Friday, January 30, 2015

A whole new world...

While my friends are thinking about getting ready for bathing suite season, I'm thinking about hormone replacement therapy.

While most couples are planning their valentines day... I don't know when the next time I'll see my husband will be.

I'm not feeling sorry for myself, I just realize, every now and then, how different my life is from the people around me.


Thursday, January 29, 2015

Holy Hotflash Batman!

Yes, Hotflashes and night sweats suck! I'm tired, have a headache, irritable and bloated.. plus I'm craving sweets like nobodies business!

At 29 years old though, the real risk of going through menopause is the risk for osteoporosis. Your bones have a much longer time to lose density than a woman going through menopause at the age of 45-55.

So, having a complete hysterectomy is not a decision to be entered into lightly.

I have no regrets, but I'm just being honest. There are risks. Know the facts before making a decision about risk reduction surgery!

Tuesday, January 27, 2015

BRCA-utiful

According to this website47% of women with ovarian cancer who have a BRCA mutation have no relevant family history of breast or ovarian cancer.

That makes sense. My mom was the first one to be diagnosed with ovarian cancer and that was 8 years ago. Since then, we've had no less than 6 women test positive for the BRCA-1 mutation, 2 of which have ovarian cancer.

This just goes to show you how important gene testing is. If the first person diagnosed gets tested for the gene, it paves the way for all the generations to come. 

We never knew! If we had, my mom and her cousin could've escaped this horrible disease.

Monday, January 26, 2015

Take away the pain

My mom went in to in-patient hospice today. She's in extreme pain, and worse than that, the nausea.

It's possible that the nausea is being caused by an obstruction which is how most ovarian cancer patients succumb to this terrible disease.

The reality of this situation has slapped me in the face this week.

I feel like I picked the worst possible time to have my surgery, but she wanted to know I'd be alright.

I don't want her to suffer anymore, but I can't stand the thought of her leaving us.

It's time for some therapy. The person I would run to with this is my mom.

I hope they can make her comfortable. From the bottom of my soul.... Pleeeease make her comfortable!!!!!

Sunday, January 25, 2015

Grey's Anatomy

You watch these medical drama shows (Grey's Anatomy is my favorite) and you see the surgeons, doctors, nurses and staff all interacting and saving lives and you get sucked in!

I have been in so many hospitals for so many things with my family.

Ear Surgeries, Mom's Brain Surgery, broken arm, brother slicing his arm open, my brother's seizures, mom's ruptured spleen, cancer, gallbladder surgery, freak accident, cellulitis , staph infections, thousands of tests and then, of course, my hysterectomy...

Hospitals can be scary and depressing places for a lot of people, and I totally understand that. I feel very at home in a hospital though. They have saved my mom SO many many times, and I guess for me, it's comforting to be in a place filled with so much hope.

I've seen in real life, how amazing the hospital staff is. Really one or two people can make all the difference in a patient's life/recovery.
I definitely have a few that come to mind from the past few years, and even though it's their job, and they see hundreds of patients, those patients don't see hundreds of them.
 So, Doctors, hospitalists, nurses, CNA's.. Thank you for taking such good care of my family!


(by the way, it's really hard to watch Grey's Anatomy right after having a major surgery!) lol
If you are in the medical field.. Give yourself a huge pat on the back for having an awesome rewarding career that changes lives! :-)

Image gathered from: http://www.disneydreaming.com/2014/05/05/greys-anatomy-stars-sign-new-2-year-contracts/

Saturday, January 24, 2015

2 words

This crazy 29 year old menapausal chick has one thing to say....

FUCK CANCER!!!!!!

sorry if I offended you. 

There were no other words.

When 1 thing destroys the lives of almost everyone you love... That's all there is to say about that

I can't sleep. 

I love you mom.

Thursday, January 22, 2015

Aftermath

Wow! Once the morphine wears off, you become fully aware of how much recovering from surgery sucks!!

I thought it would be a walk in the park since it was the robotic surgery.. Not so much the case.

It's been hard to breath because of the pressure and even worse to cough! I sneezed this morning and I started questioning if I was gonna make it! Lol (slight exaggeration, but it was really bad)

I'm off narcotics and trying to cope with just IBProufen. Narcotics make me feel really gross.

I had an awesome nurse at the hospital all day yesterday! He made me get up and walk around, even though I tried my hardest not to! It payed off though because now I'm able to get out of bed on my own.

I am home now.

I have no regrets. Even though the recovery has been much harder than I anticipated,  I can now have peace of mind knowing that I won't get ovarian cancer.

I still highly recommend all BRCA patients (females) having this done.

It only hurts til the pain stops. (My old boss used to say that)

Thanks for all the flowers & cards! It means a lot!

Tuesday, January 20, 2015

Ovar it!

I did it!!! I got both of my New Years resolutions done in January this year!!!!

1.) Start a blog
2.) Get a hysterectomy

BOOM! I'm feeling very accomplished at the moment.. aaaaaand also high on morphine too ;-)

My surgery went well today & Dr. Monk told my family that he didn't find any cancer, but that he is very confident that I will NEVER get Ovarian Cancer.

NOVARIAN CANCER!!!

That's what it's all about. (Well, that and it's all about that bass)

My shoulder pain is gone from the CO2 they use during surgery, it only lasted a few hours.

Other than that, I just have a deep raspy cough from when they had me on a ventilator and it's pretty awful coughing with these incisions, but that's just me being wimpy.

This experience has put A LOT of things into perspective for me about how my mom feels after her surgeries (which are WAY more invasive) and also how she feels on pain meds and why she doesn't feel up to a whole lot.)

My mom is just so amazing. She does all of it with love and grace and has inspired me my entire life.

Thank you mom, for the gift of life... A 2nd time.

Thanks everyone for the overwhelming love and support & all the well wishes!

......aaaand I'm off to snoozeville <3

Monday, January 19, 2015

Risk Reducing Surgery

Here is the post about what you can do to greatly reduce your risk for breast and/or ovarian cancer with the BRCA-1 gene.

As most of you know, Angelina Jolie had a Hysterectomy and double mastectomy. She caught some flak for that, but if I were in her shoes, I would've done the EXACT. SAME. THING.

Aren't I in her shoes, you might ask?!?  No.

Although we both carry the same gene... The ONLY thing (and I mean ONLY thing) that I have over Angelina Jolie, is my age. I am 29 years old.

At 29 years of age, some of these options can be pretty devastating and should not be entered into lightly.

So, here's the options for risk reducing surgery for women with the BRCA-1 gene:

Prophylactic Bilateral Mastectomy (otherwise known as "double mastectomy)- this surgery reduces the risk of breast cancer by 90%
Bilateral Salpingo-Oophorectomy (with or without Hysterectomy)- This surgery ideally should be performed between 35-40 years of age or upon completion of child bearing. This will reduce the risk of Ovarian cancer by 96% and the risk of breast cancer by as much as 56% depending on the age at which the procedure is performed.

Now, some people choose to do nothing and let nature take it's course. Some do both surgeries, some choose one over the other. Whatever a person chooses for themselves, is the right decision. I will not preach what I think is the right thing to do. All I can say is that Doctors recommend both surgeries for the greatest risk reduction.

I had my mind made up before I met with my doctor, Dr. Bradley Monk at St Joseph's Hospital in Phoenix, AZ. The wonderful thing was, he agreed with me on what I chose as a course of action for my situation.

Sooooo.... What did I choose?

I chose...

***commercial break***

hahahahahaha. Just Kidding.. This isn't Grey's Anatomy ;-)

I chose to have a complete Hysterectomy with a Bilateral Salpingo-Oopherctomy done using the davinci robotic surgery method for a minimally invasive approach.

It sounds fancier than it is. Dr. Monk will remove my Ovaries, fallopian tubes, uterus, and cervix through 5 small incisions with the help of a guided robot.

OMG!!! WHEN?!?!?

Tomorrow.

Yep, that's right... Tomorrow morning I check in at 09:30 for my surgery.

I'm a little nervous because I absolutely HATE anesthesia and I hear the bloating and gas afterward isn't much fun either (is it ever?)

I just chugged a gallon of Miralax mixed with Gatorade. It's been a fun evening ;-)

Hormone replacement therapy is not recommended with BRCA patients due to the risk of breast cancer, however, who wants to go through full blown menopause at 29 years old?!? Not THIS chick!!! It is known by doctors that the combination of estrogen and progesterone together can fuel breast cancer, but I will not have progesterone since I will no longer have my uterus. So, Dr. Monk & I agreed that a small dose of estrogen for a few years will be better for me so I don't have to go through SUCH a drastic change at this young of an age.

I will keep up with my mammograms and breast MRI's alternating every 6 months and later down the road I will revisit the option of a double mastectomy.

By doing this I will reduce my risk of ovarian cancer by 96% and my risk of breast cancer by up to 56%. My family and I all agree that this is the best option for me right now.

So, wish me luck!

Be back soon....



Sunday, January 18, 2015

Cancer Genetic Risk Assesment / Cancer Prevention Screening

I have the BRCA-1 gene 4Q1538X(4731C>T) mutation.

What is that?!?!?!?

Basically you have 2 sets of genes. One from your mother and one from your father. When one is mutated, it doesn't function correctly... and there in lies the problem. My bum gene.

That's about as scientific as I get. ;-)

...but here's what it really means to be BRCA-1 positive.

Risks:

Women:
85% risk to develop breast cancer
44% risk to develop ovarian cancer

Men:
0.1% risk to develop breast cancer
20% risk to develop prostate cancer

They do not yet know why some women get one cancer vs. the other..

In my family, we have had 2 people with ovarian cancer & nobody has had breast cancer, even though our risk for breast cancer is much higher.

Screening:

Women: 
Mammogram- yearly, beginning at age 25, or 10 years earlier than the earliest diagnosis in the family.
Breast MRI- Yearly (preferably 6 months after mammogram)
CA-125 & Transvaginal Ultrasound- Both are performed every 6 months beginning at age 30, or 5-10 years earlier than the earliest age of ovarian cancer in the family. Preferably after day 5 of the menstrual cycle. 
( CA-125 is a blood test otherwise referred to as a "tumor marker". It detects the level of cancer in your blood)

Men:
Breast self-exam- Once a month is recommended 
Clinical breast exam- Every 6-12 months starting at age 35.
Mammogram- Can be considered by age 40, then yearly if gynecomastia and/or glandular breast density is present.
***It is recommended that men with BRCA alterations adhere to population screening for prostate cancer, which include yearly PSA and DRE exams. 
( PSA = Prostate-Specific Antigen     DRE = Digital Rectal Exam )   

soooo... Basically I've been poked and prodded every six months for the last couple years. I was taken off birth control pills, because the risk for breast cancer is higher when taking them due to the added hormones to your body. (However, it does help protect against Ovarian cancer though) 

Early detection is the key! So even though it sucks... It's totally worth it & it's really not THAT bad. Women should be getting yearly check ups regardless, so it just switches to every 6 months instead. Sure, it's a little more invasive, but it puts your mind at ease and gives you a fighting chance!

There are measures that can be taken to greatly reduce your risk of these cancers and that is where I will start my next post tomorrow.

*****Note for the gentlemen: I'm terribly sorry to have used words such as "transvaginal"  "gynecomastia" and "Rectal"*****

                                           Image gathered from: http://www.thaibreast.org/index.php?mo=3&art=42084739


Saturday, January 17, 2015

Mother, Daughter, Wife, Sister, Friend, Caregiver, Hairstylist

My mom often tells me that I should be a nurse. I disagree, but only because of the needles. I can't do needles. 
I can get piercings and tattoos galore, but the moment I need a shot.. Sheer panic. Hahaha! SO irrational!
I couldn't inflict pain on another person, even though I admire nurses and the goal is to make patients feel better, I realize a lot of procedures are painful and I just couldn't do it.

I like making people feel better. That's why I'm a hairstylist! (and amature therapist... Clients tell us EVERYTHING!)

I had planned on posting percentages and risks with BRCA-1 & BRCA-2, but I had mom & caregiver duty & halfway through the day, I ran out of steam!

So, tomorrow..... I promise!

Try not to lose too much sleep over it ;-)

Thursday, January 15, 2015

Mean Gene

So there was, 27 years old, with a brand new baby, taking care of my mom with cancer and my husband was deployed in Afghanistan, and I'm getting tested for the BRCA-1 genetic mutation. (Which by the way, sounds so much cooler than it is...It's like I should be an X-men or something!)

Anyways, The test is simple! Just rinse your mouth with scope, spit in a cup & swab your cheek! Or you can do a blood test, but seriously, WHO in their right mind would rather have blood drawn than rinse with scope?!? We'll just say maybe some people are allergic to mouthwash! ;-)

After the test, the genetic counselor will sit down and go over your family tree/cancer history with you and some of the information about what it means to be in a family with this specific genetic mutation. The genetic counselors are some of the most amazing people ever! They are SO knowledgeable and sympathetic and what fuels them is that they're potentially saving people's lives!

Now comes the waiting game! The "sample" albeit blood, or spit, will be sent to California, for what will feel like an eternity, but in reality is only approximately 2-4 weeks.

Then you'll get the call... "hi may I speak with Kymberly Keel?"
"It's Keil, pronounced 'Kyle' "
"Hi Mrs. Keil, this is Carrie from Virginia Piper Cancer Center calling with your BRCA test results"
"OH!"
"Would you like to set up a time to come in and meet with us?"

hahahahahaha! Whaaaaaat?!?!? Just tell me the flippin results!!!!!!!!!

"sure, how about right now?"
"oh I'm SO sorry, how is next week"
"uhhh.. fine I guess, can you at least give me the results over the phone?"
"yes, I'm so sorry to inform you that your test came back positive for the BRCA-1 genetic mutation"
"ok see you next week"

feeeeeeeeew! I don't have to wait a week to find out.
***insert a different F word*** I have the gene...

Welp! Can't win 'em all! At least I KNOW!!!
...and that's just it, knowing is half the battle! What you do with your new found knowledge is up to you, but (in my personal opinion) I'd rather know so I can avoid what my mom has had to endure. Also, There is a 50% chance my daughter could have the gene. So, when she's 18 (if she's willing) we'll get her tested too.

I went in to have a sit down with the genetic counselor, and it was amazing. They explained EVERYTHING to me. What my percentages are of getting breast and ovarian cancer, the screening process for early detection of said cancers, risk reducing surgeries (this was before Angelina Jolie had hers done, so I was completely shocked when they told me).. and SO much more!

In my next entry, I will go over all the numbers and percentages that a BRCA-1 patient has and what you can do about it. I will take you through my journey of being poked and prodded every six months and what I"M doing with my knowledge of the gene!

If you or someone in your family has Ovarian or Breast cancer (or for goodness sakes, both) I urge you to look into getting tested for the BRCA-1/BRCA-2 genes! Not everyone wants to know, but everyone should at least have that option! Feel free to ask me any questions you have regarding the tests, if insurance covers it, how you're qualified to be tested, where to go for testing, etc. If I don't know, I have a network of people who DO know, & I will find out for you! Please!! Do NOT hesitate.. This is one of the most important things in the world to me! (aaaaand now I'm being preachy)

Love you all... Good night!

Wednesday, January 14, 2015

What's this all about?!?

Welcome to "Novarian Cancer"! A blog about my journey being BRCA-1 positive and the daughter of a stage 3 ovarian cancer "fighter". I am taking this opportunity to share my personal experience and knowledge with you about what it means to be BRCA-1 positive and how to give myself and my family a fighting chance at avoiding cancer altogether.
My mother was diagnosed with stage 3c ovarian cancer. Meaning a large tumor was found on one ovary (her left) and had metastasized in the surrounding areas of the abdomen.
For 8 long years, she's fought this horrible disease. She's had every surgery, chemotherapy, radiation & clinical trial available.
They call this disease "the silent killer" for a reason.. Typically, a patient isn't aware they have it, until the tumor is so large that it causes an obstruction (stage 3 & 4). Once the cancer has made it to this point, it's time for damage control & even the strongest fighters, like my mom, may end up losing in the end.
She's in the final stages of her battle and recently accepted in home hospice care. I have quit my job and uprooted my family to take care of her. You see, not only is she my best friend, but she's also saving my life. I owe her this & so much more. I would do anything for her.
As I said earlier, I am BRCA-1 positive. I know that because of my mom (the matriarch of our family).

What is BRCA-1?!? 

Yea.. I said the same thing when I first heard it.

 BRCA-1 and BRCA-2 are the genetic mutations responsible for hereditary breast & ovarian cancer. Once a patient has tested positive for one of these genes, there's a 50% chance that their siblings and their children have it as well. The gene is passed down by one parent (hence the 50% chance).
My mom tested positive.
She made it a point that I get tested as well, so after I had my daughter 2 years ago, I went in for my genetic counseling and BRCA test, and I too have the gene.
There you have it, now I know  (which my mother never did until it was too late). She gave me a fighting chance! Now I can take all of the measures necessary to avoid getting breast and/or ovarian cancer... How?

Stick with me through my blog and you'll soon find out!