ibcarolek's Journey with Colorectal (Colon) Cancer

Caregiver: Colorectal (Colon) Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Male, Age: 60, KRAS mutation positive: Don't Know, BRAF mutation positive: Don't Know, Stage IV

  1. 1
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 5 years ago
    ibcarolek's Avatar

    Oh No

    My longtime boyfriend was having stomach problems since 2010 (2 years ago) and went to the doctor. Doc said "eat more fiber. you have diverticulitis. Take these antibiotics...." He took the antibiotics and got better. Until he got worse. Throwing up like I've never seen. Doc said "eat more fiber, you have diverticulitis. Take these antibiotics..." He got better. Until he started to have breathing problems. Doc said "you have asthma. take these pills/inhaler. You'll be better in a couple of weeks." But before two weeks were up, we were in the emergency room. He could hardly breath and was in incredible pain. His right lung had collapsed, he was severely anemic and had a bad case of pneumonia. In the end, it wasn't diverticulitis nor asthma. He had stage 4 colon cancer, which had spread from his colon to liver to lungs. Our nightmare now had a name. It was not Diverticulitis!

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  2. 2
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 5 years ago
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    No Cure - just prolonging life

    Oh No

    I didn't go in with him for his initial consult with the oncologist. I wish I had...I have since learned it's helpful (although I question that after the last visit). He came out in dispair, crying. He never cries. It's 2012 and there's no cure? Nothing but chemo that can be done and that won't make him better? So we went on a search and destroy mission of trials, cancer centers, universities and ..... then we were just sad. What do you do when you don't have the power to fix things or find someone who can?

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  3. 3
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 5 years ago
    ibcarolek's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    He's on chemo every other week, for 3 days. During chemo his voice gets hoarse and he's tired. He's sensitive to cold and gets the tingles. A couple of days later he's better and by the end of the next week he's like new (except for the nose bleeds and very dry skin - and he can't have anything very cold to eat or drink.) We laugh about how it IS possible to live without ice cream. Who knew??

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 5 years ago
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    CEA is down to normal!

    Celebration

    CEA is down to normal. It spiked with the start of chemo, after which it's just been coming down with each blood test. Just in time for Xmas - it's normal. Yay!

    3 Comments
  5. 5
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 5 years ago
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    What to do? Insurance, money, stuff

    Decision Point

    We talk to accountants and attorneys about if we should get married, financial stuff and things. Not romantic, but realistic. Advice is not to marry, but there's power of attorney's, living wills, and other stuff to do including filing for SSDI. He starts feeling better, so we (or at least me -) know he's getting better and chemo's curing him (I'm up for miracles!), and none of this paperwork is needed. But then the cat scans since starting chemo come back, and there's no change. Really? I'm in disbelief and now I'm leaving the doc's barely holding back the tears. (This is why I should not have gone with him on his last doc visit....) How can you get better and not BE better? We haven't done the paperwork yet - a new normalcy has taken over. Friends no longer ask how he his doing, I no longer take time off work and my working hours are getting longer. Yeah, life goes on. When it's not his chemo week, he's like new. Ok, maybe certified used =) It's likely to be our new years resolution to get the papers in order.

    1 Comment
  6. 6
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 4 years ago
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    scared

    Oh No

    John's been getting stomach cramps for many months. They get quite severe and involve loud gargling and end with violence out of either/both ends before the event ends. Up until this last time, events lasted about 2 days. Trips to the hospital up until now haven't found anything wrong....Onc hasn't either although his chemo's been changed, without relief. Last week he started cramping on Monday and by Wednesday he felt better until he ate again. Then it was off to the hospital ER. They didn't really find anything except perhaps colitis and this time gave him two doses of morphine to help with the pain and a lot of iv to rehydrate him. They found his white blood count super low (odd as it was less than a week since his last blood draw), and they hospitalized him when his fever spiked from 99 when checked into the ER to 102 after a few hours. Once admitted they found he had c-diff and continued him on antibiotics and white blood cell boosters. After some debate between doctors of whether to keep him another couple of days or to let him go, they released him after two night's stay. The cause was "it's either the cancer or the chemo". He's been on chemo for 15 months and it's to be that way forever. He's sick of being sick and I think he's scared - I'm scared. I'm very scared and don't know what the future holds. John's also very sad. I don't know what to do to cheer him up..... I'm fortunate to work for a great boss who lets me take time off and drop things at a moment's notice, but I know it's wearing on my team. Everyone's so understanding at the beginning but now I think they are tiring too of 'being self directed'. . I'm thinking of stepping down and finding a simpler position, but the pay decrease will come hard as John's no longer working, and I expect his employer to discontinue his medical at the end of the year (again...great support in the beginning. We got a reprieve last year, but I'm not sure we can continue to expect their support...I hope I'm wrong!) I know there's nothing anyone can do to change the situation, but I wanted to share. I wish I knew 'what next' but it seems no one has had these cramping situations online or where John is are being treated. I'm thinking of having his records reviewed by a Gastro doc. I think doing something may help with the fear.

    1 Comment
  7. 7
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 4 years ago
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    Brown Vomit

    Oh No

    It's been less than a week since we last journeyed to ER. We've been so often and through so many shifts, we're recognizing nurses. It's also been less than a couple of days since talking to the Onc, who said take two weeks off chemo and let's try cocktail #4. Yet, nothing is coming out the backside and while he's getting skinnier, his stomach is bloated and he's not losing much weight.... Then two days after talking to the Onc John started vomiting brown vomit - yet nothing he ate had been brown (ie, vanilla Ensure). Violent vomit, over and over again, hourly until we went to ER. After yet another xray and catscan finally they said "classic bowel obstruction" (Duh! We've been saying that since May!). His colon is more inflamed than last week. If it doesn't calm down and start working, there will be a decision point. They won't operate if it's the tumor....so we're praying it fixes itself. Odd that from the xray and catscan they can't see the block - they can only see the inflamed colon and the built up 'layers' of fluid and gas. They ng tubed him (high, very high pain) and it's very uncomfortable even after several hours. He was sad before and now, he's just so horribly sad and sick of being sick. He still talks about the future, but just wants to go home and end treatment. If I was scared last week, I didn't know the meaning. I so now know what being scared is!

    3 Comments
  8. 8
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    almost 4 years ago
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    Problem with doctor

    Oh No

    John's onc called for a 'palliative meeting' and the 'pallative' doctor joined us and basically got aggressive with going into hospice. We want the facts about his status - but instead got a hard sell on the wonders of never going to the hospital and any drug you want to keep out of pain and it sounded like you'd be bed ridden at home but wonderfully high. We may live near Berkeley CA, but that's not our life style....Afterwards even the social worker confided how surprised she was at the discussion and thanked us for saying we weren't ready. But I'm not sure what lies ahead of us one way or the other.

    0 Comments
  9. 9
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    Exploratory Lap resulted in a right hemicolectomy that removed the tumor and the appendix which had been causing the radiologist concern, but for some reason the HMO didn't want to remove it earlier. Everything worked out as the surgery removed both it and the tumor! They didn't touch the tumors on the liver and of course neither those in the lungs, but having the big boy out is a huge win and should stop the stomach cramps and vomiting. Oh, yea, and it extends his life longer than a week since the tumor had grown to full obstruction and he could no longer eat. Surgery was 4 hours and recovery was 2 (rapid heartbeat keep him in recovery an extra hour). Pain was mitigated by morphine drip/on demand. After a week in the hospital, staples were removed, and John came home - Alive and better than he had been for a while. While I wonder why they didn't operate before - I'm glad they did it. It happend in the nick of time.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    1 Comment
  10. 10
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Alive and well at Christmas!

    Celebration

    Thanksgiving provided us a lot to be thankful for, as the doctors relented from pushing hospice with John unable to eat and mere days to live to them finally agreeing to operate and remove the tumor which was obstructing his bowel. John spent Thanksgiving in the hospital, alive but in pain since it was major surgery to remove the right side of his colon. But it was life saving! And now a month later, the pain has gone and we are together, able to celebrate Christmas with friends and family, enjoy turkey with all the trimmings, and all the blessings we appreciate more and more each day. This year we celebrated Christmas on Christmas, another treat not to be taken for granted as last year we celebrated a week early in order not to break the chemo schedule. There's just nothing now to be taken for granted! The surgery didn't cure John nor put him in remission...he is plagued with a lot of coughing and will be starting up chemo again next week. He's enjoyed the break from chemo in the meantime, and he's not giving up on getting better. In the meantime, we hope every day the cancer will give up and give in to his healing fight and just go away!

    1 Comment
  11. 11
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Rash: dermatomyositis?

    Symptoms

    John's been w/o chemo since early November when he was first admitted to the hospital. He's supposed to restart it soon - but now it's the end of Dec and his left side of his forehead/face has broken out in a blotchy rash. It's spreading by day (darn holiday makes its hard to get a doc appt) and when I google colon cancer face rash....I get dermatomyositis. I'll know in a day or two if this becomes an Oh No journey update.... In the meantime, hope it's nothing!

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  12. 12
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Cancer has spread/Metastasized

    Oh No

    Rash bad. CT scan confirmed cancer has spread to the brain.... Radiation to fight that front next week.

    2 Comments
  13. 13
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Cancer has spread/Metastasized

    Oh No

    John's cough is getting worse, and he's shorter and shorter of breath. He has to spit out mucous after coughing and now it contains blood spots. Doc says it's fluid around the lungs or a blood clot...going for the fluid drain tomorrow. Hope it eases the coughing and shortness of breath. Meanwhile John keeps losing weight (and I gain from the stress!) Things just keep getting more and more scary!

    2 Comments
  14. 14
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Severe shortness of breath

    Symptoms

    You know that feeling you get when you ride a roller coaster and you're going down hill fast...that's now the worse feeling in the world to me. Even after having 3+ liters (equivalent to more than 4 bottles of wine) drained from just his left lung, John still has a hard time breathing. He doesn't have an issue processing air - his 02 in his system is good. It's just the act of breathing that is hard. He's now on oxygen though, in part it helps the anxiety and panic when he coughs and feel like he can't breath. Even with 02 he can barely walk any distance. There doesn't seem to be anything that can be done, so we're very very sad.and scared all the time. His appetite is good (especially around Oreo cookies and milk!). Yet he goes in for Erbitux weekly and doc says that's working based on the CEA scores. Last week John could walk to the infusion center and he wasn't on O2. This week I had to take him in a wheelchair. It seems to be a very steep ride right now.

    0 Comments
  15. 15
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Lost loved one

    Loss

    Last night John left his cancer wrought body and is finally at peace. His journey is over. John fought determinedly for nearly two years against this dreadful disease to the very end - he was horribly tired and very short of breath. Yet he still insisted on going to chemo on Friday. It's hard that his fight didn't see gains against the enemy - but it's comforting to know he doesn't have to keep on fighting so hard -- he fought so hard! -- and he can wake up refreshed at last. John will be remembered by his family, friends and colleagues as a loyal, thoroughly honest, decent human being. I wish you all could have known him rather than just of him and his symptoms and disease....you'd have loved him too. He was the love of my life for 18 very solid and wonderful years. Over the past year plus you have offered wonderful suggestions and ideas from the best driving gloves, toothpaste and Valentine's Day presents to how to handle scary things like breath stealing hiccups. I got lifesaving support from this community when John had a bowel obstruction. You were a tower of strength and objectivity and hope! Your kind, encouraging comments and input are deeply valued and very appreciated. Please keep the community strong. Thank you all on behalf of both John and myself from the bottom of my very sad heart.

    6 Comments
  16. 16
    • ibcarolek
    • Experience with Colorectal (Colon) C...
    over 3 years ago
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    Decision Point

    Good bye...updated profile to no longer send updates. This is all too sad and I don't want to make others sad and lose hope... I regret my last postings but can't take the action to delete them - they are the truth as I know it. I'm not sure though if they are helpful and I think my grief is coming through, which I don't want. Thank you for all the help and advice given.

    0 Comments