Waking up happy can be a good thing

Birthday girl with her cupcake sweater- couldn't get the cupcake
earrines in the shot, sigh... Hi to my great brother-in-law as well...

So, it has been almost two months since I began my immunotherapy, tumultous months with the stinking feeding tube added in.
Last week my friend, thanks Catherine!, found me the powdered version of pocari sweat, happy day, saves money, reduces plastic bottles, thrilled... I'm still taking in Gatorade as well... I'm so happy to be avoiding dehydration for two weeks now, it is a relief. NO bags of fluid going into my veins, hooray!! If I could say the same for the constipation and coughing I'd be thrilled but I'm working on those.
I was able to go to work all this past week which I know isn't a big deal, but for me... it was. I so enjoy having enough stamina... and also am resting at the end of each day a huge amount.
It was fun to see family this week for my sister's birthday (Happy Birthday Rachel!!!) and was weird at the same time to not see my parents after consistently during the week after having them help me so often during past weeks. Grateful for their support.

Cheese!

I'm thrilled it is December but also overwhelmed since my kiddo has a big birthday next weekend... he's such a big boy and growing so fast. So grateful to be here for it...

Today was a good day. Sure I still needed a mid-day rest. Sure I still am exhausted. I did get Nivolumab this morning with my friend Catherine. We had a good time chatting... it was the first time in a while I could actually have a sustained conversation, such a relief to be able to communicate! I also got to find some medicine that my naturopathic dr. suggested for the cough and stamina as well.

When I woke up this morning I had the realization that I now can sleep on my back again. I've been unable to do this for months- since the tumor in my back created such pressure I was in pain even lying down that way. I am taking Advil on a regular basis as my gastro-enterologist recommended, might be that reason... BUT Could this mean that the tumor is shrinking? I should hope so. Nivolumab, do your best please. I'm trying to pave the way!
I'm trying to eat. I can take little baby/bird bites and water in between and can get 1/8 of what I used to into my body- leads to a good takeaway container but still I'm not "eating" like I'd dream of... shall see. I do now weigh in at 122 pounds... super exciting, over 120 again is a start towards healthy!!

I'm working to take quiet time, meditation time, restful moments. Sometimes that's hard because all I want to do is zone out and watch a tv show, but I'm trying.

Love my mom...

I found out that my oncologist wants to do a PET scan, sigh. I was really hoping for a CT but ok. I'm scheduled for this Thursday to get one done. PET scans suck to be honest... fasting, isolation, needles, but I'll get thru yet another one- 2nd one here in Oregon, 5th one overall I've had...
The following Tuesday I'll see my oncologist and go over the results of the test. Here's hoping for good ones. I won't go alone (my mom will come, she is very good at hearing EVERYTHING said). Never again will I go alone to an appointment with PET scan results. Learned my lesson on that last August.

Well... going to rest again now. Read a few good books recently and am loving an audiobook I'm listening to... I was stuck in another one and not enjoying it- solution? Take a break.

Wishing everyone a wonderful holiday season. Hanukah snuck up on us, can't believe it begins tomorrow night. Kiddo is thrilled of course. I'm just struggling to wrap presents for family in other states and think out mailing them, etc. It was fun to sort out what I bought for the holidays since I hadn't thought much about it since July. I do plan gifts way in advance...

Thanks for journeying with me!

Whack a Mole, Results Not Terrific

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

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

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

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

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

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

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

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

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

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

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

Chemo reactions, careful monitoring

Was feeling a little styling... Tuesday.

Second to last time I watch my body react to chemo. While I was getting the infusion, I felt more and more fuzzy in the head but still cognitively with it, just slowed.

Tuesday I felt still somewhat hopped up on the steroids, allergy medication, and anti-nausea meds but I did take the prescriptions I was told to... Tuesday afternoon I hopped in a taxi after working a full day and rode to the ferry terminal. I met up with my wonderful friend Megan and we headed to Discovery Bay for a librarian's meeting. It was an interesting one but my eyes struggled to stay open at certain moments to be honest. I enjoyed discussing books and making new agreements for the Golden Dragon Book Award program we're organizing and also eating dinner and chatting with wonderful people.

Wednesday I got thru the day but barely. I came home to a refrigerator that was broken. Oh, did I mention that last Friday our washing machine was broken? We got a replacement on Tuesday. No rest for the weary. We tried different things out and are hoping that the fridge will last the 2.5 months we're still here in the apartment, shall see. I napped and watched shows and calmed my mind.

Thursday was a little rough on the coughing. I thought it was easing up but not quite... feeling better this evening though I think. Worked all day and then hopped in my friend's car and headed to another school. Met up with my wonderful friend Tanja and we co-presented at an IB PYP session on author inquiries. It was fun to co-present and bounce off one another's ideas. Grateful I had the energy for this.

And now... Friday. I'll get thru it. I'm missing a writers group Thurs. evening that I really enjoy but had to draw the line and be wise. Friends are looking out for me. Megan made sure I we rode a taxi home both Tues. and Thurs. Smart woman, I was dragging...

Side effects have been expected and then honestly a little surprising as well. Stomach issues abound as always but aren't as terrible as chemo week #7-12... Pains are there from coughing but I think the anti-inflammatory is really keeping things in check. My brain was really foggy on Wednesday. One student who is brutally honest (but caring too) told me "Mrs. Alvarez, I notice that you're making mistakes and are a little confused today, you must be tired." I simply said, "I am tired, you're right..." (I couldn't remember a student's name-- remembered it the next day no problem though!) So... taking things gently. Day by day. But honestly, I don't feel like I'm acting like I had another dose of chemo for the most part. Getting along. Living life. Having fun. Seeing friends. Working. Appreciating what I've got. Snuggling with my kiddo and husband. Dealing with a dog getting older (sob). Waking up grateful for another day. Doing qigong breathing exercises in the morning and night. Missing yoga but will get back to it... Grateful for this life.

My sister shared an interesting article.
http://www.timesofisrael.com/israel-india-team-up-to-cure-cancer/

Thanks as always for journeying with me... Appreciating the support.

Friendship Boost

Been a little quiet but that's never bad.
Still watching the daily episodes of The Truth about Cancer - they're just fascinating. Good watch each day, my favorite was today- Nature's Pharmacy. Taking notes and reflecting on what is popping up on my radar. For example, I want to learn a lot more about iodine and why it might be good for anyone to add to their supplements but especially for cancer patients. I also think I need to add more watercress, seaweed, arugula, beets, wheatgrass, and kale into my diet... I also feel like I'm understanding a little more about treatments, therapies, diets and more. One thing I'm thrilled that has become a practice for me is that I'm drinking a tea made of mint/green tea/tumeric/ginger throughout the day. I think it really is helping with nausea and many other issues that pop up with cancer patients. I'm also grateful I began oil pulling with a teaspoon of coconut oil in the morning and at night. I was pretty tired of it last week but I guess I got over the "hump" and am in the routine now again without feeling frustrated about being stuck with oil in my mouth for 10-20 minutes. Anything to avoid mouth sores and keep my gums and teeth healthy. My scalp isn't healed. But I think it is starting to get a little better with an antibiotic my oncologist put me on and his liquid treatment. For now, I'm sticking with his plan because I do see a little progress. Hair is continually coming out more... but it doesn't freak me out, just part of life. I also find it funny that what hair there is on my head is growing out a tiny bit. My nose isn't terrific but is still under control with bleeding, etc... I won't mention my stomach much right now except to say I lost a little weight, sigh, but am still trying to eat well and keep balanced with food intake. I'm wearing a face mask in public and I'm being super careful. I glare at mosquitoes that buzz by me... (seriously, I do)
Sleep isn't perfect but popping my feet up the wall each night is an appreciated routine and my body seems to be getting accustomed to it.
  

I am feeling quite boosted by my best friend Sheli's visit. She arrived yesterday afternoon. Today is normally my "bad" day. I was grateful that I woke up crazy early and was able to say goodbye to my loves before they ran off to catch a plane. Thank goodness Sheli is a completely relaxed person who doesn't put any pressure on us to accomplish anything. Instead, I was able to get back to sleep and get moving after a few hours... I still wasn't up to tip-top form but I was surprised to realize that I only took one anti-nausea pill instead of my normal one every four hours... naps are regular and accepted, my dog is sweet and snuggly, and being able to laugh, chat, and walk with Sheli around my neighborhood was just lovely.
Missing my boys... hoping they're well and having a blast right now in Beijing. I know that there will be days where there is no wifi connections so will chill and look forward to an update soon.

My determined look I guess, can't get a smile out at treatment...
This was Thursday- three drug day...

This line hurt. I still feel where I'm bruised in my vein in my hand.
It is odd but I'm just monitoring. 

Cheese! Sheli is a fabulous walking companion...
So grateful she's here...

Recent art I did...
I am enjoying creating something once in a while that I can color in...
coloring is so soothing for me presently!

Thanks for keeping up on the journey. One day at a time, grateful each time I wake up... even if it isn't the greatest day...

Not so muddled thoughts

Taking breaks actually creating a little art has been nurturing. Glad I'm trying #Inktober where you create art with ink, doesn't have to be something complicated, each day in October. I like daily challenges like this, gives me a little focus and let's face it folks, I like focus... if you hadn't noticed that about me already.

So grateful for Give Forward fundraiser, relief is palpable. Thank you x 1000 to my friend Erika for pushing me to be open to gifts and to all who have gifted with words, support, and financially. Overwhelmed but appreciative....

Chemo effects from 3rd session of 12. I'm not sure how I feel about things at the moment. A little different than last two session reactions which I'll accept, it was a two medicine session so each week will be a little different. I was surprised to have not so much nausea. Instead I'm dealing with upset stomach, scalp freaking out, three crazy itchy mosquito bites from 4 days ago- they're easing up a little bit thank goodness for calamine lotion I'd forgotten I bought- normally I get welts with every mosquito bite but with my healing being inhibited by drugs the biggest welt actually got a blister... crazy, and a dry bloody nose - not bleeding- learned that I should... not blow my nose! Fabulous....

Honestly I'm also dealing with a little anger. My best friend was relieved that when we Skyped I wasn't as positive and happy as usual. I won't go into what made me angry but it is justified and I'm figuring out how to manage addressing the conflict so that it won't hang over my head. Not worth my worry a few years from now, so just trying to address and deal. As many who know me well I do have a few control issues and have worked to learn how to let go a little... sometimes that backfires.

Chatted with my wonderful life coach and got the BEST advice from her, besides figuring out how to get my bottom into the chemotherapy chair every week, how to calm myself at night... this is something I already have done in the past but I just hadn't done it in the evening! Are you ready for what gave me a good night's sleep for the first time in almost two months? Drumroll... Legs up the wall. Yep. Place a yoga mat on the floor next to the wall, put your legs up the wall with your bottom against the wall... hooray. Deep breathing, meditation, and a little quiet thinking helped me relax. 20 minutes later I quietly climbed into bed and actually fell asleep. Amazing. Much better to try this vs. resorting to sleep medication! Learned that if you have high blood pressure you can't do this though, careful my friends...

Enjoying qi gong still... appreciating the energy focus, health focus, and friends who attend...
One friend told me tonight that I should investigate answers to some of my health issues online... so grateful for the reminder. Found that my scalp issues occur with so many people who are dealing with chemo. I know I'm not the only one but wow to the resources once you start looking. After sorting thru many, I appreciated the tips for scalp issues here:
http://cincovidas.com/chemo-side-effect-red-painful-welts-on-my-scalp%E2%80%94what-can-i-do/
But of course will check in with my oncologist on Saturday about new not-so-fun symptoms as well...
Also trying out drinking brown rice water to help my stomach calm down a little. Shall see how that goes now that I'm going to drink it three times a day. I do so love drinking horchatas but this certainly wasn't. No added sugar and a little cinnamon does not a horchata make... but shall accept shortcomings if I can feel a little better.

Here are a few of my little #Inktober sketches, makes me happy to pick up a sketch pad again. Funny that I was never far from one all through my life until I was around 22... found a similar sketch pad to one I used to scribble in all the time, nice to have a different outlet for expressing thoughts. Just having fun with pen/markers... haven't felt like drawing on my iPad, etc... a drawing pad is enough for me!

I love my dog... watching her peacefully sleep is a new way for me to pass the time, always so grateful for her companionship...

I used to have a hedgehog... still slightly obsessed about them but I'll NEVER own one again. They are disgusting creatures... *I loved my little one and treated him very well... but NEVER again. There's a kid's story there, I'm working on sorting it out in my mind presently...

A special friend requested that I try out drawing a horse in honor of her birthday... used to draw unicorns all the time as a kid, I was one of those unicorn daydreamers, but this was... ok.

I love "Dot Day" each year and a friend asked me if I'd created my dot for this year yet... no I hadn't... grateful she suggested it, was fun to think about what represented me presently but also it was odd because the picture reminded me of my school's logo...

A good friend and I shared a birthday, she brought me flowers when we spent our birthday afternoon together... loved them, good challenge to get on paper.

Chemo Reaction- A little documenting

Hope...
for future patients: preventing metastisis- which I'm presently dealing with:
http://www.businessinsider.com/scientists-cancer-spread-health-research-2014-9

So, I realized I didn't share what happened on my chemotherapy day 1 of 12 day.
Here it goes... 7 hours long...
I checked in at my oncologist's clinic and was immediately weighed and had my temperature checked. I lost two kilos which was really upsetting. Didn't think about how I had cut all my hair since the last time I was on the scale, so perhaps some of the weight loss is from hair??
Vampire time- blood was drawn and analyzed.
I checked in with my oncologist who lectured me about losing weight, this is an ongoing conversation... and also chatted about how my blood is, told me many side effects to the chemo drugs that were going to be pumped into me, discussed other things as well. I forgot to ask why he "upgraded" me from Stage 3 to Stage 4 cancer but found out later it is because of the metastasis.

Then I went to his back room. I've had my blood drawn here so often but I always said to myself, at least I don't have to do chemotherapy. Thought that one too soon.
There are comfortable chairs there. Lounge ones... good thing too since I had to sit for 7 hours. The medicine is operated through a machine plugged into the wall. You can't walk around with it!
My wonderful friend Diane who is an incredible support came around this time... she was there the entire time, we have such fascinating conversations... So grateful she was willing to be there, funny that I brought along books and magazines, never opened them.
The nurse was so lovely. Kind. Patient.
I warned her. "I don't like needles. I have to pee a lot. I'm sorry if that creates complications." She was so easy going every time I had to go to the restroom. Just stopped the meds. Removed the line going into my hand and put a cap on the tube until I got back...
First I got a line in my left hand (which sucks, I'm left handed-- has to be that way since the breast cancer and lung cancer both are in my right side).
Then saline was pumped into me to get going.
Then a little medicine was pumped in.
And a little more...
Then around 10:30 the first chemo was pushed in.
Then around 11:30 the next chemo drug.
Then a little more medicine was pumped in. (Benadryl, etc.- only thing that made me wince, that darn medicine stings when it is going in!)
My friend Susan showed up at 1pm. She wanted to visit, bring Diane lunch, and see how I was doing... plus give me a ride home afterwards, so grateful for her time. Super supportive friend.
Then 1:00-2:30 the final chemo drug. It was fascinating to meet a lab technician I'd seen for a year working in the back room on blood analysis and find out he was a Chinese medicine doctor certified and practicing in Hong Kong. He provides his service to my oncologist's patients- herbs, acupuncture, and more... wow. I'm waiting this week to see my side effects and then checking in with him on Saturday for my next round of chemo. He helped out my friend Diane which was incredible.
I ate lunch.
I was so ready to go at 2:30 when the saline was pumped thru again.
That was when the nurse began lecturing me. For 45 minutes. Seriously. My friend pointed out that I started biting my nails during that time. Why yes, I'm sleepy, tired of being in a chair, and ready to go go go... I don't want to hear about side effects now! But for fourty-five minutes I worked hard to concentrate on all the side effects and careful practices she talked about. I thought to myself, I'm better at reading this stuff, please just give me the paper... but I listened too since she would often offer her sage advice as she went over the paperwork. Unfortunately, she forgot to give me the packet (oops) she popped it back into my file record booklet so I will probably run by the clinic this week to pick it up.

After some lectures, I decided to add organic chicken back into my food plan, just treating meat as an appetizer but doing it to get more protein... I'm eating a ton of food but losing weight. I know cancer has a lot to do with it but still, doing what I need to do. A beautiful friend dropped off chicken broth (bone soup) for me to eat... will add some brown rice noodles to it and have tomorrow. So grateful.
I also enjoyed breaking the rules and eating a piece of whole wheat bread today (gasp) with avocado and smoked salmon on it- what heaven it was to eat! So...  there's the update I didn't include in my last post.

Monday- 2 days after chemo was pumped into my veins... I'm having a harder time. Honestly, I'm fatigued, gave in and admitted I was nauseous and took pills, and didn't have as much get-up-and-go energy today. Considered it a feat to eat my meals, shower, and welcome my husband home from Vietnam. He completed the mountain marathon in 12 hours! So proud of him.
I wanted to go to this workshop in the evening after dinner and thought I had enough energy to go and return. Learned a hard lesson... I attended this essential oils workshop for around 45 minutes and realized I was done. I needed to go. So they put a drop of oil on my wrists- Joy- smelled like my grandma, lovely, and I headed out. I wasn't thinking my best. I decided to go to ride the MTR home. Figured I could find a place to sit down and it was only 3 stops. Rush hour. Dream on Debbie. So, I got there, had to stand but found a place to lean and got thru two stops. Then I blacked out/fainted. On the MTR. Many people worried. One woman helped me stand up. I slightly collapsed again and people helped me exit the MTR at my exit. The lovely woman who helped me up walked me over to the guard's station and asked me what I wanted... to call the police? Heck no. (But that's a normal thing to do here.) but I said I needed to sit down. They pulled a chair out of the station for me and for five minutes I cooled off. (Was dripping with sweat.) I then realized I didn't trust my energy level so I called my husband and he came to get me. (Welcome home honey!) I was grateful to be home, humbled, and upset. I chatted with my life coach and discussed decisions, what happened and why. We agreed it was probably a combo beyond just being exhausted- I had started wearing a face mask and felt it was suffocating me. She pointed out that breathing in my CO2 probably wasn't good. I need to practice wearing it at home for a while. I had taken the nausea medicine which can get you dizzy... And I should have taken a taxi home. Lesson learned. The hard way but at least there were wonderfully helpful people around who cared enough to get me to a safe place where I was monitored.

Have snapped a few pictures lately... figured I'd share a few. You can see the clinic and even the meds... not fun but part of my days 11 to go...