Saturday, October 23, 2010
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
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
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
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
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
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
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
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 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.
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!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.
Voting on Facebook starts and 200 winning charities will be announced on .
$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.
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 :
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
Wednesday, May 26, 2010
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
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
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
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
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 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
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
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!