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?
Sunday, May 30, 2010
Saturday, May 15, 2010
Happy Anniversary!!
I want to wish myself a very happy 5th anniversary!!! Monday, May 16th, 2005, 9:30am was the day I heard my re-diagnosis. Sunday, May 16th, 2010 will be 5 years of living relatively well with this disease. Never did I think 5 years ago that I would still be as well physically, as healthy emotionally or as content as I am 5 years later - in fact I didn't think I would still be alive - but alive I am!
I wrote this reflective piece in 2008:
"Die-Agnosis":
The day was almost ordinary except the phone rang very early… and I knew but wouldn’t say it out loud. Put on your cheerful face I said, be strong. But I know Sharon doesn’t work Mondays, why else would she call me into her office.
Get there ASAP – get it over with. Shower, hair, makeup, trendy little outfit – maybe if I pretend it isn’t so it won’t be so.
Sharon looks sad and compassionate, apologizing like it’s her fault somehow.
Say it isn’t so. It can’t be true. I don’t want to die. I want to see my kids grow up. I’m not done. I’m scared. Tears, tears, tears, my legs give way, Sharon holds me and comforts me.
Metastasis means death – this much I know. But now so much I don’t know. How can I tell my family AGAIN? Please say it isn’t so. I’m exhausted already.
Not an ordinary day after all – life as I knew it changed in a one-minute phone call.
Devastation is all around.
All I can think about it growing old – and this time wanting to.
Since I seem to be all about words this week celebrate comes to mind. Definition of celebrate: To observe a day or commemorate an event with ceremonies or festivities.
Those of us who live with cancer celebrate many things that might seem odd to others - we celebrate birthdays for sure but we celebrate 1-2-3-4-5-10 week, month. year anniversaries of anything pre and post, we celebrate new hair, ports removed, canes being discarded, getting thru the day without a nap, remissions - pretty much everything is worth celebrating.
I am celebrating 5 years I never thought I'd have....
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....
Friday, May 14, 2010
The Power of Words
Over the past 3 years I have sat in many writing circles, committing my thoughts to paper, serious business this writing thing. Spoken words must be carefully chosen - what is said out loud may stay in the heart or mind of a person forever be it love, tenderness, anger, sarcasm, criticism - words can stick. Written words are different - you can cross them out, erase them, re-work them, you can write a journal, a memoir, a poem, some prose, the book of the century or simply preserve the thoughts in your mind. Callanish Writes IV is now published - an extraordinary collection of reflective words by remarkable people. Based on our desire the express ourselves on a deeper level and a willingness to explore our hearts. Thank you for sharing your words with me.
Still on the subject of powerful words consider these phrases that appeared in my latest CT scan report:
- ‘has decreased in size from 3.8 x 2.4 to 2.7 x 1.7’
- ‘these changes are stable’ – "stable" appears in many areas of this report!!
- ‘the remainder of the solid organs remain unremarkable’ (new favourite word!!)
- ‘the lung bases remain clear’
And my favourite phrase re the bones mets:
- imaging features are most suggestive of interval healing of bony metastases’
Healing?? Never thought I’d see that word in any of my medical reports!!
Needless to say I am doing the happy dance again!! Despite the fact that I haven't yet completed a full cycle of the chemo and have yet to get the side-effects manageable - it's working!! Impression: Positive interval treatment response. (from radiology report) Yahoooooo.... and way to go Mar!!
I'm off to Brew Creek tomorrow for a week-long retreat with Callanish - so ready for that! Life is good and I'm still on a high (unmedicated!) from my good news this week.
Stay well my friends - back on the 22nd.
Saturday, May 8, 2010
The Universe Says Yes To Me
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
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
Sunday, May 2, 2010
My Day of the Week
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.
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.
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