So I had a really (stinking) hard day...

Today sucked. Seriously.
Statements first:
1. My mom is a genius.
2. I work with incredible, caring, thoughtful people.
3. I need help when I'm starving and dehydrated.
4. I do not think straight and need help making decisions when I'm starving and dehydrated or simply overwhelmed.
Ok.
I woke up and felt nauseaus..
So I took an anti-nausea pill.
I took a shower and had to lay down afterwards in my closet and then in bed. I wasn't feeling terrific. My husband helped me get dressed. He questioned my determination to go to work.
I thought I could handle it with a drink of protein shake on my way to work.
Not smart, stupid in fact.
I didn't realize how far gone I was. Really.
I got to work driving ok but not swallowing worth a darn, only one sip of protein shake.
I've had trouble swallowing even water the past few days. Seriously. Water. I took a sip of water last night and leaned over to do something and felt the water come right back up.
So... I haven't been drinking well or eating at all for a few days. It took me 3.5 hours last night to drink a mug of bone broth.
Today it really hit me.
I walked up the 10 stairs to get into my school and felt light headed. Wasn't sure what to do.
Walked down the hall. Started to have a ringing in my ears.
Saw a lovely coworker and asked her to help me with my heavy 2nd bag and told her I thought I might blackout. Got to the library office and promptly laid down on the floor at the back of the office. Knew I wasn't doing well. Scared and worried many people.
Some lovely people insisted that I come to the sick room to lay down on a more comfortable bed. I started hearing the fuzz in my ears and got dizzy on the way to the office. Sigh. Two people walked me there.
It helped to lay down. One person after another sat with me and talked.
Reminded me that work will go on and I should go home.
I surely didn't disagree but had a hard time letting go.
One person took control. Cancelled the classes I was meant to visit, told me that two people would be helping me get home with my car so that I didn't have to worry about it. I cried. So grateful. I was just worrying about how to get home and deal with the car.
I was driven home by a beautiful coworker who helped distract me the whole time with easy conversation and another wonderful person followed us.

I'm taking Thursday and Friday off.

My mom came over and flat out told me: "Debbie, I thought about it on the drive over. You are terribly dehydrated and the pain is out of control. You must get fluids in you with an IV, call the dr. now."
I called 3 doctors, ended up going to my new oncologist's office. So grateful I did.
1. I now have immunotherapy scheduled for the first time this Friday, no worries about my condition. "Debbie, you are not in a wheelchair with a breathing machine, you're fine to get Nivolumab. Oh hallelujah.
2. The nurse helped me understand about feeding tubes more. I'm over my fears and concerns and stubborness. A friend told me today "sometimes stubborness can be your worst enemy."
3. The nurse helped me get over fears of pain medication.

I got pumped with loads of liquid, it took over 2 hours and 30 minutes to get the two huge sacks of liquid into me. They also gave me a small amount of pain medicine which helped me...
I started feeling a tiny bit better around 45 minutes in... started feeling more human after 1.5 hours. Wow was I dehydrated. I now know that you lose a lot of weight when you're dehydrated. I weighed in at 114 pounds. Started crying when I saw that until I was told about dehydration impacting weight... sigh.

Pain is still there. A little more dull. But shall see with the help of the immunotherapy on Friday. Shall see about the feeding tube. I'm hoping it will be placed tomorrow but I'm aware it is a long shot.

I had an explanation about things that wasn't wonderful to hear but I now understand a bit more about my esophogus... so the specialist last week brought  this up but I didn't understand very well... there is space in my esophogus to swallow. The specialist and the dr both think that it is motility vs mechanics. This means nerve damage (possibly from that last round of radiation in the area) might be affecting my ability to swallow vs. tumors pushing... which means I might have trouble swallowing for a long while even after tumors shrink.
So... good thing to get the feeding tube. The struggle and pain I go thru swallowing presently sucks. Shall see.

So I'm home. Still struggling to swallow. Still dealing with pain but feeling immensely relieved to simply have things a tiny bit sorted and not completely feel like junk. So frustrating to me.
Letting go.

Not the most positive post but got thru this cruddy day with my mom monitoring and helping me out, my dad taking care of kiddo after school, amazing coworkers sending me messages and support, and more...
Very glad to be home. Resting. Looking forward to immunotherapy... my poor veins... but I have a lot of hope.
Thanks for journeying with me...

Well... clinging to hope

Choosing the temperature of the air being
pumped into my hospital gown.

Had the endoscopy and was disappointed. My surgeon decided once he was in my digestive tract that a stint wouldn't stay in place. So nope. No relief from the food hell I'm presently in. He strongly encouraged me to get a feeding tube set up. :( I said no. I'm going to try try try to eat enough when I can eat to maintain and gain weight. And I hope that when I start the immunotherapy drug the tumors will shrink and lessen the pain/pressure. Shall see. Family and I are thinking on creative fatty foods, especially drinks and soups. Shall see...

Serious me... Just a had time smiling at a hospital...

Ever see a hospital gown 

I honestly did melt down for a while last night going through doubts and regrets over my stubbornness and how the feeding tube could have been put in during that procedure... money, going thru the procedure again, etc. Oh well. Debating and hoping still. Shall see. Hoping for that immunotherapy to help me... trying my best to stay positive. Might give in eventually to a feeding tube but perhaps one that is actually through my nose vs. another incision/tube sticking out of my body.

Still heartbroken by cancer taking special people's lives and impacting other people's lives. Made the mistake of watching a inspiring but upsetting movie- The C Word.
http://www.imdb.com/title/tt3568218/

So there's good things happening lately...
1. My husband got a job and begins next week, hooray.
2. My parents are supporting us for a few weeks with our kiddo while we transition day care situations.
3. My son was just accepted into an after school care program that will give him a lot of practice in Mandarin, thrilled since we knew that his knowledge was fading quickly since he didn't have any new practice in talking Mandarin in months. He starts in November and is open to the classes, phew.
4. Soon enough I'll get to go on immunotherapy that will hopefully knock out these tumors... I know it is a stretch but miracles happen, every day.

Hoping, believing, and loving every day I'm alive, even the tough ones...  thanks for journeying with me...

More hope, yes thank you, immunotherapy time is coming

At the technology/Future Ready Conference on
Friday. Had to wear my shirt to show that I'm
balanced between technology and print materials.

So, something happened today that should have occurred four months ago. But I've accepted that we're simply here now.
I saw my new oncologist today.
Got very clear, honest opinions from her. Received hope, hope, hope.
My husband and I walked away saying, "Yes, this is what we need."
Shall see about that one immunotherapy drug that connects to my biopsy/Foundation I testing. It might take some time to get approval for it. My new oncologist is willing to have me get that still. BUT she's working now on getting me on what I wanted to get on 4 months ago: Nivolumab. An immunotherapy drug. It is the one that is in a phase II study for metastatic cervical cancer patients.
 http://www.chemocare.com/chemotherapy/drug-info/Nivolumab.aspx
https://www.mskcc.org/cancer-care/clinical-trials/15-116
She wants me off of Avastin. Said that it isn't really viable on its own and she doesn't find a need for it in conjunction with Nivolumab. I'm honestly thrilled with that.

I am hopeful.
I am grateful.
I am relieved.

Avastin with blue planes? afterwards. The nurse got
a lecture from me and was much more careful and
aware of what went wrong with our last session.
She used a heating pad and did the "drip" on a
different vein. No new bruises, phew. 

My brain MRI led to nothing new (thank goodness!)
My PET scan led to not too much new, although apparently I had some time of a rib fracture on my right side?! Odd information but makes sense where I was hurting for around 3 months on my right side after surgery last August. Apparently there's something that lit up on that side but shall see. My oncologist was not concerned. It wasn't highlighted as a concern.

I'm hopeful.

I do have to go and get the endoscopy on Thursday. Shall see about pain afterwards. Not thrilled. Shall see if the stint is put in. The gastro-enterologist is concerned about the fact that I got Avastin last Friday. He's not sure if I will heal well if there is any cuts internally. Shall see what he decides. I just want to swallow consistently again. I'm on Prilosec which seems to have eased some things in the morning a tiny bit- less throwing up incidents, but still having issues overall. Getting food in as much as I can but I'm now down to 118, sigh. At least it isn't more, I guess.

Bridge on our way back home on Hwy 101.

Friday was a bit busy with a tech conference, a chat with my oncologist during one break, Avastin treatment, and then meeting up for a carpool down to Coos Bay. My friend and I chatted all four hours on our way to Coos Bay, so wonderful... The doctors on Thursday had looked at me with raised eyebrows when they heard my plans for the weekend but I had faith that I'd planned things out well enough, and I think I had... I actually was able to get to the conference in Coos Bay and present on Saturday. I took a lot of breaks that day but really enjoyed every minute possible. Loved meeting up with educator/school library colleagues from around Oregon and also some beautiful, inspiring author friends as well. So many wonderful hugs exchanged, filled me with such happiness... Overwhelming a little bit, but in a good way. Sunday I slept and rested and rode home with my lovely friend who was fine with a quieter Debbie and an audiobook.

So... getting thru the days. Looking forward to a few non-medical, more work focused days. Hooray for them.

Thanks as always for journeying with me.
Here's to hope.

I loved seeing this blooming still...

5 appointments, 3 days, sheesh

Gonna miss my kiddo when I go to a conference for the weekend.
Just finished a good book with him and quickly are going to shift
to a new one... Haven't missed a storytime with him in a while... Even
the days when I'm coughing and unable to read much, we still have our
time together...

So. Yesterday I had to go get a PET scan done and I took a sick day since I knew I'd be useless at work before the scan since I had to fast for it.
The scan is still as isolating as it is in Hong Kong. Similar everything. Scans suck a little more now since I don't prefer to lay on my back since pain is ridiculously bad after 5 minutes. Having to lay on my back without taking tylenol? Very worrisome. Got thru it all just fine. I'm good at staying still. (Guess I have a little practice with 3 rounds of radiation!)
While I was isolated for an hour letting the radiation seep thru my body for the PET scan, the nurse pulled a miracle and scheduled a brain MRI a few hours after the PET scan.
I hated that MRI. I don't use the word too often but MRI contrasts suck totally. First I'm in a head cage and have to hold still while things bonk, buzz, whir, and shake all around. For 25 minutes. Then they injected a contrast into my poor overused vein and walked away. Nope. Not happening. Had to hit the panic button so that I could sit up and deal with the nausea side effect from the contrast, yuck. Got over it. They said it happens to those who are lightweight... Yup, that's me presently.  15 minutes more of laying still. Had earplugs and headphones on. Once in a while heard classical music. Hmm. Not so fun. Got thru it.
So I had to get both tests done for the new oncologist I'm seeing next Monday.

Today was interesting.
First I met the gastroenterologist and discussed my swallowing problems with him. Why not just schedule the stinking procedure? I'm not sure. Oh well. Next Thursday or Friday I'll be going thru an hour long procedure where they'll possibly put a stint into my esophagus. There's consequences, of course. It could slide. Go down into my stomach. It will likely make me hurt for 2-3 days as the stint expands. He only wants it in there for 6-8 months. Said it can create problems if it is there longer. Said that I have to sleep at an angle because I could have really bad acid reflux since there's no barrier anymore once the stent is in place.
Found this brochure about what to do after the stent is placed...
https://www.bostonscientific.com/content/dam/bostonscientific/endo/general/gastro-specialty/eso_stent_patient_nutrition.pdf

Next I met with my oncologist. Had good conversations with her. We went over the Foundation I results and she found that there was a immunotherapy drug that my tumor reacted three ways to "genomic alterations detected"... so she got permission from me (of course) and is now applying to get it for me through compassionate care.
The immunotherapy drug is called Temsirolimus.
http://www.torisel.com/how-torisel-works
I know it is normally connected to renal cell carcinoma. It is not on my oncologist's normal radar. She said it was very good that we had the Foundation I testing because it brought to light a drug that has a little promise. It is in a 2nd trial trying out treatment for gynecological cancers/cervical cancer and has shown promise. I'll take that hope.
https://clinicaltrials.gov/ct2/show/NCT01026792
Shall see how long compassionate use application takes. I'm still seeing the new oncologist on Monday and also another oncologist on Thursday.
We also discussed other things, liquid versions of medicine, especially tylenol... Unfortunately the Tamoxifen I take is liquid form with the flavor of licorice added in, YUCK. I HATE black licorice. I HATE the seeds as well... So I'll crush that pill.
Handed her my paper work for my Advance Directive... it came in the last Hong Kong shipping package... Good to get it sorted out and make sure the hospital knows my wishes.
Grateful a friend is helping me with paperwork and such... I'm in the process of gathering what I've already got... wills, etc.

Eating is such an issue.
Had to fast yesterday for the PET scan and afterwards met my mom and had a delicious sandwich. Unfortunately around 20 minutes into my slow eating process things got... blocked up and I couldn't figure out what to do. Had to lie down at the restaurant in a booth. Blech. Took around 25 minutes or so to recover but felt like crap and barely had any interest in dinner. Needless to say when I weighed in today I'm down to 119.5. :( Very unhappy about that but will continue to try. I'm drinking protein shakes thanks to my husband making them for me in the mornings. I'm slowly going about the days. Barely able to drink a mug of warm lemon water first thing in the morning. So odd to adjust to. But I'm trying. Dinner time is a little better. Today at lunch I had delicious soup but could only get in the broth. Sigh. Shall see. Got noodles, a little chicken and more noodles in me at dinner tonight. Better than I've eaten for a few days. Thanks mostly to my mom's cooking!!

Have another Avastin infusion tomorrow. Grateful my sister is going to be with me. I love my family. So much. I'm so grateful to spend time with them. So happy I'm close by now... Makes it so apparent to me how much I missed them last year... and how many people helped be my family in Hong Kong last year. I miss those beautiful, supportive friends...

Went to the best yoga instructor ever's class yesterday. Appreciated her advice on how to help my back, throat and eyebrows. Working to not raise my eyebrows so often. I never noticed how much I use them til now and she pointed out that it adds stress that's unnecessary. Also learned about some chair poses that should help me, give me more energy... Boy I've missed her classes. Happy to sneak in one again...  after the PET and MRI it felt good to do a healthy action.

Gotta do a crazy face too mom! :)

Thanks as always for journeying with me...
Finding promise.
Holding hope close to my heart and being patient, very patient with myself.

A Little Hope? Yes, thank you.

Loved special sister time... My curls are starting to poof out!
Love each and every one of them.

Had an ok day overall. LOW energy. Caught myself falling asleep during something I found fascinating, frustrating.
Work was ok.
Went to radiologist. LONG appointment.
This is a doctor who doesn't give up.
She doesn't want to radiate any time soon. She really wants to wait since the tumor is exactly where I've had radiation before... she's concerned that the radiation won't work well and will actually further aggravate my esophagus... I understand why she's concerned and honestly appreciate it... even though I also have that attitude thinking, "darn it just zap the heck out of those tumors already!"
I told her how upset I was over the stagnant course of treatment and within an hour she found a new oncologist who is providing me with another bit of hope.
I have to go get yet another PET scan tomorrow. Oh boy. Hate those when it is at noon, takes 3 hours and I have to fast 6 hours in advance. Blech. But at least there's something happening! I also have to get a MRI brain scan soon.
Possibilities for immunotherapy are there. Shall see.
Found out there might need to be a stint placed in my esophagus... will see a specialist Thursday afternoon and find out more about that. Yikes.  Hadn't heard about getting a stint before. Glad to have a doctor who covers her bases and knows what is going on. Saw a scan of my esophagus, there really looks like it is closed up partway down it...
I appreciated getting the suggestion to sleep more at an angle to see if that can help all my swallowing/coughing issues in the mornings. Here's hoping that works. My parents passed me a pillow and my husband picked me up a few more pillows as well. He referenced The Princess and the Pea when we looked at all the pillows piled up...
Really grateful for the appointment. Amazing how much more relieved I felt after the appointment. Give me a little hope people, that's all I ask...
My radiologist even called me later in the evening to fill me in on the referral. Love how she works and thinks, really appreciate having her part of my medical team...
Caught up with my favorite massage therapist the other day, was so refreshing and helpful... Grateful.
Less pain as well.
Going to qi gong classes on most Mondays and even get to see a beautiful friend when I go to class... good incentive. Really enjoying this instructor even though it is very different from my past classes.
Shall see how the rest of the week goes.
Thanks for journeying with me...

PS My love and prayers go to the Traller family. Heartbroken after learning the news that Nathalie died last night. She provided so many with a beautiful light of energy, love and hope. She has touched so many people and will be remembered through future years... The advocacy and fundraising for ASPS and children with cancer hopefully will help future children who have this diagnosis and others. Although noone should ever have to deal with cancer. Let there be much more research for rarer forms of cancer....

Birthday and Pacing Myself

Lovely yoga time with my friend.
Special entrance to the fitness club.

Well. Already wrote this post and everything was lost... rewriting is a little brief.
Days have flown by.

Birthday treat.

I'm alive.
I'm swallowing food, mostly, mornings are hard but by dinner I'm doing better. Couldn't swallow my supplements this morning.
Today was a little challenging.
My body reminded me to stop. right. now. today when I went to a conference.
I enjoyed a morning workshop, presented about creating a reading classroom community and booktalked 70+ books in 55 minutes, and then I enjoyed watching wonderful authors receive book awards and share wonderful thoughts... After an hour, sitting in a chair was not agreeing with me. Very frustrating. I got up while the keynote speaker shared. No resolving pain or exhaustion. Went and found a couch on the other side of the building. Laid down. Took about an hour to feel ok. A catering staff person brought me water. Another person asked if they could call anyone. Then they gave me lunch early... I ate a little bit and felt a tiny bit better.

Special birthday flowers from a friend.

Special birthday flowers from family.

Went and said hi to a few beloved authors and quickly got in my car and drove home. Felt strong enough and wasn't in as much pain/exhaustion by that time. Rested pretty much the rest of the day.
Got thru the past 9 days ok. On Monday I saw a genetic counselor (mostly a waste of my time, useful for my family hopefully) and also my naturopathic dr. He didn't have much to suggest for me with the swallowing and such, just wants me to get to another oncologist to get a second opinion, that's happening in a few weeks.
Enjoyed work even with training interruptions. Appreciating not just being a cancer patient there. I'm a valued staff member. Most of my coworkers know how I am with the medical situation but they don't dig too much, just a good caring group. Love that kids are smiling when I come in the room now to teach... Also appreciated a birthday serenade from a class of first graders- good friend made sure people knew it was by birthday... I shared it with anyone I was walking around with, never been one to be quiet about celebrating my birthday.

Birthday dinner time with my love.

Enjoyed family dinner time. Went to Pastini's and actually ate everything on my plate. Including tiramisu cake...
The next week is full of medical stuff.
I'm seeing a radiation specialist on Tuesday and Thursday I see a gastro-enterologist and oncologist. Then Friday I get Avastin again.
Still learning how to read my body and be patient with myself... since my body seems to be changing, I feel a bit unpredictable.

Love my present from a former student who runs Cranes of Hope.
Lovely blessing for my car.

Thanks for journeying with me as always...

Well Darn. That explains a little.

I just adore my guys...

Today is Yom Kippur.
Today is my husband's birthday.
Today I couldn't swallow.
Seriously.
I've had trouble swallowing for weeks now. Keep saying I'm having trouble. Had nausea because of it I think.
So.
I got up to prepare to go to services for Yom Kippur this morning with family.
Got ready feeling a little shakey but ok overall until I finished taking my supplements and went for a bite of food. It felt stuck in my throat.
I told my husband, "Something's really wrong." Laid down on the couch. Didn't help.
Laid down in bed. Said sorry to family about missing services- glad they went without me.
After an hour I wrote my oncologist's office.
Said "I can't swallow and it is weird."
They called within a few hours.
Told me to go see my primary care physician. He was available so I went to see him mid-day.
He was concerned. I've lost 7 pounds in 2 weeks. Seriously. So frustrated about this.
He said, "Well, we have a good thing, you can still drink liquids, so you can gain weight with liquids." Yeah sure. Man, I LOVE food. I'm not pleased.
He sent me for an x-ray to see if there was some obstruction. Couldn't see anything on the x-ray. Found my scan interesting though since my internal organs have shifted a bit since my lower lung on the right is gone.
He told me I had to get a CT scan with a contrast = needle.
He performed a miracle and got one for me an hour later.

Quiet waiting room for my mom while I got the scan.

Then his nurse performed a miracle and got my insurance to approve of it within the 40 minutes it took for me to get there with my mom (I picked her up, needle = I want my mom!!! Or a loved one for support!)
The center I went to was terrific. NOT a hospital. All they do is scans, they are focused on you. That's the way to go in my opinion.
The wonderful person was able to get a line in me, quickly zip me in and out of the CT machine, put the contrast in me, again zip me in and out of the CT machine and I was done.
I've been avoiding scans.
Last week my physician's assistant (who I loved) really wanted to scan me right away but I told her I really didn't want more things zapping me/being pushed into me... can't avoid it now Debbie!

Got home.
Watched the end of the documentary on the comedian Tig on Netflix- I recommend it, loved it.
Snuggled with my dog.
Got the call.
My primary care physician called me and gave me news.
Blech.
I should have called my husband in and put the dr. on speakerphone.
Didn't realize the brain dump I'd receive... good Dr. though.

So, the tumor of my lymph nodes that was always near my esophagus/heart that was 1.5 cm or so is now 3 or so cm. It is like a little cluster of grapes going down my esophagus and ending near my stomach. There are many enlarged lymph nodes...
They could be going into my muscle wall of my esophagus and slowing down my swallowing.
This could be the reason I've felt pain in my chest, this could be why I've been throwing up, this could be why I feel like when I swallow food is stuck when it gets down to my chest, this could be the reason I've been nauseaus, this could be the reason for many things. Sigh.

The doctor then went on to say that since surgery has been ruled out they probably will discuss radiation. If I continue to worsen, I'd need to have a feeding tube... seriously!! That blew my mind.
Not happy.

The doctor said he'd be calling my oncologist/physician's assistant in the morning and discussing my case and then someone will contact me with more thoughts.
So.

I was not thrilled.
It is Yom Kippur.
It is my husband's birthday.
We went over to my parents and had a party for my husband.

My husband's kind of birthday cake- pumpkin pie!!

We had fun.
We laughed.
I ATE FOOD.
First I ate my mom's homemade matzoh ball soup. Felt fine.
Then I ate some avocado. YUM.
Then I had a few pieces of cheesy bread, because I wanted it.
Then I had a piece of pumpkin pie. Because I could.
Then I had a chocolate chip cookie. Because YUM. It is my favorite treat.
Then I had some grapes. Because I could.
So there. I ate. I didn't gag. I didn't throw up (I did throw up last night when I tried to swallow some supplements, it just isn't happening at night).

I love my sister and brother-in-law, they make me laugh and share
share so much love and happiness with everyone...

I ate.
I will give myself time.
I will get up earlier so I don't feel rushed.
I'll eat softer foods.
I'll boost my weight.
I will not deal with a freaking tube (I hope, stubborn Debbie digging in her heels.)

I'm sure I could turn this into a Laura Numeroff story- If you give a mouse a cookie... but naah.
I ate. That's enough.
My family is the best.
I love them.
I'm so lucky.
I'm so glad to be home with them.
My parents saved the day with our kiddo.

My parents are the best. Seriously.

Nope, we didn't plan the Peanuts matching gear. Just how we think.

My husband was able to recover from an interview, flat tire, and get home without worrying about our kiddo thanks to my dad picking him up...
My mom was there with me for the scan. The nurse said "You have a really sweet mom." And I said "Yes, yes I do."
I feel so lucky.
Thank you to all my family and friends who are pulling for me and praying for me. I appreciate it. I feel the support. Even in those low moments today, I know I'm loved and supported.
Thanks for keeping up on my journey. The ups and downs of it. Thanks for reading my long drawn out journals. They help me think out things... and hopefully help wonderful people understand what's going on...