Stanley Market has a vast array of selections, quite distracting and entertaining!
The day after the adventure ie. fainting, Sheli and I both hit 10,000 steps on our Fitbits but we paced things very carefully. It was fun to show Sheli Stanley Market and my favorite restaurant over there plus we rode the Star Ferry in the evening and met up with one of my favorite Hong Kong friends, shall share about that on my other blog though... days seem to be going by quickly. Now today I didn't hit that many steps, Sheli did, but we had quite the adventure locating a building in Admiralty so I could get to my chanting class. Found it and was only 20 minutes late (we gave ourselves 25 minutes to find it, we were really puzzled... I now know how to get there easily- phew.)
So, today was the beginning of two classes that I've registered for through CancerLink... Chanting. It was something I had very little knowledge about. The chanting class was almost like a sing along for part of it, almost like a yoga beginning pose for a while, and also lovely chanting for another portion... I have quite the packet of papers from the class and will look them over during the week. I think I honestly appreciate Qigong more. Might be because I'm familiar with it and more comfortable... The most interesting part of the class for me was the closing chant we did because I noticed it was recorded/played from Zen Master Thich Naht Hanh whom I just finished reading his book You Are Here: Discovering the Magic of the Present Moment. Funny how things are interrelated sometimes. I appreciated the instructor's sentiment, perspective, and style, shall see how next week's class goes. The other class I'm going to attend is yoga on Friday. Shall see how that goes. I love yoga, just hoping it is a style that works for me. I really miss the Iyengar yoga form that I did for years...
My mom sent me a birthday present a while ago and it took over three weeks to arrive... but arrive it did today! Was wonderful. I now have numerous new headwraps that work well with scarves and also pretty flower clips as well... what a lovely treat. It is nice to have new options, feeling a little styling... I do love my pink hat but now have many more choices and all so breathable. THANK YOU MOM, I LOVE YOU!!! Also, thank you to Claudia for the lovely scarf I wore today with it, received many kind compliments from fellow cancer patients at the Chanting class...
For those who want to know more about the head wrap, it is a wonderful creator who makes them and sells at Etsy- Suzanne Petrosino-Goldstein, you can wear the wrap many ways, I'm wearing it as a turban but it can also be a head covering, wide headband, or skullcap. My mom also ordered for me this cooling strip for me to wear under the head wrap if I'm feeling hot... it has little microbeads that keep it cool for a while... very nice gifts to have.
Felt this morning that I was a science experiment with all the hair I was washing off my head... had dealt with it falling out constantly the day before and it was honestly upsetting... Sat and ran my fingers through my hair seeing more and more fall out with each light touch. I just didn't want to go to bed and find huge piles of hair in the morning. So, I contacted my hair stylist (who is out of town) who connected me to someone who was kind enough to shave off my hair. I contacted my friend Amy who attended the haircutting four weeks ago with such care, friendship and support. She dealt with the shaving with good conversation and distraction and took a few pictures too... Good to have her with me to go to a nearby wig shop to check on wig possibilities and helping me see the wig that made me feel like me... a little bit over many other overwhelming choices. What a wonderful friend... What amazing friends I'm surrounded by around the world... feeling blessed.
I gave my son time to be a little in charge before getting it shaved... had him choose the scarf I'd tie around my pink hat after the cut... then when I got home I was wearing hat and scarf, he was happy and then started sniffling about not wanting my hair cut off... but then I asked him if he wanted to see my new wig or to see me bald. He chose the wig and LOVED it, said it was too long since he was now used to shorter hair (hah!) and was comfortable, could tell it helped him. Then at bedtime storytime he told me he was ready to see the baldness... and he was fine. He pet it and then did comparisons between my husband's scalp and mine. I'll be bald or have a fabric cap on at home and have fun with the wig, hats, and more for leaving the apartment... I like options. As I've mentioned before, I'm all about balance, not too much of one thing, just appreciate options. Really good to have a wig that looks like "me" now vs. one I borrowed from CancerLink that made me wince each time I tried it on...
My husband and I chatted as well. He's ridiculously supportive. I love him... so much. He began singing Randy Travis's song lyrics from one of our favorite wedding songs we danced to- Forever and Ever Amen - "But honey, I don't care, I ain't in love with your hair. And if it all fell out, well I'd love you anyway" - teared up but loved him more...
Here's that song for those who don't know it:
Thank you to all who donated to the Give Forward Donation page for me, so grateful and overwhelmed, really overwhelmed, in a good way. Relieved as well to be honest...
My husband went with me to the chemo treatment today, two dose day, and it was good to chill with him (I love hanging out with my husband, a pick me up every day) and be distracted from the powerful poison that was pushed into my body. Also, having him at the quick oncology appointment was a godsend. He asks the questions I always forget to ask, like: When is the next PET scan? Not til 12 weeks go by? Woah. I thought I was due for one in another week... was dreading the bill for it (and also the results)... All scans are out of pocket now, hit the limit on insurance three days after it was "refreshed" at the beginning of the school year. So, glad to have it at the end of chemo treatment... gives more time for the chemo to take action... kill those damn cancer cells, please! What do you mean I possibly have to have more than 3 rounds of chemo in addition to radiation afterwards? All depends on my results... he might want to have one more round... then my oncologist slipped in that sometimes treatments go for 6 months (frickety frack!)... I will take a while to process these tidbits. What is the plan with radiation? So radiation is worrisome since it is so close to my recent May radiation on my right breast, my oncologist thinks it is possible to do it... the local hospital oncologist at the hospital doesn't think it is necessary or safe... but he's known my case barely the amount of time that my oncologist has... not seeing local hospital oncologist again until November. (So begins conflicting information to think on between different doctors. Grateful to have the option and chance I suppose...)
**Hong Kong update, on the way to my treatment for chemo today, my husband and I took the MTR into the Admiralty station. It was tense there. Super tense and a little scary. There is always a huge load of people but then I noticed 8 security guards hovering in the main pathway near MTR shops around this loud group of people who were yelling at others, looking a little vicious, and worrisome. I quickly walked by and my husband thought they were just tourists. Me? No. Honestly, I know there's groups of people who have now been hired to be rabble rousers and create chaos and violence in a peaceful situation. It upsets me and disappoints me... I also know that there is a lot of information flying around that is purposefully being shared to confuse and worry others. Not much else to say about it. To-from treatment was safe for me and my husband was there if there was any risk- which there wasn't... but boy have police and security increased near the protest sites! For those who know nothing about this, sharing another video, this time from a favorite Vlogger- Hank Green, appreciate his information, simplified and not completely accurate about long history of trying to have democracy here in Hong Kong but insightful overall.
Was thinking about how grateful I am for advice I've read and tried... I've received some good advice over the past year with my cancer experience.
1. If you have long hair, cut it short so that it isn't as upsetting when you go bald from chemo. ABSOLUTELY BEST ADVICE for me.
2. Save your eyebrows with contact paper in case yours fall out, the location of eyebrows is hard to remember once they're gone... my oncologist doesn't believe I'll lose my eyebrows- ok, wouldn't complain, shocked when he said this... but still.... anyone have contact paper?!?!
3. Dig deep and find what will bring you to the chemo treatment every week. For me? Honestly? People. I love people and really appreciate companionship, even if I fall asleep, I'm so grateful to have someone there... especially my special friends, husband and... ANTICIPATION my best friend Sheli from Alaska who is visiting in a few weeks and my sister Rachel who is visiting soon after her... so so grateful both will visit Hong Kong and support me and my family and excited... especially hopeful for a little energy during their visits but also will just enjoy quiet time with them as well... two people I've loved and adored for so long... coming here. There's huge anticipation there... huge.
4. Join CancerLink Hong Kong and appreciate the support, don't be deterred by the huge focus on Chinese members. CancerLink gave me a list of wig shops and then told me reasonably priced places... went to one today and appreciated having a friend with me for advice... thanks Amy.
5. Enjoy food and find more ways to get it in your system. I did a happy dance when the nurse told me today that I finally put on weight. Has been a long time- months- since I heard those words. Never knew I'd be so excited to put on the pounds. But honestly, phew. Even more compelled to eat that chocolate cake my friend lovingly made for me for my birthday and Happy Cow ice cream- balanced with vegies, chicken, fruit, fresh juices, etc... I know, all a balance.
6. Listen to what you want and manage other suggestions as you wish. For example, my oncologist thought I was NUTS when I said I was shaving my hair today. He said, "I wouldn't recommend that, you have so much hair, might not all fall out..." I flat out said, "It feels terrible to touch my head and have my hair falling out so much plus it is so itchy I need to free myself now. Why would I wait in hope that it might not all fall out?" He patted my shoulder. He's dealt with many stubborn patients. I follow his directions for medical rules, etc... but personal choices? My realm, respectively.
7. Bring art back into your life. - My beautiful sister brought this up and I thought about what I've enjoyed in the past... I do have an art background, endorsed in Art Ed. (along with Elem. Ed/Special Ed) way back when with more a focus on Art History to be honest... and my favorite things? sketching, fabric arts, origami, and crochet. So... little by little adding them back in. I brought crochet back into my life- brought to treatment today and then realized that it was stupid to even hope, can't move my left hand during the infusions! So I worked a little on crochet this afternoon, happy day. Decided to follow the fantastic illustrator/author Debbie Ridpath Ohi (I interviewed her on my other blog, brilliant and talented woman) on her #Inktober challenge to sketch something each day and post on Instagram... really enjoying it as a new routine... random, low expectations, etc. November is PiBoIdMo- Picture Book Idea Month- another practice I've done for two years, some interesting writing ideas have come from this-- writing is an art in my opinion by the way...
8. Embracing the humor. Laughing with friends who've shared hilarious pictures, videos, and so much else, really grateful for the consistent support in bringing humor into my life. My mom is sending fun videos, my dad is too, and my sister is the neverending source of support, usually through fabulous Pinterest ideas. If I'm feeling down, I do honestly go to finding humor again. Sometimes enough people's frowns on the MTR path will drop me down, funny how I'm influenced by other's moods... so I've watched a few videos friends have shared many times to lighten my mood.
I have many others suggestions I'm grateful I tried... almost like writing my daily gratitude journal here... but seriously, I'm grateful, growing, supported, appreciative, and feeling loved and blessed. Thank you for ALL the support.
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.
So, we have a sweet fourteen year old dog who I adore. I love snuggling with her. She's adorable. Seriously. She's been my constant companion but is honestly daddy's girl. I'm good with this. You see, I'm a bed hog. I don't want a loving dog sleeping between my legs, chin on my ankle or any other sort of endearment, I need my space... (My poor husband.) And so... she knows she can snuggle with AH (Amazing Husband) any old time she wishes, just as long as she shifts a little when I'm around.
Why do I bring her up? Because she's calmed me this past week. Snuggled. Watched over me. And been the sweetest thing... Quite grateful.
Here's the look she gave me most of the time...
'Are you going to pet me? Notice me, I'm right here!'
So, thinking about losing my hair totally blows. I've been appreciating it every day for years... Sure, I hated those curls for a number of years. Especially during my afro hair stage in middle school... But for years now, I love these frizzy, hard to control, boinging curls... sigh. So, I'm approaching the next round of this fight carefully. I'm working on my food regimine with a focus on gaining a little more weight. Enjoying the opportunity to have some healthy walking every day... and thinking about how to deal with hair loss. Now, I know, I'm not finding out my chemotherapy protocol yet but I am trying to be realistic here... It is more than likely that I'll lose the hair. (Not to mention my eyebrows and eyelashes, yikes!!)
A lovely friend shared with me a hat that she thought worked well during her chemo treatment... got me on a mission. A few days later I found a hat that could cover my head... found two actually. And a scarf... Thank goodness I found them when I was taking a walk with a friend so I could get her opinion on them, there were so many choices in the market we were at! I was a little overwhelmed but successfully chose two.
So my dog. Why did I bring her up? Because she barks at people wearing a hat. She barked at me ages ago when I came into the house wearing a hat and then quickly stopped... so I thought I'd better wear the hat for a day. For myself to see if I could handle it... for my sweet dog so she sees me wearing the hat before I really have to wear it. And also for my son, so that seeing me in a hat or other head covering becomes a little more natural before I deal with chemo side effects more drastically.
Wearing a hat is hot. Especially in Hong Kong where the temperature is in the 90's plus HUMID. I feel like I'm hiding underneath it. But kiddo and dog didn't even blink twice at me wearing a hat. It was helpful a little bit with the sun glare but overall, meh, ho hum hat. Not so excited about that... Goodness knows how wearing a wig would feel. I'm looking into it all now though so that I can feel like I'm taking control, addressing what I can vs. feeling angst over the unknown.
My surgeon took off two of the three bandages on me today. It was freeing and honestly a little scary. He didn't want me to put on steri-strips to protect the skin while it healed which I had to do after the lumpectomy/lymph node check during round two of operations/fighting cancer. Odd to have someone who simply says, you're healing, looks healthy and fine. I told him about some of the side effects I've been dealing with and learned that I'm normal. I'll take normal I guess. He offered me cough suppressant but I turned him down. He offered me anti-inflammatory but I turned him down. Pain isn't too bad and the cough isn't keeping me up at night. The less medication I have to put in my body, the better. I'll see him again in another week, that's when he'll remove three sutures and the final bandage.
I received more lab test results from him and it really does look like this third round of fighting cancer is actually NOT LUNG CANCER but instead another round of fighting cervical cancer that bounced (my word choice) into my lung and lymph nodes. Officially, I'm expecting my oncologist to tell me in two days that I have metastatic cervical cancer in my lungs. Meh. When I read about metastatic cancer, I became quite concerned about my prognosis. Will I live more than 5 years? Can I beat this? What will my quality of life be? My doctor has calmly walked me through things so far... Accepting that I need to deal with this day by day. Here's a little bit about metastasis: http://en.wikipedia.org/wiki/Metastasis - Yup. I referenced to Wikipedia... bet my librarian friends are laughing... But it is in normal people speak vs. so many of the other sites I've researched and read! So, I'm concerned about how well radiation will kill these cancer cells vs. what my oncologist was happy about before with the lung cancer prognosis... and how well chemotherapy will help... and which type of chemotherapy will be prescribed... so fixating on wearing a hat- a good distraction.
It was a wonderful day today. I Skyped with one of my best friends, spent time with my sweet son and took a great walk with him, and also chatted for a while with my wonderful Rabbi who is introducing me to someone who might teach about Qigong, interesting practice. I chatted with my life coach tonight which always feels like an inspiring blessing. Plus my son gave me a double high five for getting all three balls in the breathing practice tool up simultaneously. I was proud of myself too. He said I need to practice more though so it becomes consistent. (Love that my kiddo is finding goals for me.)
Me in the slow hot elevator at the beginning of my wandering about day.
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