Making Decisions

Well, at least now I have a plan of action and have a better idea of what lies ahead. 

Last week I heard from the breast surgical oncologist.  Dr. C called on Thursday with the biopsy results.  They came back negative, which was great news.  No additional areas were found to have cancer.  She said the 2 areas on my left that showed on the MRI but not on the ultrasound weren't a huge concern, but I would need another MRI in 6 months to watch it. 

At that point, my choice was a mastectomy or lumpectomy. 

The next morning, I met with the medical oncologist, Dr. M.  She went over the process and timeline for each choice. Right now, nothing can happen.  At least until the middle or end of December when my fertility "harvest" is done. 

Right now my boyfriend has the pleasure of giving me a shot every night while I yell and cry and flip out about how freaked out I am about needles.  Lucky him!  He thinks I should try my stomach.  I would rather alternate between my thighs, even though my left is due tonight and its still bruised from the one last Wednesday night, forget about the one on Friday.

As of Friday morning, I was weighing the pro's and con's of having a lumpectomy or mastectomy.  Per the 2 oncologists, it was basically up to me at that point and whatever I was more comfortable with.

Friday afternoon I got my genetic testing results, which changed everything.  I tested positive for BRCA-2.  That means that instead of 12-13% chance of breast cancer in my life like any other woman, I have a 60% chance.  Well, I'm here. 

For women who have had breast cancer, the risk of another breast cancer is 1% per year (or 5% in 5 years, 10% in 10 years, etc.)  For a woman like me, having breast cancer and bring BRCA positive, I have a 3% per year of developing another breast cancer (or 15% in 5 years, 30% in 10 years, 60% in 20 years!)  This link gives a ton of info:
http://www.breastcancer.org/symptoms/testing/genetic/pos_results

60% chance of doing this again in 20 years!!  I will still be under 60 then!  Seriously? 

So like I said, hearing I was BRCA-2 positive changed everything.  Immediately, I decided on a double mastectomy with immediate reconstruction.  I'm already starting to look into have my ovaries removed as well.  Since I'm doing the freezing now, I won't really need ovaries.  If I ever decide to have kids, I just need the oven part.  Ovaries won't matter then, other than pushing me into early menopause for certain.

By having a double mastectomy and having my ovaries removed, I will significantly reduce the chance of ever getting breast cancer again (in some tissue that remains, I could get in there, even WITH a double mastectomy.. chance reduced by 90% though.)

SO... that's that. 

This week I will see the breast surgical oncologist again, Dr. C.  I'll go over the details with her a bit more.  She'll refer me to a plastic surgeon she works with for the immediate reconstruction to be worked out.  I guess I have a few options, but I haven't done much research on that yet. 

I should see the plastic surgeon within the next 2 weeks.  Per Dr. C, it will be 4-5 weeks for my surgery.  Right now I'm looking at early January.  The surgery will be at either Falkner or Brigham and Woman's, depending on scheduling issues.  And depending on my reconstruction choice, I could be in the hospital for up to a week. 

After surgery, I'll be recovering at home for several weeks.  Chemo will start about 4-6 weeks after surgery, depending on how I heal.  I haven't done too much research on the chemo, but Dr. M gave me printouts of the 3 drugs she wants to put me on.  The first 2 are together.  Once every 2 weeks for 8 weeks.  I can't drive myself to those and I could be pretty sick.  After those 8 weeks are up, I start the third drug for the same 8 week schedule. 

With a surgery date of early January, 4-6 weeks out for chemo to start puts that early to mid February.  16 weeks of chemo in total.  16 WEEKS!  WTF!  That's FOUR MONTHS!  In JUNE, I'll be done with chemo.  I'm really looking forward to July.  REALLY looking forward to July. 

I asked how long it will take for my hair to start falling out.  About 2 weeks after my first chemo.  My hair will start to fall out by the end of February or beginning of March. 

That part freaks me out more than anything.  More that surgery.  More than a double mastectomy.  More than 4 months of chemo and feeling like shit for 4 months.  Losing my hair is the BIGGEST thing that freaks me out with all of this.  I don't want to lose my hair. 

People keep saying, "don't worry.  It will grow back."  That means shit to me.  I don't care that it will grow back, I don't want to lose it in the first place!  I have had long straight hair for over 10 years!  I know in April of 2000 it was already past my shoulders and close to the middle of my back.  That's the shortest it has been this friggin CENTURY!  My hair is a part of who I am.  It is a part of my identity.

It will grow back?  In the mean time?  I lose part of my identity?  How is that thought supposed to help?  How does that make me feel better?  Right now you won't have all of you, but you'll get it back at some point.  BULL SHIT!  I don't care! 

I'm not sure how I'm going to handle not having my hair.  I'm sure I am really going to freak out. 

I already decided that I'm cutting it off.  Now that I know chemo won't be starting until February, I think I might put off cutting it all.  I was going to do it around New Years.  Now?  Maybe just before chemo starts. 

As soon as it starts falling out, I told my boyfriend he needs to shave my head.  I can't handle seeing it all fall out, piece by piece.  If I'm losing it, I'm doing it on MY terms, not waiting for it to spread everywhere I go.  That would crush me. 

This week I will find out more details about surgery and what I have to do.  But at least now I have a small idea of what is going to happen.  I have a rough timeline.  I know ballpark what is going to happen and when. 

I'm still scared.  I know I'll be okay in the long run, but I'm scared of how sick I'll feel on chemo.  I'm scared more will happen, more surprises will come up.  Just of the unknown in general. 

I still don't want to be a burden on anyone.  I don't want to put anyone out or make things difficult for anyone.  Asking for help is not something that has ever been easy for me.  I've pulled my back out more times than I can count moving furniture because I didn't want to ask for help.  That was just moving furniture. 

In theory, I know this is different, but I am who I am.  Asking for help has never been easy.  I have been independent for so long, only relying on myself for things and never trusting enough to count on anyone else.  And why would I want to be an inconvenience to anyone?  This is MY thing.  No one else should have deal with it too. 

Its hard too because I know people feel uncomfortable about this, with me.  I can see it.  I can feel it.  Some people don't know how to act around me or what to say to me.  So cancer is just that elephant in the room they aren't able or willing to acknowledge. 

I'm not going to break.  If I flip out, it isn't about being asked about this.  Its everything else!  Being asked if fine, even good.  Then I know people care and are thinking of me about this whole mess.  When I don't hear a word from people, not any sort of acknowledgement after they hear, "hey Julie has cancer"... just crickets?  Okay. 

So yeah, messages, emails, and especially snail mail cards!  LOVE them!  I LOVE getting home from work and when I see my stack of mail on the counter, I see a  card for me.  It instantly lifts my spirits!  And hows this... 118 Lyman St.  Look up my FB page for my city and go to USPS.com for my zip code.  Sorry a little work, but I'm not putting my full address here! 

I guess that's it for tonight.  More news should follow this coming week.  Otherwise, THINK JULY!