Hello, everyone. I've been lurking for a couple of weeks now and I would really love to get feedback from all of you knowledgeable people!
I'm a 45-year-old single mom (ex husband died a few months ago) of a 7-year-old boy and a little girl who's turning 3 next month. I have one sister, who's not capable of raising children, and my father is 82 years old. I HAVE to beat my disease, or I don't know what will happen to my children.
In March 2018 I had a very upsetting situation happen with my beloved dogs. The following October, my mother died. Two months after that, there was a little bit of blood in my poop. I figured it was due to all of my stress - probably hemorrhoids. Weeks went by with no blood, and then there was a day or two of blood. After that, another 3-4 weeks with no blood. This kept happening - blood for a day or two, then no blood for weeks. Went to my general practitioner, he said it's probably internal hemorrhoids. His referral to a GI doctor took about a month to come in, and when I finally saw the GI dr, he said I probably had polyps, and he scheduled my colonoscopy for October 2019. October! Annoyed by the blood, I decided to see a private GI doctor and pay out-of-pocket. He did a digital exam on me and said I probably had diverticulitis. He said he could do a colonoscopy on my right away for $2000.00, or I could just go to the hospital and explain my symptoms, and the hospital would do the colonoscopy at no charge.
Went to the hospital June 7, thinking I'd be home the following day. They did a CT scan, and the results were shocking - rectal tumor, metasteses to my liver and lungs, omg... what?? But I'm so healthy! Never had a health problem in my life! And I'm too young for rectal cancer! Are you f****** kidding me? Is this just a nightmare that I'm going to wake up from soon?? I spent ten days in the hospital (that's how long it took for my insurance to approve my first chemo treatment), and it was like a combination of jail and hell. To rub salt in my wounds, the hospital bed was so hard that I was literally crying from tailbone pain. During my hospital stay, I received a colonoscopy, a port in my chest, and IV treatment with oxaliplatin and 5FU. I have STAGE IV rectal cancer!!
I returned home from the hospital, and two days later (two days after my chemo), I experienced horrific tenesmus (strong urge to push poop out, but nothing comes out). I was on the toilet for hours! Tenesmus continued sporadically over the three weeks until my 2nd chemo treatment, which was done as an outpatient visit on July 10.
Now, the oxaliplatin dose that I received in my first round was the same dose that I received in my second round. However, the first round gave me no side effects except diarrhea and cold sensitivity. The second round?? Omg, I'm sitting in the chair receiving chemo and suddenly, I've got double vision! I try to tell the nurse, but I'm lisping and slurring my speech! I'm a fine artist with superhuman dexterity, but on that day, I had no control of my hands! I struggled not to stumble when I walked! I felt like I couldn't breathe enough air into my lungs, and my throat felt like I couldn't swallow correctly. I was miserable. Fortunately, all of those symptoms subsided by the next day. My oncologist said that evidently I can't handle the maximum dose, and she's going to reduce it by 30% for the 3rd round. I hate that I won't be getting the full dose, but she said that my side effects were extreme.
Her plan is to give me three rounds of chemo, and then assess whether we can do radiation. She said that when chemo is done at the same time as radiation, the chemo is given at a (even more) reduced rate. Her concern is that such a low dose of chemo wouldn't tackle my metasteses sufficiently while the radiation focused on the 5cm tumor in my rectum.
Of course, we all hear miracle stories, and we all hope to be one of them. I hope that after three rounds of chemo, my doctor will do a scan and see that all my cancer is gone. I don't know what the survival rate is for stage 4 rectal adenocarcinoma, and I don't want to know. I do know that some people (a lot of people on this forum) have beaten it, and that gives me hope that I can, too. I have to, for my children. I'm so sad and scared. I keep hoping that this really is all just a bad dream.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.