I have received and reviewed the PET scan results with my completely untrained eyes. The last scan was on 6/2/10 which they compared to the one on 1/29/10. Keep in mind my surgery was 10/2/09. The last scan was post all chemo, but prior to radiation. Listed in the Opinion section, it reads: " Interval increase in level of hypermetabolic activity in the medial aspect of the right pectoralis major muscle in the parasternal area compared to the prior exam This is suspicious for site of residual/recurrent carcinoma".
In the text of his finding, he states that that the S.U.V is now 4.8 as compared to 3.0 on the prior scan. I don't know what as S.U.V is (in radiology terms), but this sounds like more of whatever it is, to me.
To me, it seems completely unreasonable that I would have more "surgical changes" 8 months after surgery than I did three months after surgery.
I am thinking I should scan and see what radiation did, unless the radiation is going to give a false result.
But at least now, I can have an informed conversation with the Big Onc.
Ha Ha, spell check loved this post!
Wednesday, November 3, 2010
Monday, November 1, 2010
11-1-10
I have just been blah today, maybe coming off a chocolate high from the kids' Halloween haul. I received an email about a little "class", lecture, meeting thingee at the YMCA Breast Cancer group about depression after cancer. Since I had just woken up from an odd nap, I thought, "Maybe I am depressed, I should go to this meeting."
The speaker gave a nice talk called "Pink Mourning", (gag gag). His take on things didn't bother me, I came away with some little nuggets that may come in handy. But man, I hate this freaking pink shit! The leader of the group in very pink, perky AND pink. She is very Rah Rah, let's all beat cancer and be all perky and happy. The lady in front of me was bummed since she is getting ready to start another round of chemo, she is in permenant treatment mode, I assume she has mets.
Sometimes, there is not a need for the pink pom-poms. Sometimes a hug and a "that really sucks" is more helpful.
I think I keep trying to embrace the pink since it bothers me so much, I figure there must be some issue I need to resolve. I am not a sorority kinda gal, I just never had female friends, maybe I should find a testicular cancer group.
But I will keep knocking on those pink doors, there has to be a group of grumpy ladies out there that I will fit in with.
Oh, I called PET scan place, they won't send me the scan reports. You would think that since I signed the release, I should be able to get them released to me....assholes. But, I called Onc's and they will send me reports so I can compare and contrast before next IV.
So that is my plan, look at scans reports, see what weirdness they are following and whether it sounds like they all think they are surgical changes (like did they show up immediately after surgery or did the weirdness show up on a later scan). I don't claim to know more than any doctor, but Onc didn't recall the location of the weirdness and whether it was in the same spot as Clyde. So he can review, I will review and we can make a plan.
The speaker gave a nice talk called "Pink Mourning", (gag gag). His take on things didn't bother me, I came away with some little nuggets that may come in handy. But man, I hate this freaking pink shit! The leader of the group in very pink, perky AND pink. She is very Rah Rah, let's all beat cancer and be all perky and happy. The lady in front of me was bummed since she is getting ready to start another round of chemo, she is in permenant treatment mode, I assume she has mets.
Sometimes, there is not a need for the pink pom-poms. Sometimes a hug and a "that really sucks" is more helpful.
I think I keep trying to embrace the pink since it bothers me so much, I figure there must be some issue I need to resolve. I am not a sorority kinda gal, I just never had female friends, maybe I should find a testicular cancer group.
But I will keep knocking on those pink doors, there has to be a group of grumpy ladies out there that I will fit in with.
Oh, I called PET scan place, they won't send me the scan reports. You would think that since I signed the release, I should be able to get them released to me....assholes. But, I called Onc's and they will send me reports so I can compare and contrast before next IV.
So that is my plan, look at scans reports, see what weirdness they are following and whether it sounds like they all think they are surgical changes (like did they show up immediately after surgery or did the weirdness show up on a later scan). I don't claim to know more than any doctor, but Onc didn't recall the location of the weirdness and whether it was in the same spot as Clyde. So he can review, I will review and we can make a plan.
11-1-10
Pinktober is OVER!!! Yeah!
I am contemplating two issues: whether to have the PET scan and whether to do the reconstruction. So I will lay my thoughts out here and see if I can get a clear picture.
Re: PET scan
I have not been declared cancer free but I am in a good mental space with that. If I were finally declared cancer free, would I stop worrying...probably not. If I were declared stable or no change in the chest spot, would that change anything...I may feel frustrated that I don't have a clear answer. If something new lights up...well that would suck.
I guess the sticking point is that damn area in the chest. I swear the doc said that it was consitant with surgical changes but it seems odd that it showed up well after the surgery. I had scans in between surgery and the weird spot that no weirdness showed up.
If it has always been there, I could assume surgical changes but it wasn't mentioned at my prechemo scan.
I guess the prudent thing to do would be get the report on all my scans and pretend like I know what I am reading to see what they have said. Ha ha, or I could trust the Big Onc and is judgement. I have no symptoms, I could just let this good mental space continue.
It is all a mental game anyway. My reality is good right now, why muck that up with the facts.
Re: recon
Again, I am in a good space, why mess it up. I could live like this forever. I am scared that I would get really bad results and regret the loss of muscle. If it came out cosmetically bad, I could always have it cut back off. BUT, I do not think they could reconnect the muscle. The plastic surgeon said that he would lift droopy boob and make new boob to match. Gravity would still affect old boob and over time it would start drooping again and I would want it relifted. And, since I am so young, at some point I would need the implant switched out. (It is nice that I may have a longer shelf life than the implant, outlive the implant could be my new goal.)
But, I can stop mentally masturbating about the recon if I want to, I can't have it done until after the first of the year due to the radiation. After the first, I could see what my finances are like, see if I can afford to take time off work.
I also don't have to do anything about the scan, ignorance can be bliss.
I am contemplating two issues: whether to have the PET scan and whether to do the reconstruction. So I will lay my thoughts out here and see if I can get a clear picture.
Re: PET scan
I have not been declared cancer free but I am in a good mental space with that. If I were finally declared cancer free, would I stop worrying...probably not. If I were declared stable or no change in the chest spot, would that change anything...I may feel frustrated that I don't have a clear answer. If something new lights up...well that would suck.
I guess the sticking point is that damn area in the chest. I swear the doc said that it was consitant with surgical changes but it seems odd that it showed up well after the surgery. I had scans in between surgery and the weird spot that no weirdness showed up.
If it has always been there, I could assume surgical changes but it wasn't mentioned at my prechemo scan.
I guess the prudent thing to do would be get the report on all my scans and pretend like I know what I am reading to see what they have said. Ha ha, or I could trust the Big Onc and is judgement. I have no symptoms, I could just let this good mental space continue.
It is all a mental game anyway. My reality is good right now, why muck that up with the facts.
Re: recon
Again, I am in a good space, why mess it up. I could live like this forever. I am scared that I would get really bad results and regret the loss of muscle. If it came out cosmetically bad, I could always have it cut back off. BUT, I do not think they could reconnect the muscle. The plastic surgeon said that he would lift droopy boob and make new boob to match. Gravity would still affect old boob and over time it would start drooping again and I would want it relifted. And, since I am so young, at some point I would need the implant switched out. (It is nice that I may have a longer shelf life than the implant, outlive the implant could be my new goal.)
But, I can stop mentally masturbating about the recon if I want to, I can't have it done until after the first of the year due to the radiation. After the first, I could see what my finances are like, see if I can afford to take time off work.
I also don't have to do anything about the scan, ignorance can be bliss.
Friday, October 29, 2010
10-29-10
I had my Herceptin IV yesterday. My blood work looks great, normal people normal instead of cancer people normal. Big Onc asked me about a PET scan, did I want one or not. Honestly, I had mentally planned on being scanned in November and I told him that. I am still hoping that I can be offically declared cancer free one day.
He OK'd the scan and laid out the possible results.
1. The chest area lights up more or the same: he will blame this on radiation and not cancer growth.
2. Nothing lights up and that will be great.
3. He didn't say it, but there is the possibility that something new would light up and that would be bad.
So, it seems that he is not willing to entertain that anything bad could be happening in there.
I could put off the scan for a little while, just ride this mental train for a bit. The train that says I am OK and able to make plans and do things like normal people. If I can believe that without a scan, that is good. A scan may prove that...but a scan could also leave the black cloud over me.
It is all a mind game.
Then, I went to the new plastic surgeon for a consult. He said the same thing as the first one. There is no way I can just have an implant stuck in there, my radiated, crunchy issue just won't support it. They have to bring in a fresh blood supply from somewhere. This guy does the Lat flap from the back.
I liked the Doc, he spent 45 minutes talking to me during the exam, answered all my questions. He had an odd take on the cancer thing. I was saying that I was waiting for a clean scan, make sure I wasn't going to die soon before thinking about a new boob. He said, "Oh, you will get a clean scan, no doubt. You just don't know how long it will stay that way." Hmmm, gotta love that brutal honesty.
So, now I feel confident that ripping a muscle off my back to make a boob is my only option. Doc says unless I am a golfer or swimmer, I won't notice a functional deficit.
Decisions, decisions.... I hope I can talk to someone who has had this done, I just have a hard time believing that you don't miss that big ole muscle.
He OK'd the scan and laid out the possible results.
1. The chest area lights up more or the same: he will blame this on radiation and not cancer growth.
2. Nothing lights up and that will be great.
3. He didn't say it, but there is the possibility that something new would light up and that would be bad.
So, it seems that he is not willing to entertain that anything bad could be happening in there.
I could put off the scan for a little while, just ride this mental train for a bit. The train that says I am OK and able to make plans and do things like normal people. If I can believe that without a scan, that is good. A scan may prove that...but a scan could also leave the black cloud over me.
It is all a mind game.
Then, I went to the new plastic surgeon for a consult. He said the same thing as the first one. There is no way I can just have an implant stuck in there, my radiated, crunchy issue just won't support it. They have to bring in a fresh blood supply from somewhere. This guy does the Lat flap from the back.
I liked the Doc, he spent 45 minutes talking to me during the exam, answered all my questions. He had an odd take on the cancer thing. I was saying that I was waiting for a clean scan, make sure I wasn't going to die soon before thinking about a new boob. He said, "Oh, you will get a clean scan, no doubt. You just don't know how long it will stay that way." Hmmm, gotta love that brutal honesty.
So, now I feel confident that ripping a muscle off my back to make a boob is my only option. Doc says unless I am a golfer or swimmer, I won't notice a functional deficit.
Decisions, decisions.... I hope I can talk to someone who has had this done, I just have a hard time believing that you don't miss that big ole muscle.
Wednesday, October 27, 2010
10-27-10
I have had a lung crud that lasted too long, so last week I saw the nurse practioner. I also was worried about the weird neck thing. It turns out that my cilia isn't perky anymore (hey, how perky should 42 year old cilia be!). The radiation has caused the hairs in my lungs to be a little crunchy and not able to move lung funk as well as they used to. So, I came home with an arsenol of lung medication and my breathing has improved. I don't know if my cilia regenerates or if it will always be crunchy, but it is just another thing on the list of crappy cancer related shit.
My neck thing is just muscular, probably from the new bite splint I am trying to help me stop grinding my teeth. But the NP was very cool and understanding of my cancer paranoia and said I could come by anytime I have a new lump or bump. That felt nice, to know that it is OK to be paranoid and that she understands.
Tomorrow I will see a plastic surgeon. I hope he has a better idea than ripping muscles off my back to make a boob out of. I could be lopsided forever, I can just stay like I am . But, if there are good options, I would like to know them.
I will confess, I have guilt thinking about reconstructive surgery. I feel guilt for putting my family through another surgery just for cosmetic reasons. I would have to miss some work, would need a ride to and from the hospital, the kids would have to carry groceries for a little bit. I realize that is not too much to ask of my family, but I am asking for help just so I can get a boob.
Maybe I am just trying to talk myself out of it so I won't be disappointed if it can't happen.
My neck thing is just muscular, probably from the new bite splint I am trying to help me stop grinding my teeth. But the NP was very cool and understanding of my cancer paranoia and said I could come by anytime I have a new lump or bump. That felt nice, to know that it is OK to be paranoid and that she understands.
Tomorrow I will see a plastic surgeon. I hope he has a better idea than ripping muscles off my back to make a boob out of. I could be lopsided forever, I can just stay like I am . But, if there are good options, I would like to know them.
I will confess, I have guilt thinking about reconstructive surgery. I feel guilt for putting my family through another surgery just for cosmetic reasons. I would have to miss some work, would need a ride to and from the hospital, the kids would have to carry groceries for a little bit. I realize that is not too much to ask of my family, but I am asking for help just so I can get a boob.
Maybe I am just trying to talk myself out of it so I won't be disappointed if it can't happen.
Monday, October 18, 2010
10-18-10
I am in a very crappy mood today, just angry, pissed off and tired of all this crap.
First off, my morning TV line-up has changed so I have been watching "The View"....probably my mistake, I should know better. So today, Sherri and Elizabeth get mammograms. It is Elizabeth's first and Sherri's first in many years. Watching them whine about the pressure, the squeezing, the smooshing of the mammo just really pissed me off. If you can't handle 3 seconds of smoosh every couple of years (or whatever the CDC is recommending now), why even bother getting a mammo since IF you have cancer, three seconds of smoosh will be a freaking walk in the park.
I am NOT saying don't get your mammo's, but please...please can we put this in perspective ladies. "I had to get a mammo and it squished me" wahhh wahh f*cking wahhh. It does not even register on the crappy day meter once you have had the bad mammogram and all the ensuing shit that goes with it.
Suck it up, it is not about saving the boobs, squishing the boobs, getting new perky boobs....woman are dying. Your squishy little test is like a paper cut. BUT, there are people out there whose paper cut turned into gangrene, their hand fell off and it led to a systemic blood infection that killed them.
(Man, I will be glad when Pinktober is over).
Secondly, I have a pain in my neck (unrelated to my morning TV problem). It has been bothering me for several days. My mind quickly goes to mets, cancer working it's way up to my brain. Sure, it could be muscle, sinus, teeth grinding, slept funny...but it could be something really bad.
Even if it is nothing, it pisses me off that everything registers as 'tumor' in my mind. It is a crappy way to live, waiting for the next shoe to drop. Clyde is still there, still don't know what the hell it is. My armpit has an odd tremor in it, a weird tick thing.
I did get two weeks without imagining any tumors. That was nice. I think I have just enough info to be dangerous. I know muscle strain, I work in Physical Therapy. This doesn't feel like muscle strain. I see the Oncologist in a week and a half anyway. I'll just set is aside and bring it up then if it is still around. That seems to be the cancer rule, symptoms that last longer than two weeks are note worthy.
Maybe I was unfair to the whiny View chicks, but it felt good to direct my anger somewhere.
First off, my morning TV line-up has changed so I have been watching "The View"....probably my mistake, I should know better. So today, Sherri and Elizabeth get mammograms. It is Elizabeth's first and Sherri's first in many years. Watching them whine about the pressure, the squeezing, the smooshing of the mammo just really pissed me off. If you can't handle 3 seconds of smoosh every couple of years (or whatever the CDC is recommending now), why even bother getting a mammo since IF you have cancer, three seconds of smoosh will be a freaking walk in the park.
I am NOT saying don't get your mammo's, but please...please can we put this in perspective ladies. "I had to get a mammo and it squished me" wahhh wahh f*cking wahhh. It does not even register on the crappy day meter once you have had the bad mammogram and all the ensuing shit that goes with it.
Suck it up, it is not about saving the boobs, squishing the boobs, getting new perky boobs....woman are dying. Your squishy little test is like a paper cut. BUT, there are people out there whose paper cut turned into gangrene, their hand fell off and it led to a systemic blood infection that killed them.
(Man, I will be glad when Pinktober is over).
Secondly, I have a pain in my neck (unrelated to my morning TV problem). It has been bothering me for several days. My mind quickly goes to mets, cancer working it's way up to my brain. Sure, it could be muscle, sinus, teeth grinding, slept funny...but it could be something really bad.
Even if it is nothing, it pisses me off that everything registers as 'tumor' in my mind. It is a crappy way to live, waiting for the next shoe to drop. Clyde is still there, still don't know what the hell it is. My armpit has an odd tremor in it, a weird tick thing.
I did get two weeks without imagining any tumors. That was nice. I think I have just enough info to be dangerous. I know muscle strain, I work in Physical Therapy. This doesn't feel like muscle strain. I see the Oncologist in a week and a half anyway. I'll just set is aside and bring it up then if it is still around. That seems to be the cancer rule, symptoms that last longer than two weeks are note worthy.
Maybe I was unfair to the whiny View chicks, but it felt good to direct my anger somewhere.
Wednesday, October 13, 2010
10-13-10
I think I am figuring out one of the things that bothers me about Pinktober.
It is like the tampon/maxi pads commercials with the horseback riding and the yoga and the night clubbing. The commercials say that my period is supposed to make me want to do those things.
All the breast cancer awareness marketing puts off the same vibe. You see all these smiling, pink bandanna wearing women doing marathons, ER+ woman on the beach or at the gym because their bones are so strong now.
Having my period doesn't make me want to go to a kickboxing class and having breast cancer hasn't compelled me to ..... whatever it is that I am not doing right, because I sure don't feel like the women in the awareness ads.
Women die, children are orphaned, women are being "pinked" which means to cut in a jagged line (I find that so ironic).
When I was diagnosed, I was literally given a breast cancer welcome kit with the bracelet and the scarf and angel pin and various sundries. They might as well handed me my reconstructed boobs and my marathon entry number tag to pin to my pink T-shirt.
So forgive me for not attending your Pink Pampered Chef party or drinking the Pink bottled water. I just don't get it, there must have been something missing in my welcome kit. God Bless the women that embrace the Pink, maybe it does remind someone to do a self exam. I don't mean to sound like I am taking anything away from those that do embrace the Pink. I just hate that I could be bathed in Pink Pepto Bismol and I would still feel scared, scarred and screwed.
This is what breast cancer looks like to me, there is nothing pink about it.
It is like the tampon/maxi pads commercials with the horseback riding and the yoga and the night clubbing. The commercials say that my period is supposed to make me want to do those things.
All the breast cancer awareness marketing puts off the same vibe. You see all these smiling, pink bandanna wearing women doing marathons, ER+ woman on the beach or at the gym because their bones are so strong now.
Having my period doesn't make me want to go to a kickboxing class and having breast cancer hasn't compelled me to ..... whatever it is that I am not doing right, because I sure don't feel like the women in the awareness ads.
Women die, children are orphaned, women are being "pinked" which means to cut in a jagged line (I find that so ironic).
When I was diagnosed, I was literally given a breast cancer welcome kit with the bracelet and the scarf and angel pin and various sundries. They might as well handed me my reconstructed boobs and my marathon entry number tag to pin to my pink T-shirt.
So forgive me for not attending your Pink Pampered Chef party or drinking the Pink bottled water. I just don't get it, there must have been something missing in my welcome kit. God Bless the women that embrace the Pink, maybe it does remind someone to do a self exam. I don't mean to sound like I am taking anything away from those that do embrace the Pink. I just hate that I could be bathed in Pink Pepto Bismol and I would still feel scared, scarred and screwed.
This is what breast cancer looks like to me, there is nothing pink about it.
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