Changing Times

February 19

2012-02-19T14:37:00.000-08:00

It's been a long time between posts - my tag line should read 'sometimes several months attack me at once'! Sunday morning with my coffee, Skype-ing with friends travelling in Arizona & checking in with others. Another gloomy February day -- I am surely ready for the gray to be gone and trying hard to recall the hot weather of Palm Desert.

I've been deep undercover these last few weeks finding it near impossible to connect with the outside world. Contrary to what many people think, I am really quite a reclusive person - not in an anti-social, withdrawn or lonely way or an unapproachable way (at least I hope not). But I'm a homebody and I find the longer I live with cancer the less I can deal with certain things. A friend asked me recently if I found living with cancer every day a burden. It seemed to me that 'burden' is the perfect word for how I cope - it is a burden for me. I would love to be one of those people who has bucket lists, who can live outside their bodies, who can see the 'gift' of cancer (that one is so beyond me). I would love to want to hang out and go out and stay out past 6-7 pm. I would love to be physically and mentally energized to meet each day. Those are among the many the guilt trips I go on each day - that I should be all those things and more, that I should stop indulging myself in this lifestyle and get out there and do something. Way too many should's. And I do a number of things - they're just more solitary in nature. The truth of the matter is after the past 6 1/2 years of metastatic cancer , and nearly 20 years from my first diagnosis, I'm bone weary. Add to that mix living with chronic depression for 40+ years. There are days when I'm not sure what incapacitates me more. Why I'm disclosing all this I'm not entirely sure - possibly because I've been saying no to so many people in my life lately and thought an explanation might be in order. I'm thinking that my current anti-depressants are pooping out on me (my technical term!) and am changing over to one I haven't taken before. That along with a little sunshine and longer days and I'm hoping against hope this combination will straighten me out and I will find my days less challenging and less overwhelming.

On the cancer front things are in limbo again. Going off my chemo for a month didn't turn out to be such a good idea - huge jump in my tumour markers. I'm now off the oral chemo and back on a hormone blocker - Exemestane - for awhile until we can figure out where the activity is. Also off my monthly treatment for the bone mets. Had a bone scan which looked stable and now awaiting results on a CT scan. Depending on those results I may have to start IV chemo which I find pretty devastating. Except of course if the Exemestane brings the markers down substantially. For now I'll hurry up and wait until March 21st to see what the next installment of my life will bring.

Even reading my fellow bloggers updates has been overwhelming for me lately and so today I'm going to try and catch up on one or two. Then directly to my new favorite thing - my recliner! - to watch some more Upstairs Downstairs.

So while this isn't the most uplifting post I've ever written it is an honest one.

Rest easy Shawna

Merry Christmas to my world!

2011-12-22T17:55:00.006-08:00

I’d like to say that this Christmas message is simply my way of being green but that would be pushing the boundaries of honesty! The simple truth is I just don’t do cards anymore. I am blessed with so many friends, some I see often, some I rarely see, some have been in my life forever, some I have met recently and some I haven’t talked to in years yet remain in my heart with cherished memories. Add to that list my great big ol’ loving family, my Callanish community and my Mets Group community – well I just can’t afford the postage….. makes me one lucky gal I’d say.

Health-wise this year has been a bit of a challenge but as I like to say I’m still in pretty good shape for the shape I’m in. While this old body doesn’t perform as well as I’d like let me assure you that my attitude and sense of humor (dark as it may be) remain intact. I’ve been on this ‘chemo light’ for almost two years now but thinking there’s a change coming soon. This cancer gig has turned into a full-time job! My oncologist however gave me a month off treatment for a Christmas present – best present ever! So on Dec 24th I will head off to Palm Desert for a couple of weeks of mindless R & R.

Living without a roommate wasn’t working for me and so to my/our great fortune Annee II and I found each other. For anyone who has known my other cats you can relax - Annee is so sociable, loves requires attention, loves to be combed and petted – she is the antithesis of both Webbie & Annie!

Yes... I am perfect

Our family had its share of engagements, birthdays, anniversaries and new sweethearts this year. We embraced the arrival of gorgeous little London Brielle who, despite being born with a severe heart defect, is now a thriving 5-month old who keeps proving everyone wrong. Here is a picture of her today waiting for her echocardiogram – she doesn’t look that impressed!

Yes... I am the rock star of Children's Hospital

I got away for two retreats this year – to the first ever Callanish Creative Arts Retreat at the fabulous Brew Creek Center close to Whistler and another retreat with my Metastatic Support Group at the Rockwater Secret Cover Resort on the Sunshine Coast. I could live on retreat! Not being much of a traveler though the furthest I went this year was to Whistler! I’m going to correct that situation by going to California in a couple of days.

So without detailing my entire year let me just say that It’s been busy, it’s been fulfilling, it’s been happy and it’s been sad. I can also add that there’s been many laughs, many visits, many writing classes, many sunny days on the deck, many manicures & pedicures, many glasses of wine, many great conversations and much contentment. It’s been another year of ups, downs and all-arounds!

Christmas is always a wonderful opportunity to connect with those in my life and in my heart all year round even though we may not always see or talk to each other. I wish for you all a wonderful Christmas season full of family, friends, love and great food! For 2012, I wish for all a year of good health, great happiness, much satisfaction and much success in all that you do.

Wishing you all peace, love and contentment,

Marlene
xoxo

And so this is Christmas...

2011-12-11T10:29:00.012-08:00

Her wish was simple
Peace in every nation
Joy in every heart
and a Mitten on every hand

That's it folks. All I want. I have everything l need or want. I have a family who loves me & I love them. I have friends that I cherish and that cherish me. I have my communities who give me more than I could have ever imagined and with whom I hope I give back in kind. I have a roof over my home - my sanctuary, my comfort, my safe haven; I have food in my fridge made with love by my 'meals on wheels' friends; I have coats and mittens and hats and boots to keep me warm in the winter; I have money in the bank; I have my little Annie who sits with me, listens to me, loves me unconditionally - well.. as long as I feed her, brush her and pet her; I have books to read and music to soothe my soul.

And while I may not be a picture of health - I have enough health, strength and resolve to get past whatever lies ahead next year.

I have everything I want.

Back from the edge

2011-11-06T10:09:00.011-08:00

Despite my best intention to write thru my latest meltdown every time I sat down to write I couldn't get any words to flow. Lack of concentration, lack of motivation, an abundance of apathy and general malaise! Then there's always my anxiety of divulging how life really is for me as I head to the black hole of self-absorption, fear and a scarcity of self-compassion. These times seem to coincide with bouts of bugs that I seem to get thanks to my not-so-immune system - in this case another bout of cold/bronchitis. I was actually sick when I wrote my happy port-a-cath post but was obviously too excited to mention it.

Too many meds & too many trips to the doctor - both my GP and the clinic. I missed Thanksgiving - although I am grateful to my sister-in-law for sending me 2 turkey dinners and the best-I've-ever-had pea soup to pop in the freezer to be enjoyed when my appetite returned. I missed my best friend's 60th birthday party. I missed a very dear friend's Celebration of Life as well as one of my Callanish friends. I missed a writing class. I was grounded. Reading, TV, movies, laundry, naps - is this my life?? Too much thinking time. Not coping very well at all. I did get out of the house to get some radiation on my hip - that was the highlight.

So really is this my life I ask myself? Where is purpose, where is feeling useful, where are the positive thoughts and feeling of contentment that I used to have? See that's the problem when I have too much time - staying in the moment is so hard. Will I ever live a tranquil life? How do people do that anyway? If you know please pass on your info...

Now a week or so of feeling better and realizing - again! - that I'm a gal that needs a project to not only keep my mind occupied but to feel useful. And so I've offered my services to my Mets Support Group for a couple of things. There is a 'quiet room' on the patient floor of the clinic that needs a little TLC in creating a tranquil and peaceful space for patients and/or their families to spend some private time. Anyone who knows me knows this is my kind of endeavor! I should probably check to see if there's a budget.... The other project is pretty substantial but with the help of Sue - who unfortunately has had to join our club - we think we can pull it off. We want to create a website for the Metastatic Support Group - a resource guide of sorts - oh my my we have so many ideas! Now neither Sue or I have ever built a website but we each have our 'peeps' and will be looking for advice/guidance/expertise and whatever you have to offer. Any & all ideas are welcome - from the Mets Group and from my blogger friends. Of course Sue is going away this week and I'm going away for Christmas so don't be looking for it anytime soon!

I'm getting back on track and feeling better. The radiation treatment was no big deal - only one treatment was scheduled. Next is a 'Orthopantomography' to check out the jaw discomfort. Sounds a little unnerving but it's really just a panoramic 2-dimensional x-ray of my jaw.

What always keeps me safe when I sink below my surface is knowing that with the right amount of patience and the support of my network I always surface and the knowledge that there will always be sadness and gladness in my world - it's my responsiblity to keep the balance.

Rest easy Jill W.
Rest easy Jill M.

Easy-Peasy

2011-10-13T16:34:00.009-07:00

Yesterday was time for my monthly pamidronate treatment and I think I may have appeared just a little smug when I waltzed into the treatment room. After our good mornings Nurse T. said 'well let's get that arm warmed up' and I, after puffing out my chest a bit replied ' I don't need to today - I got myself a portacath!' - like a child who wants to show off their new toy!! That's wonderful she says (visualize mutual hug) your life will be so much easier! And it was and it will be. With that I sat down in my recliner and watched as she swabbed the area and inserted the special needle needed for ports - with just a mild pricking sensation. That was it - 2 minutes max. It used to be anywhere from 10-20 minutes, 2-3 hot towels and then up to as many as 5 tries to get a vein. After pumping in some saline in to make sure all is well I settle in for my 60-minute treatment.. all the while making sure that I wave my arms about at every possible opportunity - because I could!

Patti Port-a-cath - my new best friend! She sits just under the skin of my left breastbone, seems to be relatively easy to get along with and while she does jut out a bit you'll all just have to learn to appreciate how she looks!! Cuz I'm already attached to her!

Thanksgiving

2011-10-09T10:39:00.013-07:00

It used to be that Thanksgiving was the one time of the year I would be aware of all that is good in my life. These last few years tho I recognize and acknowledge all that is good in my life on an almost daily basis - gratitude being synonymous with thanksgiving.

I am grateful for my understanding and wholly supportive family. All of them - my sister, 3 brothers, 8 nieces & nephews and 11 great nieces/nephews and all my surrogate children over the years. The essence of who and how I am.

I am grateful for the very many long friendships I have been blessed with - friendships that started in childhood and have stood the test of time thru teenage years, love, marriage, divorce, children and grandchildren, thru illness, sadness & losses, thru silliness, laughter, solidarity and the sheer joy of connection. My girlfriends and my manfriends - the foundation of my life.

I am grateful for all my 'new' friends and the paths that brought us together. I am grateful for all the friends that I have known over the last 6 years who shared their lives with me before passing away. There is a debt of gratitude to each them I cannot repay so I will pay it forward.

I am grateful for my communities without which I would not be able to bear so many things. To my Callanish community who continues to help me live in the now of my life and allows me to be as I am, which allows me to grow in ways I cannot articulate. To my Metastatic Cancer Support Group where we lay down everything, where we laugh and cry and commiserate and educate and compare notes on everything from treatments to side effects to doctors to shoes and travel.

I am grateful for the life I have created for myself over the years by virtue of these relationships - not knowing at the time that what I did, when I did it and the people I chose to keep in my world would lead me to this place of contentment. I am grateful that I was smart enough to banish the ugly, the wrong, the hurtful, the senseless and embrace the good, the moral and the honest.

There has been a question rumbling around in my mind this last while: Why have I been given all this time? I don't know the answer to that but I am grateful that I have been given all this time.

Happy Thanksgiving to my world.

Rest easy Martha.

De-Pink

2011-10-06T10:11:00.008-07:00

Oh there is a lot being said among my fellow bloggers about this whole 'Pink Thing'! The more I read the more I realize I'm not the only one with an attitude about the: A) Commercialization of Breast Cancer Awareness; B) The idea that someone out there thinks breast cancer is warm & fuzzy; C) The misconception that breast cancer is alway curable and D) That if you spend your time & energy putting on the right clothes and getting your makeup perfect and your hair or wig properly coif-ed you'll feel oh-so-much better about having cancer.

If you want to understand more about how why many of us BC/MCC folks bristle at the idea of being pink'd - here's a good place to start: http://cancerculturenow.blogspot.com/ . I've only just found this blog but Rachel certainly has the gift to get her point across - for me personally a great read and some other great blogs to connect to.

Plan A

2011-10-05T08:19:00.012-07:00

I've just realized I left you all hanging so just a quick post before I head off to my mets support group at the clinic.

Met up with Dr. RO last week and it's decided - we're going with Plan A - a little radiation to try and eradicate the new bone tumours. A great Dr. - very imformative, straight-up with possible complications - like trying not to get any of my bladder or colon when they 'hit' me - and answered all my questions to my satisfaction and the big plus - he had on the nicest suit & tie - none of that lab-coat look! Do I really judge some of my Dr.'s by the way the dress - seems so!

Dr. RO is away for a couple of weeks now and I decided that I'd wait till he get back to get started as the pain is bearable so likely I'll hear of the Plan in a week or so. He says that probably only 2 treatements for now and then monitor via Dr. O by way of scans etc unless I start feeling any new symptons. Which of course I have in my upper right arm/shoulder for the last 3 weeks although nothing showed up on the bone scan so I'll deal with that at my next appt in a couple of weeks.

Want to share my fabulous evening out with Irene & David last Thursday. My nephew Chad is a chef at the Fairmont Pacific Rim downtown - quite the luxury hotel I must say - in the upscale Oru dining room. Each month they have a feature dinner item and Chad's creation was the feature for September and being the proud parents we are (!) we went to behold and feast on his creation. We were treated like royalty and spoiled with amazing food. We moved thru exquisite appetizers to dinners. Chad's dinner creation of "Five Spice Venison with seared pine mushroom, sautéed brussel sprouts with kabocha squash purée and venison maple jus" was melt in your mouth delicious and we shared this along with 2 other scrumptious dinners. An then dessert appeared...

I'll let the picture speak for itself - 3 of everything chocolate - very happy that Chadwick was working the desert station that night! We were served all our courses by the chef's - Chad, Head Chef Yvonne, Sous-chef Chris - and Executive Sous-Chef Murray stopped by for a chat - everyone was so generous of their time considering the party of 140 in the private room. I think the way we were treated that night is a testament to how much they like and appreciate Chad - we of course know what a wonderful and amazing person he is!
Running late now!
Have a good week my friends.

Pink Scminck

2011-10-02T11:10:00.015-07:00

October is officially known as Breast Cancer Awareness month. My question is this - what about the other 11 months of the year? Is October the only month to say it out loud? To those in the BC community, and those of us with MBC, it would be a fantastical dream if October was the only month we had to deal with it.

Another question is - who decided pink was the right color for cancer? Back in 199? the American Cancer Society joined forces with - guess what - a pharmaceutical company. Conflict of interest perhaps. Then along came Estee Lauder Corp who created the pink ribbon as a symbol for awareness. Fair enough - pink is considered the color for the feminine gender. But let me tell you pink is certainly not the color of cancer. Cancer isn't even a color. It's a lifestyle, it's a job, it's exhausting and it's scary. It isn't pink scarves, pink jewellery, pink makeup, pink ribbons or magazines devoting their October issues to the cause of breast cancer. Cancer inhabits not just the body, it takes up more space in the mind than one can possibly imagine.

The pink world is out of control. Pink is now a business unto itself. If it's pink then let's associate it with BC. Let's create another pink T-shirt, another pink lipstick, another pink coffee mug. Every October thousands of businesses create 'pink' merchandise and sell them with the promise of some token % to be donated to cancer research. Do you really need anymore pink? Instead of buying something pink for $20 and having 10% donated to research consider simply donating the $20 - you'll get a tax receipt for that and you won't have to put that pink thing in the back of your closet in the pink pile. Or simply don't buy it. Unless you really love pink or are under the age of 10.

Rest easy Jill

The Next Plan

2011-09-23T09:49:00.012-07:00

I know a lot of people who, after a week of work, say 'TGIF' - well that's how I feel this week. The week started with that little procedure - the port. After being assured by the OR nurse that it would hurt and being assured by Dr. Port that he wasn't going to give me the full amount of sedaton I wanted, I 'came to' when he asked how I was doing. To everyone's alarm I couldn't talk - no voice, nada. Seems that my vocal cords and my throat had been frozen - perhaps too much freezing?? Anyway it was pretty scary since Dr. Port and the nurse said that had never happened in their OR before. After a lot of TLC from the recovery room nurses, lot of BP and heart testing my voice started to come back and we all breathed a little easier. My poor sister tho - part of this recover seemed to be coughing - which made me sound and feel like I was trying to toss a fur-ball - not my finest moment! Anyway a few hours later I had the voice back and the fur-ball was gone.

Just for the record - at this point I've been typing away and then poof - the rest of the post just disappeared - that's it - gone. That among other Blogger issues I've had over these last few months. I'm seriously thinking of changing over to wordpress - but I'm nervous I'll lose everything so we'll see. So let me re-create what I think I said!

I took Tuesday off, slept in, caught up on phone calls & emails, ate Tanya's amazing oatmeal chocolate chip cookies with my tea and generally slugged it out on the couch with my Annie. Oh, right. Remember the post where I introduced you to 'Delilah' - well I still have the same darling kitty but she's had a couple of name changes Delilah being too much of a mouthful. Tried Lila for a week or so, no go. Tried Lulu for a couple of weeks, still no go. Just kept calling her Annie - so she is officially named Annie - and I don't think my dearly departed Annie One will mind at all.

Now Wednesday. Overslept, horrendous traffic and an hour late for my labs. My 9:40 appointment was right on schedule tho and Dr. Oncology comes in and ... we talk. My CT scans are stable - no changes to liver, no changes to kidney situation and my lungs are clear. It's the bone scan - there are additional tumours showing up in the left hip area. Which isn't a great surprise to me as I've been having sharp pains in my flank and can 'feel' something that I can't quite explain. So now a two part plan. Plan A - see radiation oncologist (who will be noted as Dr. RO!) next Friday to see if he will agree to some radiation to shrink the tumours; if he agrees then I will do that and stay on this chemo light and we'll monitor what happens. Plan B - if he doesn't think radiation is warranted at this point, then I will stop the chemo and go back to a hormone therapy - Exemestane - to see if that will shrink them. My cancer is HR Positive and I've had good results with hormone therapy in the past. In any case - the times they are a'changing.

A quick note to all my friends who read my blog - I would really appreciate it if you could put your supportive & loving comments right here on my blog rather than on Facebook. I like to re-visit them when I have the need and they get lost on FB after awhile. I've made it easier to post here. Thanks - with lots of luv and big hugs.

Acceptance

2011-09-18T11:00:00.006-07:00

Some days posting a blog seems easy enough - right up until I start to do it. So many thoughts in my head, some trivial, some not and then the turmoil begins. How do I go about articulating something meaningful when I'm not even sure what to write about. This blog started out well enough and it's not that I'm not motivated to write it's just that I want to write about the right thing. I want to be honest, to be cheerful, to share the positive and not make too big a deal about the negative. But the negative can be a really big deal - and even tho I can see it thru the lense of a comedy skit or better still.. a reality sitcom - living with MBC is arduous both physically and mentally.

Tomorrow I will be having a "Implantable Venous Access System" - better know in my circle as a port-a-cath - inserted. I've been procrastinating on this for quite some time for various reasons - like not being brave enough to handle all those needles. In fact the actual bravery part is the acceptance of what is good and necessary and helpful. Whenever I'm confronted with a change I feel like I'm slipping down the ladder a little bit more. The now of my life is no exception. This last week has been very trying - I've had a bone scan, monthly IV treatment for the bone mets and a CT scan. I also picked up my reports from last month and see that my tumour markers have jumped 14 points in 30 days. Not a good sign. They have been gradually going up since last year about this time but usually anywhere from 1 to max 5 points during any given month. I suspect there willl be some changes pretty soon in my treatment plan. And that is hard to wrap my head around. I will see my oncologist on Wednesday to put the pieces of this puzzle together - anxiety isn't over-rated right now.

Rest easy Mona

Catching up - other stuff

2011-08-31T08:12:00.027-07:00

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

2011-08-31T06:11:00.010-07:00

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

2011-05-24T18:47:00.014-07:00

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

2011-05-15T06:45:00.014-07:00

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...

2011-05-06T08:19:00.012-07:00

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....

2011-05-06T07:10:00.022-07:00

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

2011-04-21T11:56:00.006-07:00

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.

Snap

2011-04-17T09:55:00.021-07:00

Lots of things snap - turtles snap, rice krispies snap, suspenders snap, mousetraps snap, you snap your fingers, elastic definitely snaps but me... I never snap. Until this last Thursday. Maybe I was just ornery that day in general but after waiting one hour for the urologist I left. I like to think that I'm a relatively patient person but being a good patient isn't always the easiest job.

C'mon - 60 minutes to anticipate something I really don't want to hear! I understand doctors get behind, I understand that sometime the patient just needs more attention - lord knows I've been there - but how about a little communication. My 10:30 appointment started off well enough - right on schedule they led me to the consultation room, where I sat waiting for 30 minutes with just a large poster of the urinary tract system on the wall for my reading pleasure. Fair enough I guess, he is a urologist after all but how much do I really want to know. Then Dr. oh-my-gawd-you're-just-a-manchild comes in, opens my file and says 'didn't you just have a CT? - yes I replied - 2 weeks ago. At now 11:05 he says well it's not in the file so I'll just go print it off the computer - be right back. Right back turns into another 10 minutes and he pops his head in the doorway - I'm still studying the layout of a male's urinary tract - and says won't be long now. THEN he proceeds to in the next consultation room with another patient. I am now provoked into action - how long is 'won't be long'? I'm no longer in the mood to find out since it's now 11:30 and I've missed my coffee date and could probably draw a urinary tract from memory. So I'm done - I'm gone.

The end of the story you think?? Not so. When I get home there's a message from Dr. Man-child left @ 1:15 pm - is that how long 'won't be long' is? I've calmed down somewhat so I call him back - like he asked. Now another 10 minutes trying to connect with a human voice but no I can't talk to him. Can I leave a message? 'She' replies - he'll probably call you back later - he usually does. No really I'd like to leave a message. 'She' replies - if I see him I'll tell him you called.

And now it's Sunday and guess what - haven't talked to him yet. Maybe Monday.

Things 'n Stuff

2011-04-01T07:16:00.008-07:00

Okay so I got tired of being laughed at every time I took my circa 2001 cell phone out so I stepped over the edge and got a SmartPhone. Today already I'm stressed at trying to figure this thing out although I have to say I looks pretty chichi when I whip it out of my purse!! Today's mission is, at the very least, to figure out how to answer it should anyone happen to call me.

Speaking of food - my freezer is full! Eating well is not one of my specialties. But thanks to my buddy Deb who loves to be in the kitchen, she offered to spend her Sunday afternoon in my kitchen cooking up some delights to freeze and thus, should eating occur to me I wouldn't have to think about what to eat - I can now simply open my freezer and decided WHAT to eat!! Stuffed potatoes, chicken dishes, meatballs, mac 'n cheese.... mmmmmm good - you are the best friend my friend!

And speaking of being on the brink of health I feel better this last couple of days than I have in a long while. Wednesday was my marathon day at the clinic - tests, appts and treatments. After lamenting over every pain and itch and every other minor and major discomfort of this last 4-5 weeks, my Dr. concluded that I should have a treatment of hydration along with my Pamidronate. And holy feel-better immediately! Even when I was 'in the chair' I could feel the burning in my hands/feet subside and now they no longer feel like they're going to explode. Even my energy level seems to have improved. Between that and taking a few extra days off before my next round of chemo - 17th round - we're hoping that my side-effects settle down. Here's hoping.

Sending a huge bouquet of loving thoughts and endless hope to my friend Susan - she has just had her first TheraSphere treatment and considering the harshness of this type of therapy seems to be coping well. Susan is so very positive and upbeat and brave and doesn't really have time for this cancer nonsense - her outlook and attitude so inspires me.

Stay well my friends

Just Write!

2011-03-26T08:57:00.019-07:00

Just write - anything - something - get started, the words will come. I've been saying that to myself for days and days now. The longer I don't blog the harder it is to get back to it. So who knows how today's blog will read! Looking back at March on my calendar, there's been a lot of activity - not that I've been all that active but I jot down all sorts of events others are doing/having/celebrating - just trying to keep up with what my friends/family are up to. I've had a few events this month tho that were special... and some not so special!

Special included seeing Smokey Robinson (yes, again) - I would see him perform every week if he was in town. He is the smoothest, sexyist, most romatic, talented soul singer of my generation and he's still got it for me - hard to believe he's 71!! Wait.. he can't be - that makes me how old?!! Very special was attending the wedding of my 'Paula-baby' and her chosen one - Darian. I'm sitting here smiling as I recall one of the lines of their vows when they giggled and promise to 'be partners in mischief' for the rest of their lives - it was so sweet and tender. I wish them every happiness possible.

Also special was to receive my copy of the 'Women and Cancer' issue put out by the Canadian Woman Sudies Journal of York University ( http://www.yorku.ca/cwscf/index.html). Allow me to brag for a moment! I did a presentation back in April 09 on behalf of the support group I attend at the BC Cancer Agency which was very well received and I was encouraged to 'morph' it into an article and submit it to the CWS for possible inclusion into this special issue.... and it was included... which allows me to say that I've been published!! While you can't see the actual article on-line (and if you're interested) I posted the piece in my Apr 2010 blog. This issue covers much territory regarding women and cancer but for me the most profound and encouraging parts are in the poetry and personal narratives of other women living in the same world as I do.

Callanish Writes V also arrived - another precious book of poetry by the Callanish community - a volume exploring 'Time' - our past, our present and our future. This volume begins with poems written to Kirsten - the first time in four workshops without her physical presence. And we felt her absence so strongly that it was clear to everyone that Kirsten would be the prompt for our writing that 1st session. Kirsten was the inspiration for what has become a Callanish tradition and we will continue to write in her honor with so much love and gratitude for creating a space within ourselves to write without fear or restraint or judgement as Callanish Writes VI begins in April.

On the not-so-special side of things my hot-water tank sprang a leak... what a disaster a small amount of water can create. After several frenzied phone calls a plumber showed up with a new tank and the restoration folks showed up shortly thereafter to rip up the flooring and all that goes along with that. Let me just interject this saga with this tidbit - I should have been at the spa for a massage/manicure/pedicure that day - now you know how 'not-special' this event was. My now insurance-approved plan is to have the flooring in the kitchen and guest bathroom taken up and used to replace the hallway flooring and then install tile in those two rooms. Just when I thought I was done with renovating! As of now I still have a cement floor hallway without closet doors - which is just special cuz I can not only watch but hear my laundry being done from my comfy chair!

Other not-so-special news. That cold I had in February? Well it didn't go away before I started my chemo and starting off not feeling very well made things go pretty downhill. For some reason or another - I'll sort that out this week at my appointment - my side-effects were pretty severe - burning hands & feet - in fact off my feet for a couple of days and such fatigue that the last 3 days of this round were spent on the couch reading and napping. I still have the burning sensations and my energy isn't what it should be. Wednesday will be a full day at the clinic starting @ 8am for bloodwork, then Dr. appt, then scans, then treatment. Not sure what the Dr. appt will bring - my last reports show my tumour markers up a bit again and my kidney function tests appear to have crossed the line from high-normal to just plain old high so methinks something will have to be done soon. I have an appointment with the urologist April 14th. And maybe I'll have my voice back soon - I've had laryngitis for the last week!!

Could that possibly be spring outside??

Stay well my friends.

Checking In & Catching Up

2011-02-27T09:34:00.010-08:00

Snow?? It should be spring here in BC but yesterday a dump of snow - well not really a 'dump' compared to most of our country but enough to make those little crocus and daffodil sprouts cover their heads. At least this means it will warm up now... and I'm ready for that.

Just getting over what is becoming a semi-annual event of cold/bronchitis. Have been feeling very crappy, cough-y and snotty along with a bit of a fever this last week but today feels like I'm on the mend thankfully. Being sick is boring - I've read, slept, watched TV, DVD's and eaten soup - I'm tired of soup now thank you very much. Except for last Tuesday - my 59th birthday - another year under my belt I'm grateful to say. Another thing I'm grateful for is that my pal Deb loves to cook and so a lovely dinner was prepared in my honor and that along with a bouquet of yellow roses (the color of friendship) made me a very happy girl. I love getting flowers - Irene sent me a gorgeous bouquet of spring flowers with pink/white lilies, carnations, gerberas etc and between flowers and birthday wishes, phone calls, cards and love sent my way I know how fortunate I am to have so many wondering caring people in my life.

Last Sunday was Kirsten's Celebration of Life. It was a beautiful albeit sad day and yet I found it oddly comforting to be with her family and friends to say my good-bye. It's hard for me to process that I won't talk or laugh with her again except for in the place she holds in my heart. The forecast for Sunday was cloudy and rainy - it was a cold, beautiful, bule-sky morning that arrived. Poems were read and Kirsten stories shared by people who loved her very much. There were lots of dogs, children and birds flying overhead. Kirsten had asked that we put a flower in the water in memory of someone we loved and so we all headed to the shoreline and sent the flowers out - anyone walking that beach Sunday would have surely felt the love. Take care of your hearts Ian & Susan.

What else? Well - I'm starting to think about getting another cat. Annie's been gone two months now and coming home to an empty house isn't the same as coming home to a cat who ignores you!! She really didn't all the time - the minute I sat down she was on my lap and for the most part had to be able to see me from where she was. I've had a lot of trepidation about this right up until this morning when I read a blogger friends post about his dog. And realized how much I miss the company and comfort of a pet. Someone to just hang out with and talk to (yes!!!). So my mission this next couple of weeks will be to find an adoptable cat from the SPCA or VOKRA to come and share the ups and downs of life with me. I have criteria tho that I have to keep reminding myself of - NO MORE long-hair cats. Webbie & Annie were both Persians and would only go to the vet to get their hair done - no brushing allowed. They both had to be put under in order to get groomed and their do's cost 3x as much as mine - not that I minded the financial cost but the physical cost to them of being put under all the time worried me. So with that in mind I will being my search.... more to come on that.

Healthwise things are fairly status quo. I've been on Capecitabine (Xeloda/oral chemo) for a year now and while my tumour markers are are slowly on the rise but not out of control I'm optimistic that I'll get a few more months from this treatment. The fatigue unfortunately isn't getting any better and my hands/feet aren't either but a small price to pay. Kidneys are still an issue and I have another scan at the end of March that will tell us if it's time for the stent or not.

Stay well my friends.

My Friend

2011-02-08T08:56:00.006-08:00

My sweet sister-friend Kirsten passed gently into the night early Monday morning with her Ian and her mom beside her. And I'm sure her dog Finnegan somewhere very close. I am a better person having known Kirsten and her spirit will always be alive in my heart.

Rest easy my friend - I miss you already

A Candle For Kirsten

2011-02-05T16:52:00.028-08:00

Kirsten has said that it would give her great comfort if her family and friends would light a candle for her. She is not doing well and my heart is heavy.

Kirsten was unable to attend the Callanish Creative Arts Retreat last week and she was so missed by all - but her pictures were there and her spirit floated all about us. She was so in my heart that I had to express it in words and so I dedicate this piece to my friend:

FRIDAY NIGHT THOUGHTS OF KIRSTEN - JANUARY 28.11

Tonight I write

For you

My friend

My sister friend

My forever friend

You have graced my life with your friendship

My home with your presence

My heart with your kindness

My eyes with your smile

And my soul with your words

You've taught me the art of letting words simply appear

without having to hunt then down

You introduced me to Prudence and let me know

just what kind of a friend she can be

Wiser in your years and gentler in your spirit

You've given me insight into how

the wrong words can be made right

All the while embodying wisdom, spirit and fun

I feel your presence deep in my heart & deep in my soul

For I have learned so much sitting with you these past years

And want to be just like you when I grow up

You've been enveloped in every part of my being these past few months

Now you know I'm not a praying kinda gal

But I wonder, does screaming at the universe to look after you

count in some way

And so tonight I hold you tightly

and want more of you

I won't say good-bye - ever

Not tonight - not ever

Due Tramonti (Two Seasons) by Ludovico Einaudi is a favored Callanish piece introduced to our community and so often played for us by Maryliz - it feels like the right piece to play.

A New Year Begins..

2011-01-02T10:47:00.019-08:00

And so 2011 arrives... 365 days of new memories to make and cherished memories to reminisce about. Who knows what this year will bring for any of us? My wish for all of you is a year of peace, health and contentment - in all that you do and for all that surrounds your world and your families.

As I write it is a beautifully crisp day outside my window with birds chirping and blue sky as far as I can see - a memory I hope will come to mind on those rainy dreary days to come. These types of days remind me of growing up in Kelowna when the winters were soooo cold but so beautiful, when we could skate on the lakes and run & slide down the iced roads on our boots - when being outside when it snowed was just fun!

I've had a particulary difficult time this year being in the holiday spirit. Maybe lack of energy, maybe the excessives of the world during this time, maybe this, maybe that, I just haven't been 'feelin' it'. So quiet it was - family was the ticket. My favorite gift this year was a visit with my Chad - he drove us out to my sisters on Christmas Day for dinner and I had him all to myself for 2 hours - a luxury and a memory to cherish for the coming year. He's a busy lad so don't see him as much as I would like to! Fabulous family time over Christmas & Boxing days and then home to rest up and relax. An amazing New Year's Eve dinner cooked by my ever so wonderful friend Deb and home by 8:30 - perfect! Then yesterday we went to the Festival of Lights at Van Dusen Botanical Gardens - it was an amazing display of dancing lights, thru Candy Cane Lane, Gingerbread Wood and the Golden Chain Walk - a perfect albeit chilly evening to walk the grounds.

December in general wasn't my best month of 2010. I took a fall early in the month and hurt my leg pretty bad; that seemed to lead to some problems and I landed in emergency with what they thought might be a blood clot in my leg - thankfully it wasn't. Still don't know what it was so I'm classifying it as 'Just one of those things' for now. Then on December 23rd I had to put my little Annie down - everthing happened so fast with no warning - took her to the vet on the 21st where she was diagnosed with a very poor prognosis of kidney cancer - she hadn't displayed any real signs of being sick until Sunday when I found a lump on her left side but from then she went downhill very fast. My heart is broken and I miss her.

Healthwise things are as they are. Had a scan last Friday and see my oncolgist on Tuesday. Not sure what that visit will bring as my tumour markers are creeping up a bit but am hopeful that I will get a couple more months from the oral chemo. I'll be talking to him about some new aches and pains that have come up this last month or so as well - I like to think they are just delayed side effects but best to be sure.

Resolutions?? Not me - way too much pressure! Instead I have a 'Maybe List' and in no particular order here are some of the things I may do this year: maybe paint more, draw more, start a yoga class (again!), walk at least 2-3 times a week, maybe eat better, maybe spend more time with friends and stop being such a recluse, maybe go somewhere warm in Feb/Mar, blog on a more regular basis, and for those who really know my bad habits (and for those who don't!!) - maybe stop smoking Maybe do some volunteer work - maybe not. Maybe just spend the year being the best I can be - that seems not only the easiest but also the least stressful!!

To all my friends, supporters, readers, and to my family - I wish you everthing wonderful this year and always - you all mean so very much to me.

Rest easy Annie...

For the love of Jeanne..

2010-12-31T09:33:00.012-08:00

My wonderful, spirited, funny and determined friend Jeanne left our world in the midst of peacefulness and contentment on December 19th. An amazing girl by all descriptions - I learned so very much from Jeanne over the too few years I knew her. She had an incredibly open heart, wouldn't judge an ant, huge compassion for herself and others, loved the great outdoors and everything in it and from what I understand played a mean game of euchre! And funny... we shared the same unbalanced sense of humour!! So many laughs and quite a few routines Jeanne & I... and of course Jeanne in her own right. And let's not forget how she loved to dance.. and dance.. and dance.

Jeanne and I sat in many Callanish circles together - on two retreats, three Callanish Writes series and many meditation days. The depth of her writing contradicted what passion could be held in such a little body - each word carefully chosen as the truth of her spirit. Jeanne's passing leaves a hole in my heart at the same time as I appreciate how much I received from her. I am a better person for knowing Jeanne - she was truly a "Phenomenal Woman"...

Rest easy Jeanne...

A Gift to Me

2010-12-11T10:58:00.016-08:00

I used to be a great Christmas shopper, loving to buy things I wanted others to have - I could always find the funny, the odd, the weird and sometimes what people wanted but not always! I loved the evenings wrapping gifts with a glass of wine and my cat trying to undo what I was doing and chomping on the ribbon. Wrapping bottles in socks, money given in rolls of coin, small gift = large box and my favorite - wrapping itty-bitty stocking treats individually! Over the years as 'my kids' get older shopping has became about what they might need not necessarily what I think they should have. So we've gone from plastic tool belts & dumptrucks and dolls & games & glittery makeup to fundamentals - excellent for them - not as much fun for me. Mind you there are traditions I just cannot break and those gift will go on for eternity!!

One of my traditions over the last several years is a 'Gift Card' from World Vision. Over the years our family has given the gifts of mosqito nets, roosters & hens, cozy blankets, textbooks, wood-burning stoves and fruit trees among others. These are life-changing gifts for other less fortunate children and/or communities and a beautiful thought to hold on Christmas morning amid the laughter, the gift opening and the sheer joy of being with your family. http://www.worldvision.ca/

So the gift to myself this year is John Paul Tuyizere from Rwanda - my latest World Vision sponsored child. Look at that face and those eyes - how could I not bring him into my heart? He's 6 years old and within the next two weeks he will learn from WV that he will be able to attend school and get medical attention until he's 18 years old - a life changing situation for him and for me as I get his updates and watch this little boy grow up.

Today's post is reading like a World Vision promotion but it's not - it's just something I do and feel like somehow I am making a change in this world of ours however small.

Stay well my friends

What to do??

2010-12-09T09:45:00.011-08:00

Pretty much every day I look at this lonely little blog that just wants to be loved and wonder what am I going to do with it. When I started to blog it seemed like such an easy thing - just a note or two every couple of days or so, a little this, a little that with the odd rant thrown in. But you know it's just not that easy and my life just isn't that exciting nor am I a particularly fascinating person - in fact my life can be downright boring and uneventful!

There's a certain quality of 'nothingness' to my life that I really quite love lately - a kind of quiet shuffle through the days and weeks. A freedom from all the chaotic years of working, doing and being. I deserve this! And so maybe just to write about the mundane is the key - most of life I think is mundane but it's what you see and appreciate about the mundane (did I mention mundane??). Because at the end of the day you just don't know how what you say or what you do will affect the world around you or the world within you. And there is a point to everything we do.. sometimes we simply don't know what that might be. My world is filled with amazing people that I cherish even tho I may not see them on a regular basis and is also filled with much love and laughter. If that defines mundane I'll take it any day.

And so I'm back on the blog - it just might read a little differently now. Next quandry... to keep the Ipod or not??

Rest easy Diane..
Rest easy Jacqui..

Stay well my friends

Decadence

2010-10-29T12:31:00.013-07:00

It's pretty decadent to have someone clean your house while you sit at your computer and read blogs doncha think?? Especially when you're single, your cat isn't that messy and you're in relatively good health!! There's about to be an upheaval tho - I'll have to move to the living room soon so she can clean my office.... oh Jen how I adore you!

I'm throwing all my everything behind my beautiful friend Kirsten who is having a very very hard time of it lately... she is struggling to get some serious issues under control. And to my fabulous friend Jeanne who has embarked on another ride with chemo - Jeanne - this blue is for you!

There's such a feeling of helplessness when I see these two magnificent people going thru the all the shit that is cancer when they have both already endured more than they should have to. Or anybody should have to. It's that simple. Figure this - you're sick, you've got cancer - and the answer to that is.... let's make you sicker - sicker than you already are - with the goal to make you well again. Please somebody somewhere someday soon - discover an easier way for those in treatment to reach that goal...

It's a musical kinda weekend for me. Tonight - well I'm just beside myself! Tonight I will spend a couple of hours in the company of my not-so-secret inamorata - Kris Kristofferson - he's probably the only one who doesn't know! Sexy, talented, handsome, crazy, funny and a poet for all seasons - I was smitten by that man many years ago. Yup - I could just sit and look at and listen to him all day long but I'll settle for a front(ish) row center seat and gaze longingly up at him with the ridiculous notion that he'll notice me and ask me back-stage to chat!! A girl can dream. And then tomorrow 'Grease' the musical at the QE Theatre. How much fun - I've seen the movie several times but never live so really looking forward to it.

I'm finally feeling better after a two-week bout of bronchitis along with a very bad cold which not only knocked me off my feet but put me in emergency for a day. Breathing was quite a problem as was trying to talk and laughing was definitely out of the question. Didn't experience the great outdoors for almost two weeks other than my oncology appt and missed out on what I know would have been a fabulous evening with my friends Merv & Anne from Kelowna. Feeling crappy from the bronchitis overroad feeling crappy from the chemo - hurray for Prednisone! I'm a few days into my two weeks off from chemo and hope to have my strength back before the next round.

Stay well my friends...

Early Morning Ramblings...

2010-10-21T06:35:00.013-07:00

4:30 AM - my eyes slammed open and I knew... just knew this was going to be a long day! Explain to me how I can sleep till 11am one day and 4:30am the next - whatever happened to to a good solid 8 hours? Too much thinking time getting up this early. So how about a blog post? Of course now most of those thoughts have dissolved or become murky in my mind but these are the leftovers.....

Random Thoughts:

Re-evaluate the way I post - I don't write for days or weeks or sometimes even longer and then a long rambling post - I'm going to attempt more regular shorter postings - maybe even lighten up - no promises tho..
What about my 'Bucket List"? What do I want to do before I die - not that I'm dying anytime soon I'm happy to say. But.... you gotta watch out for the bus!
My failing memory - is it chemo or is it age or is it laziness? My brain just feels broken these days - i need some mental stimulation.
Annie really needs to get her winter hair-cut. So do I.
Do I want to travel? Or do I just think I should? What's wong with staying in my comfort zone? Just cuz my friends & family are going to warm, sunny, exciting places...
Should I trade in my Honda for an Altima?
How much brown sugar can you put on your oatmeal before it becomes unhealthy??

My medical update is pretty much status-quo. Now on my 13th round of chemo and while the it appears it's keeping the cancer at bay, the biggest concern now is my deteriorating kidney function. Seems a tumour is blocking my right kidney and something needs to be done. I'll have to have a stent inserted, probably in the next few months, to save the kidney but for now we're just going month-by-month. Not a temporary situation - I'll have to have the stent changed every 8-10 weeks forever so stalling until just before I get into any serious trouble seems to be the way to go on that one! Aaaaaaraghhhh!

Missed the last two Callanish Writes classes because of a cold/bronchitis for the last 10 days. Excited for our next writing circle. Sending loving positive thoughts to my darling sister-friend Kirsten (and CW facilitator) who is having a pretty rough go of it lately - I' hoping we both make the Nov 2nd session.

I'm off to do my important job today - a manicure/pedicure - wishing you all a good day!

My Painting Experience...

2010-10-12T10:44:00.013-07:00

Well I did it... I went, I painted and I had fun. Well for the most part anyway. Anxiety over the whole weekend almost paralysed me starting with the border using my Nexus pass for the first time - irrationally fearing that I would say something that would end in my getting schackled and thrown out of the US forever... but the nice fella said - Is it just you in the vehicle (duh!!), I said yup (probably said Yes Sir) and he said 'have a good day' - easy-peasy. Now to find my chosen B & B in Capital Hill. Where?? I've only ever stayed in downtown Seattle but my in a moment of bravery I said to myself if I'm going to be brave let's jump in with both feet - never been on a painting workshop (cuz I'm not a 'painter') and never stayed in a B&B. The Shafer Baillie Mansion was magnificent - amazingly restored in every detail, in a neighborhood of other old and beautiful homes on streets lined with colossal towering trees unfolding the exquisite colors of fall. Having said that, I think I'm more of a 'hotel' kinda gal although if I was travelling with someone else I may feel different - not totally discounting staying in a B&B again.

The Painting Experience was .... well quite an experience!! Fortunately I've had much Callanish 'training' in the areas of deep breathing, staying in the moment and acknowleding my inner critic!! This workshop embraces the idea of exploring your personal experience by putting brush to paper - without judgement, without right or wrong, and without any commentary from other participants. A practice I find very liberating. To peel the layers of your own onion so to speak. Although I didn't know it when I started out Friday night, the next 2 days were spent creating and putting color to the heavy load of sadness I've been carrying this last few months. And it was cathartic.. and not without a little humour I might add!! I learned a lot about the 'act' of painting and may now be inclined to break out my paint & brushes at home - and no... you can't see my work!

Trying to get back to to where I was staying was a nightmare - I got lost all three days. First night I ended up out at the Seattle Port on Hwy 99 - felt like I was almost in Olympia - that night it took just over an hour to find my way back. Saturday night in the pouring pounding rain I ended up in the University area - where to my delight there was a football game happening with more roadblocks, cars, people and police than I have ever see in one place. Saturday night get-back time was 1 hour and 45 minute - including 5 minutes on the side of a street having a meltdown. Sunday I had a plan - if I couldn't find my way the first time - and I didn't - the plan was to go right into downtown and get on I-5 North and find the right exit from the freeway - which I did and spent only a brief 40 minutes getting back to where I started. Not bad considering Fremont is only 15 minutes from where I was staying. Perhaps a GPS is in order....

Anyway after a mini-shop at Nordstrom's I headed home. My angst at crossing the border - this time with purchases over the limit - started to close in... OMG ... handed the gal my declaration slip and she says 'Have a nice day' - perhaps I should paint thru my paranoia!! Home safe, sound and very very tired.. feet up today - that's my plan - no GPS required.

Stay well everyone.

Rest easy Diane.

She loved blue..

2010-09-11T08:35:00.013-07:00

Christiane loved blue ... navy, sea-blue, turquoise, sapphire, teal and any other shade you can think of. She also loved green ....blue-green, jade, forest, sea-green, kelly and any other shade you can imagine. She loved scarves. She loved color as evidenced by her lovely cozy home. She loved Ellie. She loved hats. She loved her family and she loved her friends. She loved God. She loved to live. She was a great 'hugger'. Christiane - a soft-spoken, unpretentious woman with eyes that looked right to you and a smile worth a million dollars. Chris passed away on Wednesday morning at home enveloped by the love of her Ellie and her mom. I said my adieu to her on her 49th birthday celebration a couple of weeks ago, knowing that her time was very near. In our community we brace ourselves for these times, not knowing when and wishing never again. And my spirit snaps and the tears and anger come. Despite the heartache and sadness I could not be without my community, without the many hours of holding up, shoring up, comforting, laughing, eating, writing, meditating, appreciating what is and trying somehow to make sense of our worlds.. each so different but for the commonality that brought us together.

And so I have decided that in honor of Christiane I will take the brave leap and attend the Painting Workshop in Seattle Oct 8-10 and I will paint in blues and greens and yellows and oranges and every shade therein. For her .. and for me. I need some color in my world.. so thank you Chris for inspiring me one more time!

Rest easy Christiane

Some days are diamonds... some days are stone

2010-09-02T09:52:00.012-07:00

Sweet September. My favorite time of year - like New Year's - only earlier! I do better in the cooler months for some reason, this year the heat was especially hard on me. But I love the cooler temperatures, I'm more inclined to be outdoors and life just seems more settled. Even though it has been centuries since I went to school, this feeling clearly goes back to the excitement of the unknown of the new school year. And just to make it all the more real, I bought myself a couple of new school outfits yesterday! And the best part of that is, because my body temp is generally in the upper end of the scale now, I get to buy summer clothes at ridiculously low sale prices and wear them all winter!

This last couple of weeks has been very hard on my heart with the passing of some people very dear to my heart. My dear friend Raymond passed gently into the early morning hours last Tuesday and while I mourn his loss, it cannot possibly parallel the loss to his partner Justin. Raymond was a delight in my life although we didn't know each other well or very long. But we had that Callanish connnection and with that we were able to absorb the deep, the light, the love and the laughter that is common within our community. Because of the situation most of us find ourselves in we tend to forego the time restraints of social niceties and just get down to heart of the matter -the friendship, the support, the real relationship part. Time is not something we take for granted in our community. Raymondo and I met at a Callanish Writes series last year which seemed to be a very liberating endeavor for him - he wrote some truly honest and heartfelt prose/poetry. And so to you Raymond there will be no more midnight cancer and for this I am grateful.

And dear sweet Grandma Mary - how you will be missed by your family. My sister-in-law's mum passed away quiety and softly on Friday morning - no matter the age it is difficult. I will so miss seeing Mary at all our family gatherings - you could always count on her to be there and hold court! I will miss reminding her that I'm Robert's sister and listening to her stories. I will miss seeing the love and pride in her eyes when she looked at her family - children, grandchildren and great-grandchildren and will miss the seeing the kids tend to you with such love and affection and the teasing banter between you and them - a condition inherent to the well-being of the Mills clan.!

Finished my chemo last Wednesday so on the upswing for a week or two - just wish my feet and hands were in better shape... oh yeh and my memory!! Next checkpoint - Sept 15th. Considering whether or not to attend The Painting Experience workshop ://http//www.processarts.com/ in Seattle in October. I registered for a class last year but couldn't make it so I do have a deposit with them - but am I brave enough - that's the question. And three days away from my sanctuary?? Step off the ledge Mar!! Callanish is offering Restorative Yoga classes starting next week - so looking forward to that. And then..... Callanish Writes V starts in October - I loooovvve those classes. So in general trying to decide what to keep myself busy with as the long sunny days turn to cooler autumn days and longer nights... which means I can go bed when it's dark rather than when it's light out!!

Today may well be the last of our sunny days for this week so I'll head to my deck which is sunny with a lovely breeze right now and get started on The Girl Who Played With Fire - 2nd book of this series by Stieg Larsson and I can't stop reading!!

Rest easy Raymondo
Rest easy Mary
Rest easy Dave

M.I.A.

2010-08-21T11:41:00.009-07:00

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

2010-06-27T09:23:00.007-07:00

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

2010-06-26T10:59:00.011-07:00

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....

2010-06-13T11:16:00.004-07:00

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

2010-05-30T10:17:00.002-07:00

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!!

2010-05-15T09:22:00.016-07:00

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

2010-05-14T10:32:00.010-07:00

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.

The Universe Says Yes To Me

2010-05-08T08:30:00.003-07:00

One of my favorite poems that props me up when I'm unsure of..... anything!

The Universe Says Yes To Me

I asked the Universe if it was okay to be melodramatic
and she said Yes
I asked her if it was okay to be short
and she said it sure is
I asked her if I could wear nail polish
or not wear nail polish
and she said honey
she calls me that sometimes
she said you can do just exactly
what you want to
Thanks Universe I said
And is it even okay if I don’t paragraph my letters
Sweetcakes the Universe said
who knows where she picked that up
what I’m telling you is
Yes Yes Yes

Adapted from the original poem by Kaylin Haught

My Day of the Week

2010-05-02T08:46:00.014-07:00

I love Sundays - it's always been my day of the week. The early morning tranquility, a comfortable day of solitude when I can do or not do. Even all the years I worked I loved Sundays - to putter, to nap, to read, to recharge. It's the same even now - a quiet day generally devoid of any plan or commitment. Just me and Annie - hanging out.

Last Sunday morning I grabbed my coffee and sat outside listening to the sound of the huge crashing waves and watching crazy surfers on the ocean in Tofino. Matter of fact I did that pretty much the 4 days I was there. Had a fabulous time communing with Mother Nature on the beach and in the trees. Discovered the fabulous 'Tofino Botanical Gardens' - the highlight of the trip for me. A network of paths and boardwalks thru flower and herb gardens, a duck pond, and into the forest, where clearings have been transformed into a series of pocket gardens and art installations. The rainforest itself is untouched and stunningly beautiful and inspirational. Other paths lead down to the the clear waters of the bay. If you ever get to Tofino I highly recommend a walk thru the gardens - it'll be good for whatever ails you or you can simply appreciate the amazing landscape we are blessed with here on the West Coast.

So Dr. Mills didn't quite get what she wanted!! But the good news is that my tumour markers are down AGAIN!! Even with not being able to manage full 2-week courses of treatment this Capacitibine is surely working for me. Dr. K. wants me to stay on it and I agree despite the side-effects. So we'll keep tweaking the dosage and the treatment schedule. By the time I start the chemo again this Thursday I will have had almost 3 weeks off and hopefully by then I will have healed completely. He's dropped the dosage again - to 2600 units per day so we'll see what this round brings - nothing I hope. If I still have problems then we'll work on the length of time I take it. Apparently this oral chemo can be a long-term solution for me if we can just get the side-effects to a manageable level. My quarterly tests are this week and based on the tumour marker tests we both feel very optimistic that they should be 'good' - won't know till I see him the last week of May but I'm not going get my knickers in a knot about it. Feeling positive!! And of course he had the most fabulous new tie on! I'm sure he does that just for me....

I came home to some shocking news - my friend Irene in Kelowna passed away. She had a stroke on Friday and passed Tuesday. An amazingly good & kind woman, in seemingly good health, jogged to/from work every day, awesome husband & children & grandchildren, the rock of her family. One never knows what any day will bring and the idea of living your life in the now has never been clearer to me than it is now. Gerry - my heart is broken for you and your family.

Started to put my deck together yesterday - always a big job! I may have to whine to one of my brothers for some help this year - any takers guys?? Vacuuming the winter away, moving things about, hauling up from the storage locker and then finally.... sipping a lovely little cocktail (complete with fruit and a little umbrella!) while lying on my chaise underneath my big ol' floppy hat enjoying the sunshine and heat... the vision that makes all the cleaning and hauling worthwhile!!

Stay well everyone.

Rest easy Irene - I will miss you
Rest easy Rita B.

The Good, The Bad & The Ugly

2010-04-21T09:07:00.010-07:00

The Bad:
Well I'm not making it thru this 4th course of the oral chemo - more hands/feet burning so I'm off it again after 10 days. I called the clinic on day 7 and they said to go off it right away but decided to be a martyr for a few more days.... Anyway it's done for this round and we'll see what my oncologist has to say next week at my appt. Dr. Mills (that would be me!) thinks that because my tumour markers have dropped I may be able to go back on a hormone treatment for awhile however Dr. Kennecke (the real doctor) may not agree. Back in January I recall him saying that if I couldn't tolerate this drug, IV chemo may be warranted. I so don't want to do that but will adjust to whatever is next as always. I've said before how difficult it is to stay in the 'now' of my life and not worry about the next test or appt or what next month or next year will be like - this is one of those times. The fatigue is catching up with me as well - another side effect I tend to ignore. And of course fatigue = cranky!!

The Good:
So to combat this fatigue & crankiness, tomorrow I'm heading off to spend some me time with Mother Nature in Tofino (Long Beach) for a few days with my pal Deb. Pacific Sands Resort - right on the beach - perhaps some storm watching, some sun, some walks, the sound of surf and birds. I've packed more books than I can possibly read, my drawing stuff, my Ipod and some nice warm blankets so we can sit out on the patio and watch the waves. Haven't been to Long Beach since I was in my 20's. On the way we'll stop over in Port Alberni for one night to visit with Deb's brother and my very best forever friends - Cass & Gord. Good friends, good laughs, good food and without a doubt some good wine!

The Ugly:
I'm sending my hopes, my prayers and my angels to watch over my dear friend Jill who has has just been diagnosed. Cancer is shit - will it ever end? I'm convinced that it could end - if politics and money wasn't involved - if cancer wasn't such big business there would be a cure. I'm convinced that there are dedicated researchers out there who want to share their massive amounts of information with each other and that everyone has a piece of the puzzle. I believe that sharing the knowledge and facts that each of these scientists possess the world would see a cure for this devastating and often fatal disease. And then they can move on .... to so many other diseases that need attention as well.

I feel better now - thanks for reading!!

Hope, Hopeful, Faith, Optimism

2010-04-09T11:01:00.007-07:00

Call it what you want as long as you have it. Have it in all phases of your life, have it for yourself, your family, your friends, your acquaintances your neighbors, for people you don't know, fill up on it, believe in it and live it.

I'm feeling very optimistic this week - test results show my tumour markers are down again!! Back on the chemo yesterday for another two week round and have a CT scheduled for early May that will hopefully confirm either shrinkage or stability - I'm good with either! The lack of sensitivity of some Dr's bedside manner can take you by surprise sometimes - consider this last appt. I had a stand-in Dr. do my check-up before I saw Dr. K. I felt like I was interrupting her script with my questions and that she was far too busy to see me - aren't I a patient? Isn't that what she does for a living? Anyway I did manage to get my question in re the odd dizzy spells I've been having the last couple of months - were they related to side-effects from the capecitabine? No - I don't get headaches, no - dont'get them all the time or even a lot, no - sleeping isn't a problem. Her reply - "Well dizzy spells aren't normally one of side effects that we know of so if they persist we'll do a scan to see if you have brain mets." Just like that - cold & straight. Now brain mets isn't something I've ever worried about nor has it ever been mentioned in any conversation - the cancer is in my abdomen area. Why would a Dr. say that - like that - like there was no possible other reason than brain mets for the odd dizzy spell. I've told Dr. K. that she is not on the list of Dr.'s I want to see again. And I have faith that I don't have brain mets and she was just way out of line.

My dear sister-friend also had excellent news this week - she's been fighting a long time and deserves every bit of good news she can get - you go girl!! And from what I hear Jason is still recovering well and gaining his strength back - so if you're reading Jason - keep putting one foot in front of the other!!

I attended the White Rock Nite of Hope fundraiser last night - what an extraordinary event they put together - sold out again this year. A dress-up nite for me - rare occasions now but with my lovely nieces we showed up and did our our best to add to the fundraising total!! The goal was to raise $500,000 and I'm pretty sure they went well over their goal. It's a huge event and inspiring to see how a community comes together to support the CBCF - the sponsors, the donors, the volunteers - a huge project that I'm sure takes all year to prepare for.

Part of the evening is recognition of breast cancer survivors in the audience and last night they asked the survivors to come on-stage for a tribute. I never know what to do in these situations since I don't feel like a survivor - I'm surviving - I haven't beaten this thing nor will I. What does that make me?? Thoughts to ponder.

My Mets Support Group

2010-04-04T12:47:00.004-07:00

I was thinking that I write a lot about Callanish and how they support me and others on this rocky cancer road but don't say a lot about the 'Women With Metastatic Cancer' support group that I attend at the Cancer Agency. I wrote the article below for the Canadian Breast Cancer Network last fall (don't know if it's published or not)- it actually started out as a presentation and then I morphed it into an article. It's a bit lengthy but couldn't figure out how to attach it as a link - if anyone knows please let me know. So sit back with a cuppa and read on....

2010-04-04T12:46:00.002-07:00

*The Club You Don’t Want To Join...Reflections on living with metastatic cancer***

Twice a month on Wednesday mornings, I make my way to a small but cozy room on the 5^th floor of the BC Cancer Agency to connect with a community of women like myself who form The Women’s Metastatic Cancer Support Group – a group we affectionately refer to ‘the club you don’t want to join’.

I’ve been a member of this ‘club’ for 4 ½ years now, along with others who have been members longer and others who were members for shorter periods of time. We are young, we are middle-aged and we are older, we are married and single, some of us have young children, teenagers, adult children or grandchildren and some no children at all. Sometimes we are well, sometimes sick, sometimes in treatment and sometimes not. But all of us live in a world where cancer is a chronic disease, which is another way of saying we live in the shadow of dying.

My first encounter with cancer was May 1992. A diagnosis of breast cancer led to a course of treatment including a lumpectomy, node dissection, chemo, radiation and tamoxifen. I patiently waited for the requisite 5-year mark to pass and then emotionally promoted myself from ‘cancer victim’ to ‘cancer survivor’. How wrong I was. Thirteen (13) years later, almost to the day, I was diagnosed with metastatic breast cancer to my liver and diaphragm with no option for surgical intervention. I was totally confused – nothing hurt, I’d been ‘rubber-stamped’ – I was a survivor, I didn’t look sick, I’d been cancer free for 13 years - what the hell were they talking about.

When I was re-diagnosed in 2005 my life turned upside down. AGAIN I had to tell my family… but this time I also had to tell them it was terminal… or incurable which is a softer term many prefer to use – it doesn’t really matter – they mean the same thing.

On re-diagnosis I pressed my oncologist for a time frame – everything seemed so imminent – how fast did I have to do the living I wanted to do. He told me 2-5 years while cautioning me about statistical averages. Since then I’ve learned statistics are just that and, in my opinion are of no real value – I’m doing much, much better than anybody expected and think if I’d paid too much attention to my ‘best before’ date my quality of life would not be near what it is. Doctors simply don’t know how each individual will respond to treatment and without a doubt giving an ‘expiry date’ is not in any anyone’s best interest. Since my re-diagnosis I’ve met many individuals who have outlived their statistical time frame – some by as much as 10 years. More and more people will continue to live longer with all the new treatments, drugs and trials being developed – a group of people who don’t fall into the conventional categories of either active illness or survivorship.

Living with cancer is a unique world - an ongoing dance between emotional challenges and physical limitations. Never a day goes by that I’m oblivious to the fact I have cancer – right from the moment I open my eyes in the morning, although I have to say some days it doesn’t occur to me for an hour or so and that I consider that a good day. It goes way beyond tests and treatments, medications and medical appointments, support groups and statistics. It’s in my head as much as in my body – perhaps even more so. It’s a life occupied alternately with fear, confusion, anger, anxiety, sadness, side effects and fatigue but it’s also filled with joy and laughter and fun, happiness, family and friends and love.

The first eighteen months after re-diagnosis I struggled – not so much physically – getting used to meds and side effects was way easier than getting used to the fact I was going to die from cancer. I put on my best game face for everyone in my world, I tried to protect them, I let them ignore the reality of my life, I didn’t show my grief, I didn’t worry them with details. I didn’t talk to them on my bad days because we no longer spoke the same language. I felt a huge responsibility to make things easier for everyone – to lessen the grief and the heartache.

But, as life always does, things settled down. The fear of treatment and the prospect of death didn’t seem quite so imminent and so my life returned to this new “normal”. This time of trying to live in the present and not in the future, to not worry about the next set of tests or to think about how my life will be in one year or two years or five years. To keep putting one foot in front of the other and to be grateful for the time I have and use it wisely.

Mind you, the brain doesn’t always cooperate – fears crop up, questions surface, anger appears and confidence wanes. Are the meds still working? Why is my stomach so upset – has it moved to my abdomen? Tests again – please let everything be stable. I hate having cancer. Is this the start of the end? Do I really want to know? Can I handle the pain that will come my way? Questions that have no answers right now.

And while all this is going thru my head, I’m busy doing the day-to-day things of life – I clean, I cook, I hang out with family & friends, I go to support groups, I go for walks, I shop, I laugh, I talk about insignificant and trivial matters and watch TV. On the surface my life appears in hand - if I look fine and do what I do then I must be healthy and the cancer must be in control. But controlling my cancer isn’t the only issue – how do I get control of my life? I live in two separate worlds – the cancer world and the non-cancer world.

To be able to sit in a room with other women who ‘get it’ is a lifeline during the really tough times as well as the okay times. The Women’s Metastatic Cancer Support Group I attend is a resilient group of women, a diverse group who love to laugh, shop, eat, drink wine, travel, play with our children, walk our dogs, write poetry, go to the theatre – a sisterhood of individuals whose paths, under ordinary circumstances, would likely never have crossed.

But together we are a force to be reckoned with!! We share a wealth of information in the art of living with cancer as an extreme sport. We share our frustrations and anger along with our good news and our bad. We compare notes on medications, doctors, managing side effects, upcoming trials and how best to manage our way through an often de-sensitized medical system. We encourage each other when we’re feeling anxious or dismissed, sad or confused, sick or scared or when we’re just down in the dumps. We speak the same language.

Our conversations cover a myriad of subjects, one being the frustration we feel with individuals – including those in the medical field - who just don’t get it. We know people don’t intend to be thoughtless or insensitive however there are just some questions and/or comments that bewilder us:

BUT YOU LOOK SO GOOD!

Ø There’s a common perception that people who have cancer look like they have cancer. Please be aware that looking good has nothing to do with it – you should see me on a bad day.

THE ‘HOW ARE YOU DOING?’ LOOK.

Ø It’s the frown in the middle of the forehead, the squinty eyes and the head tilted just ever so slightly look. Rarely do we find someone who really wants to know. Most people don’t want to talk about ‘IT’ – about cancer and death and dying – but it’s part of every metastatic patients world so be very, very careful if you’re going to ask with that kind of look on your face. And by the way, sometimes we’re just fine.

WELL – WE COULD ALL GET HIT BY A BUS TOMORROW

Ø Please don’t patronize me – I’ve already been hit by my bus and I pray you won’t ever get hit by this one. Don’t minimize my situation.

OH COME ON, YOU CAN DO IT!

Ø If I felt that I could I would. Sometimes the emotional toll of cancer incapacitates me as well as the physical – please understand it has nothing to do with you.

DON'T TALK LIKE THAT. YOU’LL BE FINE.

Ø There’s every likelihood that I won’t be fine – I’m in a very real situation. If I want or need to talk about what life will be like when my cancer progresses or after I die, DO NOT under any circumstances give me that fake, terrified, cheerful smile. Just tell me you’re not comfortable with the conversation – I understand.

WHEN YOU ASK ME HOW I’M DOING include my whole world.

Ø Please remember that I am much more than my disease. Remember that we really did have things we used to talk about BEFORE cancer. Those things are still important to me.

PLEASE DON'T EDIT ME.

Ø Yes I have a lot on my plate. But it’s not your job to withhold bad news from me. I’m an adult and I don't want to be left out of the loop. Don’t avoid subjects that you think might be too sensitive for me – let me make that decision – I need to know what’s going on – good, bad or indifferent my mind remains intact. I don’t need to be protected from life.

We talk about our losses - metastatic cancer diminishes women in many, many ways that others can’t comprehend. Certainly some of the losses are visible – our hair, our breasts, our beautiful skin, our basic body functions or our energy. But the losses go much deeper than that – unseen losses at the very core of who we are.

Ø We lose confidence in our bodies

Ø We lose our independence

Ø We lose our jobs

Ø We often lose our individual identities – from motherhood to business executive

Ø We lose feelings of sexuality and femininity

Ø Young women lose their fertility

Ø We lose our self-esteem

Ø We often lose our financial independence or security

Ø For some it is a loss of faith or a questioning of religious values

Ø We lose relationships or the hope of having one again or the energy to pursue one

Ø We can temporarily or permanently lose our memory

Ø We lose parts of our bodies that can’t be seen

We wonder who the woman in the mirror is. We know who we used to be but now we have to re-invent ourselves to live a life we never expected. We lose the ability to live life without fear. We know we will never be able to move past cancer so we have to work out how to live with it knowing that our lives can change in one short doctor’s appointment.

Our hearts break every day – for ourselves, our families, our friends and for each other. We listen to each other’s fears, hopes and dreams and sometimes we have to grieve the loss of our friends – and we do this together as well.

My group is not just about cancer – it’s about our lives. We’re not a therapy group – we’re a support group. We talk about the possible and the unthinkable. We come together to talk about our worlds without having to censor our thoughts or our tears, without having to sugar coat what we are thinking or feeling and we know that in our space we are understood and safe. We find great comfort in being together with no pressure to be anything other than just how and who you are.

I pay tribute to and hold tender everyone one that has ever walked through our door and has had to join this ‘club’ you should never have to join. I am forever grateful for all your thoughts, your courage, your generosity and compassion and your wisdom – without all of you I’d have much less insight and resolve as I travel my path.

Round 3 Complete..

2010-04-03T12:19:00.010-07:00

Well another round completed and I'm in pretty good shape. Another day or two would clearly have brought on the blistering again based on how my hands and feet are feeling and I'm definitly feeling the fatigue now - or is it just laziness?? - hard to tell!! Oncology appt next Wed and am waiting with bated breath for good news - that's 3 rounds now and am feeling optimistic. 'They' say its a week off but actually its a week of anxiety - now that I've writen that it seems like a silly statement - every week living with cancer is a week of anxiety.

I want to send a great big virtual hug and congratulations to my pal Colleen - she has just had her 150th treatment - yes 150 treatments over 10 years and remains clear and healthy! The grind of doing treatment like this for 10 years is heroic in my opinion. And people forget, assume you are well but imagine how much emotional energy is required to drive to the clinic every 3 weeks for 10 years, how much energy it takes to stay positive and how taxing it is on one's body to absorb so many chemicals. It wears you down - physically and emotionally. And in the meantime life happens - so Colleen you are my hero and I love you to bits and I'm with you every step of the way.

I missed a lot of Callanish events over the last couple of months but was finally able to get back to the writing workshop this last couple of weeks. We are an amazing group of people and Kirsten and Janie are such inspiring facilitators. I love the notion of writing into a prompt with a view to exploring the inner landscape of your life - it's amazing what comes out - or not!! But writing is good for the soul - as is any creative exercise I've discovered over the past few years. I'm currently waffling over whether or not to attend "The Painting Experience" workshop being held on Whidbey Island April 22-25. 3 1/2 days. "The goal is free expression, where the journey itself is the goal, not the technique." Which is a good thing because I have no technique!! I was hoping to attend with a friend but doesn't sound like that is going to work out so am contemplating going on my own. Pretty scary. But as I often ask myself what is the worst that can happen?? I could really really enjoy it OR it could be very uncomfortable and intense and so I can leave. But 3 1/2 days away from my sanctuary without my own pillow...... that's a stretch for me!

My heart is breaking for a family friend - Jason - who has recently been diagnosed and had a huge surgery last week. Another individual who is way too young to be in this club you don't want to join. I've had some updates tho and appears he is rallying back from his surgery really well - in fact as his wife says ' remove a couple of tubes and he thinks he's an athlete'. Well you gotta have attitude to battle with cancer so here's to you Jason - fight the good fight!!

Lots of little things going on in my life. Family, friends, renovations!! I will be so glad when this strata reno is done - people are unbelievable - now we have someone in the building vandalizing some of the work that's been done - what a coward - if you have something to say say it and don't hide. All things considered, the contractors are doing a terrific job and the common areas are starting to look fabulous - so people - a little vision and a little patience please!

Off to the couch for a nap - Happy Easter to all.

Rest easy Peter

2010-03-29T10:23:00.003-07:00

The end of March is peeking around the corner already. I'm almost thru my 3rd course of chemo and things have gone very very well considering the 2nd course. We'll see what next week's tests bring to light. I'm also thinking I should ask how many treatments I'm scheduled for!! Finally regaining my strength from that awful Feb/Mar chapter - I know that cause I feel like shopping again!

I love my family - have I ever mentioned that? Yesterday we finally had my family birthday party and it was fabulous - I'll take a day of I love you's, big hugs, great food, laughter, small children, adults who believe they're still children and gifts over just about anything. The gift theme was a Pandora bracelet - it's beautiful - full of cupcakes, flowers, hearts, purses, shoes, and my special angel - a circle of support and love on my wrist every day.

Rest easy Ian - on the wings of your eagle...

Where the heck have I been???

2010-03-14T16:16:00.006-07:00

Where did the time go - please don't ask me - I don't know
It's been a month of days - it's been up, down and all around

Not a month I want to repeat any time soon I can assure you. On reflection I don't know when I really started to get sick because I don't get sick doncha know. But when my friend Joyce pointed out that I couldn't breathe and took me to emergency I realized that she was right - I couldn't! Seriously I guess things had been going downhill for awhile. Halfway thru my second course of chemo my feet and hands started to blister but I didn't react right away thinking that it would calm down. Wrong again! I waited far too long to call the Dr. and was told to go off it right away. I'd had a couple of days when I couldn't walk any further than bed to couch to bathroom to couch and the tips of my fingers had become so sore and blistered that I couldn't even put earrings on - and anyone who knows me knows that that would not only ruin my day but my mood! In the meantime I had gone on antibiotics for a sinus infection about the same time I started the chemo so already wasn't in prime shape. The I got a cold which seemed to go directly to my chest which developed into bronchitis and thus the breathing problems. It's only now that I'm starting to feel better that I realize how sick I was/am. My GP put me on 'house arrest' last week for a week or 10 days - the only time I'm allowed to go out is to see her!!

In the meantime, I had an oncology appt last Tuesday and it was decided to put off my 3rd course of treatment for a week which means I will start again this coming Thursday and they have dropped the dosage to 3000 units per day from 4000 and so I'm hopeful I can manage that. Rest assured I won't wait if I experience ANY side-effects whatsoever. The best news of last week tho is that blood-work showed my tumour markers have dropped already - yahoooo.... hope it's a trend!

And so now I'm having to ponder the idea that perhaps I no longer have the resources to draw on that I used to have - that's a tough hurdle. It's not only because of the cancer - it's also age - I'm happy to say that my body turned 58 in February!! The mind - well we're simply not clear what age that it -it can go from a childlike 10 to a whiny 80 year-old in the course of a day!! How I ever got this old is beyond me - I now say things like 'they just don't know how fast time goes', 'if they only knew', and so on ad nauseam!

So now I'm back and will start pontificating, opining and updating again....

Rest easy Rita.
Rest easy Grampa John.

All you need is love..

2010-02-11T10:54:00.016-08:00

If I'd paid more attention in the 60's and 70's I probably would have been a flower child - is it too late to embrace that culture?? I don't think so although I likely have too many shoes, purses, clothes and other materialistic items for an absolutely perfect fit. And the drugs I take are most definitely not those of that era!!

In retrospect I travelled faster than the speed of light for many many years never stopping to consider too many things other than myself - is that the way of all young people? Social consciousness wasn't a phrase I was familiar with although I did have opinions that were based on very little knowledge of any given situation. My world was very small and contained and any opinion I voiced was not based on any kind of passion but the need to be accepted.

One of the great benefits of being in my 50's is that I accept me without apology. I've never been one for heated discussions nor the type to lock horns with others or rant and rave or get on a soap box (well most of the time!). Right or wrong is not an issue - I am right for me and you are right for you. My heart hurts for all the social injustices in the world, for all the tragedy, for all the hungry and cold and for those who have so little and like hundreds of other people I wish I could fix the world. I can't do that but every day I send a silent universal prayer for everyone to treat others with peace, love, understanding and compassion.

I think the Beatles said it best.....

Oh de coffee!

2010-02-08T08:45:00.018-08:00

I miss coffee. That lovely dark sweetly smooth panacea that makes the morning right. Yes - no - maybe so. Yes mornings are when i KNOW I can have one, maybe so mornings are the days I try and don't always succeed getting a cup down and the no mornings are.. well just plain sad.... but today is a yes day and let me tell you just how fine my coffee is!!

So I'm on Day 11 of 14 on the capecitabine and all is well so I'm feeling pretty optimistic. Some might understand the thought that if the chemo isn't making one sick you somehow feel like its not working. I have to remind myself how far treatments have come since 1992. I've been encouraged by some friends who are on the same treatment - my good buddy Jean has been on it for 4 out of 5 years and hasn't had much in the way of side-effects. 4 YEARS!!? I'll take that, hell I'll take 1/2 of that with minimal effects. I suspect that this 'chemo light' (as Jean refers to it!) is cumulative in terms of side effects as I'm starting to experience some tingling and skin reaction along with a few dizzy spells but nothing unmanageable. Although I did sleep most of the weekend - but I do like to sleep so maybe that's not related!!

My last week has been pretty quiet except for the odd reno committee meeting - oh the politics. I don't understand why some people are combative and disagreeable no matter what the topic - question: "Isn't it a lovely day?? answer: Well you might think it's lovely but the clouds are coming, mark my words, and then you'll wish you'd checked the weather forecast better." Oh the energy it must take to always be on the defensive and carry that large a dark cloud around. My answer - Yes - it's lovely right now and clouds come and go - today, tomorrow, next month -but they're not always black or gray and they don't always mean a storm is heading your way. Let your imagination wander when you look at clouds - I've seen some amazing pictures in those cumulonimbus beauties over the years!

My music rant - I finally got around to watching the Grammy Awards and now wonder when I got old. In the immortal words of our parents 'I remember when.....'. So, I remember when they actually gave out all the awards during airtime and let the winners have enough time to convey their gratitude. I remember when the awards were about the artists and not like a Broadway musical. Okay I admit we did have Elton John and the Divine Miss M. I remember when you could actually hear the words to the song. I remember when singers sang songs and didn't talk songs. I remember when dancers were meant to enhance the show not be the show, when singers didn't have to lip-sync so they could dance and I certainly don't remember the stars having to grab their crotch to make a statement. I remember when all categories of music were acknowledged on that particular night and I think it's a shame that music fans don't even get a small opportunity to discover other genres that embrace the world of music as a whole. The music of my generation seems to be timeless though and it was a treat to see Smokey, Quincy, Roberta, Carlos, Jeff, Elton and hear the music of Les Paul. I'm really not that old and I do luv my music - when I can hear it!

While I'm ranting let me say this about the Olympics. Colossal fiasco. I don't profess to have bored myself with all the detail but this I do know. It hurts (and has hurt) the regular joe, the small businessperson, the working public and the small communities of our province who have little or no expectation of compensation over the long term. Does the glory of hosting the Olympics outweigh the disruption and expense caused to the millions of people who live in BC that cannot or do not want to participate?? Not in my mind. I've heard some outrageous stories - one that really put me over the edge is a couple (RCMP) who had to send their children back east to her mother's for 2 weeks since they can't get any time off and thus look after their children - how can that be right? For what? Schools have been closed, roads have been closed, people who commute too many hours now have to add on more hours every day to be away from their children, their home, their parents and pay more tax for this benefit?? Then there are those who need the services of doctors or hospitals - be it urgently or regularly - in the city or outlying areas. Who thought of them? It's hard enough to be ill without having to worry about being late to dialysis or chemo or any number of life-saving treatments. Plan for emergencies?? How does one do that? An ambulance caught in traffic? Buses be re-routed or cancelled? No driving and no parking on main roads that are NOT in the downtown core - what's with that?? Oh and then there's the parking lots who have doubled - yes doubled - their parking rates over the last two weeks? Some people can't even afford to be sick (which is a very sad statement in such a wealthy province - but that's another blog) - never mind having to pay twice as much on parking to find out what's wrong with them. Yes - it's all bad and wrong from my point of view.

What else? Not too much. I've been nesting and puttering and reading and napping and catching up on Masterpiece Theatre - the latest one being 'Miss Austen Regrets'. Had some sweet time with Shirl. Got my beautiful new dining room suite delivered and with the vision of my pal Deb rearranged some furniture for a new look - thanks Deb! The purpose of the new dining room table is not what you might think - I don't really plan on cooking and eating - I plan on taking out my paints and paper and pencils and play 'Art' - yup it's probably the most expensive art table you'll ever see!

Okay so maybe I'm a little cranky today!!

Sweet Surrender

2010-01-31T10:09:00.010-08:00

I was thinking back to my drama moment last Thursday when I started my first dose of the chemo pills. I looked at them and looked at them for 1 1/2 hours and just couldn't swallow them. It wasn't the actual pills that were the problem it was the significance of the action. It was a no turning back point. It was jumping off a cliff. It was dark and angry moment. And it was scary - because, as many of us know, what is necessary to keep this disease at bay brings with it physical limitations that take us one step further away from life as we know it. Sometimes temporary but you're never the same, it would be unrealistic to think that a body wouldn't have long-term effects from absorbing the toxic substance of chemo drugs.

I want my old life back.

And then finally.... acceptance and instead of a cliff I took a jump off the side of a boat into the clear calm warm and eternally blue water in the Mediterranean. Because at the end of the day, there's really not an option.

What the !&^*

2010-01-30T10:14:00.005-08:00

Let me start by saying it hasn't been my best week. Busy but not the best. Wednesday's appointment turned out to be a very big disappointment. And so a new plan is now in place. Seems my tumour markers are up again and tamoxifen didn't seem to be doing the job so my oncologist has recommended a course of chemotherapy. Oral chemo yes but still chemo - chemo's chemo right? Shit. I like his attitude tho - let's get a handle on this now - I know I'm in good hands. The plan is to do this for 4-6 months and then hopefully go back on a hormone treatment. Time will tell. I've spent the last few days thinking "How did these changes happen so quickly - wasn't I paying attention?" but in fact it hasn't been that fast and I've always known that 'things' would change one day and now one day is here. So one step in front of the other ....

I've been told that I always have to have a project on the go and it's true!! This last year my project has been the with renovation committee of the strata. It's been a lot of work along with some frustration at trying to please 68 owners but I'm happy to say that the agreement with the contractor is signed and reno's will start March 1st. Personally I don't think a face-lift every 18 years is unwarranted - although not everyone agrees!! Out with the pink and green - in with a fresh and bright and crisp and unworn contemporary look!!

My friend Shirl arrived last night Palm Desert for a week and I am so very happy to see her - she couldn't have picked a better week to come home (she's a snowbird!). I have to admit I'm not the reason but I take what I can get. Her daughter will give birth on Monday to a new addition - and what's very exciting is that we don't know if it's a boy or girl yet - how often does that happen anymore. So I'll share her this week with her family and get to hold a new little baby as a bonus.

So looking forward to next week's 1/2 day writing retreat at Callanish surrounded by a community of amazing people including my sweet sister-friend Kirsten who initiated this series 2-years and 3-volumes ago. March will be the start of Callanish Writes IV series - another 8-week workshop for the brave! Writing is so good for what ails you...

Dear Friends

2010-01-20T17:56:00.012-08:00

Today I learned of another friend's passing over this last weekend. How this type of news wears on me is beyond description but let me try. The sadness sits with me still and yet again for all the friends I have lost the past few years, and there has been far too many. But coupled with the sadness of losing those precious friends is the certainty that the time we spent together enriched both/all of our lives and I wouldn't trade that for anything. Balancing the dark and the light of life is sometimes more of a challenge than others.

This past weekend I had the privilege of sitting in a circle with a number of other writers from our Callanish Writes workshop in an extraordinary experience. We are such a brave group of people - you know who you are!! We came together for an afternoon with family and friends to read our poetry 'in public' for the first time. A very tender and amazing experience. I'm thinkin' we should take it on the road!! Maybe call it the 'Callanish Monologues' - it perhaps wouldn't be as funny as that 'other' monologue play from awhile back. Hmmmmmm....wonder what kind of crowd we'd attract??

I've treated myself very well the last week - a day retreat, a sleep-in pj day, Voices of Callanish, relaxation and meditation. Oh yes it's all about me! And I plan to keep it up.

I'm in hold mode right now waiting on tests results which I'll get next Wednesday. My feeling is that things are a little precarious right now what with the progression diagnosis, the changes in meds which of course seems to come complete with new side-effects - some of which I'm not sure are related to the meds at this point -and the question of whether or not the Tamoxifen is having any effect. I'll see my GP tomorrow and try to get to the bottom of a few things.

Rest easy Karen.

Various Veins

2010-01-14T19:22:00.009-08:00

Yesterday I left Casa del Cancer giggling and chuckling over the antics of the day - not what normally happens on test day. You see I have no veins. Well of course I really do, they're just so deep and uncooperative that I'm sure the techs toss a coin to see who gets to poke me first. I'm ecstatic to report that yesterday was a one-poke day in both departments! Labwork first - no chairs available so I laid on a cot - maybe that helped, who knows - but one poke and it was done!! After gushing my gratitude to the tech she offered to be my own personal bleeder - complete with leeches if I so desired!! I did pass on that but we had quite the cartoon going on. Then off to my scan and - one poke and it was done. While they were setting up, being my helpful self, I started to raise my arms when the tech threatened me!! Oh yes she did - she told me that if that damn needle came out I could re-insert it myself!! Well as you can imagine that turned into a comedy routine as well. Yup - they know me in that department.

On another vein, I had the most lovely weekend in Victoria with my sister - such a treat for us to get some 1-on-1 time. Not that it was all 1-on-1 but what we had was great. It my niece's birthday so we shopped and ate and shopped and ate and slept and laughed. I love Victoria and all it's trees and buildings - even in the rain.

And on another vein, I bought a new laptop with Windows 7 and am wondering if I'll ever get this sorted out. I'm so not technical and my frustration level has been rapidly rising. Still have to get my old laptop 'de-virused' before I can access some documents but I just want to play with my new toy.

Tomorrow is my treat day - a day retreat at Callanish. I am so very ready for that -the last couple of months have been difficult and sad for so very many reasons and to sit with the Callanish community is the best medication I can get.

Positive Thinking .... or Realism

2010-01-07T18:39:00.007-08:00

At the Mets Support Group yesterday we had a discussion on the power of positive thinking, a concept that has been around certainly since I was young and naive. Which led me to thinking about how I think... and it's complicated. I don't believe anyone has just 'one' way of thinking, life happens and it's just simply not all good. What I do believe though is that - for me - positive thinking is my base for how I handle and react to my life. Call me Pollyanna if you will but right after you call me that you must also call me a realist. I like to think that for most part people are good and generous and kind, that you get what you give and that it's way easier to be kind and happy than sad or angry or mean.

So given my latest test results, I'm getting back on track to 'positive' - and no, not that "It's so wonderful that the results weren't THAT bad" kind of positive. It's more of a "Well things are changing but I'm still in pretty good shape for the shape I'm in" kind of positive. But I'm also a realist - I know my road is going to get bumpy and this is a new and unwanted phase. Just to clarify I am in no way 'giving up' - so not my style - but I also don't have my head in the sand.

I hate cancer, I hate everything it does, not only to the individual but to the families and friends who love and support and walk alongside those of us who deal with this disease. I hate that people suffer and die. I hate that children are left without a parent, that people lose their partners, that families lose their sons, daughters, brothers, sisters, mothers, father, aunts, uncles, nieces, nephews, cousins or grandparent - I hate it all. But I have to live with this disease and while it might take over my body - it will never, ever take over my mind or my spirit.

I have lost so many friends over these past 4 years and it's hard. What sits in my heart is just profound sadness that this is happening - to me, to so many of my friends and to so many people I don't know.

Rest easy Zoe.

Midnite Cancer Part II

2010-01-06T04:56:00.000-08:00

Well obviously I have a lot to learn here - like how to open the edit window. But all in good time.

I've been in this 'Midnight Cancer' (thank you Mary Bradish O'Connor) phase now for a couple of weeks. Since my last oncology appt matter of fact. Which I went to alone. Like a silly person. I knew something was up at my October appointment and in retrospect should have asked Irene to come with me. She is the other part of my brain - my sister, my best friend, my confidant, my rock and certainly would have had better retention that I did. But I asked the hard questions last week and now have a better grip on my new reality. Progression. Please say it isn't so. There's still different drugs to try but the term chemotherapy did come up. I did that back in 1992 thank you very much - I'll pass on that as long as I can. Trying to stay connected to now and not imagining my future is hard right now - but I'll get back on track. That's how I am and what I do - I'm just no good in the unknown - I'm more of a black and white girl.

Midnite Cancer

2010-01-06T04:26:00.000-08:00

Why 4 in the morning seems like a good time to start a blog is beyond me. But rather than exercising by throwing the covers off and then on - again and again and again - and trying to settle my mind I decided to throw caution to the wind and actually do it. Not much else going on at this particular time of day.

And why four years, 7 months and 21 days post-diagnosis seems to be a time to start blogging is also a mystery. But the times they are a'changing.