Sunday, 25 February 2018

7th Birthday

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!

Living Life

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!

Monday, 4 December 2017

Repeat patient

I have become that repeat patient.   They know me all too well on the general surgery unit.   I always felt that once patients start coming in more frequently that was the beginning of the end.  Which could be true but we just don't know, I could have a month or I could have significantly longer. 
I've discussed with my family and realistically when it comes time I will go quickly.  Because of an iliostomy that is high output (empties about 4 litres a day) I'm kept alive on a daily basis because of 3 litres of IV food (TPN)  and about 1-2 litres of other IV fluids.  When I become too weak to maintain these consistently by myself I have decided  that it will be time to stop these infusions.  That means very quick dehydration when you consider how many IV fluids I get in a day.   This may sound like a terrible end to many of you but if you have seen the long drawn out tortured (for patient and family) end for many cancer patients fairly quick decompesating may be a blessing.   I have always been of the opinion that quality of life should definitely outway quantity.   The hard part is as you go along day by day in life and become more into survival mode you can only see the step or two in front of you and occasionally loose focus on the bigger picture.  I need to be sure to keep that picture for myself and my family clear.
As far as quality of life goes I actually feel quite good right right.  And that has everything to do with my family and friends helping me on a daily basis make my projects and dreams for the day become a reality.  They do the tedious, tiring parts of projects and I step in for the fun parts.   If I had to look after the tedious parts there is no way I would have energy for the fun parts and in turn no energy for fun and joys and in turn a poor quality of life. 
Palliative cares involvement in my case has being amazing.   Some people are scared off by even just talking about palliative care.   My case their involvement has drastically altered my quality of life.  I am on a continuous pain medication patch and 4 different medication injections multiple times throughout a day.   They control abdominal cramping and pain quite well.  I didn't realize how much pain I was in until after I started on these medications. Chronic pain fogs the mind and you can't think, problem solve and look into the future because you mind is so focused of survival of making it through that moment.  Palliative care has given me the gift of pain management and this has released my brain to be able to think about other things and other people a little bit more as well.  Knitting,  handling occasional listening to music,  handling having a small crowd of people around or doibg light easy yoga are all things that a couple of months ago were draining to the extreme.  They are still draining but at least I can process in my mind that they are and I can pace out my day to be able to do some of these joys in life again.

I'm living a higher quality of life solely because of the willingness, helpfulness and understanding of those around me. For this they will never truly know and understand the gift they have given me.  Thank you is not a strong enough word,  but THANK YOU!!!

Tuesday, 13 June 2017

Feeling Loved

It's been a rough couple of weeks and there will be a lot of challenge, exhaustion and pain in my future.  But do you know what there is even more of?   LOVE! There is love in every hand squeeze,  every smile,  every little text message,  every visit, every drawing, all the bright flowers, every meal delivered to my family, all the emails, every playdate for my daughter,  every mundane task I'm helped with,  every Skype visit from those far away, every medication given and in all information, teaching and experience shared.  Love is all around! 

The cancer through out my entire abdomen is back.  So much so that the surgeon couldn't determine between bowel,  pelvic wall and tumour in my lower abdomen.   If and how far it spreads through the rest of my body is not known yet.   I am currently recovering from 9 days with no nutrition followed by surgery which has left me with in incision from lower sternum all the way down to lower abdomen,  a g-tube and an iliostomy (or poop-bag, as my daughter calls it). 

Every act of love adds a little bubblewrap bubble of love surrounding me.  I am in a love bubble and it is helping cushion me from the hard blows that life is throwing at me.

Monday, 5 June 2017

Pray even if you don't usually pray!

I'm the only case on the surgery slate for tomorrow.   The surgeon is very suspicious that this is cancer regrowth.  We are preparing for the worst and hoping and praying for the best.
Today I am surrounding myself with love,  hugs, family, friends, fresh air and sunshine!

Sunday, 4 June 2017

Practicing Patience

I'm being patient.   8 days with no food,  nasogastric tube suctioning and PICC insertion with TPN infusion(food through IV)  to start tomorrow.

Over the past number of months adhesions from previous surgery have  slowly  being tightening around my small bowel.  Now there is a partial blockage.  

You would think I would be more frustrated and annoyed.   Truthfully,  I'm relieved.  
I am relieved that they have finally figured out why I've been having slowly increasing pain since last fall. 
I'm relieved they've figured out why I've lost 30lbs over the past 4 months despite very hard work  to consume enough concentrated calories.  
I'm relieved something can be done to improve my quality of life.
Most of all, I'm relieved that they believe this is an adhesion problem not a cancer regrowth (of course they don't know for sure until surgery).

The potential plan is for a bowel resection this coming week.   Monday will be the turn around for a new attending doctor to take over.   Discussions will hopefully happen tomorrow and from that more of a plan for moving forward!

Tuesday, 30 May 2017

Side Step

I won't call it a step back,  I'll call it a side step.   I have ended up admitted in the hospital this week.   My digestion is so sensitive that I'm pretty sure it was a eating a peeled,  seedless cucumber did this to me.   Note taken - puree,  puree,  puree!

This weekend I was at girl guide camp with my 6 year old daughter. Saturday afternoon I suddenly became quite ill.   Abdominal pain,  nausea,  vomiting,  the works!  I spent the night in Sechelt hospital where I was pumped full of antinausea and pain meds discharged the next day with the understanding that I would go into the Vancouver hospital if things got worse again.   I managed to get across the ferry and then everything went awry again,  so here I am waiting for my intestines to work again and going on day 4 nothing by mouth and only IV fluids.
As much as this sucks I am waiting patiently and enjoying being forced to get some knitting done, many walks around the hospital and visits from the awesome people in my life.   I do however need a better texting plan!
My daughter was excited to go have dinner at the hospital cafeteria,  her fondest memory of my prolonged hospital stay a couple of years ago.
I've taken a step off my track of improvement but hopefully I'll get to step back on it before too long!
Thank you your love and support 😀