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I'm home from surgery

Kaleena's picture
Kaleena
Posts: 1939
Joined: Nov 2009

Hello All!

Surgery is completed and I am home!   Thanks Laura for letting me know everyone was asking about me.  So here is a brief (hopefully) story of what came about

As many of you know, I have been dealing with pain daily for a year and a half now and getting no answers.   I have been taking motrin daily for that long.   I changed doctors and the new doctor ordered another biopsy (the one in 2014 was negative so they didnt look any further even though the CT scans indicated growth).   My new gyn/onc did a CT biopsy.  Ouch!   They only gave me lidicane in my buttocks.  It really hurt!    The biopsy came back positive.  Also, my barium enema indicated that I had significant narrowing in my bowel (from the mass).   My surgical oncologist once he biopsy came back positive indicated that we needed to get that out.  My husband and I were going to have the surgery after our trip at the end of May but given the circumstances we opt to have it done as soon as possible.   Because as of right then, there was enough good stuff on either side to reconnect the bowel and he though he could do it without the need for an ileostomy.

Surgery scheduled April 23, 2018.   Surgery went well.   Although they cleaned up all scar tissue and took out other small soft tissues (benign).  Then from one of my previous surgeries in 2010, I had a mesh.  The mesh had grown into my small intestines.  Therefore they had to resection that out and they also removed the mesh.  As a result of this procedures, I needed an ileostomy.

I can tell right a way that not having that mesh there feels so good and I didn't even thing it was bothering me.   I am sore and feel beat up but I have been moving around.

This is what they did:  Removal mesh abdomen, flag implant replacement, lysis adhesions, resection small intestine, excision intrabdominal mass, resection low anterior, ileostomy.

My bladder isn't fully operational yet so I am wearing depends.  I am still working on muscle control.  I was off all pain meds by May 1st - other than occasional Tylenol.

I see my surgical oncologist Thursday - He indicated prelimary results were benign.  However, I did see the surgical pathology report as they mistakenly put in on MyChart before the doctor approved it.   It did say 2/6 lymph nodes had adenocarcinoma and the area around my vaginal cuff (2 mm) had some there also but that the margins were clear.  I don't think that is a big deal but I will let you know what the doctor says.   I went back to read it and it was taken down.

Any way I was to thank you all for your thoughts, prayers and kindness and these positive vibes really did the trick.

Love and hugs to all,

Kathy

CheeseQueen57's picture
CheeseQueen57
Posts: 793
Joined: Feb 2016

whew!  You’ve sure been through a lot!  Heal well, fellow warrior!

oldbeauty
Posts: 187
Joined: May 2012

Rest easy and heal well.  It will be interesting to hear, if you want to share, what all the pathology says.  Yours is such an interesting case, speaking as one long-time survivor with multi-recurrences to another.  I'm glad for your sake that you seem to have a team that is more responsive to your reports about pain, etc.  I'm curious also whether this latest tissue is being sent for testing that might be relevant to immunotherapy now or later.  Post more when you are back on your feet.  Best wishes, Oldbeauty.

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

and have less pain. Glad also that you have a new doctor. 'Sorry you suffered so long in pain. I don't think that  I could do that. Please keep us posted.

ConnieSW's picture
ConnieSW
Posts: 1428
Joined: Jun 2012

you have such amazing fortitude. I admire and respect you so much. You are a hard act to follow. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1519
Joined: Jun 2015

Kathy, It is so good to hear from you! Thanks so much for posting your results so far. What a fighter you are.... I'm so glad you are able to get up and move around a bit already. Over acheiver!!!!! Please let us know what you find out when you see the surgeon. Sending you loads of positive vibes my friend.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1336
Joined: Oct 2015

Thanks for letting us know how everything is going!  I'm so glad you're out of pain and it all sounds encouraging.  Once you know what you're dealing with, coming up with a treatment plan becomes possible.  Please keep us posted!  (((Kathy)))

Love,

Eldri

rcdeman
Posts: 256
Joined: Aug 2016

It's great to hear from you, Kathy!

So happy to hear that your surgery went as well as it could be expected and that you seem to be recuperating quite nicely. Not as happy about the "unapproved" pathology report but you are a survivor and can beat this again!

Will be praying for you!
Rebecca

pinky104
Posts: 574
Joined: Feb 2013

Some of what you discussed as being wrong with you was similar to what I had last year.  My cancer had returned and wrapped itself around my ascending colon and was in a few other places, my incisional hernia was back, and my small intestine had grown into my mesh from my previous hernia surgery.  Two cancerous lymph nodes were found.  I had two bowel resections and a "replacement of my abdominal wall with mesh," among other things.  I had pain a couple of months ago after pushing a  very heavy grocery cart and wondered if the hernia was back again or if I had an abdominal wall muscle strain.  It still bothers me occasionally, either when I'm lifting something heavy, pushing a heavy cart again, or just climbing into bed at night.  My doctor can't locate another hernia and says scans won't show it.  If it continues to get worse, I'll have to see a surgeon again.  i wonder if the intestines are growing into the mesh again.  Sometimes I feel fine and other times I feel like I'm ready for another surgery.  I hope nothing like this develops in you.  Speedy healing!

SF73
Posts: 257
Joined: Oct 2017

Kathy, it is so good to hear your good news. I am so glad that this surgery is going to fix the pain issues you have been experiencing. Wishing you health and many fun filled years with your family!  

derMaus's picture
derMaus
Posts: 555
Joined: Nov 2016

Welcome home, Kathy! We were all worried about you so it's great to hear the surgery went well and you're in less pain. Thank you for letting us know, you'll continue to be in my thoughts and prayers. Best always, B

evolo58
Posts: 293
Joined: Dec 2017

Hope you have a great recovery!

takingcontrol58
Posts: 237
Joined: Jan 2016

Glad to hear the surgery went well.  Hope all is good tomorrow with your onc.

Takingcontrol58

Soup52's picture
Soup52
Posts: 900
Joined: Jan 2016

So happy to hear from you Kathy! Here’s wishing for a speedy recovery!

Kaleena's picture
Kaleena
Posts: 1939
Joined: Nov 2009

Thank you all for the well wishes.  I had my follow up appointment yesterday (May 10th).   They took out the staples (that felt so good!)   I was having a low grade fever for about 4/5 days which they indicate is normal (which is also normal for me).   However, Wednesday night going into Thursday I had a pain in my left groin area - it was  a pinchy/burny feeling.   I had to go to the bathroom in the middle of the night and after that it started to hurt real bad.   I had that feeling earlier but I was under naracotics at the time so it only bothered me a few times.   I have been off meds since May 1st.   It seems to be aggravated when I stand up or sit too long.   Thursday was real bad and I almost thought of taking an oxy.   The doctor indicated that they had cleaned so much scar tissue out of me plus multiple other things and that the muscle was healing.  He said to give it a few days or so.  He also indicated that I could take Motrin which I did instead of using any narcotics.   I slept very well and today although it did bother me was not as bad as it was Thursday.  When I firsts stand, it takes a bit for it to stretch out.  Once it does then I am fine.

Other news, I go on June 7th for a barium enima and then see the doctor again.  If everything looks fine, they will schedule to reverse the ileostomy.  Yea!  They indicated that 2 out of 6 lymph nodes were positive and that the mass had 16 mm positive which was totally encased in scar tissue so it didn't spread at all!    Since everything was removed, there will be no further treatment.

I was to return to work on June 5th but they will extend it another 4 weeks due to the surgery.   They only thing about the reversal surgery the doctor said was that if I feel I have to go I may not have very much warning time.    Maybe I will wear depends for a few weeks after my surgery to be safe

They also did blood work and said my potassium was a little high which could be from dehydration.   I indicated to them yea because all I had that morning was a 12 oz cup of tea and some apple sauce and a little water so I knew I was not hydrated.   They want me to retest again on Monday which I will do.

So I will keep stretching this darn groin muscle out until I can fully move again   Thank you wonderful ladies for all your love, prayers and support.   It is truly appreciated.

All my best to you all

Kathy

derMaus's picture
derMaus
Posts: 555
Joined: Nov 2016

Oh Kathy, that's the best news ever: "the mass had 16 mm positive which was totally encased in scar tissue so it didn't spread at all! Since everything was removed, there will be no further treatment". Congratulations and thank you for letting us know. Despite all the hurdles it looks like this part will be behind you SOON. Best always, B

SF73
Posts: 257
Joined: Oct 2017

So glad you hear that you are recovering well and the possibility of the reversal surgery. Wishing you all the best! Hope your kids will spoil you this weekend :)

cmb's picture
cmb
Posts: 351
Joined: Jan 2018

Kathy,

Your brave saga with cancer over the years reminds me of my mother's long struggle as well. She did, however, achieve remission for several years before she died (not from cancer), despite multiple chemo treatments and surgeries (for what began as cervical cancer) over many years. And her surgeon was eventually able to reverse her colostomy as well – something I hadn't known was possible.

Who would have thought that scar tissue could actually be beneficial, as it was in your situation to encase the tumor!

I hope this latest round of surgeries brings you long-lasting relief.

Wannabeatit
Posts: 97
Joined: Dec 2017

That is great news! Now time to baby yourself and recover. I hope they can do your surgery. 

 

barnyardgal
Posts: 206
Joined: Oct 2017

Wonderful news!! 

oldbeauty
Posts: 187
Joined: May 2012

Be kind to yourself and heal in your own time.  Are there perhaps any specialty massage therapists your doctor can write a Rx for? The kind who do lymph edema massage or other special modalities to tease out the scar tissue and stretch the muscle?  You are such a champ to go thru all this and come out so energized and upbeat.  May the good news keep coming! Best wishes, Oldbeauty

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2567
Joined: Mar 2013

Kathy, we can 'hear' your continued smile through all this adversity.  We all continue to cheer for you and pray your pain is gone.  Thank you for sharing your story with us.  You help all of us in our journey. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1519
Joined: Jun 2015

Kathy, YES!!!!! Best news ever! Thanks for posting. You just keep on healing now and don't push it. 

Love and Hugs,

Cindi

Armywife's picture
Armywife
Posts: 277
Joined: Feb 2018

You inspire me so much!!

Abbycat2's picture
Abbycat2
Posts: 642
Joined: Feb 2014

Kathy, I am impressed with your fortitude, knowledge and self-advocacy. You have helped me to realize how important it is to speak up when something is not right with our health and to insist on further assessment and needed treatment. I wish you the very best with your continued recovery.

Warm Wishes,

Cathy

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

Wonderful news Kathy!!! You REALLY are an inspiration! I'm so happy for you. I hope you're resting and healing well. I'm going to be praying for a super successful and speedy-healing reversal surgery.

Big hugs!

Stacey

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