Tag Archives: inflammatory breast cancer

Decisions

Most women are pretty critical of their bodies.  We complain about our hips or our nose or our saggy breasts.  Then someone goes to take our breasts away and we cry and scream in our pillows for the flawed breasts we once had.  I wish I was the woman who said “good-riddance” and never looked back, but I’m not.  I still cry for my saggy, imperfect mammary glands that seemed so flawed at one time and now seem as majestic as the seven wonders of the world (minus the cancer that then overcame them).

But since I can’t have my God-made wonders back, I am going to settle for man-made.  I have to, what other option do I have other than nothing? 

The creator of my man-made wonders, my ever so kind plastic surgeon sat with me as I complained yesterday.  Which I feel a bit bad about now since these are his creations.  But he took it all well.  We revisited the fact that I had inflammatory breast cancer, which in the end caused him to tell me that he would not do fat transfer on me.  I’m still coming to terms with this since I really (really!) like the idea of moving fat from somewhere else to fill in the new breasts and their flaws and the indentation caused by digger.  But he won’t.  He was nice about it, and he gave a pretty good reason and that is, because I’ve had IBC, if I did have a reccurence it would probably effect my skin, and having extra fat in that area would cause necrosis.  Which would mean more “digger” type issues….and Lord knows I don’t want another digger!

So my option is small implants.  This would fill out the flaws and the indentations and make me just a tad bigger.  It would also help pancake resemble righty.  I really don’t want to be much bigger, but he said in perportion to my size, a little bit bigger would be good.  Plus I have lost some weight since the surgery and I think I lost some in my breasts as well.

You’all know I have not wanted implants.  This option is not all that exciting for me.  He looked me in the eye and vowed that saline implants were safe.  He answered the question we all have….”would you recommend this to any female in your family” and the answer was yes.

We agreed I would sit on this for a while.  I’m not in any hurry to make this decision and since digger only finally, completely closed about a week ago, I should wait.  So I think it could be several months before I make a final decision regarding the implant option. 

He showed me more pictures because I am a little sad about how the scars look.  I told him my fears about having the nipples put on and how I just am pretty sad with my lumpy, scar-y, breasts.  I wonder sometimes if I’ll ever adjust to the new ones and the new look.  I’ve tried sunless tanning and pretty bras, but nothing seems to make me feel better about them.  They’re just not my old ones and I still have a hard time with that.  Can anyone relate to this?

He was very nice to me once again.  Who knew plastic surgeons also had to be psychiatrists.  He seemed pretty confident that I would eventually adjust.  And I had no idea this fix-up deal would be such a long process.  I’m really glad he had me look at more pictures, and I took special note of how long it was from before to after.  Several of them were two years later and the scaring was significantly lighter.  He even showed me one that had a DIEP and then implants and I have to say she looked pretty good.

So I have some decisions to make.  There’s no hurry.  There’s no cancer.  There’s just me adjusting to something new once again and deciding how and when to proceed.

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Good Overload

I just got home from my second Willow Creek Leadership Summit.  Once again I feel like someone has removed every living brain cell in my head and I’ve been left with mush.  I will collect myself in the coming days.  I never know weather to cry, dance or take a nap after these two intense days.  Yesterday, after my 8 hour leadership infusuin, I went running.  It may have been my most powerful run yet.  I probably should have (blush)…..oh….ya know.  Something about being inspired makes me feel like I have to get energy out.  Either that or it was sitting all day. 

But really.  How can I sum this up for you.  So much great info, so little time.  Here are my thoughts at the current moment, tomorrow may be different….lol!

1.  There are some people who are doing amazing things where they are.  I don’t know if they’re doing it for Jesus, for themselves or for humanity.  But the way they’re helping people is incredible.  I’ve had to question what I’m doing and who I’m doing it for. 

2.  And back to that whole breast cancer thing.  I can’t help wonder what God has saved me for.  Maybe it was for my kids.  I don’t know.  I don’t have anything profound to say about that other than it moves around in my brain a lot.  I suppose if I could choose to do anything, now that I’m recovered, is email my oncologist at U of M, Sophia Merijver and see if she can pack me away in her suitcase on her next trip to Northern Africa so I could do something for the outrageous number of women who are getting Inflammatory Breast Cancer.  I don’t know what I’d do there, maybe I’d just hug them and cry with them, tell them I’ve been there too.  I’m still working that one out in my mind.  I suppose writing her would be OK, but I might get in the way.  I need a better plan.  I’m taking a class this fall at our local community college to see if I can make it in to nursing school.  I can get a second BA in a year and then midwifery in the next year.  It would be two years full time.  Maybe then she would pack me in her suitcase?

3.  My favorite speaker was a young woman who was cute and young and giggly and girly and super smart.  You gotta love it.  This is where our churches just DON”T GET IT!  Women……crazy……but true……can be great leaders (and they don’t have to look or act like men to do it either)!  Not only that but the world is waiting to see us equally partnering in ministry across the board.  Thank heavens an amazing place like Willow Creek who is changing the face of Christian leadership GETS THIS.  Because unfortunately most churches out there don’t.  (Yes this is my little soap box).  So it wasn’t surprising that one of the most amazing interviews they did was with a young woman named Jessica Jackley who helped start KIVA.  If you haven’t heard of this organization, you should check it out.  You an I can lend as little as $25 to people in third world countries so they can start businesses.  Pretty cool, pretty easy, yet the money goes so far.  She shared how one woman was able to send her daughters to school.  And these aren’t big things, these are small businesses, like buying beads to make necklaces they can cell or making peanut butter. 

So those are some of my thoughts.  I have more, but I can’t remember right now.  It’ll probably come to me later.

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Resiliency

And we rejoice in the hope of the glory of God. 

Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance;

                                                                                                     perseverance, character; and character, hope.

And hope does not disappoint us,

                                 because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. 

                                                                                                                                                                  (Romans 5:2b-5)

I love the words “and hope doesn’t disappoint us”.  I was just sharing my story last night with someone over the phone (hi patty) and we were discussing the hope we have through Christ.  It’s undoubtedly the reason I made it through the initial dark days of this cancer journey.  And not a random hope, but a hope in Christ who died a horrible death to bridge the gap for me. 

I don’t browse the parenting sections of my library and book stores the way I used to.  Now that I have three kids I have relaxed a little on my need to be a perfect parent.  It’s so much more enjoyable this way….lol!  But one book always stood out to me and I always think I should read it…..and still haven’t.  I don’t fully remember the name, but it basically was a book about raising “resiliency” in your children.  Through this cancer journey a thought has reverberated through my skull a time or two.  I would think “am I resilient enough to handle this?”   And even now, I ponder if I am truly resilient enough to get my life back in order?  I don’t know what the book says, but maybe someone with resiliency has the tenacity to fight back, or maybe they resist depression.  Or maybe it’s that they brush the dirt off their knees after it’s all said and done and they get back on the bike. 

Maybe it’s that they carry a deeper sence of hope.  Maybe they really aren’t any more resiliant than anyone else, but they clung to hope through the storm and in the end it didn’t dissapoint.  Hope was the rock through it all.

I’ve been trying to brush the dirt off my knees lately.  Some days are better than others.  When I was out running the other day the sky looked huge and blue, with barely a cloud in the sky.  It was a majestic moment.  And I thought, wow, If God can create this, and he can heal my cancer, certainly he can carry me through emotional healing at this point in my life. 

It was a moment of hope.  It was a moment of resiliency.

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Discovery Health: The Breast That Changed Color

Hmmmm….this sounds vaguely familiar.  So glad IBC is getting out there, so sorry someone had to experience this to be on the show.

I’m definitely watching…..and I think I’ll get the dx right, how ’bout you?  Don’t miss it starting August 10th.

http://health.discovery.com/tv-schedules/series.html?paid=62.14341.120601.29206.x&start=20

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Gene In IBC Identified

It’s just good to read the studies that are going on out there for inflammatory breast cancer.  Here’s an excerpt from the article:

“The Cancer Institute at NYU Langone Medical Center have identified a key gene—eIF4G1—that is overexpressed in the majority of cases of IBC, allowing cells to form highly mobile clusters that are responsible for the rapid metastasis that makes IBC such an effective killer.”

“….there has been little progress in treating IBC over the past two decades, and there are no drugs specifically for this form of cancer. In fact, IBC has only recently been recognized as a unique, genetically distinct form of breast cancer.”

You can read more here.

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My Endearing Breasts

I didn’t ask my plastic surgeon many questions before my surgery.  I’m still surprised by this.  I usually have tons of questions.  I think this is because I met with someone who had the DIEP flap and spent several hours with her.  It’s been so nice to meet others who are having this surgery or who have had this surgery because it’s not very common.  I think I have more questions now than I did before!   The one thing we had never discussed before the surgery is how big I wanted to be.  I remember thinking “doesn’t he need to know what size I want to be?” 

So as we went in to surgery, I made one request of him.  I said “you can take every bit of fat you can possibly get off of me, but please don’t make me any larger than a C.  I want to run in the future.”  The resident anesthesiologist got a smile on her face when I said this…..I said “you know what I’m talking about!”  If you like to run, anything bigger than a C, just gets in the way. 

Here’s what he said.  “I’m going to take this section (pointing to my left side belly) and turn it and put it on the right side chest, and I’m going to take this section (pointing to my right side) and flip it and put it on the left side chest.”  He said after the surgery we would decide if I needed to be bigger, or I suppose smaller. 

The great thing about remembering to tell him my last request is he gave me a REALLY GREAT tummy tuck.  He left nothing behind:)  And he told me that he took everything I had to make my small B breasts.  I think this is a compliment.  I really don’t want to know that I had enough baby belly fat to make a size D or something like that.

Here’s the funny thing about my flap flip.  I now have a mole that was on my left belly.  It is now on my right breast. 

I had been thinking about having it removed but I think it will stay.  Here’s why:

Before I had my mastectomies I had a few moles on my chest area.  This might be too much info for some, but I remember when I was first learning to breastfeed my first baby, my sister and Jeremy all laughed at the placement of one of my moles.  (She is a La Leche League Leader and lactation consultant, so she’s allowed to look closely at my breasts…..lol)  So when I had my mastectomies, I remember thinking that I was losing some of the quirky little things that give my breasts character and that Jeremy found endearing.

I’ve decided that I need to start finding the quirky little things about my new breasts endearing.  Like the new mole on my right breast.   Or the way my cleavage is uneven. 

I want to look at the scars as endearing reminders of my strength and tenacity.  I want the whiteness of my transplanted flaps to remind me of clean and clear breasts and being cancer free.  I want the little cinched up gatherings on each side of my breast to remind me that it is quite possible I will never have saggy breasts in my life because they have reinforced them so much….lol!

I’m working on it.  I’m reminding myself that my new breasts have given me character, not just physically, but spiritually and emotionally as well.  I am trying to look at them not as the way we are programmed in our current culture to look at physical beauty but through my own lenses and to appreciate what it has taken for me to get here.

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Please, Don’t Join This Club

Last week I got a call from a woman down the street who I have met briefly.  She was calling to tell me a woman she knows was diagnosed with the same cancer I have.  Whenever I hear this I always think “yea right, whatever” because it’s never IBC.  It’s always something that sounds like IBC, like invasive breast cancer or inter-ductal breast cancer, which are all bad, but they aren’t exactly the same.  Most people do not have inflammatory breast cancer…..which is actually a good thing.  But this time, I’m sad to say I was wrong. 

Another woman, only 38 has been diagnosed.  I spoke with her on Thursday and by Friday she knew she was stage 4 because her bone biopsy came back positive.  If you want to follow along with her journey, she keeps a journal here:

http://www.caringbridge.org/visit/lorihernandez

Many of you prayed me through my cancer journey so I’m sharing this in hopes you’ll do the same for Lori.

And while I’m thinking about it…..if you have been diagnosed with Inflammatory Breast Cancer and you’ve somehow stumbled upon my little blog, I started a yahoo group that is small, but a good place to ask questions.  Please feel free to join us, but to be quite honest, I’d rather you not, that is unless you have to.  This club is really no fun.

Inflammatorybreastcancer-subscribe@yahoogroups.com

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Go Hornets! (Deuteronomy 7)

A woman at church (thanks Jackie Herr)  sent me a letter in the days following my diagnosis and prayer service that got me thinking.  I was drawn to the image she gave me when she shared this passage.  She said the words kept going through her head as they prayed for me.  If you go to Deuteronomy 7 you’ll read about God’s promises to the Israelites through Moses….that he will provide land for them as He had promised and not only that, but He would send Hornets (7:20) to make sure that any survivors would be driven out.

This is the end of their time wandering, they’re at the cusp of all they’ve been waiting for.  Surely they are filled with doubt.  Surely they want to run to other idols and other God’s for protection.  This has certainly been a long 40 years for them.  Many of them certainly don’t even remember the provisions of God in Egypt.  But Moses isn’t going to let them forget.  Deuteronomy is full of hope, it’s reflecting on what has been and what God plans to do for the Israelites.  The cards are stacked against them, their giants are larger, the rivers are wider, the mountains are higher, but that doesn’t matter to a powerful God.  He’s got a plan.  He won’t let one minute detail go by the wayside.

“These nations are stronger than we are, how can we drive them out?” (7:17)

“The Lord will keep you free from every disease, He will not inflict on you the horrible diseases you knew in Egypt.” (7:15)

The thing about inflammatory breast cancer that is different from normal breast cancer is its ability to travel and hide.  Many people can’t understand why I didn’t have a complete and radical mastechtomy first and then chemo.  It’s because my breast cancer basically started in my lymph nodes.  A bunch of naughty cells clumped together and created a waste block for my breast….so rather than a lump my cancer runs through my entire breast in sheets…..it basically effects the whole breast and all the skin.  Then there’s the issue of the lymph nodes and escaping cells.  IBC travels fast….very fast….and is often too late once it’s diagnosed (mine was diagnosed early and that is a VERY good thing).  Doing the chemo first ensures that all those naughty stray cells get zapped first.  That way when they take everything….there isn’t one hiding.

I’ve got chemo, modern medicine and radiation.  I can read about all the current complimentary therapies…..but above that I’ve got a powerful, all knowing….and “I can see that minute stray cell kind of God….He will send the hornets!”  This passage has given me so much hope….He wants our obediance and our devotion to Him and in return He will provide our needs…..he doesn’t miss a thing!  Regardless of my future He has a detailed plan that involves so much that I will never understand.

Jackie ended her letter with the following phrase….and I find it so fitting as I face the overwhelming giant ahead of me!  It’s my battle cry!

Go Hornets!

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Hello World!

This is my first blog.  I won’t be daring enough to send this out until I’ve got this sort of figured out.  If you’re wondering about me…..I’m a 36 year old mom of 3 beautiful kiddos.  Charis is almost 7, Meleah is 3 and Elijah just turned 1 in January.  I’m married to a pretty cool guy named Jeremy.  We met while both working at Ichthus Christian Music Festival and were married a year later.  I knew from the day I met Jeremy that he was a great guy…..and I was right.  He has been such a strong advocate for me in ministry and now in my breast cancer fight.  That leads me to the BC.  I was diagnosed with a rare and rather serious type of breast cancer called inflammatory breast cancer on February 3rd.  I did the usual thing….thought I had a plugged duct or mastitis for several months until I got serious about it and insisted on an appointment at my Ob office.  I NEVER ever thought it was BC.  I’m so thankful I was persistent about the appointment because we caught it early.  It’s in both breasts, but did not spread and thankfully is not in my bones, lungs or brain.  It is an extremely fast spreading cancer….quite often by the time it is found it is often too late.  Seriously.  I hope to eventually advocate so that more receptionists understand how serious IBC can be.

On another note…..I’m a birth junkie.  It has been my passion since my first daughter was born.  So you might hear me gab a bit about that here.  But mostly I think I’ll just share my spiritual reflections through this dark journey and how I’m growing and healing, emotionally and physically.  It will be good accountability for me and how God is changing me and moving me and deepening my faith in Him.

Thanks to all who read and travel this road with me.  I just feel God walking ahead of us clearing the path.

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