Sunday, June 30, 2013

and then I was Angelina

I've started an update post on my blog a zillion times but there's been so much to say I haven't been sure where to begin.  And then I wasn't sure what I should or could say online.  But I feel like I need to get it out there, so today is a personal post from me.

In March I was up to my neck in school.  I was student teaching full time with full control of the classroom, doing work samples and course work in the evening, doing an Action Research project, and thought I could also handle the coursework for the extra Reading Endorsement I was working on and the additional research / work sample, etc that goes with it.  And I'm a Mom, with little kids.  I busted home every day to beat the bus (and am thankful that my kids were one of the last stops so I could always make it home in time when my husband was on duty - my Spring student teaching placement was in a different school district, different town).

Suffice it to say, I was busy.  But I was managing things, and looking forward to May/June, because I would finally graduate.

And then my sister called.  My younger sister called and said she had a lump in her breast.  And then she called back and said she had cancer.

At first she called me Pollyana.  I was busy with the "you are going to be just FINE" and "you are a strong woman" and all that support, that I truly, truly feel.  I KNOW she's going to be just fine.

In determining her treatment options, my sister had genetic testing done.  She wasn't sure if she should have a lumpectomy, mastectomy, etc.  Her results came back positive for the BRCA1 gene mutation.  Basically this means that by the time she's in her 80's, she'll have an 80% chance of having breast cancer.  It also means a 40-60% chance of ovarian cancer.  Some other cancers are elevated because of this mutation but not significantly enough to have serious concerns.

Because of this, she opted for a double mastectomy because the chances of re-occurance are high and she didn't want to deal with Chemo twice.  We have a string of cancer passed down from my Father's side of the family.

That was the first blow.

I immediately scheduled appointments for my first mammogram, an abdominal ultrasound, etc.

Then she said her siblings needed to have genetic testing done, because we are 50/50 for having the same mutation.  My youngest sister went next and her results came back Negative for this gene mutation.

Then I got my results back.  I am Positive for this gene mutation.  I'm Angelina Jolie.  She has the same mutation.

There's also a 50/50 that my beautiful babies have this mutation too.

My ultrasound revealed a cyst on one of my ovaries.  This is normal for someone my age but with this cancer fear, it caused a lot of concern for me.  I visited with an Oncologist because I wasn't sure what I should do as I'm not sick.  She did blood work and it came back with an elevated result for CA125, which basically means there is something going on somewhere in your body.   A lot of things can cause an elevated CA125, including a cyst, but cancer also causes an elevation.  There are also cancerous tumors that don't cause any elevation of the CA125.

My oncologist was worried that this cyst was actually cancer.  Ovarian cancer is terrifying because there's no way to really see anything until it is in a later stage.  It is a TERRIFYING possibility.  Of course I was in a panic because I have this cyst which might be something, and I have an elevated CA125.  There's no way to know without surgery.

I have also recently watched an acquaintance / firefighters wife go through Ovarian Cancer at Stage 4 for a year and lose the battle.  I.  WAS.  SCARED.

AND I was still trying to be there for my sister.
AND I was still trying to finish school.

SO.  My instructors and my cooperating teachers helped me get all my ducks in a row to graduate.  I am so disappointed that I didn't get to enjoy this part of my journey because of this health fear.  A saving grace were the kids, though.  I KNOW I made the right decision to go back to school.  Working with kids over the past year, and especially the last few months, were one of the reasons I bounded out of bed each morning.  It has been a blessing in light of this fear.

And it's a fear.  I got that positive result and literally felt like I was going to die.  Tomorrow.  Unreasonable, yes.  But until you are confronted with "you are going to get cancer.  We just can't tell you when or where" you won't understand this fear.  I have never had a health concern to fear in my life.  I felt confident when I had each Cesarean delivery of my girls.  I have never felt this kind of fear for my own person.

Fast forward to June.  I went to visit a Gynecological Oncologist and he recommended the removal of my ovaries.  Chances for cancer because of my BRCA1 results are higher, and I already had a cyst.  My younger sister had had benign cysts a few times before it lead to cancer.  I felt like the same thing was happening to me.

Because my ovaries needed to come out, we opted to take out my uterus too.  I don't need it anymore.

I had the procedure done robotically and only stayed one night in the hospital.

Does this eliminate fear for me?  Yes and No.  Chances are really really slim for ovarian cancer now (there's always a couple of cells left behind, etc), but now I have to watch other things, like Osteoporosis, Heart health, and surgical menopause.  Did I want to do ANY of that?  NO.  NO.  But overriding everything was the focus on doing what I had to do to be a Mom to my girls, and this was the decision we felt was best in order to prolong my life and also avoid cancer.

Removing my ovaries also reduces the likelihood for breast cancer too.

Will I have to do like Angelina and have a double mastectomy?  Probably.  Maybe.  But not right now, I hope.  Maybe next summer.  Or the summer after that.  I don't know.  I am still overwhelmed with what I have just done to myself.  What if I was one of the 20% that was never going to get cancer?  You just don't know, and there's nobody that can give you that answer.  I have children to take care of.  I can't risk it for that hope.  We felt like we did what we needed to do.

The great thing is that the cyst was just a cyst.  NO cancer.  Just a cyst.  That's wonderful news!

I have an appointment this week as a follow-up to surgery where we'll get the official pathology report. I hope it still says the same thing.  Then I'll probably get another blood draw for my CA125 to see if the levels changed, and then transition to an Oncologist who specializes in Breast Cancer.  I will also be doing a breast MRI.

I had a mammogram a few months ago but have dense breast tissue, which basically means they can't see anything!  They don't tell you that though.  An MRI will be able to see what we need to see.

I have no breasts to speak of but still don't want to get a mastectomy.  Especially right now.  I need to be applying for school jobs!  I don't want to do any of this health stuff.  It's all so overwhelming.

So.  Let's all hope that everything is fine for now and I'm okay to just monitor for a while until I sort out what to do.

My sister has been handling chemo like a rock star.  Please send positive thoughts that she continues to do so.  She is on her second type of medication and has to take it weekly until September.  Then she's going to go on a Cruise.  She deserves this cruise, so even though their savings account has taken a hit with doctor bills, she needs to commit to going!  She's been thinking of canceling but I really hope she decides to go.

She probably also saved my life.  I would never have just gone out and had genetic testing done.  My hope is that what I have proactively done has prolonged my life.  (re: Insurance - I just piggy-backed on her results, and it was $90 out of pocket with my insurance).

I know there are a lot of people in the world with stuff going on, and health concerns of their own.  But until recently, I was lucky in that I have a safe home and a happy family, and we never get sick.  This was a huge reality check.

For a while I haven't wanted to do anything.  I worked on school because I had to work on school, I was paying a lot of money for school.  And I focused on my family.  But unless it was a mindless game of Candy Crush, I haven't wanted to touch a book, and I love to read, or handle a paper trimmer.

I have been working really hard to reclaim myself in recent weeks, because I want to be a Mom to my girls and lead a good life.  And I adore memory keeping and papercrafting.  I still work for Gossamer Blue.  Lori is amazing and has been really supportive.  I still have something to offer this industry, and I really love creating.  I have also started reading and doing all those things again too.  I've even taken on some new hobbies.  I've been doing more DIY projects for my home and my girls and for crafts sake too, which has been fun.  AND I've graduated and am on the job hunt too!  I don't want this fear to get in the way of my opportunities.  I am going to make this dream come true for me.

There's a part of me that worries I'm just pushing my fears away and not dealing with them, but I'm also aware that I'm still healing from surgery and need to take one step at a time.  I am dealing with it.  I will.  But it needs to be a little less panicked and a little more focused.  So I'm working on it.  But things have changed in simple ways too.  We have adjusted our diet at home.  We raise our own beef and get pork from a neighbor, and have a garden.  But we are working to be more organic.  I can't help but think that the hormone's in our food are even more poisonous for my family, so I want to keep them out of my kids.  We already live a healthy lifestyle, but are working on making that more of a priority too.  Endorphins are good for you!  So is Kale.  :)

I want to be here for my girls, and I want science to stop focusing on patents and the money and start working on what they are capable of doing.  My girls are counting on it.

I'm also working on that beautiful life.  I will have it!  I already have it.




  1. Davinie, my prayers go out to you and your sister. Your post brought tears to my eyes, you are very strong and brave, so is your sister. Thank you for sharing your journey. Good luck with pursuing your dream, it will come true!

  2. Anonymous6:11 PM

    Oh my gosh, girl. I went through a similar scare last year and it changed me forever. Life IS beautiful and don't forget it. My prayers are with you and your sister tonight.

  3. You know this, but I love you. I can't tell you enough that I am praying for you. And I love you. And I'm PROUD of you. Honored to be able to call you my friend. xoxo

  4. Prayers for you and your sister, Much love, also. Stay strong!

  5. you are such a brave woman, you can be proud of you and your strength. I am praying for you and your sister.

  6. Anonymous5:21 AM

    I have checked your blog so many times the past few months as I have gotten so much inspiration from you ever since finding you on Studio Calico in 2009 (I do Project 12 every year, too). Your absence worried me, but I never would have suspected the mental, emotional and physical pain you have had to endure since learning of your sister's breast cancer. Davinie, know that I (and I know hundreds more of your followers) will be praying for you and your family that He will watch over you, heal you and protect you. God bless you and keep you.

  7. that's why you've been away... I commented on your last post that hoped everything was ok... and for now, it is.
    Don't feel incomplete, because you're a complete woman: woman, mother and wife.
    You've decided for the future - correctly in my opinion - and now, so things don't become so overwhelming, you must live the present.
    I also have 2 little girls ans a super husband... and a younger sister that has to control her breast every 3 months, so I understand you quite well

    Keep up the spirit!!! All the best for you and your sister.
    Kisses from Portugal,

  8. Hello! Do not worry, you'll be fine ... I know))) I also have breast cancer, will soon be 5 years of my treatment and I'll be free, really looking forward to this moment. Get well! God is with you and the family!

  9. Sending lots of hugs! Also sending prayers for your sister. I am glad you decided to go through with the procedure - the odds were too high. Just stay positive!

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  11. oh my - thanks for sharing all this info. My prayers go out to your sister, you, and your family. I admire your courage and your strength.

  12. Delivering plenty of hugs! Also sending wishes for your sis. I am grateful you made the decision to go through with the process - the possibilities were too great. Just remain positive!
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  13. Please hang in there! Sending you and your sister prayers!

  14. Oh, Dav, you've been dealing with so much! It sounds like you made the right decision, but how scary. I'll keep your sister and you in my thoughts and prayers--hoping she goes into remission very soon.

  15. I am so proud of you for getting this post out there. I know you were having a hard time figuring out what to say. Looking forward to seeing new scrappiness here...

    Alyca (Davinie's BRCA1 sister, who is embracing baldness and fake boobs and finding all the silver linings cancer has to offer. Like getting closer to my siblings and rekindling relationships. And saving money on shampoo.)

  16. Oh wow. Even as a Gynaecologist myself and watching people go through this sort of thing, I can't even begin to imagine what it's actually like to be living it as a reality. My thoughts go out to you and your family. It takes a great deal of courage to get through and I commend you for your honesty and strength. Hoping for a speedy recovery for your operation, and praying for wisdom to know how to tackle the next step.
    Best Wishes

  17. Very fantastic and well-written post.It,s extremely good and very helpful for me.Thanks for sharing this great post with us.

  18. Jen Thompson1:14 AM

    oh Davinie... There are no words to express how sorry I am that you are dealing with this. I am one of those people who CONSTANTLY worry about their health (because I am a single parent and I need to be here for my baby) and so I know how you feel worrying about your health. I know you have made the right decisions for you and your family. You gotta do what's best for you, ok? Thank you so much for sharing with us, I know it must have been so hard... Stay strong :)

  19. Sending prayers for you and your sister! I had no idea you were going through all of that. Must have been so scary to learn that you had the gene and the cyst, and seeing your sister go through it at the same time. Really puts things into perspective. Thinking of you. xo

  20. I came here to congratulate you on AC DT and I had no idea this was going on. Congratulations and hugs. So sorry all this is happening to you and your sister. Thinking of you.

  21. Hugs to you Davine! You are very brave and so is your sister. x

  22. Very fantastic and well-written post.It,s extremely good and very helpful for me.