May 11, 2018 Latest post:
Jul 20, 2018
So for those who don't know me but would like to know what I've been going through i've written a history of my cancer related adventure. Also I have always been the type of person to try and never show pain, so even if you do know me you probably don't know most of this story.
I have been battling Ulcerative Colitis "U.C." for as long as I can remember. I was Officially diagnosed in 2008 and started taking medication for it daily. Over the years it has slowly, but steadily, got worse. After about 7 years it progressed to where I had to get monthly infusions of an Immunosuppressant. Because Pills where no longer cutting it and we needed something stronger. While the Immunosuppressant helped my U.C. it also weakened my immune system and left me feeling sick most of the time. At the time my insurance was paying for the treatments. Which was great because I looked into it and the infusions are around $30,000 for each round, OUCH! While taking thies treatments I started to feel good enough to finally get a job.
The Perfect Storm:
It didn't take long for me to find a job that was easy and paid well. When I started working for this company, I made sure they had a good health insurance plan, because insurance I was on ( Oregon Health Plan "O.H.P" ) would have to be dropped once I got the job. So knowing that I Need health insurance to be able to get my treatment, I made sure to submit everything I needed to get on their health insurance plan. Somehow, and to this day I don't know why, I was not put onto their insurance plan. Because I was employed now the O.H.P. that I was on could not be renewed. With the perfect storm of bad timing had to move my appointment out a day because of my work schedule, Which pushed the appointment one day past my O.H.P. coverage, and when I went to check to see if my insurance with the company had started they told me I had missed the window to join on their plan by 5 days. Even though I was told I had all the paperwork filled properly by my manager.
I then applied for an emergency exception with HR to be able to get on their insurance. After a week of no response from anyone I told my manager and they sent me to HR to get it straightened out, but because the company was so big the local HR people had no power to do anything other then see statuses and give Me phone numbers to call ( They couldn't even make the call or push anything through for me ). In the time it took to get through the red tape my condition degraded so far that I was having trouble even making it into work most days. Much less fight a giant corporation to get health insurance.
The Sharp Decline:
Soon it became a true struggle just to make it to work most days. I even went as far as talking with the branch manager and anyone who I thought could help. All to no avail. All the while my condition kept degrading to the point where even walking from my car to the elevator would leave me winded and lightheaded. That's when they decided to fire me.
The Rock Bottom:
Without being able to afford my treatments, and with all the time that passed as I was trying to get on insurance, my symptoms got so bad I couldn't even stand upright without being in so much pain I would almost pass out. Which landed me in the Emergency Room, then the ICU for 3 days, followed by being in general long term stay for another 8 days. Fortunately by being fired I was able to get back on OHP who paid for the life saving visit. That's when they started me back up on the infusions. Sadly, and painfully, with the gap in treatments I became allergic to the medicine they were giving me before.
That's when my gastroenterologist switched me to the Humira Pen Self injections. Once those started to work, I was back on the Job Market. That's when I started working marketing for Direct TV. at this point is when I finally had the energy to catch up with my closest and oldest friend (really more like a brother) Bob. I'm so glad that I did because life was so much more dull without him in it. Also I'm glad that I did catch up with Bob when I did because it wasn't long before my system to crash and land me in the Hospital again. This time it was only for 5 days. When I was able to get back to work with the marketing company, they decided to switch me the Home Depot contract. That is when I met one of my best friends for the first time Taylor.
The Calm Before The Storm:
There were several more small visits to the hospital, but none lasted more than a few days. Between the stress from that job and my poor health I had to quit that job. Which was, in retrospect, one of the best choices for my health I've made. Shortly after that I started Working for a company called UBreakIFix ( I am currently still working here and this has been The Single Best Employer I have ever had ). It wasn't long after starting working here that my gastroenterologist Strongly recommended that I get my Colon removed because the symptoms where no longer being controlled by even the strongest medicine. Reluctantly I agreed, terrified about the surgery.
The Unluckily Lucky:
It was the Right call. Because during the surgery they found a cancerous tumor about the size of an apple on my colon. The surgent expertly removed the tumor and finished the ileostomy. They also tested hundreds of lymph nodes to see if it had spread, and it had. 6 nodes came back positive, and that's when we started Chemo. It wasn't long after that that I ended up in the hospital with EXTREME bowel pain, and a 6 day stay in the hospital. Getting to go home on Christmas Eve!
The Chemo Is Not That Bad:
After that we got into a grove of chemo every other week, and working in between treatments. I had almost no issues until 14 days after round 9 ( literally the day I was supposed to start round 10 ) that all of a sudden overnight my intestine where in so much pain that no food or water would go down. I couldn't sleep or even stand up straight. It got so bad that before the sun came up that morning I was violently vomiting and dry heaving. Unable to keep a sip of water down and in so much pain that I was having a hard time thinking clear enough to form full sentences. I was able to wake my Dad up and communicate that we need to go to the ER. After a few blood tests, one CT scan, a LOT of pain meds, and 5 days we came to the conclusion that it was partial blockage that cause inflammation, which caused more blockage. The solution was to put a special catheter into the ostomy to bypass the inflammation and relieve the pressure.
The False Positive:
This solution did work and it was only 2 days later that I felt good enough to go home and they discharged me. Giving me several of the catheters to take home incase this happened again. Which it did about 7 days later, but I caught the warning signs early enough and put the catheter in just in time to relieve the pain after only a few hours. So worried that my diet may be causing it I started eating only soft food. It seemed to work and for the next 3 days I was doing better.
The Sunday Morning Drive:
Then on Saturday morning (May 5th) In the span of 4 hours early in the morning I want from feeling almost normal to not being able to stand upright, projectile vomiting, flop sweating, and being super light headed. Even with all that going on I was still able to put the catheter in, pack my "Go Bag," and load myself into the car. Where my Dad drove me to the ER once more.
The Full Gambit:
This time both my oncologist, and my gastroenterologist surgeon were determined to find an answer. The CT scan came back clean again and my blood work didn't show anything too abnormal. Wanting more info we did a scope of the ileostomy. That came back showing that there was significant narrowing at the ostomy site. Armed with this information we set forth to have a revisional surgery to open the site up more to prevent this from happening in the future.
The Terrible Truth:
Just like my original surgery, there was an unexpected find. The narrowing of the ostomy site was caused by new tumors. So they removed what they could of the tumors that they could see, they removed the part of my small intestine that was touching the tumors, and they had to move the ostomy to the other side of my abdomen.
The Pain Game:
Because no one was expecting the surgery to be this intensive I was not properly prepared for the pain when they woke me up. The next 5-6 hours I was in so much pain that Every breath felt like a knife rotating in my abs. It took 20 mg of Oxycodone, 14 mg of Morphine, Fentanyl, Tramadol, and Percocet to bring my pain level down to an outstanding 6/10. The next day they were giving me 10 mg Oxycodone and 8 mg Morphine every 2 hours to maintain that level of pain control. It didn't take long before they called the anesthesiologist back to give me a one time epidural of Morphine directly into my spine, as well as putting me on a Morphine pump. It took almost a week to get my pain under control to the point of no IV pain meds.
If you read all of this thank you for listening to my story, and you should know that:
I Am A Fighter
I Will Beat This
This Is Not The End Of My Story!