Re: Fellow caregivers - I need your help

July 12, 2004

Hi Judy:

I'm sure you've read my posts but in the event you haven't or are not

familiar with my circumstances, my name is Monika and I am caregiver

to my husband Bert diagnosed July 2003 stage III colon cancer. Had

complete right colon resection in July, removed ileocecal value and

part of small intestine as two tumors were growing in that

direction. Tumor had broken through the bowl wall, attacking four

out of 10 lymph nodes...thus, stage III diagnosis with high risk

recurrence chance. Three weeks after surgery, Bert started chemo of

5fu/leucavorin, four weeks on (once a week), two weeks off...this for

a total of three cycles. All went very well until about half way

through he developed a severe colon infection and had to be

hospitalized. That was the worst part for him...and it was when he

needed me the most. All along we both lept into this with the

attitude that the surgeon had removed everything there was to remove

and the chemo would kill of the rest. There were no mood changes, no

mood swings, only tiredness and occassional bouts with diarrhea.

When the colon infection hit, it was the first time my husband

actually wanted to give up and although it broke my heart and I just

wanted to hold him and cry, I rallied and got angry at him...coaxing

him, prodding him, making him " give a damn. " His response,

initially, to me was anger....fine, it was a response. Once the

antibiotic meds started to kick in, it was an up-hill climb and his

old spirit returned and we've never looked back since.

In January, we switched oncologist and started going to a major

cancer center. Technically, Bert was done, but when his new onc

reviewed Bert's medical records, pathology report, etc., he sugested

an additional three to four months of chemo adding oxaliplatin to the

5fu/leuc combo. His theory was because of Bert's high risk for

recurrence, be as aggressive as you can be. Bert did not hesitate

and yes, even though very early on Bert made up his own mind that he

was going to take chemo, I would have encouraged him to at least try

it if he had opted not to. Ultimately, the decision, which ever way

he would have gone, would have been his and I would have to respect

his choice...but I'm glad he chose chemo...his total " statistical

odds " were much better as a result of doing so.

When we he started the second round of chemo, side effects remained

physical in nature. Diarrhea was not a problem any more, nausea was

pretty much non-existent for Bert, but he did experience the numbness

of the hands and feet that so often accompanies the use of

Oxaliplatin and of course, again sever tiredness. This did bother

him, even though he never missed a day of work throughout the entire

process, but I encouraged him and told him it was absolutely okay to

be tired and to nap whenever he could. Things could wait around the

house, we didn't have to meet friends for dinner, so what if you're

in bed by 7:00 p.m. every day...it's okay. You are here and that's

all that matters!!!!

Bert did more than just complete an additional three or four months

of the new chemo cocktail...he did a full six month

regime....surprising both his oncologist as well as himself. I hope

that my long narrative addresses some of your concerns. In short,

from your previous posts, your husband sounds like a strong, grounded

person and with you by his side, supporting him, I think you'll both

do just fine. It won't be easy and there will be times you will

absolutely want to scream, shout, cry, and yes, have a little self-

pity as well. That's a good time to come to this board...we'll be

here to help you and support you because as a caregiver, in all the

hustle and bustle, we sometimes tend to get left behind. You'll find

plenty of us here as well as plenty of long term stage IV colon

cancer survivors.

Take care.

Monika

> As some of you know from earlier posts, my husband was just

> diagnoised with stage 4 colon cancer on June 7th. He is to

> have a port inserted this week and chemo to start soon after.

> I need some input into what I am in for. I love my husband

> dearly and want to be there for him no matter what but I would

> like to get a heads up on what I should expect from him. They are

> planning to start him off with 5FU, Levcovorin, Camptosar, and

> Avastin. He will be on chemo 4 weeks off 2. The Avastin will be

> given every other week and we are told it will take all day on

those

> two weeks. I have read a lot and heard a lot about the physical

> side effects but what about the mental and emotional side

> effects ? Will my husband change to someone I don't know? I

> am so scarred that I will not know what to do, say or react to

> things he may say or do. He is already upset with me because I

> will not tell him what to do about taking chemo or to not take it.

> I don't mind giving advise (as my kids will attest to) but this

> is one subject that has to be his decision and his alone. I told

> him I would be with him and fight whatever battle he decides on

> but I just can't make that decision for him. I know he is scared

> and I can't imagine how he feels. I am the orgainzer, planner and

> problem solver in our family and it breaks my heart that this

> is one thing I can't fix. Any advise or help you can give me

> will be greatfully appreciated.

>

> Thanks for being there,

> Judy

> wife of a great man, stage 4 colon cancer, in lympe nodes, small

> intestins, lower pelvic area.

July 12, 2004

Thank you so much for sharing Monika. There is just one think I

don't understand (well one for now). They say Gene is stage 4 but

Bert has it in a lot more area than Gene does. The doc's did not

tell us how long he would have with and with Chemo but they both

did say there was no cure only treatment. Quite frankly, I was

afraid to ask the doctor right in front of Gene. Since has not asked,

I don't think he wanted to know but I want to know what the severity

of it is. What they TOLD us was that they removed a tennis ball

size tumor from the lower colon and the appendix which was right

beside the tumor, about 6 " of his colon, a few spots from the lining

of his abdomen, they removed 11 lymph nodes and 8 were positive, and

there were some nodules in his lower pelvic area but they did not

remove any. They said they did an ultra sound of his liver and found

nothing. When we took him to the Cancer Treatment Center in Tulsa,

they did a CT and they said there was a tiny spot on his liver and

one on the right kidney that was suspicious and needed to be

watched. Both doctors said stage 4 and I read all the doctors

reports but I don's see it. Not surprising as I am not in the

medical field so there must be some hidden meaning there that I am

just not getting. What do they know that they are not telling us.

All I can say is that you are one wonderful person to have gone

through all this and I admire you. I hope Bert does keep his

spirit up and bets the odds. I know from experience that doctors

don't know it all so I am going to keep the faith but it is so

hard that day like today, all I want to do is cry....I love him

so much and I don't know what to say or do....

Thanks for letting me vent.

Judy

> > As some of you know from earlier posts, my husband was just

> > diagnoised with stage 4 colon cancer on June 7th. He is to

> > have a port inserted this week and chemo to start soon after.

> > I need some input into what I am in for. I love my husband

> > dearly and want to be there for him no matter what but I would

> > like to get a heads up on what I should expect from him. They are

> > planning to start him off with 5FU, Levcovorin, Camptosar, and

> > Avastin. He will be on chemo 4 weeks off 2. The Avastin will be

> > given every other week and we are told it will take all day on

> those

> > two weeks. I have read a lot and heard a lot about the physical

> > side effects but what about the mental and emotional side

> > effects ? Will my husband change to someone I don't know? I

> > am so scarred that I will not know what to do, say or react to

> > things he may say or do. He is already upset with me because I

> > will not tell him what to do about taking chemo or to not take it.

> > I don't mind giving advise (as my kids will attest to) but this

> > is one subject that has to be his decision and his alone. I told

> > him I would be with him and fight whatever battle he decides on

> > but I just can't make that decision for him. I know he is scared

> > and I can't imagine how he feels. I am the orgainzer, planner and

> > problem solver in our family and it breaks my heart that this

> > is one thing I can't fix. Any advise or help you can give me

> > will be greatfully appreciated.

> >

> > Thanks for being there,

> > Judy

> > wife of a great man, stage 4 colon cancer, in lympe nodes, small

> > intestins, lower pelvic area.

July 12, 2004