When I last left all of this, I had an appointment with a specialist in Portland at St. Vincents to discuss my "What do I do now?" problem with taking Tamoxifen and swelling up like crazy. I had that today. I walked away more knowledgeable and more scared - not a great combination.
I learned I have a 20% recurrence rate without Tamoxifen and even if I would have done a lumpectomy, radiation and chemo my recurrence rate would still be 20% without Tamoxifen. Since having a mastectomy I am likely not to get the cancer in my breasts (not much tissue left), but rather brain, lungs, liver, and other organs. 20%.....pretty high if you ask me. And no way of testing for any of it - no bloodwork, scans, other tests - just a wait and see. Are you kidding me? Wait for it to strike? No prevention? What now?
My options are do nothing, get back on Tamoxifen or we try an aromatase inhibitor. The Evista that Dr. Lee suggested does not have a great track record for stopping recurrence and the doctor concurred with my findings that it isn't the best option. So glad I made this appointment.
Aromatase inhibitors are meant for women that are post menopause. I am 36, I am not post menopause, not even close.....medicine can do some amazing things. My five year strategy - a shot every month in my belly to trick my body into menapause and a pill everyday to trick my cancer in to staying away. Plan sucks....but my risk of recurrence is down to 10%.....I like that number better. Could be more side effects to deal with too, but I am no stranger to that...bring it, I will survive it, although I am sure there will be some grumbling. Not sure when it all starts, but my doctors will let me know.
Jeremy and I left with a plan, got to the car, and I cried and cried and cried. I never really had anyone tell me about the possibility of other cancer spots it could appear - my brain and lungs. That is a slow death waiting to happen. And no prevention, just six month check ups. Not sure what that does, but something I guess. This is the time that I become very in-tune with my body and listen when something feels wrong....my life depends on it.
Monday, April 11, 2011
Friday, April 1, 2011
A Really Bad Game....
I am a coach, for those of you that have not picked up on that throughout reading my blog. The head coach of high school varsity girls softball. This is my side job, and I take great pride in being a role model in these young women's lives. We had two games last night, back to back, first league games. The scores....13-2 and 11-1, all finished in five innings due to the mercy rule (10 ahead at five innings), we are the low numbers = loss.
I am not sure how, or where the seams got tore off, or if in one catastrophic moment my girls forgot how to play softball. I don't know. They look to me for guidance, encouragement, strength and balance. I am their biggest fan at all times, even in these not so great moments. Of course I was angry, embarrassed, frustrated, and at a loss.Who wouldn't be? When you feel you have given each player the tools to be successful, witnessed their successes, bragged about them to peers, and, in competition it falls apart... that is heartache.
Game over, we took to the field and practiced. You see it would have been easy, just to leave, cry over it at dinner, and accept defeat. Why accept it? Why let it win? I can't get the game back, I can't reverse the loss, but I can take that negative and turn it into something positive. We lapsed, lost our mental stability so in some way it is my job to show each and every player they are capable after giving the game away to errors - eight dropped balls. And waiting until tomorrow loses the feelings they are experiencing. And we're off.
"Mine! Mine! I got it!" as she is running in to make the catch.
And she is calling it, leaps and dives to give everything she has to this ball, she misses it, but her back up is there. I shout, "Great effort, keep it up! That's exactly what we want to see!"
Ball is a tweener, in the 5-6-7 hole, everybody's on their horse, and you hear loud as day, "MINE!" can't miss that sound, the other two stop and the caller of the ball takes control - she wanted it, grabs it, and makes the play at two.
And it carried on. We started to be successful.....confident.....strong.....again. I took this really bad game and created a teaching moment for them to walk away that night, yes, with a loss, but also with knowing they can dive for balls, call it, communicate, keep composure.....do it.
Yes, right, there is always that one parent that has a problem with staying late, is determined I have no respect for others, and feels that telling on me is what needs to be done. I am OK with that, she doesn't get it. If I didn't respect, didn't care, didn't want the best outcome for these players we would have gone home, shoot, that would have been easy. By staying I taught them fight, drive, determination and most of all...we will never quit, I don't quit, it doesn't even exist my vocabulary. And now at this juncture in my life I understand "not quitting "at a completely different level - a higher level. I hope I am teaching this attitude of strength and desire and when these players leave, and are faced with adversity, they will know what it means to push through and never quit.
I have control....breathe....slow it down.....focus.....want it.......I will never quit.....I will triumph!
I am not sure how, or where the seams got tore off, or if in one catastrophic moment my girls forgot how to play softball. I don't know. They look to me for guidance, encouragement, strength and balance. I am their biggest fan at all times, even in these not so great moments. Of course I was angry, embarrassed, frustrated, and at a loss.Who wouldn't be? When you feel you have given each player the tools to be successful, witnessed their successes, bragged about them to peers, and, in competition it falls apart... that is heartache.
Game over, we took to the field and practiced. You see it would have been easy, just to leave, cry over it at dinner, and accept defeat. Why accept it? Why let it win? I can't get the game back, I can't reverse the loss, but I can take that negative and turn it into something positive. We lapsed, lost our mental stability so in some way it is my job to show each and every player they are capable after giving the game away to errors - eight dropped balls. And waiting until tomorrow loses the feelings they are experiencing. And we're off.
"Mine! Mine! I got it!" as she is running in to make the catch.
And she is calling it, leaps and dives to give everything she has to this ball, she misses it, but her back up is there. I shout, "Great effort, keep it up! That's exactly what we want to see!"
Ball is a tweener, in the 5-6-7 hole, everybody's on their horse, and you hear loud as day, "MINE!" can't miss that sound, the other two stop and the caller of the ball takes control - she wanted it, grabs it, and makes the play at two.
And it carried on. We started to be successful.....confident.....strong.....again. I took this really bad game and created a teaching moment for them to walk away that night, yes, with a loss, but also with knowing they can dive for balls, call it, communicate, keep composure.....do it.
Yes, right, there is always that one parent that has a problem with staying late, is determined I have no respect for others, and feels that telling on me is what needs to be done. I am OK with that, she doesn't get it. If I didn't respect, didn't care, didn't want the best outcome for these players we would have gone home, shoot, that would have been easy. By staying I taught them fight, drive, determination and most of all...we will never quit, I don't quit, it doesn't even exist my vocabulary. And now at this juncture in my life I understand "not quitting "at a completely different level - a higher level. I hope I am teaching this attitude of strength and desire and when these players leave, and are faced with adversity, they will know what it means to push through and never quit.
I have control....breathe....slow it down.....focus.....want it.......I will never quit.....I will triumph!
Wednesday, March 23, 2011
Left Expander Follow up
Had my follow up today and all is well. My doctor is impressed with how plyable my left boob skin is for normally when an expander is removed the skin tends to shrink up. I was impressive with how well I took care of the left boob skin.....and I informed her that I took care of nothing and did nothing, and this was all natural. BUT, if I would have been informed of the casualties that could have happened I might have taken much better care of it. Well, it is all past now so the future is what I am looking into, and so far so good.
I start expanding April 11th at 3pm and end on May 25th at 9am. Can't wait.... and then no surgeries until September....life will be almost normal.....
I start expanding April 11th at 3pm and end on May 25th at 9am. Can't wait.... and then no surgeries until September....life will be almost normal.....
Saturday, March 19, 2011
Falling is for Sissies
We had a game today and it was supposed to be at home, but we got rained out and headed to Pleasant Hill. Things were going great, Jeremy, Darcy, Tricia and Tony were taking care of everything and so I really just had to coach.
On the way out to the field from the dugout I decided to start coaching a kid on her fielding and wouldn't you know it, I step, foot goes up, foot comes down and ball rolls right under me. I am falling. Now when you fall you really only have seconds to fully figure out how you are going to manage it - Put your hands out, face plant, roll, do a somersault..... not much time to really devise a great exit strategy.
Drum roll please......I start to put my hands out to catch myself and apparently thought better of it for I just tucked my left arm and rolled onto my side and back. I laid there, then rolled over onto my back and continued to do the self assessment to see if anything hurt anymore than it should. And wouldn't you know it, Jeremy was standing right over me and just picked me right up. He kept asking me if I was OK, while my brain was still doing a check-in with my various body parts. I was on some pretty good pain meds and things just don't tend to work that fast. I answered with an, "I am fine," so he brushes me off, Darcy and Tricia come over to finish the dirt brush off, and we all go back to pre-game.
My pride was much more wounded than any physical body part. It's hard to be cool when you're falling right after surgery......oh well....it was terribly funny.
On the way out to the field from the dugout I decided to start coaching a kid on her fielding and wouldn't you know it, I step, foot goes up, foot comes down and ball rolls right under me. I am falling. Now when you fall you really only have seconds to fully figure out how you are going to manage it - Put your hands out, face plant, roll, do a somersault..... not much time to really devise a great exit strategy.
Drum roll please......I start to put my hands out to catch myself and apparently thought better of it for I just tucked my left arm and rolled onto my side and back. I laid there, then rolled over onto my back and continued to do the self assessment to see if anything hurt anymore than it should. And wouldn't you know it, Jeremy was standing right over me and just picked me right up. He kept asking me if I was OK, while my brain was still doing a check-in with my various body parts. I was on some pretty good pain meds and things just don't tend to work that fast. I answered with an, "I am fine," so he brushes me off, Darcy and Tricia come over to finish the dirt brush off, and we all go back to pre-game.
My pride was much more wounded than any physical body part. It's hard to be cool when you're falling right after surgery......oh well....it was terribly funny.
Thursday, March 17, 2011
Post Surgery - Left Expander
Apparently I forgot how much it hurt to have one's breast messed with and chest muscle expanded - OUCH!
I woke up in surgery recovery with very watery eyes and a whole lot of pain radiating from my left chest area. I will say one thing, "Why did I say no to the pain pump?" Stupidity! I had the chance to have it, Dr. Havard offered, I said no along with, "It can't be that bad..."
Let me tell you something sister it can!
The pain became manageable and they sent me home. Driving was awful and you feel every little bump, not comfortable. But we made it, and I tried to lay on the couch and watch TV but the pain was practically unbearable and the show Jeremy and I were watching was not taking my mind off of the pain. The pain pills were not taking the edge off AT ALL! Practice was at 4pm and I decided to go with Jeremy. No sense sitting at home trying to forget about the pain I was experiencing, at least by going to practice I could focus on something else so I wouldn't keep obsessing about how much pain I was in.
Practice was fun, the girls did sliding practice and loved it. Then we did some diving drills and played a game. Well, duh, I didn't do any of it, just stand around, but at least the pain seemed to lessen. Jeremy even brought a chair for me to use and sit in....didn't happen, just kept pacing and coaching, couldn't help myself. But hey, I wasn't thinking about the pain.
When I got home, Jeremy got the ice bags ready and I iced and fell right to sleep. The exercise was helpful, I am going to say.
I woke up in surgery recovery with very watery eyes and a whole lot of pain radiating from my left chest area. I will say one thing, "Why did I say no to the pain pump?" Stupidity! I had the chance to have it, Dr. Havard offered, I said no along with, "It can't be that bad..."
Let me tell you something sister it can!
The pain became manageable and they sent me home. Driving was awful and you feel every little bump, not comfortable. But we made it, and I tried to lay on the couch and watch TV but the pain was practically unbearable and the show Jeremy and I were watching was not taking my mind off of the pain. The pain pills were not taking the edge off AT ALL! Practice was at 4pm and I decided to go with Jeremy. No sense sitting at home trying to forget about the pain I was experiencing, at least by going to practice I could focus on something else so I wouldn't keep obsessing about how much pain I was in.
Practice was fun, the girls did sliding practice and loved it. Then we did some diving drills and played a game. Well, duh, I didn't do any of it, just stand around, but at least the pain seemed to lessen. Jeremy even brought a chair for me to use and sit in....didn't happen, just kept pacing and coaching, couldn't help myself. But hey, I wasn't thinking about the pain.
When I got home, Jeremy got the ice bags ready and I iced and fell right to sleep. The exercise was helpful, I am going to say.
Surgery - Left expaner
Well today is the day.... hopefully the day I get to look more normal. I get my left expander put back in, and I am excited, nervous, and scared. Surgery is never a fun thing and the waking up with pain is never anything to look forward to. I am scheduled for 7:30 to get in and be out by 10:15....it really shouldn't take that long.
I hope this is the last event for awhile and I can just move on after this. Then September I will get the real silicone boobs put in, not because it takes that long to expand, but because I want to enjoy my summer with no surgeries, recoveries, or trauma to my body.....we'll see.
I hope this is the last event for awhile and I can just move on after this. Then September I will get the real silicone boobs put in, not because it takes that long to expand, but because I want to enjoy my summer with no surgeries, recoveries, or trauma to my body.....we'll see.
Tamoxifen
So, my appointment with Dr. Lee was uneventful....I did the usual 45 minute wait, and she came in, was really nice, gave me a hug, looked at my ankles - swollen, then we talked about the Tamoxifen. I was off of it then for four days and they were the best four days of my life. I didn't realize how awful the stuff was until I wasn't taking it anymore. I have been sleeping, the hot flashes are less in most cases although sometimes I have a big one, I am not as restless, and now the swelling is going down.
She has taken me off of it and off of everything for now and we will revisit in May with my follow up and probably start on Evista. Oh, this drug has its own round of side effects and it doesn't treat recurrence according to all the stuff I have read....so, why take it! I am getting a second opinion.
She has taken me off of it and off of everything for now and we will revisit in May with my follow up and probably start on Evista. Oh, this drug has its own round of side effects and it doesn't treat recurrence according to all the stuff I have read....so, why take it! I am getting a second opinion.
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