Cut me a break darnit

Hair is growing out more!

Warning.
One of my most scattered posts.
Mainly because I've treated it as a quick journal over a few days and this is the first day I've had wifi. Hooray for that finally getting installed after 2.5 weeks being home!

Saturday- Well.
I'm waiting for Monday's appointment with a cardio thoracic surgeon and Tuesday's appointment with the radiation oncologist. I'm extremely frustrated with a few things lately. Like how records couldn't be passed to the two specialists until today. And then the radiation oncologist's office calls and tells me that they don't have the proper records. And when I call Hong Kong about this, I get a PDF that I need to fill out, mail back, pay on the phone record request forms costs, and then in 9-15 days I'll receive the records. Seriously. Cut me a break.
I did my research. Got very excited about one study. Only to find out that my breast cancer is a conflict and eliminates me from the study. I talked to another person who mentioned the same thing. Another place I didn't find the protocol appropriate, neither did my new oncologist... so that rules them out. And I'm finding that my oncologist was right, there isn't much in the way of immunotherapy treatments for cervical cancer (even though there is a specific one, I just don't qualify for it.) I'm NOT giving up though.

Saturday- I haven't been feeling myself for around 3 days. Pain in my back and chest is a little worse and my stomach is a bit of a nightmare. I'm trying to deal. Trying to stay strong and positive. But some days, I just want a stinking break.
Tuesday- **Update from this- OOPS, missed taking a pain pill for two days, that'll do me in... go into withdrawal- not recommended... add in stomach flu? terrible situation for anyone.

Glad to be back in Oregon so that if family are concerned about me saying I don't feel well they can drop by and check in with me vs. communicating via email/Skype. Beautiful to be so close to my mom, dad, sister and brother in law- plus so many wonderful friends as well.

Really appreciated reading this article:
http://www.bamradionetwork.com/edwords-blog/what-teachers-with-chronic-illnesses-wish-our-principals-knew
It has so much that I agree with. I went thru a few things that I decided not to share publically but if people read this article it would be helpful for understanding what anyone with a chronic illness experiences/thinks.

Monday- Ok... 
I have been a little distracted.
Too many things going on but in a mostly ok way.
Talked with another person in charge of a study I thought had possibility today and thanked her for not just saying "NO". What a relief. She said, "Oh, we try to help all people interested." Lovely attitude.

I went to see the cardio thoracic surgeon today and received no answers and a bunch of confusion.
Here's some confusing things:
1. The lymph nodes tumor in my chest near my heart isn't all cleared up apparently, but smaller... but the surgeon said the PET scan might be incorrect since it takes a while for radiation to finish what it is doing.
2. He doesn't totally agree that the tumors are metastatic cervical cancer, he thinks they could possibly be lung cancer (seriously?) I was really thrown by this one.
3. If it is metastatic cervical cancer, then he doesn't want to perform an operation, if it is lung cancer, he does. So... the tumor is there. Hmm. I'm annoyed about this one.
4. He will go to a tumor board on Thursday and share my case with numerous people and make some decisions and call me.
So. I walked away joking with my husband for a while and not quite believing the conversation.
Here's a "PLEASE DON'T DO THIS to another person situation:
When my husband and I were waiting for the surgeon, his student came in first to talk with me. Hmm. She began the conversation with "What are you doing here today?" Seriously, don't ask this question medical professionals. It makes people doubt your abilities and wonder about whether you even know about their case before you walk in. She actually had missed reviewing the PET scans- that she carried into the appointment- and after she walked out we waited 45 minutes more for the surgeon to come in. Hmm. I did tell her she made me very uncomfortable with that question and it made me wonder whether she had even read my files and she did clarify that they'd read the other documents, just not the PET scans. Hmm.

Love being home with my books.

I felt very good about how my nose works two days ago... I heard some popping noises and then smelled smoke coming from my dryer- which wasn't even operating at the time. Unplugged things and called a repair person. Today the person confirmed that we would have had a fire if I hadn't unplugged the dryer. We've ordered a new dryer- the old one was 10 years old, good life for it. Enough drama already.

Ready for a few mellow days. Oh wait, I have an appointment with a radiation oncologist.... oh my.

Thanks for journeying with me as always...

So you shouldn't smoke at the hospital

I felt very outspoken as I was waiting after radiation today for the bus. (Day 12, 18 left to go. When I look at a calendar, I have less than a month's time left now. Next Monday I'll be half way done.)
I was wearing my mask (as always) and waiting patiently... listening to an audiobook (very humorous memoir called I don't know what you know me from by Judy Greer) and suddenly a waft of cigarette smoke infiltrated my nose. Immediately I turned and looked at the people behind me... no cigarettes. Looked over to the opposite side of the waiting area, there he was- this French guy who came out earlier talking loudly on his phone... I yelled out, "PLEASE DON'T SMOKE." then pointed to myself "CANCER!"  He said sorry and moved a little away from the waiting area and closer to the 'No Smoking or Possible Fine of $50,000 sign'. Security walked out to talk with him and he quickly put out the cigarette and left the area.

Now. I hate cigarettes. Always have. I learned to hold my breath at an early age around them. My mom was a good influence on me for my ultimate hatred of all drugs (I'm happily an innocent one who never tried anything, was a member of Students Against Substance Abuse and other clubs in high school.) I blame cigarettes for my beloved grandmother's death too young. I was so proud when my dad finally quit his battle with cigarettes while I was in college (he never smoked in the house)... I also was tremendously proud when my brother in law quit smoking, but don't think I ever told him...

Since I was initially diagnosed this third round of cancer with lung cancer I totally was freaking out about cigarettes even more so than usual. You see, everywhere around our apartment complex are cigarette smokers. Seriously, walk down the steps, smokers, stand in line for the bus- smokers, walk down the street - smokers... Hong Kong has a terrible cigarette problem. I'm absolutely shocked at how many people smoke. And I worry for those people. I worry for everyone getting poisoned my second hand smoke. I am also personally concerned about my son who has adjusted to mom being a nutcase and he holds his breath too at times... We're up pretty high so I don't worry as much about cigarettes in the apartment (but we do have air purifiers). I will look forward to walking into clean air in Oregon though when we move home in July.

Did I mention that when we were in the Philippines there was a freaky moment when we were getting off a ferry and my husband went to get our luggage and my son and I were catching up to him and a person smoking actually touched his cigarette to my son's arm? Freaked my poor kiddo out (and me) and made my husband furious. Kiddo's burn healed quick, I had quick ointment to pop on him, etc... but man do I hate cigarettes.

The hospital is a place where I make that simple assumption that I should be able to breathe easily without worry of cigarette smoke. But. When I walked out of the Tomotherapy room to go change into my street clothes, I was quite surprised to have a breath of cigarettes waiting for me- there's an outside door, guess some of the people took a cigarette break there... so when I waited for the bus and was assaulted? I wasn't shy.

It has been an ok week so far. A wonderful friend came and picked me up and stayed with me on Monday for treatment and the clinic was running 20 minutes behind! We enjoyed the chance to sit and chat for a while and I was so grateful to sit in her beautiful car and get a ride home instead of ride the bus. Tuesday I had yoga nidra and received a ride to treatment, so grateful. Wednesday (today) I got a ride from a wonderful colleague who offered at lunch... appreciated that chance to chat with her as well.

I'm still enjoying qi gong, such a healthy practice and I find that the breathing exercises are helping me out with the random spastic coughing attacks I've had over the past three days. The main woman I chat with at the clinic reminded me that they are radiating the center of my respiratory system so coughing is a side effect that can be tampered with medication only, not water... will ask my oncologist about this on Saturday. Acid reflux is another side effect I'm watching for but gratefully not experiencing... yet.
Teaching and coughing don't mix too well. Reading aloud a novel and coughing don't work well together either. Sigh. Still enjoying work though. Having fun planning out literacy week, author visit, book character day, and more presently. Thank goodness the computer system at work is back on track. Relieved for that...

Enough brain dumping for today....
Thanks for journeying with me...

Roller coaster day

Prepare. This is a ranting one. Not so happy, positive.
Well. Apparently, one good way to make me cry and continue making me cry is to starve me for half a day and then request that I pay exorbitant fees on my own immediately. When I clarify such a request, tell me that if I don't agree to pay I can postpone all tests and treatment until I do agree to pay... that'll do me in.
The new receptionist at the clinic said, "Oh I feel so sorry for you." - My response? "Don't use pity on me, that isn't helpful and it makes me angry at you. I don't want to be angry please." She said, "Oh, I know." - do not tell a cancer patient that you feel sorry for them. Should be a lesson day 1 with someone dealing with them all day at a clinic...
I'm a bit of a nutcase when I don't have food consistently through a day. I'm quite good at feeding myself. Even through chemotherapy, I've eaten. Less some days but overall, I've never missed a meal or snack. So, when I got a call this morning that I had to fast before a CT exam this afternoon, I was surprised... wasn't told about this on Friday. I also forgot completely about the needle in the arm contrast that I had to have during the CT exam. *Think I would have handled it better if they'd told me info when I received the appointment paperwork on Friday. *Radiologist cancelled the MRI, said that my PET scan from December and the CT scan would be enough.
Apparently, another really good way to make me cry is to come at me with a needle and request to put it in the hand I've had chemo treatment in. That did me in quite nicely. He put it elsewhere.
Finally, another good way to make me cry is to be a kind sweet lab technician who knew me during the past two treatments who pats me on the shoulder and tells me to relax... yup. That'll do me in... Oh, and having to interact with my radiologist? Just icing on the cake. Him asking me to sign a release and specifically checking if I'm "comfortable" with the statement? No. I'm not comfortable with you telling me all the side effects and risks in a statement, not comfortable at all thank you. But I am willing to sign what I need to for treatment...
Today, the morning was lovely enough on an empty stomach... got to teach, run a battle of the books meeting with my students, and deal with paperwork and budgeting... but this afternoon at the hospital completely blew. From the moment I walked in until I dealt with further complications with billing at checkout. Glad to be home. Glad to have someone to call about the extra fees that I find questionable that I had to pay a portion of today... Glad to have time with my wonderful husband to vent before the kiddo got home. Glad I had food to eat...
I'm thoroughly embarrassed with how I handled today. I do not like emotional outbursts. I do not like crying. I barely ever have experiences like this. I now need a rest, feel like a little kid who needs a nap after a temper tantrum.
Tomorrow I begin official treatment at 4:30pm. Blech. I've asked that my husband be there for this first treatment in case there are further surprises and billing stressors. I'm ridiculously emotional this third round. Feel like I'm experiencing a smidge of what people experience with PTSD, post traumatic stress disorder, because going back into that tube for the CT scan today made me sob a little. Thinking of what I can distract my brain with for the 30 treatments ahead. Knew this would be hard. Knew it would suck. Sigh.   *Thank you to my beautiful sister for her plan to share special stories each day of treatment... quite touched, there's one thing to think about!
Talk about a roller coaster. Up down, up down... Glad I teach all day tomorrow. Love classes and am excited about what we're doing in the library.
Thanks for journeying with me...

Ho Hum Hat, Hair Loss Thoughts

So, we have a sweet fourteen year old dog who I adore. I love snuggling with her. She's adorable. Seriously. She's been my constant companion but is honestly daddy's girl. I'm good with this. You see, I'm a bed hog. I don't want a loving dog sleeping between my legs, chin on my ankle or any other sort of endearment, I need my space... (My poor husband.) And so... she knows she can snuggle with AH (Amazing Husband) any old time she wishes, just as long as she shifts a little when I'm around.
Why do I bring her up? Because she's calmed me this past week. Snuggled. Watched over me. And been the sweetest thing... Quite grateful.

Here's the look she gave me most of the time... 

'Are you going to pet me? Notice me, I'm right here!'

So, thinking about losing my hair totally blows. I've been appreciating it every day for years... Sure, I hated those curls for a number of years. Especially during my afro hair stage in middle school... But for years now, I love these frizzy, hard to control, boinging curls... sigh. So, I'm approaching the next round of this fight carefully. I'm working on my food regimine with a focus on gaining a little more weight. Enjoying the opportunity to have some healthy walking every day... and thinking about how to deal with hair loss. Now, I know, I'm not finding out my chemotherapy protocol yet but I am trying to be realistic here... It is more than likely that I'll lose the hair. (Not to mention my eyebrows and eyelashes, yikes!!)

A lovely friend shared with me a hat that she thought worked well during her chemo treatment... got me on a mission. A few days later I found a hat that could cover my head... found two actually. And a scarf... Thank goodness I found them when I was taking a walk with a friend so I could get her opinion on them, there were so many choices in the market we were at! I was a little overwhelmed but successfully chose two.

So my dog. Why did I bring her up? Because she barks at people wearing a hat. She barked at me ages ago when I came into the house wearing a hat and then quickly stopped... so I thought I'd better wear the hat for a day. For myself to see if I could handle it... for my sweet dog so she sees me wearing the hat before I really have to wear it. And also for my son, so that seeing me in a hat or other head covering becomes a little more natural before I deal with chemo side effects more drastically. 

Wearing a hat is hot. Especially in Hong Kong where the temperature is in the 90's plus HUMID. I feel like I'm hiding underneath it. But kiddo and dog didn't even blink twice at me wearing a hat. It was helpful a little bit with the sun glare but overall, meh, ho hum hat. Not so excited about that... Goodness knows how wearing a wig would feel. I'm looking into it all now though so that I can feel like I'm taking control, addressing what I can vs. feeling angst over the unknown.

My surgeon took off two of the three bandages on me today. It was freeing and honestly a little scary. He didn't want me to put on steri-strips to protect the skin while it healed which I had to do after the lumpectomy/lymph node check during round two of operations/fighting cancer. Odd to have someone who simply says, you're healing, looks healthy and fine. I told him about some of the side effects I've been dealing with and learned that I'm normal. I'll take normal I guess. He offered me cough suppressant but I turned him down. He offered me anti-inflammatory but I turned him down. Pain isn't too bad and the cough isn't keeping me up at night. The less medication I have to put in my body, the better. I'll see him again in another week, that's when he'll remove three sutures and the final bandage. 

I received more lab test results from him and it really does look like this third round of fighting cancer is actually NOT LUNG CANCER but instead another round of fighting cervical cancer that bounced (my word choice) into my lung and lymph nodes. Officially, I'm expecting my oncologist to tell me in two days that I have metastatic cervical cancer in my lungs. Meh. When I read about metastatic cancer, I became quite concerned about my prognosis. Will I live more than 5 years? Can I beat this? What will my quality of life be? My doctor has calmly walked me through things so far... Accepting that I need to deal with this day by day. Here's a little bit about metastasis: http://en.wikipedia.org/wiki/Metastasis - Yup. I referenced to Wikipedia... bet my librarian friends are laughing... But it is in normal people speak vs. so many of the other sites I've researched and read!
So, I'm concerned about how well radiation will kill these cancer cells vs. what my oncologist was happy about before with the lung cancer prognosis... and how well chemotherapy will help... and which type of chemotherapy will be prescribed... so fixating on wearing a hat- a good distraction.

It was a wonderful day today. I Skyped with one of my best friends, spent time with my sweet son and took a great walk with him, and also chatted for a while with my wonderful Rabbi who is introducing me to someone who might teach about Qigong, interesting practice. I chatted with my life coach tonight which always feels like an inspiring blessing. Plus my son gave me a double high five for getting all three balls in the breathing practice tool up simultaneously. I was proud of myself too. He said I need to practice more though so it becomes consistent. (Love that my kiddo is finding goals for me.)

Me in the slow hot elevator at the beginning of my wandering about day. 

Cute enough hat. It'll do. 

Inspiring me

So, I love when my husband asks me what I've done during the day. When life was normal, I'd fill him in on work inspiration stories... now that I'm recovering from surgery....
Some days, I'm a little productive. Take today... I finally made three phone calls and followed through on some paperwork all of which I've avoided for a while. I also had a wonderful visit from a sweet friend.
Other days, I'm just surviving. Reading. Browsing online. Not productive.
I allow the day to shape itself.
So far.

I've made sure to get myself out walking every day. I've been contemplating what I want to do when I'm dealing with chemo treatment. An inspiring friend walked 2-3 miles every day during her treatment. I would like to increase my stamina and recover from this recent surgery so that I could do something healthy every day during chemotherapy and radiation treatments as well. So, do I want to go for a weekly hike? shopping adventures around random areas in Hong Kong? visit all the libraries in Hong Kong that I can? explore new areas of Hong Kong by hopping on random ferries and wandering around a little island for the day? visit all the beautiful beaches? work on my manuscripts? go work out at the gym that my husband and I joined right after my breast cancer surgeries? Hmm. Options are bountiful, which is lovely. But will be careful to pace myself, read how much I can honestly handle...

I've had chats with friends about life.
That's valued time for me.
I've done so in person and also online.
I've organized playdates and hung out with my son and husband. That's treasured time.

I'll go to my first cancer support group activity next Wednesday. Can't believe I was diagnosed a year ago and I'm only just looking into this... but I did have a close friend who dealt with similar treatments who gave eloquent advice in my first round with cervical cancer and another good friend who helped me learn about new diets and healthy choices during my second round with breast cancer... CancerLink has some healthy activities starting up in October, I wrote down 7 classes like meditation, yogaa, chanting, and more that looked promising and will narrow down within a week.
Each round has been different. Enlightening in different ways. Grateful for the experience although I wouldn't wish it on anyone, ever. I know I'm growing as a person but honestly, could've grown without this type of experience.

Thought I'd share a smattering of what's inspired me in the world of fighting, living, and dealing with cancer... I've browsed, watched, and learned more through other's experiences. Really appreciate others sharing what they've dealt with.
So inspiring me recently were these- two videos and two articles. I mostly find these through Facebook groups I joined thanks to another friend's recommendation recently.
First, a brave man who shares what it is like with chemo, loved this video, love how connected he is with people at the hospital but can just imagine how many days he's dealt with life there... impressing singing!

Second, an interview - really appreciated the perspectives shared: (I appreciate following The Silver Lining and reading recipes and posts too.)

An article on how it is helpful to write your way through cancer? Why yes, thank you I agree:

http://copingmag.com/cwc/index.php/feature_article/write_your_way_through_cancer

Fighting cancer perspective: Does cancer ever win? Appreciated this powerful reflection:

http://www.ihadcancer.com/h3-blog/09-04-2014/Does-Cancer-Ever-Win

What else inspires me (to fight, stay positive, go one day at a time)?
Little special messages from my sister and happy thoughts from her.
Loving messages from my mom every day staying stronger than I am, ready to listen anytime.
Close friends booking time to Skype with me.
Wonderful friends writing and sending me messages about how they're thinking of me, praying for me, and more.
A friend who shared my name in her prayer circle at a retreat the day of my big surgery.
A friend who stuck in her yoga tree pose and sent energy and positive thoughts my way, then also shared my story with her classmates so they also sent positive thoughts my way. Across the ocean, received.
My son's consistent love, even when it is all about him (which is just wonderful for an 8 year old) he's such a sweet, caring soul...
My husband's persistence in providing me with happiness, love, and humor. I love making him laugh and it is reciprocated through conversations, tv shows shared, and more. So grateful.
My dad and other loving family members sending special messages.
Positive messages from my colleagues and friends from work reaching out and ready to help with anything needed.

I also appreciated these 100 Wise Words from an Econ Professor...

More Questions than Answers and Dear Body...

Dear Body...
I find this to be an interesting practice for anyone. Many might be bitter after an operation. I remember after my first operation, I looked at my long scar and sighed, told it, I know you'll recover, I know you hurt now, this had to be done, I'm sorry. *I barely see this scar anymore. The pain has subsided, especially after a few months went by from radiation treatment.
After my second operation, I looked at my little c scar and sighed, told it, yep, you're there, you look a little different but there's more coming with radiation... I'll keep putting stuff on you for healing. Said the same to the "S" scar under my arm from the third operation where lymph nodes were removed and checked.
After this past week's operation, I looked at my side and imagined what was coming. I have bandages all over. I know there are three scars. I know two were cut through my right breast which already went through enough with a lumpectomy and radiation less than 6 months ago, poor thing. Goodness knows how the scar tissue will feel this time. Goodness knows how radiation will make me feel this time beyond burned and tired and wired- will it impact my throat? voice? give me dry mouth? ruin my gag reflexes? give me sores so that it hurts to eat? What about chemotherapy? Oh vey to the imagination I have for reaction to that. I've watched the videos that have doctors saying that you can still work during chemotherapy and you can also still stick to an exercise regimine that both will combat fatigue... shall see what I'm able to do. I'm hoping to buckle down and work on my writing, look at this as a gift of time... sort of.

So, for now... here's my Dear Body:
I forgive you for being prone to multiplying cells that shouldn't be in me. I forgive you for being sensitive to food. I will accommodate you, care for you, and try my best to nurture you with patience, positive energy, and alternative treatments to balance out all this wonderful life-saving yet reactive modern medicine.

What happened this afternoon:
The Dr. appointment today was frustrating. My love walked with me away from the Dr. and we agreed, we were leaving with more questions than answers, that's annoying. I dislike that lab technicians are now giving conflicting analysis of biopsies and we have to wait another week for further decisions on treatment based on more lab tests... Right now they're thinking that I don't actually have lung cancer but a stray cancer that bounced up to my lungs from my cervical cancer... so cervical cancer that didn't just spread up? It just is there in my lung and lymph node? What if I had been treated with chemo back in November when I was first diagnosed? Could that have helped us avoid this exhaustive experience? Yes, I ask these questions. Of course I can't change the past but realistically they run through my head. Plugging my way along, working on looking toward the positive but accepting that I'm a little angry as well.

Oh well. Patience has brought us along this far... I do know now that my doctor plans to first give me four rounds of chemotherapy every three weeks and a month of radiation second. He mentioned that he might have some chemotherapy drugs that I'd have to take to make the radiation work well. They won't do anything for at least 2 more weeks so I can recover from surgery... Gearing up mentally for whatever comes...

Here's where my thoughts on "Dear body" above reflection came from:
There was a sweet girl, think in 2007 who started a meme called "Dear Body":
Without cancer example:

Today I came across a different "dear body" video for someone who dealt with cancer, chemo, radiation and such and was a survivor. Loved her messages to herself. I really honestly could care less about weight loss, in fact I'm trying to gain weight on this limited food protocol I'm on so that's beyond why I was touched by this video... I just appreciated self reflection and positive messages within both videos.

After cancer example:

Staying strong and positive but riding the waves through this journey...

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!)

The Waiting Game

I'm always thrown by how much waiting is involved with all three of these diagnosis. We have the waiting intially for test results, the waiting for a biopsy and getting it, waiting for the results of biopsy, waiting for surgeon appointment, waiting for the followup with oncologist for further analysis of biopsy cells, waiting for breathing test, and now waiting for surgery... and then after surgery waiting for decisions on chemotherapy and radiation treatment.

It is enough to drive me batty.

Which is why I appreciate all the positive supportive comments thru Facebook-email-here, the funny video distractions, the fabulous books I'm reading and listening to, the friend chats, Skypes, and more... so grateful for it all. The best distraction for me though over all that is family. Tonight as I sat in the hospital distracting myself, not really wanting to do those last minute to-do's. I was starting to slump a little. I'd had a breathing test (passed with flying colors), met with my surgeon and oncologist, chatted with the local chaplan, and caught up with nurses who remembered me from other hospital stays. I was honestly a little drained saying the same thing over and over to new people who didn't familiarize themselves with my chart before walking in (everyone). Repeatedly saying: "Yes, lung cancer, right side. Yes, I'm doing ok. Yes, I'm a little angry this time round at having to fight a third battle. Yes, I'm staying strong and positive. No the cancer hasn't spread, this is a third separate diagnosis. Yes, it is scarier this time...."

Talking with the surgeon was good since my husband and I were able to clarify how long the surgery is (I go in around 1:30pm and they expect to wheel me back into the room around 5pm with me being groggy/maybe waiting up for a few minutes after that.) I was able to ask about the pain a little more and the surgeon told me about how there will be a drain put into the bottom incision which has hurt sometimes with other patients because the tube will be pushed in over the ribs where there are many nerves so the drain will make it hurt a little when I caugh, talk too much/loud, sneeze, etc., oh boy. I had a drain before with my first surgery but it wasn't anything in comparison. This sounds more like the pain I had after the lung biopsy 1 1/2 weeks ago... but it is only for 48 hours (hopefully) so I will bear with it and just be grateful to come out of surgery successfully. (knock on wood)
He told me my goal is to sit up the day after surgery. Then the following day walk around this floor of the hospital four times in a row, that would make him really happy. So I went and walked around the circular smallish floor 20 times while listening to a new audiobook. Felt quite healthy to make that time.

Talking with the anesthesiologist wasn't my most fantastic thrill at 9pm... he came right after I got ready for bed and had my night guard in my mouth... It freaked him out a little I think. He talked with me about what would happen tomorrow, where I'd get medicine, how I might feel, where the needle would be placed for the rest of my hospital stay, etc. I pointed out how frustrated I was that the cancer is on the right side so I knew that all treatment would occur in my left hand- chemo, this needle for surgery tomorrow, etc... He told me he'd think on putting the needle in a little further up my arm so that my hand wouldn't be restricted as much... As a left-hander, I appreciate whatever can be done but as a patient I just said, "Whatever you think needs to happen, do it. Please don't change normal practice and what you know is best."

So family time. Since I am stuck at the hospital, I planned out Skyping with my son in the evening for our routine. I wasn't sure what I'd get from him with Skype since it is sometimes hit or miss with his mood with Skype. This time, it was simply wonderful to check in on his day, see a new lego creation he had, and have HIM read to ME... love when we trade off. He read a few pages of a book to me that we've enjoyed recently. I love hearing him read books aloud. It is a treasured time to see what he's thinking as he's reading, etc. I also sing to him every night. He was happy to get his bedtime songs and blow me a kiss goodnight... I don't want him to visit here in the hospital until I'm actually able to talk smoothly (might have that harder time talking after surgery, shall see) so I hope to Skype tomorrow evening when I wake up for a little while, shall see what possibility there is for that.

I look forward to distracting myself from the waiting game with time with my wonderful husband tomorrow who plans on hanging out in the hospital all day to make sure he's here in case there's something scary that happens. (Thank goodness his school colleagues are supportive as much as mine are...) I also look forward to Skyping with family... my very important sister and my wonderful mom and dad...

And so I hope to sleep, wait, Skype, chat, wait, and then go in for surgery.

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...

Call me Lucky, well, not so much

In some ways I'd classify myself as quite lucky. I am in an incredibly happy marriage with a wonderful, kind, patient husband... I have a son who is hilarious, kind, sensitive, and sweet. I have a loving family who I'm in close touch with. I have fantastic friends. I have a job I love. I'm passionate about so many different subjects and love learning...
I unfortunately have a flaw. My body apparently invites cancer to nestle in. Seriously.
I am a two time cancer survivor. I battled cervical cancer in November '13 and breast cancer in March '14. Yes, within less than a year's time my incredible doctor on a followup appointment found a tiny lump. Both cancers were stage 1. Both cancer treatments included operations and radiation. So yes, a survivor. I wrote other posts about some of my experiences with the operations and radiation...
But then my doctor and I wanted confirmation that treatment was successful. So in August '14, I went for a PET scan, that's where they inject you with glucose mixed with radiation and it goes thru your body and lights up areas that might have cancer. So, I waited a week. Results came back in a bound notebook packed with colorful pictures and even an accompanying disc.
And I heard what I didn't want to hear. I was waiting for, you strong person, you beat the odds, you're clear. Instead I heard, "Oh no, something is going on with your lymph nodes. And look here, your lung is lit up here and here."
I put my head down on my doctor's desk, heart plummeting. I'd tried to be so positive...
The next day I went in for a lung biopsy. That is one stinking scary test. Scarier than CT, MRI, PET scan, radiation treatment, and a needle biopsy for my breast cancer, which I also had...
For a lung biopsy, you're laid down on a CT machine and told to hold still, for 45 minutes. Not only that, you're in and out of the CT machine with someone sticking a long needle into your side and then scanning to make sure the needle was in the right place, then another really long needle is inserted into the other needle and punched into your lung for little miniscule pieces to pull out. Of course you need to hold your breath, breathe carefully, and more as this happens. After that occurs you have to stay still for four hours in case your lung collapses or you bleed too much. I was a very good patient with no complications... Doctors usually do like me...
Two days later, today, my wonderful husband and I went to the appointment that revealed biopsy results. Upsetting results. Somehow, for the third time, I have another type of cancer. Lung cancer. It hasn't spread from one place to another, it is just another cancer. This time, unfortunately, it isn't Stage 1, it is Stage 3 because there is a growth not only on my lung but also on my lymph nodes near my heart...
Tonight we had the conversation I never wanted to have with my son. In the past we were able to talk with our son about how I had bad stuff in me that needed to be cut out. This time I blatently had to tell him about the cancer. What happened in the past, what was successful... and what we have to do in the future with the new lung cancer treatments (possible operation, chemotherapy, and radiation). My son's reactions were: "Mommy, I like your hair, I don't want you to lose it." "What do I tell people at school?" "What if I'm put on the spot with questions about you?" ""Am I allowed to use the word cancer?" My response about the hair was, "I love my hair too but I love you more and I want to try to be around living with you for a long time." Our response about what to tell others was "Adults might know but if people ask, you can just say that your mom had to have an operation and she's going to take a while to get better." He seems ok but we left the door open for any further questions. His next question was, "Ok mommy, so I heard about that part of the day, tell me about other parts of your day now..." Not just a cancer victim, but a mommy, I love that.
So, on to fight the perilous, exhausting fight again... not fun, not thrilled but don't want to leave this earth anytime soon. Love life too much...

Possibly 3? Am I crazy?

So, it has been months since I blogged. In that time I've experienced the highs and very down lows of recovering from the radical hysterectomy, radiation treatment, diagnosis of breast cancer, lumpectomy, lymph node op, radiation treatment, and then a PET scan many months later.

I was feeling pretty good about life for the past months. I've adjusted my diet, lost weight unintentionally, had some fun travels, visited family and friends over the summer, and was hoping for a clean bill of health.

Again I got the yes, but.

Yes, you're clear of cervical cancer and breast cancer but now we see some growths in your lungs and lymph nodes near your heart.
What the heck?
Have I flipped a switch that said to cancer, "Here I am, have at me!"
What have I done wrong?
I had a clean CT scan of my lungs in November, now, not at all.
Have to have a lung biopsy in the am.

Can't find anything funny about a third possible cancer.
Just disgusted with the situation, grateful to the doctors, grateful to the medical professionals, lab technicians, etc.
So frustrating.
Biopsy on wedding anniversary no less, happy anniversary honey! I thought I'd go all out and really make you appreciate life... not so much so...

Been thinking about books to bring. Not like it is a campout or anything but I must preplan... Will not bring laptop this time but bring iPad, Kindle, and other things...
Quite a let down to have clear scans until...
Lung cancer is quite a bit more scary than breast or cervical cancer in my opinion. I have a feeling if the diagnosis comes thru, I'll have to deal with chemotherapy this time... and possibly radiation again... not looking forward to going back for radiation, hated it the last two times... burns on my skin, internal ache, side effects are there...

Nope, not positive but already ready for a fight... love life...