Skin and Hair Researching Tips Plus Chemo Details

Thank you to those who shared humor videos and websites with me...
I've been collecting suggestions on this blog page:
http://lifesjourneyinterrupted.blogspot.hk/p/blog-page.html
I also decided it would be good to collect my healthy practice videos as well on a page, here it is:
http://lifesjourneyinterrupted.blogspot.hk/p/healthy-practice-videos-to-visit.html

Hair:
So, one tip I read recently (and was also told by a helpful friend) was to cut my hair short so that when I do have hair loss, it won't be as much of a shock.
I have permission to pop into my school on Monday when there's an author visit. I'm excited to see coworkers and the author... and of course students... for a few minutes.
After the visit, in the afternoon, I'm going to see my favorite hairstylist who will do her best to give me a good short haircut. Haven't had it short/pixie like pretty much since I was 12. At that time, that style was a disaster for me. I love having long hair... So, my friend will come along and distract/support as well...

Sweet boy:
Had the chat with my kiddo tonight. Broke the news that chemotherapy was going to start next Saturday. He just pointed at his head and said, "that's the one where you might lose your hair, right?"
I explained that I would likely lose my hair, yes. Saw tears starting to pop out of his eyes and we quickly explained about getting a shorter haircut on Monday and how I'll still be me, just less hair... He calmed down and joked with us about being bald and we shifted to a conversation about scars which was quite entertaining... Ended with us talking about how I fell for my husband at a swing dance lesson and how he caught my eye by reading a book during the dance break times. My husband thinks that scars are attractive and draw women in with the curiosity factor... I told the kiddo that it wasn't necessary to get scars to be attractive. Amusing to shift to that topic, I was grateful... I know this is just the beginning and that he's going to have many ups and downs as he watches my reactions to treatment. He's been the cheering section so far with my lung recovery/breathing practice.

Chemotherapy Details:
I read up on side effects of the chemo drugs that will be pushed into my body. Many listed skin changes, lip and mouth ulcers, and many other drastic side effects. So... to the internet I go to find out more.
I know some people might actually want to know the combo of drugs that will be pumped into my body so... Here they are:
I will have chemo for 12 total weeks as long as things are going ok.
It will occur in 4 week rounds, so 3 rounds total.

Anzatax (taxal) will be every week for 4 weeks:
http://www.hospira.com.au/english/_docs/Anzatax/Paclitaxel%20(Anzatax)%20cmi.pdf

Carboplatin - once only every 4 weeks:
http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx#.VBFyEWQsIcs

Avastin - the antiangiogenic- once the first and third week:

http://www.avastin.com/patient/treatment/possible-side-effects?close-all=true

Skin changes and more, investigated:
I found out a few things...
First off, there is a site called Look Good Feel Better, interesting:
http://lookgoodfeelbetter.org/
Appreciate their videos and tips for makeup- losing eyebrows isn't as worrisome:
http://lookgoodfeelbetter.org/beauty-guide/makeup-step-by-step

There are many good tips for chemo treatments...
25 tips here: http://cancer.ucsd.edu/coping/resources-education/Pages/patient-tips.aspx

Skin tips: http://news.cancerconnect.com/skin-care-tips-for-cancer-patients/

Some interesting skincare tips...
http://thechalkboardmag.com/12-skincare-tips-for-cancer-patients-and-survivors
http://www.bodyandsoul.com.au/beauty/body/skincare+for+cancer+patients,24441
http://www.webmd.com/ovarian-cancer/features/appearance-during-chemo

Concerned about mouth sores...
http://chemocare.com/chemotherapy/side-effects/mouth-sores-due-to-chemotherapy.aspx#.VBJu92QsIcs

More ideas for lip treatment:
http://www.medscape.com/viewarticle/709336

Video on effects of chemotherapy on skin:
http://www.mskcc.org/videos/effects-radiation-therapy-skin

So, yup, learning a little bit more...
Enjoying the days....
Getting thru.

Sweet dog monitored me today:

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.

Random thoughts about activity in recovery

So Debbie, what do you do after part of your lung has been cut out, your cancerous lymph nodes were mostly removed, and you're stuck in recovery at the hospital?
Well.
Honestly?
Visit with friends.
In person.
Online.
Through Skype.
Visit with family online and thru Skype.
Call people randomly and surprise them, take advantage of my time.
Read books.
Glance thru magazines.
Walk many many laps around this mini-circular floor- got done with 10 laps today, up from 4 yesterday.
Talk to my surgeon, oncologist, nurses, and physical therapist.
Practice inhaling and meditating.
Start feeling the stitches in my side beyond just the annoying drain.
Learn that the surgeon cut off pain medication without warning this evening... and discover that I really need that pain medication. (It is honestly simply extra strength tylenol. It kept the pain at bay pretty well though.) *And speak up for myself after getting a little upset that the pain was increasing-- not my fault that I hurt from stitches, a tube sticking into my side, and surgery affects and need medication- I know this. Received lighter prescription that helped. Will chat with surgeon in the morning about this lack of communication.
Become a little anxious about what is leaking out of me.
Monitor and breathe easier by the end of the night because there is much less than there was before.... which gives me hope that the drain will be removed soon.
Watch many many shows and a movie.
Then distract myself with many online articles, blogs, and posts about cancer.
Oh yeah, and sleep here and there. 5:30 am check on vitals every morning feels like a normal routine now, hah.

Appreciated this video. Helped visually explain about cancer cells, treatment, and more in quite simple terms.

Still need to return to reading Radical Remission, it is inspiring and hopeful and has some practical ideas that I've already been able to start putting into practice.
So... trying to distract myself, stay positive, and get thru the day one little step at a time. Haven't been completely feeling happy or terrific all day but overall, I'm surviving and thriving, grateful for all family and friend support, it is keeping me going.

Post Surgery The Good, The Not Great and the Breathing...

Well.
It happened.
My surgeon came to my husband and I post surgery to talk about the results.
There's good. There's not great. There's hope.
He showed me a picture of my lower right lobe lung and pointed out the cancer. Also the lymph node that he took out. Both were sitting on a sterile tray. The lung looked happy/red/pink and the cancer area looked like a bright blob of yellow. Disconcerting that my body does this to itself.

So.
Surgery.
What a waiting game!
We headed up to the surgery but when we got set up, the anesthesiologist wasn't there, he was stuck in traffic. Now, I get really sensitive on the ride up to surgery. I get stressed. Tears threaten to spill. I try to joke and refocus. So when the lovely nurse came to tell me about the delay she patted my arm. I flatly told her that she was going to make me cry if she continued to be kind and that I'd be better if we simply talked. So we did. For 20 minutes while the anesthesiologist showed up and set up the iv and more. It was the best thing to simply have a distracting conversation. Thank goodness she listened. And talked. Quite grateful.
She was shocked that it was the third time for me to be in that operating room in less than a year's time. I'm a little shocked still as well.

I was surprised at the pain when I woke up. It wasn't where it belonged. It was sharp pain in my neck and shoulder. It hasn't completely gone away yet. It was something where a past shoulder problem happened again when my arm was above my head for 2.5 hours during surgery.

They gave me ice and a physiotherapist came today and iced again and gave me a soft massage. She also gave me a new breathing toy that I'm not so fond of yet. Maybe later I'll successfully inhale air strong enough to make my surgeon happy. Shall see. For now, it is slightly painful to breathe deeply. I have a drain in my side going to a rectangular box. That drain hurts when I sneeze, cough, or do anything else extreme... Keeping me a little quiet.

The surgeon had good news. and not so good news. Here it goes:
He completely removed the main tumor site in my lung. He also removed a lot of my lymph nodes near my esophagus but many were stuck on the esophagus and he was careful to not cut there too much since it could create many other problems. So there are probably some cancer cells in me still. But I'm not done fighting.

I talked with my oncologist today and he explained to my husband and I that this type of cancer is rare (yeah, thanks body) and at my age it is rare to get as well (again, thanks body for going above and beyond) :) but the cells are extremely sensitive to radiation and that he is certain they will be killed during radiation treatment which will be combined with chemotherapy... when? Undetermined. He hopes to get more biopsy results on Saturday and then by next week start sorting things out.

Me? I'm simply focused on getting stronger after that surgery. Breathing in and making balls move.
Appreciating all the support and love from family and friends.

Came across a Facebook post I wrote a year ago- found it quite ironic considering that weeks later my first diagnosis occurred:
(Seriously, listen to your body when it is screaming at you!)

Preparation: Mental and Physical

Getting approved for surgery was the first step.
Mentally getting ready is a whole other ballgame.
I'm really am appreciating a meditation app presently- Headspace - https://www.headspace.com/
It is helping me refocus a little. I know I did my own form of meditation every time I was in the tunnel for radiation treatment... but this is purposeful. Different.
So, what's on my list in preparation for the surgery? (Surgery is this coming week on Wednesday, I check in at the hospital Tuesday.)

Work stuff: found out that I will have a substitute this time. This leads to many preparations- lesson plans, calendar planning, contact lists, author visit organization, and book fair planning... Feel like I'm only scratching the surface of the things I will address in the next week... but it can be done and worries will pass and I'll be able to refocus on myself soon.

Personal stuff: make sure my other blog is ship shape- I already prewrote 28 posts a while ago. Didn't know I was preparing for a break with a surgery, just had prewritten book reviews, life updates and such since I had a holiday and wanted to focus on work instead of being distracted on the computer.

Audiobooks: I might have enough energy and concentration after a day's recovery to listen to audiobooks... so I have focused on getting a few from the public library in addition to snagging a few from Audible. For months now I've been enjoying other audiobooks from free sources such as http://www.audiobooksync.com/ and other resources... but having a few adult audiobooks will be lovely to be distracted by... Downloaded a few. Plus have some great eBooks waiting to read...

Regular books: I don't plan to bring more than two physical books since I'll be home (hopefully) after 5 days... I have a load of books that I've committed to reviewing from Netgalley, so will enjoy reading them if I have concentration power.

Holds: I placed holds on various books - eBook and audiobooks - at the public library. I like doing this so I know some book treat is coming sooner or later.

Writing letters: I have some letters to write up... not to be morbid or anything, just want to write them now while I have the energy and reflection.

Paperwork: Dealing with random paperwork...

I know, I'm not going to camp. Just dealing with life and trying to keep positive.

I'm also researching and calming myself as questions come up. (Always the researcher, librarian in me comes out...)

I appreciated this Q/A website about lung cancer:
http://www.lungcancer.org/find_information/publications/163-lung_cancer_101/299-faqs

And this information on Chemotherapy for Lung Cancer:
http://lungcancer.about.com/od/treatmentoflungcancer/a/chemolungrx.htm

And I plan to watch some of these videos about people's experiences with lung cancer soon enough:
http://healthtalkonline.org/peoples-experiences/cancer/lung-cancer/topics

And then also helpful to read more on non-small cell lung cancer's treatment advances:
http://www.webmd.com/lung-cancer/features/non-small-cell-lung-cancer-advances-in-chemotherapy?page=2

I have random things flitting thru my mind. For example: the need to pack my breakfast for the hospital since I can eat until 7:30am and I know the hospital is slow at getting me food in the AM. I want to make sure I can eat before going into surgery later in the day... I also want to take my vitamins/medicine in the AM!

Surgery and Guardians of the Universe

Over the weekend thoughts:
Warning to parents who are dealing with cancer in anyway, if you want to avoid violence, or if you don't want to expose your child to swearing, look out for this movie. I enjoyed it overall. My kiddo enjoyed it overall. But at the beginning of the movie there was a opening scene with a little boy at the hospital with his mom dying of cancer. (She looked terrible...) My little guy leaned over during a part of the scene where there was a close up on the dying mom and asked "Mommy, will you look like that?" I whispered back, "I don't expect it." Sigh... Hard part of the day but he didn't say anything else and just enjoyed the film.

Waiting is hard. The surgeon postponed the appointment for a day. Glad to get into talk.

We talked for 50 minutes with him.

He was very positive and confident.

I walked away feeling ok. Not thrilled of course with any of this but ok. 

So, here's the deal... I have a mass- infiltration by lymphoepithelioma-like carcinoma in my right lower lung. It is non-small cell lung cancer.

I also have a growth on my lymph nodes.

He believes he can operate and remove both.

He would cut on my right side in three places- one for the surgery, one for removal of lobe of lung and lymph nodes, and one for camera.

I would have a video assistant thoracoscopic surgery.

He would remove my complete right lower lobe of my lung- there are 3 parts to the lung. He would also take out all the lymphatic and adjacent lymph nodes. 

The day before the surgery I would need to check in during daytime hours and do a lung function objective test. It would be at the hospital where I've had most of the other operations and radiation treatment. 

I would be checked in and need to spend the night at the hospital and then the next day would be the operation.

The risks: 

There are risks since this is a major operation and invasive.

1. I could get a wound infection.

2. I could get pneumonia or some other type of chest infection.

3. I could have bleeding since he is cutting through many blood vessels to remove the lobe of the lung.

4. I could have an airleak from the lung recession.

5. I could have lymph node leaks.

I would have pain but it would be under Dr. control with medication.

Recovery time- with my age, he expects me to quickly recover.

The day after the surgery he'd have me sit up.

The day following that he'd want me up and walking around.

He thinks I might even have better lung capacity after a year than I do now with the exercises he'll prescribe afterwards, etc.

He would keep massage devices on my legs for at least two days to avoid deep vein thrombosis in the legs... also they'd be on there during the surgery.

I would need to stay in the hospital for around five days.

I would need around 4 weeks to fully recover.

After 3 weeks, he would expect me to begin chemotherapy. Chemo cycles might be once every 3 weeks for 4 times. Chemo treatment all depends on assessing the removed lung/lymph nodes and after evaluating them, they can classify the stage of cancer I'm at... although my other dr. already said I am at stage 3 since it is in my lymph nodes.

He expects to do the surgery next week mid week- maybe Wed or Thurs.

Breathing a little easier (hah) since I qualify for surgery. Can't believe I'm going thru this again. 

Shall just enjoy the week ahead as much as I can...