Wednesday, October 21, 2015

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.
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...


  1. Hugs to you Debbie, for the positive I'm hearing after this terrible, no good, very bad day! Even that is full of humor. It seems that you learned something today that is a good thing: dehydration is bad! I'm so glad your mom made you call! (Moms are great!)

  2. Thank goodness for Mum. Hope the feeding tube can go in, then you can get the nutrition your body craves. Your body knows how to heal itself, just got to get those raw materials in. Great to understand the esophogus dilemna, darn that radiation. Thinking of you, much love.

  3. Honey, glad it got fixed ... but boy, you really are stubborn!

    1. Yes. Stubborn, sometimes a good thing, sometimes a bad...

  4. Honey, glad it got fixed ... but boy, you really are stubborn!

  5. Debbie, just occasionally, (only occasionally mind!!) you just have to listen and do as you're told. I'm so glad you have your Mom and family there with you now. Hope things improve for you soon. x Gill x

    1. Thank you Gill. So good to have family close by...

  6. Urg, such a day! Don't want you having such yuk to deal with, but so glad your family and colleagues are there to help, you stubborn donkey. :)) Molto loverino. Today has to be better, right? xxxxxxx

    1. Thank you. Every day has to be better and better. :)

  7. Prayers your way. Keep thinking positive thoughts.

  8. Oh my dear Debbie. I am so sorry you had such a sucky day. Tears came to my eyes as I read your words. You have such incredible strength. Knowing how strong you are, letting go must have been very, very hard but it is the right thing. I am glad you have such amazing, caring people in your life. Sending you love, hugs and doggy kisses from Xena.

  9. Keep up the positive attitude. It is awful some days, but you can do. Food tubes can keep you hydrated and get nutrition in. Try Ensure and put whey protein in your smoothies. Sending positive thoughts and prayers daily.
    Celebrate each small step.

    1. Thank you. Yes, I'm appreciating food tubes. :)

  10. Hugs and prayers, Debbie. And always listen to your mother!

  11. Hooray for your mum! They always give it to us straight. Rest up, honey. It's okay to rest. It's okay not to do anything but heal. Much love and prayers to you, Debbie. xxoo

    1. Yes, straight talker. A good thing. Hugs... xxxx

  12. Oh! Thanks for sharing what was a very tough time. So glad that you got hydrated and that helped you feel better! Good that your mom spoke up!

    1. Thank you... So relieved, amazing what can happen in a few weeks...

  13. Oh! Thanks for sharing what was a very tough time. So glad that you got hydrated and that helped you feel better! Good that your mom spoke up!