Friday, December 26, 2014

Holiday. More than just cancer

Appreciating this holiday. I can look away from the disease and have a little forgetting about cancer at times which is beautiful. Vacationing with friends is such a wonderful experience since we can have wonderful conversations, great peaceful experiences, and our boys have fun entertaining one another instead of needing parent entertainment. (Single child in household sometimes means parents are the entertainment.)
We are at our switch now. Been horrible Internet so far, we don't think the next place we are flying to even provides Internet (this resort had meh connection that completely died a few days ago.) sneaking in this quick post enjoying the fact that for the first time in 14 weeks I don't have to be poked with a needle. Two more right after returning but that is ok. 
I painted my fingernails. Was getting more upset and honestly obsessed by how more and more of my nail beds were  infected/weak underneath. Not that painting nails makes everything right but instead it calms me a tremendous amount to look at something that pains me (yes, started feeling sharp pains on and off in fingertips and toes) and see something somewhat pretty. 
Only had to talk about cancer with a few of the locals who were kind and worried. English speaking is good here, especially in comparison to Hong Kong. One woman bought me some local super fruit and made me a smoothie with it. Shall be investigating it further even though it didn't taste terrific. 
Thanks for journeying with me. We will miss our friends who head back tomorrow, we are off on another adventure tomorrow in another area of the Philippines. I've had a week of ups and downs with energy so hoping will just continue ups and not push myself too much. 
The fruit is at the top and one snapshot of me at resort restaurant. Hooray for hats, hair still growing out but I'm not ready to share yet. Figure when I can look in mirror and feel confident then I'll be free outside with head coverage. I see a tiny bit of my hair curling though a little just more grey than brown so far. 
Happy holidays and New Year to all. 

Friday, December 19, 2014

Update Squeaking in #14 and Heading OFF

My kiddo's art, surprised me. Love it.
So excited for the holiday!
Happy that I got into work for three days. Think that I've gotten over the weakness stigma that I was judging myself with for taking sleep medication- what a godsend it is. I really needed sleep Wednesday night after having one of those "can't believe I have insomnia it isn't the first day of school for goodness sakes" the night before...

I've really missed my coworkers. Many leave mid year, mid term, etc... it isn't that they don't love Bradbury, just the life of teaching in a school filled with many expats (many locals as well). I was so grateful for my supply teacher/substitute, she was so wonderful, organized the library with a new set of eyes, got projects done that brighten up areas that needed brightening, and took care of my wonderful staff and beautiful students... So grateful I could simply walk in and teach Wednesday-Friday. SO lucky I am. And my school.  So it was terrific to be back. I chatted with someone and agreed that the true test of my energy will be in January when I'm coming back after treatment on Saturday and work a whole week. As long as I don't feel overtaxed or such, I'm going for it, I'm working... BUT I'm watching myself carefully. Today I had to run to catch a bus and still had energy for that but never know. Grateful for every minute I have.

Debbie, how did the kids/staff react to your hair/wig? All support and respect from staff... they're lovely. Kids are brutally honest but I was ready. "Mrs. Alvarez you look so different!" "Mrs. Alvarez, what happened to your hair?" "Mrs. Alvarez, your hair looks weird." "Mrs. Alvarez I missed you, I know you've been sick, what was wrong?"
My reaction? I said to the wig/hair comments: "Well, this is my hair now and I'm getting used to it, it is what I have and part of me." They seemed to take that well enough. My answer to the what's been wrong, here's what I said to my students: "I've been sick for three stinky months. I did not like it. I'm not quite strong like a superhero yet but I am strong enough to see and teach you, so I'm happy to be here." The kids who pushed further got a "I really don't want to talk about that personal information." - I've learned over the years with sweet kiddos that you don't leave the door open for further questions, just flat out say what you feel and they'll stop. I'm respectful and redirect the conversation afterwards. Some of my students know I had cancer, they think it is lung cancer (because that's what it was diagnosed as when I left work, that's ok, do they have to have those details?) Some of my (honestly) favorites really learned the truth and handled it quite well and just asked some thoughtful questions about how I was feeling and told me they missed me... I only saw half my students this week, will catch up with the rest after the holiday.

#14 Treatment sucks as always (what's new, right?). My concern about my half-covered-with-a-bruise hand wasn't necessary since I'm alternating hands. Keeping up with the topical bruise medication... One of my favorite nurses was quite pleased with the vein she used today. Who knew veins would be exciting. My hands aren't happy presently as I'm using much much much hand sanitizer but I'm also using some terrific hand lotion from many thoughtful friends who just knew what I needed. Only one drug this week... and flying out. Can't wait. Can't wait. Talked with my oncologist further about what would happen with treatment... two more- those Saturdays after the holidays. Then a BREAK. Then radiation. He said "We hope to get rid of the rest of the cancer with radiation." I'm trying to be confident about going back into that tube. It was painful and I'm a little concerned about how my throat/bronchial tube will react to getting zapped... plus the past radiation area will be touched as well which isn't thrilling. Shall see. Then after radiation, if I'm strong and can handle it, "clean up chemo"- two more treatments just three weeks apart and then shall see if there is further prescriptions he wishes to give me. So I see a light. I see 2 more chemo rounds, radiation and 2 more chemo rounds- that means 4 more times I'll be stuck with that long needle in my hand/arm. I can accept that. I'll work hard so my body can also accept it. I'm feeling stronger this week. A little wiped, a little excited about the holiday, and happy about seeing students and staff. My administration has been respectful, bluntly honest and concerned, but respectful. I've hit them with another thing that I'll share soon enough and they've been kind and patient. I'm so so so grateful for the situation I'm in. I read about others dealing with cancer who don't have the support I do.

Grateful for all the support online, wow. I feel so lucky and loved... and grateful...

I subscribe to Soul Pancake- YouTube channel- have subscribed for a long time and LOVE it. L-O-V-E it... when I have time to watch it. I came across a new series they're putting out, below are the first two. Short 3 minute-ish videos. So honest, raw, humorous, touching... love them.
Highly Evolved Human:

Also appreciated this 60 Minutes report on Mindfulness- my mom sent my way, thank you Mom!! :)

Finally, I also read this post by a Cancer Survivor/Thriver- 13 Ways I live my life with purpose after cancer:
I agree with every single item on her list but disagree. I live my life with purpose during this triple hitter cancer experience, it is imperative to have goals and be purposeful. My husband told me the second day after I returned to work how happy he noticed I was. How much more active I was than other days... Today was a harder day (treatment sucks). I enjoyed work but was honestly grumpy and a little snappy during/after treatment. This is due to leaving my safe cocoon... I've picked myself up by looking at happy "stuff" that refocuses me to the positive... Can't live in that negative. Finding my moments...

Feeling the love from my students....

Get well card book given as well... so touched.

Wednesday, December 17, 2014

White Blood Cell Increase Focus and clotting frustrations

Grateful for this crane gift from some parents at my school.
Very touched. Beautiful...
Told my husband today I'm really tired of getting stuff put in my body that is poisoning... Frustrating. I know that there is progress. I know this is important. But I hate seeing my blood cell counts all dropping. I really didn't enjoy getting a shot in my stomach to increase my white blood cells. I wonder how they'd be if I wasn't taking supplements and eating so healthy... hmm.
Read this, made me feel pretty reassured.

Had to be at my oncologist's different clinic for treatment this past Friday. There was one perk, the toilet. They had two toilets right there next to the lazy-boy chairs where you sit for treatment. So if you need to go to the bathroom you don't need to be disconnected from the treatment line. I always am concerned about getting disconnected from the treatment line because once my vein collapsed after one disconnection time...  Unfortunately, even though I got permission to get treatment in my other hand due to bruises and a hand that isn't happy with the 12 treatments from before... my right hand's vein now looks like it collapsed... the top of my hand is so blue... my nurse told me that I needed to treat it like a bruise and not worry. Ok. Shall see. Grateful that my right arm didn't swell from the medicine since it was a risk with lymph nodes being removed. But if only my blood would clot properly... shall see.

I'm certainly in countdown mode for the holiday, looking forward to work, looking forward to relaxing as well. Other things are starting up as well and I'm not quite seeing the light at the end of the tunnel with this treatment, oh well. Patience is a virtue and I'm hoping to come out the other side stronger and happier. With some hair growing out preferrably.

Enjoyed my first day back at work. Enjoyed catching up with students and staff. Have missed so many people... Having insomnia the night before didn't help... so wrapping up early to sleep... if possible, shall see.

Hope everyone celebrating Hanukah had a great first night, I also enjoyed the second night with kiddo just now. Had a great birthday celebration with him this weekend as well. Grateful for many friends helping with the event. Went thru kiddo's closet tonight and pulled so many things he's grown out of. Shocked how many things he's just had filling drawers and closets that he knew he'd grown out of... he's nervous about my next focus: going thru his toy cupboards...

Just a quick entry. Quite excited about family trip. Made some huge decisions and actions (good ones I think) that I'll share about when I can. Thanks for journeying...

Friday, December 12, 2014

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...
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...

Tuesday, December 9, 2014

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.
Forbes article:

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. - 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. 

Saturday, December 6, 2014

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:
Had enough to ask my oncologist this week, here was my list:
-PET scan results
-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.

Wednesday, December 3, 2014

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.