A friend of mine told me the story of a wonderful young woman named Vanessa who was diagnosed with Stage IV cancer in her late 20s. She is in hospice now, yet she has a project going called, "Live Sincerely."
She asks you to take the Live Sincerely pledge, which is this:
I will live sincerely.
I will learn from each person and each day on my journey
and will share ideas and wisdom from my own experiences.
With a grateful spirit, I will acknowledge my need for others and will in turn be loving and generous,
remembering that every member of a community plays a unique role.
I will remain strong in my convictions
while keeping an open mind to perspectives beyond myself.
Courageously, I will respect each movement of my heart,
through fear and joy, grief and peace.
I will cultivate my passions with delight
and also take time for honest introspection.
I will love the person I am today
while constantly striving towards my best self.
I will keep a healthy balance between the rewards of discipline and the growth and wonder that spontaneity brings.
I will acknowledge both the marvel and the limitations of my body and respectfully take care of it the best I can.
Accepting the reality that there are circumstances I cannot change, I will seize my power to actively change that which I can control with hope and creativity.
I commit to living each chapter of my story:
honoring the lessons and gifts of my past,
fully participating in the fleeting beauty of the present,
and bravely walking towards the unknowns of my future.
Knowing that life is an enduring but glorious struggle,
I pledge to live each day with purpose.
I will live sincerely.
Wise words from somebody so young.
I was given the opportunity to see a private video of a remarkable man who has only months to live, also a young person. Knowing your life is short makes you think deeply and acknowledge your mortality in a vivid way. It forces you put things into perspective, makes you want to cut out the noise to get to the song - and you become wise beyond your years.
It always makes me sad to know a young person's life will be cut short; it seems particularly unfair. Of course, none of us want to die before our time, before we raised our children and grandchildren, loved and lost, have grown old. Those of us who are living with a terminal illness know clearly that life holds no promises and all we can do is live sincerely in the short time we have left. Somehow, it becomes important for those of us who know our time is short to let people know what truly matters. Our perspective changes, and we can see what they can't. The petty concerns that take up most of our days - they are of our own making. If we can't have long, meaningful lives, we want others to do so.
Vanessa is sharing the gift of her insight - insight that those close to death often have. And, that is quite a gift.
Here is a news story done about Vanessa recently:
FOX19.com-Cincinnati News, Weather
As you can see, she and her family are remarkable people.
The Taffy Box is doing a line of "Live Sincerely"jewelry with the permission of Vanessa. 100% of the proceeds go to the Scar Project, for which Vanessa posed and which meant a lot to her.
So, read Vanessa's story, take the pledge, do the assignment. Buy the jewelry to remind yourself what life is about and that living fully and authentically is a one-shot deal.
My heart goes out to Vanessa and her family. I hope they can find comfort in knowing that she has touched and changed lives. People will carry her words and will Live Sincerely because of her.
Thank you Vanessa.
Blogging my life with breast cancer, from suspicion to diagnosis to treatment. Now livin' the Stage IV Lifestyle! Terminal Cancer can be funny. Just not for very long.
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Tuesday, August 21, 2012
Monday, August 20, 2012
Thursday, August 16, 2012
Tuesday, August 14, 2012
What kind of timing is this?
I started Abraxane in March of this year; my fifth chemo.
Most metastatic patients lose their hair over and over. This is because some chemos cause hair loss and some don't. Your doctor puts you on one that doesn't, your hair grows back and you don't look sick. That chemo eventually fails and he tries a new one that does cause hair loss. And, that's when people think of you as sick - when you are bald. That's when the questions start, and the pity. People are very visual.
For you, out come the scarves, the wigs, the hats.
I know many people who have lost their hair more than four times.
Abraxane causes hair loss in 96% of people so when I started it, I dusted off the scarves and got a new wig. I was ready for my second hair loss. I'd prepared mentally. I was leaving my job, I was going to be home, so who really cares? I could wear a wig for special occasions and be bald at home. There wouldn't be that many stares, that many questions this time as I wouldn't be so public.
And, indeed, my hair began falling out. But slowly. A few hairs at a time. Not in huge clumps like the last time. I'd run my hand through my hair and get one or two hairs each time, not fifty. I was pleased.
As time went by, it got thin enough for me to do some strategic covering. I wore headbands to cover up the balding areas and pull my hair around it so it looked thick in other places. Then my stylist cut it so that you couldn't even tell it was thin. She said she's seen people without cancer who just naturally have hair that thin - because mine is so naturally thick it's new thinness looked odd to me.
I've been wig-less and scarf-less ever since.
After a couple of months on the drug, my hair stopped falling out entirely. I was astonished. I would be one of the 4% who gets to keep their hair on Abraxane.
At least one tiny thing went right.
I did lose my lashes and my eyebrows. The brows are easy to draw in, the lashes - well, I've never mastered false eyelashes. I've worn them to a few parties and they usually end up on my cheeks before the night is over. It also doesn't help that this chemo makes your eyes and nose run. So, I try some waterproof liner or mostly, just leave it alone. If you stood next to me in the grocery story, you would not think, "that lady has cancer."
And, now, I get to take a chemo break. My last chemo was July 25th, and I won't start it up until my next scan in October. Suddenly not tied to weekly doctor's appointments, our family is taking a very small vacation, to Arizona. We were going to pretend cancer is not in our lives, that all was normal, that we were a normal family doing normal things.
Before you tell me, I know it's hot there. It's hot where we are too. It was 111 yesterday, so we are used to it. I like Arizona - my husband and I went there on our tenth anniversary, and I want my son to see it too. Saguaro cacti, red rock formations - it's so beautiful. It was where my husband and I had planned to retire, back when we made plans like that.
Anyway, we are staying in a resort with lots of pools and waterfalls and even a swim-up restaurant. A place a 15 year old will like, and a place mom can rest too, and a place where we don't have to think about this disease that has taken over our lives.
Two days ago, and almost three weeks after my last chemo, my hair has started coming out. This time, it's for real. In big clumps. Hair is everywhere and if I touch my hair, if I wash it, I have in the palm and in my fingers, not four hairs, but fifty.
Hair is all over my keyboard, all over my bathroom floor, all over my couch and pillow. It will be gone in days.
That means, I'll be bald for my trip to Arizona. And, the weather is forecast to be in the hundreds, which is way too hot for a wig, which are not for swimming anyway.
This was supposed to be our "no cancer" vacation, and now I'll be obviously sick to all who see me, or miserably hot if I want to conceal.
I kept my hair for four months on Abraxane, and it falls out after I stop the drug. I'm on a chemo break, yet out come the scarves and the hats.
Life, somehow, is playing a crazy joke on me.
But right now, I'm not laughing.
Anne Wentworth, you won the book in the contest I had recently. Please email me at butdoctorihatepink At gmail DOT com so that I can get your address. If you don't contact me within one month of the contest end, I will have to pull a new winner. Thank you!
Most metastatic patients lose their hair over and over. This is because some chemos cause hair loss and some don't. Your doctor puts you on one that doesn't, your hair grows back and you don't look sick. That chemo eventually fails and he tries a new one that does cause hair loss. And, that's when people think of you as sick - when you are bald. That's when the questions start, and the pity. People are very visual.
For you, out come the scarves, the wigs, the hats.
I know many people who have lost their hair more than four times.
Abraxane causes hair loss in 96% of people so when I started it, I dusted off the scarves and got a new wig. I was ready for my second hair loss. I'd prepared mentally. I was leaving my job, I was going to be home, so who really cares? I could wear a wig for special occasions and be bald at home. There wouldn't be that many stares, that many questions this time as I wouldn't be so public.
And, indeed, my hair began falling out. But slowly. A few hairs at a time. Not in huge clumps like the last time. I'd run my hand through my hair and get one or two hairs each time, not fifty. I was pleased.
As time went by, it got thin enough for me to do some strategic covering. I wore headbands to cover up the balding areas and pull my hair around it so it looked thick in other places. Then my stylist cut it so that you couldn't even tell it was thin. She said she's seen people without cancer who just naturally have hair that thin - because mine is so naturally thick it's new thinness looked odd to me.
I've been wig-less and scarf-less ever since.
After a couple of months on the drug, my hair stopped falling out entirely. I was astonished. I would be one of the 4% who gets to keep their hair on Abraxane.
At least one tiny thing went right.
I did lose my lashes and my eyebrows. The brows are easy to draw in, the lashes - well, I've never mastered false eyelashes. I've worn them to a few parties and they usually end up on my cheeks before the night is over. It also doesn't help that this chemo makes your eyes and nose run. So, I try some waterproof liner or mostly, just leave it alone. If you stood next to me in the grocery story, you would not think, "that lady has cancer."
And, now, I get to take a chemo break. My last chemo was July 25th, and I won't start it up until my next scan in October. Suddenly not tied to weekly doctor's appointments, our family is taking a very small vacation, to Arizona. We were going to pretend cancer is not in our lives, that all was normal, that we were a normal family doing normal things.
Before you tell me, I know it's hot there. It's hot where we are too. It was 111 yesterday, so we are used to it. I like Arizona - my husband and I went there on our tenth anniversary, and I want my son to see it too. Saguaro cacti, red rock formations - it's so beautiful. It was where my husband and I had planned to retire, back when we made plans like that.
Anyway, we are staying in a resort with lots of pools and waterfalls and even a swim-up restaurant. A place a 15 year old will like, and a place mom can rest too, and a place where we don't have to think about this disease that has taken over our lives.
Two days ago, and almost three weeks after my last chemo, my hair has started coming out. This time, it's for real. In big clumps. Hair is everywhere and if I touch my hair, if I wash it, I have in the palm and in my fingers, not four hairs, but fifty.
Hair is all over my keyboard, all over my bathroom floor, all over my couch and pillow. It will be gone in days.
That means, I'll be bald for my trip to Arizona. And, the weather is forecast to be in the hundreds, which is way too hot for a wig, which are not for swimming anyway.
This was supposed to be our "no cancer" vacation, and now I'll be obviously sick to all who see me, or miserably hot if I want to conceal.
I kept my hair for four months on Abraxane, and it falls out after I stop the drug. I'm on a chemo break, yet out come the scarves and the hats.
Life, somehow, is playing a crazy joke on me.
But right now, I'm not laughing.
Anne Wentworth, you won the book in the contest I had recently. Please email me at butdoctorihatepink At gmail DOT com so that I can get your address. If you don't contact me within one month of the contest end, I will have to pull a new winner. Thank you!
Saturday, August 11, 2012
Thundershirt
My stepdaughter got married recently. It was a lovely wedding, outside in the woods. It was touching and meaningful and made me happy to be around to see it. It is her story and I didn't write it, but it was a highlight in my life.
Before the wedding, I went shopping and looked at some dresses. I tried one on I liked at Ann Taylor, I think it was. Maybe Banana Republic. I didn't buy it because it didn't look good on me. I did some searching online when I got home, and saw the same dress. For fun, I clicked on it to see what it was supposed to look like. On the model, it looked like a flowy watercolor silk, perfect for a wedding. On me, it looked like a stiff tent that a four year old had colored on, with my two skinny legs sticking out from the bottom like tent poles.
(I hadn't realized at that moment that with the weight loss I'd experienced up to then that everything would give me that tent pole look - guess you have to see yourself in photos to believe it.)
Anyway, I started seeing that dress everywhere. Every page I went to online, there it was. It was even on my own blog. It followed me around like a duckling that had imprinted on me. Every advertisement was not only for Ann Taylor, but for that particular dress.
It was trying to trick me into buying it. I didn't give in. If it didn't look good on me once, it wasn't going to just because I now saw it on Fark.
Of course, I know how clever these advertisers are so I wasn't surprised. This has happened before. I'd clicked on a copier that I was researching buying for work, and suddenly all my webpages were filled with ugly grey copiers. And, I wasn't even at work! At least a dress is more interesting than a copier, even the same dress, over and over. Although honestly, you'd think they could have at least come up with matching shoes or something. Zappos should get on that. Who knows, maybe I'd have changed my mind.
Now, something sneaky is happening. Something I can't explain.
As you know, I have a simple dog. A dog afraid of the ceiling, who spent her life in a corner of my bedroom where it was safe, who only tremulously came out to eat; one in whom it was a great act of courage to walk on the floors. Her poor little life had been confined to about 3 square foot, and she was destined to live out her days in that small space unless I did something to help her.
One day I went to Petsmart and I saw a Thundershirt.
Now, I had seen the advertisements for this product in magazines before - in fact, a friend who knew about my nervous dog brought me an ad from a flight magazine to show me, and we both laughed. I knew wearing a shirt, even one a little too tight, would not help a dog overcome her fears. (It did wonders for me in my 20s, however).
Unfortunately, my dog got spookier and spookier and we were at the point where we had to carry her to her food dish.
I had been left with no choice - I had decided to buy her a sentinel dog, one who could tell her what was safe and what to really be afraid of. We figured another dog who ran across the floor would teach her that the floor won't swallow her; a dog who ran to eat dinner would get her competitive spirits flowing again and make her want to eat first; and a dog who slept in the comfy bed in the living room while we watched TV would prove that she didn't have to be afraid of alien attack and might also make her want to sleep in that comfy bed. The sentinel dog would alert the other dog about real dangers - for example, the mailman, or the sound of my son's car.
We were going to be a two dog household again. And this dog, this sentinel dog, had to be a puppy, so that she would not frighten the spooky dog.
In preparing for the sentinel dog, I went to Petsmart. We needed new bedding, puppy food, a hundred zillion toys, puppy classes, and a pretty collar. And, in one of the aisles, that's where it was, the Thundershirt - in person.
I stood there, in spending mode, and held the Thundershirt in my hand, and pondered. "Could this work?" My dog wasn't only afraid of thunder, she was afraid of the sky. She wasn't only afraid of loud noises, she was afraid of the air. She was afraid of being a dog, and if I bought that shirt, she might possibly become afraid of the shirt. But, what if it worked? What if I put this Thundershirt on her and she magically became a happy, healthy, normal dog again?
But, I was already committed to getting the sentinal dog, in fact, she was arriving the next day. So I reluctantly put the Thundershirt down. I figured it was $40.00 saved and if the new puppy didn't work to calm her, then I would always be able to buy one.
I'm glad to say, my sentinal dog idea worked like a charm. Cherry, my generalized anxiety dog, is back to being a happy-go-lucky pet who can sleep in any room of the house (that Trista is in) without fear, and Trista, our sentinal pup, is joyfully teething on my coffee table as expected.
That, my friends, is not the end of the story, for now I see Thundershirt ads everywhere. My dog has given up her fears, but the Thundershirt Company? Oh no, they STILL want me to buy a shirt. I see the ad announcing "Best product for dog anxiety!" on my blog, on my facebook page, on all the websearches I do. Eerily, this happens without my ever having done a google search for the product, or clicking on an ad for a Thundershirt. This happened because I merely touched one, in the Petsmart.
Is Thundershirt stalking me? How? Do they have cameras in Petsmart? You pick up a Thundershirt and a device immediately captures the IPs of our phones as we stand there, and begin sending targeted ads? Is that how it works? Is it because I put the word "dog" and "fear" in a blog post? Are they that sophisticated now?
Creepy. No wonder Cherry hid.
Maybe it's some weird form of cross-marketing. After all, most of my websearches have to do with medical anomolies such as dwarves or conjoined twins, most of the rest have to do with cancer and one or two are to find out what Josh Holloway is up to these days. Based on those searches, I began to wonder, is this something that would be good for a cancer patient? We all are intimately familiar with off-label uses for medication - perhaps this Thundershirt could be used off-label in some way too. I mean, if it's good for a dog it has to be good for a human as well, am I right? Lots of woman are afraid of chemo - would putting on this shirt soothe those fears? What about post-mastectomy - they wrap us up pretty tight. Could this be a substitute, maybe help prevent seromas?
Me? I'm not afraid of thunder, but I am afraid of spiders. Could this Thundershirt help me with that? Could I put on the Thundershirt before I go clean my baseboards?
(Y'all, I was just kidding! You know me, I don't clean the baseboards, don't worry!)
Do you know they have thundershirts for cats now? Would you try to put one of those things on your cat? I know I wouldn't try it with mine, unless I wanted shredded arms and a few days in the hospital trying to control infections.
Even the cat in their own ad doesn't look very happy about this situation. I hope that cat doesn't start following me around the Internet.
The main question is: why don't ads with Josh Holloway follow me around the internet? Why is it pet products and copy machines and never super handsome men? And, what IS he up to these days?
Before the wedding, I went shopping and looked at some dresses. I tried one on I liked at Ann Taylor, I think it was. Maybe Banana Republic. I didn't buy it because it didn't look good on me. I did some searching online when I got home, and saw the same dress. For fun, I clicked on it to see what it was supposed to look like. On the model, it looked like a flowy watercolor silk, perfect for a wedding. On me, it looked like a stiff tent that a four year old had colored on, with my two skinny legs sticking out from the bottom like tent poles.
(I hadn't realized at that moment that with the weight loss I'd experienced up to then that everything would give me that tent pole look - guess you have to see yourself in photos to believe it.)
Anyway, I started seeing that dress everywhere. Every page I went to online, there it was. It was even on my own blog. It followed me around like a duckling that had imprinted on me. Every advertisement was not only for Ann Taylor, but for that particular dress.
It was trying to trick me into buying it. I didn't give in. If it didn't look good on me once, it wasn't going to just because I now saw it on Fark.
Of course, I know how clever these advertisers are so I wasn't surprised. This has happened before. I'd clicked on a copier that I was researching buying for work, and suddenly all my webpages were filled with ugly grey copiers. And, I wasn't even at work! At least a dress is more interesting than a copier, even the same dress, over and over. Although honestly, you'd think they could have at least come up with matching shoes or something. Zappos should get on that. Who knows, maybe I'd have changed my mind.
Now, something sneaky is happening. Something I can't explain.
As you know, I have a simple dog. A dog afraid of the ceiling, who spent her life in a corner of my bedroom where it was safe, who only tremulously came out to eat; one in whom it was a great act of courage to walk on the floors. Her poor little life had been confined to about 3 square foot, and she was destined to live out her days in that small space unless I did something to help her.
One day I went to Petsmart and I saw a Thundershirt.
Now, I had seen the advertisements for this product in magazines before - in fact, a friend who knew about my nervous dog brought me an ad from a flight magazine to show me, and we both laughed. I knew wearing a shirt, even one a little too tight, would not help a dog overcome her fears. (It did wonders for me in my 20s, however).
Unfortunately, my dog got spookier and spookier and we were at the point where we had to carry her to her food dish.
I had been left with no choice - I had decided to buy her a sentinel dog, one who could tell her what was safe and what to really be afraid of. We figured another dog who ran across the floor would teach her that the floor won't swallow her; a dog who ran to eat dinner would get her competitive spirits flowing again and make her want to eat first; and a dog who slept in the comfy bed in the living room while we watched TV would prove that she didn't have to be afraid of alien attack and might also make her want to sleep in that comfy bed. The sentinel dog would alert the other dog about real dangers - for example, the mailman, or the sound of my son's car.
We were going to be a two dog household again. And this dog, this sentinel dog, had to be a puppy, so that she would not frighten the spooky dog.
In preparing for the sentinel dog, I went to Petsmart. We needed new bedding, puppy food, a hundred zillion toys, puppy classes, and a pretty collar. And, in one of the aisles, that's where it was, the Thundershirt - in person.
I stood there, in spending mode, and held the Thundershirt in my hand, and pondered. "Could this work?" My dog wasn't only afraid of thunder, she was afraid of the sky. She wasn't only afraid of loud noises, she was afraid of the air. She was afraid of being a dog, and if I bought that shirt, she might possibly become afraid of the shirt. But, what if it worked? What if I put this Thundershirt on her and she magically became a happy, healthy, normal dog again?
But, I was already committed to getting the sentinal dog, in fact, she was arriving the next day. So I reluctantly put the Thundershirt down. I figured it was $40.00 saved and if the new puppy didn't work to calm her, then I would always be able to buy one.
I'm glad to say, my sentinal dog idea worked like a charm. Cherry, my generalized anxiety dog, is back to being a happy-go-lucky pet who can sleep in any room of the house (that Trista is in) without fear, and Trista, our sentinal pup, is joyfully teething on my coffee table as expected.
That, my friends, is not the end of the story, for now I see Thundershirt ads everywhere. My dog has given up her fears, but the Thundershirt Company? Oh no, they STILL want me to buy a shirt. I see the ad announcing "Best product for dog anxiety!" on my blog, on my facebook page, on all the websearches I do. Eerily, this happens without my ever having done a google search for the product, or clicking on an ad for a Thundershirt. This happened because I merely touched one, in the Petsmart.
Is Thundershirt stalking me? How? Do they have cameras in Petsmart? You pick up a Thundershirt and a device immediately captures the IPs of our phones as we stand there, and begin sending targeted ads? Is that how it works? Is it because I put the word "dog" and "fear" in a blog post? Are they that sophisticated now?
Creepy. No wonder Cherry hid.
Maybe it's some weird form of cross-marketing. After all, most of my websearches have to do with medical anomolies such as dwarves or conjoined twins, most of the rest have to do with cancer and one or two are to find out what Josh Holloway is up to these days. Based on those searches, I began to wonder, is this something that would be good for a cancer patient? We all are intimately familiar with off-label uses for medication - perhaps this Thundershirt could be used off-label in some way too. I mean, if it's good for a dog it has to be good for a human as well, am I right? Lots of woman are afraid of chemo - would putting on this shirt soothe those fears? What about post-mastectomy - they wrap us up pretty tight. Could this be a substitute, maybe help prevent seromas?
Me? I'm not afraid of thunder, but I am afraid of spiders. Could this Thundershirt help me with that? Could I put on the Thundershirt before I go clean my baseboards?
(Y'all, I was just kidding! You know me, I don't clean the baseboards, don't worry!)
Do you know they have thundershirts for cats now? Would you try to put one of those things on your cat? I know I wouldn't try it with mine, unless I wanted shredded arms and a few days in the hospital trying to control infections.
Even the cat in their own ad doesn't look very happy about this situation. I hope that cat doesn't start following me around the Internet.
The main question is: why don't ads with Josh Holloway follow me around the internet? Why is it pet products and copy machines and never super handsome men? And, what IS he up to these days?
Monday, August 6, 2012
BlogTalkRadio - Surgery
Today's effort was not my finest but here it is. Thanks to Betty for calling!
Next week we are discussing Life with Mets. I would adore if it all you metster bloggers would give me a call and tell me how you do it!
Listen to internet radio with But Doctor I hate pink on Blog Talk Radio
Next week we are discussing Life with Mets. I would adore if it all you metster bloggers would give me a call and tell me how you do it!
Sunday, August 5, 2012
Contest Winner - Medical Day Planner
I like to announce contest winners on video so you can see I'm being fair.
Below is the contest winner of The Medical Day Planner: The Guide to Help Navigate the Medical Maze:
Anne, please send me your address so the book can be shipped, and congratulations! If you decide you'd like to purchase the book, please use the link above.
Below is the contest winner of The Medical Day Planner: The Guide to Help Navigate the Medical Maze:
Anne, please send me your address so the book can be shipped, and congratulations! If you decide you'd like to purchase the book, please use the link above.