So I had a really (stinking) hard day...

Today sucked. Seriously.
Statements first:
1. My mom is a genius.
2. I work with incredible, caring, thoughtful people.
3. I need help when I'm starving and dehydrated.
4. I do not think straight and need help making decisions when I'm starving and dehydrated or simply overwhelmed.
Ok.
I woke up and felt nauseaus..
So I took an anti-nausea pill.
I took a shower and had to lay down afterwards in my closet and then in bed. I wasn't feeling terrific. My husband helped me get dressed. He questioned my determination to go to work.
I thought I could handle it with a drink of protein shake on my way to work.
Not smart, stupid in fact.
I didn't realize how far gone I was. Really.
I got to work driving ok but not swallowing worth a darn, only one sip of protein shake.
I've had trouble swallowing even water the past few days. Seriously. Water. I took a sip of water last night and leaned over to do something and felt the water come right back up.
So... I haven't been drinking well or eating at all for a few days. It took me 3.5 hours last night to drink a mug of bone broth.
Today it really hit me.
I walked up the 10 stairs to get into my school and felt light headed. Wasn't sure what to do.
Walked down the hall. Started to have a ringing in my ears.
Saw a lovely coworker and asked her to help me with my heavy 2nd bag and told her I thought I might blackout. Got to the library office and promptly laid down on the floor at the back of the office. Knew I wasn't doing well. Scared and worried many people.
Some lovely people insisted that I come to the sick room to lay down on a more comfortable bed. I started hearing the fuzz in my ears and got dizzy on the way to the office. Sigh. Two people walked me there.
It helped to lay down. One person after another sat with me and talked.
Reminded me that work will go on and I should go home.
I surely didn't disagree but had a hard time letting go.
One person took control. Cancelled the classes I was meant to visit, told me that two people would be helping me get home with my car so that I didn't have to worry about it. I cried. So grateful. I was just worrying about how to get home and deal with the car.
I was driven home by a beautiful coworker who helped distract me the whole time with easy conversation and another wonderful person followed us.

I'm taking Thursday and Friday off.

My mom came over and flat out told me: "Debbie, I thought about it on the drive over. You are terribly dehydrated and the pain is out of control. You must get fluids in you with an IV, call the dr. now."
I called 3 doctors, ended up going to my new oncologist's office. So grateful I did.
1. I now have immunotherapy scheduled for the first time this Friday, no worries about my condition. "Debbie, you are not in a wheelchair with a breathing machine, you're fine to get Nivolumab. Oh hallelujah.
2. The nurse helped me understand about feeding tubes more. I'm over my fears and concerns and stubborness. A friend told me today "sometimes stubborness can be your worst enemy."
3. The nurse helped me get over fears of pain medication.

I got pumped with loads of liquid, it took over 2 hours and 30 minutes to get the two huge sacks of liquid into me. They also gave me a small amount of pain medicine which helped me...
I started feeling a tiny bit better around 45 minutes in... started feeling more human after 1.5 hours. Wow was I dehydrated. I now know that you lose a lot of weight when you're dehydrated. I weighed in at 114 pounds. Started crying when I saw that until I was told about dehydration impacting weight... sigh.

Pain is still there. A little more dull. But shall see with the help of the immunotherapy on Friday. Shall see about the feeding tube. I'm hoping it will be placed tomorrow but I'm aware it is a long shot.

I had an explanation about things that wasn't wonderful to hear but I now understand a bit more about my esophogus... so the specialist last week brought  this up but I didn't understand very well... there is space in my esophogus to swallow. The specialist and the dr both think that it is motility vs mechanics. This means nerve damage (possibly from that last round of radiation in the area) might be affecting my ability to swallow vs. tumors pushing... which means I might have trouble swallowing for a long while even after tumors shrink.
So... good thing to get the feeding tube. The struggle and pain I go thru swallowing presently sucks. Shall see.

So I'm home. Still struggling to swallow. Still dealing with pain but feeling immensely relieved to simply have things a tiny bit sorted and not completely feel like junk. So frustrating to me.
Letting go.

Not the most positive post but got thru this cruddy day with my mom monitoring and helping me out, my dad taking care of kiddo after school, amazing coworkers sending me messages and support, and more...
Very glad to be home. Resting. Looking forward to immunotherapy... my poor veins... but I have a lot of hope.
Thanks for journeying with me...

Mental Rest and Ups and Downs

Today I learned about Yoga Nidra and appreciated a friend coming by to lead me through a session. Fascinating, relaxing, peaceful. Recommended. I'll be trying it out by youtube videos as well as looking forward to working with her on it as well. Also loved catching up with my best friend thru Skype... miss her presence here but reassuring that we can always catch up.

Dealing with insurance frustrations... don't you love it when you hear those words "Um, I'll have to call you back..." and then you don't receive that call? Meh. Not worth my energy, have things ready when I do actually receive a phone call back... Same with emails as well... out of my control, letting go as best I can.

Appreciated reading this article...
http://www.marcandangel.com/2014/11/09/9-negative-thoughts-that-push-people-away-from-you/
Mostly reassuring since I haven't dealt with these thoughts very often.

This afternoon it happened AGAIN. ECH. I was laying down resting and got up to go to the door to chat and pass a book to a friend. My husband was there too. I got a loud buzzing in my head and fainted. My husband caught me... such a confusing thing. I think I got up too quick. I also think that the anti-nausea medicine is the cause for this but not certain... went back to bed and rested. Doing fine now but really glad I was taking it easy... especially glad I wasn't up and taking a walk. I get that for this time I got up too quick... the last two times I was walking around for a while and then standing still for a while and then fainted. Hmm.

So, getting along, my worst day predicted after chemo, know things are cumulative, but not worst situation, grateful for that at least. On the countdown of treatments. Forgot to mention, I gained weight again this past week (woot) - I still find it funny that I'm celebrating weight gain but so be it. Part of life at this time.

Here's two Yoga Nidra YouTube videos I'm planning to make time for in the mornings.
http://youtu.be/E4fO1istXvo - Yoga Nidra for beginners
http://youtu.be/WN6q9xQHojI - Yoga Nidra for intermediate

Fainting ie increasing stress

Just love orchids... nature's beautiful art.

Hmm.
So I was taking it easy the three days after treatment as usual... been warned to pace myself and that things were cumulative. Well, learned about that today. Fourth day after treatment... Thought I was doing well and for a normal person I guess what my friend Sheli and I did for the day was tiring and I didn't read my signs...

I hit that exhaustion level after 4.5 hours of wonderful adventuring around Hong Kong's Peak, the Gardens (Zoo/Plants) in Mid-Levels and then walking down... We were waiting at the bank and I was happy to finally bring Sheli there after days of missing the bank's open hours... standing in line did me in.
Sheli's gone over my triggers and we've talked about how I need to trust her and her intuition since I'm not reading myself well... she could tell it was time to go home but I was being stubborn after standing in the line at the bank, when I admitted that I was fading we were only three people before it was our turn to be taken care of... by the time I was in front of the teller I was asking for a chair, putting my head down on the counter and then Sheli and a nice guy next to me were catching me as I fell. Ech. Can't believe it happened again. Fainting... Just pushed too long and didn't read the signs. I honestly do black out. Lose a few moments of time. And then when I revive I'm normal, wanting to finish what I was doing and get on with the day. Can't explain better... I certainly needed to go home and take a nap (which we did) and taking a taxi was the order, not choice, which was good since by the time we were going up the elevator to the apartment, I was rapidly fading again.

But besides that, it was wonderful to watch how Sheli experienced riding a double decker bus up to the Peak, tried out a new restaurant, enjoyed beautiful views, rode the Peak Tram down to Central, explored and looked at gorgeous flowers at the gardens, and then walked down for a while... really great company and walking time. Just need to watch and pace things much better. Draining myself and overtaxing the body is not the way to heal. Trust me, I know this. And if I forget, I have many that are reminding me.

Enjoyed Qigong class tonight and chatting with my life coach as well. My life coach pointed out that the antibiotic I'm on for my scalp may also make me susceptable to becoming dizzy... so to be extra careful since that had to be added in this week. On top of getting three drugs this week, earlier treatment, etc...
Still appreciating the videos shared at http://thetruthaboutcancer.com/ -tonight I learned more about natural practices for cancer treatment... some really curious/interesting practices going on around the world...

One glimpse of Hong Kong up at the Peak...

Patient friend Sheli, we were almost at the bank...

Another glimpse of Hong Kong on the Peak.... love the green...

Thanks for journeying with me... still appreciating life's journey, taking it day by day...

Over the slump? Protests, scarf tying, food, and more.

Allowed myself down time. Felt good.
Simply rested and relaxed, read and watched shows...
It's been a bit tumultuous here in Hong Kong watching the newsfeeds, kiddo home (bonus), schools closed to students- many colleagues working from home because it isn't easy to get to work with road blocks, trams closed, MTR station closures, etc. My husband has gone into work each day but this week was odd anyways since there's Wednesday and Thursday public holidays and Friday staff training day. So, my son had no school Mon/Tues and won't have school again til next Monday... he isn't complaining. We're lucky to have some of his friends around for distraction and overnight fun.

If you don't know what is going on here, there are a few articles I found helpful about these pro-democracy protests (peaceful and organized, I'm not going out in them- too many germs but am in full support of Hong Kong citizens speaking up for their right to a democratic election instead of what has been decided in Beijing:
http://blogs.wsj.com/chinarealtime/2014/09/28/hong-kong-pro-democracy-movement-gets-global-support/

There are many videos and straightforward reporting pieces. Honestly, the tear gas really scared me that first night of protests, made me worry about escalations with rubber bullets, made me think about Tiananmen Square, etc. but it has been peaceful civil disobedience since... Some friends are collecting water, ice packs, umbrellas, and more for the students and adults protesting. Other friends joined in the protests last night and today. There is a beautiful, caring, hopeful community here in Hong Kong and I'm grateful to be a part of it, even though I'm sticking inside and protecting myself from germs, etc.

My sister continually has shared touching, inspirational, and thoughtful posts with me on a daily basis.... and also some yummy recipes! Here's one with multiple recipes that gave me hope for new yummy food solutions:
http://bembu.com/homemade-protein-bars

I also appreciated that she sent me two how-to tie a headscarf videos. Both are pretty reasonable and doable... Thank you so much...

and

So... besides protests, family/kiddo time... I've been really quiet the past two days. Sunday was a wonderful day where I was just packed with energy. Monday and Tuesday were both "take the anti-nausea medicine NOW" days... every 4 hours. In the evening on Monday I didn't think I "needed" it and then my body freaked out two hours after I was supposed to take it with shakiness/almost fainting- in my bathroom, not in the MTR thank goodness... so I'm still figuring this all out. I do so hate any kind of medication but as a friend said to me, the fear of throwing up will get you to take that medicine!

Wednesday has brought this public holiday, a wonderful lunch out with friends, no anti-nausea medicine, wonderful phone call with my sister, and family time. Grateful for every minute I have... happy to be doing ok. Not pushing myself.

Watching shows here and there and laughing my way thru things. Decided that going to the Laughter Yoga session today (would have been right when I'm writing this) was a poor decision since it would have me on the MTR for 45 minutes plus taking a mini-bus somewhere over on the Kowloon side of Hong Kong where I'm happy to venture sometimes but I also have a talent for misplacing myself.... so I am hoping that backing out 24 hours in advance was ok and I'm happy to laugh with a funny show instead. I'm also beginning to read and really enjoy a book by Thich Nhat Hanh called You Are Here: Discovering the Magic of the Present Moment... Nice to dive into an adult book about mindfulness. I'm balancing it with a YA fantasy book which has been fun to begin called Keeper of the Realms- Crow's Revenge by Marcus Alexander.... author visit in the spring.

Food-wise, I've added back chicken, still treating it as an appetizer but I can feel the protein hit much faster at times now. Makes me happy to be giving my body what it needed. I pray I don't lose weight this week but will accept whatever comes with this treatment and know I'm trying my best. Plus I'm not having as many upset stomach issues lately... the chinese herbal medicine from my acupuncturist might be working! (I'm trying to be consistent about drinking it...) Plus I'm drinking a tea made from fresh ginger, tumeric, and peppermint tea leaves... that's feeling healthy and balanced. Drinking that one accompanied by water throughout the day. Really keeping my fluid intake up up up.

Creative wise, I had fun with two things- one- I have an art pad to doodle in now... liking that outlet. Also, I picked up yarn and a crochet hook, will be trying that out on Saturday. My husband is coming with me to chemo treatment which will be helpful. He and I love watching movies and shows together. I have 2 drugs coming this week which means around 4 hours or so... as long as everything is fine.

I also tried out something that a friend/former parent at my old school suggested. Using slippery elm bark powder mixed with coconut oil for a lotion/cure-all for my skin. Her directions were: "Mix about 1/4 cup coconut oil with 2-3 tablespoons of slippery elm bark powder and use it as a lotion."
Done. Used. Appreciating physically and mentally.
Still doing that coconut oil pull and mouth rinse throughout the day... anything to protect my mouth and body...
Not sure what my 30 year old self would think about all these extra things I'm doing but I'm glad to have outlets for expressing myself, options for treating myself, and good doctors helping me through this experience. Here's to a better day. Tomorrow is my birthday, 41, oh boy. Many family and friends have asked me what we're doing... my answer was, depends on energy! But I do know the kiddo is going for an overnight fun time with a favorite friend in the afternoon, so I can have date night with my husband! Hoping to get into Jamie Oliver's new restaurant that opened up really close to our apartment and perhaps go see a movie like Mazerunner or something... Love time with my husband. Feel lucky to have these opportunities.

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...