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Introduction

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

Hi All 

After being here a little while I thought I’d share my experiences so far  I apologize for the long post that Im about to write but hope it may help someone else as the experiences I have read from others has helped me. 

I had been experiencing various stomach issues for a few months that I thought were related to my new unexpected promotion with increased responsibilities and frequent travel  I thought it must be stress as I had never had stomach issues whatsoever. One night almost exactly a year ago I woke up sick in middle of night and vomited multiple times throughout the night and into the morning while I was of course attempting to get ready for work like nothing happened  I finally vomited what appeared to be a large amount of blood and that scared me half to death. I resumed getting ready for work until I realized how ridiculous that was. I was weak and I started having severe pain in abdomen so for the first time in my life I went to emergency room and called off of work (embarrassing but true)

i was given a cat scan and was immediately told it doesn’t look good, things looked complicated and they referred me to ob/gyn because they thought it was ovarian or uterine related. I had biopsies on cervix and uteris or whatever and they came back clean. My CEA was in normal range I thought I was golden. Figured maybe it was something else. Had ultrasound and was told I had very large mass basically filling my abdomen so they were unable to tell what it was or where it was coming from. I was referred to an ob/gyn oncologist surgeonwhich raised my alarm bells. She told me that despite the positive test results , she was not buying it and expected it would be cancer but not sure what kind till they removed it. I had an exploratory surgery and ended up with total hysterectomy and a resection of the colon.( no bag needed)  The next day it was confirmed I had colon cancer with one mass in my colon (forgot to mention I had colonoscopy that was not completed due to what had been found in cecum)as well as a large mass connected to one of my ovaries. It had apparently broke through colon and formed large mass on ovary. I made mistake of asking how big was it as I am unfamiliar with centimeter or millimeters she said of its the size of a baby’s head. I thought I would faint at the thought of it but thank god it was removed!! Oh and my appendix was found tangled in the mass after the path experts checked it. Funny story.. the dr was like we didn’t find an appendix during surgery I was like well I’m pretty sure I had one lol I never had surgery before so it should be there)  It cracked me up truly 

I started Folfax 5 weeks later and am still getting chemo every two weeks. Early onNeulasta was added which I still receive every two weeks after chemo is disconnected from the take home pump. (For anyone that doesn’t know ,Claritin fights effects of Neulasta which can be very painful to bones. The Claritin prevents it so I take it at least two days before and 5 days after chemo and it has worked for me)  I originally expected it for 6 months but at one point a pet scan showed specks on liver (2) and one lymph node that lit up (20 had been removed and tested at surgery and they were all clear.) I believe this is when they added Avastin to my regimen. After 14 round I was given a break from Oxliplatin after having had an allergic reaction that i thought was gonna kill me dead right that moment (thank god for nurses who got me through it). I was then on the desensitizing program fOr another bunch of treatments that took 10-12 hours instead of 4-5. No worries I marched right through it but then had an episode of dehydration  and started dropping weight quickly. That was scary cuz I started out around 115 lbs and lost ten from the surgery. So anyhow I lost about twenty pounds and was taken off the oxi. What a relief!!! Don’t get me wrong if oxi is what it takes I wanted it but dr said 14 rounds of it was really good and if we have to go back on it we will. 

That was early February. Since then I have regained about 12 pounds and feel so much stronger. I no longer see bones. The mmj I have been on has helped enormously with my appetite so my theory is Eat what I want  when I want it ! It was so hard to eat anything before now I eat everything I would normally eat except for the few days surrounding chemo. I recently had shared that my last cat scan and mri and lungs show clear. The small specks in liver were not seen and the lymph node issue also seemed resolved.  Of course I was doing backflips in my head but seems for now we keep marching with more treatments. I’m ok with it because at this point it is relatively routine with a few bad days and then a lot of really good ones. Of course I may feel differently if I didn’t feel like I was doing as well as can be expected. 

I have been unable to work since the day I called off. I shake my head at the reality that I am considered disabled and I am actually on SSDI.   I’m grateful but can not believe all of this happened. I’m so grateful for my sister who stepped up as caretaker. I split my time between her house and my apartment where my kids are also a huge help. Mostly I go to apartment because I spend great time with my kids.... that is the gift cancer has given me. I have spent a ton of time over this past year having fun just being with my kids and making sure they know how loved they are. When I’m at my sisters we have a blast laughing about anything and everything. I’m always saying oh I’m so lucky over this or that and then I laugh how I’m the luckiest girl in the world! I actually do believe I’ve been very lucky, that’s the flat out truth of it. I try not to let this get me down and appreciate the good days and the good results when I’m lucky enough to have them. I am internalizing the idea that I could be in chemo forever and the people on this forum have helped me appreciate everything even more. If I have to have neuropathy and running nose, barely there hair and all of the other assorted side effects I’m trying to keep them in perspective  I believe if I had not gone to the ER that day I would have been gone by now.  

Thank you for this group. You are all the best !!!

Please excuse any typos :) 

SK

55, female and stage 4 and oh my name is Bridget 

Trubrit's picture
Trubrit
Posts: 4759
Joined: Jan 2013

What a story, and what a great attitude.  You will fit right in with us here, because we're all in it to win it, and while we don't want any more people to join our forum, its a sad truth that they will, so I'm glad you found us and are here to help others as they help you. 

Tru

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

Thank you Tru. You are an amazing woman and I appreciate you very much. 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for sharing your story! Wow, crazy about the appendix, hey? What a battle you've been through. 

Tru, in it to win it, I like that!

Jan

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

Thank you Jan 

You are an incredible woman and I’m happy to get to know you.

Its breathtaking how strong some people can be in the face of adversity.

sk

myAZmountain's picture
myAZmountain
Posts: 241
Joined: Apr 2018

I find it so interesting regarding the appendix as it was my appendix that "alerted" me there was a problem, the tumor had grown into the neck of the little buggar and it became very angry and painful--surprised yours did not complain too--maybe it did not have blood supply interrupted?? In any case you are beyond brave and strong --thanks for posting a remarkable journey!

 

SandiaBuddy's picture
SandiaBuddy
Posts: 841
Joined: Apr 2017

Sorry you are here, but hopefully we can help with information and support.

Annabelle41415's picture
Annabelle41415
Posts: 6123
Joined: Feb 2009

Welcome to the board and I'm so glad that you found us, and better yet, so glad that our posts have helped you.  You sure did the right thing by going to the ER.  Having blood as you were throwing up would have had a scare to anyone, I'm sure. It's wonderful that you have a sister you can count on to help you out.  You must be feeling better if you have gain 12 pounds already.  Keeping your strength up is very important to helping you get your strength back and maintain a better energy level.  You are right, spending time with your children somehow becomes more a priority after a life scare.  You have found a wonderful group that cares how you are and can help you through this terrible journey you have been thrown into.  Wishing you the best going forward and please keep us informed as to how you are doing.

Kim

Kazenmax's picture
Kazenmax
Posts: 330
Joined: Feb 2016

What a strong, determined woman you are. I can appreciate your thinking about going to work. I felt the same way! I was doing some traveling for my job so I thought that my stomach was out of whack because of bad eating and stress. TheN my father fell and I thought I strained my back trying to pick him up. I had thought the small amount of blood that appeared was just a hemorrhoid. The idea of cancer never occurred to me! Even when the doctor said she felt a lump on the initial rectal exam!

i love your attitude! I’m so sorry you are here but I’m glad you have such wonderful support. I love that you found reasons to laugh through all this. That’s something I appreciate as well. 

Keep the faith, Sister! This is our only life. Make the best of it you can! It sounds like the chemo is working well! Here’s to your continued health! Good luck! 

K

Steelkiwi686's picture
Steelkiwi686
Posts: 36
Joined: May 2019

Thank you all for the warm welcome! I was scared to seek out any groups worried it would make me obsess about my situation. What I found was an amazing group of people all in the same situation (more or less) who have kept marching through this crazy upending experience, who manage to live their lives day to day the best they can and appreciate the good days. I am in awe. It is very uplifting to see the power of the human spirit on full display.

 SK

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