Comrades

Yesterday, I attended my second FORCE face to face meeting. Several of the same women were there but it was a larger group and there were even a few women my age. It was pretty much the same format in a different location except for the camera crew who were filming part of the meeting and also interviewing some of the attendees.

I have learned a lot online and especially from several private Facebook groups designed as discussion and support forums for BRCA +, preventive surgeries, Previvors and the like. But meeting other women face to face who have dealt with this or are facing a similar path is somehow very comforting.

One of the women I met is near my age and has had the breast reconstruction surgery that I'm seriously considering (DIEP FLAP). She and I were among a few who arrived a few minutes early and were chatting prior to the meeting. She talked very positively about her experience and then asked me if  wanted to see them (the girls/her foobs). Another younger women and I followed her to a private corner of the library and she showed us. She even encouraged us to touch them. 

As strange as this encounter was it has made me much less afraid. I'm so grateful to her. 

These meetings are powerful. Such strong young women. I'm touched by their stories. Some have survived cancer, many have already completed both surgeries, nearly all have lost one or more loved one to cancer. The atmosphere of acceptance and understanding is palatable.

The next local FORCE meeting is July 15th. I plan to attend. I'm so glad I didn't let my first experience push me away. 

Just for fun here is a list of the Facebook groups I mentioned. They aren't quite the same as face to face but very helpful and supportive. I've learned a lot and would recommend them:

BRCA Sisterhood
BRCA1 or BRCA 2 Ovarian & Breast Cancer Gene
Beyond the Pink Moon
BRCA Sisterhood Of Hope
DIEP FLAP Support Group
- Previvors
Prophylactic Mastectomy

All of these groups are closed so you have to ask permission to join.

Blind date with Da Vinci Robot

It's a date. On my calendar and everything. I check in at Portland Providence on August 16th for surgery to remove my one remaining ovary and fallopian tube. Doctor Winter says that there is a 1 in 3 chance that he won't be able to complete the procedure with the robot or laparoscopically because of my previous surgery and/or the bowel obstruction.  If he has to do an open surgery I could be out of work for up to a month so I'm planning for worst case scenario and praying for a speed date with a robot. 

Check this out if you are interested in Da Vinci Robot surgery  http://www.davincisurgery.com/

It feels good to do something that moves me in a forward direction.  Three dates on the calendar now in addition to the surgery I have an appointment with a breast surgeon August 1st and a pre-op appointment August 13th.

Night sweats suck

Roasting . . . sweaty . . . get these blankets off of me . . .  doze . . . dream . . . chilly . . . cold . . .  damp sheets . . . where are the blankets? . . . shiver . . . snuggle . . . warmer . . . dozing . . . dreamy . . . muggy . . . sticky . . . off with the blankets . . . stare at the darkness . . . tossing . . . turning . . . sleepy . . . . dozy . . . what time is it? . . . squinting . . . brr . . . eww . . . damp . . . cold . . . find those blankets again . . . and so it goes all night long . . .

Clearly that lonely ovary isn't doing much good.  I guess I better make that appointment and get it out of there.

Bad Ass?

At my appointment with Dr. Winter on Tuesday I scheduled the surgery to remove my lonely ovary and fallopian tube for July 18, 2013.  It was a bold step for me and I felt like I might be moving too fast but was also satisfied with myself that I had a date on the calendar.  Then only a few hours later I got a call from the office saying that there was a problem with that date and the next available dates were in August. 

The call came while I was getting a tattoo.  My first.  Months of planning for the perfect tattoo to cover an old scar was finally happening.  I told the Dr.'s scheduler I would call her back.  It's been nearly 3 days and I still haven't called.

There are a lot of reasons not to schedule the surgery right now.  Things are crazy at work and this isn't a good time for me to be away.  In mid September a crucial coworker will have knee replacement surgery and it really wouldn't be a good idea for both of us to be gone at the same time.  I'm thinking I should put it off until December.

There are so many things to consider.  At the appointment Dr. Winter gave me more statistics regarding the surgery (I'm getting pretty tired of statistics).  Because I've had previous abdominal surgery and a history of a bowel obstruction there is a 1 in 3 chance that laparoscopic surgery won't be possible and they will have to open me up and explore (I've done that - not fun).  The big difference is recovery time.  Laparoscopic surgery will mean 2 weeks out of work.  But opening me up will mean 4 weeks out of work.  If I knew I'd be off no more than 2 weeks I'd do it this summer.  BUT when I think of waiting until December I immediately hear HER (my annoying pet hypochondriac),

By the way, it's 4:30am.  I'm sitting at the computer and alternating between flashing hot and freezing cold.  Yes, I did ask the doctor about getting my hormones back.    He said women who have had both preventive surgeries can take hormone replacement.  For a second I thought maybe I can get my bioidentical hormones back.  Then he added one of those "at your age" comments.  He said he usually recommends that women stop hormone replacement at the age of 60.  Looked a my chart and said "oh, you are only 56".  He offered me anti-depressants.  How depressing is that?

Didn't I say in my first blog post that I'd try to keep this positive?  Just so you know, I realize this isn't positive.  Here is a positive - I love my new tattoo.  It's perfectly me and covers my scar beautifully.  My tattoo artist said that I can tell people I'm a "Bad Ass" because I sat for 5 and a half hours.

Okay Bad Ass.  Schedule that surgery!

I WANT MY HORMONES BACK!

Wide awake at 2:30 in the morning.  Had the cup of tea . . . still not feeling a bit like sleeping and it's 3:45.  Tomorrow won't be much fun.  During my first visit with the oncologist-gynecologist he recommended that I stop taking my bio-identical hormones.  That was three weeks ago.

I'm sitting here at the computer "bare ass naked" and its pushing 4 am.  Unfortunately, it's not just hot flashes and insomnia I'm having the other more evil symptoms too. This is just the tip of the menopause symptoms iceberg.  I WANT MY HORMONES BACK!  At my doctor appointment on Tuesday.  I just might beg.  This is hell.

Video game medicine?

You know you are getting old when the doctors start to look like somebody your kids would hang out with and they say "Well, at your age" as if that was the explanation for everything wrong with you. I had my first pelvic ultra sound recently. It wasn't so bad really and the "good news," they say is that they were able to locate my one and only lonesome little ovary. This is a "good thing" they say, "because now we can take it out robotically". 

At my doctor's appointment next week we make plans for my next steps on this BRCA journey. Removing my one remaining ovary and fallopian tube is my preferred step one.  I've pretty much decided that I like Dr. Winter and I've been told he is very skilled at robotic surgery. Which freaks me out a bit but at the same time intrigues me.        

Robotic surgery is cutting edge, they say. I can still hear my most snarky Mom voice telling my son's that they would "never get a job playing video games". Guess I wrong about that wasn't I? More than one doctor has now looked me in the eye and said without a hint of sarcasm that oophorectomies can be done with robotic surgery.  Who knew?  

Stuck on the Fringe

Went to my first FORCE face-to-face meeting on Sunday. Met some very brave young women. All were at least a decade younger than me and most were sporting reconstructed breasts. Most had already opted to have their ovaries removed (somewhere between their late twenties and early forties).  One had faced breast cancer twice. 

Guess who the "old women" in the room was?  It isn't that easy adjusting to being viewed as a mature women or grandma. Those are the facts but it always surprises me anyway.  Just like the mirror does sometimes.  From the inside I don't feel much older than 20 something. In my mid 40's during one of my dieting efforts I realized that my "hot babe" days were over and going forward the bar I was reaching for was "attractive older women".  That's okay. It's just a different way of viewing myself and reacting to the world around me. Honestly, I'm still adjusting.

Yes, I know I am blessed.  Our family is blessed, because in recent generations our family has been spared the awful pain of losing very young women to cancer.  That doesn't change the fact that we have lost family members who weren't done living, who wanted to do more, who we all wanted to live longer than they did.  Yes, they are fortunate to have lived, had children and some even lived to see grandchildren.  They really are more fortunate than others with this mutation. 

BUT cancer still cut their lives short and it may do they same to mine. The fact that this gene mutation will abbreviate the lives of random members of my family infuriates me.  Will it be me?  Will it be one of my younger siblings.  Will it be my son, my nieces or nephews, or my cousins?

I left the FORCE meeting feeling very much on the fringe.  Being BRCA positive puts me on the fringe.  After all I don't have cancer, right?  In the BRCA community I'm also on the fringe.  I've already lived 56 years and most of the incidences of cancer in my family are in "old people" anyway so I should be grateful, right?  I'm not, at least not today.  I miss my Mom.  She lived 71 years before the mutation won.  I'm grateful she was here for 71 years and at the same time I'm angry that she's gone so much sooner than others in her generation.

Shut up, already

My 56th birthday is in two days (June 4).  I've spent many hours online since April 17th when I learned about my BRCA2 mutation. Wow there is a lot of information out there and I'm also more than a little freaked out by all of it.  As my little niece used to say "what to do? what to do?"

I'm determined to stay positive but can't help wondering what all this introspection and hyper-body awareness is doing to me.  Is this temporary?  Will I ever be able to brush off a little tummy twinge again.  Gosh I hope so. 

Until, April 17, 2013 I didn't spend any time thinking about my health or worrying about the chances of me getting cancer.  Maybe it was denial, but my view of the future was that I would live into my 80's or 90's like both of my grandmothers had.  I actually spent more time worrying about what it would be like to be a widow because my sweetie is 10 years older than me.

I was tip-toeing down the BRCA brick road until May 3rd when I was admitted to the hospital with severe abdominal pain which turned out to be a partial bowel obstruction.  I'll spare you the details.  Except to say, "it was a sh** storm", for real! 

If you were anywhere near me in early May you might have been able to hear the screeching of tires of my brain-train as it shifted down and spun around.  I'm pretty sure that's when SHE first moved in.  It must have been when I was on those pain meds.

The CT scan that found the bowel obstruction also found a mass on my adrenal gland.  "Nothing to worry about" they say.  These things are common "in people your age" they say.  It was during these conversations with doctors that I first heard HER whispering all kinds of negative crap.  I'm telling the truth, honestly I am.  A newborn hypochondriac has taken up residence in my brain.  She whispers negative scary comments in my ear all day long.  She is a huge pain in the ass.

The tests should all be back when I go to the doctor next week.  I think everything must be fine or they would have called me but SHE keeps whispering scary things that keep me awake at night.  Dang her ~ I wish I could shut her up.