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.

Weekend time

This morning was hard and then good.
I got to CancerLink and enjoyed a little yoga, picked up my ticket for their "Celebration of Life" at some big stadium tomorrow afternoon. Shall see if I have energy to go. Bringing husband and kiddo along if we do go. Had to duck out of yoga early, much to my chagrin as I would have enjoyed catching up with a few friends after class. Same thing will happen next week, sigh.
I had an appointment with my oncologist. That was hard. By the time I got to the appointment I felt like... I was the walking dead. Almost as weak as when I was leaving the hospital after the operation. Didn't enjoy the MTR ride over to the clinic, an elderly woman pushed me during entry (rarely do I get pushed) and I got a seat anyways. Letting go.
At the clinic I got my weekly blood draw but it hurt more. My poor veins are darn tired of needles. And much more sensitive after all these months of chemo, etc. Funny how that is but I was warned. I found out that I was running a low-grade fever and had lost 5 pounds in one week. 5 pounds. So many of my friends struggle and worry about weight, that is, getting weight off. But to lose 5 pounds in one week made me want to weep. I've worked so hard to put that weight on. I was at a healthy weight of 127 pounds (not anywhere near what I used to be) and I was proud of that weight. I don't like going below 130 to be honest because I bruise like crazy when I don't have any cushion on me... and I've seen more bruises this week. Sigh. Now hovering below 122...
My oncologist suggested putting me on an IV drip right then. I told him I wanted to go eat a burger and spend time with my friend. He made me promise to drink more yucky sports drinks to boost my electrolites (I tolerate Pocari Sweat here, too much sugar but at least I know it helps) and drink a lot of water. He's also concerned because my nosebleeds have started again, the chemo makes me have nosebleeds so it isn't much of a surprise to me... Just dealing...
I talked with my oncologist about the looming PET scan. I told him I was concerned about the rush to have one. He told me he just wants to get me strong and recovered from chemo at the moment and we'll talk about the PET scan in June. Ok. Sounds good. I think. I told him I'd prefer to avoid the PET scan until school is over. What's the point really of finding out before? I have stayed positive about things but honestly, I can't even consider any treatments/operations, etc before we're back in the states. I want his opinion and certainly plan to have the scan before we leave but... meh. Not in a rush... peace of mind? I'm better putting it off and getting stronger during June. Shall see what he says once I'm feeling better. He's very respectful but also isn't hesistant about speaking his mind about what he knows is best for my care.
I'm to watch my fever. If it goes up or if other things come up, I'm to go on antibiotics twice a day. I already have the prescription. Shall see. Fever isn't down yet. I checked.
I was able to meet up with one of my favorite people here in Hong Kong and have lunch and then book shop together. Spending time with my friend Tanja is always a "picker-upper" for me. We visited a book sale and I got 25% off a few books for school, woot. Wasn't too impressed with what they marked down 80% but was happy to have the energy to hang out and book chat.
Looking forward to work next week. Only 4 days of school and then a long weekend. My husband is excited because he's going to scuba dive in the Philippines. I'm happy for him. Looking forward to spending time with my kiddo too, just the two of us...
This afternoon I read a website that had some really good advice for people who are dealing with metastatic cancer like me. The American Cancer Society article is called "When Cancer Doesn't Go Away". Trust me, I can hope for it to go away but am honestly just realistic as well.
http://www.cancer.org/treatment/survivorshipduringandaftertreatment/when-cancer-doesnt-go-away
Appreciated the advice and thoughts.
Damn cancer.
Going to read and relax and drink many fluids.
Thanks for journeying all.