'Bye hair, so grateful, kiddo sharing and Hong Kong update

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.

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

Preempting Hair Changes

Part-way thru the cut...

Grateful that I talked to experts, a few survivor friends, and read blogs and advice sites for people dealing with chemotherapy and side effects.
I've mentioned a few times that I've read about how patients who have longer hair are advised to get it cut short to help with the transition to losing hair/going bald...
Decided to do this before my first chemotherapy appointment. That appointment is this Saturday- 5 days away.
Sophie, at Tony and Guy in Central is one of the best hair stylists I've ever experienced. (And I'm really picky as a curly haired person.) Really appreciate how she handled today- I know that it wasn't just hard for me to get the hair cut... she's been invested in my hair- helping it grow, getting it to a style both of us agreed worked well for me, and now had to go thru cutting it. This was after last year when she flat out told me she'd never cut my hair short in a random conversation we were having...
So, I nervously asked Sophie a bit ago if she'd be willing to help me with this not-so-wonderful situation... Of course she said yes... She's one of those that is comforting and ridiculously talented simultaneously. I also asked my friend Amy if she'd come distract and take pictures... she's a wonderful friend that staged an intervention with another dear friend the first day I stepped foot in a community center here in Hong Kong and helped welcome me and sorted me out with doctors, hair stylists (introduced me to Sophie), and more... I appreciate her friendship tremendously. Amy came prepared with funny anecdotes, interesting things to chat about, and a talent for photographing the whole thing...
Now it is done.
Documented.
Moving on.
I think it is a lovely haircut. Not what I would have ever chosen in a different situation...
(damn cancer)
Sophie is on call for when I need to officially shave it off... as is Amy.

Husband was wonderful as always, he first said, "Well, you have your hair pulled back so often this wasn't too much different until you turn around. Almost forgot for a second." - he likes it...

Kiddo was a little tumultuous.... Yesterday I asked him to decide between a few short curly haired pictures... he chose this one:

A friend recommended that I ask him to help with the decision, appreciated the suggestion. I loved the show Felicity and was surprised by the haircut way back then on Keri Russell... which isn't appreciated by many out there but helped me look at short curly hair as a possibility.

When my sweet kiddo got home from school, we caught up and this was his reaction to the hair cut: First not really noticing, then noticing, then saying he liked it, then later saying it scared him, then tearing up and saying he never wanted me to lose my curls and long hair, then voicing concerns about me eventually going bald, then at the end of storytime together saying that he thought it was pretty and goofing around together. I knew it would be up and down and up and down for him. Love my little sensitive guy.

Somewhat of a mohawk style for a friend who suggested it... partway thru cut.
(Hardest part was actually seeing the top part of my hair cut short...)

Facebook friends are incredibly supportive... beautiful people that they are. Many told me the cut brought out my eyes, made my cheek bones more pronounced, and that I should get some fun dangly earrings. Many suggested I color my hair an outrageous color, funny idea but heck no... going to put enough poison in my body with this chemotherapy, no need to put it on my scalp as well. :)

So.
Got thru the day.
(It helped that earlier in the day I was able to go to school to see an absolutely fantastic author visit for my students with Candy Gourlay- LOVE HER BOOKS- Shine and Tall Story- and also had a long wonderful Skype visit with my best friend in Alaska....)
Positive moments keep getting me thru.

*Amy noticed that I was having a few "wow" moments right after the cut and that she expected that I'd have some to share on the blog, yup.... I do like my lists.
Here's a few things I randomly thought of since the cut:

1. I need other things to fidget with now that my hair isn't there to mess with...
2. It is fun to touch short hair.
3. When it rains, you can feel raindrops when they hit your head.
4. My hair will actually dry in less than an hour now vs. taking all day to dry.
5. I can feel every breeze now...
6. Missing the cushion of hair when leaning back, sigh.
7. Will take adjusting for how much hair product to use.
8. Washing my hair is super fast now.
9. Short hair is stinking easy... No need to think about how to style it. Just wash and whoop, you're done!
10. Curls will find their way. Right now every hair on my head is saying, "Oh My Goodness WHAT Happened? I'm FREE!" and they are having a little fun adjusting... curious to see how humidity here in Hong Kong will effect the hair...
I'll watch the changes over the next few weeks until things change with expected chemo side effects kicking in...

So ends my thoughts for today... Glad I have time to reflect. Thanks all for keeping up with me on this....