Implants are in!

I'm sitting here, writing this blog, and I've got two bags attached to my pants with safety pins, holding my drains.  I've got my favorite comfty hoodie on and Victoria Banks' song, "Someone Does" is playing in the background.  And all I can say is, it's done!  The implants are in, the scars are healing, and as soon as these darn drains are removed, the pain will subside.  I had my exchange surgery done on Friday September 23rd, and it was a success.  Other than feeling pretty wiped out from the anesthetic, and a little discomfort, I made it through, it's over.  And now life can go. I have had a few very low moments in the last few days, but I'm managing.  It's been hard to go through this surgery again, alone.  I miss my mom so much at these times.  Scott took me to my surgery on Friday, and then has been here daily checking in on things and bringing things I need.  It's hard to not have him here all the time to help, but that's the reality of separation.  The timing sucked, but those things happen. My neighbors have been a huge help, always checking in to see if I need anything.  The neighbor kids all came over on Saturday for a visit, and I really appreciated it.  Most of the time, I just sit and watch DVD's or chat with friends on Facebook.  The first few days it was so painful to get out of the chair, but I'm feeling more mobile now.  Yesterday I went up to the post office, and to the library, but was exhausted when I came back.  Three anesthetics in four months, I don't think my body is adjusting well.  I've had a few friends stop by, checking in and bringing me treats.  I'm not very entertaining right now, but I appreciate just having them here to sit with me.  Sometimes cry with me.  People have said I've been so negative lately, and not really looking on the positive side of what I did.  I'm sorry that people have felt that way, but Bevin doesn't ask for help very much, and I think that my negativity this time, was a cry for help. Taking care of myself when I'm in pain & not having any family close by, it's been hard...really hard!  I have been seeing a counsellor in London and thankfully she has called everyday to check in, and to chat with me.  We set goals each day, even if they are just small, of things I need to accomplish, and how I'm going to move forward from here.  It's great just having someone to talk to about everything, and have things make sense.

Today is Previvor Day and I am a previvor.  I have a predisposition to a hereditary or genetic link to Cancer.  There is a day to celebrate this, to share our stories with other people who carry this gene and to teach the general population about Cancer genetics.  When I started out with this surgery, I wasn't doing it just for me.  I wanted to know that I would be helping someone else, be it my family, my friends or a complete stranger who had a family history of breast cancer and wanted to learn more about genetics.  And as I read the comments and posts now, I think that I have accomplished what I set out to do, and I hope that I can share my story with many more people, and help change their lives too.

My friend Cheryl, who I met through FORCE, recently gave me a brochure for a program based in Florida called ICARE Inherited Cancer Registry.  It is a registry developed for individuals interested in taking part in studies on inherited cancers.  Basically I just filled out a questionaire, sent them a copy of my genetic test results and a family tree and if they need more information, they will contact me.  It's a database for research, and I was so happy to hear about it.  If my mutated gene, can help with research to save another persons life, then it's all worth it.  If anyone wants more information about ICARE check out their website at ICARE@moffitt.org

Time to get on with my day.  I'm hoping the nurse is coming today to take out my drains, but that depends if they are ready to come out or not.  I can't wait to have a shower!

It's been a while. Time for an update

What can I say?  I've been lazy and haven't kept up with this blog.  But I've had some people wondering lately how things are going, so I decided to take some time today and catch everyone up with what's been going on.  Oh life... I can't even begin to tell you how crazy the last few months have been.  Physically, i'm doing really well.  After the surgery, June 3rd, to deal with an infection on the right breast, everything went smoothly.  Although I was lopsided for a little bit before they could catch the expansions up, everything is evened up now.  I currently have 500 cc's in each breast.  The implants will be about 450 cc's, but they have to stretch the skin further than the expansion.  I went to see Dr.Ross last week to talk to him about the final surgery, scheduled for Friday September 23rd.  To be quite honest, we didn't even talk much about the surgery, all I basically said was "please just make my boobs look nice"  and that was it.  The rest of the time at the appointment was spent talking to nurses, nurse practitioners, & social workers about the rest of the stuff going on in my life.

When I first started this blog, I wrote something about being "happily married."  Well, all these months later, and Scott & I are separated.  It's hard to say when things went wrong, but people just handle things differently, and well, eventually we decide we need emotional support.   Five years ago when I learned of my BRCA2 diganosis, Scott was not there with me.  I saw surgeons & specialists all through the years, had multiple tests done and never once did he offer to come with me.   I remember sitting there in the waiting room, watching all the woman with their spouses/partners and thinking I was so strong to be there alone.  But inside I wanted so bad for him to be there.  On the occasion he did offer to come, there was always some complaint about having to take time off work, or driving the car to London and it was just easier to go alone, and not listen to the complaints.  I have been strong for myself and others for so long, and for once, I wanted someone to be strong for me.  I went through this surgery to give myself a chance at a longer life.  Not just for myself, but for my family.  For my husband, and for our future children. For the first time, Bevin was doing something for me, and yet, it was still for others.  That's just who I am.  I've learned a lot going through all of this though, and i'm still learning about the person I want to be.

I'm working at starting a group in Canada called FORCE (Facing our risk of Cancer empowered).  It's for women who are at a predisposition to Cancer because of a hereditary or genetic link.  I found the group after my first surgery when I was looking to find women to talk to, and now I'm going to start the group in Sarnia to meet other women going through the same thing.  I met with the breast cancer society last week, and they are going to provide the space for our meetings.  The first meeting will be held on October 26th, to teach people a little bit about Cancer genetics and share my story.  From there, it will be a support group for women who are BRCA carriers and we can share all of our stories.  I'm so excited to start the group and to meet other people that have gone through this same journey or who are considering this surgery.  It is in times that I am at my weakest that I am strongest for others, and I really hope that sharing my story and starting this group, empowers other women to learn about genetic risk factors.

Buckingham Fountain, Chicago

Although I've been really stressed out with everything going on, I have had a really fun summer.  I worked with Blackburn Radio again as a Summer Patroller, saw some Tiger games with my buddy Trevor & even caught a Chicago Cubs game in Chicago. I've made some great memories this summer with some great friends and now skating season is starting up again.  Unfortunately, I won't be able to do synchro this year because I just don't have the money, and the weekly trips to Chatham add up, but i'm back in Mooretown coaching.   Once my surgery is over, and I am healthy again, i'm going to start looking for full time work.  At this point, I really have nothing keeping me in Sarnia, so i've been looking everywhere for jobs.  Considering I have dual citizenship, I can also go work in the USA. Really my options are endless, so we will see where I end up.  I've got a whole life to live now, and having done this surgery, I am hoping I've given myself even a longer chance at life.

Johnny, Matt & I on Summer Patrol

I don't regret doing this surgery for anything, it was the best decision I could have ever made for myself.  Yes the timing of it all wasn't right, but then again, a Cancer diagnosis at any time wouldn't be good either.  I'm proud of myself for what I did, and I can't look back.  And I'll use this phrase to end this blog entry, "Today is the first day of the rest of my life."

My buddy Trevor & I at a Detroit Tigers Game.

Everyone needs a friend like him

In for another surgery....

**Graphic Content Warning**

So I'm just sitting here realizing that it has been a very long time since I last posted a blog.  I have just been so busy and haven't taken the time to sit down and write.  I actually had to have a second surgery yesterday because of an infection in my right breast.  The doctor isn't sure why it happened, especially a month post surgery, but it did, and when the antibiotics weren't working, he decided he needed to go in and figure out the problem. He decided this on Thursday morning, and booked the surgery for Friday morning.  I was really upset though, because I really didn't want to go back into surgery, and it meant they had to postpone someone else's surgery in order to accomodate me.  I remember how upset I was when they postponed my surgery the first time, so it made me feel terrible.  Either way, the doctor felt it was important enough to do it, and now that it's all over, i'm kinda happy he did it.

Last Sunday afternoon I started feeling really crappy.  I was shivering and shaking and really achy and I just knew something wasn't right.  I had been outside all afternoon with the neighbor kids, so I thought maybe I was just exhausted from that.  I woke up Monday morning and still didn't feel very good and the fever hadn't subsided.  I had to work at the radio Monday because it was Memorial Day, so I took some tylenol and went on my way.  I started to feel a bit better, and by Monday night, I was feeling better.  But the right breast wasn't looking right.  It was really red, really puffy, and way more achy then it had been.   I had an appointment scheduled with Dr.Ross Tuesday morning, so I just waited to see him.  As soon as he came in the room and saw it, he knew there was a problem.   He decided to still proceed with expanding the left breast, and then he starting removing fluid from around the expander on the right breast.  One of these days i'll have pictures to post to show how they do it, because it's pretty cool.   He wrote me a prescription for antibiotics and booked another appointment for the next day.  When I went back on Wednesday, the infection still hadn't subsided, and the fluid had built back up again.  This time the doctor decided to put a needle into the bottom of the breast to try to remove fluid.  Heres the thing, when he puts the needle in at the top, I have no feeling there from the surgery. But when puts the needle in at the bottom, where I have feeling, it hurts.  I don't think I've EVER screamed so loud in my entire life!  Thank God it only lasted a couple of minutes but it seemed like forever. He booked me to see him again on Thursday morning. The nurses in the clinic all know me by name now, and ironically, I know one of the secretaries sisters who is at the clinic as well.  When I would get to my appointments, they would page Dr.Ross to tell him I was there.  Apparently Dr.Ross is the "Mc Dreamy" around that clinic.  I'm not too sure why, he's not really anything special, and aside from that, he's old!   When I saw him again on Thursday, that's when he decided that things weren't healing up, and that I was going to need surgery.  He said the next place he would be seeing me was the OR in the morning.  Not what I wanted to hear!  But I guess it was for the best.  Considering last night I was able to get to the pharmacy, the bank & still go for pizza on the patio with friends (I didn't drive of course (thanks Trevor)), the surgery wasn't too bad.  I had a good sleep lastnight, (back to my chair again for a few days) and i'm sure i'll nap a lot today, but otherwise feeling good. The nurse will be in shortly to look at my dressings. I hate that I have to have a nurse though because i'm pretty independent and could probably do it all myself.  I will be calling my neighbor later to come wash my hair for me, since showering isn't possible while this drain is in. I've also had a friend offer to drive me to London on Monday for my follow up appointment.  The biggest annoyance with this drain is not being able to drive. Thank goodness for great friends!

So other then this minor setback of the infection, I really have no other complaints about the surgery.  I've been able to be active, out jumping on my trampoline, rollerblading, enjoying Detroit Tiger games and hanging out with friends.  Some people have been telling me i'm way to active and I need to rest more, but the doctor disagreed.  He said he would rather see me doing what I could and staying healthy to help my body to heal.  I have been recommended not to be pushing, pulling or lifting heavy objects, but other than that, if it doesn't hurt, go ahead.  He said the infection wasn't caused by anything I would have done, just my body trying to fight something off and it didn't know what do to about the "foreign object."  I'm doing well, feeling good and really still being very positive about everything I went through.

I'm back working part time at the radio station this summer, which I absolutely love.  I'm bummed out that i can't work this weekend though, because I can't drive!  But I'll be ready to go for next week.  I guess technically if I had a ride, I could work, it's not like doing radio cut ins are physically demanding.  I guess the biggest issue i'd have would be trying to get prizes from the trunk, and trying to close the darn thing.  Actually, that has been one of my biggest challenges since having my surgery, trunks are just really heavy and not having much of a pectoral muscle, makes closing them, difficult.

In about three weeks from now, I'm heading to Maine for my mom's family reunion and I'm really excited about it.  It will be so great to see my family and to just enjoy a week of relaxtion.  We are going to Point Sebago Resort.  The drive will be really long, but we'll manage and it's a part of the US that i've never seen before.  It means so much to me to see my mom's family because they are what I have left of my mom.  The best part is, the ENTIRE family will be there (well minus my husband Scott because he has been double booked for a work trip too).



Having some fun at a Detroit Tiger game. Comerica Park. May 24, 2011. 




Big Bike 2011. No I wasn't riding the bike, just out taking pictures. It's
bitter sweet not working at the Heart and Stroke anymore.





Until I got smaller

Well today was my first follow up appointment with the plastic surgeon.  I have been waiting for this day, since about the day after my surgery.  I went to London lastnight to visit with Terrie, and spent the night so I didn't have to get up early for the appointment.  I have not so hard in such a long time. I was in absolute tears we were having so much fun and laughing so hard.  We went to Dairy Queen and had a blizzard, and then went back to her house and did some Zumba.  I had to quit a little early because my arms were a little sore, but we had fun!  Oh the memories of high school! 

When I got to the hospital this morning, I was met by Nadia.  She is a research assistant helping Dr. Ross & Dr. Temple, two of the plastic surgeons.  I'm involved with this study they are conducting regarding "memory loss after a major reconstructive surgery"   There was earlier research that showed that people having cardiac surgery may have some memory loss, so they were doing the research with major reconstructive surgery.  Good news is, their theory is being proven wrong!   I did a test two weeks before my surgery, and then another test today.  I'll do another one at 3 months, 6 months and 1 year post surgery. I'm not really sure why they are testing the control group so close to surgery, because the more stressed you are, the more your memory doesn't function.  Now that my surgery is out of the way, I feel so much less stressed and can actually think a lot clearer.

The materials for tissue expander.  Thats saline
in those syringes.

I finally got called in about 9:45 (30 minutes waiting isn't too bad for this clinic.  I've waited 2 hours before).  The nurse came right in, and got things set up for the expansion. They were quite impressed it was my first follow up and I was feeling so good.  We talked for a few minutes, then she had me change and lay down.  Dr. Ross came in a few minutes later, and went through the whole process.  There is a metal piece on the expander and he uses a magnet to find the metal piece and them makes an X.  He then puts a needle into the metal plate (I have no feeling, so I don't feel any of it) and then injects the saline.  It's a weird feeling because you can feel the saline going in.  He injected 50cc's into the right side, but then decided that he was a little concerned that there was too much fluid sitting around the expander, and so he moved the needle, and then took out some fluid.  It was pretty gross, but I watched him do it. Needless to say, he put in 50cc's into the expander, but removed about 60cc's of fluid from around the expander, so I ended up with smaller boobs then when I went in!  Oh well, I go again next Wednesday, and hopefully then i'll see a change.  He said he can put in 75cc's at a time, so I will notice a difference each week. The process will take about 5 or 6 weeks, and then they wait a couple months before putting in the implants.  This could mean by the end of the summer, the process could be complete.  Then we talk about nipple reconstruction.

The magnet they use to find the metal in the
expander

The syringes after he removed the fluid

Immediately after the expansion

Mr.Monkey waiting patiently for the doctor

Find strength from within

Who would have thought just two weeks after surgery, i'd be feeling so good?  I don't think I ever could have imagined that i'd be out and about so quickly. The healing process has gone really well and I'm feeling really good.  I don't have any pain, it's more of a discomfort I'm feeling.  The left breast seems to be sitting really low, and is uncomfortable at the bottom.  The right breast seems to be pushing against my sternum and sometimes I get really sharp pains that last for just a few seconds, but it's really uncomfortable.  I really hope that I haven't done anything to shift them, and that it's normal what i'm feeling.  All of the bandages have now come off, and the steri strips came off yesterday.  The scar looks decent. It's a lot thinner than I thought it would be, the ends are a little thicker.  There seems to be a couple of stitches that need to be taken out, but I'll wait for my appointment with the doctor Monday.  If all goes well, that should be my first expansion day.  Then the fun begins!



Left side drooping. Right side is
into the sternum

 So during the last week, I've had a lot of time on my hands and i've done a lot of thinking.  It's funny that people use to always tell me how strong of a person I was, and that I could get through anything, and I'd listen to them say it, and never really truthfully believed them or really understood what they meant.  Yesterday, when I removed the steri strips, I looked in the mirror at the scars, and for the first time ever, I was able to say "Bevin, you are strong."  For me, that was a huge accomplishment.   I have scars all over my body, and as Matt said today "Scars tell stories" and I have a lot of stories to tell, but those stories have made me who I am.  They say that God only gives us what he knows we can handle, and apparently he has some belief that I can handle an awful lot.

St.Clair River

Sunday was Mother's Day, and like every year, it was a very hard day.  I got up in the morning, and went to church and the song selection that day, was nothing other than two of my favourite church songs that remind me of my mom, "On Eagles Wings" & "Amazing Grace."  At one point in the service, I started to cry.  Like literally the tears just started rolling, and for no good reason at all. I think I realized something that morning in church, and i'll come back to it after.  After church I came home, and picked up my little neighbor Aaliyah.  Every year for Mother's Day, I get the kids together, and do a craft of some sort for their mom.  Two years ago we made her a stepping stone for her garden, and last year we made cookies.  I sat in church this year and thought "wow, I completely forgot about the Mother's Day craft"  Must have had a lot on my mind these last few weeks.  Either way, I knew I couldn't let a Mother's Day pass by without doing something for their mom.  Aaliyah and I drove down the river to Riverhouse Gifts, a store that a former coworker of mine owns.  She put together a basket of goodies for us. Watching her shrink wrap the basket was probably the most exciting part of the day.  We stopped at the water on the way home.  I've never really had a way of honoring my mom on Mother's Day and then the other day a friend of mine gave me the idea of putting a flower in the water. When my mom died, we cremated her, and her ashes were scattered at the base of the lighthouse at Lighthouse Point in Connecticut, she loved the ocean.   Aaliyah and I walked to the waters edge and threw in the flower.  She saw the tears in my eyes, but didn't really say too much.  We just watched the flower float away for a little while, and then we walked away. When I got back home, Scott was still sleeping, and I sat down and texted to a friend.

 I wrote "I need a sledge hammer and something to hit...HARD.  I realized being at church this morning that I have so much anger inside of me about so many things.  I hate that my life has been so unfair... and now to deal with it" And in saying that, I felt such a sense of relief.  The first step to healing is admitting what is wrong.  I think for a long time I have just been angry about so many things, and I've never let myself deal with it.  You bandage wounds by putting on a smile and pretending that everything is okay. Life hasn't dealt me the greatest hand of cards, but i've pulled myself along.  And going through this surgery, I was able to say "You know what God, you created me with this gene, to make me who I am, but i'm not going to let it take me.  I'm sticking up for me this time, and I hope that we can still be friends"  I'm a previvor, I underwent this surgery to make my life better.  So that I have a chance at living a long, healthy life and can be the best wife, the best mom, and the best friend that I can be.  I have found my inner strength, I know what I want in my life!

Heading out for a rollerblade

The rest of Mother's Day we spent at Scott's parents in Ridgetown.  It was great to feel the warm sun.  I went rollerblading & bike riding and just had a great afternoon in the fresh air.  I'm finally smiling now, and it feels so great! 

I did it!

**GRAPHIC CONTENT WARNING**

This morning I woke up, after not sleeping very much and I decided that I needed to shower.  The nurse told me that it was okay, as long as I was able to put the dressings back on.  It's amazing the little things that are difficult to do after this surgery, but I knew I could do it.  I got myself undressed, got the shower running (which trying to pull the tap was probably the most difficult part) and finally was able to take a shower. It felt so good.  While I was in the shower, I had to brave the inevitable and remove the dressings that were on there.  It hurts a lot less when they are wet.  For the first time in a week, I saw the scars.  They are stitched, and there are steri strips holding them together, but really, they aren't too bad.  It was nice to clean the wounds.  When I got out of the shower, I could look in the mirror and get a good look at them.  A little shocking I guess, but not too bad.  I could actually feel them for the first time too.  That was weird!  The expanders are in, and they feel really weird.  Nothing like feeling plastic inside your boob.  One side seems to look different than the other, but the doctor did tell me to remember they are sisters, not twins.  I think that I'm okay with how they look.  Once the expansion process starts, they will change again.  The scars will heal.  I was able to wash my hair, dry it, and get myself dressed.  What a great feeling!

First time with bandages off.  Rt side is swollen
Lt side is normal.  The left expander is hanging a little



The Rt side with drain site bandage

 I have started to do a lot of online research since my surgery.  I guess I have the time now that I'm limited in what I can do.  I have found a lot of support groups online for women who carry BRCA genes & women who have gone through PBM's.  It really makes me feel good to read about other women in this same situation.  There is actually a term that they use to describe people that are at risk of cancer due to genetic dispositions called previvors.  It's interesting they have a term for it, but I guess it makes people feel they have a term.  Ironically before this week, i've never heard the term.  I also found a group called Force: Facing Our Risk thats in the US and they are all about hereditary breast & ovarian cancers.  I was very pleased to read their website and get a whole lot of great information.  I emailed the volunteer contact about setting up a group in Canada.  If I can share my story with other women, and can raise money for this organization, i'd feel like I was doing my part.  The link to the website is facingourrisk.org.  

My first day out

**WARNING GRAPHIC CONTENT**

So the annoying drains that they put in after the mastectomy surgery came out yesterday, just five days after surgery.  The doctor's requisition said under 30 cc's or 5 days.  I was definately not at under 30 cc's, so I was happy he put in the 5 day mark.  A women I know, that has just undergone a mastectomy because she has been battling breast cancer, came and sat with me while the nurse removed the drains.  I'll be honest, it hurt like HELL!  Thank goodness the pain only lasts for a few seconds.   It was a very intense, burning/stinging kinda feeling.  Once the first one was out, I thought, oh damn, there is still another one!   But aside from the pain, those things were annoying and I'm so happy they are around.  The nurse bandaged up the holes where the drains were, and said she would return today to clean them up.  Well, apparently I heal very quickly and she was rather surprised that there wasn't any drainage that had leaked out, and the holes were already closed!  She called me the "super healer chick," which I thought was rather funny.  I guess my body is just ready for all of this right now.  I'm young, I'm healthy and I was mentally prepared for this surgery.

Hemovac drains

When the nurse was here today, she also changed the dressings from the breasts.  I've been very nervous to see them, and when I saw them, I kinda gasped. She kept saying they looked really tidy, but honestly, there is a huge line across my boob, that is being held together with steri strips and stitches and it looks a little ridiculous.  I'm quite content just keeping the bandages over them for the time being until they heal more.  I'm sure once the stitches come out, and it's cleaned up more, I'll be okay with it.  I'll take pictures and post them tomorrow when I finally get to take a shower.



The end of the hemovac hurts
the most when its being removed

 Good news though, I was able to get out in my car today and go for a drive!  Who would have ever thought that six days after surgery, I would be out driving?  I went to visit my coworkers, had lunch with a friend, and then came home.  My dad came to visit this afternoon and took me for dinner at the Olive Garden, my favorite.  I was almost ready to cancel on my dad because I was just so exhausted from the morning out, but I'm glad I went.  Tonight i'm feeling rather tired, and my body is really achy.  For a short while, I felt like I had a bit of a bug.  But I think it's just my body reminding me that I've just undergone major surgery and I need to rest.  Tomorrow I just plan to stay home, and relax.  I'm hoping for some sun at least, because all of the rain we have had, has been rather depressing.

They say that when you are put under and anasthetic, it sometimes makes changes to your body.  A lot of people talk about how their hair feels gross, or their cycles change, or whatever.  Honestly, I can say that I haven't had any of these things happen at all.  My hair was just fine, and my cycle still remained clockwork (maybe thats the reason i'm not feeling so well today).  I really had a great doctor for this surgery, and he knew what he was doing. 

One cool thing that I can share with women who are planning to have PBM's is something called a Breast Binder.  I had never heard of them before my surgery, and when I woke up I was wearing one.  When you come out of surgery, they will wrap your chest very tightly with a bandage or whatever.  This pressure that is on your chest, saves you from lots of pain.  In fact, when the nurse tries to remove the pressure, it hurts really bad.   I woke up wearing this thing called a breast binder, and I can highly recommend that you ask for one.  It looks like a tube top.  Mine is blue and has flowers on it.  It has velcro in the front of it to do it up. It was specifically designed by a breast surgeon, and what is so fantastic about it, is that I can wear it around and it just looks like i'm wearing a shirt.  It even came with straps so I can make it a tank top, rather than a tube top.  I've talked to a lot of women who have had this surgery, and none of them have used the breast binder before, but admit it would have been nice.  Saves you from being wrapped in bandages.  The website for the company that makes them is http://www.eabmedical.com/ and they are based out of California.  It might be wise to ask your surgeon if they have them before your surgery, and if you would benefit from one.  It's just a nicer, more appealing dressing then gauze. I've asked around here, and no one seems to carry them.  I might try and get some for the hospitals in our area, because they are so great!

Truth of the Matter

It has been a long couple of days.  This journey that I'm on is an emotional one and I don't think I could have ever prepared for everything i'm feeling on this recovery process.  Truth be told, I think the one feeling that I've felt the most is lonliness.  I can't believe how lonely this experience has been, and it makes me really miss my mom.  I feel like I don't have anyone to be here with me, to take care of me and to hold my hand.  Mom's do that for us, and she's not here, so i'm relying on friends.  Everyone around sends messages that they are thinking about me, and praying for me, but nothing really compares to those visits and the phone calls that help to make me not feel so alone.  Scott goes off to work each day, and I've spent the days alone.  Friday night, Scott went out with friends and didn't come home.  A friend came to visit for a couple hours and we had a great visit and a great cry.  But the overnight hours, I was alone.  There is nothing like trying to get myself up in the middle of the night when I have to go to the bathroom, and not having anyone here to help if I needed it.  Truth is, I can do it by myself, but what if anything happened?   He didn't come home until late this afternoon.  The nurse had already been in to change my dressings (which was a whole other emotional issue)  and we had a house full of kids playing when he got here.  He was tired from having been out, then grumpy because he had been drinking, and guess who took the brunt of the anger?  Me. 



My stuffed monkey from Trevor.
There for hugs, all the time.

 I had an argument today with a really good friend of mine, and I was really upset about it and it was really making me me sick, which at this point, isn't a good thing.  I was talking about how friends are supposed to be there for us and help us out when we need them.  It seems like when I need people most, they aren't there.  They have other plans, other commitments, other priorities.  I guess I just figured that going through something like this, people would be here for me.  We can see our friends anytime, but when friends are going through hard times, it's when we need them the most and i'd hope they could be there for us.  After the argument I decided that I wasn't backing down.  I'm going to learn it's okay to ask for help, it's okay to expect that friends will be there for us, to support us and love us, and to understand that sometimes things aren't fair.  

I'm exhausted, I'm emotional and I'm in a whole lot of pain, but I know that I've done this for a good reason. In some of my weak moments I ask the question "why I did this?".  I wonder if holding off on the surgery would have been a better idea.  I guess no time is a good time, but maybe I should have made sure I had more supports in place before I went through with it.  Truth of the matter, you can't go through this alone.  This whole decision, this whole process is very draining, both physically and mentally and if I can tell you one thing, don't ever try to do it alone.  Make sure those people around you, are commited to being your shoulder to cry on and hands to hold before you try and take on this surgery head on.

Surgery went well

Justin, Dad, Me & Leah

Brooke & Me

Well, i'm alive.  The surgery went really well and i'm home recovering now. Honestly, I thought I would be in a lot more pain after such a surgery, but i'm not really.  The drain sites are starting to get really itchy, and I can't wait for the nurse to get here to change the dressing.  I'm really hoping she will be able to take the drains out today or tomorrow because they are rather annoying.  Otherwise, the expanders are a little uncomfortable feeling, but I can't complain because I thought it would be a whole lot worse.

Siblings. Justin, Me & Leah

My surgery was at 9am yesterday, and they were right on time.  The breast surgeon is actually on maternity leave right now, but came in to do my surgery.  It was the first time I actually heard the plastic surgeon laugh.  He is a pretty monotone guy, but when I said to him before the surgery "don't ruin me" he actually laughed and said he would take good care of me.  So far things look good.  It's really weird looking down and it's just flat, but there is a little bit of a bump there.  Right now it's all bandaged up, so I'll be able to tell more when they come off in a few days.   The darn nurse who put in my IV really killed my hand.  Thankfully, they noticed it wasn't in right, so they moved it while I was in surgery.  I've had IV's before and I knew it wasn't supposed to hurt that bad.  Honestly, it was probably the most painful thing all day.   I woke up from surgery at about 12 noon, and apparently was in a lot of pain.  Apparently asking for friends was more important to me then drinking apple juice. They gave me more morphine and I went back off to sleep.  I guess I was pretty agitated and distressed, but after I woke up more, I was feeling fine.  They were quite impressed that I didn't need more pain medicine.  Actually I've done pretty well with pain control.  It's more discomfort that i'm feeling than anything else. When I move certain ways, I can feel the expanders inside me, and that's a little akward.  I'm quite impressed though that I can lift my hands over my head and pull myself up.  I'm not able to lay down flat, but I knew going into the surgery that I wouldn't be able to do that for a little while.  I'm sleeping at night in a lazy boy chair, and even though it's not overly comfortable, I'm managing. 

Leah, Scott, Justin, Brooke and I. Right
after surgery

My mom's friend Pat came and stayed with me for the day today.  She was such a great help.  We had a great chat and she was so wonderful and made dinner for us tonight. The nurse was in today to change my dressings and she was actually really pleased with the look of the wounds.  She said she has never seen a mastectomy that wasn't bruised at all, and there is absolutely no swelling.  The doctor did a great job.  I go back to see the surgeon on May 17th to start the expansion process.  I don't think the whole emotional side of this surgery has really hit me yet, and I know that is probably still to come.  I've had a lot of emails from friends and family who are praying for me, and sending positive thoughts, so that helps to make me feel better.  And my former coworkers at the radio station sent me a huge fruit basket today, which was a wonderful surprise.   Time for some rest now, it's been a long day.

Day 1. Drains are in. Breast Binder
still on. 

I am ready

Well, tomorrow is the big day.  I think I can talk myself through all of this in my head and yet, still there is a part of me that is scared.  I'm not really even sure what I'm scared about, but something in the pit of my stomach just isn't right.   I'll wake up tomorrow, after surgery and that feeling will be gone.  I can't wait for the thought of "I never have to worry about breast cancer again".   I'm sure when I wake up from the surgery, i'll be thinking a whole lot different than that, more along the lines of wholy crap, i'm in pain!    But I can fight this pain. I have made this decision in my life, to say to myself and others, we can do something about breast cancer.  As scared as I am, I know that my mom will be with me and I will get through this. 

I have a whole long list of things to do today for "Bevin." To be physically prepared, mentally prepared and emotionally prepared for this huge journey I'm about to take. And hey, the other side of the surgery won't be so bad.  How many women get to choose their breast size?

As quoted by a dear friend of mine "Look forward not back, don't ever second guess why you are doing this"

I am strong, I am brave, I am ready.

Got my pink pillows

Today I went for my pre operative appointment at the hospital, and I think that reality has set in.  The surgery is fast approaching, and I'm starting to get scared, really scared.  I've always been so brave in talking about this surgery, and now that it's approaching, I'm so nervous about it.   The nurse was really helpful in answering all my questions and she reassured me that I would be just fine.  The first few days after surgery are going to be tough.  She was honest in saying that this procedure is really painful, especially since they will putting in expanders at the time of surgery.  The expanders are a little akward and uncomfortable, but I will get use to them.  Every week i'll see the plastic surgeon and he will inject more saline into them to stretch the skin. Eventually the expanders will be removed and implants will be put in.   Apparently for the first few weeks after surgery, I won't be able to lift my arms over my head and i'll be forced to wear button up shirts.  PJ's here I come!   They gave me a couple of pink pillows today that sit under my arms to keep me comfortable.  The pillows are so soft!   They also gave me some bags to carry the drains in, so they don't hang down!  The drains will stay in for five days post surgery and then will be removed.  I've convinced myself that I need to be healed and ready to go a week after surgery, I don't do well staying indoors and not doing anything... plus, I hate soap operas and talk shows only tell us about the crazy people in the world.  Hopefully I'll be strong, and will heal quickly.  I finished work on Friday, so I'm off until the healing is done, and I'm ready to find work again.   Maybe while I'm off, i'll figure out what I really want to do with my life and where I want life to take me.  Either way, the surgery is just 2 weeks away, and I'm not backing down.  I've gotta be brave, strong and put trust in those people around me, friends and family who will help me to get through this!

Surgery has been rescheduled

One of the most difficult things about undergoing this surgery, is the timing of it all.  No time is a good time to put myself out for 6 months of my life to heal, but then again, having Cancer at any time in my life won't be convenient either. I guess I just take my losses, and get through it now.   The surgery has been postponed until April 27th.  The plastic surgeon was going to be away the beginning of April, so they had to change the date.   When I got the phone call last Friday about the surgery being postponed, I was annoyed as heck and so frustrated   Hopefully now, things will stay on track, and not be cancelled again.   Emotionally I just have to get through this, and be prepared for this big step in my life.   I guess the one good thing about the surgery being changed is that I will get to skate at Adult Nationals this year in Sarnia, for synchro. Practices start next week and I can't wait to get back on the ice. 

Genetic Testing

Whenever I tell people I was found to be a positive carrier of the BRCA2 mutated gene, the question always comes up "Well how do you know?  How did you get tested?"  That is one of the things that I think that more people need to know about, and know that the option is there.  Let me first start by saying that that only about 5% to 10% of breast, ovarian & colectoral cancers are linked to a strong family history of cancer.  Cancer ran on my mom's father's side of the family.  My grandfather (and apparently other distant relatives)  my aunt, and my mother all had Cancer.  The age of diagnosis of both my aunt and my mother were relatively young (~31, ~42) so the question came up about family history and a possible genetic link.

  I was probably about 20 years old when I started looking into Cancer Genetics and decided to discuss things with my family physician.  I told her that I had learned about the London Cancer Genetics program and I wanted to investigate further a possible genetic link.  The doctor didn't support my decision and felt that learning of any sort of genetic link would cause me more stress in life, and said that she would continue to monitor me because of my mother's cancer.   I didn't like her response, and I was determined to at least have the opportunity to investigate things further.  At an appointment with an OBGYN, I discussed with him my interest in learning about Cancer Genetics, and to my surprise he offered to write the referal that I needed in order to proceed with the investigation.

 I received a package in the mail about 4 weeks later, that my mom and I had to complete.   There are a number of questions (like 10 pages) to be filled out.  The questionnaire asks about the family history, and they ask that you give them any pertinent information.   My mother and grandmother were both still alive at the time, so I was able to ask them both alot of the questions with a lot of names and dates and stuff like that.  Once the paperwork was completed, my mom and I were asked to go in to talk to the genetic counsellors and learn more about the BRCA1 & BRCA2 genes, and what they could mean in relation to the family history.  We both had to meet with a genetic counsellor individually to determine if we were psychologically prepared to learn if we were carriers of the gene, and the risks associated with it.  (I think I remember my mom laughing thinking "risks associated?  I've already got Cancer, what other risks can they tell me?"

For myself, learning if I was a carrier of a gene, meant that I would have many things to consider.  Things like that fact that there is a 50/50 chance of passing the gene on to any children that I have, or just simply knowing that I carry a gene, and would mean that my chances of developing Cancer would be greater.   Here's the thing though, I wanted to know.  After the counselling session, I knew that I was ready. Anything they were going to tell me, i'd deal with later, I just wanted to know.

They drew my mom's blood first, and the process took a long 9 to 10 months to get her results back. They say its like looking for a needle in a haystack I guess. They have to take her DNA and basically look at every strand until they find what they might be looking for.   And well, when they found what they were looking for, it was a mutated BRCA2 gene.

I think it was June of 2005 when my mom received her positive results for the gene mutation.    My mom was undergoing treatment at the time for metastatic breast cancer, in her bones, but she made the trek from Barrie to London to meet with the Genetics team.  They told her of her positive results (which believe it or not, really didn't surprise either of us) and then I decided that day to have my own blood drawn.  I would wait almost a year for my results.

Mom died in January of 2006, and in April of that year, I received my positive results.  A good friend of my mom's came with me to meet with the genetics doctor and he told me that I also tested positive for the gene.  He explained to me that I would now be admitted into the "High Risk Breast program" through Cancer genetics and would be monitored closely.  I was offered further counselling for the results, but never felt the need to pursue the offer.   Never once, did I have any negative thoughts about the positive diagnosis.  I guess I just knew all along that there was a good possibility that there was a chance that I was a carrier, and I would deal with things as they came.  

The high risk breast program set me up with a breast specialist, a plastic surgeon, and an ovarian specialist (I also have a 40% chance of developing ovarian cancer because of this gene vs. general population of 2%).  I was to meet with the breast specialist first to discuss my options, and decide what I wanted to do.  The specialist also set up referals for mammograms & breast MRI's every 6 months for better monitoring.  I have also been seeing the ovarian specialist every 4 months for ultrasound and bloodwork to rule out ovarian cancer.  Once I am done having children, they have recommended I also do an oophrectomy (removing the ovaries) to prevent ovarian cancer.  The decision to pursue the mastectomy went back and forth for some time.  At first I wanted to jump right at the opportunity, but then life got busy, and the decision was put off.  When meeting with the breast specialist at my last appointment in January, it was decided that we would move ahead with the mastectomy now, in order to prevent any problems down the road.  My body is a "ticking timebomb" and no one knows when or how that gene will decide to do it's thing and multiply the abnormal cells.  Better to get it done and be safe, then worry down the road.

I do not consider this gene a death threat.  I consider it to be a part of my mom that I just happened to acquire.  It does not mean that I have an illness, or anything wrong with me.  How many of us carry genes that we don't even know about?  How many more diseases and illnesses out there are gene related, and science hasn't even made the connection yet.  I'm lucky that I know that I carry this gene, and i'm lucky that there is something I can do about it.  I will pursue having children, and if they acquire the same gene from me, they will have the same choices and options that I have had.  Twenty years from now, when my children are grown we'll hope they have found a cure for Cancer, and who know's maybe even another way to prevent the disease.  I will share the knowledge I have, being a carrier of a BRCA2 gene with my children, and let them decide what they want to do about it.  I have choices, and they will too!

A bit of the history

I remember the day like it was yesterday.  Where my dad was standing, where I was standing and the words to be spoken, the words no kid wants to hear "Your mom has Cancer," and the absolute rush of emotions that ensues and the crazy thoughts that started running through my head.  That moment was only a short version of what the next eleven years would look like as the battle with the disease continued, and eventually took her life.

I'm 28 years old, married with no children, and we are starting to plan for the future of our family.  I have made the decision that I will not allow my children to have to endure the same life that I went through.  I am taking a stand to say "I will not have breast cancer". In 2006, shortly after my mother died of metastatic breast cancer, I was tested and found to be a carrier of the BRCA2 mutation, the dominant gene related to breast cancer.  This means that I have an 85% chance of developing breast cancer vs. the general population of 12%.  After discussions with my family, doctors & friends, I have decided to have a prophylactic (preventative) bilateral (both) mastectomy (removal of breasts) with reconstructive surgery.  I'm making this choice and saying to myself and others, I will not let breast cancer take my life.  I will not make my children have to endure a life with an ill parent and all the emotions that come with it.  I also hope to empower other women with a family history of breast cancer to discuss their options with their doctor and make the same choice I am making. There is no cure for breast cancer, but there is prevention.  And for me, prevention is the best cure i've got.  My surgery is scheduled for April 6th, 2011.  I want to keep this blog of my journey and share it with other women.  My hope is that, in doing this surgery, I will not only change my life, but I will also empower women to change their lives too.   I hope to send a powerful message to women to say there IS something we can do about breast cancer!