Alopecia Thoughts

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?

Alternative Medicine, Food Adaptations, and Post Surgery Update

A thoughtful friend recently wrote me and asked what types of alternative medicine I was open to... I filled her in on all my actions... she thought I was on the right path and exploring many options. I've always been a huge supporter of alternative medicine. 

When I was 18, I had to experience life using crutches at my university because of my knee being inflamed. I lived on the third floor of a dorm up a hill and over 50 stairs. I had recently decided to try being a vegetarian and was constantly eating baked potatoes and tomatoes. I couldn't figure out why my knee was constantly swollen, why I had to have the knee drained frequently over the course of that year, and I hated the anti-inflammatory pills my doctor prescribed because I knew I almost had an ulcer from them the year before... so I went alternative or what I prefer- preventative. I went to Bastyr University in Seattle and found a book that helped me. I dealt with allergy tests but what really helped overall was doing an elimination diet. It was enlightening to find out that my body didn't do well with nightshades. So I quit eating them. No more of my favorites- tomato, potato, peppers, eggplants... (Made sense why my knee was swollen all the time at the beginning of the year, I was basically poisoning myself!) I also eliminated for a long time alcohol, citrus, dairy, and red meat. These restrictions have kept my knee inflammation mostly at bay for years now. It was quite a relief to find a solution that actually worked.

So... I'm already used to food restrictions, it wasn't too hard to adapt to a new food protocol although my family found it pretty rough and a little annoying when it came to going to restaurants...

My big approach to life is to have a healthy whole body perspective and preventative care vs. having to react to things. Unfortunately, my body hasn't quite agreed with my philosophy even though I've tried to live a healthy life. You have to react when there's cancer cells invading your healthy body in different places!

I was chatting with another friend yesterday and she asked me about food. I told her how I wasn't even tempted to eat food that wasn't on my "list" and that I hadn't even eaten a cookie since I had one in June- it was one delicious chocolate chip gluten free cookie, heaven... *Besides a few little pieces of sugar free gum, I haven't had any candy since April, not even chocolate!

So thought I'd share my lifestyle/alternative practices:

I went to see a dietician and have adapted my food choices accordingly, although I'm not absolutely practicing the Kelley protocol because I lost so much weight that I had to find "give"... I added back in soba noodles, brown rice, quinoa, and edamame. I presently don't eat: meat- except for salmon, eggs, dairy, sugar, white rice, soy, processed foods, soda, alcohol, most grains, nightshades (still)... the list goes on. It is a little restrictive.

I have an osteopath- like a chiropractor, who I trust and appreciate. Expensive but worth every penny. I'll go to her post op/treatment. With bed rest, etc. feels pointless to go before.  Also massages are good. Booked one right before surgery. Will give it a couple of weeks before I return, want to feel a little more healed around all three incision areas first.

I take naturopathic supplements and vitamins. I've taken these for years for my arthritis but now have added in things like Tumeric...

Yoga is something I really appreciate but haven't found a place that I like yet here in Hong Kong. I've fallen behind in my normal routines but that is something I'm returning to, carefully.

I'm trying out essential oils as an alternative treatment. I did a little research and found some suggestions for lung cancer treatment and ordered what I thought our family could afford. Most of the essential oils have been purchased through Young Living.

Lavender, Frankincense, peppermint, orange, balsam fir, thyme, and R.C. from Young Living... 

R.C. has this in it: eucalyptus, myrtus communis leaf oil, origanum major leaf oil, pinus sylvestris, lavandula angustfolia oil, cupressus sempervirens oil, pica mariana leaf oil, mentha pipenta herb oil, citral, citronelial eugenol, geraniol, limonene, linalool... loads of stuff... 

Also getting these from US soon thru my friend: Ledum, Palo santo, Immunity (another mix)

I also recently began working on adding meditation into my life. I've continued to use the app Headspace- enjoying it. Downloaded a few others and have some videos to watch as well...

I Skype with a wonderful life coach. Next week I'll chat with her. Wonderful woman based in Oregon. She and I see each other via Skype once every two weeks. I appreciate her perspective and I also think it is really helpful for me to have someone who cares but is a little distanced from the situation I'm in... She's incredibly supportive and has given me reasonable goals that I can handle tackling. Also, she has some enlightening thoughts on my diet as well. My first goal was to reflect on where there might be inbalance in my life. We agreed HEALTH was ridiculously off and also finding joy was a priority... along with balancing my social scene... as a friend mentioned to me once, I love friendships and social situations. I love being counted on and also appreciate when there is reciprocal friendship experiences...
Also, through her suggestion, I'm consistently writing in the morning and evening in a journal. I treat it as a reflective journal at night and then in the morning I write about 10 things I'm grateful for in addition to life reflections. Sometimes it is as simple as being grateful that I've woken up and other times I write about foods I'm grateful provided me with good nutrition, special visits with family or friends, etc... I began this journal consistently writing one full day before I received the lung cancer diagnosis. Reading through the journal now is quite eye opening as to how positive and strong I can still be even in this frustrating time.

Reflection on life 2.5 days home from the hospital, 1 week post-surgery:

I'm fighting for my life, staying on an even keel with some wonderful friends and family checking in to make sure I'm getting positive boosts, and waiting to find out the protocol for treating the cancer in my lymph nodes. I can feel pain where the doctor removed the other lymph nodes to be honest. It is odd. Meditation throws me off a little when they ask you to do a body scan. I always think, yep, I feel those stitches- it is really frustrating that two of the three incisions were actually made through my right breast that had already been through enough with a lumpectomy in March and radiation in May- poor thing is overreacting and painful! Yes, I feel that chest pain, and yes, I feel a flutter against my ribs when I take a deep breath where my right lung bottom lobe was removed. 

I cough more which is a little disconcerting. I can't always sustain a conversation as I'm used to. It is good that I'm on bed rest since I don't think I could handle teaching all day at this point in recovery. I am purposefully taking walks every day since I got home from the hospital. I learned about the word "shattered" a while ago from a friend and I was thoroughly shattered today after I walked through Victoria Park and over to another area of Hong Kong to visit a few health food stores, O Farm and Green Dot Dot, they were cool to browse with many organic options. But getting home was quite an exhausting experience not only from being tired already but because it was hot and I was sweating! I think listening to an audiobook helped me concentrate and get along in the walk but man, I came home and rested for a long while. Shall take it a little easy tomorrow and then head to my oncologist to find out if he will share anything with us yet for future treatment plans. He's evaded questions completely with a kind smile and a "let's get results and heal from this surgery a little first" answer.

Good things?
I watched many good shows while I was in the hospital. I couldn't concentrate too well on reading as I had roommates that were a little noisy most of the time during when I would have read. Good excuse to watch shows!
I read many books since I got home. On my first full day at home, yesterday, I went over to Central and introduced myself to someone in CancerLink, the Cancer support center. I'm still waiting to hear from the English contact who hopefully will connect me with a support group to meet with. I was excited to find out CancerLink had a library I could borrow books from! I told the counselor who walked me across the room to it that I was a librarian and he nodded and smiled. Sigh to translations and tried conversations but I found two helpful books that I came home and read from cover to cover that day. They were The Chemotherapy and Radiation Therapy Survival Guide - Information, Suggestions, and Support to Help You Get Through Treatment by Judith McKay R.N. O.C.N and Nancee Hirano R.N. M.S. A.O.C.N. - wow was this book enlightening and helpful. I appreciated especially the meditation, stress reduction, visualization, and relaxation sections in addition to looking carefully over the nutrition chapters. Also, understanding a little more about radiation and chemotherapy was quite helpful.
I also borrowed Living with Lung Cancer- A Guide for Patients and Their Families by Barbara G. Cox, M.A.; David T. Carr, M/D/, Robert E. Lee, M.D. - this book was pretty interesting but after the reading the other book there were less things for me to extract. But useful to read nonetheless.
I read many other children's literature/YA books as well.
I listened to a few audiobooks, some dark but most light.
I had time to connect online with people.
I enjoyed family time.
My son played catch up for a few days showing me things I missed and chatting about school.
I was able to read aloud and complete a book with my son that we'd been reading together since June.
I connected with a few friends by phone and text.
Planning a few visits with friends in the coming days is also wonderful...
It honestly is a little lonely to be on bed rest. So, I'm thoroughly grateful to friends who have reached out online and in person.

Survivor Book Inspiration

My Life.... what do I celebrate with?
reading books...
Diagnosis? 2 cancers within 7 months? = wake up call.
What did I do next? (after family, friends, and medical plans?)
Read. (I was on bedrest for four weeks, didn't want to just watch the screen.)
Radical Remission: Surviving Cancer Against All Odds - Kelly A. Turner, Ph. D. - inspiring, packed with fascinating research.

You Need Humour with a Tumour - Reflections on a journey with cancer - Annmarie James Thomas, Flye/Jeremy. - this book broke my heart.

Kicking Cancer in the Kitchen: The Girlfriends Cookbook and Guide to using Real Food to Fight Cancer by Annette Ramke and Kendall Scott - some delicious recipes, inspired stories as well.

The After Cancer Diet - How to life healthier than ever before by Suzanne Boothby - opened my eyes... activated my food/life changes...

Cancer Vixen: A True Story by Marisa Acocella Marchetto - absolutely loved this graphic novel about dealing with breast cancer/treatment.

Crazy Sexy Cancer Tips by Kris Carr - working my way through this book now. Love the clips I've watched from The Oprah Show from Kris Carr, quite the inspiring survivor.

The Silver Lining: A Supportive and Insightful Guide to Breast Cancer by Hollye Jacobs RN MS MSW, Elizabeth Messina - Inspiring blog, such a positive person...

Reading soothes my soul.
I've quietly read these books when I'm a very public reader. Some weeks of the past year were very low on books read in my kidlit world because I was more focused on cancer recovery books...
I've changed my diet, lost a ridiculous amount of weight which worried me, and tried to deal with all the complications of operations and radiation by reading how others dealt... reassuring to not feel alone. Inspired other times by survival stories...