Monday, March 30, 2009

I wish I could travel back in time...

It would be a hoot to see the kids as babies again.

Or experience the first time we walked into the elementary school knowing it would be our second home for the next 12 years.

Or walking up to Ben on that party boat and asking him to dance.

But weighing on my mind today would be to go back 4 years ago.

Right after the genetic counselor came to speak at her ovarian cancer support group.

I tried then, but she was hesitant.

There were so many other things she wanted to do.

She couldn't make time to get the test done.

Today I took the test. Or at least had the blood draw, it took 30 seconds.

Let's back it up a bit.

Many of you have been wondering where I have been for the last few weeks.

Besides driving the boys to California and working on the yearbook for the elementary school; I have been at doctor appointments.

Sit down and dry up, nothing that serious is going on. I hope not anyway.

The bloating and other symptoms of ovarian cancer were getting to me. I had my regular physical. The doctor knew my mom died from ovarian cancer and sent me for a pelvic ultrasound.

There is NO screening test for ovarian cancer so I knew I would start getting these ultrasounds on a regular basis.

I had my appointment on Wednesday, February 25th. The tech looked and measured, measured and looked. It seemed to me she spent a lot longer on the left ovary than the right and I was convinced she had found something.

At one point I remember saying, "What's that?"
She said, "your uterus."
I said, "I hope there isn't a baby in there, ha ha ha."

You know they can't tell you anything, so I didn't expect any news from this appointment.

Monday morning (March 2nd) I get a call from the doctor. "Your uterus is really big and shaped like Mr. Potato Head," she says. "It is probably just fibroids, but go see a gynecologist and he can advise you further."

My first available appointment is March 16th.

For the next two weeks I googled "Fibroid" and determined my abdominal girth is because I have the world's largest fibroid on record. The largest one so far was 20 pounds, mine has to be at least 25. With every beer and brownie it grows and by the time I have my appointment I am sure I am the proud momma of a 45 pound fibroid. I have also concluded that my butt looks so big because my 45 pound fibroid has pushed my other organs to the rear, literally.

The nurse weighs me in, I refrain from sharing my 45 pound fibroid theory.

I meet the doctor, he does the exam, and concludes I have Adenomyosis. Adenomyosis is a condition in which tissue that normally lines the uterus (endometrium) also grows within the muscular walls of the uterus. This is most likely to happen late in your childbearing years and after you've had children. It is different than endometriosis.

My uterus is GINORMOUS, at least 45 pounds (ok, maybe not 45 pounds but that is my story and I am sticking to it.). It is actually quite big, shaped like a gourd and should explain most of the bloating, etc.

So what do you do about it. Hmm, take birth control pills that will probably not do anything (doctor's exact words) OR do nothing OR have a hysterectomy.

Well let's explore the hysterectomy option. I am not near menopause, would need some type of estrogen replacement, heard that maybe you can get cancer from that. Could I get a tummy tuck with that?

Let's explore not having hysterectomy. Really tired of feeling like this, could end up with ovarian cancer anyway like my mom.

I have no idea what do to. I mention to the doctor my fear of ovarian cancer and if I knew Mom's was hereditary this whole decision would be a no-brainer.

The next thing I know I am on the phone making an appointment with a genetic counselor. And not just any genetic counselor, the same one I met with my mom 4 years ago.

Remember 4 years ago when she was too busy or didn't have time to get that blood drawn? If I could go back in time, I would have dragged her there or dragged the lab tech to her.

They could have gotten me in last week, but I drove the kids to California, so this morning at 8:30 I met with him.

He looked at my family history. Here is a brief look; mom had 3 sisters, one with uterine (?) cancer, one with bladder cancer, one without cancer. Her mom had three sisters, one with early onset breast cancer, another with breast cancer and one with kidney or bladder cancer.

To me it looks pretty frightening. There is a lot of cancer going around and I want to know how much I should be worrying.

He agreed that the best person to test would have been mom. If she had it we would know it was hereditary. If I am tested and do not have it, it could still be hereditary but I may not have the gene, but my sister could. Or my cousin or my aunt.

So I am going to be a little mad at my mom for not taking the 30 seconds to get the blood draw. I haven't been mad at her for a long time and I think it was selfish of her not to do this test so we could know what else she passed on, besides her love of volunteering and lack of cooking skills.

In the end, after the hour long counseling portion of the appointment, I decided to get the blood draw. If the insurance approves the testing our portion will still be significant but I feel like I have to know, one way or another.

I should know by Friday if the insurance will cover the test. If they do, I could know results within two weeks.

If it is positive, like I said, no-brainer hysterectomy. If is it negative, bigger decision. Friends and family who have had one say, no big deal do it. Those who haven't say, try to stick it out until menopause.

The cure for andenomyosis is a hysterectomy or menopause.

So, that is the long story of where I have been, and I guess of where I am going.

Yes, I will keep everyone posted. And yes, I know you are concerned about the outcome of the test.

But what I want to know is...

how much do you think my uterus weighs?

I just want comments with guesses and then if I decide to get the hysterectomy maybe I can get the doctor to weigh it for me and have a winner posted on the blog. Hmm, what would be a good prize for that?

You really have to have a sense of humor about these things.

Here is another tidbit of info, when the doctor did the exam he actually said, "Wow, that is a big uterus." He is a professional and he thinks it is big too. Apparently the uterus should end around the pelvic bone, mine goes to almost the belly button.

Have fun guessing the size. And no, I will not be posting pictures of my abdominal girth.


Danielle (Life with the Hewitt Family) said...

You have been going through a lot! You have such a wonderful attitude about all of this and I will be praying that things work out they way you need them on to my guess...Now you have me thinking about doing some research, like if someone has a hysterectomy did they notice any weight loss? Just kidding...kind of. Anyway my guess 12.63586 lbs.

Michele Renee said...

I'm sorry to hear about your mom and these tests you're taking. It's a good reminder for my past due yearly check up. I am a mom of 3 boys ages 12, 11, and 8. Question--if you just have the uterus removed and keep the ovaries do you still need hormones? My uterus feels big and bloaty but I think it's because things really slow down at age 46. Anyway I'm guessing the weight to be 7 lbs.

MeKimka said...

I think it's our generation that is more able to handle the outcome of "further testing". I don't think my Mom would ever get around to it either. So be mad at her, (it probably does feel good)you know she would do something to get you over it in a minute anyway. I'm always here for you my dear friend, no matter what. And I hope it doesn't happen but I'll go with 4 lbs. (brownies and beer are not digested in the uterus, nice try)

Elaine A. said...

Wow, that's a lot to take in. I will pray that the best decision is easy to make... does that make sense?

I'm guessing your uterus weighs about 10 pounds.

Karen @Snakes-Snails-Puppydogtails said...

so with 3 boys I'd say that has to be at least 10 pounds per child right.. That would help you take off 30 pounds .... sounds good to me. No really I'll go with 11.7 pounds.. just for fun!
Praying for you!

Anonymous said...

Definition of a hysterectomy - God's gift to women!

I had one 6 years ago! whoot whoot!

Best choice I have ever made besides the one to marry my smokin' hot hunka hunka burnin love Nels!