This is Kari, so be warned there may be some Dilaudid induced typos! I'm in Room 533, got up here about 8pm-I think?!?!?
First things first-a huge thanks to all of my cheering section. I love you all and loved waking up this morning to such encouraging messages. Just makes my determination to kick this even stronger!
Now for what you all want to know-lymph nodes on the right were positive. So it looks like chemo is in my near future. We will know more when the complete pathology comes back around Tuesday. He biopsied three, and two were positive. Kind of what we already thought anyway-but again-will know the full deal in a few days. On a positive note-I get to stay a whole two days now!! Woo-hoo!
Was scheduled for a port placement too, but Dr Failing was unable to get it in, so I will be visiting Radiology sometime in the next couple of weeks to get that done. I know a few people there-so I'm thinking arranging that won't be too hard! Speaking of Radiology-my department and co-workers are awesome! Many of them were sporting pink ribbons on their name badges today in my honor, and the CT folks got some 'fight like a girl' pink bracelets to wear. Surgery actually let me wear mine in the OR! And to the Radiologists-thank you all so very much for the generous gift! It was very, very thoughtful! Dr Feiock-thanks for all your help and for doing the Sentinel Node injection for me today. I greatly appreciate how wonderful Dr Feiock has been since the start of this crazy journey for me, and all his kindness and thoroughness, and lido w/epi.....
Everyone in my department for that matter! You all put the R in Rad! (Literally!)
I'm so funny-and high right now!
Now-in truer than true Rawley fashion......Ethan is being admitted to Children's Mercy right now. He came home from school with a low grade fever-no big deal, but by 4pm it was 103. My sister Kate and Hailey took him to Mercy North, and he was transported from up north to downtown by ambulance. He has a red, hot to the touch leg, and so they think it's cellulitis. He's getting some high dose antibiotic right now-Vancomycin and Rocephin and were getting ready to do a doppler when I talked to Kate last. If I can ask a huge favor-I really don't want him alone at all, and clearly I'm not going anywhere, and Brian can't drive. Between my sisters and Teresa and Dad I know they are going to be there with him, and my Mom is staying at our house with Parker- but if anyone can spare some time to swing by and give them a break and him a hug I would be especially grateful!!
And another favor to ask-will someone please hunt down the evil person has has the voo-doo dolls of my family and bring them to me???? Don't burn them, or throw them away-just bring them to me so I can put them in a nice, safe location.......argh!!!!
Getting ready to hit my button and go to la-la land. Will update tomorrow!
thanks again everyone!
k
Friday, March 2, 2012
Thursday, March 1, 2012
Let's do this!
Tomorrow is the big day. I'm getting ready for bed, gonna shower with my Hibiclens, shave, paint my toenails(don't kid yourself-you all did this before babies, surgery, etc.) pry off the toe ring I've had on for 12 years and the diamond studs from my kids that stay in my ears always and forever, put away my wedding ring and the necklace of my husband's badge that is never not around my neck, then climb into bed with my husband-and probably not be able to sleep.
But wait-it's too early to go to bed at 10pm, I get to eat and drink until midnight, and I am NOT giving up a big glass of tea at 11:59pm cause I know I'm gonna wake up terribly thirsty in the morning. Or at 3am, and because I know I can't have anything to drink, I'll be parched!
We stayed busy today though, and I only slept for 5 hours after I got off work this morning, so sleep should come pretty easy.
My appointment with Dr Sheehan was filled with wonderful news-my BRCA gene testing is negative! Rock on! This is great, fantastic, fabulous news. BRCA1 and BRCA2 are the genes that if carry a mutation can 'pre-dispose' a person to breast, ovarian and sometimes even colon cancer. So what that basically means since mine was negative is that I'm just one of the lucky ones who got breast cancer by random selection of suckiness-not because of some mutant gene. (it really means a lot more than that-but abridged version for now) There is still some research to do on it as far as my Mom is concerned-as she could be a carrier-but we know that even if she is, I didn't inherit the gene, therefore neither will Hailey! Can I get a whoo-hoo here??? WHOO-HOO!!
I want to again thank all the wonderful people in my life, the gifts and cards have been showing up on my doorstep and in my mailbox all week. They are amazing and each one is very special to me. The words written to me make my heart warm, it's hard for me to swallow as I read each facebook post, card and email-are those nice things they are saying really about me?? I am blessed, blessed, blessed, and very humbled.
I have to arrive at the hospital at 10:15 for a surgery time of 1:15pm. My crazy, dear friend Shannon that I work with and one of my Radiologists explained to me how the Sentinel Node Biospy takes place-kinda weird-will explain later. And the Radiologist who did my initial biopsy-Dr Feiock has agreed to do it since he and my boob already have a rapport going. And like one of the other Rads said-'they all don't need to see my titties'!! Then I'm gonna happily take my sleepy drugs and off we will go! (and off they will go!)
Brian or my Mom or my friends Andrea or Carissa will update on fb-but just the basics-in surgery, done, doing well, in recovery, etc. Since I will be out of it for a while, there will be no other info other than that shared until I wake up and hear it myself. Once I have processed it, I will share it with all of you myself, and in my own words. Thank you for respecting and understanding that.
Someone will also post where my room is, and you are welcome to come visit-however I will warn you that I really, really like anesthesia and last time called my husband 'Brindy' afterwards and fell asleep sitting up straight with a hot tea in my hand....but feel free to come by.
However, if you're one of those who thinks you might look at me and cry-stay home. I know myself very well, and in knowing that, I know the hardest thing for me is going to be taking the first look at my chest after surgery. I am tearing up right now writing about it. So, if you are one of those people-and I know some of you are-I love you, I respect you, and I think no less of you-just don't come up to my room and look at me with pity and cry. Email me.
and you bitches in CT-chocolate shake. Seasons. that's all I'm sayin.
k
But wait-it's too early to go to bed at 10pm, I get to eat and drink until midnight, and I am NOT giving up a big glass of tea at 11:59pm cause I know I'm gonna wake up terribly thirsty in the morning. Or at 3am, and because I know I can't have anything to drink, I'll be parched!
We stayed busy today though, and I only slept for 5 hours after I got off work this morning, so sleep should come pretty easy.
My appointment with Dr Sheehan was filled with wonderful news-my BRCA gene testing is negative! Rock on! This is great, fantastic, fabulous news. BRCA1 and BRCA2 are the genes that if carry a mutation can 'pre-dispose' a person to breast, ovarian and sometimes even colon cancer. So what that basically means since mine was negative is that I'm just one of the lucky ones who got breast cancer by random selection of suckiness-not because of some mutant gene. (it really means a lot more than that-but abridged version for now) There is still some research to do on it as far as my Mom is concerned-as she could be a carrier-but we know that even if she is, I didn't inherit the gene, therefore neither will Hailey! Can I get a whoo-hoo here??? WHOO-HOO!!
I want to again thank all the wonderful people in my life, the gifts and cards have been showing up on my doorstep and in my mailbox all week. They are amazing and each one is very special to me. The words written to me make my heart warm, it's hard for me to swallow as I read each facebook post, card and email-are those nice things they are saying really about me?? I am blessed, blessed, blessed, and very humbled.
I have to arrive at the hospital at 10:15 for a surgery time of 1:15pm. My crazy, dear friend Shannon that I work with and one of my Radiologists explained to me how the Sentinel Node Biospy takes place-kinda weird-will explain later. And the Radiologist who did my initial biopsy-Dr Feiock has agreed to do it since he and my boob already have a rapport going. And like one of the other Rads said-'they all don't need to see my titties'!! Then I'm gonna happily take my sleepy drugs and off we will go! (and off they will go!)
Brian or my Mom or my friends Andrea or Carissa will update on fb-but just the basics-in surgery, done, doing well, in recovery, etc. Since I will be out of it for a while, there will be no other info other than that shared until I wake up and hear it myself. Once I have processed it, I will share it with all of you myself, and in my own words. Thank you for respecting and understanding that.
Someone will also post where my room is, and you are welcome to come visit-however I will warn you that I really, really like anesthesia and last time called my husband 'Brindy' afterwards and fell asleep sitting up straight with a hot tea in my hand....but feel free to come by.
However, if you're one of those who thinks you might look at me and cry-stay home. I know myself very well, and in knowing that, I know the hardest thing for me is going to be taking the first look at my chest after surgery. I am tearing up right now writing about it. So, if you are one of those people-and I know some of you are-I love you, I respect you, and I think no less of you-just don't come up to my room and look at me with pity and cry. Email me.
and you bitches in CT-chocolate shake. Seasons. that's all I'm sayin.
k
Wednesday, February 29, 2012
I love my people
For those Grey's Anatomy fans out there-you will understand what this title means.
Christina is Mer's 'person'
Owen wants to be Christina's 'person'
Derek knows Mer is Christina's 'person'
I'm blessed and lucky that I don't just have a 'person', I have 'people'. Lots of 'people'.
And they are pretty ahhhhmazing!
GNO BBB was last Saturday, or otherwise known as Girl's Night Out Bye-Bye Boobies.
Party bus rented.
Houlihan's reserved.
Tables at Tanner's saved so we could dance to the Cherry Bombs Band.
30+ amazing women showed up to help celebrate me starting this journey of kicking this cancer's ass.
A night I needed. And not just me, my friends needed it too. My family needed it.
So many of these women I haven't seen in person since news of my diagnosis-and so many of them didn't know what to say, or how to say it. Well, they all said it fabulously. I am surrounded by people who love and support me, and will help me through this.
A night of laughter, pictures, dancing, drinks, more dancing, shots, hugs, lots of hugs, and even some tears. No doubt I wouldn't make it through the night without a tear or two.
And the thoughtful gifts-3 months of housecleaning, gas gift card, Jimmy John's gift card (tuna on wheat please-with the sprouts), pink jammies, slippers and pink fuzzy socks, a gorgeous pink bag filled with goodies like fingernail bling, and playing cards and hand lotion-and embroidered with the word "strength" on it, a pedicure with an awesome pink color, oh, and pink boxing gloves!
The offers of help at every turn-of which I promise I will let people help!! Pinky swear!!
A special thanks to Andrea Phillips and Michala Stoker for setting it up-I love you girls!!!
And for all of you who attended-I love you all so much, and am blessed to call you my friends-and family! New and old-it means the world to me that you came to support me.
Oh, and did I mention I went home with $147 in cash in my jeans pocket? Amazing how many dudes will shell out $20 to cop a feel on a chick about to lose both breasts. Hey, I can live with that! No ramen noodles in my house this week!
The surgery day is getting close-Friday morning is not too far off. The reality of everything is beginning to settle in. Though oddly enough, most would expect to be anxious, nervous, scared, unsure. And though I am all of those, I am mostly calm. Ready to get this started. To get this done, to put this bump in the road of my crazy life behind me.
I opened a letter from my insurance company on Saturday morning. An approval letter for my prophylactic left mastectomy. Those black typed words brought me to my knees. The tears streamed down my face while I was driving-yes, I opened and read my mail while driving-and with kids in the car-not 'Mom of the year' type behavior I know-but nonetheless-absolutely floored me.
To see the approval in black and white as if words on a menu, not caring, no feeling.
Just words, just an OK, a no big deal.
Not even a 'sorry-this sucks-but hey, good for you! We are happy to pay for your prophylactic surgery to help stop your cancer in it's tracks in your body.'
Just APPROVED.
Weird how that, of all things, made me cry.
And, like I said before, I had my hot mess crying episode. Fortunately I was at home, in bed, with my husband-before his surgery, watching Spartacus of all things. I think someone got their arm chopped off by a big sword, and as blood sprayed across the scene, I lost it. The mouth breathing, pitiful, can't catch your breath sobs were out before I could stop them. Not that I tried. My husband informed me he had been waiting for that moment, and I'm glad he was there.
Now the crying is done, and it's time to put on those pink boxing gloves and get warmed up. In the words of a great friend, and my personal trainer last year-time to GET IT!!
I see Dr Sheehan at the Cancer Center on Thursday, and should have the BRCA testing back, and maybe some more information. I will let you all know when I do.
Thanks again for being my people.
Christina is Mer's 'person'
Owen wants to be Christina's 'person'
Derek knows Mer is Christina's 'person'
I'm blessed and lucky that I don't just have a 'person', I have 'people'. Lots of 'people'.
And they are pretty ahhhhmazing!
GNO BBB was last Saturday, or otherwise known as Girl's Night Out Bye-Bye Boobies.
Party bus rented.
Houlihan's reserved.
Tables at Tanner's saved so we could dance to the Cherry Bombs Band.
30+ amazing women showed up to help celebrate me starting this journey of kicking this cancer's ass.
A night I needed. And not just me, my friends needed it too. My family needed it.
So many of these women I haven't seen in person since news of my diagnosis-and so many of them didn't know what to say, or how to say it. Well, they all said it fabulously. I am surrounded by people who love and support me, and will help me through this.
A night of laughter, pictures, dancing, drinks, more dancing, shots, hugs, lots of hugs, and even some tears. No doubt I wouldn't make it through the night without a tear or two.
And the thoughtful gifts-3 months of housecleaning, gas gift card, Jimmy John's gift card (tuna on wheat please-with the sprouts), pink jammies, slippers and pink fuzzy socks, a gorgeous pink bag filled with goodies like fingernail bling, and playing cards and hand lotion-and embroidered with the word "strength" on it, a pedicure with an awesome pink color, oh, and pink boxing gloves!
The offers of help at every turn-of which I promise I will let people help!! Pinky swear!!
A special thanks to Andrea Phillips and Michala Stoker for setting it up-I love you girls!!!
And for all of you who attended-I love you all so much, and am blessed to call you my friends-and family! New and old-it means the world to me that you came to support me.
Oh, and did I mention I went home with $147 in cash in my jeans pocket? Amazing how many dudes will shell out $20 to cop a feel on a chick about to lose both breasts. Hey, I can live with that! No ramen noodles in my house this week!
| some pretty fabulous women in this picture!!! |
The surgery day is getting close-Friday morning is not too far off. The reality of everything is beginning to settle in. Though oddly enough, most would expect to be anxious, nervous, scared, unsure. And though I am all of those, I am mostly calm. Ready to get this started. To get this done, to put this bump in the road of my crazy life behind me.
I opened a letter from my insurance company on Saturday morning. An approval letter for my prophylactic left mastectomy. Those black typed words brought me to my knees. The tears streamed down my face while I was driving-yes, I opened and read my mail while driving-and with kids in the car-not 'Mom of the year' type behavior I know-but nonetheless-absolutely floored me.
To see the approval in black and white as if words on a menu, not caring, no feeling.
Just words, just an OK, a no big deal.
Not even a 'sorry-this sucks-but hey, good for you! We are happy to pay for your prophylactic surgery to help stop your cancer in it's tracks in your body.'
Just APPROVED.
Weird how that, of all things, made me cry.
And, like I said before, I had my hot mess crying episode. Fortunately I was at home, in bed, with my husband-before his surgery, watching Spartacus of all things. I think someone got their arm chopped off by a big sword, and as blood sprayed across the scene, I lost it. The mouth breathing, pitiful, can't catch your breath sobs were out before I could stop them. Not that I tried. My husband informed me he had been waiting for that moment, and I'm glad he was there.
Now the crying is done, and it's time to put on those pink boxing gloves and get warmed up. In the words of a great friend, and my personal trainer last year-time to GET IT!!
I see Dr Sheehan at the Cancer Center on Thursday, and should have the BRCA testing back, and maybe some more information. I will let you all know when I do.
Thanks again for being my people.
Friday, February 17, 2012
Plans in motion
I've met with more doctors in the last week than I have in two years, and been given more info than my tiny little brain can make sense of. But I think we all have a plan, and it's being set in motion as of today. NOTE; this post is full of medical terminology and hoopla and I am feeling the need to be
'teachy'. If not interested skip to bottom for the synopsis!
Met with Dr Sirridge at the KC Cancer Center today and he was almost ecstatic about some of the pathology that has come back since my meeting with Dr Failing. I will try to explain it as best I can-
~Because there were two separate masses in one breast, it is still called Invasive Ductal Carcinoma-but is considered Multicentric Breast CA (CA is cancer). The grade 2 from the previous post is basically the rate at which the cancer cells grow-they grow at a 1-slow rate, 2-medium rate, or 3-aggressive rate. Mine being is a 2 is middle of the road-just like me, the middle child!
~My tumors are 100% Estrogen receptive and 90% Progesterone receptive or ER/PR+, and this is fantastic-means they will respond fabulously to hormone therapy-namely Tamoxifen. This treatment is done towards the end of chemo(if needed) and for 5 years from start to help against recurrence. Cheers here!
~The tumors were HER2/neu Negative. This also is good. This is where Dr Sirridge got really excited! HER2/neu is human epidermal growth factor receptor 2. This is a gene that sometimes overproduces the HER2 protein, thus making the breast cancer cells divide and grow at a very rapid rate. Mine being negative means it is NOT an aggressive form of breast cancer and I will NOT need Herceptin treatment. Little cheers here!
So my full diagnosis is Multicentric Invasive Ductal Carcinoma grade 2, ER/PR+, HER2/neu negative. And with these types of cancers, the survival rate at 10 years is 85-90%! Again-little cheers here!
Now is where it gets tricky. As if all of that above wasn't, right???
How do we get started?
~Lumpectomy vs. Mastectomy. Means take part of boob with tumors or all of the boob in laymen's terms. Lumpectomy in my case (because of two separate areas-pretty far apart) would mean taking about 1/3 of the right breast and radiation therapy, but still keep boob on body. Mastectomy means taking all of the right breast, leaving tissue on the chest wall to heal.
Many of you don't know I went to Radiation Therapy school a long, long time ago-though I never have worked in the field. And I saw lots of radiated boobs, post lumpectomy. In 1993 I knew I would NEVER opt for lumpectomy and radiation having seen what I did-and I still feel that way. Add on top of that the risk of recurrence and then dealing with a mastectomy and breast reconstruction to a radiated chest wall. YES, I am an X-Ray Tech, and yes, I LOVE Radiation. Diagnostic-not Therapeutic. So as you can probably guess-lumpectomy is out. Mastectomy is in.
~Right only (unilateral) or both (bilateral)? Well, since I am going to be getting a new boob on the right for sure someday-I may look kinda funny with a gorgeous, perky DD next to my tiny, little, nursing destroyed, barely a B. Just kidding. For safety's sake against recurrence-they both gotta go.
~Part of the mastectomy will entail a Sentinel Node Biopsy. This occurs during the surgery where they check to see if any of the lymph nodes in my right axilla (arm pit) are affected. This is where the staging will come from, and thus help determine the need (or not) for chemotherapy after surgery.
With a bilateral mastectomy-they take both breasts, but only do the node biopsy on the affected side-or the right. If the nodes are positive for cancer, the Surgeon will do a node dissection and take them out. Surgery takes about 2 hours-but most of this time is spent waiting on the Pathologist to let the Surgeon know whether or not the nodes are affected. Then I spend one night in the hospital and go home the next day. Yep, you read that right-ONE NIGHT. This is the standard of care in the industry, I'm not being cheap :) Not sure how I feel about that yet, I will let you know post-op day one.....
In talking to Dr Sirridge today, we talked about testing me for BRCA1, and BRCA2, or the human genes known as tumor suppressors. If I carry either of these genes AND if there is a mutation on
it, it can mean an increased risk of cancer. And also mean a greater risk for recurrence. This is not necessary for treatment, but for me, and my daughter and my sisters and all my female cousins-it is. A positive BRCA1 or 2 can mean an increased risk of cancer for those considered my 'first degree relatives'-all those gals I just mentioned whom I love so much. Now me being positive would not mean automatically that they have it, and would be up to them to decide if they wanted the testing. Catch? It's expensive as hell. About $3500. Most insurances pay all but about $400. I guess we will find out Monday if it's ramen noodles in the Rawley house next week or not!?!!? JK-they are kind enough to set us up on a payment plan....of course you are! Gee, thanks. With all that's going on with our insurance right now, kinda makes me nervous-my PD and FD friends will get that-but it's a whole 'nother post and one that I get pretty pissy about.
Dr Sirridge talked to Dr Maureen Sheehan in regards to the genetic testing because he says she is the 'gene guru'. He wanted her opinion as to
1-we do the testing at all (yes-blood drawn and being sent out)
2-we wait for results to do surgery and type of surgery if positive (yes)
#2 is a yes because even though I am opting for a bilateral mastectomy-you are asking what the hell else could he do to me in surgery? Well, if positive, I could need a port-a-cath placed for subsequent chemotherapy, and I would rather get the most bang for my buck-meaning one surgery, get it all done. So, we are waiting for those results.
Now for the best news, or silver lining, if there ever could be in a cancer diagnosis.
With my hair color, eye color and body habitus, my chances for a rockin' fabulous breast reconstruction are awesome!! In a nutshell (these are Dr S's words-not mine) the bone thin skinny, blond haired, blue-eyed women do not fare as well in chest wall healing and future reconstruction as my 'type'.
Basically, because I have a little extra cushion on my butt and thighs, the plastic surgeon can suck it out and put it where my new boobs will go with or w/o an implant! Rock the freak on! Doesn't mean fat is good, or that I have no intention of taking off all this excess weight I have been trying to for years. BUT, since we all know as women that in losing weight the last places to go are always the butt and thighs, and towards the end of this journey I'm sure there will still be a little there-and it can go right on up top to help out the new sisters! woo-hoo!
As it stands, I will have a bilateral mastectomy with right side sentinel node biopsy on Friday March 2nd. Everything else will be determined from there according to the plan outlined above. I like a plan, I need a plan, and I am happy with this plan. Please know that these choices were made by me and Brian, and are what work best for our life. I support any decision a person facing cancer makes that works for them. Just because I have chosen this particular route of treatment does not make it better or more curable than any that others have chosen.
Don't get me wrong, if I could go to Seattle Grace Mercy West and have the expertise of Dr's Bailey, Yang, Grey, Hunt, McDreamy and McSteamy, Avery and Karev, I'd be on the first plane. Then off to Oceanside Wellness group for some 'whole body healing' from Dr's Bennett, Wilder, Turner, King and Wallace, then sip some wine on Addison Montgomery's Malibu beach front property with her and Amelia Shepherd, I would be there. But since that is TV, and this is REAL, I'll be happy with with the fantastic care from my friends at NKCH-who have already taken such amazing care of me, and my new friends at the KC Cancer Center! (I'm kind of a Grey's/Private Practice freak in case you couldn't tell)
Ugh, did I leave anything out? I have no idea. This is all so surreal. One minute I think I can handle this and the next I want to crawl under my covers and go to bed, hoping to wake up and realize this is just a bad dream.
But it's not a bad dream, and waking up tomorrow means I have another day to fight this terrible disease that kills 40,000 women annually.
And it means that I won't be one of those 40,000.
Not if I can help it.
And I sure can.
| what my breast cancer looks like-can you see it? amazing something so small can be so devastating. |
I've met with more doctors in the last week than I have in two years, and been given more info than my tiny little brain can make sense of. But I think we all have a plan, and it's being set in motion as of today. NOTE; this post is full of medical terminology and hoopla and I am feeling the need to be
'teachy'. If not interested skip to bottom for the synopsis!
Met with Dr Sirridge at the KC Cancer Center today and he was almost ecstatic about some of the pathology that has come back since my meeting with Dr Failing. I will try to explain it as best I can-
~Because there were two separate masses in one breast, it is still called Invasive Ductal Carcinoma-but is considered Multicentric Breast CA (CA is cancer). The grade 2 from the previous post is basically the rate at which the cancer cells grow-they grow at a 1-slow rate, 2-medium rate, or 3-aggressive rate. Mine being is a 2 is middle of the road-just like me, the middle child!
~My tumors are 100% Estrogen receptive and 90% Progesterone receptive or ER/PR+, and this is fantastic-means they will respond fabulously to hormone therapy-namely Tamoxifen. This treatment is done towards the end of chemo(if needed) and for 5 years from start to help against recurrence. Cheers here!
~The tumors were HER2/neu Negative. This also is good. This is where Dr Sirridge got really excited! HER2/neu is human epidermal growth factor receptor 2. This is a gene that sometimes overproduces the HER2 protein, thus making the breast cancer cells divide and grow at a very rapid rate. Mine being negative means it is NOT an aggressive form of breast cancer and I will NOT need Herceptin treatment. Little cheers here!
So my full diagnosis is Multicentric Invasive Ductal Carcinoma grade 2, ER/PR+, HER2/neu negative. And with these types of cancers, the survival rate at 10 years is 85-90%! Again-little cheers here!
Now is where it gets tricky. As if all of that above wasn't, right???
How do we get started?
~Lumpectomy vs. Mastectomy. Means take part of boob with tumors or all of the boob in laymen's terms. Lumpectomy in my case (because of two separate areas-pretty far apart) would mean taking about 1/3 of the right breast and radiation therapy, but still keep boob on body. Mastectomy means taking all of the right breast, leaving tissue on the chest wall to heal.
Many of you don't know I went to Radiation Therapy school a long, long time ago-though I never have worked in the field. And I saw lots of radiated boobs, post lumpectomy. In 1993 I knew I would NEVER opt for lumpectomy and radiation having seen what I did-and I still feel that way. Add on top of that the risk of recurrence and then dealing with a mastectomy and breast reconstruction to a radiated chest wall. YES, I am an X-Ray Tech, and yes, I LOVE Radiation. Diagnostic-not Therapeutic. So as you can probably guess-lumpectomy is out. Mastectomy is in.
~Right only (unilateral) or both (bilateral)? Well, since I am going to be getting a new boob on the right for sure someday-I may look kinda funny with a gorgeous, perky DD next to my tiny, little, nursing destroyed, barely a B. Just kidding. For safety's sake against recurrence-they both gotta go.
~Part of the mastectomy will entail a Sentinel Node Biopsy. This occurs during the surgery where they check to see if any of the lymph nodes in my right axilla (arm pit) are affected. This is where the staging will come from, and thus help determine the need (or not) for chemotherapy after surgery.
With a bilateral mastectomy-they take both breasts, but only do the node biopsy on the affected side-or the right. If the nodes are positive for cancer, the Surgeon will do a node dissection and take them out. Surgery takes about 2 hours-but most of this time is spent waiting on the Pathologist to let the Surgeon know whether or not the nodes are affected. Then I spend one night in the hospital and go home the next day. Yep, you read that right-ONE NIGHT. This is the standard of care in the industry, I'm not being cheap :) Not sure how I feel about that yet, I will let you know post-op day one.....
In talking to Dr Sirridge today, we talked about testing me for BRCA1, and BRCA2, or the human genes known as tumor suppressors. If I carry either of these genes AND if there is a mutation on
it, it can mean an increased risk of cancer. And also mean a greater risk for recurrence. This is not necessary for treatment, but for me, and my daughter and my sisters and all my female cousins-it is. A positive BRCA1 or 2 can mean an increased risk of cancer for those considered my 'first degree relatives'-all those gals I just mentioned whom I love so much. Now me being positive would not mean automatically that they have it, and would be up to them to decide if they wanted the testing. Catch? It's expensive as hell. About $3500. Most insurances pay all but about $400. I guess we will find out Monday if it's ramen noodles in the Rawley house next week or not!?!!? JK-they are kind enough to set us up on a payment plan....of course you are! Gee, thanks. With all that's going on with our insurance right now, kinda makes me nervous-my PD and FD friends will get that-but it's a whole 'nother post and one that I get pretty pissy about.
Dr Sirridge talked to Dr Maureen Sheehan in regards to the genetic testing because he says she is the 'gene guru'. He wanted her opinion as to
1-we do the testing at all (yes-blood drawn and being sent out)
2-we wait for results to do surgery and type of surgery if positive (yes)
#2 is a yes because even though I am opting for a bilateral mastectomy-you are asking what the hell else could he do to me in surgery? Well, if positive, I could need a port-a-cath placed for subsequent chemotherapy, and I would rather get the most bang for my buck-meaning one surgery, get it all done. So, we are waiting for those results.
Now for the best news, or silver lining, if there ever could be in a cancer diagnosis.
With my hair color, eye color and body habitus, my chances for a rockin' fabulous breast reconstruction are awesome!! In a nutshell (these are Dr S's words-not mine) the bone thin skinny, blond haired, blue-eyed women do not fare as well in chest wall healing and future reconstruction as my 'type'.
Basically, because I have a little extra cushion on my butt and thighs, the plastic surgeon can suck it out and put it where my new boobs will go with or w/o an implant! Rock the freak on! Doesn't mean fat is good, or that I have no intention of taking off all this excess weight I have been trying to for years. BUT, since we all know as women that in losing weight the last places to go are always the butt and thighs, and towards the end of this journey I'm sure there will still be a little there-and it can go right on up top to help out the new sisters! woo-hoo!
As it stands, I will have a bilateral mastectomy with right side sentinel node biopsy on Friday March 2nd. Everything else will be determined from there according to the plan outlined above. I like a plan, I need a plan, and I am happy with this plan. Please know that these choices were made by me and Brian, and are what work best for our life. I support any decision a person facing cancer makes that works for them. Just because I have chosen this particular route of treatment does not make it better or more curable than any that others have chosen.
Don't get me wrong, if I could go to Seattle Grace Mercy West and have the expertise of Dr's Bailey, Yang, Grey, Hunt, McDreamy and McSteamy, Avery and Karev, I'd be on the first plane. Then off to Oceanside Wellness group for some 'whole body healing' from Dr's Bennett, Wilder, Turner, King and Wallace, then sip some wine on Addison Montgomery's Malibu beach front property with her and Amelia Shepherd, I would be there. But since that is TV, and this is REAL, I'll be happy with with the fantastic care from my friends at NKCH-who have already taken such amazing care of me, and my new friends at the KC Cancer Center! (I'm kind of a Grey's/Private Practice freak in case you couldn't tell)
Ugh, did I leave anything out? I have no idea. This is all so surreal. One minute I think I can handle this and the next I want to crawl under my covers and go to bed, hoping to wake up and realize this is just a bad dream.
But it's not a bad dream, and waking up tomorrow means I have another day to fight this terrible disease that kills 40,000 women annually.
And it means that I won't be one of those 40,000.
Not if I can help it.
And I sure can.
Tuesday, February 14, 2012
And the results are in....
Invasive Ductal Carcinoma In Situ Grade 2.
Those words just sound ugly, don't they?
Ductal Carcinoma-a cancer that starts in the milk ducts of the breast.
In Situ- means "in it's original place"
So, if you put those together, it means milk duct breast cancer still contained within the milk duct.
Well, you'd think so. BUT, when you throw that word invasive in there, it changes the whole ball game.
Invasive means just what it sounds like-invading other areas than the milk duct.
Grade 2-will have to wait for an oncologist to explain this term. I am finding on my own that it basically means it has not spread to any other organs, but other than that not much info as to whether it is the same as 'staging'.
This type of cancer accounts for 65-85% of all breast cancers-very common.
There were two areas biopsied, and both have the same pathology. Though we don't know yet if it has invaded any other areas of the breast or axilla (arm pit) the potential is definitely there.
We will be meeting with Dr Failing and an Oncologist from the Cancer Center either Wednesday of this week, or next Monday and be presented with all potential treatment options. From my own research, it looks like the typical course is surgery-whether lumectomy or mastectomy, chemo, hormone therapy based upon hormone receptors this cancer may respond to, and radiation therapy. Any/all combinations of those mentioned are possible options.
I'm at a slight loss for words here-who ever whoulda thunk that about me??? But honestly, I have been googling myself insane looking for doctor's names here in KC that specialize in breast cancer treatment and am having a hard time finding someone that jumps right out at me. I am going to hit up my personal doc and my ob/gyn for suggestions, as well as the fabulous Rads I work for.
Where would you take your wife? Cause that's where I want to go.
Otherwise, I am doing well. I still feel perfectly fine, other than a yellowing, green, black and blue bruised up boob that still hurts a little. I threw myself a little pity party this weekend, complete with gummy bears, Coke, Twizzlers, Hershey kisses, and lots of snuggles from the bald kid. Still no hot mess crying episode-I'm sure that will happen when I least expect it-like in line at the grocery store, complete with splotchy red face and running nose. Ought to be a sight when that does happen!
We are approaching this like we do everything-It is what it is. Doesn't mean I won't get mad, cry, yell or throw stuff. But in the meantime I am going to be researching diet and at least get to walking every day. A clear mind has got to help, and working out always helps clear my mind!
The kids are taking it very well-they have had so much crap hurled at them for so long, it really is just one more thing to deal with. But seriously-my kids are wise beyond their years, and I long for that youthful innocence for them most kids have and take for granted. It's just not fair. But, hey, neither is life, and what doesn't kill you....
Ethan was diagnosed with pneumonia and pulmonary edema last week. We talked them out of admitting him and instead got them to let us take him home with a dose of steroids, antibiotics, more albuterol and the promise we know how to get him back to Mercy if he needed to go in! He perked up over the weekend, and I'm glad-cause he was wearing me out at home last week!
Brian is scheduled to have surgery on his shoulder next week-we will see what this week brings for us and go from there. If they want to move as quickly with me as we have done so far, I may be the one on the operating table.
Hailey has a big volleyball tournament this weekend-200+ teams at Bartle Hall! That will be fun and mind occupying for me! Parker will have a basketball game on Saturday-his last one was their best by far-only lost by 6 points!
Please don't be afraid to call us, text us, email us, whatever. I know you don't know what to say. Hell, I don't know what to say! But your voice and words of support will help all of us through this! I have always said we have fabulous family and friends, well, we are probably going to need you all now more than ever. And though we are famous for not asking people for help-I'm sure we will need to, and I promise we will!
Have a very Happy Valentine's Day! Tell the special people in your life what they mean to you and hug them extra long today. And I have not been very good at bringing about awareness to Congenital Heart Defects this month. But 1 in 100 kids are born with a CHD, and too many don't live to their 2nd birthday. We are blessed and lucky to still have the bald kid in our lives, as so many parents I know are celebrating this day day with bittersweet memories of a child lost too soon.
I will update more as we know it. In the meantime I need to find some pink boxing gloves and get to kicking some cancer ass....
love and hugs,
K
Those words just sound ugly, don't they?
Ductal Carcinoma-a cancer that starts in the milk ducts of the breast.
In Situ- means "in it's original place"
So, if you put those together, it means milk duct breast cancer still contained within the milk duct.
Well, you'd think so. BUT, when you throw that word invasive in there, it changes the whole ball game.
Invasive means just what it sounds like-invading other areas than the milk duct.
Grade 2-will have to wait for an oncologist to explain this term. I am finding on my own that it basically means it has not spread to any other organs, but other than that not much info as to whether it is the same as 'staging'.
This type of cancer accounts for 65-85% of all breast cancers-very common.
There were two areas biopsied, and both have the same pathology. Though we don't know yet if it has invaded any other areas of the breast or axilla (arm pit) the potential is definitely there.
We will be meeting with Dr Failing and an Oncologist from the Cancer Center either Wednesday of this week, or next Monday and be presented with all potential treatment options. From my own research, it looks like the typical course is surgery-whether lumectomy or mastectomy, chemo, hormone therapy based upon hormone receptors this cancer may respond to, and radiation therapy. Any/all combinations of those mentioned are possible options.
I'm at a slight loss for words here-who ever whoulda thunk that about me??? But honestly, I have been googling myself insane looking for doctor's names here in KC that specialize in breast cancer treatment and am having a hard time finding someone that jumps right out at me. I am going to hit up my personal doc and my ob/gyn for suggestions, as well as the fabulous Rads I work for.
Where would you take your wife? Cause that's where I want to go.
Otherwise, I am doing well. I still feel perfectly fine, other than a yellowing, green, black and blue bruised up boob that still hurts a little. I threw myself a little pity party this weekend, complete with gummy bears, Coke, Twizzlers, Hershey kisses, and lots of snuggles from the bald kid. Still no hot mess crying episode-I'm sure that will happen when I least expect it-like in line at the grocery store, complete with splotchy red face and running nose. Ought to be a sight when that does happen!
We are approaching this like we do everything-It is what it is. Doesn't mean I won't get mad, cry, yell or throw stuff. But in the meantime I am going to be researching diet and at least get to walking every day. A clear mind has got to help, and working out always helps clear my mind!
The kids are taking it very well-they have had so much crap hurled at them for so long, it really is just one more thing to deal with. But seriously-my kids are wise beyond their years, and I long for that youthful innocence for them most kids have and take for granted. It's just not fair. But, hey, neither is life, and what doesn't kill you....
Ethan was diagnosed with pneumonia and pulmonary edema last week. We talked them out of admitting him and instead got them to let us take him home with a dose of steroids, antibiotics, more albuterol and the promise we know how to get him back to Mercy if he needed to go in! He perked up over the weekend, and I'm glad-cause he was wearing me out at home last week!
Brian is scheduled to have surgery on his shoulder next week-we will see what this week brings for us and go from there. If they want to move as quickly with me as we have done so far, I may be the one on the operating table.
Hailey has a big volleyball tournament this weekend-200+ teams at Bartle Hall! That will be fun and mind occupying for me! Parker will have a basketball game on Saturday-his last one was their best by far-only lost by 6 points!
Please don't be afraid to call us, text us, email us, whatever. I know you don't know what to say. Hell, I don't know what to say! But your voice and words of support will help all of us through this! I have always said we have fabulous family and friends, well, we are probably going to need you all now more than ever. And though we are famous for not asking people for help-I'm sure we will need to, and I promise we will!
Have a very Happy Valentine's Day! Tell the special people in your life what they mean to you and hug them extra long today. And I have not been very good at bringing about awareness to Congenital Heart Defects this month. But 1 in 100 kids are born with a CHD, and too many don't live to their 2nd birthday. We are blessed and lucky to still have the bald kid in our lives, as so many parents I know are celebrating this day day with bittersweet memories of a child lost too soon.
I will update more as we know it. In the meantime I need to find some pink boxing gloves and get to kicking some cancer ass....
love and hugs,
K
Thursday, February 9, 2012
Only the nice people get cancer......
Those of you who know me know I'm pretty candid and straight forward about stuff-so I won't be any other way this time. If you follow me on FB, then I'm sure you are wondering what my latest post meant regarding the crummy weather in our house.
Well, like I have said for years-if the Rawley's didn't have bad luck, we'd have no luck at all-and this time is no different. I found out on Weds this week during a normal, yearly, run of the mill, annual appointment for my boob squeeze that I have a 9mm mass in my right breast.
Mass? You ask, yep, fuzzy borders on mammo and ultrasound, taller than wide, not there on last mamm, calcifications within, not cystic, mass.
Yep. a mass.
Mass is really a bad word-it should more accurately be called a gut wrenching- life threatening- tear jerking- question everything you ever knew to be right in the world reality check. Cause all that and more goes through your head when you see the Radiologist circled (in bright red ink, no less)
#5. Highly suspicious for breast cancer. Biopsy needed.
Cancer? Only nice people get cancer. Come on, we say it all the time in healthcare-we scan a 'nice patient'-kind, clean, uses their manners, thanks us, is humble, we just know they are a nice person. That's the person who gets cancer-not me, not the evil, mean, bitchy person I am. I am not a 'nice person'. Doesn't cancer know I'm a bitch????
Long, long, long story short-Dr Malley at Imaging for Women and all the staff I encountered there were fabulous. Kind, gentle, honest. Yet still couldn't hardly look me in the eye when I left with my films, numb, trying to fight back the tears with smiles and thank you's.
Biopsy needed. This week said Dr. Malley. Sooner than later. Use your resources at the hospital.
I went to work last night and took my films with me. One of my favorite Rads was working-and I wanted his opinion. I trust him, and it was exactly what I already knew.
Biopsy needed. Soon. Can probably do under sono. So Sorry you're dealing with this. Let me know if I can help expedite anything.
Brian and I met with Surgeon Dr Failing today. Nice man, no BS, cut to the chase, honest and straightforward like I like.
It's cancer. I have pretty much no doubt. Let's get this out and move forward quickly.
Is tomorrow quick enough? Yep-unless you can do it right now.
Anything smaller than 2cm is considered 'small'.
Yours is half that.
It's a really early catch.
Cancers this small have a 90% cure rate.
Sono guided biopsy for me on Friday Feb 10th.
The Rad will numb it, put a needle in it, take out a few samples, put a titanium clip in, do another mammo, send to pathology, wait.
Wait. A word kind of like Mass.
Have I thought about a course of treatment? Do you know me? Of course I have.
1. BRCA gene testing-I have a family history of breast cancer. I want to know if I carry the gene. Some people don't. I do. Knowledge is power. This is the power I want for my daughter, my sisters, my female cousins. Need a little light reading about this: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
2. Positive BRCA gene? Bilateral mastectomy, hysterectomy. I can't afford to have something come back in 5, 10, 15 years. I have a husband and kids and one of which is totally dependent on ME. Get it all out now.
3. Kick this cancer's ass.
cause cancer may not have known I was a bitch before. but it sure will now.
Well, like I have said for years-if the Rawley's didn't have bad luck, we'd have no luck at all-and this time is no different. I found out on Weds this week during a normal, yearly, run of the mill, annual appointment for my boob squeeze that I have a 9mm mass in my right breast.
Mass? You ask, yep, fuzzy borders on mammo and ultrasound, taller than wide, not there on last mamm, calcifications within, not cystic, mass.
Yep. a mass.
Mass is really a bad word-it should more accurately be called a gut wrenching- life threatening- tear jerking- question everything you ever knew to be right in the world reality check. Cause all that and more goes through your head when you see the Radiologist circled (in bright red ink, no less)
#5. Highly suspicious for breast cancer. Biopsy needed.
Cancer? Only nice people get cancer. Come on, we say it all the time in healthcare-we scan a 'nice patient'-kind, clean, uses their manners, thanks us, is humble, we just know they are a nice person. That's the person who gets cancer-not me, not the evil, mean, bitchy person I am. I am not a 'nice person'. Doesn't cancer know I'm a bitch????
Long, long, long story short-Dr Malley at Imaging for Women and all the staff I encountered there were fabulous. Kind, gentle, honest. Yet still couldn't hardly look me in the eye when I left with my films, numb, trying to fight back the tears with smiles and thank you's.
Biopsy needed. This week said Dr. Malley. Sooner than later. Use your resources at the hospital.
I went to work last night and took my films with me. One of my favorite Rads was working-and I wanted his opinion. I trust him, and it was exactly what I already knew.
Biopsy needed. Soon. Can probably do under sono. So Sorry you're dealing with this. Let me know if I can help expedite anything.
Brian and I met with Surgeon Dr Failing today. Nice man, no BS, cut to the chase, honest and straightforward like I like.
It's cancer. I have pretty much no doubt. Let's get this out and move forward quickly.
Is tomorrow quick enough? Yep-unless you can do it right now.
Anything smaller than 2cm is considered 'small'.
Yours is half that.
It's a really early catch.
Cancers this small have a 90% cure rate.
Sono guided biopsy for me on Friday Feb 10th.
The Rad will numb it, put a needle in it, take out a few samples, put a titanium clip in, do another mammo, send to pathology, wait.
Wait. A word kind of like Mass.
Have I thought about a course of treatment? Do you know me? Of course I have.
1. BRCA gene testing-I have a family history of breast cancer. I want to know if I carry the gene. Some people don't. I do. Knowledge is power. This is the power I want for my daughter, my sisters, my female cousins. Need a little light reading about this: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
2. Positive BRCA gene? Bilateral mastectomy, hysterectomy. I can't afford to have something come back in 5, 10, 15 years. I have a husband and kids and one of which is totally dependent on ME. Get it all out now.
3. Kick this cancer's ass.
cause cancer may not have known I was a bitch before. but it sure will now.
Wednesday, January 4, 2012
2011 A year in pictures....
My New Year's resolution will be to blog more.
I have lots to say. And I know you are all dying to know.
Just a few pics to document our crazy lives in 2011.
I learned a lot in 2011. A lot about myself. A lot about my family. A lot about life in general.
I turned 40 in 2011, and my husband threw me a party not to be outdone anytime soon.
I realized my best friend really is my husband, and I would be lost without him. He is always there for me, I am completely comfortable in my own skin with him, and he knows and loves me for me. All of me. Imperfect. Bitchy. Crazy. And everything in between. (oh, and there's lots in between-just ask him!)
I have the most wonderful kids a Mother could ask for. Yes, somedays, I don't question why certain animals eat their young, but for the most part know that they are the absolute best of me. The best of me that I didn't even know existed. I know they will make their ways in the world and leave marks on all they encounter. They are full of love, and never complain, even when something (or someone) changes their plans-namely the littlest and baldest one.
I have a great immediate family. I have crazy, funny, eccentric, bossy, bitchy sisters. My Mom is pretty much the same, we come by it all naturally, and I wouldn't change a thing.
My Dad's pretty amazing for having put up with all of us over the years and still have any hair left. I know, more than ever, that I can count on each and every one of them to be there for me, cause they have, and they will. Always and Forever. My brothers live out of state-and I'm sure for the reasons mentioned above :) I love and miss them bunches. My step-mom thinks we are all crazy, and ya know what-she's absolutely right! That's what I love about my family.
My extended family-cousins, aunts, uncles, great aunts, great uncles are pretty darn cool. They have opened their doors, arms, and hearts for us in this last year in ways I can never repay. I love having extended family I am close to, cause when we are all together they make me smile, make me laugh and make me drinks. They are giving my children a lot of what I had growing up-family far away in miles, but always close at heart. A gift they will cherish as they grow older-like I do!
My friends, my besties. Well, what other can I say about them other than they are all hot messes. Much like myself. Birds of a feather...you know the saying. Parties, hugs, dinners, lunches, sales, Bunco, late nights and early mornings, they are there. Phone, email, FB, text. They are there. I love them, need them, and can't imagine my life without them. Over the years I have realized what makes a friend, and what doesn't. All of you in my life, I call 'friend', thank you for being such.
I have a job to go to where I work with some amazing people who make me smile and sometimes laugh so hard my belly hurts. I enjoy going to work, and I know lots of people who can't say that. I like helping people, but sometimes I wonder why people don't help themselves more often-then maybe they wouldn't be on my scan table. My work place is like it's own little world, one I love to escape to some days and just be an employee-not a mom, wife or caregiver. I have needed that this year, and I got it.
I have known love this year like never before.
Thanks 2011, it's been a good year, cause I made it through, I'm still here, and get to live another one.
Cheers to the memories made and the ones yet to make.
Bring it on 2012-I'm ready.
I have lots to say. And I know you are all dying to know.
Just a few pics to document our crazy lives in 2011.
I learned a lot in 2011. A lot about myself. A lot about my family. A lot about life in general.
I turned 40 in 2011, and my husband threw me a party not to be outdone anytime soon.
I realized my best friend really is my husband, and I would be lost without him. He is always there for me, I am completely comfortable in my own skin with him, and he knows and loves me for me. All of me. Imperfect. Bitchy. Crazy. And everything in between. (oh, and there's lots in between-just ask him!)
I have the most wonderful kids a Mother could ask for. Yes, somedays, I don't question why certain animals eat their young, but for the most part know that they are the absolute best of me. The best of me that I didn't even know existed. I know they will make their ways in the world and leave marks on all they encounter. They are full of love, and never complain, even when something (or someone) changes their plans-namely the littlest and baldest one.
I have a great immediate family. I have crazy, funny, eccentric, bossy, bitchy sisters. My Mom is pretty much the same, we come by it all naturally, and I wouldn't change a thing.
My Dad's pretty amazing for having put up with all of us over the years and still have any hair left. I know, more than ever, that I can count on each and every one of them to be there for me, cause they have, and they will. Always and Forever. My brothers live out of state-and I'm sure for the reasons mentioned above :) I love and miss them bunches. My step-mom thinks we are all crazy, and ya know what-she's absolutely right! That's what I love about my family.
My extended family-cousins, aunts, uncles, great aunts, great uncles are pretty darn cool. They have opened their doors, arms, and hearts for us in this last year in ways I can never repay. I love having extended family I am close to, cause when we are all together they make me smile, make me laugh and make me drinks. They are giving my children a lot of what I had growing up-family far away in miles, but always close at heart. A gift they will cherish as they grow older-like I do!
My friends, my besties. Well, what other can I say about them other than they are all hot messes. Much like myself. Birds of a feather...you know the saying. Parties, hugs, dinners, lunches, sales, Bunco, late nights and early mornings, they are there. Phone, email, FB, text. They are there. I love them, need them, and can't imagine my life without them. Over the years I have realized what makes a friend, and what doesn't. All of you in my life, I call 'friend', thank you for being such.
I have a job to go to where I work with some amazing people who make me smile and sometimes laugh so hard my belly hurts. I enjoy going to work, and I know lots of people who can't say that. I like helping people, but sometimes I wonder why people don't help themselves more often-then maybe they wouldn't be on my scan table. My work place is like it's own little world, one I love to escape to some days and just be an employee-not a mom, wife or caregiver. I have needed that this year, and I got it.
I have known love this year like never before.
Thanks 2011, it's been a good year, cause I made it through, I'm still here, and get to live another one.
Cheers to the memories made and the ones yet to make.
Bring it on 2012-I'm ready.
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