I love my dog.... last picture of me BEFORE my hair all fell out.
Allowing my emotions to flow thru these ups and very downs kind of sucks sometimes.
After clumps of hair coming out this morning, I acknowledged that I'm past the thinning stage and going back to the bald stage. Unfair. Sucks. Must I really live through this again? I loved the curls that were finally growing out! Sigh. I know there are many worse things but I do not find the silver lining of having to go bald again after 6 months of bald already and 3 months of seeing hair. Not cool. Like I'm getting teased in a bullying way... but I chose this. Chatted with the kiddo about it and told him I'm willing to deal with hair loss and chemo side effects if in the end I can be with him much longer...
Many of my students asked me if I was ok today. One said I looked sad. Not too many asked 'why' today, but I was ready.
My good friend told me what her friend used as an answer to students: "I took some medicine that makes me lose my hair but it will grow back out."
I've had a few times today when I'm just feeling miserable. Many people kindly avoided pointing out the freaking hat and just led on with normal life, having interesting conversations and being good distractions. I appreciate work distractions so much. I'm certainly aware and recognizing my emotions, but I really don't need to be fixated on them 24x7. It is much better to be working than to be staying at home on my own trying to be healthy and balanced... So much more is accomplished and I just love being around my colleagues and students.
Appreciated snuggling and silent side by side reading with my kiddo. Love when he's lost in a good book.
Loved snuggling and talking life things out with my husband, grateful for our time together...
Also snuggled with my dog for a long long time, to the point where she looked at me with those "mommy, I really want to sleep now" eyes... So, to bed I go.
Got thru this day.
And so wearing hats begins again... At least they have style!
Another day has passed. I was tired and found that old pains that hadn't tortured me in a few weeks had returned. Thoroughly annoying. Did lots of deep breathing and stretching. Think they helped.
Many days ahead.
Will plug my way through each one gently and carefully. Thanks for journeying with me...
Enjoyed the weekend, dealt with pain, coughing, and such but really appreciated time with family plus downtime. Coughing is easing up a teeny tiny bit...
Getting thru the days. Enjoyed getting back to yoga classes on Saturday. Missed for weeks. Will miss next Saturday but that's just one time...
Noticing hair coming out. Run my fingers thru the hair and get 3-5 hairs. My husband said "So don't do that!" But it is honestly itchy until I do do that... One went PING onto my food plate last night. Sigh. I'm NOT going to shave it off though.
Presently, hair falling out is nowhere near like when my amazing hair stylist thinned my thick hair around a year ago. Annoyed to deal with hair loss again. I've been dreading this for way too long. Good to just have it happening already.
Took a good walk with a good friend this afternoon. Helpful to talk out things for a while. Helped me realize that I'm getting concerned about too many things. I addressed many worries tonight, made some decisions about insurance situations that were weighing on me and more... Feeling calmer.
There are many, many unknowns right now, but when is there a time when there aren't? Focusing on having faith that things will work out they way they were meant to. Also focusing on a clean bill of health, no self sabotage. Sure, I'm addressing my frustrations, acknowledging when I feel despair but also trying to turn those thoughts to positives...
Next Saturday I'll get thru chemo. Last time. Getting there.
Mutts Comics plus Kris Carr = brilliance. Loved.
Went out yesterday and did a little swing dancing with my love. So wonderful to be dancing, to be spun around, to work as partners in that way. I just love dancing with my husband. I also simply love dancing. I've made it a goal that I'll be able to have the stamina to do zumba again. With qigong and yoga helping me get stronger, it is possible.
Thanks for journeying with me...
Off to dance.
If only I could get this comfortable and sleep as soundly as our sweet Dulcie dog. She's doing a little better...
Thanks Megan for joining in on our Bali adventure! So grateful...
Knew it was coming. Doesn't soften the blow though mentally I guess. I'm not worried about these last two rounds of chemo. I know what to expect, what is coming, etc. I'm just not looking forward to the experience for these last two times. It feels like I'm signed up for two more rounds of poisonous torture that must occur. I probably have one more week before the first round of chemo goes in. Looking into local hospital information still and also I need to talk with my administration before I can have an official appointment.
I know I'm going to lose my hair again. Not going to shave it off this time though. Will just deal. I'm not thrilled by this and am honestly quite concerned about what to do since I'll be working full-time during the last two rounds but shall play it by ear. My principal has given me permission to wear "hats" to work, probably will go with that. I'll transition from headbands that I'll wear for the next few weeks to hats. Don't want to go back to wearing a wig.
Learned about something interesting on a blog I follow today about a castor oil combo you can use to help your hair grow, support your skin/scalp's health. Shall look into it further when necessary. http://wellnessmama.com/35706/castor-oil-hair/
Have had chats with my husband and son today about the information my oncologist shared earlier.
My oncologist said that it would be best if I continued with the same chemo combination for the last two rounds/doses... My kiddo was not thrilled to know that I'd have more chemo. I think he was watching my hair grow out and told himself that I was getting better. We talked for quite a while about how the medication would have the side effects we don't like/enjoy but that the hope is to get rid of cancer cells and have me around for a long time. He's accepted it and knows the door is open for more conversations. Never fun when tears come to my kiddo's eyes. My husband is stoic and there with me every step of the way. He also just got through another scuba certification course! So proud of him...
We had a fantastic family trip to Bali, not everything went as planned, but we enjoyed time together, time with our friend Megan, and many adventures. I'll share those on my Styling Librarian blog. Often it was way too hot for me but that wasn't too big of a surprise since I prefer happy-medium weather. I'm starting to think about moving back to Oregon more now. Mentally packing, picking what I will/won't need, and thinking about what we can ship ahead of time. When we move, we're not bringing back any furniture or anything like that, just 2-3 large suitcases each when we fly. I think the largest thing we'll have is our Dulcie dog's carrier. Will see about that. It was wonderful to see her after two weeks away, she's such a sweet good dog.
Shall see what happens in the next few months... grateful for my increased strength and appreciating the days my brain is sharp... will be especially patient with myself the next month and a half. Surprising how fast time has flown this year already. I look forward to the last 11 weeks of work. Feel lucky to be supported at work, with friends, and home as well...
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...
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.
I've been quietly learning more these past few days.
Learned about green smoothies and mindfulness from a few books I'm reading.
Learning more about Qigong and really appreciating the practice. Something I'm trying to do daily versus just once a week during the class session.
I attended a workshop today about the Yuen method today, thought it was fascinating, shall be contemplating the practice over the next week. Seems like something I can do naturally- when having a negative thought, redirect to positive, spin it, connect with energy and let go of past issues that might be holding back growth and healing. There's much more to it than that... Here's a website that explains a little bit: http://www.yuen-hk.com/
I've also been watching a video series called "The Truth about Cancer"- every day another hour is released and has some interesting research and information shared. After each day's showing, the videos are pulled off and the next video is available, so I'm learning while available. The big things I've already understood but appreciated hearing again- immune system is what must be supported, drinking green tea and eating raspberries/blueberries are good for fighting cancer, sugar is pretty much poison to cancer patients... it feeds the cancer cells, so starve them.... I find it fascinating that at my oncologist's office there's candy out ready for patients, yikes. But I'm not of the mindset that natural fruit is a bad thing or that fresh vegetable/fruit juice combination could be bad... Focus on the liver and gut are the first things to resolve. This is what my nutritionist told me I needed to do months ago. I've been trying... Chemotherapy doesn't help things for sure with my immune system but I'm going to believe that what I'm doing is going to help, the combination of modern medicine and all the alternative supplements, dietary, mental, physical approaches I'm trying will help me survive and thrive... http://thetruthaboutcancer.com/live/episode2.php I appreciated that there were time-stamps for listening to specific people vs the whole hour- although I certainly watched the whole thing...
1 minute 58 seconds - Dr. Rashid Buttar 19 minutes 39 seconds - Bob Wright 36 minutes 15 seconds - Bob Wright again
Still drawing/coloring each day, really is cathartic to be honest, so happy I'm back to making this a habit. Also enjoying the gratitude journaling. I also love poetry, I receive a couple doses of poetry every day in my email inbox, this one today caught my attention... (I also received some poems from beautiful friends lately, appreciated them as well...) Poem of the Day from the Poetry Foundation- Chemo Side Effects- Memory
Was a little more focused on quiet time and walking out an about than on writing these past few days. Enjoyed visiting a new bookstore with my husband. Trying out hats and scarves lately, haven't worn my wig for a week, but honestly, I want to get my scalp issues cleared up first...
My scalp is still driving me bananas and I do not believe that my oncologist knows what to prescribe for it... have tried his method for 4 days, will probably switch back to natural methods after I see him tomorrow. Tried to be respectful for a while but having a teen acne breakout on your scalp kinda sucks big time.
I'm back to chemo tomorrow and then my wonderful friend arrives the next day, so excited to see her and have quality time together. My husband and son are ready for their China adventure, they have their visas and they're reading to go, oh boy for them! I'm looking forward to the pictures and stories they'll have. Here's hoping some of the Mandarin my kiddo is learning at school might help them while on adventures.
So, I'm grateful for life... every day. I don't struggle when I write in my gratitude journal... I can even dig deeper than the grateful for family, happy healthy child, good marriage, etc. most days...
I don't quite get what completely picks me up some days and then brings me down other days... seriously, it shouldn't be hard to distinguish but suddenly I'm feeling positive after a slump. Or suddenly I'm feeling like slime for a while. I try not to fixate on things... just sorting thru emotions. Moving on.
Came across this article that made me appreciate having the chance to speak up and communicate how you're feeling, good reflection. http://www.washingtonpost.com/news/parenting/wp/2014/07/22/im-a-mom-with-cancer-now-what/
Then I read an article on how scientists discovered that cancer grows faster when you sleep... sweet googly moogly... not pleased with that but they look at it as an opportunity to think about when chemotherapy drugs are administrated, etc. Hmm. Anything to help future patients: http://www.forbes.com/sites/jonfortenbury/2014/10/06/tumors-may-grow-faster-while-we-sleep/
I think some days I deal with a little jealousy. For example, chatting with friends about the future... that is hard sometimes. Simple future plans like travel is mostly fun to chat and think about and living here in Hong Kong there are so many incredible opportunities for people to enjoy exploring. My husband is quite the planner. I'm a little sad to miss our well planned trip to China to visit the Great Wall, Xi'an, Shanghai, and more... I read aloud a few novels to my son that introduced him to things I wanted him to anticipate. He's really excited. So the boys are going without me. That's ok. My best friend is coming to spend time together while they're gone. I'm thrilled to anticipate her visit and it will certainly lessen the 'blow' of missing family vacation time since she and I will adventure depending on my energy levels. We also have two other family trips preplanned and paid for. Hope I don't miss them. My oncologist won't give us a definitive answer about the December trip but flat out said 'everyone needs a holiday'... so shall see. We also have tickets to visit home over spring break. I am having a hard time thinking further into the future. Summer plans? Let's see how this chemotherapy treatment goes. I have hope and I'll cling to it, but reality also looms.
Chatted about retirement with a friend the other day. Where do you want to end up, etc. I certainly had imagined retirement in the past. But now, not to be morbid or anything, I'm just unsure about the future and am focused on survival, day by day.
Heading out for the day yesterday...
Had a great time visiting with lovely coworkers yesterday, had a late birthday tea and loved chatting with them all. Also tried out my new wig in a social setting- they were all extremely supportive. I'm still a little unsure about wearing it and honestly enjoy being bald at the moment with the scalp annoyances I'm having (using tea tree oil, seems to be helping)... I think I prefer wearing a scarf and honestly don't give a hoot at the looks people give me. As an expat, I'm quite used to being looked over anyways or simply ignored most of the time. So walking around with a scarf and a face mask isn't that odd. I can appreciate not standing out.
Enjoyed using one of my prepaid massages yesterday. You buy discounted packages at some places, works for me... It was the first time I'd seen my massage therapist since before I had the operation. So, she was a little shocked and asked a few questions but also was gentle and firm as needed. So grateful.
Last night I was surprised to have energy but took advantage of it and headed to a CancerLink workshop on stretching exercises, appreciated it overall, nice to be around people who know what I'm dealing with (mostly) and are so kind. I've committed to a few other workshops, too bad they're always way far out in Kowloon- energy plays a factor in whether I show up then. As it was I was late last night but enjoyed. I came across a good healthy recovery video for breast cancer patients recovering from surgery. http://breastcancerrehabilitation.com/watchthevideo.html Think I'll try to watch/look into it later more... will try exercises from the instructor yesterday a little bit in the next week.
Went to my acupunturist today and told him flat out that I couldn't drink that Chinese herbal medicine more than twice a day (I consider it a feat to get thru two of them) and he was mellow, gave me more, and told me he was happy I gained weight. He also lectured me about eating eggs, adding them into my food plan. Explained about how in Chinese practice eggs represent life and they should be eaten twice a day. Shall see. I had a salmon quiche yesterday at the tea and it was delicious that was one of my first egg-back-in-diet additions. I'll try to get at least one egg in me each day. Still a little freaked out about the estrogen factor of it though. I'm also still eating chicken and added in oatmeal. Shall see about that rice water... Stomach has lessened its issues at the moment. Sleeping isn't perfect but is a heck of a lot better than past weeks.
Finding that I'm avoiding some projects/responsibilities for a while and then when I finally address them it feels like such a successful thing... I miss being the one to tackle and instantly take care of stuff left and right but am realizing that this approach to life can be acceptable as well.
Thank you to all who donated to the fundraising campaign, so grateful, overwhelmed, appreciative. It was perfect timing as I just received the first of many "shortfall" bills yesterday from my insurance. No fun but approachable.
Enjoying art, excited about my friend (and sister soon after) visits, and appreciating little things...
Thank you so much for keeping up with me... grateful...
Taking breaks actually creating a little art has been nurturing. Glad I'm trying #Inktober where you create art with ink, doesn't have to be something complicated, each day in October. I like daily challenges like this, gives me a little focus and let's face it folks, I like focus... if you hadn't noticed that about me already.
So grateful for Give Forward fundraiser, relief is palpable. Thank you x 1000 to my friend Erika for pushing me to be open to gifts and to all who have gifted with words, support, and financially. Overwhelmed but appreciative....
Chemo effects from 3rd session of 12. I'm not sure how I feel about things at the moment. A little different than last two session reactions which I'll accept, it was a two medicine session so each week will be a little different. I was surprised to have not so much nausea. Instead I'm dealing with upset stomach, scalp freaking out, three crazy itchy mosquito bites from 4 days ago- they're easing up a little bit thank goodness for calamine lotion I'd forgotten I bought- normally I get welts with every mosquito bite but with my healing being inhibited by drugs the biggest welt actually got a blister... crazy, and a dry bloody nose - not bleeding- learned that I should... not blow my nose! Fabulous....
Honestly I'm also dealing with a little anger. My best friend was relieved that when we Skyped I wasn't as positive and happy as usual. I won't go into what made me angry but it is justified and I'm figuring out how to manage addressing the conflict so that it won't hang over my head. Not worth my worry a few years from now, so just trying to address and deal. As many who know me well I do have a few control issues and have worked to learn how to let go a little... sometimes that backfires.
Chatted with my wonderful life coach and got the BEST advice from her, besides figuring out how to get my bottom into the chemotherapy chair every week, how to calm myself at night... this is something I already have done in the past but I just hadn't done it in the evening! Are you ready for what gave me a good night's sleep for the first time in almost two months? Drumroll... Legs up the wall. Yep. Place a yoga mat on the floor next to the wall, put your legs up the wall with your bottom against the wall... hooray. Deep breathing, meditation, and a little quiet thinking helped me relax. 20 minutes later I quietly climbed into bed and actually fell asleep. Amazing. Much better to try this vs. resorting to sleep medication! Learned that if you have high blood pressure you can't do this though, careful my friends...
Enjoying qi gong still... appreciating the energy focus, health focus, and friends who attend...
One friend told me tonight that I should investigate answers to some of my health issues online... so grateful for the reminder. Found that my scalp issues occur with so many people who are dealing with chemo. I know I'm not the only one but wow to the resources once you start looking. After sorting thru many, I appreciated the tips for scalp issues here: http://cincovidas.com/chemo-side-effect-red-painful-welts-on-my-scalp%E2%80%94what-can-i-do/
But of course will check in with my oncologist on Saturday about new not-so-fun symptoms as well... Also trying out drinking brown rice water to help my stomach calm down a little. Shall see how that goes now that I'm going to drink it three times a day. I do so love drinking horchatas but this certainly wasn't. No added sugar and a little cinnamon does not a horchata make... but shall accept shortcomings if I can feel a little better.
Here are a few of my little #Inktober sketches, makes me happy to pick up a sketch pad again. Funny that I was never far from one all through my life until I was around 22... found a similar sketch pad to one I used to scribble in all the time, nice to have a different outlet for expressing thoughts. Just having fun with pen/markers... haven't felt like drawing on my iPad, etc... a drawing pad is enough for me!
I love my dog... watching her peacefully sleep is a new way for me to pass the time, always so grateful for her companionship...
I used to have a hedgehog... still slightly obsessed about them but I'll NEVER own one again. They are disgusting creatures... *I loved my little one and treated him very well... but NEVER again. There's a kid's story there, I'm working on sorting it out in my mind presently...
A special friend requested that I try out drawing a horse in honor of her birthday... used to draw unicorns all the time as a kid, I was one of those unicorn daydreamers, but this was... ok.
I love "Dot Day" each year and a friend asked me if I'd created my dot for this year yet... no I hadn't... grateful she suggested it, was fun to think about what represented me presently but also it was odd because the picture reminded me of my school's logo...
A good friend and I shared a birthday, she brought me flowers when we spent our birthday afternoon together... loved them, good challenge to get on paper.
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.
So.
Hair is starting to fall out more than I've noticed before. A friend warned me I was anticipating too quickly and that might be another week or so... but that perhaps I'd enjoy no shaving of legs, underarms, etc. as more hair falls out. In fact she pointed out how I'll soon realize how easy men have it when it comes to showers, etc... Ok, another silver lining to look for... Honestly, seeing my hair fall out is a sign that the chemo is working and my body isn't fighting it off... hopefully it is working to kill off the cancer. I'm probably going to get my hair shaved off soon. Annoying and slightly disturbing to have hair falling out rapidly.
Some have asked over the past month about our finances. This is a tough topic- quite awkward and uncomfortable for me personally. I have a few good friends who convinced me to be a little comfortable with asking... so this is for those who were wondering: Give Forward Fundraiser for Debbie *not necessary to participate, only for those who were thinking I needed to simply ask, wanted to do something for my family, etc...
Watched the show Red Band Society today. What bothered me? One boy getting chemo had these THICK eyebrows but now hair on his head... hmm. The patients all look so HEALTHY. They have such lovely rooms in the hospital... Hmm. But as my husband said, "Well Debbie, that apartment on Friends wasn't exactly realistic now was it?" Hmm. True. I did enjoy the simple storyline even though cancer sucks any way it is presented. Nice to see a few favorite actors and actresses in the show!
On to other stuff.
Eyebrows- so you lose them. I came across a video today that made me think, goodness I need to find transparency paper asap!! Not sure if I can with no school access but here's a generous blogger who has quite a strong opinion on cancer/life and her passions, inspiring...
So.
Hair.
Yes, a few friends thought I might escape the loss but I honestly can handle it either way. I know it will be hard. Even more so to lose my hair than cutting it short, going to thru surgeries, going thru radiation x 2, oh well. Part of life... what I'm concerned about is other reactions. Namely my son's... Others, they can get over it, get used to it. I'm human. I'm fighting a huge flaw right now and ready to survive as well as I can... but my kiddo... different matter. He made a beautiful birthday card for me and whispered when I received it, "Mommy, I put a secret message at the back for you." "Ok love"... Turn it over and he has written "I don't know what I would do without you." Sob. Choke. Sob. Hugs and thank yous for the pictures, refocus on the fun ideas he had to share and secret smiley faces he hid throughout the card for me... but seriously, did he read that somewhere? That's what my husband thinks. Seriously... *Had a wonderful birthday which included family time, Skyping time with my wonderful parents, more family time, fun shopping time with a fellow birthday friend, new restaurant date night at Jamie Oliver's new restaurant nearby our apartment, home time with dog for a little bit and then viewing of the movie The Maze Runner. Not sure how I feel about that movie. Made me feel bad that I only read the first book... really enjoyed it but... will contemplate it for a while. In the midst of the day I also had a surprise chocolate cake delivery that had been carefully made by a beautiful friend who knew about all my food limits and was determined I'd have birthday cake... thank you for that surprise!! Delicious and good calories too! ;)
A few years ago I became obsessed about finding books for my library collection on loss, on cancer, and more... and then I ordered some brilliant picture books... and then read aloud a few to my son without completely remembering which one was which. I scarred him a little when I read aloud a few and I remember his look of reproach when I finished one and he said "Mommy, why in the world would you read this to me?" Couldn't just say "Empathy my darling..." but instead snuggled, talked about what upset him and moved on.
I had a few students really affected by cancer in the past, losing a loved one, classmate, and more. Heartwrenching for the community. I always received feedback from parents and special requests when they wanted the books about loss, cancer, and more. I was relieved to be able to accommodate requests. I've seen some brave authors in the past years write brilliant novels and picture books. But the one that stuck with me for years now was a book that inspired many of my students to grow their hair long and donate it to Locks of Love. I did it once myself...
So... books. That's what I LOVE talking about and I've barely mentioned them here... of course my Styling Librarian blog is where I pour out my soul on my love of books but.... here's thoughts about books...
Alopecia- why am I mentioning it? Because I noticed over and over this coming up as an "effect" of chemotherapy and before this I only equated it to the permanent situation some people live with... so...
The book that really stuck with me is a book by the brilliant author Margaret Peterson Haddix- I just love her books. Got to meet her around 10 years ago in a special visit and it was incredible, one of my author heroes. So... she wrote a book a while ago called Because of Anya. It is one of my favorite books to share. I would connect it to a number of other books that have touched me almost as deeply as Wonder by R.J. Palacio and it is about a girl who has alopecia- but more than that it is a gorgeous story wrapped up in empathy and caring for others.
Now. cancer books. You can find loads with a simple search in Goodreads - Cancer picture books - What have I appreciated in the past?
Nowhere Hair by Sue Glader - simple and lighthearted... but explains about chemotherapy in an appropriate way for children.
The Lemonade Club by Patricia Polacco - touching and beautiful book... as is any book by one of my favorite authors... quite recommended...
Death books- tough topic... there are so many more books beyond The Fall of Freddy the Leaf which was all there was besides one other touching book about death when I arrived at my old school 16 years ago... so here's what I appreciated:
The Scar by Charlotte Moundlic - this one made both my son and I weep. It is beautiful thoughts on loss but not blatant... Missing Mommy by Rebecca Cobb - touching on loss but uplifting... Saying Goodbye to Lulu by Corinne Demas - about the loss of a dog but can actually transition to other losses appropriately and sometimes the way a child would connect to the topic in the first place.
Good for bringing up loss:
The Heart and the Bottle by Oliver Jeffers - some people say "weird, I don't get it" when they read this book but I read it and thought, here's an introduction to dealing with grief and loss...
I know there are many, many other books about cancer for children, chemotherapy, and more. These are just the ones I'd recommend for others and also ones I wouldn't hesitate picking up to share when it is the right time... Anyone have one they'd recommend?
Well.
Got thru another day.
No fun to go thru this.
Was grateful for the anti-nausea medicine being pumped in after the benadryl.
Only 1 of 3 meds today.
My life coach suggested I dig deep to find things that will bring me to the clinic every week. My things for this week were: audiobook of Mary Poppins- laughing, time with husband and son afterwards- anticipation, chatting with friends and ride home with friend- support, and expectation that things will hit Monday and Tuesday - hope for an ok weekend. I got there.
My friend told me that this might be an easier week since it was only 1 med but the cumulative effects will slowly make my 'bad' days worse - Monday/Tuesday. So I'll take that anti-nausea medicine quick and early and take it easy as I should.
It was only 4 hours at my oncologist's office vs 7, that was not pleasant at all but ok.
This is the week that hair might start coming out. Oh boy. At least I have many scarves, hats, and such to entertain me once I get it shaved off.
I know it is odd but I'm filling my days. I really miss work. Really miss students. Really miss connections to my colleagues. It isn't fun. I'm enjoying reading when my concentration is there. Enjoying watching shows which I don't have to work too hard at.
I'm turning 41 this Thursday. Oh boy. Turning 40 wasn't great since I had my radical hysterectomy on that day... 41? Chemo treatment effects. Grateful to be here. Grateful to have this chance to celebrate life and be with family and friends but boy, wouldn't mind that future 42 birthday being just a little easier. For me, for my family, and my friends...
A friend who is struggling for a terribly different reason posted on Facebook today something that resonated with me:
I'm not down emotionally right now, actually feeling pretty positive on the day of treatment. Got to go out with my husband and son, try out a new restaurant, wander thru a few shops, pick up craft supplies at the Hong Kong version of a dollar store, and relax with a few shows with my husband tonight. Almost felt like a typical relaxing Saturday afternoon to be honest. I enjoyed every moment, even when my son and I argued over silly things and I had to apologize to my husband about being a grouch this morning when he didn't read my mind. Yes. I was angry and snappy that he didn't read my mind. I'm not a morning person in the first place. Add heading off to chemotherapy and I'm not a fun person to be around, even when I'm trying my best. Poor guy was just in his own world and not worried about me, which he shouldn't have to be 24x7. But talking it out this evening for a few minutes cleared the air, gotta talk things out!!
I went thru a few 'damn it' moments this past week. One was during pre-chemo treatment today when I found out I lost 2 more pounds. Seriously. I'm really eating a LOT and packing it in. Even ate a mini-carton of Happy Cow Coconut Vanilla ice cream tonight... But I'm still losing weight. Damn cancer. My oncologist isn't happy but told me it is normal to lose weight and to "eat". Seriously. I'm freaking eating. Even added in chicken this week which was weird to have back in my diet- treated it as an appetizer as I planned... and I added in bone soup thanks to a friend's generous sharing... My acupuncturist told me to try to drink a cup of it every day. Will try!
The other 'damn it' moment was dealing with the public hospital system for the first time. Good thing- I know what to expect now. Bad thing- I know what to expect now. Blech. I already dislike waiting, and I do have to wait a lot lately. But waiting in an uncomfortable chair, wearing a face mask, seeing 30 other cancer patients, and waiting for 2 hours and 45 minutes wasn't a thrill. The oncologist I met was knowledgeable and plenty experienced and told me that I'm a pretty special case. Yes, special, that's me, I go above and beyond. He said that he wanted me to continue to do chemotherapy through my private doctor so that we didn't interrupt the protocols already set in motion. (Ok) Then he scheduled a follow up appointment in November - scheduled for 10am but he told me to bring my lunch and expect to see him around 2-3pm, seriously!!- to see how I'm doing and whether I qualify for getting radiation through the public system. Basically, he's worried about radiation so close to where I already had it for my breast cancer treatment- me too! But as my wonderful husband said to the doctor when he said this, "Whatever it takes."
Living with Metastatic Breast Cancer - I know I don't have this but it is one of the closest things I can find to what I'm going thru since I'm such a "special" case... Appreciated this video:
And now... moving on. Day by day my friends. THANK YOU for all the support. Grateful. Grateful. Grateful...
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