Newbie-my story CRC

I posted this as a response to someone newly diagnosed. A member suggested that I post it here. It's a long read.

 

 

I'm new to this forum but unfortunately not new to rectal cancer. I was diagnosed Stage IV metastatic rectal cancer spread to liver and lungs January 2014. Immediately had a port placed, colostomy surgery April '14, Abdominoperineal Resection surgery November '14. I started radiation treatments every weekday for 6 weeks and chemotherapy every other week where I am infused 5-6 hours one day, take a pump home getting chemo drugs for the next 46 hours continuously,then return to have the pump disconnected. I wish I knew all the chemo meds I have been on but I just remember a few but it seems most everyone has relatively the same chemo regime. After 9 months I was NED. I was thrilled, convinced my Oncologist was a genious and I was a walking miracle. I rang the bell, got the Tshirt! Haha. I went off chemo October '14 so I could have my APR surgery. The surgery was brutal. The plan was the surgery would be performed laparoscopic but the radiation had caused the organs to be fused and gummy (surgeon's words, although my radiation oncologist disagreed) so they had to open me up. My rectum, anus, and sigmoid colon were removed as well as lymph nodes, a full hysterectomy and just for good measure, my appendix. It was a difficult recovery but I was cancer free so I did recover. I had a few complications, mainly a couple of staph infections which meant more time in the hospital. I had my quarterly PET scan and I had two mets glow in my lungs. So, more radiation and more chemo. On my third quarterly PET of 2015, those mets were no longer active. I asked my Oncologist if I could stop the chemo treatments so that I could have bladder sling surgery and hammer toe surgery (back to back, same operating room) in December '15. He agreed and I scheduled the surgeries for the 7th. The bladder sling was a success. The hammer toe, not so much. Anyway, they did not put any type of compression garment on my leg that had the foot surgery. I ended up with deep vein thrombosis, another hospital stay, in my left leg. Then that blood clot broke off and traveled to my lung, another hospital stay. Fortunately, it settled in an area that doesn't give me trouble. I had an IVC filter placed. In the meantime I had my 4th quarter PET scan. Well, I had two mets in my liver this time. Back on chemo, but at least the chemo regime was working. I'm not done yet, more problems. Sometime between May and June of last year I started putting on about 10 lbs every 2 weeks. Now, I'm already fat so I am not pleased. My ankles started swelling, then my legs. I was feeling extremely poorly so my daughter convinced my Oncologist to go ahead and put me in the hospital, administer IV antibiotics and get out quickly because he was going out of the country and wouldn't be here to treat me. I continued to gain over 100 pounds of water weight. They didn't know why. It took me 5 days to convince them to do a Doppler Ultrasound on my legs. I had bilateral DVTs in my legs. They were so heavy and so swollen I could no longer walk. They had to catheterize me. Luckily I had my colostomy so I didn't have to suffer that humiliation as well. For 2 months they had me on heparin and diuretics. I hadn't lost a pound. It was a horrible hospital with incompetent doctors to say the very least. They discharged me to home without solving any of my problems and no medical help or equipment whatsoever. Mind you, I still cannot walk at this point. It took 4 men to get me in my daughter's car. I live in Houston, TX so I asked my daughter to drive me to Methodist in the medical center. I was admitted in the ER and in surgery the next morning. My legs were 100% occluded from my knees down and my IVC filter was completely clogged from the top and bottom and I had multiple blood clots in my abdomen. The first hospital nearly killed me. I spent 3 days in ICU. Then after recovery I had to go through physical therapy. Finally got to go home after 3 months in the hospital. I take an injection of blood thinners every day without fail, for the rest of my life.
During my stay in the hospital I was off any cancer treatment. After I got out I had a PET and I then had 4 active Mets in my liver and 4 active Mets in my lungs. Back on chemo immediately. My latest scan shows one met gone completely in the liver and all but one met in the lungs, which has stabilized, have shrunk in size. Chemotherapy is still working, YAY!

Now, that's one helluva story and unfortunately it's true. I didn't type all this out to scare you or freak you out which is probably what I have done. I'm just letting you know that no matter how many times the beast knocks you down, get up, shake yourself off and keep moving forward. I survived all that mess above. I'm still having difficulties walking and stamina isn't what it used to be but I still live my life how I want.

So, in conclusion, no matter your diagnosis, stage, treatment, etc., GO OUT THERE AND KICK ITS BUTT!

Sorry for the long story, just wanted you to know, we can handle a lot!!

Good luck!!

Please, if you have questions, just ask.

Cheryl