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...

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...