Thursday, December 12, 2013

Go . . .

It's 10:45 pm. I need to get up at 3:15 in order to make it to the hospital by 5:30 am. Everything is a go. I'm feeling prepared and not as nervous as at times earlier this week. I'm looking forward to having this behind me. When I post next time this will all be history. Off I go.

Wednesday, December 11, 2013

Set . . .

Nearly everything is set to go. Today is my last full day at work. Tonight I'll make one last trip to the store and do some last minute cleaning. Tomorrow I work only in the morning and then head out to Hillsboro for a pre-op appointment with Dr Cober. Then its pack my bag for the hospital and focus on all the pre-op instructions like nothing to eat or drink after midnight, bathing with special soap and insuring I'm using all freshly laundered, clothes, towels, and sheets. At this point I just want to have the surgery behind me. My anxiety level is building but it sure helps to stay busy and I have plenty to do before surgery.

Ready . . . set . . .

Tuesday, December 10, 2013

Ready . . .

It's Tuesday. Friday is surgery day. So far I'm not as anxious as I thought I would be. I've been keeping very busy. My Christmas shopping is done which is a lifetime record I'm sure. I'm as ready for Christmas as I'm going to get. I have loads of things to do at work, housekeeping tasks, office party, packing and a doctor appointment to keep me busy until I jump into bed on Thursday night.

My surgery is the first one on the schedule on Friday morning. We are supposed to arrive at Saint Vincent Hospital at 5:30. I think I'm READY.

Sunday, December 1, 2013

Party Time!

A few weeks ago, I invited a few of my favorite women to join me at a Bon Voyage Boobies party featuring champagne, breast related snacks and frontal nudity as we made a cast of my breasts. It was a girls only affair attended by both of my step-daughters, a sister, a sister-in-law, and a niece. The morning after I'm feeling pleased with myself and very glad I had the guts to throw myself a bye-bye boobs event.

It was amusing and cathartic to make a bunch of breast related snacks. Here are a few pictures.






My step-daughter Allison did most of the work on the cast and it turned out great. I'm glad to have it and look forward to having it painted. Here are a couple pictures of the cast.



When I sent the Bon Voyage Boobies invitations I wondered if it was a good idea. My sis, Lisa, told me to do it and I'm so glad I listened to her advice. It was fun and I feel so supported.

Monday, November 25, 2013

Ready?

Okay, I admit it. I'm a bit frazzled. The closer it gets to December 13th the more anxious I feel. It seems to build a little bit each day. I don't think about it all the time but I think about it more than I'd like to and even though I'm pretty sure everyone is getting tired of hearing about my surgery. I can't seem to stop myself from bringing it up and yammering about it.

It's a fact. I talk too much. Especially when I'm nervous or uncomfortable. When I was younger I used to spend hours on the phone with my friends or family members when something was bothering me. Although I don't do that so much anymore I still have a tendency to blabber away. My husband is more the silent type. I can usually tell by the look on his face that he has reached his saturation point. I'm sure glad I have this blog or my poor husband might be suffering worse than he is now.

Started a book by Johathan Herman & Teri Smieja's book "Letters to Doctors" The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition and I'm enjoying it and learning at the same time. It's pretty cool that Teri Smieja (a person I've become acquainted with on the Facebook BRAC support groups) is a published author.

Also on one of my BRCA Facebook groups I found a handy little list of things to take to the hospital and things to have at the ready when you get home. I've been picking the items up when I shop or ordering them from Amazon and squirrelling stuff away so I'll be prepared.

Yesterday I put up a pint sized Christmas Tree and strung a few lights around the living room so I could check "decorate for Christmas" off of my to do list. It's some kind of record for me to have decorated before Thanksgiving. There is just so much to do before the 13th. I still have to write a big report and a grant request at work; get ready for Christmas (shop & wrap gifts, send cards); and throw my Bon Voyage Boobies event (complete with a Paper Mache cast of "the girls"); go to 3 doctor appointments; keep the house reasonably clean; and dozens of other small things.

Okay I don't "have" to do all of this. I want to do all of this before the 13th. December seemed like a good time for surgery because it's usually slower at work. I didn't give enough thought to the reasons why it's slower at work. It's obvious now that December is crazy-busy at home and I'm realizing that all that "Christmas stuff" is more important to me than I realized. I'll give it my best shot but I may end up sending "Happy New Year" cards this year.

I'm not ready yet but I get a bit closer each day.

Saturday, November 9, 2013

How crazy is that?

There I am humming my "kick some cancer-risk-ass" theme song all confident and prepared to get this surgery from my future to my past. Just strolling down the BRAC brick road. When a silly Victoria Secret commercial reduces me to tears.

It's ridiculous. Laughable really. Even when I was "young and beautiful" I wasn't the Victoria Secret model type. As a girl, I was more of a white bread version of America Ferrera in  Real Women Have Curves. But for some reason the sight of those models in a random TV commercial hit me in the gut. Caught me off guard. It brought out a fear I had been pushing back and holding down. A fear I didn't even know I have.

It's so silly. I know I'm much more than a pair of breasts. BUT the world I live in objectifies breasts and as much as I try to tell myself I'm above all that. That perfect image of what I "should" look like is still lurking in my subconscious somewhere. How crazy is that?

Saturday, October 26, 2013

Just cut um off

I'm really doing it. How crazy is that? The mental tug of war rages on.

 "Is this really the right thing to do? What if it doesn't go well? What if I end up with serious complications? Will I ever feel normal again? Will I be sorry? What if I'm out of work for a long time?"

"No more worry about breast cancer. No more surveillance stress. Peace of mind. Bonus tummy tuck. This IS the right step for me. Once it's over I'll be so relieved."

When my mother and aunt were diagnosed with breast cancer I remember thinking. "If that ever happens to me I'll cut them both off." I knew the stress of waiting for another diagnosis would make me crazy.

When found out I'm positive for a BRCA 2 mutation I thought the same thing "just cut um off". But now that the date is set and it's really going to happen I have to say "I'm going to miss them". They might be stretch marked and a bit saggy but they're mine. I've never really wanted to change them. They fit me. They've been with me for the most intimate moments of my life. A positive part of my body image. The source of deep sexual and maternal satisfaction. I really wish I didn't have to cut them off.

I've always referred to my breasts as "the girls". They are the body part that I could count on to make me feel sexy. Even when I'm feeling too fat or not as attractive as I want to be I could always count on "the girls" to help me feel sexy.

I know I'm doing the right thing for me but it isn't as easy as "cut um off". It's so much more difficult than that.

Tuesday, October 8, 2013

Count Down to Surgery NUMBER TWO

On Sunday, while I was checking out the sweet onions at the grocery store my cell phone rang. It was Dr Cober. He called me himself to let me know the results of the scan (nice surprise). He said that my anatomy would work well for the DIEP Flap surgery. He said some anatomy is more challenging than others but it looks like I would be a pretty straight forward case.

On Monday morning Dr. Cober's scheduler, Connie, called to ask if December 6th would be a good day for me. She said she still had to confirm an operating room and contact Dr. De La Melena (my breast surgeon).

On Tuesday I got another call from Connie. My surgery date is set for Friday, December 13th. It's a good thing I'm not superstitious.

So the count down to Surgery NUMBER TWO begins.

Saturday, October 5, 2013

A Deep Desire For A DIEP Flap

Who knew I'd be almost eager to have a Preventive Bilateral Mastectomy (PBM) with DIEP Flap reconstruction. Have I lost my mind? Has my rabid internet searching regarding BRCA gene mutations pushed me over the edge?

It's so strange. To be almost excited about a surgery that will change "the girls" forever. A very extensive surgery with many risks. So odd to be hoping that the CT scan I had last week will show that there is good blood flow to my lower abdomen giving me the final "yes" verdict making me a good candidate for DIEP Flap reconstruction. So very unexpected to be anxious about getting a date for the surgery on the calendar before the end of the year.

My perspective has shifted dramatically since April when I found out I was positive for the mutation 3398del5 in BRCA2. Until just a few months before that I wasn't very concerned that I might get cancer. Even though my Mom and her sister had both had breast cancer and multiple relatives had ovarian cancer and other cancers it really wasn't something I worried about. I pushed all that out of my brain by thinking that I was really more like Dad's side of the family so I probably didn't inherit any of those cancer genes. The overwhelming emotion I felt when I got the gene test result was surprise.

As the surprise faded I became almost obsessed with finding out more about what the BRCA thing meant. I've spent hours on the internet. I'm so very thankful for my BRCA sisters and especially the information provided by FORCE. God bless each of you preventive surgery pioneers! Your willingness to share your stories online has made my journey so much easier. It has made it possible for me to make these difficult choices knowing the risks, knowing the upsides and the downsides. Knowing these things from first hand accounts of my BRCA sisters. Thank you, thank you, thank you!

After my rabid research phase I decided to take things one step at a time. The first step for me was good bye to my one lone ovary. That was 7 weeks ago. Since I was already menopausal it was truly a no brainer for me. In my experience, other than the expected menopause symptoms, it wasn't really a big deal.

For me, from day I found out I was a mutant the idea of removing "the girls" was pretty scary. Really hard to even think about at first. I decided early on that I would just take a step at a time and only move forward when I felt strong enough. In the beginning, I pictured myself ramping up surveillance and maybe never going down the PBM trail. As I read the stories of my BRCA sisters online, looked at pictures of the many reconstruction options it started to seem like something I might do someday. When I researched the DIEP Flap reconstruction I found myself thinking "that's what I want". It didn't happen overnight but it happened pretty quickly.

My internal dialog behind choosing a PBM goes like this:
"If I wait until I get cancer my options for reconstruction will probably be restricted and constrained by the need for chemo therapy, radiation treatments, and the need for lymph node removal. I saw what my Mom went through for the three years between her diagnosis and her death. I'm not sure I want to go down that road. I might not chose to have chemo and put up with the side effects and agony it brings. I might just take the time I have left and make the best of it. Mom and her sister both went through intense prolonged misery during their treatments. It worked for my aunt (so far) but it didn't work for Mom. The last three years of her life were filled with pain and sickness. I'm not sure I want to spend my last days that way. It's something I won't know until or unless it happens. Also the waiting after tests and being called back because there is a calcification or something that requires more tests is completely nerve wracking. Having experienced this already I'm sure the surveillance route will push me to PBM at some point anyway. Why not get it over with."
My thinking is basically "better safe that sorry".

To understand my choice for DIEP Flap you need to know that I've always been less than satisfied with my tummy. Even before pregnancy I wanted to hide my tummy because I thought it was my least attractive feature. This feeling got worse after my son was born because I had horrible stretch marks. And got even worse when I ended up with a horizontal abdominal surgery scar from just below my ribs, around my navel and south to my pubic bone. Ugly, ugly, ugly. I often joke that if I had 4 more nipples I'd look like a female dog. My young granddaughter once asked me if my tummy was my butt. With this background it's pretty easy to understand why the DIEP Flap reconstruction appeals to me.

In addition to the ugly tummy motivation I should mention that my weight has always fluctuated. Prior to age 40 the weight range was between 140 - 190 pounds. Post age 40 it is more like 155 - 215. Currently, I'm at about 165. I've been on a weigh rollercoaster since puberty. So if history is any indicator I think I can count on the a continuing weight fluctuation. So here is the implant dilemma. What if I get implants on the low end of the weigh rollercoaster and then gain weight? No boobs and big giant belly doesn't sound good does it? Or get implants on the high end of the rollercoaster and then loose weight. Instant porno boobs! Also not attractive. 

My internal dialog behind the desire for a DIEP Flap goes like this:
"I really, really, really don't want implants because of the weight fluctuation thing and because of the way they are attached. I get freaked out by the idea of something being implanted under my muscles. I have a tendency to produce scar tissue. I have adhesions from previous surgeries. What if I have the same issue with implants.  Love, love, love the idea of a new tummy. Love the idea that my boobs would gain and loose weight along with the rest of me. Love the idea that new boobs would age with the rest of me too. Get so excited about having a new tummy. Wouldn't it be nice to have something good along with the whole scary PBM thing?"
If I can get a DIEP Flap I'm ready to get this done. If I can't get a DIEP Flap I'm afraid I'm back at square one. I will seriously consider PBM with no reconstruction.

So there it is. A play by play of how my perspective has changed. I find out Monday if the scan shows good blood flow! I'm crossing my fingers and toes that the DIEP Flap is a go.

Wednesday, August 28, 2013

Let's Git-R-Done

All good news at my post-op appointment. The pathology report showed no cancer. Five points for me none for my inner hypochondriac. Dr. Winter said, the adhesions that had imbedded my ovary into my bowel were removed along with the small bit of the bowel that was attached to the ovary. He also said he could see why I had a bowel obstruction because the mass of adhesions could easily cause the bowel to twist itself into a knot. More good news! No ovary and as a bonus fewer adhesions and maybe even a reduced chance of bowel obstruction.

When I walked out of the doctor's office toward my car I heaved a huge sigh of relief. I hadn't even realized I was so stressed over the pathology results but knowing the outcome has given me an increased sense of wellbeing. I feel more positive and lighter somehow. This unexpected wave of relief gives me added confidence that taking the next steps toward a Prophylactic bilateral mastectomy (PBM) and DIEP reconstruction are the right thing for me to do.

I have an appointment with a plastic surgeon, Dr. Sheldon Cober on September 19th. Now I'm stressing that I won't be a candidate for DIEP reconstruction or I won't like Dr. Cober. On the DIEP FLAP Support Group on Facebook I asked if there were any others living in Oregon who would recommend their surgeon and someone mentioned Dr Cober and then said how much she loved him.  So I'm hoping I will feel the same way.

It feels good to have one surgery behind me. It's only been 12 days and I'm feeling almost normal already. In April I wouldn't have guessed that I'd be eager to move ahead with NUMBER 2 this quickly. I figured I'd take my time and maybe work toward a PBM in a couple of years. For some reason I now feel like I want to get it behind me. If my insurance approves it and I can get away from work for 6 weeks I think I'll do it sooner rather than later and just Git-R-Done

Monday, August 19, 2013

A post-surgery Post

Surgery number 1 is over and done - nice an accidental rhyme. I can't say how pleased I am to have it behind me. If you'd rather not hear about the details just stop reading now and wait for my next post.

If you are still reading this I guess you are up for at least a few gory details. The short story is ~ it all went well and I went home on Saturday around noon.

Here's the longer more detailed version for those of you who are up for a play-by-play. My sources tell me that my memory of these details will fade because that's the way anesthesia and some pain medications work. So I guess I better jot it all down before it some of it slips away.

We arrived at Portland Providence Hospital at about 5:15 am. The place is a huge maze so it took a few minutes to find the purple elevator and the surgery check-in desk. But we found it in time for my 5:30 checking and didn't wait very long before they took me into a pre-op room. At this point I started to get a little bit nervous but honestly I really wasn't as nervous as I expected to be.

The pre-op nurse, Patty, was very friendly and sweet. I went potty and then put all my clothes into a plastic bag, put on the lovely gown and socks that were provided and jumped in bed like a good girl. Denny was right with me the whole time. The anesthesiologist, Edmund Yuan, (whose name I only remember because it's on my caller ID from when he called the night before) stopped by to ask a few questions and said he'd be back in awhile to get me. Then Patty put in two IV's which is required with the robot surgeries just in case one stops working during the surgery. She also asked a lot of questions and had me sign stuff (I think). At about 7:25 or so I put on a cafeteria-lady cap and I kissed Denny good-bye.

Edmund Yuan wheeled me to the operating room. The hospital is very nice and the operating room is in the new part of the hospital which is pretty swanky and looks brand new. Once I got into the operating room I caught a glimpse of what I think was the Da Vinci Robot (it looked like pictures I've seen on the web) there were several people there. Edmund and the others put some extra tape on my IV's and then Dr. Winter came in. Somebody said, this is Julie Wehling and he lifted my cafeteria-lady cap up a bit and made a joke about how it looked like that was right. I said I hoped they could do this laparoscopically and Dr. Winter or one of the others said "we will do our very best to do it laparoscopically if we can". They asked me to move to the operating table from the gurney which I did. Things get fuzzy at this point but I think Dr. Winter looked me in the eyes and said something about taking good care of me but I wouldn't swear to that.

Next thing I remember Dr. Winter was looking me in the eyes and saying that there were no signs of cancer. Then it seemed like within a minute or two I was in my room and Dennis (Denny) was there waiting for me. I think I used to remember the face of the nurse in the recovery room and the person who wheeled me to my room on the 7th floor but that has faded already. I'm pretty sure the recovery room nurse was a woman and the person who brought me to my room was a man but I can't swear to that either. Somebody in the recovery room told me I had to spend the night but I don't remember who told me that they did the surgery laparoscopically ~ maybe in recovery ~ maybe Denny ~ I'm not sure.

So the best news is that they did it laparoscopically which means I can probably go back to work next week! Denny says the surgery took a bit less than two hours. I think I was in my room by around 11 am but it might be good to verify that will Denny. I got my information about the surgery from Denny. He talked to Dr. Winter who said that my ovary was imbedded in my bowel so it wasn't easy to get to but they were able to do it laparoscopically (Yippy). Denny said that they also took out some adhesions but I will have to ask Dr. Winter about that when I see him.

My memory of Friday is pretty fuzzy. They had me on Morphine. I do remember being in pain and feeling very nauseated. I posted stuff on facebook. I do remember talking to people on the phone and texting. Also, I remember reading that my uncle had passed away. I still haven't reacted to that emotionally (I need to go to the funeral). I felt a bit better by evening and was able to eat some dinner (Salmon & green beans). By Friday evening I was taking only Oxycodone as I needed it and took only 5mg a few times during the night and then one for the road when I went home on Saturday around noon.

I was able to shower on Saturday before I left the hospital which surprised me. There are 6 holes in my tummy that look a bit bruised but not too bad really. They glued them closed so that must be why the shower isn't a problem. I took 5mg of Oxycodone three times overnight on Saturday. My last dose was at about 2:45am on Sunday morning. I was pretty tired and queasy in the morning both Sunday and today but by noon I'm feeling better and up for taking a shower. Last night (Sunday) I was able to sleep by just taking Aleve, Motrin, and Tylenol. I'm relived to not be taking the Oxycodone. I struggle with constipation anyway so I'm thrilled to be off of any pain meds (I know, TMI but you asked for it by reading on after the first paragraph).

Considering what I've been through in the past three days I feel excellent. My sweet husband has been taking very good care of me. I'm eager to hear about the pathology report of course and I have to say that all of this has made me a bit more nervous about surgery number 2 but I'll deal with that later.

My short-term goal is to get strong enough to travel to my uncle's funeral next Saturday. If I keep feeling better at this rate I think I'll be up for it.

Thursday, August 15, 2013

Last Good-bye

The hospital paperwork says to show up for my double date with Dr. Winter and a Da Vinci Robot at 5:30 am. A wake-up-call that early in the morning will interfere with my beauty sleep but I'm almost  looking forward to it. I'm so ready for it to be over . . . done with the anticipation . . .  ready for my ovary and the surgery to be history.

I've done my homework; honestly I have. So I was surprised to learn at the pre-op appointment on Tuesday that I would have to "cleanse my colon" prior to this thing. You are probably saying "Duh" right now ~ it is abdominal surgery after all; but that was one piece of this I didn't put together until the last minute. Which didn't give me much time to worry about it. Like they say,"ignorance is bliss". So instead of worrying and dreading the prep-step I spent time clearing my work calendar so I could spend Thursday near a bathroom clearing my colon. Another advantage to this unanticipated pre-step is more time to document my journey. Aren't you proud of me finding the positive side to this? You are right, it's a bit of a stretch.

Surprisingly, at the moment (6pm on Thursday) I'm not afraid. Not nervous, really. Maybe because I won't be alone. Lots of support from everyone and Denny (my wonderful husband) is going to be with me the whole time. I feel prepared. Work tasks handled. Colon cleansed. Bag packed. Courage summoned. Prayers sent. Blog written.

Good-bye lonely little ovary!

Ready . . . set . . . go . . .

Thursday, August 8, 2013

Count Down to Surgery NUMBER ONE

That's right I've decided to have TWO surgeries.  If you are paying attention that means I've decided to go ahead with the dreaded mastectomy. I said it. It's out there. *pregnant pause* But that will be surgery NUMBER TWO so stay tuned for the gory details of that adventure.

Right now I'm focused on NUMBER 1 which is a salpingo-oophorectomy (in English that is removal of one ovary and fallopian tube) scheduled for August 16th. I had a emergency partial hysterectomy in 1979 when I was 21 years old and my son was only 4 months old. At that time, I had acute peritonitis so they took everything except my cervix and my one lonely ovary and fallopian tube which has served me well the past 34+ years.

She is getting tired anyway (my ovary) and has been sputtering and causing me to growl, sweat and loose sleep. So this is payback! No, actually I'm not looking forward to increased symptoms of the dreaded menopause but that's the price for reduced ovarian and breast cancer risk we mutants get to pay. The doctors say after NUMBER 2 they will consider low dose hormone therapy if I still want it. So I've said "Where do I sign up for that?" and I'm pushing forward.

I met breast surgeon Dr. Tammy De La Malena on August 1st. In spite of myself, I really liked her. She is probably the most personable surgeon I've ever met.  Spent a lot of time with me. Answered all my questions and showed genuine understanding and compassion. She ordered a breast MRI and is referring me to a plastic surgeon.

So those are the baby steps toward NUMBER 2. I had the MRI on Monday (August 5). Which was appropriate because August 5th is the 4th anniversary of the day breast cancer took my Mom away from us. I don't have the appointment with the plastic surgeon yet but I will have it on the calendar soon.

A week from tomorrow I lose my poor, weak, scrawny, lonely, little, shriveled-up, ovary. I'm afraid I will miss her but I have to say "Thanks for all the hormones over the years and I don't know what I would have done without you".

Thursday, June 27, 2013

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.

Monday, June 24, 2013

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.

Friday, June 21, 2013

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!

Friday, June 14, 2013

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.

Monday, June 10, 2013

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.

Sunday, June 2, 2013

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.

Tuesday, May 28, 2013

Hello Mortality

My grandmothers lived to be 88 and 93 so until just before Mom died I thought we had "good genes" and I'd probably live into my 80's or 90's.  Mom died at 71 only 3 years after she was diagnosed with breast cancer.

I was filling out the family history paperwork for a genetic counseling appointment when it hit me that our family history really didn't look that good after all.  At least 4 female relatives had died of ovarian cancer and several men had died of cancer too.  All of them on this same branch of the family tree.  Most of them living to approximately 70 years old. Seventy sounds old until you are in your 50's and realize it's less than 20 years away. 

The past few weeks have been a whirlwind of new information and way more doctor visits than I would every imagine a healthy person would have.  Probably more doctor visits than any time in my life previous to this.

As I sift through all this I am finding some good news.  One piece of good news is that the members of our family who were diagnosed with breast cancer were in their late 60's.  My mother and aunt were both diagnosed at 68.  The experts say that those of us who test positive for the BRCA2 mutation should start paying close attention about 10 years prior to the earliest diagnosis in the family. 

From what I've read and seen online many families are in a very different place with family members diagnosed in their 20's and 30's.  I am grateful for our family and at the same time so sad for those who are faced with these choices during the marriage, babies and young children phase of life.

More than anything this positive test has forced me to look my mortality in the face.  I'll be 56 next week.  My plan to live to be 90 seems to be crumbling.  Wake up, Julie!  You might not have that much time left.

Monday, May 27, 2013

Positively Positive

It's been just over a month since my cell phone rang and a sweet young genetics counselor said, in a very solemn tone "Julie, your test was positive".

It's been a month since I sat down with the Director of Clinical Cancer Genetics as she explained that because I have tested positive for a BRCA2 mutation I may have up to an 84% lifetime risk of developing breast cancer and a 27% lifetime risk of developing ovarian cancer as well as increased risks in developing a second breast cancer, pancreatic cancer and melanoma.  She offered to answer my questions and gave me referrals to two surgeons to help me review my options.

Since then I've seen several doctors and spent a lot of time with technicians and in waiting rooms.  I'd love to stop thinking about "my options" for just a few days but I can only make a few hours at a time and then I'm back to thinking about it again.  Searching the web every time I have a question.  Reading everything I can find about hereditary breast and ovarian cancer.  It feels like I'm obsessed. Going over and over the options and also worrying about my other family members and what this means to them.  Will they get the test? Will they test positive too? What if they don't get the test?  What if they do?

"Glass half empty" isn't always my reaction to things but I do need to remind myself to look for the "upside" or the "silver lining" which has been pretty difficult in these first few weeks.

It's time to prepare for a unexpected journey.  I'm still working on the first steps but already I can see a few "upsides".  Testing positive for BRCA2 is pretty negative.  But I have more information than my Mom and many other people in my family so I'm determined to stay positively positive.