I still see me...

I've been thinking about things...
During my quiet times where my body is saying, "No, don't get up yet, you're not ready."
A fleeting thought at one moment this past week was that I felt so frustrated to not be me that I know anymore.
Every once in a while I come across this thought.
I miss my stamina- gotta work on building it up again.
I miss my voice. Sometimes I just can't talk the way I want because I'll go into a coughing fit.
I have learned to accept, adapt and appreciate most of the time.
Then there are other days where I just wonder where am I? Am I still who I was before my cancer diagnosis? How do others see me? I know many many wonderful people have told me I am not just a cancer patient. I am someone who has many interests, passions, and ways I exude energy. Do I still? I feel like sometimes I'm living in the shadow of my past. So. At this time, I had my phone with me and I hunted down a few pictures I liked of myself after we moved to Hong Kong but before my diagnosis. They made me happy. Then I came across that picture I took of myself on a conference day recently... I still see me. I see myself in everything I do. I see myself in my patience I've learned to use more consistently. I see myself in the hope I have for the future. I still see myself in my determined actions and love I share with others. I'm a little wrinkled around the edges some days. Weaker. I need to be careful in ways I never had to before but I'm still me... It was refreshing to have this low moment I could pull myself out of with a little reflection. I did honor the time with a collage of the pictures from before diagnosis and the picture of now. I still see me through all these pictures... I sometimes had low quiet days then too... hunker down and read for the day days... curl up and watch shows and movies with family days, relax on vacation days in the hotel room or in a lounge area...  I love life and appreciate all my memories...

This past week was ok. Saturday was Nivolumab day- was hoping to go to a conference after the infusion but realized it wasn't a good idea... Sunday I got to see a very special friend in the morning and then I rested a lot. Only had work Monday/Tuesday. Was able to work all day Monday but Tuesday was a no-go morning but after a few hours (3) I was able to head in and teach classes and speak for a few seconds at the staff meeting without coughing attacks. (looking into allergy medicine next... shall see if it helps).
Wednesday I woke up shaky... I was really nervous because I was going back to my gastro-enterologist and it was really stressing me out. I went with my parents and son. My dad and kiddo entertained themselves while my mom and I waited a long time for the appointment. I thought there was an infection there, reassured me many times that there wasn't... Hmm. I give the wait to the fact that the doctor cares a lot and takes his time with each person. So when he came into me, he had me lay back after we talked for a few minutes. He started moving my feeding tube. I yelped, cried, asked what he was doing- he was tugging, twisting, and turning the tube. No warning. My mom teared up on the other side of the room. Seeing her tear up made me calm down for some reason... He explained that he was loosening the stoma area. That the clamp that was putting pressure on my abdominal wall and stomach wasn't necessary as much anymore after 5 weeks because there was enough scar tissue there now. After wiping away those tears and giving it a few minutes I could feel a drastic difference. 5 weeks of pain a little more explained. The doctor requested that I start using the plunger in the evenings/when it is harder to feed myself with simple elevation. Then he told me to drink Gatorade thru my feeding tube to get the fluid and electrolytes I need vs. going to get a fluid bag push at the oncologists. He said "less needles is good, right?" I've tried. Finding I'm doing ok. Euch to Gatorade. I miss Pocari Sweat from Hong Kong... a lot. Apparently Uwajimaya has it- shall visit quite soon!

I went directly over to the oncologists though and checked in with the nurse who agreed about the Gatorade and did one bag of fluid... and took yet more blood. My white blood cell count is still up and a puzzle to her. She said I must be just finishing some bug off and need to be patient as I heal.

I was really wiped after two dr appointments and was glad to get home to my husband. He and the kiddo had some fun together after the sweet boy was stuck an entire day from one dr. office after another... even with all my dad's support- no fun... but he did have a "busy bag" filled with books and entertainment...

Love my sister

Thursday I woke up and did my morning feeding routine but could tell it wasn't time to move yet. I pretty much didn't move beyond feeding myself and drinking loads of water til 2pm which was frustrating but I accepted that's where I was at. Eventually I pulled myself together, went with my husband and kiddo and got to go to my sister and brother-in-law's home for Thanksgiving. I found myself really quiet and reserved. Every time I talked I started coughing pretty quick but it was wonderful to be with everyone.
I actually ate a little food (baby bites, slowly) and loved it. Happy day.

Today I've had three beautiful visits- two by Skype to Hong Kong- man I miss those wonderful friends- and one lovely visit at my house... I'm so lucky to be surrounded with love and support here in Oregon. Also, I'm lucky that people watch and pace themselves with visits with me without staying too long, even on Skype. Very grateful.

Thanks as always for journeying with me...

Family shot from Thanksgiving.

Surprise visit and riding waves of energy

Another person who can get me to smile at the chemo appointments.
Perhaps it is because of the drug I'm getting now that I can smile more, hmm.

My brain is packed with randomness. So, you've been warned.
It has been a bit of a packed week. But also a week packed with downtime.
On Friday last week I got home and was resting after work. Every day I come home and rest after work. Only way I survive each day, in fact some days I don't last the whole work day unfortunately... I have to leave an hour or so earlier because I was so fatigued. Grateful I have the flexible hour approval with the school district.

Wonderful down time with friends... so grateful.

So last Friday my husband requested I come into the family room. He sounded a little off. I'd chatted with my sister earlier and she was going to work out... Then my husband said my sister was coming over. This puzzled me to no end. He said she had a surprise with her for me... After she arrived, my best friend, Sheli, called and asked if I'd received the essential oil she mailed me. I admitted I hadn't and asked why she was calling. Went to the front door and there she was... with the oil and a hug. I'd won a Sheli lottery, wonderful to have the bonus surprise time with my treasured friend.
Sheli was there in time to go with me to get Nivolumab on Saturday and meet up with my sister and another wonderful friend and go stay in Manzanita, OR... beautiful house and peaceful place to retreat and relax. All organized by my wonderful sister, so grateful.
Then we had a week of work together, including a holiday on Wednesday... Tuesday my son and I were committed to volunteer at Oregon Food Bank and Sheli was kind enough to volunteer with us. I found that over 2 hours there was a little too much physically. Grateful I spoke up and had a chair to sit on. But I was pretty drained at the end. Our Mother-Son book group had finished the book Among the Hidden by Margaret Peterson Haddix and agreed volunteering at the food bank would be a good concluding activity. I honestly was really tired of carrots, twist ties, and plastic bags by the end, but we all knew that we were doing good.
My husband got sick on Monday... he thought it was food poisoning. I still don't know. I do know on Thursday I was feeling a little nauseaus in the afternoon and wasn't sure if I was sick with some type of flu and my anti-nausea meds that I take twice a day could be covering up symptoms... so we left work early and I went to bed for hours...

Right after Sheli surprised me... happy crying. What a friend.

Sheli dealt with me having energy at times and then being absolutely flat other times. On Wednesday we had special time together and what did we do? Sheli organized me with projects around the house I didn't even realize needed to be done but now I'm just so grateful for all the things she did... Even when I wasn't around she solved little electricity issues we had around the house... and she is not an electrician... AND she helped me with some grants I was writing and working on at school. So grateful for all her amazing support... from afar when she's in Alaska and we're visiting weekly and  when she visited and cared for me last year when I was in the heavy duty chemo rounds in Hong Kong and now... what an amazing friend. So lucky... so lucky. Plus she got to see my family- and she is part of our family and is loved my by parents and sister...
I am really working to be patient with my energy and still finding it challenging to read and follow thru on what I need. I really do know that I cannot just push myself as I did last year. I'm not at that point anymore.
Sheli left Thursday night. Sigh.
Got thru work on Friday and then rested Sat. and Sun. all day. No pushing myself at all. Enjoyed the few glimpses of hours where I did feel stronger and got basic chores and such done. Watched many shows... Kiddo was sick for a little bit on Friday evening so it worked well for the whole family to chill this weekend...
Had an interaction where I met people for the first time, very nice people. When they met me they both did this head tilt that made me wonder... and later when I asked my husband, 'do they know about the cancer?' he said 'yes'... Ahh. The head tilt. Got it. Very nice people, grateful to meet them.

I learned this past week that besides weighing myself daily and checking my temperature, I need to also report any issues I have with my stomach- my Dr. was quite concerned when I called for advice about how to take medicine for constipation if I was having diarrhea. She calmed down and wasn't worried once we talked things out but she also lectured me about how a side effect of Nivolumab is colitis and how she would need to put me on another drug to help with that if I continue to have problems... sigh. Haven't had issues since then... Shall keep close eye on my body. Even though I've felt fatigued, etc. I haven't had a rise in temperature...
I've now had 2 doses of Nivolumab. Every other Saturday is when I get it which is helpful... I also see my doctor around 5 days before... It is interesting that I get double on the blood tests for the chemo. Things add up, as I've said before, I feel like oncologists are secretly vampires...

So. Here's to a week of wonderful friendship time, good resting time, family time, good support, volunteering, working and more. Sheli called me "unstoppable" but honestly, I'm just riding those waves and trying to be really wise about what I can actually do.

Thanks as always for journeying with me...

Listening to Fatigue

Appreciated these 40 questions to quiet your mind.
Mind quieting is a good thing.
My mind is a busy one... needs quieting here and there.
http://www.marcandangel.com/2015/08/05/40-questions-that-will-quiet-your-mind/

Appreciated reading about another cancer patient who is also dealing with a "can't be cured" diagnosis and her fatigue. I'm working hard to listen to my body and understand when I need a break. Today we were at a street fair and I went thru that shakey/sweaty feeling where I knew I just needed to lie down. Can't lie down in the middle of the street... so we caught a bicycle cart ride (free, woohoo!) back to the street we parked on.  Was quite grateful that the street fair has that as a bonus. **It was darn hot out and I wasn't sure if I was just overheated vs fatigued... was simply listening and acting on what my body was asking for... Sad because I was hoping to get to a favorite bookstore and wander a bit more but I'm listening. My husband drove us home and I rested and felt better after a few hours.
Here's that blogger's post on fatigue:
https://patcadigan.wordpress.com/2015/08/07/cancer-fatigue/

So, I'm doing ok.
The tumor isn't the scary one that cannot be biopsied.  Still is a terrible cancer tumor and such but at least they can get a sample.
The doctor's office took a few too many days (in my opinion) to tell me the results of that urine test and schedule the biopsy. Taught me I need to be really assertive and call/email right away.
I'm going for that biopsy of my adrenal gland on Tuesday August 11th. Last year I had a biopsy of my lung on August 13th- our wedding anniversary... I'm grateful the 11th isn't a "big day". Enough of those. Huge operation 2 years ago on my birthday sucked. No more.

Well.
Getting thru the days. Enjoying time with family. Appreciating being able to simply drive over to my sister's home, parent's home, friend's homes and visiting... even Skyping when time zones are closer is a beautiful thing...

Saw my acupunturist on Friday, I love my time with her. A healthy presence and I feel like what she does helps... I also recently got my teeth cleaned and checked and I don't have to deal with a skin graft on my gum, I fully recovered from the problems I was dealing before. I also found out I was able to stay away from getting more cavities, hooray for determination and maintenance. I'm very careful with my teeth, always have been... I'm also trying a new nutritional supplement program to help my immune system out... so far my body is mostly tolerating it. Happy to be doing something proactive vs all reactive...

Thanks for journeying with me....

Thank you so much to all companies that funded free rides... was a relief to catch this!

You're turning the corner, I know it is hard

Love my lunch duty time because I can see
such beautiful living things.

I haven't thought about writing much recently. This week has been a little challenging for me. I'm so grateful I had the previous week off. This past week I had 4 evening activities. Two were "goodbye" dinner events which are really hard for me. I don't enjoy goodbyes. I feel socially awkward in them usually. These two events though included some really interesting conversationalists and also some dear friends sitting close which made them special... and a little harder in a way. I was pretty much plugging my way thru each work day with patience. I love school. I've mentioned this before. I love students... they gift me energy and love...

For now though, I'm just fatigued. I've been dealing with some disturbing sleep patterns that I haven't had before where I fall asleep but can't sleep more than an hour at a time without waking up. And falling back to sleep is harder that I've experienced before. And the dreams I'm having are weird and vivid where I'm working out someone else's worries and concerns. For example: One dream I've been having for multiple days is about a woman who did testing on whales of some sort and realized that the testing was emotionally disturbing them so they were beaching themselves. I dreamed about the aftermath where she was heartbroken and having to defend herself. ... so just weird. So serious.
I'm taking it easy and napping a little bit since I'm in the middle of a beautiful long weekend.

Student led conference included science electricity demonstration.

My kiddo is having a terrific weekend... a little time with me and a chance to go to a movie together (Tomorrowland- pretty heavy handed with message but decent enough flick) and enjoyed a little time together but he's mostly away at wonderful friend's homes at sleepovers. Glad my husband and I organized them. Kiddo told me today he just cannot wait to move home to Oregon but he regrets that all these good friends he has now will be left behind... glad he's so reflective, good kiddo.
My husband is away in the Philippines scuba diving, really happy for him... glad he has this opportunity. Miss him though, been a long while since we've been apart for days.

I've had a little time to watch the Hay House World Summit movies... E-Motion, The Shift, and The Tapping Solution are the ones I watched today. Such interesting creations reflecting on the emotional state... appreciate them. They're free for around one more week. Hooray for free healthy resources. Grateful.  https://www.hayhouseworldsummit.com/lessons/the-tapping-solution/
http://www.thetappingsolution.com/

Trying out tapping actually started to distract me from my frustrating side pain and stomach pain I've been consistently having. I also started having back pain, perhaps because of all the bed rest. I went to get a massage (one more prepaid massage left!) and the therapist said to me "so you're getting fat". I chuckled at this for a while. Told her that I actually am trying to gain weight and that my Dr. is concerned that I'm not gaining weight. She was astounded. Funny how someone who works on bodies would state this or be surprised. I carry my weight in my legs, that's where she was looking. Still funny to me. Told a friend about it and she told me about how when she lived in Ghana it is traditionally the greatest compliment for someone to say that you are fat... that would be quite the thing to get used to!

Went to my oncologist yesterday and he told me I should be feeling better. That he thinks I've reached the turning point of this last round of chemo... shall see. Love that he also said "I know it is hard for you" and did the heavy hand pat on my back on my way out of his office, he's a good guy, shall miss his support. I can tell that I'm better than a week ago but the pain in my side is really distracting me, can't just ignore it sometimes... and no way to massage the area.

Was interesting when someone asked me the other day if I ever slow down. I didn't realize I was giving that impression of busyness anymore. I'm still blogging and working but really, I'm so much slower and more purposeful with where I put forth my energy... not sure why it came up. Maybe the person was trying to measure herself to me? Doesn't really matter. I told her that this whole diagnosis experience has made me slower and careful about pacing myself...

My dog can still hear loud thunder and lightning.
There have been many storms recently. Poor girl.

I'm working on the transition moving home. My important things were to connect with an oncologist in the US and get insurance for the few months I'm not covered by either job. I figured out insurance now and also contacted the oncologist I feel confident going to see... I have a load to "to do" things to do here before we move like getting a background check done with the Hong Kong police to show I'm clear when I'm back in the US... also I have to deal with various financial things- taxes, retirement paperwork, and more. Trying to just pace myself and get things sorted carefully. Things will work out eventually...

A friend shared this link on Facebook, really interesting to see which organizations own organic brands... kind of mind boggling.
http://www.washingtonpost.com/graphics/business/organic-brands/

Well, thanks for journeying with me. I'm taking things day by day as always... reaching deep in my toolbox for what will help me. Happy I am trying out tapping again. Happy days to all...