August 24th, 2013

I can't believe I haven't blogged since June 19th. The last few months have been absolutely crazy. I'll give an update on my progress then I'd like to share some thoughts. 

I am in the expansion process. Tissue expanders were placed behind my pectoral muscle during my mastectomy surgery June 3rd.

This is a picture of an expander before it is filled. 

The plastic circle is a port. The plastic surgeon uses a magnet to locate the port and inserts the needle through my skin.  He adds a small amount of saline at each visit. 
The expander is stretching my skin and muscle. 
 It's completely bizarre. 
It's also completely uncomfortable and nothing sucks more!

Here is what the expander will look like once it is completely filled.

 I've been going for "fills" every couple weeks. 
The fill procedure is not painful because I have no feeling anywhere across my chest. 
 I am very sore and experience a burning sensation for days while the skin stretches.
The skin is very tight and hard. I feel like I'm wearing coconuts.

I haven't slept through the night since April 23rd.

My exchange surgery is September 16th at Advocate Illinois Masonic Hospital in Chicago. The surgeon will remove the expanders and put in silicone gel implants. These will last for about 7 years. I'll have drains again (sigh) and my incisions will be inframammary. I'm hopeful this surgery will go as well as the others.

The pic is me, my incredible mom, dad, and sis.  This journey started with my moms diagnosis of breast cancer in November, 2012. My sister and I got our BRCA 2+ diagnosis in March, 2013. FYI-my dad is the only one in the picture with breast tissue. LOL 
I am so thankful my mom is finished with chemo and radiation and was able to come for a visit. I don't think I'm going to let them go home!

I am not the same person I was six months ago.
These surgeries have changed me physically and emotionally. 
 I am healing well.
 I have lowered my risk of breast and ovarian cancer. I'm doing what I can to lower my risk of other cancers related to brca.
I'm exhausted. I'm emotional. I'm content. I'm scared. I'm loved. I'm thankful. I'm anxious. I'm energetic. I'm insecure. I'm relaxed.  

I'm feeling old. 

I am all these things- 

I don't take anything or anyone for granted. 

I tell my family I LOVE them every day.

I hug my boys and kiss my hubby.

I'm trying to live intentionally.

June 19, 2013

Not sure why I found this shirt funny a few weeks ago?

 

It's been 16 very emotional days since my mastectomy.  The surgery went well and all my pathology is clear.  My chances of developing breast cancer is less than 5%.  That is the awesome news.

 So many people have asked about the actual surgery so I thought I'd walk you through it. 

The pre-op team couldn't get an IV in because I was dehydrated so after 5 shots of numbing agent and 5 sticks with a very large needle the head dude had to come and place the IV.  My breast surgeon and plastic surgeon armed with sharpies marked up my chest.  I was only in surgery for about two and a half hours. The breast surgeon took samples from both nipples and they were tested on site.  The pathology was clear so she was able to leave them.  She then removed the breast tissue from high near the collarbone and wide to the armpit. The plastic surgeon then began his surgery. His job was to create a mound so I can eventually have breasts.  The skin is very thin from removing tissue so he used alloderm, which is donor tissue.  He placed expanders behind the pectoral muscle and against the chest wall. These will be filled with liquid over time and stretch the skin so it can handle an implant. They are very uncomfortable. They are plastic and have a metallic port so I will set off security alarms!  He was able to fill them with some saline at the time of surgery. I expected to wake up flat so I was happy to look down and see a small mound.  My chest was extremely bruised but I thought it looked beautiful. I had 4 drains sewn in that came out of my sides.  They collected blood and fluid from the spaces where breast tissue used to be. I was not able to shower while these were in. They made it difficult to sleep. My wonderful husband kept track of my medications. I was given a pain med, a muscle spasm med, a stool softener, a med for nausea, and an antibiotic. I was off all medications except for Motrin and Tylenol by day 5.  My husband had to empty the drains and keep track of the fluid count. We needed each drain to measure less than 30 cc in a 24 hour period. I was lucky and only had them in for 5 days. The plastic surgeon removed them and it hurt.  Lets leave it at that. I will be seeing the plastic surgeon to begin "filling" the expanders. I'm small so it shouldn't take too long.  He was concerned that my left nipple had been compromised but is hopeful it will make it. (doesn't that sound ridiculous?) Everything seems to be going smoothly.  I will have an exchange surgery in the next few months and the expanders will be removed and I'll have implants put in. Let me set the record straight--- no I can't get any size I want.  This is not like an augmentation. The plastic surgeon takes measurements and that determines my size. A reconstruction is different because there is no breast tissue. I'm just happy that I can have breasts and no cancer!

 

2 of my drains

 

They look like grenades. (Jackson Pratt drains)

 

 

 

 

Jim in the recovery room. I made him take this pic.

 

Just home from the hospital. The recliner was a lifesaver.

My mother in law washing my hair in the sink.

 She took great care of me too.

 

 

I wanted to write about the emotional roller coaster during this experience.

I've had two major surgeries in less than 2 months. The first put me in menopause.  Hot flashes, sleepless nights, memory fogs, and messed up emotions. The second removed my breasts and placed foreign objects in their place. I knew what to expect from both surgeries. I knew they wouldn't be easy.  I did my research.

But, This is hard. 

I want to feel like myself again. I know I will, but I'm not a patient person.

I'm tired all the time, I can't even freakin vacuum. 

I know I'll make it and someday this will be a distant memory but right now it sucks.

Don't get me wrong---

I am so thankful- no regrets!

 

I need a vacation. Hawaii anyone??

 



Surgery Day- June 3, 2013

 

 

My friend Elizabeth, a survivor, gave me an amazing devotional book.
It has brought me great comfort because I know the words are true.
I believe.
 

Trust Me, and don't be afraid. Many things feel out of control. Your routines are not running smoothly.  You tend to feel more secure when your life is predictable. Let Me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of My wings, where you are absolutely secure.

When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities. Instead of bemoaning the loss of your comfort, accept the challenge of something new. I lead you on from glory to glory, making you fit for My kingdom. Say yes to the ways I work in your life. Trust Me, and don't be afraid.

 

I am ready.

 

I am at peace.

 

I am so thankful for all of you.

I'm writing this blog post on Saturday before my surgery. I'm doing much better than the last time I posted.  I feel great. I'm listening to the Hawks game in the background and the sun is actually shining. My puppy is laying at my feet. The boys (and friends) are laughing downstairs. Jim is beating a level for me on candy crush. 
Just a normal Saturday afternoon.
 What's there to be afraid of?
 I trust my surgeons.
I'm healthy.
I am faithful.
I have my bag packed and new sheets on the bed. A friend brought me a cozy blanket and pillow yesterday for my recovery.
My sister says "pretend you're going to a spa."
I'll try!

I'm having a prophylactic bilateral double mastectomy with expanders at Advocate Illinois Masonic Hospital in Chicago.  I have to be at the hospital at 5:30 am. My surgery is suppose to start at 7:30 am. I'll be in surgery 3-4 hours then in recovery for 1-2 hours. It is going to be a long day!
If everything goes as planned I'll be coming home Tuesday, June 4th (Jordans 20th bday!)



thank you, friends, for taking this journey with me.


 

shout out to my family



This is my best friend, husband, partner in crime, lover, father to my children, sugar daddy- Jim.

  I couldn't have made it through this last year without his support.  He encourages me when I'm down, paints my toenails when I can't reach them, and holds me when I cry. We've been married for 22 years and he makes me laugh...still.

 He is my rock.

 I am deeply in LOVE with this man.

 

 

 These are our babies. 
Ya, I know they're 20 and 17! 
Would you believe I have heels on?
Sometimes they forget I'm the mama, not a doll.
They bring me dairy queen, send me lives on candy crush, watch scary movies with me when dads away, and STILL hug me in front of their friends.
I am proud of them.
I LOVE these boys with all my heart.

I am not alone on this journey.

I couldn't do any of this without the love and support of my family.

 

 

 



 

May 22, 2013

I'll take a large Courage and a side of Strength. Hey, does that come with Peace?

 

 The last couple days have been about preoperative visits with my surgeons.  Everything is a go for my prophylactic bilateral mastectomy Monday, June 3rd 7:30 a.m.  I came away from both appointments feeling positive and peaceful. I've done my research, I've chosen the best doctors, and I have the most supportive family and friends.  I know I'm in good hands.

So, why am I freaking out on the inside?

 

Okay, I'm gonna to say it.

 

I.AM.SCARED.

 

I don't wanna be. I haven't allowed myself to be. I wish I wasn't.

 

scared.

 

 It is not reversible. They are amputating a part of my body. It's not like I have big boobs. They aren't even pretty. But, they are MINE. They're part of me. What will I see when I look in the mirror? What will it be like not having sensation? I have about a hundred more questions running through my mind (mostly in the middle of the night).

 

I haven't let myself go there because I don't have a choice. They are ticking time bombs. I heard a great analogy recently "if you were about to get on an airplane and they told you it had an 87-90% chance of crashing- would you still board the plane?"

 

 

Its confusing to feel confident and scared at the same time.

 

In writing this blog I've become an open book. I'm sharing my thoughts and feelings and sometimes they aren't pretty. 

Don't feel sorry for me-

if anything, send positive thoughts and prayers

(and maybe some reeses).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



Tuesday, May 14th.

 

 

HAS ANYONE NOT HEARD THE NEWS???????

"My Medical Choice" by Angelina Jolie was released today.

http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=1

 

She is BRCA1 positive and recently had a prophylactic double mastectomy.
  Now comes all the misinformation and opinions from people who have not done their research and have no idea what they are talking about.  I belong to a few groups on Facebook- all women who are BRCA positive.  We get advice, give encouragement, and share our stories with one another. ALL POSITIVE.
 I didn't realize until today,while browsing outside my groups, that there were people who thought having my breasts cut off and being in menopause at age 42 was somehow related to "wealth or vanity".  Really? I actually read that on a feed today. It was directed at Angelina but I felt offended. I wrote a response "have you seen her breasts? do you have any idea what a mastectomy involves? her beautiful tomb raider breasts will never be the same and she may never have feeling in them again?  Vanity??? Seriously???"

Wealth was also talked about.  The dumb dumb obviously didn't know that if you fall within the guidelines insurance will pay for the testing as well as the surgery.  If you don't have insurance there are doctors and non profit organizations that will make sure you get the testing and treatment you need.
 

I've felt nothing but love and support from my family and friends so the rant above is not aimed at you! Just needed to get it off my chest (heehee)
 

I thought I would provide some additional information on BRCA:

 

Having a BRCA gene mutation is uncommon. These mutations are present in far less than 1 percent of the general population.  Inherited BRCA gene mutations are responsible for about 5 percent of breast cancers and about 10 to 15 percent of ovarian cancers. http://www.mayoclinic.com/health/brca-gene-test/MY00322

 Harmful BRCA1 mutations may also increase a woman’s risk of developing cervical, uterine, pancreatic, and colon cancer. Harmful BRCA2 mutations may additionally increase the risk of pancreatic cancer, stomach cancer, gallbladder and bile duct cancer, and melanoma.

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

 



Who should consider testing?

Genetic testing is only recommended for certain people, including those with:

• A personal history of breast cancer at age 50 or younger
• A personal history of triple negative breast cancer (breast cancer that is estrogen receptor-negative, progesterone receptor-negative and HER2/neu receptor-negative)
• A personal or family history of male breast cancer
• A personal or family history of bilateral breast cancer (cancer in both breasts)
• A personal history of ovarian cancer
• A parent, sibling, child, grandparent, grandchild, uncle, aunt, nephew, niece or first cousin diagnosed with breast cancer at age 45 or younger
• A parent, sibling, child, grandparent, grandchild, uncle, aunt, nephew, niece or first cousin diagnosed with ovarian cancer
• A family history of both breast and ovarian cancers on the same side of the family (either mother's or father's side of the family)
• Ashkenazi Jewish heritage and a family history of breast or ovarian cancer

There is only a very small chance that your family carries a BRCA mutation if:

• You or an immediate family member is the only person in your family with breast cancer
• The breast cancers in your family all occurred at older ages.
• http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

 

I would like to say that scheduling the prophylactic surgeries was a difficult choice. But, it was a no brainer.

87-90% chance of breast cancer VS less than 5%.

 

If you have any questions regarding BRCA or my story please email me (jstella6635@charter.net) or message me on FB. I would be happy to answer your questions or chat!

 

My prophylactic double mastectomy is scheduled on June 3rd.

 

 

 

 



April 27, 2013

I woke up Tuesday morning with a sense of peace.  I felt the prayers. 

Shel and Jim stayed with me til the very last moment.

 

 

I will not get ovarian cancer! 

 Hysterectomy and oophorectomy done. I had a rough day Monday before surgery. I was very anxious and ended up taking Xanax. What a life saver.  Tuesday morning was completely different. I felt calm and peaceful. I have to admit it didn't seem real until the gown went on and the iv went in.  Next, the anesthesiologist went over the game plan- I'm a difficult patient because I'm drug naive, tiny, suffer from vertigo, and have problems with nausea. He did a great job- maybe too good since I couldn't open my eyes until the next day! My surgery went well. I haven't gotten the pathology report back but my doctor said there were no surprises. 

My sister woke up feeling great after her surgery three weeks before- I couldn't open my eyes and was dizzy for days due to the patch I had behind my ear for nausea. I will not talk about the packing that was placed in my body. If you are going to have this surgery inbox me and I will give you the details. I'm not in pain. It feels very tender and my stomach is swollen.  I'm tired all the time. My husband has been amazing. He has taken over and encouraged me to just rest and recover. 

 

The kids had prom on Friday and that was difficult. Thankfully my sis and friend Missy took all the pictures. I was able to sit and watch. Sis and I were both exhausted after. Little things wear you out quickly.

 

Next topic, menopause.

I'm less than a week in and it sucks. The hot flashes set in almost immediately.  It's not like anything I can explain. It's horrible. The heat moves up my body and is unbearable. I'm sweating in places I never knew could sweat!  

I'm trying to be positive but,

don't hold it against me if I start swearing like a trucker.

 

Next surgery, June 3, 2013.

April 22, 2013

 the journey becomes real for me tomorrow.

 my first surgery-

 laparoscopic assisted vaginal hysterectomy w/bilateral salpingo oophorectomy.

big words for: removing everything.

I'm feeling very emotional.

 

I wish I had more to write but, I'm out of words. lets do this.

 

 

 

 

 

 

April 8, 2013

My sister had her hysterectomy/oophorectomy last Tuesday.  The surgery went very well. (the pathology came back clear btw) She said the pain felt like a bad period. I spent the night at the hospital with her and had to take a couple pictures. Who wakes up from surgery and looks this good?????

We were able to Face time with my parents, lil sis, and her son at college.  I think it helped everyone to see her and hear that she was doing well.  We actually took a walk yesterday! 

I am encouraged and hope my surgery goes as smoothly on April 23.

 

I had my MRI on April 5.  I've never had an MRI and it would've been helpful to hear about the procedure before hand because I did have some anxiety. I am happy to report it wasn't bad.  They put an IV in my arm first then I layed on my stomach with my arms at my sides. Your breasts hang down into a compartment.  You have to lay completely still.  It took 45 minutes (I got an A+ for staying so still).  They told me I could bring a cd but I couldn't hear the music over the loud banging and sirens from the machine. Be prepared for loud noise the entire time. I would also wear comfortable bottoms- not jeans.

 I got my results this morning while getting a pedicure- "we need you to come in for a target ultrasound because there is a 4mm enhancement on your right breast."

The tech was awesome and said I could come for my ultrasound at 2:00.  My sister was able to come with me to the appointment.  We go to as many appointments together as we can so no information gets overlooked or forgotten.  We talked with the tech about the difference between MRI and ultrasound.  If the MRI shows everything why am I having an ultrasound now?  She explained that the MRI shows everything but not specific.  The ultrasound is specific once something is seen.

I found out I have a cyst on the back, behind my nipple. It is benign.  I will not need to have any follow up since both breasts are being removed June 3, 2013. 

I'm exhausted.  I feel great physically but this is very stressful and it wears me out.  I didn't want to be talking about brca every day but it really does take over your every thought.  I hope once the surgeries are done and I'm healed I can leave brca in the past and start living again.

April 1, 2013

 

 

I'm sad today.  My mom is having a bad reaction to her chemo (rash on her entire body and thrush in her mouth) and there is nothing I can do to help.  I feel the miles between us. 

My sister, M, is having her hysterectomy and oophorectomy tomorrow. She is coming to terms with the seriousness of the brca2 diagnosis.  It's not easy because we really don't have any choice-the surgeries must be done.  The statistics are too high.  One doctor said "it's not if you're going to get cancer but when."  My emotions are all over the place. I'm happy because I can be proactive. I'm scared because I've never been in the hospital except giving birth, I'm annoyed because this is disrupting my life, I'm overwhelmed by the support people have shown, and I'm thankful for my amazing husband.

 

I wanted to write a little bit about my sister.  For as long as I can remember I've wanted to be with her. When I was young, I'd sit outside her bedroom waiting for her to make time for me.  I wanted to borrow her clothes and style my hair just like hers. She was confident. She was a brilliant. She was strong. She was beautiful. She was my big sister.

Years and a few wrinkles later, she is still all those things. But, now

she is also

my best friend. 

 

Please pray for M tomorrow. Her surgery is scheduled for 11:15. 

 



Not this time brca!

This beautiful woman (my lil sis) tested NEGATIVE for the brca2 gene mutation!!!

 

We are so thankful her daughters will not have to worry.

 So excited to watch these gorgeous girls grow up and rule the world without brca hanging over their heads.
feeling real blessed right now.

I'm brca2 positive. What now?

I LIKE TO KICK!  I always figured I'd be at least 50 like Sally O'Malley (Molly Shannon from SNL) not 42 when I went through menopause.

 

I'm brca2 positive. What now?

 

The first recommendation for brca2 is a prophylactic oophorectomy to reduce the risk of breast and ovarian cancer.This will take away the body's main source of estrogen. Ovarian cancer is hard to detect and is often too advanced by the time it is found. The doctor explained that she will remove the ovaries, uterus, fallopian tubes, cervix, and anything else hiding out. She will then do a pelvic wash.  Everything will be sent to the lab for testing. M and I both have cysts which didn't seem worrisome until now.  M has surgery scheduled for April 2 and I will have mine April 23.  The surgery will put us into menopause immediately.  However, we will not be able to take any hormone replacements because estrogen is our enemy. I am trying to be positive but the thought of hot flashes, irritability, depression, vaginal dryness, and other side effects freaks me out. I know it's better than getting ovarian cancer but it's still scary. 

There are a few recommendations to reduce the risk of breast cancer. The first is monitoring- frequent MRI's, mammograms, ultrasounds, and clinical exams. The second is a prophylactic double mastectomy. This is a very personal decision. My husband and I feel I should have the prophylactic mastectomy. After the mastectomy, my chance of developing breast cancer drops by 90%. Those statistics are amazing but there are sacrifices. I will lose both breasts as well as my nipples and I won't have any sensation even after reconstruction. I will be seeing the breast surgeon and plastic surgeon after I recover from the oophorectomy.

I'm tired today.  I told one friend "sharing the news is a bit scary because...it just got real." I'm feeling weepy (maybe it's hormones since I'm due to get the last period of my entire life!) or maybe I'm mourning the loss of my "body parts" already.  

Next step for me- MRI scheduled April 5th.



Day 1

me, M, and L

 

I called my doctor Monday, March 4th with the news that my mom tested positive for the brca2 deleterious gene mutation.  Heredity cancer. She asked if me and M (yep we go to the same doctor) would come in for genetic testing that morning. When we arrived, the doctor sat with us and went over our family history to include on the genetics form. We have breast cancer on both sides of the family and my aunt passed away from ovarian cancer at age 27. There is a 50% chance that neither, one, or both of us inherited the gene from our mama. The blood draw was the easy part. Hard part was waiting for the results, which could take up to 4 weeks depending on how busy the lab was. (All genetic testing for brcaAnalysis is done through Myriad Labs.) Our younger sister L, had her testing done two days later in Arizona.(results still unknown)  On Thursday, March 14th the doctor called. She asked if we would come in together because she received our test results. If we were negative wouldn't she just tell us over the phone? M picked me up less than an hour later and we were on our way. 

The doctor sat us down and said "you both tested positive for the brca2 deleterious gene mutation."  Surreal. I assured her I was fine with the news even though my eyes were full of tears. It was just weird. Not surprised but,until you actually hear the words spoken out loud its not real.

 

THIS SUCKS!!!!!!!  I mean really?????

 
What is freaking brca anyway???

 

  I never heard the term brca until my mom had her genetic testing.  Brca stands for breast cancer susceptibility. BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors. In normal cells, BRCA1 and BRCA2 help ensure the stability of the cell’s genetic material (DNA) and help prevent uncontrolled cell growth. Mutation of these genes has been linked to the development of hereditary breast and ovarian cancer.  All future information will pertain to brca2 since that's our mutation of choice (not!) 
 Some statistics: Brca2 women have an 87% chance of getting breast cancer and 44% chance of ovarian cancer. Brca2 mutation is also at a slightly higher risk of stomach cancer, pancreatic cancer, bladder cancer, and melanoma.

Dude, this is some serious sh--stuff. I'll try to watch my mouth (sorry mom).

Welcome to life as a mutant.

What now?



 

 



Before brca

 

 

This journey actually began with my moms diagnosis of stage III breast cancer in November, 2012.  The picture above was taken right before her double mastectomy surgery. She is undergoing chemotherapy and radiation will follow. Her strength and faith continue to amaze me.  

After her diagnosis, the oncologist recommended comprehensive genetic testing to see if she carried the brca1 or brca2 gene mutation. Results showed: positive for deleterious brca2 mutation.  This is where my journey begins...