Many of you have wondered why now. It just clicked and that evening Monday it clicked, timing was right.
I saw my GP this weekend we have a lot of questions of how this looks like. . I am told it will be calm and peaceful. No pain and floating feeling.
I am still concious, comfortable.
1 week to 5 weeks is life expectancy.
For now I take in nature and as family visitors as I can handle this weekend.
Naarah
I've made the decision to medically remove my bionic women artificial care of TPN.
It's been a hard decision but eveyone has told me I would know when it's time and it's time.
I will get weaker and will die over who knows how much time. Terrifying, exciting, calm, confusing, and everywhere inbetween.
Lots of love out to you now. Know my family need time and space right now. We appreciate you thoughts and prayers!
Love, love love love, all we need is 💞
What do you do when you can't sleep at 6 am and the whole house is sleeping?! You blog.
It's amazing when you become "stuck" close to home. You find things to do. My garden has never been healthier, daily trending & watering, a new found obsession which beautifies and brings joy to my life in a whole different way.
I've had amazing people come to me for visits while I lounge in the sunshine. Friends for stop in's, playdates, chair yoga with older neighbor (good for both of us) and just getting to know neighbors that unfortunately in the past I have not slowed down enough to get to know. There is an amazing gift in strengthening a local bond that wasn't there before. Favours offered and recieved as well as amazing things you learn and are inspired by that are right under your nose!
People are amazing. Slow your life down and get to know those around you, it's pretty eye opening and amazing!
It was a special blessed Mother's day.
I was treated to an amazing kiddo making me breakfast to taste (not really eat because I chew and use what we call my spitoon) of a hashbrown and watermelon outside in the garden, followed by getting out to church then a adventure to some trails in the delicious smelling cedar trees woods. My amazing hubby showed his love by pushing a regular wheelchair on very rugged terrain up and down hill. He sure had his workout today! Spent time with my mom on that walk too.
I also got to call my beautiful mother-in-law and had a nice visit with her over Skype.
Not to forget to mention the special Mother's Day greetings I recieved from so many special thoughtful people in my life.
I thank God for such a beautiful day of feeling fairly normal.
Lots of love to you momma's and female role models out there. Lots of love!
Just being is how I have survived theses days. Mostly watch the world go by. It's harder to just be, I'm naturally a doer. I find joy in doing for others and now it is a real challenge and drain just doing for myself. I can get comfy settled on my couch and become afraid to to things because I will use up too much energy and not have any left for the rest of the day. I've played around with activity levels and if I play hard I fall into a deep sleep for like 3 hours afterwards. Most days I'm able to play to some degree of rest and activity balance that works really well. The other day was more of a struggle than most days. Most days I'm able to use the joy and happiness life has to offer. Managing to get outside and enjoy seeing plants grow and watch the world go by and interact with friends or family are all still very present in my life.
The other day my daughter, parents and I managed to get to the library followed by a stop at the park, reading lying in the grass and making Daisie chains. A glorious afternoon! The following day I woke up feeling lost and unsure of what I'm able to do. But by the end of the afternoon my daughter and I were creating a fancy fairy garden and having a blast doing it!
With medication changes, loving support of family and friends & prayer I am slowly finding my way back to being functional again. I have been able to see God at work in my life and been able to lean on him, trust him and realize my purpose is to praise him, trust him and pray and think of those around me. That my energy can do!
This weekend has been a very special weekend. My daughter turned 7 years old.
I've been working slowly over the last number of months prepping cake decor, decorations, crafts and activities for her party. I love doing these sorts of projects and for me to participate with it I had to slowly working away at different parts needing to be done.
Archeology sand blocks were made before Christmas. Decorations printed and created early in January. The cake was made a few weeks ago and frozen just needing to add the last minute details the night before.
I also had amazing helpers with prepping many things. This week an amazing friend has been in town and I've put her to work with last minute pick ups and set up and clean up. My sister-in-law also picked up party food and led crafts and activities with the kiddos and clean up. My hubby helped with my medical things as well as entertaining the kids and playing with them in the snow.
The party was a success and it meant so much more than just a regular party. You see it's hard to shake the thought of lasts.
That quite possibly was the last birthday party I'll throw for my daughter and that made it extra special. My life expectancy is very uncertain because we have no clue how quickly the cancer is growing and that is quite the challenge. But, I will continue living life one day at a time and attempting to get every moments of joy out of them!
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!
