Gettin' along

Buzzy smiling bees this time!

Well.
Been a over a week.
Doing better now.
Harsh lesson.
Don't be stubborn.
Don't be stoic.
If you are nauseaus and feeling shaky/weak for many days, something is wrong. Waiting just one more day to see if it goes away isn't wise at all.
I went after 8 days feeling terrible to the doctor.
She lectured me about simply calling and getting advice at least.
She told me that I needed to even email if I need help.
Sigh.
I know this.
I'm capable of asking for help.
Do I do so? Sometimes? NO. I'm darn stubborn.

So, anti-nausea medicine is a godsend when needed. As is cough medicine when needed.

I'm actually sleeping ok and stomach isn't terrible- it doesn't love anti-nausea meds but that's life.
Pain is actually ok overall. Sort of like arthritis pain in my chest and back. I can deal with it and if I'm hurting? Tylenol has simply been enough in the past days.

My dr. thinks I might have heartburn so we're trying a few tablespoons of apple cider vinegar at night to see if that will help me.

Also drinking warm happy lemon water with honey thru the day to help my throat out.

Chemo/Avastin went ok. Bruise from the needle looks hideous. Thank goodness it is long sleeve weather. Shall bring up what happened next time. Harumph. Haven't had a bruise like this in a long time and I honestly know exactly what went wrong.

My sweet snuggler

My dog is doing ok. She's gettin' along and snuggling with us like the beautiful soul she is.
My kiddo is settling into school ok overall. Grateful.
My husband is dealing with many job interviews. We have hope.
Birthdays are upon us. Husband's is first, which he really doesn't want to celebrate much.
Then mine next Friday. I'm all about saying HELL YEAH I'M STILL HERE AND LOVING LIFE!!! Here's to turning 42 without chemo or a hysterectomy on my birthday. Seriously. I'll take a peaceful, happy birthday. Enough already with the drama.

Feeling stronger on my end. I wrote my 1000th blog post on my Styling Librarian site. Feeling accomplished. Happy with what I do there.
Tired and know I am grateful for where I'm at...
Found a new massage therapist who specializes in cancer patients- pre/post/fighting, etc. She's lovely and likes essential oils, hooray.

New massage place

Appreciate the naturopathic dr. I found and the 20 mg. of Melatonin he prescribed me. Sleeping so much better than the past few years.
Enjoyed a new qi gong instructor and look forward to another class with her.

Grateful for my mom's support at chemo.
First time she could come with me.

My acupunturist said tonight, you're really getting your healthy ducks sorted out!
I also met with a Breast Friends support group. Lovely women. Good talk. Appreciated them telling me about the Dougie Center. http://www.dougy.org/  Not that we're dealing with death but they also deal with children who are affected by severe illnesses. Nice to know a resource, not that we find a need at the moment, but good to know it is there.

Still waiting on Foundation 1 testing on my tumor sample. I waited 3 weeks and then emailed since I was frustrated... they said they'd send when they knew anything.

Can't believe we've been home over 11 weeks and I'm not on anything I was hoping to be on. I'm happy I'm doing Mannatech and I have faith that it is helping heal my immune system, but man I'm annoyed with delays here in the US.

Hope everyone is gettin' along and finds those moments of joy all over their days!
Thanks for journeying with me...

Favorite book arrived from Hong Kong

Last Day of Chemo

Actually smiled.

I'm keeping faith.
Faith that this is really my last day of chemo.
Faith that the exhausting, expensive, emotionally draining experience over the past 10 months has successfully helped me rid cancer and extended my life. I'm continuing positive thoughts, deep breathing, qigong once or twice a day, and all the other things from oil pulling to essential oil treatment and I really do believe this is helping me. I've been dealing with pain in my side and more recently in my stomach and doing the deep breathing and acknowledging the pain has really helped me actually ease the pain.

Found out I have the stomach bug which helps me understand why I had stomach pain. It is difficult to distinguish sometimes what type of pains I'm dealing with. Good to have a solution, rice water to drink, and meds to take.

Happy moments and a feeling that an anvil has been lifted off my shoulders.... that's how I feel after finishing the chemo experience.

Hope this view is done in my life.

Author/Illustrator Debbie Ridpath Ohi made this for me.
As sad as I am to be wearing hats again,
I feel like this picture represents me.

A wonderful friend mentioned to me that some of my random shares in these posts have helped her out with her own medical needs. Hooray. That just makes my day. Touched by all wonderful people I'm keeping up with on here, Facebook, and other places...

Here's what has inspired me recently:
I LOVED the idea of these greeting cards created by a former cancer patient... this woman is an inspiration:
I'm grateful a friend sent this my way (thanks Candy!) and I agree, each person is different and it is really challenging to know what to say to someone who is dealing with cancer in their life.
Now, I do not refer to my illness as a journey, my journey is celebrating life itself every day. It has been interrupted slightly by this darn cancer but I am still celebrating what I appreciate, spending time with those I love and care about, pursuing my passions, and not letting go of my dreams...
http://www.npr.org/blogs/health/2015/05/07/404976537/are-you-sick-and-sick-of-hearing-everything-happens-for-a-reason?
Here's lovely card examples:

My beautiful qigong teacher sent me a link about gratefulness. 

Really appreciated this link and this song - 

Grateful  - A love song to the world: http://www.karmatube.org/videos.php?id=4460

I watched a video on Positive Psychology, enjoyed watching, most of what I know but I appreciated watching the research reinforcing it. (Shared by wonderful colleague at my school...)

I've added the mantra from this meditation link/video to my daily practice with my deep breathing. Really helpful reminder every time...

http://www.ishafoundation.org/Ishakriya/Learn-online

Moving ahead, taking care of myself... thanks for journeying with me...

Up Down Suckage

Today was one of those up/down days.
Up at 5am with a shaking dog- can't let her sleep on the bed when my husband is away!
Barely any sleep so a little more emotional and sensitive... all day.
Tomorrow is the big chemo-begins day. Been dreading it so much. Didn't help that I didn't make plans today. I made time to Skype with my parents which I enjoyed- had discussion and show and tell with the wig/hats/scarves, etc... but after that... had frustrating technology time. Wifi has been a little iffy. Will resolve sooner or later, I'm sure. Took a walk and wandered around areas of Causeway Bay which was good. Getting out of the apartment every day has always been goal one.
Received a letter from my oncologist reclassifying me as stage 4, not stage 3 which is quite upsetting for me mentally, takes me a little time to process those things... like having to have chemo every week vs. every 3 weeks... He didn't clarify this with my husband and I a week ago but I should have asked... gotta be your own advocate! So here is the official diagnosis: cancer of the cervix now with metastases to lung and mediastinal lymphatics, stage IV disease. Tomorrow- Avastin, taxol and carboplatin rounds begin. I'm going to be repeating these things tonight when I meditate and tomorrow during chemo as I remember: "I feel strengthened by the love of my friends and family." and "I can relax and let the chemotherapy work." and "Every treatment takes me another step closer towards health and recovery."
Missing wonderful husband but enjoyed Skyping with him this evening. Beautiful area at the top of a mountain in Vietnam. He pointed out to my son and I which mountains and peaks he'd be running up and down tomorrow. Still think it is wild but just so beautiful as well!
I've been getting a little down but trying to stay positive as much as I can... riding the waves day by day. Just knew today would be hard. Like pre-surgery and pre-radiation... the unknown is darn scary.
I think things are straightened out with friends, kiddo, etc. for future days. A few people will be leaned on... so many others have said, just ask, but honestly? It is hard to ask. To know to ask. To know that I need something. My best friend forced me to think about her visiting and when it would help. Forcing me think made me realize that I was quite nervous about when my husband and son are off on an adventure in Beijing in October. So, I asked if she could come then... I'm really looking forward to her visit and grateful as well. Lightens up my days and makes me hope for some good energy during treatments so that she can see fun areas of Hong Kong. Shall see. I read in Crazy Sexy Cancer in the advise for friends area that the friends that simply "do" something will be appreciated and I've noticed that those who have called and said "Ok, let's take a walk" and others that said "I'm visiting, here's a day I'm free" have really helped... Asking for anything is tremendously hard for me. I don't know why, just part of me that I'd prefer to help others vs. ask... but grateful to all who have written notes, sent messages, called, and visited... not complaining, just reflecting.
I'm excited because I signed up for a laughter yoga class like a friend recommended I go to- will be in a few weeks but will be nice to look forward to. I've been quite curious about it.
Yesterday I had my first acupuncture treatment with a new person. I appreciated his approach, reminded me of the person I went to in the US (quite a relief)... will see him next Thursday.
So...
Emotionally up, down and every which way.
I realized that this actually marks a year. A year with cancer. A year ago my world was flipped upside down. A year ago I was so relieved that the surgery went well and that I'd only have to have radiation. (surgery happened on my birthday last year, at least chemo isn't on my birthday this year... if things go well with treatment, my last one will be on my sister's birthday, shall want to dance together on Skype to celebrate...)  Little did I know that the cancer was bouncing around and into my lung and who knows where else... Can't believe I'm dealing with this all again with the financial stress, insurance worries, and more added to this mess. My husband thinks things will all work out but I admit, I'm so concerned.
I think cancer sucks majorly. It encompases too many of my thoughts. I love chatting with friends, reading, watching shows, and any distraction that takes me away from cancer a little bit. Still appreciating much humor and trying to surround myself with it as I go thru the days. I have Mrs. Doubtfire cued up to watch with my son tomorrow night, looking forward to laughing with him.
Tonight I'll return to a little more technology mess and then read some Crazy Sexy Cancer again, appreciating her attitude and tips. Probably finish off the night with some humor, starting a new book soon called People I want to Punch in the Throat by Jen Mann. Heard it is hilarious.

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.

Humor: the best things about getting a radical hysterectomy are...

So, I usually try to address stressful situations with a little humor. For example, I almost started crying when I was going into surgery. Everyone was so serious. Too many people were telling me to relax. It was upsetting. So when I was wheeled into the surgery area, I noticed the lighting looked like a dance hall. I told my surgeon, so I'm at a disco! He smiled and patted me on the shoulder. My anesthesiologist gave me the oddest look.

A day after surgery, a pastor came to check on me. She was quite concerned about how I was feeling. She was thrown when I explained how relieved and grateful I was. She didn't understand why I was happy. I explained about how my cancer was caught at an early stage, how I had a healthy child, how I had a healthy happy marriage and a good work environment to look forward to returning to... and she said to me "I could learn about happiness from you." I didn't see her again.

I've been trying to create lists in my head as I go through Tomotherapy, radiation, every day. As I mentioned, I try to distract myself a little in stressful situations. Tomotherapy is stressful to me. Go into a tube and get scanned and then have a bunch of rays shooting into me probably giving me many side effects and without knowledge of the success of the procedure, it is stressful. So, the other day, I started making lists for myself.

Here's one:

The best things about getting a radical hysterectomy are:

1. You appreciate the ability to pee. Brings you back to basics.

2. You're bedridden for weeks, reading is a beautiful distraction, so are tv shows!

3. No worries about getting pregnant.

4. No more pads to purchase.

5. No more birth control pills, saves money all the way around.

6. You get to meet new people and talk about your bowel movements and have your weight and blood pressure taken up to 5 times in a day.

7. You have a lovely bikini line scar.

8. You can be alone during recovery for long periods of time. How often are you alone with your thoughts?

9. You can let go a little and have experts tell you to eat well and check on you...

10. No exercise for quite a while. (Ok, this sucks, I miss yoga and Zumba and swing dancing and was really hoping to return to it this fall since my hip was feeling better...)

So... there's one way I deal with negative, turn to positive...

I love watching Parenthood

Simple and easy, I love watching Parenthood. A few years ago when Parenthood began, I thought "Oh boy, I just love some of the actors and actresses in this show, I hope the pacing can carry such a big ensemble!" It took a few episodes but I was quickly hooked.
I have a confession to make, I'm a huge tv addict. I am additionally a huge reader. Some friends don't see how the two can combine, some don't have a tv at their home... but I honestly find the two to provide a helpful balance in life. Often my brain doesn't actually want to input new books after working all day in a library reading aloud, looking at computer screens, and promoting literature. It just wants to decompress. I used to (for over 20 years) watch numerous soap operas. Since I moved to another country, I've finally completely given up that addiction... and now am instead enjoying tv shows.
So, Parenthood. Why do I love it so much? Because it reaches a variety of ages. It carries on numerous plots that I normally care about. It is thoughtful and touching. The first few times my husband walked into the room while I was watching the show he said "Oh, you're watching that show where they yell at each other". And I admit, there were numerous episodes where the characters get loud and almost talk over one another, but it was because they cared. Not just because they were obnoxious.
I miss the days when I had friends I could chatter with about tv shows. Gone is that time. So instead, I enjoy the show on my own and grow watching it. Last season one of the main characters, Kristina, was diagnosed with breast cancer. This show delivered how quick, upsetting, impacting, and devastating the news was to the immediate and extended family. Talk about people pulling together and supporting one another. Even those who had those tenative relationships, they supported one another beautifully. I sat and thought to myself, "I appreciate watching how this is developing even though it is heart wrenching. It is realistic and helps me sort out my feelings..."
So, I hate hospitals. I lost an uncle to cancer when I was young. A grandmother to a heart condition. Another grandmother to Alzheimer's. By the time I was 15, I had one grandparent left but numerous beautiful memories. I hate hospitals. I've barely ever visited friends when they had a baby, I've visited them after they're home from the hospital. I'll support others from a distance and visit after they're out of the hospital. I just hate hospitals. (More recently I have visited and supported friends in the hospital though...)
I've supported from afar family members who lived in the hospital as their child fought, and won, a bout with cancer. I've supported from afar a former student struggling with her cancer fight. I hate cancer.
Now, I've been in the hospital more frequently than I'd ever expected.
Parenthood helped me mentally prepare for this journey, even though it is a fictionalized account of life.
I blog quite a lot about life on another website. I decided that the website was quite public and this blog would be more personal. Since I'm accustomed to sharing my thoughts and feel at ease writing and find it to be a healthy outlet, I decided to share here vs. just keep a more private journal. So this is more for close family and friends who know about this journey I'm on...
So, this will be my brutally honest account of my little life journey that has been temporarily, I hope, interrupted.