I posted this video once before on the blog, and wanted to share it with you again today. It is so deeply metaphorical for me and my journey through breast cancer, and there were many sleepless nights on chemo crack that I played the video again and again on my ipod.
This is what I had to say about it on my FB page today:
This song and this video was my anthem all during cancer treatment, shedding and letting go of my old self, carried and lifted by the people who love me, baptized by adversity, saved by grace, answering the call to rise. My hope is unstoppable. My faith is unshakable. My spirit unbreakable. I walk through every door. I surrender to this precious sacred life. Amen.
Rockin the Pink, that's how I roll now...
Yes, early detection saves lives,
but we want a cure.
Give us the cure.
Relay for Life is only ten days away.
See you Aug. 6 at 9 pm, where I will be the speaker at the Luminaria ceremony. Please come and share in this moving ceremony, and meet The Good Witch too! (St. Vincent's-St. Pat's High School, Vallejo)
Wednesday, July 27, 2011
Tuesday, July 26, 2011
Rolling in the DIEP
In these months leading up to my reconstruction, you know I'm going to be talking myself through this, while I educate myself and you about all the ins and outs of breast reconstruction using my own tissue, not implants.
For those of you new to the blog, you may not know that when I had a bilateral (or double) mastectomy, my breast surgeon did a skin-sparing, nipple sparing mastectomy. Although only Flopsy, my left breast, had cancer, I chose to do both breasts since Flopsy and Mopsy have always gone everywhere together. Joking aside, it made sense to me to do both breasts, hopefully lowering my risk of an occurrence in Mopsy, and an improved and symmetrical result if both breasts were "re-made" together. I always wanted a breast reduction anyway, not exactly how I thought I'd get one!
A skin-sparing mastectomy leaves the breast and sometimes the nipple, and does not cut the breast down to the chest wall. The breast surgeon removes the breast tissue inside which fills the breasts, including the cancerous tissue. After my primary surgery, I was left with a deflated Flopsy and Mopsy, nipples still attached, waiting to be filled during reconstruction surgery that will be done by my Plastic Surgeon.
If there are those of you eligible to do your primary surgery (the one to get rid of the cancer) and your reconstruction surgery (to cosmetically fix your breasts) at the same time, I think it's a great way to go! I sometimes think about that, how things would have been different for me, medically and mentally, if I had been able to wake up from a mastectomy with Flopsy and Mopsy The Sequel, in place. It would have been grand.
All things considered, it was probably just as well that fate intervened and this did not happen for me. I'm in a much better place now, physically and spiritually, having completed chemo 10 months ago, instead of having this major surgery a month out of chemo. There is continued debate regarding radiating reconstructed breasts as well. There are some convincing studies out of MD Anderson ( a big cancer research hospital) that suggest many women who have newly reconstructed breasts radiated have to go in for additional surgery to fix the effects of radiation.
The decision of what method reconstruction for any woman who has to make it because of cancer is a very personal one, and not easy to make after that blow. These are some of my reasons why I want to do the DIEP. The first one is simple and basic - I don't like implants. I don't like how they look, how they feel, how they move, and the fact that you have to get them replaced every ten years or so. Now there are plenty of Sisters who have chosen this path, and are very happy with their results and they look great. It's just not for me.
I also have great concern that my body might not tolerate implants. I had major problems with my two ports and PICC line. The second port only lasted a few months before my body was trying to expel it. Can you imagine the outcome if I had two implants placed in my body? This may not be a logical argument, but I do know that the problems I had with my ports and PICC line were considered unusual and puzzling. I just don't wanna go there with implants.
Another huge reason I think this is the procedure for me? I have the perfect donor site! After two C-sections, I'd be very happy to part with a poochy tummy that makes zipping up pants difficult. I often have to buy a larger size than what my hips and butt and waist need, just to accommodate the pooch. Even if I didn't need new boobs, I'd be thrilled to have that gone! It makes logical sense, using my own tissue, getting a tummy tuck in the deal, and having a new rack that feels and looks very natural.
All that said, I am not looking forward to the whole ordeal one damn bit.
My Sister, Irish BC Warrior, sent me a great email after my last post about my reservations about the procedure, and I asked if I could share it with you. Thank you Sister for graciously saying yes. Here it is.
I wanted to respond to your blog about your reconstruction, but wanted a little more freedom then the response block on the blog.
I won't kid you, this surgery is a bitch. Two to three months is just about a right estimation of how long it will take you to get back up to anywhere close to your regular "power level." And yeah, you're going to be back in "drain city," but my drains came out in about a week.
But I can't even begin to tell you how fabulous the "foobs" are when they build them out of your own body tissue. It looks fabulous and the shape and texture is exactly like my right breast . . . if you take into account that the doc did a breast lift on the right side so it didn't sag while the new one he built for me is all perky. It's warm to the touch and I hear implants aren't. It moves like a real breast.
The tummy tuck (as wondrous as that is) is the worst part of it. You'll have to sleep at a 45 degree angle (because laying flat or on your side will be impossible) for weeks. So plan for it. I worked it out, but I really wish I had a recliner to sleep in for awhile. My abdominal scar has faded almost entirely . . . but I'm more than a year out.
Keep moving as much as you can without over-tiring yourself. It helps with circulation and prevents stiffness in your abdomen. Stay on top of your pain meds (yes, that again) because it can get away from you if you're not vigilant. Make sure you have lots of roomy sweat pants with elastic waist bands. Zippers and buttons are not going to happen for weeks. Drag back out your slip on shoes, because bending over to tie shoes also ain't gonna happen.
But Debbie, I'll tell you again . . . this is a freaking miracle. It looks and feels so real, I just can't find the words to tell you. I didn't have him build me a nipple because I've heard so much about there being problems with infections and stuff. I had a 3D tattoo and I'm very pleased with it.
I have my life back because of this surgery. I'm that sexy Irish lass again because of this surgery. I look so good in my clothes that I'm not even the slightest bit self conscious. I can even feel blessed when I look at myself in the mirror. You're going to love it. It's tough, but a couple of months after it's done, you are gonna be a happy Tink.
You can do this. You deserve this. I'm here with you every step of the way. If you get scared or nervous, email me your phone number and I'll call and we'll talk.
Hugs
Thank you so much Sister!!!! What a great letter, and fabulous reminder of why I made the decision in the first place to do this procedure. Yes, it's considerably more intensive than implant surgery, but I think it's the right decision for me, IF I CAN JUST MUSTER THE COURAGE TO GO THROUGH THAT SHIT AGAIN! If you are new to the blog, you may not know I have crowned myself "Queen of the Glitch" - a title I earned da hard way in Cancer Camp.
Anyway, back to my Sisters! This network and safety net of Sisters that have come into my life because of this blog and my posts on the NOS Breast Cancer Message board has been an incredible blessing! Not just for the tender comfort of knowing I am not alone in this, but the real life wisdom from Sisters who have gone through this stuff! Their wisdom, born from experience, is far far better and reliable information than even the best and most well considered medical websites and literature.
I am indebted to all the Sisters ahead of me on the path, like Irish BC Warrior, who have come to me, from all over this country of ours, to encourage and light a path for me.
It is my deepest wish and hope that in some small way, my blog is paying it forward, lighting the way for Sisters behind me on the path who have just heard the words
"You have breast cancer."
Here's to my Sistahs! Rock that shit, wherever you are on the path, grab your Sister's hand ahead of you, and reach back and grab a Sister behind you!
That's how we roll!!!!!!!!!!!!!!!!!!!!!!
For those of you new to the blog, you may not know that when I had a bilateral (or double) mastectomy, my breast surgeon did a skin-sparing, nipple sparing mastectomy. Although only Flopsy, my left breast, had cancer, I chose to do both breasts since Flopsy and Mopsy have always gone everywhere together. Joking aside, it made sense to me to do both breasts, hopefully lowering my risk of an occurrence in Mopsy, and an improved and symmetrical result if both breasts were "re-made" together. I always wanted a breast reduction anyway, not exactly how I thought I'd get one!
A skin-sparing mastectomy leaves the breast and sometimes the nipple, and does not cut the breast down to the chest wall. The breast surgeon removes the breast tissue inside which fills the breasts, including the cancerous tissue. After my primary surgery, I was left with a deflated Flopsy and Mopsy, nipples still attached, waiting to be filled during reconstruction surgery that will be done by my Plastic Surgeon.
If there are those of you eligible to do your primary surgery (the one to get rid of the cancer) and your reconstruction surgery (to cosmetically fix your breasts) at the same time, I think it's a great way to go! I sometimes think about that, how things would have been different for me, medically and mentally, if I had been able to wake up from a mastectomy with Flopsy and Mopsy The Sequel, in place. It would have been grand.
All things considered, it was probably just as well that fate intervened and this did not happen for me. I'm in a much better place now, physically and spiritually, having completed chemo 10 months ago, instead of having this major surgery a month out of chemo. There is continued debate regarding radiating reconstructed breasts as well. There are some convincing studies out of MD Anderson ( a big cancer research hospital) that suggest many women who have newly reconstructed breasts radiated have to go in for additional surgery to fix the effects of radiation.
The decision of what method reconstruction for any woman who has to make it because of cancer is a very personal one, and not easy to make after that blow. These are some of my reasons why I want to do the DIEP. The first one is simple and basic - I don't like implants. I don't like how they look, how they feel, how they move, and the fact that you have to get them replaced every ten years or so. Now there are plenty of Sisters who have chosen this path, and are very happy with their results and they look great. It's just not for me.
I also have great concern that my body might not tolerate implants. I had major problems with my two ports and PICC line. The second port only lasted a few months before my body was trying to expel it. Can you imagine the outcome if I had two implants placed in my body? This may not be a logical argument, but I do know that the problems I had with my ports and PICC line were considered unusual and puzzling. I just don't wanna go there with implants.
Another huge reason I think this is the procedure for me? I have the perfect donor site! After two C-sections, I'd be very happy to part with a poochy tummy that makes zipping up pants difficult. I often have to buy a larger size than what my hips and butt and waist need, just to accommodate the pooch. Even if I didn't need new boobs, I'd be thrilled to have that gone! It makes logical sense, using my own tissue, getting a tummy tuck in the deal, and having a new rack that feels and looks very natural.
All that said, I am not looking forward to the whole ordeal one damn bit.
My Sister, Irish BC Warrior, sent me a great email after my last post about my reservations about the procedure, and I asked if I could share it with you. Thank you Sister for graciously saying yes. Here it is.
I wanted to respond to your blog about your reconstruction, but wanted a little more freedom then the response block on the blog.
I won't kid you, this surgery is a bitch. Two to three months is just about a right estimation of how long it will take you to get back up to anywhere close to your regular "power level." And yeah, you're going to be back in "drain city," but my drains came out in about a week.
But I can't even begin to tell you how fabulous the "foobs" are when they build them out of your own body tissue. It looks fabulous and the shape and texture is exactly like my right breast . . . if you take into account that the doc did a breast lift on the right side so it didn't sag while the new one he built for me is all perky. It's warm to the touch and I hear implants aren't. It moves like a real breast.
The tummy tuck (as wondrous as that is) is the worst part of it. You'll have to sleep at a 45 degree angle (because laying flat or on your side will be impossible) for weeks. So plan for it. I worked it out, but I really wish I had a recliner to sleep in for awhile. My abdominal scar has faded almost entirely . . . but I'm more than a year out.
Keep moving as much as you can without over-tiring yourself. It helps with circulation and prevents stiffness in your abdomen. Stay on top of your pain meds (yes, that again) because it can get away from you if you're not vigilant. Make sure you have lots of roomy sweat pants with elastic waist bands. Zippers and buttons are not going to happen for weeks. Drag back out your slip on shoes, because bending over to tie shoes also ain't gonna happen.
But Debbie, I'll tell you again . . . this is a freaking miracle. It looks and feels so real, I just can't find the words to tell you. I didn't have him build me a nipple because I've heard so much about there being problems with infections and stuff. I had a 3D tattoo and I'm very pleased with it.
I have my life back because of this surgery. I'm that sexy Irish lass again because of this surgery. I look so good in my clothes that I'm not even the slightest bit self conscious. I can even feel blessed when I look at myself in the mirror. You're going to love it. It's tough, but a couple of months after it's done, you are gonna be a happy Tink.
You can do this. You deserve this. I'm here with you every step of the way. If you get scared or nervous, email me your phone number and I'll call and we'll talk.
Hugs
Thank you so much Sister!!!! What a great letter, and fabulous reminder of why I made the decision in the first place to do this procedure. Yes, it's considerably more intensive than implant surgery, but I think it's the right decision for me, IF I CAN JUST MUSTER THE COURAGE TO GO THROUGH THAT SHIT AGAIN! If you are new to the blog, you may not know I have crowned myself "Queen of the Glitch" - a title I earned da hard way in Cancer Camp.
Anyway, back to my Sisters! This network and safety net of Sisters that have come into my life because of this blog and my posts on the NOS Breast Cancer Message board has been an incredible blessing! Not just for the tender comfort of knowing I am not alone in this, but the real life wisdom from Sisters who have gone through this stuff! Their wisdom, born from experience, is far far better and reliable information than even the best and most well considered medical websites and literature.
I am indebted to all the Sisters ahead of me on the path, like Irish BC Warrior, who have come to me, from all over this country of ours, to encourage and light a path for me.
It is my deepest wish and hope that in some small way, my blog is paying it forward, lighting the way for Sisters behind me on the path who have just heard the words
"You have breast cancer."
Here's to my Sistahs! Rock that shit, wherever you are on the path, grab your Sister's hand ahead of you, and reach back and grab a Sister behind you!
That's how we roll!!!!!!!!!!!!!!!!!!!!!!
Sunday, July 24, 2011
there are candles burning
there are candles burning
around a high school track tonight.
every candle has a name.
we light the candles to remember
and honor
and send lights up to heaven
like whispered prayers.
there are candles burning tonight.
there is one for my Mama.
and there is one for me.
I can't sleep, thinking of all those candles lit
for all those hurt
and wrecked
and lost
and found
by cancer.
there are candles burning tonight.
there is one for my Mama.
and there is one for me.
fairfield relay for life, thank you kimberly
around a high school track tonight.
every candle has a name.
we light the candles to remember
and honor
and send lights up to heaven
like whispered prayers.
there are candles burning tonight.
there is one for my Mama.
and there is one for me.
I can't sleep, thinking of all those candles lit
for all those hurt
and wrecked
and lost
and found
by cancer.
there are candles burning tonight.
there is one for my Mama.
and there is one for me.
fairfield relay for life, thank you kimberly
Thursday, July 21, 2011
This Time Last Year
I was browsing through some of my posts from this time last year. I was only half way through chemo, and Tink was pissed folks.
Wow what a summer that was, on chemo, dwindling estrogen, and bald. What a summer. and what did I have to look forward to? A double mastectomy and radiation. What a summer.
Sometimes when I go back through the blog, and everything I went through, shit, I don't even know how I did it. I really don't.
I do know I was carried by all of you, Dear Readers, and my Sisters, and my family and friends and coworkers, and a faith that was tested but hung on.
I am still working through the kinks of what is left from chemo damage, and surgery too. Sometimes these radiation knots in my chest hurt like the dickens. I'm wondering if most of that scar tissue will get cut out when I get the reconstruction done.
I need to decide by September whether or not to go ahead with the reconstruction in November, or wait until after the first of the year. I'd like to get it done, I'd like it all done and over with, but I am dreading going through it. I ain't gonna lie.
I know what breast surgery is like, and this one will be a real doozy because I'll be having a tummy tuck as well, which is what my new boobs will be made of. I will be in the hospital at least a week, and the recovery time will be 2-3 months. I'll have drains again, that will be in at least two weeks or more, and the first couple weeks after a DIEP procedure, they don't even want you to stand up straight. It's some major stuff.
Oh boy.
I really don't want to do it. Yes yes, I want the end result, but I really don't want to go through it.
and there's another little thing...
I admit Sisters, I have this secret fear that after the surgery I'll wake up with no new boobs and they'll tell me, we couldn't do it, we found more cancer.
This is what it's like, this damn cancer thing - it's like being struck with lightning and you're never sure if it will strike again and if you'll survive the next one. I know plenty of Sisters who have had recurrences. As one Sister Suzy put it "I'm back on the chemo train again."
Now that I've been there done that with ONE FULL YEAR OF CANCER TREATMENT, I just don't know if I could do it again if I had to.
Well lemme put it this way.
I know I could do it.
I just wouldn't want to.
Lord God in heaven, I got enough street cred already right? I never want to do this again.
The truth is, it happens all the time, that's why the first five years are so important. The cancer has the highest risk of returning in the first two to three.
I remember last Fall, I couldn't imagine going months and months with no boobs. I was devastated I couldn't get my reconstruction done at the same time as my primary surgery.
Now I'm seriously weighing am I ready to do this?
I
don't
know.
Wow what a summer that was, on chemo, dwindling estrogen, and bald. What a summer. and what did I have to look forward to? A double mastectomy and radiation. What a summer.
Sometimes when I go back through the blog, and everything I went through, shit, I don't even know how I did it. I really don't.
I do know I was carried by all of you, Dear Readers, and my Sisters, and my family and friends and coworkers, and a faith that was tested but hung on.
I am still working through the kinks of what is left from chemo damage, and surgery too. Sometimes these radiation knots in my chest hurt like the dickens. I'm wondering if most of that scar tissue will get cut out when I get the reconstruction done.
I need to decide by September whether or not to go ahead with the reconstruction in November, or wait until after the first of the year. I'd like to get it done, I'd like it all done and over with, but I am dreading going through it. I ain't gonna lie.
I know what breast surgery is like, and this one will be a real doozy because I'll be having a tummy tuck as well, which is what my new boobs will be made of. I will be in the hospital at least a week, and the recovery time will be 2-3 months. I'll have drains again, that will be in at least two weeks or more, and the first couple weeks after a DIEP procedure, they don't even want you to stand up straight. It's some major stuff.
Oh boy.
I really don't want to do it. Yes yes, I want the end result, but I really don't want to go through it.
and there's another little thing...
I admit Sisters, I have this secret fear that after the surgery I'll wake up with no new boobs and they'll tell me, we couldn't do it, we found more cancer.
This is what it's like, this damn cancer thing - it's like being struck with lightning and you're never sure if it will strike again and if you'll survive the next one. I know plenty of Sisters who have had recurrences. As one Sister Suzy put it "I'm back on the chemo train again."
Now that I've been there done that with ONE FULL YEAR OF CANCER TREATMENT, I just don't know if I could do it again if I had to.
Well lemme put it this way.
I know I could do it.
I just wouldn't want to.
Lord God in heaven, I got enough street cred already right? I never want to do this again.
The truth is, it happens all the time, that's why the first five years are so important. The cancer has the highest risk of returning in the first two to three.
I remember last Fall, I couldn't imagine going months and months with no boobs. I was devastated I couldn't get my reconstruction done at the same time as my primary surgery.
Now I'm seriously weighing am I ready to do this?
I
don't
know.
Wednesday, July 20, 2011
Menopausal Mermaid
I almost had the pool to myself today, going at noon instead of my usual water aerobics at 9 a.m. I took it easy this morning, and made the most delicious green smoothie with kale, spinach, celery, parsley, very ripe tomatoes, english cucumber and coconut water.
I was surprised how quiet the pool was, as we are having another hot spell. I grabbed a pink noodle and floated and paddled and biked and canoed up and down the pool. Jumped in the hot tub for a few, then back into the pool which felt downright icy after that!
Did you know that water is great compression for your lymphatic system and increases blood flow to your heart? Did you know that swimming laps does more for your core and metabolism than walking? Did you know that hydro-therapy is ancient ancient medicine?
I must have been either a dolphin or a mermaid
in some other life,
cause when I get in the water,
it
feels
like
I'm
home.
I was surprised how quiet the pool was, as we are having another hot spell. I grabbed a pink noodle and floated and paddled and biked and canoed up and down the pool. Jumped in the hot tub for a few, then back into the pool which felt downright icy after that!
Did you know that water is great compression for your lymphatic system and increases blood flow to your heart? Did you know that swimming laps does more for your core and metabolism than walking? Did you know that hydro-therapy is ancient ancient medicine?
I must have been either a dolphin or a mermaid
in some other life,
cause when I get in the water,
it
feels
like
I'm
home.
Tuesday, July 19, 2011
Tink
If Tinkerbell was middle aged now,
put on a few pounds,
still occasionally pouty
and a breast cancer survivor,
I think she'd look just like me.
put on a few pounds,
still occasionally pouty
and a breast cancer survivor,
I think she'd look just like me.
Monday, July 18, 2011
I Made This For You Sister
sometimes I still can't sleep at night. every now and then. I lay in this bed in the dark and the quiet, while all the creatures in this house sleep their peaceful sleep. A Husband. A boy. Three furry angels. Finches. Babies of finches. They all dream while I wonder if this is a chemo dream.
Those nights are still so vivid, up till all hours, writing, thinking, crying, grateful, scared, drugged, cancerous, hairless, fearless, alone, awake.
I reach up.
Place my hand on my head tonight.
Just to make sure.
Yes. There is hair there.
This is no chemo dream.
That was then.
This is now.
I am thinking about you tonight Sister, I am sending this out to wherever you are and whoever you are on this path. So many of you still in the thick of it, my Sisters. Not just my breast cancer Sisters, all my Sisters doing their best dealing with all kinds of cancer shit. Still in the thick of it. Chemo is no dream for you right now. Still in the thick of it.
I made somethin for you. So you might feel better. So you'll keep going. I made somethin for you.
That's for you. See the little picture? That's me, during my last chemo infusion, five months in.
The big picture? That's me today. One year and three months after a cancer diagnosis. Ten months after finishing chemo. Nine months after a BLM. Six months after completing radiation.
I made this for you. So you might feel better. So you'll keep going.
there there now Sister.
there there now...
Those nights are still so vivid, up till all hours, writing, thinking, crying, grateful, scared, drugged, cancerous, hairless, fearless, alone, awake.
I reach up.
Place my hand on my head tonight.
Just to make sure.
Yes. There is hair there.
This is no chemo dream.
That was then.
This is now.
I am thinking about you tonight Sister, I am sending this out to wherever you are and whoever you are on this path. So many of you still in the thick of it, my Sisters. Not just my breast cancer Sisters, all my Sisters doing their best dealing with all kinds of cancer shit. Still in the thick of it. Chemo is no dream for you right now. Still in the thick of it.
I made somethin for you. So you might feel better. So you'll keep going. I made somethin for you.
That's for you. See the little picture? That's me, during my last chemo infusion, five months in.
The big picture? That's me today. One year and three months after a cancer diagnosis. Ten months after finishing chemo. Nine months after a BLM. Six months after completing radiation.
I made this for you. So you might feel better. So you'll keep going.
there there now Sister.
there there now...
Sunday, July 17, 2011
Relay for Life Appearance, Fairfield, CA
Happy Sunday.
I had the honor of speaking at a pre-Relay event for cancer survivors and their caregivers in Fairfield, CA this afternoon. Prior to an event, I am so damn nervous, it's almost unbearable, and I think "I can't do this, why did I say yes, I can't do it." Right up until I walk on the stage I am thinking this, and then I get there and an inner voice calms me and says "Go Girl, You can do this. You will do this."
Here's the video, shot by Husband, and downloaded by my boy Robin. Yes, of course there was crying involved, don'tcha know me by now?
I'm hoping that as I continue to move into survivorship, this will get easier for me. I'm such a newbie, having just finished treatment early this year. I look forward to when the strength that comes years after a diagnosis will replace the grief and tears I still feel now, new to this gig.
For now,
this is what it looks like,
easing into acceptance,
making the turn,
telling my story.
Several people approached me afterwards to hug me and thank me, like a lovely lady named Jan who saw me at the Cancer Survivors Day event. She is now a big fan, and was over the moon to see me again today. Thank you Jan.
An elderly woman and her Husband approached me; she had to take a moment to speak, working hard to control deep grief.
Thank you.
Thank you. She whispered and hugged me.
We lost our daughter to breast cancer.
Thank you.
Then they hugged me together.
God Bless You.
God has blessed me so abundantly, and I am so humbled and moved by all the love I give with all my heart that is returning home to me.
I have found my calling.
p.s.
Thank you Kimberly for the lovely package sent my way, I absolutely loved all of it, and the journal with these words on the front "Love. Dream. Inspire." She wrote 4 incredible quotes inside but these spoke deeply to me:
The role of a writer is not to say what we all can say, but what we are unable to say.
Anais Nin
Fill your paper with the breathings of your heart. William Wordsworth
Thank you Kimberly, for being such a kind and generous supporter of me and my blog, and my new role as an ACS Hero of Hope.
Happy Happy Sunday one and all.
Love the stuffin out of your life - thank you to my friend Pat (Irish BC Warrior) who affectionately said she "loved the stuffin" out of me.
I had the honor of speaking at a pre-Relay event for cancer survivors and their caregivers in Fairfield, CA this afternoon. Prior to an event, I am so damn nervous, it's almost unbearable, and I think "I can't do this, why did I say yes, I can't do it." Right up until I walk on the stage I am thinking this, and then I get there and an inner voice calms me and says "Go Girl, You can do this. You will do this."
Here's the video, shot by Husband, and downloaded by my boy Robin. Yes, of course there was crying involved, don'tcha know me by now?
I'm hoping that as I continue to move into survivorship, this will get easier for me. I'm such a newbie, having just finished treatment early this year. I look forward to when the strength that comes years after a diagnosis will replace the grief and tears I still feel now, new to this gig.
For now,
this is what it looks like,
easing into acceptance,
making the turn,
telling my story.
Several people approached me afterwards to hug me and thank me, like a lovely lady named Jan who saw me at the Cancer Survivors Day event. She is now a big fan, and was over the moon to see me again today. Thank you Jan.
An elderly woman and her Husband approached me; she had to take a moment to speak, working hard to control deep grief.
Thank you.
Thank you. She whispered and hugged me.
We lost our daughter to breast cancer.
Thank you.
Then they hugged me together.
God Bless You.
God has blessed me so abundantly, and I am so humbled and moved by all the love I give with all my heart that is returning home to me.
I have found my calling.
p.s.
Thank you Kimberly for the lovely package sent my way, I absolutely loved all of it, and the journal with these words on the front "Love. Dream. Inspire." She wrote 4 incredible quotes inside but these spoke deeply to me:
The role of a writer is not to say what we all can say, but what we are unable to say.
Anais Nin
Fill your paper with the breathings of your heart. William Wordsworth
Thank you Kimberly, for being such a kind and generous supporter of me and my blog, and my new role as an ACS Hero of Hope.
Happy Happy Sunday one and all.
Love the stuffin out of your life - thank you to my friend Pat (Irish BC Warrior) who affectionately said she "loved the stuffin" out of me.
Saturday, July 16, 2011
Hindsight
It's something all of us do. Hindsight. The what ifs. What if I had done this or that differently? It can make you crazy.
When you have faced a cancer diagnosis, and survived CANCER TREATMENT, especially if you are left with collateral damage from it, sometimes you mull this stuff in your head and think, if only we had... Even now as I swallow another daily dose of Tamoxifen, which I will be on the next five years, I wonder will I be one of those affected by its worst side effects?
I had a talk with The Good Witch about this recently, had an appointment with her to touch base and have her check a little rash on Mopsy I was slightly concerned about. Turns out it was just a heat rash, but after a breast cancer diagnosis, you gotta have every single thing checked to make sure all is ok.
As part of my appointment we discussed my continued neuropathy in my right foot, and slight neuropathy in my hands, as a result of the chemo drug Taxol. Just as a refresher, I had four rounds of AC, or adriamycin cytoxan, over eight weeks. One week on, one week off.
That was followed up by Taxol, also known as Paclitaxel, weekly infusions for 12 weeks. I was doing FABULOUSLY on the Taxol, and had even returned to work a night or two a week. Nine weeks in the neuropathy started. I had to stop working again, and it progressed to the point of right foot completely numb, hands stiff, and eyes twitching.
It did get considerably better but I am still left with right toes that never woke up, hands that get stiff and/or numb frequently, and occasionally now, since returning to work, the tips of my left toes are painful and prickly.
Sometimes I wonder, what if we had stopped the Taxol right when my neuropathy began? Would I still have what appears to be permanent nerve damage?
Recently I read an article that floored me on this very subject. It was published in Internal Medicine News, and this is from the article:
Researchers have identified a genetic biomarker that can predict a patient’s likelihood of experiencing taxane-induced peripheral neuropathy.
Older people and blacks, the same study found, are at elevated risk of developing neuropathy, which affects up to a third of people receiving chemotherapy with taxane drugs such as paclitaxel.
The marker in the RWDD3 gene, if developed into a blood test, would allow clinicians to identify patients vulnerable to peripheral neuropathy, which is characterized by a pain and numbness in fingers and toes and can keep patients from receiving the intended amount of their therapy, complicating treatment.
The findings, released at a press briefing in advance of the American Society of Clinical Oncology’s annual meeting, came from a large genome-wide association study of 2,204 early-stage breast cancer patients enrolled in a clinical trial that used weekly paclitaxel for 12 weeks in all arms. This marked the first time a genetic predictive biomarker has been reported for taxane-induced neuropathy.
So to paraphrase, they will develop a simple blood test to identify those with a genetic marker most likely to suffer neuropathy so that a different treatment plan can be chosen or modified with this in mind.
The Good Witch said that with every patient, she also has some hindsight. Regarding my neuropathy, she said "I didn't have the clinical studies to back up if you had received only 85% of your treatment, but I have looked back on it and wondered, just like you, should we have done things differently?" In other words, if we had stopped the Taxol when the neuropathy kicked in at week nine, would it have made a difference? Would the neuropathy have gone away? Would receiving only 9 treatments instead of 12 have compromised the fight to kill my cancer?
Every single day the landscape of how we diagnose and treat cancer changes, and I am happy to see the tide shifting towards placing greater importance and consideration on a patient's quality of life. Don't get me wrong, I know I got the best there was for what we knew AT THE TIME, but it's hard to live with the damage of cancer treatment, especially when the new studies come out and you are on the wrong side of progress.
This is why it is important to support and fund research for a cure, BUT IN THE MEANTIME, for new protocols to promote the quality of life during and after treatment for anyone facing a cancer diagnosis. I used a quote in my blog once, and it seems appropriate again.
Cancer treatment is like beating a dog with a stick to kills its fleas.
Some days, that stick feels like it was a club.
I pray for the time when no Mother, Sister or Daughter has to hear "You have breast cancer."
In the meantime, I pray for the Sisters who will follow me,
that the stick gets smaller and smaller and smaller.
When you have faced a cancer diagnosis, and survived CANCER TREATMENT, especially if you are left with collateral damage from it, sometimes you mull this stuff in your head and think, if only we had... Even now as I swallow another daily dose of Tamoxifen, which I will be on the next five years, I wonder will I be one of those affected by its worst side effects?
I had a talk with The Good Witch about this recently, had an appointment with her to touch base and have her check a little rash on Mopsy I was slightly concerned about. Turns out it was just a heat rash, but after a breast cancer diagnosis, you gotta have every single thing checked to make sure all is ok.
As part of my appointment we discussed my continued neuropathy in my right foot, and slight neuropathy in my hands, as a result of the chemo drug Taxol. Just as a refresher, I had four rounds of AC, or adriamycin cytoxan, over eight weeks. One week on, one week off.
That was followed up by Taxol, also known as Paclitaxel, weekly infusions for 12 weeks. I was doing FABULOUSLY on the Taxol, and had even returned to work a night or two a week. Nine weeks in the neuropathy started. I had to stop working again, and it progressed to the point of right foot completely numb, hands stiff, and eyes twitching.
It did get considerably better but I am still left with right toes that never woke up, hands that get stiff and/or numb frequently, and occasionally now, since returning to work, the tips of my left toes are painful and prickly.
Sometimes I wonder, what if we had stopped the Taxol right when my neuropathy began? Would I still have what appears to be permanent nerve damage?
Recently I read an article that floored me on this very subject. It was published in Internal Medicine News, and this is from the article:
Researchers have identified a genetic biomarker that can predict a patient’s likelihood of experiencing taxane-induced peripheral neuropathy.
Older people and blacks, the same study found, are at elevated risk of developing neuropathy, which affects up to a third of people receiving chemotherapy with taxane drugs such as paclitaxel.
The marker in the RWDD3 gene, if developed into a blood test, would allow clinicians to identify patients vulnerable to peripheral neuropathy, which is characterized by a pain and numbness in fingers and toes and can keep patients from receiving the intended amount of their therapy, complicating treatment.
The findings, released at a press briefing in advance of the American Society of Clinical Oncology’s annual meeting, came from a large genome-wide association study of 2,204 early-stage breast cancer patients enrolled in a clinical trial that used weekly paclitaxel for 12 weeks in all arms. This marked the first time a genetic predictive biomarker has been reported for taxane-induced neuropathy.
So to paraphrase, they will develop a simple blood test to identify those with a genetic marker most likely to suffer neuropathy so that a different treatment plan can be chosen or modified with this in mind.
The Good Witch said that with every patient, she also has some hindsight. Regarding my neuropathy, she said "I didn't have the clinical studies to back up if you had received only 85% of your treatment, but I have looked back on it and wondered, just like you, should we have done things differently?" In other words, if we had stopped the Taxol when the neuropathy kicked in at week nine, would it have made a difference? Would the neuropathy have gone away? Would receiving only 9 treatments instead of 12 have compromised the fight to kill my cancer?
Every single day the landscape of how we diagnose and treat cancer changes, and I am happy to see the tide shifting towards placing greater importance and consideration on a patient's quality of life. Don't get me wrong, I know I got the best there was for what we knew AT THE TIME, but it's hard to live with the damage of cancer treatment, especially when the new studies come out and you are on the wrong side of progress.
This is why it is important to support and fund research for a cure, BUT IN THE MEANTIME, for new protocols to promote the quality of life during and after treatment for anyone facing a cancer diagnosis. I used a quote in my blog once, and it seems appropriate again.
Cancer treatment is like beating a dog with a stick to kills its fleas.
Some days, that stick feels like it was a club.
I pray for the time when no Mother, Sister or Daughter has to hear "You have breast cancer."
In the meantime, I pray for the Sisters who will follow me,
that the stick gets smaller and smaller and smaller.
Monday, July 11, 2011
Show Me The Money Baby! ACS Relay for Life!
I just registered to walk in this year's Vallejo Relay for Life for the American Cancer Society, on August 6 at St. Vincent-St. Pat's High School. I am thrilled.
Last year was my first Relay. I was three months into chemo, with 2 to go. Here's a photo of me looking like a little gnome who got breast cancer.
I'll be walking without Flopsy and Mopsy this year, but with a big blond mop and a heart full of love and hopefulness. This summer I am walking not just as a Survivor, but as a Team Member raising money for the American Cancer Society.
If you are interested in supporting me, please visit my Relay page by clicking here!
For those of you who may not have read it, here is a reprint of my blog post from last summer's Relay. Please help me by supporting this worthy cause that really hit home for me and everyone who loves me.
Click here to read my blog post on last year's Relay for Life, only four months after I was diagnosed.
I will be speaking at the Luminaria ceremony at this year's event, which starts at 9 pm. I am so excited and honored to be part of this touching tribute, honoring all those affected by cancer, and all those we lost. These are the luminarias I decorated last year for my Mom and I.
Thank you thank you for all your support of me, my blog, and my continued efforts on behalf of Sisters everywhere affected by breast cancer.
Last year was my first Relay. I was three months into chemo, with 2 to go. Here's a photo of me looking like a little gnome who got breast cancer.
I'll be walking without Flopsy and Mopsy this year, but with a big blond mop and a heart full of love and hopefulness. This summer I am walking not just as a Survivor, but as a Team Member raising money for the American Cancer Society.
If you are interested in supporting me, please visit my Relay page by clicking here!
For those of you who may not have read it, here is a reprint of my blog post from last summer's Relay. Please help me by supporting this worthy cause that really hit home for me and everyone who loves me.
Click here to read my blog post on last year's Relay for Life, only four months after I was diagnosed.
I will be speaking at the Luminaria ceremony at this year's event, which starts at 9 pm. I am so excited and honored to be part of this touching tribute, honoring all those affected by cancer, and all those we lost. These are the luminarias I decorated last year for my Mom and I.
Thank you thank you for all your support of me, my blog, and my continued efforts on behalf of Sisters everywhere affected by breast cancer.
Friday, July 8, 2011
Golly Is This Lady Long Winded or What??!!
Here is the conclusion of my speech for National Cancer Survivors Day. Thanks again to my boy for being his Mama's tech geek.
I got my first "Welcome" email for Heroes of Hope. I am so excited! I will be attending a Summit for ACS in Anaheim in September, and will get to meet all the other California Heroes of Hope. There are 30 of us for the state.
In the meantime, have you signed up for a Relay for Life this summer near you? I hope so. It's an incredible event and a great way to support ACS for all they do for us cancer people, like me.
Last summer was my first relay (Vallejo/Benicia), and I walked the track as a Survivor still in chemo, with my purple shirt and purple scarf on my bald head, and cancerous Flopsy! This summer I will be part of my friend Kim's team, proudly walking the track with a big blond mop of hair, boobless and cancer free! I will be speaking at the Luminaria Ceremony, and yes, there will be lots of cryin!
Here is a link to learn more about Relay for Life!
Here is the link to the local Relay I will be participating in! Whee hee!
Get out there people!!!! and if you can't get out there, open your wallet!!!
I got my first "Welcome" email for Heroes of Hope. I am so excited! I will be attending a Summit for ACS in Anaheim in September, and will get to meet all the other California Heroes of Hope. There are 30 of us for the state.
In the meantime, have you signed up for a Relay for Life this summer near you? I hope so. It's an incredible event and a great way to support ACS for all they do for us cancer people, like me.
Last summer was my first relay (Vallejo/Benicia), and I walked the track as a Survivor still in chemo, with my purple shirt and purple scarf on my bald head, and cancerous Flopsy! This summer I will be part of my friend Kim's team, proudly walking the track with a big blond mop of hair, boobless and cancer free! I will be speaking at the Luminaria Ceremony, and yes, there will be lots of cryin!
Here is a link to learn more about Relay for Life!
Here is the link to the local Relay I will be participating in! Whee hee!
Get out there people!!!! and if you can't get out there, open your wallet!!!
Thursday, July 7, 2011
regret
I was just finishing up my last table and doing side work. I stepped out for a moment to use the restroom. There is a public restroom for hotel guests and the other tenants, including the restaurant where I work, at the back of the building and just outside our lovely patio.
As I walked in I saw her black work shoes and black pants in the stall next to mine. She was having a conversation on her cell.
Yeah, I had my second chemo infusion today. I'm ok. No, they don't know about it at my job. Yes. I miss you too. I'm ok...
My heart sank. My heart started pounding. I could hear the fear and sadness in her voice. I knew she was not ok. How many times have I told that lie?
I washed my hands and waited for her to come out. I wanted to tell her so many things.
Keep going.
You can do this.
You will get through this.
Here is my phone number.
Come visit my blog.
I'm a Sister too.
Mostly, I wanted to hug her. She sounded so young. I waited at the mirror. I waited. She did not come out. It was awkward, I didn't want to interrupt. I needed to get back to work.
I assume she works for the hotel or a neighboring restaurant. I don't know who she is. I don't know if I will ever know.
She haunts me today.
I am filled with regret.
As I walked in I saw her black work shoes and black pants in the stall next to mine. She was having a conversation on her cell.
Yeah, I had my second chemo infusion today. I'm ok. No, they don't know about it at my job. Yes. I miss you too. I'm ok...
My heart sank. My heart started pounding. I could hear the fear and sadness in her voice. I knew she was not ok. How many times have I told that lie?
I washed my hands and waited for her to come out. I wanted to tell her so many things.
Keep going.
You can do this.
You will get through this.
Here is my phone number.
Come visit my blog.
I'm a Sister too.
Mostly, I wanted to hug her. She sounded so young. I waited at the mirror. I waited. She did not come out. It was awkward, I didn't want to interrupt. I needed to get back to work.
I assume she works for the hotel or a neighboring restaurant. I don't know who she is. I don't know if I will ever know.
She haunts me today.
I am filled with regret.
Wednesday, July 6, 2011
Starting My Day with a Green Smoothie!
Thank you to my friend Jenny, and Dr. Joel Furhman, who started me on my green smoothie craze. It's how I start my day now, and when I get up, my body is saying "Make us that smoothie, we want our smoothie, must have smoothie, NOW!"
Since I'm new to green drinks, I've started out with spinach and a variety of fruits and/or vegetables. I often add a little vanilla almond milk, stevia, flax oil and ice.
I made a killer smoothie today - so so good and refreshing!
I'll call it my Pineapple Mint Lemon Zinger!
In my blender I put a handful of red chard, wheat grass, pineapple, pineapple sage, lemon balm, mint, almond milk, a few drops vanilla stevia, fresh lemon juice and pulp, and some ice. Oh, and a small spoonful of coconut manna.
It was fabulous.
Crisp, refreshing, lemony, minty and a hint of tropical from the pineapple and coconut.
I have noticed distinct changes are happening with me since starting the green smoothie craze.
Swelling and inflammation down.
Better hydration.
Brain feels good.
Brain feels awake.
Mood is good.
Energy is up.
Body is craving more and more variety of fruits and vegetables. Every day.
You have to try this. It's so easy. Much easier than juicing. Get creative, throw it all in a blender, turn that sucker on and DRINK!
Jenny just gave me a book called "The Juice Lady's Living Foods Revolution" by Cherie Calbom. I can't wait to dive into it! The back cover had this to say:
Calbom presents a living foods lifestyle plan that will help you:
I am having great fun coming up with new combinations. Did you know that dark leafy greens have some of the highest nutrient value on the planet? Let me suggest when you first start out, go with mild greens like spinach, chard, romaine and red leaf lettuce. I learned, the hard way, the more bitter and spicy greens, like mustard greens are best mixed with other milder greens. I made a smoothie with only mustard greens as the base and about blew my head off. Wow. Get creative with your ingredients - I love using lots of fresh herbs from my container garden and a variety of fruits and veggies.
Can't wait to try some of the recipes in Cherie's book! Here's a link to Cherie's website.
Go Green People!
Since I'm new to green drinks, I've started out with spinach and a variety of fruits and/or vegetables. I often add a little vanilla almond milk, stevia, flax oil and ice.
I made a killer smoothie today - so so good and refreshing!
I'll call it my Pineapple Mint Lemon Zinger!
In my blender I put a handful of red chard, wheat grass, pineapple, pineapple sage, lemon balm, mint, almond milk, a few drops vanilla stevia, fresh lemon juice and pulp, and some ice. Oh, and a small spoonful of coconut manna.
It was fabulous.
Crisp, refreshing, lemony, minty and a hint of tropical from the pineapple and coconut.
I have noticed distinct changes are happening with me since starting the green smoothie craze.
Swelling and inflammation down.
Better hydration.
Brain feels good.
Brain feels awake.
Mood is good.
Energy is up.
Body is craving more and more variety of fruits and vegetables. Every day.
You have to try this. It's so easy. Much easier than juicing. Get creative, throw it all in a blender, turn that sucker on and DRINK!
Jenny just gave me a book called "The Juice Lady's Living Foods Revolution" by Cherie Calbom. I can't wait to dive into it! The back cover had this to say:
Calbom presents a living foods lifestyle plan that will help you:
- detoxify and lose weight.
- slow the aging process.
- conquer adrenal fatigue.
- bust candida and yeast infections.
- boost your immune system.
- balance your thyroid function.
- become healthier and happier for life
I am having great fun coming up with new combinations. Did you know that dark leafy greens have some of the highest nutrient value on the planet? Let me suggest when you first start out, go with mild greens like spinach, chard, romaine and red leaf lettuce. I learned, the hard way, the more bitter and spicy greens, like mustard greens are best mixed with other milder greens. I made a smoothie with only mustard greens as the base and about blew my head off. Wow. Get creative with your ingredients - I love using lots of fresh herbs from my container garden and a variety of fruits and veggies.
Can't wait to try some of the recipes in Cherie's book! Here's a link to Cherie's website.
Go Green People!
Monday, July 4, 2011
Happy 4th of July!
I hope you are having a wonderful and blessed 4th. I wanted to share with you one of my favorite all time classic 4th of July moments. This photo, of my Mom Nancy, was taken in the mid-80's. My Mom crafted her little Statue of Liberty outfit herself, making her crown out of foil.
She stood and waved at passersby at a July 4 parade in Sausalito. Isn't she adorable?
It's hard to believe my Mom has been gone 21 years now, another beloved lost to cancer. She died of renal cell cancer at the age of 46. My Mom was not a smoker, but was a musician, playing in smoky clubs and bars most of her life. Her doctors were convinced she was a real statistic of the effects of second hand smoke.
As a late teen, Mom lied about her age, saying she was 21 in order to play in a club, while my Dad was still in college. She played in smoke filled rooms for the next twenty five years of her life.
Oh how I have missed the presence of my Mother through all these years; I got pregnant with Batman, my oldest son, a month after her passing.
I can't help but think about her today, how proud she would be of me.
I have so much to celebrate this summer, wow, a real summer! You have no idea how fantastic it is to have a whole summer, not in chemo, and WITH HAIR!
Wheeeeeee!!!!!!!!!!
It's the little things Baby. The little things are the big things.
Much love to you today, Dear Reader, as we celebrate our fabulous country!
I love you Mom; I got the best of you and your spirit and sense of humor, and I got the best from Dad too, especially "When the going gets tough, the tough get going!"
Do what you can, where you are, 99% of life is just showing up!
Happy 4th!
She stood and waved at passersby at a July 4 parade in Sausalito. Isn't she adorable?
 |
| Nancy Diane, my Mama |
As a late teen, Mom lied about her age, saying she was 21 in order to play in a club, while my Dad was still in college. She played in smoke filled rooms for the next twenty five years of her life.
Oh how I have missed the presence of my Mother through all these years; I got pregnant with Batman, my oldest son, a month after her passing.
I can't help but think about her today, how proud she would be of me.
I have so much to celebrate this summer, wow, a real summer! You have no idea how fantastic it is to have a whole summer, not in chemo, and WITH HAIR!
Wheeeeeee!!!!!!!!!!
It's the little things Baby. The little things are the big things.
Much love to you today, Dear Reader, as we celebrate our fabulous country!
I love you Mom; I got the best of you and your spirit and sense of humor, and I got the best from Dad too, especially "When the going gets tough, the tough get going!"
Do what you can, where you are, 99% of life is just showing up!
Happy 4th!
Subscribe to:
Posts (Atom)
