Gettin' back on that Horse!

So, dating after having a hysterectomy is a little trickier than I thought. I didn't realize it would be so difficult to feel "normal" again.

I have my last follow up with the doc tomorrow, and I'm pretty sure she is going to give me the green light to go ahead and resume my regular activities...such as working out.  The time has come where I'm supposed to get back to my "normal" life...only,  I can't really forget about all that's happened to me....got the hot flashes to remind me, a few hundred times a day!

I was on a date last week, having dinner....and I must have had like 4 hot flashes in the 2 hours I was there. It's a little embarassing when you go from cool as a breeze to oh my God I am bursting into flames internally, in like 3 seconds flat.   And did I mention the sweat?  yes....I am usually covered in sweat by the time my hot flash has passed. 

I wondered what he must have been thinking....

"Wow I must make her really nervous!!...score!"     I thought it was kinder to let him go ahead and think that. Plus I wasn't ready to get into the story that led to my oh so persistant hot flashes.

I hardly know how to dress anymore.....I try to wear light layers, but then I'm freezing. So I put on a sweater, and then I'm boiling.  So my day goes a little something like this: Put on the sweater, take off the sweater....put on the sweater, take off the sweater...put on the sweater...take off the sweater. Well you get the idea!

Basically, resuming my normal activities...such as dating....has turned out to be more complex than I thought. The thing is, I have to try and get my life back at some point...and I think that point is now.

As hard as it is to move forward from all of this, I have to do it....and I know it'll get easier in time. I guess right now it just feels emotional.

It's not so bad...

I woke up this morning feeling a little sorry for myself.  I didn't sleep very well last night, between the constant hot flashes and the terrible headaches. The hot flashes are because of the menopause....the headaches...well I'm still trying to figure those out.

I was all ready to feel sad today, and to mourn the things that I lost.....and to be upset at the fact that I have had to face challanges that no one my age really should.

But God has a funny way of bringing you perspective when you're in need for it....He's annoying that way.....so no sulking for me.

I found this blog in my inbox this morning, from Sue Friedman, the Executive Director of FORCE....where she shares her story of getting cancer, being diagnosed BLOWS2 positive. It reminded me how we can always turn something really terrible into a positive. It also reminded me that there are some really incredible and strong women out there.....and I'd like nothing more than to be one of them.

Take a read
http://facingourrisk.wordpress.com/2012/10/31/a-healing-light-from-within/

Would you like to take me and my BRCA out to dinner?

How do you tell a guy that you have BRCA? (aka BLOWS1)

I have spoken to a fair share of women who share the misfortune of having this gene; women who have opted to do  preventative surgeries, such as mastectomies, and histerectomies and the works! However, I realized today that none of them were single!   hmmmm.....

So what do you do when you're a single (ridiculously beautiful...hehe) woman, have had multiple surgeries...have lost your real breasts, your ability to have children....and you want to start dating??

Clearly, this is not something you want to tell a guy during your first date, but it is a huge part of who you are, and your history/past experiences, so how can you not talk about it at some point?
A lot of questions come to mind when you're dating someone, such as: "When do I tell him?", "How do I bring it up", "How do I explain what it is without making it sound like I'm a ticking time bomb that could go off at any minute!???"

And of course there is always the struggle of making sure you stop yourself from blurting it out casually over dinner. I can just see it now.....

Guy: "can you pass the bread please?"
Me: "oh of course, I have no ovaries!"

Then of course, there is the one question that we will always be asking ourselves, "Will he not want to be with me because of all of this?"

I have asked myself that question many times in the last two years. Sometimes, I foresaw a negative response, and other times a positive one.  The thing is that you never really know how guys are going to react to this, and that doesn't only go for guys....it goes for people in general.

But life has to go on, at the end of the day...you're still a woman, and brca is a part of you...and all the surgeries and experiences are a part of you too, and they're not all bad. I am a big believer that someone should accept you for you....surgeries and all.  and if they don't...well then they can just take a flying leap into something!

So, I don't have the details of how the "BRCA conversation" is going to go, I've only ever told one guy that I was seeing "briefly"....and that was pre-histerectomy, so the next time I talk about it...it'll be a different conversation.

If it's any consolation....the first guy seemed more concerned about where we were going to dinner that night, than the fact that I have fake boobs.  Guys are very simple creatures ladies...and sometimes it works in our favor.

On your mark...get set...go!

Today I'm starting a little project I like to call "Rebuilding my body!".

I'm starting to feel like my body really hates me. And why shouldn't it?  after all that I've put it through the last couple years....I've had it cut open, stitched up, cut open again, stitched up again. I've bruised it, and medicated it to no end....and I haven't exactly been supplying it the correct supplemental and nutritional support. (is supplemental a word? ....well I'm making it one!)

The truth is that even though I feel great emotionally....now that all these surgeries and medical experiments are behind me, I still feel weak phisically. My recovery from this latest surgery has been amazing....very fast. However, these last two years have taken it's toll on my overall strength and endurance.

Being fit has always been very important to me, and it's important to my body too....without sounding like a personal trainer/motivational speaker...not taking care of your body is something that will come back and bite you in the ass at a later time...True Dat!

I'm only 3 weeks post-op, so I can't begin a heavy duty work out regiment yet.....but I can at least get my body used to moving around again.

My first stop after work today is the gym......and I'm going to start off just by walking on the treadmill for maybe  a mile or two.  I guess I'll have to read my body and stop when/if it feels like too much.

I was with friends over the weekend, who ran a marathon this past Sunday....and I'd be lieing if I said it didn't make me a little sad that running a marathon would be sooooo "not possible" for me right now.  Not that I've actually ever wanted to run a marathon....as a matter of fact, I really dislike running all together....but that's not the point.

It might be a slow process.....but I'm determined to getting my body back up to snuff!  Stay tuned......

No more house arrest

Today marks 16 days post op, and I still feel great!   That's the good news.....the bad news is...I still can't work out for another 5 weeks. Or so my doc says.....

Where's a good loop hole when you need one! But I think I've found a way to get me back into the gym, with her approval!  She did mention that I would be able to walk, in fact...she said that I SHOULD walk, so I am taking that as a green light to visit my old friend "The Treadmill".

I stopped in at they gym yesterday after work, and got myself a monthly membership until I am ready to resume my "hard core" training. So now I can just go in and walk on the treadmill....and maybe work my way up to a stationary bike and...dare I say..... the possibility of an eliptical trainer!

After my first surgery (mastectomy with DIEP reconstruction) I had to check in with the doctor every other week.....it was a 6 week recovery. She would always ask me: "Do you have any questions?"    and I would say "Yes! can I start boxing again".    By the end of the 6 weeks she said that all she could think of anymore, when seeing my name on her schedule, is an image of me punching people. nice!

Going back to work this week has been great, feels good to be able to be back this quickly, and to get back into my routine. I'm not the best patient.

Recovery has been going really well, though the hot flashes are I think increasing. It's not too bad, I know they will calm down in time, but right now they're powering through at full force! I go from normal, to warm, to sweating hot, to cold in about 10 seconds. Clearly, my body temperature is a little off.  I'm also showering way more, because I'm sweating a whole lot!...I know, very attractive.

"The Cavalry Has Arrived"

I read an interesting blog yesterday, written by Sue Friedman.....who is the Executive Director of FORCE.  I should probably explain what FORCE is...

It stands for Facing Our Risk of Cancer Empowered    www.facingourrisk.org

I was originally told about FORCE by my genetic counselor, two years ago, when I found out I was a carrier of the BLOWS1 gene...otherwise known as BRCA1.  Yes that's right, I have a genetic counselor!   Before they allow you to take the blood test, that will determine weather you carry the gene or not, they schedule you for a session with a counselor, basically to ensure that you really understand what BRCA is...and let's face it....to make sure you are mentally stable enough to deal with the results.  I suppose not everyone takes the news very well.

My results were immediately followed by a rain storm of pamphlets......self help stuff...local support groups and so on. Among them was a pamphlet about FORCE, which is a support network for women who have the BRCA gene, and have to face the decisions and struggles that come with that.

There are articles, message boards, blogs, links, seminars, groups....anything you could think of. But most importantly, it has other women who are in the same shoes!

I believe my doc said it best: "People can be supportive, they can simpathyze with you....but they will never truly understand how you feel or what you are going through....because they are not you".

Well the doc was right, and in the last two years....though I have been blessed with love and support by so many loved ones, I have also encountered some who didn't agree with my choices, or some who didn't understand the seriousness of the BRCA gene, and.....my personal favorite.....some who just felt I was overreacting to the whole thing. 

When that happened, FORCE provided me with an outlet.....full of other women that were basically "me".....well you know what I mean.

FORCE has faced it's challenges and hardships.....however, our community and overall knowledge of the seriousness of this gene has also come a long way.

You should check out Sue's blog  http://facingourrisk.wordpress.com/2012/10/15/the-cavalry-has-arrived/

Put down that remote!

You know you're watching way too much Daytime tv when you start having dreams about General Hospital!

But thank God, I am going back to work on Monday. I am 10 days post-op, and I feel great. The pain in my stomach was pretty severe the first 4 days, but then it started weaning down...and now it's almost all gone. I feel a little pain whenever I cough really hard, or laugh really hard.....so of course, my brother-in-law is constantly trying to make me laugh.  I am contemplating punching him in the stomach next time he does it...hmmmm....

Went to see the doc for my post-op check up, and she said everything looks good. The results from the lab came in, and they confirmed that the tumor was bening...and was in fact endometriosis.
Bottom line....not a cancer cell in sight...so praise God!  She set me up with a follow up appointment in 5 weeks, and took back the "pre-surgical preparations" dvd she had given me before the surgery. As I handed it to her....I thought "whoooo hoooooo.....I never want to see that freaking thing again!!".
(though I tried to hold back my excitement, and urge to chuck the dvd out the window)

In regards to side effects....I do seem to get tired faster than usual, and yes...I am getting hot flashes! They're not all that bad....I'm maybe getting 6 to 7 a day, but they only last a few seconds, and should calm down with time.

I started taking a Coral Calcium supplement, as well as a Raw Vitamin D3 supplement....for bone health and strength....and will be monitoring any further side effects as they come.

In all honesty, I feel like a huge burden has been lifted off of my shoulders....and I don't miss my ovaries one little bit. I'm not saying I won't have my "sad" moments....but what I know I won't have, are any "regret" moments.

Read all about it....Read all about it!

I think that giving bad news is just as bad as getting bad news.

I watch this show, called Parenthood, and on this week's episode one of the characters had to tell her whole family that she was recently diagnosed with breast cancer. The episode ended with a close up of the reactions from each family member...and you guessed it....among them were: shock, horror, fear, pity, sadness, and the oldest boy in the band....tears.

Now I know it's just a tv show and all, but it reminded me of the looks I've seen on my friends and family's faces, when I've had to deliver the bad news. First, there was the time I had to tell them I was BRCA1 positive; then there was the time I shared I would be having a mastectomy; then (and most recent) the tumor that was found in my ovaries, and the possibility that it could be malignant; and lastly, the decision I made...to have a hysterectomy and oophrectomy.

As I watched the episode, I thought to myself......"At least this is something I will never have to do....look at my family and friends and say...I have cancer."  Although I know that no one is ever 100% safe from it....my chances of getting ovarian cancer have now decreased from 50%, to less than 5%....and to me, that makes all the difference in the world.

I've had to give a lot of bad news in the last 2 years....but I never wanted to look at my loved ones and say that the worst has happened. It's a heartbreak.....and who wants to be a heartbreaker anyway ?!...not me.

I did what I did....for them as much as for me. One week post-surgery, and I still feel I have made the right decision for me, and for my family...and now I can move on. I don't know what my future holds....but one thing I do know...I'm not afraid because God's got this!

Dr. Jekyll and "Ms. Hyde"..

The madness started at about 7:05 am...that's when I woke up.  
I immediately felt awkward not waking up in the same room I've been waking up in for the last 4 years.....but I figured that the "new house/move-in" jitters are pretty normal, so I held it together ok.

I found some sweat pants and a tshirt on my bed (my entire wardrobe is in the trunk of my car).....and went downstairs.
My hysteria got a bit more intense as I paced from room to room...making my way around the clutter....It all just felt so strange, and new...and I was out of place.

I started playing my guitar...becuase that usually relaxes me....and sure, it worked for a bit.

The madness really kicked into high gear around 9:15 am....when my sister came downstairs and I started exploding tears like a baby...guitar still in hand.

I'm not even sure weather it was the move, or the fact that I'm still in pain..... or the fact that I have no cable (essential to my well being!) Then again, it might have been a combination of all of it.

In the last 4 weeks I have: gotten a call from the doctor saying they found a tumor in my ovaries, that may or may not be malignant; made the decision to not only remove the tumor..but my ovaries and uterus along with it; made peace with the fact that I will never have biological children; had major surgery; got amazing news about the tumor (benign...benign); was in terrible pain for days, and am still not able to move around that much; got 4 brand new scars on my already scarred stomach; and last but not least....said good bye to the house I love and moved into a brand new house with a significantly smaller closet in my room!

Now I can't be sure.....but I think all this merits a freak-out!   Well, I've had mine.....I knew it was bound to happen.....and I think that sometimes it's absolutely necessary to just cry it all out!

As it turns out, I woke up this morning and feel much better....got my perspective back....and was able to convince Comcast to come out today and install my cable!  I may even venture out to IKEA and buy a brand new (roomy) closet.....All's well that ends well.

Doctor's Orders!

Day 3 post-op....and in the interest of full disclousure.....I think I'm getting hot flashes!

The doc called yesterday, and I ran it by her...she says that can happen....but I'm having difficulty figuring out weather they are in fact hot flashes. They occur pretty randomly, and only last a few seconds...so I can't say it's been that annoying. If this is the worst of them, I think I got off easy!

My stomach is slowly deflating to its original size...but we're not completely there yet. Upon waking up from surgery, my bladder felt so heavy and full....and my stomach was so incredibly bloated...due to all the gas they pumped into me during the procedure. I remember saying "I'm so bloated I look like I'm pregnant"....immediately followed by the thought "oh wait, I'm never actually going to be pregnant".   That stung....but truthfully I was too focused on getting home, to actually dwell on that realization.

I was very determined to get discharged...and once they threatened me with a "catheter"....I started downing  water like a champ...and was finally able to empty my bladder....so they had no choice but to let me go home. Mission accomplished!

Aside from feeling exhausted....and disguting from not being able to wash and blow dry my hair....my stomach pains are really the worst part of it. The doc says I'm experiencing more pain than the norm, probably due to my previous stomach surgery (DIEP reconstruction after mastectomy). It left my stomach really tight...so the gas they pumped me with might hurt a bit more than usual..."a bit????"

I was told to walk around my house, which I'm doing.....but was also told not to lift anything! Tomorrow is moving day...(did I forget to mention?)   and I have been told to basically disappear and not lift a finger....so I guess my sis and brother in law will have to do all the heavy lifting.  You see that, there's a silver lining to everything.

r*e*s*p*e*c*t......find out what it means to me.......r*e*s*p*e*c*t......got a hysterectomy.

I' m two days post-op, and all i can say is.....ouch!

The day of surgery started very early, was in the pre-op holding area, strapped on to 3 ivs by 6am. Shortly after that, the doc arrived and came to talk to me and the family. She explained the details of the procedure, but all I noticed was that she was holding my hand the entire time. I really like my doc.

Soon after that, my prince charming Mr. Anasthesiologist showed up, and Rosie started to go bye bye......and all i remember thinking was "please God let this be the last time"....

About 3 hours later i started to come to. My stomach felt like it was going to explode, in fact, it's been 2 days and it still feels like it' s about to blow!

A few minutes after I came to, my dad arrived to the room and told me that the surgery went well and that...get this....the tumor was benign. EVen though I had already been told.....I just kept on asking..."was it really benign?"    I must have asked like 8 times.

Sometimes you get so used to hearing bad news, you stop thinking you'll ever hear a good one.   But Blows1's got notin' on my God!

That Taylor Swift knew what she was talking about...

I can only think of one thing that is more annoying than pre-op tests......"day before surgery" pre-op preparations. Then again...maybe they're equally annoying.

Now, I've already done this once or twice...hence would probably not need the checklist, but that didn't stop the doc from shoving a preparation DVD into my purse before I left her office last week.   I did go home and watch the DVD, and I will admit that it was very informative, however,  I couldn't help but feel....been there, done that, bought the souvenier. Still, I'm glad I watched it...mostly because, I knew my doc would ask me, and let's face it...she's about to cut me open, so the last thing I want to do is get on her bad side!

She instructed me to drink a ton of Gatorade today, as well as 8 ounces of Magnesium Citrate...to clean out my system. Done...and done!

Let's bottom line this....tomorrow sucks!  I am not thrilled by what I have to do, but know that I am doing the right thing for me, and that brings me comfort. I am pryaing for a successful procedure, and a speedy recovery. My life will surely be different from here on out, but I am relying on God to make this a smooth transition for me.

By this time tomorrow, these "decisions" that have haunted me for 2 years will be history...and as far as my ovaries go...well I think Taylor Swift said it best....after tomorrow..."We are never ever ever getting back together..like ever!"

Put down that dumbell!!

I got all of the important questions, and all the BIG concerns answered during my first consultation. Now that the decision was made, and the surgery was scheduled...it was time to go over the "recovery-day to day" stuff.

My latest pre-op appointment went a little something like this:

Doc: do you have any questions or concers?
Me: will I have to stop working out?
Doc: (holding back a "duh" look) yes, for 6 to 8 weeks.
Me: (holding back an "I hate you" look) really?
Doc: yes!
Me: for 6 to 8 weeks....really???
Doc: yes and YES!
Me: Is there anything at all I can do for excercise?
Doc: Yes, I do want you to walk. Walking will be good for you.
Me:(expressing an "I just saw a silver lining" look) oh that's great! how many miles are we talking here?
Doc: (expressing a "concerned" look) miles?? I meant you can walk in your hallway at home.......

Ok fine, I'll say it....what about sex?

One question came to mind....what about sex? Seeing that, after the procedure, I wouldn't be allowed to take part in the wonderful "hormone therapy movement", where would that leave me?  Would I actually want to have sex? and would I even enjoy it after all this?

You might think this is a stupid concern to have,when your life is at stake, but for me....well I chose to wait until I was married, which technically makes me a (she says in a hushed tone) v*i*r*g*i*n. So I wondered if all this meant that I would never experience sex like everybody else. Which would be yet another way that this gene (BLOWS1) makes me different from other people.

According to my doc, sex drive will deffinitely be effected...but seeing as sex for a woman is very emotional....maybe even more so than physical...this particular side effect can vary from woman to woman.

Seeing as I'm "single central" at the moment, I won't have an answer to this any time soon. But no worries, once I know....you'll be the first I tell.

Adoption or bust!

Removing your ovaries and uterus doesn't leave a girl with a lot of options for having babies. It seems like every woman should have a right to do that, shouldn't we? I know that I'm not ready for kids now, but how am I going to feel a few years from now?

Weather I'm ready to make these decisions or not, I had to consider other options. Freezing my eggs came up..but when I discussed it with the doc, she told me about all the hormones they would have to pump into me in order to produce these eggs. And unfortunately I'm kinda pressed for time here. Plus, seeing as hormones actually aid in the development of cancer cells, that would sort of defeat the purpose.

I never considered adoption before all this. You grow up, and you think things are just going to go as the pretty picture you have in your head....Girl meets Boy, Boy plays guitar and drives Camero, Boy and Girl fall in love, Girl makes babies.

My life may not be the pretty picture I imagined, but it's still mine....and it's a good one. If I am meant to be a mom one day, then it will happen. Only God knows, but I have faith.

How BLOWS1 got its name

I will eternally be grateful to my good friend Meghna, who is this amazing super super smart doctor, for giving me new perspective on the BRCA1 and BRCA2 name.    

She picked me up for dinner last week, because my sister had blocked my car into the garage (long story...would take another blog!)  Anyway, we were talking about my current predicament...and she looked at me and said, ever so gently...."This blows!"....."They should just call it BLOWS 1 and BLOWS 2".  

Needless to say, I laughed so hard I almost spit out what I was eating....and the name stuck.
From then on, BRCA1 will always be BLOWS1 to me!...it's a much more fitting name I think. ;)

The big 2012 ovaries debate!

After the phone call, comes the consultation...my sister came to the appointment with me..per my doc's request. I suppose it makes sense that they ask you not to come alone. "All the information can be a little overwhelming"........is what they say.

 

Here are my options:  do I take out only the mass? or do I take out the mass and the one ovary? or do I take out the mass and both ovaries? or do I take out the mass and wait for the results of the report and then take out my ovaries?  or do I bite the bullet and take out the mass, both ovaries and the uterus?   "what about the fallopian tubes?"........what about the fallopian tubes???    so now it's like...do I take out the mass, the ovaries, the uterus and the fallopian tubes?... and how about a kidney or two just encase?!  yep....why would this be   overwhelming....?

 

In the end, given my family history (mom and grandma died from ovarian cancer)...and my genetic disposition (BLOWS1 positive), I felt it would be best to take everything out now, to clean up house, close up shop! I know it will be one less burden I'll have to carry. Of course, it will be replaced by other burdens....but nobody's perfect..right?

 

 

 

Those of you who are done with preventative surgery take a step forward..not so fast Rosie!

Hey there, so I thought my journey with preventative surgery was over....until 2 weeks ago when I got a dreaded call from my gynocologist.

I tested positive for BRCA1 two years ago, and needless to say...my life has been nothing but "important medical decisions" ever since.  Don't get me wrong, I feel blessed to have this knowledge, and be able to make the decisions that could possibly save my life...still, it doesn't make "making" these decisions any easier. It's a huge responsability. I don't think people realize what a huge responsability it is.

I opted to do a preventative mastectomy 2 years ago, with the added bonus of a long and painful recovery....and now the doc tells me they found a mass in my ovaries.   I knew that it was only a matter of time before I was faced with the decision to remove my ovaries and uterus...but are you ever really ready for that phone call?  I think not.