Lurking no more...

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krf
krf Member Posts: 98
edited March 2014 in Colorectal Cancer #1
Hi all. My name is Kim and my husband was DX in July with Stage IV rectal cancer. He just turned 38 yesterday. We have three kids- 10, 7, and 3. At first the team at Wake Forest here in NC was going to address the primary with chemo and radiation. They went so far as to tattoo his rear in lining it all up. Then we got the results from an MRI- where initially it looked like he had 4 or 5 liver mets, the MRI showed upwards of 14. We learned this while driving to Duke for a second opinion. The course changed then and he had a colostomy on 8/24/09, leaving the primary tumor in place, and started chemo shortly thereafter. The onc did not want any problems with the primary to slow down the chemo. During the procedure they discovered he has lesions in his peritoneal lining. He had two doses of 5FU and Oxaliplatin and avastin was added six weeks post op. Things have gone well. You all will know there have been med. changes here and there dealing with the myriad of symptoms- the neuropathy affected him instantly and was helped by calcium and magnesium infusions. He had a scan on 10/26 and had a 10-20% reduction in his tumors. So that was the good news. But pretty soon after I was sobbing. You know how you tell yourself that you are not going to expect a miracle, every test has been crummy, not going to get my hopes up.....but then you do anyway? I said to the onc that it seemed like my husband would be on chemo for the rest of his life and he said basically yes, that is what science tells us. But then there is hope. Fast forward to our next appt. with the onc. I guess I am determined to keep asking questions in a different way until I get the answers I want! I asked about what comes after chemo- what surgery, etc. did he think might be in the future for him in curing him. He said he did not think he could "cure" his cancer.
I am stumped by this. I love our onc. and know that he is being honest and is doing what he can, but I can't be at peace with that.
So, sorry for this long post, but I am wondering...
Does anyone else hear those things?
How in the world do you find peace in all this? ( I already have my own meds! ;)
Has anyone been on a path similar to my husbands?

I also want you to know what finally made me post. I had read melissaincali's post a while ago and went to Brant's caringbridge. I was so struck by Brant and Melissa and my husband and I were both heartbroken today to read that he has passed. ANyway, that news made me want to reach out to folks going through the same ordeal.
Thanks in advance.
Kim

Comments

  • SandyL
    SandyL Member Posts: 218
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    Oh, Kim
    I know what you mean about trying to stay strong. It's almost like if noone says it-it won't happen or it won't be. All during the testing and then results of my husbands stage III colon cancer diagnois I was the stoic one and never broke down in front of him or anyone else. Then when we received the results of the second liver biopsy that it was clear=I bawled like a baby. I was so relieved and so grateful to have those results. I sobbed and cried. I hope for the very best for you and for your husband-just know that we are here for you. Someone will come along that give you more help with his diagnosis, I just wanted to let you know how I dealt with my husband's diagnosis.

    Keep asking questions, keep on pushing for answers. And if you aren't happy with the answers you get, get second and even third opinions.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Hi
    Hi, Kim.

    I know this is a frightening time for you and your husband. It's so much to absorb at first. Keep posting here, and we'll all do everything we can to help you.

    *hugs*
    Gail
  • This comment has been removed by the Moderator
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
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    Hi Kim
    Hi Kim and welcome to the board,
    I am also a caregiver and I know how you feel. It is so hard with the ups and downs. I know **** and I feel that when we can get into one day at a time we do best. The fear comes in when projecting the future and no one knows the future. We can all hold on to hope and take each day as it comes and find the little or big bits of happiness.
    So glad you are now part of our community.

    Aloha,
    Kathleen
  • zenmonk
    zenmonk Member Posts: 198
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    hi kim
    My experience is very similar. I was dx'd sept 2007 with a stage 1 rectal tumor that was removed by surgery. Doctors said there was no pathology to indicate the need for any further treatment. 11 months later they found multiple lesions on my liver. They told me that I was inoperable. I was told that without a significant response to chemo I would be gone in about 9 months. My doctor made the gravity of my situation very clear to me. We discussed many different scenarios. I knew that a liver resection wold increase my chances of survival so I worked toward that goal. (what a goal) I lined up multiple surgeons across the nation who were confident they could pull it off. During this time I hade a great response to chemo and became an easy candidate for a liver resection which was done on 10june of this year. I have since had multiple scans all of which show no disease. I am now off chemo until something changes. Anything is possible. Its terrible but I made the decision that the suffering must stop now. The chemo, the side effects, the drugs they all kick my **** physically but I am no longer going to allow cancer to make me suffer mentally. My family has made the same decision. And if cancer wins so be it but I am taking it with me. At some point the suffering must stop.
  • geotina
    geotina Member Posts: 2,111 Member
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    Caregiver
    Dear Kim: I am the caregiver to my husband George who was diagnosed 3/27/09 via colonoscopy with Stage IV colorectal (transverse colon) cancer with mets to the liver and lungs. We were devastated. I say we because we are in this fight together. We were told at that time that there were no surgical options at that time. George has had a very good response to chemo so we are hoping for surgical options in the future. You will see a lot of options discussed on here, RAF, liver resection, chemoembolization, HAI pump and the list goes on. One never know what the future will hold but we are hopeful that these options will be available if George continues to do well. Throughout chemo he was able to continue working, some are not, everyone is different. My best advise is to stay the course and celebrate each little victory, i.e., good scan results, good blood tests, etc. We have not at this time sought a second opinion since what we are doing is working but I do want George to seek out a liver doctor in the new year to see if there is something out there for us either now or in the future. I had my very dark times, like you, but as time has gone by learned to just take it one day at a time and not dwell on the what could happen but what is happening and celebrate the little victories. I also read of Brant's passing, I have followed their jounrey. Brant never caught a break with his cancer. Why someone does well and the next person does not catch a break is heartbreaking. Read the caringbridge site for "keithfriend", he was faced with the same and 1 1/2 years later is clear of cancer, but continues to treat. Keith is 41 years old and a true inspiration. After reading his journal you will be full of hope for the future. Take care for now. Tina
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Sorry
    So sorry to hear of your husband's diagnosis. You have come to the right place, especially for support and answers. There is usually someone on the board at all times of the day in case you have a question. Keep the hope going, there is always a possibility that new treatment is available. Going for a second, or third opinion is always an option too. It is good that you trust and like your doctor, but stress that you would like other options too.

    Good luck and let us know how your husband, and you are doing.
  • krf
    krf Member Posts: 98
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    Sorry
    So sorry to hear of your husband's diagnosis. You have come to the right place, especially for support and answers. There is usually someone on the board at all times of the day in case you have a question. Keep the hope going, there is always a possibility that new treatment is available. Going for a second, or third opinion is always an option too. It is good that you trust and like your doctor, but stress that you would like other options too.

    Good luck and let us know how your husband, and you are doing.

    Thank you all so much!
    Wow, thank you all so much, for welcoming me, for sharing your stories of hope. It is so hard sometimes to reconcile the feelings of hope and fear- it feels like admitting the fear shows a lack of hope. I have to keep reminding myself that these two feelings can coexist.
    I will post more later!
    Thanks-
    Kim
  • Shayenne
    Shayenne Member Posts: 2,342
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    krf said:

    Thank you all so much!
    Wow, thank you all so much, for welcoming me, for sharing your stories of hope. It is so hard sometimes to reconcile the feelings of hope and fear- it feels like admitting the fear shows a lack of hope. I have to keep reminding myself that these two feelings can coexist.
    I will post more later!
    Thanks-
    Kim

    Hi Kim!
    Welcome to our family! We're so glad to meet you! I can't say much that everyone else has said, but NEVER lose the hope! I am Stage 4 cc with multiple mets to my liver, and remain inoperable, the chemo regimen Folfiri with Avastin did help in shrinking my tumors, but still not enough to have surgery. Hopefully one day, it will happen. They are taking me off the Irinotecan to help build my body back up since it's been about 10 months of it every other week, with breaks in between because of all the surgeries I've been through (I have a colostomy, and have had a few blockages as well), so basically this year for me has been really tough, weeks at a time in the hospital, chemo fatigue, but finally, I am feeling better, and also was asked to be in a show (I do community theater) and am in it this weekend, (if we don't get snowed out LOL), my first show since being diagnosed, a return for me, since it's been awhile, and hopefully will be able to be in more...that's my exercise lol...

    But anyway, in January, I'll be just doing the Avastin and 5fu every 3 weeks, till we are able to check out the other options down the road, since the chemo has beautifully for me as my onc put it..well, if it's so beautiful, why can't I have these suckers removed from my liver LOL...sheesh, but I won't lose my hope, live every day as it comes, and you'll be fine!

    I wish you both the best in your journey, and please come here often, it really helps, this is a great family here, full of support and love, and are open for everyone to come join with big hugs!

    Hugsss!
    ~Donna