Well... clinging to hope

Choosing the temperature of the air being
pumped into my hospital gown.

Had the endoscopy and was disappointed. My surgeon decided once he was in my digestive tract that a stint wouldn't stay in place. So nope. No relief from the food hell I'm presently in. He strongly encouraged me to get a feeding tube set up. :( I said no. I'm going to try try try to eat enough when I can eat to maintain and gain weight. And I hope that when I start the immunotherapy drug the tumors will shrink and lessen the pain/pressure. Shall see. Family and I are thinking on creative fatty foods, especially drinks and soups. Shall see...

Serious me... Just a had time smiling at a hospital...

Ever see a hospital gown 

I honestly did melt down for a while last night going through doubts and regrets over my stubbornness and how the feeding tube could have been put in during that procedure... money, going thru the procedure again, etc. Oh well. Debating and hoping still. Shall see. Hoping for that immunotherapy to help me... trying my best to stay positive. Might give in eventually to a feeding tube but perhaps one that is actually through my nose vs. another incision/tube sticking out of my body.

Still heartbroken by cancer taking special people's lives and impacting other people's lives. Made the mistake of watching a inspiring but upsetting movie- The C Word.
http://www.imdb.com/title/tt3568218/

So there's good things happening lately...
1. My husband got a job and begins next week, hooray.
2. My parents are supporting us for a few weeks with our kiddo while we transition day care situations.
3. My son was just accepted into an after school care program that will give him a lot of practice in Mandarin, thrilled since we knew that his knowledge was fading quickly since he didn't have any new practice in talking Mandarin in months. He starts in November and is open to the classes, phew.
4. Soon enough I'll get to go on immunotherapy that will hopefully knock out these tumors... I know it is a stretch but miracles happen, every day.

Hoping, believing, and loving every day I'm alive, even the tough ones...  thanks for journeying with me...

So you shouldn't smoke at the hospital

I felt very outspoken as I was waiting after radiation today for the bus. (Day 12, 18 left to go. When I look at a calendar, I have less than a month's time left now. Next Monday I'll be half way done.)
I was wearing my mask (as always) and waiting patiently... listening to an audiobook (very humorous memoir called I don't know what you know me from by Judy Greer) and suddenly a waft of cigarette smoke infiltrated my nose. Immediately I turned and looked at the people behind me... no cigarettes. Looked over to the opposite side of the waiting area, there he was- this French guy who came out earlier talking loudly on his phone... I yelled out, "PLEASE DON'T SMOKE." then pointed to myself "CANCER!"  He said sorry and moved a little away from the waiting area and closer to the 'No Smoking or Possible Fine of $50,000 sign'. Security walked out to talk with him and he quickly put out the cigarette and left the area.

Now. I hate cigarettes. Always have. I learned to hold my breath at an early age around them. My mom was a good influence on me for my ultimate hatred of all drugs (I'm happily an innocent one who never tried anything, was a member of Students Against Substance Abuse and other clubs in high school.) I blame cigarettes for my beloved grandmother's death too young. I was so proud when my dad finally quit his battle with cigarettes while I was in college (he never smoked in the house)... I also was tremendously proud when my brother in law quit smoking, but don't think I ever told him...

Since I was initially diagnosed this third round of cancer with lung cancer I totally was freaking out about cigarettes even more so than usual. You see, everywhere around our apartment complex are cigarette smokers. Seriously, walk down the steps, smokers, stand in line for the bus- smokers, walk down the street - smokers... Hong Kong has a terrible cigarette problem. I'm absolutely shocked at how many people smoke. And I worry for those people. I worry for everyone getting poisoned my second hand smoke. I am also personally concerned about my son who has adjusted to mom being a nutcase and he holds his breath too at times... We're up pretty high so I don't worry as much about cigarettes in the apartment (but we do have air purifiers). I will look forward to walking into clean air in Oregon though when we move home in July.

Did I mention that when we were in the Philippines there was a freaky moment when we were getting off a ferry and my husband went to get our luggage and my son and I were catching up to him and a person smoking actually touched his cigarette to my son's arm? Freaked my poor kiddo out (and me) and made my husband furious. Kiddo's burn healed quick, I had quick ointment to pop on him, etc... but man do I hate cigarettes.

The hospital is a place where I make that simple assumption that I should be able to breathe easily without worry of cigarette smoke. But. When I walked out of the Tomotherapy room to go change into my street clothes, I was quite surprised to have a breath of cigarettes waiting for me- there's an outside door, guess some of the people took a cigarette break there... so when I waited for the bus and was assaulted? I wasn't shy.

It has been an ok week so far. A wonderful friend came and picked me up and stayed with me on Monday for treatment and the clinic was running 20 minutes behind! We enjoyed the chance to sit and chat for a while and I was so grateful to sit in her beautiful car and get a ride home instead of ride the bus. Tuesday I had yoga nidra and received a ride to treatment, so grateful. Wednesday (today) I got a ride from a wonderful colleague who offered at lunch... appreciated that chance to chat with her as well.

I'm still enjoying qi gong, such a healthy practice and I find that the breathing exercises are helping me out with the random spastic coughing attacks I've had over the past three days. The main woman I chat with at the clinic reminded me that they are radiating the center of my respiratory system so coughing is a side effect that can be tampered with medication only, not water... will ask my oncologist about this on Saturday. Acid reflux is another side effect I'm watching for but gratefully not experiencing... yet.
Teaching and coughing don't mix too well. Reading aloud a novel and coughing don't work well together either. Sigh. Still enjoying work though. Having fun planning out literacy week, author visit, book character day, and more presently. Thank goodness the computer system at work is back on track. Relieved for that...

Enough brain dumping for today....
Thanks for journeying with me...

Ambulance, surgeons, wigs, police, and more

Presently, I'm quite glad that I have a fully booked week. It is helpful to distract myself at the present time.
I enjoyed free time yesterday in the morning with my son and husband when there was the T8 (typhoon level 8) warning hoisted. Eventually my husband had to head to work and the kiddo and I had an appt to get x-rays and sutures out at the surgeon's office.

Working on my patience:
I've noticed that my patience is wearing thin when I have to talk with medical people on the phone. It helps to remind myself that it is a short time period that I have to deal with it and "this too shall pass". Sometimes I think these complications are good for me to work on my patience skills, breathing skills, and communication skills...  Reminding myself how many people these individuals talk to is also helpful- if I'm kind/nice, will help other patients out.
For example:
On Monday afternoon, I got a call from my surgeon's office. They wanted to change my Tuesday appointment time from 3:45 to 2pm. Well, that was confusing as the appointment they wrote down for me was at 11am one week before. After sorting it out, I was grateful that the appointment was at 2pm since there was that T8 that came in and had most everything closed in the morning. They called two hours later to confirm the appointment that they called earlier about and took quite a bit of time clarifying everything, I grew impatient about this since I already talked with them two hours before about the same thing. Also, I was told to go at 1:30 to get an x-ray of my lungs done at another location. When I got there at 1:05, the office was closed for lunch from 1-2pm. I chuckled, called the surgeon's office, and was told to wait til 2 and then come over immediately after... It all works out. I was able to cross the street and hang out at a favorite bookstore and had unexpected relaxing time.

Surgeon time:
Visiting with my surgeon was ok. He's quite pleased with me and my progress and is now "done" with me. Good guy, talented surgeon. Asked me about new diagnosis and when I mentioned how my oncologist said that the chemo/radiation only had a 40-50% predicted success rate, he simply said "try to be more positive, I've seen patients like you before successfully battle cancer and live for a long time." I explained to him how I was staying darn positive but that he asked about the diagnosis and I was simply filling him in... but I appreciate his positive support. He gave me some ointment for the three scars, removed the final three sutures, and sent me away with many instructions. Really glad that he's happy with the progress and also grateful to be finished visiting yet another doctor. Must mention, I can recognize myself now by x-ray. Since that lower right lobe of my lung was taken out, my x-rays look quite odd. Interesting to see the changes already in three weeks since the surgery.

So, working on my skills, taking deep breaths and more...
Qigong:
At the end of the day I was able to have some lovely women over and have a class in Qigong, reminded me of Tai Chi with deeper breathing and energy focus. I'm so happy that this will be a weekly occurance, just wish I'd started this up years ago... Complimentary to yoga. I put a few YouTube videos with Qigong exercises on that page to the right of this blog post called Healthy Practice Videos to Visit.

I'm happy that I got preregistered for a yoga class and chanting class thru CancerLink. Those will start in October. Hope I have energy to go to them every week... will be healthy outlets I think.

So... appreciated accomplishments for the day.
Hair- I like touching it, soft and all that but when I look in the mirror I'm not so fond of it yet... but I'll adjust. Have had many supportive friends tell me how much they like it.

Insurance fun (NOT):
Today I met with my school foundation's human resources representative about insurance coverage. She was reassuring but I didn't receive any definitive answers... what a surprise. I have paperwork requests I'm setting up for back-up insurance and more. Shall see. Grateful there's someone supporting me there.

Overwhelming packages:
Received the prettiest hats and scarves in the mail today. Thank you to my lovely friend for passing them to me. Shall picture model soon enough. This afternoon I went to CancerLink to meet with the wig specialist to learn a little about wigs and also find out about how to wear scarves. I was really thrown trying on different wigs. Really thrown. Didn't recognize myself and wasn't so thrilled. But the woman was so kind and patient. I borrowed a wig... it is ok. Plus I received a nice pink hat and an odd skull covering for keeping me warm, protecting me from itchy wigs, and when my hair starts falling out I have another odd head covering that helps me avoid hair falling all over when the chemo effects begin...
Yesterday a friend also passed me her turban/scarves that were created for cancer patients. I'm happy I have multiple options, a good thing.

Began crying (crying is ok) this afternoon when a care package arrived from some of my beloved librarian friends from Beaverton, Oregon. Working with them was incredible over the years... dear friends... Really touched to receive so many special letters, treats, personalized gifts, and much more... I have many things to use for chemo treatments and many special things to boost my spirits. Really really overwhelmed by that box of special gifts, thoughts, and love.
*I just read in Crazy Sexy Cancer Tips by Kris Carr about how I should create a quiet place to go each day. She had one corner of her home with a cushion, candles, and things that inspired her... Think some of the care package gifts will be there.

Ambulance and Local Hospital Experience:
Tonight was a little tumultuous. Our live-in helper (my lifeline for almost everything) collapsed in pain after dinner, we're not sure why, and we called an ambulance. I rode with her to the hospital. She felt a little better after 45 minutes but then we waited an hour and a half before she was released... she has to go to the doctor tomorrow. I suspect she has kidney stones but also she's had other issues in the past and usually it is food related. While we waited for the ambulance to show up, my husband quickly zipped out to take our dog for a walk. He went to a local money exchange place and when he talked to the person about getting Vietnamese dong. The person tried to give him a poor exchange rate and then refused to give him back his money. He called the police and the person gave back money right before the police showed up... He filed a complaint. Our son was over at our wonderful neighbor-friends in the same apartment complex... Thank goodness we have friends to lean on that have a kiddo his age. He was happy to hang out with his friend.
I got home with my helper at 10pm. Glad she got care, medicine, and is now resting. Scary to see someone you care about in pain, curled up... Appreciate that an ambulance ride and emergency room care total $100 Hong Kong Dollars- that's $12 USD. In the US how much would it be? Crazytown costly, I know... But I didn't feel like the ER doctors were really knowledgeable. You must be your own advocate there. I noticed that my helper spoke up and got a referral letter so that she could go see a regular doctor... That was my first experience in an ambulance in Hong Kong (or ever for that matter) and also in a local hospital. I've been in four private hospitals here in Hong Kong for procedures. I tell you, drastic difference. I was quite entertained people watching for two hours- drunk people, vomiting people, broken ankle people, and more... did I mention I asked for a face mask immediately?

Marathon man:
So, why was my wonderful husband getting Vietnamese dong? He's going away! Tomorrow! For 5 days! I'm getting my first chemo treatment right in the middle of the time he's away! But I refused for him to cancel anything. He is a marathon person, one thing we'll never share beyond my support for him. He's going to Vietnam to participate in the Vietnam Mountain Marathon. Running. A marathon. In the mountains. Seriously. This is like his birthday present to himself since that's coming up the day after he returns. Curious? Here's a link to his adventure:
http://vietnammountainmarathon.com/the-challenge/
Really happy we live in a place that gives him a chance to run marathons like this. He's done marathons for a long long long time... and I admire his tenacity. Shall miss him a tremendous amount while he's gone though!

Tomorrow? Trying out a new acupuncturist. Crossing my fingers he works out for me... Have had some not-so-fabulous experiences so far here... they are expensive appointments. Want it to be worth it.

Enjoyed watching this video, interesting study: Cell Nutritionals: Pomi-T Study - https://www.youtube.com/watch?v=383bzFpwJ0k