M.I.A.

Well I've been MIA for far too long. No particular reason - just generally apathetic about pretty much everything. Knowing that it's mostly those close to me who read my blog I self-censor my thoughts so as not to concern anyone. But that was never my intent when I started to blog - I wanted to keep everyone in the loop - not just the good loop but the whole loop. Somewhere along the way I unknowingly decided that no news was better - better for you out there and better for me not having to admit that I'm not the pillar of strength I've always been.

Not that there's any really bad news but I'm just plain old tired of this cancer gig. I'm tired of getting permission to live 4 weeks at a time and then 'we'll see'. I'm tired of side effect - burnt skin, numb fingers, thin skin, sore/stiff muscles and this fatigue that sabotages not only my body but my spirit . My tolerance level has diminished substantially for oh so many situations. I'm sad - this isn't the life I expected or want. I want to take a year off - to regroup, to revitalize, to quite taking meds, to remember what it was like to see light at the end of the tunnel. The only light I see is more of the same and I hate it. To plan things with gusto - without restrictions of time or strength or appointments. And then maybe with an attitude adjustment, I can just get on with the show. But right now I'm frustrated and pissed off - a phase I go thru from time to time - this is one of those times.

Now on my 9th round of chemo and its wearing me down - perhaps you figured that out!! This may be the last round of this treatment - my kidney function is deteriorating as the chemo is very hard on the kidneys and there are/were tumours on my kidneys. My tumour markers are no longer decreasing either over the last 3 rounds which is a sign that the drug is likely no longer working. Had a CT scan on Friday and will get the results in a week or so. I'll see Dr. K around mid-September after this round of chemo and see where we go from there. Since starting this cycle on Thursday my thumbs have stiffened up again and my neck muscles are so sore I can't turn my head - perhaps I shouldn't drive for a day or two until that settles down!!

Despite my temperment lately, the summer has brought many lovely days my way. A beautiful hot day lunching & catching for hours with my precious forever friends Karen & Roy was such fun. We go waaaayyyy back - getting close to 30 years now. I love you two so much! A day sitting in the shade with my Callanish Writes companions at Van Dusen Gardens sharing our words, our tears, our laughter and our collective joy at just being together. A day at Ladner market with my 'I' buying up fresh produce & bread in the 30 degree heat - she so rejuvenates my spirit! A BBQ at Rick's house to admire his garden full of organic greens - (even the tomatoes are still green!)and devour a most scrumptious meal of rotisserie chicken, burgers, hot dogs, salads and more - thanks buddy - most excellent. A fun day with Debbie in the valley viewing the Jade Buddha for Universal Peace (a magnificent statue made of gemstone quality jade that was found in north-west BC) followed by a drive out to Irene & Dave's since Deb hadn't ever been to their place -thanks for the informative tour of the property Davey!! A short visit and sleepover with Lulu - and a catchup on a 22 year-old philosophy - oh to be 22 again (but know what I know now!!) And yesterday a short sweet visit with my dear friend Christiane who celebrated her birthday with a small open house full of friends and family. So grateful to spend time with Chris as she is failing but still such a part of all that goes on within her world.

A visit to the island early this week to support my friend Cass whose dad (Jake)passed away shortly before I arrived last Sunday. No matter the age or the family dynamics losing a parent is a tough go and I'm glad that I was there to hold her up as best I could - another forever friend - 45 years.... take care of your heart my Cass. Even tho my time there was short as I had to get back for clinic appts on Wednesday I had some special time with Gordo and quick visits with the kids and grandkids. Hope to get back to Port in the next little while for a longer visit under sunnier circumstances.

And now... I'm going to make some salsa and sit on the deck and read. I promise to be back here soon!! FYI - the song I downloaded has absolutely nothing to do with what I've written - Prairie Oyster is just one of my favorite groups...

Rest easy Jake.

A Little Catch-up

Just made the perfect latte ..mmmmm - love Sunday mornings. Not that I don't make latte's other days, they're just more delicious on a Sunday morning. And Ludovico Einaudi on my Ipod.. more delicious still.. I love Sundays! Listening to Eden Roc makes me think of Maryliz which makes me think of The Spacious Heart concert. What an evening. Made a date with my very dear friend Colleen to attend this concert at the Museum of Anthropology to listen to the world class delights of Maryliz, Lorna, Joan and Ariel - magical. With the ocean view backdrop, the loving friends, the inspiring invocation and the spoken words of Janie, Daphne & Kirsten I left with my heart full and another Callanish memory to treasure.

On the health front things are okay - not perfect but not bad. The fatigue is still a problem - one which I'm obviously going to have to accept, my hands seem to be getting the brunt of the burning from the chemo- fingertips swollen and getting number all the time and so red & tingly. I had an extra week off from the chemo again to recover a bit more but am now on another 2-week cycle. Tumour markers appear to be stabilizing - is that good or bad?? Little hurts and worries. Today my problem is swelling of the thumb pad and stiff thumbs - what's that about and where did it come from.. I'll see where it's at tomorrow. Back on antibiotics - this time with a sinus infection - I might as well stay on anti-b's for the rest of my life!! Was down with a cold for a week or so. Still doing the Pamidronate injections once a month. Last week I was in a room with a chatty guy who is such an over-achiever about his cancer - it was bizarre listening to him - but we all cope as best we can with this lousy disease.

What else?? Well my darling Danielle graduated with her Bachelor of Business Administration earlier this month. I am such a proud auntie - she has worked sooo hard the last 5-6 years working full-time and school part-time to accomplish this and now... on to her CMA. My sister and niece left for England yesterday and I so want to be with them but... Tracy said if I came they would just set me up in the shade of one of the beautiful parks for the day with a good book and they would come by and get me when they got home from their daily adventures... Perhaps I'll just step out onto my deck - it's way less expensive!

Summertime & the livin' is easy

Yes summertime is here - officially and weatherly - at least I'm hoping it's a trend. I've been tending to my ever-so-awesome deck and it's all decked out now for the summer!! Thanks to my bro's and my pal Deb for all your help! The BBQ is clean and ready to go, plants are planted, roses have bloomed, I'm encouraging my tomato & cucumber plants to continue to blossom, I already have more parsley that I know what to do with along with rosemary, thyme, chives and basil. Now the only reason I have all of those is that I read somewhere they help keep bugs at bay and I'm not the gardener in the family - I leave that area of expertise to Irene & Rick!! I'm really more about ambience....



Peaceful mornings with my coffee and the birds chirping away, afternoons on the couch or the chaise with a good book or just napping under the umbrella, evenings sipping something lovely with a warm breeze brushing by and the smell of dinner on the BBQ - how's that for for a visual!! Why would I want to go away on a summer vacation - this travelling is much more to my taste... Warm sweet tomatoes, melt in your mouth watermelon, iced tea, beer, wine, G&T's, hamburgers, chicken, grilled veggies ... I could go on and on but you get the drift I'm sure..

Now... I think I'll go get into that book I'm reading!

Nap, nap, nap....

Where does the time go.... I've been remiss in writing this last little while - don't know why - I usually always have something to say!! But I've just been poking along this last month doing life - you know - gettin' up and doing the day as it unfolds.

One thing I know for sure is that this chemo is catching up with me... fatigue, oh so fatigued - I get up tired, I go to bed tired and during the day - well, my body just seems to whine to me - have a nap Mar, sit down & read Mar, it's okay to do nothing Mar. At the same time my mind says c'mon you have to at least do one thing a day... and therein the problem lies. One thing?? What consitutes 'one thing'!! My idea of one thing seems to be quite different than what my friends and family tell me it is! This slowing down is a steep learning curve and I'm rebelling. So much to do - so little time.

PS to The Good, The Bad & The Ugly

In my 'good, bad & ugly' post I was venting about the lack of collaboration among oncology professionals. Since then I have come across this organization in the US that is working towards that very idea.


WHY STAND UP TO CANCER?

Happy Anniversary!!

I want to wish myself a very happy 5th anniversary!!! Monday, May 16th, 2005, 9:30am was the day I heard my re-diagnosis. Sunday, May 16th, 2010 will be 5 years of living relatively well with this disease. Never did I think 5 years ago that I would still be as well physically, as healthy emotionally or as content as I am 5 years later - in fact I didn't think I would still be alive - but alive I am!

I wrote this reflective piece in 2008:

"Die-Agnosis":

The day was almost ordinary except the phone rang very early… and I knew but wouldn’t say it out loud. Put on your cheerful face I said, be strong. But I know Sharon doesn’t work Mondays, why else would she call me into her office.

Get there ASAP – get it over with. Shower, hair, makeup, trendy little outfit – maybe if I pretend it isn’t so it won’t be so.

Sharon looks sad and compassionate, apologizing like it’s her fault somehow.

Say it isn’t so. It can’t be true. I don’t want to die. I want to see my kids grow up. I’m not done. I’m scared. Tears, tears, tears, my legs give way, Sharon holds me and comforts me.

Metastasis means death – this much I know. But now so much I don’t know. How can I tell my family AGAIN? Please say it isn’t so. I’m exhausted already.

Not an ordinary day after all – life as I knew it changed in a one-minute phone call.

Devastation is all around.

All I can think about it growing old – and this time wanting to.

Since I seem to be all about words this week celebrate comes to mind. Definition of celebrate: To observe a day or commemorate an event with ceremonies or festivities.

Those of us who live with cancer celebrate many things that might seem odd to others - we celebrate birthdays for sure but we celebrate 1-2-3-4-5-10 week, month. year anniversaries of anything pre and post, we celebrate new hair, ports removed, canes being discarded, getting thru the day without a nap, remissions - pretty much everything is worth celebrating.

I am celebrating 5 years I never thought I'd have....

The Power of Words

Over the past 3 years I have sat in many writing circles, committing my thoughts to paper, serious business this writing thing. Spoken words must be carefully chosen - what is said out loud may stay in the heart or mind of a person forever be it love, tenderness, anger, sarcasm, criticism - words can stick. Written words are different - you can cross them out, erase them, re-work them, you can write a journal, a memoir, a poem, some prose, the book of the century or simply preserve the thoughts in your mind. Callanish Writes IV is now published - an extraordinary collection of reflective words by remarkable people. Based on our desire the express ourselves on a deeper level and a willingness to explore our hearts. Thank you for sharing your words with me.

Still on the subject of powerful words consider these phrases that appeared in my latest CT scan report:

- ‘has decreased in size from 3.8 x 2.4 to 2.7 x 1.7’
- ‘these changes are stable’ – "stable" appears in many areas of this report!!
- ‘the remainder of the solid organs remain unremarkable’ (new favourite word!!)
- ‘the lung bases remain clear’

And my favourite phrase re the bones mets:

- imaging features are most suggestive of interval healing of bony metastases’

Healing?? Never thought I’d see that word in any of my medical reports!!

Needless to say I am doing the happy dance again!! Despite the fact that I haven't yet completed a full cycle of the chemo and have yet to get the side-effects manageable - it's working!! Impression: Positive interval treatment response. (from radiology report) Yahoooooo.... and way to go Mar!!

I'm off to Brew Creek tomorrow for a week-long retreat with Callanish - so ready for that! Life is good and I'm still on a high (unmedicated!) from my good news this week.

Stay well my friends - back on the 22nd.