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.

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...

Bravery versus survival with grit

So, say at 40 your body goes to hell, I say, to hell in a handbasket.
Here's my journey from being a sickly one to struggling to rise above.
Often I've heard, "you're so brave..." my response is a respectful smile or thank you or combo of the two. But honestly, I don't think I'm all that. I just deal, try to stay positive, and hope to have a little fun along the way.
Having a doctor say "uh oh" isn't what you want to hear five months after a radical hysterectomy and more and a round of radiation treatment for cervical cancer, but my response of laughing saying "No, you can't find a lump and then choking up with a 'that's not funny' didn't calm me down or stop my doctor from finding a lump, very small mind you, but still cancerous in my right breast.
I'd say I'm ridiculously lucky.
I have a sweet healthy boy, a fantastic, patient husband, a wonderful supportive family, a job I'm passionate about.... loads that helps me pop up in the morning ready for another day.
Cancer? Pray for only radiation. Pray for it to be small. Please no lymph nodes. No chemo? I know I'm incredibly lucky.
What started this?
Good question.
Stress? Perhaps.
Poor diet or food that isn't healthy? Maybe.
Lack of sleep? Highly possible...
Luck? Not sure...
But I'm surviving with grit.

Positives about Radiation List

My Positives about Radiation list- round 2 of radiation, breast cancer treatment this round.
(Ok, they aren't all positive...)
I posted about how I had to have radiation after fighting cervical cancer, 8 months later, I was back in for radiation treatment again/Tomotherapy after having a breast cancer diagnosis, lumpectomy, and lymph node surgery...
Here's what I listed for this round of radiation treatment:

1. I now have 3 tattoos, quite tiny (as a pinhead) but they're tattoos.
2. It isn't chemo.
3. If you want 1:1 attention, fabulous, you sometimes receive 4:1 attention.
4. It isn't chemo.
5. You see a doctor weekly, well, that isn't fun.
6. You're provided with meditation time.
7. You receive special messages about staying still.
8. You're exposed to new clothes when the doctor says "no bra, built in support shirts"
9. You get to see what people do when radiation is on- run quick.
10. You can feel like the bionic woman.
11. You wear a lovely uniform each day.
12. It is short.
13. 16 days can feel like 4 months.
14. You are very aware of your skin.
15. You have a daily appointment each day that has a good strong excuse for leaving work.
16. It isn't chemo.
17. You can focus on keeping positive.
18. You can make new jokes and have a medical audience (in my case Chinese though...)
19. You know there is an end in sight.
20. It is only one way to help yourself.
21. Since v-necks suck with burns, you experience a change in wardrobe, again.
22. Many people pay attention to you, are concerned.
23. Excuse to buy new shirts.
24. Twinges make me more aware of my body as the radiation treatments progress...
25. Food changes = certainly in the right mind set.
26. Discover new restaurants.
27. Discover new grocery stores.
28. Watching healing process- nerves working better, skin not freaking out as much.

Tunnel Time: Tomotherapy

Tunnel Vision:
So, after recovering for almost four weeks from the radical hysterectomy, the doctors referred me to a specialist who said I need to have six weeks of Tomotherapy (radiology).
I'm around 9 days into Tomotherapy now and can't stand the experience but appreciate that I'm fighting off any other evil cancer cells that might be hiding out...
One of the nurses said to me "looks like you're used to the routine now" and I quickly said to her "it will be a habit I'll be happy to quickly break when the time comes.
They actually chuckled. It is a relief when people "get" my humor. I had a conversation recently with my mom about this. She is dealing with a medical professional who is someone who never gets her jokes... somewhat makes her uncomfortable.

So. In the tunnel. What is Tomotherapy and what happens to me while I'm in treatment?
I have to have Tomotherapy for 30 days. *Before I started treatment I had to have a CT scan, make a "cast" of my body so that I lay down precisely the same way for every treatment, and an MRI. I HATED the MRI, such loud noises, my ears were ringing afterwards!

I have to go all weekdays, mostly at the same time every day.
The time it takes to have a tomotherapy session is right around 20 minutes once I'm in the tube.
First I wait.
Then I change into a beautiful *not* set of pajamas and flip flops.
Then three to four people lead me into a room, get me to hop up onto the platform that holds my cast, and then begin by scooting out of the room.
They get the CT scan for around five minutes.
Then the bed/platform pulls slightly out when the computer calibrates.
I hear a click clack buzz from the top of the machine and then it clicks as the platform pulls back in.
I hear clicking and buzzing and know that the machine is in action for the next fifteen minutes.
After the treatment completes, then many people, once even eight people, come into the room and quickly scoot me off so that they can get ready for the next patient.
I change and try to catch a little green bus back to my area, catch the MTR and get home just in time for dinner...

What scared me? The side effects. I'm only at the beginning stages. Unknowns are no fun. Shall see.

Video examples of Tomotherapy:

The first video I watched about Tomotherapy:

Then I  watched this live video:

Talk show introduction: with a decent explanation:

Listen, seriously, listen to what your body is telling you

I'm grateful that I've had arthritis, juvenile rheumatoid arthritis, since I was thirteen. It has made me quite a neurotic person, tuned in to my body. I've been off medication for the arthritis since I was 18. That's when I almost had an ulcer from the NSAIDS that the dr. prescribed. I had orthoscopic knee surgery at 15 and found the recovery process quite frustrating and limiting.
So, neurotic. Yes.
This isn't a pretty sight following for gentlemen to read, sorry. Close and move on to a different blog.
Thanks. Now on to listening to your body.
I've been taking chances, risks and going on adventures for the past year and a half since my family decided we'd be risk takers and move to another country. This was due to a job opportunity that I had and a huge leap of faith that our family had moving overseas.
I've worked hard to enjoy and adapt to a new country and had a steep learning curve adapting to a new culture.
So. Listening to the body.
Here were my body's stages of saying, something is really wrong:
1. I was really fatigued, a lot in June. Couldn't figure out why.
2. I started spotting a little bit in June and worried.
3. I had an extra period at the end of June and was frustrated.
4. Went to the dr. after that and she said it might be fibroids. She did a pap smear- it was clear.
5. I went on a family week long adventure that included fun hiking, scootering and more... and continued spotting.
6. Quickly we turned around and went on another family adventure to learn kung fu. Part way through the week I started my period 2 weeks early.
7. I went back to my doctor and she sent me to get a transvaginal ultrasound that revealed that I did have fibroids. Discussed with doctor about options, she suggested an IUD which I considered.
8. I went back to work. Within a week, I started having the heaviest, scariest period I ever experienced. My body was screaming that something was wrong.
9. I went back to the doctor who put me on hormones to try to stop the bleeding..
10. The bleeding lessened quickly. Two days after taking the medicine a finger on my right hand started hurting terribly. The next day, the other hand had a finger that hurt. Then my wrists and shoulders started hurting. I decided it was the medicine. I went back to the doctor and scheduled the procedure to get the IUD put in. I also got permission to quit taking the main hormone medicine but continue the other so that the bleeding didn't pick back up. I was listening to my body, it was still trying to tell me something was terribly wrong. I went to three sessions of Chinese Traditional medicine treatment including acupuncture and mustard seed packs on my wrists and shoulders, no alleviation of pain until I got off the medicine.
11. I went to a specialist who quickly scheduled the IUD procedure for that Saturday. I went to the procedure a little nervous but hopeful that this would address the problem.
12. The procedure went fine until the doctor who was using a video scope noticed a large growth on my cervix. He took a biopsy and told me immediately following the procedure that he didn't put in the IUD because he needed to find out more about the growth.
13. I waited over a week to get results, that was terrible. I called, the doctor was out and then wanted to schedule an appointment to talk in person, emphasized that it wasn't a worry. We went to a family weekend fun trip which I'm still grateful we did... last time I had energy for excitement.
14. My doctor met with my husband and I to explain that I had cervical cancer, in what he suspected was early stage 1. He was concerned with how large the growth was and suggested I see a specialist. He explained that pap smears and a transvaginal ultrasound wouldn't reveal anything about cervical cancer and shared that this was a really lucky find.
15. After juggling doctors to sort out what would be covered by insurance, I went to a specialist... who sent me to another specialist within a days time. That specialist scheduled a radical hysterectomy with some lymph node removal as well.
16. The specialist warned me that I might need to get radiotherapy after the surgery since I had such a large growth.
17. The surgery went well. My employers were generous, kind, and supportive and I was approved for paid emergency leave.
18. I've been off work for four weeks, recovering from the surgery. Quickly after the procedure, my doctor came and confirmed that he wanted me to see a specialist and have radiotherapy...
19. I went to a cancer radiologist who decided to treat me with six weeks of Tomotherapy sending radiation to my entire pelvic region.
20. This radiologist gave my husband and I heart attacks when he pointed out that I have a rare form of cervical cancer with no known confirmed treatment but with a 40-50% survival rate without having radiotherapy. No choice in our opinion, getting radiation treatment. There was slight discussion of getting chemotherapy as well but my other doctor said "no" quickly since I had a biopsy of all my lymph nodes and had no signs of migration of cancer cells.

So now... still listening carefully to my body and dealing with Tomotherapy. (Radiation treatment, 30 days, Monday-Friday for 6 weeks.) Not fun but important.