Merry Christmas to my world!

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...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Such a cutie-pie!

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

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

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

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

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

And a candle for Mona..



Stay well my friends.

Catching Up - the health stuff

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

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

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

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

Stay well my friends.

An Open Letter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rest easy Marilyn.

It's ugly out there

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

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

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

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

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

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

Stay well my friends.

Rest easy Cheryle

Since the retreat...

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

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

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

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

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

Stay well my friends.

Getting to know you....

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

Rest easy Candy.
Rest easy Rachel.

Snap... Part 2

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

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

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

Stay well my friends

Rest easy Wayne.

Snap

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

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!

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

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

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

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..

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...