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.
Thursday, October 6, 2011
Wednesday, October 5, 2011
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...
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.
Sunday, October 2, 2011
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
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
Friday, September 23, 2011
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.
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.
Sunday, September 18, 2011
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
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
Wednesday, August 31, 2011
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!
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.
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.
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