Three our four weeks ago I (supported by my family and loved ones) decided it was time to end treatments.
Each round of chemo tried to kill me in a different way and left me needing to isolate myself in my room most of the time due to extreme cold sensitivity when breathing air less than 24 degrees. Energy levels were so low that I didn't even care I was so isolated and couldn't get outside. I wasn't able to see friends and many a times not even able to read a book to my daughter. I've had to have her hold the book while I struggled to read to her because it was just that hard to do. I was getting confused and delirious and also going into increased liver failure. CT scans and other tests are inconclusive about the success of the chemo but the fact that I am still struggling with increased bowel obstruction issues it seems fairly clear that it's not doing what it should or not doing enough. The reward is less than the torture of treatment that only has an end when I say it ends.
Since my diagnosis I have always known and told myself that there will come a point where quality of life is far more important than quantity of life. For this very reason I have made this decision to stop treatment and I feel so good about it.
I am living with much better quality now. I have craft projects on the go, I get out for social walks at least once if not twice a day, I can handle calm social visits with important friends and family, I have more energy to laugh and smile and play board games, read to my daughter, get out to church and my daughter's hockey games when energy levels allow it and I pace myself to the extreme.
Bowel obstructions don't allow me to eat but I already am recieving most of my nutrition through special IV fluids (TPN) every night due to what was an ileostomy that moved way too fast, not allowing me to absorb much nutrition. I sit down to dinner with my family, chew the food then simply have a spitoon and don't swallow the food, gross but this allows me the joy of taste!
I am functional enough to occasionally socialize with other cancer survivors through art therapy class, restorative yoga and a family group that meets once a month that we will start attending next week. This is something that I'm hoping will be helpful to our whole family and give us some positive time together and support to Erik and Layna once I'm gone.
Because of the amazing support I get through my faith and many beautiful paper cranes being sent to my home by so many people as a sign of prayers and support as well as the physical and emotional support from my husband, my daughter, in-laws, my parents, sister-in-law, super awesome loving friends and almost daily visits from homecare nurses, I have an amazing quality of life! Especially considering how unwell I am. Everyday is a struggle and my energy and activity ability can fluctuate widely from moment to moment but I'm taking each minute one step at a time.
In my situation ending treatments has allowed me quality of life and I'll take every moment of joy I can get!
