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/
Showing posts with label dehydration. Show all posts
Showing posts with label dehydration. Show all posts
Saturday, November 21, 2015
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.
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...
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...
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