Saturday, October 23, 2010

The Sisterhoods Among Us

Just to put it out there first off – I am absolutely blessed to have the rockstar husband that I do! He is a tremendous support and we are pretty much one being. I honestly don’t know what my life would be without him. Also, my Dad, Father-in-law, and brother-in-laws have all always been so wonderful and supportive of me too, however, they are not female! And this post is dedicated to the AMAZING women in my life!

There is something about having strong women in your life that truly makes a difference. A HUGE difference! Sometimes you feel a certain way or need someone to understand, commiserate, empathize or sympathize with you and for some reason only a woman can be that person. I have had excellent examples of strong women throughout my life. My Mother was strong, brave, loving, sweet and funny (to list just a few). She taught me so many wonderful things and had an impact on many lives. At her work at the university she was always referred to as the “Mom away from home.” Something she wrote to me in a letter when I was away doing an apprenticeship before my senior year in high school is something I reflect on often. She had said if she could, she would take away all of the bad things that happen to me and make everything good all the time. She then said that “without the bad times the good times wouldn’t seem so good”. That is so true! If things were always wonderful, what would you have to compare them with to know that they are indeed wonderful? I feel cheated to have lost out on so many years with my Mom, but blessed to have had her for 18 years.

I am extremely fortunate to have been blessed with such an amazing Mother-in-law, who has been through a lot with me: my Mother’s death, my wedding, my college graduations, the birth of my babies, and my recent decisions and surgeries regarding my BRCA1 status. She has been a rock for me and has always treated me like one of her daughters. She came and stayed with us for two weeks following my initial mastectomy surgery. She took wonderful care of the boys, cooked, cleaned, did laundry, made beds, shopped and of course took excellent care of me! I am so lucky to have her.

I have also been blessed in life with 2 sisters and 4 sister-in-laws (whom I’ve known since I was 14!). My sisters (all of them above!) are an incredibly important part of my life. Something my Mother always told us girls was to be nice to one another because one day we were all each other might have. These wonderful ladies have lent ears, given advice and been solid supports through all of this. As a collective unit they came to the hospital every day, made me a surgery basket (that included everything but the kitchen sick!), picked up food and goodies for my husband, brought dinners, sent flowers and goody baskets, called, sent supporting, loving texts, cards and messages, and even dry-washed and brushed my hair when I was still in the hospital and not able to shower yet! My sisters are so sweet and kind – I love them so!
I also have several close female friends who are truly wonderful women who have been so sweet and supportive to me for, well, as long as I’ve known them! One of my dear friends told me she couldn’t figure out how to send yummy hot lasagna, so chocolate and coffee would have to do! Oh darn! I guess if I have to suffer, I’ll force myself to eat chocolate and drink coffee *sigh*! :)

I am so thankful to my family, including many fantastic aunties, and friends – they mean the world to me.

During my search for support and information regarding my choices and decisions for being BRCA1 positive, I found many support groups. FORCE (Facing Our Risk of Cancer Empowered), I already blogged about here. Another one is BRCA Sisterhood on Facebook. It was started by Teri Smieja and Karen Malkin-Lazarovitz. BRCA Sisterhood is a place where you can post anything you need to ask, share or vent about: questions regarding surgeries, screening, doctor appointments, concerns, fears, triumphs, etc. I have found the ladies on this site to be so sincere, helpful and understanding. They are there to lend an ear, ease your worries, tame your fears, or just give you a virtual hug when that’s all that can be said at times. One of the kind ladies on the Sisterhood mentioned the nausea patch to me after my horrendous experience after my initial surgery. Having that tidbit of information allowed me to ask my doctor and get a major reprieve from nausea after my second surgery! What I’m trying to say is it’s extremely helpful to have a support base that truly understands what you are going through and what you are feeling. My family means the world to me, but it has also been a blessing to have found BRCA Sisterhood and have another group of women that want to help, listen and love.

Below is the definition of sisterhood:
Main Entry: sis•ter•hood
Function: noun
Date: 14th century
1 a : the state of being a sister b : sisterly relationship
2 : a community or society of sisters; especially : a society of women in a religious order
3 : the solidarity of women based on shared conditions, experiences, or concerns
(http://www.merriam-webster.com/dictionary/sisterhood)

I especially love #3 “the solidarity of women based on shared conditions, experiences, or concerns.” Doesn’t that seem to include all of us? Even our mothers and friends are part of a sisterhood with us because of a solidarity we all share, even if it’s just being a woman. That is the remarkable thing about women – we bond with each other. Even if it’s not someone we know all that well – we are willing to help, listen, and share. We want to help others out and don’t like to see someone suffer or feel alone. We are there for each other because that’s what we do. I am so happy to be a part of numerous sisterhoods in which I have created everlasting bonds with wonderful women who have taught me how to be a better woman.
From the bottom of my heart, THANK YOU! All of you tremendous women in my life who have shown me love, compassion, kindness, strength, bravery and courage. I am forever in your debt.

Until next time, here’s to WOMEN, STRENGTH and SISTERHOODS!

Tuesday, September 7, 2010

September is Ovarian Cancer Awareness Month


September is Ovarian Cancer Awareness Month. Those of you who know me, have read my “About me section” or have been following my blog know that I lost my Mother to ovarian cancer when I was 18. She was only 49. We also lost my aunt to ovarian cancer when she was 52 and my great grandmother to ovarian cancer when she was 43. My Mother’s and aunt’s stories about their ovarian cancer diagnoses are very different. My aunt had been having severe stomach pain (especially after she ate), shooting pain down her legs and horrible periods for a while and went to see her doctor. He told her he thought the pain was caused from her high stress levels and to go home and do stress exercises. She eventually got a second opinion and they could actually feel the tumor before even running any tests. She was diagnosed at, age 50, with Stage IIIb ovarian cancer that was already on the liver. On the other side of the spectrum, my Mom found hers early. She was having very bad side pains that eventually made my Dad talk her into going to the ER. They thought it was her appendix and as they were in surgery, they found that one of her ovaries had gangrene (years before she had had her tubes tied). They took that ovary out, but left the other one in and when they performed pathology determined she had Stage II ovarian cancer. I was only 14 at the time and my Dad had been with her the entire time in the hospital and left to pick me and my sister up from school to bring us to see my Mom. During those 20-30 minutes (seriously, the hospital is just down the road from the schools), a doctor came into my Mom’s room and told her she had ovarian cancer and there was nothing he could do for her but make her comfortable for the next six months. My poor Mom! It had only been about 4 months since she lost her sister to the same disease and now she finds out she has it too. Luckily, my parents decided that doctor was a jerk and got a second opinion. I believe that is probably why she lived long enough to see me graduate from high school (about 4.5 years longer). I suppose she may have only had 6 months to live had she just assumed that doctor knew exactly what he was doing and had listened to him.


I wanted to share the details with you because ovarian cancer is known as the silent killer. Ovarian cancer survival rates are much lower than many other cancers that affect women. The symptoms that seem to be most associated with it can often be mistaken for other health issues, which in turn can contribute to a later stage diagnosis. To spread awareness of 4 main symptoms of ovarian cancer, several organizations, including the Ovarian Cancer National Alliance, the National Ovarian Cancer Coalition (NOCC), the Ovarian Cancer Research Fund (OCRF) and the Gynecologic Cancer Foundation (GCF) have combined forces to spread the word, BEAT. BEAT stands for Bloating that is persistent, Eating less and feeling fuller, Abdominal pain, and Trouble with your bladder. Additional symptoms commonly reported include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities; however it is important to note that these occur at an equal rate in the normal population of women without ovarian cancer (http://www.ovariancancer.org/). A woman in the normal population has a lifetime risk of about 1.4% and women with a BRCA1 or BRCA2 mutation have a lifetime risk ranging from 10-60% of developing ovarian cancer. The 5- and 10-year relative survival rates for ovarian cancer patients are 46% and 39%, respectively (http://www.ovariancancer.org/). The survival rates, of course, vary depending on the diagnosis stage. Although mortality rates for many cancers have decreased over the last 30 years, ovarian cancer mortality rates have remained unchanged. The Ovarian Cancer National Alliance has a wealth of information and statistics and also flyers to spread the word on BEAT (http://www.ovariancancer.org/).

The main message of this post is to please be aware of your body and trust that you know your body better than anyone else. Trust your instincts and be your own health advocate. Maybe spreading a little knowledge on known symptoms will one day help a woman get to her doctor a bit quicker than she normally would have. Please pay attention to your body, know your family history and stay persistent. Awareness and knowledge are power!

Oh and go teal this month! It’s the ovarian cancer awareness color. Check out Teal Toes!

Until next time, know and spread the word of BEAT, pay attention to your body, and stay healthy! :)

Friday, August 13, 2010

Exchange Surgery Aftermath

Today is 1 week and 1 day after my exchange surgery, which was on Thursday August 5th. It is amazing the difference between this surgery and the mastectomy surgery with reconstruction. I cannot believe it is only a week post surgery. This time I was able to raise my arms enough to get a shower on my own on Friday evening (the day after surgery!). Last time it was about a week before I could even sort of lift my arms enough to wash my own hair and even then I was bending my head down and it was difficult. This time I have not needed anything to help me sleep at night, I only took pain killers a couple times during the first couple of days. The pain is nothing compared to last time though. With the mastectomy surgery, as I’ve mentioned before, I had a lot of pain the first couple days. Not just from the sutures or stretching of my chest muscle from the expanders filled with 800cc, but I think the majority of pain those early days is from the removal of all of the breast tissue, probably from all of the nerves being cut. However, this time around there was no removal of any tissue; just incisions through the original incisions on the underside of each breast. The expanders were removed from the developed pockets made by stretching my chest muscle and also using alloderm. (Alloderm is a tissue matrix that is made from donated human skin and is stripped of all characteristics except the important structural components. It was used to help create a pocket for the implant. You can get more information on Alloderm here.) Anyway, my plastic surgeon (PS) removed the expander, replaced it with a silicone implant and she also did a little work to help move the “gals” a bit more toward the center instead of under my arms as they were between these two surgeries as I described previously. So, this time my sides are very tight from the internal stitches which are trying to maintain the pockets/implants where they should be. But really overall, I have not had very much pain overall and definitely no intense pain like last time. It has been a much easier surgery and recovery compared to the mastectomy.

Also, triumphantly, I had NO nausea this time around! Hooray! Some lovely ladies on BRCA Sisterhood on Facebook mentioned a nausea patch to me after I explained my terrible nausea following the mastectomy. I asked my PS and she ordered it during my preop appointment and I picked it up at the pharmacy. The patch was called a scopolamine transdermal patch that I placed behind my ear the morning of the surgery and wore for 72 hours. It was so wonderful to wake up and not feel like absolute crap! Supposedly my PS came and talked to me afterwards and I don’t remember that at all, even though my husband says I was talking, smiling and thanking people. :)

I am very thankful to my plastic surgeon and the anesthesiologist for their hard work. My PS did a wonderful job making my “foobs” look like natural breasts. I’m pretty sure if you didn’t know any better you would think they were natural and that’s not just with clothes on! However, if I’m being totally honest I am still trying to get used to them. I feel like they are smaller than my real breasts were and my PS must have felt so as well, because she said she would have liked to have put 1000cc implants in, however, silicone only goes up to 800cc. Oh well. I also sort of feel like they need to be over toward the middle a little bit more…you know how with natural breasts there is space between them, but then when you put them in a bra they push together a bit? Well, they probably look natural because of the space which is great, but they don’t really move...at least right now since I still have stitches and pain I haven’t exactly tried hard, but in any case I almost worry they look too far apart. Whatever. I’m sure it’s too soon to actually tell anything. I need to wait and see how they settle and what they look like in several months, so I guess I’m being too critical and picky, but that’s just kinda how I feel at the moment. Hope that’s not TMI, but just thought I’d share what I’m really feeling for those who may go through all of this at some point – trying to keep it as honest as I can!

Until next time, here’s to a quicker recovery, being healthy, and (tada!) silicone!! :)

Monday, August 2, 2010

Back on the Table

So, here it comes, the second big day. My exchange surgery is scheduled for Thursday August 5. To remind those of you unfamiliar with the process, this is the surgery where the plastic surgeon removes the expanders that are underneath my chest muscle and replaces them with the implants (silicone in my case). Some of the lovely ladies with BRCA Sisterhood on Facebook call it Operation Squishy Boobs. I love that! The expanders are very firm and are unmovable. They are not too tight or majorly uncomfortable right now for me because instead of sequential fills to slowly expand the expanders, my plastic surgeon added all 800cc right off the bat during the original surgery. So, I am fairly used to the extent to which my muscle is stretched. However, the silicone implants should feel more soft and pliable, hopefully a bit more natural. In addition, as I mentioned in my previous post right now my breasts are very uneven and under my underarms instead of towards the center of my chest as they should be. This is something else that the surgeon will take care of during the exchange surgery.

This surgery is going to be much less traumatic than the prophylactic double mastectomy with reconstruction surgery in April. For example, the surgery is going to be performed at the clinic closer to my house, as opposed to the larger clinic/hospital the initial surgery was done at. Also, the first surgery was about 6 hours long and this one is supposed to only be a couple of hours and then it is outpatient where I go home right after. I am sure I will still feel pretty beaten up, sore and tired, but nothing like how I felt after they took out all of my breast tissue from the bottom of my breasts to my collar bone. I will have lifting restrictions for 1-2 weeks, depending on how I am recovering. My plastic surgeon also told me it is a 50-50 chance of having drains, so I am keeping my fingers crossed that I get the 50% chance of NO drains! But I will deal with them of course if that’s what needs to happen. The drains, which I explained more here, are not the worst things ever, just a bit of a nuisance.

It is strange how fast this surgery snuck up on me. In some ways it felt like it was taking a long time to get here, but looking back the last 3+ months went by very fast! I was originally hoping to have the exchange surgery at the end of July, but then ended up having to wait for one part of the right side to finish healing. To explain, when I woke up from my original surgery I had a blue tattoo-looking area (if you put the tips of your thumb and forefinger together it was about the size of the space in between, just larger than a quarter). This was from the dye used to determine which sentinel lymph nodes to remove and it didn’t happen on my left side and I don’t think it is very common. My body did not take kindly to that dye and it stayed for weeks and then the top layer of skin finally started to peel, but then it turned into a thick scab. After a bit, the plastic surgeon removed the scab explaining that at a point it is doing more damage than good because water can get trapped underneath and bacteria start to grow. So, once she removed that scab I had a crater on my boob that was kinda gross and took forever to heal completely. Once it did heal about 2.5-3 weeks ago, my plastic surgeon felt comfortable with scheduling my exchange surgery. She wanted to give my skin a few weeks to be healed and give the scar a chance to shrink, etc. before she performed another surgery. Sorry if that was TMI, but I wanted to give an explanation for others who may find themselves in the same situation at some point.

So overall I am in good spirits. I am nervous, but less so than for the mastectomy. This time I already have a nausea patch that I asked my doctor to order since I had such a rough time with the anesthesia and medications last time…sensitive stomach! I am hoping I may actually be able to wake up from the anesthesia and feel well enough to even think about looking down at my chest as I have read about others doing! It is a relief to know that I am *hopefully* almost done with this portion of the prophylactic surgeries. If all goes well and I don’t need any revisions, I will be done with the breast portion and the ovaries will be next…when I’m 35.

I am very appreciative to all of my family and friends for all of their wonderful support throughout this BRCA experience. I have had such sensitive, kind responses to my decisions and I am so thankful for everyone. I am especially very grateful to my husband who has been truly amazing during, well, the entire time I’ve known him, which goes back to high school and being there for me during my Mom’s death. He is more than words can describe and I love him more deeply with each passing day!

Until next time, here’s to no more rocks on my chest, squishy boobs, and silicone!!! J

Thursday, July 15, 2010

Boobs, Boobs, The Magical...Fruit?

Awww Boobs! Everywhere I go I see boobs! Thanks to the wonderfully warm (hot!) summertime weather, everyone is wearing tank tops, sleeveless shirts, summer dresses, bathing suits and any and all cleavage-baring clothes available. Now, I wasn’t one who flaunted her bosom prior to surgery, but boy how jealous I am right now that I can’t even wear a t-shirt, let alone a tank top! My “lovely” (NOT!) interim boobs, as I’ve called them before, are not even. So much so, that I cannot even where a regular old t-shirt because it is so noticeable. Lefty was the “normal” well-behaved side right after surgery. Minimal bruising, decent placement…and now is making a run for the border, like it’s migrating season for the birds! Not to mention it’s trying to make a hard turn left, so the “headlight” could say hi to you if you were sitting on my left side! Then there’s rightie! Oh, rightie…well, first rightie was pretty much directly under my chin where it felt like I could have rested my chin on it. Then, there was the blue dye (from the sentinel node biopsy) about the size of a large quarter, in more of an oval shape, that tattooed my skin just to the right of the nipple. This “tattoo” decided to start peeling, then scabbed, then the plastic surgeon removed the scab which created a crater, which has since been taking it’s suh-weet time healing. Just today, the last little pin hole finally filled in (Yay!), it only took it… ummmm about 3 months! So now, rightie is pretty much healed and besides being a bit too far under my armpit still, is in a somewhat decent position on my chest. However, the two put together under a t-shirt look ridiculous!

Needless to say, I’m jealous! I’m jealous of small boobs, big boobs, perky boobs, saggy boobs, bouncy boobs. Pretty much, any boobs, but mine! As one of my friends has mentioned – I have boob brain! I am wearing clothes to camouflage my unevenness. A shirt under a button-up shirt, shirts with something distracting to the eye, shirts that have coverage “frill” around the cleavage area, etc, etc. I would love to just wear a regular t-shirt or tank top! And I know, I know. This is only temporary and my plastic surgeon will fix everything and make it all look “normal” during my exchange surgery. My husband is so sweet and keeps reminding me that it’s only temporary. Yeah, yeah. :) That doesn’t help me right now when I go to my closet and try to find one of the 4 shirts that actually help conceal my dysfunctional chest!

I know I do not have to live with my step-like chest for too much longer. It is just frustrating at times. It’s not like my natural breasts were perfect. They were fairly saggy after breast-feeding two babies and were actually a tiny bit uneven themselves. However, they could be placed in a bra and viola! They looked pretty great in a shirt – if I do say so myself. Of course, that could just be elaborate fake memories I am giving myself to feel better? These imposters under my chest muscle do not budge. I am not allowed to wear an underwire bra, but pretty certain it wouldn’t do the trick anyway. A sports bra can tug lefty up a tiny bit, but not enough to get away with wearing a t-shirt. I even feel very self-conscious in, ahem, intimate moments with my husband.

On the other hand, being perfectly honest, things are actually moving along nicely. With rightie finally healed, my plastic surgeon said we could start the ball rolling on scheduling the exchange surgery. She wants a few weeks to keep an eye on the new scar, see how it shrinks, etc. The temporary boobs finally have an end in sight! *Sigh of relief!* My husband helps me remember how wonderful my plastic surgeon is and how I need to trust that she will do her job and make everything look great. I know, I am trying! That really is supposed to be her job, right? She has done a lot of breast reconstructions, following mastectomies. She doesn’t seem in the least bit concerned about my unevenness now and says she will fix all of that during the exchange. So, okay - I need to trust in her and be patient. I need to suck it up and deal with what I’ve got. It definitely could be a ton worse and I am so very lucky at how well things have gone so far, considering. I’ll just have to admire others seemingly perfect racks and believe that I will be back to looking “normal” soon, with a shirt on anyway.

Until next time, here’s to boobs, boobs and more boobs…oops I mean silicone! :)

Tuesday, June 22, 2010

A Chance to Give Back!


There have been several organizations that have been irreplaceable during my BRCA journey, including the BRCA Sisterhood (on Facebook), the Young Breast Cancer Survivor Group at my hospital and the FORCE (Facing Our Risk of Cancer Empowered) organization (http://www.facingourrisk.org/). FORCE is an organization that has been very helpful to me and my family during our BRCA journey. The FORCE community gives people a place to share and get support and information on hereditary breast and ovarian cancer. It is a community where others understand what you or your loved ones are going through. I have found it extremely helpful to learn more about what other women have been through and found it useful in preparing myself prior to my surgery. The message boards are a safe place to ask questions, talk about your fears and concerns and talk to women who have been through similar experiences. My city even has a FORCE support group that I have attended. They also have a yearly conference that involves experts in hereditary cancers, physicians, surgeons, and information on understanding your risks, surveillance, surgery, healthy living, support groups and so much more. It is a wonderful support base.


Okay, so this is really unlike me to ask others for something...but I have found the FORCE organization to be very helpful during my quest for answers and support during my BRCA journey. If they were to place high enough in the Chase Community Giving Campaign it would be very beneficial to many people. The FORCE website was one of the first places I went when I found out about my BRCA1+ status because my sister had already been going there for a few years. If you have a free minute, your vote would count and could help numerous people. Below is some information explaining the Chase Community Giving Campaign, more information about FORCE and how you could vote to help a wonderful organization. Voting really is quick and easy! Thank you so much for your support!


What is Chase Community Giving?

In a nutshell, Chase has a campaign on Facebook and is going to be giving away a total of $5 million dollars to be split between 200 charities. The charity with the most votes will receive $250K, 4 runner-ups will receive $100K, and 195 charities will receive $20K.


What is FORCE?

FORCE is the only national nonprofit organization dedicated to serving the needs of and improving the lives of individuals and families affected by hereditary breast and ovarian cancer (such as BRCA mutants like me!). They provide lifesaving information on the latest medical treatment and risk management, resources, and awareness.


Voting on Facebook starts June 15, 2010 and 200 winning charities will be announced on July 13, 2010.



What would FORCE do with the money if they won?

For starters:
$1,000 delivers the latest in BRCA research and information to 500 families.
$500 gives 60,000 visitors access to their website for one month.
$300 provides a scholarship to FORCE’s annual conference to one person that could not otherwise attend.

$200 provides life-saving information to 100 people through their newsletter.
$100 provides phone-based support and resources via the Helpline for one month.
$50 provides a package of informational brochures to doctor’s offices and hospitals.

Just think – if $2250 can do all of that – how much good could be done even if we only place among the bottom 195, and win the lowest amount of $20,000! That’s a whole lot of help, to a whole lot of people!


FORCE’s MISSION

“To improve the lives of individuals and families affected by hereditary breast and ovarian cancer.”

To this end, FORCE has eight mission objectives:

• To provide women with resources to determine whether they are at high risk for breast and ovarian cancer due to genetic predisposition, family history, or other factors.
• To provide information about options for managing and living with these risk factors.
• To provide support for women as they pursue these options.
• To provide support for families facing these risks.
• To raise awareness of hereditary breast and ovarian cancer.
• To represent the concerns and interests of our high-risk constituency to the cancer advocacy community, the scientific and medical community, the legislative community, and the general public.
• To promote research specific to hereditary cancer.
• To reduce disparities among under-served populations by promoting access to information, resources and clinical trials specific to hereditary breast and ovarian cancer.


Why is all of this important? As someone who has a BRCA genetic mutation, having an organization like FORCE on my side is invaluable. Without knowledge of what these genetic mutations mean, people can and do die from hereditary breast and ovarian cancer. Spreading information saves lives, and provides much needed peace of mind, education, and emotional support for those of us afflicted with this mutation.


If you are on Facebook then it’s very simple to vote. First click here:

The next step is to join the movement by scrolling down just a little bit on the page & clicking the ‘Like’ button.

Next step: Click the big green ‘Search’ button and copy this text: Facing Our Risk of Cancer Empowered and paste it in the box that says ‘Charity Name.’

Click the big blue ‘Search’ button to the right of that.

After you click that, you’ll see Facing Our Risk of Cancer Empowered in blue lettering. Click it.

Scroll down & check the box that says: “Please display my name and profile picture below so this charity knows it can contact me to get more involved.”

Click submit. A ‘Request for Permission’ box will pop up. Click ‘Allow’.

Vote – and share with your friends, and ask them to share with their friends, and so on.


I really appreciate your consideration in voting for FORCE. Although you are only able to vote for each organization one time, you have 20 votes total, so you can look at helping other organizations close to your heart as well! Thank you very much to anyone who is able to vote! I really appreciate your support! :)

Until next time, here’s to FORCE, Chase Community Giving and silicone!

Thursday, June 17, 2010

One Sweet Day

The other day I was driving alone in the car (believe me that isn’t common these days!) and a song came on the radio, “One Sweet Day” sung by Mariah Carey. If you’re my husband you’ll probably roll your eyes and make a fake gagging sound even just having to think about that song. But for a few reasons this song has some sentimental and emotional ties for me that pull my thoughts back to a different time in my life. To set the stage, during the last year of my Mom’s life, my Dad traveled a lot for work. He wasn’t usually gone for too long, but when he went out of town it was just me and my Mom. After her work and my school (I was in my senior year of high school) she would come up with a reason we needed to go to the mall and then we would eat dinner at Ruby Tuesday (we didn’t have lots of options in our small town :), plus, she loved getting the salad bar and baked potato or soup!). One of the times we were there for dinner, “One Sweet Day” came on in the restaurant. It wasn’t like it was playing all that loud, but it was enough for me to hear all of the words to the song and for some reason my head starting thinking not happy thoughts. Some parts of the song that hit me were: “had I imagined living without your smile…and I know you’re shining down on me from heaven…and I know some day that we will be together, one sweet day…” These pieces of the song made me start thinking “What if?” What if I actually lose Mom? I honestly can’t imagine living without her smile and hugs. Someday soon will I have to think about her looking down on me from heaven and look forward to the day I get to be with her again? I can’t live without her – what would I do without her? I could already feel an ache in my heart just letting these thoughts breach my conscious.

Now although I was very responsible and acted fairly grown up for my age (remember I had been seeing my Mom go through hell, be sick, taken her to chemos, etc…since I was 14) I was not in the grown up stage of mind thinking that it was a possibility that my Mom could actually die. I was, in fact, very na├»ve, super optimistic and always looking through rose colored glasses so to speak. I was this way until right before she died. As a perfect example: I wasn’t the type to talk back to my Dad and during those last few days of my Mom’s life, I remember him nicely trying to tell me I might want to start preparing myself. And I raised my voice a bit at him and said “No, Dad, no. Mom is not going to die.” I was in denial. I was only 18 years old and how else could I think? So these unhappy thoughts crossing my mind were unusual and scary and made me feel like a bad person for even letting them slither their darkness through my mind.

Several months after letting that song leave a permanent wound in my heart, those dark thoughts became reality. Ever since, when I hear “One Sweet Day” I tear up and cry, sometimes even bawl if I’m alone. It reminds me of how much I truly miss Mom and how I was eating dinner with her when I heard this song and had thoughts of “what if”. I think about how much I wish I could see her smile again (in real life, not just a picture) and how I hope she is proud of me and is the one in heaven with the biggest smile. [She told me at my high school graduation that she would be easy to spot because she would be the one with the biggest smile. :)] However, the other day in the car when the song came on…I didn’t cry. I didn’t even tear up or feel those awful feelings of loneliness and aches in my heart. When I realized what was, or I guess wasn’t happening, I felt a sense of peace. It was kind of surreal. I’m not saying that I expect to never again cry during this song. I’m just saying that it was comforting and maybe the wound in my heart has actually healed itself a tiny bit knowing I am doing everything in my power to avoid the same demise as my Mother. For me, it was a triumph, no matter how trivial.

Until next time, here’s to finding peace, triumphs and silicone.

Wednesday, May 26, 2010

One Foot on the Other Side

Wow, sorry I’ve been MIA lately. It’s been weird since my surgery…my brain still feels a bit muddy. I don’t feel like I am remembering things all that great – although I didn’t forget my son’s birthday last weekend so that’s a start. I think my brain gets messed up easily with hormone changes. During and since my pregnancies I have noticed an inability to remember things as easily as I used to. Since my surgery I have felt a bit like that. I bought a new book prior to my surgery figuring I would have lots of time to read, except I haven’t really felt like reading and have only read about 80 pages of my book. It’s not something I was expecting to affect me following surgery. Hopefully it gets better and goes away soon. Needless to say, I haven’t exactly been able to wrap my brain around what to write about in my next blog. So, I decided to write about some of the issues that have been on my mind post surgery.

So technically I have one foot on the other side. I have my initial surgery behind me, but still have my exchange surgery yet to come. As a reminder, that’s the surgery that involves going back through the original incision site, removing my expanders and replacing them with silicone implants. It won’t be for another couple months still. One of the strangest things is to have the mastectomy finished. What I mean by that is that this was a long time coming. I found out about my BRCA1 mutation in April 2008 and from that moment on, I pretty much knew at some point I would be having a mastectomy. But I gave myself time. Time to think, ponder, research, discuss, soul search…you name it. So it’s different to be on the other side of things. Now instead of - I’m going to have a prophylactic bilateral mastectomy because my breast cancer risk is almost 90%; it’s, I had a prophylactic bilateral mastectomy to reduce my risk of breast cancer to below normal population. “I’ve had a mastectomy.” Those words are still a bit awkward coming off my tongue. Not that I have any regrets, just that it’s almost surreal that all of this has already taken place. Prior to surgery everything feels like a huge waiting game. Waiting to see if you are positive for a mutation, waiting to discuss options with surgeons, scheduling appointment after appointment (whether for information, check-ups or preventative screenings), making well-informed thought out decisions, scheduling the surgery and then w a i t i n g for the surgery date to finally come. Now that the mastectomy is behind me, I can move forward with my life without constantly waiting for that breast cancer diagnosis.

It’s a very strange feeling physically, as well. I told my husband about two weeks post-op that it would be nice when I didn’t always “feel” my boobs. The expanders are behind my pectoral muscle stretching it in order to create a pocket for an implant to eventually sit. So the key word here is stretching. My PS apparently filled my expanders to the whopping 800cc that I was planning on being filled up to when all of my fills were complete. Normally, the expander is filled a bit during the initial surgery (my PS had originally said maybe she would be able to get 400cc or so in them at first) and then slowly filled every few weeks with usually 50-100cc each time. I guess since I did a skin-nipple-sparing surgery she wanted to fill out as much as she thought my muscle could take. Possibly in order to maintain the skin and not have it shrink and cause wrinkling and dimpling. Whatever the thought process, I am filled. There is a constant tightness and pulling on my chest, so I am always aware it’s there. It’s not something I could have imagined prior to the surgery. The expanders are also very hard themselves, so underneath a muscle and stretching it to its max makes the outer “interim” boobs feel solid, not soft and squishy like natural breasts. And it’s just a strange feeling. As my sweet husband keeps reminding me – it’s only temporary - at least the strange hardness, unevenness and outer “damage” that should be fixed by or healed before the exchange surgery.

I knew heading into this whole experience there would be unexpected outcomes, speed bumps, changes of plans and emotional and physical changes. However, everything I have to go through now is so worth what I am gaining – My LIFE. I can look toward the future and not feel like I am constantly waiting for a breast cancer diagnosis. I can know that I did everything in my power to protect myself from having to battle this terrible disease as so many brave, courageous women do. I constantly repeat back to myself the words my husband said to me right after my surgery, “You just saved your life.” He’s amazing and I love him so deeply for being my soul mate and knowing exactly how to help me through anything.

Here’s to a clear head, looking towards the future and silicone!

Tuesday, May 4, 2010

Aaaahhhhh Freedom

So today I am 11 days post-op. It is amazing the difference from last week to today. I am really only feeling tightness/stretching from the expanders and some pulling where the stitches are. I have some pain now and then in and around my breasts, but nothing like that first week. I know I said this on my last post, but it is amazing how the body heals itself!

I had my post-op appointment today with my plastic surgeon. It was a great appointment for many reasons. First, I got my drains removed! For those who want to know because they are trying to make their own surgery decisions or learn more about this surgery I will give a little detail. Sorry if it’s TMI for others who are supporting me by reading my blog – just want to give people as much info as possible if they are trying to make their own decisions! So, drains are placed during the surgery to remove excess blood, fluid etc from the surgical site and I believe I remember my surgeon saying it helps speed up the recovery process. Thin tubes are placed in the surgical site before they close up and the tubes exit the body through a small incision that has one or two sutures to hold the tube in place. The ends of the tubes have bulbs attached that create suction to withdraw the fluids. The drains have to be emptied about every 12 hours [thanks to hubby :) , but can be done by yourself ] and in order to be removed the amount of fluid draining has to be below a certain volume within 24 hours. The drains are not terrible and they’re not painful, just kind of annoying. It is a bit hard to find a place to “hide” them. I just had them pinned to the upper part of my surgical vest, but there are special bras made with places to hold them. I found myself a bit worried I would accidentally yank on the tube and cause a problem, but now that they were removed I see that it would have taken a pretty big tug to probably even budge the tube without having the sutures cut. So that’s a positive! It didn’t hurt to have them removed, but was just uncomfortable for the few seconds the plastic surgeon pulled them out after cutting the sutures. Overall, I am relieved to have them out and not have any other foreign objects protruding from my body. Now, no more IV’s, no weird tubes – well at least until my exchange surgery!

In addition, I received a phone call from my breast surgeon’s office. All of my pathology came back normal!! That was a huge relief because if I’m being totally honest, there was a part of me that truly thought they might actually find something, even if it was just really early stages, like precancerous. I know that’s not a good way to think, but obviously I didn’t think everything was always going to be hunky-dory or I wouldn’t have had the surgery. I didn’t think I already had cancer, but I did wonder about tissues beginning to show signs of turning on me. I am still 7 years away from when my mom found her breast cancer though, so I made my pre-emptive strike early enough. It was a wonderful feeling to know the results were good. That also meant there were no suspicious findings of the tissue that was directly under the nipples. The tissue removed from underneath the nipples was specially tagged for pathology to look at closely. If something suspicious was found then I would need to remove them too.

Additionally, my husband and I had about a thousand questions for the plastic surgeon today. She answered all of our questions and didn’t make us feel rushed or like we were being stupid. I really love my surgeons – they are both such wonderful women and so caring. As I mentioned in my last post, they really try to prepare you by telling you that your chest is going to look and feel like it got run over by a truck. They aren’t kidding. My skin ranged from all colors from yellow, gray, blue, purple, dark, dark purple and all colors in between! But each day it gets less and less. Also, I have a dark blue spot on my skin on the right side which was caused from dye they use to find and remove sentinel lymph nodes. Just to inform others, my doctor told me that it was nothing to worry about, but it does take a long time for the dye to fade.

Overall, I am so thankful to have my drains out and to be feeling better each day. I am regaining motion of my arms and shoulders and able to do more things for myself. That has been difficult to not be able to do things that are taken for granted when I am completely healthy, like brush and wash my own hair, or reach up for something on a shelf or even opening a car door (their heavier then you think!). But every day is an improvement from the next and I am so thankful I was healthy before the surgery so I am able to recover as quickly as I am. It’s a good day!

Until next time, here’s to no drains, washing your own hair and silicone!

Saturday, May 1, 2010

Post-Op Update

So, I know it’s been awhile since I’ve posted…since the night before my surgery. That night we didn’t get much sleep, but mostly because we chatted with my mother-in-law and sister-in-law and finished getting our stuff packed for the hospital. My surgery was scheduled for 7:30 am on Friday morning and we were supposed to check in at 5:30 am. I’m not exactly sure why that early because we had already taken care of all the necessary hospital paperwork, payments, etc. We got there right on time, got called back to a small room where we were asked more of the same questions (allergies, what I was there for, etc.). They had me change into a hospital gown, robe, tight stockings to help with circulation and non-slip socks. Then we waited and waited. Luckily I had my husband, his mom, my dad and one of my sisters to talk with and distract because I was just ready to start and it seemed to take forever for 7:30 to come around.

My breast surgeon came to say hi and made a mark or two with a purple marker close to my collar bone. Then the anesthesiologist came and after reading that I throw-up if given morphine (side note: they gave me morphine to help “move along” my labor with my first son…it didn’t work) and get nauseous if I take advil on an empty stomach, he decided to give me some pill to take prior to going under to help my tummy (it didn’t help, but more about that in a minute). Then my plastic surgeon came in and marked me up all over with a purple marker. She gave me a hug and then it was time. A nurse came to my room and walked me straight to the operating room. That was strange to me…I always figured they wheeled you in on a bed to the operating room – maybe just in the movies! It was super cold in there and the anesthesiologist made jokes about how it was too cold for him. They quickly covered me with warm blankets, wrapped things around the awesome stockings for circulation (to avoid clots) and started an IV. The nurses and anesthesiologist were so kind. The anesthesiologist kept calling me kiddo and explained everything as he went. He gave me something in my IV and said not to be alarmed if I felt a little dizzy. Promptly following that I felt dizzy, like the room was spinning. I remember saying something about how quick that started, then they put a mask over my mouth and nose, the nurses were both talking with me and holding my hands and that’s all I remember.

About 6 hours later my surgery was complete, unfortunately I woke up to terrible nausea. So bad in fact, it took them about 3 hours to get me out of the recovery room into my hospital room. They told my husband they gave me every anti-nausea medication possible. I just remember filling sooooooo sick, praying I wouldn’t throw up, and having the hardest time trying to keep my eyes open. The rest of that night did not go well unfortunately. As I said earlier, my tummy can’t handle morphine, so they were giving me something called dilaudid that just made me nauseous every time they pumped it into my IV. So not only did it make me feel terrible, it didn’t reduce my pain in the least. I don’t know if most women are in pain the first day or so or if it was just because I couldn’t take morphine and the other medication wasn’t working, but that first night was rough for me. If I am being completely honest, I did think “Why did I do this right now? I was healthy and in no pain and now I am having the most pain I’ve ever had and nothing is even diminishing my pain.” I am not saying this to discourage anybody. I just want to be perfectly honest. To my HUGE relief, when my plastic surgeon came in the next morning she suggested we try Toradal and Vicodin. Wow - something that reduced my pain and didn’t upset my stupid sensitive stomach!! Yay! It was such a sigh of relief to have the pain actually lessen. My breast and plastic surgeon said everything went great. My plastic surgeon said something about all of my bruising that made my husband and I laugh, “These are colors only a plastic surgeon would love.” She’s probably right, but thanks to all the women that shared their experiences before my surgery and my surgeons who were very honest beforehand, I was expecting my breasts to look like they were run over by a truck and they do! But the bright side is they look better and better every day.

It’s been 8 days since my surgery and I am doing great now besides feeling ridiculously tired most of the time. Today my pain is so little I have not taken a single Vicodin and have only taken Ibuprofen. It’s amazing what a week can do! The body is an amazing thing – what it can be put through and how it can heal itself…I’m so thankful to be healthy! My family and friends have been amazing through this. My mother-in-law is staying with us. She has been helping with the boys, cooking, cleaning, and anything I need. I honestly cannot thank her enough or show her how much we appreciate her help. My dad is coming to help if I still need it when she goes back home. My father-in-law just drove all the way here to help too and all of my sisters have been so caring and sweet! My sweet husband stayed with me every night in the hospital (I was released Monday) and has helped me get showers, wash my hair, and tend to my drains. Emotionally and mentally he has been my rock. The day after my first night when I had my “why?” thoughts I told my husband. His response? “Honey, you just did the bravest thing I have ever seen. You just saved your own life! ” He hasn’t even shuddered once when he’s seen the train wreck on my chest. As I wrote in my previous post – I am the luckiest – he is amazingly wonderful! I love him, love him!! :)

I don’t have any regrets and I am looking forward to life on the other side of surgery where I don’t have to worry about breast cancer. So far besides one tough night, things are looking brighter each day and I know I made the right decision.

Until next time, here’s to great surgeons, medication that works, and silicone!

Thursday, April 22, 2010

Acts of Kindness

People in general are so kind and caring. It is amazing how understanding people have been when they learn about my decision to be proactive against my BRCA positive status. I even mean acquaintances that don’t really know me. I really expected to have at least a few reactions that I have read about other women receiving. Things like them saying, “But you don’t even have cancer,” or looking at me like I have lost my mind. But what has actually happened is every single person I have told has told me that they understand my decision and of course I have to do the surgery. I was honestly worried before I would discuss my surgery decision with others (besides my family). Now don’t get me wrong, I didn’t go around announcing this to anyone and everyone. But I informed my son’s teacher so she would have a head’s up in case he was acting a bit emotional and to explain why I would not be picking him up and dropping him off for awhile like I always do. She was so sweet and wonderful. I am also thankful for how caring the ladies were who watch my youngest son when we go to the gym. My gym also has drop-off hours, and I had to take advantage of those so many times for all of my appointments during my decision process and surgery preparations. Those two women never once made me feel bad for having to drop my son off for an hour here, two hours there. And they always ask how the appointments go and how I am feeling. People are so kind.

There is a support group at my hospital for young breast cancer survivors. My genetic counselor suggested I attend one of the meetings and discuss my situation with the brave women attending. I went to one of the meetings when I was first making all of my decisions and arrangements. I also attended last night. These women are SO courageous and caring. First of all, I felt unworthy to be with them. I have never had to go through the pure hell all of them have. I did not want any of them to think, “What does she have to complain about? She doesn’t have cancer. She doesn’t know what we are going through.” However, my fear and worries were soooo unjustified. Many of the women shared their stories and feelings before it was my turn. And as I described my BRCA status, my family history and what I had decided to do – they were all nodding and listening intently. During my sharing, I pointed out that I knew I had it nowhere near as difficult as they had it and that I really appreciated them allowing me to listen and share. One of the woman spoke up and told me that she thought I had a more difficult decision to make because I didn’t already have cancer (and may not actually ever get it), but that for them they weren’t really given that opportunity. There were nods from the other women. I was stunned, because to me they are the brave, strong ones. The women gave me hugs after the meeting and told me I would be in their thoughts and prayers. I am so appreciative to them for sharing their experiences with me and listening and supporting me. These women are amazing and I am in total awe of their strength and love. People are so kind.

My family and friends have been so wonderful! I have had nothing but support from all of them. Friends have been so sweet listening and advising and sending their love. My sisters [all of them, I include my husbands :) ] have been very understanding and supportive. They all make sure I am doing ok and that I know how much they love me. My dad has been there for me since the day I found out I was BRCA1+. He knows me well enough, that he said, “So, it’s actually more a question of when, not if, you’re going to have the surgery, huh?” He was right on the mark. My husband’s parents have been just as great. In fact, my mother-in law is coming today to spend the next two weeks helping with the boys, helping around the house and helping me heal. She has been so wonderful. After I first told her my decision, she agreed it was the best decision for me and told me if I was ever having doubts or any fears to just give her a call and she would give me a pep talk. My strongest supporter is my husband. He is truly amazing! Honestly, I talk a little too much normally and he has had to listen and listen and listen these past months about surgery this and breast that and on and on. My fears, worries, concerns, questions, etc…he has worked through all of them with me. One day I apologized for BRCA babbling again, and he told me that it does not bother him. He said he knows that the surgery is all consuming right now and I should discuss anything with him because that is what he was for. I am sure everyone thinks their spouse is the best, but my husband really is! He is the most caring, loving, thoughtful, supportive, wonderful man. I can’t even begin to describe how much he means to me. We have been together for 14 years this fall and I can’t imagine my life without him. He is my best friend, my confidant, my love. He knows me better than anyone, sometimes better than I know myself! :) I love him more everyday! I am truly the luckiest woman in the world! Thank you everyone, for everything!

Tomorrow morning is the PBM surgery. It is the end of my natural breasts, the beginning of my new “foobs”, as many call them. The end of my waiting, the beginning of moving forward. It is the end of my fear and the beginning of my relief.

Until next time, when I am on the other side of my surgery, here’s to kindness, love and silicone.

Friday, April 16, 2010

Letters to the Boys

Well, I’m not meaning to post another sad blog, but there are some things I have been thinking about in order to prepare for surgery that aren’t exactly “happy thoughts”. Let me preface this by saying that I’m honestly not thinking the worst. However, I am also trying to make sure I have all of my bases covered. Hang in there with me; I promise the post finishes on a strong note! First, my husband and I have been thinking about paperwork stuff that needs to be taken care of prior to my surgery. Things such as, making sure we have enough life insurance and preparing a will. We haven’t started the will yet…actually it’s really something we should already have taken care of, but it’s not really one of those “fun” things to think about. Discussing crappy things like if both my husband and I were to die what would happen to our boys? Or if something were to happen during surgery that left me on life support, or brain dead, or… crappy, crappy, crappy…

Although the surgery preparation has been going on for months, it quickly became even more “real” a few weeks ago, with a conversation between my husband and I. I, of course, waited for the most appropriate time and place to share some of my thoughts with him…not. We were in a restaurant eating dinner with the boys, and when I was sure the boys weren’t paying attention to us, I asked him if he thought I should write letters to the boys, just in case something were to happen during surgery. I know, that seems like a dumb time to ask, but when is it ever a “good” time to ask a sad question like that? So I figured at least I would get the question out and off of my chest. Needless to say we both got too choked up to actually continue the conversation in the middle of the restaurant. It surprised me how asking the question out loud was more difficult than I expected. I had considered writing them letters for quite a while, but actually asking the question triggered more emotion than I could have ever anticipated.

Since then I have really been putting off writing the letters. I couldn’t even think of where to start. My guys are so little that I wasn’t sure what to write about. They are only 3 and 5 (well 6 next month) and I haven’t had the chance to see them grow up into young men or have tons of accomplishments that they would actually remember. If something were to happen now, would they even remember me? My oldest would have a few memories and my 3 year old probably only a couple. I mean when you think back on your life, how many memories do you actually have from when you were 3? Or 5? I don’t have enough memories from when I was those ages to feel satisfied with what the boys would, or rather wouldn’t, remember about me. But in reality this isn’t for me. It is for my sweet, silly boys. I wrote the letters yesterday and it was not as bad as I anticipated it to be. I wrote to them separately and I wrote about all of the wonderful traits they already have. For instance, how my older son is so sweet and caring towards others. The other day at the park he saw a little girl crying and asked her what was wrong, but she didn’t answer him. He didn’t know what to do so he told me a little girl was crying over by the climbing wall and he didn’t know what was wrong with her. I walked over there with him and we made sure she was ok and after that he asked her if she would like to play soccer with him and his new soccer ball. He is so thoughtful. My younger son is just so silly and sweet. First, he always picks me flowers. If he sees a flower, usually the dandelions that grow in our grass, he darts for it, picks it and says, “Pretty flower for Mommy!” He also loves being silly. If he does something that makes my husband and I crack-up, he just keeps at it to make us laugh even harder and longer! The other thing about both of them is that they are both soooo much like my husband and I in the sense of humor department. My husband and I are both VERY sarcastic and crack jokes to each other and the boys all of the time. We all like to act silly and make each other laugh! Those are such wonderful times when we are all laughing so hard! I SO LOVE my boys (all 3, my husband too!)!

So instead of making the letters sad, I made them about the boys and how truly amazing they are already. I told them stories like the ones mentioned above and others to let them see themselves through my eyes. Don’t get me wrong, I am not one of those moms who thinks her boys do no wrong and everything is always hunky-dory. But now is not the time to focus on how hard and frustrating being a mom can be at times. I am actually very proud of myself for finally writing the letters and for giving the boys a glimpse of themselves through their mother’s eyes at these wonderful ages. That is, of course, only if the letters are even needed. As I said earlier, that is not something I am really considering. If I thought my risk of dying from this surgery was great I would never even consider it. I mean, duh! I am doing this to save my life and spend a long and healthy life with my husband and boys. I WILL live to be over 50 years old, unlike my mother, my grandmother and my great-grandmother! So even though some tough things had to be thought about and talked through recently, in the end this is a positive decision for myself and my family.

My surgery is a week from today and this time next week I will be in my hospital room finally done (well more like started! It’s still a long process, but you get the point). I am still nervous about the surgery, how I will handle the pain, being able to let everyone else do all the things I usually take care of, what the results will be like, etc, etc. But I am ready.

Until next time, here’s to memories, silliness and silicone!

Friday, April 9, 2010

What If...

In college I took a poetry class. I’m not really a poet or a great writer, but as I wrote for this class, most of the poems developed from my intense grief from losing my mother. When I took this class it had been 2 ½ years since her death, but I had not really had the time to mourn. She died about 2 weeks before I moved away to start college. I was only 18 and had been in denial before her death because she was my mother and mothers aren’t supposed to leave you when you are only 18, right? To make you feel better people always say, “The pain will lessen over time.” However, that is and it isn’t true. Some days I’m ok and some days I tear up over the littlest thing that reminds me of her. Some days I can talk to someone about her death without a hitch and others I get choked up before I can get a few words out. So, I would be lying if I said that I have now, almost 12 years later, completely mourned my mother’s death because there are pieces of me that are forever broken. I wrote the following poem in that class. It mirrors what my mom went through, but is written as if it’s me going through it.

What if

What if my normal cells begin over replicating
by the millions, deviously devouring

each organ, each tissue, each healthy cell,
until I am no longer human being
but a sculpted skin mold oozing

with foreign, yet not so foreign killer cells,
stretching their growing, grasping claws of death
into each and every crevice of my body,

snidely snickering, intruding my lungs –
continuously producing, incapacitating my lungs,

until the machine helps me breath;
the machine, which supports me,
my limp legs, too weak to stabilize my measly

100 pound body, once displaying rosy cheeks
now sunken back like my chocolate brown eyes,
which are pressed into my face like two caves resting in my skull –

entire body diminishing
overflowing with disease –
nausea, vomiting, aching body,

bald shiny head –

I want to be normal again.

That last line is something my mom actually said to me, several months before her death, after I brought her home from one of her chemos. She felt like no one understood what she was going through, except for her sister who had already lost her battle to ovarian cancer. She felt like she couldn’t talk to anyone. I told her she could talk to me, but she was Mom and wouldn’t burden me with her pain. She just wanted to be normal again and not have to be sick all of the time. It breaks my heart to think that she felt so alone. But, although I am not going through anything near what she went through, in a way I understand her feelings. I have a wonderful husband who I can talk to (poor thing has to listen way too much :) ) and very supportive family, friends and the BRCA community. However, it still feels like sharing too much and talking about it too much is a burden on others. I guess in a way that’s why I didn’t argue too much when my husband and sister suggested a blog. Whether anyone reads or not, or even understands, at least I can express some of my feelings by writing. So, I am sorry for being a “Debbie Downer” today - just feeling a bit blue. On the bright side, I am being proactive against breast and ovarian cancers so I can be normal, whatever that may be.

Until next time, here’s to poetry, “normalcy” and silicone.

Tuesday, April 6, 2010

Do Your Boobs Hang Low?

“Okay, let’s have a look,” the plastic surgeon says as she opens my robe. She grabs her tape measure and goes to town, taking all sorts of measurements. Determining the distances from my collar bone to the nipple and underneath of each breast, then across horizontally between the pair, just to mention a few. On one of the visits I remember smiling over at my husband afterwards and saying proudly, “My measurements were almost exactly the same for each side! At least they sag symmetrically!” My husband later told me that sitting there watching someone take measurements of my chest was one of the weirdest parts of the plastic surgeon ordeal. I agree, however, I also found it unnerving to be naked from the waist up and have to turn around and have the doctor analyze my chest, back and stomach to determine what type of reconstruction my body would be suitable for. For example, if I had decided to perform a surgery that entailed using my own fat from my stomach to form new breasts, I was told the newly constructed breasts would be smaller than what I am at now. Huh, I thought looking down at my belly…there seems to be more than enough fat in there to me. Consequently, my husband informed the doctor she was more than welcome to use some of his! How sweet! Ha! :)

A reconstruction decision provides a variety of options. I am going to do reconstruction utilizing expanders and implants, but as I also briefly mentioned above you can choose to reconstruct the breast from your own fat. Before reconstruction, a mastectomy is performed. This involves removal of the breast tissue which goes all the way up to the collarbone and over to the underarms. This is an extremely time consuming surgery because great care needs to be taken to remove as much of the breast tissue as possible. In addition to the breast tissue removal, you also must consider skin- and nipple-sparing surgeries. These involve keeping your chest skin and/or nipples intact, or conversely, full nipple reconstruction. Following mastectomy, if implant reconstruction is performed, a tissue expander will be placed under the chest muscle in order to slowly stretch it to make room for an implant. Saline is added to the expander every 1-2 weeks until it reaches the desired volume. A second surgery is needed, known as an exchange surgery, to replace the expander with either saline or silicone implants. This whole process lasts several months. Some of the other choices for surgery are known as flap surgeries. These utilize your own tissue from your tummy, back, thigh or buttocks to recreate the breast. These surgeries create very natural feeling breasts since it is your own fat/tissue, however the recovery is much longer than recovery from implant reconstruction because other parts of your body are involved.

One of the most important things is that you are fully confident and comfortable with your doctors. My husband and I met with three different plastic surgeons in order to make sure we knew all of our options and received several opinions. Dr. A is wonderful. She is great at answering our endless questions and describing specific aspects of the procedures.

If I’m being totally honest one of the comments that gets frustrating to hear is, “At least you’ll have perky boobs for the rest of your life!” I know it’s likely just a knee-jerk, reactive comment, and that people are just trying to be nice and look on the bright side, but in reality I would prefer to keep my own natural breasts. This is not a decision I am taking lightly or that I am excited about just because my chest may not sag (well sag more than it already does) in the years to come. I may joke about silicone or speak lightly of my gravity driven chest, but mostly it’s a defense mechanism to get through all of this. If I really felt I had a choice, I would not choose to cut off my natural boobs even if they’re trying really hard to reach the ground. See, there I go again! But, my boobs are plotting against me. My pre-emptive strike against them is less than three weeks away bringing me much closer to relief and freedom of fear.

By the way, I found The Breast Reconstruction Guidebook by Kathy Steligo one of many helpful sources of information.

Until next time, here’s to plastic surgeons, expanders and silicone!

Wednesday, March 31, 2010

To Cut or Not to Cut?

So, why have I chosen the surgery route to manage my BRCA status? I know that many people may think “What?! Are you crazy? You are going to remove perfectly healthy breasts?” And to be perfectly honest that thought crossed my mind before I knew I was BRCA1+. If you don’t have cancer, why would you do something so extreme? Well, there are so many emotions involved in a decision like this one. First, and a reason that has a HUGE impact, is my mom. She had breast cancer in her late 30’s and ovarian cancer at 45. She fought ovarian cancer for 4 ½ years by trying numerous types of chemos, going through multiple surgeries and even trying a bone marrow transplant. But even though it was caught “early” the ovarian cancer eventually took over. Conversely, she was a breast cancer survivor. She had a lumpectomy followed by radiation. So, one might think, okay, so your mom beat her breast cancer why are you worried about that? What about your ovaries? Well, those suckers are coming out as soon as my doctors feel comfortable about taking them out and not causing other problems due to the drastic reduction of hormones, etc. But that will be another topic down the road.

As for the breast cancer, yes, my mother found hers early. However, I have no way to know that I would be fortunate enough to not only find the breast cancer in its early stages, but also have it be a beatable form of breast cancer. Not to mention, if I get breast cancer I will want my breasts removed so I don’t have that constant threat of a reoccurrence. By then I will always have to worry and wonder if they did indeed remove all of the cancerous tissue. Are there some rogue cancer cells that sloughed off into my body as the surgery was being performed? Then of course, I would most likely need chemo and/or radiation on top of the surgery. Sounds like a blast, right? No, not to me. And this may seem like the glass half empty approach, but in general, I’m a pretty positive, optimistic person. This is me being proactive as opposed to reactive. I like being prepared. And knowing that my lifetime risk of developing breast cancer is about 87% I have chosen to reduce my risk to less than that of the normal population, which is about 12%. A wonderful woman who is also in my situation, gave me an example that I think is helpful when trying to understand the percentages. If you are about to board a plane and someone tells you that the plane has up to an 87% chance of crashing-it might not crash at all- but 87% chance it will. Are you going to board that plane?

Now of course I know I could be in that 13% that doesn’t get cancer at all…but I am just not willing to take that risk. I know I could hang on to “the girls” a little longer and still probably not have any problems with breast cancer, but right now is as good a time as any to kick this underlying stress and anxiety. I know I said I was a pretty positive person, but when it comes to cancer, not so much. I worry that I must be missing something when I am doing self-exams. Or, for example, following the few scares during preventative screening mammograms and MRI’s, I worried about if they were sure everything was really was ok. Did they truly understand my high risk or were they just assuming everything was probably ok because I was so young? Sometimes I feel like I am just waiting to get cancer…and that’s not how I want to live my life. I want to actually live my life and not be consumed by fear and worry.

My mom was a fighter. And I honestly am not sure if she would make the same choice as I am, but she might have if she had 1) been given the option and 2) knew it would give her a greater chance of living a longer, healthier life. Even if she would not have chosen this for herself, I am confident she’d support me in the decisions I have made for myself. As the surgery gets closer, I am positive I have made the right decision for me. Of course, that doesn’t mean I’m not nervous and scared.

Until next time, here’s to choices, decisions and silicone!