Wednesday, December 28, 2011


I had a feeling that the results from my ultrasound experience was too good to be true.  I left the hospital on Monday after it thinking that the lumps found on MRI went away; that they were maybe a small cyst that dissolved or something cycle related.  Wrong.

Dr. Colette called today and explained to me that they likely didn't disappear.  Instead, they are just too small to be picked up by ultrasound and in an area that ultrasound isn't as reliable for anyway.  My options now are to do MRI guided biopsy or just wait until surgery time (or move up the surgery date.)

MRI guided biopsy, based solely on what I've googled, doesn't sound particularly enjoyable.  I'll take you with me on my google tour for the night.  According to, "Most women report little or no pain."  It sounds like a typical breast MRI but a device will be used to "gently compress between two compression plates."  I'd like to see if these same (probably male) authors called mammography gentle compression.  "One [compression plate] is marked with a grid structure.  Using computer software, the radiologist measures the position of the lesion with respect to the grid and calculates the position and depth of the needle placement."  They go on to discuss how the area will be numbed and a core needle will remove a small amount of the tissue 3-6 times.  I have three areas of concern, so rinse and repeat for more like 9-18 times.  This could be 2-3 hours of hanging out in superman position on the MRI table.  But we'd know exactly what these abnormal areas are and what we need to do (if anything) about them. 

Waiting until surgery, however, means that we go into it not knowing what will be in there and potentially what we could be up against.  It could be nothing--just a false positive.  It could be just the start of irregular cell growth like atypical ductal or lobular hyperplasia.  Those are the easy things.  I'm not even going to write the other things that are flashing through my mind that it could be or what they could end up being after 2 months of waiting. 

If we wait until surgery and the intraoperative (while I'm knocked out) pathology report comes back bad, we have to be "intellectually honest" as Dr. Colette likes to say about all of our decisions to save skin, nipples, and/or reconstruction methods.  She'll make the best decision she can for me because I'm going to be knocked out on the operating table at this point and won't be able to voice my opinions.  I could wake up with a completely different result that I what I closed my eyes expecting. 

The intraoperative initial pathology could come back good, but they will still do more detailed examination of all of the tissue that will take a week to process.  This means that surgery would use all the methods that I carefully agonized to make a decision over, and I would wake up without any surprises.  But a week later if that final pathology report comes back with a bad finding, we would need to do modifications.  Now we couldn't go back into surgery and remove the skin at this point, but this would mean that my nipples would need to be removed.  The only positive either way, is that I'll be free from almost all tissue that further cancer could grow already at that point. 

I asked Dr. Colette what she wants me to do.  I told her that I don't know what my abnormal results looked like in comparison to those with cancer or those with normal healthy tissue.  I trust her opinion, and even though she told me the choice is mine, I need her to give me guidance on this.  She said that she has her thoughts, but wants to consult with a colleague first to get an outsider's perspective.  We'll meet again next week to decide. 

I guess I better start working on that before surgery to-do list because I know that if we take the wait and see method, that I'm going to want to move up my surgery date a few weeks!

Monday, December 26, 2011

What a week

It has been quite a week!  It's been fantastic to spend these last few days celebrating the holidays with family, but we've also had a lot on our minds. 

It started out a week ago with my MRI (see the previous post called "I'm a puker.")  They were unsure of whether the pictures would turn out because of my uncontrollable movement while I got sick.  They called the next morning to say, "The images were all readable."  My response, "Good, so they all looked OK?'  "Your doctor will go over the results with you, we're just calling to let you know they turned out and don't need to be retaken." Hmmmm....

Later that same day I received a message saying that I needed to call my doctor back to talk about the results.  This is typical.  However, we we unable to catch each other all day over multiple tries and each time the receptionist didn't give anything away.  That was my first clue that something was really up.  Monica is usually the one to say, "Dr. Collette looked over the results and said your films looked BEAUTIFUL!"

Then we received a call from Dr. Colette in the evening.  I wasn't home but she talked to Mitch.  She said she'd try back later.  A doctor calling you at home after 5:00 from their personal phone line; that was clue #2.

When we finally connected on the phone, Dr. Colette told me that there were 3 suspicious areas found on the MRI.  This was what I'd been dreading for the last five years. 

I had two options as she saw it.  One was to just wait until surgery and see what it's like when we get in there.  That would mean that I could go in thinking I'd have one type of surgery and wake up with a very different result if when in there they found it to be cancerous.  My second option was to go for a secondary ultrasound and biopsy of the areas.  This would me possible pain and scars now, but we'd go into the surgery knowing exactly what we were dealing with.  She was also very clear that whatever the biopsy found could completely change our plans, meaning they could be gone before the end of the year in the worst case scenario. 

I figured that I have been aggressive in everything I've done so far along this journey, why stop now.  I immediately said that we needed to do the biopsy.  It was originally scheduled for the 29th.  But after trying to sleep just one night with this fear and anxiety, spending hours trying to find the spots myself without success, consulting dr. google, and my mind racing through all of the possible ways my life was suddenly going to change, I realized I could not possibly wait a week. 

I called the hospital in the morning and talked to someone in the radiology department.  I asked a ton of questions and then ended with, "I don't know if you can tell from the thousands of questions I just asked, but I'm really nervous about this.  If you have any openings earlier, I'd gladly take one...even a cancellation or something...I can be there in like 10 minutes."

That wonderful women found an opening for me today.  At 10:30 this morning, Mitch and I went in.  I knew they'd do an ultrasound first, then they'd use the ultrasound machine to guide the biopsy because none of the areas can be felt.  They dimmed the lights and began.  After 45 minutes of searching and taking plenty of ultrasound pictures, the technician said she was going to get the radiologist for a better look.  He then spent another fifteen minutes taking more images.  Their conclusion: there was nothing that they could find to be biopsied.

YESSSSS!!!!!  I'm healthy!!!!  All those prayers we were saying worked! Best Christmas present ever!

My doctor still needs to take a look at the ultrasound pictures and to see if she agrees with their determination.  The radiologist did warn me that based on the locations of the questionable areas, ultrasound has its limitations and that if Dr. Colette is still concerned she has other options before surgery.  I'm anxiously waiting to hear what she has to say, but I feel pretty confident in saying it was all just a scare.

In all honesty, I'm surprised that it took me this long to have a scare like this.  I did have one other problem with an exam, but that was when I was 21.  It's a very different type of worry when you're young and carefree. Now having children to be here for, it brings that worry to a whole new level.  I was sick to my stomach all week long, couldn't eat, had trouble sleeping. There's no way I am doing this again.  It's just a scare, but it completely confirms to me that I am making the right decision.  I cannot do this every six months after every mammogram or MRI.  In every book I've read, every BRCA positive woman has a big scare like this that puts them over the edge toward choosing risk reducing surgeries.  Mine just waited until had already scheduled it and my surgery was just 2 months away.  I guess I can check freak out off my list of things to do before surgery now. :)

Saturday, December 24, 2011

Merry Christmas!

I received a great card this week with a poem I had to share:

Tis the busiest time of the year,
tree chopping, gift shopping, kids loliipopping
and memories of friends far and near.
Tis the busiest time of the year,
still baking, gift wrapping, and
the red kettle bell to ring.
Take time to remember the most important thing, 
the laughter and joy our children bring.

Merry Christmas!

Thursday, December 22, 2011

My mantra

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all…

~Emily Dickinson

Tuesday, December 20, 2011

I am a puker

I am a puker.  If there is the slightest chance that something has a side effect of puking, it's going to happen for me.  I vomited for almost my entire first airplane flight back in fifth grade.  In labor, when I started puking, the nurses said it was a good sign (I think they said that to anything at that point).  My latest experience was during my MRI today.  This MRI was just to get one more surveillance round in before the surgery.  It was a way to ease my anxiety so that I'd feel pretty certain that we know how the post-op pathology report will turn out.
I've had them before and never had a problem.  Today was very different.  I went through the usual procedure of scrubs and metal detector.  They place the iv to be use for the contrasting dye and pushed me in my superman-ish position into the machine.  I cranked the music up and the first half went just fine. 

The technician came on my headphones to say that she was injecting the dye.  I immediately felt like I'd peed my pants (I really didn't thankfully).  I then got this intense metallic taste in my mouth and proceeded to dry heave uncontrollably for what felt like forever, but was probably just 30 seconds. I said between pukes "I'm (blaaaagh) getting (blaaaagh) sick (blaaagh) in here."  The technician came on and said "Are you OK? Do you want to be pushed out?"  But almost as quickly as it hit me, the feelings went away and I was back to normal.  I knew that we'd have to do the whole thing over if we stopped, so I said I think I'm fine.  I just had to stay in there for rest of the 8 minute series with my spit and drool over my chin.  Before the next two really short series, I had some time to clean myself up a bit and reposition my face on the head pad to avoid spots where I thought I had messed up. 

After the scan was over, the technicians helped me out and checked me over for other signs of reaction to the dye.  No hives or dizziness, I was just fine.  I told them that a friend warned me that she reacted like this to her first one, but since my previous ones were fine, I didn't think it'd be a problem.  They said that they switch types of dye since my last one, so maybe that's the culprit. 

Now I'm just waiting to hear back for the doctor to find out if the pictures from my puking incident turned out.  If my movement ruined the shots, I'll have to go back later this week to retake these.  At least I know what to expect the second time.

Ironically, while I was in the middle of this, Aila was at home pretending that her stuffed bunny Rosebud had "the pukes." She put blankets for her on the floor and needed a puke bucket for which she used the back of her toy dump truck.  It makes me feel better to know that Rosebud and I were suffering together. 

Sunday, December 18, 2011

Why did I choose to share?

Why would you choose to share this information with everyone? Do you really want everyone knowing this stuff about you?

I chose to share this information with everyone for a number of reasons:

Because I was tired of trying to figure out who I told and who I hadn't.  I like not having to start conversations with "Did I tell you about . . .?"

Because a friend mentioned that she wishes Caring Bridge was more interactive so that people could comment on the journal entries rather than doing so through guest book or personal emails.  This blog will provide that opportunity; feel free to comment away!

Because maybe seeing how hard I am trying to prevent cancer will make one person think twice about their own decisions.  If I can help one person put down their cigarette or finally make the call to schedule their annual exam they've been putting off, I will have been successful. 

Because I was so naive about the genentic testing when I first had it done.  I had no idea what to expect or what it would be like.  Maybe I can help someone else with this down the road.

Because I volunteer for the organization Bright Pink as a "Pink Pal" talking to other women around the country at varying points in their own journey, answering their questions about BRCA testing and sharing my story.  If I can talk to complete strangers about this, why can't I talk to the people I know and care about?

Because having a few more people praying for you can never hurt. 

Because at one point I looked at being BRCA positive as though I were were a ticking time bomb.  I once went on a hormonal pregnant women rant on a doctor for actually calling me that.  It's ok for me to feel it, but it is not OK for you to assume that I feel that way.  But now I realize it's been a blessing. I’ve been empowered as an advocate for my own health. I get the opportunity to work with experts. Knowledge is power. I have the power to change things in my life so that even if cancer grows in me, it will never be as devastating as it was for so many other people in my family.  

Because I can no longer back out now that everyone knows. :)

Just a quick clarification

Since posting this link on facebook, I have been overwhelmed by all of the support.  I'm thankful that all of you out there are thinking and praying for me.  I guess I should have warned my mom that I was posting it on facebook, so that she wouldn't be so surprised that she got some calls from people worried about me.  So... I must emphasis this: I do not have breast cancer. I had a genetic test done 6 years ago confirming that I have almost a 90% chance of developing cancer that will most likely occur in the next 10-15 years.  Because of this risk, I have decided to remove my breasts and rebuild them with a safer alternative.

I also forgot to mention on facebook, please don't say anything to Grandma yet!  I figured I would tell her myself when we stop over next week.  We all know she doesn't necessarily trust medical research (Grandpa who had multiple heart attacks did not have heart disease in her eyes), so if she mentions any scepticism afterward feel free to jump in.  Just make sure it's after I tell her. Thanks!

Tuesday, December 13, 2011

All the Choices

I am someone who needs to study the menus of restaurants online before going out to dinner because I cannot make a decision in the few minutes the waiters give you.   I am the most indecisive person about my order still flip flopping my choices right up until the last minute--unless barbecue sauce is involved. 

This sort of personality doesn't bode well for someone who is BRCA positive.  When I originally decided to participate in this study, I had no idea of the amount of life-changing decisions that I would have to make.  All of these decision are things that I have pondered, researched, obsessed over for the last few years. 

First of all, I had to decide whether to get the genetic testing done or not.  As I said in some previous History posts, I love free things, so this was a quick decision to me.  The next biggest decision was the move from surveillance to risk reducing surgery.  For my thoughts about this, check out the previous posts called the Road to this Decision.  Now having actually made that decision, you'd think things get easier.  Nope.  Not at all.  Here is a quick run down of all the options that I've had to figure out in the last few months:

1.  Skin sparing--Because I am choosing to do this surgery before I have cancer, I have the option of saving my skin.  Many breast cancer patients have to go through radical mastectomies removing all breast tissue and skin.  This leaves significant scarring and making the reconstruction process much trickier.  I can use my own skin; however, it comes with a risk.  They cannot remove 100% of the breast tissue with this method and there is still a very small chance that cancer could in the skin that remains. 

2.  Nipple sparing--Just like saving skin, I have the option of saving my nipples.  They would be removed during surgery, scraped clean of as much breast tissue as possible, then tested during the operation to see if there is any sign of cancer growth.  If the pathology comes back clean, they can be grafted back onto the skin.  This has a similar risk to saving skin because of the small amount of tissue that will still remain.  It also comes with the loss of all feeling, function, and change in shape.  There are alternatives if you chose not to spare nipples such as nipple reconstruction by a plastic surgeon grafting skin from another area to shape a new one or 3-D tattooing to create the look of one. 

3. Sentinel Node Biopsy--During surgery, all the breast tissue will be examined to check for any signs of cancer growth.  One additional way to check for cancer growth is through sentinel node biopsy. Several hours before surgery a radioactive tracer is injected into the breast. The surgeon can follow this to the sentinel node(s).  These 1-3 nodes will be biopsied (removed) to test of cancerous cells.  Some surgeons like to do this for BRCA patients because once the breast tissue is removed, there would be no way to ever find just the sentinel nodes again.  If cancerous cells were found either during the first surgery or later down the road, a more invasive surgery called axillary dissection would have to be performed.  There is a small risk (7%) of developing lymphodema, a permanent condition in which your lymphatic system doesn't drain correctly after the biopsy.  This risk is far greater with auxiliary dissection (30%).  As someone with no cancer right now, do I take the 7% risk now to save myself a 23% risk later?  Isn't everything I'm doing through this surgery making sure that I will never be part of the people who have the 30% risk?  If only there was some bigger perk to this biopsy, like maybe a permanent stop to underarm hair growth where the lymph nodes were removed.  Then I'd be all over this one.

4.  Reconstruction method with tissue transfer--If you choose to reconstruct your breasts, you pretty much have two options: implants or tissue transfer.  But within each of these there are numerous choices as well.

My original thought was to go for tissue transfer. Skilled surgeons can take fatty tissue from a donor site and reattach it to create breast mounds.  The possibilities include using fat from the abdominal area for a TRAM flap or DIEP.  Most surgeons around here are able to do a TRAM which is the simpler of the two.  With this surgery, they take a your belly fat along with 1 set of you "six pack" abdominal muscles. It would be basically like getting a tummy tuck while getting new breasts...sign me up.  The drawbacks however are that you are loosing your part of your abdominal muscles for the rest of your life, something I'm not sure if I could deal with.

The DIEP surgery is a newer version of the TRAM surgery where they use your belly fat still, but leave your muscle untouched.  They are able to leave the muscle behind because they perform microsurgery connecting the small veins and arteries to provide the blood supply to this tissue rather than relying on the muscle for the blood supply as with the TRAM.  The drawbacks to this surgery are that you are not only having breast surgery, but major abdominal surgery as well increasing pain, recovery time, and risks.  It is also questionable whether one would be able to carry a baby to full term after this sort of an abdominal surgery.  I don't totally understand this risk, what's really going to happen?  Is the baby just going to fall out of my abdomen?  I am 95% positive we are done having children, but still I am not ready to totally close that door yet.  It's enough that I've just made this decision to have the surgery, don't ask me to make another big one.

There are other tissue transfer options such as the gluteal flap, hip flap, or lat flap (using back fat and muscle).  Good luck finding a surgeon in small town Wisconsin to do any of these reconstruction options.  I'd have to travel to Milwaukee or Madison for any of these or the DIEP method or could even travel to New York or New Orleans for the top surgeons and breast reconstruction centers in the country.  These centers really do cater to women traveling long distances for their surgeries providing all of the normal pre-op care over the phone or skype.  Doing this sort of traveling would mean being away from my family and their support during the surgeries.  It astronomically increase the cost because of insurance coverage issues and travel expenses.  The plastic surgeons that I met with around here said that I wouldn't have enough fat for these transfers anyway.  I think they were just trying to flatter me. 

5.  Reconstruction method with implants--If tissue transfer is out, than implant is your next option.  To rebuild the breasts, plastic surgeons will insert an implant behind the chest muscle.  This makes it so that there is a biological barrier between the implant and the small amount of skin and left over tissue that could possibly grow cancerous cells.  This is normally done with the use of an expander.  During the original surgery they put in a small saline implant behind the muscle.  Every week and a half, the plastic surgeon will fill the implant with addition saline to slowly stretch and expand the area behind the muscle and build more of a normal looking breast.  Eventually this expander will be filled completely (usually a little overfilled) and a second surgery will be done to replace the expander with a permanent implant. 

Another newer idea, is to do this all in one step rather than through the use of expansion.  The plastic surgeon will cut the chest muscle and insert the full size implant right away during the same surgery in which the breast tissue is removed.  They will use alloderm, which is a tissue sample from a cadaver with all of the cells removed, to patch the area where the muscle was cut and needs extra support. There are higher risks for infection with this method and it really will not be a truly one step procedure.  This original surgery will be followed up by a revision surgery after things settle a bit to perfect the final result. 

Now with either method, you also need to decide on type of implant: saline or silicone.  The saline option is widely regarded as safer, but doesn't feel or look as natural.  The silicone options now come in a cohesive gel form that doesn't have the leaking problems that it had in the past.  The cohesive gel is kind of like a gummy bear consistency.  If they leak or rupture, they hold their shape, but is still controversial as they haven't been studied over longer time periods.  With either, they likely will not last your whole lifetime and will need to be replaced at some point.  There is also a risk known as capsular contraction, where your body rejects the implant squeezing it out of shape or in which scar tissue deforms the implant. 

There are just so many decisions.  All of these listed, plus little things like deciding where, when, with who the surgery will take place.  As soon as you make one, three more pop up.

Monday, December 12, 2011

Another popular question...

Another popular question lately has been: So how big are they going to be when you're done with surgery?

I must warn you, that I've found that some women I've met going through similar surgeries like this are very offended by this question.  I am not one of them. I see their point though. They feel that people are trivializing their surgery equating it more to breast augmentation rather than because of real cancer risks.  However, it's an honest question, something that I spent a good deal of time talking to my surgeons about. 

Unfortunately, I do not have a solid answer.  I am lucky in that my surgeon believes he will be able to do my reconstruction with one step, rather than through the use of expanders.  I also am able to keep and use my own skin, unlike women who have had radical mastectomies due to cancer.  He will have to use the skin that I have remaining and will choose an implant size to fill up this space.  Unlike typical breast augmentation, I'm having my entire breast rebuilt. So whatever cc size would be used to create a typical cup size will not be accurate comparison for what I will need.  He even said that depending upon how my chest cavity looks during surgery, I may need different amounts on each side as our rib cages typically aren't completely symmetrical. 

So long story for a short answer:  I will not know what size, but I will know that they will be healthy! 

Wednesday, December 7, 2011

What changed for you?

Someone asked me the other day, "How did you go from being so upset about your genetic testing results to so at peace with it and openly sharing about it?  What changed for you?"  Several thoughts crossed my mind.  I considered making a joke of it saying something like  "lots of wine."  But because this was a person considering going through the genetic testing process, I knew that I had to put the joking aside and be honest.  The only thing that helped me was time.

When I first received my results, I was 24 1/2 years old.  I then put myself into a mad rush to get to my doctor and schedule these surveillance recommendations I was given.  But she told me that I couldn't yet; that we'd start at 25 years old.  At the time, this angered me to no end!  6 months difference and you won't let me get a mammogram!  I still don't necessarily agree with this, but I will admit that having the 6 months to wait helped me gain perspective. 

In that time, I started to read up.  I found a fantastic resource in the organization called Facing Our Risk of Cancer Empowered, called FORCE for short.  This organization is full of women and men with a genetic predisposition to Breast and Ovarian Cancers just like me.  They have a wealth of information about the latest research and findings.  There are also a number of great books and movies available as well, my personal favorite being "In the Family."

Most helpful to me however, is the  active, supportive online community on the FORCE message boards.  Never in my time during course work with Marian would I have thought I would become active in message boards, but was I ever wrong!  On these message boards, I was able to read about women at varying stages in the process.  There were others just like me who were struggling to deal with their test results.  There were some looking for support leading up to their risk reducing surgeries or somewhere in between still in the decision process. 

For a long time, I just read these boards.  I was what you'd call a lurker.  I read the posts and other's responses, but never chimed in with my thoughts.  Over time, I became brave enough to post and now I am a regular lending my perspective, opinions, and support whenever possible.  I wonder if any of my aunts or cousins are also members?  Maybe we've chatted on there and we don't even know it :)  It even prompted me to join another message board full of women who all had babies around the same time that I had my first.  I've met some great friends through this process!

It took a long time for me to just be able to talk about my test results.  At first, just my parents knew.  I think somewhere along the lines, they told my brothers because I don't remember having to tell them.  Then I let a few friends in on it, but I felt like I had to hide it still at work because I didn't want Human Resources to find out what a drain I'd be on our insurance.  I found though that the more I talked about it, the more confident I felt about it and the decisions that I was making. 

Time also allowed me to better understand the options.  At first, you are so overwhelmed by all the numbers and terms.  They sound so huge and scary (and they really are!)  But after having been through all of the surveillance recommendations one time, I felt much more at ease with the fact that I would be doing this for the rest of my life. 

Sometimes, time is all you need.  In fact, that's what I'd like most for Christmas.  Just time.  Time to go on a date with Mitch.  Time to play dress up with my kids.  Time to do my favorite things with out thinking about the laundry or my bag full of school work stacking up.  Which is what I'm off to do right now.

Thanks for reading! 

Monday, December 5, 2011

The countdown begins

We have a date!  I got a call from my doctor tonight giving me all of the details.  I just sent in my request for medical leave.  It is official.  I can now start counting down the days. 

February 27, 2012 

Saturday, December 3, 2011


This is a great animated clip that demonstrates the genetic mutation process from the film In the Family.

Tuesday, November 29, 2011

Lifestyle Changes

So what are the lifestyle changes I should be doing?  Are they applicable for everyone, not just those that are BRCA positive? 

When meeting with Dr. Collette for the first time, she outlined a number of different lifestyle changes that I should make to reduce my risks of developing cancer.  They are great recommendations for absolutely anyone! 
  1. Weight/BMI: Breast cancer is known as one of the "fat cancers."  Not meaning that it only happens to over weight people, but rather because estrogen is stored in fat cells. Thus the more fat you have on your body, the more estrogen stores you have.  Most often, breast cancers are due to high amounts of estrogen in your body.  It is recommended to keep your BMI below 25, preferrably 20 or lower.  Challenging, yes!  Doable, yes!
  2. Physical Activity: An obvious way to get or keep you BMI down is to get physical activity. However, exercise also is important because it gets your heart pumping.  You blood is then getting more oxygen and moving this oxygen quicker to all the parts of your body.  Your cells need this healthy oxygen to grow, divide, multiply as they should.  We want healthy cell growth! Unhealthy cell growth leads to cancer. Aim for at least 150 minutes of exercise per week.  You could even push yourself to do more like 200 minutes for even more added benefits.  For more info on this or to possibly participate in a great study, visit the wiser sister study.
  3. Alcohol: I was told to never drink more than 2 drinks in a 24 hour period.  Other things I have read said no more than one per day.  Regardless, the more alcohol you drink, the greater your risk of developing cancer.  It has to do with the way your liver handles the alcohol.  When you drink, your liver has to work very hard. Binge drinking in particular overworks your liver.  I'm not just talking about college party binge drinking.  The occasional wedding, work Christmas party, or Packer game where you drink too much is also considered binge drinking.  Your liver is so busy handling the alcohol that it cannot take on the normal processes leaving additional estrogen in our bodies.
  4. Fiber: The more fiber you eat, the faster your food will leave your body.  This means that the processed foods with higher levels of toxins get out of our bodies faster.  The estrogen has less chance to stay in your body.  Colon cancers have also been connected to the BRCA mutations, so keep that colon working.  I eat a minimum of 20 grams of fiber each day.  I should have bought stock in the Fiber One brand. 
  5. Vitamin D: Most people living north of Atlanta, Georgia are deficient in Vitamin D.  Getting a good dose of Vitamin D3 can reduce you risks by 50%.  It's a small pill and easy to swallow.
  6. Omega 3s: Healthy fatty acids like fish oil and flax seed oil are currently being researched.  Initial studies have been showing promising results.  It is thought that these oils act as anti-estrogen.  Even if it doesn't end up providing any breast cancer prevention, it's good for you for so many other reasons like cholesterol, heart health, and mood.  For more information about current clinical trials check out the University of Kansas Cancer Prevention Center
  7. Sleep: Getting less than 6 hours of sleep a night can increase your risks 60%.  Much of the repair of the everyday wear and tear of living happens during the night. Sleep deprivation can cause low grade inflammation, which is linked to almost all types of cancer and heart disease. Here's my excuse for being in by by 9:00 every night.
  8. Put as little extra estrogen in your body as possible: If our hereditary breast cancer is estrogen receptive, then I need to make sure I put as little estrogen in my body as possible.  Our bodies naturally produce it, so I can't completely eliminate it (yet).  Instead, I just need to make healthy choices when it comes to contraception and other medications to make sure I am not putting any additional estrogen into my body. 
After all of these factors, it's still important to know that we cannot completely prevent cancer.  We can simply reduce our risks.  Cancer grows because of multiple reasons.  Even if I do develop cancer, I have to be careful to not blame myself for something that I have done in the past.  

Feeling Great

As of today, I am still waiting anxiously on a phone call from my doctors with the exact scheduling of my surgery so that I can start counting down the days.  Even though I am not very good at waiting, I have noticed that I am feeling really good lately, actually I would even say fantastic. 

We were driving to my aunt's house for Thanksgiving and I looked over at Mitch and told him that I haven't felt this good in a long time.  After saying that though, I'm not sure how true it was.  I think that I really have felt good for awhile now, I just haven't stopped to recognize it. As we continued the drive and throughout the rest of the weekend, I tried to figure out what I could attribute this great feeling to.  Here's the list we created:
It's because...
  • I had a great 5 days off of work.
  • I had some great moments with the girls during this time off.
  • Adrienne is pretty much potty trained.
  • I was on a major sugar high from the amount of cookie dough and cut out cookies I ate this weekend.
  • We finally finished one of our home improvement projects after almost three years!
  • I did plenty of retail therapy lately.
  • I had some great visits with friends
  • I'm finally taking my vitamins and fish oil regularly.
  • I accomplished my goal for the number of petition signatures
  • All this working out is giving me an emotional boost.
  • It feels good to finally share all this information with others.
  • I feel so loved and supported by you all, but especially Mitch.
Unfortunately, a good friend of mine who went through her risk reducing surgery a few weeks ago isn't feeling as well.  She's had some set backs in her recovery lately.  Please consider saying a little prayer for her healing. 

I hope I have more to post soon!

Friday, November 25, 2011

What exactly is this BRCA gene mutation?

What exactly is this BRCA gene mutation? How is it related to cancers?

All of the cells that make up your body divide and grow throughout your life. Cells are replaced that wear out or are injured.  When cells divide normally, they follow their genetic instructions on how fast to grow and when to stop.  But cancer grows when this normal process is disrupted. Instead of following orders, the cells begin to grow abnormal or out of control. It might start with just a few abnormalities.  This doesn't mean cancer.  However this abnormal cell growth left unchecked, will lead to cancer.

Everyone has these genes.  Actually, we have two copies of each gene, a BRCA1 and BRCA2 from your mother and also one of each from your father. As long as at least one gene in each set works normally, cancer won’t form in your breasts or ovaries. The two copies of each gene act as a backup for the other; if one is damaged, the other still handles repairs.  However, if either BRCA1 or BRCA2 are damaged, cancer is free to grow. This damage can come from exposure to any number of the known carcinogens a person experience in a lifetime.  This is how people born with two normal copies of each BRCA gene can develop breast or ovarian cancer. 

However in our family, some people are not born with normal BRCA genes.  I inherited an abnormal genetic change, called a "mutation," on my BRCA1 gene.  Because we have two sets of these genes, I still have the working set that I inherited from my mom; I just lack the back up protection. 

This leads to a much higher risk of developing breast and ovarian.  The general population has a 12% risk of developing breast cancer over their lifetime.  Those with a mutation on their BRCA genes, instead have an 87% lifetime risk.  The general population has a 2% risk of developing ovarian cancer, BRCA positive have 54% risk.
People with an inherited gene change have a 50% chance of passing the mutation to each of their children.  My girls have 2 sets of both of these genes; one set from me, one set from Mitch.  From me, they could have gotten the perfectly normal one that I received from my mom.  However, there is a risk that they may have gotten my mutated genes as well. 

The only way to know for sure if a person has these mutated genes, is for a genetic test to be performed.  The company Myriad has a patent on these genes and is the only place outside of medical studies that this test can be performed.  I have some strong opinions on Myriad and their patents that I will save for another post.

Could I have a BRCA mutation too?

What are some signs that we might have hereditary cancer in our family? How do I get my testing for free?  

Experts believe that about 10% of most cancer types are due to these inherited gene changes. Signs of an hereditary breast-ovarian cancer syndrome in a family include, but are not limited to any family member with:
  • Ovarian or fallopian tube cancer at any age
  • Breast cancer at age 50 or younger
  • Breast cancer in both breasts at any age
  • Both breast and ovarian cancer
  • Male breast cancer
  • Ashkenazi Jewish heritage and breast cancer before age 60
More than one relative on the same side of the family with any of these cancers:
  • Breast cancer
  • Ovarian or fallopian tube cancer
  • Prostate cancer
  • Pancreatic cancer
  • Melanoma
If the cancer in your family may be hereditary, it is important to consult with a genetics expert.  They'll be able to better assess whether you would be a good candidate for genetic testing.

I really have no idea what made Creighton take on our family as part of their study.  I have a feeling it was because of the Jadin family's size. So I honestly do not know how others could get involved outside of our particular family.  If you are interested in contacting the researchers at Creighton and you are a member of the Jadin family, let me know and I can get you the exact details.  Here's a link to their site.

Questions & Answers

Yes, I will take questions from the audience!   I will gladly try my best to answer and explain things to help others understand better.  In fact, that's a great idea for some posts now that I've gotten all my sappiness out and while I'm waiting on finding out my surgery date with no news.  I've recieved several great questions already by email and in person since sending out the links earlier this week. Over the next few days, I'll work on putting together answers to the following:

What is the BRCA mutation? How does it work?
What lifestyle changes did the doctor recommend? Are they helpful for general population as well? 
What are the surgical options that I had to decide between? 

If you have more questions, post them in the comments and I'll see what I can do.


The Road to this Decision part 2

I have some much to be thankful for: my supportive husband; my beautiful girls, our health and happiness, and all the caring family and friends surrounding us.  They are all a huge part of what made my decision to have prophylactic surgery. Here's another journal entry that helped me see what is important.  It's a very personal one.  I needed the box of tissue just rereading it. It's not neccessarily a happy holidays sort of a post, but it's been a big part of our lives for the last few months. 

July 4 2011
Wow, how quickly things can change. All of April and May, I was collecting my pee daily so that I could figure out my ovulation cycles. I printed out the Academic Calendar for the 2011-2012 school year and calculated all maternity leave options. I knew down to a t when I ovulated and even read up a bit on "how to make a boy," which was some interesting stuff.

June came around.  My cycle came, it was perfect timing. And…IT WORKED! I could tell within 3 days that I was pregnant. My boobs hurt like hell, crazy feelings going on down there, I was dizzy while working out, and I just could tell. The reality of three kids though was pretty scary! Would the car seats fit in our cars? Would the girls be able to share a room? Could we move? Will we ever be able to go on a family vacation?

I knew I was pregnant from what felt like the moment afterward, but you have to wait almost 2 weeks until it will show up on a pregnancy test. Those two weeks waiting was so hard. I was crazy about taking pregnancy tests. I remember that I was going teach in Marinette for the weekend. I was staying overnight and I thought about packing a pregnancy test for the morning, but didn’t. It would be a good was to break my ridiculous habit. It was hell sitting there alone in a hotel room feeling all of these pregnancy symptoms and wanting to know for sure but not having the test.

Immediately when I got home, I took one and within 30 seconds it was positive. I walked down stairs and showed Mitch—my classic style. Who needs to do something cute—just the shock of the positive test is enough and I can’t keep things like this in, especially from Mitch. So that moment it became real. Ready or not, we were about to have 3 children.

That didn’t last long. Less than 2 weeks later, I began to bleed. It started as just a bit of spotting, then after a workout there was a lot. I assigned myself to bed rest for the remainder of the day, which is incredibly hard when you are home with 2 kids. I woke up in the morning feeling hopeful, but after using the bathroom I knew that much blood wasn’t normal.

I called my doctor’s office. My regular ob/gyn, Dr. Megan Temp, was out on maternity leave and of course my least favorite doctor in the entire practice, the coldest, least emotional one with zero tact would be my substitute for the day. Based on what I described, he told me right then and there over the phone that the baby was probably already gone. I’d need to come in for blood tests to make sure over the next few days. I got the final results on June 30th confirming that my blood count levels were far too low. Happy 29th Birthday!

I put on a happy face for as long as I could, but alone at home I cried a good portion of the days. I knew that it would be hard emotionally; I’ve seen so many others go through the loss of a baby and the struggles they faces afterward. But I had no idea of the physical pain that goes with it. That was the worst part of it for me: the gnawing pain in your stomach all day long, the constant reminder every time you go to the bathroom that you lost it.

Then there was the guilt. Guilt because I thought it might be something that I did. Was it because we had sex the night right before the bleeding started? Was it because I pushed myself too hard in working out? I just felt so good working out those last two days. For the first time in 2 weeks I didn’t feel winded and worn out right away.

But the most guilt was because in a strange way, I felt relieved. The days after that positive test I had started to really freak out. The infant car seat expired; the seats wouldn’t fit in the car. What about our kitchen table? Where would a 3rd child sit? Was this really right for us? Everywhere I turned from the grocery store and target to the zoo and museum where mothers of 3+ looking stressed out and strung out.  One of my children nearly drowned at a friends pool party, while I was chatting at the table with friends.  A few days later while at my nephew's birthday party, we found my other daughter choking on a pretzel in the kitchen when neither Mitch or I knew she was in the kitchen or hand climbed up to reach the pretzels.  If we can't take care of these two, what on earth are we going to do with three?

Molly tried to assure me that this way just my brains way of trying to protect itself. That if I say that I don’t really want another, I won’t have to feel the pain emotionally. I’m sure she’s right, but if this isn’t how I’m going to feel forever, when will I know? I had it all planned out perfectly, why couldn’t everything just go as I had planned. Maybe it was because something was wrong. Wrong with the baby or wrong with me? Maybe it was because God was trying to tell me mastectomy first!

August 4, 2011
The weeping and bleeding did eventually stop thankfully, but the uncertainty definitely didn’t yet. I feel so torn and pressured to make a decision. If I am going to have a maternity leave timed out like I had wanted to, I need to make a decision now. If I wait too long, I’m going to be stuck with another maternity leave at the beginning of the school year which was so hard. If I wait too long, I’m just pushing back my mastectomy even farther. My goal was to have it done by the time I’m 31 because that was when my youngest aunt was diagnosed. Between 9 months of pregnancy and a year of nursing, there’s no way it’s possible to meet that goal. Plus how fair is it to choose to have a surgery that puts me out of commission for 4-6 weeks when I have a child that is only a year old. I have a hard time asking for and accepting help from others, can I really ask for other people to take care of my 3 children less than 4 for that long? Maybe I need to just make sure that I’m here and healthy for the 2 wonderful children that I have. I'm trying to be all zen about it and say whatever happens happens, but that's not true. We either have to use protection or not.

I posted about my indecision to some of the ladies on the message boards and got some great advice. One great lady said, “Having babies is the easy part. Raising good kids is tough.” Another friend said, “Just know that a family is beautiful when love is the center of it…no magic number or titles..just love.” My favorite was "you know you've had enough when you've already had too many."

Whether talking about kids or beer, I really think that last one makes sense and in a way best describes what I am feeling. People say that you’ll never regret another child once you meet it and immediately feel that love for it. But I feel like I got a second chance that no one else gets in regards to that. I thought 3 was for us, but then realized it was too many and got an easy out of it. But now I feel like a horrible mother for saying that.

People have told me that I can always have children after the mastectomy, but I think that my biggest problem is that I can't imagine having a child and not nursing. I'm such a breastfeeding advocate. It was so important to me with my girls. I nursed for 10 months, donated milk to a milkbank, and coached so many other friends and co-workers through it that if I had to change occupations, I could easily be a lactation consulant. I'm afraid that I might have a harder time bonding. I’m afraid of the financial impact. In all honesty, I’m just afraid in general. What if a miscarriage happens again? I don’t want to feel that pain again. I don’t want my heart broken again.

For now, my only decision is that I need to give myself more time for my hormones to get back to normal since the miscarriage and then maybe I'll be able to feel better about whatever choice we make.

August 2, 2011
This past weekend I was at my cousin wedding. It was a beautiful day, she was such a gorgeous bride, but I got crazy emotional. Her mom is my aunt and godmother who died. I was going through so many memories that I had with my aunt. I remember shopping with her at the Kohls in the East Town Mall. I remember going to the Farmer’s Market with her and my cousin. I remember the way she cut the hot dogs in the mac and cheese--don't you love how I remember the important stuff. :)

It made me so sad to think that cousin was just 4 when her mom died, that's just a little bit older than Aila. It was also so hard to see her in this big moment without her mom there. They did a prayer for her during the mass and there wasn't a dry in on her entire half of church. It wasn’t anything huge and didn’t need to be, because this was my cousin and her husband's day. It was a simple moment of silence for her, but that silence was very powerful. I just kept thinking how horrible I would feel if I had the power to change things but didn't do it and my kids ended up without me for these big moments.

It was a really helpful day though for Mitch and I. Seeing how much my entire family was affected helped him see why this is so important to me. He keeps saying I'm moving to fast, but I think no way...I've sat on this so long already.

September 25th
I made a pro/con list. Yes, a pro/con list about having another child. Make fun of me all you want, but I did. Rory Gilmore would have been proud. I’ll spare you from the details here (again for fear of being called a horrible parent for the things that I said as cons). I presented it to Mitch. He was accepting of all of my thoughts, but then added that in any other situation if the tables were turned and he was the one saying this is my final decision, I would try my hardest to change his mind. So he feels that it is his job, no his duty, to badger me about the decision as much as I would of him. You got me on that one, Mitch. Maybe I should have just let some of those things go in the past, oops!

Wednesday, November 23, 2011

The Road to this Decision part 1

The road to this decision has not been easy. I like to hope that making the decision was the hardest part and recovery will be a breeze in comparison. I doubt that is true, but I'm still hoping. To best explain my thought process, I'm going to take some more excerpts from my journal. The following entries span February 2011-August 2011

On Tuesday, February 8, 2011 while most of Green Bay was still reeling from the Packers Superbowl Victory and crowding the streets to welcome the players back to Lambeau, I was waiting in Bellin Hospital. I like to call this day my own little super surveillance day. I lined up all the appointments for my necessary surveillance on the same day, precisely six months after I had last nursed Adrienne to sleep one final time.

I had been quite frustrated with the fact that I had to put almost all surveillance on hold while I was pregnant and nursing. I could not find a single doctor within a 60 mile radius that would perform MRI or mammogram while pregnant or nursing--I tried. So immediately after I had finished nursing Aila, I called to schedule my MRI. They told me you need to wait until a specific point in your cycle so that it will be as accurate as possible. I was to call them back as soon as it returned. Well I waited and waited and my cycle never came. That's when we realized we were about to have another! It was a bit closer that we had originally planned. I had hoped to get one round of all tests in first, but it didn't work out that way. Adrienne came into our lives and all those things would just have to be put on hold for awhile.

After these two pregnancies almost back to back, my breast milk finally had a chance to dry up and now my breasts were ready for all the squeezing, poking, and prodding that I missed for the last few years. I was to have a clinical breast exam, MRI, and mammogram all within the same day. I couldn’t sleep the night before. A lot rested on this day. If all of the tests looked good, we’d try for another child later this year. If anything looked suspicious, my breast would be gone within the month.

The last mammogram I had prior to this was on June 8, 2007, the same day as the birth of a very special little girl. I actually remember running into visitors in the hospital elevator on their way to visit the new mom and baby while I was on my way down to my own appointment. After the actual test, I was told to wait in the small dressing room for the doctor. After a few moments, the head of radiology came in to talk to me. My heart sank when she introduced herself. I thought, “Oh shit.” But she just had to meet with me to let me know that the mammogram really didn’t detect much yet because of my age. She wanted to make sure I was aware of this before basing a ton of decisions on this test.

My mammogram went perfectly that day; as well as an uncomfortable, unnatural pose and a whole lot of squeezing can go. I walked over to the MRI center and began my wait. I had come prepared because I knew I had some time in between, I thought I’d get some correcting done in the meantime. I spent about an hour in the waiting room where I sat uncomfortable listening to an episode of Sex in the City on the tiny waiting room tv with a Grandma and her young grandchild. Back to the point...

My turn was called; I changed into the scrub gear and went back. You walk through metal detectors before entering the area. I lay down on the table; they positioned my breasts into a cone shaped device. The two technicians hands were all over pushing them, pulling them, positioning them just right. I had to lie there face down, shirt open, with my hands gripping the handle bars over my head. I was slid into the machine, cranked up the music, and heard that crazy hum. Kayla was right, when in doubt, turn the music up even louder. They tell you it’s going to be loud. But I really didn’t expect it to be that loud. I think I had a headache for another 3 days. Oh well, I got over it. Only thing I would do differently next time is wear warmer socks.

After this day, there was a short time in which my doctor was unable to confirm my original genetic test results. As troubling as it was at first, I think it helped me clarify my decision. Here's what I was thinking at this point:

March 19, 2011
They have no record of me ever taking the test. How is this? I remember drawing that blood. She did it at our kitchen table. I remember sending it in. I remember the specifics about exaclty when and how to send it so that it could be received and taken care of timed out just perfectly. I remember sitting at the kitchen table receiving my results. I remember Dr. Lynch’s annoyingly smug voice when he asked, “So what do you think? What is your prediction of the results?” You jerk You knew all along and you are going to let me go on saying how I don’t think I have it.

All of this and now they say they don’t have my results. Could it really be possible that they gave me the wrong results? All of this was for nothing? Or even if they did have my results but lost them in the midst—could it have been a false positive? What are the chances?

I’m so torn right now. I don’t want to get my hopes up, but I really do want to think on the positive side like I tried the afternoon of Dr. Lynch’s phone call. How spectacular would that be to never have to take the extreme measures, to not pass this onto my children, for my brothers to not have to be too worried to get their results, to be able to go more than 3 months without seeing my doctor! But at the same time, I’ve finally come to peace with my decision…another baby…two years later surgery…new boobs made from my own floppy tummy, not so bad of a deal. I just don’t want to feel the same thing again.

March 26, 2011
Well, don’t have to worry about that. Results were never lost. They just didn’t know exactly who to call at Creighton. Now I have multiple copies of the results. I can have them to share with whoever I’d like now. One meeting with Sumedha quickly cleared that up. I don’t know why I was avoiding that so long. It was a great appointment. She’s such a comforting personality. She asked a lot of questions about how I’m feeling about this and what sort of plans I have to make sure that I understand all of my options. Of course, I cried. I shared with her that I feel a tremendous amount of guilt for having this, for bringing this into Mitch’s life, for ruining our first years of marriage. She said that it is perfectly normal, that I need someone to lean on. She really helped me see how hard we’ve made this, just by not being open about things with in the Jadin family. If people talked, we could all understand this better. I left with a number of resources including the Little Pink Book by the organization Bright Pink, which looks pretty interesting. I like that their motto is “Not your mother’s breast cancer organization.”

Appointment went well!

My appointment went well this morning. I could tell Mitch understood why I chose them right away in the waiting room when Monica and Dr. Colette greeted us. He approves.

My exam looked clean. We talked through all of the essential details for surgery. I feel solid on all of the tough decisions I had to make about the exact type of surgery. I will be having a prophylactic bilateral simple mastectomy. I had to make choices between nipple sparing or non, reconstruction options which dictate the type of incision she will make, and decide whether to do sentinel node biopsy. I've spent the last two years reading up on all of the options, so finally vocalizing my choices to a medical professional today felt great.

I don't have an exact date yet because Dr. Colette, my breast surgeon, will be working together with my reconstructive surgeon, Dr. Janitch. They both need some time to coordinate their schedules along with booking the hospital before we'll know the specifics. We are aiming for sometime in February. Dr. Colette suggested we wait until after Valentine's Day so that we all don't have to spend that day in the hospital. :)

She asked me today before we were finished, "What made you decide that now is right the time?" I smiled, glanced at Mitch, and said "I want to do it before I turn 30." That was far too simple of an answer. The real answer takes a lot more explaining.

Tuesday, November 22, 2011


After the fog cleared from receiving my genetic testing results, I decided that I heightened surveillance was the best route for me. My doctors recommended a routine of biannual clinical breast exams, yearly mammograms, and yearly MRI. Ideally, I will stretch these out over the entire year so that I see the doctor or have a test about every 3 months. However, with between pregnancy and nursing I hadn't been able to stick to that schedule so well in the past few years.

I have an appointment tomorrow morning again. Mitch and I will drive down to Neenah to meet with Dr. Colette Salm-Schmid. It's a normal surveillance and so much more this time. When I called to schedule this one, I told Monica (yes, I am on first name basis with the receptionist), "My name is Renee Jadin-Rice and I'm calling to schedule my prophylactic bilateral mastectomy." She laughed and said saying it out loud is sometimes the hardest part.

I'm nervous right before every appointment. That’s when my anxiety is at it’s peak. Sometimes it’s just that morning when I’m getting ready or on the drive there. Other times it’s all week long. I worry that this could be my day. This could be the last time I walk in the doctor as a preventative measure. I think of how quickly would my life could change if cancer is discovered. On several occasions, I’ve had doctors touch my breasts for the first time and say “Oh…they are lumpy” so I do have justified reason for feeling concern. My appointment at the end of August was the first time that I made it all the way through without crying—big step!

But tomorrow is more. It's the first time that Mitch will be meeting Dr. Colette. I love this lady. Meeting her changed my outlook on so many things. I leave her office feeling spectacular about myself. I just hope he likes her as much as I do. We're going to be spending a lot of time with her over the next few months.

I went through quite a search to find a breast specialist that I liked. The worst one I tried wouldn't even see me and had her nurse meet with me instead. But the first time I met Dr. Colette it was so different. Just sitting in her waiting room that first time, I knew she was the one that I wanted to work with for this. My first clue was a puzzle on the coffee table. (I was once called puzzle-girl.) Second, there was a very elderly man waiting there doing the puzzle. His wife walked back into the waiting room to join him. Somebody accompanied her holding her elbow as she shuffled back to him. I could see her drains and it was obvious what she was there for. I overheard bits of the conversation as the staff member complimented him on talking great care of his wife, set them up with everything the need before the next appointment, and even had someone walk them out to their car because of those confusing hospital hallways. I tried not to stare too much, but when I realized that this was the doctor, not just a friendly nurse helping them out, I couldn't stop watching. She was so kind and caring to this couple that I knew right then and there that she'd be the one for me.

Our first appointment and all of the rest that followed have been just fantastic. She writes down everything she talks to you about on her pink pad of paper, draws diagrams and outlines, and then makes a copy of it so we both get to keep a copy of it. I will get my results for all tests from both my regular doctor and Dr. Colette. My regular doctor's office will call and say, "Your test results came back negative." Dr. Colete will call and tell me, "You MRI looked beautiful." It's a small difference in words, but huge difference in feelings.

She was the one who finally explained to me about my 3 options: lifestyle changes, chemo-preventative medicine, or risk reducing surgeries. For the last five years, I have made as many lifestyle changes as I can. I am finally ready to move onto the risk reducing surgeries. At tomorrow's appointment, we will set the date.

Monday, November 21, 2011

History Part 3

I promise there won't be too many other history ones...I will get to my up to date thoughts very soon :)

For the next few weeks after recieving my results, I tried to ignore them as much as I could and pretend like it wasn't a big deal. I was busy with writing thank yous from our wedding, dealing with family stuff, work, and planning for our honeymoon.

Another few weeks later, my cousin dies. Like this family hasn’t gone through enough already? Take someone caring, generous, hardworking, and kill him in a car accident. That was the breaking point for me--seeing our family together again for another funeral from someone who died way too young.

I just couldn’t see the light through all darkness. I felt like it would be me next. I felt like there was no way that we could have kids now because I didn’t want to ever leave them. I didn’t want them to see me sick. I didn’t want them to have to watch their mother die. I didn’t want to be the reason they exhibited behavior problems or struggled through adolescence because they didn’t have a mom or had one that was just sick all the time. As much as I tried each day to be positive, I just couldn’t get out from under the cloud. Like Pig Pen walking around with his cloud of dust, I was with my cloud of anger, grief, and constant worry.

I wished I never even had the test. I wished that I never talked about it with my doctor, who immediately started talking about the surgeries which I clearly wasn’t ready for. I didn’t want to lose my breasts now or in the future. Welcome to marriage Mitch, here’s your disfigured wife. I held it in as much as I could. We were set to go on our honeymoon in just a few weeks, I didn’t want Mitch to think that anything was wrong.

Mexico was perfect. It was the perfect escape from all of the things that I had been feeling. I didn’t think about doctors or family or anything else but the two of us. The last day there I remember Mitch snapping at me because of not moving fast enough as we were packing and I just broke down crying. I didn’t want to go back to reality. I think that’s when I knew it was something bigger.

I don’t remember the exact specifics but someone, somewhere, somehow convinced me to go to EAP, the free help our employer offers with counseling services. I talked with a counselor for six sessions. She recommended I talk to my doctor about depression and anxiety. I started on Lexipro shortly after that and I began to see the light. Dr. Chun was so caring during this visit. She told me that I need to look at this in a positive light, that I get the power of knowledge that so many other women never get. It was the start of my healing. I feel bad now leaving her practice after she helped me so much, but leaving that location was one of the best things I could do for my anxiety. I didn't need the meds for long, but it's still so important for people to know that they are there for you when you need them. At this point, it was exactly what I needed to get through this fog.

History Part 2

Back in Spring of 2006, Sumheda Ghate, a genetic counselor with Prevea, sent out an invitation to all members of our extended family to have a family meeting about our BRCA options. Because of the extreme size of our family and unique history, researchers at Creighton University’s Heriditary Cancer Institute approached the family and offered the actual test to be done free of charge as long as they can track our family and use our results to help in for future research.

The meeting had good turn out; there was representation from almost every one of the families. Sumheda presented us with information about the BRCA mutation and what the testing would be like. There were a lot of worries about insurance coverage or problems during the question and answer session—classic Jadin moments of pessimism. She tried to calm those fears by explaining that legislation had recently been passed making it illegal for insurance companies to discriminate based on genetic testing.

I left this meeting certain that I wanted to get the testing done. I thought, "It’s free, I’m sold." My dad wasn’t so certain. He was leary of the insurance problems. But thanks to my aunt having already identified the gene, I didn’t need my dad to do it.

The decision to get the testing done was a simple one for me. Of course I’d do it. I always wanted to know and someone offered to do it for free. You don’t have to ask me twice. I sent in the information as soon as I could and heard back from them right away.

I don’t remember the exacts for the dates, but shortly after that I received a kit in the mail. There were very specific directions as to how and when to draw the blood, several questionnaires to fill out, and a large biohazard bag to send it all off in. I filled out the informed consent. All over the forms were clear statements about the risks of participating in this study. I thought to myself, “I’m young, I can handle this, it won’t be a big deal.” My dad still insisted that I have no record of this in my medical file, so I had to find a nurse who could draw blood for me. We found someone who could draw blood for me at our home. She came over one week night. We sat at the kitchen table, she put the plastic thing around my arm, quick prick, and within a few minutes all the vials were filled.

I also had to designate how/if I wanted to receive my results. I designated that I’d like to have a consultation with the doctor over the phone. I think in a way, I was afraid to get the results in person with Sumedha. I knew what the results in my heart. I didn’t want to be embarrassed in front of a stranger crying over something that I knew all along. That and the fact that my dad made sure nothing would be in my medical records!

I packaged the set and sent it off. I knew that I’d have to wait up to six months before hearing my results. I didn’t think too much about it in the meantime. My mind was elsewhere…our wedding!
I remember coming home from work one day to a message on the machine saying I needed to call them back to set up an appointment to go over my results. It was getting close now.

I set up the appointment for 4:00 on a week night. It was on my mind all day long at school. I had told no one at school about it. I sat through a staff meeting knowing that I had to get moving if I wanted to make it home in time. I remember bursting through the door afraid that I’d miss the call, but then pacing the kitchen actually waiting for them as I had plenty of time. Pacing is a very Jadin trait.

I remember Dr. Lynch asking, “So what do you think? What is your prediction of the results?” Everything in me wanted to say "I know I have it." But something made me say “No.” I rambled something about trying to think positive when I knew in my heart what the correct answer was.

Then he went on with “Well, you are positive for it.”

I said “OK” and in that moment I don’t think I even heard what he continued to say. I was just trying to make it through the rest of the conversation without crying. I didn’t want to sit there blubbering. I had a good idea that I had it already, but still those tears flowed. There was no way of holding it in. I don’t remember many of the details so it's a good thing they sent a packet in the mail with their recommendations. He quickly passed the phone onto a nurse who went over the rest of the details. The one thing I remember them saying was that I have an 87% chance of developing cancer over my lifetime. Then it was, ok, thanks, have a great day, and click. The rest of the night… blur of tears.

I remember Mitch saying “I knew this was going to happen.” He was talking about how we had something planned, maybe going out to dinner or something, and I was too sad to do it that night. He didn’t say it in a mean way, he just said it like he know he’d to pick me up from rock bottom that night. And he did. He always has and always will. I’m so lucky I have him.

History Part 1

I decided that I’d like to start recording my thoughts in a journal as I go along this BRCA journey. Someday my girls might want to know how or why I came to the decisions that I have. Maybe being able to read my thoughts will help make their own decisions easier one day. As I take excerpts from my journal, I'm going to try to remove names of family members to respect their privacy. Hopefully, you can still get the point.

Unlike most women worried about family influence on breast cancer, my concerns come from my father’s side. The first doctor I saw as an adult prior to getting the genetic test results back, dismissed my concern because it wasn’t my mom who had the diagnosis. Why is this? You get 50% of your genes from Mom and 50% from Dad. So why is it assumed that you got your breast from your Mom? Well, mine came from my dad.

His family has quite the history. However, getting an accurate account of it has been an interesting task. There have plenty of family legends, personal thoughts, and speculations as to the whys and whens of our hereditary breast cancer. In fact, I grew up with the assumption, as morbid as it may sound, that it was not a matter of if I ever get cancer, but rather when I get cancer. This wasn’t in a scary or even negative way, it was just a matter of life that I grew up realizing. I saw so many people around me go through treatments some with complete success, others not. I heard the stories from aunts and uncles, so that it was just a fact of life. But when I got to an age where I actually wanted to do something about this, getting an accurate record proved more tricky.

My dad has thirteen siblings spread all over Wisconsin and Upper Michigan. All but one of these siblings had at least 1 child, several had as many as 4. Because of the family’s sheer size, the entire group has not gotten together for a holiday gathering for as long as I can remember. There were the occasional Christmas visits to Grandma and Grandpa’s where 3 or 4 families would overlap, a wedding in which a good portion of the family would be present, and of course funerals, but none of these situations are the prime time to say “Hey, by the way when was your diagnosis again?” or “Was yours Ductal or Lobular?"

The only person to this day who I believe has an accurate account it our Genetic Counselor Sumheda Ghate. When you sit down with her and see it on paper, it is pretty scary. She has this stack of papers that she stretches out and takes up almost the entire table. Each family member is listed there on a branch with small circles with plus or minus symbols, some blackened, some clear, all meaning some sort of code about our cancer history. 6 out of 13 siblings lives have been effected by breast cancer along with Grandma, Great Grandma, the list could go on and on.

One aunt's life was taken far too soon by cancer. We all wondered why her life ended so soon. Why did she develop cancer at such a young age---just 31? Why did it move so quickly? In her struggle to understand it, another aunt decided to forgo the family legends and look to actual science. She forked out the thousands of dollars to get the genetic testing completed. Maybe it was her twin connection, maybe it was her concern for her own health, or maybe it was her way to cope with the deaths of her sister and mother, who knows. Whatever motivated my aunt to get that original test done, I’m so thankful she did it.

Sunday, November 20, 2011

Here I Go

I've been toying with this idea for awhile now. . . sharing my experience through a blog. I've been keeping a journal for the last few years in one incredibly long word file. I type away once or twice a week. Most of the thoughts are about Mitch and the girls and what their latest silly things they said or did this week. Other times there are thoughts about work. However, there is also a huge portion of my life that has been devoted to my health.

Since finding out my BRCA status, I have experienced a roller coaster of emotions and I have finally come to a point where I feel comfortable sharing my experience with others. So from here out, I am going to be posting my journey from surveillance through preventative surgeries and beyond to this blog.

I am going to let you know from the start that there might be some gruesome details along the way. I have been reading books, message boards, and following a number of other BRCA blogs to learn as much as I can about these surgeries before hand. Unlike some BRCA blogs out there, I will promise right now that I will not be posting pictures of my breasts! No matter how good they look post surgery, I'm keeping them to myself. Can you imagine what would happen if a student came across pictures of their teacher's breast online? I don't want to find out.

I'm simply hoping that it can help keep my friends and family updated as I move forward with preventative surgeries. I also hope that it might help others considering going down this path as well.

For the next few days, I'll be posting a few excerpts from my journal to give a little history. Enjoy!