The Latest —

Hi! 

SO, I hardly ever update this blog unless there is a new/pending development — so, here goes. Baby 3 has arrived (safely!) and everything is going well on the family of five front… 

I’m meeting with my OBgyn TOMORROW at 6pm to have my post-baby/pre-op appointment regarding the removal of my tubes (different from the usual ‘tying’ of the tubes procedure)… I guess I’m getting slightly anxious about the realization that I will never be able to get pregnant again — but, after my third pregnancy, I don’t think that I’d make it through with my sanity still in tact… & after lots of prayers, baby Emily seems to be quite the “Mama’s girl” — hah. So, I think that this is absolutely the best decision for our family. 

I’ll update more after my appt with specific details regarding the surgery & what to expect/recovery time.

 

Much love. 

First Surgery Planned

So, I’m about 32 weeks pregnant & I had my 32 week check up yesterday — everything with little Charlotte looks good.

My doctor and I discussed my first plans for surgery — I’m having a Salpingectomy about 7 weeks post delivery. This means that my doctor is going to remove both of my fallopian tubes; research has shown that ovarian cancer may actually BEGIN in the tubes — so this is a great way to reduce my risk while still allowing my body to create hormones & not throw me into menopause at the age of 28 by removing the ovaries.

I must say that 1. I’m so glad that I won’t ever have to take birth control pills again! and 2. although I will still need to do my quarterly/bi-annual check ups, I’m excited that my risk will be reduced.

 

love.

I know, I know.

I’m not the best blogger on the planet; but I haven’t really had too much to say. There aren’t many decisions to be made while you’re creating life (two of them, in 2 years!) But now, life creating is winding down and coming to an end for our family (last baby due April 18th) so I need to get on track and begin deciding what is best for me.

I’ll be honest, I go back and forth… day one: I’ve got this, everything will be fine, God is in control (which I totally DO believe He is)… day two: I don’t want to be the lady that I recently read about who died when her baby was just tiny because cancer took her life, so I’m getting EVERYTHING out… day three: someone gets diagnosed with stage 4 ovarian cancer… day five: someone tells me that you can prevent cancer by making good life choices… day six: I need a nap.

Sometimes I feel like I’m not trusting God enough if I choose surgery — ultimately, I know that He holds even death/sickness/cancer in His hand and that He could cure me of even the worst possible outcome — but, I also realize that we have doctors for a reason. It doesn’t make sense to sit back and wait to see what my outcome is.

So, I think, after talking to my new OBGYN that I may have only the fallopian tubes removed after my delivery in April & then continue life as usual (nursing the baby) — enjoy what is left of my 20’s (2 years! I’ll be 28 tomorrow!) and then, stay on track to have everything else removed when I’m 30.

I could live in the fear of, well, what IF I get cancer before I’m 30… but, I could also die in a car accident… so, I don’t think that mentality is a daily thought process worthy of consuming.

That’s the latest. Everything else is going well. I’m loving being a SAHM & raising little Juliette. I’m also So excited to meet little Charlotte in a couple of months!

love.

 

I fired my OBGYN

I did. 

Completely uncharacteristic of me — but, enough is enough. First, there was the time that she didn’t tell me that I was BRCA1 positive for AN ENTIRE YEAR…& then, there was the time when she came to my delivery room & prescribed birth control…oh, and THEN, there was that time when my husband called to reschedule a consultation (and discuss side-effects…) and she told him that she intended to do surgery THAT DAY. 

I mean, I’m 27 & she wants to rush into a surgery that is going to put me into menopause…without first discussing the surgery and or side-effects or following it up with a second opinion. 

So, today, I met with my favorite Breast Center Oncologist & she found me a new OBGYN & they both encouraged me to get busy with the baby making whenever I’m comfortable (if we choose that route)…I also got some hot tea & a special parking space. 

Before my appointment I had an ultrasound of the breasts & everything looks good (non-cancerous), we’ll continue to repeat these simple, non-stressful events every 6 months until we decide to change our course of action, but for now, I’m pleased with my doctor & I’m pleased with their office, their kindness & how amazingly well they treat their patients. 

I have my ovarian ultrasound on Tuesday & my CA-125 bloodtest… & then a follow-up with “Dr. House”… 

Slightly Backwards

Side note: I started a fb page. http://www.facebook.com/brcawhat

So, now that I’ve gained my strength – I’ve begun researching. I must say that I’m slightly disappointed by the lack of information I’ve found so far on the prophylactic oophorectomy (removal of ovaries) surgery – the youngest person that I’ve found so far that will be considering this will be 35 before her doctor will even agree to do the surgery.

However, it seems to be semi-common in the BRCA community to have a prophylactic mastectomy (removal of breasts) as early as 21 (and earlier, I’m sure) which makes 27 sound aged.

But, me, my situation being slightly backwards – I had a baby and within 24 hours my OBGYN came to my hospital room, with her prescription pad in hand – “So, which birth control did you think you’d be interested in trying?” – getting pregnant again is not an option for me. Technically, that isn’t true – I have until I am 30 if I’d like to stay within the medical recommendation.

I went in for my 6 week check up and I saw the midwife in the practice that I go to and she did everything and again, wrote me a prescription for birth control – just “in case” I didn’t have one already (which I did, for a year). But she was even more bold; she wrote hers for only 3 months assuming that I’ve chosen the March date for surgery.

I think that the reason I’m most looking forward to this surgery is because I almost always have an ovarian cyst. I had one when I got pregnant. It was still there when I was 12 weeks & could very well still be there, right now. I guess, we’ll see soon. But, the cyst before that one was half solid, “abnormal”, and painful. I have been getting ovarian cyst since I’ve begun ovulating.

I don’t like the unknown; I’d rather have the surgery & not have to wonder every single time whether or not this cyst could be “the one”.

I guess that’s the latest. My appointments post baby begin next week…

An update; finally!

Okay, so those of you who’ve read & followed my story — I’ve reached the next level of my journey and decided that it’s time to write an update…

As most of you probably know, my husband & I decided to try for a baby during the honeymoon & were blessed to find out that we were expecting quickly…(immediately, hah)…and have welcomed little miss Juliette Londyn into our family on November 26th (a little over 6 weeks ago).

Although having a little beautiful baby girl is joyful & exciting, I’ve now reached the point in my life where I will be making decisions regarding the BRCA1 & what I intend to do going forward…tough decisions.

I intend to meet with my doctor (regular GYN)  in exactly 2 weeks to discuss having both my ovaries & fallopian tubes removed as early as March or as late as November (I’m still deciding).

The problem is that this will put me into menopause immediately following the surgery; and I’m only 27 — some people may find my apprehension silly considering the surgery will decrease my risk significantly — but I kind of favor my body the way it is currently, free of hormone replacement therapy & hot flashes.

But, regardless — I’m finished the journey of creating a little person & am now continuing on the journey of continuing to strive for what is best for me & for my family…

A side note – I’ve chosen to breastfeed exclusively because that has proven to be effective in reducing the risk of breast cancer in women by 1/3…amazing. A woman can give life to a child & the child can give back… 

I’ll update more frequently as I continue to research the choices; hormones, natural remedies, appointments; etc.

 

Love.

 

It’s been awhile.

It’s been awhile.

So, life has been a little busy (you know, getting married and whatnot) but now that things have calmed down, I thought I’d write an update.

Basically, the last time that I was at the doctors was on March 7th for a Biopsy of my cervix (completely unrelated to BRCA-1) & I got the results back on March 15th and they were normal. Thank goodness!

However, my doctor told me on March 7th that because my ovary had a 2cm cyst on it – I’d need to schedule an ultrasound for 6 weeks (April 18th) and see how the cyst had developed; if it’s still there or has changed at all, the oncologist will be removing it. I will also be repeating my CA-125 blood test to make sure that my levels haven’t increased.

I guess the biggest news right now is that we’ve decided to try for a baby – so, Lord willing we’ll have a little one sometime in our future!

But, yeah, that’s pretty much all of the updates that I can handle.

Married life is going well & we’re optimistic about the future. Love.

My new reality

So, I have a missed call from my doctors office (since I memorized their number recently) and I listen to the voicemail: ‘Hi Ms. Booth, I was calling to discuss the results of your pelvic ultrasound with you. Please call me back.’ Immediately two things come to mind, 1. If there wasn’t anything to share, would she have said everything looked good? And 2. Of course I’ve already pressed ‘call back’.

So, I don’t hear anything Thursday – I call back on Friday. There is no way that I can go through the weekend not knowing.

Friday, my doctor is out of the office but another lady takes my call; I must have come across as desperate.

‘Hi, Ms. Booth? Yes. Your uterus looks good. Your left ovary looks nice. There is a cyst on your right ovary; about 3cm.’

I’m BRCA positive; does that matter?

‘what’s that? You have BRA-ca? Do you know if you have the ovarian mutation? We will have to do a ca-125 and see if your levels have changed; this stuff moves fast in young women, but it’s probably just a cyst that will go away.’

probably.

So, I guess this is my life – I get the test done, they see something they don’t like & they run more tests until eventually I have surgery or God forbid cancer.

But the truth is that having a baby & being a healthy mom, is the most important thing – its worth fighting for.

House

Today my appointment had a much different feel, it wasn’t very warm or friendly but more surgical and steel-like.

The waiting room was larger and there still weren’t many (only 1 other) people. I was called back quickly and the nurse wasn’t noticeably friendly, she wasn’t mean either but just average.

The doctor however, he was not average. I wish that I had taken a picture to show you. He came into the room and just sort of sat down, slid his rolley chair over, and asked me the reason for my visit. He didn’t have very good mannerisms but he wasn’t rude either, just blunt. He said things like, ‘typically, I wouldn’t see someone with your condition until they were 35 but that wouldn’t work here.’

The Dr House of gynecology.

Everything was factual and about how I need to keep track of things because seeing so many doctors, information gets lost and with me – and my age – he’s afraid that what might appear to be ‘normal’ for any other 26 year old could be a ‘bright red flag’ for me. Even the most normal test result could cause him great concern.

He said that if someone died of cancer at age 36 they probably had cancer beginning around age 33 and for someone ‘like me’ it could be possible that generationally speaking, it could happen 5 years sooner — which puts me at around 28.

So, I don’t know.

Is it selfish of me to want to have a baby? I mean, is that something that I should not even consider?

Isn’t it possible that I would be fine?

How do I sort through these things?

These are questions that I’m asking & there’s no right or wrong answer — doctors can give me the information but they can’t make me choose & sometimes, I think it would be easier if they could just tell me what to do next.

Pink

When I walked into ‘The Breast Center’ at Franklin Square yesterday, there was so much pink. The walls, flowers, decor…bathroom. Actually, the room that my consultation and where I’ll be going every 6 months was also pink, along with the ‘cape’ that I’ll be wearing.

When I walked in for my appointment, I was surprised to be the only one. The women working were exceptionally kind and almost immediately introduced me to my new best friend, their coffee maker. I was actually so nervous that I didn’t even finish my coffee. In fact, to be completely honest, I almost got sick in their bathroom.

I’m 26 and I’m seeing a specialist for breast cancer.

I don’t have breast cancer, thank goodness. But, from what I could gather, I’m high risk and it would be mandatory for me to be seen every six months, and if I want children, now is the time — my 30’s could quite realistically be ‘too late’. I’ve never before believed in those words. Now, I hold on to them like I’m holding on to a child crossing the street.

The exam went well. The doctor was exceptional. While she did my exam she chatted about her daughter and mine. We talked about the wedding while discussing my desire to have another child.

At the end, the only thing that I didn’t know is that sometimes, genetic mutations begin about 5 years sooner than the previous hereditary case & that my oncologist will be able to share more about those facts with me. I’d be 31 if that statistic becomes reality.

31.

And I’m awake at 11:44 because I have a headache.

I’m not supposed to think about; I’ll be fine. That’s what everyone tells me & although, I do believe them — I still can’t seem to sleep.