Catching up - other stuff

So with all that health stuff going on my world still turned - some good, some bad as life seems to hand us all.

Starting with the good - I have a new roommie! Let me introduce you to Lulu - my beautiful Seal Point Himalayan cat!

She seems to have a bit of a princess look in this pic... which is not surprising.. it's so wonderful to have a new buddy to hang out with & talk to & I just love her!

A lot of Callanish Writing has happened since my May posting. We finished up our 6th series and a new book is on the way. It was tough to write this last series without the inspiration and guidance of Kirsten but she has left us an amazing legacy and I honour her with every word I write because I know that without Kirsten's vision of Callanish Writes I would have never put pen to paper. How I wish Kirsten could have been at our summer sessions too - she would have loved it! Right here at my home - on my deck - once in July and once in August - we love our decks!! Thanks to all who made the unpredictable trip both ways thru the tunnel and left such positive energy behind for me to wallow in.

We have new baby in the family - beautiful London Brielle (Mills) MacLellan arrived July 17th - London's mama's 3rd child and only girl, Big Bro's 8th grandchild (and him barely an adult himself!) and my 11th great-niece/nephew! Sadly London was born with a severe heart defect called Ebstein's Anomoly and although the first week of her little life was very precarious, she is doing remarkably well now at just over 6 weeks old. London's cardiologist says 'she keeps proving me wrong', uses terms like 'amazing' and she is the rock-star of Children's Hospital cardio unit! She will have to have a heart transplant but for now she is home, gaining weight, smiling, laughing and doing all the things a normal baby would do including be loved and catered to by her parents & very proud big brothers.

Such a cutie-pie!

There's been dinners and lunches, manicure and pedicures, shopping and spending, visits and quiet time, phone calls and emails, books read and movies watched, tears shed and laughter laughed - your general garden variety life! Nothing earth-shattering or devastating with the exception of London's diagnosis - but we will stay in the here and now and enjoy every day with her.

Other good news is that the police arrested and charged the 19-year old who killed Marilyn. Ten counts altogether. While I'm glad to know he will be held responsible and accountable, I can't help but feel some compassion for such a young man who will never have the life he could have had or would have had. Such a waste - on both sides. Lives changed forever for what...

Other good news - my darling Danielle is engaged - congratulations to you & Geoff my sweet!

And as always within my communities there have been losses these last few months. My friends, my supporters, my buddies , my heros.

Rest easy Judith
Rest easy Yan
Rest easy Wayne
Rest easy Caio

And a candle for Mona..



Stay well my friends.

Catching Up - the health stuff

Bad blogger - that's what I am! I was determined to post at least once before the end of the summer - can't get much closer than August 31st...

Hard to believe 3 months have passed since I last wrote. It's been a rough few months healthwise but am definitely feeling better the last 2-3 weeks. Without going into a lot of detail I had the nephrostomy tube removed - the pain wasn't worth the gain. Too many procedures, too many trips to the health unit, too many bladder infections, too many yeast infections, too many weeks on antibiotics and one great big old skin infection from too many bandages which I'm still trying to get rid of. At the end of the day, the diagnosis is still the same - unable to determine wether or not there is cancer in the ureter as it is so compressed they are unable to pass anything thru it, which also means that a stent can't be inserted to alleviate the kidney condition. My right kidney is likely not functioning well regardless and so will eventually atrophy and do nothing... my left kidney is just fine so that's not a huge worry and my oncologist will keep an eye on the kidney condition. Other assorted and miscellaneous conditions and symptons related to the above have come and mostly gone so I don't see any need to bore you with those details.

So now September approaches.. which is gearing up to be a pretty busy medical month - seems all my new best friends have an MD of some sort after their name. I have another bone scan coming up - I've been having some light pain in my lower back and left flank - close enough to the tumours on my 'iliac' to warrant another test. 1/4'ly CT scan also coming up in a couple of weeks. Then my monthly treatment and my monthly visit with my oncologist to see if I get to stay on this 'chemo light' or move on to something more effective. Tumour markers have been slowly rising the last couple of months and while not sky-rocketing, still a source of concern. After much thought and trepidation I've made the decision to have a port-a-cath (port) inserted. I simply have very few cooperative veins left and given that I get way too many needles between blood work, procedures and IV's and the nurses run the other way when they see me coming it seems a logical step to take. The procedure involves day surgury so I'm waiting to hear on that - would be nice to have that done before I have to have the bone scan, CT scan and my Sept treatment - no bruising, no anxiety - that would be a nice change! As always my major and ongoing grievance is fatigue - worn out, worn down and depleted!

It's a full time job this cancer thing - but I'm still in pretty good shape for the shape I'm in!!

Stay well my friends.

An Open Letter

This is an open letter to everyone I know and don't know .... my sister, my brothers, my 'kids', my kids kids, my friends, my acquaintances, and to those I don't know but who randomly read my blog ... and to myself.

My friend Marilyn was killed last week - May 18, 2011 by a hit and run driver. She went out for dog food and was two minutes from her home.

So don't wait. Don't wait on the world. Don't wait for life to come to you - it won't - you have to find your life. Be brave, find someone to love, someone who will love you back as completely as you love them. Be a team.

Live out loud - now. Find your passion and live it or learn it or be in it and then wallow in it.

Enjoy a lazy day but don't live a lazy life. Be connected to all that makes you feel right and good - not just okay.

Don't settle for okay - don't settle for 'just okay', don't settle for 'okay for now' - not even for the short term. Don't settle for a job that doesn't fulfill you but pays the bills, don't settle for a relationship that doesn't fill your needs, don't settle for people who want more from you than you have to give.

Settle for great - settle for great love, great friends, great family, great community, great contentment, great career, great joy and great laughter. Live a life of abundance.

Keep moving forward - don't wait for the heavens to open and life to explain itself - it won't. Life is what we have today... along with our yesterdays - our memories are our life. Figure it out as you go along - don't wait for the bolt of lightening.

Ask for what you need - from yourself, your friends, your family, your mentors and the universe. Figure out what completes you. You. Know that as much as you might think you are in control, it's an illusion. Be the best you can be - start now.

One small act of kindness is food for your soul - so be kind to yourself and anyone you meet on your way.

It's not life that is short - it's each day that is short. Make a plan, try your hardest, do your best - for 24 hours at a time.

I've known people who lived to 28 and some who have lived to 100 - and many many in between.

Don't race thru life trying to grab all the apples from the tree - but please don't lie sleeping under the tree until all the apples are gone either.

Don't fake it, don't ignore it, don't take it for granted, don't be scare of it.

Stand your ground, state your truth, be committed and be flexible.

Keep your friends in your pocket and pick being loved over being right.

Rest easy Marilyn.

It's ugly out there

And I don't mean just the weather... although it's realllly getting on my nerves. I have this great big beautiful deck just crying out to be set up and used but the only thing cryin' is the sky.

Chaos reigns in my house again as my new floors are being laid. This is just as bad as doing the last reno - I've got toilets in bath tubs, vanities, dishwashers & stoves in the dining room and an inch of dust from all the cutting everywhere. I've seen more men in my house this last week than I have in the last decade! Hopefully by Friday it'll all be put back together. What a disaster a bit of water can make - everybody make a 'note to self' - check water tank on a regular basis!

An unbelievable loss in my Mets Group community - 9 days after returning home from retreat my friend Cheryle passed away. Our community is well aware that things can change quickly but this has taken my breathe away. Cheryle is an art teacher and took us thru an art exercise that is now more precious than ever. She was so happy and had so much fun on retreat getting to know everyone since she hadn't been coming very long. We, and I include Cheryle here, had no idea things were so precarious. Another lesson is living in the moment.

I've been debating on how much to share about my follow-up appointment and have decided to let the truth prevail. Had a long talk with my new best friend - Chris (the urologist) about this 'n that 'n things 'n stuff. The outcome of it all is that on Friday AM I went back into VGH to have a nephrostomy tube inserted to drain my kidney. Talk about a woman with baggage now!! The hope is that they will be able to do some diagnostic testing on the specimen's that can give some indication of whether or not there is cancer in the ureter. We also discussed the option of taking the right kidney out - which in my mind is not that big a deal (since I'm not having it done right now!) - I have a perfectly good left kidney after all and amazingly you can live with 1/2 kidney - who knew?? Chris said that if I were a perfectly healthy woman that's what he would recommend however, apparently I'm not! So one foot in front of the other. Bone scan this week and next oncology appointment June 1st - I think that will be a significant appt and hoping Irene will be with me.

As always trying to stay in the present. We are looking at this procedure as a temporary measure right now but I can already tell you it's not my favorite thing.

Can't help myself - really want to sign off 'Love - Bag Lady' today!

Stay well my friends.

Rest easy Cheryle

Since the retreat...

Enough of the fun - back to reality! Panic phone calls on my cell from VGH - get in here - get pre-admission done for Wednesday day surgery! Tuesday - 7:30 AM - I'm there. And what a way to start - the gal at the desk flattered the heck out of me over my tasteful little outfit - which I consider just getting dressed in black & white cuz it always works and is really easy @ 6AM! Then the first nurse AGAIN! So I'm good with all those compliments cuz I know I won't be looking that good when I get there Wednesday and really not good when I leave!!

Now down to business - answering the same questions - over and over and over again. I get it, really I do, but jeeze louise.. that info is most definitely in my file already.. and I do know what the surgery is for. A triple-decker by the urologist - let's find out about that blockage. Time of surgery Wednesday - 3:30 PM!! Happy to talk to the anesthesiologist - they won't give the drug that made my heart stop in my last surgery - good to hear! Still a little nervous tho - but I'll get over that when I wake up.

Fast forward to Wednesday - Big Bro picks me up and away we go - more hurry up and wait. Change into my next outfit of the day - blue is so not my color and I prefer pants over dresses but what can you do.. Still not too nervous. Dr. Sam drops by - he's helping Dr. N - who drops by with a backpack on - a backpack!! Puh-leeze, I only elevated you to adult status last week - lose the backpack, get a trendy briefcase. Maybe I'll buy him one if this goes well. So I won't bore you with the details cuz I can't remember but the outcome is this - 2 out of 3 procedures went well however the main reason for this whole thing is to find out what the blockage is and do a biopsy. Well... he couldn't get the scope into the ureter cuz it's so narrow now and thus we're sorta back where we started - other than he thinks there's very little functioning of the right kidney. Which I find odd. Follow-up appointment next week to seek what the next step is. And I will not worry because I can't do anything about it. And he's not getting a new briefcase just yet.

My heart is aching for my friend Susan and her husband Dallas - Susan is really struggling thru the effects of her 2nd TheraSphere treatment - such a brutal treatment - it just has to work. You may not know my friend but if you can include her in your thoughts and healing prayers I know she'll receive them - thank you.

And thank you Big Bro for keeping me sane & safe yesterday.

Stay well my friends.

Getting to know you....

My last couple of weeks were spent putting the final details together for and heading off on another retreat - this time with my 'other' community - the Metastatic Women's Support Group from BCCA. What a time we had! Oh my my - the universe was looking out for us - perfect weather for 3 days in the midst of all the cold, cloudy and rainy days. In my mind the retreat should be call the Women, Wisdom & Wine retreat!! We laughed, we wrote, we 'art-ed', we shared, we laughed, we danced, we meditated, we walked, we ate, and we ate and we ate, and we had the odd glass of wine. Oh yes and we shopped like crazy women on the 40-minute ride to Langdale - who knew the ferry would have such great stuff!! I will one day head back to the Rockwater Secret Cover Resort - it is everything their website say it is - http://rockwatersecretcoveresort.com/ - stayed in a tent suite one night - totally decadent! Service fabulous, right on the ocean, surrounded by Arbutus trees, highly recommended by me! This is the 3rd retreat over 4 years with the Mets Group and an invaluable way to get to know each other in a way that doesn't involve cancer - which is pretty much all we have time to talk about when we meet for 1 1/2 hours twice a month so thank you my friends for inviting me into your lives and sharing your stories and laughter - I love you all!
One of my thank-you gifts from the participants - do they know me well??

Rest easy Candy.
Rest easy Rachel.

Snap... Part 2

I've been feeling 'fired' by this Dr. Manchild who I will now graciously call Dr. N. Two phone messages and two emails since last Thursday and then presto... just like that he called me late yesterday. Not sure who scored on this round - him or me. Dr.'s get respect - why shouldn't patients - I'm just sayin....

Now that we're back on level ground, we conversed - about stuff I really didn't want to know but unfortunatly must deal with. New talk about this 'blockage' in the old ureter/kidney so now we have to determine what it is. Could be a tumour, could be a stone, could be ?? I'm going with a stone - better than a tumour methinks. Now he's in action mode - wants it done ASAP - booking clerk calls 11 am today - I'm booked in May 4th for the procedures - and yes that's plural! Wait a minute, that's the day after I'm supposed to have a colonoscopy. In the theatre of your mind imagine - colonoscopy one day, urinary system invaded the next - not gonna happen!! Which one do I want to do more - tough call if you get my drift. So a date with Dr. N. May 4th it will be - yahoo.

Is this all more information than you need to know?? Such is the life I lead...

Stay well my friends

Rest easy Wayne.