And the numerous doctor visits begin...

I woke up this morning feeling a lot more anxiety than I have in months.  Being able to write about it is helping me ease my nerves a bit.

I felt very alone after receiving my BRCA results.  Nobody else in my family had been tested for the BRCA gene, so none of them would understand what I am going through.  My mom tried to be supportive the best she can, but sometimes I felt like I was the one comforting her. 

 I began researching BRCA on the internet.  Bad idea!  I saw pictures of reconstructed breasts gone horribly wrong.  I found websites where people swear that eating a special diet will prevent you from getting cancer.  I found websites that claim there to be conspiracy theories on breast cancer research.  What I didn’t find was anything comforting or helpful.  So I called Susan G. Komen.  They must have some kind of support group out there.  That is when I was directed to the website www.facingourrisk.org (also known as FORCE).

FORCE is an organization geared towards hereditary breast and ovarian cancer.  The website was full of information… and a message board!  Suddenly, I found there were more women like me!  I spent much of the next few days quietly hanging out on the message boards and reading all of the posts.

About a week after my BRCA results were in, my husband and I went to speak with a genetic counselor at Moffitt Cancer Center to shed some light on my newfound “situation”.  They asked a lot of questions about my health and my family history.  The counselor even made a family tree to help determine where my mutation came from.  I could have told her that without the help of a tree!

The counselor explained all of the options.  She was very unbiased as to which direction I should choose.  I kept asking more questions about surveillance than surgery, so we spoke more about ways to screen for breast cancer.

At the end of our session she gave me the phone numbers to Dr. Thompson, a counselor at Moffitt who specializes in cancer, and Dr. Lancaster who runs a clinic that screens for ovarian cancer.  I figured I would give them a call.  I left my visit with the genetic counselor feeling somewhat relieved.  Maybe I don’t have to have surgery after all if I screen every six months.

Two days later my husband and I visited with Dr. Zayas, who was recommended by my OBGYN after I called them to get a referral to another breast surgeon.  We had to bring Charlie with us that day since we didn’t have a baby sitter.  That was not a good idea.  Charlie was restless and we were in the waiting room for nearly an hour.  Jason had to take Charlie out to the car to watch “Finding Nemo” while I met with the doctor.

The nurse called me back to check my temperature and blood pressure.  She led me into this small room where there was another woman having blood drawn.  This poor woman was very sickly looking and her arm was bruising from the blood being drawn.  I should not have been in that room with her.  I was trying to avoid eye contact, but couldn’t help but stare.  Why are they drawing her blood right in front of me??  I thought.

After they took my vitals, I headed back out to the waiting room.  That’s when I noticed the other patients waiting.  This wasn’t a breast surgeon’s office.  This was an oncologist’s office, and these people were here to have chemotherapy done.  I suddenly felt so out of place, and sad.  I was sad for these people.  I don’t want to be sick like that.  I don’t want Charlie to see me go through what these people are going through.  It took all I had to stare at a magazine and not look at the other people in the office.  I felt so ashamed.  I don’t have cancer, I thought.  I don’t belong here.

I was called back to see the doctor, finally.  Dr. Zayas is an older doctor with what I think was some kind of Spanish accent.  He went over all of the facts about having a BRCA1 gene mutation.  Yes, I get it, I thought.  Now please tell me that I don’t need surgery.

“I think it’s wise for you to have a preventative mastectomy,” he said.

Son of a…

Dr. Zayas hardly let me get a word in as he sputtered off statistics and this and that.  Finally, after about 40 minutes of listening to him tell me how high risk I am, he told me he will try to get a copy of my mammogram, just for his records.

As I was leaving he said, “Well, if you ever do need an oncologist, please remember me.”

Um, okay, sure.  Hope I never see you again!

On the drive home I just cried.  It was my first time really expressing my emotions over this whole BRCA thing with Jason.

“You don’t have to worry, honey,” Jason reassured me.  “You are going to be fine.  That is why we are seeing all of these doctors.  We are going to make sure that you are fine.  Pooh Bear and I love you so much.”

A few hours later I dropped Jason off at work and was going to meet Leona for a run on the trail.  On my way there I noticed that I had a missed call from Dr. Zayas.  “Please call me back as soon as possible.  I received your mammogram and would like to talk to you.”

Of course the worst thoughts went racing through my mind as I called back his office, but his office had closed for the day.  I left a message with the answering service.  15 minutes later as I was on the trail with Leona, Dr. Zayas called me back.  He told me that he received my mammogram and that I have very dense breasts (um… thanks?).  He had some information he wanted to give me regarding BRCA1 and he is going to put it in the mail.

“That’s it?” I asked.  “My mammogram looked fine to you?”

“Yes,” he said.  “I just wanted to let you know.”

Thanks for scaring me, buddy.

As I’m reminiscing over the past 10 months, I can’t help but smile at how far I’ve come.  I have just 36 days until my PBM, and that scared girl back in April is now feeling somewhat empowered.  Whenever I feel low and nervous, I just need to remind myself the road that got me here!