Here we go... my surgery is scheduled for Oct. 2nd, Wow.. this is really going to happen

Hi Anita,

I'm in the same boat as you and Diana, and am going in for my op in 3 weeks.Not looking forward to it as i feel better now 3weeks after the radio and chemo treatment, but know it has to be done with no promises about whether it will be a permanent bag or not.

Ive really not been able to write much on here and am impressed that you have kept a daily log which i'll have a look at. I'm in Australia are you in the USA? not sure where this site is from

Well i hope it all goes well and keep your spirits up.

Bye for now Mick 

 

FIRST OFF LET ME APOLOGIZE FOR MY MISPELLINGS... IT HAS BEEN DIFFICULT FOR ME TO REMEMBER WORDS AT TIMES AND DIFFICULT TO SPELL. THIS HAS ALWAYS BEEN A PET PEAVE OF MINE AND HAS KEPT ME FROM WRITING AT TIMES... BUT I SAY AS LONG AS YOU CAN FIGURE OUT WHAT I AM SAYING THEN GO FOR IT. I SAY IT'S CHEMO BRAIN BUT IT COULD BE STRESS AS WELL OR A COMBINATION. WHO KNOWS!

 Hi Mick,

Yes, I am in the USA.. down south in Louisiana actually.

As to my writing about what I'm going through.. it is actually very helpful to me. I've always found writing down my feelings helps me cope with things. Even if I am just writing in my journal for my eyes only. I also like to go back and read what I wrote months down the road, I can then see how far I've come. I tend to forget how I felt emotionally or the pain I felt once things get better.

 I wish you the very best and just know.. from all that I have read ending up with an ostomy permantely is not the worst thing in the world as others have shared here. YES, I'm saying that for myself as well. When you're sitting in our shoes and things are a bit in limbo the unknown can really be scarey. The surgeon is fairly certain he can reverse the ostomy but won't know for sure until he gets in there. He said from what he could feel he only has a 1/2 inch or so of leway. If it is any lower than he thinks then I will end up with a bag perm.  My tumor is 5-6 cms. into my rectum so it's a close call. He assures me he will do everything he can to reconnect  but warns me most of my rectum will be removed and my colon will serve as a new rectum all but the last few inches of my rectum will remain. He said a colon works differently and will have trouble learning to work as a rectum so it will take some time (maybe a year or so) for me to get back to somewhat normal. He has also said I will likely never be completely "normal" again. I will have to learn what not to eat. Being that I have dealt with mild irritable bowel syndrome I sort of know what to expect. I just hope it won't be to a point that I am afraid to leave my house. That is why some people prefer having a bag, that way they don't have to worry about running for the bathroom.

Okay... I went on a totally different direction here so I am going to move it to a new blog of it's on... titled vanity! :)

I wish you the best and will try hard to write here as soon as I recover enough from my surgery. They say I will be in the hospitol 5- 10 days so it may be a few weeks.

My husband, age 53, has just finished his chemo and radiation, he is having a lot of feelings of urgency to go to the bathroom for a BM but when he goes there is almost nothing except mucus type stuff.  I hate to sound so gross but I need to know if any of the rest of you have experienced anything like this.  He was diagnosed with Stage 3 rectal cancer in July.  We are seeing the surgeon in a couple of weeks and are likewise nervous about what lies ahead.  The tumor is large and we are hoping for a reduction to avoid a colostomy but realize its a big possibility.  Any advice?  I still cry a lot we've been married most of our lives to each other.  It just doesn't seem real that this is happening to us.

 

On 9/14/2007 Life is worth the fight wrote:

Hi Diana,

I feel your pain and anxiety! believe me I still remember vividly how it felt the day I spoke with the surgeon. What kind of doc diagnosed you? And the surgeon you're going to see is he a specialist? You really need to see a colorectal specialist for surgery. He is the one who gave me the entire plan layout for my care and best chances for a cure. I have gotten more info from him than anyone else at this point. Two weeks does seem like a long time.. I got in in less than a week. BUT I should tell u I have a different kind of Cancer. I have poorly differientied mucin producing andenocarcinoma.. YES a mouthful!  Little did I know when they told me that that the first two words were of great importance. I didn't get REALLY scared until I typed in all 5 words and did a search. I've gotten over the shock now and it's to were I don't cry much anymore... at least not until yesterday when the surgeon gave me al the info.

 I have a my space page that has a weekly blog from the day I was diagnosed until now. You can get the most insight as to what I have been through and what I face there if you're interested. You have to have a myspace account.. but that only takes a few mins. to set up and u don't have to actually set up a page of your own.

 the link is here: www.myspace.com/lifeisworththefight just click on my friend button and I will send u an invite to get in. Or u can email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 I will be more than happy to talk with you about any questions you have. I know I am really just getting started but I do at least have the first 2 months behind me and A LOT has happened in those 2 mths.

 GOOD LUCK TO YOU! and hang in there.. we can beat this!

Hugs

Anita

 

Hi Anita

Hi Anita

wanted to let you know you have been in my prayers everyday and I hope all went well with your surgery, I hope that you are home and resting, just wanted to let you know lots of people are thinking and praying for you :)

 

I started Chemo at home this week 24/7 - for 5 days and Rad treatments for the next 6 weeks - they don't think I will need surgery as of now- but I am learning to live one day at a time and rejoice in each day, instead focusing  on "beating the crap out of this diease unitil it is gone :)

 Write and let me know how you are feeling when u can

"Hugs back to you"

Diana

 

 

I'm back home now.. surgery went well... a few surprises and I still have a cath bag.. we can't seem to get things working again.. which is really scary! I see a urologist on Tuesday. The surgery was horrible for the first 24 hours but after that it has not been as bad as I expected. I came home this past Tues. I want to write more and share my feelings but am really tired.. that is the one thing I am having the most trouble with right now... no energy at all.. just going to the bathroon is work and wears me out. I know it's still early. Won't be 2 weeks until tuesday. I'm going to try posting my last writing from my myspace page here so you'll know what I am going through. The ileostomy is affecting me emotionally pretty bad right now. I hope that gets better soon. I keep thinking how am I going to get used to this thing that I hate so much.

 

Here is what I posted yesterday to my myspace page::

Home from the hospitol......

Well, I'm home!

Just the physical health info!

My surgery went very well, the doc had a few problems because I am so long waisted. He had trouble pulling down my colon and ended up having to make a longer incision. It's about 14 inches.. maybe 12.. it looks huge from my point of view. It's about 3-4 inches above my belly button and all the way down my tummy. Then I have 3 or 4 other small incisions where they used laproscopy and also did the ostomy.

We didn't get the best of news from the pathology report. Turns out my cancer was not only 4 cms but stage 3 instead of 2. He removed the tumor and 15 lymph nodes... 4 of which had still had cancer including the tumor. He had hoped the chemo and radiation would have my pathology report coming back negative no cancer by the surgery.... however he does believe he was able to get it all. He removed everything he could that might be a problem. He wasn't able to do a J-pouch with my colon without cutting me to my breast plate because of my long body. He opted not to do that. A J-pouch works somewhat like a holding tank to slow things down a bit since I won't be working normally. He said he didn't think it would make enough difference for me worth cutting me open that much more.

The pain of the surgery was way much more than I could have ever dreamed. I just thought giving birth to a almost 10 lb baby boy naturally was painful. I did however begin to get better quickly the first day or 2 and then things went down a bit. They had even planned to let me come home early Sunday. But when they removed the cath. Sat. things wouldn't work... no matter how hard I tried I just couldn't pee. So they ended up putting it back in. On Monday they finally decided to send me home with the cath. and some meds to help make things wake up and work. We were told to pull it out early Wed. morning and hope... and drink water but 10 hours later still nothing. It took a toll on my body and wore me down so they had to send out the home health nurse to re-cath me. So now I have 2 bags to deal with. This sucks what can I say?!?  They will leave it in until I see a urologist on Tuesday. My surgeon is not sure what exactly is happening... could be damage from the surgery or just may be the effects of meds and the cath being in for 5 days. They say it can sometimes be a problem and more so for some people. As I have said before.. if there is a bottom 5 % that something may happen to.. I'm usually in it.

If I'm sounding a bit down it's because I am. I'm just plain tired what can I say and so is my husband. This is the toughest thing we have ever in our entire lives had to go through. But not to worry I have NOT and will NOT lose my faith. I may get down but I still believe and I know God will not fail me. He is working every day in my life... he brings good from the bad each day... he gives me a miracle everyday, I wake and take a breath!! In this difficult time I am seeing it as a teaching time. God is teaching me and showing me things I have never seen before. So even though I fall down and struggle dozens of times each day to get up I will get back up with Gods help. This will not break me... a set back is only temporary.

After a week and a half of not writing my feelings here I must say I am overflowing with emotions. I have come to realize how much I need to express my feelings here. I thank you for listening. I know I get way too deep for some and give out way too many details for others. But just know this is therapy for me and in someways my lifeline and only outlet to this world.

I knew the pain physically was going to be difficult but somehow I underestimated the emotional pain. It's caught me by surprise. I knew it would be hard but somehow I don't think you can ever really be prepared for this even when you believe! For now I am going to try to just share what the physical aspect is because once I start with the emotional part it may get long and difficult for me. I know you are here mainly to check on my physical health. The emotional part is for me.

The surgery went very well. My doctor (Dr. Byrd) is no doubt a tool of God. He told me each day he came by to see me when I would thank him for his hard work "I did the physical work but it is GOD who will heal you". What a wonderful feeling to hear that from a doctor, these days we never really know their beliefs.. some believe they are in ways god. But he clearly knows who is in control and he went way above and beyond what was necessary as my doctor. he did things most doctors would not have done just to make this easier for me. He took into consideration my feelings of how I would look after the surgery. Yes, God is teaching me I have had way too much vanity! He is teaching me so much!! Okay. here I go... detouring into my emotions.

If you don't want to hear about my whining and self pity then stop here...

Okay.. back to my vanity.... I haven't brushed my hair for days... no make up since the day of my surgery... YES, I DID! it was just a little makeup.. : ) I just had to look good for the doctors and nurses ya know? LOL But for now I don't care about the makeup or the hair. Its hard when I look down at my stomach that only weeks ago was smooth and flat.. I can barely bring myself to even look at it... I sometimes want to ask why but I don't.. I won't question this. It is all for a reason. I've now lost 22 pounds.. my weight when I was only 15. I think how can this be... I'm skinny but can't stand to even look at my body in the mirror. I just want to look healthy again with or without makeup. One day I am sure I willl be back to my old self not wanting to leave the house without my makeup and hair done.. but I don't think I will ever care as much as I did months ago.

PLEASE keep praying for me... somedays it's hard for me to pray... I don't doubt for a second but it just gets hard when you're being attacked from what seems like every direction.

Anita

One other lovely thing happened to me while I was in the hospitol. This is also taken from my myspace page:

 

October 11, 2007 - Thursday

OH.. GONE IN 60 seconds... it’s REAL, my car is gone! I saw the movie gone in 60 seconds but never thought it happened around here........... For those of you who may not have heard.. the day after my surgery while I lay in bed in horrible pain......My son drove my car to the hospitol parked it in the hosp. lot that morning. He had flown in from Dallas to help take care of me. So I gave him the keys to my car since I wouldn't be needing it. That afternoon he left to get he and Andy something to eat and my car was no were to be found. It was stolen by some heartless person from a hospitol parking lot at 2:00 in the afternoon in less than 2 mins. The security cameras didn't catch the thiefs but one minute the car was there and the next it was gone. It was one of the cameras that pan around and it was gone! UNBELIEVABLE! I'm still laughing and crying about that one. It's like ok.... what next? But remember when I told you money can't buy the things in life that I truly love? I meant it so thats why I can laugh about it. I only shed a tear because I really did love my car. We spent months finding it and it was my ultimate car. In Sep. was my one year anniversary of owning it. For those of you who don't know... it was a 2002 WS6 red Trans Am. Andy has started looking for another one already. If I can find one just like it I will get another one. The insurance comp. says there is less than a 3 % chance of recovering it. It was a professional job and likely went straight to a chop shop.   I thought an alarm and a special chip in the key had me covered but there are evidently tools out there that can overide it all. It was just a car.. but it was my car and I'll miss it! I can't drive for awhile anyway.

 

So there it is.. the good the bad and the ugly!

 I wish those of you who are facing surgery the best... it's really not so bad after the first day. And ask your doc about a pump thats shaped like a ball that they use a tube to attach to your incision.. it has some type of lidocaine in it that really helps with the incision pain! It's fairly new!

 I will be back on chemo in about 2 weeks. Ya'll let me know how things are going with you! I really care and know just how ya feel!!!!

Hugs

Anita