Celebrations | Ostomy
I am a child. Just ask my kids. If there is something shiny or a button to push, I can’t resist. When the holidays roll around, I can barely contain my excitement. Christmas shows are must-watch television. Decorations go up Thanksgiving weekend. I have a beautiful Christmas sweater for almost each day of the week. (Notice I did not say ugly sweater…there’s no such thing.) I buy too many presents for my friends and family and spend way too much. I still get excited for Santa. I think you get the idea. I LOVE Christmas.
My life changed in July of 2018 when I was diagnosed with bladder cancer. The treatment prescribed was immunotherapy, Bacillus Calmette-Guerin (BCG). Beginning in October, once a week, for six weeks, this vaccine was put into my bladder via catheter. I then held it for 2 hours then urinated.
BCG is actually the vaccine used for tuberculosis. As a result, I had to be careful when I went to the bathroom. I had to be the only one who used that particular toilet. I was required to wash the toilet out with bleach each time I urinated. I was not allowed to have sexual intercourse in order to protect my husband.
It did not make me sick but, with each subsequent dose, it became more uncomfortable, with bladder cramping and burning. I would take off work the day of my treatment but was able to continue working otherwise. The goal was to alert my body to attack the tuberculosis and the cancer cells. December 21, 2018, a cystoscopy and, if necessary, a trans urethral resection of bladder tumor, or TURBT, was scheduled. They would look into the bladder to see if the BCG worked or not. If necessary, cancer cells would be removed. The hope was the bladder would be clear and a TURBT would not be necessary.
Unfortunately, this was not the case. I will never forget coming out of anesthesia and seeing the look on my surgeon’s face. The cancer had come back with a vengeance. There were multiple tumors throughout the bladder and we would have to treat it aggressively. I would have to have my bladder removed.
Having cancer really affected my holiday spirit. It took me forever to want to put up a tree and decorate. I did it because of my family but my heart wasn’t in it. A TURBT is surgery so I was not going to be able to do Christmas myself. To be honest, my shopping and wrapping (yay gift bags!) were done, but I knew Christmas Day would be hard.
My family was amazing. They were happy to take over. I think many women can relate to my feelings about losing control. I had to sit back and let them execute their plan. It was wonderful. The food was delicious and it felt like Christmas. There was a pall over the day as I was still dealing with a serious disease, but having my family around helped. Three Christmases have now passed and things are back to normal. I have taken Christmas back. Because I have never let cancer or having a urostomy define me, I have my life back. We now have a grandson. It is wonderful celebrating Christmas through a child’s eyes again.
I cannot let a story about Christmas go without talking about my stoma. Many people name them. I hemmed and hawed. I had no idea what, or even if, I wanted to name him. Yes, him. My ostomy nurse suggested Squirt. While it is appropriate it, and I must admit I have used the nickname, we ultimately decided on a different name. Meet Rudolph my Red Round Stoma. I told you I like Christmas. I even wrote a song about him. It goes as follows: (Sing to the tune of Rudolph the Red-Nosed Reindeer.) Enjoy! Merry Christmas and Happy Holidays!
Rudolph, my red round stoma
Was put there to help me pee.
And if you ever saw him
You would say he was ugly.
All of the other people
Had bladders where they should be.
Because of bladder cancer
The same can’t be said for me.
Then one chilly winter day,
Preston came to say,
“Bladder’s gone and cancer too
You don’t have to use the loo.”
And now we all love him
And we shouted out with glee
Rudolph the red round stoma
Because of you I’m cancer free!!!