Being Incredibly Controversial

My oncologist warned us. He said, "I know I've gone on what others consider a very aggressive route with your treatment. If you talk with an oncologist at the local hospital, I know this will come up as controversial."
Why yes.
Yes it did.
I haven't heard someone say the word 'controversial' that many times in the space of 20 minutes before. The local hospital oncologist said that my oncologist has gone the extreme route all the way through... including radiation, etc. The local hospital oncologist flat out told us that there are three choices that they could make to support me:
1. Do nothing and watch how I'm doing simply with scans, etc.
2. Treat me with chemo only partly with Taxol and Carboplatin
3. Treat me with chemo cocktail that my oncologist planned and gave me before: Taxol, Carboplatin and Avastin.
The oncologist said that in most cases they would only select #1. After further discussion with my husband about finances, our choices, and our plan, he said that he needed to get back to us.
He is going to meet with a panel of oncologists on Thursday and see what they suggest. Then my husband is going to go to my appointment on Friday (as my proxy) and find out what they say, possibly with me on the phone.
My husband said: "You don't need to form and opinion or think about this until Friday."
Ok then.
In waiting mode but grateful that there's an option we're exploring and that we're also in complete agreement that we are not compromising with my health plans.
If we go with the private oncologist I've seen the whole time I'd start chemo next Monday. But shall see what comes of the local hospital first.

Some interesting points this local hospital oncologist shared:
1. I reacted well in the past to the chemo but there might be new worrisome side effects
2. Taking more of the chemo cocktail might make the chemo less effective in the future if (god forbid) I need chemo again.
3. There's no proved research that says that more chemo is effective, many oncologists are doing one of the three options above without any collective data.

Hmm.
Controversial.
Just want to live day by day appreciating life, thank you. Trusting my oncologist at this point but forcing myself to be patient til Friday since money is a factor. Sigh.

Thinking about Bali, roof of one place we stayed at...

Today at work I received many compliments about how good I'm looking, healthier, etc. Some mentioned how nice it was to see the curls coming in. Sigh. I joked with one person "Just in time to get more chemo" and startled her. My sense of humor is still twisted a little tight I guess.
Glad I can see where I'll get back to hopefully by August/September/October (maybe I'll have curls by my birthday this coming year, that'd be a heck of a lot better than the past two birthdays) after this next round of chemo. I do feel a little whiny and have thought over the past few days how it just isn't fair. But what is fair in life at times? There are terrific wonderful days and there are tough days, riding those waves... Bearing up, dealing, and not thrilled but coping.

Thanks for journeying with me as always...

Reluctantly returning to chemo

Thanks Megan for joining in on our Bali adventure! So grateful...

Knew it was coming. Doesn't soften the blow though mentally I guess. I'm not worried about these last two rounds of chemo. I know what to expect, what is coming, etc. I'm just not looking forward to the experience for these last two times. It feels like I'm signed up for two more rounds of poisonous torture that must occur. I probably have one more week before the first round of chemo goes in. Looking into local hospital information still and also I need to talk with my administration before I can have an official appointment.

I know I'm going to lose my hair again. Not going to shave it off this time though. Will just deal. I'm not thrilled by this and am honestly quite concerned about what to do since I'll be working full-time during the last two rounds but shall play it by ear. My principal has given me permission to wear "hats" to work, probably will go with that. I'll transition from headbands that I'll wear for the next few weeks to hats. Don't want to go back to wearing a wig.
Learned about something interesting on a blog I follow today about a castor oil combo you can use to help your hair grow, support your skin/scalp's health. Shall look into it further when necessary.
http://wellnessmama.com/35706/castor-oil-hair/

Have had chats with my husband and son today about the information my oncologist shared earlier.
My oncologist said that it would be best if I continued with the same chemo combination for the last two rounds/doses... My kiddo was not thrilled to know that I'd have more chemo. I think he was watching my hair grow out and told himself that I was getting better. We talked for quite a while about how the medication would have the side effects we don't like/enjoy but that the hope is to get rid of cancer cells and have me around for a long time. He's accepted it and knows the door is open for more conversations. Never fun when tears come to my kiddo's eyes. My husband is stoic and there with me every step of the way. He also just got through another scuba certification course! So proud of him...

We had a fantastic family trip to Bali, not everything went as planned, but we enjoyed time together, time with our friend Megan, and many adventures. I'll share those on my Styling Librarian blog. Often it was way too hot for me but that wasn't too big of a surprise since I prefer happy-medium weather. I'm starting to think about moving back to Oregon more now. Mentally packing, picking what I will/won't need, and thinking about what we can ship ahead of time. When we move, we're not bringing back any furniture or anything like that, just 2-3 large suitcases each when we fly. I think the largest thing we'll have is our Dulcie dog's carrier. Will see about that. It was wonderful to see her after two weeks away, she's such a sweet good dog.

Shall see what happens in the next few months... grateful for my increased strength and appreciating the days my brain is sharp... will be especially patient with myself the next month and a half. Surprising how fast time has flown this year already. I look forward to the last 11 weeks of work. Feel lucky to be supported at work, with friends, and home as well...

Thanks for journeying with me...

Holiday and it feels so good

Made book earrings. Admire people who make jewelry so much!

Bali
Whoo hoo for a little time away.
Appreciate holidays.

Have to type posts on my iphone since my ipad won't let me on Blogger. Sigh. 

Here's something I've had on my mind... I really like not being the cancer patient with strangers. It's a weird relief. I never really enjoyed talking about my arthritis thru the years unless it randomly came up (usually because of my food choices) or would help someone. Now cancer really can be hidden as well. Hmm.  

Sure. My wonderful friend is here with us for this trip. She's keeping a close eye on me and having fun at the same time. (Megan has been around and supported me thru all three diagnoses plus chemo and weekly visits for qi gong, etc. Such a good friend.) 

Time with my husband and kiddo is treasured. Even the times when the kiddo is a little annoying and over enthusiastic, feeling lucky. 

I like not being mostly bald this trip. Not as much conversation about cancer.  I still get fatigued at times and need a rest but overall I'm not being held back and I'm having fun. 

I'm posting pictures on Facebook and instagram and will have blog posts with adventures included. 

For now just a few glimpses. 

Had fun working on batik. 

Like this picture my friend Megan suggested and took. 

Friend shared this article, really useful.
http://www.mindbodygreen.com/0-18004/the-ultimate-guide-to-cruciferous-vegetables.html

Did you just say "sewing machine"?

Another week buzzing by. Enjoyed these days at work and home...  Might be offline for a few weeks except a word here and there. Leaving my laptop at home while we travel this time. I'll have my iPad but am not as comfortable typing on that.

Grateful I booked an appointment with my acupuncturist on Tuesday. I was in a bit of pain in my back and chest. Plus my stomach wasn't treating me very kindly... the day after acupuncture treatment I felt incredibly better. Qigong that evening helped as well I'm sure... starting to make qigong part of my daily routine.

This afternoon I met the lymphedema specialist to see if there was anything I need to be concerned about or careful with and was quite reassured by the end of the appointment. I learned how to give myself a lymphatic massage and also he whipped out his sewing machine and created a compression garment that looks like half a corset made of stretchy fabric and foam cut to shape for my breast that has been painful since September. Just for sleeping though. Woo hoo to a solution that doesn't include something going over my shoulders. Thrilled. Presently I don't need to worry about my arm/legs but I need to be aware and careful of how they are feeling/doing.
If needed for friends in Hong Kong: Nathan Bridgeman was professional, thoughtful, helpful, and reasonably priced. http://www.cltvr.com.hk/mavista/cms/en/About_Our_Therapist
*I'm not quite over how quick he created the compression garment for me, this guy was a talented, experienced expert and I was thrilled to watch him make some of it on his sewing machine! Shall see how it helps me out. Doesn't feel like a torture device, just feels supportive. Plus, it was nice to work with an American who I didn't have to stumble with for communication...

There's nothing like having goals. Presently, there are many... but I'm not overwhelmed, yet.
First: trip to Bali. Grateful we were able to shift tickets and make this an affordable possibility. Especially happy that I have a break from treatment and can enjoy this with my family without being in a partial chemo stupor. (Fully admit, most of the first week of our trip to the Philippines I was knocked flat by chemo I'd received the day before our flight.)
Second: transition preparation. Getting thru paperwork. Getting thru purging. Going thru library projects so that things can be fantastic for the next teacher librarian and my lovely library assistant who has patiently dealt with project after project this term. I packed two boxes at school of personal items (bringing quite a bit less back to the US but that's ok). Going to begin using the postal system and mailing boxes home on a weekly basis.
Third: Chemo. Get thru the last to rounds. Meh.
Fourth: focus on the move to the US. We're down to 104 days until we're home. Wow. It is really going quick.

I'm trying to put cancer aside and enjoy the days. My husband did have to talk me down from a ledge last night when I started worrying about when I'd get the last two chemo treatments, etc. Shall see. He reminded me that worrying and wondering was useless until I see my oncologist in a few weeks.

Hey, there's more hair there!

It is funny to get so excited over hair. But I am. I got a little jolt when I noticed my baby fluff hair on my neck. Loved seeing my eyelashes back in full force. Nose hair? Meh, made me laugh. But having the hair on my head growing back makes me happy. It is odd how it is growing back but I see and feel curls! Hooray hair.

It is starting to hit me how much I will miss Hong Kong. I love the people I work with, they inspire me. I love my librarian friends, they provide such support, love and energy. I adore my Jewish community friends and am heartbroken to leave a community that I feel special and welcomed in... We have other wonderful friends that I'll miss too... Sigh. I know I've missed Oregon for the same reasons plus I miss my family a ridiculous amount but man, I will miss Hong Kong, it has embedded in me and there are so many things I think about on a daily basis that have helped me grow, stay calm, and learn over the past three years. Sigh. Had a good conversation today with my human resources contact who has helped me deal with the insurance nightmare and is quite kind and friendly... She was so relieved when she found out that I'm returning home to a job (I don't know what yet, but I'm hopeful/excited/happy) and that I'll have insurance. Yes, that is a big thing to be reassured by. She also liked that I'd be 5 minutes from my parents house... excited to move back into our old home... Very sweet woman. Appreciate the people that have been there for me and saved me over and over since August '13. 

I'm still glancing at my VirtueScope every day. (Helps to have it on the wall next to my side of the bed.) This is my month to focus on "resourceful"... Well, I've always felt that I'm pretty resourceful, but it has been a nice word to think about every morning. As a teacher librarian, I'm all about resources. As a blogger, I feel resourceful when I'm recommending books and websites and such. Hmm. Next month? Dignified. Hmm.

I sat down and counted out weeks. I've worked for 11 weeks now. Without needing to take a sick day. Wow. I didn't think that would be possible. Especially with still going thru chemo treatment in the beginning and all thru the darn radiation and side effects. 11 weeks. 5 1/2 weeks were radiation... After this holiday there will be 11 weeks more of work. Shall see how those weeks treat me. So grateful to my amazing recovering body. 

Well, thanks for journeying with me... shall try to post here and there while we're on this trip but never know about internet connectivity.

Plugging away and getting thru the days

Well. Got thru another week. Had a harder one, perhaps I'm pushing myself too much/expecting too much but I'm not quite feeling great. This is ok for me just making time to rest every day after work but I'm not thrilled with the pressure I feel in my chest and the odd pain I feel in my stomach area. I brought this up with my oncologist today and he said to be patient and that the pain is normal. Hmm. Chatted with him about plans for the next months. He said he actually now would like to skip giving me a PET scan and instead do the last two rounds of chemo first. Hmm. I look forward to seeing him on April 11th to find out more about his plans. I've been asked by insurance/HR people to go back to the local hospital possibly for the last two rounds of chemo treatment as the cost might be much lower. I will respect that request but if I feel that I'm compromising my health, I'll return to my oncologist. Cost is terrible and scary but honestly, I'm not taking any risks... we'll deal as needed.

I was happy about a few things, got teary eyed again about them actually- I've gained a little weight again, phew... nice to not get a lecture about eating... Plus my cancer tumor markers have gone down again a bit which I find reassuring. Darn cancer... really working hard lately to refocus my thoughts to the positives, anytime I have the negative ones creep in. Really challenging sometimes but overall I know I'm doing pretty well at keeping positive. Expected up and down days since I'm on break from treatment...

A few things to look forward to... holiday in a week and a wonderful friend joining us for most of the time, woo hoo... and then work thru the end of June... then moving home to Oregon early July! I decided to begin a countdown for the move home...  hooray to 109 days left to enjoy Hong Kong and Asia before the big move back.  Countdown

My good friend Lenore has returned to the US, sigh. It was so so wonderful to spend time with her and catch up. Grateful for the gift of time that we had together (plus fun time with other lovely friends as well during the visit)... Lenore was interviewed by another author friend/radio presenter, Reenita Malhotra Hora, during her visit on Hong Kong's radio station- RTHK, it was a fantastic interview!!
http://programme.rthk.hk/channel/radio/programme.php?name=radio3/state_of_the_art&d=2015-03-15&p=6684&e=299363&m=episode

Thanks for journeying with me...

Feeling lucky for special times with friends. Grateful... :)

Graceful... Grateful...

*I had a good weekend, appreciated the energy I had and actually went to a special event and enjoyed the dressing up/dancing/socializing time. Was grateful for a different venue. I also am enjoying every minute I spend with Lenore while she's visiting Hong Kong. Little gifts of time.

I just finished my last official Skype session with my life coach. We were supposed to meet every other week for 6 months but she adjusted our schedule to accommodate treatments and travel needs so we were able to meet over the course of all my chemotherapy and radiation and a little recovery as well. What a blessing to have a professional to meet with and provide inspiration and guidance over this journey. She's a gem. Highly recommended too- even with Skype and online connections, it was worth every minute chatting with her.  If you want to know who I met with visit Lisa's site: http://www.catchwellnesshealthcoaching.com/  Best recommendation my brother-in-law ever gave me (and he's shared many insightful thoughts over the years.) He knew Lisa because of their Iron Man team and how lucky I was to connect with her before my third diagnosis...
So, Lisa wrote up a recap of our sessions and time together and her view on my journey. Thought it was so beautifully written that I wanted to share on my journal here... Thank you Lisa, I'm so grateful for our time together. I really appreciate everything that I've learned and everything I've been able to add to my thriving toolbox!

From Lisa -

Catch Wellness Program Summary

Name:  Debbie Alvarez

Date:  3-9-15

You started this journey back on August 11, 2014 in hopes of rebuilding your strength after recovering from 2 rounds of cancer diagnosis, surgeries,  chemo and radiation treatment.  You were losing weight and wanting to re-evaluate your food and nourishment.  Sleep was a big issue and you were getting an average of 6-7 hours of sleep. You claimed you have a lot of worry.   You wanted to revisit yoga, dancing, and strength exercises.

Goals for 1 month, 3 months and 6 months:

We did not set goals since after one health coaching session you were diagnosed with lung cancer and were faced with chemotherapy and radiation.  This was a harsh reality.  You faced one month, one week, one day and one hour at a time.   

ACCOMPLISHMENTS

Food and Eating Habits:  You tried all my recipes and provided honest feedback on how they made you feel.  You added in noodles, savory foods, such as miso, green smoothies and juicing, variety of veggies, tofu, chia seed pudding, small amounts of chicken, more fruits, lentils, bone broth, kombucha, and soups.  Your helper made you meals around your nausea and low energy days.  The only cravings you had were noodles.  You stayed on track with 3 solid meals a day and were able to maintain and even gain a few pounds through the chemo and radiation!  This is incredible!  By November 2nd you gained 3 lbs.  Diarrhea became an issue during chemotherapy so you added in rice milk, which helped some.   You were very consistent with your healthy diet and maintained 3 solid meals a day with a lot of hydration.  I am super proud of you since this can be extremely challenging going through chemotherapy and radiation.  You never got sick and your counts remained stable overall!  This is a testament to your healthy nutrition and primary food focus!  

Overall Feeling of Improved Well-being: You amaze me Debbie.  You started out with so much worry and some anger around your diagnosis.  You expressed it being difficult to ask for help from others.   You have accomplished so much the past 6 months!  From the beginning you added in so many positive things that were tools for your toolbox.  To name a few:  Gratitude journal, Life Interrupted Blog, Audiobooks, Book reading,  Qigong, Acupuncture and Chinese herbs, Mindfulness Apps, Art, Inktober, Mindfulness exercises and breathing exercises, Yoga Nidra, Chanting, Massage, Legs up the wall, Cancer support group, Essential oils, and Visualization exercises.  You learned to say YES to people when they wanted to help you.  You asked for assistance during chemo and radiation treatments!  You really made strides and kept such a grateful and positive attitude despite all the harsh realities and challenges!  You went back to work in late December/January and have managed your career with grace even during the most energy depleting days.  

Family Eating and Other Improvements:  Your family has been a wonderful support.  Your husband, son, sister, and your parents have given you strength.  You have an amazing circle of friends, again, a true testimony of your character and grace throughout this challenging journey.  You even managed a vacation over the holiday.  You worked on meditation practice and visualization that got you to the chair and table!  Mindfulness became one of your biggest strengths, and worry lessened with practice.  You never gave up and never gave in.  You have reached a new chapter of your book.  What will it be titled?  What is the next step?  

You stated, “I still have control”  "I plan to keep it on a positive incline”  

Debbie, I really can’t express how grateful I am to have met you and worked with you on such a personal level.  You have taught me so much and I truly believe I gained a new perspective in life because of you.   You were dealt a mean deal of cards, but have managed this journey with grace, gratitude, strength and endurance.  I am so very proud of you.  Thank you for this amazing opportunity!  Please never hesitate to reach out.  

---

So touched to see Lisa's perspective on this journey. What an experience.

Thanks as always for journeying with me.

Toolbox plus A Good Week- Reflecting

Three of us had amazing juice for breakfast
and great conversation too!

I received a message from an app yesterday, Timehop... I saw pictures of myself sitting on a hospital bed. Wow. It has been a year since my 1st/2nd operations for breast cancer, second cancer diagnosis. I've been taking Tamoxifen for a year now. Keeping that specific cancer at bay. I've had pain from the scar tissue for quite a long time... but the new scars are starting to recover a little bit.
I am not one for marking too many dates in my thoughts every year. Loved one's birthdays are important, anniversaries as well but cancer diagnosis? surgery? Not so sure.

I've enjoyed the past week for so many reasons... it kept me hopping, not many down-time moments.
First there was a dear friend staying with us- feels like an empty hole in our family now that you're in a hotel Lenore, we miss you! Then there was an author visit at my school on Wednesday, what fun that presenter was, enjoyed the day taking care of his needs and laughing along with my students. Also wrapped up the second book week... a relief but special the whole time.

Every day I'm getting a little stronger, feeling a little better... actually walked 10,000 steps without feeling exhausted/noticing it on Thursday. I'm really excited about an event my husband and I are going to tonight. Shall see if my strength holds up.

I chatted with my life coach a few weeks ago about what I can do to maintain my health now that radiation is over. She's seen too many people crash/get ill once their body is done with the exhausting process of surviving chemo/radiation. Guess it is like how some go on holiday and get sick because they are relaxing for the first time. We talked about what my toolbox for health holds... what my practices are for feeling strong. I've thought about this over the weeks and I have a pretty full toolbox of good practices presently, some tools are used and the others are there for emergencies and needed times.

Tools I'm presently using:
1. Breathing and relaxing. When I find myself feeling nervous/stressed, I forcibly slow myself down, lower my shoulders, start breathing slowly and deeply.
2. Qi gong. I'm still loving classes once a week and know that the practice is happening on a daily basis. I use strategies when I'm feeling insomnia occurring and also when I wake up feeling lousy.
3. Yoga. I'm still enjoying classes once a week and am grateful for the focus time.
4. Yoga Nidra- once a week I'm still practicing this with a friend, grateful for her gifts of time.
5. Family time- my son's and husband's love nurture me.
6. Quality time snuggling with my dog. She slows me down and is such a sweet little love.
7. Walking - I appreciate that I can walk to most things here in my neighborhood- grocery shopping, MTR, and more. Just a few steps away. I love the energy walking gives me.
8. Acupuncture- I'm visiting my acupuncturist still. Just not as often.
9. Chinese herbal medicine- drinking it twice a day. Still dislike the taste but I'm consistent.
10. Tea- tumeric, ginger, green tea, mint tea, and more. It helps me start the morning off right and I also drink it in the afternoon/evening. Calms my stomach.
11. Squeezed lemon in warm water- I start the day drinking this.
12. Oil pulling- I still put a teaspoon of coconut oil in my mouth first thing in the morning and swish it around for 10 minutes or so and also I do this in the evening.
13. Essential oils- I use many essential oils every day. I really feel that they've helped me keep up my immune system and also helped my stomach on bad days.
14. Health supplements- I take many vitamins on a daily basis. Some I've taken for years to help keep my arthritis at bay... others I take now for better health.
15. Massage therapy- I have two more prepaid massages. Got one yesterday. It was lovely but painful. The woman I see knows how to do lymphatic massage and is incredible at working on the areas I tell her I have pain in.

Tools waiting to be grabbed:
1. Osteopathy- I'm going to see my osteopath in a week or so, haven't seen her in ages, think it will help to get my body reset after bedrest, etc.
2. Lymphoma specialist/physiotherapist- I'm going to see one for the first time in a few weeks. Will be interesting to learn from him.
3. Chanting- I haven't done much chanting but know I can.
4. Meditation- I haven't done much of this but know I can.
5. Mindfulness- I haven't used an app, etc. in a while.
6. Gratitude journal- I haven't written in one in a long time but instead am taking note of what I'm grateful for, think the journal got me into the natural practice of redirecting worried thoughts to  appreciation instead.
7. Art- I haven't doodled in a while. Soon. Soon.
8. Writing- I'm only writing lately in this journal and on my blog... soon. soon.
9. Eating healthy food- I'm doing so on a daily basis which includes green juice, etc. but haven't expanded my repertoire too much. Shall be pulling this out soon and finding new meals to eat since I've become a little more picky recently.
10. Insomnia solution- putting my legs up the wall- haven't had to do this for a while.  (Hooray for sleep not being as tough, knock on wood.)
11. Yuen method- I think about seeing the specialist and what he says frequently but haven't found a need to return.
12. Dancing- hoping to dance at an event tonight! Shall see.
13. Exercise- beyond walking I've been waiting to have a little energy, might be getting there. Haven't stepped into the gym we joined a year ago since August. Would be nice to go use the elliptical sometime soon. Someday I hope to build up energy to do Zumba again. That would be a beautiful thing.
14. Travel- this is something I love looking forward to and then also experiencing- going to Bali in 2 weeks, hooray!! Anticipation!
15. There's always room for more tools, right? I felt very healthy simply putting away a tool last week, my wig! Bagged up, put away. Hooray.

Well... enough lists, I love my lists.
Thanks as always for journeying with me...