I am just shy of 4 weeks away from surgery. When you hit the 30 day out mark there is a whole list of things that need to be done. A pre-op appointment that includes chest x-ray, blood work, abdomen CTA scan, ekg...etc.. all very practical. But I really need to get in the right head space for this countdown. I feel like there is a delicate balance between practical medical vs practical emotional. .
So here is the actual procedure I will be having on December 6, with the explanation from the Johns Hopkins website Prophylactic Bilateral Mastectomy with Direct to Implant DIEP reconstruction.
There is no amount of testimonies or FB support group conversations/photos that can really prepare me for this mentally. It is major surgery and there is no dodging that. The first 24 hours (at least) I will be in the ICU. And then, everything after that all depends on how my body chooses to react to all of the changes. I have never been a risk taker or gambler, and this feels like a risk and a gamble of my whole life. I have decided to make a list of my concerns and fears and the risk associated so that I can try to logic my way out of some of this nervousness.
1. 8-12 hours under anesthesia. (obviously I would prefer to be under as opposed to not), but this seems like a such a VAST amount of time for my body to be under that amount of stress. I have tolerated anesthesia before, but never for very long!
2. I will be cut up like Jack the Ripper got to me-intentionally! Not only will entire parts of my body be cut away, the parts that remain will be beat up pretty good ( for hours!) and will take weeks to recover, like 8 not 2.
3. There is a strong chance that I will lose my nipples. (Yes, losing nipples is probably better than the alternative of losing life, I understand.) But it is weird. I don't care what anyone says, it is weird.
4. They will legit be pulling my skin down to a whole new place. (How is that even possible?!) Just take the skin that previously covered upper ab, to pull it down like a WINDOW SHADE, so that it makes up for all of the skin that will be removed prior to all of the tissue that will be removed. (AHHHHHH!!!)
5. There is a chance that any or all of it could fail. My tissue that has been moved might just be like-Fuck you, I like it where I was, I was comfortable there, blood flow was never threatened, I was where God intended me to be, Who do you think you are moving body tissue around like a magical deity?
6. If it does fail...shit will just die. It will DIE. Parts of my body previously ALIVE and well, will DIE. You know darn well that is some scary shit.
7. After all of that, they will send me home with at least 4 drains attached to all of the messy parts that will STAY attached to all of the sore parts, for 1-2 weeks (maybe more?). Of which I will have to try to figure out how to live with all of those drains hanging off of my body. (Super CUTE)
8. Isn't that really enough to make you go hmmmmmm...? But then I will be missing all of that work, missing out on walking my dog, and lingering in my house for long periods of time, alone.
UGGHHHH.
Since I started this game of what if, I have to play it all the way out, it is one of my life rules, if I start to spiral about what "might" happen in a negative manner, I MUST also look at it from the positive side. What if all things go perfectly and according to plan? That is a different narrative.
1. They could get the surgery done in record time because my surgeons are so skilled and experienced that it is was a piece of cake for them!
2. After all of the cutting I might be skinnier and shapelier than I have been in many years! Duh, who doesn't want that?!
3. My doctors could again knock it out of the park and spare my nipples and it will look totally "normal", OR they do more reconstruction later and I get to "pick out" new nipples that they just create or tattoo on.
4. A tummy tuck is a tummy tuck, right? If this goes completely according to plan I will lose my muffin top and several pounds in the process! Who doesn't want that?
5. There is a chance (which is actually higher than the failure rate) that everything will be perfect and my body graciously welcomes new body parts to new areas and the blood supply flows freely, and it all looks new and fresh like a 20 something year old!
6. New skin, even if from a cadaver or pig, might genuinely be nicer than my current skin. Who knows!
7. The drains might effectively do their job and they could get out much sooner and make me mobile more quickly! I could attend holiday parties and such.
8. I can use my time healing to really heal, not think about the things I can't control, like work, or walking my dog, and just enjoy the beauty of how miraculous it is that a body can withstand ALL of that and still be strong and viable in just a few short weeks!
I think I got myself back on course here for the most part. But I would be lying if I said I wasn't still scared. Those are scary things, regardless of degree of pain and success, it just is.
So today the countdown ticker is at 26 days and swiftly moving toward that Dec. 6 date, with my thoughts moving at a similar pace.
So, I will try to concentrate on the things that I can control, eating well, staying healthy and strong, being prepared. And take the biggest gamble of my life that I will come out on the other side cancer-free and with a sense of control and power that I didn't wait for cancer to come to me, I kicked its ass before it even had a chance to arrive.
Peace and blessings,
kgc
Thursday, November 9, 2017
Tuesday, October 31, 2017
The head and the heart.
I am not a Total stranger to losing body parts, my gal bladder departed in 2007 (good riddance, nothing but trouble that one) and in 2015 I lost the L5S1 disc in my back. But those things have 1 really important thing in common, they weren't visible and they were relatively easy compared to the surgeries I have coming up.
As a perpetual life long learner, I have been studying, researching, questioning everyone and everything that I think might potentially help prepare me for this big procedure. In doing so, I have found my way into a few Facebook support groups, they are simultaneously terrifying and comforting. In my limited experience so far, I have found that the majority of people who post in these groups do so because they are facing some setback or hardship. (#BraveWomen) Remarkably, the other women in the group often have sound advice and experience to help allay fears and determine emergencies from normalities of healing. And they are FAST. I am relieved I have found a place that I know will be there for me if (when?) I struggle with these same issues.
However, the downside to this community is that people really ONLY post when they are in a state of panic or pain. Nobody really goes on and says, Hey ya'll, everything went picture perfect, exactly as expected and I didn't have a single obstacle. I totally get why, it might be hard to digest for some of the people who are really struggling, and really if things are going according to plan, how much support do you really need? That makes perfect sense. Unfortunately for me, that means that my FB feed is disproportionately filled with extreme complications and gruesome pictures of infected or mutilated body parts. UGGGHHH. It is a hard place to be in, because intellectually I completely understand the dynamic at work here. But my brain is like, ummm whoa. This is not good, who knew that was even a thing?! WHAT ARE WE DOING? Is it too late to back out?
My brain can race ahead of me a bit from time to time and I have to reel it back in like a prize winning fish on a hook. And it fights back, just like said fish. So then my self talk is like this:
Logic: You are seeing disproportionate results.
Brain: NO, RUN, NOW, DANGER, this NEVER Turns out ok!
Logic: Well, that is a generalization that is actually not true.
Brain: I AM LOOKING AT AN INFECTED NIPPLE with NECROSIS!!
Logic: Yes, sometimes that happens, it doesn't mean it will happen to us.
Brain: EVERY POST MENTIONS something TERRIBLE, ALL OF THEM!
Logic: See above disproportionate results.
Brain: SHOW ME PROOF!
Logic: Ok, so there are thousands of members in this group and only a few post about the problems, all of the other members are quiet because they are sailing through their daily life back at work, back in the "normal" world.
Brain: OR THEY GOT SEPSIS AND DIED
Logic: They didn't.
Brain: HOW DO YOU KNOW?
Logic: Because hospitals wouldn't be doing this multiple times per day, every day, all around the country. Completely Safe. Like flying vs. driving. Safer, actually.
Brain: I DON"T TRUST PLANES EITHER.
Logic: That is silly, now you are just being a brat.
So, you can see how this might stir up a bit of anxiety in my heart that is watching this dialogue like a Wimbledon tennis match spectator who can't decide who they are supposed to cheer for. #MyPoorHeart
Finally, my logic got the best of me (STOP YELLING BRAIN!), and decided to post in the group and just say, Hey, newbie here, 5 weeks out from surgery, would love to hear some success stories, especially ones from Johns Hopkins with Dr. __________.
GUESS WHAT?! THEY RESPONDED WITH ALL OF THE POSITIVITY I NEEDED!!
Logic: Told you so!
Brain: Ok, for now I will stand down. FOR NOW.
Turns out I just had to ask for what I needed. But asking for what you need is REALLY HARD. Because, I am like, really tough. So tough. Wonderwoman Tough.
UUGGHH the universe life lesson thing AGAIN?
I know, I know, tough people ask for help, blah blah blah. But not my level tough. Superhero tough, did I mention that?
So, as much as I have been putting out there on my blog that yes, I am going to accept help ( there really isn't a choice in this situation), what and how I ASK for will be the hard part, for me.
I have already set up the stuff I know must be done, parents at the hospital, post hospital at my sister's house, maybe the occasional home nurse a time or two when I return home, and care for my dog (although still working on that one).
But my very smart life friend from college, Julie, said to me the other night on the phone (with her guidance counselor/Superintendent superpowers), Kris, you have to plan for being lonely. Ummm what? Nah, I am good, I live alone.
Julie: no friend, not the same thing. You won't be driving anywhere, you won't be seeing people at work, you won't even see people in your neighborhood walking your dog.
BRAIN: FUCK, WE DID NOT PLAN FOR THIS!
Logic: Julie makes an excellent point, we might want to ask for help with this.
BRAIN: WAIT, MORE HELP?! I HATE ASKING FOR HELP! I AM A BIG GIRL, I CAN DO THIS.
Logic: Julie is definitely correct, maybe she can help.
BRAIN: ALREADY?! WE ARE ASKING FOR HELP ALREADY?! WHAT IF IT IS AN INCONVENIENCE TO PEOPLE?!
Logic: Then they will say no, and someone else will say yes.
BRAIN: HOW DO YOU KNOW?!
Logic: Because people love us and they already are supporting us. People want to help, sometimes they just don't know how, they need some direction.
Heart: Umm Yeah, what Logic Said.
Brain: Hmmmmm
Logic: I bet if you didn't accept help you might actually hurt THEIR feelings!
Brain: I don't want ANYONE to have hurt feelings!
Logic: So we know what needs to happen.
Brain: We have to be willing to accept help and ask for when needed.
Logic: yep.
Heart: Yep!
Brain: (sad puppy eyes) OK.
This might sound slightly psychotic, but it is just like allegory, or hyperbole, both I think.
It isn't out loud. I am aware that these parts of me don't actually talk.
But it does represent how difficult prophylactic medical decisions can be, it is hard to commit.
And if you know me at all, you know I struggle with commitment. (probably a few of you out there laughing at me and my commitment struggles because you know me so well) #MiddleNameWhat
So already it feels hard, even though I am still 5 weeks away from what I know will ACTUALLY be the hard part. And I have done all of the research, I have armed myself with knowledge, vitamins, extra protein, giving up caffeine (uggh sorry work friends). And the numbers are actually IN MY FAVOR.
And I have friends and family who want to help. And that part feels good, if I let it.
Heart: YES!!
So, thank you Julie Scully, for your infinite wisdom, and your willingness to take time off from work, just to come down and be with me (from 2 states away!), so I am not so lonely. And for all the other things you offered, we will just start there for now.
Brain: Damn, we have good friends!
Logic: Yes we do Brain, and Family too!
Heart: I never doubted it.
Peace and blessings all,
KGC
As a perpetual life long learner, I have been studying, researching, questioning everyone and everything that I think might potentially help prepare me for this big procedure. In doing so, I have found my way into a few Facebook support groups, they are simultaneously terrifying and comforting. In my limited experience so far, I have found that the majority of people who post in these groups do so because they are facing some setback or hardship. (#BraveWomen) Remarkably, the other women in the group often have sound advice and experience to help allay fears and determine emergencies from normalities of healing. And they are FAST. I am relieved I have found a place that I know will be there for me if (when?) I struggle with these same issues.
However, the downside to this community is that people really ONLY post when they are in a state of panic or pain. Nobody really goes on and says, Hey ya'll, everything went picture perfect, exactly as expected and I didn't have a single obstacle. I totally get why, it might be hard to digest for some of the people who are really struggling, and really if things are going according to plan, how much support do you really need? That makes perfect sense. Unfortunately for me, that means that my FB feed is disproportionately filled with extreme complications and gruesome pictures of infected or mutilated body parts. UGGGHHH. It is a hard place to be in, because intellectually I completely understand the dynamic at work here. But my brain is like, ummm whoa. This is not good, who knew that was even a thing?! WHAT ARE WE DOING? Is it too late to back out?
My brain can race ahead of me a bit from time to time and I have to reel it back in like a prize winning fish on a hook. And it fights back, just like said fish. So then my self talk is like this:
Logic: You are seeing disproportionate results.
Brain: NO, RUN, NOW, DANGER, this NEVER Turns out ok!
Logic: Well, that is a generalization that is actually not true.
Brain: I AM LOOKING AT AN INFECTED NIPPLE with NECROSIS!!
Logic: Yes, sometimes that happens, it doesn't mean it will happen to us.
Brain: EVERY POST MENTIONS something TERRIBLE, ALL OF THEM!
Logic: See above disproportionate results.
Brain: SHOW ME PROOF!
Logic: Ok, so there are thousands of members in this group and only a few post about the problems, all of the other members are quiet because they are sailing through their daily life back at work, back in the "normal" world.
Brain: OR THEY GOT SEPSIS AND DIED
Logic: They didn't.
Brain: HOW DO YOU KNOW?
Logic: Because hospitals wouldn't be doing this multiple times per day, every day, all around the country. Completely Safe. Like flying vs. driving. Safer, actually.
Brain: I DON"T TRUST PLANES EITHER.
Logic: That is silly, now you are just being a brat.
So, you can see how this might stir up a bit of anxiety in my heart that is watching this dialogue like a Wimbledon tennis match spectator who can't decide who they are supposed to cheer for. #MyPoorHeart
Finally, my logic got the best of me (STOP YELLING BRAIN!), and decided to post in the group and just say, Hey, newbie here, 5 weeks out from surgery, would love to hear some success stories, especially ones from Johns Hopkins with Dr. __________.
GUESS WHAT?! THEY RESPONDED WITH ALL OF THE POSITIVITY I NEEDED!!
Logic: Told you so!
Brain: Ok, for now I will stand down. FOR NOW.
Turns out I just had to ask for what I needed. But asking for what you need is REALLY HARD. Because, I am like, really tough. So tough. Wonderwoman Tough.
UUGGHH the universe life lesson thing AGAIN?
I know, I know, tough people ask for help, blah blah blah. But not my level tough. Superhero tough, did I mention that?
So, as much as I have been putting out there on my blog that yes, I am going to accept help ( there really isn't a choice in this situation), what and how I ASK for will be the hard part, for me.
I have already set up the stuff I know must be done, parents at the hospital, post hospital at my sister's house, maybe the occasional home nurse a time or two when I return home, and care for my dog (although still working on that one).
But my very smart life friend from college, Julie, said to me the other night on the phone (with her guidance counselor/Superintendent superpowers), Kris, you have to plan for being lonely. Ummm what? Nah, I am good, I live alone.
Julie: no friend, not the same thing. You won't be driving anywhere, you won't be seeing people at work, you won't even see people in your neighborhood walking your dog.
BRAIN: FUCK, WE DID NOT PLAN FOR THIS!
Logic: Julie makes an excellent point, we might want to ask for help with this.
BRAIN: WAIT, MORE HELP?! I HATE ASKING FOR HELP! I AM A BIG GIRL, I CAN DO THIS.
Logic: Julie is definitely correct, maybe she can help.
BRAIN: ALREADY?! WE ARE ASKING FOR HELP ALREADY?! WHAT IF IT IS AN INCONVENIENCE TO PEOPLE?!
Logic: Then they will say no, and someone else will say yes.
BRAIN: HOW DO YOU KNOW?!
Logic: Because people love us and they already are supporting us. People want to help, sometimes they just don't know how, they need some direction.
Heart: Umm Yeah, what Logic Said.
Brain: Hmmmmm
Logic: I bet if you didn't accept help you might actually hurt THEIR feelings!
Brain: I don't want ANYONE to have hurt feelings!
Logic: So we know what needs to happen.
Brain: We have to be willing to accept help and ask for when needed.
Logic: yep.
Heart: Yep!
Brain: (sad puppy eyes) OK.
This might sound slightly psychotic, but it is just like allegory, or hyperbole, both I think.
It isn't out loud. I am aware that these parts of me don't actually talk.
But it does represent how difficult prophylactic medical decisions can be, it is hard to commit.
And if you know me at all, you know I struggle with commitment. (probably a few of you out there laughing at me and my commitment struggles because you know me so well) #MiddleNameWhat
So already it feels hard, even though I am still 5 weeks away from what I know will ACTUALLY be the hard part. And I have done all of the research, I have armed myself with knowledge, vitamins, extra protein, giving up caffeine (uggh sorry work friends). And the numbers are actually IN MY FAVOR.
And I have friends and family who want to help. And that part feels good, if I let it.
Heart: YES!!
So, thank you Julie Scully, for your infinite wisdom, and your willingness to take time off from work, just to come down and be with me (from 2 states away!), so I am not so lonely. And for all the other things you offered, we will just start there for now.
Brain: Damn, we have good friends!
Logic: Yes we do Brain, and Family too!
Heart: I never doubted it.
Peace and blessings all,
KGC
Monday, October 23, 2017
Cowboy take me away...(FYI Bitch Rant Ahead)
I LOVED this song by the Dixie Chicks circa 1999/2000, and it is still a great song that I was reminded of this morning when I did my 5:30 am research session on my upcoming PBM (learning the lingo and acronyms!) aka Prophylactic Bilateral Mastectomy with DTI (direct to implant, or in my case, direct tissue exchange-because I am NOT getting actual implants, but my own tissue from belly). Wheew long sentence with lots of subtext, sorry. So, I am now in 2 exclusive Facebook groups for people who are going through similar situations, and this has been VERY helpful so far, they post pictures of what to expect, share experiences, before, after, during, etc.. and are just generally, all around fantastic women demonstrating strength and providing comfort to strangers. I dig it, I REALLY do.
However, today I got a little sidetracked and wanted to perhaps lash out a bit at a particular fellow blogger. I don't want to be judgmental, I promise, I don't, but this chick GOT to me. I am no stranger to the concept that everyone has their own cross to bear, despite having a highlight reel on Facebook. Nonetheless, I kind of had an adverse reaction to this blog. Also-disclaimer-I support all women, regardless of life choices, etc...but that doesn't mean this one didn't irk me. I am also VERY aware that my reaction has EVERYTHING to do with me and nothing with her. So, I am Clear.
But back to the point. I found this blog of a woman having similar procedures to mine and tried to look past her blog title (Housewife in Heels), because that is super cute, not my style, but cute. And I started in on her reflections of the procedure to see what helpful sister in solidarity advice I could glean from her story.
As it turns out-she had ZERO adversity. (It is not appropriate to call a sister-soldier from this war on cancer bad names, but I just want to.)
Instead I shall reflect on why this is so aggravating to me, which again, is awesome for her, and all about my own issues. #SmileyFace!
Sister-Housewife-in-Heels (referred to as SHIH henceforth), had this amazing experience, it started with her anxiety being put to rest when she quoted a bible verse, and God personally reached out and took her anxiety away, and from that point forward she was entertaining her entire surgical staff with her calm demeanor and witty sense of humor. (YAY) Her surgery took a mere 4 hours, and she continued to entertain her medical team with her hilarious banter because she had never been under the influence of drugs before (anesthesia or otherwise, including alcohol), how nice for her! I have been under the influence of anesthesia before and I woke up tied to the bed and ready to vomit because I got "a little combative." #MyBad
After she returned to her room for the night, her "Cowboy" was waiting for her and ready to respond to her every whim. #adorbs She uses code names for all of her family in her blog, to protect the innocent I presume. Cowboy really did make everything perfect and they were discharged by 10 am the next day! Rock on sister! Then they stayed at a luxury hotel close to the hospital for a few days so SHIH and Cowboy could have some alone time to adjust before going home and having to deal with Mom of SHIH, Mom of Cowboy, and Mary Poppins (she seriously called her nanny that), and her 2.5 children (ok fine, just 2). How delightful for her! Room service and painkillers, it occurred to me that she was actually living the life of a modern day rock star.
Then after a few days, they headed home, where everything went exactly as planned. Her mother, mother in law, husband, and Mary Poppins did everything she needed, food, rest, so she could nap and catch up on new PBS shows. (What was she even worried about?!)
And finally I had to stop reading. I relate to NOTHING in this blog so I had to move on.
And this is where my own issues get completely compounded and blown way up in my head. I DON'T HAVE A COWBOY! Or a MOM! Or a MOTHER-IN-LAW, and Definitely, no Mary Poppins. #lipquivering #ImNotCryingYouAre
Hard as it may be to believe, no Cowboy ever showed up to take me away like in the song I love so much! And since he did not ever show up, I have no tough-as-nails, sweet-as-pie husband to care for me. #Curses
And #Buzzkill my mom died 23 years ago. I can usually roll on with my life despite these things that "seem normal" for most other people. But now I feel pretty damn slighted, but let me explain why. The guilt I described in Blog Post 1 is also compounded by the fact that I have to rely on so many external people to fill in for the non-existent Cowboy and the missing mother and potential mother-in-law. My anger and rage towards SHIH is that she has all the things I thought I would have by the time I went through this. Of course that is not how life is, I know, I know. I don't NOT want SHIH to have all of those things, I just want maybe like 50% of what she has for this particular situation.
And don't get it twisted, LOTS of people have offered to help, THANK YOU! But it is that, unconditional love of the 2 people who will be there for you the ENTIRE time that is missing. And I know people will help, but it is up to me to plan and schedule and fill in holes, and chances are I will miss things, because walking my dog 2xs a day for 3 months is a RIDICULOUS amount of work to ask someone for! So I may not ask every time, because I don't want to take away from the everyday obligations that people have in their own families. To be honest, after my back surgery I couldn't even remember if I took my meds everyday, let alone who would be coming to my house to walk my dog 2 times a day or make sure I have food within reach because I can't raise my arms above my shoulders. I don't have someone who will wash my hair because I can't shower for weeks (legit, weeks), or if I was really being picky, someone to shave my legs-although that might be pushing it, I barely shave my own legs, so that is just me whining at this point.
And the unspoken thing that is really on my mind is, will a cowboy want to show up if I have big scars all over my body?
I let my emotions get the best of me today, and I promise this is not how the rest of this blog thing is going to go, in fact, I am doing the blog precisely to KEEP my head in a positive space, but hey, I am not perfect. Honestly, I can barely wear heels to work, and I damn sure don't wear them at home. But that is just me. AND does a cowboy REALLY want his cowgirl to wear heels? Because I would think he would like her in boots, and I am a total boot girl.
However, today I got a little sidetracked and wanted to perhaps lash out a bit at a particular fellow blogger. I don't want to be judgmental, I promise, I don't, but this chick GOT to me. I am no stranger to the concept that everyone has their own cross to bear, despite having a highlight reel on Facebook. Nonetheless, I kind of had an adverse reaction to this blog. Also-disclaimer-I support all women, regardless of life choices, etc...but that doesn't mean this one didn't irk me. I am also VERY aware that my reaction has EVERYTHING to do with me and nothing with her. So, I am Clear.
But back to the point. I found this blog of a woman having similar procedures to mine and tried to look past her blog title (Housewife in Heels), because that is super cute, not my style, but cute. And I started in on her reflections of the procedure to see what helpful sister in solidarity advice I could glean from her story.
As it turns out-she had ZERO adversity. (It is not appropriate to call a sister-soldier from this war on cancer bad names, but I just want to.)
Instead I shall reflect on why this is so aggravating to me, which again, is awesome for her, and all about my own issues. #SmileyFace!
Sister-Housewife-in-Heels (referred to as SHIH henceforth), had this amazing experience, it started with her anxiety being put to rest when she quoted a bible verse, and God personally reached out and took her anxiety away, and from that point forward she was entertaining her entire surgical staff with her calm demeanor and witty sense of humor. (YAY) Her surgery took a mere 4 hours, and she continued to entertain her medical team with her hilarious banter because she had never been under the influence of drugs before (anesthesia or otherwise, including alcohol), how nice for her! I have been under the influence of anesthesia before and I woke up tied to the bed and ready to vomit because I got "a little combative." #MyBad
After she returned to her room for the night, her "Cowboy" was waiting for her and ready to respond to her every whim. #adorbs She uses code names for all of her family in her blog, to protect the innocent I presume. Cowboy really did make everything perfect and they were discharged by 10 am the next day! Rock on sister! Then they stayed at a luxury hotel close to the hospital for a few days so SHIH and Cowboy could have some alone time to adjust before going home and having to deal with Mom of SHIH, Mom of Cowboy, and Mary Poppins (she seriously called her nanny that), and her 2.5 children (ok fine, just 2). How delightful for her! Room service and painkillers, it occurred to me that she was actually living the life of a modern day rock star.
Then after a few days, they headed home, where everything went exactly as planned. Her mother, mother in law, husband, and Mary Poppins did everything she needed, food, rest, so she could nap and catch up on new PBS shows. (What was she even worried about?!)
And finally I had to stop reading. I relate to NOTHING in this blog so I had to move on.
And this is where my own issues get completely compounded and blown way up in my head. I DON'T HAVE A COWBOY! Or a MOM! Or a MOTHER-IN-LAW, and Definitely, no Mary Poppins. #lipquivering #ImNotCryingYouAre
Hard as it may be to believe, no Cowboy ever showed up to take me away like in the song I love so much! And since he did not ever show up, I have no tough-as-nails, sweet-as-pie husband to care for me. #Curses
And #Buzzkill my mom died 23 years ago. I can usually roll on with my life despite these things that "seem normal" for most other people. But now I feel pretty damn slighted, but let me explain why. The guilt I described in Blog Post 1 is also compounded by the fact that I have to rely on so many external people to fill in for the non-existent Cowboy and the missing mother and potential mother-in-law. My anger and rage towards SHIH is that she has all the things I thought I would have by the time I went through this. Of course that is not how life is, I know, I know. I don't NOT want SHIH to have all of those things, I just want maybe like 50% of what she has for this particular situation.
And don't get it twisted, LOTS of people have offered to help, THANK YOU! But it is that, unconditional love of the 2 people who will be there for you the ENTIRE time that is missing. And I know people will help, but it is up to me to plan and schedule and fill in holes, and chances are I will miss things, because walking my dog 2xs a day for 3 months is a RIDICULOUS amount of work to ask someone for! So I may not ask every time, because I don't want to take away from the everyday obligations that people have in their own families. To be honest, after my back surgery I couldn't even remember if I took my meds everyday, let alone who would be coming to my house to walk my dog 2 times a day or make sure I have food within reach because I can't raise my arms above my shoulders. I don't have someone who will wash my hair because I can't shower for weeks (legit, weeks), or if I was really being picky, someone to shave my legs-although that might be pushing it, I barely shave my own legs, so that is just me whining at this point.
And the unspoken thing that is really on my mind is, will a cowboy want to show up if I have big scars all over my body?
I let my emotions get the best of me today, and I promise this is not how the rest of this blog thing is going to go, in fact, I am doing the blog precisely to KEEP my head in a positive space, but hey, I am not perfect. Honestly, I can barely wear heels to work, and I damn sure don't wear them at home. But that is just me. AND does a cowboy REALLY want his cowgirl to wear heels? Because I would think he would like her in boots, and I am a total boot girl.
Friday, October 20, 2017
Little Sisters, some things never change...
So, the good news is that I have felt all the love and support spurred on by my blog! THANK YOU! Despite the fact that my sister posted it on social media before I was really ready to do that. #ThanksForOutingMe #NotHowIPlannedIt #SorryToThePeopleIDidn'tTellPersonally But this is what loving siblings do, right? I remember when Ryan was a feisty and loving big brother at the tender age of almost 3, and felt that Alex's dried umbilical chord needed to be removed IMMEDIATELY with a good, strong, YANK. I still remember Mom in slow motion...NOOOOOOooooo and the blood curdling screams from new baby Alex.
And so, that is how my (new name I learned from insurance) Full Bilateral Mastectomy reveal felt. Just a little bit. It is not that I wasn't prepared to share and discuss, it was that I wanted to make sure I told some people in person, and I mostly did, but there are a few of you out there that I owe apologies to, I am sorry I didn't get a chance to tell you personally. It wasn't personal, my baby sister thought she was being helpful, "I just thought you didn't want to toot your own horn!" Bless her heart.
So, hopefully, we are all past that, and we can move on to updates and thoughts (maybe feelings?) I will see how it goes. No promises.
I typically wake up every morning at 5:30 am. (naturally, which is slightly annoying), and this past week, the first thing I do is search for new research or information on the process that I am having done. I sift through any new found research or narratives I can find to see if there is any new information that I should be arming myself with. Not much comes from those morning sessions and sometimes I just end up falling back to sleep. However, the more people hear about my situation, the more feedback I have been getting, sometimes it is even unsolicited and graphic! Fun times.
Last night I finally articulated to my fairy godmother (no, for real, fairy godmother #mygodmotherisbetterthanyours) that I feel terribly guilty about having this procedure voluntarily while so, so many women have a terrifying cancer diagnosis to go with it. For the record, I shall state, that logically I realize that is silly. Unfortunately, knowing something logically doesn't always make the feelings go away.
And this is when the fairy godmother worked her fairy godmother magic (AKA her professional life coach skills) and flipped it all around and helped me see it from a different perspective. She simply asked if I was still in the PALB2 study, which I am, and ever so gently pointed out that my surgery will in fact directly affect the women of the future who will be facing cancer, or a high risk rate, such as myself. Suddenly my vision widened and I no longer felt like this was a completely selfish journey, I will be contributing to the overall knowledge of this nasty mutation and women will be able to make better informed decisions because I went before them! And the veil has lifted. (Did you see the fairy godmother wand just whizzz by?!)
I had another big revelation this week, I have a few choices I didn't realize I had! This is also really important to me.There is an element of powerlessness in this type of situation, putting your life and your body(appearance) into the hands of other people, for 4-12 hours straight during surgery, not to mention the helplessness that comes in the weeks following of not being able to fully care for myself. But choices, choices about how this will happen and when, make a huge difference. I went to all of my pre-appointments alone, and as overwhelming as it was, I probably didn't really hear everything. Initially I just went along with the recommendations. It wasn't until I talked to some other people, including my primary care physician, that I decided I could decline 2 surgeries and choose to get it all done in one. They both have their pros and cons, but after a week of deliberation, I made the choice and made the changes. This means that I will have a much longer surgery, a longer hospital stay(about a week), and much longer recovery process (8 weeks or more). BUT I HAVE CHOICES! I am definitely the person who will face adversity head on, despite fear or trepidation, so here we go! One and Done, you know, like a Kentucky basketball player.
Since starting this post, the details have changed. Since the surgery is much longer, they can't do it during the slot I was originally scheduled for, the new (and longer surgery) is now scheduled for Dec. 6. So I will be hurrying up to wait, as they say. And in the meantime little sister is starting her process of the same journey, I just wanted to put that in here...because turnabout is fair play little sister. Fair play.
Peace and Love,
KGC
And so, that is how my (new name I learned from insurance) Full Bilateral Mastectomy reveal felt. Just a little bit. It is not that I wasn't prepared to share and discuss, it was that I wanted to make sure I told some people in person, and I mostly did, but there are a few of you out there that I owe apologies to, I am sorry I didn't get a chance to tell you personally. It wasn't personal, my baby sister thought she was being helpful, "I just thought you didn't want to toot your own horn!" Bless her heart.
So, hopefully, we are all past that, and we can move on to updates and thoughts (maybe feelings?) I will see how it goes. No promises.
I typically wake up every morning at 5:30 am. (naturally, which is slightly annoying), and this past week, the first thing I do is search for new research or information on the process that I am having done. I sift through any new found research or narratives I can find to see if there is any new information that I should be arming myself with. Not much comes from those morning sessions and sometimes I just end up falling back to sleep. However, the more people hear about my situation, the more feedback I have been getting, sometimes it is even unsolicited and graphic! Fun times.
Last night I finally articulated to my fairy godmother (no, for real, fairy godmother #mygodmotherisbetterthanyours) that I feel terribly guilty about having this procedure voluntarily while so, so many women have a terrifying cancer diagnosis to go with it. For the record, I shall state, that logically I realize that is silly. Unfortunately, knowing something logically doesn't always make the feelings go away.
And this is when the fairy godmother worked her fairy godmother magic (AKA her professional life coach skills) and flipped it all around and helped me see it from a different perspective. She simply asked if I was still in the PALB2 study, which I am, and ever so gently pointed out that my surgery will in fact directly affect the women of the future who will be facing cancer, or a high risk rate, such as myself. Suddenly my vision widened and I no longer felt like this was a completely selfish journey, I will be contributing to the overall knowledge of this nasty mutation and women will be able to make better informed decisions because I went before them! And the veil has lifted. (Did you see the fairy godmother wand just whizzz by?!)
I had another big revelation this week, I have a few choices I didn't realize I had! This is also really important to me.There is an element of powerlessness in this type of situation, putting your life and your body(appearance) into the hands of other people, for 4-12 hours straight during surgery, not to mention the helplessness that comes in the weeks following of not being able to fully care for myself. But choices, choices about how this will happen and when, make a huge difference. I went to all of my pre-appointments alone, and as overwhelming as it was, I probably didn't really hear everything. Initially I just went along with the recommendations. It wasn't until I talked to some other people, including my primary care physician, that I decided I could decline 2 surgeries and choose to get it all done in one. They both have their pros and cons, but after a week of deliberation, I made the choice and made the changes. This means that I will have a much longer surgery, a longer hospital stay(about a week), and much longer recovery process (8 weeks or more). BUT I HAVE CHOICES! I am definitely the person who will face adversity head on, despite fear or trepidation, so here we go! One and Done, you know, like a Kentucky basketball player.
Since starting this post, the details have changed. Since the surgery is much longer, they can't do it during the slot I was originally scheduled for, the new (and longer surgery) is now scheduled for Dec. 6. So I will be hurrying up to wait, as they say. And in the meantime little sister is starting her process of the same journey, I just wanted to put that in here...because turnabout is fair play little sister. Fair play.
Peace and Love,
KGC
Tuesday, October 10, 2017
Vanity has never really been my thing...
In my 44th year of life I realized that prophylactic was not a synonym for birth control. Which is somewhat odd because I fancy myself a wordsmith, nonetheless, it is actually synonymous with preventative. Which makes perfect sense, maybe I can claim blonde moment?
And this brings me to the point of this new blog "journey" (to get all new-agey on you). I find myself in a unique situation of knowing at least 1 of my DNA gene mutations (which we probably all have, I just happen to have been tested for mine). This particular mutation is in the PALB2 gene and it likes to create cancerous cells in a multitude of areas, and one of these areas is breast cancer. It wants to play with other cells too, but I am concentrating on the breast one, because that is where my power is at the moment.
It's not the "sexy" Angelina Jolie gene mutation, but like, the nerdy, back of the classroom wallflower mutation that likes to sneak around and pop up when you aren't looking. So, I have decided to shed some light on this (only recently discovered) mutation by documenting the next few months as I pretend to, as they say in Hollywood, "get some work done." And I am convincing myself that if I look at it like that, the fear subsides just a little bit.Like, a teensy, weensy, tiny bit.
The reality is I am having a prophylactic mastectomy because the chances of me actually getting breast cancer is upwards of 58%, and the longer I wait, the higher the risk. You don't have to tell me twice, let's do this.
My cousin Meg totally made breast cancer her bitch when she found out her PALB2 mutation had started to mutate the cells in her breast just last year. And she did it with the grace of a princess. She is kick ass, taking it all in stride, with chemo and the whole medical warfare weapons we currently have. And when I asked her if she wished she had done the prophylactic mastectomy instead of chancing it with early detection, it just seemed like there was no other answer.
So, here we go! There are also other family members who have this ugly mutation as well, and we are all navigating these new waters in our own time in our own way.
This blog will be my journey (for lack of a better word), from today (when I actually scheduled my surgery) until I am done with every last surgery. This blog is twofold, selfishly I shall document the process to try to make light of it and just deal. The second part is because I haven't found anything out there in narrative form that takes me through all of the parts of this process. In this space I will start to accumulate and check off all of the things I need to do to prep for surgery and recovery(physically and mentally). Hopefully it will have all the makings of a great movie! Laughing, crying, and a happy ending!
Come along if you choose, or pass along to someone who might appreciate.
Peace and blessings.
KGC
And this brings me to the point of this new blog "journey" (to get all new-agey on you). I find myself in a unique situation of knowing at least 1 of my DNA gene mutations (which we probably all have, I just happen to have been tested for mine). This particular mutation is in the PALB2 gene and it likes to create cancerous cells in a multitude of areas, and one of these areas is breast cancer. It wants to play with other cells too, but I am concentrating on the breast one, because that is where my power is at the moment.
It's not the "sexy" Angelina Jolie gene mutation, but like, the nerdy, back of the classroom wallflower mutation that likes to sneak around and pop up when you aren't looking. So, I have decided to shed some light on this (only recently discovered) mutation by documenting the next few months as I pretend to, as they say in Hollywood, "get some work done." And I am convincing myself that if I look at it like that, the fear subsides just a little bit.Like, a teensy, weensy, tiny bit.
The reality is I am having a prophylactic mastectomy because the chances of me actually getting breast cancer is upwards of 58%, and the longer I wait, the higher the risk. You don't have to tell me twice, let's do this.
My cousin Meg totally made breast cancer her bitch when she found out her PALB2 mutation had started to mutate the cells in her breast just last year. And she did it with the grace of a princess. She is kick ass, taking it all in stride, with chemo and the whole medical warfare weapons we currently have. And when I asked her if she wished she had done the prophylactic mastectomy instead of chancing it with early detection, it just seemed like there was no other answer.
So, here we go! There are also other family members who have this ugly mutation as well, and we are all navigating these new waters in our own time in our own way.
This blog will be my journey (for lack of a better word), from today (when I actually scheduled my surgery) until I am done with every last surgery. This blog is twofold, selfishly I shall document the process to try to make light of it and just deal. The second part is because I haven't found anything out there in narrative form that takes me through all of the parts of this process. In this space I will start to accumulate and check off all of the things I need to do to prep for surgery and recovery(physically and mentally). Hopefully it will have all the makings of a great movie! Laughing, crying, and a happy ending!
Come along if you choose, or pass along to someone who might appreciate.
Peace and blessings.
KGC
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