Hi All,
First of all, THANK YOU for all the great comments. I don't know why we feel the need to ask for permission to cry or be sad, but I suppose my last post was a way of asking and everyone said, 'Go ahead', and then I immediately felt better.
My mood was also helped by some great friends of mine, Lauren and Sarah--past roommates and now forever friends. The other day I was crying with Lauren, complaining about how all I wanted to do was go outside and garden. I've mentioned my garden before. The deal is, Greg and I fell in love with our house because it has all this land. After we moved in, our favorite thing to do every morning was make tea and go outside in our bathrobes and 'walk the land', because literally, you could walk it. So the irony though is that we aren't gardeners whatsoever. I had no idea what the difference between an annual and perennial plant was before we bought this house or why you needed to prune anything at all. The task of this land is overwhelming and frankly, for the most part, Greg and I aren't up for it. We want to be. We aspire to be. But it's work and it takes time. Time we don't have. Except now, now I have the time and I am stricken immobile by a double mastectomy hence the reason why I was whining and sobbing the other day. Actually, the day before my surgery, I realized I wasn't going to be able to do any planting for awhile and I went out and bought a few flowery shrubs and stayed out till dusk like some sort of gardening fiend putting things in the earth so I could watch something grow while I healed. But even that barely showed a change. The potential of all this land overwhelmed me and I felt like I was letting the season go. So Lauren and Sarah offered to get some more plants and do some gardening for me. How great are these woman?!
So now my garden is sprouting some color and new fresh blooms. Speaking of sprouting, I have some more new growth to report.
It's mainly just fuzz right now and it feels really weird, like baby hair. In fact, Sadie still has more than me. My eyebrows are coming in too. They look like a shadow above my eyes. Someone asked me the other day if I was wearing makeup, which is pretty funny (just is), but seriously, compared to my bland hairless face before, this new growth makes me look like I am.
And finally, to finish this whole growing and sprouting theme, I had my first expander appointment on Wednesday. Finally. I was really looking forward to this appointment, so much so, I wore an outfit for the first time in weeks (it's been yoga pants and tank tops for quite some time).
You can see my 'bulb' still attached by my hip. This is probably why I was wearing yoga pants and tank tops--drainage bulbs aren't to conducive to style. The doctor also removed it. They sucked, literally.
Anyway, I was really looking forward to this appointment because it was an unknown. I had no idea what to expect in terms of pain or discomfort. I am happy to report the actual procedure is not that bad. First they put some local anesthetic in my skin. Then the plastic surgeon finds my port (hole into the expander) with a magnet. Then with a syringe and a long needle (yes I looked, fairly scary), he slowly injects saline in to the expanders under my skin. I'll do this roughly three or four more times before my breasts are the size I want them to be, which again, is so weird. That I am choosing my size! Today, I went shopping with my friend, Amber, and we shared a room at Anthropologie with a blessed sleeping Sadie (even through all the dressing room door slamming) and she told me the size I am now (I would guess a small B?) is in her words, 'like a normal person', because before this surgery, I was a double D (!). So, I suppose one good thing is that cancer has allowed me to experience some things I would never experience before: Short hair and small breasts. I must be feeling better to be looking on the bright side again.
Love,
Rosalie
Thursday, May 29, 2008
Sunday, May 25, 2008
Strong and Amazing
Hi All,
Been feeling a little depressed. Not that I don't have a pretty good excuse to be depressed, but still, being depressed is really bumming me out which is kind of the problem of being sad in general. It just makes you more sad. I have been crying a lot. At first, I thought it was because I am so sick of being uncomfortable from the mastectomy, which I am. A little bit. All the time. Then I thought I was crying because I am sick of waiting. Waiting for this process to be done (the expanders, the saline injections, the implants) and I have never been one to have a lot of patience. But really, anything and everything makes me cry. Like right now, my neighbors across the creek are having some sort of weekend evening gathering. A bunch of them, with their dogs and their guitars sitting on their deck with a fire going singing songs like Stand by Me, and Yesterday and Leaving on a Jet Plane by Carol King. And it makes me want to cry. Now normally, I would be laughing at the Kumbaya moment, snickering even. But now I am just crying. Frida however is barking. Speaking of Frida, I just cried because I caught her with one of my crazy chemo side effect helping pills, batting it around like a bug. It was all soft and wet from her drool, but it was intact. Phew!
Kumbaya moment happening right now
Here's the thing. Ever since my diagnosis, I have gotten a lot of feedback that I am so 'strong'. However, I don't think anyone knows how strong they are until they are forced to be that strong. Everyone is as strong as the strength they are using right now to deal with whatever has been dealt to them. Meaning, I am no different than anyone else. I just got cancer, that's all. Sometimes I am told I am 'amazing'. I am telling you, I am not amazing. What is really amazing is that anyone has to go through this at all. That there is this disease called breast cancer and in order to fight it you have to go through this whole rigmarole called 'treatment' where you get fluids injected in your veins that kill fast growing cells and your hair falls off and you are tired all the time and your nails die and your feet feel like they are fire and your tongue is so sensitive even talking hurts. And then, just when you're feeling better, you get your breasts cored out and plastic placed in the space they used to occupy. Now that's amazing. But me? Again, I am just like anyone else.
To be clear, I am not saying telling someone they are strong and amazing aren't wonderful things to say to people going through something rough like cancer, because they are, and in the moment, those comments made me feel great. But, I think, after awhile, it got to me because of the pressure. The pressure to be strong. To be amazing. To keep it up. To smile and make jokes while losing my hair. And I did joke. I joked I looked like 'Aunt' Fester in my fluffy pink robe. I even had a photo taken because I can have a sense of humor about my cancer.
I especially like the use of the energy efficient bulb versus the standard the original Fester is sporting below.
And when I walk around in the garden, in my floral India robe, Greg calls me the The Little Buddha and always asks what wisdom I have to offer today. Or if it's the white robe, he references Kung Fu and says something about Young Grasshopper.
I especially like how the light is shining off my bald head here. I would come to me for advice too looking like this.
Then there's the pressure to look on the bright side when it comes to my mastectomy. To concentrate on the fact that I will have perky, perfect breasts for the rest of my life when in reality, what I know is that I will forever be sort of numb and I will never feel hugs the same way again. And I am a hugger. A good one too.
There's this pressure on me to be celebrating. Celebrating that I am cancer free. And it is pretty wonderful that I am free of it--after having a tumor the size of a lemon. After having stage III triple negative breast cancer (which is kind of the worst of it). But all I can think about is this: Cancer free for now. And I also think: Why me? Why was it me that got the gene and had to go through this. And why while I was pregnant?
So for a long time now, I have been strong and amazing and I think just this last week, I decided I'd rather be crying.
Sometimes the crying feels really good, like a release, so I know it's what I need. Sometimes it feels awful and I start to feel sorry for myself and for Sadie.
So, speaking of Sadie. Sadie is amazing. Sometimes, I have to look away when she smiles because it fills me with this intense emotional feeling that is so strong, it's like falling in love times a million. It's like your heart breaking and healing at the same time.
If any of you are wondering why Sadie isn't smiling in these photos, it's because you got to work to make this kid smile. But again, when she does, it's just unbelievable.
I know I will get through this. As this whole experience is coming to an end ( and I have to remind myself it will end and life will go back to normal), I am feeling it now more than ever. And not feeling very strong and certainly not amazing.
Love,
Rosalie
Been feeling a little depressed. Not that I don't have a pretty good excuse to be depressed, but still, being depressed is really bumming me out which is kind of the problem of being sad in general. It just makes you more sad. I have been crying a lot. At first, I thought it was because I am so sick of being uncomfortable from the mastectomy, which I am. A little bit. All the time. Then I thought I was crying because I am sick of waiting. Waiting for this process to be done (the expanders, the saline injections, the implants) and I have never been one to have a lot of patience. But really, anything and everything makes me cry. Like right now, my neighbors across the creek are having some sort of weekend evening gathering. A bunch of them, with their dogs and their guitars sitting on their deck with a fire going singing songs like Stand by Me, and Yesterday and Leaving on a Jet Plane by Carol King. And it makes me want to cry. Now normally, I would be laughing at the Kumbaya moment, snickering even. But now I am just crying. Frida however is barking. Speaking of Frida, I just cried because I caught her with one of my crazy chemo side effect helping pills, batting it around like a bug. It was all soft and wet from her drool, but it was intact. Phew!
Kumbaya moment happening right now
Here's the thing. Ever since my diagnosis, I have gotten a lot of feedback that I am so 'strong'. However, I don't think anyone knows how strong they are until they are forced to be that strong. Everyone is as strong as the strength they are using right now to deal with whatever has been dealt to them. Meaning, I am no different than anyone else. I just got cancer, that's all. Sometimes I am told I am 'amazing'. I am telling you, I am not amazing. What is really amazing is that anyone has to go through this at all. That there is this disease called breast cancer and in order to fight it you have to go through this whole rigmarole called 'treatment' where you get fluids injected in your veins that kill fast growing cells and your hair falls off and you are tired all the time and your nails die and your feet feel like they are fire and your tongue is so sensitive even talking hurts. And then, just when you're feeling better, you get your breasts cored out and plastic placed in the space they used to occupy. Now that's amazing. But me? Again, I am just like anyone else.
To be clear, I am not saying telling someone they are strong and amazing aren't wonderful things to say to people going through something rough like cancer, because they are, and in the moment, those comments made me feel great. But, I think, after awhile, it got to me because of the pressure. The pressure to be strong. To be amazing. To keep it up. To smile and make jokes while losing my hair. And I did joke. I joked I looked like 'Aunt' Fester in my fluffy pink robe. I even had a photo taken because I can have a sense of humor about my cancer.
I especially like the use of the energy efficient bulb versus the standard the original Fester is sporting below.
And when I walk around in the garden, in my floral India robe, Greg calls me the The Little Buddha and always asks what wisdom I have to offer today. Or if it's the white robe, he references Kung Fu and says something about Young Grasshopper.
I especially like how the light is shining off my bald head here. I would come to me for advice too looking like this.
Then there's the pressure to look on the bright side when it comes to my mastectomy. To concentrate on the fact that I will have perky, perfect breasts for the rest of my life when in reality, what I know is that I will forever be sort of numb and I will never feel hugs the same way again. And I am a hugger. A good one too.
There's this pressure on me to be celebrating. Celebrating that I am cancer free. And it is pretty wonderful that I am free of it--after having a tumor the size of a lemon. After having stage III triple negative breast cancer (which is kind of the worst of it). But all I can think about is this: Cancer free for now. And I also think: Why me? Why was it me that got the gene and had to go through this. And why while I was pregnant?
So for a long time now, I have been strong and amazing and I think just this last week, I decided I'd rather be crying.
Sometimes the crying feels really good, like a release, so I know it's what I need. Sometimes it feels awful and I start to feel sorry for myself and for Sadie.
So, speaking of Sadie. Sadie is amazing. Sometimes, I have to look away when she smiles because it fills me with this intense emotional feeling that is so strong, it's like falling in love times a million. It's like your heart breaking and healing at the same time.
If any of you are wondering why Sadie isn't smiling in these photos, it's because you got to work to make this kid smile. But again, when she does, it's just unbelievable.
I know I will get through this. As this whole experience is coming to an end ( and I have to remind myself it will end and life will go back to normal), I am feeling it now more than ever. And not feeling very strong and certainly not amazing.
Love,
Rosalie
Sunday, May 18, 2008
Mastectomy Rant
So I did a chemo rant a few weeks back. You can read it here. And now, it's time for a mastectomy rant. Again, trying to concentrate on the good things. Like the fact I am CANCER FREE and that this is the last baton I have to carry in the relay race of my life. That Sadie is growing up strong and pudgy and super kissable yummy. That I have more than enough friends and family to be here with me every day bringing me food, stories, laughs and support. That I have a husband who just bestowed me with beautiful diamond earrings for my first mothers day and hasn't completely lost his mind watching his wife fight through cancer all the while his house has been infiltrated with well wishers and do gooders who invariably don't realize he too is freaked out and scared and could probably use a pat on the back every once and awhile (well Amber H realizes this and that's why she buys him orange tic tacs in case he doesn't know this).
I am really trying to do this. But, it's hard to see all of it when plastic tubes, sutured under my skin are poking out and draining fluid from my body down to bulbs that are pinned to my clothes so that I look like a science experiment on the loose. Oh yes, this is made worse by my bald head and my caved in chest. I can lift my arms, but I can't press down to open up a safety proofed bottle of pills. What's up with that? I can get the cereal down off the refrigerator, but I can't turn on the water in the shower. I can feed Sadie on a boppie, but I can't lift her to burp her. It's like we need a guide to the muscles in our upper body after surgery so we know what's what. My chest is numb, but in this queer sensitive numb way that I don't want anyone touching it, which means I can't hold Sadie. Her little legs pump and kick and then I have to push her over to somebody else and that makes me feel awful. I just want to pull her close and nuzzle her little neck. But instead, I have to watch other people feed and change her, lift her out of her crib after a nap and soothe her down for another. And it's not like these are bad people. These are the GREATEST people. Like my friend Sharen Brown and Sara Roditi who would rather hold her in their arms while she naps and I have to tell them to put her in her crib for consistency's sake (because my pediatrician told me to) and they reluctantly oblige. And Frida, Frida gets her friend Johannah (who stayed here while we were in the hospital having Sadie) come all the way out to take her on this epic hike up in to the hills of Forest Knolls, even on the hot days. She is getting better love and more attention than when I have nothing going on with me at all. But still, I sit here, hating my weird sagging compressed looking breasts, these tubes, the pain under my arms, my strange dark nipples and am worried. Worried that I won't even want to hold Sadie to my chest, because my chest will be two foreign bags of silicone and not me and I will never feel her weight, her skin, her pressure the way I did before.
Worried that yeah, I beat breast cancer, but it will come back in some other way, in my pancreas like my mom.
Worried that sure, this is all done, but would if my body rejects the implants and I have to go through this again.
Worried that in a few years, I have to make a decision about my ovaries and if surgery on my breasts is hard, imagine the recovery of a surgery that goes through the stomach to get at my reproductive parts and ripping them out?
Worried that all these people, though WONDERFUL people, taking care of Sadie means that when it's finally just me and her, she'll look at me and wonder who the hell I am.
I am spinning.
This is me spinning.
Love,
Rosalie
Happier pre-mastectomy days when I didn't know how much I was going to miss this.
The walking science experiment. About to get my bulbs drained. So much fun.
I am really trying to do this. But, it's hard to see all of it when plastic tubes, sutured under my skin are poking out and draining fluid from my body down to bulbs that are pinned to my clothes so that I look like a science experiment on the loose. Oh yes, this is made worse by my bald head and my caved in chest. I can lift my arms, but I can't press down to open up a safety proofed bottle of pills. What's up with that? I can get the cereal down off the refrigerator, but I can't turn on the water in the shower. I can feed Sadie on a boppie, but I can't lift her to burp her. It's like we need a guide to the muscles in our upper body after surgery so we know what's what. My chest is numb, but in this queer sensitive numb way that I don't want anyone touching it, which means I can't hold Sadie. Her little legs pump and kick and then I have to push her over to somebody else and that makes me feel awful. I just want to pull her close and nuzzle her little neck. But instead, I have to watch other people feed and change her, lift her out of her crib after a nap and soothe her down for another. And it's not like these are bad people. These are the GREATEST people. Like my friend Sharen Brown and Sara Roditi who would rather hold her in their arms while she naps and I have to tell them to put her in her crib for consistency's sake (because my pediatrician told me to) and they reluctantly oblige. And Frida, Frida gets her friend Johannah (who stayed here while we were in the hospital having Sadie) come all the way out to take her on this epic hike up in to the hills of Forest Knolls, even on the hot days. She is getting better love and more attention than when I have nothing going on with me at all. But still, I sit here, hating my weird sagging compressed looking breasts, these tubes, the pain under my arms, my strange dark nipples and am worried. Worried that I won't even want to hold Sadie to my chest, because my chest will be two foreign bags of silicone and not me and I will never feel her weight, her skin, her pressure the way I did before.
Worried that yeah, I beat breast cancer, but it will come back in some other way, in my pancreas like my mom.
Worried that sure, this is all done, but would if my body rejects the implants and I have to go through this again.
Worried that in a few years, I have to make a decision about my ovaries and if surgery on my breasts is hard, imagine the recovery of a surgery that goes through the stomach to get at my reproductive parts and ripping them out?
Worried that all these people, though WONDERFUL people, taking care of Sadie means that when it's finally just me and her, she'll look at me and wonder who the hell I am.
I am spinning.
This is me spinning.
Love,
Rosalie
Happier pre-mastectomy days when I didn't know how much I was going to miss this.
The walking science experiment. About to get my bulbs drained. So much fun.
Wednesday, May 14, 2008
The Bandages are Already Off
Hi All,
I have now seen the skin that used to hold my breasts. I will spare you the visual since it's not pretty. My nipples, which I am very lucky I got to keep, are the scariest. Here's why--the skin is dying. Like a scab from inside, the skin is dying and darkening. It will regenerate, and become pink again, but until then, I have nipples the color of red grapes, wait, I am trying to write pretty. Let me get this straight. The color of black olives. Ugh. Other than that, my simile of nursing twenty babies is about right on.
Next week I get 100 cc of saline pumped in to the expanders they put inside behind my pectoral muscles and my doctor says it will look like I nursed 10 babies instead and so on and so on until I say 'when' and then the expanders get swapped for the permanent silicone implants. All in all, I won't be tank top ready for two months.
Anyway, preliminary official pathology reports show no cancer like we thought. So amazing! Still waiting on the reports from the nodes, but I have to think I am on a roll here. Speaking of waiting. I can tell you already I am going to start complaining very soon about driving to SF for these doctor visits, being away from Sadie, only to wait, and wait and wait all while wearing a cotton gown perched on an exam table. Thank God for Greg today because he had me laughing doing his 'doctor' routine (he's got this voice and mannerism thing he does--you have to be there) so hard I had to tell him to stop because of the pain. I mean I just had a double mastectomy! Though really, I have no right to complain considering there are other people, in other exam rooms, alone, possibly hearing that their cancer is inoperable or that their tumor isn't shrinking from chemo. I am so lucky and I know it.
Other than that, no news to report. The baby is doing great. I've got to commit to more tummy time. My friend Sasha was over today and had her on her belly and she lifted her little head like a champ, looking around and being such a baby. Sasha is great. She's got three kids of her own, but arrives with a ton of energy. Her and Connie, friend of the family, held down the fort with the baby while I was in the city getting my boobs checked out. They totally reorganized my porch and it looks great, and clean and summer ready. The garden is starting to bloom and I can't help but see the metaphor in that as I watch my chest slowly blossom as well.
Love,
Rosalie
Laura removing my bandages. I am not grimacing in pain, but because it feels really weird to have your skin touched and not feel the sensation. My breasts are numb. Sorry if this photo is too much information.
My breast reconstruction team: Laura Esserman--the breast cancer surgeon, Mary (Laura's assistant) and Dr. Foster, the plastic surgeon and me.
Me, in recovery mode, still able to feed Sadie thanks to the Boppy.
The garden front, from the porch.
The garden from the back, with Greg watering.
I have now seen the skin that used to hold my breasts. I will spare you the visual since it's not pretty. My nipples, which I am very lucky I got to keep, are the scariest. Here's why--the skin is dying. Like a scab from inside, the skin is dying and darkening. It will regenerate, and become pink again, but until then, I have nipples the color of red grapes, wait, I am trying to write pretty. Let me get this straight. The color of black olives. Ugh. Other than that, my simile of nursing twenty babies is about right on.
Next week I get 100 cc of saline pumped in to the expanders they put inside behind my pectoral muscles and my doctor says it will look like I nursed 10 babies instead and so on and so on until I say 'when' and then the expanders get swapped for the permanent silicone implants. All in all, I won't be tank top ready for two months.
Anyway, preliminary official pathology reports show no cancer like we thought. So amazing! Still waiting on the reports from the nodes, but I have to think I am on a roll here. Speaking of waiting. I can tell you already I am going to start complaining very soon about driving to SF for these doctor visits, being away from Sadie, only to wait, and wait and wait all while wearing a cotton gown perched on an exam table. Thank God for Greg today because he had me laughing doing his 'doctor' routine (he's got this voice and mannerism thing he does--you have to be there) so hard I had to tell him to stop because of the pain. I mean I just had a double mastectomy! Though really, I have no right to complain considering there are other people, in other exam rooms, alone, possibly hearing that their cancer is inoperable or that their tumor isn't shrinking from chemo. I am so lucky and I know it.
Other than that, no news to report. The baby is doing great. I've got to commit to more tummy time. My friend Sasha was over today and had her on her belly and she lifted her little head like a champ, looking around and being such a baby. Sasha is great. She's got three kids of her own, but arrives with a ton of energy. Her and Connie, friend of the family, held down the fort with the baby while I was in the city getting my boobs checked out. They totally reorganized my porch and it looks great, and clean and summer ready. The garden is starting to bloom and I can't help but see the metaphor in that as I watch my chest slowly blossom as well.
Love,
Rosalie
Laura removing my bandages. I am not grimacing in pain, but because it feels really weird to have your skin touched and not feel the sensation. My breasts are numb. Sorry if this photo is too much information.
My breast reconstruction team: Laura Esserman--the breast cancer surgeon, Mary (Laura's assistant) and Dr. Foster, the plastic surgeon and me.
Me, in recovery mode, still able to feed Sadie thanks to the Boppy.
The garden front, from the porch.
The garden from the back, with Greg watering.
Monday, May 12, 2008
Keeping You All Abreast
Hello Everyone,
Thanks to all you of you who posted prayers and good wishes. It was nice to come home to.
I was discharged from the hospital Saturday early afternoon after spending the night Friday night, after going through five hours of surgery on Friday morning. I don't think the bulk of the event hit me until last Thursday evening, after I scrubbed my body with the required Herbclens (the soap you see filling dispensers along all hospital walls and exam rooms) to lower the risk of infection during surgery and crawled in to bed, the last night sleeping with my body as I was born, whole and complete. That fact, and the impending pain had been weighing heavy on my mind.
So, surgery--the thing about surgery is you have no recollection of it, being put out completely. One moment I was in my hospital room answering for the millionth time what my name and birthday was, getting the hospital ID bracelets on, the gown, the socks, meeting my nurses and putting my belongings in to labeled hospital bags and of course getting the required IV stuck in to my hand. So sick of IVs. Then I was waking up with this enormous pressure on my chest feeling like a chainsaw had hacked at me through my underarms and I was put back together with sticks and leaves. I thought I would feel pain on my breasts. But here's the thing. I didn't have breasts to feel pain through. The pain is actually under your arms where the lymph nodes have been taken away. I also was hooked up. Hooked up to oxygen. Hooked up to an IV. Hooked up to these leg cuffs that went on and off to keep my circulation going. It was either have them on, or walk six times around the hospital floor every hour. Considering I couldn't see how I was going to get up just to pee, I had to accept the cuffs. I wasn't aware of my removed breasts until the nurses came to help me up to go to the bathroom and I glimpsed down in to the drape of my gown and saw only two large peices of gauze sealed down with plastic tape instead of what I usually saw, which was, my breasts. You can see how they 'spared' the skin and nipple' which is why it's called skin sparing surgery. Basically my breasts look like the breasts of a woman who had a small chest, but nursed like twenty babies throughout her life. They look like skin envelopes. Envelopes the doctor will fill up later with saline and then silicone. The other big adjustment is the bulbs. I have one sutured in under each breast to collect fluid through thin tubes under my skin. They work by suction to draw out all the excess fluid my body is producing in response to the trauma. For now, my body can't absorb it on its own. Until it can, I have to have these bulbs hanging off me like some sort of alien parasitical appendage. Greg was taught how to empty them and so far, it's been OK. He's been great with the nursing care, even when I turn in to a whiny three year old (which of course is only in his presence, poor guy). We record the amount of fluid. I hope they are under 30cc/day soon because that means they get to come out. They pin to whatever loose fitting shirt I am wearing (another good thing about going through cancer and a baby at the same time--I have lots of nice loose fitting maternity shirts lying around that I don't care if they get blood splattered).
So, happy mother's day to me. I celebrated it without one of the few part of my body that defines woman as mothers. Ugh I am being so dramatic, but I see these little ironies every where I turn. My entire family came over to distract and to help, the sisters, Dan, the aunties, my dad and his girlfriend Patty. The neighbors stopped by and I really had no problem opening up my robe and showing them where my breasts once were because really, it's not me on my chest, but the handy work of two surgeons. It's like my body is a project site and everyone wants to see how it's coming along. Once complete, maybe I will be more modest.
So here's the GREAT news. My surgeon found no cancer in my breasts. She felt no cancer either and even better--there was no cancer in my lymph nodes, even the sentinel lymph node which is the first node in the strand and most definitely would have had cancer in it if there was cancer moving throughout my body. She still took seven nodes which accounts for the pain and I suppose she has her reasons. Here's the wonderful thing. We can be sure I am done with breast cancer forever. First of all, because I don't have breasts to get cancer in. But also, because she found no disease in the nodes and the breasts, we are sure that the chemotherapy treatment I got REALLY worked. It killed that stuff 100%. We never would have known this if I went the usual route of cancer treatment which is surgery first and then treatment. By getting surgery first we take out the markers that tell us if the chemo worked. You just have to hope. My mom had her surgery first, a lumpectomy where they found seven diseased nodes, and then chemo and radiation. But without that tumor and her nodes to look at later, how were they to know the cancer was really gone in her body--that chemo and radiation had worked and wasn't just lying dormant and waiting to come out later?
The best news that is possible came out of this surgery. We are still waiting for the actual pathology report, so keep your fingers crossed.
I just need to get these boobs blown up a a bit. I feel kind of imbalanced. And I want to hold my baby. Last night she woke up four times after sleeping two months straight through the night. You have to think she knows what's going on. Even though she is surrounded by her loving aunts, great-aunts, uncle and dad, she still must sense that something is off in the routine of her little life because something is seriously off in the routine of my life.
Today my friend Amber came over with her daughter Ruby. Ruby had open heart surgery when she was three months old due to a VSD. She has little scars where her tubes once were. Soon her and I will be comparing our scars. My aunt Karen is also here doling out her usual funny stories about my family, wisdom and jokes. And of course Hannah. My amazing sister Hannah who wraps Sadie up in a blanket of love, talks and sings to her all while watering my garden, making me breakfast, tea, giving me a shower and cleaning my house. Thank GOD for sisters and mothers and aunts. Happy belated mother's day to everyone.
Love,
Rosalie
Does anyone have any need for some 36 DD bras?
Wednesday, May 7, 2008
Happy Birthday Mom
Hi All,
Today is my mom's birthday. She would have been 61 years old but she was snatched from us by the same disease I am battling today when she was only 53. My mom was a big worrier. And she was worried about me most, at least it felt that way. Probably because I was diagnosed with Lupus when I was 18 years old and ever since, whenever we spoke, it almost always seemed to be about whether I was taking my medication, my vitamins, whether I was exercising and getting enough sleep, eating enough vegetables, remembering to go to my appointments, staying out of the sun and on and on. Just wanting to be a normal young adult, I have to admit, I tended to avoid her phone calls. I regret that now, but how was I to know? Because of my mom's worrying, I am almost relieved she isn't here to see me go through this. I don't like when people worry about me. But also because she would have felt guilty. Guilty that she passed the BRCA1 gene on to me. She died without knowing she carried it. My aunt managed to get a vial of her blood to a lab and we found out later. When my mom was very sick, she sought out a second opinion from Hope, my oncologist. Hope urged her to get the genetic test, but claims my mom wasn't interested. She thinks it was because she didn't want to know whether she had passed it on to one of her daughters. I know how she feels. I am horrified just thinking that Sadie is carrying this same mutation in her little genetic makeup right now.
Up late the other night worrying (I am like my mother in more ways than just cancer), I googled her name and came across some pictures of her taken one month before she died. The pictures were taken as part of a project on cancer survivor practices, like Gi-Gong meditation and acupuncture. At first the pictures were shocking. I forgot how thin my mom was. And to see her out there, on the web like that, I felt she was exposed and vulnerable. I was mad. I emailed the photographer and asked that he prove she knew she would be part of a website in such a way. He wrote right back and assured me she knew and that she very much wanted to be a part of it. She wanted to show herself as a strong survivor of breast cancer. And I remembered that until the very the end, she was fighting. Three days before she died, my sisters took her to the Pine Street Clinic in San Anselmo for an appointment with her Chinese Doctor. Two days before, she was at Kaiser, meeting with her oncologist and getting a new pill form of chemotherapy. She never let us talk to her about whether she was going to die or not. When we cried, she told us to turn our tears in to prayers. Sometimes I am angry about this. Angry we didn't get to ask her all the things we wanted to ask and tell her all the things we wanted to say. I guess I saw it as denial when in fact it was what she needed to do to survive those last days of her life. Hannah was here the other day and we started talking about it. About death and our mom. I told her that I think that people do die, but it's the loved ones left behind that go through death. Death is so much worse than dying. If that makes sense. I have never been afraid of dying because of this. It's only when I think about Sadie or Greg, my family and all my friends that I am scared and sad. For me, I get to go to wherever it is we go--which is life's greatest mystery.
Just now I was out in our backyard watering and I discovered that one of the trees in our backyard is a dogwood tree. I had no idea this tree was a dogwood tree because it hasn't bloomed in the three years we have lived here. It chose today to expose its nature. I love dogwood trees. I don't know why--there's something about the blossoms with their little red tips. The flowers were part of our wedding invitation design my friend Amber did (you can see them here). I almost bought one at the nursery a week ago because I have always wanted one. It blooming today, on my mom's birthday, feels like this was a gift from my mom (yes, I am getting a little mushy here) and it got me thinking about perceptions and the way we look at things. One minute this tree was just some tree in our backyard, one of thousands surrounding our home in the Knolls. And the next, it was infinitely special and now my favorite part of our garden. And my mom, always calling me, worrying, was at the time, nagging to my young mind and now I know it was love.
Anyway, I debated whether to post these photos because again, at the time, I saw them as tragic and so sad. This woman fighting not knowing she was going to die four weeks later. But now, I see it another way. Yes, she was dying, but didn't let that stop her from fighting. From living. From hoping. I am proud of her for fighting until the end and so happy she did it her way. I chose to share the one that shows her beautiful head and her elegant loving hands. I love you mom. Happy birthday.
Love,
Rosalie
Tuesday, May 6, 2008
Sadie Speaks Part Two
I did this a few weeks ago, and just got around to uploading it--mainly because I am severely technologically challenged and was hoping my brother in law Dan could do it for me when he visited. But, both times he has been out here since I have forgotten to ask. I finally had enough! Sadie is practically singing. I'll post one of her arias soon.
By the way, I sound like such a total dork, and this isn't even the worst of it. I babble such randomness to my daughter that Greg is afraid I have started a new language that only Sadie will speak thus causing her to be some sort of outcast anomaly that nobody will understand. Ah, the fears of new parents.
Love,
Rosalie
By the way, I sound like such a total dork, and this isn't even the worst of it. I babble such randomness to my daughter that Greg is afraid I have started a new language that only Sadie will speak thus causing her to be some sort of outcast anomaly that nobody will understand. Ah, the fears of new parents.
Love,
Rosalie
Sunday, May 4, 2008
Ode to My Breasts
It seems fitting I should reflect a little on my breasts as my impending surgery looms ahead and soon they will be gone and replaced by bags of silicone. I have a total love hate relationship with my breasts. They arrived the summer I was going in to eighth grade. They weren't a total shock, as I had seen my older sister Hannah grow a similar pair, just a lot earlier than me. Hers arrived while still in grammar school, sixth grade, and I am sure she could do a similar ode to hers as they affected her life as much as mine have affected my life. Before that summer, I was like most of my friends wearing those silly useless white cotton Calvin Klein bras with elastic bands for support just so we could feel like little adults. But after that summer, I was lurking up in the lingerie department of Nordstroms spending my birthday money my grandparents gave me on an underwire over the shoulder boulder holder Wacoal Wonder which was the kind of bra that had such wide straps, I stopped wearing tank tops. The texture was so crazy, I stopped wearing thin t-shirts because you could see the lumps and pattern underneath. The fabric was like brocade. Like wearing a polyester brocade slipcover on my breasts. My posture changed as I hunched over to hide the albatross that was growing on my chest. As my other friends (all relatively small breasted comparably) pleaded with whatever their young minds believed in at the time for larger breasts and outwardly complained in front of me, I rolled my eyes coveting their ability to wear bikini tops, tank tops and summer dresses with thin straps. I stopped fitting in to my age group of clothing because the tops were too small (and the bottoms always too long because I am short too). Shopping was a nightmare. My poor mom. She wasn't equipped (literally, she didn't have the boobs me and my sisters got at all) to handle the emotional stress of shopping with a teenager when nothing fit.
My dad has always told me and my sisters that boobs make men stupid. I don't quite know what he was trying to instill in our young minds, but I do know this. They made him stupid. As soon as we all started developing, the man disappeared. One moment he was our softball coach and our wrestle buddy, the next he was on a self imposed exile up in his bedroom cataloging stamps and painting army men in some attempt to avoid realizing we were becoming woman, with breasts.
The first time I saw how dumb they can make the opposite sex myself is when my now a freshman in high school sister allowed me to tag along to a basketball game at her school when I was still in eighth grade. Hannah was already blossoming in to the social butterfly she would eventually become and had befriended a ton of older kids. As they milled about in front of the gym, we joined a big group. She rightfully introduced me as her little sister and one of the kids, an older boy, looked at me and said I didn't look like her. And at the time I didn't. She had blonde hair, she has green eyes and smaller features in general. And then, I guess I turned towards him and, with the confidence only a cocky teenage boy can have, looked right at my chest and said, 'Oh, yeah. You're her sister'. In that one moment I was horrified and oddly proud. My breasts had identified me.
So then, I guess after awhile, my breasts made me stupid. Really stupid. I attracted the attention of older men (not my husband--but that sleazy older man/boy group of men who prey on younger high school age girls). At fourteen, my breasts made me look nineteen and so I went along with it. I'm not blaming them, but sometimes I wonder. If I wasn't so outwardly sexual looking without doing anything to be sexual than just be, would I have gotten in to the situations I invariably found myself in? I'll never know. Boy did I get stupid. During my senior year I got fed up and stopped trying to hide them. I started wearing tight wrap tops and walking around with flowers in my cleavage. I got voted Biggest Flirt and Most Likely to End Up Living on a Nude Island by my classmates. I allowed my cleavage to be photographed as a prank, the photo snuck in during our graduation ceremony slideshow. My breasts had taken away my power and now I was finding it back, but in all the wrong ways.
I wasn't respecting my breasts. I wish I had.
So speaking of my husband. Here's the irony. He's not even a 'breast man' in the stereotypical sense. When were were first together, I had thought all I had to do was open up my shirt and he would see these breasts of mine and that would be it. Right? Boobs make men stupid and he would look past our age difference to be with me because I had these breasts. I was wrong. He pushed me away because I was nineteen years younger than him. He said we could just be friends. Later, after I had worn him down (with my wonderful personality and warm heart of course), he admitted that when he first saw them--he didn't know what to do. They overwhelmed him. I don't blame him. They overwhelmed me.
The sad thing is that I never got to use them for what they are here for. I never got to breast feed Sadie. I was on chemo when she was born and the risk of transferring chemicals was there, and so she has been formula fed. I watch Nina sometimes breast feed Sadie and I am so happy that she gets the opportunity and sad that it isn't with me.
As surgery gets closer and closer I am wondering why I am getting the reconstruction, especially after the not always wonderful history I have with these lumps of flesh on my chest. It feels superficial to care. I know Greg would love me whether I had breasts or not (now if I lost my butt, that would be another matter). I could wear something in my bra to make it appear like I have breasts. Maybe, like losing my hair, it will be freeing to just let it go. And then I think about Sadie. And she's turning thirteen and her breasts are starting to grow. I don't want her looking at a canvas of scars when she looks at her mom's chest. As much as my mom complained like all woman do about the way she looked, I know she was beautiful and I know that she felt beautiful too. I love that. I love that she felt beautiful. So, even though they drove me crazy and made me do stupid things and at times I wished I could have had them cut off, I need these breasts to make me feel beautiful and that's nothing to be ashamed of.
Love,
Rosalie
PS: Photo taken by Hannah and approved by Greg.
Thursday, May 1, 2008
I Get to Keep my Boobs for Three Extra Days
Which means my surgery has been delayed. The administrative assistant who delivered the news gave the excuse that there was a 'big case' and they overbooked the surgical rooms, or some such nonsense. She called me the morning of my pre-op appointments as I was rushing out the door to get to the city on time (to wait in the waiting room for an hour) and it really rubbed me the wrong way. I was all set. The day was Tuesday. Greg had work off that day and the two following days. Friends and family had signed up to help me out the following weeks afterwards because I will be left without the use of my arms for two weeks. And now, it's all changed to Friday of that week and Greg has to work on the weekends and all in all it just sucks to have things switched around when you get a mindset going on what's going down and when. I still went to my pre-op appointments. I met with the anesthesiologist nurse and the surgical nurse who went over the minutest of details concerning the surgery and the recovery. The surgical nurse came to our appointment with props. I got to see the implants, both saline and silicone, and I got to feel them. I saw the expanders and the bulbs that will attach to tubes from my wounds to catch the blood and serum (which I have to pour out twice a day and measure and record on a chart she gave me). She had a disc of photos showing real pictures of woman who had the procedure. They weren't horrible. There will be a scar. A sort of frown under my nipple (which thankfully I get to keep). She was kind of an ex-hippie type. She wore birkenstocks with socks. She gave me two little funny shaped pillows just the right size for tucking under arms to ease soreness. I had to choose between the Laura Ashley rosebud print or the Cost Plus looking African print. I just wanted to say thanks but no thanks, but didn't want seem ungrateful. She wanted to know if I knew any visualization techniques or practiced any kind of meditation. This produced a blank stare. But then she talked to me about doing what she called 'Art for Recovery' with my breasts. Getting them casted, making a paper maiche mold, photos, that kind of thing. Now that my surgery has been delayed--I just might. We don't go through life thinking we are going to lose a part of the body we are born with. Whether it's our arms, our legs, or our breasts. I am whole now, and no matter how beautiful my new boobies look, they aren't me. Me was cut out and sent to some pathology lab and then tossed in to a red infectious waste container. I'll wake up, flat chested, for the first time in 22 years, with hard plastic round discs under my muscle that will get filled up over the next few weeks with saline until they are the 'right' size (photos above are of this procedure). And what's the right size? I'm supposed to 'eyeball' it. The surgery nurse said I'll just know when it's right. I can't even make a decision about what color to paint my living room walls. How am I supposed to decide on the size of my breasts? Should I get them the ample size they are now, or cheat mother nature and go a bit smaller? But would if mother nature also decides to pack on some pounds to my frame (I know, that's actually my decision) and everything starts to grow, except my breasts. I'll have this big old butt and a flat chest. Ugh. Now I am spinning. Which means I need to go to bed and get some sleep because tomorrow is one of 7 more days with my breasts and I intend to enjoy it.
Love,
Rosalie
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