To all women who mother...and there are many different ways to be a mother, I wish you a happy, healthy and wonderful day!
And to all of the readers of this blog, male & female, who have certainly mothered me through this ordeal, I send you my deepest gratitude and blessings :)
Sunday, May 10, 2009
Thursday, May 7, 2009
Mental health & Daniel
(Might not post here again till after the weekend -- doc appt tomorrow, will update Mon.)
Stress has been a major issue lately, for obvious reasons, and some that are not.
I had a very anxiety producing childhood and then some traumatic events, all combining to give me post-traumatic stress syndrome, intermittent anxiety and occasional panic attacks. I also once suffered a major depression that lasted about 10 years – undiagnosed and untreated, the end of which was when I gave birth to my precious Megan almost eight years ago.
We call those lost years "the decade I sat in a chair" because that’s pretty much what I did, sit around, self-medicating with food (thus once weighing 300 lbs). Thankfully that was before I had kids. Anyway, clearly I’ve come a long way. But now in the last month or so it felt like all of that was unwinding faster than I could grasp at the fragile threads.
So you can understand why I have a particular concern about cancer & my mental health status.
Naturally anyone would be freaking out about being diagnosed with a serious illness. How that would manifest might be slightly different from person to person, but certainly common reactions would be familiar to many. However in my case there could be additional issues that would heighten a typical or expected level of anxiety to potentially dangerous conditions, physically and/or mentally. That’s why I went running to a psychiatrist, pronto.
Physically I could feel a difference from the moment I found out, no doubt exacerbated by the month long build up of “not knowing” prior. Mere seconds after finding out I had breast cancer I went into an immediate and constant state of completely unrelenting physiological panic – fight or flight. I swear I could feel the adrenaline pumping through my body continuously; it was as if I were vibrating or pulsing. I felt shaky and weak yet I couldn’t stop moving, even if it were just to pace a little. I have very mild mitral valve prolapse and my heart seemed to be pounding harder than I’ve experienced ever before. I barely slept four hours a night total, and even that wasn’t uninterrupted. And the almost constant tears, from soft weeping to raging sobs with just a few moments of dry eyes in between has been draining – literally, I think I have been slightly dehydrated and my eyes and facial skin were radically effected by the salt.
Since Tuesday tho I can feel a discernable difference. Don’t get me wrong, I still feel scared out of my mind, still cry, still feel huge anxiety & depression, but it’s at an ever so slightly lower level physically speaking. The constant vibration is gone; the adrenaline rush is more sporadic and not continuous. My heart doesn’t pound and only occasionally races. I am crying what one might expect to be a reasonable amount…daily, several times, but not literally non-stop.
What changed since Tuesday? Three things.
Monday night I got my refill for Xanax from primary care doc and have been using it more liberally…like two pills during a 24 hr period instead of ½ only at night for sleep.
Sunday evening I began faking being happy around my son as much as I could. On Monday I had to really kick it up a notch, as I blogged about, because I was the only adult around for the entire day & night. I think there’s something to the whole “fake it till ya make it” idea…like it can tweak your brain chemistry a bit.
Most importantly -- Daniel and I have found our way back to each other. Michael thinks we were never really “apart” but it felt that way to me in my sensitive state.
Sadly & gladly he has stopped asking to nurse, tho he did ask me if my ta-ta was happy yesterday, which nearly sent me back over the edge. I told him Mama was happy because I loved him. He hugged me.
At night I’ve been able to comfort him back to sleep if he wakes, my biggest obstacle & concern…I just wrap my arms around him and rest his head on my pillow next to mine (have I mentioned we all co-sleep?) I have nursed him on a couple occasions in the middle of the night if he has woken...more because I wanted to, and since he is practically asleep he doesn’t seem to remember and it hasn’t spurred him on to ask for more at other times. To get him to fall asleep at bed time now I sing while holding & petting him, as he wraps his little arms around me and plays with my hair (note to self, got to get that industrial strength wig). I’m pumping some milk so I still keep up a small amount of supply. I just figured all the info on my situation isn’t in and I don’t want/can’t face giving up on nursing 100% forever completely, not just yet. (cue tears now).
That pretty much sums up where I am in my head at the moment.
Cancer-wise I believe that if my lymph nodes are clear and if I am BRCA negative I will have overcome a bunch of initial hurdles and could even feel more frequent moments that resemble something like what calm used to look like, only different. So that is what I am hoping for now. Thanks to all of you wonderful blessed people that are hoping right along with me.
Stress has been a major issue lately, for obvious reasons, and some that are not.
I had a very anxiety producing childhood and then some traumatic events, all combining to give me post-traumatic stress syndrome, intermittent anxiety and occasional panic attacks. I also once suffered a major depression that lasted about 10 years – undiagnosed and untreated, the end of which was when I gave birth to my precious Megan almost eight years ago.
We call those lost years "the decade I sat in a chair" because that’s pretty much what I did, sit around, self-medicating with food (thus once weighing 300 lbs). Thankfully that was before I had kids. Anyway, clearly I’ve come a long way. But now in the last month or so it felt like all of that was unwinding faster than I could grasp at the fragile threads.
So you can understand why I have a particular concern about cancer & my mental health status.
Naturally anyone would be freaking out about being diagnosed with a serious illness. How that would manifest might be slightly different from person to person, but certainly common reactions would be familiar to many. However in my case there could be additional issues that would heighten a typical or expected level of anxiety to potentially dangerous conditions, physically and/or mentally. That’s why I went running to a psychiatrist, pronto.
Physically I could feel a difference from the moment I found out, no doubt exacerbated by the month long build up of “not knowing” prior. Mere seconds after finding out I had breast cancer I went into an immediate and constant state of completely unrelenting physiological panic – fight or flight. I swear I could feel the adrenaline pumping through my body continuously; it was as if I were vibrating or pulsing. I felt shaky and weak yet I couldn’t stop moving, even if it were just to pace a little. I have very mild mitral valve prolapse and my heart seemed to be pounding harder than I’ve experienced ever before. I barely slept four hours a night total, and even that wasn’t uninterrupted. And the almost constant tears, from soft weeping to raging sobs with just a few moments of dry eyes in between has been draining – literally, I think I have been slightly dehydrated and my eyes and facial skin were radically effected by the salt.
Since Tuesday tho I can feel a discernable difference. Don’t get me wrong, I still feel scared out of my mind, still cry, still feel huge anxiety & depression, but it’s at an ever so slightly lower level physically speaking. The constant vibration is gone; the adrenaline rush is more sporadic and not continuous. My heart doesn’t pound and only occasionally races. I am crying what one might expect to be a reasonable amount…daily, several times, but not literally non-stop.
What changed since Tuesday? Three things.
Monday night I got my refill for Xanax from primary care doc and have been using it more liberally…like two pills during a 24 hr period instead of ½ only at night for sleep.
Sunday evening I began faking being happy around my son as much as I could. On Monday I had to really kick it up a notch, as I blogged about, because I was the only adult around for the entire day & night. I think there’s something to the whole “fake it till ya make it” idea…like it can tweak your brain chemistry a bit.
Most importantly -- Daniel and I have found our way back to each other. Michael thinks we were never really “apart” but it felt that way to me in my sensitive state.
Sadly & gladly he has stopped asking to nurse, tho he did ask me if my ta-ta was happy yesterday, which nearly sent me back over the edge. I told him Mama was happy because I loved him. He hugged me.
At night I’ve been able to comfort him back to sleep if he wakes, my biggest obstacle & concern…I just wrap my arms around him and rest his head on my pillow next to mine (have I mentioned we all co-sleep?) I have nursed him on a couple occasions in the middle of the night if he has woken...more because I wanted to, and since he is practically asleep he doesn’t seem to remember and it hasn’t spurred him on to ask for more at other times. To get him to fall asleep at bed time now I sing while holding & petting him, as he wraps his little arms around me and plays with my hair (note to self, got to get that industrial strength wig). I’m pumping some milk so I still keep up a small amount of supply. I just figured all the info on my situation isn’t in and I don’t want/can’t face giving up on nursing 100% forever completely, not just yet. (cue tears now).
That pretty much sums up where I am in my head at the moment.
Cancer-wise I believe that if my lymph nodes are clear and if I am BRCA negative I will have overcome a bunch of initial hurdles and could even feel more frequent moments that resemble something like what calm used to look like, only different. So that is what I am hoping for now. Thanks to all of you wonderful blessed people that are hoping right along with me.
Wednesday, May 6, 2009
Surgical Oncologist # 2 update --- part 2
Doc #2 took us into his office and shuffled through all my paperwork, read reports, asked some basic questions to get up to speed…then he said,
“Are you interested in saving your breast?”
I was immediately perplexed. First of all, was this some kind of trick question? Is anyone not interested in saving their breast? But aside from the ridiculous nature of how the question was posed, all of my research thus far indicates that when there are multiple lumps of invasive cancer there is really no choice – mastectomy. And trust me, I searched, and searched for opposition to that opinion. And how. Boy would I like to hear some opposition!
So in answer to his question I said, ”Well, I am most interested in living as long as possible, with or without breasts.”
He seemed annoyed at my answer and said that went without saying. I bit my tongue in replying that the answer to his question went without saying as well. Um, yes, if I could save my breast I would. Can I just say, “duh!”
So, I am dubious.
(Incidentally, back to Doc #1 for a moment -- you know, that anti-breastfeeding-definitive-mastectomy doc? He said that when I went to NYC they would no doubt tell me what I want to hear, that I could have a lumpectomy. He had no idea where in NYC we were going mind you, he was making an indictment of every single oncologist in the entire city! Now, clearly that man had inferiority issues as an NJ doc. I’ve seen this before, doctors here in the ‘burbs resent us inquiring and thorough types going over the bridge to the city because we think it’s better. But frankly, I don’t have time for bridge & tunnel ego crap now!)
Okay, so anyway, the other thing I don’t like about this Doc #2 is he was pretty dismissive about some treatment methods that I am particularly interested in understanding…but more so this treatment approach would especially make sense if one were trying to save their breast -- so you’d think he would be on top of it.
See, apparently in some cases the trend is to do chemo first, before lumpectomy/mastectomy. The essential reason for this is that even with all the qualifying we can do of cancers now, like that mine is invasive, estrogen receptive, HER2 negative, yada, yada, there are still clearly unknown and perhaps highly individual aspects to each person’s particular case of cancer.
Now, if you give chemo before removing the tumors you can literally see if a specific cocktail of drugs actually affects the tumor because it will shrink. So, not only do you know that this exact cancer is responding to the chosen treatment, but afterwards you get to take out less tumor and surrounding tissue. If one were trying to save a breast, the smaller the tumor the better, no? And even if one weren't, knowing a little more for sure that any stray cancer cells floating around your body don't like this set chemo drug would be good.
However, then there is the issue of the lymph nodes. See, if the cancer has spread to the nodes then it might have spread elsewhere. That’s why they remove some of them, called the sentinel nodes, to biopsy them. Traditionally they remove them during the lumpectomy/mastectomy. But what if we do chemo first? Let’s say that my nodes were cancerous but only just barely…and then I did this preoperative chemo and it shrunk my tumors…it might also nuke the barely detectable cancer cells in the nodes meaning I wouldn’t know the cancer had been there.
The solution is to do a sentinel node dissection first – go in, remove them and check for cancer. Then do the preoperative chemo, then the lumpectomy/mastectomy, then...whatever else. This is a newer standard treatement, not some whacko idea, mind you. But I also want to be clear here…this is my understanding from my own research. I want the doctors to disagree with me if I am incorrect, I'm not approaching this with an attitude of knowing anything.
So, when I raised the question of preoperative chemo with Doc #2 he was incredibly dismissive and acted like what I was asking about was useless and a waste of time, yet couldn’t/wouldn’t really explain why. I mean, it does make sense when you read about it and seems to be a prevalent method so why act like I’m being silly? Silly? For crying out loud, I’m the one with the cancer here, I have a right to know this stuff and asking isni't silly!!!
In my opinion what I have experienced are the two opposite ends of the spectrum regarding women’s breasts and cancer according to the typical male physician:
Doc # 1 thinks, lop it off, it’s just a breast and why would you ever want to actually use it for anything, certainly not breastfeeding – how weird a thing is that to do with a breast.
Doc # 2 thinks that to “disfigure” a woman would be so traumatic and de-feminizing that any chick in her right mind would be willing to risk whatever it took, even her life, to keep her precious boob.
Clearly I’m looking for sensible answers here and not getting any. I don’t like that these two men have been so trivializing of my questions and seem unwilling or unable to explain things to my satisfaction. I am a relatively intelligent person, I could understand what they had to tell me if they deemed it worthwhile to explain.
Not for nothing, but how would anyone without my advantages…supportive husband, good insurance and a decent intellect…be able to navigate any of this???
We have our last scheduled surgical appt Tuesday, Doc # 3…she (yes, I said she) will hopefully be better, maybe even “the one”. If not, I’m thinking there will at least be a Doc #4…perhaps even a # 5. In the meantime I also have an appt Friday with a medical oncologist, also a woman.
Still, I decided to have this doctor #2 order some tests. The BRCA test to see if there is a genetic issue, the PET scan was done to help see if the cancer has spread, and I have an MRI script too – unlike Doc #1 this guy thinks it's still worthwhile despite the fact that I’m lactating (oh troublesome me!) Even though I highly doubt this guy will be the doctor for me, I can always get all these results and take them elsewhere. I thought getting started on the tests was time conserving.
So, that’s the doctor portion of my update. I’ll post some more stuff tomorrow. I’m frankly exhausted...and frustrated. But strangely…still hopeful. Or maybe it's just the Xanax ;)
Bye for now, and thanks so much again (and again, and again, and a thousand times again) for being there.
“Are you interested in saving your breast?”
I was immediately perplexed. First of all, was this some kind of trick question? Is anyone not interested in saving their breast? But aside from the ridiculous nature of how the question was posed, all of my research thus far indicates that when there are multiple lumps of invasive cancer there is really no choice – mastectomy. And trust me, I searched, and searched for opposition to that opinion. And how. Boy would I like to hear some opposition!
So in answer to his question I said, ”Well, I am most interested in living as long as possible, with or without breasts.”
He seemed annoyed at my answer and said that went without saying. I bit my tongue in replying that the answer to his question went without saying as well. Um, yes, if I could save my breast I would. Can I just say, “duh!”
So, I am dubious.
(Incidentally, back to Doc #1 for a moment -- you know, that anti-breastfeeding-definitive-mastectomy doc? He said that when I went to NYC they would no doubt tell me what I want to hear, that I could have a lumpectomy. He had no idea where in NYC we were going mind you, he was making an indictment of every single oncologist in the entire city! Now, clearly that man had inferiority issues as an NJ doc. I’ve seen this before, doctors here in the ‘burbs resent us inquiring and thorough types going over the bridge to the city because we think it’s better. But frankly, I don’t have time for bridge & tunnel ego crap now!)
Okay, so anyway, the other thing I don’t like about this Doc #2 is he was pretty dismissive about some treatment methods that I am particularly interested in understanding…but more so this treatment approach would especially make sense if one were trying to save their breast -- so you’d think he would be on top of it.
See, apparently in some cases the trend is to do chemo first, before lumpectomy/mastectomy. The essential reason for this is that even with all the qualifying we can do of cancers now, like that mine is invasive, estrogen receptive, HER2 negative, yada, yada, there are still clearly unknown and perhaps highly individual aspects to each person’s particular case of cancer.
Now, if you give chemo before removing the tumors you can literally see if a specific cocktail of drugs actually affects the tumor because it will shrink. So, not only do you know that this exact cancer is responding to the chosen treatment, but afterwards you get to take out less tumor and surrounding tissue. If one were trying to save a breast, the smaller the tumor the better, no? And even if one weren't, knowing a little more for sure that any stray cancer cells floating around your body don't like this set chemo drug would be good.
However, then there is the issue of the lymph nodes. See, if the cancer has spread to the nodes then it might have spread elsewhere. That’s why they remove some of them, called the sentinel nodes, to biopsy them. Traditionally they remove them during the lumpectomy/mastectomy. But what if we do chemo first? Let’s say that my nodes were cancerous but only just barely…and then I did this preoperative chemo and it shrunk my tumors…it might also nuke the barely detectable cancer cells in the nodes meaning I wouldn’t know the cancer had been there.
The solution is to do a sentinel node dissection first – go in, remove them and check for cancer. Then do the preoperative chemo, then the lumpectomy/mastectomy, then...whatever else. This is a newer standard treatement, not some whacko idea, mind you. But I also want to be clear here…this is my understanding from my own research. I want the doctors to disagree with me if I am incorrect, I'm not approaching this with an attitude of knowing anything.
So, when I raised the question of preoperative chemo with Doc #2 he was incredibly dismissive and acted like what I was asking about was useless and a waste of time, yet couldn’t/wouldn’t really explain why. I mean, it does make sense when you read about it and seems to be a prevalent method so why act like I’m being silly? Silly? For crying out loud, I’m the one with the cancer here, I have a right to know this stuff and asking isni't silly!!!
In my opinion what I have experienced are the two opposite ends of the spectrum regarding women’s breasts and cancer according to the typical male physician:
Doc # 1 thinks, lop it off, it’s just a breast and why would you ever want to actually use it for anything, certainly not breastfeeding – how weird a thing is that to do with a breast.
Doc # 2 thinks that to “disfigure” a woman would be so traumatic and de-feminizing that any chick in her right mind would be willing to risk whatever it took, even her life, to keep her precious boob.
Clearly I’m looking for sensible answers here and not getting any. I don’t like that these two men have been so trivializing of my questions and seem unwilling or unable to explain things to my satisfaction. I am a relatively intelligent person, I could understand what they had to tell me if they deemed it worthwhile to explain.
Not for nothing, but how would anyone without my advantages…supportive husband, good insurance and a decent intellect…be able to navigate any of this???
We have our last scheduled surgical appt Tuesday, Doc # 3…she (yes, I said she) will hopefully be better, maybe even “the one”. If not, I’m thinking there will at least be a Doc #4…perhaps even a # 5. In the meantime I also have an appt Friday with a medical oncologist, also a woman.
Still, I decided to have this doctor #2 order some tests. The BRCA test to see if there is a genetic issue, the PET scan was done to help see if the cancer has spread, and I have an MRI script too – unlike Doc #1 this guy thinks it's still worthwhile despite the fact that I’m lactating (oh troublesome me!) Even though I highly doubt this guy will be the doctor for me, I can always get all these results and take them elsewhere. I thought getting started on the tests was time conserving.
So, that’s the doctor portion of my update. I’ll post some more stuff tomorrow. I’m frankly exhausted...and frustrated. But strangely…still hopeful. Or maybe it's just the Xanax ;)
Bye for now, and thanks so much again (and again, and again, and a thousand times again) for being there.
Tuesday, May 5, 2009
Surgical Oncologist #2 -- part 1
We left for NYC at 8:30am and returned at 7:00pm, the longest we have ever been away from the kids. Mom said they were fine, but Daniel gave me the biggest hug when I got back and has been on me every since...something as many of you can imagine I am thrilled with beyond words. He really missed me. He also didn't ask to nurse, just wants hugs. Bittersweet relief.
This doctor is somewhat better than the first one, but I'm not sure he's "the one" either. We still have another sugeon appt next Tuesday, and this Friday we have our first medical oncologist appt as well.
Tomorrow, for something different, I have an appt w/a psychiatrist. I see a therapist regularly and have for about 3 years or so, mostly to deal with anxiety and management of my tinnitus. She's wonderful and I will keep seeing her. But she can't prescribe and I may need antidepressents or at least a more steady supply of Xanax. Usually a script for Xanax from my regular primary care doc (30 pills) lasts me almost two years. I went through 30 pills in barely more than a month since this cancer stuff started.
So, it may take me till tomorrow night to fill you in on today's appt. I will say that nothing earth shatteringly bad was added to my plate.
There was even a piece of good news. I am NOT Her2 positive, in simple terms this means the cancer, while invasive is not aggressive. This is a HUGE relief to me and the best possible result.
I also met with some VERY wonderful genetic counselors today who were especially kind-hearted and helpful...and blood was drawn for the BRCA tests (two weeks for results). This will show whether my children are at risk. Keep collective fingers crossed.
Finally, I had a PET scan today to see if the cancer has spread anywhere. It's not the only way they look at that, but it's good to get started on some more info gathering. And don't laugh, but the 45 minutes of IV and then subsequent 30 minutes inside the tube for the scan was the most relaxed I've been in weeks...I even snoozed!
Okay, I know it's not major details, but I'll get to that tomorrow, I promisse. Suffice is to say for now this docs take on thing is far different than doc #1, but I'm not sure that's all good...I'm a bit dubious.
I have a baby boy & little girl to go hug :D
Thank you for your support, dearest friends, especially the posts from yesterday which I now just read. You are making this process more bearable and I cannot express my gratitude enough.
Till tomorrow......
This doctor is somewhat better than the first one, but I'm not sure he's "the one" either. We still have another sugeon appt next Tuesday, and this Friday we have our first medical oncologist appt as well.
Tomorrow, for something different, I have an appt w/a psychiatrist. I see a therapist regularly and have for about 3 years or so, mostly to deal with anxiety and management of my tinnitus. She's wonderful and I will keep seeing her. But she can't prescribe and I may need antidepressents or at least a more steady supply of Xanax. Usually a script for Xanax from my regular primary care doc (30 pills) lasts me almost two years. I went through 30 pills in barely more than a month since this cancer stuff started.
So, it may take me till tomorrow night to fill you in on today's appt. I will say that nothing earth shatteringly bad was added to my plate.
There was even a piece of good news. I am NOT Her2 positive, in simple terms this means the cancer, while invasive is not aggressive. This is a HUGE relief to me and the best possible result.
I also met with some VERY wonderful genetic counselors today who were especially kind-hearted and helpful...and blood was drawn for the BRCA tests (two weeks for results). This will show whether my children are at risk. Keep collective fingers crossed.
Finally, I had a PET scan today to see if the cancer has spread anywhere. It's not the only way they look at that, but it's good to get started on some more info gathering. And don't laugh, but the 45 minutes of IV and then subsequent 30 minutes inside the tube for the scan was the most relaxed I've been in weeks...I even snoozed!
Okay, I know it's not major details, but I'll get to that tomorrow, I promisse. Suffice is to say for now this docs take on thing is far different than doc #1, but I'm not sure that's all good...I'm a bit dubious.
I have a baby boy & little girl to go hug :D
Thank you for your support, dearest friends, especially the posts from yesterday which I now just read. You are making this process more bearable and I cannot express my gratitude enough.
Till tomorrow......
Monday, May 4, 2009
Faking it
I wish I was one of those valiant types that got all stoic and strong in the face of adversity. But I'm not. Today is my first day alone with the kids since I found out. Michael happened to be on vacation last week.
This is a hard day.
Incidentally, before I forget -- tomorrow I see surgeon number two, in NYC. If I don't post I'll be sure to on Weds.
Yesterday, for a little while, I was playing with Daniel and making him laugh and he looked at me with a big smile and said, "Mama happy." That is what he wants...no -- more...it is what he needs. He needs me to be happy and calm, or at least to seem that way. If he is to lose so much he needs to at least see his same old Mama, that normal woman of barely more than a month ago.
It's not that my son has never seen me cry, he has and is typically very sweet. But the past month I've cried to varying degrees every day...several times a day. And since the 27th, since my diagnosis, well, I think I've been crying more of the time than not. His Daddy has been home since I found out, so Daniel has felt safe and turned to him. Which is good, truly, but heartbreaking for me...and thus more tears flow.
I also think that my hormones from the weaning process are out of whack...weaning can be a bit like post partum depression from what I've heard.
Anyway, yesterday Daniel was crying because he wanted to go outside but it was raining. I went to comfort him and he wouldn't come near me, he looked at me like he hated me and screamed at me when I asked if I could pick him up. He only wanted Daddy, even though it was actually Daddy that had said no. He wanted no part of me for hours. I crumpled and wept. I even begged him, yes, even tried to bribe him into coming and giving me a hug or sitting next to me. It was not my finest moment motherhood wise, I know. I so desperately needed to feel forgiven by him that I couldn't keep perspective.
I decided a little rain would hurt neither of us compared to the pain we both seemed to be in and so we went outside. He let me carry him because he didn't like the wet grass, let me hold his hand, and let me pick him a dandelion. Later in the day I put on a sock and started doing puppet antics and he giggled...that's when he said, "Mama happy" and it clicked.
Just how much crying is one very little boy supposed to empathise with? He needs me to be happy.
So now instead of coming in the back room here and there throughout the day to write, I come here to cry. Then I go back out and smile at him. Today I am pretending to be happy. I'm pretending my ass off. It is exhausting beyond belief, but it seems to be working. He is happier than I've seen him all week, and he sat on my lap and pet me and told me he loves my "booful hair".
Oh, and I'll be crazy gluing a wig to my head when mine falls out.
This is a hard day.
Incidentally, before I forget -- tomorrow I see surgeon number two, in NYC. If I don't post I'll be sure to on Weds.
Yesterday, for a little while, I was playing with Daniel and making him laugh and he looked at me with a big smile and said, "Mama happy." That is what he wants...no -- more...it is what he needs. He needs me to be happy and calm, or at least to seem that way. If he is to lose so much he needs to at least see his same old Mama, that normal woman of barely more than a month ago.
It's not that my son has never seen me cry, he has and is typically very sweet. But the past month I've cried to varying degrees every day...several times a day. And since the 27th, since my diagnosis, well, I think I've been crying more of the time than not. His Daddy has been home since I found out, so Daniel has felt safe and turned to him. Which is good, truly, but heartbreaking for me...and thus more tears flow.
I also think that my hormones from the weaning process are out of whack...weaning can be a bit like post partum depression from what I've heard.
Anyway, yesterday Daniel was crying because he wanted to go outside but it was raining. I went to comfort him and he wouldn't come near me, he looked at me like he hated me and screamed at me when I asked if I could pick him up. He only wanted Daddy, even though it was actually Daddy that had said no. He wanted no part of me for hours. I crumpled and wept. I even begged him, yes, even tried to bribe him into coming and giving me a hug or sitting next to me. It was not my finest moment motherhood wise, I know. I so desperately needed to feel forgiven by him that I couldn't keep perspective.
I decided a little rain would hurt neither of us compared to the pain we both seemed to be in and so we went outside. He let me carry him because he didn't like the wet grass, let me hold his hand, and let me pick him a dandelion. Later in the day I put on a sock and started doing puppet antics and he giggled...that's when he said, "Mama happy" and it clicked.
Just how much crying is one very little boy supposed to empathise with? He needs me to be happy.
So now instead of coming in the back room here and there throughout the day to write, I come here to cry. Then I go back out and smile at him. Today I am pretending to be happy. I'm pretending my ass off. It is exhausting beyond belief, but it seems to be working. He is happier than I've seen him all week, and he sat on my lap and pet me and told me he loves my "booful hair".
Oh, and I'll be crazy gluing a wig to my head when mine falls out.
Saturday, May 2, 2009
This is as close to funny as I get now...
...and I ain't laughing.
This wasn’t supposed to happen.
You know why?
I’m a vegan. I mean, come on! Veg-an, it’s got “veg” in the freakin’ name for a reason people! I eat more vegetables than anyone I know and they’re supposed to protect me from this kinda crap. All the web sites and books that address cancer-fighting nutrition recommend a diet like what I already eat. Just how much kale is one woman supposed to consume???
I lost 130 lbs before I hit my forties. That’s a whole, albeit skinnier than me, person! I’m not obese. I’m supposed to be a roll model for clean living and this cancer shit is messing with my image…figuratively and literally.
I breastfed my first child. Hello, wasn’t that was supposed to protect me from this, too? That’s not why I did it, but still. She was a preemie who nursed every two hours for the first two years. Really.
I am breastfeeding my second child. Getting cancer while you are actually breastfeeding is supposed to be highly unlikely. Don’t even get me started. My eyes are going to dry up and roll out of my head from the salt in my tears.
I quit smoking. I mean, if it were lung cancer I could see it, I was 38 when I quit.
I rarely drink (till now, anyway, lol).
My mother’s cancer was supposed to be due to her ridiculous over use of HRT. We’re talking like over 15 years. She thought it made her look & feel young. You should see her now after the chemo and radiation. I would have just had a facelift and taken some vitamins.
Even though my mom has breast cancer she’s already 71 and has a really good prognosis for years to come. She got to have a lumpectomy too. And she’s single, celibate and a prude. I’m just sayin’.
Three out of four of my grandparents lived to be a very ripe old age with no diseases and they were an unhealthy bunch – the one that didn’t died after a series of strokes because of a genetic mutation called thrombophilia, but he didn’t know he had it because no one knew that kind of stuff back then. It was the dark ages, the 60’s, when I was a kid.
My dad is deceased, one year ago this month. He was 71. He died a thrombophilia related death, too, like his father. Coronary thrombosis, a heart attack. He knew he had the genetic predisposition, but chose to ignore it. He was a man who thought he knew everything. This time he was definitely wrong and I was totally right, I even have proof. Only I can’t tell him, cause he’s dead, that's the proof. Irony doesn't do it justice. Oh, and he was a really, really, REALLY mean father. He died peacefully in his sleep. With his new wife by his side, who inherited everything.
I do know I have thrombophilia so I can take care of myself, thereby beating the odds. I found that out by almost dying once, so haven't I already been there done that? At least close enough?
But even still, it was a blood clot that was supposed to get me in the end, not this. Oh, but wait, there's more -- risk of blood clots are highly increased when you have cancer.
Seriously?
I know.
Unbelievable.
Bitter, no, why do you ask?
This wasn’t supposed to happen.
You know why?
I’m a vegan. I mean, come on! Veg-an, it’s got “veg” in the freakin’ name for a reason people! I eat more vegetables than anyone I know and they’re supposed to protect me from this kinda crap. All the web sites and books that address cancer-fighting nutrition recommend a diet like what I already eat. Just how much kale is one woman supposed to consume???
I lost 130 lbs before I hit my forties. That’s a whole, albeit skinnier than me, person! I’m not obese. I’m supposed to be a roll model for clean living and this cancer shit is messing with my image…figuratively and literally.
I breastfed my first child. Hello, wasn’t that was supposed to protect me from this, too? That’s not why I did it, but still. She was a preemie who nursed every two hours for the first two years. Really.
I am breastfeeding my second child. Getting cancer while you are actually breastfeeding is supposed to be highly unlikely. Don’t even get me started. My eyes are going to dry up and roll out of my head from the salt in my tears.
I quit smoking. I mean, if it were lung cancer I could see it, I was 38 when I quit.
I rarely drink (till now, anyway, lol).
My mother’s cancer was supposed to be due to her ridiculous over use of HRT. We’re talking like over 15 years. She thought it made her look & feel young. You should see her now after the chemo and radiation. I would have just had a facelift and taken some vitamins.
Even though my mom has breast cancer she’s already 71 and has a really good prognosis for years to come. She got to have a lumpectomy too. And she’s single, celibate and a prude. I’m just sayin’.
Three out of four of my grandparents lived to be a very ripe old age with no diseases and they were an unhealthy bunch – the one that didn’t died after a series of strokes because of a genetic mutation called thrombophilia, but he didn’t know he had it because no one knew that kind of stuff back then. It was the dark ages, the 60’s, when I was a kid.
My dad is deceased, one year ago this month. He was 71. He died a thrombophilia related death, too, like his father. Coronary thrombosis, a heart attack. He knew he had the genetic predisposition, but chose to ignore it. He was a man who thought he knew everything. This time he was definitely wrong and I was totally right, I even have proof. Only I can’t tell him, cause he’s dead, that's the proof. Irony doesn't do it justice. Oh, and he was a really, really, REALLY mean father. He died peacefully in his sleep. With his new wife by his side, who inherited everything.
I do know I have thrombophilia so I can take care of myself, thereby beating the odds. I found that out by almost dying once, so haven't I already been there done that? At least close enough?
But even still, it was a blood clot that was supposed to get me in the end, not this. Oh, but wait, there's more -- risk of blood clots are highly increased when you have cancer.
Seriously?
I know.
Unbelievable.
Bitter, no, why do you ask?
Friday, May 1, 2009
My unfiltered thoughts
I cried the whole way home from the doctor yesterday. I raged, I wept, I mourned. I had intended to pump my “good” remaining breast and dump the poisonous milk throughout the chemo treatments or whatever, and when it was all done, many months from now, if Daniel wanted to he could return to nursing. Somehow the thought that I could offer him that, that this wasn’t Mama taking it away forever and ever, somehow that made the thought of all that comes next a little more bearable. He may by then be completely uninterested. But in the end it would be his choice and knowing I gave that back to him just would make me feel…well, it’s just hard to explain without weeping so hard I can’t type.
Anyway, if this doctor is right about the milk-making hormones and some effect on breast cancer, then my hopes are out of the question. I will double and triple check his opinion, as my gut tells me something is off about that.
It may seem strange to many of you, in the scheme of everything I am facing, to worry so much about nursing a toddler of 2.5, something clearly many women who are devoted breast-feeders don’t even do. He is certainly old enough to be weaned by most Western standards. I just don’t happen to subscribe to those standards (or very many other ones, actually, lol). Btw, did you know the average age of weaning worldwide is over five years old?
Besides, right now it’s about alot more than that.
To my son, I am a world…a world of suckling warmth, loving eye contact, stroking each other’s hair (“Mama, your hair so booful” as he pets mine, also soon to be gone)…I am the one that holds him on my chest while he rests, when he hurts he wants to nurse, when he’s tired he wants my breast to drift off to sleep. I cuddle with him in other ways, yes, but it is not the same, not physically, not emotionally, for him or me.
While I undergo all of this and am ill, deformed, bald, and weak, I can still be there for my Megan in many of the same ways I am today. I can talk to her about violin lessons and bugs, especially caterpillars (she’s crazy for tent worms, most people mistake them for Gypsy moths but Meggie knows the difference) she loves Meebas and her Petz5 computer game and certain TV shows and dogs -- any creatures really, she’s a true nature lover and very earth science-minded. I can still share all that with her while hairless, breastless and in between bouts of puking into a bowl if I have to. She’ll suffer some losses and I grieve for all of that too, oh so deeply. But it won’t compare to her baby brother.
To Daniel, to a toddler, Mama is different. Daniel is very bright, he’s very verbal for a child his age, but he is still only two. I am soft breasts and long hair and carrying him on my hip or crawling on the floor playing Thomas the Train. I will be able to offer none of that, perhaps for a long time, perhaps some of it gone forever. I am about to take myself away from him, piece by piece, bit by bit. To him it matters not why. Yes, someday he will understand how much I went through, how my heart broke, my very soul ached beyond a describable pain. But today, now, a huge part of who I am is leaving him. His world as he knows it is about to crumble and to him in some primal way, it will be me doing it.
Knowing this is tearing me apart more than I can stand. I look at him and weep. He keeps asking me, “Wass a matta Mama, you okay?” I am trying to prepare him, telling him that now Mama’s other ta-ta (his name for my breasts) is sick and that soon I can’t give him any more. I keep avoiding the circumstances when he used to like to nurse. Our morning routine has changed, afternoons when he's cranky I hide away...but bed times…that’s the one that I’ve yet to let go of. He says to me with the sweetest smile, “Now we ready ta-ta poh?” (poh is what he calls the pillow he lays on astride me)…he’s so happy to finally get what he wants, finally get that blissful bonding that just can’t be duplicated or replaced. I’m sorry I don’t mean to suggest non-breastfeeding moms don’t have that…I think if you never did nurse than you developed that bliss, that bond, in another way, I know that. But I have nursed, and this is our way and I’m so damn sad and angry and grief stricken that this is happening to my beautiful baby boy I can’t cry hard enough, scream loud enough, mourn deeply enough. It is beyond unfair.
I’m sorry. I have to stop.
Anyway, if this doctor is right about the milk-making hormones and some effect on breast cancer, then my hopes are out of the question. I will double and triple check his opinion, as my gut tells me something is off about that.
It may seem strange to many of you, in the scheme of everything I am facing, to worry so much about nursing a toddler of 2.5, something clearly many women who are devoted breast-feeders don’t even do. He is certainly old enough to be weaned by most Western standards. I just don’t happen to subscribe to those standards (or very many other ones, actually, lol). Btw, did you know the average age of weaning worldwide is over five years old?
Besides, right now it’s about alot more than that.
To my son, I am a world…a world of suckling warmth, loving eye contact, stroking each other’s hair (“Mama, your hair so booful” as he pets mine, also soon to be gone)…I am the one that holds him on my chest while he rests, when he hurts he wants to nurse, when he’s tired he wants my breast to drift off to sleep. I cuddle with him in other ways, yes, but it is not the same, not physically, not emotionally, for him or me.
While I undergo all of this and am ill, deformed, bald, and weak, I can still be there for my Megan in many of the same ways I am today. I can talk to her about violin lessons and bugs, especially caterpillars (she’s crazy for tent worms, most people mistake them for Gypsy moths but Meggie knows the difference) she loves Meebas and her Petz5 computer game and certain TV shows and dogs -- any creatures really, she’s a true nature lover and very earth science-minded. I can still share all that with her while hairless, breastless and in between bouts of puking into a bowl if I have to. She’ll suffer some losses and I grieve for all of that too, oh so deeply. But it won’t compare to her baby brother.
To Daniel, to a toddler, Mama is different. Daniel is very bright, he’s very verbal for a child his age, but he is still only two. I am soft breasts and long hair and carrying him on my hip or crawling on the floor playing Thomas the Train. I will be able to offer none of that, perhaps for a long time, perhaps some of it gone forever. I am about to take myself away from him, piece by piece, bit by bit. To him it matters not why. Yes, someday he will understand how much I went through, how my heart broke, my very soul ached beyond a describable pain. But today, now, a huge part of who I am is leaving him. His world as he knows it is about to crumble and to him in some primal way, it will be me doing it.
Knowing this is tearing me apart more than I can stand. I look at him and weep. He keeps asking me, “Wass a matta Mama, you okay?” I am trying to prepare him, telling him that now Mama’s other ta-ta (his name for my breasts) is sick and that soon I can’t give him any more. I keep avoiding the circumstances when he used to like to nurse. Our morning routine has changed, afternoons when he's cranky I hide away...but bed times…that’s the one that I’ve yet to let go of. He says to me with the sweetest smile, “Now we ready ta-ta poh?” (poh is what he calls the pillow he lays on astride me)…he’s so happy to finally get what he wants, finally get that blissful bonding that just can’t be duplicated or replaced. I’m sorry I don’t mean to suggest non-breastfeeding moms don’t have that…I think if you never did nurse than you developed that bliss, that bond, in another way, I know that. But I have nursed, and this is our way and I’m so damn sad and angry and grief stricken that this is happening to my beautiful baby boy I can’t cry hard enough, scream loud enough, mourn deeply enough. It is beyond unfair.
I’m sorry. I have to stop.
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