There was a spot “glowing” on my spleen that we watched for over a year. It wasn’t getting bigger, but it wasn’t going away. Near the end of 2007 my doctors ordered a biopsy. After the procedure the doctor informed me the mass was fluid filled and most likely not cancer. He was wrong.
Cancer again, surgery #5.
A splenectomy was performed on December 12, 2007, just one day after my 34th birthday. The surgery went well. The tumor removed was used in my immunotherapy trial. Unfortunately, a month or so after the surgery, I developed an adhesion that created a 350-degree kink in my small intestines. I needed surgery to fix it. I already had Short Bowel Syndrome and was on TPN seven nights a week. Cancer had reoccurred four times in three years after my original diagnosis. I refused surgery until April 2009, so for about 15 months I didn’t eat solid foods. A couple of times I tried, I either ended up in horrible pain for days or in the hospital. Sometimes I would chew food then spit it out, which is surprisingly hard to do since swallowing is a reflex.
In 2008, I was in the hospital 28 times. I still cooked dinner every night for my husband and two sons during that time. One night while cooking stir fry I decided to make only half the rice the recipe called for since my sons weren’t big rice fans. However, I forgot to half the soy sauce and didn’t realize until Kyle, (age 7 at the time) who would eat anything I put in front of him, said “Mom, this isn’t good.” I asked my husband, “Is it bad?” He said, “We’ll talk later.”
My poor, sweet husband, Todd, didn’t want to complain or say anything bad about me or my cooking in front of our boys. He was eating it anyway! I didn’t make the boys eat it. I ordered a pizza. I finally figured out what I did wrong after rechecking the recipe. We all had a good laugh that night.
Life goes on...
Todd loves to hunt. I should say he lives to hunt. If he could hunt all day, every day, he would. Working gets in the way a little bit but every year he goes hunting for 2-3 weeks. In 2008, he was going for 17 days. I decided I wasn’t physically able to take care of our boys by myself while Todd was hunting so I asked my parents to come to Ohio (they live in Pennsylvania). My parents said they couldn’t because they were going to Orlando. My genius solution to that was, “we’ll go to Orlando with you.” Because, of course, when you can’t even take care of your kids by yourself at home, it's the perfect time to go on a trip to Disney, right?!
Such a colossally bad idea that was. On our first day we went to the Magic Kingdom. Since I couldn’t eat any solids, I used the money I saved on food to rent an electric scooter because I knew I couldn’t do all the walking. My mom followed me around all day – even into the bathroom. I repeatedly asked her to stop, but she wouldn’t listen. She followed me once again into the bathroom in Tomorrowland near Stitches Great Escape.
Remember, I’m only drinking clear liquids and I have a G-tube to let out fluids and bile from my stomach. Not a whole lot was making it through to my ileostomy bag, but I still had to empty it and/or my stomach several times a day, and I still had to pee (my kidneys were still working back then). I wear a 2-piece ostomy appliance. For those of you who don’t understand what that means; a wafer or flange sticks to my belly where my stoma comes out of my abdomen and a bag or pouch (I fondly refer to as my crapsack) snaps to the wafer.
In the bathroom stall at Disney World my crapsack unsnapped. All of its contents poured into my pants and shoes. The bag itself landed in the toilet... the auto-flush toilet! The toilet began to flush. And flush. But the bag was in the toilet blocking the water from draining. The water poured out onto the floor. I looked at the feet of the lady in the next stall as water poured all over her feet too. I said, “OH SHIT, literally.” I was laughing out loud. What a disaster. I had to reach my hand into the toilet and pull the bag out. My mom is standing on the other side of the door saying/yelling “What? What’s happening?” I handed her my shorts over the stall door. She said, “What am I supposed to do with these?” She rinsed them out in the sink. I remember being so glad I wasn’t eating solid foods. THAT would’ve been a mess.
Mom asked me why I was laughing; I told her I had two choices, laugh or cry. I chose to laugh. Sometimes my life feels like an episode of I Love Lucy. The only thing making its way through was a small amount of Gatorade and a little bile. I did feel really bad for the lady in the next stall. The shorts were the quick drying material too, so that was a plus. We ended up being in the bathroom for close to a half hour and for once I was glad my mom followed me into the bathroom ALL DAY, even though I told her to stop.
My dad was with my boys. They rode Space Mountain again and got a picture with Stitch. They hated the characters. They were scared of them but Dad convinced them it would make me happy so they did. I think it helped that Stitch is relatively small so he didn’t tower over them. When we finally came out Dad said he thought I fell in or something. Yep, something like that.
I love this picture of my boys and Stitch, it brings back so many memories. They’re nearly all grown-up now. It’s been such a privilege watching them grow into the young adults they are today. I’m so grateful to be alive, visiting colleges with my son, because I used to pray that I’d live long enough to see him start kindergarten.