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Puppies

The new favorite game at our house; puppies! We play fetch, eat puppy chow, scratch bellies, etc. Wintertime fun :)

Asian Soup

I made real life dinner! Which included cutting veggies and a stove and everything! First time post-op. It made me feel more normal, which was nice :) And everyone in my family liked it! That's a win. 

This ended up being a combination of a few different recipes. And I didn't keep measurements. But here's an idea:

Sleep

I'm a night owl. Wish I wasn't. It's been my "goal" to try harder and change this part of me for quite some time now. It's hard. To change. But I'll keep trying. I want to be one of those awesome people who can go to bed at 9:30pm and wake up at 5:30. And to make matters worse, I'm not sleeping well since surgery/menopause. So I think I subconsciously don't want to go to bed because I know the night will be rough. Sigh. 

Teach Them

My hope...

Politics

Dinner

Sometimes, after having surgery, you decide to feed your kids hot dogs, and donuts, for dinner. Because you're tired. And haven't been grocery shopping. And it's what you have. And you know they won't fight you about it. And then you throw in a few veggies to make yourself feel better. The end. 

The Lower Lights

I'm in love with this music group. The Lower Lights. YouTube search them and a play list of their stuff will pop up. Brightening my day today :) This ones my fave:

http://youtu.be/PeN9ljKvrY4

Meditation

http://www.mindful.org/meditation-for-beginners-video/

One of my goals this year is to meditate. Which I've never done, really. I keep reading about the amazing benefits of even just 5 minutes a day. I've got tons to learn. So, anyone want to join me? I'm gonna give it a go! We shall see...

Most Breast Cancer

Above: the reason that the general population doesn't know about the BRCA gene mutation (even though they know people with breast cancer). Most breast cancer is sporadic (random). Only 35% has some sort of genetic link. And beyond that, only 10% of women with breast cancer have a BRCA mutation. So, one way of saying it is: Most women who will get breast cancer DON'T have the BRCA mutation, but most women with the BRCA mutation will get breast cancer. 

Patience

Life Lessons

Pause

I post this kind of stuff, cuz I'm really bad at it. Deep breathes. 

Appreciation

This month, I have had countless opportunities to feel appreciation for the wonderful, selfless people in my life. I am incredibly grateful and humbled. Oh, and I wish Fred Rogers could be our president. 

Breakfast in Bed

I got my most favorite eggs Benedict for breakfast! And raspberries. Breakfast in bed on my birthday is the bestest :) Thank heavens my amazing husband can cook. 

Marble Jar Friends

http://www.supersoul.tv/supersoul-sessions/the-anatomy-of-trust

This. This is my goal. To be a marble jar friend. To trust and be trusted. A worthy aspiration, indeed. And, I am humbled that God has blessed me a handful of marble jar friends. What would life be without those types of people walking the earth? I'm filled with gratitude. 

http://www.becomingwhoyouare.net/how-to-cultivate-self-trust-advice-from-rising-strong-by-brene-brown/

God Speaks

Superheroes

Why a Mastectomy?

Why have I chosen to have a PBM (Prophylactic Bilateral Mastectomy)? Prophylactic means preventative. I don't have breast cancer, but I've chosen to remove all my breast cells/tissue. Yes, I'm aware that it's a pretty drastic step to take. Or, at least, it may seem drastic to you. But you probably haven't been thinking about your severe breast cancer risk for the past 10 years.

I was 24 and breast feeding my second child when I found out I have the BRCA1 gene mutation. My doctors recommended that I have mammograms and breast MRI's with IV contrast, annually. However, you can't have MRI's or mammograms when nursing or pregnant. I finished nursing baby two, got pregnant again, had my third child, and nursed her for one year. At age 27 I went in for my first mammogram and breast MRI. This was stressful! Since then (so for the past 5 years) I've been in to the hospital every 6 months to alternate between these two screening methods. Generally, I get a call back after my mammograms saying "there is something in the films that we want to look closer at". But of course, they can't get me an appointment for a few days. So, I stress and cry and panic that this is the time they will find something. Days later I go back in for more concentrated mammogram images. And, to date, they haven't found anything beyond calcification spots. But I've about made myself crazy with worry. And MRI's are the worst. Mostly because of the IV. I HATE getting IV's!!! After the IV is placed, they have me lay, topless, on my stomach. They position my breasts to hang down into two holes. The room is always freezing! My head rests straight down on a cushion thing. My legs have to be bent up, resting on some sort of support block. Then they leave the room and slide me into the tube. It's really loud and makes funny beeping noises. I finally learned to ask that they turn off the MRI fan, so I don't freeze. And I have to lay perfectly still. It used to take nearly an hour, but they got a new machine last year that has dropped the time to 25ish minutes. When they put the IV contrast through your veins, you can taste it. A very strange feeling. And all of this is super expensive. We've met our deductible (and then some) every year since this process started. SO, I'm tired of it all! The time, the cost, the stress, the worry, the pain, etc. I can't imagine going through these 6 month rituals for the next 50 years of my life. Knowing that one of these times they will find cancer.

The odds are stacked against me. In my lifetime, I have an 87% chance of getting breast cancer. Why should I think I would be the one person out of 10 (who have this BRCA1 gene mutation) who would escape it? If I don't have a PBM, and get breast cancer, I would then have to have a mastectomy anyway. PLUS, chemotherapy, radiation, and the chance that the cancer has metastasized. Metastasized means it has spread to other parts of your body. Metastatic breast cancer is not something to mess around with. It kills.

What Is Metastatic Breast Cancer?

Metastatic breast cancer is also classified as Stage 4 breast cancer.  The cancer has spread to other parts of the body.  This usually includes the lungs, liver, bones or brain.

How does cancer spread, or metastasize?

The spread of cancer usually happens through one or more of the following steps:

• Cancer cells invade nearby healthy cells. When the healthy cell is taken over, it too can replicate more abnormal cells.
• Cancer cells penetrate into the circulatory or lymph system. Cancer cells travel through the walls of nearby lymph vessels or blood vessels.
• Migration through circulation. Cancer cells are carried by the lymph system and the bloodstream to other parts of the body.
• Cancer cells lodge in capillaries. Cancer cells stop moving as they are lodged in capillaries at a distant location and divide and migrate into the surrounding tissue.
• New small tumors grow. Cancer cells form small tumors at the new location (called micrometastases.)
• http://www.nationalbreastcancer.org/metastatic-breast-cancer

Because I am choosing to have a PREVENTATIVE mastectomy, I am doing all I can to avoid chemotherapy, radiation, and possible metastatic cancer. It feels right to me.

Surgery #1 BSO

I decided to have my ovaries and Fallopian tubes removed. This is called a BSO (Bilateral Salpingo-Oophorectomy). Research shows that ovarian cancer often starts in the Fallopian tubes. At this time, I'm keeping my uterus. The BRCA gene mutation doesn't have a significant increased risk of uterine cancer. I'm going to be less invasive and keep it in there. My surgery was laparoscopic, leaving me with 4 smallish incisions:

I have been having annual vaginal ultrasounds on my ovaries. Those aren't fun at all. The point is to measure the ovaries and look for any changes/growth from year to year. That is one of the only screening methods available, and it isn't very effective. The ultrasound doesn't usually show tumor growth till ovarian cancer is quite progressed. Now that my ovaries are out, no more vaginal ultrasounds for me!!!!!!

Removal of my ovaries means removing all hormones. Without hormones, I'm in menopause. At age 32. Menopause affects all women differently, so I don't yet know how my body will react. Here are some of the possibilities:

-hot flashes/night sweats
-sleep disturbances
-vaginal dryness
-anxiety
-depression
-skin changes
-weight gain
-loss of libido
-mood swings
-fatigue
-hair loss
-odor changes
-memory loss
-osteoporosis
-headaches

It takes some time for hormones to leave the body, so I don't yet know which of these symptoms will occur for me. Mystery waiting to unfold. So far I've had night sweats, sleep issues, headaches, and my hair is shedding, but I'm still recovering from surgery, so it's hard to know if the cause is hormonal. As of now, I plan to start low dose HRT (hormone replacement therapy) in the next couple of months. Because I kept my uterus, I will need both estrogen and progesterone. When women remove their ovaries AND uterus, they only need estrogen. Sometimes testosterone is also helpful to combat certain symptoms. This is all new to me, so I have a ton to learn. I also will start taking regular vitamin supplements and calcium. Bone loss post menopause is a HUGE issue. I'll need to have bone density tests.

Many women choose to not take hormones. The main reason is that hormones increase the risk of breast cancer. And obviously, if I have a gene mutation that already leaves me in danger, I wouldn't want to add any other factors to the list. I feel comfortable starting hormones because I am planning to have a PBM (Prophylactic Bilateral Mastectomy) January 2017. My doctor feels that 10 or 11 months on hormones won't have a huge impact on my breast cancer risk this year. And the hormones will help me manage this menopause transition. Cumulative hormones, for years, is where the real danger lies. And then, next January, my breasts will be gone. And my risk will be (nearly) gone. I say nearly because it's impossible to remove EVERY breast cell with a mastectomy. Breast cells are spread out beyond the actual breasts (up the chest, toward the armpits, etc.). Surgeons do their best to remove as much breast tissue as possible, but there is always the chance that breast cancer could occur in any remaining cells.

Ovarian Cancer

As I look back, I see the hand of God in my life. I was never the type of girl who would get married young. I wanted to finish college, go to graduate school, have a career, THEN meet someone, marry, have kids. But... there was a different plan for me. I met the man of my dreams at 18. Yes, 18. He was 23. In a whirlwind, I was married, and young. It was all wonderful, but definitely different than I had planned. I got my bachelors degree, then I had my first baby at age 21. Second baby at age 24. Found out I had the gene mutation. Third baby at age 26. And I KNEW... that was it. Our family was complete. My husband knew, too. And let me tell you, I'm NOT a decisive person. Like, I have to spend a half hour reading everything on the menu at a restaurant before I can make a decision. And even then, I second guess myself. But not with this decision. I KNEW. We were done having children. No more. It felt peaceful. And right. And comfortable. And we never second guessed the decision.

This all seems to be God's way of getting me to a place where I can have my ovaries removed BEFORE they kill me. Imagine if I married later in life, and had kids later. Maybe it would have been too late. Or maybe, after discovering I have the gene mutation, I would have been confused as to how many children and when/if to have them. I have talked with SO MANY women who have the gene mutation that are struggling with these life altering decisions. All of that was not an issue for me. My doctors have said from the beginning that I should have my ovaries removed by age 35. And that deadline wasn't hard to meet :) I guess God knows what's best for me after all. 

Ovarian cancer is way scarier (to me and my husband) than breast cancer. The reason being is that it is SO difficult to detect. There aren't good screening tools/tests. Most women who are diagnosed don't find out till stage 3 or 4. And it's generally too late by then. Only 15% of women are diagnosed in stage 1.  SO, this is the cancer that I have focused (first) on preventing.

Cancer By the Number

So, what's the reaction one should have when they find out they have a genetic mutation? For me, at age 24, I wanted to know what EXACTLY it meant. Like, how does this change the way I will live my life hereafter? Oh, and I cried. And as I learned more, I cried more and the scarier it became. BIG numbers were thrown at me... like 87%. It didn't take long for me to think of that as 9 out of 10. Here are the breast cancer odds for someone with the BRCA gene mutation:

I think 60% is the number for the BRCA2 mutation. I know 87% is the BRCA1 likelyhood.


And here's another chart that includes ovarian cancer and second occurrence breast cancer:

When a genetic scientist is telling you that your body is basically planning to screw you, it makes you feel betrayed. And, in that same appointment, the geneticist says that some women choose to remove the parts that are so likely to get cancer. Like, getting their ovaries/fallopian tubes cut out. And having full on mastectomies. Removing every bit of breast tissue, completely, without having cancer in the first place. Honestly, at first, this sounds crazy. Especially when there are other questions that were filling my head, such as:

I need ovaries to have kids... how will I know if i'm done having kids?
If you don't have ovaries, you don't have hormones, right?
Doesn't that mean that you're in menopause?

What the heck is menopause like?
Can't doctors just keep "checking" me, to make sure we catch the cancer early?
My breasts...are so many things...and I'm using them to nurse my babies...what about that?
How do I feel about my breasts?
What would my husbands reaction be if I have my breasts cut off?
What kind of options are there if I want to reconstruct the leftover skin into fake breasts?
Will people think I'm absolutely nuts if they hear I cut off my breasts, when I didn't even have cancer?
Do I care if people think I'm nuts?
I've never had a mammogram...what's that like?
What about insurance? Is this going to be expensive?
What is chemotherapy like? Is it really as horrible as it seems?
Are these drastic measures really better than actually having cancer?

Did I give this mutation to my kids?!

And a million other questions...but you get the idea.

START HERE: BRCA Gene Mutation?

So, I've decided to use this blog to explain some of the medical stuff I've been navigating. I know that next to nobody reads this, so it's mostly a way for me to purge some of the info, emotions, and experiences I'm having. And maybe educate someone else :)

I have the BRCA1 gene mutation. Everyone (male & female) has the BRCA gene, also known as the breast cancer gene. This gene basically makes the breast and ovarian cells strong cancer fighters. So, if a persons BRCA gene is mutated, their breast and ovarian cells are NOT cancer fighters. As "life" happens, someone with this mutation is incredibly susceptible to getting breast and ovarian cancer (also prostate and pancreatic), and at a young age. This is because their cells aren't able to repair DNA and fight off these cancers, compared to most people with regular BRCA genetic makeup. 

Anyone who has this gene mutation, male or female, has a 50% chance of passing it along to their children. My dad has the mutation. And so does his dad. We discovered all of this when my aunt (my dads sister) got breast cancer at a young age. This was sometime around 2006. Huntsman Cancer Institute was doing research about the BRCA gene mutation and asked our family to be involved in a study. Note: my great grandmother (dads dads mother) died of ovarian cancer at a young age. 

Huntsman provided genetic counseling and testing to my grandfather. They discovered that he indeed carries the BRCA1 gene mutation. They then tested his 3 daughters (my dads 3 sisters) and my dad. 2 of the 3 sisters have the mutation and so does my dad. Then they tested the female children (over 18) of those with the mutation. I got the news that I carry this gene mutation nearly 10 years ago, in 2007. I have two sisters who have been tested, and (thankfully) neither of them have the mutation.

And that's all for now. This is exhausting :) 

"Swig" cookies

Made these the other day. Delish! Google "swig sugar cookie recipe". Easy to make, and they actually tasted even better the second day :)

Snowy Snowy Drip Drip

Happy New Year! We've had SO much snow this year! And more to come. So we've been in need of a place to hang wet snow clothes. This was our solution, in the garage. Love how it turned out! And it leaves me with more space in the mud room. The only hiccup is that the kids want me to put their stuff in the warm dryer for a few minutes before they put it on. Because the garage makes everything so cold! Ha ha!