Monday, September 17, 2012

Live Your Life

9/17/2012 I finally made it to MD Anderson

Finally I got to Houston!  The roads that lead to MDA was rather bumpy.  I had a difficult time having my case manager return my calls.  Okay, the original case manager never returned my call after several voice messages.  It got to the point that MDA closed my case because they never heard back from me.  So you can see how upset I was.  Thankfully I was not a newly diagnosed patient but was appalled that a world renown center would treat a cancer patient like that.  

Anyway, I got my case reopened thanks to an email to my oncology nurse.  I was able to switch case managers and to tell them my story so it didn't happen to anyone after me.  Needless to say, things went smoothly from that point on.  So smoothly that I've been highly impressed by MDA besides that incident.

I got to spend the weekend with Blanca.  I didn't get in until that afternoon because there was a benefit for one of our ladies that passed last month.  The benefit was amazing and raised about $4000.  I had a great time hanging out and catching up with Blanca and her daughter Izzy who is cute as a button.

Fast forward to this morning.  I got to MDA early to make sure I found it correctly.  Besides, I haven't met my deductible yet for this year so this visit was going to cost me about $500 so I didn't want to be late for it!  The directions they gave me was great and so was my GPS.  Information center was great and before I knew it I arrived!  Some photos as proof.
Fancy, this is how an actual cancer center works...especially a world renown  one.
From start of registration to the nurse that walked me out was an amazing experience.  Everyone was courteous and prompt.  It was only Dr. Litton the breast, fertility and genetics specialist that I had to wait for about ten minutes.  Of course, I had to undress from the waist up and opening to the front.  Robe is below and so is the funny story of the sign I forgot to snap a photo of:

I forgot to take the photo of a sign to NOT take home the robes but they can be purchased to  take home on level 2.  Not sure why someone would want a souvenir of a robe from a cancer center but what do I know?  It was soft enough but still...
Anyway, I met with the nurse and went over my history as well as why I made my way to MDA after almost 7 years of diagnosis.  Dr. Litton came in with a newbie and started spewing my stats and everything I went over with the nurse without ever looking at notes or my chart of my files.  Damn!  I was impressed!  She was also warm and compassionate and definitely knew her stuff.

In a nut shell:

She doesn't think I am BRCA+ but would like me to consider the BART or P53 test.  I've heard of P53 and remember asking Dr. H about it long time ago but forgot what was said about it.  Anyway, she would rather me do the P53 over BART since I'm HER2+ and BRCA is usually TNBC.

Studies shows it's safe for breast cancer patients and ER+ ladies to have babies 2-4 years after treatment.  (Or may have been diagnosis.  Darn, forgot.  But regardless I'll fall into that guidelines.)  Of course there are not guarantees but she doesn't see why I shouldn't if I wanted to have a baby.

She does not believe in follow up scans or tumor markers.  In my case, she would want to run a complete breast and abdomen/pelvic CT scan to ensure there isn't a micrometasis anywhere prior to getting pregnant.  I told her this was not immediate since I haven't established my life partner so she said to have it done before I was serious about this.  Of course this is pending P53 results.

She feels 5 yrs of Tamoxifen is enough and that no more is needed nor is an oopherectomy!

I have a small window of opportunity where my eggs would be viable and producing but we know once women hit 30's that it drops significantly and even more so since I had chemo.  So my initial thinking that I have up to 5 years might be wrong.  We didn't establish the numbers in years but I am probably producing less eggs that an average 35 year old.

My body is forever changed.  I need to consume about 75% of the calories I consumed prior to treatment and for the rest of my life.  I guess I shouldn't beat myself over the head over those last 10 lbs.

Basically she answer ALL of my questions and would have answer more if I thought of more.  I seriously was aiming for 25 minutes with her.  I was in there with her for about 45 minutes.  I was with the nurse for about 10-15 minutes.  Needless to stay, I'm a happy camper.

As Dr. Litton left the room she told me, "Live your life."  With that, I'm back in Austin and am enjoying a cocktail.  I have an appointment with Dr. H next Monday to discuss everything and see how much this P53 test costs.  If that is all clear and my CT scans are clear and I find my partner in crime I have a green light.  I also feel good about keeping my ovaries at this point in time unless more data comes out.

Guess it's time for me to LIVE MY LIFE!  Cheers! 

1 comment:

Unknown said...

This is WONDERFUL! Hurry up and find your life partner so that our babies can grow up together! I'm on hiatus until at least January (and age 36), but as SOON as we get the okay. It's ON!