Tuesday, May 29, 2012

Holding Steady

So sorry that I didn't update you all sooner! (For future reference, I update Facebook immediately after doctors appointments with the short version - so feel free to email me for my FB link.)

The doctors' appointments last week went pretty well and things seem to be holding steady right now. The ultrasound doctor (different one than last time) as much more positive from the get-go, which meant that the 6 hour wait between appointments was much less stressful than anticipated. He said that the cyst is looking much more like a peritoneal or ovarian cyst. This was great news, because last time they basically couldn't get a good read on it at all. It also looked marginally smaller - not a lot, but a little is better than nothing!

A friend came with me to this appointment - which was a huge help since I also got A LOT of information! I will give myself full credit for getting this info, I came with a list of 24 typed up questions. I handed to the nurse when I was first taken back to an exam room and by the time Avery (Dr. R's PA) came in, she had already written answers to about 3/4 of them. She explained as much as she could, then left the rest to Dr. R.

Dr. R was much more positive during this appointment as well. In many ways, nothing much has really changed - the cyst is still there, we don't really know what it is, there is still a chance at surgery - but he was just more reassuring. (That's the Dr. R that I know and love!)

We are going to try a few things in hopes that it will either a) help the cyst go away or b) at least give us a better idea of what it is. I will go back in two months for my regular CT scan and blood test, as well as another ultrasound. Until then, I'm holding steady and feeling positive.

Thanks again for everyone who follows along, sends prayers and positive thoughts, and supports me during these trying times. I know I've said it a lot - but I wouldn't be handling this half as well without each and every one of you!

I also have some way more fun blog posts in store - excited to focus on the more important things in life?!

Me too.

Thursday, May 17, 2012

Quick Update

I am just dropping in to give a few quick updates. I had my blood drawn on Monday - to test my CA-125 levels. Hopefully they will still be nice and low when I get the results tomorrow.

Tomorrow is the big day - or at least the next "big day" on the calendar. I have my follow up ultrasound appointment at 9am, then will wait around for the doctors all to write, send and read the reports. At 2:30pm I have my appointment with Dr. R to discuss all the findings and options.

I do have a friend coming with me this time - so grateful for each of the ways people have stepped up in my life, I am truly a very lucky girl. She has a copy of a list of 20+ questions that I want to make sure I get answers to before tomorrow's appointment is over. (At which point I'll probably have at least twenty new questions!) My mom will also be on the phone so that she can hear the details first hand.

I already have phone calls and tentative appointments set up with 3 different doctors for second opinions. Once I know for sure that I need one, I'll make my final decision about which one I'll actually choose.

Thank you all for all your love - I just can't say that enough.

Specific Prayers for tomorrow:

1. Please pray that the cyst is gone - COMPLETELY GONE.
2. Please pray that my CA-125 levels are still low.
3. Please pray for discretion and wisdom in my decision making.

Friday, May 4, 2012

Checking In

Well, over the last three weeks a lot of fun stuff has happened and I intend to blog about it as soon as possible. But first, I want to give you all the full story about my last doctor appointment with Dr. R. The one I briefly wrote about here but was deliberately vague about because I was too confused and overwhelmed to really discuss it.

The gist of it is that Dr. R is recommending another surgery and a hysterectomy.

It took some time, talking to various friends and family, and then some follow up calls to Dr. R's office before I felt like I understood exactly what and why this was happening. The cyst is being referred to as a "peritoneal cyst" and they aren't particularly uncommon - especially in people who have had major abdominal surgery. Initially when Dr. R walked into my room he talked about waiting 6 weeks and re-evaluating at that time. But as we continued talking, and I continued asking questions, the conversation turned to treatment options. There are lots of options to consider:

  • Leaving the cyst inside me is risky because it could contain cancerous cells.
  • Three surgeries in a year is rough on my body.
  • Removing my uterus and ovary reduces the places cancer can hide and multiply.
  • Menopause at 32 is no picnic and has a myriad of negative side effects.
  • Removing my uterus and ovary doesn't guarantee the cancer won't come back in other places.
If you are me, hearing that list above, you might be thinking - there seem to be more "cons" than "pros" to doing another surgery. In fact, the more I thought about it, the less I understood why surgery was the better option. So, I called Dr. R's office and asked for clarification.

Basically, what I was told was this:

  1. It is very rare for 32 year olds to get ovarian cancer. (Average age is 63.)
  2. When someone as young as me does have ovarian cancer, it isn't the type I have.
  3. Because my cancer has already proved to be "abnormal", Dr. R wants to be more aggressive and give me a better "outcome". (Dr talk for "live longer".)
So, that is where we are at right now. Dr. R did seem open to a longer-term "wait and see" option - meaning that after this 6 week ultrasound would be another one in about 2 months, and then after that it would become part of my quarterly CT scan/blood test follow up appointments. As long as it doesn't grow, my blood tests don't change, and/or other cysts don't appear - we could keep monitoring it indefinitely. But it doesn't sound like that is his first choice.

But the wonderful thing about Dr. R is that he understands that he isn't the only one making decisions here. He very clearly said, "this is your choice". I appreciate that he realizes that I have to be part of this decision making process. And part of the way I will make that decision is probably going to be another second opinion. Its not that I don't trust Dr. R, but once again I feel the need to have more than one "expert opinion" before I can make the "final decision".

I feel very strongly about this.
This is my life we are talking about.
And my life is about more than just how many years I get to be here on Earth.

So, here I am asking for your SPECIFIC PRAYERS again.

1. Please pray that the cyst is gone - COMPLETELY GONE - when I go in for my next ultrasound in two weeks.
2. Please pray that my CA-125 levels are still low when I have my next blood draw in about a week.
3. Please pray that I will find another doctor that I feel I can trust to give me a second opinion - I'll be looking/calling for appointments this week so that they are ready when these test results come back in a couple weeks.
4. Please pray for discretion and wisdom in my decision making.

Thank you all so much - I know I am asking for a lot here, but nothing is too big for God right? I might as well aim high! :)