Whack a Mole, Results Not Terrific

YESTERDAY:
I am impatient.
It has been days.
I've been distracting myself.
Getting rid of stuff. Packing. Sorting. Selling items.
But I just want the clear scan results now.
Sigh.
I told myself today, at this time tomorrow, you'll know.
Didn't help my mind wandering.
There's so many what if's that have to be redirected at this time to the positive mantras.
Deep breath.
Calm thoughts.

Doesn't help that my wonderful husband is gone in the Philippines this week. Miss him tremendously.
There were complications while he was there and I'll be glad to simply get him home in one piece...

Results are tomorrow.
Waiting.
Hair is still growing in.
Eyebrows and eyelashes as well.
Stamina ebbs and flows. Mostly I'm overwhelmed by heat and humidity... Exhausts me as it does any normal person.

TODAY:
Thank you for the prayers, good wishes, and hope.
Received good news about work for me... will share once more official.
Grateful my husband is home in mostly one piece.
He was able to be there during the results appointment.
Well. The radiation and chemo cleared up the two worrisome areas- lung clear, lymph node near heart clear. (Clean and clear is pleasant to hear...)

Unfortunately, I have two new tumor sites.
That means two new cancer tumor areas.
One in chest cavity behind my lung by my back- on another lymph node.
One in my right adrenal gland beneath my liver.

My oncologist said that in Oregon he wouldn't recommend standard chemo since I had such a hard time the last two treatments. He thinks I might qualify for new therapy trials and would highly recommend I look into immunotherapy.

We asked if we stayed in Hong Kong what my oncologist would plan, he said radiation to the two new tumor areas to control growth but not to cure it.

So. Next? Going to see my new oncologist in Oregon the week after we move home. Have records, transfer papers and more...

Presently? In shock. Disappointed. Not too surprised. Sucks though. Cancer sucks. Feeling strong, just a little pain in my back (found out that's pretty much where one of the new tumors is located.) Wish it were different results.

My husband says that stage 4 cancer is like playing whack-a-mole. I agree.

Thanks as always for journeying with me... have a feeling this journaling is going to be continuing for quite some time...

Weekend time

This morning was hard and then good.
I got to CancerLink and enjoyed a little yoga, picked up my ticket for their "Celebration of Life" at some big stadium tomorrow afternoon. Shall see if I have energy to go. Bringing husband and kiddo along if we do go. Had to duck out of yoga early, much to my chagrin as I would have enjoyed catching up with a few friends after class. Same thing will happen next week, sigh.
I had an appointment with my oncologist. That was hard. By the time I got to the appointment I felt like... I was the walking dead. Almost as weak as when I was leaving the hospital after the operation. Didn't enjoy the MTR ride over to the clinic, an elderly woman pushed me during entry (rarely do I get pushed) and I got a seat anyways. Letting go.
At the clinic I got my weekly blood draw but it hurt more. My poor veins are darn tired of needles. And much more sensitive after all these months of chemo, etc. Funny how that is but I was warned. I found out that I was running a low-grade fever and had lost 5 pounds in one week. 5 pounds. So many of my friends struggle and worry about weight, that is, getting weight off. But to lose 5 pounds in one week made me want to weep. I've worked so hard to put that weight on. I was at a healthy weight of 127 pounds (not anywhere near what I used to be) and I was proud of that weight. I don't like going below 130 to be honest because I bruise like crazy when I don't have any cushion on me... and I've seen more bruises this week. Sigh. Now hovering below 122...
My oncologist suggested putting me on an IV drip right then. I told him I wanted to go eat a burger and spend time with my friend. He made me promise to drink more yucky sports drinks to boost my electrolites (I tolerate Pocari Sweat here, too much sugar but at least I know it helps) and drink a lot of water. He's also concerned because my nosebleeds have started again, the chemo makes me have nosebleeds so it isn't much of a surprise to me... Just dealing...
I talked with my oncologist about the looming PET scan. I told him I was concerned about the rush to have one. He told me he just wants to get me strong and recovered from chemo at the moment and we'll talk about the PET scan in June. Ok. Sounds good. I think. I told him I'd prefer to avoid the PET scan until school is over. What's the point really of finding out before? I have stayed positive about things but honestly, I can't even consider any treatments/operations, etc before we're back in the states. I want his opinion and certainly plan to have the scan before we leave but... meh. Not in a rush... peace of mind? I'm better putting it off and getting stronger during June. Shall see what he says once I'm feeling better. He's very respectful but also isn't hesistant about speaking his mind about what he knows is best for my care.
I'm to watch my fever. If it goes up or if other things come up, I'm to go on antibiotics twice a day. I already have the prescription. Shall see. Fever isn't down yet. I checked.
I was able to meet up with one of my favorite people here in Hong Kong and have lunch and then book shop together. Spending time with my friend Tanja is always a "picker-upper" for me. We visited a book sale and I got 25% off a few books for school, woot. Wasn't too impressed with what they marked down 80% but was happy to have the energy to hang out and book chat.
Looking forward to work next week. Only 4 days of school and then a long weekend. My husband is excited because he's going to scuba dive in the Philippines. I'm happy for him. Looking forward to spending time with my kiddo too, just the two of us...
This afternoon I read a website that had some really good advice for people who are dealing with metastatic cancer like me. The American Cancer Society article is called "When Cancer Doesn't Go Away". Trust me, I can hope for it to go away but am honestly just realistic as well.
http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away
Appreciated the advice and thoughts.
Damn cancer.
Going to read and relax and drink many fluids.
Thanks for journeying all.

Many Hmmms but happy moments too

Happy day, visited favorite used bookstore yesterday.
Called- Flow Books- learned that it is closing/moving soon.
Hong Kong friends, get over there now!
Such a nice owner, hope he finds a new place to move to!
One of my new hats with an old scarf and a cute blue clip...
Thanks Mom!

It is incredible what a few days extra of recovery provide a body. Unfortunately, my stamina isn't completely there... I can still last for 3-4 hours but find myself getting pretty tired after that if I'm walking around. I haven't hit 10,000 steps again, my friend Sheli has each day though... we're wandering around Hong Kong between appointments and such.
Today provided us with a relaxed morning and an adventure out to Central for me to finally take the Satyananda yoga class that is provided through CancerLink. I really appreciated every minute of the class. The instructor was patient, knowledgeable, had a good sense of humor and introduced the yoga style in an easy fashion. I found that my range of motion isn't what it used to be. Five scars on my right side certainly have impacted me but I've healed a lot in the past months, the pain has resided so much. Giving myself time to heal and being patient, as much as I can...
I've talked with doctors and more than one mentioned that chemotherapy brings back up radiation treatment reactions, yep. At least it doesn't burn but the area where I had radiation in May certainly isn't happy skin. The scalp isn't quite healed but I've completed the antibiotics. #6 of 12 chemo treatments is tomorrow. It is a one drug day... not fun but quicker.
Saw my acupuncturist yesterday, appreciate his perspective... he lectured me on how to cook the eggs I'm eating and encouraged me to eat two a day. He also has been helping me focus on letting go of worries, etc during treatment, that's pretty wonderful and helpful...
Was chatting with Sheli today about my hair as I've noticed it growing out a tiny bit. Am wondering how much will be there by #12, hair still is falling out constantly but not sure... Also curious to see the state of my eyebrows and eyelashes by then, my oncologist thinks that they won't fall out. Hmm. Taking it day by day.
Sorted out my daily supplements and medicine today and there are a lot. I chatted with Sheli about how it would be nice to figure out how to cut back on them somehow... but I just keep adding. Hmm.
Was bit 8 times the other day by mosquitoes- even though I did put on bug repellant, hmm. Glaring at insects doesn't really work folks... but I have noticed that my coconut oil/slippery elm bark mix really does help my skin calm down and mostly heal! Happy that I tried it out... not quite perfect but darn lot better than it could be!

*Received the most thoughtful video created and made by my former school's staff from Ridgewood Elementary. So, so touched. At first I couldn't believe they did it all for me... but they did. They created a lip-sync sing along video with different grade level teams competing against one another... for me to choose a winner (impossible) to show their love and make me laugh... and laugh (and cry) I did. So touched. So grateful. I want to share it here but it is unlisted and I know there could be some copyright issues and I want to keep rewatching it in the future! Thank you to my Ridgewood friends... so grateful, feeling loved on this end...

Thanks for keeping up with the journey... really appreciate all the support through this time... can't believe I'm already on week 6 of chemo...

Preempting Hair Changes

Part-way thru the cut...

Grateful that I talked to experts, a few survivor friends, and read blogs and advice sites for people dealing with chemotherapy and side effects.
I've mentioned a few times that I've read about how patients who have longer hair are advised to get it cut short to help with the transition to losing hair/going bald...
Decided to do this before my first chemotherapy appointment. That appointment is this Saturday- 5 days away.
Sophie, at Tony and Guy in Central is one of the best hair stylists I've ever experienced. (And I'm really picky as a curly haired person.) Really appreciate how she handled today- I know that it wasn't just hard for me to get the hair cut... she's been invested in my hair- helping it grow, getting it to a style both of us agreed worked well for me, and now had to go thru cutting it. This was after last year when she flat out told me she'd never cut my hair short in a random conversation we were having...
So, I nervously asked Sophie a bit ago if she'd be willing to help me with this not-so-wonderful situation... Of course she said yes... She's one of those that is comforting and ridiculously talented simultaneously. I also asked my friend Amy if she'd come distract and take pictures... she's a wonderful friend that staged an intervention with another dear friend the first day I stepped foot in a community center here in Hong Kong and helped welcome me and sorted me out with doctors, hair stylists (introduced me to Sophie), and more... I appreciate her friendship tremendously. Amy came prepared with funny anecdotes, interesting things to chat about, and a talent for photographing the whole thing...
Now it is done.
Documented.
Moving on.
I think it is a lovely haircut. Not what I would have ever chosen in a different situation...
(damn cancer)
Sophie is on call for when I need to officially shave it off... as is Amy.

Husband was wonderful as always, he first said, "Well, you have your hair pulled back so often this wasn't too much different until you turn around. Almost forgot for a second." - he likes it...

Kiddo was a little tumultuous.... Yesterday I asked him to decide between a few short curly haired pictures... he chose this one:

A friend recommended that I ask him to help with the decision, appreciated the suggestion. I loved the show Felicity and was surprised by the haircut way back then on Keri Russell... which isn't appreciated by many out there but helped me look at short curly hair as a possibility.

When my sweet kiddo got home from school, we caught up and this was his reaction to the hair cut: First not really noticing, then noticing, then saying he liked it, then later saying it scared him, then tearing up and saying he never wanted me to lose my curls and long hair, then voicing concerns about me eventually going bald, then at the end of storytime together saying that he thought it was pretty and goofing around together. I knew it would be up and down and up and down for him. Love my little sensitive guy.

Somewhat of a mohawk style for a friend who suggested it... partway thru cut.
(Hardest part was actually seeing the top part of my hair cut short...)

Facebook friends are incredibly supportive... beautiful people that they are. Many told me the cut brought out my eyes, made my cheek bones more pronounced, and that I should get some fun dangly earrings. Many suggested I color my hair an outrageous color, funny idea but heck no... going to put enough poison in my body with this chemotherapy, no need to put it on my scalp as well. :)

So.
Got thru the day.
(It helped that earlier in the day I was able to go to school to see an absolutely fantastic author visit for my students with Candy Gourlay- LOVE HER BOOKS- Shine and Tall Story- and also had a long wonderful Skype visit with my best friend in Alaska....)
Positive moments keep getting me thru.

*Amy noticed that I was having a few "wow" moments right after the cut and that she expected that I'd have some to share on the blog, yup.... I do like my lists.
Here's a few things I randomly thought of since the cut:

1. I need other things to fidget with now that my hair isn't there to mess with...
2. It is fun to touch short hair.
3. When it rains, you can feel raindrops when they hit your head.
4. My hair will actually dry in less than an hour now vs. taking all day to dry.
5. I can feel every breeze now...
6. Missing the cushion of hair when leaning back, sigh.
7. Will take adjusting for how much hair product to use.
8. Washing my hair is super fast now.
9. Short hair is stinking easy... No need to think about how to style it. Just wash and whoop, you're done!
10. Curls will find their way. Right now every hair on my head is saying, "Oh My Goodness WHAT Happened? I'm FREE!" and they are having a little fun adjusting... curious to see how humidity here in Hong Kong will effect the hair...
I'll watch the changes over the next few weeks until things change with expected chemo side effects kicking in...

So ends my thoughts for today... Glad I have time to reflect. Thanks all for keeping up with me on this....

Skin and Hair Researching Tips Plus Chemo Details

Thank you to those who shared humor videos and websites with me...
I've been collecting suggestions on this blog page:
http://lifesjourneyinterrupted.blogspot.hk/p/blog-page.html
I also decided it would be good to collect my healthy practice videos as well on a page, here it is:
http://lifesjourneyinterrupted.blogspot.hk/p/healthy-practice-videos-to-visit.html

Hair:
So, one tip I read recently (and was also told by a helpful friend) was to cut my hair short so that when I do have hair loss, it won't be as much of a shock.
I have permission to pop into my school on Monday when there's an author visit. I'm excited to see coworkers and the author... and of course students... for a few minutes.
After the visit, in the afternoon, I'm going to see my favorite hairstylist who will do her best to give me a good short haircut. Haven't had it short/pixie like pretty much since I was 12. At that time, that style was a disaster for me. I love having long hair... So, my friend will come along and distract/support as well...

Sweet boy:
Had the chat with my kiddo tonight. Broke the news that chemotherapy was going to start next Saturday. He just pointed at his head and said, "that's the one where you might lose your hair, right?"
I explained that I would likely lose my hair, yes. Saw tears starting to pop out of his eyes and we quickly explained about getting a shorter haircut on Monday and how I'll still be me, just less hair... He calmed down and joked with us about being bald and we shifted to a conversation about scars which was quite entertaining... Ended with us talking about how I fell for my husband at a swing dance lesson and how he caught my eye by reading a book during the dance break times. My husband thinks that scars are attractive and draw women in with the curiosity factor... I told the kiddo that it wasn't necessary to get scars to be attractive. Amusing to shift to that topic, I was grateful... I know this is just the beginning and that he's going to have many ups and downs as he watches my reactions to treatment. He's been the cheering section so far with my lung recovery/breathing practice.

Chemotherapy Details:
I read up on side effects of the chemo drugs that will be pushed into my body. Many listed skin changes, lip and mouth ulcers, and many other drastic side effects. So... to the internet I go to find out more.
I know some people might actually want to know the combo of drugs that will be pumped into my body so... Here they are:
I will have chemo for 12 total weeks as long as things are going ok.
It will occur in 4 week rounds, so 3 rounds total.

Anzatax (taxal) will be every week for 4 weeks:
http://www.hospira.com.au/english/_docs/Anzatax/Paclitaxel%20(Anzatax)%20cmi.pdf

Carboplatin - once only every 4 weeks:
http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx#.VBFyEWQsIcs

Avastin - the antiangiogenic- once the first and third week:

http://www.avastin.com/patient/treatment/possible-side-effects?close-all=true

Skin changes and more, investigated:
I found out a few things...
First off, there is a site called Look Good Feel Better, interesting:
http://lookgoodfeelbetter.org/
Appreciate their videos and tips for makeup- losing eyebrows isn't as worrisome:
http://lookgoodfeelbetter.org/beauty-guide/makeup-step-by-step

There are many good tips for chemo treatments...
25 tips here: http://cancer.ucsd.edu/coping/resources-education/Pages/patient-tips.aspx

Skin tips: http://news.cancerconnect.com/skin-care-tips-for-cancer-patients/

Some interesting skincare tips...
http://thechalkboardmag.com/12-skincare-tips-for-cancer-patients-and-survivors
http://www.bodyandsoul.com.au/beauty/body/skincare+for+cancer+patients,24441
http://www.webmd.com/ovarian-cancer/features/appearance-during-chemo

Concerned about mouth sores...
http://chemocare.com/chemotherapy/side-effects/mouth-sores-due-to-chemotherapy.aspx#.VBJu92QsIcs

More ideas for lip treatment:
http://www.medscape.com/viewarticle/709336

Video on effects of chemotherapy on skin:
http://www.mskcc.org/videos/effects-radiation-therapy-skin

So, yup, learning a little bit more...
Enjoying the days....
Getting thru.

Sweet dog monitored me today:

Answers... well we asked for them.

Less than a week ago, my husband and I walked away, frustrated, from my oncologist's office. We had more questions than answers. Today, we received some answers... but we certainly didn't walk away from the appointment happy or relieved. Honestly, I'm overwhelmed. My wonderful husband is... quiet and contemplative and supportive and... surviving too...

I attended my first 'CanSurvive' meeting today (cancer support group) that included a lunch with many friendly strangers who were catching up after months apart and then going to a lecture with a counselor who talked about how to manage negative thoughts and how to reshape and redirect them. Appreciated the lecture and was frustrated to have to leave early for my oncologist appointment... Think part of the frustration was that I knew answers were coming from my oncologist.
Here's the YouTube video I took note of when I had to leave - shared by the counselor from the Well Cast Channel: interesting approach to reshaping thoughts... think I'll watch more videos from this channel, a little disappointed that it isn't quite appropriate for primary school since I like some of the topics...

I'm mentally working through the chemotherapy plans... new more aggressive plans because unfortunately my prediction was right, my oncologist assessed the lab results and confirmed that the cancer I have now is metastatic cervical cancer in my lungs. He has a much more aggressive plan for chemotherapy than he had when it was the lung cancer diagnosis. Now I have to go for chemo weekly with a rotation of different medicine each week on a four week cycle. I will lose my hair, no doubting that now, scarves are my new focus instead of hats, shall see. This protocol can have many side effects. The costs of all the chemotherapy is overwhelming. I'm checking in with insurance to see what will be covered.
I considered going to the local hospitals in Hong Kong now that I finally have an official diagnosis and a referral letter from my doctor as of today. Unfortunately, getting an appointment could take 2-3 weeks and getting treatment could take 1-3 weeks later... which isn't very promising. I'll still look into the local treatment, even just for radiation treatment, shall see.
My oncologist wasn't very encouraging about the government/local hospitals proceeding with the protocol he has created for me. He thought they'd prefer to do radiation first which he did not recommend. This means a lot to me because...
1. I want to survive, recover, and be in remission.
2. I can't imagine putting off treatment for another month when my oncologist wants to begin next week (I just hit my 2 week mark after having surgery, can't believe it will be just 3 weeks and then chemo treatment begins but as a friend said to me, those Hong Kong doctors do not mess around!)
3. I trust my oncologist. I do not believe he would exaggerate or dissuade me because he wants my business. I believe he wants the best for me.

So, will talk and sort out finances and begin chemotherapy sometime next week.
Looking forward.
Staying strong.
Overwhelmed but dealing with emotions as they roll... and they will... and that's ok...

Thinking that I would like to focus on humor a little more. Find funny videos that make me laugh, comic strips, comedians... anyone have a favorite? I adore comic strips, subscribe to many online... almost as obsessed with them as I am with graphic novels.

Appreciated one cancer survivor's story in the book Radical Remission which included her and her daughter making time at the beginning and end of the day to find ways to laugh. I love to laugh. My son does too... perhaps that's something we can do together for a new routine. He already thinks I find the most awesome videos to share with him... The librarian in me is already mentally figuring out how to organize this...

I am looking into comedians on YouTube, here's the first one I'll be watching: - Humorous guy, I like his slightly twisted approach... for adults though.

Also, I like the idea of creating one of these: http://www.comedycures.org/stuff/make-a-joke-book/ vs. making a get-well-soon card for classes, nice idea... productive, positive idea... :)

Grateful my mom suggested I reread that chapter in Radical Remission... inspiring. Good for redirecting my mind to the positive and thinking about humor.

Thanks all for keeping up with my journey. Getting through...

Ho Hum Hat, Hair Loss Thoughts

So, we have a sweet fourteen year old dog who I adore. I love snuggling with her. She's adorable. Seriously. She's been my constant companion but is honestly daddy's girl. I'm good with this. You see, I'm a bed hog. I don't want a loving dog sleeping between my legs, chin on my ankle or any other sort of endearment, I need my space... (My poor husband.) And so... she knows she can snuggle with AH (Amazing Husband) any old time she wishes, just as long as she shifts a little when I'm around.
Why do I bring her up? Because she's calmed me this past week. Snuggled. Watched over me. And been the sweetest thing... Quite grateful.

Here's the look she gave me most of the time... 

'Are you going to pet me? Notice me, I'm right here!'

So, thinking about losing my hair totally blows. I've been appreciating it every day for years... Sure, I hated those curls for a number of years. Especially during my afro hair stage in middle school... But for years now, I love these frizzy, hard to control, boinging curls... sigh. So, I'm approaching the next round of this fight carefully. I'm working on my food regimine with a focus on gaining a little more weight. Enjoying the opportunity to have some healthy walking every day... and thinking about how to deal with hair loss. Now, I know, I'm not finding out my chemotherapy protocol yet but I am trying to be realistic here... It is more than likely that I'll lose the hair. (Not to mention my eyebrows and eyelashes, yikes!!)

A lovely friend shared with me a hat that she thought worked well during her chemo treatment... got me on a mission. A few days later I found a hat that could cover my head... found two actually. And a scarf... Thank goodness I found them when I was taking a walk with a friend so I could get her opinion on them, there were so many choices in the market we were at! I was a little overwhelmed but successfully chose two.

So my dog. Why did I bring her up? Because she barks at people wearing a hat. She barked at me ages ago when I came into the house wearing a hat and then quickly stopped... so I thought I'd better wear the hat for a day. For myself to see if I could handle it... for my sweet dog so she sees me wearing the hat before I really have to wear it. And also for my son, so that seeing me in a hat or other head covering becomes a little more natural before I deal with chemo side effects more drastically. 

Wearing a hat is hot. Especially in Hong Kong where the temperature is in the 90's plus HUMID. I feel like I'm hiding underneath it. But kiddo and dog didn't even blink twice at me wearing a hat. It was helpful a little bit with the sun glare but overall, meh, ho hum hat. Not so excited about that... Goodness knows how wearing a wig would feel. I'm looking into it all now though so that I can feel like I'm taking control, addressing what I can vs. feeling angst over the unknown.

My surgeon took off two of the three bandages on me today. It was freeing and honestly a little scary. He didn't want me to put on steri-strips to protect the skin while it healed which I had to do after the lumpectomy/lymph node check during round two of operations/fighting cancer. Odd to have someone who simply says, you're healing, looks healthy and fine. I told him about some of the side effects I've been dealing with and learned that I'm normal. I'll take normal I guess. He offered me cough suppressant but I turned him down. He offered me anti-inflammatory but I turned him down. Pain isn't too bad and the cough isn't keeping me up at night. The less medication I have to put in my body, the better. I'll see him again in another week, that's when he'll remove three sutures and the final bandage. 

I received more lab test results from him and it really does look like this third round of fighting cancer is actually NOT LUNG CANCER but instead another round of fighting cervical cancer that bounced (my word choice) into my lung and lymph nodes. Officially, I'm expecting my oncologist to tell me in two days that I have metastatic cervical cancer in my lungs. Meh. When I read about metastatic cancer, I became quite concerned about my prognosis. Will I live more than 5 years? Can I beat this? What will my quality of life be? My doctor has calmly walked me through things so far... Accepting that I need to deal with this day by day. Here's a little bit about metastasis: http://en.wikipedia.org/wiki/Metastasis - Yup. I referenced to Wikipedia... bet my librarian friends are laughing... But it is in normal people speak vs. so many of the other sites I've researched and read!
So, I'm concerned about how well radiation will kill these cancer cells vs. what my oncologist was happy about before with the lung cancer prognosis... and how well chemotherapy will help... and which type of chemotherapy will be prescribed... so fixating on wearing a hat- a good distraction.

It was a wonderful day today. I Skyped with one of my best friends, spent time with my sweet son and took a great walk with him, and also chatted for a while with my wonderful Rabbi who is introducing me to someone who might teach about Qigong, interesting practice. I chatted with my life coach tonight which always feels like an inspiring blessing. Plus my son gave me a double high five for getting all three balls in the breathing practice tool up simultaneously. I was proud of myself too. He said I need to practice more though so it becomes consistent. (Love that my kiddo is finding goals for me.)

Me in the slow hot elevator at the beginning of my wandering about day. 

Cute enough hat. It'll do.