is nice to have a new washing machine...

Pretty quiet post.
Thanks for journeying with me...

A spin for the positive

Well. I was a little upset this morning having to go for another chemotherapy round. But after an hour, I was feeling pretty positive. This week I didn't have to get blood drawn which is always lovely. I saw my oncologist and talked with him about all the pain and coughing I've been having. He poked, prodded, looked at my bruise, listened to my lungs, tapped me in all these different places and concluded that I had bronchitis but that my lungs were surprisingly clear. I have to be on a few medications to clear things up but that's ok... It is bearable to swallow pills that could stop me from heavy painful coughing. That's all I needed to hear from him, deep breath in, out. Reassurance.
I am so glad that I got to do these last two rounds of chemo with my oncologist. I'm comfortable at the clinic. I like and trust the nurses. They make me feel valuable and cared for. There were 6 patients all getting chemo today. I got to the clinic a bit early at 8:10 and saw my oncologist at 9am. Then at 9:30 am they started the heating pad on my hand. Then around 10:00am I got the line in my left hand. My veins are recovering from the last rounds of chemo. I can heal. At 10:30 I started getting the pre-drugs- allergy and antinausea medication. At 11am I got Taxol and it took 3 hours to get it in me. It is normally 1 hour but since I'm only doing two chemo infusions for the last two rounds, I get the triple dose. Then I got Avastin at 2:00pm and Carboplatin at 3:00pm. Then at 3:40pm they started pushing saline into me to clear out my vein, this lasted til 4:30. That's a long time overall. Like a full time job.
I shared with my nurses about an interesting new invention that lessens the complications some have with their veins, the ladies thought it was good to read about:
http://www.industrytap.com/veinviewer-means-no-poking-people-relentlessly-locate-veins/27706
They were also excited to talk with me about the lyphodoema specialist I saw... I felt useful and able to share a little knowledge, made me feel more at ease...
I had a book to read, it was good. I am enjoying an audiobook called You can change your life by Louise Hay which is really helpful. I had magazines and games to play as well. I even got to Skype with my wonderful parents until my mom noticed that I yawned a few times within a minute. I did nap on and off, didn't fight it but there were so many people around me I didn't deeply nap/sleep. I finished with a smile.
I walked back to the MTR feeling at peace. I found a place to sit down. I got back to Causeway Bay and visited the pharmacy. As I was walking to the pharmacy I tried out what Louise Hay mentioned in her book, that you can have positive intentional thoughts... so I thought "I'm going to have a good visit to the pharmacy and they will have what I need." I went to the pharmacy where they recognize me and are really helpful and friendly. I talked with the owner who asked how I was doing and feeling. He looked at my list of medication (8 drugs in one prescription sheet, sheesh) and said, I am giving you a discount today. So I got reasonably priced medication. Then he said to me, please make a copy of this receipt and then when you visit again, I will match with the same price for the prescription you buy. Ok, done. That was certainly a good visit to the pharmacy.
I enjoyed the visit with my son when I got home even with a few glitches in our interaction and then had a delicious dinner and a really helpful qigong session packed with breathing exercises which was just what I needed. The anti-inflammatory has really helped me plus I think I'm feeling mentally better about things so the pain in my lung, side and back has lessened. I'm so relieved about that...
Getting thru the days. Will see about tomorrow. Take the day carefully. Take my anti-nausea medicine. Not push myself. Looking forward to it. Think it can be a good day. My husbadn has asked me to take taxis for his peace of mind as a journey around for the next week. I can certainly respect his wishes. I did take the MTR home but that was because the appointment was in Mong Kok and it is a new place for me and I felt calmer just taking the elevator down and going into the MTR to go home vs walking around buildings looking for a taxi stand, felt like I was protecting my energy...
As always, thanks for journeying with me, visiting on my ups and downs, for a chemo treatment day it had a few downs but I'm just really surprised how many ups I've had... One more and then I am done with chemo. Wow. I can take it all day by day but "one more" makes me smile presently.

Still can't quite smile at first in these sessions but I got my bottom to the seat.

Drugs working their way into me...

I appreciate that the needle is mostly covered...
Heat pad underneath me to ease the pain and stinging as the medication went in...
Was ok, not terrible pain, just eased with a little heat.

Yup One of THOSE weeks

This week has been a struggle for me to be honest. I disliked Monday's visit with the oncologist at the local hospital. Tuesday and Wednesday I dealt with a lot of pain in my right lung and scar tissue under my armpit and more. It is limiting my range of motion, etc. Not sure why it is happening but riding the waves of pain and trying to refocus on healthy breathing even though it hurts. Funny enough, I'm certainly noticing my breaths while I go through the pain and realize when I'm breathing shallow, etc. Not sure if I slept wrong, slipped something out of place, etc. Just know I have pain. Shall see how the rest of the week goes. Started taking an anti-inflammatory and will see what my oncologist says. The pain is a tiny bit more bearable today- Thursday. Still finding it a little odd/disconcerting but working hard to staying positive and not worrying about one more thing.

So we are waiting for decisions from the local hospital still but can't do anything about that presently, sigh. I've made good decisions so far with my oncologist and I trust his plan.
I went to a cancerlink support group meeting Wednesday and the guest speaker talked on energy healing. She led us through two meditations- one was specifically on breathing and bringing energy in and the other was visualization. Interesting woman. Interesting process.
I appreciated this breathing exercise for people with insomnia, tried it last night, certainly distracted me into sleep. Reminded me a little of yoga nidra.
http://www.theglow.com.au/wellbeing/4-7-8-breathing-sleep-technique/#ZmpZbsQ
Breathe in 4 counts, hold breath 7 counts, breath out 8 counts. Sure. I can do that.

I apologize to any friends who became concerned after the last post. I'm trying to stay confident and positive about the plans ahead. The fact that we're exploring the local hospital doesn't mean I'm changing any plans. The local hospitals here are good. Just not what I'm quite comfortable with. BUT if they are willing to provide the exact same chemo plan my oncologist has made, then we would go with them. Otherwise, I'll go ahead with the chemo with my oncologist. This would mean beginning on Monday. I will not be going with the local hospital if they say "wait" or "only 2 of the three chemo drugs". As I mentioned, perhaps not clearly in my last post, I refuse to compromise my health. Gotta have Faith.

The days are good at work. I love the kids. Appreciate my time with colleagues. They make me laugh, think, reflect... such a kind, wonderful bunch of folks.
I'm looking forward to going to a technology conference on Saturday. I'll be going with my wonderful friend Megan and then see my friend Dianne make a keynote speech at lunch (I love her presentations, such a talent.)
I posted about the library job I'm leaving here in Hong Kong and am really hoping that my admin can find a good fit to replace me. Hope they find someone who can grow into the role, shall see.

Thanks for journeying with me...

Being Incredibly Controversial

My oncologist warned us. He said, "I know I've gone on what others consider a very aggressive route with your treatment. If you talk with an oncologist at the local hospital, I know this will come up as controversial."
Why yes.
Yes it did.
I haven't heard someone say the word 'controversial' that many times in the space of 20 minutes before. The local hospital oncologist said that my oncologist has gone the extreme route all the way through... including radiation, etc. The local hospital oncologist flat out told us that there are three choices that they could make to support me:
1. Do nothing and watch how I'm doing simply with scans, etc.
2. Treat me with chemo only partly with Taxol and Carboplatin
3. Treat me with chemo cocktail that my oncologist planned and gave me before: Taxol, Carboplatin and Avastin.
The oncologist said that in most cases they would only select #1. After further discussion with my husband about finances, our choices, and our plan, he said that he needed to get back to us.
He is going to meet with a panel of oncologists on Thursday and see what they suggest. Then my husband is going to go to my appointment on Friday (as my proxy) and find out what they say, possibly with me on the phone.
My husband said: "You don't need to form and opinion or think about this until Friday."
Ok then.
In waiting mode but grateful that there's an option we're exploring and that we're also in complete agreement that we are not compromising with my health plans.
If we go with the private oncologist I've seen the whole time I'd start chemo next Monday. But shall see what comes of the local hospital first.

Some interesting points this local hospital oncologist shared:
1. I reacted well in the past to the chemo but there might be new worrisome side effects
2. Taking more of the chemo cocktail might make the chemo less effective in the future if (god forbid) I need chemo again.
3. There's no proved research that says that more chemo is effective, many oncologists are doing one of the three options above without any collective data.

Hmm.
Controversial.
Just want to live day by day appreciating life, thank you. Trusting my oncologist at this point but forcing myself to be patient til Friday since money is a factor. Sigh.

Thinking about Bali, roof of one place we stayed at...

Today at work I received many compliments about how good I'm looking, healthier, etc. Some mentioned how nice it was to see the curls coming in. Sigh. I joked with one person "Just in time to get more chemo" and startled her. My sense of humor is still twisted a little tight I guess.
Glad I can see where I'll get back to hopefully by August/September/October (maybe I'll have curls by my birthday this coming year, that'd be a heck of a lot better than the past two birthdays) after this next round of chemo. I do feel a little whiny and have thought over the past few days how it just isn't fair. But what is fair in life at times? There are terrific wonderful days and there are tough days, riding those waves... Bearing up, dealing, and not thrilled but coping.

Thanks for journeying with me as always...

Plugging away and getting thru the days

Well. Got thru another week. Had a harder one, perhaps I'm pushing myself too much/expecting too much but I'm not quite feeling great. This is ok for me just making time to rest every day after work but I'm not thrilled with the pressure I feel in my chest and the odd pain I feel in my stomach area. I brought this up with my oncologist today and he said to be patient and that the pain is normal. Hmm. Chatted with him about plans for the next months. He said he actually now would like to skip giving me a PET scan and instead do the last two rounds of chemo first. Hmm. I look forward to seeing him on April 11th to find out more about his plans. I've been asked by insurance/HR people to go back to the local hospital possibly for the last two rounds of chemo treatment as the cost might be much lower. I will respect that request but if I feel that I'm compromising my health, I'll return to my oncologist. Cost is terrible and scary but honestly, I'm not taking any risks... we'll deal as needed.

I was happy about a few things, got teary eyed again about them actually- I've gained a little weight again, phew... nice to not get a lecture about eating... Plus my cancer tumor markers have gone down again a bit which I find reassuring. Darn cancer... really working hard lately to refocus my thoughts to the positives, anytime I have the negative ones creep in. Really challenging sometimes but overall I know I'm doing pretty well at keeping positive. Expected up and down days since I'm on break from treatment...

A few things to look forward to... holiday in a week and a wonderful friend joining us for most of the time, woo hoo... and then work thru the end of June... then moving home to Oregon early July! I decided to begin a countdown for the move home...  hooray to 109 days left to enjoy Hong Kong and Asia before the big move back.  Countdown

My good friend Lenore has returned to the US, sigh. It was so so wonderful to spend time with her and catch up. Grateful for the gift of time that we had together (plus fun time with other lovely friends as well during the visit)... Lenore was interviewed by another author friend/radio presenter, Reenita Malhotra Hora, during her visit on Hong Kong's radio station- RTHK, it was a fantastic interview!!
http://programme.rthk.hk/channel/radio/programme.php?name=radio3/state_of_the_art&d=2015-03-15&p=6684&e=299363&m=episode

Thanks for journeying with me...

Feeling lucky for special times with friends. Grateful... :)

Third time saying DONE

Hallelujah.
   Grateful to be done with this radiation crap. Walking down the hall every session. Going into the room to remove clothing and jewelry each time. Putting it all in a little locker and wearing the key bracelet down the hall. Putting the key on the little counter. Kicking off slippers, climbing up on the table, fitting into the body cast, laying down with arms painfully above head, covered with a sheet, adjusted left and right writing on my skin near my "tattoos", getting my other tattoo checked in the center of my chest, covered up in a fleece blanket, and going in and out of the tube... Done. Done. Done. So grateful to be finished. Hallelujah.
   Loved when I heard the words, "Ok Debbie, for the last time, it won't be long now." Brought tears to my eyes. She knew I was listening. Lovely woman... Hope she helps everyone like she did me... so kind and patient with my questions and always a smile when I came out of the changing room.
   Can't believe I have gone through three rounds of radiation treatment. This one was the most amount of treatment days. This one was the oddest because I was focused on the radiation going and killing a specific cancer tumor vs. just killing possible stray cancer cells after a tumor was removed.
Now. Waiting. Healing. I know I'm still burning from the inside out. I'm grateful to not have my skin burning this time though. I'm not fond of the side effects, but I know I'm lucky in comparison to so many others who went thru radiation in this area.
   Tomorrow? Happy to not be heading to the hospital after school.
   The next day? lung x-ray... gotta dig thru my x-rays to find my other old lung x-ray so they can compare and see if there is any damage. Then time to see my oncologist and see what he thinks and when he wants me to have that PET scan.
   Getting thru. Day to day.
   Wiped out presently. Shall see how I'm feeling in a week's time. My husband is happy I have a little recovery time. I need it. It takes over a month to feel almost like myself after radiation treatment. I remember this all too well. Energy is low. Healing is slow.
One other thing to be grateful for is not having to see that radiologist. I've been anxious the whole time I went for radiation treatment because the last two treatment rounds he made sure to see me part way through and at the end. Glad he never was there. Perhaps my oncologist told him to stay away.
Really glad that he did his part planning how the radiation should go and then let the experts run the machines and take care of me. Goodness I'm grateful. Need to stay away from his negativity as much as I can.
   Moving on. Moving up. Treating myself with care. Hoping to get over sleeping issues I've had this past week sooner than later. Shall see. Same with the neck pain. Appreciated emailing a lymphodema specialist to find out more about how to treat my neck. So glad that I learned about risks. Now I know what to watch for and how to treat my body, especially good to know to avoid heat and ice packs... I certainly want to meet up with him soon but waiting to talk with my oncologist about it first.
   I did get to celebrate a little bit after treatment by attending a Hong Kong librarians meeting (love my colleagues) and meeting a wonderful, talented author and illustrator. Then I came home and slowly ate dinner, redirected my brain to a few shows, and chilled out with family...
Many thanks for all the support all. Appreciate you journeying with me. Feels like a major step I accomplished today, even for the third time...

Goodbye locker. Goodbye hospital gowns.
Goodbye yucky hospital slippers. Goodbye treatments.
Thank goodness.

Only 2 more

Getting thru the days. Enjoyed visiting an Indian Food restaurant, delicious place. My husband said, "Wow, I'd get this takeout food every day if I could get you to eat this much at every meal." Nice to have an appetite and like food... PLUS we ordered take-out the next day from the same place, y-u-m. Yes, I'm addicted and my husband is ever so supportive...
I'm quite happy that I'm looking at final two treatment days. Pretty exhausted. Painful to deal with treatment but I'm grateful to not be burned on the skin this time. I think the main thing bringing me down right now is the shoulder and neck pain I've had since the first day of treatment. Putting that right arm over my head has exacerbated the pain... not certain how to handle it.
Normally I'd put ice on a pained area or a heat pack but I recently sat through a presentation about lymphedema and one of the recommendations was that I avoid a sauna, hot tub, or anything that makes my skin pink... also I'm supposed to avoid having anything freezing on my skin. That makes things quite limiting.
I learned also about how lymphedema occurring in different quadrants based on how the lymph nodes work... Unfortunately, I've had lymph nodes compromised in 3 areas of my body. With the cervical cancer, they harvested lymph nodes. With the breast cancer, they harvested lymph nodes under my right arm- go figure, it is my right shoulder that's in pain... With the metastatic cervical cancer, they removed a portion of my lymph nodes near my heart, those are the ones that are getting radiated presently. Think I should see a specialist to check on my lymph nodes, learn if I need compression sleeve, etc. Shall be chatting with my oncologist about this on Saturday when I see him next. Quite disconcerting but good to be aware I suppose.
Now to finish my long countdown from 30 to 0. Will be really happy to get there finally.
My husband snuck this picture of me when I was snuggling with our dog today. I'm pretty darn fatigued lately... My hair is growing in quite nice but I know it could all go away with those last two chemo treatments, sigh. Shall see. Personally the thing that stands out to me is my eyelashes since they are mostly returned now... I somewhat almost can see myself and see a healthy person again...
Thanks for journeying with me, really grateful...

Four of Thirty Treatments Done

Supplements ready to be sorted.

Got thru the week. Can feel a little of the treatment effects so far but nothing painful. My oncologist warned me that I probably will be dealing with lack of appetite and acid reflux soon... shall see if that turns out to be the case. Staying positive as I can but also keenly aware of side effects. I started using Radiagel on my skin where I think the radiation is hitting- that was my mistake last time- forgetting to take care of my skin from the beginning.

Had to sort my supplements/medicine and couldn't believe it took 45 minutes. Glad to have them sorted for now. I take a lot of supplements and additionally Chinese herbal medicine...

I have another tattoo now- another little itty bitty dot on my left side so the radiation technicians can quickly know if I'm positioned properly. So I have a total of 3 tattoos now, sure they're dots but that's as much as I have the guts to deal with... :)
So I've been pretty fatigued this weekend, not sure if it is from being tired from work or side effect from radiation. I listened to my body though. Took naps, enjoyed family time, saw a movie, enjoyed date night time with my husband, and got to work on my blog for a little bit- happy to now be prepped for most of February. Gave myself permission to be brief on some posts...

Saw my oncologist on Saturday and he pulled yet another rabbit out of the hat. This time he told me that I might not get the other two chemo treatments right after radiation. He might wait until after I'm back from visiting the US for Spring Break... he kindly said that it would make it less of a burden while I'm on my trip... I just want to take care of what needs to be done. So... shall see. He said it depended on my reactions to radiation and if I didn't lose weight, timing, etc.

The visualization and breathing practice is helping me get thru radiation. Also my wonderful sister's special memory blog posts are picking me up each day and enjoying going back in time mentally with her...  https://startwithsparkles.wordpress.com/2015/01/23/piano/  Grateful for coworkers for giving me rides and walking with me to radiation... also grateful for those who have told me that they'll give me rides and walk with me- so kind... I certainly find that the help gets me to treatment. I also am thankful that when I walk into the clinic a little early I sometimes can get treatment a little sooner... Glad that I don't have to go on the weekends, that'd be abysmal. Thanks to all who have been commenting online, emailing me, etc... really is a lift.

Well... thanks for journeying with me... will likely be quiet this week unless something strikes me for writing...

Can appreciate wearing a hat.
Especially over wearing a wig. Tired of wigs.

Results plus Thoughts Randomly Coming

The PET scan results were in, never thought another round of chemotherapy could be promising results but they are. They certainly are. I worked to redirect my thoughts when they went negative, worried about random pains in my body and redirected to positive every time I caught myself. It is challenging but I do think the more positive I can be, the better. Speaking of which, sometimes being around my oncologist, who I thoroughly respect, is not so positive, at all. Here's a few things that have come from him recently and in the past:
Here's another list-  Top 5 Things I Don't Want to Hear From My Oncologist:
5.  "There is a real chance the cancer could come back elsewhere, this is a long shot for being curative." - December, 2014
4. "After radiation, we will need to look at long term medication." - December, 2014
3. "There's likely to only be a 40 % of chance of success with chemotherapy." - September, 2014
2. "The results are not good, look your lymph nodes are lit up." - August, 2014
1. "You Have Cancer" - September, 2013

So, there's still a tumor on my lymph nodes in my chest near my heart. It is getting smaller. My oncologist insists that it has shrunk due to the chemotherapy, not just when the lung specialist removed a portion of it during my September surgery. There are no other areas in my body lighting up presently from the PET scan which is a good thing, a very good thing. Damn the lymph nodes, but I'm here. I have to have four more chemo treatments, two before the holiday and two after the holiday. (But I get to go have fun with family and friends and turn off the cancer mindset for a little while, hallelujah.) But I will get those chemo treatments done and then have a few weeks break and begin radiation treatment to hit those lymph nodes.

Things my oncologist said to me over the course of this year + were promising for the first two cancers, but there was a major shift when I had the metastatic diagnosis. That hasn't been so wonderful. I'm going to stay positive. My husband is not thrilled that I still have so much tumor lighting up on my lymph nodes, I agree with him, it sucks. It is disappointing. Damn cancer. But there is progress, slow but there. And I'll take progress. I'll also be happy to be done with chemo in 5 more weeks. Today's treatment was just fine. Normal one dose day with a visit and lunch from a special close friend. Was grateful. I also had many hours on my own with the kiddo tonight which I adored. We had fun planning out our evening and spending time together. Hooray for my husband getting a little time away from home to do things.

So the before is below in blue and the after is above in blue. Must it be blue?
My favorite color? Meh. You can see measuring info and such...
So, lymph node tumor right next to my heart, shrinking. I get a whole fancy binder with each PET scan.
Not the kind of book gift I want, but I'm collecting them nonetheless.
This is just one page of many many many analyzing my body scan. 

Random Thought Time:
Oh the vanity... Fully admit, working to stay positive about life... but sometimes vanity rolls thru a little.
How many of you have created odd situations in your mind and then acted them out? I've been concerned about my lack of hair and using my passport. Should I wear a wig on the airplane so that I don't need to worry about people questioning me? Would people question me?
I've thought about this to the point that I am imagining being up at the passport/visa entrance area and am asked to take off my head covering... drama drama drama. Who cares what I look like? I guess I do since I'm thinking about it. After thinking about it for a while, I chuckled to myself. I live in Asia. There are many many people who wear head coverings here. I don't believe that my little head covering is going to be an issue.
*Missing my hair. Looking at my scalp and sighing that it will be a while before hair recovers from the chemo and begins to grow in. The little bits here and there that didn't fall out have randomly started growing out, it is odd, a little curly. Shall see...

Burned my hand today a little bit in the afternoon, spilled hot soup on it. I used cold water and then my helper brought me a miracle medicine, Oronine Ointment, that helped after two applications. So relieved. Really annoyed by my klutzy actions lately. Knew the bowl was too hot so of course I picked it up a second time. Sigh. Slow down Debbie.

Actually had a pretty darn unpleasant bloody nose two days ago, will be glad to be free of medicine that has that side effect.... also noticed that one of my fingernails is now looking really unhealthy with brown above the white of the nail. Hmm. Some have mentioned that they lost their nails because of chemo side effects. Hmm. Shall see. Husband told me to put nail polish on it so that I don't worry... not exactly helpful but I get what he's saying.
I'm not so thrilled with my skin breakout on my face either. It is certainly different than the others I've dealt with in the past. My oncologist said that it is a normal cumulative effect of chemotherapy, didn't recommend anything. The nurse I talked with told me that it is worse for so many others... she shared with me a few sad stories about other patients that I really could have lived without hearing... So I suppose I'm lucky, sort of.
Oh vanity...

Read a study from a friend in the US who has a family member also dealing with cancer, found the article hopeful, will share with my oncologist next week. About new treatments helping metastatic cancer patients:
http://www.medpagetoday.com/MeetingCoverage/AACR/32048
Had enough to ask my oncologist this week, here was my list:
-PET scan results
-Nail
-Nose
-Face breakout
-Muscle pull (pulled in yoga yesterday, odd, feeling a little better though)
-Nausea medicine
-Plan for radiation treatment scheduling

He seems to have a limit after a certain amount of minutes talking together, I respect his focus and concentration as we meet and just keep writing my lists. He doesn't get annoyed with my questions

Thanks for journeying as always...  Grateful for progress this time... Bearing up for 4 more doses.

Unproductive, can't really move days

I am really, really tired of sick leave.
I was tired of sick leave last year.
Twice. It was already torture I was happy to put into my past...
I am tired of feeling unproductive.
I am tired of being stuck in bed.
I am tired of side effects bringing me down.
Tired, tired, tired.

Today, Monday, was a not-so-fun day. I took anti-nausea medicine. It throws me off.
Sundays confuse me- I have energy and a little ambition. I put together to-do lists for Monday and then laugh at myself (and honestly get a little frustrated at myself) when Monday rolls around and I can't do anything on the list. Especially when the list includes things I find really important. My husband just looks at me when I mention to him about my frustration and says "Monday, Debbie, Monday you need rest." He's right. I'm just frustrated is all.
I enjoyed watching tv shows and reading a magazine. 
My brain wouldn't concentrate on reading beyond that. It wouldn't even give me focus time for writing.
I somehow cleared out my emails by the evening though.
I enjoyed a few picture books that my wonderful assistant sent home with my son. Snuggle reading with the kiddo is always a good pick-me-up.
I actually worked on my other blog a little bit.
I Skyped with my friend who is coming to visit and help me out this Friday.
So I did actually do 'stuff' but man am I sick of sick leave. 
I love work. I love teaching. It is my passion. I'm living vicariously through my blogging friend's posts and conversations about inspiring things they're doing with their students. Can't wait to get back to work when I have energy/am allowed.

I think when I don't leave the apartment it is worse but I'm just not up for adventuring on my own on Mondays after chemo, too paranoid now. Don't want to misjudge my energy and collapse somewhere random.

I found out that my oncologist is off for a one day work trip to the US on Saturday. This means I had to change my chemotherapy day. So I'm having it early, this Thursday instead.
Ruffled my feathers at first to be honest because I was just starting to understand and read what was going on with my body... and I didn't want to break the routine. I do consider it a mixed blessing because when my wonderful friend arrives, she'll be dealing with some terrible jet lag and my worst days will be days she'll need for rest/recovery anyways. We've already planned to watch many movies together. Looking forward to friend time. 

One good friend wrote me and I loved what she said: "I wish you moments of forgetting, even briefly, that you are sick." 

Isn't that lovely? I agree, those moments of forgetting will be cherished. It is hard to forget, especially when I'm curled up in bed unable to move. But, I will try tomorrow- if my body allows- to get the heck out of the apartment for at least a few minutes to walk around. Getting out and about does help me sometimes forget for a moment and just enjoy the day. Hong Kong weather is H-O-T but so beautiful right now. I hope to enjoy it a smidgen...

Qigong in the evening will be a welcome distraction to refocus my mind, breathing, and energy. So grateful I learned about it and that I have friends willing to come to my apartment and take the class with me... Being surrounded with friendly smiles, hugs, and support is simply a blessing.

Wishing everyone a wonderful day, thanks for journeying with me, even on the lower, weaker days...

Perhaps oversharing?

Warning: This specific post isn't for those who are reading to check up on me. This is for those who don't mind a woman oversharing and complaining a smidge... maybe more than a smidge. Men... not exactly for you. My poor husband has heard it all and feels sorry for me, but that's part of his life with me, the oversharer... spare yourselves...

So, for a while now I've been thinking about nursing my son. I'm sure that's what others think about when they're dealing with the aftermath of operation effects and chemotherapy, right? No?
Well... here I go with sharing too much x 2 today.

So, nursing. I was one of those smarties. I thought to myself, "I've nursed my son for 16 months, I'm preventing any chance of breast cancer, woo hoo!" (little did I know 8 years later...)
Eight years later when I received my first diagnosis (cervical cancer) my first thought was, "Thank god my son is already here." well, maybe not my first thought... but I was so grateful my husband and I already had a happy, healthy child. So grateful.

So, for those moms who have nursed their children, do you remember when your boobs felt heavy, ready to pump or nurse? And do you remember ever feeling that for more than an hour? two hours? As teachers, some of us have that challenge of the "must pump!!" moment but you still have 3 classes in a row you must teach first.

Hmm.
So, why the heck is my mind backtracking eight years?
Because for the past stinking month, my right boob has felt like it was crazy engorged. To that point where I'm ready to scream "OW!!!" Well, sometimes I do yelp... I think it is a combo of a few things:
1. Lymph node removal- drainage is screwed now
2. Surgeon who removed my lower right lung cut into the underside of my breast to get to the lung (think that's the camera incision), also he cut a long incision across and almost into my breast for the lung removal portion (I think). The scars are healing but still a bit painful sometimes. Quit taking tylenol/panedol a week ago. That poor breast didn't need to be cut into more than it already had with the lumpectomy.
3. Radiation- this poor boob had already been thru enough in May when I went in for round after round of radiation. Poor thing doesn't know what end is up. My oncologist offered anti-inflammatory. No. I was taking that and nothing happened with the breast... nice thought though. He's told me "wear sports and supportive bras"... certainly am during daytime hours, made the mistake once of not, OWWWW.

So I walk around with what I describe as an engorged, painful breast in addition to the center of my chest burning with pain (assuming it is the cancer/healing from lymph node removal)... in addition to feeling scar tissue form... oy. I feel very lopsided when I look in the mirror. I've asked a few poor girlfriends if they can see a difference when they visited. They said "well, now that you've pointed it out..." - hah. I share too much sometimes... right?
Shared too much yet?
No?
Well here goes more then...

I'm going on goodness knows how much sleep today. I'm exhausted. Last night I was reading myself to sleep and realized I was wide awake still at 1pm. Oops, closed the book. Tried breathing, counting, peaceful thoughts. Nope. Opened book and continued to read. Then 2pm. Then 3pm- finished a book, LOVED it, didn't help the sleep predicament. The last time I was up ALL NIGHT was when I thought I had lice in July. Uh oh. Jumped up in realization at 4am. Sprayed my hair with these healthy oil stuff and combed my hair for 45 minutes squinting, looking, and checking- repeat times goodness knows how many. Blech. Really made me appreciate the short haircut. Nope, no lice. Yuck. BUT my scalp was freaking out. So itchy. Not sure if it is because my hair is curling back in as it grows a little bit and making it itchy when I lay down on it?? Not certain at all. But I was freaked out. IE no sleep. Thank goodness I brought back to Hong Kong the stuff that could immediately provide me with peace of mind. Yuck. Plus... my hair is falling out. Not clumps. But I'm pretty sure more than the 50-100 strands that can fall out daily- but of course it is more visible in some ways now since it is shorter. Hmm. Chilling out and enjoying hair while it is there... short and easy.

So, I'm done with my oversharing for the day.
I already went to my acupuncturist today. He worked on some energy healing and refocusing of my mind = redirecting from worry to letting go. Appreciated it but basketcase/exhausted one that I am... he made me cry- which is ok. I'm also trying his herbs, shall see. Will show ingredients to my oncologist but my oncologist already gave his approval for herbal medicine for a different Chinese medicine practitioner... so I'm not as concerned about that than I am all these other vitamins/herbs I have to bring in the list of and get permission for before I begin taking them.

I am going with wonderful husband to the local hospital today as well. Letting go of worries and concerns that are out of my control. Shall see how this appointment goes.
Thanks for bearing with me... To those that thought that I overshared, sigh. I warned, right? #gototopofpostandadddisclaimernow

Chemo Reaction- A little documenting

Hope...
for future patients: preventing metastisis- which I'm presently dealing with:
http://www.businessinsider.com/scientists-cancer-spread-health-research-2014-9

So, I realized I didn't share what happened on my chemotherapy day 1 of 12 day.
Here it goes... 7 hours long...
I checked in at my oncologist's clinic and was immediately weighed and had my temperature checked. I lost two kilos which was really upsetting. Didn't think about how I had cut all my hair since the last time I was on the scale, so perhaps some of the weight loss is from hair??
Vampire time- blood was drawn and analyzed.
I checked in with my oncologist who lectured me about losing weight, this is an ongoing conversation... and also chatted about how my blood is, told me many side effects to the chemo drugs that were going to be pumped into me, discussed other things as well. I forgot to ask why he "upgraded" me from Stage 3 to Stage 4 cancer but found out later it is because of the metastasis.

Then I went to his back room. I've had my blood drawn here so often but I always said to myself, at least I don't have to do chemotherapy. Thought that one too soon.
There are comfortable chairs there. Lounge ones... good thing too since I had to sit for 7 hours. The medicine is operated through a machine plugged into the wall. You can't walk around with it!
My wonderful friend Diane who is an incredible support came around this time... she was there the entire time, we have such fascinating conversations... So grateful she was willing to be there, funny that I brought along books and magazines, never opened them.
The nurse was so lovely. Kind. Patient.
I warned her. "I don't like needles. I have to pee a lot. I'm sorry if that creates complications." She was so easy going every time I had to go to the restroom. Just stopped the meds. Removed the line going into my hand and put a cap on the tube until I got back...
First I got a line in my left hand (which sucks, I'm left handed-- has to be that way since the breast cancer and lung cancer both are in my right side).
Then saline was pumped into me to get going.
Then a little medicine was pumped in.
And a little more...
Then around 10:30 the first chemo was pushed in.
Then around 11:30 the next chemo drug.
Then a little more medicine was pumped in. (Benadryl, etc.- only thing that made me wince, that darn medicine stings when it is going in!)
My friend Susan showed up at 1pm. She wanted to visit, bring Diane lunch, and see how I was doing... plus give me a ride home afterwards, so grateful for her time. Super supportive friend.
Then 1:00-2:30 the final chemo drug. It was fascinating to meet a lab technician I'd seen for a year working in the back room on blood analysis and find out he was a Chinese medicine doctor certified and practicing in Hong Kong. He provides his service to my oncologist's patients- herbs, acupuncture, and more... wow. I'm waiting this week to see my side effects and then checking in with him on Saturday for my next round of chemo. He helped out my friend Diane which was incredible.
I ate lunch.
I was so ready to go at 2:30 when the saline was pumped thru again.
That was when the nurse began lecturing me. For 45 minutes. Seriously. My friend pointed out that I started biting my nails during that time. Why yes, I'm sleepy, tired of being in a chair, and ready to go go go... I don't want to hear about side effects now! But for fourty-five minutes I worked hard to concentrate on all the side effects and careful practices she talked about. I thought to myself, I'm better at reading this stuff, please just give me the paper... but I listened too since she would often offer her sage advice as she went over the paperwork. Unfortunately, she forgot to give me the packet (oops) she popped it back into my file record booklet so I will probably run by the clinic this week to pick it up.

After some lectures, I decided to add organic chicken back into my food plan, just treating meat as an appetizer but doing it to get more protein... I'm eating a ton of food but losing weight. I know cancer has a lot to do with it but still, doing what I need to do. A beautiful friend dropped off chicken broth (bone soup) for me to eat... will add some brown rice noodles to it and have tomorrow. So grateful.
I also enjoyed breaking the rules and eating a piece of whole wheat bread today (gasp) with avocado and smoked salmon on it- what heaven it was to eat! So...  there's the update I didn't include in my last post.

Monday- 2 days after chemo was pumped into my veins... I'm having a harder time. Honestly, I'm fatigued, gave in and admitted I was nauseous and took pills, and didn't have as much get-up-and-go energy today. Considered it a feat to eat my meals, shower, and welcome my husband home from Vietnam. He completed the mountain marathon in 12 hours! So proud of him.
I wanted to go to this workshop in the evening after dinner and thought I had enough energy to go and return. Learned a hard lesson... I attended this essential oils workshop for around 45 minutes and realized I was done. I needed to go. So they put a drop of oil on my wrists- Joy- smelled like my grandma, lovely, and I headed out. I wasn't thinking my best. I decided to go to ride the MTR home. Figured I could find a place to sit down and it was only 3 stops. Rush hour. Dream on Debbie. So, I got there, had to stand but found a place to lean and got thru two stops. Then I blacked out/fainted. On the MTR. Many people worried. One woman helped me stand up. I slightly collapsed again and people helped me exit the MTR at my exit. The lovely woman who helped me up walked me over to the guard's station and asked me what I wanted... to call the police? Heck no. (But that's a normal thing to do here.) but I said I needed to sit down. They pulled a chair out of the station for me and for five minutes I cooled off. (Was dripping with sweat.) I then realized I didn't trust my energy level so I called my husband and he came to get me. (Welcome home honey!) I was grateful to be home, humbled, and upset. I chatted with my life coach and discussed decisions, what happened and why. We agreed it was probably a combo beyond just being exhausted- I had started wearing a face mask and felt it was suffocating me. She pointed out that breathing in my CO2 probably wasn't good. I need to practice wearing it at home for a while. I had taken the nausea medicine which can get you dizzy... And I should have taken a taxi home. Lesson learned. The hard way but at least there were wonderfully helpful people around who cared enough to get me to a safe place where I was monitored.

Have snapped a few pictures lately... figured I'd share a few. You can see the clinic and even the meds... not fun but part of my days 11 to go...