Saturday, October 31, 2015

No work yet, missed? 1.5 weeks...

Hair is growing!
I love spending time at home, with my dog, with my mom, but really and truly, I really had hoped I'd be back at work this week. I was so wrong. This optimistic nurse on Saturday said we're getting you sorted out so that you can get right back into work come Monday. That did not happen.
I had to advocate for myself in an aggressive manner this time. So, thought I'd share some of the communication... but honestly when I think about it now, it wasn't as terrible.... oh yes, it was... but I didn't have to write everything I did to the nurses... I admit that...

Sunday I felt fully debilitated. I was hunched over in pain. Couldn't stand up straight. Couldn't get comfortable in bed. Was in simply terrible pain. And I was so sick of doctors offices by this point...

I sent this message on Sunday evening:

Me:
The feeding tube is working well, I'm up to the suggested amount of food and water but I am in frequent internal pain. Unsure if the tube is pushing at something inside but I can't walk without being hunched over in pain and I can't lay down without massive painful muscle spasms. The incision site is clean.
Not sure who to contact. Frustrated and concerned.
The home nurse was helpful but did not trim the tube hardly at all so I am taping up a really long tube which is frustrating as well. It is at least 8 inches long.
Would love advice. Children's Liquid Tylenol helped a miniscule amount but I'd like to focus my energy on being strong for the Nivolumab to do what it needs to do. Don't think my stomach muscles have relaxed in at least 12 hours.
==

Then on Monday I had these interactions:
===
Nurse: Hello,
As I mentioned on our phone call, Dr. ___ would like to to follow up regarding the pain from the PEG tube with the GI team that inserted the PEG on Friday. She is not concerned with you taking the Children's Tylenol for breakthrough pain, and encourages you take this as ordered for pain.
You may want to use heat, or cold, to your abdomin to help ease the cramping.
We hope this resolves your discomfort.
===

Me: Thank you,
I know this is more than just discomfort. I've had a hysterectomy, a partial lung removal, a lumpectomy. I've had drains before in me for days. I've had pain before. I'm good dealing with pain. Honest. This is debilitating. I cannot stand up straight. I cannot walk without pain. I cannot lay down without taking 10 minutes to situate myself. This is more that just discomfort. I am very concerned. Please help. Pleading now.
I honestly think someone should actually look at me instead of telling me to use a heating/cooling pad. I depend on my job. I had to take another sick day. I'm very concerned that I'm still stuck in bed.
===
Nurse: Hi again,
I noticed this message because it was under Dr. ____ but the provider who placed your PEG tube was Dr. ____  so I will be sending the message to her team to follow up with you.
Take care, ___

===
Nurse: Hello,
This is P___, RN of Dr. ___.
I am sorry I haven't been able to reach you via phone but I discussed with Dr. ___ and she believes you should be evaluated in the Emergency department in regards to your debilitating PEG pain.
You might need a CT-scan and the GI fellow on call can see you in person there.
We want to make sure you are safe.
___ RN

===
Me: Thank you. I am waiting at the ER. Honestly feel like I'm being punished being sent to the ER for speaking up for myself.
I've never been sent to the ER in the two + years I've dealt with cancer.
The germs and exposure here in addition to wait time for goodness knows how long is not pleasant. I just had chemo/immunotherapy treatment on Saturday. I was told to avoid germs.
But I'm doing as I've been told.
Thank you.
======
Nurse: I am sorry you feel this way Debbie, but we don't know what could be wrong unless somebody lays eyes on you. Unfortunately, at a clinic setting we don't have the ability to see patient for urgent evaluations that your stated pain warrants.
I hope you can be seen soon in ED.
Sincerely,
___ RN
======

Posted this after the ER visit:
Home from ER after 4 hours. Glad I got seen instead of accepting being put off by doctors but man I didn't enjoy the ER much. 
I found out I'm a special case (go figure). I'm 1 in 10 patients who have a feeding tube complication of basically a charley horse/massive pain at the incision area where they cut thru my abdominal wall/muscle/nerve. So pain should subside soon enough (they said 4 or so days) So relieved to have an answer. Pain meds might help. Thanks to all concerned. Just chilling out at home and appreciating my parents who have been thru too many days of my medical mishap lately.

===
So, that was Monday. Now it is Saturday.
Today, Saturday, is the FIRST day I am able to easily get up/move around/have energy/almost feel like "me". Seriously. That's 8 days after the procedure that I was supposed to recover from within 24 hours. Harumph.
I missed work all week including a costume book character celebration (broke my heart to miss), a book fair (I've missed book fairs for the 3 years in Hong Kong and was so upset to miss my first one at my new school, everything went smooth because there's an amazing team/staff who manage it but MAN I hated to miss it...)
Bah. 
Hooray for feeling a little human.
Not fond of the formula I'm on but yesterday I went with my mom to my naturopath and we discussed how to make my own healthy formula packed with greens, vitamins, healthy energy mix, etc. Looking forward to trying out soon. 

What am I dealing with now? Pain- if I cough, heaven forbid. I'm pretty debilitated if I cough. My recovery time from a coughing fit is much quicker though. Not quite standing up straight but MUCH better than before. A mom who has watched me at my lowest and celebrated me getting around smoothly today. Pile up of emails at work and learning to let go once again.
Weight. I'm up to 115 now. Stable there. Hoping to gain more consistently, will see. Crazy to be below 130 in my opinion but I can gain it again... I'm sure I can.

VERY happy to be on Nivolumab. I'm excited and hopeful. Seriously hopeful. So grateful to people who have helped out. Receiving a book on feeding tubes and recipes, etc. last night was a gift, wonderful surprise. Kiddo getting to attend an awesome Halloween party and being so happy... plus his final soccer game today. 
So relieved to count on my parents. Relieved that my husband has a job that is turning out ok. Relieved that the kiddo is starting the after school program on Monday. Hopeful to go to work on Monday, shall see, won't push myself!

I was recommended to visit this feeding tube community:
Feeding Tube support community: (very overwhelming site)
http://oley.org/index.html

Not too much else to share.
Hair is growing out and getting unruly. Love it still but man it is starting to be an afro... want to grow it out for another month or so and then will try out getting a very light trim. Happy happy happy to have hair. So relieved the Nivolumab doesn't make my hair fall out (yes, I'd still take it if I did make my hair fall out, but I'm celebrating having hair here!)

Hooray for hope.
Thanks, as always, for journeying with me...

19 comments:

  1. I am hopeful that THEY did find a cause for the pain, and that IT will soon be gone so you CAN go to work and do what you LOVE, Debbie. I've dealt with the medical world, and had many wonderful interactions and more than one not so good. Don't apologize for pursuing what you need. It is frustrating!! I have said that when things like this happen I'd go home to kick the garage door. I know, silly, but sometimes just saying it helped. Hugs to you!

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    1. Thanks. :) It has eased up tremendously.

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  2. I'm sending positive vibes. Too many of my friends and relatives are having similar issues. I just came home from visiting one of them. All the best from the Wet Coast!

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  3. Glad that you have enough energy to advocate for yourself, and that it helped!

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    1. Yes, was sitting thinking about how hard it must be for those who don't have the energy to advocate for themselves...

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  4. Good that you're finally feeling a little better. When you go back to see the GI group who placed the peg you may get more suggestions and answers. As always prayers for weight gain, recovery, and remission! Love and (gentle) hugs!

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    1. Thank you Aunt Lanie! :) Love and hugs your way....

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  5. Oh man, a trip to the ER. Always a bummer ... but I'm glad you had an answer of sorts. I hope the pain goes away soon. GO AWAY that pain! Hugs.

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    1. Pain is easing up... Hugs your way... :)

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  6. Hurray for hair! Hurray for lessened pain! Hurray for the hope and determination that is you!

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    1. :) Yes, hurray hurray hurray... Hugs...

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  7. Wow, Debbie. I thought of you all day, then found your post when I got home. So sorry you've been in such pain for so long, plus have to deal with people who obviously have never experienced debilitating pain themselves. Hopefully, the worst is behind you now. Sending you lots of love, Debbie. You're not alone. XXXOOXO

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  8. What a week Debbie! All those days, all that pain. I am so thankful they have found a cause and can help you now. Somehow it still does seem right that the doctors responsible for the procedure would not address it themselves. I too am happy you are on the Nivolumab. Hooray for hope! Sending you love, hugs and doggy kisses from Xena.

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    1. Many hugs. Much hope. :) Love and hugs your way and Xena's way!!

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  9. Debbie, I haven't read all the comments, but I think you were very justified in advocating for yourself the way you did, and am dismayed (understatement) that the nurse you were communicating with weren't more concerned given everything you told them. Never worry about whether you are being too strong or making too many demands in that regard. I know that would be hard for me too, and for so many women... and men . . . I know, but you are right. If you are in pain, it is not a hangnail or booboo you are complaining about.

    Now, let's go Nivolumab!!! Do your magic!!!! <3 <3 <3 Huge love.

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    1. please correct my bad grammar in the above in your head as you read it. Oy.

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    2. Thank you... I'm glad I know how to speak up for myself. :) Much love your way.

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