Saturday, November 21, 2015

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:


  1. I think about you often. Sending you love and light. ❤️

  2. You are in my thoughts and prayers Debbie! Don't push yourself too hard! You are an amazing example of strength and endurance! Enjoy the break! Anne Story

    1. Thanks so much Anne.... see you soon! Taking things slow...