My story

Alorenzo333
Alorenzo333 Member Posts: 1 Member
edited October 2023 in Colorectal Cancer #1

Hi . I was diagnosed with colorectal cancer stage 4 that metastasized to my lungs, and liver in 2018. Actually, I didn't know it metastasized to my lungs until after surgery. I thought I was in the clear after removing the tumor . I definitely was not by far in the "clear" .

My story is similar to a lot of patients. I have added a lot of detail because when I read other patient stories and they say they had "surgery " or had "chemo" treatments, it's not just "chemo" please read between the lines, I know first hand it's not just " surgery" it's even more of what I described here that we've gone through and I think people should understand it's not just a word "cancer" .

Surgery; included a complete REC. And the removal of the tumor and the colostomy. Which I now have a permanent colostomy bag for life. Almost sounds simple, but the recovery was hell, and all the after math that comes with having surgery also hell! The closure of the rectum had opened and worried that infection could set in ; my doctor ordered a wound vac, nurses had to come to my house 4xs a week to change the dressing and clean this 2in wound. I was home with a catheter and that awful wound vac. Let me include having to learn how this colostomy bag is going to work in my life. Degraded and embarrassed and confined to my home, using a walker and doing everything in my power to heal. I'm back on my feet 2 months later. Ughhh... only to resume chemo. Oh, did I mention scar tissue? Scar tissue, that grew around my woman parts (not only scar tissue from surgery, but from countless PAINFUL! radiation treatments ) that started to close my vagina. So, On top of the cancer I'm now having to see a gynecologist to try and "re-open" me . How dramatic is that? I'm young enough to still have a sex life! Aggravated, that I'm having to deal with this situation on top of the cancer that has metastasized to my lungs and my liver, I continue with both treatments, chemo and the gynecologist. Needless to say those treatments were unsuccessful.

Sad and losing hope to ever seeing the life I used to have, I continue doing what all the doctors wanted me to do, Keeping my faith in God.

Before surgery , I had countless treatments of chemo and radiation to reduce the size of the tumor I was told it was working, come to find out I guess those treatments kept it from growing any larger but also did not reduce the size. I also have a large hernia behind my colostomy that my surgeon decided not to remove because it would have been an extra hard recovery.

Since the cancer mets to my lungs (both) I choose to to seek alternative type treatments, this is crazy but true , I took an 8 week break from chemo and started on fenbendoz, the latest fad, it's a dog dewormer that I had to purchase in pet stores . I didn't get any positive results just didn't do anything to me. I resume chemo treatments for another 3 years, this makes it a total of five years battling this disease. And, as everyone knows all the side effects that you get from chemo are not a walk in the park. Neuropathy in my hands and feet, tongue swelling, cold and hot things to the touch it's like sending a shock through your entire body, mouth sores , dry skin that made my feet and fingers crack and bleed so bad I couldn't pick anything up, or dig in my purse, let me not forget diarrhea, constipation, vomiting , nausea, fatigue, hair loss and weakness. All of this to only be told, that chemo is not going to cure me and since I am now not tolerating the treatments "well" like I did The first 4 years, I should consider being put on hospice because I have about a year to live, this news came in June of this year . Of course, I did not want to accept this outcome. I did stop chemo (it got very rough) and right now I feel so good, like I'm not even sick.

I travelled to New York, Sloan Kettering Cancer Center, with hopes of something new and innovative that could save me, but only to be told Once again "there's nothing that can help me".

Today I have a phone appointment with my oncologist, within the past week I'm having a lot of pain in my left leg and right jaw. Not sure if these pains are related to the cancer or not, she may send me for another ct scan.

I'm going to continue reading the posts here, maybe I'll stumble across something that will help me.

I gave this illness to God the day I found out and have in my heart followed his lead, I know He will heal me with his loving hands.

⁹

Comments

  • Rugzie1965
    Rugzie1965 Member Posts: 5 Member
    #2

    I am so sorry to hear of your struggles. I was diagnosed July 7, 2023 with stage IV metastatic colon cancer (metastasized to my liver, lungs, and right hip bone). I had my colonoscopy less than seven years ago and it was clear and I was on the ten year plan. I have no family history either.

    I too put my trust in God’s hands from day one of my diagnosis and I know he has a plan for me.

    Keep the faith. We all share your pain and hope and pray for the best outcome for all cancer patients.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3

    My goodness, this is the second post today, where I have read about people turning to animal drugs to heal them. Is it really a 'fad'?

    Your experience is shared by most of us, and I know that people don't care to 'frighten' other members with the horror stories. I personally posted a list (literally as long as your arm) of every single side effect I experienced during chemo and radiation. It was long and pitiful. I believe knowledge is power, so sharing all the bad, is important.

    God may or may not 'save the day'. Just be prepared for both.

    Tru

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