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...

Ticking the days off

No more Wednesday treatments. Happy day. 4 left. The end is in sight. Not thrilled about any treatment. But I'm making the lab technicians laugh as I walk in. Today I let them know "today is my last Wednesday"... One of my favorite technicians always says as she leaves me, "Won't be long." If she's not there that day I say it to myself. She's seen me through my radiation treatment for the cervical cancer, breast cancer, and now lymph nodes... kind woman. Another one used to say to me "stay still" during the breast cancer treatment. She doesn't say that anymore. I do not BUDGE or even breath more than shallow breaths once they're done writing on me, adjusting me, rolling me, positioning me just right. I'm honestly freaked out about moving a smidge at all because I don't want that radiation going anywhere wrong. Bad enough where it hits now.

Pretty drained/tired but still enjoying work. Don't feel like I'm overdoing things, just is annoying to get up in the mornings.... but I've never been a morning person. The end of the work week is tougher for me, more talking with some classes. Adjusted my lessons with some groups this week so that I don't talk as much and am LOVING my decision. Nice to have students back to independently exploring literature. Will add back technology projects and research soon... less talk from me... I did finish reading aloud one of my favorite books today with my son's class- read Love that Dog by Sharon Creech to them. I never tire of this book. I have most of it memorized. I adored the conversations once I was done about how the students felt about the book, cared about the character, how they enjoyed the entries in the book, how they followed the storyline... (they just finished an inquiry unit on the arts, connects to novels in verse perfectly)...  My favorite moment was chatting with one group of kids about how they loved Sharon Creech's book Heartbeat which they read for Battle of the Books this year and another group of kids came and told me they loved Walk Two Moons and then another group begged me to get Hate that Cat- the sequel to Love that Dog for the library (shocked I didn't buy it already)... Oh to love an author and have a little money left in my book budget to fulfill kids' wishes!
I received the most beautiful, supportive letter from Sharon about a month ago that really touched my heart... she's such a wonderful, thoughtful person. Have opened/read the letter many times since receiving it. It is like looking at a piece of art, lifts my spirits. Love that I can connect with her and other fantastic authors online... such a lucky person I am...

Enjoyed actually getting to treatment early today because of a lovely car ride from a friend and immediately going to treatment early and heading home at a decent time. Especially appreciated the bonus of meeting up with my kiddo on the minibus on the way home. Fun to catch up with him at the end of the school day. He was thrilled.

My good friend sent me this post I found quite helpful for thinking about future scans and stopping myself from worrying... She always sends the best advice:
10 Tips for Coping with Scanxiety:
http://www.curetoday.com/community/tori-tomalia/2015/02/10-tips-for-coping-with-scanxiety?utm_source=Informz&utm_medium=Cure+Today&utm_campaign=CURExtra+email+2-18-15

This blog post upset and inspired me simultaneously: "As I lay dying":
http://www.latimes.com/opinion/op-ed/la-oe-becklund-breast-cancer-komen-20150222-story.html#page=1

Two more treatments this week, two more work days... Next week, last two treatments and then some recovery...

Enjoying each day for the gift it is, sometimes zoning out a little more but pacing myself best I can.
Thanks for journeying all...

Ok Days Holiday Break

Grateful for time at home, rest time, nap time.
Got thru three days of treatment, 8 to go. One coming this Saturday which is odd but there's adaptation for Chinese New Year.
Looking forward to getting back into routines next week. Five treatment days in a row and then two more the following week.
Saw my oncologist today. He's reassuring. Wasn't as impressed with my weight gain as I was excited... but of course I lost 4 pounds 1 1/2 weeks before and only gained back one. I told him "I worked hard to gain that pound!"
He said I'm doing remarkably well. Happy with my blood tests, kidney function and more. A relief.
The week of the last two radiation treatments I have to get a lung x-ray to see if my lungs were damaged by the treatment, oh boy. Then I get a "break" from treatments for around 3 weeks. Then I have to get a PET scan again to get another baseline check... for some reason I didn't expect to need to have another PET scan til June, sigh. Then based on checks I'll find out about the last two rounds of chemo/time plan. Might be right after we return from Bali. Will see.
I'm working hard to stay positive and hopeful. Still talking to the tumor. Asking it to die, shrink, quit growing, and more...
I'm tired of the pain I've begun to feel in my back, pretty sure from radiation. It was weird to move my tongue and feel pain for the first time. It doesn't hurt to swallow. Just sucks to cough.
Feeling tired but napping is helpful. Kiddo is patient with me which is good. Trying to make special time with him outside of our evening reading time.
Certainly feels good to leave the apartment without something covering my head. A relief.
Had fun visiting with friends yesterday at an anniversary party but I realized how many students were at this get together... more than I expected. One student looked at me, giggled and went and whispered to her other little friends. Another student just looked at me with huge wide eyes and I said "I know, my hair is different, right?" She said "Yeah." Kids will adapt. I certainly have.
Grateful that my husband is getting some things sorted for us... especially planning out our Bali trip. Fun to make plans together. Good to have things to look forward to.

Wishing readers well. Many thanks for journeying with me.

Enjoyed looking at these and sniffing the delicious smell.
Not even tempted to eat one bite anymore, feel like I've come so far.
Happy Anniversary to two good caring friends! :)

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.

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.

Roller coaster day

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

No Sat Chemo Wow! Getting thru the week

So.
This week.
I was ambitious about.
Mon-Thurs - some activity every evening.
I have my doubts.
Shall see.
I'm not feeling fantastic.
I'm not feeling enthusiastic.
In fact... I feel a little crappy.
My right ear feels a little full, like my tube is full of liquid.
I have a headache.
I also have a shoulder ache.
I now understand (once again) what fellow cancer people feel when having pain and wondering if it could be cancer spreading.
I try to be positive.
Honest.
Some days just...

So... that was Monday night.
Now it is Wednesday. Ear is still iffy, headache eased up Tuesday, shoulder ache eased up as well.
I was grumpy for a while today because I was feeling pressure to hear from my doctor to discuss some insurance issues when I tried to explain them to a kind receptionist who didn't completely understand me... but it turns out that she really did understand and my oncologist really helped us with one huge worry and made it much less worrisome with some paperwork adjustments I suggested. (Phew.) I'm so grateful... now to see if things get sorted out properly... nothing is ever guaranteed...

Now... Friday afternoon...
This week was a blur with four evening activities. First one- qi gong- fantastic as always. Second one - librarians meeting - good to catch up and see colleagues, wonderful people plus learned about some resources that were new-to-me. Third one was a CanSurvive cancer support group meeting with a presentor talking about foot massage/reflexology- fascinating, glad I went. Fourth one was my critique writing group- always grateful for time together and feedback on my writing... keeps me focused through the month on editing and writing more ideas down.

Today I finished off the projects at work that I'm pleased with- good to have progress. Then I took a walk down to the hospital after school and walked into the radiation section, reintroduced myself, and asked what was going on with appointments and treatment plans. They told me that I was scheduled for Monday. Asked about when and was asked to wait... waited for 20 minutes and now know Mon. afternoon I have not only a lovely CT scan but also a fantastic MRI scan... blech. Has to happen with both to prepare for radiation treatment. Hoping I can have afternoon treatments but know that depends on availability, etc. Shall see...

My acupuncturist told me about this cream that should help with radiation burns:
https://springwind.com/catalog/burn-cream

Hooray for the weekend. So happy and grateful to have my first official Saturday free of chemo treatment. Sure, radiation is coming up but it feels good to see a light at the end of this tunnel.
Need some resting time. Catching up with family time.
Thanks for journeying with me.

Ickiest my nails have ever been: green, blue, yellow dead but they are growing out...
I couldn't stop messing with them with the polish off, so now I keep applying blue polish.
Discovered with a friend Innisfree nail polish that doesn't stink terribly, feels slightly better/healthier to use it.
Darn chemo, really got me this past month with my eyebrows and eyelashes falling out pretty drastically (I'm getting good at drawing in my eyebrows I think) and the tips of fingers and toes tingling/pain- besides the dying nails...

Radiation Plans plus Pacing

I love being back at school. I do not love the morning wake up. It is wonderful to see students again, colleagues, and have the chance to tackle projects... It is fun to teach and my colleages haven't pushed with expectations (thank goodness)- I'm teaching classes and appreciating a little work time here and there to do cataloging and projects.

We made a big decision that I shared on my other blog but not here yet... we are going to move back to Oregon in July. This is a very positive decision even though we are going to miss so many friends, connections, life here in Hong Kong... We know that without this third cancer diagnosis we'd be in a different place... but we're happy and excited about the changes, especially my son.

Now that I know we're headed home, I'm addressing all the projects around the library that have been put off. I want there to be a smooth transition with my replacement stepping in to that gorgeous setting without anything piled up...

Today my husband and I went to see the very negative radiologist. My husband has actually forgotten about meeting him before, I think this is because neither of us want to remember conversations with him, the most blunt person I've ever experienced... and I'm pretty darn blunt. I disliked all my past appointments with him but one thing is for sure, once I met with him, I felt confident that avoiding the local hospital was a good idea. This round of radiation is risky and worrisome and I do not want to risk my life in any way. The local hospital oncologist told my husband and I that he didn't think the radiologists would even be willing to radiate the area that needs treatment...

So. Radiation is next. This Saturday is my final (for now- 2 later) chemo treatment, just one drug, getting thru them. Not pushing myself. No fainting, a few moments of tiredness where I realized I needed to slow down but overall, getting thru work and home life. I'm taking advantage of elevators at work. Not walking the stairs as much. Walking up stairs tires me out more than anything else.
Radiation plan- much more money than past two experiences. This time the radiologist wants to go for six weeks of treatment. 30 LONG days...
Here's what he shared:
I have a connective tissue disorder, rheumatoid arthritis, that has created issues in the past. The first round of radiation for cervical cancer had to be ended early because of this. The second round for breast cancer wasn't shortened at all though... He's concerned with my ability to successfully get through this round since it is 6 weeks long, 5 days a week... and there could be "nasty reaction" to radiation since it could compromise my heart, lungs, esophagus, trachea, spinal cord... there could be significant side effects, especially my lungs since the radiation will be going through it. The area I'll have radiated is called the mediastinum... He said with the 6 weeks it would be 5400 radiation dose, normally the 6 weeks is a 6000 radiation dose but because of my connective tissue disorder he wants to be careful and do less.
Side effects he listed at this time are: fatigue, possible damage to important areas of body like heart and lungs, appetite decrease... I can work throughout the treatment though... the hospital is down the street from my school. For the last two rounds I walked for 14 minutes (timed it to a "t") checked in, had radiation, walked up to the other area outside the hospital where either I'd take a bus home - drops me off right near our apartment- or take a taxi if there isn't a terribly long line... Shall see how I do for this round.

My oncologist wanted to possibly have more radiated beyond the tumor which surprised me quite a bit. (supraclavicular regions) It was something new. The radiologist didn't want to do this due to my connective tissue disorder, I'll be checking with my oncologist when I see him on Saturday about this. It would be radiating my neck area on both sides... Hmm.

Here's some of the quotes from the radiologist I took down:
"We are trying to reduce the chance of cancer spreading.... Although, the chance of it spreading in your current diagnosis is high.... The objective of treatment is to control cancer and maintain your quality of life.... Chemo isn't curative for cervical cancer.... There is no cure for your stage of cancer..."

Gee thanks, thrilled to meet with you. Great for my attitude... and my husband's... not. Wasn't looking for a cure, moved beyond that word a long while ago...

I know my husband and I are both focused on the tumor at hand. Reducing it, getting rid of it. I know there are cancer cells bouncing around in my body. Obviously. They showed up in my lung for goodness sake. I also know that I'm trying my best to stay positive and have healthy practices with preventative practices as well...
Yup.
That's what I have to share today.

Enjoying the week at work... tired... glad I had qi gong last night with friends, learned a few new exercises that will be useful. Think my instructor is fantastic.
Thanks for keeping up on the journey with me, know I've been a little more quiet but honestly embracing my time at work and treasuring my time at home as well. Balancing in writing and journaling when I feel like doing so...

Results plus Thoughts Randomly Coming

The PET scan results were in, never thought another round of chemotherapy could be promising results but they are. They certainly are. I worked to redirect my thoughts when they went negative, worried about random pains in my body and redirected to positive every time I caught myself. It is challenging but I do think the more positive I can be, the better. Speaking of which, sometimes being around my oncologist, who I thoroughly respect, is not so positive, at all. Here's a few things that have come from him recently and in the past:
Here's another list-  Top 5 Things I Don't Want to Hear From My Oncologist:
5.  "There is a real chance the cancer could come back elsewhere, this is a long shot for being curative." - December, 2014
4. "After radiation, we will need to look at long term medication." - December, 2014
3. "There's likely to only be a 40 % of chance of success with chemotherapy." - September, 2014
2. "The results are not good, look your lymph nodes are lit up." - August, 2014
1. "You Have Cancer" - September, 2013

So, there's still a tumor on my lymph nodes in my chest near my heart. It is getting smaller. My oncologist insists that it has shrunk due to the chemotherapy, not just when the lung specialist removed a portion of it during my September surgery. There are no other areas in my body lighting up presently from the PET scan which is a good thing, a very good thing. Damn the lymph nodes, but I'm here. I have to have four more chemo treatments, two before the holiday and two after the holiday. (But I get to go have fun with family and friends and turn off the cancer mindset for a little while, hallelujah.) But I will get those chemo treatments done and then have a few weeks break and begin radiation treatment to hit those lymph nodes.

Things my oncologist said to me over the course of this year + were promising for the first two cancers, but there was a major shift when I had the metastatic diagnosis. That hasn't been so wonderful. I'm going to stay positive. My husband is not thrilled that I still have so much tumor lighting up on my lymph nodes, I agree with him, it sucks. It is disappointing. Damn cancer. But there is progress, slow but there. And I'll take progress. I'll also be happy to be done with chemo in 5 more weeks. Today's treatment was just fine. Normal one dose day with a visit and lunch from a special close friend. Was grateful. I also had many hours on my own with the kiddo tonight which I adored. We had fun planning out our evening and spending time together. Hooray for my husband getting a little time away from home to do things.

So the before is below in blue and the after is above in blue. Must it be blue?
My favorite color? Meh. You can see measuring info and such...
So, lymph node tumor right next to my heart, shrinking. I get a whole fancy binder with each PET scan.
Not the kind of book gift I want, but I'm collecting them nonetheless.
This is just one page of many many many analyzing my body scan. 

Random Thought Time:
Oh the vanity... Fully admit, working to stay positive about life... but sometimes vanity rolls thru a little.
How many of you have created odd situations in your mind and then acted them out? I've been concerned about my lack of hair and using my passport. Should I wear a wig on the airplane so that I don't need to worry about people questioning me? Would people question me?
I've thought about this to the point that I am imagining being up at the passport/visa entrance area and am asked to take off my head covering... drama drama drama. Who cares what I look like? I guess I do since I'm thinking about it. After thinking about it for a while, I chuckled to myself. I live in Asia. There are many many people who wear head coverings here. I don't believe that my little head covering is going to be an issue.
*Missing my hair. Looking at my scalp and sighing that it will be a while before hair recovers from the chemo and begins to grow in. The little bits here and there that didn't fall out have randomly started growing out, it is odd, a little curly. Shall see...

Burned my hand today a little bit in the afternoon, spilled hot soup on it. I used cold water and then my helper brought me a miracle medicine, Oronine Ointment, that helped after two applications. So relieved. Really annoyed by my klutzy actions lately. Knew the bowl was too hot so of course I picked it up a second time. Sigh. Slow down Debbie.

Actually had a pretty darn unpleasant bloody nose two days ago, will be glad to be free of medicine that has that side effect.... also noticed that one of my fingernails is now looking really unhealthy with brown above the white of the nail. Hmm. Some have mentioned that they lost their nails because of chemo side effects. Hmm. Shall see. Husband told me to put nail polish on it so that I don't worry... not exactly helpful but I get what he's saying.
I'm not so thrilled with my skin breakout on my face either. It is certainly different than the others I've dealt with in the past. My oncologist said that it is a normal cumulative effect of chemotherapy, didn't recommend anything. The nurse I talked with told me that it is worse for so many others... she shared with me a few sad stories about other patients that I really could have lived without hearing... So I suppose I'm lucky, sort of.
Oh vanity...

Read a study from a friend in the US who has a family member also dealing with cancer, found the article hopeful, will share with my oncologist next week. About new treatments helping metastatic cancer patients:
http://www.medpagetoday.com/MeetingCoverage/AACR/32048
Had enough to ask my oncologist this week, here was my list:
-PET scan results
-Nail
-Nose
-Face breakout
-Muscle pull (pulled in yoga yesterday, odd, feeling a little better though)
-Nausea medicine
-Plan for radiation treatment scheduling

He seems to have a limit after a certain amount of minutes talking together, I respect his focus and concentration as we meet and just keep writing my lists. He doesn't get annoyed with my questions

Thanks for journeying as always...  Grateful for progress this time... Bearing up for 4 more doses.

Possibly 3? Am I crazy?

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

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

Again I got the yes, but.

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

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

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

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

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.

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.