The Journey Continues, Don’t Let it Get You Down…

It has been quite a long time since I have written an entry. There is not one specific reason why I stopped.  I honestly regret not keeping this up, at least on a monthly basis. Since the last time I wrote an entry,  I have finished my first year in the Bachelor in Healthcare Management Program through WGU,  watched my oldest son Hunter, finish his first year in middle school and my youngest son Lucas, finish Kindergarten.  OMG, where has time gone?

To take you all back, I had my exchange surgery June 28, 2016. It was the easiest surgery by far to recover from. I didn’t have “rock boobs” (as Lucas would call them). I woke up to soft squishy boobs again. I was feeling pretty good about myself and happy that the exchange was over and I was “finished”. Well to say the least, I was not finished. In November, I made a follow up appointment with the famous Dr. Scott for a follow up as he wanted to make sure I was healing well. When I pointed out to him that my “foobs” felt like they were under my armpits, (aka arm pillows). He agreed with me and agreed that we could do a revision that would bring the “foobs” closer to the middle of the chest, to give the look of actual breasts. I was unable to wear an underwire bra, if I would have been able wear one I would have had to have a specialty bra made. I always use the movie reference from “Just Go With It”, with Adam Sandler and Jennifer Aniston. Humor helps everything. https://www.youtube.com/watch?v=EGQnw3E1Z80

So February 8, 2017, I had a bilateral revision surgery on both breasts. I was told this wouldn’t be very painful. HOLY COW, that was not the case. This was for sure the most physically painful surgery I have ever been through. I was unable to it up without the wind being taken away from from the agonizing ripping sensation and pain I was feeling from the gravity and weight of the 770cc implants. At the end of recovery, I was beyond thrilled with my results and have vaguely forgotten the misery I endured for 4 days.

Fast forward to July 2017…I have slowly been noticing that my bras are giving me ulcers in the middle of my chest, I have bee having to pull them up and into my bras and my arms are starting to develop pillows again.  I proactively made an appointment with the famous Dr. Scott to discuss my options. I went into this appointment optimistic and ready to hear my next step in this adventure…

He agreed with me that they have moved again but the nature of gravity is a bitch and the size/weight of the implant can do this.  His first suggestion would be to go up to 900cc implants and do more fat grafting. His second suggestion was to do a latisumuss dorsi flap transfer.  https://www.verywell.com/latissimus-dorsi-flap-for-breast-reconstruction-surgery-430406  We agreed that we should start at the least involved and could have the larger surgery in my back pocket if ever needed.

I was mentally prepared to undergo another revision with larger implants and the surgery scheduler called and informed me that they “device company”, that 800cc implants are the largest that are made. I was in shock. Disappointment set in and started Chin-up-gorgeous-dont-let-it-get-to-you...the questioning of asking myself if I did the right thing in December 2015, when I decided to start this process. Self pity, feeling sorry for myself, what if questions flooded my brain.  The bottom line is, I am where I am and whatever comes about will be the right thing. I started researching and asking questions to other women who have been through preventative mastectomy’s. I joined support groups of Facebook for women who have or are going to have a preventative mastectomy. One woman wrote that a company is conducting a clinical trial for women who require larger implants than are currently manufactured. I am looking into this….stay tuned  https://clinicaltrials.gov/ct2/show?recrs=a&cond=breast+implants&draw=1&rank=5

 

Until the next time…

-R-

What is really important…

While I am going through this process I have really been able to see what is really important in life.  I have always known that family is important but, I have to say that there are other people in my life that have been my biggest support through everything.  I think that I have said this before but, the path my life has taken has happened when it was supposed to.  I worked with Dr. Soriano for almost 2 years, he taught me so much, not just in my career but also how to be a compassionate, caring, appreciative, positive person.  I feel that while working in surgical oncology, I have met some of the most amazing people that have fought a serious fight against cancer.  Seeing the battles people fight on a daily basis, really put my problems in perspective.  The complaints about your child putting stickers on the windows inside the car,  your children using sidewalk chalk in the garage, your kids eating in the car and making messes (yes all of these annoying and can make a compassion quotesmess) but, all of these things can be cleaned or reversed. Or I would worry about things that are not in my control, after sitting and thinking about my “problems”, I would realize how petty these things were.  I had patients that were sitting through a weekend waiting for a Monday afternoon appointment to see if their cancer is back or waiting to get surgery, their first day of chemotherapy or an appointment to meet with the nurse practicioner at the Breast Center to get their results from a breast biopsy.  These results all can change the lives of not only of the patient but the family as well.

One month after I started my current job as a Clinical Research Assistant (I work mainly in cancer research), my mom had her bilateral preventative mastectomy.  Two months after starting my job, I was diagnosed with CHEK2.  I was given information regarding a clinical research registry study called PROMPT,  http://promptstudy.info/about-us/ .The objective of the registry study is to follow people and their families with mutations or variants in genes on these panels, so that patients, physicians, and researchers can more clearly understand these lesser-known risks.  Even though our facility doesn’t run this study, I passionately talk to patients about how important this study is and give them information on how to sign up for the study.  If it wasn’t for research about these genes, the information that we know so far wouldn’t be available and I truly believe that I would have eventually been a breast cancer patient.  A friend told me that my motto should be, “Don’t fuck with me cancer.” Along with myself and all the other previvors in the world we are giving the middle finger to cancer. I know that it doesn’t totally take my risk away but I sure the hell have a lot less breast tissue than I did before, which means a lower risk of getting breast  cancer than before.

This whole process has been worth every single feeling that I have felt.  I have felt sad, happy, depressed, confused, crazy, and frustrated (I could keep going with any of the other feelings and I am sure I felt them all).  I talk about ME all the time but this last surgery (tissue expander placement) I noticed really the affect it has had on my boys as well.  Lucas was a mess the week I went back to work. Bless the hearts of his amazing teachers, Ms. Michelle and Ms. Jolene. I can’t thank them enough for not locking him in a room but being understanding of what he was going through. He is 5 years old and doesn’t understand why he is sad or frustrated. As frustrated as the teachers were and of course Jason and I, he was finally able to figure out that he was just MAD. He couldn’t distinguish exactly what he was mad about but, I have noticed that he has become very protective of

IMG_0127
My loves, my heart

me.  He has been much more affectionate and loving. He has stuck up for me when people have said not very nice things about me.  He told me, “Mama I love you so much and I will always stick up for you. You are my pretty mama, nobody will be mean to you.” It clicked in my mind that seeing me in pain and crying from pain, I think that he realized how much he loves me. If any of you know Hunter, this boys loves his mama. He is such an amazing boy and is also very protective of me. I am such a lucky woman.  He would check on me all the time to make sure I was okay and wanted to help me in anyway that he could.

 

To wrap this post up, listen to advice you mama gave you.  Treat others how you want to be treated, act and treat others how you would want your children to act, and love others. People may act like everything is great but you never know the fight someone else is fighting in their lives. I have met some of the most amazingly strong men and women in my job and you wouldn’t know because of the smiles they have on their faces. Some of these people you would never know they have metastatic cancer because they appreciate EVERY single day that they have with their family. Don’t pick people apart, accept people for who they are and embrace other people’s personalities.  Life is short and you never know when your last breath will happen.  My boys are my world and I hope people don’t think that this feeling will EVER change. I am treat_others_how_you_want_to_be_treated-212491SO proud of who my boys are, the difference in their personalities and their individual strengths they both show.  I am the luckiest girl in the world to have 2 boys and a wonderful husband that loves me for ME!!

Fight or Flight…

 

The fight or flight response, also known as the acute stress response, refers to a physiological reaction that occurs in the presence of something that is terrifying, either mentally or physically. The response is triggered by the release of hormones that prepare your body to either stay and deal with a threat or to run away to safety. fight-or-flight.jpg(http://psychology.about.com/od/findex/g/fight-or-flight-response.htm) is a real thing.

Since December 4, 2015, my body has been on fight mode. I have been fighting reality. I have been fighting the disfigurement of my body. I have been fighting a nightmare. I have been fighting for my boys, for my husband, for my parents, for my family, for my friends/co-workers and for my patients. I don’t want anyone to worry about me because in reality I AM  okay and lucky.  I AM lucky for so many reasons. I have not been diagnosed with breast cancer, I had a HUGE amount of people around me that have shown so much love to me and my boys by visiting, bringing food, watching the boys and more…the love came from family, to people I have not seen in years to people I have not even met. THANK YOU…

People told me that I was crazy for going back to work 12 days post op but for my emotional health, I NEEDED to get out and do what I do best. I don’t like being center of attention, I just want to talk with people, do my job and hang out with patients going through their journey. There are many more things I can talk to patients about, not just about them but I can relate to them on a certain level to help build their trust.  Going through cancer treatments is one of the scariest things a person can go through and I think it would be nice to have a smiling  gal come say hi to me while receiving treatment and talk aboutreason shoes, purses or sports, instead of the patients diagnosis.  They don’t want their whole world to be cancer. Of course the disease dictates some of your life but while you are there, you can talk about so many other things and that is what I really try to, which has brought me some amazing new people in my life.  You ALL know who you are and I wouldn’t be who I am today without you.

On Tuesday, March 22, 2016 I had surgery to have tissue expanders placed.  Again, tissue expanders were supposed to be placed at the mastectomy surgery but Dr. Scott (who’s amazing), saw that my skin was not responding well to the mastectomy and there was too high of a chance to have complications.  So I was a very compliant patient and waited.  I am so happy that I waited.  I have learned so much from this, I know I am a control freak that people judge or criticize but, I like to be in control of my life (always driving, planning of things ect…), well this was out of my control and I gave the control to Dr. Scott and I sat back and rode the rollercoaster.  I remember waking up in recovery in a ton of pain and the nurses were on it and they got me comfortable but, I got the news that I had to have drains placed again.

tissue_expander
Example of the process of tissue expanders.

As much of a pain in the ass drains are, Dr. Scott placed them for a reason and I had to believe it.  Well, within the first 12 hours of being home both drains put out over 115cc= 230cc of fluid (normally to have drains removed, there has to be 30cc or less in a 24 hour period). I am quite sure that there are not a lot of people that have thanked their surgeon for placing drains because they are very uncomfortable but, I knew he doesn’t want to place them if he doesn’t have to.  He told me that he was going to pull the drains Monday morning even if they are draining over the 30cc because the drains increase the risk of infection. Getting infections are not good in any situation but it can get really complicated if an infection enters when there are expanders placed. The expanders would have to be removed and heal up and then placed again. I am on the Dr. Scott ride and going to make the best of it.

Lastly, having boobs is kinda bizarre. I have not had anything, I have had indents for the last 3.5 months. I now have temporary water balloons in my chest! I’m officially apologizing now if I tell you to feel them. They are just cool. I feel so fortunate to have the medical technology and amazing doctors to make me “whole” again. Here is to quick and happy healing.

-L-

Rachel

Hurry up…and WAIT…

Hey…..

Ever since starting this journey, I have been able to step back in my own life and observe situations.  What I mean by that is, I have been able to appreciate MY life and the things that I have.  I guess you can say that I have become more appreciative about the little things and also trying not to take things for granted. I have been so fortunate to have a husband that has done 90% of the laundry ever since I was pregnant (Lucas just turned 5), prior to surgery I took it for granted and expected it to be done. I look back at that and think how rude and disrespectful.  I think that is human nature to take things for granted.  I think that its also human nature to take life for granted. I make it a point to thank him for doing the laundry and for making dinner and all of the other things he does to make my life easier.short quotes about life

Once you have either been through a medical crisis yourself or have been with a friend/family member during their medical crisis, it is pretty normal to take life for granted. Luckily for me, I have been around the medical field my whole life as my mom is a nurse and I followed in her footsteps and work in the medical field.  I found my place in oncology, especially in breast cancer. Some belong in trauma, some in hospice, I belong in oncology. I want to be a bright ray of sunshine for patients that come in for their treatments and help them through their journey.  They are going to be going through the journey anyway so,  I may as well be my smart ass self that cracks jokes (obviously at the right time, not in a disrespectful way) and talk about my life and family. I love gaining relationships and talking with people and learning about their lives. I have met some of the most amazing people and have heard their stories of how they ended up on their journey. I enjoy developing  meaningful relationships with my patients and talk to them like they are my friend not like a disease!

There have been so many tragic events that have happened locally that just break my heart.  A local young boy was involved in a tragic accident at home that took his life.  I just can’t imagine what his parents are going through.  When I heard of this awful news I told myself to NOT be annoyed when my boys want to play when I am exhausted from a long day at work, NOT be annoyed when they are laughing and playing together very loudly, NOT to get mad when they leave a mess around the house, NOT be frustrated when Lucas wants to cuddle when I am trying to do homework.  These times in my life are going to fly by and I can guarantee you  that the young boys family wishes that he would annoy them and bug them and leave a mess in the house.  I pray for the family/friends that the hurt isn’t unbearable for too long.  The community in Stanwood is amazing.  To you #3 of Stanwood Youth Football, you are one loved little boy.

I had an appointment with Dr. Scott (plastic surgeon) last week and he was quite impressed with the way my body is healing.  Originally, he told me that the expander placement surgery would only take 1 hour  but, after examining the mastectomy flap he decided that 2 hours would be a better estimate in time.  There is a large amount of scarring and it may take a little more time to get things in the correct place but I will wake up with “breast mounds”!!  I have to say, I am kinda excited to have boobs again.  My whole goal with having the preventative nipple sparing, skin sparing bilateral mastectomy was to have minimal amount of scarring. Well, that didn’t go as planned, I am going to have more scarring.  Looking at the positive side, I DON’T have cancer and I DON’T have to wear underwire bras anymore. I am so happy that Dr. Scott waited to see how my body was going to heal because my mentality was HURRY up and get this over with. Glad I wasn’t in charge of the decisions:)th259EM3GA

To wrap things up, I just want to say, it is human nature, especially now a days with the amount of instant gratification we have because of technology to HURRY up.  Take your time, enjoy the days you have, don’t wish things would “hurry up.”  Try to take in something positive in every situation even in the worst of the worst situations.  I have noticed people HURRY up and WAIT.  Why are people in such a hurry? The people that are in such a hurry end up at the same place at the same time as the people that did stop to smell the flowers.  Life is not a race, enjoy what you have and appreciate what and who you get to share your life with.  Tomorrow is not guaranteed.

Until more…my pre-op appointment is on March 7 for surgery on March 22! I’m coming for you boobs!

L-Rachel

Next Step…

I am sorry that I have not posted in quite a while.  I decided to go back to work full time 12 days post op December 16, 2015 (bilateral nipple/skin sparing mastectomy).  I got so many different looks and questions.  Most of those looks and question were out of worry.  I am fortunate to have people care enough to tell me that I am crazy for coming back to work so quickly after my surgery.  I bust my ass at work to get things done in a timely manner and take care of my patients, but it is different work than working at home.  Scrubbing the floors, doing laundry, making the bed, vacuuming the carpets…that is what I would want to be doing if I was at home (but I am the lucky girl whose husband does a lot of those chores).   It felt right to be at work, with my peeps and my patients.

I have found it hard to find tops that are not too low cut.  All of my shirts are low cut because my cleavage was the distraction point from my other flaws, but now I look a bit different.  I am uncomfortable with myself in certain clothes.  It’s that awkward moment when you get to work and realize that your “boobs” are a little lopsided and while you think you are alone in your office, there was a man painting the office across the hall from you and watched the whole adjustment of your boob pillows. I was not embarrassed but I could see how awkward he felt.

I have this weird feeling of having to explain myself  to everyone. I am not sure why I “vomit an explanation” or have “diarrhea of the mouth” to people.  It is probably the insecurity of knowing under my clothes I am flat chested and breastless while I am patiently waiting to get my tissue expanders placed. So I apologize to anyone that runs into me and compliments on my outfit or my hair and I make an inappropriate joke about my boob pillows or about not having boobs.  Humor is the best medicine for me. Just go with it…

'Ready with the implants, nurse?'
‘Ready with the implants, nurse?’

I had a follow up with Dr. Scott on 1/14/2016 and he was impressed with how well I am healing.  He is wanting the tissue to fully heal into the muscle and then he will be more comfortable placing the expanders and start stretching the tissues.  I think I am more nervous for this surgery than I was for the mastectomy. I am nervous for the unknown. I follow up with him again on February 8, 2016 and am tentatively scheduled for March 22, 2016 to have the tissue expanders placed.

This whole process has been a whole process for my whole family. I kept my boys from seeing it for about a month because it was a bit scary looking (the skin reacted like it had been burned, 3rd degree burn) so I didn’t want to scar them forever.  Just recently Lucas (5yo) saw me get out of the shower and he said, “oh its not that bad mama, I love you anyways.”  I have found through this experience, that the people that love you don’t care if you have boobs, or how perfect your boobs are, just as long as you are healthy and alongside them living life, making memories and helping the future people  that may have to endure a similar experience.  I hope that I have helped someone, not only my family but also strangers.

If you work in the medical field you would hear “the black cloud of health  care workers.”  No question that day December 4, 2015, the cloud was there in the operating room.  Whatever happened in there happened for a reason.  I am lucky that I am not going to need to have a skin graft or another surgery to remove necrotic tissue, I just have to wait a little longer than normal to let my body do the healing. The body is amazing, it blows my mind on the things it does.  So to wrap this entry up, look at the bright side of the dark cloud. I could have had to go through chemotherapy, radiation therapy and surgery with complications.  I caught it before the word cancer came into my vocabulary. Thank Goodness for that!

More to come regarding new news…stay tuned!

L-Rachel

Who’s in Control…

For many people that know me, they know that I tend to like to be in control. I wouldn’t say I like to be in control of others but,  I do like to be in control of myself and MY life.  I don’t want to or care to control others. I know for a fact, I can’t control how others feel, what others think or the way others act. So, I can tell you right now that I am not a fan of NOT being in control and NOT having a plan.  I am learning how to be flexible with situations and things in my life.

When I saw Dr. Scott on Monday, December 21, 2015, he looked at my left mastectomy flap and told me that the tissue was healing much better than he originally thought.  He told me that he thinks my body is going to keep healing and wanted to postpone the “clean up” surgery for a couple of weeks.  In a weird way I was disappointed that my surgery was cancelled for Christmas Eve.  Not that I want to have surgery at all but, just the fact that things will move forward sooner and I will get the necrotic tissue removed.  I had mentally prepared to have surgery.  Christmas was rearranged because I had surgery scheduled. Things change and it took me a few hours to adjust to the “new” plan.

The new plan is to check back in with him next Thursday, December 31, 2015 to assess the area. He is pretty confident that he is going to be able to save most of the tissue. I called my mom right away to let her know that my surgery was cancelled and I obviously sounded upset about it and like usual she made me feel better. She said, “Trust in Dr. Scott and let him set the pace. He is in charge and he knows what he is doing.”  Even though I know that, it is hard to let go of control of myself.

A week after my first surgery in November, my lovely, supportive friend Kinsey surprised me with a boudoir photo shoot (Boudoir photography is a genre of photography that involves female subjects in sexually suggestive or sensual poses.) with her friends TK and Wendy. I have always wanted to do these pictures for Jason but, never had the self esteem to do them.  You are always your hardest critic, there is always something about ourselves that we don’t like.  We are too fat, too skinny, hair is too thin, hair is too thick, big butt or no butt, stretch marks ect…you get the point.View More: http://photos.pass.us/new-folder-196

Once I saw these pictures I had to stare at them for a long time. I looked at them and said, “DAMN!!”  I am seeing myself through my husbands eyes. He always tells me how beautiful I am, how I don’t need makeup and I am one of the only people that he knows that wakes up beautiful.  Well I don’t think that I am beautiful when I wake up but, I now do believe him that I am beautiful.  There are always going to be haters out in the world that say things that are hurtful but, as long as I can look in the mirror and see who I am, not just the outside layer but, also be able to see the inner beauty, I am content.View More: http://photos.pass.us/new-folder-196

Every single day when my boys wrap their arms around me and tell me they love me, my husband gives me a kiss, my patients give me hugs and tell me they love me and I am one of the most caring, sweetest people they have met, I know that I am doing something right!  The quote that “Your mama is always right” is so correct. My mom always told me that I was beautiful (even through high school and having to shop for formal dresses and swimsuits, I was so hard on myself).  I now know what she was seeing.  Thank you Mom for always being my biggest fan and loving me at my ugliest!

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Here is to another day on this wonderful world. Remember to love yourself, your family and friends.  Be happy with yourself and you will have a much happier life..

-L-

Rachel

OMG…

You never know how strong the mind is until is running your world.  I put on an a good show that I was OK with the circumstances that have occurred. I told everyone that it was OK and I was OK.  I was trying to trick my own mind in believing that I was OK.  I was not OK. Inside I was thinking, what the hell did I do to myself? Is my husband going to see me attractive? Are my boys going to be scared of me if they see me in the nude? Will people whisper behind my back and judge me?  Of course I knew ALL of these thoughts were crazy but I am pretty sure these are all normal thoughts that go through ones brain.

I could not look at myself for almost a week.  Thank goodness for my mom for helping through the first week.  I sure could not have done it without her.  My first post op appointment with Dr. Scott was on Thursday 12/10/2015.  When he examined me, he was very positive regarding the situation and informed me that he would not have to do any skin grafting and that he would want to do another surgery before the end of the year to do a “clean up” surgery (debridement of any tissue that didn’t survive).  Dr. Scott told me that I was released of all restrictions and could do what I wanted, so I was planning my first drive:)  Many people are surprised by this but I am really doing well, worst part now is the drains.

After the visit with Dr. Scott, I felt SO much better. I knew that I could do this. From that day forward, I was able to look at myself in the mirror and I finally had the balls to show my amazingly supportive husband my chest.  His response was, “you are still sexy”.  I feel so lucky to have a man that loves ME, not my boobs.  So now he helps me and I feel so much better about it.

On Friday, I decided to take a trip to Everett to The Bra Shop http://www.brashop.org/ .  I walked into a little boutique that had all sorts of gifts made locally and of course bras.  I was treated like a person and not like a disease.  I have seen and heard of patients being treated like breast cancer and feeling sorry for them.  Patients that are going through cancer treatment don’t want to be felt sorry for or treated any differently, if anything they want to be “normal”.  This place is great.  I was fitted for a bra that I could put my “pillows” in until I get my expanders placed.  I couldn’t have been happier with my experience. It is weird, even though I don’t have breasts anymore, when I have that bra/pillows on, I feel so much better about myself. When I look in the mirror, I see my old self.

There are certain people that know you, that you don’t have to ask for things, they are just done.  One of my longest forever friends, Malia, came down and saw me on Tuesday after surgery. She brought me the most perfect food.  Turkey lunch meat to make me gluten free sandwich, apples and raspberry sparking water. I ate those sandwiches for days. It was the only thing that sounds good and comforted me when I was feeling down. It was not just the food that tasted really good but knowing that Malia thought about what I would like and knowing that she ALWAYS has my back when I need it. Even though I don’t see her every day, every week or even every month, Malia says “when shit gets real, we are there for each other.”  That is the truth. I love you to pieces Malia.

On Wednesday my other forever friend Heather, flew in to Seattle from Boise, ID.  She had sent two different floral arrangements to make sure I know she loves me.  When I saw her face when she walked in the door I just was happy. I really dislike that we live so far away from each other but it is what it is, so we make the best out of every minute we have with each other.  We sat and talked all day and that evening once the boys were home from school, we went to the Christmas Tree farm and Auntie Heather picked the tree out this year. It is one of the most meaningful trees we have ever had because she stepped in and helped do the ornaments with the boys and she helped Jason do some trimming while I ordered pizza online.  That night we got out the jammies, candy, and Magic Mike XXL and had girl time.  We both don’t get that very much since we both have boys and don’t live close to each other. To say the least it is what the doctor ordered to distract me.  I was sad to see her go but so thankful of the 28 hours I got to spend with her. My boys miss her and talk about her daily.

To wrap this post up, I have accepted the circumstances and am totally going to have nice, new, perky boobs at the end of this. I have definitely felt loved through all of this and those relationships will only get stronger. Thank you everyone for the prayers, thoughts and nice words.

-L-

Rachel

 

Detour…

boys 2014 3
MY WORLD

The night before my main surgery, Lucas laid in my arms playing with me hair.  He said, “Mama, I’m happy you are having surgery to get new boobs so you don’t get the cancer. Mama, you would look funny without hair and I HAVE to have your hair to play with.”  I responded to him,” you are so right buddy, mama doesn’t want to get cancer either or lose my hair.  It is going to be hard and I will look a little funny for a short time but I will still have my hair.”  He smiled and gave me a kiss and said I love you mama.

 

December 4, 2015, 5:30am, I checked into Providence Regional Medical Center Everett with Jason and my mom. The great thing about being the first case of the day is that most of the time the providers and operating rooms are on time. So before I knew it I had my IV in place and my steady stream of support was visiting and giving me lovely thoughts and prayers.

On December 1, 2015, I had a dream that when I woke up from anesthesia, they were unable to place the tissue expanders behind the pec muscle because of a large seroma (A seroma is a pocket of clear serous fluid that sometimes develops in the body after surgery. When small blood vessels are ruptured, blood plasma can seep out; inflammation caused by dying injured cells also contributes to the fluid.) https://en.wikipedia.org/wiki/Seroma .  So in a weird way I was prepared mentally to wake up and not have the expanders in place.

On December 4, 2015, when I woke up in recovery, I remember Dr. Soriano coming in to talk to me and he told me that they were unable to put the expanders in because they felt that the tissue was compromised.  I was sad but I thought to myself that it will all be okay.  When I was being transported up to my room 1042, the first person I saw was my lovely husband, waiting for me to come back. I could see the relief on his face when he saw me.  I was wheeled into my room and there was my pose. My mom, Jason, Katie, Kinsey and Sonia.  So I have not seen Sonia in a few years but we grew together.  It is interesting to see  how there are certain situations that bring people back together again. I was in totally shock that she was there. After being in my room, my grandma brought Hunter in to see me and Lucas appeared. They were not liking the looks of me in a hospital bed but it was nice to see their faces. My lovely friend Kim stayed with me for 2-3 hours while my mom was at a wonderful fundraiser called Festival of Trees. After the auction, my mom came back, brought me a milk shake and fries and stayed the night with me! I feel so lucky to have the support. Knowing my boys were home with their dad and my mom was able to stay with me.

The nursing staff had to look at my incisions every hour to make sure everything was looking okay.  I really did not want to look at myself.  There were so many different emotions going through my mind.  Did I do the right thing?  Did I make a mistake in trying to save my nipples? Am I going to lose the skin on my left breast? There are certain things that I have control of and other things that I don’t have ANY control over.  I can only be a very compliant patient and do what I am told.  There are a few things that I can do to increase the blood circulation to the breast flaps, nitro cream (opens up the capillaires to allow blood flow to get to the compromised breast tissue and also to stay warm. When an area gets cold, the blood vessels constrict which reduces blood flow.

I didn’t realize until this morning, December 6, 2015, on how the left breast is very compromised and there is the possibility that the skin will not survive and Dr. Scott will need to use skin from a different  part of my body to transplant to the left breast. I can honestly say I am sad and disappointed. I am not sad or disappointed at ANYONE, just at the situation.

It is the weirdest feeling to not have breasts anymore. It is so weird, I don’t know how else to describe or explain it.  I am trying to not have my boys see the skin flaps (that are purple and bizarre looking), I can barely look at them myself.  I had just a tank top on and Lucas said, “Mama, where did your boobs go? He got a sad look on his face and he said, it makes me sad mama that you are sad.  Is the doctor going to give your boobs back?”  I told him that once I am healthy enough I will get my boobs back! He smiled but still concerned.

When I had my post op with Dr. Scott, he was “happy” with the healing. He said, “The tortoise wins the race, slow and steady.” If we make surgeries happen to quickly when you tissues  are not ready, it can cause more complications. Let’s get you the best outcome possible, so that may mean taking our time and not rushing things, but you are going to have a great outcome.”  I have the next surgery tentatively scheduled for December 24, yeah Christmas Eve but do it as soon as possible but not too soon.  He also said that he is pretty confident that he will not have to do a skin graft:) So I felt way better after leaving his office.

tortoise picture

My mom could see a weight lifted off of my shoulder. She sent me a text later that night saying “One more way we are alike, the unknown in hard to handle but we can handle reality.” She nailed how I was feeling right on the head. Like I have said, nobody knows me better than my mom.

-L-

Rachel

Are you at Risk??

There are many reasons why I am doing this blog.  First of all, it helps me cope with this whole situation.  I am happy that I got to choose to have this surgery, I got to choose to have a nipple sparing and skin sparing mastectomy, I got the choice to have genetic testing BEFORE I got cancer. The other main reason is to make a difference and educate others on genetic mutations and the importance of getting tested.

How did I decide to get genetic testing?  Our family history has a moderate amount of breast cancer, both pre-menopausal and post-menopausal women. If you think you potentially have a gene or want to be tested, contact a genetic counselor.  This is what they are passionate about and are the professionals about genetics.  I found a link where you can answer a few questions and see if you are at risk, this is just a tool and not a providers diagnosis:

http://pinklotusbreastcenter.com/risk-assessment/

Below is my family history:

  • My Grandma Lynn (maternal) had breast cancer at age 32, who tested negative for BRCA about 6 years ago.
  • My great grandma (maternal grandpa’s mom) had breast cancer in her 50’s.
  • My mom’s cousin (my mom’s dad’s side) had breast cancer in her 50’s and melanoma.
  • My dad’s side doesn’t have a huge cancer history.  My grandpa (paternal) had prostate, colon and thyroid cancer but those were all when he is older.
  • My mom had changes in her breast tissue but nothing worrisome to biopsy and one of the radiologist (Dr. Neubauer at the Providence Comprehensive Breast Center) told my mom that with her family history, that she should have My Risk Panel testing, which she obviously came back positive for. Since my mom came back positive Joy decided to test me only for CHEK2, not the whole panel and I came back positive (obviously!)  https://www.myriad.com/patients-families/genetic-testing-101/overview-2/

    grandma mom rachel
    Three generations of amazingly strong, courageous, women (if I say so my self). My mom(left), my grandma Lynn(middle) and me, Rachel (right)

I have met a few different people in Washington that had testing, found out that they had a gene or variant of a gene but never met with a genetic counselor.  They had no idea what to do with these results.  When consulting a genetic counselor, they help you through the process, they get you set up and pointed in the right direction for your future care.  I just feel sorry for all of those people because before being tested you really need to be prepared to test positive.  If you are negative you go on your merry way and live your life. If you are positive, you need to make decisions, not only for yourself but for your family. If you are in the Snohomish County area, Joy and Cheryl are the genetic counselors at Providence Comprehensive Breast Center, (they do testing on men as well, even though it is at a Breast Center), these ladies will take care of you and let you know if you are eligible for testing.

I feel so lucky that my mom and I have had the health care system we have had through this process.  Providence in the past year has implemented a high risk breast cancer program.  These patients and their cases are discussed in a conference (surgeons, pathologist, radiologist, genetic counselors), the women’s options, and what providers will need to see them.  The communication throughout the providers and institutions is superb and patient care is great.  My providers know me, my medical/family history, and support my decision 100%.

So if YOU or someone you know has a strong history of cancer (not just breast cancer) have them schedule a consultation with a genetic counselor to sort through ALL of the family history.  You can save your life or someone else’s!  December 4th is coming up quick…good quote

Love,

-R-

 

 

Sorry but not sorry…

It seems as my life for the next couple of months is going to be spent in the doctors office. It will either be Dr. Soriano’s office or Dr. Scott’s office, for pre-op appointments, surgery, or post-op appointments.  On 11/18/2015, I had my post-op appointment with Dr. Soriano, everything looked great and pathology came back negative! That was great news!

On November 23, 2015, I had a pre-op appointment with Dr. Scott. He went over the main surgery again and what they are going to be doing on December 4, 2015.  Dr. Soriano will perform the mastectomy portion and then Dr. Scott will place the tissue expanders under the pectoralis muscle.  Dr. Scott said that it is the same are he places implants during a breast augmentation.

The differences between a breast augmentation (boob job) and breast reconstruction after mastectomy with tissue expanders are:

  • There is NO breast tissue to let the breast look and feel natural.
  • A tissue expander is a temporary device that (stays in for around 3 months) will stretch out the muscle and skin to make a pocket for the implant to be placed.  Once the breast area is to the size desired, tissue expanders will come out and permanent implants will be exchanged.
  • Tissue expanders are part of the process in reconstruction.
  • Tissue expanders are put in empty (empty water balloons that will be filled weekly). So when I wake up I will not have breasts. That is the weirdest part for me.  I will hopefully have both tissue expanders in but he said if he feels that it is unsafe because of something, like an infection or the tissue is not healthy enough at the time, he will not put the expanders in (which is rare but could happen).
  • The reconstruction process is like building a house, you need:

Step 1- A good team to help build the house (doctors, nurses, family and friends that support and help you through the process)

Step 2- foundation (nipple delay procedure)

Step 3- walls (mastectomy with tissue expander placement) homebuildin

Step 4- Roof (Tissue expander fills)

Step 5- Sheetrock and siding placement-(Exchange of Tissue expanders for permanent breast implants)

This is the first appointment that I have had Jason come to.  There have been a few people that have told me that they think it is weird that I have not had Jason at all of my appointments.  I am the type to protect others. I don’t want him to worry anymore than he needs to.  The medical field is a whole different world  and working within the medical field I understand when the providers give all the risks, they are rare but they can happen.  I don’t want him to hear all of that and have him worry.  I knew that I wanted this surgery, had my mind set and wanted his support, did not want him to worry. I wanted Jason with me at this appointment, first to meet Dr. Scott so he knew who was going to be working on me and second to learn the post-op care for incisions and drains. I loved that Dr. Scott used the analogy regarding the process of a preventative bilateral mastectomy with immediate tissue expander placement to building a house.  You have to have a good solid foundation and things need to be done the proper way to get a well built home.  If you skip critical steps, there will be complications and he wants the best possible outcome.

On this Thanksgiving Day, I have so much to be thankful for:

  • My family, my uncles (Garry and Kevin), my aunt (Mary) and cousins (Blake and Davis) laughs and love throughout
  • My mom for the amazing support throughout my whole life
  •  My dad for ALWAYS making me laugh til I cry
  • My husband for always taking care of me and the boys, doing the laundry (even though I know how much he despises laundry)
  • My boys that love their mama even when I am grumpy. Lucas keeps asking me, “Mama when are you getting your new boobs?” He makes me smile. Hunter has the biggest, sweetest heart and loves his mama
  • My grandma for always making sure there are gluten free goodies for me at family get togethers
  • My Katie/Kinsey duo, you guys seriously are my rocks, making me smile and laugh and support my craziness
  • My long time friend Malia, we have been through so much in the 33 years of life, bitchy girls throughout school, boyfriends, marriages, husbands, kids, surgeries ect…You have been there through it all, you told me the last time I saw you, “We are good at surgery and you are going to do great.” That has stayed with me.
  • My sister-friend Heather, I don’t talk to her every day or even every month but I know that she is there for me no matter what. She is coming to stay with me after surgery (she lives in Idaho), even though she runs two restaurants and has two boys to take care of, so thank you to her mama, Vicki, for watching the boys.
  • Lucas’ teachers, teaching him now how to hug me after surgery, he knows that he can hug me tight
  • Hunter’s principal that wrote me an email letting me know the school is there to support our family and to let her know if we needed anything
  • My co-workers that keep me on my toes and make me laugh even when I am not in the mood
  •  My patients that enjoy me as much as I enjoy them.

My life is full of things to be thankful for, I am not sure I can even name them all.  I find people rolling their eyes when they start complaining, I end up trying to turn it into something positive.  I know it is human nature to complain, we all do it but I have tried to think positive about everything. We are truly lucky to wake up every single day.  So I apologize in advance (NOT REALLY) for trying to be positivim-not-sorry_o_1546151e. It is good for the soul and good for every one around us.

-Rachel-