Life's a Game Played by Everyone, and Love is the Prize

While in Michigan for a friend's wedding, I received some pretty awesome news.

I had made up my mind, psyched myself up, that no matter what the results of my CA-125 blood test results turn out to be, it doesn't mean I have ovarian cancer. Either our little birth control diagnostic test will have worked, or the test results will still be high.  If the results are still high, we'll just have to do some more testing. No big deal. Just a new adventure for me. This number was not going to be the final be all, say all, of an ovarian cancer diagnosis.

When my cell phone rang I recognized the number immediately. I took a deep breath and answered the phone. The usual nurse I speak to, Pia, was on the other end. She started the call off with, "I just wanted to call you with some good news!" I think I was holding my breath because I exhaled a great sigh of relief. She told me that my CA-125 count had fallen down to the normal range! I told her how happy and excited I was to hear this news. She said my doctor may want me to take another test in a couple of months, but he didn't specify. He just wanted her to call me immediately. She then wished me a happy upcoming wedding day (he had written down the day in my chart) and we hung up.

Thank god this test was a success! Taking the birth control was worth it! Even though I bled for an entire month, was a bloated, moody mess - it was all worth it! Of course I stopped the birth control immediately after the one month was up. Being on it was such a nightmare. Ugh! But it helped me pass my test, and that's all that matters.


Now I can focus on an entirely different, new path in my life. Marriage! On October 12th, I am getting married and not the tiniest inkling of health concerns will be on my mind. I will start my married life with a clean bill of health, marrying my man who loves me for who I am - fake boobs, scars, and all the rest.

- J.

Vacation and Birth Control

It's been awhile my loyal blog readers and I apologize. You'll forgive me though when you hear what I've been up to. I was on a month long vacation. A real vacation! Not a cancer related one. My vacation consisted of relaxing, the Yuengling brewery, the PA Grand Canyon (yes that exists), wedding planning, and a road trip down to Disney for quite the magical time.

Of course, sprinkled within all these fun activities were a couple of doctor appointments. My first one was my yearly check up with my breast surgeon. She is still very pleased with how everything looks and she said everything felt fine. We discussed future plans and she was a little concerned to hear about my high CA-125 test results.

Ah, yes, the CA-125... I took the second blood test as prescribed by my OBGYN. I had an appointment with him on July 30th. The second test came back higher than the first. Ugh. My first score was a 47 and the second 53. He is concerned because the score went up but he is still convinced it is my endometriosis because my ultrasound came back clean (woo). He wants to do a diagnostic test on me. He wants me to take birth control, take the blood test again, and hope that the test results are lower. The theory is that the birth control will calm everything down.

Now, if you know me I've ademently spoken out against taken birth control. I didn't want a single extra ounce of estrogen in this delicate body of mine. Even when OBGYN after OBGYN recommended birth control for my horrible cramps I always declined. Did they even read the family history section on my chart? I stand by my teenage self and still believe that I made the right decision all these years. But this time things are different. I now need to worry about my ovaries. I no longer have breasts, and ovaries react differently to birth control, so I agreed to take it for diagnostic purposes only. It is also the lowest dose of estrogen and only for a short time.

Well, I don't know how you ladies do it! I started my first pill on the first day of my period as prescribed by my doctor (which was when I was in Disney, heh). Now it's been two weeks and my period hasn't stopped! Ack!! It's much lighter some days but is always there. I also have awful cramps and bloating like crazy. If just a low dose of estrogen does this to me I simply can't! My body is rebelling against me and I don't blame it, I am messing with its carefully crafted hormonal balance. I called my doctor on Friday to make sure these side effects were normal. He said yes and it usually takes three months for your body to become accustomed to it. I told him no way, I don't have three months, I've got an October wedding to plan! I agreed to finish the pack, take the blood test, and hope that it was indeed my endometriosis causing the high results, otherwise we have to find a new diagnostic plan.

Sigh, the trials and tribulations of being a woman.

- J.

"Let's get this show on the road!" said my Ovaries

Nothing says "Time to wake up!!" like an early morning chat about one's ovaries and future babies!!

I finally got around to calling Dr. Blackwood the other day about my ONGYN's recommendation to do at least a low estrogen birth control pill. Remember THIS post from back in November? Yeah, I'm a procrastinator, don't even start. Dr. Blackwood called me back last night and left me a voicemail. She basically said she doesn't have the answer I am looking for. She said the birth control would be good for my ovaries, but in regards to the extra hormones there's no real concrete evidence that it helps or hurts. Things get especially dicey with my BRCA2 positive gene. She recommended that I call my Onc.

To be honest I don't know why I even bothered calling when I had already (sorta) made up my mind. I guess I was looking for reassurance. I am pretty sure I am going to do none of the recommendations from my OBGYN and just hope for the best. I think he will be a bit disappointed to hear that because he wants me to be proactive and I understand. It's just that two of the options are so extreme and the least aggressive option...well, I've never, ever wanted to take birth control. I never felt comfortable knowing there would be extra hormones in my body. What if I was taking birth control during the time my invasive micropapillary carcinoma was growing inside me? Would it still have been just 1mm? Would my lymph nodes still have been clear? I don't know the answers but I feel confident in my no birth control policy. I've been to many different OBGYN's and all but one tried to push the pill on me. I'm proud that I stood my ground!

But has the game changed now? I no longer have my breasts. It's ovary time! Do I now focus primarily on my ovaries? I am just so scared to put any bit of extra estrogen in my body. It just doesn't feel right. And what if I start taking the birth control in May? What if I want to have a baby in a year or so? It seems pointless to go on it for a year! I don't know...

And don't get me started about babies. Thanks to my health problems I feel pressured to have babies NOW so I can get everything down there removed before it decides to turn against me. It's all so overwhelming when I think about it. Kevin said all will be ok. This is the hand I was dealt and we will do what we have to do. And really, is one ever completely "ready" for children? At 30 I sure as hell don't feel ready but my ovaries are definitely ready to get this show on the road!!

- J.

PS Dr. Blackwood's office just called again. Ha. I am getting my pathology report faxed over to me so I can go through it with a fine toothed comb. I need to be sure I am making the best decision for my health. Oofta. Someone tell me I am doing everything right!!

Reporting Back

My new OBGYN was very nice and my appointment went rather smoothly. It was an intense appointment though and he gave me a lot to think about.  He seems very concerned about my ovaries. He wants to be proactive with them and he gave me three different options to ponder. None of them really appeal to me but I will do more research and acquire more details.

• The first option is the least invasive. He wants me to start birth control pills. Now this seems like a bad idea because why would I want to add more estrogen in my body? It seems counter productive. Especially since Dr. Blackwood wanted me to be very aware of my soy consumption. And that's just estrogen in soy! He said he would put me on a low low dose of estrogen. About 10mg. I have read that women who take birth control for 5+ years lower their risk of ovarian cancer, but what if I have rogue breast cancer cells floating through my body?! I certainly don't want to feed them estrogen!
• The second option is only based on theory. I'm sorry, I love research, but I am not doing something to my body based on theory alone. That theory is that ovarian cancer does not actually start in the ovary. Some are saying that the cancer starts on the little phalanges at the end of Fallopian tubes. It then presses up against the ovary and the tumor grows in to it. Some women are having just their Fallopian tubes removed.
• The third option is removing both the ovaries and the Fallopian tubes.

Now the last two options would require that I freeze eggs or embryos and obviously consult with an IVF clinic. At this moment in time those two options seem just a bit extreme to me.

And to be honest this whole ovaries thing angers me. I'm 30! I want to have kids, but not yet. I hate that I feel pressured to have kids because my ovaries may be little ticking time bombs. I have stuff I need to do. I want to be financially stable. I don't want to rush anything just because something may or may not happen. As pointed out to me. When my mom and aunt Jeanne had their ovaries removed there was no sign of cancer, so that leaves me hopeful.

This whole little "but this isn't my plan" rant makes me think of a quote by Joseph Campbell I saw posted on a blog, "We must be willing to let go of the life we have planned, so as to have the life that is waiting for us."

For now I am waiting for test results to come back. I also need to get an ultrasound done and a couple more tests. I will see him again in six months and by then I should hopefully be well versed in ovaries and ovarian cancer.

- J.