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Introductions are in order...

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

Hello Everyone,

 

My name is Anne and I'm 53, female and I was diagnosed in January 2018 with stage 3B rectal cancer.

It began by not being able to have a bowel movement. Lots of straining, and some blood. I thought it was from a hemorrhoid that suddenly popped up, so I did the "ah, it's nothing, let's wait and see if it straightens itself out" thing. After 3 weeks I decided to go see my doctor, she did a rectal exam ( LOL first of my life and I can tell you it was NOT pleasant. If I only knew then it would be the first of many I may have enjoyed it more ) and told me I needed to have a colonoscopy. Flash forward 3 weeks, got the result of the colonoscopy and the doctor told me "It looks like cancer, but isn't testing like cancer, go see an oncologist".

Great, still don't know what's going on but I'm completely freaked. I started doing some reading on the internet, found a different forum that isn't as active as this one, and they pretty much saved my sanity.


Anyway, my treatment schedule was 28 days of chemo and radiation. Then surgery, and then 8 more rounds of chemo. The first 28 days of chemo was Xeloda, and I tell you, it's a wonder drug to me. NO vomiting. Works for me. Radiation sucks the big one (sorry if that offends anyone). I go get my follow up CT and MRI scans and my tumor has shrunk, I've lost 30 lbs and my surgeon says "YAY for you. You are doing so well we are going to postpone the surgery and do the next round of chemo. Go me!


I did 4 months of FOLFOX and life has sucked worse, but it ran a close second. I still didn't have any vomiting, so I count myself lucky on that. I still have hair, although it has thinned out quite a bit, so I count myself lucky on that. I did have the sensitivity to cold, the tingling in my legs and feet. Couldn't walk down the freezer section of Walmart without appearing like I'm a lunatic. Wearing winter gloves, a sweater and a scarf over my mouth. But I like crazy, so I count myself lucky on that. LOL maybe some day I'll show up on a "People of Walmart" site.

Finished my last round of FOLFOX on October 19, 2018. I was so stinking happy.. I rang the bell as loud as I could.  A week after that my husband passed away. A week after that I had to say my final goodbye to him at his funeral. A week after that I had to leave our home in Texas and move to Louisiana to live with my daughter as I couldn't afford to live there anymore.  My heart was broken and I admit that for the longest time I did not care what happened to me as a result of the cancer. I knew that God wouldn't let my husband come back, so I just thought maybe I could go home too.

I'm 7 months out from my last chemo session, and I still have side effects from the FOLFOX. My fingertips are numb, pretty much can't feel them. I occasionally have trouble with my grip, will drop things or just can't pick them up to begin with. My feet and legs are also pretty numb, with the tingling sensation. I did talk to my PCP about that, and she prescribed Gabapentin, and it pretty much helped over night. I still have some numbness, and the tingling never goes away completely, but I can at least FEEL that I have feet.

Brain isn't as sharp as it used to be, and I am sometimes more random than my 10 year old grand daughter, but I find most of that funny, so it doesn't bother me too much.

I had a new colonoscopy in March, 2 new polyps, both benign. The tumor is still there, and still is cancerous, but it is significantly smaller.  I'm currently in the process of doing all the pre-op steps for surgery. Met with my surgeon last week, and unfortunately all the praying I did to not have a permanent ostomy was in vain. The doc let me know that there is absolutely no way to reattach, so I'll be pooping in a bag for the rest of my life. Yay! (insert sarcastic tone of voice here).  I went in search of info on colostomy bags and found my way here. 

You guys are rock stars! I found so much information from people who have lived what I'm getting ready to start and it has put alot of my mind at rest. I've still got questions, but as I read more I'm sure I'll find the answers. Thank you all so much for being here.

 

Anne

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

It sounds like you have been running the gauntlet for a while now, and you're quite the pro.  

Be careful with the Gabapentin. I hear it can play with your memory, and make your mind all fuzzy. I had a freind on it, and it almost changed her into a different person.  Sitll, I'm glad it is helping with the Neuropathy.  

I wish you the best as you prepare for surgery, and the bag. There are many here on the forum who live hapily with the bag, and they can help you in many ways. 

I am so sorry that your husband passed away. I don't even want to imagine how hard that is. We also have some of our members who have had their spouses pass. 

Your introductory post is perfect. So, welcome. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6187
Joined: Feb 2009

Welcome to a club you never wanted to join.  Glad that at least you had another forum to help you through the beginning of your journey.  We have been more active in the past but mostly this board always has people on it everyday so there will always be people chiming in if you have any further questions going forward.  I'm so glad that you made it through all the treatment so far and now just awaiting the surgery.  My ostomy was temporary as they did a reattachment after removing my rectum but I've also have the problem of going 8-15 times a day and sometimes more than that so it's a trade off, but most people don't have the problem after a reconnect.  I'm on Gabepentine 10 years later.  Most everyone's gets a lot better after treatment and mine did, but still not enough because if I'm not taking my medication it drives me crazy and it never takes it away, and still drop things, but still wish it was gone. 

I'm so sorry to hear about your husband and all that you had to deal with after diagnosis.  You sound like a strong person that has gone through a lot and just need a break.

Wishing you well going forward and if you need more information read some of the "About Me" pages above a member's page.  It will give you a lot more information about what they all went through.

Kim

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

Hi and welcome. I'm sorry you're here. You sound like you have a similar sense of humour to mine. Was the loss of your husband unexpected? I can't imagine! I'm so sorry! 

I look forward to your posts. Yeah, the Folfox is a bugger. It almost killed me with a blood clot so I'll never be on it again, thank God.

Jan

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

Thanks for the warm welcome!

My husband was on hospice for chronic COPD the whole time I was going through chemo and radiation and then the rest of the chemo. I was his sole caregiver. His children would come sit with him when I had to go to chemo, couldn't leave him alone for the 4 hours that took, but all the day to day stuff was me. In a way, it made what was going on with me easier, as I couldn't worry about me, I had to take care of him. As for his passing being unexpected, it sort of was. When he first went on hospice, it wasn't because he was at death's door, but because his doctor thought it would be easier for him to have all of his care in one place. When I first started this journey, he was very supportive and held my hand when I was crying because the radiation made me so flipping tired that it was all I could do just to cook his dinner. But as his disease worsened, his brain became starved of oxygen and he started having hallucinations . He once looked me dead in the face and said that I was going to burn in hell for murdering him. It was pretty rough, and I know he hated what was going on when he was him again. I do believe he grew tired and decided he had had enough. I still miss him every day.

My mom once told me "Laugh and the world laughs with you. Cry and you cry alone. The world has need of your laughter, but has troubles enough on it's own." That is something that I try live by. If I can't laugh at myself, then we have a problem. I tell everyone that I have rectal cancer because my butt is the biggest part of me.

I WILL beat this. I refuse to go down because of a pain in my butt. Not going to happen.

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

aren't they always right?!!

BUT, sometimes you need to cry, and this is a good place to do it. We WILL cry with you, because your tears have been/are our tears. 

But being positive and having that fighting spirit will give you the edge. You CAN beat this and you WILL.

Tru

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

Sometimes I tell people when I have to tell them I have this "yeah, me and Farrah Fawcett." I'm so sorry about your husband. I can see how that would be your focus instead of this. 

Jan

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

I've FINALLY been scheduled for surgery... I'm scared, but strangely excited. I'm so ready to get this over so I can see what happens next. But the bag though... I'm a mess...

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

I will put you down on my calendar and be thinking of you all day.  

It is not odd to be excited. You are actually 'doing something' that will get rid of the Cancer, so yes, it is exciting. As for the bag, you will deal with it, because yuo have to, and you're alive and will be moving forward.  There are many here who can help you along the way. 

Good luck on Tuesday. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6187
Joined: Feb 2009

You have every right to be excited because you are relieved that this is finally going to get this part of it over with.  My reaction was the same.  It's also scary as you don't know what to expect.  I'm praying that everything is successful and that the doctors, assistants and nurses will be giving you the most successful surgery and care.  When you are able, please let us know how you are doing.  Wishing you the best.

Kim

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

I hope all went well with your surgery, Anne and that you are recovering well. 

We will look forward to an update when you are feeling up to it. 

Tru

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

Hi Everyone,

Just an update on my surgery.  It went very well.. The doctor removed the tumor, my rectum, 2 lymph nodes and my ovaries. Said he didn't see signs anywhere else and that he's confident that he got it all.

Recovery has taken me longer than I thought it would. I consider myself a strong person, but it's taken some time.  Best advice I can give someone is listen to your body. It knows when it's ready.

 

Got the staples out of my abdomen 2 days ago, and boy does that feel much better.  I can actually sit up for longer than 5 minutes.  Still have the staples and stitches in my bottom, and it looks like I had an infection brewing.  My doc put me on some antibiotics and most of the pain in my bottom has gone away, so sitting is much easier now.

 

I don't remember most of my hospital stay as they gave me really good drugs. I got morphine and percocets. The morphine made my dreams really wild. I saw my dead ex husband, my husband, and my mom.  Then whenever I closed my eyes, my room turned in to an old school bike shop. Bikes every where, including the ceiling. Right above my bed was a green Huffy motorcross bike.  LOL  My brain knew it wasn't real... I'd open my eyes and it was a hospital room, closed em, bike shop.

 

The dreaded bag isn't so bad. Changing it is gross, but I'm sure I'll get used to it.  Had a minor freak out the first week I was home. I went to the bathroom to empty the bag. As soon as I unclipped it, it slipped out of my hands and I had poop all over the floor.  I couldn't bend down to clean it up, so I had to call my daughter to come do it.  I'm freaking out because that is NOT a job she should have to do, I was embarrassed and started to cry. She assured me everything was ok, she cleaned up my mess and made it all better.  I love that girl, she has been my rock durning my recovery time.

 

On July 12 I go see the oncologist for my post-op check. I'm sure he's going to order a CT scan and a MRI...  I can't wait for the results from that.

 

 

Thanks everyone,

Anne

nuc
Posts: 42
Joined: Jun 2019

Anne,

I'm so glad things are turning out well for you.  I know it is a struggle getting used to the bag.  I've been with my wife every step of the way, including the laking and spurting out of the stoma that Jan describes. 

As a man, I can tell the people here, that the bag is not as obvious to the outside world, as you think it is.  My wife is also very self conscious of the bag filling while we are out, and worries that people must be able to see it.  We even needed to go out and buy new pants and shorts that are baggier, so the bag was less obvious.  So, all I can do is keep telling her that it can't be seen and even if somebody does see it, they'll have no idea what it is, so she's safe :)

Adam

 

Annabelle41415's picture
Annabelle41415
Posts: 6187
Joined: Feb 2009

So glad that is over for you too and that you are home and trying to adjust to things. 

I'm so glad that your daughter is there helping you.  When first getting my bag, my accidents would happen in the middle of the night and my husband would have to help me clean up the bed along with the mess in the bathroom.  He was a gem, and I'd cry and cry because when that happened it made me feel defeated somehow.  You will get better equipped to handle these situations and learn new tricks to not let it happen or try to prevent it from happening again.

Getting the staples out is such a relief.  Hope that your pain is under control too. 

Remember to walk, walk, walk.  It surprisingly helps you heal faster.

Welcome home and thanks for the update. 

Kim

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

Thanks for the update Anne! I'm glad you're feeling better and getting on top of it. I've had the bag accident before. Usually when I use the bags they provide in the hospital with the clip. There's a specific way to do it and it takes me a few times to get the hang of it. Last time I was in the hospital it came out like a fountain and I wasn't able to clean it up and the maintenance guy had to do it. I was so embrassed. But my everyday bags have a plastic velcro type of closure and they are easy to just empty into the toilet. I hated it at first but now it is what it is. The only time it annoys me is times like right now when I have a wedding to go to tomorrow and the dress I love is a sheath type and I know it'll fill up over and over and show and I'll be self conscious so I'll have to find something else to wear. 

That's something that both I and  friend that has an ostomy due to Chron's have in common. As soon as we start to eat the bag fills up. It usually works out that if I'm out for dinner about halfway through the meal it suddenly fills right up and I have to leave my food and use the bathroom to empty it. Super annoying. I'm not sure it happens to everyone, though.

Anyway, continued healing and good luck!

Jan

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I have had an ostomy for 9 years, and you will soon find it is no big deal.  Hardest part is finding the right supplies for you.  You can contact all the major manufacturers and they will gladly send you samples to try.

Here is a book I recommend:

The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies

 

Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN

 

It was recommended by my ostomy nurse. It is an excellent source for the person just starting out. It was written by a mother who has an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definately on Amazon or perhaps at the local book store.

I found it very informative and reassuring.

Best wishes and hugs.

Marie who loves kitties

Capox Dude's picture
Capox Dude
Posts: 26
Joined: May 2019

I'm glad your surgery went well.  You sound like a strong, intelligent, well grounded woman, and I have no doubt that you will do fine post-surgery, and be able to love on those grandchildren for years to come.

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

The visit to the oncologist went VERY well!

 

He told me that they tested my margins and they came back negative. He also said they test the 13 (more than I thought) lymph nodes the surgeon removed and they ALL came back negative!

 

I asked him, "does this mean that I don't have cancer at this time" and he said YES...

 

I don't have to go back until October for the first scans. 

suzycruise76's picture
suzycruise76
Posts: 84
Joined: Mar 2019

big congratulations on your results! I know exactly how you feel-my situation is very similar.

I had a colorectal tumour (diagnosed January 2019);did 5 weekes of Xeloda plus radiation; surgery May 31st. Removed the tumour,my uterine,ovaries and 14 lymph nodes. Pathology results-everything was negative,no mets. My surgeon said he got it all.YAY! My oncologist still offered follow-up chemo (again Xeloda,but much stronger and longer),which I,after long thinking and discussing with the oncologist,declined. She sort of agreed,she said that she "can live with it" .

I have a temporary illeostomy,which now can be-hopefully soon-reversed. And I already got an appointment for CT scan on October 15. 

I was wondering:when you got your great results and was told that you do not have cancer now, had you been offered follow-up chemo? If you had,would you accept it?

Anne,thank you for sharing your story,and if you want to ask me something,feel free to do itSmile.

Wishing you all the best,

Suzy

Msboop15's picture
Msboop15
Posts: 81
Joined: Apr 2019

Absolutely wonderful news!  

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

Thanks everyone!

 

Suzy, in regards to your question, I would have said NO.  Chemo really wasn't too bad for me, but I don't want to do it again. Hopefully I will stay cancer free and not have to.

 

Finally got the staples out of my bottom yesterday. Ahhhhh  what bliss....

 

Hope everyone has a fantastic day!

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

I'm late to the thread, but welcome to this place, I 'm glad you're NED after all that stuff. It's nice that your surgeon feels certain about things, mine never offered such positivity. We've gone through some similar experiences, though I avoided the bag, and had two recurrences that required liver resections. I hope it's all good news from here on out on your health, and you can make something good out of the place where fate/life has left you, counting time the way many of us do while trying to have a meaningful existence. Stay strong..........................Dave

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

Just wanted to pop in and say HI!!!! Been moving around a lot more now that I have my staples out and I love it.  Still have a little bit that isn't healed yet, but I'm waiting patiently! Hope everyone has a great day!

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

and know that you are healing.  

Twice I had a wound that would not heal, and thus, feel your pain. 

Lots of healthy food and water. Exercise - walking is the best, post surgery - post anything. And your every present good attitude. It all helps. 

Best wishes. 

Tru

AnneO1965's picture
AnneO1965
Posts: 38
Joined: May 2019

Well, my first MRI post surgery has been scheduled... It will be on Oct. 25... Then I see the oncologist on Nov. 1...  I'm nervous, scared and resigned... The what if's are driving me crazy. 

On a side note, did anyone have a whole lot of back pain caused by their cancer? My back is killing me, and I can't figure out why. I'm going to talk to the doc about it when I go, but I'm not sure if it's cancer related.

SandiaBuddy's picture
SandiaBuddy
Posts: 882
Joined: Apr 2017

Yes, back and joint pain a-plenty, which I attribute to the chemo.  It is a known side effect of capecitabine, although the doctors claim to have never heard of it.  There are several old threads on this subject.

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

Cancer.  Well, thats what your head will tell you. 

I remember once, my big toe hurt like crazy and for no good reason. I was sure I had cancer in my toe. I know, it sounds silly, but when you have Cancer, then everything you feel is scary. 

Right now I am in the middle of a huge vertigo episdoe - 23 days.  I was doing well in my head, knowing it was vertigo, but as the days pass, I keep getting this niggling thought 'what if its Cacner this time?'  I don't think there is a way to ever get past that fear. 

Saying that, you are right to be concerned.  Definitely tell you Oncologist. He may just still wait to see what your MRI shows. We will pray that it is just 'old age' or chemo related. 

You are on my calendar, and I wish you all the best. 

Tru

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I have that, and have had vertigo up to 4 weeks.  It's signs include unilateral (usually) hearing loss (usually of low frequencies), feeling of fullness in the ears, tinnitus, random vertigo.  Signs need not occur concurrently.

There is also an Epley maneuver that can sometimes stop vertigo if it is benign positional vertigo.  If you haven't seen a dr, please do so.  It also could be an acoustic neuroma (benign) but they'd have to scan for that.  My dr did.  I'm currently on high dose prednisone for a meniere's related issue (sudden severe hearing loss in one ear.)

PM me if you'd like.

Alice

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

Benign Paroxysmal Positional Vertigo.  I fell out of a canoe 12 years ago, and the canoe hit my head on one side, the oar on the other. I sank, but was recused by a sweet teenage boy - while the other teenagers were all having a hearty laugh.  I have suffered episodes of vertigo ever since. 

I haven't taken anyting for it at the moment, but use a wedge pillow and body pillow, as it is worse at night.  

I was hoping to be at the tail end of this episode, but for some reason - probbly a rolly polly night without the wedge or body pillow - it just hit hard when I got up yesterday. 

Thanks for the info, Alice. 

Tru

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