A Little Hope? Yes, thank you.

Loved special sister time... My curls are starting to poof out!
Love each and every one of them.

Had an ok day overall. LOW energy. Caught myself falling asleep during something I found fascinating, frustrating.
Work was ok.
Went to radiologist. LONG appointment.
This is a doctor who doesn't give up.
She doesn't want to radiate any time soon. She really wants to wait since the tumor is exactly where I've had radiation before... she's concerned that the radiation won't work well and will actually further aggravate my esophagus... I understand why she's concerned and honestly appreciate it... even though I also have that attitude thinking, "darn it just zap the heck out of those tumors already!"
I told her how upset I was over the stagnant course of treatment and within an hour she found a new oncologist who is providing me with another bit of hope.
I have to go get yet another PET scan tomorrow. Oh boy. Hate those when it is at noon, takes 3 hours and I have to fast 6 hours in advance. Blech. But at least there's something happening! I also have to get a MRI brain scan soon.
Possibilities for immunotherapy are there. Shall see.
Found out there might need to be a stint placed in my esophagus... will see a specialist Thursday afternoon and find out more about that. Yikes.  Hadn't heard about getting a stint before. Glad to have a doctor who covers her bases and knows what is going on. Saw a scan of my esophagus, there really looks like it is closed up partway down it...
I appreciated getting the suggestion to sleep more at an angle to see if that can help all my swallowing/coughing issues in the mornings. Here's hoping that works. My parents passed me a pillow and my husband picked me up a few more pillows as well. He referenced The Princess and the Pea when we looked at all the pillows piled up...
Really grateful for the appointment. Amazing how much more relieved I felt after the appointment. Give me a little hope people, that's all I ask...
My radiologist even called me later in the evening to fill me in on the referral. Love how she works and thinks, really appreciate having her part of my medical team...
Caught up with my favorite massage therapist the other day, was so refreshing and helpful... Grateful.
Less pain as well.
Going to qi gong classes on most Mondays and even get to see a beautiful friend when I go to class... good incentive. Really enjoying this instructor even though it is very different from my past classes.
Shall see how the rest of the week goes.
Thanks for journeying with me...

PS My love and prayers go to the Traller family. Heartbroken after learning the news that Nathalie died last night. She provided so many with a beautiful light of energy, love and hope. She has touched so many people and will be remembered through future years... The advocacy and fundraising for ASPS and children with cancer hopefully will help future children who have this diagnosis and others. Although noone should ever have to deal with cancer. Let there be much more research for rarer forms of cancer....

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...

There's no place like home

Being home is quite a blessing.

I miss our friends back in Hong Kong but I do not miss slow elevators, apartment living, or pollution. I do miss walking to places vs. all the driving it takes to do things… It is lovely to be back in our old home after three years away. Quite a relief to have our dog home with us happy and healthy. Being able to go visit my family members or simply call them on the phone is beautiful.

We’re adjusting to life well enough here in Oregon. I love the temperature, feels pretty darn good to have a cool breeze. Getting together with friends and former colleagues is special too.

We now have some furniture and I got pictures up all over, so it feels more like a home now. Cannot believe how many books we’ve saved, I’ve unpacked them and am taking my time with various projects before I enjoy organizing them all.

I’m excited to have a job in my old school district, this time with a heavier focus on technology which is just fine, looking forward to having a new work home to settle in. Waiting on a few boxes to arrive from Hong Kong and organized another workbox at home to bring in… Not much since I cleared out and scanned everything that was important to me three years ago.

Today I went to my new oncologist. There is no miracle cure. There is no real solution presently for me- especially since I have metastatic cervical cancer; there are no trials presently for this cancer. I told my oncologist that I was frustrated to not find any people that have my cancer/stage to follow and learn about trials from and he said that’s because they are dead… Honesty. I’ll take it, I guess. He also said that if I did nothing, my tumors are in places that could grow for the next year and I could have around a year or so of life without any treatment… hmm. Abysmal but at least we have thoughts on things…

The oncologist said that he’d refer me to three specialists- cardio-thoracic surgeon to see about removing the lymph node up behind my lung on my back- my oncologist liked the idea of at least getting a sample of the lymph node for genetic testing… (I immediately thought about my nightmare experience with the needle sticking out of my side with the biopsy on my lung a year ago- in and out of the CT scanner with that needle sticking out- hold your breath, don’t breath, ok, now breathe… ech. But I know this is a very different area to biopsy/operate on… nerve wracking anyway…)

He wants me to meet with a radiation oncologist to see if it is even feasible to radiate the lymph node – if this lymph node is anywhere close to the other radiated area, can’t do it, shall see.

And also I will be sent to another doctor who is facilitating medical trials on immunotherapy. All the immunotherapy drugs presently on the market are more for others like breast cancer, lung cancer, skin cancer patients, not at all cervical cancer, so there’s a long shot for finding anything that might fit me. Shall see. I’m good with trying to find that long shot. My oncologist wasn’t certain what might be going on with my other tumor on the adrenal gland. He’s not as concerned with that tumor as he is the lymph node in my chest cavity since that lymph node can cause more problems quicker.

I need to research on immunotherapy options myself as well. My oncologist said that he’ll do his research and try to find as many options and possibilities for me. He said, “I can tell, you are the type of person who wants to explore every option. You won’t be happy unless you feel like you’ve left no stone unturned.” Very true. I explore, I research, I care.

So… here I am. Home. Adjusting. Appreciating life. Not adventuring much yet. More just enjoying the day-to-day life experience. Not quite relaxing yet but I’ll get there. Organizing is one of my specialties, so I’m enjoying the energy and stamina I have to complete projects. I love being able to do things right the first time if possible. Getting things sorted so that we can locate and enjoy them later is a beautiful thing… Happy to have a little time to do so. Now, also want to make more time to read again, books are beckoning and the public library is just a hop up the street. We don’t really have internet for another week, but finding ways around that presently but can't upload any pictures to accompany this post... I'll be flexible...

Thanks as always for journeying with me.

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.

Third time saying DONE

Hallelujah.
   Grateful to be done with this radiation crap. Walking down the hall every session. Going into the room to remove clothing and jewelry each time. Putting it all in a little locker and wearing the key bracelet down the hall. Putting the key on the little counter. Kicking off slippers, climbing up on the table, fitting into the body cast, laying down with arms painfully above head, covered with a sheet, adjusted left and right writing on my skin near my "tattoos", getting my other tattoo checked in the center of my chest, covered up in a fleece blanket, and going in and out of the tube... Done. Done. Done. So grateful to be finished. Hallelujah.
   Loved when I heard the words, "Ok Debbie, for the last time, it won't be long now." Brought tears to my eyes. She knew I was listening. Lovely woman... Hope she helps everyone like she did me... so kind and patient with my questions and always a smile when I came out of the changing room.
   Can't believe I have gone through three rounds of radiation treatment. This one was the most amount of treatment days. This one was the oddest because I was focused on the radiation going and killing a specific cancer tumor vs. just killing possible stray cancer cells after a tumor was removed.
Now. Waiting. Healing. I know I'm still burning from the inside out. I'm grateful to not have my skin burning this time though. I'm not fond of the side effects, but I know I'm lucky in comparison to so many others who went thru radiation in this area.
   Tomorrow? Happy to not be heading to the hospital after school.
   The next day? lung x-ray... gotta dig thru my x-rays to find my other old lung x-ray so they can compare and see if there is any damage. Then time to see my oncologist and see what he thinks and when he wants me to have that PET scan.
   Getting thru. Day to day.
   Wiped out presently. Shall see how I'm feeling in a week's time. My husband is happy I have a little recovery time. I need it. It takes over a month to feel almost like myself after radiation treatment. I remember this all too well. Energy is low. Healing is slow.
One other thing to be grateful for is not having to see that radiologist. I've been anxious the whole time I went for radiation treatment because the last two treatment rounds he made sure to see me part way through and at the end. Glad he never was there. Perhaps my oncologist told him to stay away.
Really glad that he did his part planning how the radiation should go and then let the experts run the machines and take care of me. Goodness I'm grateful. Need to stay away from his negativity as much as I can.
   Moving on. Moving up. Treating myself with care. Hoping to get over sleeping issues I've had this past week sooner than later. Shall see. Same with the neck pain. Appreciated emailing a lymphodema specialist to find out more about how to treat my neck. So glad that I learned about risks. Now I know what to watch for and how to treat my body, especially good to know to avoid heat and ice packs... I certainly want to meet up with him soon but waiting to talk with my oncologist about it first.
   I did get to celebrate a little bit after treatment by attending a Hong Kong librarians meeting (love my colleagues) and meeting a wonderful, talented author and illustrator. Then I came home and slowly ate dinner, redirected my brain to a few shows, and chilled out with family...
Many thanks for all the support all. Appreciate you journeying with me. Feels like a major step I accomplished today, even for the third time...

Goodbye locker. Goodbye hospital gowns.
Goodbye yucky hospital slippers. Goodbye treatments.
Thank goodness.

Only 2 more

Getting thru the days. Enjoyed visiting an Indian Food restaurant, delicious place. My husband said, "Wow, I'd get this takeout food every day if I could get you to eat this much at every meal." Nice to have an appetite and like food... PLUS we ordered take-out the next day from the same place, y-u-m. Yes, I'm addicted and my husband is ever so supportive...
I'm quite happy that I'm looking at final two treatment days. Pretty exhausted. Painful to deal with treatment but I'm grateful to not be burned on the skin this time. I think the main thing bringing me down right now is the shoulder and neck pain I've had since the first day of treatment. Putting that right arm over my head has exacerbated the pain... not certain how to handle it.
Normally I'd put ice on a pained area or a heat pack but I recently sat through a presentation about lymphedema and one of the recommendations was that I avoid a sauna, hot tub, or anything that makes my skin pink... also I'm supposed to avoid having anything freezing on my skin. That makes things quite limiting.
I learned also about how lymphedema occurring in different quadrants based on how the lymph nodes work... Unfortunately, I've had lymph nodes compromised in 3 areas of my body. With the cervical cancer, they harvested lymph nodes. With the breast cancer, they harvested lymph nodes under my right arm- go figure, it is my right shoulder that's in pain... With the metastatic cervical cancer, they removed a portion of my lymph nodes near my heart, those are the ones that are getting radiated presently. Think I should see a specialist to check on my lymph nodes, learn if I need compression sleeve, etc. Shall be chatting with my oncologist about this on Saturday when I see him next. Quite disconcerting but good to be aware I suppose.
Now to finish my long countdown from 30 to 0. Will be really happy to get there finally.
My husband snuck this picture of me when I was snuggling with our dog today. I'm pretty darn fatigued lately... My hair is growing in quite nice but I know it could all go away with those last two chemo treatments, sigh. Shall see. Personally the thing that stands out to me is my eyelashes since they are mostly returned now... I somewhat almost can see myself and see a healthy person again...
Thanks for journeying with me, really grateful...

And then she said...

Decided to type a little bit.
I'm not shy. I used to be, not so much so now. I find teaching/learning opportunities all over the place, don't you?

I had the lovely opportunity to teach about kindness and manners today.
"Please don't point and me and yell 'Woah!', instead, could you please say 'Mrs. Alvarez, you surprised me with this hair change.'"
"Excuse me, when I say 'Good morning' and you don't say anything and just giggle to your friend as you go by, I think you're laughing at me. Instead, could you say, 'Mrs. Alvarez, I'm noticing your hair is different' or 'Good morning' please?"

"Mrs. Alvarez, what did you DO to your HAIR?!"
"1. Yes, my hair is different. 2. It is colored different. 3. It is rude to interrupt, can you see I'm running a battle here?"
- battle of the books competitions began today, always tough to see teams losing but love seeing everyone stocking up and reading more books!!

Dialogue:
"Mrs. Alvarez."
"Yes."
"Is this your hair?"
"Yes"
"Did you color it?"
"Yes"
"Were you wearing a wig before this?"
"Yes"
(This was my favorite dialogue, straightforward, honest, and moved on with things quickly.)

One sweetie walked up to me, "You changed your hair, it looks like my grandma's hair now!" I thought to myself, you've got a cool grandma then... but also gave her a look like, seriously?!

Only one student asked, "Seriously, what is going on with your hair, can you explain to me, please?" - I handed her the book Nowhere Hair - love that picture book, so thoughtfully written- during the lunch since I was running a battle and couldn't chat, told her it was a similar situation to mine... She's a caring sweetie. Shall chat with her more soon.

Some kids gave me huge smiles.
Some gave me wide-eyed shocked looks but then smiled and said "Hi"...
Other kids came up and said they loved my new style and color.
My colleagues were beautifully supportive and kind and I appreciate them to bits.

Yeah.
Hair.
Think it will take at least this week to muddle thru the confused looks and conversation. I do have 700 students to see eventually... I only saw around 220 today, maybe a few more... Now WHAT will happen if my hair all falls out with the last 2 rounds of chemo? I do have permission to wear hats... le sigh. Don't miss you wig, not a bit.

Why am I letting the PET scan loom over me like a storm cloud? I hate "what if?" things. I just want to have a few weeks off... got thru #24. 6 left. That's 1 Monday, 2 Tuesdays, 1 Wednesday, 1 Thursday, 1 Friday. One day at a time. I'm exhausted today. Already curled up in bed. Enjoyed work. Ok staff meeting. Appreciated a lovely friend walking me to the hospital and chatting with me for almost an hour when the clinic ran late, what is with them and Mondays? And glad when the minibus arrived just minutes after I went to wait for it... Not much appetite today. Forced myself to eat lunch. Ate a small portion for dinner. Hoping for better tomorrow... Shall see. Funny enough my appetite is weird and I just want bad food presently like macaroni and cheese-- from a box thank you--- and Ikea meatballs- greasier the better, thanks... yep. I know what it would do to my body. Nope I'm holding back, mostly. Yep, I will eat mostly unhealthy crap if that's what it takes to get food in my body. Shall see!

Thanks for journeying with me... was brave today, was slightly scared, and did I mention I adore my colleagues for their supportive conversations and then other topic discussions as well? Grateful...

Peeking over the shadow

What I can look up at during lunch duty at school...
Bauhinia tree

20/30 done 10/30 left. Brain always goes to chemo after thinking about radiation but I guess this is natural. Will celebrate the days in between.
Been thinking about life...
How I keep thinking that I'm a shadow of myself... can tell I'm hitting that fatigued state that I hit during the last two rounds of radiation. I remember being annoyed with myself the past two times but this time I'm working to be patient and loving with myself.
If I have to be a shadow of myself, I need to try to be the best shadow of myself. What do I like most about myself? Where do I direct my energy? Why should I dedicate any time for worry or anger that could be focused on love and support?
Working to think out activities... I'm excited  that we've changed our plans and now are able to have tickets to move home to the US in July and also visit Bali. We're going there for Spring Break/Easter holiday. Very happy and curious to see what we get to do. I'm slightly sad to not get home over the coming holiday but since we're moving home, it feels wise to travel cheaply and adventure a little more in Asia.
Have focused this month on sharing my sense of humor with others... making children laugh? a treasure. Making my son laugh? HAPPY day. Hearing my husband laugh? warms my heart... When I actually laugh aloud? Rare. I usually laugh in my head.

Here's something that made me laugh aloud recently:
I was chatting with some of my older students during their lunch break in the library the other day. One reader was holding a book I adore (and actually even mentioned here before) - Because of Anya by Margaret Peterson Haddix- the book is about a girl who has alopecia areata- losing all hair. Talked with the girl and others about how I cut/donated my hair to Locks of Love in the past. One student said to me: "That's quite funny Mrs. Alvarez because some students were saying that you were wearing a wig but instead you've donated your hair for a wig!" I said to him, "I did that a long long time ago... Hmm." Later I chuckled and chuckled about this...

I haven't talked about wearing a wig with any of the kids. But I do have permission to wear a hat at school now. Quite comfortable when I have a hat on... Shall see. I do know that this past Friday I told myself that I no longer would wear the wig to school. Hoping to not place it back on my head, shall see. Enough about wigs and hair.

Little baby eyelashes are starting to grow out now. Once again I had that thought at first, "huh, thought I washed off my makeup last night. Oh, that's little hairs growing out!"
Going to start writing lists again to prepare for the July move. When to provide notices, pack, mail boxes, deal with paperwork, and more...

So grateful for this break from work.... Long naps and sleeping til a normal hour is just beautiful to enjoy. Makes days go by and treatments a little bearable.

Interesting information on mushrooms that can prevent cancer here in this article, a lovely friend sent it my way...
http://www.positivehealth.com/article/cancer/cancer-killing-medicinal-mushrooms

Getting through the days... one at a time.

Thanks for journeying with me...

Day by Day

I'm here.
Appreciating life.
Taking things day to day.
Grateful for thoughtful conversations, fun times, teaching and reading aloud time, learning opportunities...
Finding places to laugh, even in serious moments, even if I'm only laughing inside.
Happy to have a holiday for more time to rest and recover, spend time with family, relax with my dog.
Looking ahead and planning my future a little.
Staying positive, hopeful, and smiling.
Ignoring pain for the most part, thank goodness for a high tolerance.
Making others smile.
Making kids laugh.
Appreciate every day.
I'm here.


Just taking things quietly at the present moment. Hitting the halfway mark on Monday with radiation was a relief. Did a loud WOO HOO when I got off the Tomotherapy table. Knowing at this point I only have 12 to go is bearable but also a little intimidating. Not letting myself fret but have medicine on hand as side effects could rise. Taking things as requested by my doctor.

Attended an essential oils workshop, learned a little more, appreciated being around kind folk of CanSurvive (CancerLink support group)... Was slightly disappointed that nothing really related to cancer in the workshop, more just about the basics which was just fine, also had my hopes though...  Looking forward to appointments I've scheduled in the next week and also those days with absolutely NOTHING planned. Happy to have that gift of time coming.

Coughing still sucks but I've mostly found my voice again and can enjoy classes.
Pain still is there like a little tiny brick nestled in between my lungs but not as terrible as I expected.

Friends have been giving me rides to treatment, so grateful. Going in and not being exhausted and out of breath is a gift.
My sister's blog posts are a little punch of energy that I think about when the CT scan goes at the beginning of every treatment. Then I silently talk to the radiation and the cancer cells and my heart, lungs, etc. about how things will get better, how cancer cells can just let go and die already, and more. Relieved to have breathing exercises that stop me from coughing during treatment.
Proud of my kiddo who had an art exhibition with all his classmates. Appreciated getting to listen to him and his classmates talk about what they learned with their unit of inquiry. Proud of my boy for his enthusiasm and excitement in learning- my little smart sponge.
Listening to one of the best audiobooks I've enjoyed in a while- As You Wish- Inconceivable Tales from The Making of The Princess Bride by Cary Elwes - brilliant... but I'm quite partial to The Princess Bride...

Happy days to all.
Thanks for journeying.

Appreciated this flower during my recess duty...
blooms in the middle of winter here in Hong Kong.

Dog and Hair and other mind meanderings

 My Dulcie dog is snoring next to me. I adore her. I did learn something though. I lied to myself, I lied to others. Dulcie is actually 14.5 years old, not 13 (I feel like I've lost 1.5 years of life with her) oops. I honestly knew this, I think. She's going to turn 15 right after we move back to Oregon. Oh boy.
Getting older is the pits sometimes, can't believe my girl is over 100 already. I'd love to get older though, wouldn't complain at all. Love life...

So, hair. It is growing out. I learned from many others who share their experiences that your bangs area is the slowest one to grow out... sigh. That's where all my grey is. Shall see.
Wig. I'm wearing it, still doesn't feel like me, still flops in my eye and makes me miss my curls...
I've talked with a few good friends who have honestly told me about when they quit wearing their wigs and went public. Personally, I know my hair is long enough now that I could be free of the wig. I know it. I'm just not ready for the shock I'd give my students.
1. Because it is so darn short
2. Because it is so darn grey
3. Because it is so darn straight
4. Because the darn chemo might make it fall out again after radiation...
Shall see.

My kiddo took a picture of it. (One friend took a weekly picture of her hair to see the progress of the grow out. It was interesting. Appreciate her trust and support...)
I know I need to wait 3-6 months after chemo before I can dye my hair... so says websites and such.
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/using-hair-dye-after-chemo

This also was a little more helpful... more about natural hair dye: (I just want to be brown, no bleaching, etc... sure wouldn't mind trying out henna, hmm.)
http://www.herbatint.co.uk/herbatint/features/herbatint-article.php?id=50

I went to an organic shop and picked up henna hair dye and will try it out sometime. Talked with my oncologist and he said he didn't think I should waste money dyeing my hair since it will possibly fall out again with the two other rounds of chemo... sigh. Told me he was concerned about damaging my hair- (MORE than chemo has damaged my hair?!) Not like I'm bleaching it... ;)
Shall see.

I'm almost half way thru radiation. Day 15 on Monday. I can feel it. Honestly. In my chest it is like a little ball of pain. Hopefully that pain is all the cancer cells dying. I really appreciate the weekend. My oncologist prescribed me with three more medicines- one is acid reducer- returning to taking this after being free of it for 4 weeks. He said it is to protect my esophagus...  I somewhat find it funny that on the back of the box there a "poison" sign?!
Then he prescribed me with Sucrate gel that I'm supposed to take 1 hour before I eat- sigh... the timing of that couldn't be worse- shall see how I do- it is to coat my throat down thru my stomach to help me out if I get worse- don't have to take it yet... He also prescribed me this cough syrup called Comephen- there's codeine in the ding dong stuff, not at all excited. Plus sugar is part of the ingredients of the syrup. The coughing while teaching has sucked but I'm not certain it is bad enough for me to be on codeine! Shall see. 

Loved the weekend because I enjoyed wearing a hat the whole time vs a wig... freedom- a little bit.
Enjoyed hanging out with family and friends this weekend, grateful for the time AND energy. Also appreciating yoga on Saturday mornings, good to have the class to learn in and help my body heal in... amazing how much I've back slid physically compared to my time in yoga three years ago. Working on being very patient with my body as I take the class.

While I was browsing the web I learned more about nail care, good info... almost every one of my nails lifted/separated from the nail bed up to a certain point around the beginning of December. Painful, yes. Seemed to heal though (visible still yellow/blue/green, yuck) but this is good info since I have to deal with a little more chemo:
"For home care, patients with signs of infection in separated nails can soak their fingers or toes in a solution of white vinegar and water for 15 minutes every night. It kills the bacteria and dries the areas out." - http://www.webmd.com/ovarian-cancer/features/appearance-during-chemo?page=4

Well, thanks for journeying with me... time is starting to fly by as I realize we're moving home in 5 months. Wow.

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...

Monday thru Friday thoughts

A lovely friend who has visited me multiple times over the past 6 months came and gave me bone soup and the brand new magazine- Healthy Living Asia magazine! I'm a print published book reviewer now! So exciting. I'm working on reading two books for the next issue... I also was interviewed in the magazine about this cancer journey, honored to be part of a very fascinating/worthy publication. Friends in Hong Kong, look out for this magazine, you'll love it!
Here's a link to see the cover and read about how my wonderful friend created the magazine with a fantastic team of people! http://thehkhub.com/featured-posts/healthy-living-asia-magazine/

Monday: Tonight I was listening to my beautiful sister sing (lucky me getting to do so) and then I started listening to other music on iTunes. I came across one of my favorite singers- Sting (we share a birthday, folks!) and listened to Seven Days... loved the storytelling of the song. Thought it was appropriate to listen to this when I'm working my way through the next 6 weeks...
Appreciating wearing my own slippers. Day 5 done. 25 is a smaller number... Will see how I'm doing by the end of the week. Was told I shouldn't feel fatigued already. Hmm. Also appreciated learning that my skin was being spared this time since they are aiming for the internal area but I was still allowed to use the Radiagel if I wanted. I said I would for my own mental stability. Nervous about germs at work. My assistant was home today with a fever. Wash, wash, wash those hands... Hand sanitizer galore... Plus some essential oil drops to defend against germs will help too!

Tuesday - Enjoyed taking time for Yoga Nidra this afternoon right before treatment. So kind of a friend to come by and read me through it. I plan to use the audio on my iPhone other days when I feel I need it. Celebrating small successes tonight. First qi gong session where I didn't have any thought or need to sit down. Baby steps of chemo recovery- noted. Radiation day 6 done, appreciating the lack of side effects so far (beyond fatigue) and carefully monitoring myself. One really heartbreaking moment that is weighing on me is learning that a former Oregon Battle of the Books colleague has passed away after dealing with cancer treatments for a really long time... heartbroken for her family. She was an inspiring, touching, kind person who gave her all to anything she committed to. Really loved working with her... so I'll be celebrating her life in my mind for a while ahead...


Wednesday - Got thru the day. Lovely walk with a friend down to treatment. Got thru treatment. Noticed that it had been a week since I've had a bloody nose. Wow. That's another baby step recovery from chemo...

Thursday - Thanks to two friends for walking with me... Another day, enjoyed family time in the evening, especially snuggle time with the kiddo. He and I are really enjoying the novels we're in the middle of... Had another revelation... tried a new toothpaste this past week (Sensodyne) and FINALLY after 4 months I'm not hurting where I have the receding gums... Actually being able to bite into things on both sides of my mouth is a beautiful thing to experience again. Around lunchtime today my heart broke again for an Oregon friend who lost his husband after medical struggles... Sending love his way.

Friday - Treatment number 9 done! Woot. 21 is a smaller number. Thanks to my friend for giving me a ride to treatment... Amazing how much easier it is with someone helping me get to the appointment. Grateful to realize this time, the last two radiation rounds were a blur but this time I'm certain I'm more positive. Shall see how next week goes. Today was dragging along. I know other colleagues were tired today as well. Shall see. Temp, blood pressure, and O2 level checked multiple times this week. I really appreciate knowing each time that I'm "normal". I went to an evening support group at CancerLink. We had an interesting presentation about something called VirtueScope- really appreciated the special ideas and insightful comments shared. It is a card game with different virtues to focus on throughout the year. I just love the perspective. Enjoyed discussions and the cards/depth of virtue ideas... What amused me- people's view of me - card pulled? Resourceful (yes, that's what I've been told...) I'm Pure-Hearted as my foundation for the year and driving force... ok. Dignified was pulled for what supports my pure-hearted foundation... I also appreciated that I share Determined with others - here's the card's explanation of determined: "Single-minded, yet flexible, I keep on moving with love and purpose towards my destination." Interesting to read- was told to post with all the months labeled for the year with a focus each morning to look at the virtue. Then at the end of the year the outcome for me would be Tolerant "maturity to let go of expectations and love to keep on giving." Loved the positive attitudes of those in the group. Had a fascinating conversation with one person from Washington who was diagnosed 15 years ago (stage 4) and told he had 7-9 years to live but has lived well for 15- and we have the same oncologist, grateful for the chat. Was reassuring. VirtueScope link for an online version: http://vscope.memebot.com/

Now excuse me while I watch the finale of Parenthood (sob)... I still love that show... Will probably watch the finale a few times before letting go...

Thanks for journeying with me.

Four of Thirty Treatments Done

Supplements ready to be sorted.

Got thru the week. Can feel a little of the treatment effects so far but nothing painful. My oncologist warned me that I probably will be dealing with lack of appetite and acid reflux soon... shall see if that turns out to be the case. Staying positive as I can but also keenly aware of side effects. I started using Radiagel on my skin where I think the radiation is hitting- that was my mistake last time- forgetting to take care of my skin from the beginning.

Had to sort my supplements/medicine and couldn't believe it took 45 minutes. Glad to have them sorted for now. I take a lot of supplements and additionally Chinese herbal medicine...

I have another tattoo now- another little itty bitty dot on my left side so the radiation technicians can quickly know if I'm positioned properly. So I have a total of 3 tattoos now, sure they're dots but that's as much as I have the guts to deal with... :)
So I've been pretty fatigued this weekend, not sure if it is from being tired from work or side effect from radiation. I listened to my body though. Took naps, enjoyed family time, saw a movie, enjoyed date night time with my husband, and got to work on my blog for a little bit- happy to now be prepped for most of February. Gave myself permission to be brief on some posts...

Saw my oncologist on Saturday and he pulled yet another rabbit out of the hat. This time he told me that I might not get the other two chemo treatments right after radiation. He might wait until after I'm back from visiting the US for Spring Break... he kindly said that it would make it less of a burden while I'm on my trip... I just want to take care of what needs to be done. So... shall see. He said it depended on my reactions to radiation and if I didn't lose weight, timing, etc.

The visualization and breathing practice is helping me get thru radiation. Also my wonderful sister's special memory blog posts are picking me up each day and enjoying going back in time mentally with her...  https://startwithsparkles.wordpress.com/2015/01/23/piano/  Grateful for coworkers for giving me rides and walking with me to radiation... also grateful for those who have told me that they'll give me rides and walk with me- so kind... I certainly find that the help gets me to treatment. I also am thankful that when I walk into the clinic a little early I sometimes can get treatment a little sooner... Glad that I don't have to go on the weekends, that'd be abysmal. Thanks to all who have been commenting online, emailing me, etc... really is a lift.

Well... thanks for journeying with me... will likely be quiet this week unless something strikes me for writing...

Can appreciate wearing a hat.
Especially over wearing a wig. Tired of wigs.

Counting Day By Day

I can't believe I'm at this radiation thing again. (That goes through my head a LOT lately.)
Day 2 done. 28 more to go.
I realized I've forgotten so many things from the last two rounds of radiation. Here's what I've forgotten and now remember...
1. the gross brown flip flops I have to wear to the treatment room (not fond of the baby blue hospital outfit either)
2. the blue cloud lights above the CT Tomotherapy machine
3. the piped in music, usually flute, during the treatment
4. the only in Chinese tv screen packed with news in the waiting room
5. Blood pressure/temp check- weekly thing there

Yes. That's enough for now. I don't love this experience one iota but I'll deal.

Asking for help- always a hard thing for me but this time I talked with some of my lovely colleagues who have cars and asked for a ride to the hospital so that I don't have to exhaust myself every day... appreciated the ride today, made it much more positive to transition to radiation and then head home.

As for the treatment, I was relieved yesterday to read about the plan to spare my skin where I was treated previously. Don't know if this is too much to share but here's two documents they gave me a copy of- one lists the regions at risk during this radiation (oy) and the other is the radiation areas... I had (really) a conversation with the radiation as it went in me during both treatments and also my tumor. Told them about where things were going, how complications were unnecessary and the tumor can let go and depart... Similar to talking to the cancer cells and telling them to give up and die during my chemo treatments...

I know I'll just be tired presently during the next few weeks and then the burn will become apparent. I'm quite concerned with possible side effects, they weigh heavily- fistula, heart, lung damage, etc... Hopefully that won't even be an issue. I am happy that I can wear a hat into treatment each time. I did not feel comfortable and was cold when I initially got tests done...

The Stage 4b diagnosis has weighed in more lately for me. Not sure why beyond that conversation I had with my radiologist. Metastatic cancer isn't something that just gets cured or goes away. This is  something I plan defy the odds of and survive thriving, especially with alternative practices- working on food choices and mental health practices...

Presently I do feel a little more than a shadow of myself with energy fluctuating, barely any eyebrows or eyelashes, and that question every day of how long I'll wear the wig... or be willing to go to work with my head exposed. Hair is growing out a little bit but meh... I'll wait for a while since I'm quite cold without something on my head presently... bet when it starts getting hot/humid here in Hong Kong again I'll think differently.
Was lectured today, once again, about wearing a mask, especially at school since kids are germy... Hmm. My poor immune system with this radiation giving it a pounding...

I dealt with an upsetting financial situation and was happy to have it resolved the next day. I am grateful I know how to advocate.... but also thoroughly grateful to the people I called who had more power than me to speak up and settle things that needed settling. I am concerned that what I dealt with is common practice and other patients are taken advantage of as well... hope my speaking up might change practices and help others.

So... there's my reflection.
Shall quiet down for a little while... thanks for journeying with me.

Hoping and wishing with cranes and more

I love student friends... such beautiful people. I know I've touched many children through the years but they've been darn impacting and special to me as well.
Yesterday I received a very large, light box. It was decorated outside with loving messages and stickers. I opened it and was astounded. Cranes. 1000. Cranes. A wish created and given to me by former students and parents from my old school in Oregon. Wow. I am overwhelmed. (If the beautiful people who made this are reading- thank you, thank you, thank you.)
It is said that friends or loved ones fold 1000 paper cranes to wish a person recovery or a wish for a long life... I have read and taught about the beautiful story of Sadako and the Thousand Paper Cranes by Eleanor Coerr. This book has inspired so many people through the years.

I feel a wish granted, you know? When do you feel that blessed and lucky? I'm so touched. There have been people who have taken action and reached out with words, time, gifts, energy, and so much more since last August (and many before with my other two cancer battles) and I'm feeling darn lucky and loved. I even received beautiful threaded cranes before from parents at my present school...


A few years ago I featured a former student who is running a program called Cranes of Hope in Oregon on my Styling Librarian blog. She's so inspiring. She is still collecting cranes from the mail, through workshops and more and delivering the cranes to oncology centers around Portland and Beaverton and giving hope to children and adults going through cancer treatment. Patients pick up a crane each time they go for treatment. Here's my blog feature from 2013 - featured in June, I was diagnosed with cervical cancer that fall...:
http://thestylinglibrarian.com/2013/01/15/styling-librarian-features-cranes-of-hope/
I've thought about Niasha's mission, focus, and beautiful actions through the years and even just last week was thinking that I should be keeping my hands busy by making cranes I could send to her and even lead a crane making workshop with students during lunch in the library. Never considered being the recipient...  And then I receive this gorgeous box of cranes. What a gift.  **Please consider following Niasha on Facebook- Cranes of Hope and making cranes for her. It's a powerful mission she's accomplishing with many supporters... See links and such on the blog post above.

Today I brought my son to Sunday school and a former student (I helped there for first two years in Hong Kong but resigned this year since I had operations/chemo+ and no clue what I could handle) came over to me. "Debbie. I would like to help. I have the healing touch. Have you heard of Reiki?" (So my former students heard about this round, I kept things very quiet with the other two...) I said "That's very sweet, thank you. Yes I have heard of it..." For the whole community service she had her hands on my shoulders sharing her energy and hope with me. Beautiful. Touched. So sweet. And I did feel warmth, energy and was quite grateful. A 12 year old sharing her energy...

So. I'm ending the weekend a little tired after being out most of the day today visiting with friends, hanging out with my son, shopping at bookstores, launching a new book program for kids here in Hong Kong... but so invigorated and restored at the same time... Work/CT/MRI tomorrow. Will push through. I have a good audiobook to help me with the walks to the hospital along with a lovely friend who has offered to walk with me on some days... again, touched.

Thanks for journeying with me all...