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.

Perhaps oversharing?

Warning: This specific post isn't for those who are reading to check up on me. This is for those who don't mind a woman oversharing and complaining a smidge... maybe more than a smidge. Men... not exactly for you. My poor husband has heard it all and feels sorry for me, but that's part of his life with me, the oversharer... spare yourselves...

So, for a while now I've been thinking about nursing my son. I'm sure that's what others think about when they're dealing with the aftermath of operation effects and chemotherapy, right? No?
Well... here I go with sharing too much x 2 today.

So, nursing. I was one of those smarties. I thought to myself, "I've nursed my son for 16 months, I'm preventing any chance of breast cancer, woo hoo!" (little did I know 8 years later...)
Eight years later when I received my first diagnosis (cervical cancer) my first thought was, "Thank god my son is already here." well, maybe not my first thought... but I was so grateful my husband and I already had a happy, healthy child. So grateful.

So, for those moms who have nursed their children, do you remember when your boobs felt heavy, ready to pump or nurse? And do you remember ever feeling that for more than an hour? two hours? As teachers, some of us have that challenge of the "must pump!!" moment but you still have 3 classes in a row you must teach first.

Hmm.
So, why the heck is my mind backtracking eight years?
Because for the past stinking month, my right boob has felt like it was crazy engorged. To that point where I'm ready to scream "OW!!!" Well, sometimes I do yelp... I think it is a combo of a few things:
1. Lymph node removal- drainage is screwed now
2. Surgeon who removed my lower right lung cut into the underside of my breast to get to the lung (think that's the camera incision), also he cut a long incision across and almost into my breast for the lung removal portion (I think). The scars are healing but still a bit painful sometimes. Quit taking tylenol/panedol a week ago. That poor breast didn't need to be cut into more than it already had with the lumpectomy.
3. Radiation- this poor boob had already been thru enough in May when I went in for round after round of radiation. Poor thing doesn't know what end is up. My oncologist offered anti-inflammatory. No. I was taking that and nothing happened with the breast... nice thought though. He's told me "wear sports and supportive bras"... certainly am during daytime hours, made the mistake once of not, OWWWW.

So I walk around with what I describe as an engorged, painful breast in addition to the center of my chest burning with pain (assuming it is the cancer/healing from lymph node removal)... in addition to feeling scar tissue form... oy. I feel very lopsided when I look in the mirror. I've asked a few poor girlfriends if they can see a difference when they visited. They said "well, now that you've pointed it out..." - hah. I share too much sometimes... right?
Shared too much yet?
No?
Well here goes more then...

I'm going on goodness knows how much sleep today. I'm exhausted. Last night I was reading myself to sleep and realized I was wide awake still at 1pm. Oops, closed the book. Tried breathing, counting, peaceful thoughts. Nope. Opened book and continued to read. Then 2pm. Then 3pm- finished a book, LOVED it, didn't help the sleep predicament. The last time I was up ALL NIGHT was when I thought I had lice in July. Uh oh. Jumped up in realization at 4am. Sprayed my hair with these healthy oil stuff and combed my hair for 45 minutes squinting, looking, and checking- repeat times goodness knows how many. Blech. Really made me appreciate the short haircut. Nope, no lice. Yuck. BUT my scalp was freaking out. So itchy. Not sure if it is because my hair is curling back in as it grows a little bit and making it itchy when I lay down on it?? Not certain at all. But I was freaked out. IE no sleep. Thank goodness I brought back to Hong Kong the stuff that could immediately provide me with peace of mind. Yuck. Plus... my hair is falling out. Not clumps. But I'm pretty sure more than the 50-100 strands that can fall out daily- but of course it is more visible in some ways now since it is shorter. Hmm. Chilling out and enjoying hair while it is there... short and easy.

So, I'm done with my oversharing for the day.
I already went to my acupuncturist today. He worked on some energy healing and refocusing of my mind = redirecting from worry to letting go. Appreciated it but basketcase/exhausted one that I am... he made me cry- which is ok. I'm also trying his herbs, shall see. Will show ingredients to my oncologist but my oncologist already gave his approval for herbal medicine for a different Chinese medicine practitioner... so I'm not as concerned about that than I am all these other vitamins/herbs I have to bring in the list of and get permission for before I begin taking them.

I am going with wonderful husband to the local hospital today as well. Letting go of worries and concerns that are out of my control. Shall see how this appointment goes.
Thanks for bearing with me... To those that thought that I overshared, sigh. I warned, right? #gototopofpostandadddisclaimernow

Preempting Hair Changes

Part-way thru the cut...

Grateful that I talked to experts, a few survivor friends, and read blogs and advice sites for people dealing with chemotherapy and side effects.
I've mentioned a few times that I've read about how patients who have longer hair are advised to get it cut short to help with the transition to losing hair/going bald...
Decided to do this before my first chemotherapy appointment. That appointment is this Saturday- 5 days away.
Sophie, at Tony and Guy in Central is one of the best hair stylists I've ever experienced. (And I'm really picky as a curly haired person.) Really appreciate how she handled today- I know that it wasn't just hard for me to get the hair cut... she's been invested in my hair- helping it grow, getting it to a style both of us agreed worked well for me, and now had to go thru cutting it. This was after last year when she flat out told me she'd never cut my hair short in a random conversation we were having...
So, I nervously asked Sophie a bit ago if she'd be willing to help me with this not-so-wonderful situation... Of course she said yes... She's one of those that is comforting and ridiculously talented simultaneously. I also asked my friend Amy if she'd come distract and take pictures... she's a wonderful friend that staged an intervention with another dear friend the first day I stepped foot in a community center here in Hong Kong and helped welcome me and sorted me out with doctors, hair stylists (introduced me to Sophie), and more... I appreciate her friendship tremendously. Amy came prepared with funny anecdotes, interesting things to chat about, and a talent for photographing the whole thing...
Now it is done.
Documented.
Moving on.
I think it is a lovely haircut. Not what I would have ever chosen in a different situation...
(damn cancer)
Sophie is on call for when I need to officially shave it off... as is Amy.

Husband was wonderful as always, he first said, "Well, you have your hair pulled back so often this wasn't too much different until you turn around. Almost forgot for a second." - he likes it...

Kiddo was a little tumultuous.... Yesterday I asked him to decide between a few short curly haired pictures... he chose this one:

A friend recommended that I ask him to help with the decision, appreciated the suggestion. I loved the show Felicity and was surprised by the haircut way back then on Keri Russell... which isn't appreciated by many out there but helped me look at short curly hair as a possibility.

When my sweet kiddo got home from school, we caught up and this was his reaction to the hair cut: First not really noticing, then noticing, then saying he liked it, then later saying it scared him, then tearing up and saying he never wanted me to lose my curls and long hair, then voicing concerns about me eventually going bald, then at the end of storytime together saying that he thought it was pretty and goofing around together. I knew it would be up and down and up and down for him. Love my little sensitive guy.

Somewhat of a mohawk style for a friend who suggested it... partway thru cut.
(Hardest part was actually seeing the top part of my hair cut short...)

Facebook friends are incredibly supportive... beautiful people that they are. Many told me the cut brought out my eyes, made my cheek bones more pronounced, and that I should get some fun dangly earrings. Many suggested I color my hair an outrageous color, funny idea but heck no... going to put enough poison in my body with this chemotherapy, no need to put it on my scalp as well. :)

So.
Got thru the day.
(It helped that earlier in the day I was able to go to school to see an absolutely fantastic author visit for my students with Candy Gourlay- LOVE HER BOOKS- Shine and Tall Story- and also had a long wonderful Skype visit with my best friend in Alaska....)
Positive moments keep getting me thru.

*Amy noticed that I was having a few "wow" moments right after the cut and that she expected that I'd have some to share on the blog, yup.... I do like my lists.
Here's a few things I randomly thought of since the cut:

1. I need other things to fidget with now that my hair isn't there to mess with...
2. It is fun to touch short hair.
3. When it rains, you can feel raindrops when they hit your head.
4. My hair will actually dry in less than an hour now vs. taking all day to dry.
5. I can feel every breeze now...
6. Missing the cushion of hair when leaning back, sigh.
7. Will take adjusting for how much hair product to use.
8. Washing my hair is super fast now.
9. Short hair is stinking easy... No need to think about how to style it. Just wash and whoop, you're done!
10. Curls will find their way. Right now every hair on my head is saying, "Oh My Goodness WHAT Happened? I'm FREE!" and they are having a little fun adjusting... curious to see how humidity here in Hong Kong will effect the hair...
I'll watch the changes over the next few weeks until things change with expected chemo side effects kicking in...

So ends my thoughts for today... Glad I have time to reflect. Thanks all for keeping up with me on this....