Sunday, October 25, 2015

Feeding tube? Check. Nivolumab? Check.

Catherine and I- she can get me to smile in a dr. office!
Yesterday I got my first infusion of the immunotherapy, Nivolumab. Scheduled to receive it every two weeks indefinitely... A nurse I was chatting with said this about my new oncologist "People don't get in her way..." So happy to have a strong advocate in my court...
Happy first dose is in. Sure there are a few worrisome side effects but worth it for hope and life longevity....

I got the feeding tube on Friday and learned how to use it Saturday. Happy to be getting some nourishment. Internally the tube is a little torturesome, makes muscles spasm whenever I move, incredibly frustrating. Trying to breathe my way thru the pain, shall see if this is something I heal from or if I have to get used to... Laying down takes me five minutes to slowly move and avoid pain spasms... same with walking and presently I'm walking hunched over, not healthy. Tried kids liquid tylenol and I think it helped a bit... I'm on additional pain medicine that's keeping tumor pain mostly in check... Stood on a scale today and was at 118, hooray!!!!! If I wasn't dealing with the pain I think I'd be doing so much better stamina wise. Certainly have more color in my cheeks... and haven't felt like fainting since Wednesday, phew...

It is odd to feed myself by tube. It is a ghastly long tube in my opinion. The home visit nurse cut off around 6 inches and still it is long!! I have protein drinks I use and add in water before and afterwards. Almost scientific...

This ding dong IV was in me for 2 days...
so a new line didn't have to be started...
happy bees tape this time!
Want to get back to work but will see about this pain first...

Grateful my friend Catherine went to my oncologist appointment and feeding tube procedure with me on Friday and also my first dose of Nivolumab on Saturday...
My mom and husband also learned how to use my feeding tube... and my happy boy had a great time with my parents on his day off school and then loved a fun fulled time with his aunt and uncle for overnight fun. Happy he has stability and fun. He's worried about me so it is good he has happy healthy distractions...

Saying "yes" to offers of help has always overwhelmed me but I am doing so more frequently. My friend Miriam visited and cleaned our much needed to be cleaned bathrooms... so grateful and relieved... my mom has also had a eagle eye on many ways she can lighten our loads... Doug and the kiddo can only do so much, especially with Doug working full time now (hooray).

Hi feeding tube. Looks small and easy, right? Wrong....
Watched a little bit of the series: The Truth about Cancer, A Global Quest- important info but long and honestly draining for me to watch.
They mentioned something, The Gerson Therapy- not right for me presently, I've read about before: http://gerson.org/gerpress/the-gerson-therapy/  Interesting approach... Also https://en.wikipedia.org/wiki/Hoxsey_Therapy the Hoxsey Therapy was an interesting health practice approach...

Thanks for journeying with me as always, feeling like things are starting to look up... slowly but surely...






16 comments:

  1. That weight gain is great! Tube must be challenging tho. oy oy. Here are some more bushels of loverino and calories . . . xxxx

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    1. Thank you... love and calories, hooray! xxx

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  2. I agree with Sharon, Debbie. Hip hip hooray for the weight gain. You have the strength of a warrior. Oh my gosh! Sending love, hugs and doggy kisses from Xena.

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  3. Hoooo-rayyy!!! for more weight! You are truly a warrior woman! Sending hugs your way...

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  4. So that was me above who wrote that comment. Apparently my husband Brad logged onto Google on my computer and didn't log out, didn't notice until now...

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  5. glad you are getting some nourishment, girl! Love the pinker cheeks! Yay thinks are looking up! go Debbie xxx

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    1. Yes, things are looking up, thank goodness... :) xxx

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  6. Thank you for posting the picture of the feeding tube. I think it takes the mystery out of some of these things which may be very helpful for people - especially those who may be considering some of the same options you are. I haven't said it in a while but KOKO - Keep On Keepin' On! xoxoxooxxo

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    1. Thanks. It was a bit of a mystery for me. KOKO, always. xoxo

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  7. Honey, you are the bravest, and the most beautiful. Sending you lots of love and hope. XXOXO

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    1. Thank you so much Lenore... Much love your way. Appreciate the hope. xxxx

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  8. Hi Debbie, I don't comment often, but I'm reading and sending tons of prayers your way. Here's to getting some weight on....

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    1. Thank you Sharon... weight is still increasing. :)

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