CSN Login
Members Online: 7

I Need Someone to Talk to.

aprilgreen25's picture
aprilgreen25
Posts: 7
Joined: Jun 2003

Hi. My name is April and my 29 year old husband, Michael, was diagnosed with rectal cancer in January of this year. His first oncologist reccomended that he do chemo and radiation first, and then surgery. He started radiation and chemotherapy treatment on January 30th and finished on March 18th. His PET scan following his treatment showed that his tumor had shrunk and was no longer showing up 'hot' on the scan. It also showed that the cancer had metastasized to his liver. We decided to travel from Indiana to The Cleveland clinic for his surgery after our local surgeon told Michael that there was only a 10% chance to avoid a permanent colostomy. Dr. Victor Fazio at the Cleveland Clinic proved them wrong. He was able to completely remove the tumor and save his normal bowel function with a temporary illiostomy which will be reversed next month. He started his second round of chemo on Wednesday, July 24th which includes a very high dose of Oxaliplatin and 5FU/Lucovrin. The cancer in his liver includes seven small nodules, 2 on one lobe and 5 on the other. This cancer did not appear during his first PET scan in January. I would like to hear from anyone and everyone who can help us through this. We do not have a very big support system as far as family and friends go, so anyone who would respond back and forth with us would be greatly appreciated. I know that we are not alone in this battle, but it feels that way for us sometimes. If there is anyone out there that could also give me some advice on how to help my children, ages 9 and 12, deal with this, that would be appreciated too. Thanks to everyone who took the time to read all of this, and thanks in advance to all who will respond. aprilgreen25@hotmail.com

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi April...I'm here to help! First of all, I too live in Indiana...I didn't want to deal with local doctors, so took myself to the University of Chicago. I had pre surgery chemo & radiation. It too shrunk my tumor. I was diagnosed October 2001. Surgery January 2002. Ten hour surgery revealed it spread to my liver...and two lymph nodes. They removed 40% of my liver. I had a temporary ileostomy. Had 6 months of clean up chemo, and had the ileostomy reversed. Today, I am cancer free. I feel very fortunate. I will be part of your support system. I have three kids (now ages 3, 5, & 8) They were my motivation to tackle this thing head on. THERE IS HOPE! Attitude is everything. My kids never even knew I was sick. In fact, prior to this, I was a very healthy 33 year old female, who never even got common colds! Please e-mail me with any questions, fears, whatever to help you get through this. YOU CAN DO IT! Use this web site to e-mail me anytime...unless the kids are on the computer, I'm on it quite often.

Take care & I'll keep you in my prayers,
Stacy

aprilgreen25's picture
aprilgreen25
Posts: 7
Joined: Jun 2003

Hi Stacy... Thank you for replying to my letter. It really helps us alot to hear about people who are going through this battle and how they have dealt with it. I apologize for my slow response time, but we seem to have hit another bump in the road. Michael started having pains in his chest and his oncologist feared it could be a post-surgery blood clot. They did an an abdominal cat scan and did not find a blood clot, but did find that the tumors in his liver had doubled in size. They also found 2 tumors in his lungs. His oncologist tells him that it is not unusual for the tumors to grow after surgery since the chemo is stopped for 8 weeks, but we were shocked to hear that they had grown so much in that time. He completed his first dose of 5fu/lucovorin and oxiliplatin last friday and the side effects seemed to wear off pretty fast. Now I am just looking for some kind of hope that even though the tumors have grown, this new chemo regimen will help to shrink them. I haven't told my kids about the growth of the tumors because I feel that they are already dealing with so much. They ask me questions that I feel I don't have the knowledge to answer. We are so new to this cancer thing that we don't know the right questions to ask the Dr's. Most Dr's won't state the odds, which I guess I can understand, but I wish they could atleast tell us if this is terminal or not. I know that it seems depressing to know such a thing, but there are things that we would like to do and plan for if that were the case. They tell my husband that they can't do surgery to remove the tumors on his liver because they are on both lobes. They also tell him that the chemo will not cure the cancer, but can put it into remission. He is in Cleveland right now for an exam on how his healing is coming along so that they can schedule an exact date for his reversal. I hope we hear some good news from that, cause god knows we sure need some.Michael is a very strong, healthy person and seems to be handling this better than I am. He even has a sense of humor pertaining to his cancer, although I don't think it's so funny at times. I am glad that I can actually sit down and poor all of this out knowing that the person reading it understands what we are going through. Thanks for listening!

-April

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi April...

Personally, I don't think that "hearing the odds" of beating cancer is ever really good. What will that really accomplish? Treat each day as precious as it is. If you & Michael are given a timeframe, you may concentrate too much on that, and not enough on getting into remission. Remission is a wonderful place...you at least keep the cancer at bay, and can handle things as they come. Plus, if you think about it, by having your attention and energy diverted into treatments, the overall picture doesn't seem so grim. Most of all, for the sake of your kids, don't wallow in the "what ifs" and speculation. There are no guarantees for any of us, cancer patients or even those never diagnosed...I have no special words to make everything better, except for the fact that your support and thirst for knowledge and understanding are priceless...

I'll definitely include you and your family on my "ever-growing" prayer list...regardless of your faith, it certainly cannot do any harm!

Take Care,

Stacy

aprilgreen25's picture
aprilgreen25
Posts: 7
Joined: Jun 2003

Stacy,

You have helped us alot. After reading the many postings on crc, I have learned that "hearing the odds" isn't always the best thing to plan by. I know now that hearing the odds wouldn't help Michael or I plan for anything. We will start taking things as they come and living in the moment. Dwelling on all that I have been has just left me depressed and miserable. We will start being thankful for each moment, good or bad, that we are given.

And thanks for including us on your prayer list. I am certain that with our church and everyone else out there who are praying for Michael that things are in good hands.

Be well,
April

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, April & Michael -

First let me say, YOU GUYS & DR. FAZIO ROCK! Way to show those nay-sayers that it isn't all doom & gloom. Like Stacy, I am also from Indiana (you think it's something in the water?) - but I grew up in Cleveland - West Side.

I know about not having a support network - I was in the midst of a divorce when I got sick. Needless to say I didn't have anyone around at all. This site is a great place to find support and answers to your questions. And I can personally vouch for the fact that Stacy IS on the computer ALL THE TIME! Always happy to lend an ear, a shoulder, answer a question, or just swap a good Hoosier joke anytime.

Attitude is everything and there's a lot of that here at acscsn.org!

Be well...

SpongeBob

aprilgreen25's picture
aprilgreen25
Posts: 7
Joined: Jun 2003

Thanks SpongeBob! It's great to know that There are people I can talk to. We looked for a support group in the Indy area, which is where we live, and could find none. I am new to Cancer Survivors and so far, it has been great. You are certainly correct about Dr. Fazio, he is Awesome! And about the 'Attitude is everything' statement, I certainly agree. I just wish I could find that little magic pill that would keep my attitude possitive and never let it be negative. I guess being a complete pessimist doesn't help matters any. It seems like the good news for us is scarce here lately, and holding out for it can be so draining. Thanks for listening, and by the way, I could certainly use a good Hoosier joke if you've got one!

-April

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

hi april,

There are things that you can do to feel more empowered during this time when you feel there is no good news. Read everything you can on how people beat this thing! It gives hope.
A few of my personal favorites:
Beating Cancer with Nutrition by Patrick Quillin
Your Child Doesn't Have to Die by Leanne Sorteberg
A Cancer Battle Plan by Anne Frahm

If you'd like more book titles that helped me you may email me.

You are so young you two to have to be facing this and I assume with very young children. My heart goes out to you.

peace, emily

aprilgreen25's picture
aprilgreen25
Posts: 7
Joined: Jun 2003

Thanks Emily.

After spending nearly two days on this sight reading every single posting, I have learned alot. I visited all of the crc personal webpages and saw that there are alot of people in our same situation. Reading everyone's stories and hearing how they have dealt with their cancer is
enlightening. I am taking your advice on reading. I
plan to go to the bookstore today and purchase a book or two on beating this thing. Once again, thank you so very much for your suggestions.

be well,
April

starlight1968
Posts: 5
Joined: Jun 2003

April,My name is Sandy And I lived in Salem,Indiana until 2001 when I moved to Texas.I was diagnosed with cancer in Oct.2002.I am adding you and Michael to my prayers and if you ever want to email me my email is sandyj68@yahoo.com.Just know that what you are going through as a caregiver is appreciated.My boyfriend has helped me tremendously.I developed a wound infection and they had to reopen my incision.In order for it to heal properly it had to heal from the inside out.Bryan had to pack the wound twice a day.Which meant he had to put 8-10 4 by 4 pieces of gauze in the hole.It hurt really bad when he did that and that was the first time I ever saw him cry.He always apologized for hurting me and making me cry and he always cried.
You caretakers have a special place in my heart.I am here for you.God bless you and Michael.
Love,Sandy

Lisa Rose's picture
Lisa Rose
Posts: 589
Joined: Mar 2003

Hi April and Michael,

My name is Lisa, I am also living with rectal cancer stage 3 with 10 positive lymph nodes . I had my surgery March 20,2002. My treatment was straight 5-FU (23 treatments) plus the chemo pump for 15 days , as I had a negative reaction .I also had 28 radiation treatments, as of this day I am doing fine.

I have read all your postings and your reply's from everyone on this site and I think of you everyday ,and I keep you both in my thought's and prayers .I also have a son who is 12 years old and I have been honest with him about my condition but it was done a little at a time so it would not be to overwhelming but enought to absorb.

I was so happy the day I found this site because I knew I had found a family of friends who would understand.

God Bless You Both,
Lisa

jatag
Posts: 6
Joined: Aug 2003

Hi April and Mike,
My name is John and I have recently joined the Oxaliplatin 5fu club. I started this adventure in 1999 by being diagnosed with colon cancer. I went to the hospital and had the tumor removed, was released from the hospital and 5 days later went back in because I had an infection from a leak in the bowel..... I left that visit with a colostomy.... then I went into a 6 month chemo/radiation treatment. About 5 months later the colostomy was reversed and I returned to work as a firefighter for a year and a half..... It was a known that the cancer had spread into my lymph system.... so checkups were done regularly ..... I was given percentages and it didn't really make that much difference because I was able to hit all the wrong ones.....:) The bottom line is that I am a fighter and I don't even care to know the odds any more because it just gets in the way of doing what I have to do to survive....... After a year and a half I went in for an Xray and found that the cancer had spread into my lungs. I have been on chemo for about 2 years and things were staying about the same ...... then the spots doubled in size in about 3 months and now I am taking the Oxaliplatin and waiting to see how the spots are going to respond.
It has been a roller coaster ride for 4 years now and I have learned to take life one day at a time...... My family and I agreed in the beginning that there would be no secrets .... and no matter what the questions were the answers were always the truth. I have two nieces that were 12 and 15 at the time of diagnosis.... I never had any kids, but they are like my own and we have a really special bond. In the beginning everyone in the family was scared spitless..... I could see that the adult meetings with my nieces excluded ......(because they were too young) was actually making them feel like I was going to die really soon because they were being left out. I took them aside one day and told them that I was scared because cancer is a scary thing.... and then I told them that anything they wanted to ask me I would answer and I would always tell them the truth no matter what the truth is....... from that day on we have had an even stronger bond because they know they can ask my anything about the cancet and I won't keep any secrets from them..... and it took the power away from the cancer because we all are in the fight together. My whole family has a new appreciation for life and we live each and every moment with a new zest for life because we all know how special it is......
If you ever need someone to talk to you can email me at jatag@comcast.net And Mike if you need someone to talk things over with I am there for you bro..... Keep smiling and fight the good fight...... laters.....jatag

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network