So, about this rollercoaster I'm on, I'd like a break now and then please...

Logging for a few days.
So. PET scan was fine on Thursday.
Work was fine most on Friday.
I was up most of the night Friday/Saturday.
I swallowed one pill and began coughing/vomiting and couldn't stop all day. Drank tea. Took allergy medicine... meh.
After going thru that, I wasn't thrilled with Saturday. Received a new anti-nausea med I take every 6 hours now. Sunday morning at 1:30 am I started coughing up blood along with mucus. Very disconcerting. This hasn't really ended yet... yuck.
Went to the dr.
Got two bags of fluid.
They didn't know what to do with me.
I had terrible sleep. Couldn't stop panic breathing where everytime I laid down I'd go into this breathing issue. Still an issue during the daytime.
Called to beg to see my oncologist Monday since I had a sub but she's been on holiday so she actually couldn't squeeze me in since she wants quality conversation time about the PET scan. So tomorrow I go.


PET SCAN results... 30 minute wait while my oncologist reviewed results, could have been good or bad, or both. Yep, both. Received "Mixed Results".

The one good: the tumor on my adrenal gland that was discovered in July shrunk a load, she was happy.

The other things, not so happy.
We did decide to stay the course.
I'll try my best to share what's the worrisome stuff:

1. Might have pneumonia, will get an antibiotic, likely liquid, tomorrow.
2. Mediastintum where I've been radiated/have tumor/been fighting/been cut up/operated there, etc.... is growing, more active. Plus found a new tumor area near the mass.
3. Abdomen hasn't been brought up before... could be cancer in there in the lower right quadrant, hmm.
4. Could also be peritoneal disease which is not something new for cervical cancer patients...
5. I have what's called a "Mixed Response" overall to the Nivolumab.

She also mentioned that she just got back from a conference where they discussed these checkpoint inhibitors, like Nivolumab, and how they're just not as straightforward as we'd like... and to stay the course and be patient. Guess I can do this.
She also mentioned that there sometimes are "pseudo progressors" which also she said might signal that we need to give more time.

Well, plugging away, going to be a little quiet and introspective now... Staying positive as I can. Resting where I find time. Working to get better sleep, here's hoping.
Wishing everyone well,
Thanks for journeying with me.

2 more months I'm going to stay this course, shall see. Every other week Nivolumab I believe, shall see!...

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!

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.

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:
http://www.cbsnews.com/news/fighting-back-against-parkinsons-in-the-ring/

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...

Tenatively working, very carefully...

Well.
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.
Sigh.
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...

No work yet, missed? 1.5 weeks...

Hair is growing!

I love spending time at home, with my dog, with my mom, but really and truly, I really had hoped I'd be back at work this week. I was so wrong. This optimistic nurse on Saturday said we're getting you sorted out so that you can get right back into work come Monday. That did not happen.
I had to advocate for myself in an aggressive manner this time. So, thought I'd share some of the communication... but honestly when I think about it now, it wasn't as terrible.... oh yes, it was... but I didn't have to write everything I did to the nurses... I admit that...

Sunday I felt fully debilitated. I was hunched over in pain. Couldn't stand up straight. Couldn't get comfortable in bed. Was in simply terrible pain. And I was so sick of doctors offices by this point...

I sent this message on Sunday evening:

Me:
The feeding tube is working well, I'm up to the suggested amount of food and water but I am in frequent internal pain. Unsure if the tube is pushing at something inside but I can't walk without being hunched over in pain and I can't lay down without massive painful muscle spasms. The incision site is clean.
Not sure who to contact. Frustrated and concerned.
The home nurse was helpful but did not trim the tube hardly at all so I am taping up a really long tube which is frustrating as well. It is at least 8 inches long.
Would love advice. Children's Liquid Tylenol helped a miniscule amount but I'd like to focus my energy on being strong for the Nivolumab to do what it needs to do. Don't think my stomach muscles have relaxed in at least 12 hours.
==

Then on Monday I had these interactions:

===

Nurse: Hello,
As I mentioned on our phone call, Dr. ___ would like to to follow up regarding the pain from the PEG tube with the GI team that inserted the PEG on Friday. She is not concerned with you taking the Children's Tylenol for breakthrough pain, and encourages you take this as ordered for pain.
You may want to use heat, or cold, to your abdomin to help ease the cramping.
We hope this resolves your discomfort.

===

Me: Thank you,
I know this is more than just discomfort. I've had a hysterectomy, a partial lung removal, a lumpectomy. I've had drains before in me for days. I've had pain before. I'm good dealing with pain. Honest. This is debilitating. I cannot stand up straight. I cannot walk without pain. I cannot lay down without taking 10 minutes to situate myself. This is more that just discomfort. I am very concerned. Please help. Pleading now.
I honestly think someone should actually look at me instead of telling me to use a heating/cooling pad. I depend on my job. I had to take another sick day. I'm very concerned that I'm still stuck in bed.

===
Nurse: Hi again,
I noticed this message because it was under Dr. ____ but the provider who placed your PEG tube was Dr. ____  so I will be sending the message to her team to follow up with you.
Take care, ___

===

Nurse: Hello,
This is P___, RN of Dr. ___.
I am sorry I haven't been able to reach you via phone but I discussed with Dr. ___ and she believes you should be evaluated in the Emergency department in regards to your debilitating PEG pain.
You might need a CT-scan and the GI fellow on call can see you in person there.
We want to make sure you are safe.
___ RN

===

Me: Thank you. I am waiting at the ER. Honestly feel like I'm being punished being sent to the ER for speaking up for myself.
I've never been sent to the ER in the two + years I've dealt with cancer.
The germs and exposure here in addition to wait time for goodness knows how long is not pleasant. I just had chemo/immunotherapy treatment on Saturday. I was told to avoid germs.
But I'm doing as I've been told.
Thank you.
======

Nurse: I am sorry you feel this way Debbie, but we don't know what could be wrong unless somebody lays eyes on you. Unfortunately, at a clinic setting we don't have the ability to see patient for urgent evaluations that your stated pain warrants.
I hope you can be seen soon in ED.
Sincerely,
___ RN

======

Posted this after the ER visit:

Home from ER after 4 hours. Glad I got seen instead of accepting being put off by doctors but man I didn't enjoy the ER much. 
I found out I'm a special case (go figure). I'm 1 in 10 patients who have a feeding tube complication of basically a charley horse/massive pain at the incision area where they cut thru my abdominal wall/muscle/nerve. So pain should subside soon enough (they said 4 or so days) So relieved to have an answer. Pain meds might help. Thanks to all concerned. Just chilling out at home and appreciating my parents who have been thru too many days of my medical mishap lately.

===

So, that was Monday. Now it is Saturday.

Today, Saturday, is the FIRST day I am able to easily get up/move around/have energy/almost feel like "me". Seriously. That's 8 days after the procedure that I was supposed to recover from within 24 hours. Harumph.

I missed work all week including a costume book character celebration (broke my heart to miss), a book fair (I've missed book fairs for the 3 years in Hong Kong and was so upset to miss my first one at my new school, everything went smooth because there's an amazing team/staff who manage it but MAN I hated to miss it...)

Bah. 

Hooray for feeling a little human.

Not fond of the formula I'm on but yesterday I went with my mom to my naturopath and we discussed how to make my own healthy formula packed with greens, vitamins, healthy energy mix, etc. Looking forward to trying out soon. 

What am I dealing with now? Pain- if I cough, heaven forbid. I'm pretty debilitated if I cough. My recovery time from a coughing fit is much quicker though. Not quite standing up straight but MUCH better than before. A mom who has watched me at my lowest and celebrated me getting around smoothly today. Pile up of emails at work and learning to let go once again.
Weight. I'm up to 115 now. Stable there. Hoping to gain more consistently, will see. Crazy to be below 130 in my opinion but I can gain it again... I'm sure I can.

VERY happy to be on Nivolumab. I'm excited and hopeful. Seriously hopeful. So grateful to people who have helped out. Receiving a book on feeding tubes and recipes, etc. last night was a gift, wonderful surprise. Kiddo getting to attend an awesome Halloween party and being so happy... plus his final soccer game today. 

So relieved to count on my parents. Relieved that my husband has a job that is turning out ok. Relieved that the kiddo is starting the after school program on Monday. Hopeful to go to work on Monday, shall see, won't push myself!

I was recommended to visit this feeding tube community:

Feeding Tube support community: (very overwhelming site)
http://oley.org/index.html

Not too much else to share.
Hair is growing out and getting unruly. Love it still but man it is starting to be an afro... want to grow it out for another month or so and then will try out getting a very light trim. Happy happy happy to have hair. So relieved the Nivolumab doesn't make my hair fall out (yes, I'd still take it if I did make my hair fall out, but I'm celebrating having hair here!)

Hooray for hope.
Thanks, as always, for journeying with me...