Hi Donelle,

[Guest guest]

Donelle,

I've just been catching up on the posts and not

exactly sure when you posted the update on Glen, I

caught it as an add to someone else's post, but I,

like my friend, Joyce, have been where you are right

now and just want to offer whatever I can to help you

through this horrible time. You definitely have my

prayers for God's sustaining grace and peace.

Don't know if you remember me, I don't post very often

anymore. I said goodbye to my hubby, the love of my

life 11 months ago, just a year after his advanced

stage IV diagnosis with this dreaded disease. He had

mets to the liver and lungs and was 'inoperable' at

diagnosis. He did almost every available chemo regime

in an effort to control the symptoms and allow him

more quality time but we always knew that it would not

be long. The chemo did alleviate many of the symptoms

until the tumor burden in the liver became so great

that it could not process the chemo any longer.(All

chemo drugs are processed through the liver and

eventually take their toll.)At that time he went into

liver failure and was gone in a matter of days. I

remember the night the onc called us and talked

literally for hours explaining the situation and

preparing us to enter hospice care. We thought we had

2 months, it turned out to be less than 2 weeks.

I am not telling you this to scare you, but to say:

make the most of every minute you have, Lynn,my

husband, used the term " making the memories we want to

keep " and that is so important. Those are the good

memories that give me and our children, the strength

to go on with life because we know that is what he

would want us to do.

I know that at this point it is sometimes hard to post

your real feelings. I know this board can handle it,

but don't even think twice if you ever want to email

me off-line. I'll always listen and do what I can to

help.

Hugs & Prayers

H

--- Joyce joybrown@...> wrote:

> Hi Donelle,

> It' Joyce from the Yahoo colon cancer site. My

> heart bleeds for

> you, I know exactly what you are going thru mentally

> and physically.

> As you know I lost on June 11th. I still

> have not accepted

> it and probably will not for a long time. He lived

> for 5 years with

> the colon cancer and he was called the enegizer

> bunnie by all his

> doctors and friends. Our Oncology nurse told him

> she did not know

> what " I " was doing but it sure was working.

> Only after his death did my friends tell me that he

> told them he was

> only fighting this monster because he was concerned

> for me. I took

> a big financial hit when he died.

> Donelle, I knew he was going to die and thought I

> was prepared but

> you never are. I will say this to you, it was much

> harder to deal

> with while he was alive than it is now. It seemed

> that he no sooner

> got over one crisis than he was facing another. I

> used to beg God

> to let us change places. It is so hard being the

> caregiver when you

> love someone so much.

> The last 6 months were particularly hard. He would

> not take his

> meds and you know the cost involved. He also had

> diabetes and would

> OD one sugar. He had DVT to the leg a yr ago and I

> watched his

> lower leg swell and beg him to get it up in the air

> and he would do

> the opposite. Now that I look back I think maybe he

> was trying to

> speed the process up.

> The strange thing is that I promised him back in

> January I would not

> push him or try to find more treatments or

> procedures. The

> Oncologist told him that he never let him do what he

> wanted as far

> as treatment and would like for him to let him try

> the Oxaliplatin

> and whatever else it included. I told him I was

> staying out of that

> decision. I even told him I personally would not do

> it.

> I almost dropped my drawers when I called him at the

> hospital and he

> told me that he agreed to give it one more try. The

> Onc told me on

> the phone he thought he could buy him another year

> or two.

> told me he told him it bought him a 50 50 chance. I

> silently

> thought what a crock. I dearly love our Onc but

> had soooo

> much going against him that that was totally

> impossible.

> He had been in the hospital for 6 days and on Friday

> he was feeling

> a little better. Both lungs were full of blood

> clots and he should

> have died two weeks before. I kept telling the

> pulmonary doc that

> it was not another abscess in the lungs but he was

> in the process of

> changing partners and then took a vacation. He had

> put him on a med

> called Tobi for cystic fibrosis that cost $3000.00 a

> month. I tried

> to tell them he could not breath and felt like he

> was sitting in the

> bottom of a swimming pool and would turn purple

> gasping for breath.

> Long story short, once we got him in for his

> scheduled visit they

> took one look and the nurse was pushing him in a

> wheelchair and I

> was pushing the oxygen. We walked about 2 blocks

> thru underground

> tunnels to the hospital. ONce they got the CT scan

> back they could

> not believe how many clots were in both lungs. They

> went flying to

> radiology to put a filter in the artery to the

> heart. After they

> did it he said he was sorry he let them do it. He

> said he would

> have rather had one good hit and be gone. See the

> change of

> emotions going on in their head.

> I had gone to the hospital Friday and spent the

> whole day with him

> and we practiced walking because he did not want to

> come home and

> not be able to walk without getting winded. We

> watched the

> helicopters land on the heliport and he teased that

> it was probably

> something he had paid for. We ate and shared our

> dinner and watched

> a movie. I left knowing he had a good day, probably

> the best one in

> a while, and felt happy for a change. He even I

> still would have

> lost him.

> I hate this dam disease and only go to the site a

> couple of times a

> day to look for familiar names. The site just does

> not seem the

> same to me anymore. Once died it seemed all

> of the

> interesting messages vanished. It used to be so

> informative but

> maybe I exauseted all the new treatments or maybe I

> was just plain

> worn out.

> My heart goes out to you because you are going thru

> the most

> difficult time of this disease. It is just plain

> heart breaking.

> Please email me anytime if you just want to talk. I

> don't know if I

> can help but will sure listen. I will even give you

> my phone number

> if you want to call.

> Take care of yourself as much as you can. Thats

> easier said than

> done, I know I have been there and done that.

> Joyce

>

>

>

>

__________________________________________________

[Guest guest]

Grandmommyandme@... wrote:

In a message dated 7/20/2005 9:25:04 PM Eastern Standard Time,

mikee4420@... writes:

Hi,

My name is mike, my wife has crc. I found and joined this group a few

days ago.

she is 44. She had an abdominal hysterectomy on 4/8/05, and the

pathology report came back with malignancy that was later determined

to be colon cancer. primary tumor was in transverse colon, and was

softball size. resection was done on 4/15/05 the tumor involved the

omentum, which was also removed.

mets in lungs, and liver. After the resection CEA was 72.

Chemotherapy was started on 5/13/05 she is taking avastin,

oxaliplatin, and xeloda. she is now 5 days into her 4th treatment and

her CEA is now 27.

she is very determined, and has tolerated the treatment very well.

there has been nausea despite emend,zofran,and anzamet. she has drank

diet canada dry ginger ale by the case(room temperature of

course),chewed on crystalized ginger(which she says really helps

sometimes) the emend and zofran really seem to help for the first

week, but the second is tough for her she says that the anzamet

doesn't seem to do anything for her.

As far as the Oxaliplatin goes, she has the cold sensitivity that last

for about 10 days (she was told 3-4 initially) and she has an odd

neuropathy that her onc said she had never heard of, her eyes feel

like they are being shocked if she cries for about one week after the

infusion. She also has a shocking, pin-prick like sensation when she

first taste anything. the sensation stops after having thae food/drink

in her mouth for 20-30 seconds, and then doesn't return untill she

starts eating something else.

We were both blindsided by this, and even now after more than 3 months

it doesn't seem real.

Hope this helps someone. please feel free to write me direct with any

questions you have, but please use mikee442xx@... (remove the xx)

Mike

Welcome to our group Mike and wife..so very sorry you had to find us for the

reason you did, but so very glad you found us!!! We are here with lots of

info (check out the main webpage and databases for tons of info). You are

free to vent, cry, scream...whatever you need to do and we'll be here for you!!

Maybe your wife would like to join in, too.

" Blindsided " ...what a great word!! I think many of us were blindsided by

this disease...many with no former family history of the disease and many with

not even an inkling that a Cancer might be growing inside our bodies!!!

There are patients on the list, as well as caregivers and SURVIVORS, so you

have come to the right place, Mike. The patients are awesome FIGHTERS, and

the caregivers FIGHT in their own awesome battles. Glad to have you with us.

You and your wife will be added to our daily prayer list!! What is your

wife's name if you don't mind telling us. Also, feel free to tell us more

about

yourself and your family... we like the fun stuff, too!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03 removing 9 in. of colon including cancerous tumore and

3 of 22 removed lymph nodes were also cancerous.

Infection set in at surgical site...Open wound for 2 months, chemo for 8

months

Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??)

10/04 Severe lower ab pain unable to eat, colon shut down, hospitalization

w/morphine 8 days. Sent home with basically no diagnosis. Possibly the cancer

causing the pain.

Ascites (Fluid build-up) and Paracentesis (draining) on a regular weekly

basis

11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

Mid Dec. 04 - CT. Scan shows largest tumor on liver has reduced 1/3,

remaining 11 tumors stable; no growth. Chemo is working...Yippee!!

02/05 Continued bi-wkly Ascites and Paracentesis may mean chemo no longer

working.

Emergency CT. Scan performed. Tumors are reducing in size, some as much as

half!!! Chemo is working!!!

Found a blot clot in the vein going in to the liver!!! Waiting for MRI so

GI Dr. can decide to treat with meds or surgery. Onc. now believes the blood

clot is reason for the continuing Ascites.

March 04...Lovamax shots nightly to dissolve the clot and open the portal

vein going in to the liver, hoping the liver will function more normally.

Still not sure if blood clot or tumor. Why? No answers.

ICU hospitalization twice..total of 9 days out of 14 for varices bleeding in

the esophogus. No chemo now for 6 wks. Drs., Liver specialists, and GI

specialists working on a plan. Ascites is doing more damage than chemo to

Glenn's

body. Have to " take a chance " (Drs. words) and do the shunt surgery and

very SOON!!

" Chemo Vacation " to build up Glenn's body for whatever!!!

Liver Spec. does not agree with GI Dr. re: shunt surgery...now what??

TRYING TO KICK BUTT with this darn disease!!!