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/
Tuesday, October 16, 2012
Friday, October 12, 2012
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.
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.
Wednesday, October 10, 2012
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!
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!
Monday, October 8, 2012
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.
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.
Friday, October 5, 2012
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.
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.
Thursday, October 4, 2012
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!
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!
Monday, October 1, 2012
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!"
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!"
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