A bit of a down week

Had to go to the dr. for pretty much the whole day on Friday. Somehow, I have an infection (something bladder related?) and also I was dehydrated again.
Sigh. How was I dehydrated? I don't know. Really. I'm drinking water all day. Swallowing water has been much easier lately. And today I had a yoghurt... I don't know what's going on but I am still eating slowly but starting to "eat" again here and there which is a relief. One of the nurses today when she was administering my third dose of Nivolumab said that I needed to not forget how to swallow and then corrected herself realizing that I'm still swallowing...

Was really relieved to get Nivolumab today. And then on Dec. 5th is my 4th dose.... then my oncologist wants to do a CT scan to see about tumors, etc. Crossing my fingers. Staying mostly positive... although this week when I was nearly blacking out again because I was dehydrated was really confusing. Glad I got into the dr on Friday and had things checked out. On Monday I saw my oncologist and she brought up that I might be dehydrated but then said that all the lab work didn't indicate it... so I didn't contradict... but now, if I wake up shaking, almost faint, etc. I'm calling right away to ask for a fluid IV push. I've never liked needles stuck into my arms and getting fluid that way does suck... had to get 2 bags yesterday which took 1 hr and 15 mins each... but well worth it for waking up today without feeling faint. I also had to have a chest x-ray to make sure that I didn't have pneumonia or anything, nope, phew. And the feeding tube was part of the x-ray and everything looks "right" with it- good... now if it would just stop sending pain waves I'd be happy...

I have been losing weight. I admit it. I shifted back to the original formula mix for my feeding tube that has more calories and am trying to eat things that might boost calories as well. Going to start bringing drinks beyond water and formula to school again in the hopes that I can stay hydrated and boost my health. Shall see.
My oncologist told me part of the reason the feeding tube hurts me so much still is that I'm so darn skinny that there's no cushion. So everything is pretty darn sensitive. I've noticed that, especially those days when I'm stuck in bed and feel bruised on my hip because I can only lay on my left side and that hip is just skin and bone... Can't wait to gain weight. I remember when we got home from Hong Kong and I was so proud to finally be at 130 lbs, oh where did I go wrong back then? Oh yeah, ding dong tumors...

Thinks I noticed randomly connected to using the feeding tube:
1. The clamp on the feeding tube is really useful.
2. If you don't have the clamp locked and you're feeding yourself, do not cough. Do not blow your nose. Otherwise you are going to get an explosion of liquid and other things from your stomach. YUCK.
3. I don't "push" my food in, I pour it in a tube thing and then have to wait for it to drain into my stomach. If it is the end of the day, it doesn't go so smooth. What normally takes 15 minutes to feed myself takes 30...
4. If I lean back at an angle, my stomach releases air and makes freaky sounds. (I think they're freaky, as does my mom, my husband on the other hand hasn't said a word.)
5. Do not get distracted when feeding yourself. Especially towards the end when you're really just wanting to be done. That's when mistakes happen and your stomach gets the better of you and water spills all over your jeans mid day at work... sigh.

I look forward to chilling out tomorrow with a few very good visits and then getting back to work without worrying people. On Thursday I called my parents and asked them to accompany me home because I just didn't trust how I was feeling... Sigh. My parents helped me for three days straight with visits and appointments and support. Very grateful. This past week was shoddy for my attendance... Monday was ok, Tuesday I left at 1:30, Wednesday I went to a meeting at noon- couldn't move sooner without feeling faint, Thursday I went to work after noon and stayed til 4 and then had parent support... Friday- missed work. Hate how quickly I'm using up sick hours/days that I'd accumulated so conservatively through the years in my district but thank goodness I have them... very grateful.

So... my focus presently is to figure out things (besides doggone dairy) that will boost my calories but won't make me choke or hurt - tried to eat some noodles yesterday. Whoops.  Didn't get stuck/pain in my esophagus but it was close... and as anyone close to me knows, I live for noodles... Sigh. I'll figure out a way.

Thanks for journeying with me as always... quietly getting thru the days.

Really interesting approach to Parkinsons Disease:
http://www.cbsnews.com/news/fighting-back-against-parkinsons-in-the-ring/

More hope, yes thank you, immunotherapy time is coming

At the technology/Future Ready Conference on
Friday. Had to wear my shirt to show that I'm
balanced between technology and print materials.

So, something happened today that should have occurred four months ago. But I've accepted that we're simply here now.
I saw my new oncologist today.
Got very clear, honest opinions from her. Received hope, hope, hope.
My husband and I walked away saying, "Yes, this is what we need."
Shall see about that one immunotherapy drug that connects to my biopsy/Foundation I testing. It might take some time to get approval for it. My new oncologist is willing to have me get that still. BUT she's working now on getting me on what I wanted to get on 4 months ago: Nivolumab. An immunotherapy drug. It is the one that is in a phase II study for metastatic cervical cancer patients.
 http://www.chemocare.com/chemotherapy/drug-info/Nivolumab.aspx
https://www.mskcc.org/cancer-care/clinical-trials/15-116
She wants me off of Avastin. Said that it isn't really viable on its own and she doesn't find a need for it in conjunction with Nivolumab. I'm honestly thrilled with that.

I am hopeful.
I am grateful.
I am relieved.

Avastin with blue planes? afterwards. The nurse got
a lecture from me and was much more careful and
aware of what went wrong with our last session.
She used a heating pad and did the "drip" on a
different vein. No new bruises, phew. 

My brain MRI led to nothing new (thank goodness!)
My PET scan led to not too much new, although apparently I had some time of a rib fracture on my right side?! Odd information but makes sense where I was hurting for around 3 months on my right side after surgery last August. Apparently there's something that lit up on that side but shall see. My oncologist was not concerned. It wasn't highlighted as a concern.

I'm hopeful.

I do have to go and get the endoscopy on Thursday. Shall see about pain afterwards. Not thrilled. Shall see if the stint is put in. The gastro-enterologist is concerned about the fact that I got Avastin last Friday. He's not sure if I will heal well if there is any cuts internally. Shall see what he decides. I just want to swallow consistently again. I'm on Prilosec which seems to have eased some things in the morning a tiny bit- less throwing up incidents, but still having issues overall. Getting food in as much as I can but I'm now down to 118, sigh. At least it isn't more, I guess.

Bridge on our way back home on Hwy 101.

Friday was a bit busy with a tech conference, a chat with my oncologist during one break, Avastin treatment, and then meeting up for a carpool down to Coos Bay. My friend and I chatted all four hours on our way to Coos Bay, so wonderful... The doctors on Thursday had looked at me with raised eyebrows when they heard my plans for the weekend but I had faith that I'd planned things out well enough, and I think I had... I actually was able to get to the conference in Coos Bay and present on Saturday. I took a lot of breaks that day but really enjoyed every minute possible. Loved meeting up with educator/school library colleagues from around Oregon and also some beautiful, inspiring author friends as well. So many wonderful hugs exchanged, filled me with such happiness... Overwhelming a little bit, but in a good way. Sunday I slept and rested and rode home with my lovely friend who was fine with a quieter Debbie and an audiobook.

So... getting thru the days. Looking forward to a few non-medical, more work focused days. Hooray for them.

Thanks as always for journeying with me.
Here's to hope.

I loved seeing this blooming still...

A Little Hope? Yes, thank you.

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

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

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

Oh, hi chemo, you again?

Multnomah Falls behind... carefully paced myself with this walk.

I've had a few very full, good days.
Meeting with new administration made me happy and grateful for support and faith in my abilities... Having time with family replenishes my energy.
Meeting up with families I treasured at my old school and seeing how much my former students have grown was special...
Going to the beautiful waterfalls at the Columbia Gorge was fun...
Meeting old and new colleagues for the future was wonderful...

Going to see my oncologist today was... mediocre. He very thoughtfully answered all my questions and clarified the situation at hand. "I hope you can understand, we're at the end of our options with treatment for you at this point." He is going ahead with Foundation 1 testing that I know needs to be done using the cells from the biopsy.
He wasn't thrilled with my question about off-label prescription of an immunotherapy drug but I'll be patient as I know Foundation 1 testing needs to happen to see about targeted therapy. He mentioned that having one patient getting a trial drug is not something he'd recommend. I say? Tough. I want to try. So, shall see...

Our sweet 15 year old dog Dulcie and I chilled out while
the guys went on with the hike... She was happy when her dad returned.

He also decided that we should begin chemo again, but not the scary kind that makes me lose my hair or decreases my white blood cells...
It is Avastin, chemo that is what he calls "single agent" to slow the progression rate of my tumors.
It does have side effects, hard for me to really know how I'll react since before when I had three chemo drugs being pumped into me there were so many side effects. I know I had a bloody nose. I know I didn't heal as well with scratches and such. There's loads of side effects listed on the website- http://www.avastin.com/patient

We talked with him about WHEN to have the Avastin begin and he said "Now"... So, tomorrow I begin. I'll get Avastin once every three weeks. It will take two hours or so vs. 4-6-8 hours of past chemo sessions. I am negotiating on time and such presently as they don't do treatment on Saturdays and I'm not thrilled with impacting work every three weeks. I also have to have a doctor check in 1-2 days before the treatment and those appointments are not available in the later afternoon. I know that most cancer patients aren't working full time and such but MEH to having to impact work hours. Shall see what happens. I'm concerned with things happening every three weeks. I looked at the calendar and at least I won't have to have chemo on my birthday.

---

Multnomah Falls is just astounding... so beautiful.

Other thoughts recently:
Reconnecting with a wonderful friend, Trudy, was beautiful and uplifting the other day. I appreciate the interesting resource she sent my way. Helpful article with some supplements that provide new ideas.
http://bottomlinepersonal.com/4-secret-cancer-fighters/

I appreciate that there's new options to help slow tumor growth, etc. Healthy living is also a bonus.

We also talked about how I was frustrated to not find support groups here in Oregon. I knew I was in a truly wonderful supportive environment in Hong Kong. Hoping to connect with people here. Trudy sent me a list of groups... Hooray, thank you again Trudy!
I find this list promising:
http://www.breastfriends.org/breast-cancer-charity/affiliates/oregon/oregon-support-groups/

I was frustrated with most groups because they meet during the daytime hour.... can't make it, but if I could, I'd attend these group meetings:
http://www.legacyhealth.org/health-services-and-information/health-services/for-adults-a-z/cancer/all-cancer-services/support-groups.aspx

http://www.cancermatters.com/portland/cancer-support-groups-2/gynecologic-cancer-support-group-2/

http://oregon.providence.org/~/media/files/providence%20or%20migrated%20pdfs/patients%20toolkit/cancer%20support%20group%20list.pdf


Also, appreciated learning about Harmony Hill- a retreat that is available to cancer fighters/thrivers/survivors: http://www.harmonyhill.org/

Alive Inside- what a beautiful inspiring movie... touching... made me cry a few times. Hooray for music and connections and respect and support... brilliant, highly recommended. Thanks to my mom for telling me about it!

Our alert Dulcie... She isn't showing side effects yet with the sarcoma.
Love our days with her. Proud of her ability to still go on family adventures!

Well, even though I'm returning to chemo, at least this time it won't be so debilitating. 

I will still be able to enjoy the days.

I'll still pay attention to my stamina.

I'll enjoy spending time with family.

I'll be able to work and settle into my new "school home"...

Thanks for journeying with me, as always...

Patient Advocacy, I want it.

Well. I hit my limit today.
I'm calling to talk with a patient advocate consultant at the hospital I'm going to in the morning.
I'm so frustrated with the situation I'm in...
Initially at the time I agreed to have the biopsy on my adrenal gland, I specially clarified that there a DNA analysis/molecular testing would be done. I received the answer "yes" and an explanation on how good the hospital's molecular testing was vs. any other hospitals' molecular tests...

I got the biopsy results last week but couldn't read them because the access is "granted" but not viewable for me online, and I'm pretty tech savvy, if I could see them, I would. The doctor finally copy/pasted the results into the text of an email today. I immediately saw that they didn't do the genetic testing that I was told would occur with my biopsy sample.

I asked what happened and had this answer:
"The reason for not obtaining them at the time of biopsy is because we didn't know what the primary source of the tumor was. 
It would likely be reasonable to ask for the samples collected to be evaluated further for molecular testing. You're a young patient, and if there are any mutations within your tumor, knowing that may help direct therapy. The decision to order molecular testing would need to be made by ...Dr. and ....Dr."

I have an appointment this Thursday but am concerned that it will be pointless because the oncologist will want to talk about chemo and I won't unless there's precise analysis of the tumor. I'm not going to want to do chemo without knowing it is actually worth it...

I also can't go ahead with any other research for treatments without that molecular testing/DNA analysis. Every place I called asked for those tests.

Exciting to have a new, reliable car.
Another Prius- my favorite color!

So frustrated.
I wrote to the oncologist I'm seeing on Thursday with my frustrations and a request for molecular testing, shall see.

Feel like I'm getting the run around. Being bounced from doctor to doctor isn't all that wonderful. I'm sure they all have the best of intentions but I'm noticing things slipping and not being done... and having to call to beg for appointments instead of having referrals isn't fantastic either... Hopefully a patient advocate might help me. Shall see.






Besides that frustration, I've been enjoying life... having work meetings, getting a new car (purchased with my last paycheck from my previous job/loan- hooray to learning how a lease isn't a terrible thing...), and enjoying time with family and friends.
Energy is there. Ebbs and flows and I'm just riding the waves and enjoying the days...
Went to a movie with my mom and sister today called "The Prophet" and found it quite powerful. It was animated... gorgeous. Wish I could have had a remote control and hit pause after certain points because it had so many deep, thoughtful moments and then quickly moved to another deep, thoughtful moment without time to digest the previous one. It also made me quite sleepy.

So proud of my sister and how she pursues opportunities to
share her talent with the world!!

Also had the chance to meet a few people I'll be working with this year... feel like this are progressing in the work setting, happy about the future with that. Excited...
Shall see how things go otherwise. I'm excited about meeting with family this week and going on a few adventures as well. Had a great trip to the beach this past week, was restorative. Also loved going to a SMART (Smart Making a Reader Today) event at Powells books and seeing fantastic author and illustrator friends, they inspire me so... Plus seeing my incredibly talented sister perform in a musical was fantastic.

Loved this beach- Hug Point... Oregon Coast.

I'm appreciating the nutritional program I'm on. I'm happy to have the time to focus on helping my immune system get stronger. I also am relieved to have those essential oils because with the air quality being a little poor recently with terrible forest fires in Oregon/Washington, the oils help me stop coughing, a little...

Thanks for journeying with me!

Answers, wasted time?

Love my new Harry Potter dress... picture taken last week.
I can see a difference in my hair growth in a week...
nice to feel stronger.

I know. Take it one day at a time. But after 5 weeks, I'm slightly put out that my doctors here finally agree with my oncologist and many other specialists in Hong Kong.
Talked with an assistant today who confirmed that I have metastatic cervical cancer. A relief to be out of the 'what in the world is he talking about, another cancer?' zone we were in for a few weeks there. Funny to talk with someone who asks, "Is your partner there? How are you feeling? I know this must come as a shock." Of course, my answer of "I'm fine, I'm relieved that my diagnosis, chemo and radiation treatment over the past year was for the right type of cancer, now can we get to scheduling an appointment with the next specialist please?"--- this might have thrown him off. I have to wait... AGAIN for another tumor board meeting this Thursday... then supposedly I might get an appointment this Friday, we'll see if  it happens. I'd be thrilled.
The assistant brought up chemo and how I said "no more chemo with the surgeon's assistant" but I clarified with "if it is targeted therapy that is actually confirmed that it will do something, I'm open." I really plan to meet with whichever specialist they finally refer me to and bring up the possibility of getting an "off label" prescription to an immunotherapy drug that looks promising and is being used with cervical cancer patients since I don't qualify for the trials with my dual diagnosis (breast cancer)...
For now, I'm really grateful that I'm keeping up with things and trying out a few new options...
1. I'm still oil pulling in the mornings.
2. I'm finishing my third week using nutritional supplements that help heal and strengthen my immune system. - Mannatech - http://www.mannatechblog.com/uncategorized/give-bodys-defence-department-boost/
3. I'm doing qigong sporatically, will get a routine going...
4. I'm still doing essential oil application every morning.
5. I'm still practicing healthy food intake including lemon water in the morning, green juice, no sugar, no nightshades, and more... added in solar water/blue bottles in sun which I'm loving since I don't enjoy drinking freezing cold water.
6. I tried out a "Journey" practitioner who led me on a deeply personal experience visiting past emotions and dealing with forgiveness... probably will share more on this another time.

So, I feel like I'm proactive and not doubting my choices, still working on my patience but happy to stop doubts... focusing more on my well being and being balanced instead of worrying about tumors...

Thanks for journeying with me...

Careful day by day even on down days

These days have been really rough. More than other chemo reactions, I think.

Monday- stomach flu plus chemo side effects left me almost fainting in bathroom trying to take a shower, etc. Barely ate anything.

Tuesday- pushed myself to go into work thinking I'd get thru like other days. Unfortunately, I got shakey and weak and couldn't even figure out how to get myself home until my kind principal sorted me out, walked me to get a taxi and sent me home. Barely ate anything. Tried to do qigong in evening but unfortunately I didn't have energy, class changed to Friday thanks to patient teacher...

Wednesday- felt shakey, didn't want to take the risk. At mid-day I got a call... received the gift of two more recovery days. After a little protesting I thanked my wonderful admin and then thanked my lucky stars. Still can't eat much, got some soup down.

Thursday- FINALLY I had ability to eat. Took two hours to eat breakfast but ate lunch a tiny bit speedier and my husband cheered for me at dinner when I ate my rice and veggies. Feeling weak still but just grateful for healing time.


Missing work and kids. Didn't expect to miss a whole week of work. Oh well. Last chemo, being patient with myself. Doing deep breathing. Now that I'm not as shakey, looking forward to doing qigong exercises again.


From my beautiful good friend who is recovering from a serious operation and has a clean bill of health, thank god:

If this experience has taught me anything it is that we are all in this life together...through the good times and bad. The only thing that makes it bearable is the love from family and friends. The Brazilians have a word called 'saldade' that does not translate to English well but in essence means a sweet longing. Sometimes it is for something you know will happen someday, you just do not know when, sometimes it can mean a sweet longing for something that may never happen but you always carry it with you with such hope and longing that words cannot describe it. Sometimes it is both things together. I feel such saldade for you, a sweet longing that your health straightens out, that your energy returns and you can return to the life you had before this all began.


Thanks for journeying with me...

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...

Day by day....

I love my dog.... last picture of me BEFORE my hair all fell out.

Allowing my emotions to flow thru these ups and very downs kind of sucks sometimes.
After clumps of hair coming out this morning, I acknowledged that I'm past the thinning stage and going back to the bald stage. Unfair. Sucks. Must I really live through this again? I loved the curls that were finally growing out! Sigh. I know there are many worse things but I do not find the silver lining of having to go bald again after 6 months of bald already and 3 months of seeing hair. Not cool. Like I'm getting teased in a bullying way... but I chose this. Chatted with the kiddo about it and told him I'm willing to deal with hair loss and chemo side effects if in the end I can be with him much longer...
Many of my students asked me if I was ok today. One said I looked sad. Not too many asked 'why' today, but I was ready.
My good friend told me what her friend used as an answer to students: "I took some medicine that makes me lose my hair but it will grow back out."
I've had a few times today when I'm just feeling miserable. Many people kindly avoided pointing out the freaking hat and just led on with normal life, having interesting conversations and being good distractions. I appreciate work distractions so much. I'm certainly aware and recognizing my emotions, but I really don't need to be fixated on them 24x7. It is much better to be working than to be staying at home on my own trying to be healthy and balanced... So much more is accomplished and I just love being around my colleagues and students.
Appreciated snuggling and silent side by side reading with my kiddo. Love when he's lost in a good book.
Loved snuggling and talking life things out with my husband, grateful for our time together...
Also snuggled with my dog for a long long time, to the point where she looked at me with those "mommy, I really want to sleep now" eyes... So, to bed I go.
Got thru this day.

And so wearing hats begins again... At least they have style!

Another day has passed. I was tired and found that old pains that hadn't tortured me in a few weeks had returned. Thoroughly annoying. Did lots of deep breathing and stretching. Think they helped.

Many days ahead.
Will plug my way through each one gently and carefully. Thanks for journeying with me...

Oh, duh!

A glimpse:
Gee. I feel pretty terrible. I wonder why? Shaky, weak, stomach issues, and more? Blood test says? Very low blood cell count. Ahh. That's right, chemo kills off blood cells. Glad I changed my oncology appt. to today. Answers on the spot, helpful. Might not get chemo on Saturday unless cell count goes up? Great... just want to be done already.
Gather up energy, head home. Jump in bed. Ask husband for a burger. Yes, that's right, a burger. Plus eat dinner. Time to feed the body. Rest. Rest. Rest. Kiddo time. Finish book together silently reading side by side. Reading aloud won't happen til the last few pages. Coughing fits galore equal my evening. Rest. Rest. Rest. Qigong. Sleep.

Appreciated this meditation video my acupuncturist told me about, good one: https://youtu.be/wHnl_XugJyE

Can't wait to make this horchata recipe- I LOVE horchatas, this one being healthy with chia seeds, etc. sounds terrific...
http://www.huffingtonpost.com/2015/05/01/horchata-recipe-rice-free_n_7185014.html?ncid=fcbklnkushpmg00000063

Quick journeying share but I got thru a low day and family time made things quite positive... so did a few classes today, enjoying unit I'm teaching and students I'm seeing. :)
Thanks for coming along as always...

Getting along day by day

My qigong instructor shared a video with our class many weeks ago. I finally made time to watch it, under 30 minutes and well worth the watch, fascinating. It was worth learning about the meridian lines, the healthy practice this incredibly knowledgeable person does every day with acupressure, breathing, and a knee bending exercise... glad I watched.

Hair hair hair. I'm back at that stage that I remember all too well from the first round of chemo: itchiness. The kind that made me think I had lice. Yuck. Poor skin cells, they're so confused. Happily growing and then hit by this medicine. It's doing what it needs to do. I WILL NOT shave it off though. Will tolerate the itchiness and hold back from scratching like a maniac. (Not hard to do, not like mosquito bites.) Sigh.

Two days later- meh. Hair is starting to fall out a bit. Will just carefully watch it...
Went to my acupunturist, been too long since I did that... Helped me a bunch. I am trying out his mix of Chinese herbal medicine in a drink form (I always drink one from him twice a day) just for this dang cough that won't let go. Today I coughed so hard it took me a while to recover. A younger student asked me why I'm coughing so much, I said "because I am..."

Decided to explore a new treatment option, a little concerned with it but keeping an open mind and have read one book and will learn more in the coming week. It is called Paida and Lajin. Shall see.

Enjoyed a Labour Day holiday, Friday, off today... rested most of the day, took a walk with friends, and rested more. Didn't feel any guilt for being chilled out... Felt like I was in deep thoughts most of the day, guess I needed a rest after work... plus I've had terrible sleep for days and days and I think I'm just darn exhausted. Probably will do a few things tomorrow though with the kiddo.

Thanks for journeying.

Quieter day

Just read thru the bits of this site on anticancer herbs.
http://www.herbs-info.com/anticancer-herbs.html
Interesting.

Had a long work day.
Wasn't very thrilled with being at work. Couldn't fake it... Counted down the hours til I could leave and go to my oncologist appointment. Not sure why.
Found out that the operation and radiation has made me susceptable to bronchitis and other lung related bugs. Know I was warned this Oh boy. So... I'll get through this. Coughing sucks but at least I will work on strengthening my immune system.
May 9th is "the last day" of chemo. We'll see. The last week in May is PET scan week.
My oncologist said today, "I know this has been hard on you but you've been strong, you're handling chemo well and you can finish this." Why, yes I can. Never doubted that. Just want to get there.

So I'm feeling quiet today. Reserved.
I read about a new app the other day and added it to my iphone. Think it is interesting, reminded me a little of Headspace app. It is called Happify. I didn't appreciate the bits of it that asked me to upgrade/spend money but I appreciated the intentional positive parts... games that are focused on making you think about positive words. Especially, I enjoyed watching a few of the videos that it had on the rainbow button, those made me chuckle...

Snuggled with kiddo. Co-wrote a story with him (it is terrible but at least I'm writing again) and I fell asleep around 4 times while reading him his bedtime story, poor thing, he kept reading aloud to get me back in place to finish. Finally he said, "Mommy, just let me read aloud this page so we can finish, I think we both need to go to sleep soon."

I know it is nuts but around 9pm I wake up. So, sigh, going to read and chill for a little while.

Taking the up days and down days. Appreciating waking up and all that jazz.
Thanks for journeying with me as always...

A spin for the positive

Well. I was a little upset this morning having to go for another chemotherapy round. But after an hour, I was feeling pretty positive. This week I didn't have to get blood drawn which is always lovely. I saw my oncologist and talked with him about all the pain and coughing I've been having. He poked, prodded, looked at my bruise, listened to my lungs, tapped me in all these different places and concluded that I had bronchitis but that my lungs were surprisingly clear. I have to be on a few medications to clear things up but that's ok... It is bearable to swallow pills that could stop me from heavy painful coughing. That's all I needed to hear from him, deep breath in, out. Reassurance.
I am so glad that I got to do these last two rounds of chemo with my oncologist. I'm comfortable at the clinic. I like and trust the nurses. They make me feel valuable and cared for. There were 6 patients all getting chemo today. I got to the clinic a bit early at 8:10 and saw my oncologist at 9am. Then at 9:30 am they started the heating pad on my hand. Then around 10:00am I got the line in my left hand. My veins are recovering from the last rounds of chemo. I can heal. At 10:30 I started getting the pre-drugs- allergy and antinausea medication. At 11am I got Taxol and it took 3 hours to get it in me. It is normally 1 hour but since I'm only doing two chemo infusions for the last two rounds, I get the triple dose. Then I got Avastin at 2:00pm and Carboplatin at 3:00pm. Then at 3:40pm they started pushing saline into me to clear out my vein, this lasted til 4:30. That's a long time overall. Like a full time job.
I shared with my nurses about an interesting new invention that lessens the complications some have with their veins, the ladies thought it was good to read about:
http://www.industrytap.com/veinviewer-means-no-poking-people-relentlessly-locate-veins/27706
They were also excited to talk with me about the lyphodoema specialist I saw... I felt useful and able to share a little knowledge, made me feel more at ease...
I had a book to read, it was good. I am enjoying an audiobook called You can change your life by Louise Hay which is really helpful. I had magazines and games to play as well. I even got to Skype with my wonderful parents until my mom noticed that I yawned a few times within a minute. I did nap on and off, didn't fight it but there were so many people around me I didn't deeply nap/sleep. I finished with a smile.
I walked back to the MTR feeling at peace. I found a place to sit down. I got back to Causeway Bay and visited the pharmacy. As I was walking to the pharmacy I tried out what Louise Hay mentioned in her book, that you can have positive intentional thoughts... so I thought "I'm going to have a good visit to the pharmacy and they will have what I need." I went to the pharmacy where they recognize me and are really helpful and friendly. I talked with the owner who asked how I was doing and feeling. He looked at my list of medication (8 drugs in one prescription sheet, sheesh) and said, I am giving you a discount today. So I got reasonably priced medication. Then he said to me, please make a copy of this receipt and then when you visit again, I will match with the same price for the prescription you buy. Ok, done. That was certainly a good visit to the pharmacy.
I enjoyed the visit with my son when I got home even with a few glitches in our interaction and then had a delicious dinner and a really helpful qigong session packed with breathing exercises which was just what I needed. The anti-inflammatory has really helped me plus I think I'm feeling mentally better about things so the pain in my lung, side and back has lessened. I'm so relieved about that...
Getting thru the days. Will see about tomorrow. Take the day carefully. Take my anti-nausea medicine. Not push myself. Looking forward to it. Think it can be a good day. My husbadn has asked me to take taxis for his peace of mind as a journey around for the next week. I can certainly respect his wishes. I did take the MTR home but that was because the appointment was in Mong Kok and it is a new place for me and I felt calmer just taking the elevator down and going into the MTR to go home vs walking around buildings looking for a taxi stand, felt like I was protecting my energy...
As always, thanks for journeying with me, visiting on my ups and downs, for a chemo treatment day it had a few downs but I'm just really surprised how many ups I've had... One more and then I am done with chemo. Wow. I can take it all day by day but "one more" makes me smile presently.

Still can't quite smile at first in these sessions but I got my bottom to the seat.

Drugs working their way into me...

I appreciate that the needle is mostly covered...
Heat pad underneath me to ease the pain and stinging as the medication went in...
Was ok, not terrible pain, just eased with a little heat.

Going ahead, going ahead...

I've been in a tailspin down down down this week even as much as I knew better, I couldn't refocus my brain. I have been dealing with heavy coughing this week. It is really annoying. I also am dealing with some new pains that really upset me. My brain surprised me. I hadn't thought cancer when dealing with pains in the past but this time I freaked out. I haven't talked with my oncologist yet but I'm now down off the cliff, mostly. I noticed an odd bruise in the lumpectomy area which was worrisome and my scar tissue under my armpit felt terrible. Additionally my right lung returned to having that butterfly thump when I breathed in/out and some sharp pains in other areas of the lung. I know I'm acutely aware of my body and the signs it is giving me. I'm also aware that I have a lot of nerve damage after surgeries and radiation as well. So. Shall see what my oncologist thinks on Monday. Hoping that I actually sleep tonight. It didn't help that this week has been abysmal for sleep... with the coughing, pain, and more I've been a bit miserable. I think the anti-inflammatory has helped lessen the amount I was dealing with on Monday. The worst was Wednesday when I couldn't hold up the book I was reading to students with my right arm and I had to pause at times to deal with the pain spasms. Coughing randomly throughout the day doesn't help matters. I've taken cough medicine and no, it doesn't help. Lung pain might be an infection although I haven't had a fever... will find out soon.
So... yeah. Dealing with that.
The local hospital situation is over. My husband went in for me on Friday to talk with the oncologist who said the team of oncologists discussed and decided on option 1- wait and see. Heck no. That's not our plan. That's not ok with us.
I never cancelled my chemo appointment with my oncologist so that's on for Monday. Told the insurance company and the other person who encouraged me to check with the options at the local hospital the results. Done with one unknown. Gonna get thru this.
Really enjoyed the conference I attended with friends. Had a fun bbq fancy dinner with Megan the night before. I feel amazed at how lucky I am to have wonderful friends, professional development that inspires, and can't believe that I live here, in Hong Kong, where I can hop on a jet boat with a few hundred people and travel to another region... just a Hong Kong id card and passport and hello Macau. I'm not a gambler so bright lights and glitz simply make me chuckle. Serious security guards in banana yellow formal jackets make me chuckle as well.  Had a fun time there.
Thanks for journeying

My friend I've met thru a cancer support group sent me this. So true.

I liked the lighting at the hotel we stayed at...

Yup One of THOSE weeks

This week has been a struggle for me to be honest. I disliked Monday's visit with the oncologist at the local hospital. Tuesday and Wednesday I dealt with a lot of pain in my right lung and scar tissue under my armpit and more. It is limiting my range of motion, etc. Not sure why it is happening but riding the waves of pain and trying to refocus on healthy breathing even though it hurts. Funny enough, I'm certainly noticing my breaths while I go through the pain and realize when I'm breathing shallow, etc. Not sure if I slept wrong, slipped something out of place, etc. Just know I have pain. Shall see how the rest of the week goes. Started taking an anti-inflammatory and will see what my oncologist says. The pain is a tiny bit more bearable today- Thursday. Still finding it a little odd/disconcerting but working hard to staying positive and not worrying about one more thing.

So we are waiting for decisions from the local hospital still but can't do anything about that presently, sigh. I've made good decisions so far with my oncologist and I trust his plan.
I went to a cancerlink support group meeting Wednesday and the guest speaker talked on energy healing. She led us through two meditations- one was specifically on breathing and bringing energy in and the other was visualization. Interesting woman. Interesting process.
I appreciated this breathing exercise for people with insomnia, tried it last night, certainly distracted me into sleep. Reminded me a little of yoga nidra.
http://www.theglow.com.au/wellbeing/4-7-8-breathing-sleep-technique/#ZmpZbsQ
Breathe in 4 counts, hold breath 7 counts, breath out 8 counts. Sure. I can do that.

I apologize to any friends who became concerned after the last post. I'm trying to stay confident and positive about the plans ahead. The fact that we're exploring the local hospital doesn't mean I'm changing any plans. The local hospitals here are good. Just not what I'm quite comfortable with. BUT if they are willing to provide the exact same chemo plan my oncologist has made, then we would go with them. Otherwise, I'll go ahead with the chemo with my oncologist. This would mean beginning on Monday. I will not be going with the local hospital if they say "wait" or "only 2 of the three chemo drugs". As I mentioned, perhaps not clearly in my last post, I refuse to compromise my health. Gotta have Faith.

The days are good at work. I love the kids. Appreciate my time with colleagues. They make me laugh, think, reflect... such a kind, wonderful bunch of folks.
I'm looking forward to going to a technology conference on Saturday. I'll be going with my wonderful friend Megan and then see my friend Dianne make a keynote speech at lunch (I love her presentations, such a talent.)
I posted about the library job I'm leaving here in Hong Kong and am really hoping that my admin can find a good fit to replace me. Hope they find someone who can grow into the role, shall see.

Thanks for journeying with me...

Being Incredibly Controversial

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

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

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

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

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

Thanks for journeying with me as always...

Reluctantly returning to chemo

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

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

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

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

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

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

Thanks for journeying with me...

Did you just say "sewing machine"?

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

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

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

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

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

Hey, there's more hair there!

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

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

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

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

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

Plugging away and getting thru the days

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

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

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

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

Thanks for journeying with me...

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

And then she said...

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

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

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

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

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

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

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

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

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

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