Pulling Rabbits out of Hats and #13 Chemo

Feeling a little... tired of my oncologist. Think a break is in order- 8 days away. It hit me last night that I haven't been away from home for four months. I know many people don't get to travel/get away from home at all for years, but for me, I think I'm going a little stir crazy and am so excited to get away a bit.

Today my "counts" were done. Not happy. Not thrilled. Have to go back quickly tomorrow morning for an injection of Neulastim to help boost my white blood cell production. Heard it will hurt in joints, will take some medicine for that as well. I can sneak this treatment in right before my kiddo's birthday celebration...
http://www.neulastim.co.nz/what-you-need-to-know/
I did gain weight, I am quite pleased with my progress. The wonderful oncologist nurse who is the most honest and helpful bluntly said to me, "You know, that could be water retention from the Taxal you're on, so let's keep an eye on that..." sigh. I'm still eating double at most meals and trying my best to get healthy food into my system. Stomach isn't always lovely but it is fluxuating.

So, I talked with my oncologist about treatment, gave him the article I'm curious about, and began my 4th round of chemo. Took a really long time, enjoyed a podcast and reading an eBook and snoozing since I was on my own this time. 8:30-2:30... (Good I was on my own though, another day of 6 chemo patients all lined up getting treatment...) I was able to catch the MTR over to my last yoga class with the instructor I like/respect. Have notes, will try to keep up with practices shared. Mindful walking is a good one that I can do anytime with a focus on breathing and peacefulness.

My oncologist pulled another rabbit out of a hat. Super frustrated but so much is unknown you never know. He said today, "So after you're finished with radiation, I would like to do two more rounds of chemotherapy if your body can handle it." I honestly squawked a little and he acted like we'd talked about this before. Hmm. (Husband mentioned that he didn't remember anything about this... Glad I'm not going nuts.) He pointed out that this 4th round is to shrink the tumor and then a 5th and 6th round would be for cleaning up any cancer cells ping ponging around in my body after radiation. Not sure about this white blood cell count going down. Shall see how I'm doing and take things carefully, no assumptions needed.

I'm honestly feeling pretty strong although a few people at the yoga session mentioned I was pale. I think anyone would be pale after sitting in a chair getting chemicals pumped into their body and then speed walking around Central to make it to a yoga class. Shall take it carefully next week. Have permission note to return to work next Wednesday-Friday working full time, then continuing after the holiday. Will take things one day at a time, can't worry about what I don't know, can't fret about energy, will just stay positive about getting to work and enjoy being around people I've missed for three months. My concern is dealing with negative nellies and having to redirect their conversation with their worries about me in every interaction. Already happening right and left and it isn't what I'd like to have conversations about... staying positive is what I want. Shall see, can't control others and their worries, assumptions, and caring concerns. Can just control my reactions, right? I know people have the best of intentions and I also know some will be assuming/wondering things like, "What is Debbie doing back at work? Is she going to faint on us? Can she handle the workload/teaching? Isn't her immune system to weak too be around a school?" I have no idea, can just have positive attitude and enjoy time there with the best of intentions to fulfill work obligations and keep my health as a priority simultaneously. My kiddo has been faithfully introducing germs my way as is my husband who works at another school, so not assuming anything, just going to be careful. Might be slipping a mask on when I see an especially sick group of kiddos, already wrote to my wonderful school nurse and asked for hand sanitizer which I will be applying throughout out the day! I already have things sorted a bit for instruction and am looking forward to catching up with students and staff.

Received this lovely scarf/hat from a wonderful friend- 

thanks Debra, perfect timing as it is getting a little chilly now.

I actually went to the store the other day and picked up a few pairs of leggings/pants since I was swimming in pairs I have and a little desperate for different selections, 

so happy to find ones that actually fit.

*Yes, I'm noticing my eyebrows and eyelashes are thinning,
part of life... Happy to be here.

Thanks for journeying with me...

Immunotherapy and Changes

Looking forward to our family trip to the Philippines, countdown, less than two weeks. I know I've mentioned it before but I'm so grateful that we're living in Hong Kong where amazing, beautiful places in Asia are at our fingertips at a reasonable price. We are going to meet some good friends when we get to the Philippines and hope to see whale sharks while we are there... and possibly other adventures. I'll take things day by day and not push myself, happy for my son and husband to have the adventures and for me to live vicariously.
Mentally readying myself for treatment this Friday morning, happy my son's birthday is Saturday (and that I'm able to shift chemo to Friday so I can focus on my son), and excited about the possibility of returning to work soon- very carefully. I miss that purposeful time getting up in the morning, talking with students, teaching, managing the library and more. I always feel like a useful person, don't get me wrong, but actual work makes me quite fulfilled. Will continue to take things one day at a time, stay positive, and enjoy life...
I've missed art a little bit lately, so reprioritizing that so that I keep up that the outlet. Enjoying reading still but there are many books I didn't get to during this time... not much of a surprise, my "to read" pile is always growing. I've noticed that the day or two after chemo my brain cannot concentrate on reading books too well. So, audiobooks sometimes work, and sometimes tv shows are the way to go... riding the waves and keeping my brain working the best I can.

A few friends and family have mentioned I need to look into immunotherapy for treatment. It is a hopeful, promising practice.
http://www.cbsnews.com/news/billionaire-doctor-fights-cancer-in-unconventional-way/
Forbes article:
http://www.forbes.com/sites/matthewherper/2014/12/07/here-is-what-60-minutes-didnt-tell-you-about-the-billionaire-who-is-trying-to-disrupt-cancer-care/?&_suid=14181084332750052996140671893954

From a hospital website: Examples of immunotherapy drugs include interferon, IL-2 and Ipilimumab, which can be used for treating melanoma; Herceptin which can be used for some breast cancers; Erbitux, Vectibix, and Avastin which can be used to treat colo-rectal cancers and others. There are many types of immunotherapies that work by a variety of mechanisms.

I'm already on Avastin as part of my chemo regimine, so I'm already receiving one immunotherapy drug- two doses left in the next round of four. http://www.avastin.com/patient - this is the drug that has that nosebleed side effect I've commented about before. I'm quite grateful that my oncologist prescribed this as part of my regimine.
Shall see what my oncologist believes is the best course of action for long term drug treatment after I'm finished with this round of chemo and radiation treatment. I have many thoughts on this to be honest and working to stay positive. Already on Tamoxifen for deterring breast cancer from returning...

Thank you for all the support - friends and family, so grateful. 

Results plus Thoughts Randomly Coming

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

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

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

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

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

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

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

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

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

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

PET Scan and Waiting

Feel like I'm in this waiting game... My first PET scan in August was not fun and I was anxious about having it since my breast cancer diagnosis in March... I still have the memories of the revealing results after that first PET scan - third cancer, operation and more... so this one's no fun either. Waiting for results, shall see and share when I'm honestly up for sharing.
PET scan... hope no one has to deal with it themselves. Seriously.
The place I returned to today has the nicest nurse who quickly, carefully put a line into my inside elbow which was there for the next hour and a half. Having a needle in one's elbow area is actually worse than the line in my hand I've grown accustomed to for the past 11 chemotherapy cycles. Something no one should get used to by the way.
She was quite comforting as she tucked me away in a special room and instructed me to drink a LOT of distilled warm water (I finished it all)... Then a second person came. I described this last time I think as well. He has a special restricted room with special prepared glucose with a dose of radiation... he quickly told me about the process:
1. Drink a lot of water.
2. After he puts to glucose into me, wait 45 minutes to 1 hour for it to run thru my blood stream.
3. When I'm notified over the intercom that it is time, evacuate my bladder and then push the special door button to release me. (don't you love that word use? I chuckled.)
4. Carry all my belongings to the CT machine area, lay down and put my arms above my head with my fingers laced...
5. Lay still for 20-25 minutes.
Then he pushed some saline in the line in my elbow and ran to get the special needle and pushed the glucose into me as a radiation alarm went off the whole time. Not disconcerting at all...
Then wait. Note to self: next time, yank the blanket out right away, do not sit feeling cold shivering and drinking warm water. Reading books is good but being warmer is important. Don't forget to make the chair comfortable as well, lazy-boy chairs are popular in these clinics.
I had a bit of an issue having to get back into the CT machine, after two rounds of radiation, the machine is not my favorite place to be... 20 minutes of quiet, peaceful, not moving thoughts... got thru it. After they pulled me out the last time, they came over the intercom with a warning to stay still and not move that they were not done yet, 5 more minutes. I stayed still and figured out afterwards that they were going over all the scans to make sure there wasn't any extra scans needed before I was released. (English wasn't the strongest in the clinic but passable.)
The nurse met me in a small room and pulled out the needle and zipped over to dispose of it in the secure room. Then gave me a bandaid with the instructions to flush twice when I use the toilet and avoid pregnant women and children for 4-6 hours as I will have residue still in me...
Walking out I ate a banana (did I mention I had to fast for this test and was shaky/starving?) and zipped over to my favorite juice place in the IFC mall- Genie Juicery to pick up a treat for myself. Then went home to snuggle with my sweet dog and nap a little bit... then attended the chanting class I'm not too fond of but it is healthy.... then decided it wasn't enough to get juice so after family dinner, my husband and I went to see Mockingjay at the theater, that was a treat for the both of us. Actually walked 10,000 steps today! That's a big turnaround from Mon/Tues... Grateful to have a few fun things to do today... and for stamina... grateful to only have a few days to wait for results (I hope.) Now, I'll look forward to listening to the next episode of Serial in the morning...

Thanks for journeying with me... day by day.

Riding Energy Waves

Well, that last appointment with my oncologist didn't sit too well for me but oh well, not always going to go as I assume. I've certainly learned that with this journey.
Right now I'm doing math. 1+4=5 1+2+2=5  1-1 dose + 1-3 doses+ 1-1 dose+ 1-2 doses+ 1-1 dose= 5 more treatments instead of one left.
So I have the PET scan this Wednesday. My oncologist expects results back by Saturday when I have what was supposed to be my final chemo treatment. But I got more information.
If I have clear scan results, which I'm expecting but also accepting that you never know, my oncologist was pretty blatant- he said, "I hope you understand, I want you to have one more full round of treatment. This will not be as you were expecting. Instead you'll have two before your holiday and two after the holiday." Hmm. Not thrilled at all but he did say since the beginning that he expected to have four rounds of chemo and then adjusted it to three and then contingent on a clear PET scan I'd have a fourth round. I'm glad I get to escape for a while. I'm glad we planned/paid for this trip back in June before changes occurred again with this third round of dealing with cancer. Anticipating a holiday is a good distraction. Shall see how things go.
So far on Saturday after chemo I was w-i-p-e-d out. I hung out for a little bit with my family after my husband and I came back from chemo and listened to a great audiobook for a little bit and then slept and slept and slept until almost dinnertime. Then I was up-up-up until 1am with my brain in full gear. I took advantage of full brain waves by prewriting blog posts for my "baby"- The Styling Librarian blog that I've written for almost 3 years now- I started it almost 3 years ago on January 1st, 2012, a few months after that we decided Hong Kong would be our big life change. So, most of the blog I've written here in Hong Kong. I love reviewing books, interviewing authors, sharing random videos, writing about life's adventures and more... it is a good outlet and when I've prewritten posts, I'm much calmer and happier and productive. I've been a bit behind for the past few months with prewriting my posts... never have missed posting my regular things and I honestly take great pride in maintaining the blog. I am so grateful for all the connections I've made to authors, illustrators, bloggers, fellow book lovers and more. So... hooray for my stronger brain waves night that allowed me to prewrite blog posts for a while. It was a relief.
Sunday- today- has been a little odd. Sleeping in, walking the dog, missing other Sunday routines, and reading- I completed a novel, an audiobook and just finished reading an incredible non-fiction picture book as well. Plus we had a good amount of family time and watched a Star Trek flick as well... Never know how each day will go.
Thanks, as always, for journeying with me. Grateful, as always.

Reblooming orchid- makes me happy to watch the changes each day. 

Back around the corner

Right as I've found my energy and had a good three days in a row... here comes chemo... Le sigh.
Enjoyed getting to appointments, running errands, having special dinners, and even seeing a musical performance... I am happy with the outcome of the week... plus I enjoyed a few audiobooks and am in the middle of a fascinating one presently.
It is so hard to tell when I should keep my face mask on. I actually wore the wig for over 6 hours, that's the longest time for me yet. It is quite warm wearing a wig for so long. Glad I am able to do it though since soon enough I'll have to wear it for work.
Tomorrow- two dose day... shall see. Will see if I'm feeling strong afterwards enough to go see a movie... never know reactions.
PET scan is next Wednesday. Need to clarify how long it will take to get the results... Last time I had it in August it was a complete blur, just know it will take more than a few days. Last time I received a lovely bound booklet with an accompanying CD. Shall see how it goes.
Had to sort out all my vitamins, supplements, and medicine... happy to have it organized but it took over 30 minutes to sort it all out. I'm taking so many more pills nowadays.
I'm getting to the point where I'm anticipating the holiday that we preplanned/paid for back before diagnosis... I'm really staying positive about getting permission to go away for a little while... Bringing along the calendar tomorrow to see how to get extra chemo treatments in as needed.
I tried out a Yuen Method specialist on Thursday. It was an interesting process that I'm still thinking about. I received homework at the end- to watch for the next time I'm upset/angry and step back, take two long breaths and look at the situation as an observer, see how I react then. Hmm. Interesting. Know I've done that before but shall try it again.
Thanks for journeying with me, day by day... grateful for these "up" days and gearing up for whatever comes next...

Ears a listening....

Going thru the days with a little purpose, focus... taking things carefully.
Not living in fear but awareness over the fact that I've fainted a few times and I do not want that to occur again nor do I want to be alone if it occurs.
Side effects are slightly less this week. I'm feeling a little stronger. I think... but I'm not pushing myself. My stomach totally is not thrilled with chemotherapy, it won't calm down... but I'm still consistent with medicine/natural treatment. Not so thrilled with rice water but I'm drinking it. Nose isn't happy with the medicine, dealing with many bloody noses but not terrible, will look forward to this lessening eventually.

A wonderful friend suggested I listen to a podcast and then I read about it in a magazine and then another friend told me I'd enjoy it...- that's hard because I love my audiobooks and was in the middle of a really good book. But today I was lost in the podcast- Serial - http://serialpodcast.org/ - now complete and waiting til December for the next airing, fascinating... what research and detail involved.

I'm still trying Yoga Nidra which is peaceful. The friend who has been so sweet coming every week to help me with this practice suggested I listen to a new group, so I am- Edo and Jo... Lovely voices together. http://www.edoandjo.com/kirtan-alive A little bit like the chanting and mantras I've been getting accustomed to in the chanting and yoga class.

My hair is growing out- what there is of the hair... shall see if/when more hair begins growing. Kiddo is amused by the whisps that are growing out. I'm watching and noticing more grey than brown but what's new about that? My body has been in crisis for a while, of course the hair will be grey...

Treatment this Saturday will be 2 doses... and then I'll have a PET scan... then one more official treatment the following Saturday. Shall see what happens after that...