Thursday, 25 October 2012

Good Days!

Today is a good day.

I had a lot of mixed feelings when we stopped chemotherapy. It wasn't a light decision at all; Chris and I agonized over it for a while, but finally decided the cons outweighed the pros for me.  The main part of that statement? FOR ME.  Every cancer case is different; from the prognosis, to the surgery outcome, to the type of tumor, to the side effects of chemo.

 I have been very lucky in that I belong to an online support group ( Appendix Cancer Support Group) on facebook that has really helped me in this journey. Its a closed group so people are honest and discuss/ ask things that normally we might shy away from talking about.  I have never been someone content to hide my head in the sand and go forward blindly, so the information and support have been invaluable. From the people there I have learned that some of the issues I was dealing with weren't that odd; I got suggestions, recommendations, understanding. Belonging to some sort of support group has been crucial in helping us cope.

This weekend we are taking Aiden with us to a 'Children's Group' at the Cancer Centre.  He has a wonderful counselor at his elementary school that he gets to see once a week, but this is sort of a family counseling that takes place every 2-3 months through the center. He is very eager to go and find kids going through a similar experience, and we are also donating some cancer kids books to his school for his birthday.
We have always had great communication with him and he's a wonderful little guy, but lately I've been noticing more and more he's reluctant to discuss his worries and fears - he doesn't want to stress US further!

Chemo was hard on me, physically and emotionally. It was really hard on Aiden and Chris too.  Aiden in particular was a lot more nervous - he started sleeping with a nightlight again, and needing a lot more cuddles and reassurances. When there were fire, earthquake and 'burglar' drills at his school he was terrified.  My impression was that chemo showed him how weak and vulnerable I can really be, and he wasn't expecting that. People always talk about the toll  that cancer takes on the body, but fewer discuss the toll it takes on the spirit, on the heart.

This week  Aiden had a cough and a bit of a fever; as I'm being careful not to catch anything bad before we have the chance to get our flu shots next week we kept him home to nip it in the bud. We cuddled ( carefully) cooked, drew, played... it was wonderful. Today when he went off to school he was a much, much happier little boy. I think now he feels that I'm back. We've always been peas in a pod, doing everything together.  The last few months I couldn't even really take him to school and pick him up, never mind really do anything fun together. Now that the chemo is finally leaving my body I'm starting to have more energy and we're returning to our routines; he was so happy that I took him to school today.  Bit by bit, and day by day we're getting back a little of the peace of mind we'd lost.

Our world, however, has forever changed.

Still, today is a good day! For the first time in several months I feel like -me-;  I look at  the mess in my house and want to dig into it and clean it. I brought out my fabrics and have been making tiny doll clothes.  I have the writing done for a children's book I'm planning to make with Aiden about our on-going journey.

Autumn is here and it feels like I have missed out on just about every season this year; that's okay... I look forward to enjoying them all next year, G-d willing!

Tuesday, 16 October 2012

No more chemo for me!

Today I'm done with chemotherapy, its official! :)

I only managed 4 out of the 12 cycles - I had so many side effects and it hit my body so hard that it was decided it was best to stop it. Last week my cycle #5 was cancelled, as my white blood cell count was too low, so today we made the choice with the oncologist to officially end any more chemo. Happily from the blood tests today my white blood cells are back to normal levels now.

So... DONE !   I am happy that I had some, which has hopefully helped get rid of any cancer cells left, but even happier that my body now gets the chance to heal. Its finally a chance to put this year's craziness in the background and be able to concentrate on family and other things.

What comes next is waiting for my MRI scan, which won't happen until some time in December. Between now and then I will also have to have the port-a-cath removed ( ow), and it'll have to be flushed every few weeks until it CAN be removed.

After the scan in early December we'll be able to see how everything went. I am REALLY hoping after everything we've done it'll be clear, so prayers and positive energy much appreciated in that regard.
We have a meeting with Dr. J on December 19th, which is when hopefully we'll discuss the scan results.

So for now... cancer treatment is done. For the next couple of months we get to focus on healing, building up my immune system some and enjoying end of year activities with Aiden and Chris - and all our friends!

Wednesday, 10 October 2012

The Best Laid Plans

Dr. J's office called me yesterday to let me know there were some red flags with my bloodwork, so to go in today before my chemo and have some more bloodwork done.
So I did.
Aaaaand then they cancelled today's chemo. Apparently my neutrophils levels are 0.3, where normally they should be at around 1.2.
Chemo has been postponed for a week, and I'm debating whether to just see if I can get in to see Dr. J and call it quits altogether. In the meantime I have to be really careful about not being around anyone sick and if I spike a fever off to the ER.

Sunday, 7 October 2012


Today is Thanksgiving here in Canada.
While in my house it will be perforce a low-key affair, I'd be remiss not to at least mention it.
I have been blessed  with many, many things to give thanks to, and not just this year.

There have been so many challenges, so many insurmountable mountains that prop up... but ALWAYS there has been a helping hand, a ray of hope.
I'm blessed to live in Canada. My operation, my chemo -- everything was dealt with without bankrupting our family, as is the case in many other countries.
I had access to one of the top experts in the field, even if that meant I had to leave my province to get it.
I had just about the best outcome from one of these surgeries. I had little complications after, all things considered.
I was offered chemo. For all that I complain about it, and how hard it HAS been because my cancer is so rare and not blood-based, there's very little research that chemo does anything for it.  BUT I was offered it and given it just the same, so give me the best fighting chances.
I have an amazing GP and oncologist, both of whom go above and beyond to help me beat this thing.
I have an amazing family, who took turns keeping me company at the hospital, who moved cities to be closer to Foothills and be able to help us manage MOAS and the aftermath. 
I have an amazing husband, who truly is my best friend and soulmate, an amazing son that kept me going through EVERYTHING, amazing twin niece and nephew who brought smiles to my face no matter what.
I have amazing friends, who dropped food off when I was too sick too cook, who took Aiden for playdates to take the stress out of him and give him moments of joy , or looked after him during ER trips, who kept Chris sane and helped fundraise for research.

I have friends and family around the world, of every faith and belief, praying on my behalf and sending me good energy.

I have a stubborn, stubborn nature, and a fair amount of excess weight which served me well over the past crazy years.

I am thankful for family, friends, life and chances.  I am thankful for all of the above and whatever else may come at us in the future? I am thankful for today. :)

Happy thanksgiving, dear friends.

Wednesday, 3 October 2012

And Then There Was One?

Thank you so much for the suggestions and encouragement. Will be exploring a few - thankfully the cancer center here seems fairly openminded.  Can't take any supplements or such while on chemo, but that might soon chance.

After examining the side effects and issues ( like the blood pressure drops and passing out)  in balance with the chemo benefits with my specific type of cancer, we've decided in conjunction with our oncologist to only do 6 instead of 12.  More likely 5, even, which means that after the one next week I would be done ... at least for a while!  My MRI won't be until December, which means until then we won't really know how effective  the MOAS and chemo were, but we can certainly be hopeful!

At this point my body is still too battered from the major surgery and the chemo to take more; its a matter of making sure I can actually HEAL, and regain some of my quality of life in the process. After December's scan -- well, we'll see. We have to take our chances and navigate the options as best we can.  I am hopeful that the December scan will be clear, and finally let me take a breath of relief, at least from now.

So one more, maybe 2. I can do this! I can push through the last little stretch, and then concentrate on healing my body and soul. I've gotten a Cooking for Cancer cookbook, to assist with nutrition, and I look forward to getting back to some level of activity. I have projects, and hopes, and need to get my body in shape to take them on. 

This year was hell but it also showed me what my family and friends are made of, what my body can take and overcome. What my spirit can rise above. Bless you ALL for the comments, suggestion and support. Many of you that I don't know as well amaze me too. Your kindness and generosity of spirit in leaving a word or a thought, mean the world. That is the energy I draw from to get up and go, to face each day determined to beat this thing.

Here's to kicking the jelly to the curb!! <3