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Hello family and friends. I decided to create this account so that I can share my journey with you all in a convenient manner. It is getting too difficult for me to individually message everybody with updates to my health situation. I will give a brief overview of the last 4 1/2 years and catch you up to speed. After that I will try to post weekly or biweekly updates on my current health status. Thanks for joining me on my journey!
In May of 2012 after having symptoms for about nine months including weakness and bathroom issues and my skin turning pretty much yellow, I decided to go to the ER and have an MRI and some blood work done. The ER doctor sent me to a specialist first thing the next morning to get checked out. After several tests and a colonoscopy I was diagnosed with stage III rectal cancer. Aggressive chemotherapy, radiation therapy and surgery were recommended immediately.
Before starting treatment I was in unbearable pain. I was never so grateful for pain medication in my life! It was hard to leave my home before starting treatment. My only outings before treatment started were to the hospital to get prepped for treatments. This included installing my portacatheter or "port". A port is an implant in the chest area that is connected to a line that feeds into an artery where a person can receive fluids and medications and it goes directly into their bloodstream. This helps to save the veins from constantly getting poked hundreds of times over the course of years of treatments. My next step was to get measured for my casting that I would lay in on the radiation table every day. This was specifically molded to fit my body so that I would be in the exact same position every day to ensure that the radiation lasers would hit the spots they only needed to inside of my pelvic area.
In June of 2012 I started aggressive chemotherapy . A cocktail of different types of chemo called FullFox. I received this 24/7 for six weeks straight through my port. Along with chemotherapy I received radiation five days a week for six weeks.
This regimen was tolerable but very difficult nonetheless. I was nauseous and lost some weight and hair after a couple of weeks. The worst part about it was the side effects from radiation. My entire pelvic area became inflamed and I had burns on the skin that would bleed . About halfway into the radiation treatment I had to start having my meals and fluids in the bathroom because it literally went right through me. It was hard to keep weight on because of the fact that my nutrients weren't able to absorb like they needed to. The good thing about this treatment however was that after the first week I experienced tremendous relief because the tumor had significantly shrunk thus relieving some of the pain.
Side effects are a huge part of cancer treatment. They can occur at unexpected times and they can be quite damaging. A few weeks after I had finished the regimen, one day I started losing a lot of large blood clots from my "backside" and my "lady part". This terrified me as I thought I was hemorrhaging. I went to the emergency room and the doctors concluded that I had a fistula. A fistula occurs when damage to organs create holes in the organs and they connect to one another.. Get ready for this part folks because it is not easy to hear about but...the radiation damage caused me to have a hole that connected my rectum to my vagina. So I was losing fecal matter out of the wrong orifice. Not pleasant at all but since I was going to have surgery in a couple of months from then just had to suck it up and deal with it until this could be corrected.
After recovering from treatmet I then had surgery in October of 2012. This was to remove what remained of the tumor matter and also I received a colon resection so I now have a permanent colostomy. A colostomy is an opening in the abdomen where your intestine is pulled through your tummy and the doctor creates what is called a stoma out if the intestine. An appliance is attached around the stoma with a disposable bag. It's a new way of going "number two". Since I no longer had a rectum or an anal muscle, this left me no choice. I am used to it now but it took me about one year to accept this mentally and to get used to it physically.
In January of 2013 I started post surgical chemotherapy as a precaution to make sure we would get any flyaway cancer cells that might've remained in my body. So every other week for six months I went to chemo infusion and was on the same regimen as in the beginning of my journey, minus the radiation. Part way through this course of treatment a very big and unfortunate mistake occurred. The pharmacy that would set my chemotherapy pump made a huge error. Normally the pump was set to release chemotherapy into my line over a 46 hour period. Someone made a mistake and said it to doubletime so infused over 23 hours instead. I knew this because my pump beep to let me know it was empty. I knew that was not right so I called the home care company and they told me to go straight to the hospital. When I got to the hospital and told him what happened about 10 doctors and nurses walked into the room to greet me and talk to me about what we could do. That really scared me because that's a lot of people out once. When I asked what was going to happen to me the response was we have no idea. That was even scarier. I was immediately admitted into the hospital and given a stack of paperwork to sign. paperwork but give me permission to receive an unapproved by the FDA drug that would hopefully break down the chemotherapy in my system and flush it out so it could not harmony. The docs were worried that I could either die or become very ill from this very quick infusion of chemotherapy. An anecdote After 8 out of the 12 cycles I had to quit one of the drugs called Augsalliplatin because I was suffering from neuropathy which is when you lose nerve feeling in your body. I had started to lose feeling in my toes and fingers and the docs were afraid if we didn't quit the one drug that I would never get the feeling back. Luckily within a year I could feel my fingers and toes 100%!
I am one of the fortunate people in cancer treatment that gets to keep a little bit of my hair. This is a bit emotional for me because I always loved my very long, thick hair. It used to be down to my lower back but it is now up above my shoulders and very thin. I use a special scalp powder made out of keratin and it is the same color as my hair to mask the bald spots and I also wear hair extensions. This really helps me to feel like myself and to keep me positive. One of the most difficult things for people that are afflicted with cancer is that it changes the way you look so much and in turn causes you to become very sad. Maintaining a positive attitude with a life-threatening illness is vital in order to fight the disease and try to live life as normally as possible.
In the summer of 2013 I had a follow up pet scan to check and make sure all the cancer was gone but unfortunately there were two, 2 cm nodules right where the original tumor had been. We did a biopsy hoping it was something other than the cancer but unfortunately and sure enough the cancer had either returned or these nodules had been hiding behind the large mass the whole time and were overlooked. Between August and September 2013 I was given a chemo pill called xeloda along with pin point radiation treatments. I did this for one month. Unfortunately my follow up scan showed that the tumors had shrunk in half but did not go away completely.
The doctors wanted me to continue with a maintenance chemo therapy program but I declined. They told me it was not a cure but just a chance to prolong my life if I chose to go to chemotherapy route. What I wanted was surgery but unfortunately the area at the tumors were in was a very dangerous area to do surgery on. I searched far and wide only to be turned down by about 30 doctors. However my radiation oncologist along with myself located a surgeon and his team at Memorial Sloan-Kettering in Manhattan New York and they were willing to take a chance on me!
I ended up having a 13 hour surgery in June 2014 at Morial Sloan Kettering with the five major doctors whom each played a very important part in my surgery.