Pony Tails

22 months post chemo. Finally. It’s going to be a pony tail summer.

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Light’en Up

A few nights ago I was going through our digital pictures on the computer.  I have to do this because I’m pretty sure we’ve never actually printed out any of our pictures. It’s on one of my to-do lists to-do when my kids are a bit bigger and I have more time. Whenever that might be.

It was such a lovely walk down memory lane. It made my heart sad and glad, all at the same time. Looking at my children when they were super little. Oh, how my uterus screams for more. I really do wish I could have one more cuddly little baby. One more birth. Oh how I miss those days. (Don’t feel bad for me. I knew I was done after three BEFORE I had cancer, so I’m not blaming cancer on this one)

One thing I noticed about the pictures of my children from before I had cancer is how nicely they were dressed and how they always had their hair brushed, pulled in to cute pony tails and their and how their clothes matched.  They looked….well, almost perfect.

I barely remember those days.

And just today I was laughing to myself because this is how lunch went for the kids went:

I looked in the fridge. I looked for something healthy. I gave healthy options. Meleah wanted green beans. This request was semi-healthy, but from the can, not so sure. I had leftover green beans. I heated up leftover green beans and found some leftover french fries from the night before to go with them. She was happy. I was happy, no clean up. Paper plates.

So then, she eats three bites of each and announces she’s done. She leaves the table.

Here’s where Elijah, child number three comes in. He walks to the table, looks at his sisters leftover, leftovers and asks if this is his meal. I say “it’s sissy’s, but you can have it.” He says “Yay!” and he sits down and starts shoveling everything in.  A three for the price of one meal.  I like this.

Here’s a picture of him.

This could be a whole discussion about boys, and I’m quite sure he will be our dinner garbage pail as he grows older, but the point I’m trying to make here as a parent is: “lighten up”

I’m not even talking about discipline really, I’m talking about how we reflect our perfectionism on to our kids. Sure, we want our kids to grow up to dress appropriately, smell like they take bath’s and have at least some manners. But maybe sometimes we go overboard on it.

I call this transformation in my life “the before and after cancer transformation.” I find it totally evident in my parenting. I’m pretty sure if you asked Charis, my oldest, she would agree. I think she can remember how worked up about things I would get. I wanted her dressed perfect, her hair perfect. And I expected this all from a highly ADHD child. Oh my, was I a wreck then.

I insisted they eat perfect food, and although I’m still quite crunchy, I’ve even lighten’ed up there as well….obviously since my kiddo’s were eating french fries!

I still struggle with the perfect image. I take it really hard if I think someone is being critical of my parenting. This is why, even though I’m opinionated about parenting, I try to be understanding rather than judgmental. Parents are different and so are children. Most of my judgment is directed towards so-called parenting guru’s that insist on having it all figured out. I roll my eyes when I see titles that insinuate you can change your child in a week….yeah, and totally break their spirit while you’re at it! Or that your child can be happier than all the rest. And don’t get me started on the notible inexistence of books on parenting written by moms in mainstream media. Ummm….hmmm….sir, did you stay home with your children, and THAT’S why you can write this book with authority? Probably not. This only serves to depress parents (and moms) who don’t get the response they were looking or hoping for. It’s a pipe dream that can’t be met. We’re asking children to be adults and they are not.

We can all want the perfect baby and the perfect child, but it probably isn’t going to happen. Perfect children are rare and are usually only witnessed by friends of perfect parents (as in….wow, your child seems perfect.). Or, in some cases, they have been broken in to perfection because they have no choice in the matter. Which usually backfires in the long run.  A child that is afraid will either learn to be sneaky or be really bad decision makers as adults.

And you know, since this realization hit me, it has been so freeing as a parent. I love more, and I feel loved more. The anxiety has decreased which means my stress level is operational. I have more fun with my children. We are all healthier.

Cancer has helped me focus on bigger issues and to let go of the smaller ones.

So Elijah is allowed to get extra dirty and wet when playing outside. Clothes don’t really matter and if they can’t get dirty, you spent too much.  I am required to come see whatever he is doing these days.  He insists on showing me everything.  Standing on his head, connecting trains, something cool on the computer.  I must stop whatever I’m doing.  Sometimes I do and sometimes I don’t. 

And Meleah never ever matches when she dresses, and even though I have claimed Sunday as a “mommy-pick-day” it usually doesn’t happen. Or I go pick her dress and then she picks tights and shoes to go with it, which totally defeats the purpose of a “mommy-pick-day.”  I just try to remember she’s my budding “fashionista.”

And Charis. Oh my sweet Charis. She plays more with boys than she does with girls now because she’s a tomboy who doesn’t like sports I guess…..if there is such a thing. She’s my sweet, cute, blond, ADHD child who passes out sunshine like it’s candy. She finds treasures in everything and turns them in to art. She will get on her hands and knees in stores to find the treasures hidden under the shelves.

And instead of blowing a fuse. I just say over and over and over again. “Please get up off the floor sweetie.”

One day she will decide it is really not cool to crawl around on her hands and knee’s. But until then, I will continue to remind her.

And I’m not the only one who says “quit being a perfectionist.” God wants us to “de-stress” too. I have taken liberties if you don’t mind. Here’s what Matthew 6:31-33 says:

“If God gives such attention to the appearance of wildflowers—most of which are never even seen—don’t you think he’ll attend to you (your kids), take pride in you (your kids), do his best for you (your kids)? What I’m trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God’s giving. People who don’t know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don’t worry about missing out. You’ll find all your everyday human concerns will be met.

And isn’t that how it is. We’re worried about getting the perfect kids. He’s already given us the perfect kids.

Just. right. for. us.

So lighten up.

My Belly/Breast Cast. Seriously.

This story begins long ago, before cancer, when I was pregnant for Elijah.   Some of you might know that I loved childbirth.  Crazy, I know, but I did.  I wasn’t overly fond of pregnancy, especially the first and last trimester, so I suppose you might ask why I liked having babies?  It was the birth, all about the birth.  (I enjoy quick, extremely painful things, not drawn out low-grade pain. 

But I loved the miracle of birth.  Every one of my children was born naturally, and my last baby, Elijah was born at home during a cold January night.  Totally planned with a certified midwife.  It was beautiful. 

So as I was preparing to give birth to Elijah, it occurred to me that this was my last pregnancy and I should do something to remember it.  I had heard about belly casting, but always thought it would be expensive.  But I started reading about it and realized I could go and get paper mache materials at Michael’s and Jeremy could help me do it.  Actually, Charis and Meleah helped too.   A decision was made that we would do my belly and my breasts.  A decision I’m actually thankful for now.  Jeremy wrapped me in plastic wrap.  Something he’s always secretly wanted to do.  And the paper mache-ing began.  I remember it being a night of laughter and fun.  Me, 9 months pregnant, wrapped in paper mache goo.  And then I had to wait for it to dry….lol!

I didn’t realize how glad I would be to have that belly/breast cast. 

So when I was diagnosed with breast cancer, and we knew I was headed for a double mastectomy, my sister said….”maybe you should make a cast of your breasts.”  I remember thinking for a moment about that thought…..but then remembered I had my pregnancy cast buried in the basement and cried “I already have one!”

So there it’s been, down in the basement waiting for me to pull it out, dust it off and do something with it.

But WHAT should I do with it?

I remember looking at pictures on-line of women who decorated their belly cast thinking….”I have to come up with something cool.” 

And then the second question now is “where do you put something like a belly cast with breasts?”

I mean c’mon people….even YOU would feel a little weird if I invited you over for dinner, and there, displayed over the dining room table was my belly/breast cast, of which I have neither anymore.  Ummmm…..awkward.  I’m pretty sure you would either bust out laughing or try not to look at it.  The question is, which would you be….lol!

So what do I do with it?

Here's the first thing I did with my belly cast. I put my sweet little baby Elijah back in it for a photo shoot.

Maybe I should coat it in outdoor paint and make it a lawn ornament....for the back yard of coarse...lol!

Maybe I could make i t in to a bird bath. I think I've read "Once Upon a Potty" one too many times.

Maybe I could just wear it around for the fun of it. I think my plastic surgeon should see this, no wonder my belly was so flabby. I was HUGE!

I really want to do something with my belly.  I joke about it, and it is kind of funny that I have this belly cast, but now that I’ve had breast cancer it takes on more value for me. 

What I’d really like to do is have someone else decorate it for me.   Maybe they could decorate my cast AND me, like Michael Colanero does here at Breast Cancer Awareness Body Painting Project?  Such a cool thing he’s doing there.  Check out this video.  This one is censored, but the other’s aren’t so be WARNED!

I wish some place like this would paint my cast for me! 

And what’s up with painting casts of women who don’t have breast cancer.  What would be really great is if they offered casts to women who were about ready to lose their breasts!  What a cool gift!  But I get it.  There’s not much money in gifting a breast cast **sigh**.  And the point is to raise money for a cure….which of coarse I am 100% behind as well.

Just wish I could find someone to do something cool with my cast!  Hint, hint!

So if I do paint this thing myself.  What should I do?  Maybe I can make it in to a fruit bowl?

Thoughts on Radiation

I’m scheduled to start radiation (30 treatments) in two weeks. Everyone keeps telling me it’s a “piece of cake.”  Could you tell me a little more about your experience and give me any advice.

Sometimes advice is a peculiar thing.  On one hand I want to calm your fears, but on another, I should be honest.  Radiation wasn’t a walk in the park for me.   I actually go back and visit people I met in the chemo room and miss the nurses sometimes.  I don’t miss anything about radiation accept that I liked my doctor.  So the best thing I can do is be honest with you on my experience and tell you what went right and what didn’t go so well.

First, I don’t believe anyone can tell you exactly what it will be like for you.  Everyone is radiated differently.  I was told it would be “cake” too, and unfortunately it wasn’t.  Here is why it wasn’t easy for me.  I had inflammatory breast cancer.  This meant I had to be radiated from my chin to within an inch of my last rib and then it also wrapped around to my back and my upper back had some radiation as well.  This wasn’t cake because I had something like 8 fields they had to line up every day and every week they had to re-measure.  Here is a question you can ask your doctor:  how many fields will be radiated.  I can’t say for certain, but I think most is just one or two depending on if both breasts had cancer or not.  Both of mine did….**sigh**. 

The first time you go to radiation will take longer.  This is because they are measuring where you will be radiated.  They will re-measure every week because they have to, just in case you had weight loss/gain, etc.  You will have to remain perfectly still.  This is why, when you have your mold made you feel 100% comfortable, because you will be stationary in that mold during radiation.  My mold was horrible.  I must have been in a very awkward position after my mastectomies, because it dug in to me in one arm.  And both my arms would go numb.  I wasn’t allowed to move or they would have to totally start over…..whatever that meant.  All I know is they begged me to stay still.  I was in a lot of pain the first time.  They couldn’t even finish and I sat there under that huge machine and cried.  It was probably one of the saddest moments I remember during treatment. 

I dreaded measuring day.  But the other days did get better, and most of the time I would be out within an hour.  You will lay on a skinny bed and a very large machine will move around you.  You won’t feel any of the beams.  You probably won’t see any light even.  Every other day they may lay something over you.  This acts as a layer of skin so your actual top layer of skin gets nice and toasty.  That sounds horrible, but I’m pretty sure that’s what it’s for.

The best thing I did during radiation is to MOISTURIZE!  I religiously did this every night and every morning.  At night I used pure lanolin (you can buy this in the nursing mom’s area of Target called lansinoh or at a health food store).  It was super gooey, but I did it right before I went to sleep and then wore an old t-shirt over it.  It was mostly absorbed by morning.  Then I used aloe after my shower in the morning before radiation because it soaks in very fast.  I would also use grape seed oil sometimes at night as well.   My radiologist was very surprised I didn’t blister at all.  I just got red, and I wasn’t really miserable at all during the treatment.  I did start feeling burned in the last week. (I din’t use anything they gave me BTW)

I still have my tan lines.  I’m still red a year and a half later.  Mainly just a red strip under my breasts for some reason?  I fractured a rib a while back most likely because the bones get brittle from radiation.  I didn’t even realize it so it must not have been too bad. 

I really hope only your breast will be radiated and the fields will be minimal.  It will probably be much easier like your friends tell you.  But for me, it was hard.  I have a hard time saying which was more difficult, chemo or radiation.  I cried more, and prayed more for God’s strength during radiation than any other time during my treatment.  

I hope that wasn’t miserably honest.  I didn’t like radiation very much.  The actual treatment experience was far worse than what it did to me, I will say that…..if that makes sense.  The laying there, hands over head, etc.   I’d really like to tell you it was super easy, but then I wouldn’t be honest.  So I decided it would be best to be honest.  So I have been.  It doesn’t get worse than what I’ve said above.  I’m not hiding anything.  Hopefully that makes you feel better!

I can say with almost complete certainty that you will make it through.  Just not sure I would say it was “cake.”

And here’s the really great thing!  You will get through it!  It will be like you went on a really great tropical vacation and missed a spot when lathering on the sunblock…only you didn’t. (**sigh**)  I joke that they really need to make radiation rooms smell like a tanning salon because it feels like that when you go every day.  Maybe a little ambiance like the sound of waves crashing against the beach would help too. 

Here are a few links I wrote during radiation:

Save the Skin: Part 1

Save the Skin: Part 2

Picture Day

Surgery #4

It’s just me. Coming down off the excitement of driving over to meet with Dr. Plastic at Northwestern today so it’s late and I can’t sleep so I’m updating. I’m scheduled for round 3 (that’s 1 mastectomies and 3 reconstruction surgeries) on May 10th. He’s going to fix the right side that for some reason is not cooperating. It’s left over from my mastectomies so it’s really to the right of my breast. He’s also going to do a new procedure called fat grafting to increase my size. This means he’ll take fat from my thigh’s and move it to my breasts. (no offers please, he has plenty from my thighs to work with). It’s really amazing what the serious plastic surgeons are doing these days.

Since he’s also world renowned in his hand/arm nerve work, I asked him about the neuropathy in my arms. (he’s known for reattaching arms with feeling and for work with prosthetic arms with feeling). I have an increasing amount of numbness in my arms and hands. It doesn’t hurt, but is annoying. I’m so glad I asked him because he thinks I can get help through physical therapy. It may be reversable. It’s probably another side-effect of radiation. Gosh, I just love all the radiation side effects. Can I have a “do over.” I’m pretty sure I would refuse radiation. Ugh!

Hopefully the fat transfer will work the first time, otherwise there will be a second try. I know, you are all wondering why I do this to myself. Here is why:
A. I want everything in me to be me. I’m already screwed up so adding something else potentially screwy to my system scares me more than surgeries.
B. I want to be bigger. I’m sick of feeling like I need to apologize for feeling like I want to be the size I would normally be had I not had cancer.
C. I can. They have the technology, I have the fat. Put a great doctor in the mix and whamo…a new me.
D. Once the fat takes, it’s there for good. No rupturing, leaking, replacing. I’d like to grow old with set of breasts #2.

That, and I have a really nice day to myself. I’m starting to look forward to my trips over to Chicago. No kids. Trader Joe’s. A few stops at Starbucks. A stop at Michigan City Outlet. I come home a happy girl.

Bucket’s of Saturated Fat for the Cure

A few days ago I noticed a tweet that gave me a reason to pause and think.  It bothered me to say the least.  It reminded me of a game you play with your kids….what two things don’t go together.

See for yourself.  Can you pick out TWO things that should not go together?

If you said a breast cancer research foundation and fried chicken, you were right!  Here’s why…

Current research says that obesity is linked to cancer.   As much as I don’t like it, it just is.  We know estrogen is stored in fat and cancer grows on estrogen.  I’ve known plenty of thin people with cancer so this isn’t saying this is the ONLY way to get breast cancer, but it’s a sure link.  The more estrogen you have in your body in your life span, the higher your risk. 

Then there’s that recurrence risk.  Obesity is a clear risk for recurrence of many kinds of cancer, not just breast cancer.

So here I am, two years out from breast cancer, running 4-5 miles 4 times a week and trying to do yoga and weight lifting 1-2 times a week.  I eat as healthy as I possibly can.  I’ve never been super thin, in fact, I regret the weight gain that I allowed to sneak up on me during my pregnancy years.  I’ve got three kids under 9 and a life I want to live fully, so I watch the research and I try to do what I can to keep from recurrence.  It is very clear that a healthy diet and exercise are key. 

So I have to say as a breast cancer survivor, it was like a slap in the face, it was a blow to everything we work for as a breast cancer warriors to see the premiere breast cancer research foundation teaming up with the premiere fat-laden fast food restaurant (see announcement for double-down sandwich).   It just seems to me if I work hard to do the best I can do, Komen would consider the current research as well.  Ummm…..they are a “research foundation” now aren’t they?  Hmmmm.

This was a sell-out Komen.  Did you ask anyone with breast cancer how they would feel seeing that big pink greasy bucket of chicken?  Was someone going to lose their job if you didn’t raise cash quick?  I really don’t get it?  Research also shows smoking and alcohol consumption are clear links to cancer, so why not team up with Marlboro or Bud Beer?  It’s not just about money, and quite frankly, don’t raise money on the backs of research that is clearly linking to cancer promotion.  Please!

So I was excited to run in my local Race for the Cure coming up in April.  This is the first year I’ve been healthy enough to do it since my diagnosis in 2008.  But now I question my support of Komen. 

Now you know how I feel, how do YOU feel about it?

Meet Ned

I need to admit something.  There’s someone else in my life besides Jeremy.  His name is NED.  I met NED right around the time they removed my breasts.  In fact, it was my surgeon who introduced me to NED.  She was ecstatic, she thought we’d be a hit from the very start.  And she was right, I liked him.  He was handsome and clean.  I like clean.  At first I felt really relieved to meet NED.  I had this image in my mind of what NED would be like, perfect actually…. absolutely perfect.  I figured NED and I could go on living together and we’d be one big happy family.  I figured Jeremy would get used to this other person in my life.  I like NED and I figured he would too.

But after a while I realized that just like Jeremy, NED comes with his own issues.  I mean….you know, he looks clean, he wasn’t fat or anything like that, he fit “within the margins” of what a good-looking person should look like, but then he got kind of high maintenance on us.  For example, we’d just be going along alright, everyone getting along and he’d make a really big issue out of nothing.  He’d insist it was a problem and we’d have to stop everything and focus on NED.  Like he was the only one in our family.  Jeremy would take it in stride, but I’d get worked up.  Sure, I’d try to look cool and collected, but NED really was making me mad and sad all at the same time.  He can be very selfish sometimes.

Then sometimes NED would be so great we’d just forget about him.  We’d forget even that he was a part of the family.  We’d get going in the busyness of life and forget how great NED actually was and how much we liked having him around.  Sometimes we would get irritated with each other or we’d just plain ignore NED and yell at each other.  We really wanted NED to be a reminder of how much people matter, family matters, but sometimes he’d be so quiet we’d just plain forget.

NED was always great about accompanying me to all my doctor appointments.  Even after my plastic surgery and my little nip/tucks, he would remind me he was still here.  The doctor would come out of surgery and say something nice about NED like “so glad to see NED in surgery.”  This always made me happy. 

Sometimes I would get scared I lost NED, if he left for a little while I got nervous, but he never really actually left me.  After my scans or procedures, or little cancer scares, handsome NED would pop his head up over the scan machine and say “boo! you thought I was gone, didn’t you!”  And I’d laugh and give NED a hug.  Sometimes I’d even cry when I’d see NED.  It would make me so scared when I thought he was gone.

The kids are a little confused by NED, but they really don’t fully understand why he needs to be here.  Cancer was confusing to them too.  It’s better this way I think.  I don’t really want them to fully understand just yet.  Sometimes they ask me questions like “Why do you have to have cancer mommy?”  I remind them I don’t have cancer because NED came to live with us instead.  It usually resolves their curiosity until the next time they see me getting in the shower or changing my clothes and I have to remind them again why NED is here.

The truth is, Jeremy and I are best friends.  We’re inseparable.  When I want to share something cool that happened to me during the day, I think of Jeremy.  When I want someone to comfort me when I’m sad, I want Jeremy.  But I’m quite fond of NED.  I think NED is an important part of my life.  He’s not always easy to live with, but I’d prefer his moody nature, than to live without him.

So after two years with NED, we’ve decided he can stay, and we really hope and pray he decides to stick around too.

Here I am before we ever imagined NED coming in to our lives. I think if you would have told me about NED then I would have laughed at you!

 

Here I am right before NED moved in. If you really want to know how I know this....a. the saggy normal breasts. b. I would not be wearing this shirt post-mastectomy and c. the bald head stuble.

 

Here I am cuddling with Elijah. You can tell I enjoy having NED around. I think my face looks happier and healthier.

 

Here I am celebrating my new breasts with Jeremy and NED. Do I look happy or what? This is 5 days post-DIEP and yes, you do see a bit of cleavage!

Here I am leaning on NED. It's nice to feel somewhat normal again.

 

(NED is an abbreviation for No Evidence of Disease.  This is the term they give my cancer status.  I hope NED sticks around, how about you?)

Unslumping

Well, I need to apologize. For some reason I’ve been in a writing slump. I’m not sure if it was the busyness of vacation or believing I had bone mets that kept me uninspired, but I think I’m unslumped.

I liken it to sex for women. If we go for too long without it, it’s like we forget how to do it. We wonder if the mechanics even really still work. I won’t claim to know what men experience, but I really think this is true for women. And true for me when it comes to writing. The longer I go the more I slump. And to take this one embarrassing step further, I need both in my life. It’s not good to go too long without. Both are amazing stress relievers….you should try at least one of the above recommendations. One would make your husband very, very, um very happy indeed. Especially if there is a slump involved.

But I have some posts milling around in my head. But if YOU have a post milling around in your head for me, I would appreciate the inspiration as well.

Seriously, something to do with going through breast cancer? A question about the Bible. I’m your gal. Inspire me.

(And Jeremy….do not comment on this one because I KNOW you would be ever so willing to inspire me!)

Freak Out #11

Cancer HAS NOT spread to the bones.  Just thought I’d blurt it out right away.

Sometimes I feel like singing it. 

Most of the time I just feel such a sense of relief that I could just weep.  A good long cry for all the stress that’s been building up the past few days.

I want to thank everyone for putting up with my little scares here and there.  I suppose this is the life of breast cancer survivorship and I best get used to it.  I don’t necessarily like worrying friends and family, but I do count on you for prayers.  So thanks for checking my blog once in a while and putting up with my facebook updates.

Still don’t know how I fractured a rib under my armpit, but that’s ok.  It will heal.

“Liep-ing” Tall Buildings with a Single Bound

There was no bone scan today.  Yesterday I arrived home to an answering machine message telling me there was a “global shortage” of isotopes.  Not to be confused with isotones…..those are slippers.  An isotope is a radioactive nuclear medicine they inject in to you so your bones will glow like this. 

So they needed to reschedule with me.  Lovely.  I wasn’t anxious about this scan till the drive home yesterday from our vacation to the Outer Banks of North Carolina, and I was good and ready to get it OVER WITH!  I was not happy.  I have to prepare myself for these scans.  I have to reason with myself as to why it is better to inject myself with radioactive material than to ignore a problem I would frankly LIKE to ignore.  Canceling my impending “radioactive injection” is not kind.  Whoever makes isotopes needs to hire a few more people.  Sheesh!

So I called Bronson to reschedule.  They couldn’t get me in till Friday.  So I called Borgess, the other hospital here in Kalamazoo.  They decided they could get me in on Wednesday, but I would be bumped if they ran low on isotopes.  I don’t like to use my cancer card, but I was pretty sure since this request was coming from my family doctor and not my oncologist they were not aware of my history. 

So I emailed my oncologist.  When all else fails, email Marcia Liepman.  I swear, she is superwoman in disguise.  Seriously.  Just uttering her name strikes fear in the hearts of men.  OK, I’m just kidding.  She doesn’t have that much power.  Only enough to “liep” small buildings with a single bound.  Hmmm…..maybe it is the other way around.  We should ask her husband.  Either way she is my amazing hero.

To make a long “he said, she said” story short, my appointment is on Wednesday.  It is “firmly” placed at noon on Wednesday.  I’m pretty sure I will not be bumped thanks to the lovely word “Liepman.”

So if you feel like saying a prayer for me, Liepman can “liep” buildings, but God can move mountains. 

I’m trying to keep busy as usual.  I’ll keep you posted.