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 7^th for a Biopsy of my cervix (completely unrelated to BRCA-1) & I got the results back on March 15^th and they were normal. Thank goodness!

However, my doctor told me on March 7^th that because my ovary had a 2cm cyst on it – I’d need to schedule an ultrasound for 6 weeks (April 18^th) 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.

Prayer

January 29th (the night before my GYN appointment) I had a dream, in the dream, I could see a group of women praying over me and various parts of my body — it was unlike anything that I’ve seen before — and, I was sort of floating above and just watching… I said to God, who happened to be with me, sitting beside me, “Why are they doing that?” and He said, “Just trust Me and know, there is a greater purpose in all of this.”

And, then, I woke up — I could only remember a few, very specific women from my dream. But, I knew, going into my appointment that the news was going to be less than desired.

So, out of all of the emotions that I felt that day, surprise was not one of them. Actually, I think that I was surprised by the exact news, but I was not surprised that the news wasn’t good.

A couple of days after my diagnosis, I received an e-mail, one of the woman from my dream shared her story with me, and said that she had been praying for me all of that day.

And, then, another woman reached out to me… and another… one woman shared with me that God has woken her up, out of her sleep, 3 days in a row, praying for me… and at the same time, I received a text message from a woman friend of mine, “I’m on my knees tonight” praying for me.

I guess the reason that I’m sharing is because — faith changes things. Medical professionals will not deny that — and, I’m believing that as long as God is going out of His way to provide comfort to me (and even if He weren’t, probably) I would still trust that He hears and that He understands.

Also, if you’re one of the woman praying for me, Thank You! God will surely bless you for your faithfulness, I believe that! Love.

Awkward

Okay, so, you know that feeling that you get when you’re the only one who knows a secret? It’s like, you just can’t share it but you really want someone to know and understand.

That’s where I am.

It feels weird. This topic. It’s too hard to talk about casually and it’s too deep for most people to truly get.

So, I don’t talk about it, or at least, I try not to. I don’t want people to think that I’m weird, so I don’t say anything. But at the same time, when I don’t say anything, and then, I finally can’t not say anything else, it comes out in overwhelming globs, where people who happen to be around me and are lucky enough to take part of the listening, they don’t know what to say — so they don’t say anything.

And then, I feel even more weird. Like, what is wrong with me? Why am I letting this consume me and how can I stop?

I was doing okay. Then, I opened the mail from The Breast Center and it was a packet full of BRCA mutation information. Facts, information, what does it mean? What should I do? You know, the basics. I guess they want me to be informed before I come to my appointment, that makes sense.

The only problem is, I learned that my risk is actually the greatest in my 30′s and early 40′s — that’s not really what I understood when my doctor said ‘before 70′; she didn’t clarify that the greatest risk for cancer is before menopause.

Something else that scared me, a lot, was the part that said my risk for cervical cancer is actually increased also, who knew.

So, I’m just hanging out in the airport, trying to look like I’m okay when I really want to just burst into tears.

I guess, we all have our days, right?

So, take that.

First of all, I’m overwhelmed by the response that I’ve received, so far, from this blog — so Thank You for the support & encouragement.

I must admit, in my previous life, I was a complete emotional shopper… That’s the route that I would take to make myself feel better, about any situation; if you knew me then, well, you know exactly what I’m talking about.

So, on Friday, after my appointments, I went shopping — an emotional reaction to a depressing and what seemed to be an emotional weak time for me. I mean, it’s not every day that you have your dignity thrown out the window & even now, I’m in tears because it really just sucks, if I’m honest, it sucks that I spent 5 hours of my life in gowns, having people see parts of me that I prefer to keep covered.

I don’t like feeling this way. I don’t like feeling like these people have more control over my body than I do, if that makes sense.

If I choose health & if I choose to seek medical provision, which I do, then I know, I’m going to be put in situations that aren’t always comfortable, and that’s certainly a challenge that I’m willing to face — but that does NOT mean that I have to like it. And, I don’t. At all.

So, I chose the familiar, I chose to claim what is mine by shopping, for BRA’S, because, I plan on wearing them, for-ever.

So, take that, BRCA-1.