I don't even now where to begin, because I'm so so so pissed! And for those who followed my crazy status updates, blowing up your news feeds- please read - this is why I went from silly to pissed so quickly.
I'll just begin with talking about my pain and stuff since well I've been in pain forever.
My surgeon is sort of a DICKFACE. Imagine the biggest douche-bag boy science geek you can ever remember from your high school memories and imagine him with a sour face- like somebody who has sucked about 15 lemons. He's just so short with me, and so 'yeah yeah yeah whatever whatever- i just get a really bad vibe from him and while I am confident he is going to do a good job i can't believe HE is going to be MY surgeon and to make it even better he runs on vacation as soon as he talks to john after my operation- WHICH HAS TO BE A DAY LATER- not his fault, but BLAH. My last surgeon was pretty awesome. This guy bites.
Our first meeting a few weeks ago when i was first told i had to have surgery was was sort of explosive. He asked about my pain and I told him, and when I told him about pain on both sides of my abdomen this is how the conversation went:
DF: So where is your pain?
Me: PREDOMINANTLY on my left, but sometimes, I get really bad pain, almost just as bad intensity on the right. Sometimes it jumps from left to right, right to left, but it tends to stay on my left side
DF: but there's nothing absolutely nothing on your right side to indicate that it can give you pain in ANY way, soooo yeahhhh, I'm looking here, and yeahhhhh
Me: are you kidding me? [and I jump off patient table, pull up my shirt and start pointing] so you are saying that this morning, when i couldn't get myself out of bed becuase this pain (ok pointing commences here), I just don' tknow what I am talking about? (something like that, ask John)- look on my previous scans, I do have some growths...
DF: but your pain is too low, these growths are too high, there is nothing that can indicate anything that there is any pain...I am not confident anything I see here is the cause of your pain, it is probably more the reason of your left side tumor...and when i go in, i do not feel like going through a mad search to find these tiny growths that i don't feel like are giving you any pain.....
So of course I convince myself of that thing called referred pain since nerve pain is good like that.
So when i see him today and he asks about my right side, I brush it off because I know it's referred pain.
GUESS WHAT
I FUCKING HAVE A TUMOR ABOVE MY RIGHT HIP WHERE I HAVE HAD MOTHER FUCKING PAIN. (does he tell me this on my PET result, no.... ego ego ego ego ego ego ego ego)- it's not a big deal but I WAS RIGHT!
I am so god damn mother fucking pissed now. Of course, it's "indicative of an NF tumor" but what the mother god damn mother FUCK. I am furious. I am ALWAYS right about my body. ALWAYS. I started hurting on my left side....specialists told me it was nothing, boom ...tumor... now ...my right... tumor. FUCKERS.
I am so tired of having pain, being told it's nothing, convincing myself it's nothing, and oh wait, there's a tumor!
But it's so so so small, like 1.1 cm.... which is why it has never been found before, and it's in my hip, which is why no abdominal MRI found it before, so I'm not worried about anybody not finding it before, and the right side never hurts as OFTEN as my left side (just when my LEFT is at its worst, sometimes my right side hurts too- i don't know if it's even related) And while small, it can hurt badly because, well, it's nerve pain, and nerve pain's a bitch.
But I'm so tired of these specialists who don't know anything about NF telling me their shitty knowledge about NF!
It begins with my GI- of course, my main painful tumor is NOT in the GI tract, so I can understand how maybe he didn't catch it! But instead of telling me, "oh well maybe this is why you came to me writhing in pain!" his ego got in the way. But he doesn't know anything about NF even though he thinks he does- maybe he's read about it about 50 years ago when he was in med school.
It continues with my gynecologist- she knows everything about vaginas and uteri and ovaries (where I thought this tumor was before) and knows textbook knowledge about everything else, and I think she probably got A's bullshitting her way on essay tests in her humanities classes or something, because that's about how she sounds when she explains her knowledge on NF.
ANYWAY so with this tumor I'm getting removed- as I explained before I FINALLY SAW MY NF SPECIALIST (a good guy) ABOUT THIS TUMOR. HE SAW THE TUMOR. HE SAID HE DIDN'T KNOW WHAT IT WAS. I would think if this expert saw a tumor he was an expert on, he would know a little fucking something about this, yeah? SO THIS IS WHY HE ORDERRED A CT AND A BIOPSY.
But I guess my NF doctor doesn't know anything anymore... because my surgeon and radiologist as well as the guy who did my biopsy and the radiologist who read my biopsy report are still saying this is an NF tumor.
Unless my painful biopsy changed my NF speclialist's mind without him telling ME (which is entirely possible because nobody ever communicates anything with me) I guess only a NF tumor hurts when penetrated by a biopsy syringe-- ONLY a NF tumor, I guess.
So now my surgeon and radiologist are really positive that it's an NF tumor, though the surgeon agrees NF tumors don't cause the pain. The PET scan shows too much brown fat over the tumor so it can't confirm or deny malignancy, AND AND AND while I was told that they should know if it's cancer or not while I am in the operating room, there is a small possibility the tumor could just prove to be a NF tumor and then LAAAATER after the final biopsy it can show malignancy (it has happened before- rare, but it has happened before) and this is not good because they prefer to do intra-operative radiation, so to prepare for this so in case this happens, they'll drop some fatty tissue in my abdomen to protect my bowels in case they have to do some post-operative radiation soon after surgery. They'll have to do post-operative radiation regardless, but not so soon after surgery.
I hate being thrown around like this! NO ! It's not NF! YES IT CAN BE! Just fuck it all.
I'm thinking maybe my NF doctor doesn't know WTF this tumor is because it has nothing to do with nerves (he originally thought it was a GIST) and my surgeon et al are making assumptions about WTF this tumor is because they are SARCOMA/orthopedic oncologist specialists and maybe even though it's in a sarcoma AREA, they think it's a NF tumor because it's INSIDE a nerve bundle (and I'm willing to bet that like John trying to teach somebody about the history of Iran, these sarcoma people have about the same knowledge about what NF truly is) maybe it's not what ANYBODY thinks- and when they open me up I'm going to surprise to everybody. BEST CASE SCENARIO IT IS NOT A NF TUMOR, IT IS NOT CANCER, IT IS JUST A WEIRD BENIGN TUMOR (though this is the most unlikely of all the tumors it can be!)
And if this TRULY IS AN NF TUMOR, really FUCK my LIFE because there is a good chance it will grow back. I guess they think they're doing me a favor by telling me it's an NF tumor, or making me feel better or something - i guess they think I am terrified of cancer or something. I'm terrified of a bad cancer that has spread or will spread...i'm terrified of dying of cancer, yes. But i'm not terrified of a tiny cancer that can be taken care of with an easy treatment. I mean- I am doing JUST fine after my stomach cancer. JUST FINE. Seriously, cancer is not the worst thing that can happen here- at least an early, treatable one!
....ACTUALLY... I am more terrified of the NF tumor growing back than a tiny 3 cm cancer being removed and treated. I have gone 7 years of becoming more and more debilitated with pain- if that's TRULY NF- really fuck my fucking life. I started feeling shitty in 2004, and have felt worse EVERY YEAR, and have felt especially worse since moving to Boston and ESPECIALLY WORSE IN THE LAST YEAR. To me, a tiny cancer is easy- but an NF tumor is a life torture sentence. Hate me all you want for saying that, but it's true.
And I hate the uncertainty.
I'll just begin with talking about my pain and stuff since well I've been in pain forever.
My surgeon is sort of a DICKFACE. Imagine the biggest douche-bag boy science geek you can ever remember from your high school memories and imagine him with a sour face- like somebody who has sucked about 15 lemons. He's just so short with me, and so 'yeah yeah yeah whatever whatever- i just get a really bad vibe from him and while I am confident he is going to do a good job i can't believe HE is going to be MY surgeon and to make it even better he runs on vacation as soon as he talks to john after my operation- WHICH HAS TO BE A DAY LATER- not his fault, but BLAH. My last surgeon was pretty awesome. This guy bites.
Our first meeting a few weeks ago when i was first told i had to have surgery was was sort of explosive. He asked about my pain and I told him, and when I told him about pain on both sides of my abdomen this is how the conversation went:
DF: So where is your pain?
Me: PREDOMINANTLY on my left, but sometimes, I get really bad pain, almost just as bad intensity on the right. Sometimes it jumps from left to right, right to left, but it tends to stay on my left side
DF: but there's nothing absolutely nothing on your right side to indicate that it can give you pain in ANY way, soooo yeahhhh, I'm looking here, and yeahhhhh
Me: are you kidding me? [and I jump off patient table, pull up my shirt and start pointing] so you are saying that this morning, when i couldn't get myself out of bed becuase this pain (ok pointing commences here), I just don' tknow what I am talking about? (something like that, ask John)- look on my previous scans, I do have some growths...
DF: but your pain is too low, these growths are too high, there is nothing that can indicate anything that there is any pain...I am not confident anything I see here is the cause of your pain, it is probably more the reason of your left side tumor...and when i go in, i do not feel like going through a mad search to find these tiny growths that i don't feel like are giving you any pain.....
So of course I convince myself of that thing called referred pain since nerve pain is good like that.
So when i see him today and he asks about my right side, I brush it off because I know it's referred pain.
GUESS WHAT
I FUCKING HAVE A TUMOR ABOVE MY RIGHT HIP WHERE I HAVE HAD MOTHER FUCKING PAIN. (does he tell me this on my PET result, no.... ego ego ego ego ego ego ego ego)- it's not a big deal but I WAS RIGHT!
I am so god damn mother fucking pissed now. Of course, it's "indicative of an NF tumor" but what the mother god damn mother FUCK. I am furious. I am ALWAYS right about my body. ALWAYS. I started hurting on my left side....specialists told me it was nothing, boom ...tumor... now ...my right... tumor. FUCKERS.
I am so tired of having pain, being told it's nothing, convincing myself it's nothing, and oh wait, there's a tumor!
But it's so so so small, like 1.1 cm.... which is why it has never been found before, and it's in my hip, which is why no abdominal MRI found it before, so I'm not worried about anybody not finding it before, and the right side never hurts as OFTEN as my left side (just when my LEFT is at its worst, sometimes my right side hurts too- i don't know if it's even related) And while small, it can hurt badly because, well, it's nerve pain, and nerve pain's a bitch.
But I'm so tired of these specialists who don't know anything about NF telling me their shitty knowledge about NF!
It begins with my GI- of course, my main painful tumor is NOT in the GI tract, so I can understand how maybe he didn't catch it! But instead of telling me, "oh well maybe this is why you came to me writhing in pain!" his ego got in the way. But he doesn't know anything about NF even though he thinks he does- maybe he's read about it about 50 years ago when he was in med school.
It continues with my gynecologist- she knows everything about vaginas and uteri and ovaries (where I thought this tumor was before) and knows textbook knowledge about everything else, and I think she probably got A's bullshitting her way on essay tests in her humanities classes or something, because that's about how she sounds when she explains her knowledge on NF.
ANYWAY so with this tumor I'm getting removed- as I explained before I FINALLY SAW MY NF SPECIALIST (a good guy) ABOUT THIS TUMOR. HE SAW THE TUMOR. HE SAID HE DIDN'T KNOW WHAT IT WAS. I would think if this expert saw a tumor he was an expert on, he would know a little fucking something about this, yeah? SO THIS IS WHY HE ORDERRED A CT AND A BIOPSY.
But I guess my NF doctor doesn't know anything anymore... because my surgeon and radiologist as well as the guy who did my biopsy and the radiologist who read my biopsy report are still saying this is an NF tumor.
Unless my painful biopsy changed my NF speclialist's mind without him telling ME (which is entirely possible because nobody ever communicates anything with me) I guess only a NF tumor hurts when penetrated by a biopsy syringe-- ONLY a NF tumor, I guess.
So now my surgeon and radiologist are really positive that it's an NF tumor, though the surgeon agrees NF tumors don't cause the pain. The PET scan shows too much brown fat over the tumor so it can't confirm or deny malignancy, AND AND AND while I was told that they should know if it's cancer or not while I am in the operating room, there is a small possibility the tumor could just prove to be a NF tumor and then LAAAATER after the final biopsy it can show malignancy (it has happened before- rare, but it has happened before) and this is not good because they prefer to do intra-operative radiation, so to prepare for this so in case this happens, they'll drop some fatty tissue in my abdomen to protect my bowels in case they have to do some post-operative radiation soon after surgery. They'll have to do post-operative radiation regardless, but not so soon after surgery.
I hate being thrown around like this! NO ! It's not NF! YES IT CAN BE! Just fuck it all.
I'm thinking maybe my NF doctor doesn't know WTF this tumor is because it has nothing to do with nerves (he originally thought it was a GIST) and my surgeon et al are making assumptions about WTF this tumor is because they are SARCOMA/orthopedic oncologist specialists and maybe even though it's in a sarcoma AREA, they think it's a NF tumor because it's INSIDE a nerve bundle (and I'm willing to bet that like John trying to teach somebody about the history of Iran, these sarcoma people have about the same knowledge about what NF truly is) maybe it's not what ANYBODY thinks- and when they open me up I'm going to surprise to everybody. BEST CASE SCENARIO IT IS NOT A NF TUMOR, IT IS NOT CANCER, IT IS JUST A WEIRD BENIGN TUMOR (though this is the most unlikely of all the tumors it can be!)
And if this TRULY IS AN NF TUMOR, really FUCK my LIFE because there is a good chance it will grow back. I guess they think they're doing me a favor by telling me it's an NF tumor, or making me feel better or something - i guess they think I am terrified of cancer or something. I'm terrified of a bad cancer that has spread or will spread...i'm terrified of dying of cancer, yes. But i'm not terrified of a tiny cancer that can be taken care of with an easy treatment. I mean- I am doing JUST fine after my stomach cancer. JUST FINE. Seriously, cancer is not the worst thing that can happen here- at least an early, treatable one!
....ACTUALLY... I am more terrified of the NF tumor growing back than a tiny 3 cm cancer being removed and treated. I have gone 7 years of becoming more and more debilitated with pain- if that's TRULY NF- really fuck my fucking life. I started feeling shitty in 2004, and have felt worse EVERY YEAR, and have felt especially worse since moving to Boston and ESPECIALLY WORSE IN THE LAST YEAR. To me, a tiny cancer is easy- but an NF tumor is a life torture sentence. Hate me all you want for saying that, but it's true.
And I hate the uncertainty.
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