If all goes well,
I had my last mammogram today.
Like last - as in forever!
Wahoo!!!!!
I have been having a mammogram or Breast MRI's
ever six months since being diagnosed.
With the mastectomy and reconstruction I will have done soon,
I will no longer need either.
I won't miss them.
Next month I go to Salt Lake to meet and have a consultation with a plastic surgeon.
I have heard a lot of scary things about the type of reconstruction I want,
but I have also seen a lot of amazing results.
It is a very complicated surgery - micro surgery.
Surgery can last anywhere from 4 to 12 hours,
with at least 3 surgeons working simultaneously.
The hospital stay is usually 5 to 7 days, the first few being in the ICU.
Recovery is hard and long too.
Basically they want you moving,
but no cooking, cleaning, bending, lifting, stretching, climbing stairs...for months.
It can not all be done in one surgery so it is done in phases.
Usually 3.
I hope to have all of them done in one year.
That is why I am starting in January.
The procedure is called Deep Inferior Epigastric Perforator or DIEP flap.
Simply - you are cut from hip to hip below the belly button.
They dissect the fat and skin from the muscle and relocate it to the breast.
Since fat needs a blood supply if the vessel in the chest wall are not big enough or ruined from, say radiation,
they will break a rib and tap into the blood supply there.
Then they pull, sew, stitch and glue everything back together.
Here is all the technical stuff:
A DIEP flap is a microsurgical breast reconstruction where skin, fat and the associated blood vessels that keep it alive are transplanted to the chest wall from the abdomen during the Stage 1 Procedure. No muscle or motor nerves are sacrificed in the execution of this form of breast reconstruction. Blood vessels of the flap are connected to either blood vessels in the chest wall or under the arm in the axilla using an operating room microscope. Unilateral and Bilateral DIEP flap breast reconstruction can be performed in a 4-12 hour general anesthetic in the setting of a 5-day hospital stay with a focus on flap monitoring. Blood thinners are administered to prevent deep venous thromboses or pulmonary emboli. Sensory innervation can be supplied by the incorporation of a sensory autograft. Costochondral cartilage or rib resection is uncommon unless you are a very petite woman.
Stage 2 of this reconstructive technique involves the aesthetic shaping of the breast reconstruction flap and the completion of any counterbalancing procedures of the remaining breast (breast reduction, breast lift or breast augmentation). It is typically done 3 months after Stage 1 but can occur later for patient convenience. Excess skin from the flap previously placed for perioperative monitoring will be removed. Revisions to the donor site include liposuction and scar revisions. Nipple reconstruction is completed at this stage. On occasion in the irradiated patient, nipple reconstruction is deferred to a later date allowing for the revised reconstruction to settle, therefore optimizing nipple placement. Stage 2 procedures can be completed in a 2-hour MAC anesthesia in an outpatient setting.
Areolar reconstruction will be completed as a Stage 3 procedure in 2 months in the office.
DIEP flap breast reconstruction has been associated with mild buldging of the abdominal wall but with a significantly decreased rate of abdominal wall weakness or hernia. It has not been associated with post-operative back pain. Common complications are seromas or collections of fluid under the skin that may require needle aspiration.
DIEP total flap failure can be seen in less than 1% of cases.
DIEP total flap failure is diagnosed prior to your release from the hospital. Most patients with a failed DIEP flap undergo a secondary microsurgical flap procedure during the same hospitalization or at a later date, typically at 3 months, in the form of an I-GAP flap.
DIEP partial flap loss is commonly referred to as fat necrosis. Fat necrosis can present as a firm area of the breast reconstruction flap where the blood supply was not adequate enough to keep the tissue soft and viable. It likely represents an anatomic variant of the individual (not unlike a "hole" in your Christmas tree), OR possibly the poor choice of the perforating blood vessels to support the flap reconstruction. To avoid fat necrosis a pre-operative CT or MR angiogram is done so your procedure can be based on the most robust blood vessel of your abdominal wall.
PS In case you were wondering, I do NOT recommend googling a video of this.
PPS The mammogram came back - stable mammographic appearance. No new concerning microcalcifications. Benign Findings
Another Wahoo!!!
.
Thursday, April 21, 2016
Tuesday, April 5, 2016
Where Is My Epiphany?
Where Is My Epiphany?
By Nancy Stordahl
Do you ever wonder what great lesson(s) you’re supposed to have learned from cancer?
I have wondered.
This is another cancer expectation that’s out there and continuously perpetuated.
We’re supposed to learn from, and therefore potentially be grateful for, the life “detour” that is cancer are we not?
We are supposed to be transformed into a new and improved version of our former selves, right?
I often read articles about cancer survivors proclaiming to be transformed, enlightened, improved upon, bettered, or whatever.
It seems many have experienced some sort of epiphany.
And I’m happy for those individuals.
I mean that.
That is not sarcasm.
But it just hasn’t worked out that way for me.
Sometimes I wonder if perhaps I’m a slow learner or something.
Sometimes I wonder if someone forgot to give me my copy of the, “how to properly do and learn from cancer,” handbook.
That is sarcasm.
After five years, actually after ten years if I count my mother’s cancer experience,
I sometimes feel I should be enlightened about many things by now.
About what I have no idea.
I wish I did.
I really want to know…
And what is an epiphany anyway?
In this context, it’s generally defined as a revelation, a sudden manifestation, or realization about the meaning of something; an illuminating discovery.
Well, that has not happened for me.
Sure I have picked up some nuggets of wisdom during the past five years, but a lot, maybe even most of the stuff I have learned from and about cancer, is totally shitty stuff.
In fact, I was thinking about writing a blog post with that exact title – 10 Shitty Things Cancer Has Taught Me – or something like that. There are way more than ten things too.
But I probably shouldn’t publish such a post if I should end up writing it.
Maybe I shouldn’t have even published this one.
Because you know, the positivity police are always out there.
Okay, so I’m being rather sarcastic in this post and cynical and maybe even a little grumpy.
So what?
Sometimes I get weary of all the cancer expectations and cancer language nonsense out there,
much of which makes no sense to me.
And okay, sometimes I get cranky too.
And I sure would like to know…
Where is my epiphany?
I feel this way a lot.
What am I supposed to be leaning from all of this.
Is there something to learn.
Or does it all just suck and it's bad luck.
Is there a reason for all this.
Actually I think I have more questions than ever,
and a lot fewer answers.
At least I hope I have become a more understanding and sympathetic person,
not just more tired one.
By Nancy Stordahl
Do you ever wonder what great lesson(s) you’re supposed to have learned from cancer?
I have wondered.
This is another cancer expectation that’s out there and continuously perpetuated.
We’re supposed to learn from, and therefore potentially be grateful for, the life “detour” that is cancer are we not?
We are supposed to be transformed into a new and improved version of our former selves, right?
I often read articles about cancer survivors proclaiming to be transformed, enlightened, improved upon, bettered, or whatever.
It seems many have experienced some sort of epiphany.
And I’m happy for those individuals.
I mean that.
That is not sarcasm.
But it just hasn’t worked out that way for me.
Sometimes I wonder if perhaps I’m a slow learner or something.
Sometimes I wonder if someone forgot to give me my copy of the, “how to properly do and learn from cancer,” handbook.
That is sarcasm.
After five years, actually after ten years if I count my mother’s cancer experience,
I sometimes feel I should be enlightened about many things by now.
About what I have no idea.
I wish I did.
I really want to know…
And what is an epiphany anyway?
In this context, it’s generally defined as a revelation, a sudden manifestation, or realization about the meaning of something; an illuminating discovery.
Well, that has not happened for me.
Sure I have picked up some nuggets of wisdom during the past five years, but a lot, maybe even most of the stuff I have learned from and about cancer, is totally shitty stuff.
In fact, I was thinking about writing a blog post with that exact title – 10 Shitty Things Cancer Has Taught Me – or something like that. There are way more than ten things too.
But I probably shouldn’t publish such a post if I should end up writing it.
Maybe I shouldn’t have even published this one.
Because you know, the positivity police are always out there.
Okay, so I’m being rather sarcastic in this post and cynical and maybe even a little grumpy.
So what?
Sometimes I get weary of all the cancer expectations and cancer language nonsense out there,
much of which makes no sense to me.
And okay, sometimes I get cranky too.
And I sure would like to know…
Where is my epiphany?
I feel this way a lot.
What am I supposed to be leaning from all of this.
Is there something to learn.
Or does it all just suck and it's bad luck.
Is there a reason for all this.
Actually I think I have more questions than ever,
and a lot fewer answers.
At least I hope I have become a more understanding and sympathetic person,
not just more tired one.
Sunday, March 6, 2016
A Battle NOT Lost
For the last little while I have been following the Joey+Rory story.
They are a husband and wife country singing duo.
I have never heard anything like her voice.
Calm, inspiring - just amazingly beautiful.
If you haven't heard her sing, youtube their name.
(I especially love these songs - That's Important to Me, In The Time That You Gave Me and When I'm Gone)
She has been in the news a lot since she was diagnosed with cancer.
It spread even though she did everything the doctors told her.
She endured the surgery, chemotherapy, and radiation.
Her husband has been writing about her journey, his feelings and their family.
(http://thislifeilive.com/)
He is an amazing writer.
I usually cry when I read his updates.
I think it is amazing to be able to convey that much love and feelings into words.
I hope to aspire to that one day.
This is an excerpt from one of his latest blog posts:
In the 40 short years that Joey has lived, my bride has accomplished many great things… she’s lived a very full life. But even more than that, she has loved those around her greatly and been loved greatly in return. I can honestly say that Joey’s isn’t just a life well-lived, it’s a life well-loved.
God only gives each of us a certain amount of time to be on this earth and every day when we wake up, we get to decide how we are going to spend those precious minutes and hours. There are no do-overs, no second-chances, no next-time-arounds to get it right. Joey knew this and she has made each and every day count. One of the last things Joey said before she drifted into the deep sleep she’s been in for a few days now is, “I have no regrets… I can honestly say, that I have done everything I wanted to do and lived the life I always wanted to live.”
The day she passed away I saw on the news feed that someone wrote, "She has lost her battle with cancer."
For some reason that wording bothers me.
Saying someone lost makes it sound like they didn't fight.
She was giving all she had to be with her daughter and husband.
Saying it was a battle makes it sound like she signed up for it.
NO one would ever sign up for this kind of "battle".
I read this somewhere -
When I die don’t think you’ve lost me.
I’ll be right there with you, living on in the memories we have made.
When I die don’t say I “fought a battle.” Or “lost a battle.” Or “succumbed.”
Don’t make it sound like I didn’t try hard enough, or have the right attitude, or that I simply gave up.
When I die don’t say I “passed.”
That sounds like I walked by you in the corridor at school.
When I die tell the world what happened.
Plain and simple.
No euphemisms, no flowery language, no metaphors.
Instead, remember me and let my words live on.
Tell stories of something good I did.
Give my children a kind word. Let them know what they meant to me. That I would have stayed forever if I could.
Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:
There is no better place to me than being here with them.
They have learned about grief and they will learn more.
That is part of it all.
When I die someday just tell the truth:
I lived, I loved, I died.
The end.
I am not sure why their story has reached me so deeply.
Maybe because I just hate cancer.
Maybe because she was about my age.
Maybe because she had a young child.
Maybe because she seemed like such an amazing person full of grace, love and faith.
I hope to aspire to be like her.
They are a husband and wife country singing duo.
I have never heard anything like her voice.
Calm, inspiring - just amazingly beautiful.
If you haven't heard her sing, youtube their name.
(I especially love these songs - That's Important to Me, In The Time That You Gave Me and When I'm Gone)
She has been in the news a lot since she was diagnosed with cancer.
It spread even though she did everything the doctors told her.
She endured the surgery, chemotherapy, and radiation.
Her husband has been writing about her journey, his feelings and their family.
(http://thislifeilive.com/)
He is an amazing writer.
I usually cry when I read his updates.
I think it is amazing to be able to convey that much love and feelings into words.
I hope to aspire to that one day.
This is an excerpt from one of his latest blog posts:
In the 40 short years that Joey has lived, my bride has accomplished many great things… she’s lived a very full life. But even more than that, she has loved those around her greatly and been loved greatly in return. I can honestly say that Joey’s isn’t just a life well-lived, it’s a life well-loved.
God only gives each of us a certain amount of time to be on this earth and every day when we wake up, we get to decide how we are going to spend those precious minutes and hours. There are no do-overs, no second-chances, no next-time-arounds to get it right. Joey knew this and she has made each and every day count. One of the last things Joey said before she drifted into the deep sleep she’s been in for a few days now is, “I have no regrets… I can honestly say, that I have done everything I wanted to do and lived the life I always wanted to live.”
The day she passed away I saw on the news feed that someone wrote, "She has lost her battle with cancer."
For some reason that wording bothers me.
Saying someone lost makes it sound like they didn't fight.
She was giving all she had to be with her daughter and husband.
Saying it was a battle makes it sound like she signed up for it.
NO one would ever sign up for this kind of "battle".
I read this somewhere -
When I die don’t think you’ve lost me.
I’ll be right there with you, living on in the memories we have made.
When I die don’t say I “fought a battle.” Or “lost a battle.” Or “succumbed.”
Don’t make it sound like I didn’t try hard enough, or have the right attitude, or that I simply gave up.
When I die don’t say I “passed.”
That sounds like I walked by you in the corridor at school.
When I die tell the world what happened.
Plain and simple.
No euphemisms, no flowery language, no metaphors.
Instead, remember me and let my words live on.
Tell stories of something good I did.
Give my children a kind word. Let them know what they meant to me. That I would have stayed forever if I could.
Don’t try to comfort my children by telling them I’m an angel watching over them from heaven or that I’m in a better place:
There is no better place to me than being here with them.
They have learned about grief and they will learn more.
That is part of it all.
When I die someday just tell the truth:
I lived, I loved, I died.
The end.
I am not sure why their story has reached me so deeply.
Maybe because I just hate cancer.
Maybe because she was about my age.
Maybe because she had a young child.
Maybe because she seemed like such an amazing person full of grace, love and faith.
I hope to aspire to be like her.
Wednesday, February 24, 2016
In the Clear
So if you didn't see my Facebook post a while ago -
The MRI came back all clear.
Wahoo!!!!!
(The waiting just about killed me though.)
They found no visible signs of cancer.
They did see a little disk degeneration in my neck
and sinusitis (a sinus infection),
so I got another prescription to take,
but no real reason as to why I am having these constant headaches.
I see my oncologist in a month and we will talk about further options then.
I am guessing he will offer me another medication,
which I will decline.
Or maybe I will get it filled just to have on hand when they get really bad.
Other than that, life continues.
Gage is getting so big and into everything.
He acts like he doesn't hear the word "no".
Alyssa is loving school and dance.
She is starting to get a little attitude.
Kaden is the best kid.
Such a great helper.
Abby is getting very independent.
I can't wait until she can babysit!
Ryan is working hard as always.
Just finished the Parade of Homes.
Hoping to see him at our home a little more now.
Spring is almost here and I am not ready for the summer.
I actually love the winters here.
Here's to hoping for a vacation soon.
The MRI came back all clear.
Wahoo!!!!!
(The waiting just about killed me though.)
They found no visible signs of cancer.
They did see a little disk degeneration in my neck
and sinusitis (a sinus infection),
so I got another prescription to take,
but no real reason as to why I am having these constant headaches.
I see my oncologist in a month and we will talk about further options then.
I am guessing he will offer me another medication,
which I will decline.
Or maybe I will get it filled just to have on hand when they get really bad.
Other than that, life continues.
Gage is getting so big and into everything.
He acts like he doesn't hear the word "no".
Alyssa is loving school and dance.
She is starting to get a little attitude.
Kaden is the best kid.
Such a great helper.
Abby is getting very independent.
I can't wait until she can babysit!
Ryan is working hard as always.
Just finished the Parade of Homes.
Hoping to see him at our home a little more now.
Spring is almost here and I am not ready for the summer.
I actually love the winters here.
Here's to hoping for a vacation soon.
Tuesday, February 9, 2016
The Price of Peace of Mind
It's nothing.
It will go away.
I am fine.
Well, maybe it could be something.
What if it is?
What if it's bad...
These thoughts run through my head all the time.
If get an ache or pain or headache.
A headache that lasts for weeks.
One that will not go away.
I want to remain positive and hope that it is nothing.
But I also know the reality and statistics of my type of cancer returning.
I really don't want to be blind-sided again.
So today I went in for a MRI of my head and neck.
I really don't like MRI's.
The contrast as it is injected hurts,
the machine is beyond loud,
and laying completely still in a metal tube is claustrophobic.
Should I be worried that after I told my doctor my symptoms, he put a rush status on it?
I needed to be seen within 2 days!
The poor techs had to give up their lunch because they were booked and
noon was the only time it could be done.
Answers will be nice. Although I am not sure I really want to hear what they are.
The doctor should call me before close of business tomorrow.
Or I can call on Thursday.
So much for my New Year's resolution.
I was hoping to not meet our high deductible again this year.
I guess that is what peace of mind is worth.
It will go away.
I am fine.
Well, maybe it could be something.
What if it is?
What if it's bad...
These thoughts run through my head all the time.
If get an ache or pain or headache.
A headache that lasts for weeks.
One that will not go away.
I want to remain positive and hope that it is nothing.
But I also know the reality and statistics of my type of cancer returning.
I really don't want to be blind-sided again.
So today I went in for a MRI of my head and neck.
I really don't like MRI's.
The contrast as it is injected hurts,
the machine is beyond loud,
and laying completely still in a metal tube is claustrophobic.
Should I be worried that after I told my doctor my symptoms, he put a rush status on it?
I needed to be seen within 2 days!
The poor techs had to give up their lunch because they were booked and
noon was the only time it could be done.
Answers will be nice. Although I am not sure I really want to hear what they are.
The doctor should call me before close of business tomorrow.
Or I can call on Thursday.
So much for my New Year's resolution.
I was hoping to not meet our high deductible again this year.
I guess that is what peace of mind is worth.
Wednesday, February 3, 2016
Something For Me
Just a little present I bought for myself.
Four hand-stamped silver bracelets.
Survivor
♥ Fighting For My Family♥
; my story isn't over yet
~ Don't look back, you're not going that way~
I really like looking down at them.
Simple, yet they make me smile.
Four hand-stamped silver bracelets.
Survivor
♥ Fighting For My Family♥
; my story isn't over yet
~ Don't look back, you're not going that way~
I really like looking down at them.
Simple, yet they make me smile.
Friday, January 29, 2016
Your Hair Looks Great
Guess who had a haircut!
Ok, I don't really think I can call it that, maybe a trim.
Nope, probably not that either.
My friend, who also does hair out of her home, cut a tiny bit of hair off the back.
Maybe between a 1/4 and an 1/8 an inch.
Almost not worth mentioning,
but I was excited about it.
It is starting to get a bit mullet-ish looking.
Ryan does love my afro when I wake up though.
I read this the other day and thought it felt pretty actuate, kinda long and a little harsh, but true.
I am struggling with the way my hair looks.
Even though everyone tells me it looks cute, I don't think so.
I don't really feel like me when I look in the mirror.
I miss hair clips and pony tails.
I miss my long hair.
Your Hair Looks Great
By Beth J. Caldwell
When I was a senior in college, I went home for winter break and decided I wanted to cut off my long hair.
It had been long for a few years, and I just wanted to do something different with it.
So, I went to my mom's salon and told the woman I wanted it cut short.
The conversation went something like this:
Me: I want to have it shorter.
Her: Super! You'd look great with a shoulder-length style.
Me: No, I mean short.
Her: Like a chin length bob?
Me: No, short. Like, above my ears. You know, short.
Her: Did your boyfriend just dump you?
Me: ...uh, no, I've been single for a while now.
Her: Are you flunking out of college?
Me: What?!?! No!
Her: Are you coming out or something?
Me: No, I'm straight, why do you keep asking me these questions?
Her: Because usually when people want to go from long to super short, it's because they had something bad happen or they're trying to make a big change in their lives.
Me: Wow. No, the only change I want to make is to the actual hair.
Her: Are you sure? Because, if I cut it that short, I mean, it'll take a long time to grow back out.
Me: Yeah, I'm sure. Seriously, can I just have it cut now?
Honestly, I got asked less questions by the minister when I was getting married than when I got that haircut.
People take their hair super seriously. A lot of our identity is tied up in it.
Which is why it seems to be the thing that people focus on when cancer happens.
I never really thought about it that much until my hair fell out during chemo last spring and
suddenly, my hair, or lack thereof, was a subject of conversation all the time.
I hate my hair now, because it wasn't my choice.
I didn't get asked 10,000 questions by my oncologist about whether I was sure I wanted to go bald.
Instead, he just told me the chemotherapy drugs would make it fall out.
Cancer does that to you.
A lot of the choices you used to get to make, you don't anymore.
Hair is just the most visible one of them.
I get zillions of compliments on my new 'do.
Even when people know I hate it, and even when they know I don't feel better
when they talk about my hair, they seem to be unable to stop themselves from saying how awesome my hair looks.
I get told I look great by practically everyone I know.
I have been trying to understand why people seem to have such a need to comment on my appearance.
Why do we tell the cancer patient "you look great"?
Why do we celebrate when a cancer patient doesn't look like Skellator?
I think it's this: When you have cancer, or any other life-threatening or terminal illness, people want you to be well.
They love you, and they don't want you to die.
So, they cling to every scrap of hope that you are going to beat your disease, and looking like you're not dying gives them that hope.
But the truth is, you can't tell that someone is going to be cured just by looking at them.
Lots of us folks with metastatic cancer are living with our disease for now, and we look and feel OK for now, but the truth is that we're going to die of this unless there is a miracle breakthrough in our now-shortened lifetimes.
That our hair is growing back isn't necessarily the sign of wellness people assume it is.
And for me, living with everyone else's hope is hard. I'm living with my doctor's hope that science will find a cure in time for me, when we don't seem to be putting enough resources into research. I'm living with my husband's hope that we'll die together in a nursing home in our 90s, when even the most optimistic estimates of my life span rule that out. I'm living with my former coworkers' hope that I'll get well and come back to work with them, when I am probably going to be too busy with doctor appointments the rest of my life to ever hold down a job. I'm watching everyone around me needing to hope I will be well and somehow beat this thing, but knowing I will let them down someday.
And so they say how great I look right now, and how cute my hair is, because they have hope. And inside I want to scream. I want to say, "Wake up! This is going to kill me. There is no silver lining to this. It's not cute. Every bit of this is ugly. Every bit of this is ugly." But I don't say it, and instead, I make small talk about how lucky I am to have a nicely-shaped head.
And I hope it won't be too hard for them when it turns out that looking good can't cure your cancer.
Ok, I don't really think I can call it that, maybe a trim.
Nope, probably not that either.
My friend, who also does hair out of her home, cut a tiny bit of hair off the back.
Maybe between a 1/4 and an 1/8 an inch.
Almost not worth mentioning,
but I was excited about it.
It is starting to get a bit mullet-ish looking.
Ryan does love my afro when I wake up though.
I read this the other day and thought it felt pretty actuate, kinda long and a little harsh, but true.
I am struggling with the way my hair looks.
Even though everyone tells me it looks cute, I don't think so.
I don't really feel like me when I look in the mirror.
I miss hair clips and pony tails.
I miss my long hair.
Your Hair Looks Great
By Beth J. Caldwell
When I was a senior in college, I went home for winter break and decided I wanted to cut off my long hair.
It had been long for a few years, and I just wanted to do something different with it.
So, I went to my mom's salon and told the woman I wanted it cut short.
The conversation went something like this:
Me: I want to have it shorter.
Her: Super! You'd look great with a shoulder-length style.
Me: No, I mean short.
Her: Like a chin length bob?
Me: No, short. Like, above my ears. You know, short.
Her: Did your boyfriend just dump you?
Me: ...uh, no, I've been single for a while now.
Her: Are you flunking out of college?
Me: What?!?! No!
Her: Are you coming out or something?
Me: No, I'm straight, why do you keep asking me these questions?
Her: Because usually when people want to go from long to super short, it's because they had something bad happen or they're trying to make a big change in their lives.
Me: Wow. No, the only change I want to make is to the actual hair.
Her: Are you sure? Because, if I cut it that short, I mean, it'll take a long time to grow back out.
Me: Yeah, I'm sure. Seriously, can I just have it cut now?
Honestly, I got asked less questions by the minister when I was getting married than when I got that haircut.
People take their hair super seriously. A lot of our identity is tied up in it.
Which is why it seems to be the thing that people focus on when cancer happens.
I never really thought about it that much until my hair fell out during chemo last spring and
suddenly, my hair, or lack thereof, was a subject of conversation all the time.
I hate my hair now, because it wasn't my choice.
I didn't get asked 10,000 questions by my oncologist about whether I was sure I wanted to go bald.
Instead, he just told me the chemotherapy drugs would make it fall out.
Cancer does that to you.
A lot of the choices you used to get to make, you don't anymore.
Hair is just the most visible one of them.
I get zillions of compliments on my new 'do.
Even when people know I hate it, and even when they know I don't feel better
when they talk about my hair, they seem to be unable to stop themselves from saying how awesome my hair looks.
I get told I look great by practically everyone I know.
I have been trying to understand why people seem to have such a need to comment on my appearance.
Why do we tell the cancer patient "you look great"?
Why do we celebrate when a cancer patient doesn't look like Skellator?
I think it's this: When you have cancer, or any other life-threatening or terminal illness, people want you to be well.
They love you, and they don't want you to die.
So, they cling to every scrap of hope that you are going to beat your disease, and looking like you're not dying gives them that hope.
But the truth is, you can't tell that someone is going to be cured just by looking at them.
Lots of us folks with metastatic cancer are living with our disease for now, and we look and feel OK for now, but the truth is that we're going to die of this unless there is a miracle breakthrough in our now-shortened lifetimes.
That our hair is growing back isn't necessarily the sign of wellness people assume it is.
And for me, living with everyone else's hope is hard. I'm living with my doctor's hope that science will find a cure in time for me, when we don't seem to be putting enough resources into research. I'm living with my husband's hope that we'll die together in a nursing home in our 90s, when even the most optimistic estimates of my life span rule that out. I'm living with my former coworkers' hope that I'll get well and come back to work with them, when I am probably going to be too busy with doctor appointments the rest of my life to ever hold down a job. I'm watching everyone around me needing to hope I will be well and somehow beat this thing, but knowing I will let them down someday.
And so they say how great I look right now, and how cute my hair is, because they have hope. And inside I want to scream. I want to say, "Wake up! This is going to kill me. There is no silver lining to this. It's not cute. Every bit of this is ugly. Every bit of this is ugly." But I don't say it, and instead, I make small talk about how lucky I am to have a nicely-shaped head.
And I hope it won't be too hard for them when it turns out that looking good can't cure your cancer.
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