New member with a long story & question

coolvdub

Hi everyone,
I have been lurking for about a week, read quite a bit and learned a lot. Now on to my Cancer diagnosis and treatment.

After trying to convince myself it was only stress causing the my bowel issues, I had what most would consider a wake up call. An urgent need to go, resulting in filling the toilet with blood. Sorry to be so gross, but I want to urge anybody having even the slightest amount of blood streaking to get it checked immediately. Me, I waited, not smart. During a routine doctors visit, the doc asks, are you having any bowel issues or any blood in your stool, my silence and hesitation to answer spoke volumes to him. So we scheduled a Colonoscopy to check things out, Doc said most likely internal hemmorhoid. Turns out it was a little more than that. They found one internal hemmorhoid and two polyps, one being so large they couldn't remove all of it, as well as early Diverticulosis. Doc sent biopsy to the lab and four days later on April 24th I got the call while driving back to work.

I had my consult with the surgeon and we scheduled surgery for a Sigmoid Colectomy on June 15 2009. Things didn't go so well and they had to abort the Laporscopy and open the belly up. Unfortunately during surgery my Ureter was severed and the Urologist was called in to do the repair, a stent was put in and they finished up. The next day when they have you get up to walk is when we discovered my right leg didn't work properly and I had to use a walker to get around. I am now wearing a knee brace and using a cane. All in all it could be worse and I am a very lucky man. Final diagnosis after removing roughly 15cm of my Sigmoid Colon and 23 Lymphnodes was stage IIIc cancer as 8 of the 23 nodes showed positive for cancer as well.

So now if you have read this far, and thanks if you have. On to the question. I am starting FOLFOX for 6 months on Friday the 4th of September. Since I received my diagnosis on my last day at my old job and had to deal with all this ona new job. I have no accrued vacation to use for treatments, but I do have every other Friday off. So when they start they will do the pick line and the Chemo the same day and send home with a pump and the 5FU. I am leaving for the Las Vegas area immediately after my 1st treatment. We have concert tickets to see Reba, an early anniversary gift for my wife, I got the tickets before I knew about the cancer. I really want to make the trip for my wife, she has been so loving and supportive during all of this.I feel making this trip for her is the least I can do, after all she has done for me. Am I crazy for trying to do this? And can I do this? Everybody says I am, but I feel like the Chemo will only stop me if I let it. All my friends think I should just assume the worst from Chemo and that I won't be able to function during it, I say yes I can until I can't. So what do you think?

Don

bdee

Vegas
I don't have the pump, so don't know what your options are for traveling when wearing one. My husband is taking me to London and Paris on September 4. We haven't told the onc yet because I kind of feel he will be against the whole thing. But we are going anyway. This may be the last nice vacation we get to take.

Debbie

Julie 44

Hello
Don,
Well well well you have been through so much lately....I had taken a leave from my job under the FMLA...( I don't know if you can since you just started your job) but check into it..Then when I started feeling better I took an intermitton leave..This protects your job..They don't have to give you the same job back but one similar to it...
I also had 12 reatments of Folfox and Oxi and went homw with a pump for 48 hours..I had treatment every other week...So as far as going to the concert (jealous by the way) You will feel tired and probably alittle nausous but ask you doc for meds for that and take off...I would ask your doc.... but the first couple of treatments were not horrible..The ones down the road as it builds up in your body create havock but you will get past it....Just try to rest as much as possible and drink lots of water it helps flush the chemo out of your body faster...
Good luck and I will pray that you get to go to the concert and if you do have a WONDERFUL time and put all of this out of your mind just have fun........JULIE

coolvdub

Julie 44 said:

Hello
Don,
Well well well you have been through so much lately....I had taken a leave from my job under the FMLA...( I don't know if you can since you just started your job) but check into it..Then when I started feeling better I took an intermitton leave..This protects your job..They don't have to give you the same job back but one similar to it...
I also had 12 reatments of Folfox and Oxi and went homw with a pump for 48 hours..I had treatment every other week...So as far as going to the concert (jealous by the way) You will feel tired and probably alittle nausous but ask you doc for meds for that and take off...I would ask your doc.... but the first couple of treatments were not horrible..The ones down the road as it builds up in your body create havock but you will get past it....Just try to rest as much as possible and drink lots of water it helps flush the chemo out of your body faster...
Good luck and I will pray that you get to go to the concert and if you do have a WONDERFUL time and put all of this out of your mind just have fun........JULIE

Debbie,
Go on that trip if
Debbie,
Go on that trip if at all possible, the way I look at things these days is you never know what the next holds, so enjoy the one you can.

Julie,
Thanks for the info, it helps. I think since it will be my first treatment I will be okay. I have heard the effect is a cumlative one, so hopefully I will get several treatments done before it hits to hard. I will be doing the Chemo every other week and blood work every week.

Thanks to both of you for responding and I will keep you in my thoughts.
Don

PhillieG

Go for it
Sorry to hear of your situation with the cancer but if your Onc says it's OK, then go for it. You could always "spark one up" if you're feeling nauseas.
-p

coolvdub

PhillieG said:

Go for it
Sorry to hear of your situation with the cancer but if your Onc says it's OK, then go for it. You could always "spark one up" if you're feeling nauseas.
-p

phillieg,
Unfortunately my
phillieg,

Unfortunately my Oncologist and I don't see eye to eye. I'm a Kaiser patient and the Onc they had retired, so temporarily I'm using a guy they have contracted with. By mid September the new staff Onc should be at Kaiser, I hope he/she is better than the current guy. I have to flat out get nasty with the guy, to get him to listen to MY needs. It really shouldn't be that way, but it is. I had to flat out tell him get my Chemo on the days I need or I won't do it. Until that point he tried to dictate to me what and when I would do it. As far as sparking one up, yeah I'm all for it. But my employer, the US govt. may have something to say about it. I need to find a way to ask if I have a presciption for it will I be exempt from that one so called drug on the random drug screens they do. Thanks for the response.
Don

Paula G.

Hello Newbe
Hi Don, I would say go for it also. My husband has the pump and is on FOLFOX + Avastin. Just finished his treatment #12. He was getting the treatment every other Wednesday and Wednesday thru Friday he felt pretty darn good. Started feeling bad ( just very tired) Saturaday and Sunday. He worked for about four months and the Chemo kind of builds up and he was more tired and more tired. He also had Chemo brain which I have read of many having. He had a recaction to the OXY and had to stop it on the 9th treatment.
Everyone is different and you just never know how it will effect you. Most seem to do well. Oxy seems to be the worst.
I say go for it. You will have good days and not so good days but I think you have the right attitude and will do just fine. Welcome to the site. These people have helped us a bunch. Best to you Paula G.

kristasplace

Hi Don!
And welcome to our family! My advise is to GO! Even if you don't feel very well. I tried to do as much as i could for as long as i could, and my oncologist was kind enough to let me skip a treatment so i could go to my cousins wedding without being too sick. The way chemo worked for me is that i'd be sick and miserable the first week after getting chemo, and then feeling much better the second week. This lasted for the first few months until the 'build-up' of chemo kept me unwell all of the time with neuropathy, light nausea, and fatigue. I'm glad now that i took advantage of the good weeks while i had them.

As far as your oncologist goes, i can't stress how important it is to have one you like and trust! My oncologist keeps reminding me that we'll be together for the rest of my life, and being at an advanced stage, as you are, you will need your onc for life. I know they say you are considered "cured" after five years of NED (no evidence of disease), but you will have check-ups with your onc forever. Your life is basically in your onc's hands, but you have the final say in your treatments. Sure, i argued with my onc about my treatments from time to time, and sometimes i got my way, and sometimes i didn't! In the long run, my oncologist really cares about me, and is doing the best he knows how to save my life. If you don't like the next onc you get, get another one.

As far as continuing to work? Some people can do it, but most of the people i know who did that regretted it. Some days are going to be very, VERY hard. I would try and set it up now (state disability, SSI, any alternative methods for income), just in case you decide you shouldn't work. I'm of the opinion that if you really love what you do, continue doing it. If it's just a job (especially a high stress job), stop doing it.

Have a great time at the concert, and many hugs!
Krista

SandyL

kristasplace said:

Hi Don!
And welcome to our family! My advise is to GO! Even if you don't feel very well. I tried to do as much as i could for as long as i could, and my oncologist was kind enough to let me skip a treatment so i could go to my cousins wedding without being too sick. The way chemo worked for me is that i'd be sick and miserable the first week after getting chemo, and then feeling much better the second week. This lasted for the first few months until the 'build-up' of chemo kept me unwell all of the time with neuropathy, light nausea, and fatigue. I'm glad now that i took advantage of the good weeks while i had them.

As far as your oncologist goes, i can't stress how important it is to have one you like and trust! My oncologist keeps reminding me that we'll be together for the rest of my life, and being at an advanced stage, as you are, you will need your onc for life. I know they say you are considered "cured" after five years of NED (no evidence of disease), but you will have check-ups with your onc forever. Your life is basically in your onc's hands, but you have the final say in your treatments. Sure, i argued with my onc about my treatments from time to time, and sometimes i got my way, and sometimes i didn't! In the long run, my oncologist really cares about me, and is doing the best he knows how to save my life. If you don't like the next onc you get, get another one.

As far as continuing to work? Some people can do it, but most of the people i know who did that regretted it. Some days are going to be very, VERY hard. I would try and set it up now (state disability, SSI, any alternative methods for income), just in case you decide you shouldn't work. I'm of the opinion that if you really love what you do, continue doing it. If it's just a job (especially a high stress job), stop doing it.

Have a great time at the concert, and many hugs!
Krista

Don,
welcome. I can tell you how my husband has tolerated his treatments. He also is Stage III
and really did much better with the Oxy, 5/FU (pump) than so many others here have done. He had several symptoms on the days of and immediately following his treatment. Tingling hands, jaw spasms, diarrhea and fatigue. But the worst came after the first 4 or 5 treatments. I would think you will be fine to go see Reba. As long as you aren't on the pump during the trip, I say go for it! And enjoy.
Sandy

grammadebbie

Same diagnosis
I have the same diagnosis. Emergency surgery Oct 17 2007 for blockage 1 small and 1 lemon size tumor. Removed 12 inches of colon 8/38 lymph nodes positive. Started chemo 1st week of Dec., I was originally scheduled for the last week in Nov but wanted to spend Thanksgiving in Las Vegas with my family so pushed it out a week. I also have Kaiser, however they have 3 full time oncologists who are wonderful. I had been ill for 3 years and had several surgeries prior to my resection so I may have been weaker then normal going into this so the side effects may have been amplified. I was not able to work but remember, I had been sick for a long time. Regarding nausea, they prescribed Emend, Zofran and others I can't remember. I had been in pain management for about a year and my pain mgmnt doctor told me the best thing would be marijuana, I talked with the Onc doctors and chemo nurses and they thought I should have it incase the other meds didn't work. I live in California so was able to get medical marijuana thru a clinic so everything was legal. Kaiser doctors were not permitted to write prescriptions for it so I just had to take some medical records with me to the clinic and that doctor wrote the prescription. All of my doctors and caregivers knew I was using this. I tried all the other medication but this was the only thing that stopped the nausea in its tracks. It's also helpful in increasing your appetite. I will explain more if you need more info. I'm a 56 year old wife, mom and gramma who doesn't smoke or drink but this really worked. I was only able to complete 11 of the 12 treatments and also had to postpone several due to labs. I tried to stay active with my family but have had a pretty rough time of it. Would I do it again? Absolutely. I have read on this forum about people who continue to work. Everyone is different. I have a wonderful family and will do anything to fight this desease.

This is a journey that will show you alot about yourself. I wish I could tell you that it's easy .. can't do that but can tell you it's worth the fight. I'm fairly new to this board and wish I would have known about it while I was going thru treatment. It's a great source of comfort and information. (sorry this is all over the place - still have chemo brain).
Don't be afraid to ask questions or share any fears or concerns - someone here will be able to help you.

God Bless You
Debbie (gramma - their is another Debbie on this forum so I'll add gramma to my name)

WinneyPooh

Your story could be mine
I had the same experience, when i found out, goodthing we both knew blood in the toliet was not a good sign,

Go to vagas i wish i could. I was texas hold em champ for 2 years at our poker club before they got busted for running, playing real money games, ( We only play'd the legal free games).

I would go to vagas and have a great time.
Winney

tootsie1

Sounds familiar
Hi, Don. I was fortunate enough to be diagnosed at Stage 1, but my cancer journey started with exactly the same kind of experience as yours. Shocking surprise, isn't it? I hope your treatments go well, and I'm glad you've found your way to this site. You'll find lots of help and friendship here.

*hugs*
Gail

Patteee

coolvdub said:

Debbie,
Go on that trip if
Debbie,
Go on that trip if at all possible, the way I look at things these days is you never know what the next holds, so enjoy the one you can.

Julie,
Thanks for the info, it helps. I think since it will be my first treatment I will be okay. I have heard the effect is a cumlative one, so hopefully I will get several treatments done before it hits to hard. I will be doing the Chemo every other week and blood work every week.

Thanks to both of you for responding and I will keep you in my thoughts.
Don

go for it
take your trip- assuming you will be on the pump while there and be dc'd from it when you get back? I would make sure you have a back up in Vegas, as in what do you do if the needle comes lose? Yes, I have had that happen

I had horrible side effects from chemo- but nothing after chemo #1- well I was hospitalized 2 weeks to the day after #1 due to WBC hitting the gutter and I got a blood infection. But those 2 weeks from treatment #1 to that point were the best 2 weeks!

Go and have fun.

snommintj

tootsie1 said:

Sounds familiar
Hi, Don. I was fortunate enough to be diagnosed at Stage 1, but my cancer journey started with exactly the same kind of experience as yours. Shocking surprise, isn't it? I hope your treatments go well, and I'm glad you've found your way to this site. You'll find lots of help and friendship here.

*hugs*
Gail

1st treatment
The 1st treatment isn't too bad. You should feel fine for the trip.

Buzzard

snommintj said:

1st treatment
The 1st treatment isn't too bad. You should feel fine for the trip.

Ditto
what John says .........

Janet3

Welcome
I'm sorry that you had to find your way to this site but so glad you did. Here you will find a wealth of good info and encouragement. My mom was diagnosed Stage IV, started Folfox6, get the treatment every other Monday, has the pump taken off on Wednesday. After the first treatment she said 'this was a breeze, I can make it through this with no problem'. Of course she is the most optimistic person ever. Well, come Friday after the first treatment she felt like sh*t. I mean she couldn't pick her head up off the pillow. But Sunday she was up and dressed and at church. Her second treatment 17AUG09 she felt terrible from the get-go, had to have IV hydration Friday, will not make it to church today. So, again, everyone is different. Attitude is very important, as you can see if you read some of the posts of other patients. Go on the trip, but please do make sure you know where the nearest hospital is. Good luck! My thoughts will be with you and your family.
Janet

ADKer

Janet3 said:

Welcome
I'm sorry that you had to find your way to this site but so glad you did. Here you will find a wealth of good info and encouragement. My mom was diagnosed Stage IV, started Folfox6, get the treatment every other Monday, has the pump taken off on Wednesday. After the first treatment she said 'this was a breeze, I can make it through this with no problem'. Of course she is the most optimistic person ever. Well, come Friday after the first treatment she felt like sh*t. I mean she couldn't pick her head up off the pillow. But Sunday she was up and dressed and at church. Her second treatment 17AUG09 she felt terrible from the get-go, had to have IV hydration Friday, will not make it to church today. So, again, everyone is different. Attitude is very important, as you can see if you read some of the posts of other patients. Go on the trip, but please do make sure you know where the nearest hospital is. Good luck! My thoughts will be with you and your family.
Janet

Working through treatment
I urge you to look into whether there are any options available to you that will allow you not to work during treatment. I have not and believe that it has helped me tolerate chemo very well. Many people here have worked through treatment but I believe that many of them have indicated that their performance was much less than peak and that the help and understanding of co-workers and bosses was critical. Since you are starting a new job, you may not want to make you first impression when your performance may not be your best, if you have any options. If you have no options, I am certain that the feds will survive with whateer you can do. As I said though, I have found the lack of stress and the ability to devote time to exercising and resting to be helpful in dealing with chemo. Best wishes to you.

lesvanb

1st chemo and working
Hi Don Welcome to the board and sorry for what you've been through and will go through but glad you found us. I did well on chemo until about the 6th infusion. I then went to 1/2 time at work (I work 3/4 timw normally). So you should be fine on your trip, and it probably would be wise to have a medical back-up plan in case you need to seek medical attention.

Leslie

Sonia32

Hi Don
Sorry can't help with your folfox, I'm an oxi and xeloda person. I just wanted to welcome you to the board and say that you are in my thoughts and prayers. And I really hope you can make this trip with your wife you deserve it.

Hugs
Sonia

coolvdub

Sonia32 said:

Hi Don
Sorry can't help with your folfox, I'm an oxi and xeloda person. I just wanted to welcome you to the board and say that you are in my thoughts and prayers. And I really hope you can make this trip with your wife you deserve it.

Hugs
Sonia

Overwhelmed by the kindness
Eveyone,

Your words of advice and encouragement are a truly overwhelming kindness that I won't ever forget. I truly appreciate the time you have taken from your day to help a new memeber. I hope to be able to share my experiences and knowledge I gain on this journey to help a new member in the future. I will go on my trip, and I am going to get the address of the local hospital in Henderson,NV which is closer to Stateline than Las Vegas and put it in the GPS. That way Sheri, my wife can find it easily if I have any problems. I know where it is, but it can be difficult to give good directions to a worried loved one.

As far as work goes, they are really behind me. You don't know what a good feeling that is. I will discuss this more with my boss, and ask if a temporary re-assignment out of the machine shop is possible. Maybe I can go into inspection or the tool crib for a while. I will also look into devising a plan "B" in case I need to take some time off. I have already used 6 weeks of advanced sick leave. The good thing is, they do offer a leave donation program for people like myself who have exhausted all of the available leave they have.I just don't feel right taking it since I already owe 6 weeks back to the govt. It will take 2-1/2 years to pay it back. I am currently going in an hour early every day I can and putting that as comp time so when I feel bad from Chemo I can take some time with no worries. But as soon as the Chemo starts, I have decided to only work a normal day, so I can get my rest. I have an hour + commute each way, so my 9 hour day with lunch break winds up being about a 12 hour day. Please know that you are all in my thoughts and I wish wellness and happiness to all.

Don