Just before Christmas (in fact I think 2 days) I was run in for another MRI. They gave me an IV that shot fluid into my uterus to make its anatomy clearer. You see, I had made the terrible bad decision to run up the stairs one evening. Yes,... that was all, I just ran up the stairs. It triggered muscle cramping so bad I was on the maximum level of Perocet to even take the edge off. I spent the night with a cod liver oil compress on my abdomen, cramping in front of my fireplace. I felt like I was in labor. With the 10lber... It was insane. I screamed at the universe. I demanded my life back. My hair, which was falling out just as it had when I lactating, I demanded back. I demanded my daughter be delivered from watching this horrifying pain, a pain that she would identify with like no one else.
Now, let me explain that Christmas Eve is a big deal for Italians. FOOD FOOD and more FOOD and as my family was all chosen where I was living, my house had become the traditional Christmas Eve stop. I refused to let this get in my way. Doc called the morning of Christmas Eve. It wasn't growing, was shrinking, no blood flow. Hang in there and if I could make it through the holidays we would trouble shoot. I was relieved that at least we had some idea what was going on. But I went on a liquid diet, and returned to it whenever the bleeding got bad. It helped. Pressure from my bowel seemed to be a trigger. So I fasted through Christmas Eve and evry bleeding day after that.
I made it through the holidays. But somewhere along there in the bleak midwinter my body decided that it had lost its patience.
I was sitting on the sofa talking to hiking/clot-naming friend who had moved to Alaska just after my embo. I was feeling a little light headed, but was happily chatting. Kids were getting in from school and we were hollering back and forth about what Alaska was like. Suddenly, the worm turned. I had no idea what was happening, but I new it was inevitable and profound. I told her, and she was mid sentence (that's how suddenly it came on) I had to go I was feeling funky. Just hung up. She was petrified she told me later because by the time I called her back it was over.
I put my head between my legs and told my son that if I passed out to call 911.
He one-upped me. Before I had time to pass out, he was troubleshooting. He called his Dad, who was out of town and told him what was going on. He gave him the number of my OB/GYN and asked his father to call them. He then took his little sister by the hand and took her to a friends down the street. He wanted her to be with people she would be able to be either scared or happy with. He then went further down the street to a friend of mine, to ask her to go to the house and help me. Only her adult son was home, but he came down to help. My kid then went to another house and got another adult to assist. He managed this all in minutes. Then he got on the phone with his dad, as the adults checked on me. My heroic 13 year old.
I began to feel less crazy in the head. And that is how it was -- though my head was between my knees I was still in a spin. I couldn't stop it, like a drunk frat boy. It lifted a bit and I made my way into the bathroom.
I can not describe exactly what it was, but it was as if I could feel it peeling itself away from the inside of my uterus. A huge, gelatinous clot. It looked, seriousy, like I had delivered my own liver. And the one long steady cramp that had started while my head hung between my knees, vanished.
I spent the weekend on a maintenance level of Percocet. I managed to get to the premiere of an independent film I had worked on Saturday night -- wearing a depends and a very long sweater. I was hanging in there. Until Sunday....
Monday, November 9, 2009
Sunday, November 8, 2009
The Day of Miracles
What happened that Sunday is best described in an email I sent out to friends a week later-
What has occurred, I feel I should get you caught up on, so you can get the organic perspective as well as the psycho-emotional. I wrote you about thinking that something might be happening, I was having to manage my pain with Percocet – the pain was radiating from under my rib cage to my left knee. As you know last summer I came home early to have a procedure done to slow down the growth of the fibroid. It was successful in curbing the symptoms the fibroid was causing. But by September I was having periodic pain. The guy doc who did the procedure (a guy I really respect) referred me to a GI specialist, thinking that perhaps there was some GI thingy complicating my recovery, because my symptoms weren’t like anything he’d encountered. GI guy thought I was having spasmodic muscle problems with me pelvic floor that just so happened to coincide with inflamatory symptoms. Then we got a MRI the day before Xmas eve after an excruciating week. It showed lots of inflammation. It also shows that the tumor is dying. So we’re thinking maybe some over reaction of my body kind of auto-immunity question. And maybe some underlying inflammatory condition that would have indications. But I was also extraordinarily fertile. Three fertile eggs released at once showed up in the MRI. Another consultation with a my OB/GYN, who brings down my estrogen. Then the week before last, the bleeding returned, and that friday night I passed what looked to me like it could have been named. Almost got to the ER that day thinking a transfusion was the fix, but it wasn’t necessary.
Then we come to a week ago today. Morning broke, I watched Tori Amos on “Breakfast with the Arts”. I’m in the middle of writing a musical with her music, dedicated to Nicola, so I was in no big hurry to deal with the crick in my side. She’s done, I take a pain killer. Half hour, another. Not the slightest help. And I’m scared. Maxed the narcotics dose and I’m now on the ground not able to breath. Nowhere to go from here.
So I jump off the cliff I’ve been swimming upstream to avoid. I know I’m anemic. I know if I show up at the ER with my history they’re going to do as they think they must, the best they can. I’m over the waterfall. They’re going to take my uterus, and whatever else gets in the way.
I’m lying in the ER weeping. I’ve got my hands on my lower abdomen. I’m just saying thank you thank you thank you – saying goodbye, having a moment of gratitude, for all dreams it held, all the promise, of the service it gave me.
And then a face I know. It’s my OB/GYN!! SHE’S THERE! She’s got another case at the hospital, and she’s been paged by the ER. Miracle number 1.
Pelvic ultrasound. Lots of inflammation, the tumor isn’t as large, but it’s taking up lots of space. Maybe a D&C we’re talking.
And then the exam. My cervix is dilated four cm. and she finds all this necrotic material. It’s so painful. I keep saying it’s the tumor, but she can’t seem to remove it. She’s worried that it’s a miscarriage. HA! The pain I’ve been in, the hormones I’ve been on, there’s no possibility. But I am sexually active. It could be months. And I’m shattered. She runs out (it seems to me). Speculum out. Everybody leaves. I’m shattered. The idea. Of losing someone. The potential of someone. What’s been the point of preserving myself if all I’m going to end up doing is creating angels who will wait for me in heaven.
She comes back in. It’s negative. It’s negative. You haven’t lost anyone. Nobodie’s been sacrificed. Tears of gratitude. Thank you thank you thank you. Miracle number 2.
SO what’s next. Well a D&C is not going to cut it. She’s called the surgeon on call at the specialists who operated last summer. We’re going in. And there’s no guarantees. She’ll go in with the hope of removing the dead tissue only, but that could translate in blood loss and dead tissue, to losing my uterus. She knows it’s not what I want. She’s going to try to call in the dr. she trained with for consultation. She doesn’t work in this hospital or even in this part of the city, it’s Sunday, but she’ll try.
They wheel me into the OR. And I talk to the anesthesiologist. I talk for a few minutes with my Dr. and I meet the Dr. she trained with. The talk about where they’re going in, how they will proceed. And they talk to me. A lot. And to each other. And I’m struck by the obvious mutual respect between these women. One trained the other, and in return the other delivered her children. They’re touching me, and holding each other’s hands. They are smiling. I’m among angels here, to each other, and to me. Miracle number 3.
All I remember is the sensation of being moved in the black. Hands under my body. I hear my own voice, crying, moaning, ouchouchouchouch. And I hear my doctor’s voice. No tension, light, enthusiastic. “I’ve got to show her this before you take her”. She asks me to try. I open my eyes and all I see is her thumb holding a polaroid. Against a hospital green background lies what looks like a full loaf of sourdough bread, soaked in blood. I smile, “did you have to take it all”. “No sweetie, we got just it out, you’re whole”.
“I’m so happy”. Thankyouthankyouthankyouthankyothankyouthankyou. Dumb numb, gratitude. Miracle number 4. The big miracle.
What follows are the lesser miracles that continue to amaze me.
I can still have kids. I’ll probably be on bed rest and I’ll definitely have to schedule a c-section at 37 weeks, but if it’s the right thing, I can do it. It’ll make the decision all the more serious, but maybe that’s all for the good.
In most of these surgeries there is the risk of noticeable scarring. I’m wearing string bikini undies and you can’t even see the inch and a half of steri-tape that vertically covers the scar. They removed a degenerating fibroid that tips out under my ribs, making my uterus the size of a 17week pregnancy, and they did it without an external vertical cut. The horizontal cut is beneath the line of pubic hair.
In most of these surgeries they cut through abdominal muscle. She massaged and stretched and moved mine to the sides. When they were done, they put a small dissolving stitch to pull them back together.
I got exactly 7 vases of flowers. One from a group of friends that said, “if you’re walking around and sitting up and going to the bathroom by yourself… then you’re not on enough pain killer”. Or "hiking friends" that said “I think I should make it clear that you are not allowed to be sick when I am not around to take care of you”. A cheesecake from a neighbor. Or the 7 emails from my internet friends who didn’t know, but didn’t care, and sent out their messages in bottles of hope and care and concern.
Much as earlier in the year, I was trying to keep up with whether or not the nurses are getting my antibiotics to me as scheduled. In the hospital longer than before I meet a lot of nurses. This time however I can't really advocate for myself because I am just too out of it. Imagine that -- open abdomenal surgery and I can't advocate for myself -- duh. One of the doctors on rounds CAN NOT make any kind of eye contact -- NONE. He is amazing in the extreme -- why oh why would he think he should be working in OB/GYN?? Pathology would be my choice for him. He sincerely stared at the ground and I remember NOTHING that he said. Pointless. A nurse comes by, I ask her to leave my door open a while so I can hear the babies, and as I am on the maternity ward, she askes me "what I had". "a tumor", I replied, the comedy of it not escaping of me. But that was insensitive, because she begins to tear with sympathy. I reassure her that I'm lucky, I'm okay. WHAT a sweet compassionate soul.
And it’s a week later. I’m walking straight up. My brother has made me laugh and I didn’t rupture. He’s hung out with me and played healing songs on his guitar and lulled me to sleep. Thank God for Billy Bragg and G’s guitar. I’m going to be okay. I am whole and healing and able. What a miracle.
ThankyouThankyouThankyouThankyouThankyouThankyouThankyouThankyou.
What has occurred, I feel I should get you caught up on, so you can get the organic perspective as well as the psycho-emotional. I wrote you about thinking that something might be happening, I was having to manage my pain with Percocet – the pain was radiating from under my rib cage to my left knee. As you know last summer I came home early to have a procedure done to slow down the growth of the fibroid. It was successful in curbing the symptoms the fibroid was causing. But by September I was having periodic pain. The guy doc who did the procedure (a guy I really respect) referred me to a GI specialist, thinking that perhaps there was some GI thingy complicating my recovery, because my symptoms weren’t like anything he’d encountered. GI guy thought I was having spasmodic muscle problems with me pelvic floor that just so happened to coincide with inflamatory symptoms. Then we got a MRI the day before Xmas eve after an excruciating week. It showed lots of inflammation. It also shows that the tumor is dying. So we’re thinking maybe some over reaction of my body kind of auto-immunity question. And maybe some underlying inflammatory condition that would have indications. But I was also extraordinarily fertile. Three fertile eggs released at once showed up in the MRI. Another consultation with a my OB/GYN, who brings down my estrogen. Then the week before last, the bleeding returned, and that friday night I passed what looked to me like it could have been named. Almost got to the ER that day thinking a transfusion was the fix, but it wasn’t necessary.
Then we come to a week ago today. Morning broke, I watched Tori Amos on “Breakfast with the Arts”. I’m in the middle of writing a musical with her music, dedicated to Nicola, so I was in no big hurry to deal with the crick in my side. She’s done, I take a pain killer. Half hour, another. Not the slightest help. And I’m scared. Maxed the narcotics dose and I’m now on the ground not able to breath. Nowhere to go from here.
So I jump off the cliff I’ve been swimming upstream to avoid. I know I’m anemic. I know if I show up at the ER with my history they’re going to do as they think they must, the best they can. I’m over the waterfall. They’re going to take my uterus, and whatever else gets in the way.
I’m lying in the ER weeping. I’ve got my hands on my lower abdomen. I’m just saying thank you thank you thank you – saying goodbye, having a moment of gratitude, for all dreams it held, all the promise, of the service it gave me.
And then a face I know. It’s my OB/GYN!! SHE’S THERE! She’s got another case at the hospital, and she’s been paged by the ER. Miracle number 1.
Pelvic ultrasound. Lots of inflammation, the tumor isn’t as large, but it’s taking up lots of space. Maybe a D&C we’re talking.
And then the exam. My cervix is dilated four cm. and she finds all this necrotic material. It’s so painful. I keep saying it’s the tumor, but she can’t seem to remove it. She’s worried that it’s a miscarriage. HA! The pain I’ve been in, the hormones I’ve been on, there’s no possibility. But I am sexually active. It could be months. And I’m shattered. She runs out (it seems to me). Speculum out. Everybody leaves. I’m shattered. The idea. Of losing someone. The potential of someone. What’s been the point of preserving myself if all I’m going to end up doing is creating angels who will wait for me in heaven.
She comes back in. It’s negative. It’s negative. You haven’t lost anyone. Nobodie’s been sacrificed. Tears of gratitude. Thank you thank you thank you. Miracle number 2.
SO what’s next. Well a D&C is not going to cut it. She’s called the surgeon on call at the specialists who operated last summer. We’re going in. And there’s no guarantees. She’ll go in with the hope of removing the dead tissue only, but that could translate in blood loss and dead tissue, to losing my uterus. She knows it’s not what I want. She’s going to try to call in the dr. she trained with for consultation. She doesn’t work in this hospital or even in this part of the city, it’s Sunday, but she’ll try.
They wheel me into the OR. And I talk to the anesthesiologist. I talk for a few minutes with my Dr. and I meet the Dr. she trained with. The talk about where they’re going in, how they will proceed. And they talk to me. A lot. And to each other. And I’m struck by the obvious mutual respect between these women. One trained the other, and in return the other delivered her children. They’re touching me, and holding each other’s hands. They are smiling. I’m among angels here, to each other, and to me. Miracle number 3.
All I remember is the sensation of being moved in the black. Hands under my body. I hear my own voice, crying, moaning, ouchouchouchouch. And I hear my doctor’s voice. No tension, light, enthusiastic. “I’ve got to show her this before you take her”. She asks me to try. I open my eyes and all I see is her thumb holding a polaroid. Against a hospital green background lies what looks like a full loaf of sourdough bread, soaked in blood. I smile, “did you have to take it all”. “No sweetie, we got just it out, you’re whole”.
“I’m so happy”. Thankyouthankyouthankyouthankyothankyouthankyou. Dumb numb, gratitude. Miracle number 4. The big miracle.
What follows are the lesser miracles that continue to amaze me.
I can still have kids. I’ll probably be on bed rest and I’ll definitely have to schedule a c-section at 37 weeks, but if it’s the right thing, I can do it. It’ll make the decision all the more serious, but maybe that’s all for the good.
In most of these surgeries there is the risk of noticeable scarring. I’m wearing string bikini undies and you can’t even see the inch and a half of steri-tape that vertically covers the scar. They removed a degenerating fibroid that tips out under my ribs, making my uterus the size of a 17week pregnancy, and they did it without an external vertical cut. The horizontal cut is beneath the line of pubic hair.
In most of these surgeries they cut through abdominal muscle. She massaged and stretched and moved mine to the sides. When they were done, they put a small dissolving stitch to pull them back together.
I got exactly 7 vases of flowers. One from a group of friends that said, “if you’re walking around and sitting up and going to the bathroom by yourself… then you’re not on enough pain killer”. Or "hiking friends" that said “I think I should make it clear that you are not allowed to be sick when I am not around to take care of you”. A cheesecake from a neighbor. Or the 7 emails from my internet friends who didn’t know, but didn’t care, and sent out their messages in bottles of hope and care and concern.
Much as earlier in the year, I was trying to keep up with whether or not the nurses are getting my antibiotics to me as scheduled. In the hospital longer than before I meet a lot of nurses. This time however I can't really advocate for myself because I am just too out of it. Imagine that -- open abdomenal surgery and I can't advocate for myself -- duh. One of the doctors on rounds CAN NOT make any kind of eye contact -- NONE. He is amazing in the extreme -- why oh why would he think he should be working in OB/GYN?? Pathology would be my choice for him. He sincerely stared at the ground and I remember NOTHING that he said. Pointless. A nurse comes by, I ask her to leave my door open a while so I can hear the babies, and as I am on the maternity ward, she askes me "what I had". "a tumor", I replied, the comedy of it not escaping of me. But that was insensitive, because she begins to tear with sympathy. I reassure her that I'm lucky, I'm okay. WHAT a sweet compassionate soul.
And it’s a week later. I’m walking straight up. My brother has made me laugh and I didn’t rupture. He’s hung out with me and played healing songs on his guitar and lulled me to sleep. Thank God for Billy Bragg and G’s guitar. I’m going to be okay. I am whole and healing and able. What a miracle.
ThankyouThankyouThankyouThankyouThankyouThankyouThankyouThankyou.
Saturday, November 7, 2009
me and my walnut
My uterus and I are doing fine now.
Though life conspired to bring care-giving full circle and I have spent much time since caring for adults rather than new children of my own, seeing the passing of someone you love is in many ways also like a birth -- like me, she was delivered from pain into a new purified life. Just not with me.
My uterus is about the size of a walnut. No symptoms have returned, and I maintain a low estrogen level with daily birth control. I now bleed only about two days or three days a month. My DOC, aka the holy spirit herself, tells me there is no woman alive who deserves a light period more than I do!
Every time I go in to see my guardian angel, my Doc, she smiles and says "I think about you every day... NO! I think about your UTERUS, everyday".
In the end, the reason for all my pain and complication was a misdiagnosis by the clinic where I was originally seen. It was no submucosal fibroid, subserous, or was it intramural (inside the muscular wall) it was in fact pendunculated myoma. A fibroid connected by a "stalk" -- the type that a embolism will kill, but the body can not accommodate for. It is not really anyone's fault -- DOC#3 herself could not believe how short and how broad the "stalk" itself was -- disguising it as submucosal. The embolism killed it and my body spent three months trying to "delivery" the myoma as if it weren't attached to my uterus -- I was basically in labor for a couple months -- explaining the dialation and the labor like pains that pain killers couldn't touch. The "liver" that dropped out of me was necrotic material -- dead stuff... quite the crazy natural wonder, a woman's body. But this journey was more than that, wasn't it?
These battles we fight, they do help us grow. They in fact demand that we grow. Though professionally I may have lost some traction because of this journey, though my daughter may continue to have fear issues as she matures into womanhood I will help her through, this journey did take me somewhere. A place where I have learned to follow my intuition unapologetically, even when it's mistaken. A place where my sexuality is an innate gift, that I am to enjoy and celebrate and fight for. A place where I know there are heroes, living (at least for a little longer, in a few cases) right here with me. I am thankful everyday for the preservation of my body, for the loving care it finally received, and for the people that came into my life,... just in the nick of time.
Though life conspired to bring care-giving full circle and I have spent much time since caring for adults rather than new children of my own, seeing the passing of someone you love is in many ways also like a birth -- like me, she was delivered from pain into a new purified life. Just not with me.
My uterus is about the size of a walnut. No symptoms have returned, and I maintain a low estrogen level with daily birth control. I now bleed only about two days or three days a month. My DOC, aka the holy spirit herself, tells me there is no woman alive who deserves a light period more than I do!
Every time I go in to see my guardian angel, my Doc, she smiles and says "I think about you every day... NO! I think about your UTERUS, everyday".
In the end, the reason for all my pain and complication was a misdiagnosis by the clinic where I was originally seen. It was no submucosal fibroid, subserous, or was it intramural (inside the muscular wall) it was in fact pendunculated myoma. A fibroid connected by a "stalk" -- the type that a embolism will kill, but the body can not accommodate for. It is not really anyone's fault -- DOC#3 herself could not believe how short and how broad the "stalk" itself was -- disguising it as submucosal. The embolism killed it and my body spent three months trying to "delivery" the myoma as if it weren't attached to my uterus -- I was basically in labor for a couple months -- explaining the dialation and the labor like pains that pain killers couldn't touch. The "liver" that dropped out of me was necrotic material -- dead stuff... quite the crazy natural wonder, a woman's body. But this journey was more than that, wasn't it?
These battles we fight, they do help us grow. They in fact demand that we grow. Though professionally I may have lost some traction because of this journey, though my daughter may continue to have fear issues as she matures into womanhood I will help her through, this journey did take me somewhere. A place where I have learned to follow my intuition unapologetically, even when it's mistaken. A place where my sexuality is an innate gift, that I am to enjoy and celebrate and fight for. A place where I know there are heroes, living (at least for a little longer, in a few cases) right here with me. I am thankful everyday for the preservation of my body, for the loving care it finally received, and for the people that came into my life,... just in the nick of time.
gratitude
Out of pain I hear my cries dissolve to songs of gratitude.
And I am rekindled with faith
And joy
And the laughter of the children dear to me
Whose faces I picture
Toothless and smiling
Loving me
Loving them
Those heroic boys and girls
Who bring me back to living
Such thanks
@copyright 2005
And I am rekindled with faith
And joy
And the laughter of the children dear to me
Whose faces I picture
Toothless and smiling
Loving me
Loving them
Those heroic boys and girls
Who bring me back to living
Such thanks
@copyright 2005
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