Friday, November 27, 2015

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.

Saturday, November 21, 2015

A bit of a down week

Had to go to the dr. for pretty much the whole day on Friday. Somehow, I have an infection (something bladder related?) and also I was dehydrated again.
Sigh. How was I dehydrated? I don't know. Really. I'm drinking water all day. Swallowing water has been much easier lately. And today I had a yoghurt... I don't know what's going on but I am still eating slowly but starting to "eat" again here and there which is a relief. One of the nurses today when she was administering my third dose of Nivolumab said that I needed to not forget how to swallow and then corrected herself realizing that I'm still swallowing...

Was really relieved to get Nivolumab today. And then on Dec. 5th is my 4th dose.... then my oncologist wants to do a CT scan to see about tumors, etc. Crossing my fingers. Staying mostly positive... although this week when I was nearly blacking out again because I was dehydrated was really confusing. Glad I got into the dr on Friday and had things checked out. On Monday I saw my oncologist and she brought up that I might be dehydrated but then said that all the lab work didn't indicate it... so I didn't contradict... but now, if I wake up shaking, almost faint, etc. I'm calling right away to ask for a fluid IV push. I've never liked needles stuck into my arms and getting fluid that way does suck... had to get 2 bags yesterday which took 1 hr and 15 mins each... but well worth it for waking up today without feeling faint. I also had to have a chest x-ray to make sure that I didn't have pneumonia or anything, nope, phew. And the feeding tube was part of the x-ray and everything looks "right" with it- good... now if it would just stop sending pain waves I'd be happy...

I have been losing weight. I admit it. I shifted back to the original formula mix for my feeding tube that has more calories and am trying to eat things that might boost calories as well. Going to start bringing drinks beyond water and formula to school again in the hopes that I can stay hydrated and boost my health. Shall see.
My oncologist told me part of the reason the feeding tube hurts me so much still is that I'm so darn skinny that there's no cushion. So everything is pretty darn sensitive. I've noticed that, especially those days when I'm stuck in bed and feel bruised on my hip because I can only lay on my left side and that hip is just skin and bone... Can't wait to gain weight. I remember when we got home from Hong Kong and I was so proud to finally be at 130 lbs, oh where did I go wrong back then? Oh yeah, ding dong tumors...

Thinks I noticed randomly connected to using the feeding tube:
1. The clamp on the feeding tube is really useful.
2. If you don't have the clamp locked and you're feeding yourself, do not cough. Do not blow your nose. Otherwise you are going to get an explosion of liquid and other things from your stomach. YUCK.
3. I don't "push" my food in, I pour it in a tube thing and then have to wait for it to drain into my stomach. If it is the end of the day, it doesn't go so smooth. What normally takes 15 minutes to feed myself takes 30...
4. If I lean back at an angle, my stomach releases air and makes freaky sounds. (I think they're freaky, as does my mom, my husband on the other hand hasn't said a word.)
5. Do not get distracted when feeding yourself. Especially towards the end when you're really just wanting to be done. That's when mistakes happen and your stomach gets the better of you and water spills all over your jeans mid day at work... sigh.

I look forward to chilling out tomorrow with a few very good visits and then getting back to work without worrying people. On Thursday I called my parents and asked them to accompany me home because I just didn't trust how I was feeling... Sigh. My parents helped me for three days straight with visits and appointments and support. Very grateful. This past week was shoddy for my attendance... Monday was ok, Tuesday I left at 1:30, Wednesday I went to a meeting at noon- couldn't move sooner without feeling faint, Thursday I went to work after noon and stayed til 4 and then had parent support... Friday- missed work. Hate how quickly I'm using up sick hours/days that I'd accumulated so conservatively through the years in my district but thank goodness I have them... very grateful.

So... my focus presently is to figure out things (besides doggone dairy) that will boost my calories but won't make me choke or hurt - tried to eat some noodles yesterday. Whoops.  Didn't get stuck/pain in my esophagus but it was close... and as anyone close to me knows, I live for noodles... Sigh. I'll figure out a way.

Thanks for journeying with me as always... quietly getting thru the days.

Really interesting approach to Parkinsons Disease:

Sunday, November 15, 2015

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...

Thursday, November 5, 2015

Tenatively working, very carefully...

Went to a memorial today for a beautiful person. Broke my heart and lifted me at the same time.
I gave in a little to my body. Was concerned in the morning because I was a little too shaky for my liking, so I stayed home for a few hours and then went to a work meeting. It was a wise choice. I needed it... really trying to read what is going on, sometimes it is too hard though.
I've been in a bit of heck for three days. Seem to have turned the corner today.
So. Word of warning my friends. A gross one, sorry.
When you haven't gone #2 in 2 weeks, having the problem resolved can be very, very, very painful.
My oncologist looked like she wanted to put me in the hospital when I told her I'd been constipated for a little too long. She was upset. Gave me prescriptions and I followed her directions. What followed totally sucked. But it worked by the 3rd day and now I'm doing better. NEVER NEVER NEVER my friends, NEVER let constipation go so far. Seriously. I'll just say that I felt like I was giving birth in a way NO ONE should EVER experience. Scared my husband with the pain sounds I had (didn't realize he was home, thought I had a little time to myself to just yell, poor guy).
So, that's enough of that. One of the prescriptions I'm on gives this side effect, so I'll be taking yet more medicine to avoid for the future (plus natural stuff too). Blech. Unfortunately, swallowing still sucks. So so good that I have a feeding tube. When I got the prescription the other day, I tried to swallow the pills. That was hard. Now I'm crushing them and putting them in my feeding tube. Whatever works. Poor body is way too tired of pills, I'll respect that. I'm very tired of pills as well.

But at least my muscles had mostly recovered from the other pain from the feeding tube so they could help me vs. hinder the situation further.
I am sort of feeling stronger. Think I was shaky this morning because of the final evening of heck, feeling a bit better now.
Hoping for a stronger Friday/weekend. Shall see!

I'm very excited for my second dose of Nivolumab this Saturday. My sister will be with me which always brightens my day. A year ago she was with me helping out with chemo treatment in Hong Kong. So happy to be home and a quick text/message/phone call/visit away now.

My oncologist wants to have me go thru a scan after 2 months, which is 4 doses. Shall see. I'm picturing my immune system working the right way and those darn cancer cells dying and tumors shrinking.

Good news? Monday I got on the scale and it said 119. HALLELUJAH! Still gaining weight... Shall see what it is tomorrow. Might be a little lighter after those few days of heck this week, but never know.

Thanks as always for journeying with me. Appreciating the time I'm at work, home, visiting with people... so grateful for every day and all the beautiful support I receive...