Boris and I carry Baron upstairs and welcome him to his new home. Miles is in his highchair eating lunch. I'm so happy to see him. I sit down next to Miles with Baron in my arms and say, "Miles, this is Baron. He's your baby brother." A giant smile spread across Miles' face and he starts waving and blowing kisses to Baron. He repeatedly says, "Hi. Hi Boon (Baron's new nickname for life)." And he asks to hug and kiss Boon and says "baby brother." Amazing. After 5 minutes or so, he does say "bye bye Boon," and I have to tell Miles that Baron is here to stay. I tell him that we're all here to stay. No more running back and forth to the hospital. No more leaving the house and not returning for 7 hours. I get to enjoy the rest of the week at home with all 3 of my boys.
The next few days are familial bliss. Baron is an angel. An absolute angel. He rarely cries, sleeps for 3 or 4 hours at a time (we actually got a few 5 hour stretches out of him) and Miles likes him. At least for now. It's such a stark contrast to the first few months Miles' life. Miles was a madman and for several months would cry for 3-4 hours at a time. He was either asleep, eating, or awake and screaming his brains out. Boris and I lived in fear of the evening as that was when he cried the most and was the least consolable. There was a time when I was terrified of leaving the house with him lest he burst into one of his screaming fits. You couldn't have paid me to go anywhere with him alone. Maybe it's that we're second time parents now and less afraid, or maybe Baron really is an angel baby. But our house is actually calm. I'm not nervous or stressed. All 4 of us go the park and on walks. Baron can be sleeping peacefully and we can pick him up, put him in a car seat or sling and he stays asleep (what!?) or looks up at me and blinks and then goes back to sleep (what!? what!?). He's eating like a champ and gaining weight. It's heaven.
But hell is around the corner and it's preventing me from truly enjoying myself. Knowing that each amazing day with my family brings me one day closer to chemo is torturous. And now that I see how peaceful and happy I am with all of my boys at home (instead of the chaos I was expecting), I'm pissed. It just seems so unfair that I lost an entire week to the NICU. Of course I am thankful that Baron is fine. And I'm thankful that he's home without an infection. But I feel robbed of precious time that I can never get back. And I'm afraid of what lies ahead and wonder if I'll ever get to experience days like I've been having again.
Saturday, February 28, 2009
Monday, February 23, 2009
NICU
I think the NICU is the worst place I've ever seen. Small plastic cribs neatly lined up in rows encase tiny babies hooked up to tubes and monitors. I cry as I'm wheeled up to the plastic crib encasing my tiny baby. As I peer into some of the other plastic cribs, my baby doesn't look quite so tiny. But the sight of my child with a tube down his throat and a nasal cannula taped down to his face is really too much for me to bear. He however doesn't seem nearly as upset as me. He looks almost content. I speak with Susie, Baron's nurse. She explains the blinking monitor hanging above Baron's bed. "The first line is his heart rate, the second is the oxygen level in his blood and the third is his breathing rate. He's doing great and breathing much easier. We've taken some blood to see if there's any sign of infection." I notice the tiny prick mark on Baron's foot and start crying again. I ask Susie if I can hold him. She tells me that she'll have the equipment around his crib rearranged so that I can pick him up without disconnecting any of the wires. "For now, we can open the top of his crib and you can touch him," she says. The top of the crib is slowly removed and I stroke Baron's little body and place my face close to his and tell him how much I love him and that I'm here with him. He has tiny chicken legs and feet. I know a 6 pound baby isn't all that small, but compared to Miles who was over 9 pounds, Baron seems so scrawny. All around me I can hear the sniffles and murmurs of new mothers aching to hold their babies. "Mommy is here, mommy loves you, hi sweetheart it's mommy," they whisper over the beeps and buzzes of the monitors while sticking their hands through cut out windows in the cribs. It's tragic.
I tell Boris I must have been a serial killer in my past life to deserve this. First cancer (which is enough in and of itself) but cancer while pregnant, then a baby in the NICU. Anything else? I ask him if I can jump out of the window of our room or if he could please, please shoot me. He can't. But seriously, I can't take it. I just can't. I want to die.
I'm only allowed to stay with Baron for an hour before I'm told the nurses are changing shifts and I have to leave until the night nurses arrive. "You can stay all day and all night except for 1.5 hours in the morning and early evening," Susie tells me. I weep as I'm wheeled back to my room. I tell the nurse that I'm keeping the wheelchair so that I can see Baron promptly at 8pm when I'm allowed back in the NICU. And at 8pm sharp Boris and I scrub our hands and push open the doors to the NICU and park ourselves outside of Baron's crib. I ask the night nurse if she can take the top of the crib off so that I can hold Baron. "He's connected to a lot of wires," she says. I want to respond, "no shit. I'm not blind," but I don't. I just stare at her. "Are you going to want to hold him every time you come here?" she asks. "Yes," I state. "I'm going to want to hold him every time I come to see him." And I do. I am so happy to hold him! He looks so uncomfortable with tape on his face and he repeatedly tries (and often succeeds) at pulling the nasal cannula out of his nose. I swear he gives me a look like "mom, what the hell?" "I don't know chicken," I whisper. "They're trying to get you well so you can get out of here. I'm going to stay with you until I pass out and then will come back the second I wake up in the morning."
Boris and I stay in the NICU until after midnight. I cry myself to sleep that night. I just can't believe this is happening. My 2 weeks of bliss. I only get a few hours of sleep before the nurse's assistant comes in to take my vitals. I can't understand why it's more important to take my temperature and blood pressure instead of letting me sleep. And why every few hours? I'm fine. Jesus. Plus, she kind of freaks me out and I make Boris stay in the room with me every time she enters. She is always chomping on her gum so loudly it's hard to hear anything else. But the next morning through her chomps she tells me that she hopes my son looks like me because I'm so pretty. Um...creepy? She tells me that several times. Then I think she asks me if I'm Christian, but that can't be right so I say "excuse me?" "Do you go to church?" she asks. For the love of God. I was right. "No I do not go to church," I curtly respond. Now that she thinks I'm a heathen she has nothing to say to me.
I enter the NICU at 5am sans wheelchair. The nurses seem impressed that I've hobbled over so soon after a c-section. And without narcotics. They keep asking me if I'm in pain. I probably am but everything is relative. After chemo, massive surgery isn't really so bad. Nothing is. I chuckle to myself as I tell them that I'm just uncomfortable. For as long as I can remember, whenever I would ask my mom if something hurt, she would respond "no, it's just uncomfortable." I never understood why she never seemed to think anything hurt until now. Baron's nurse tells us that he did great during the night. "He's breathing well, staying warm and his CBC was good." I'm overjoyed. I have to speak to the neonatologist, but think that surely he'll be out of the NICU in no time.
So I'm surprised when Dr. Trintou tells us that Baron's CBC was not good. "His band count was very high. Although the blood culture came back clear, he's going to need a full course of antibiotics," she informs us. Fuck. I ask how long the course is. "7 days," Dr. Trintou says. 7 days!? Please shoot me now. I start sobbing. I can barely speak through the sobs but manage to blurt out that they cannot keep him for 7 days because I start chemo in 14. Susie hugs me and wipes my tears with a tissue. One of the other nurses walks over and suggests that I be moved to the room closest to the NICU and that we try to get Baron off fluids and the nasal cannula as soon as possible so that he can room with me while I'm at the hospital.
Cancer is so prevalent that there's not a single person's life it hasn't touched. Each nurse or doctor I met at the hospital had a story to share with me about their experience with cancer. Everyone wanted to know about my experience and how I was doing. And they wanted to help me however they could even if that meant bending the rules a bit for me. And interestingly, they all wanted to discuss my hair. I think I've moved out of the military phase and now look like a Chia pet.
I will not go in to detail of all the exceptions that the unbelievable nurses and doctors in the NICU made for me as they undoubtedly violate all of the hospital's rules. I will say that I am beyond grateful to them and that I spent 3 blissful days and 2 blissful nights with Baron before I was kicked out of the hospital. Baron slept on me for 72 hours straight and I nursed around the clock (another sad irony to my situation is that Baron, like Miles, latched on immediately and breastfeeding was really easy for us). I did have to give him bottles each time he ate because we were under strict instruction to feed him a certain amount of milk. It was actually incredibly stressful and I often felt as if we were being forced to force feed Baron. To keep him off fluids, he had to eat at least 30 cc's of milk. For a 6 pound, 2 day old, this seemed like an outrageous amount of food to me, but I wanted him with me. I hated trying to get him to take more from the bottle when he obviously didn't want it. I tried to get Boris to throw any left over milk away so the nurses wouldn't know when he didn't finish the requisite amount, but he refused. Boris didn't want to cross the very same people who were going out of their way to help and accommodate us. And of course...he wanted Baron to be okay. Baron often preferred to use my boob as a pillow, but I was so happy to have the snuggle time with him that I would have given up the breastfeeding all together.
I wish there was some way to blend motherhood and science and that I didn't have choose. It's one of the tragedies of the NICU. The doctors and nurses save so many little lives with science and medicine. For the truly tiny (and early), everything is monitored and controlled. There are specific "touch times" when mothers can hold or touch their babies, but the rest of the time the babies have to be in the climate controlled cribs. I heard a devastating conversation between a new mother and the nurse caring for her 4 pound twin boys born at 34 weeks in which the mother was begging the nurse to hold her babies "skin-to-skin" as she had read so much about how touch not only promotes bonding, but growth. The nurse was explaining why the babies had to be in their cribs except during "touch time." And even mothers of larger babies who could feasibly breastfeed often aren't able to successfully do so because they can't sleep in the NICU and miss too many feedings. Their milk supply dwindles and the babies won't latch on to the breast. I realize that having their babies come home as soon as possible is the most important thing, but it's all just so sad.
Another tragedy of the NICU, in my environmentally friendly and non-toxic opinion is that the NICU is well...highly toxic. For some reason I wasn't as bothered by the frequent use of xray machines as I was by watching toxic cleaning products sprayed all over the place. I realize that cleanliness is godliness at a hospital and that ensuring as sterile an environment as possible is crucial for premature babies but there are alternatives to cleaning products with harmful and harsh chemicals. One evening when Baron was rooming with us, his nurse came to take him to the NICU for a blood test. When he returned, I commented to Boris that he smelled like perfume. Boris thought the nurse must have had a lot of perfume on and it rubbed off on Baron. I later found out that they had given Baron a bath and used (gasp!) Johnson and Johnson shampoo. From then on, I instructed each nurse who cared for Baron that he was not to have any baths (I mean he's a newborn, how dirty do they think he's getting?) and they were not to use any soap, shampoo or other products on him. Since the beginning of his little couldn't have been more toxic (chemo and antibiotics - please, please shoot me), sparing him sulfates, "fragrance," and a paraben was the least I could do.
As happy as I was to have Baron in my arms 24 hours a day, I missed Miles tremendously. Miles has had like 3 colds in his entire life so of course he gets his 4th the day I give birth to Baron. I knew that Miles couldn't meet Baron while getting over a cold, but on day 4 of my hospital stay, I tell Boris that I might die if I don't see Miles. Boris brings Miles to the waiting room of the maternity ward. I had envisioned him running into my arms yelling "mama!" I know he's not the snuggliest boy, but surely he must be beside himself not seeing me for 4 days. Okay, so maybe not beside himself, but a little sad? Not so much. Miles coolly saunters over to me (Boris dressed him in a rock star outfit complete with designer jeans, a Fender t-shirt and L.A.M.B. tennis shoes), waives and says "hi, mama." Then he proceeds to wander around the floor pointing out doors, trucks, trees, windows, babies and people. He now calls all adults "man," so as each adult walked past us, Miles would yell "hi, man!" or "a man!" When he wants something he says "have it," and he spent a long time pointing to the table lamps demanding to "have it." Then one of the NICU nurses walked by and said hello to Miles. He was apparently quite taken with her, asked her to pick him up, then murmured her name the rest of the visit. I got a few hugs from him when I fed him ice cream, but without the ice cream, he could have cared less that I was there. So sad.
The next day was day 5 at the hospital and thanks to my insurance, my time was up. Dr. Ottavi made a few phone calls to the powers at be at the hospital to see if I could stay longer. She said that moms used to be able to stay at the hospital when their babies weren't discharged at the same time. The hospital basically provides a room but no care (no medical services or food). The nurse in charge of the floor comes to tell me that she can't let me stay. She says that if she makes an exception for me, she'll have to make an exception for all of the NICU moms. "I'm not going to tell any of them," I say. "So unless you are, that shouldn't be a problem. And I am an exception because as far as I know, none of the NICU moms have cancer and won't be starting chemo next week." Silence. "Well we're also full," she says. I couldn't really argue with that one, so that was that.
Boris and I spent the next 2 days and nights running back and forth between Miles and Baron. I was at the hospital between 7 and 8 in the morning so I could feed Baron and usually stayed until 4pm, at which point my parents would come to the hospital to hold him (I wanted him held as much as humanly possible) and I'd go home to play with Miles, give him dinner and put him to bed. Then it was back to the hospital until close to midnight if we didn't pass out sooner. It was agony. Having your heart split in two is brutal and guilt racking and a total nightmare. And what made it worse was the floor was not full. Far from it. Each night as Boris and I hobbled down the hallway we passed empty room after empty room.
But 2 hellish days and nights later, Baron gets the okay to come home. I hug the nurses who cared for both of us. Boris brings bagels. There's nothing like food to thank people. "You are so strong," Susie says as she loads up our bag with wipes and diapers. We promise to send updates of Baron and then are free to leave with our son. And the nightmare is over.
I tell Boris I must have been a serial killer in my past life to deserve this. First cancer (which is enough in and of itself) but cancer while pregnant, then a baby in the NICU. Anything else? I ask him if I can jump out of the window of our room or if he could please, please shoot me. He can't. But seriously, I can't take it. I just can't. I want to die.
I'm only allowed to stay with Baron for an hour before I'm told the nurses are changing shifts and I have to leave until the night nurses arrive. "You can stay all day and all night except for 1.5 hours in the morning and early evening," Susie tells me. I weep as I'm wheeled back to my room. I tell the nurse that I'm keeping the wheelchair so that I can see Baron promptly at 8pm when I'm allowed back in the NICU. And at 8pm sharp Boris and I scrub our hands and push open the doors to the NICU and park ourselves outside of Baron's crib. I ask the night nurse if she can take the top of the crib off so that I can hold Baron. "He's connected to a lot of wires," she says. I want to respond, "no shit. I'm not blind," but I don't. I just stare at her. "Are you going to want to hold him every time you come here?" she asks. "Yes," I state. "I'm going to want to hold him every time I come to see him." And I do. I am so happy to hold him! He looks so uncomfortable with tape on his face and he repeatedly tries (and often succeeds) at pulling the nasal cannula out of his nose. I swear he gives me a look like "mom, what the hell?" "I don't know chicken," I whisper. "They're trying to get you well so you can get out of here. I'm going to stay with you until I pass out and then will come back the second I wake up in the morning."
Boris and I stay in the NICU until after midnight. I cry myself to sleep that night. I just can't believe this is happening. My 2 weeks of bliss. I only get a few hours of sleep before the nurse's assistant comes in to take my vitals. I can't understand why it's more important to take my temperature and blood pressure instead of letting me sleep. And why every few hours? I'm fine. Jesus. Plus, she kind of freaks me out and I make Boris stay in the room with me every time she enters. She is always chomping on her gum so loudly it's hard to hear anything else. But the next morning through her chomps she tells me that she hopes my son looks like me because I'm so pretty. Um...creepy? She tells me that several times. Then I think she asks me if I'm Christian, but that can't be right so I say "excuse me?" "Do you go to church?" she asks. For the love of God. I was right. "No I do not go to church," I curtly respond. Now that she thinks I'm a heathen she has nothing to say to me.
I enter the NICU at 5am sans wheelchair. The nurses seem impressed that I've hobbled over so soon after a c-section. And without narcotics. They keep asking me if I'm in pain. I probably am but everything is relative. After chemo, massive surgery isn't really so bad. Nothing is. I chuckle to myself as I tell them that I'm just uncomfortable. For as long as I can remember, whenever I would ask my mom if something hurt, she would respond "no, it's just uncomfortable." I never understood why she never seemed to think anything hurt until now. Baron's nurse tells us that he did great during the night. "He's breathing well, staying warm and his CBC was good." I'm overjoyed. I have to speak to the neonatologist, but think that surely he'll be out of the NICU in no time.
So I'm surprised when Dr. Trintou tells us that Baron's CBC was not good. "His band count was very high. Although the blood culture came back clear, he's going to need a full course of antibiotics," she informs us. Fuck. I ask how long the course is. "7 days," Dr. Trintou says. 7 days!? Please shoot me now. I start sobbing. I can barely speak through the sobs but manage to blurt out that they cannot keep him for 7 days because I start chemo in 14. Susie hugs me and wipes my tears with a tissue. One of the other nurses walks over and suggests that I be moved to the room closest to the NICU and that we try to get Baron off fluids and the nasal cannula as soon as possible so that he can room with me while I'm at the hospital.
Cancer is so prevalent that there's not a single person's life it hasn't touched. Each nurse or doctor I met at the hospital had a story to share with me about their experience with cancer. Everyone wanted to know about my experience and how I was doing. And they wanted to help me however they could even if that meant bending the rules a bit for me. And interestingly, they all wanted to discuss my hair. I think I've moved out of the military phase and now look like a Chia pet.
I will not go in to detail of all the exceptions that the unbelievable nurses and doctors in the NICU made for me as they undoubtedly violate all of the hospital's rules. I will say that I am beyond grateful to them and that I spent 3 blissful days and 2 blissful nights with Baron before I was kicked out of the hospital. Baron slept on me for 72 hours straight and I nursed around the clock (another sad irony to my situation is that Baron, like Miles, latched on immediately and breastfeeding was really easy for us). I did have to give him bottles each time he ate because we were under strict instruction to feed him a certain amount of milk. It was actually incredibly stressful and I often felt as if we were being forced to force feed Baron. To keep him off fluids, he had to eat at least 30 cc's of milk. For a 6 pound, 2 day old, this seemed like an outrageous amount of food to me, but I wanted him with me. I hated trying to get him to take more from the bottle when he obviously didn't want it. I tried to get Boris to throw any left over milk away so the nurses wouldn't know when he didn't finish the requisite amount, but he refused. Boris didn't want to cross the very same people who were going out of their way to help and accommodate us. And of course...he wanted Baron to be okay. Baron often preferred to use my boob as a pillow, but I was so happy to have the snuggle time with him that I would have given up the breastfeeding all together.
I wish there was some way to blend motherhood and science and that I didn't have choose. It's one of the tragedies of the NICU. The doctors and nurses save so many little lives with science and medicine. For the truly tiny (and early), everything is monitored and controlled. There are specific "touch times" when mothers can hold or touch their babies, but the rest of the time the babies have to be in the climate controlled cribs. I heard a devastating conversation between a new mother and the nurse caring for her 4 pound twin boys born at 34 weeks in which the mother was begging the nurse to hold her babies "skin-to-skin" as she had read so much about how touch not only promotes bonding, but growth. The nurse was explaining why the babies had to be in their cribs except during "touch time." And even mothers of larger babies who could feasibly breastfeed often aren't able to successfully do so because they can't sleep in the NICU and miss too many feedings. Their milk supply dwindles and the babies won't latch on to the breast. I realize that having their babies come home as soon as possible is the most important thing, but it's all just so sad.
Another tragedy of the NICU, in my environmentally friendly and non-toxic opinion is that the NICU is well...highly toxic. For some reason I wasn't as bothered by the frequent use of xray machines as I was by watching toxic cleaning products sprayed all over the place. I realize that cleanliness is godliness at a hospital and that ensuring as sterile an environment as possible is crucial for premature babies but there are alternatives to cleaning products with harmful and harsh chemicals. One evening when Baron was rooming with us, his nurse came to take him to the NICU for a blood test. When he returned, I commented to Boris that he smelled like perfume. Boris thought the nurse must have had a lot of perfume on and it rubbed off on Baron. I later found out that they had given Baron a bath and used (gasp!) Johnson and Johnson shampoo. From then on, I instructed each nurse who cared for Baron that he was not to have any baths (I mean he's a newborn, how dirty do they think he's getting?) and they were not to use any soap, shampoo or other products on him. Since the beginning of his little couldn't have been more toxic (chemo and antibiotics - please, please shoot me), sparing him sulfates, "fragrance," and a paraben was the least I could do.
As happy as I was to have Baron in my arms 24 hours a day, I missed Miles tremendously. Miles has had like 3 colds in his entire life so of course he gets his 4th the day I give birth to Baron. I knew that Miles couldn't meet Baron while getting over a cold, but on day 4 of my hospital stay, I tell Boris that I might die if I don't see Miles. Boris brings Miles to the waiting room of the maternity ward. I had envisioned him running into my arms yelling "mama!" I know he's not the snuggliest boy, but surely he must be beside himself not seeing me for 4 days. Okay, so maybe not beside himself, but a little sad? Not so much. Miles coolly saunters over to me (Boris dressed him in a rock star outfit complete with designer jeans, a Fender t-shirt and L.A.M.B. tennis shoes), waives and says "hi, mama." Then he proceeds to wander around the floor pointing out doors, trucks, trees, windows, babies and people. He now calls all adults "man," so as each adult walked past us, Miles would yell "hi, man!" or "a man!" When he wants something he says "have it," and he spent a long time pointing to the table lamps demanding to "have it." Then one of the NICU nurses walked by and said hello to Miles. He was apparently quite taken with her, asked her to pick him up, then murmured her name the rest of the visit. I got a few hugs from him when I fed him ice cream, but without the ice cream, he could have cared less that I was there. So sad.
The next day was day 5 at the hospital and thanks to my insurance, my time was up. Dr. Ottavi made a few phone calls to the powers at be at the hospital to see if I could stay longer. She said that moms used to be able to stay at the hospital when their babies weren't discharged at the same time. The hospital basically provides a room but no care (no medical services or food). The nurse in charge of the floor comes to tell me that she can't let me stay. She says that if she makes an exception for me, she'll have to make an exception for all of the NICU moms. "I'm not going to tell any of them," I say. "So unless you are, that shouldn't be a problem. And I am an exception because as far as I know, none of the NICU moms have cancer and won't be starting chemo next week." Silence. "Well we're also full," she says. I couldn't really argue with that one, so that was that.
Boris and I spent the next 2 days and nights running back and forth between Miles and Baron. I was at the hospital between 7 and 8 in the morning so I could feed Baron and usually stayed until 4pm, at which point my parents would come to the hospital to hold him (I wanted him held as much as humanly possible) and I'd go home to play with Miles, give him dinner and put him to bed. Then it was back to the hospital until close to midnight if we didn't pass out sooner. It was agony. Having your heart split in two is brutal and guilt racking and a total nightmare. And what made it worse was the floor was not full. Far from it. Each night as Boris and I hobbled down the hallway we passed empty room after empty room.
But 2 hellish days and nights later, Baron gets the okay to come home. I hug the nurses who cared for both of us. Boris brings bagels. There's nothing like food to thank people. "You are so strong," Susie says as she loads up our bag with wipes and diapers. We promise to send updates of Baron and then are free to leave with our son. And the nightmare is over.
Wednesday, February 18, 2009
Milton Baron
My grandfather, Milton Baron, was one of the best men I've ever known.
He was generous, smart, kind and compassionate. And he was a mensch. It sounds trite, but it's true.
He ate puffed wheat cereal with milk lovingly warmed by grandmother every morning. The rest of the day he munched on raw vegetables, fish and salads with no dressing. So it was shocking that he succumbed to pancreatic cancer at the young old age of 70. I'm not sure why I was surprised since my mom was (is) one of the healthiest women I know and she too had cancer. I was pretty healthy, too. I digress. When my grandfather was diagnosed, he knew that his cancer was a death sentence. But he was determined to fight. He decided to have a risky surgery which only 5% of patients survive after 5 years in the hopes of prolonging his life. I remember sitting in the hospital with him after his surgery and listening to him tell my grandmother that his quality of life wasn't going to be good anymore. Quality of life, family and his work were everything to him. My grandfather practiced medicine until his illness required him to stop. He served a lower income population that desperately needed his services and he loved his work and patients. When he realized that he would no longer be able to practice, he quietly ensured that his wife and children were taken care of, and died.
He was the first and only man to tell me that I could have "whatever my little heart desired," (I'm still trying to get Boris on board with that one). And he was serious. So was my grandmother. If my parents wouldn't buy me something I wanted, my grandparents would. As a child I used to have weekly sleepovers at my grandparents' house. My grandfather used to tuck me in to bed at night and tell me a bedtime story. It was always the same. A recount of the day and night's activities. He and my grandmother took me on my first international trip: Israel and London when I was 13. On the beach in Tel Aviv, he wore black dress socks and dress shoes. He snored like a train. He never got mad. His temperament was even keeled and calm. Always. Upon meeting Boris, my family immediately likened him to my grandfather. I wish Boris could have met him to know what a compliment that is.
My grandfather was an avid gardener and grew stunning orchids and cymbidiums. When he gardened he looked homeless. His clothes were dirt stained and full of holes. My grandmother was mortified. He could have cared less. He never wanted to offend people. One day he was gardening and needed cardboard boxes. He went rummaging through a garbage can of a local grocery store that my grandmother regularly shopped at. One of the employees apparently thought he was homeless and gave him a few dollars. Much to my grandmother's horror, rather than embarrass her and tell her that he was a doctor who lived up the street in a giant house on Rodeo Dr., he humbly said "thank you."
He was also incredibly open minded and wanted to understand the passions of his family. When I was in the 11th grade, I took my first Women's Studies class. I was enthralled and idealistic and wanted to change the world. I went on to major in Women's Studies in college. The more I learned, the more pissed off I became. Sexism was (is) so pervasive in every aspect of our culture. I was angry and combative a good majority of the time. Particularly when it came to religion. Women's role in the bible horrified me as did the way they were treated in most devout homes. I hated that God was (is) always referred to as a man (although quite frankly I think the world is so fucked up that if there is a God, he's a he for sure). Raised as an orthodox Jew, my grandfather's commitment to Judaism and Israel were vital to him. We often battled about the role of women in the bible and their role in Jewish life. I refused to go to temple with my family during the High Holidays which was devastating to my grandfather. I remember him telling me that Women's Studies was becoming my religion. But even though he was hurt and angry, he still wanted to understand me. He read my college thesis ("Pseudofeminism in Advertising") and came to discuss it with me. "I feel like I understand you much better now," he told me before he died. And he told me how proud he was of me.
Before Boris and I got married we discussed (or rather fought about) whether I would take his last name. Initially I told him I'd change my name, but I wanted him to make his middle name my maiden name. It only seemed fair that we should take each other's names. He was hesitant. He said that he didn't expect me to change my last name, but thought it would be sad that when we had kids, they would all have his name and I wouldn't. I was shocked and responded that I didn't understand why he thought the kids would get his last name when they were coming out of my body. "That's just the way it works," Boris said. I reminded him that we used to have slaves and women couldn't vote and that's just the way it worked, but it didn't make it okay. And then my insanely smart husband actually said "I'm the man and the kids will have my last name or I'm not having kids." Jesus. That now comes in handy and I frequently remind him that he's the man and thus the breadwinner and I'm going to stay home with the kids and be a homemaker (with a nanny and housekeeper). He usually replies that that entails me having dinner on the table for him when he gets home from work and being subservient. Hilarious. We ended up agreeing that I would take his last name, we would both make my maiden name our middle names, and any children we had would also have my maiden name as their middle names. And, since I do not believe that childbearing is a partnership, I would get to choose our children's' names and he'd retain veto power if he really, really hated it.
When I became pregnant with Miles, I knew immediately that I wanted to name him after my grandfather. Before settling on Miles, Boris and I briefly discussed naming him Baron. I loved it. Boris wasn't sure. But we both loved Miles so we really didn't give much thought to other names. When I became pregnant with MWFS and was diagnosed with cancer, I wanted his name to mean miracle or warrior. The options for miracle were grim. Milagro, Chinua, Breindel...not so much. And then one day I looked up the meaning of Baron on several websites. "Young warrior," and "warrior" was its most frequent meaning. Done. Done. Done. I could once again honor my grandfather. And I could honor another woman warrior - my mom since Baron is her maiden name. And even though Boris wasn't smitten with the name, it grew on him throughout my pregnancy. And now that Baron is here with us, we couldn't imagine him with any other name.
I wish that my grandfather could have met Boris. I wish he could have seen me mellow out and not be angry all the time. I wish he could have seen me be a mother. I wish he could have enjoyed his great grandchildren. But I believe that he knows I am happy and I couldn't think of a better way to honor him than thinking of him every time I look at my beautiful boys. Miles and Baron. In honor of Milton Baron.
He was generous, smart, kind and compassionate. And he was a mensch. It sounds trite, but it's true.
He ate puffed wheat cereal with milk lovingly warmed by grandmother every morning. The rest of the day he munched on raw vegetables, fish and salads with no dressing. So it was shocking that he succumbed to pancreatic cancer at the young old age of 70. I'm not sure why I was surprised since my mom was (is) one of the healthiest women I know and she too had cancer. I was pretty healthy, too. I digress. When my grandfather was diagnosed, he knew that his cancer was a death sentence. But he was determined to fight. He decided to have a risky surgery which only 5% of patients survive after 5 years in the hopes of prolonging his life. I remember sitting in the hospital with him after his surgery and listening to him tell my grandmother that his quality of life wasn't going to be good anymore. Quality of life, family and his work were everything to him. My grandfather practiced medicine until his illness required him to stop. He served a lower income population that desperately needed his services and he loved his work and patients. When he realized that he would no longer be able to practice, he quietly ensured that his wife and children were taken care of, and died.
He was the first and only man to tell me that I could have "whatever my little heart desired," (I'm still trying to get Boris on board with that one). And he was serious. So was my grandmother. If my parents wouldn't buy me something I wanted, my grandparents would. As a child I used to have weekly sleepovers at my grandparents' house. My grandfather used to tuck me in to bed at night and tell me a bedtime story. It was always the same. A recount of the day and night's activities. He and my grandmother took me on my first international trip: Israel and London when I was 13. On the beach in Tel Aviv, he wore black dress socks and dress shoes. He snored like a train. He never got mad. His temperament was even keeled and calm. Always. Upon meeting Boris, my family immediately likened him to my grandfather. I wish Boris could have met him to know what a compliment that is.
My grandfather was an avid gardener and grew stunning orchids and cymbidiums. When he gardened he looked homeless. His clothes were dirt stained and full of holes. My grandmother was mortified. He could have cared less. He never wanted to offend people. One day he was gardening and needed cardboard boxes. He went rummaging through a garbage can of a local grocery store that my grandmother regularly shopped at. One of the employees apparently thought he was homeless and gave him a few dollars. Much to my grandmother's horror, rather than embarrass her and tell her that he was a doctor who lived up the street in a giant house on Rodeo Dr., he humbly said "thank you."
He was also incredibly open minded and wanted to understand the passions of his family. When I was in the 11th grade, I took my first Women's Studies class. I was enthralled and idealistic and wanted to change the world. I went on to major in Women's Studies in college. The more I learned, the more pissed off I became. Sexism was (is) so pervasive in every aspect of our culture. I was angry and combative a good majority of the time. Particularly when it came to religion. Women's role in the bible horrified me as did the way they were treated in most devout homes. I hated that God was (is) always referred to as a man (although quite frankly I think the world is so fucked up that if there is a God, he's a he for sure). Raised as an orthodox Jew, my grandfather's commitment to Judaism and Israel were vital to him. We often battled about the role of women in the bible and their role in Jewish life. I refused to go to temple with my family during the High Holidays which was devastating to my grandfather. I remember him telling me that Women's Studies was becoming my religion. But even though he was hurt and angry, he still wanted to understand me. He read my college thesis ("Pseudofeminism in Advertising") and came to discuss it with me. "I feel like I understand you much better now," he told me before he died. And he told me how proud he was of me.
Before Boris and I got married we discussed (or rather fought about) whether I would take his last name. Initially I told him I'd change my name, but I wanted him to make his middle name my maiden name. It only seemed fair that we should take each other's names. He was hesitant. He said that he didn't expect me to change my last name, but thought it would be sad that when we had kids, they would all have his name and I wouldn't. I was shocked and responded that I didn't understand why he thought the kids would get his last name when they were coming out of my body. "That's just the way it works," Boris said. I reminded him that we used to have slaves and women couldn't vote and that's just the way it worked, but it didn't make it okay. And then my insanely smart husband actually said "I'm the man and the kids will have my last name or I'm not having kids." Jesus. That now comes in handy and I frequently remind him that he's the man and thus the breadwinner and I'm going to stay home with the kids and be a homemaker (with a nanny and housekeeper). He usually replies that that entails me having dinner on the table for him when he gets home from work and being subservient. Hilarious. We ended up agreeing that I would take his last name, we would both make my maiden name our middle names, and any children we had would also have my maiden name as their middle names. And, since I do not believe that childbearing is a partnership, I would get to choose our children's' names and he'd retain veto power if he really, really hated it.
When I became pregnant with Miles, I knew immediately that I wanted to name him after my grandfather. Before settling on Miles, Boris and I briefly discussed naming him Baron. I loved it. Boris wasn't sure. But we both loved Miles so we really didn't give much thought to other names. When I became pregnant with MWFS and was diagnosed with cancer, I wanted his name to mean miracle or warrior. The options for miracle were grim. Milagro, Chinua, Breindel...not so much. And then one day I looked up the meaning of Baron on several websites. "Young warrior," and "warrior" was its most frequent meaning. Done. Done. Done. I could once again honor my grandfather. And I could honor another woman warrior - my mom since Baron is her maiden name. And even though Boris wasn't smitten with the name, it grew on him throughout my pregnancy. And now that Baron is here with us, we couldn't imagine him with any other name.
I wish that my grandfather could have met Boris. I wish he could have seen me mellow out and not be angry all the time. I wish he could have seen me be a mother. I wish he could have enjoyed his great grandchildren. But I believe that he knows I am happy and I couldn't think of a better way to honor him than thinking of him every time I look at my beautiful boys. Miles and Baron. In honor of Milton Baron.
Tuesday, February 17, 2009
MWFS' Arrival
I had planned on spending the morning with Miles, but he woke up late so I woke up late and before I know it, it's 730am and Boris and I are still at home. We're supposed to be at the hospital. Oh well. I shower quickly, make-out with Miles, tell him I'll see him tomorrow and introduce him to his baby brother, and Boris and I jump in the car. It's raining. And it's L.A., so everyone is driving 2 miles per hour. Since cancer, I don't stress at all about trivial things like being late so I'm a little surprised at my anxiety over the time. I suspect it's really that I'm driving to the hospital to have MWFS, but regardless, I'm anxious and being a total backseat driver. Boris just smiles at me.
We arrive at St. John's close to 800am and the parking lot for the new building that houses the maternity ward is closed. Of course. We park elsewhere and have to walk through one of the older buildings to get to where we're going. As we're making our way through the halls, I notice where we are. Radiation Oncology. I turn to Boris and say "the irony of having to walk through the Oncology Department to get to Labor and Delivery is not lost on me." He chuckles. I feel a little sick. We finally make it to Labor and Delivery and are greeted by a nurse who asks me if I'm Mrs. Shimanovsky. My first instinct is to say no as being called that often makes my skin crawl. Mrs. Shimanovsky is my mother in law, who as far as I can tell only has one redeeming quality and that is she gave birth to my husband. Not how I want to start the day off. But I say yes and Boris and I are escorted to a delivery room.
A young and very sweet nurse enters the room and asks me to fill out paperwork while she asks me a ton of questions about my health and pregnancy. When she asks about the medications I've taken during my pregnancy I answer "6 rounds of FEC ." She looks up from the computer and stares at me. "I have cancer," I tell her. She wants to know what kind. "Breast cancer." She feels compelled to tell me her "experience" with breast cancer. "My grandmother had breast cancer a few years ago. 4 years later, she got ovarian cancer and died. I just wanted to tell you because they're related, so you should be cautious." I look at Boris, puzzled. Why people feel the need to share death stories with me is a mystery and why anyone would think I'm not cautious about cancer when I fucking have it is beyond a mystery. But, I'm about to meet MWFS and don't really care what stupid and ridiculous things people say to me. Besides, it happens on a regular basis so I'm kindof getting used to it.
The nurse tells me that she's going to start an i.v. with fluids and then the anesthesiologist will be in to talk to me. I tell her that I have a port and that Dr. Ottavi already spoke to someone about accessing it so I don't have to get stuck unnecessarily. The nurse pulls something out of my chart, says "oh right," and makes a call to Oncology. An oncology nurse enters the room a few minutes later and accesses my port with no problems or complications. Phew. She starts the fluids and I wait. However, the Labor and Delivery nurse says that the fluids aren't flowing fast enough. The oncology nurse explains that all she needs is an i.v. pump. She says that the port is the fastest way to get fluids into someone - hence its use for chemotherapy. Duh. But this is Labor and Delivery and they don't know shit about pumps and ports and apparently it's too difficult to find a pump, so after I get stuck through my port, the Labor and Delivery nurse takes it out and starts a regular i.v. So annoying. But, I'm about to meet MWFS, so I can deal with multiple pricks.
Before she leaves, the nurse tells me that I'm a rock star, which I appreciate. I'm told that a lot. Boris wonders why I'm compared to rock stars so often when really, rock stars don't have the best reputations. They're generally not known for strength and courage but rather for drug and alcohol abuse and a penchant for destroying hotel rooms and cars.
Dr. Ottavi comes early to see me and we start chatting about how exciting today is. While we're chatting, 2 anesthesiologists enter the room. Roger and Kathy. Roger introduces himself and then introduces us all to Kathy. He tells me that Kathy is going to be my anesthesiologist and that I should pretend he's not there. I'm afraid she's a resident or something so even though she's asking me a zillion questions, I'm looking at Roger in slight terror. I finally look at Kathy and ask her how many epidurals she's performed. I don't mean to be rude or anything but today is really not the day for a new doctor to gain some experience. At least not with me. Today I will tolerate only the best and most experienced doctors. Kathy explains that she's been practicing for 6 years and has performed countless epidurals, she's just new to the Labor and Delivery floor. "Good question though," says Dr. Ottavi. Just checking.
As Kathy is preparing the epidural, Dr. Ottavi stands in front me as I sit up at the edge of my bed. She tells me to put my arms around her waist. I do. I start to do my yoga breathing as she rubs my back and strokes my hair. She's the best. Ever. Ever. Through my deep breaths, I ask if an epidural is painful when you're not in labor. I don't even remember it with Miles because I was in agony. They could have shoved a jackhammer into my back and I would have thanked them if drugs came out of it. Dr. Ottavi says, "compared to what you've been through, it will be nothing." "It's much better when you're not in pain," Kathy chimes in. Wrong. It's much, much worse when you're not in pain. When you're in excruciating pain you barely notice that a giant needle is being shoved into your spine. When you're not in pain, um, you notice. The whole thing is pretty gross since I can hear the needle grinding into my bones. Kathy and Roger say many times that I'm "about to feel a lot of pressure." "Pressure" is apparently code for "this is going to hurt like hell." I think I scream "ouch!" several times, but then it's over. My back hurts as I get up to use the bathroom for the last time before I go into surgery. When I come out of the bathroom, there's a wheelchair waiting for me and I'm wheeled into the operating room.
I'm transferred to a bed while the doctors are preparing the room. As I'm staring up at the stark white ceiling with alien looking fluorescent lighting, I can't help but think how unnatural this all is. It's so far from my wanted natural birth at home in a bathtub. True I'll suffer no pain, but the sterile hospital and planned birth is so odd. I can hear the doctors setting up all of their equipment and the chatter of their conversation. Roger and Kathy are discussing food. One of my favorite topics. Roger is telling Kathy about a Chinese dumpling restaurant in Monrovia. I don't know where Monrovia is, but ask if it has soup dumplings. Roger says it does and then almost simultaneously we both ask the other if s/he has been to Joe Shanghai in New York. We both have and agree it has the best soup dumplings ever. We also discuss Pizzeria Mozza and our favorite burgers (In n' Out because neither of us like thick patties). Roger and I continue to chat food while Dr. Ottavi says she'll have to write all of these restaurants down later on. And then it's time to begin.
Boris isn't in the room yet and before he arrives I smell burning. It's disgusting. Within a minute though, Boris is by my side and tells me to try not to smell anything. He knows me so well. Apparently, I've already been opened up (hence the burning smell. I just didn't realize it was my flesh). I ask for more drugs several times as the "pressure" I'm warned about hurts. After what seems like too long, Dr. Ottavi says "we're close to the baby. Just a few more minutes." And then I hear the best sound in the whole world. Crying. Loud, strong, healthy crying. Although Dr. Ottavi was under strict instruction to clean Miles off before handing him to me (yes, I'm his Mom and love him no matter what - but if I have the choice I'll skip the blood and goo from childbirth), she hands my baby to me immediately. Blood, goo and all. I sob and sob as I look at his perfect little face. "Is he okay," I ask her? "Does he look healthy and normal?" "Perfectly," Dr. Ottavi boasts.
"What's his name?" she asks. "Baron. His name is Baron."
Boris and I take turns holding Baron as I'm closed back up. And then we all go to the recovery room. I hold Baron for 2 of the best and most tender hours before he and Boris go to the nursery for his first examination and bath. "Hurry back," I tell Boris as they walk away. "I want to hold him every second I can."
Dr. Ottavi comes to say goodbye to me before she leaves the hospital. My eyes well up with tears as I tell her that I worship her and am so appreciative of everything she has done for me and Baron. And how relieved I am that he's healthy and perfect. "I worship you, too," she says as her eyes also well up with tears. "You are so brave," she tells me and kisses my cheek. "I know you have a long, long road ahead of you with a lot of uncertainty, but you have come so far and what a relief to know that Baron is here and safe and healthy." What a relief indeed.
But Boris and Baron are gone for way too long. I start harassing the nurse after 20 minutes asking what's going on. "Baron's having a little difficulty getting warm," she says. "He's under the heater. Not uncommon at all." That doesn't sound so bad. But the minutes continue to slowly pass and I'm still waiting to get him back into my arms. After an hour I can't take it anymore and I ask the nurse to get Boris. Boris comes in to tell me that Baron is still having some difficulty breathing and the nurse wants to take him to the NICU for examination. My heart sinks. This can't be happening. I am terrified that something is terribly wrong. Boris tells me that he's going to the NICU with Baron and will come back with more information.
Another hour passes. I'm wheeled up to my room. It's been 2 hours since I've seen Baron and I'm dying. Dying. Finally Boris appears. "Baron is still working too hard to breathe," he whispers. "The doctors took a chest xray and there are some patches on his lungs that could be a sign of infection. I start crying. "I can't believe my baby is 4 hours old and has already had an xray. This is all my fault. I've ruined his life." Boris reminds me that he wouldn't have a life at all if it weren't for me and says that the neonatologist will be in shortly to talk to us. Dr. Trintou is blunt and to the point. "Your baby will be just fine, but he'll need antibiotics. We're waiting for results from his blood test to know how long." I learn that Baron will have to stay in the NICU for the night.
I am beside myself. Babies should be held by their mothers when they are born. Not whisked off to a cold and sterile room with strangers while medical tests are performed on them. This is so far from what I had envisioned. I was to have a perfectly healthy baby whom I would hold non-stop for 3 days in the hospital before we were allowed to go home to enjoy a week and a half of family bliss before I start chemo again. Now I'm in a room without my baby and don't know how long he and I will be separated. And I still have almost zero information about what's actually wrong with him and why he's in there at all. My nurse comes in to take my vitals. I tell her that I need to go to the NICU immediately. She tells me she has to find a wheelchair for me. I wait. And wait. And wait. Almost an hour passes. I lose it. I tell her that it's been 5 hours since I've seen my baby and I have to see him NOW. "We just need a wheelchair," she says and smiles." "Well you have to find one now. Or I can walk," I tell her. She doesn't think I can walk since I had massive surgery a few hours ago, but she doesn't know me. They could have cut off my legs and I could still walk to see my baby. "I can walk," I say again. She says no. "Or you can wheel me in my bed and then I'll just take a few steps to a chair in the NICU." She says no. "My parents have a wheelchair at their house. They can bring it here." She says no. So I have no choice but to cry and say "I have cancer and am starting chemo in 2 weeks. I will have far less time to be with my baby once that happens. So I have to see my baby right now." A wheelchair appears in my room 5 minutes later.
After 5 hours, I finally see Baron again.
We arrive at St. John's close to 800am and the parking lot for the new building that houses the maternity ward is closed. Of course. We park elsewhere and have to walk through one of the older buildings to get to where we're going. As we're making our way through the halls, I notice where we are. Radiation Oncology. I turn to Boris and say "the irony of having to walk through the Oncology Department to get to Labor and Delivery is not lost on me." He chuckles. I feel a little sick. We finally make it to Labor and Delivery and are greeted by a nurse who asks me if I'm Mrs. Shimanovsky. My first instinct is to say no as being called that often makes my skin crawl. Mrs. Shimanovsky is my mother in law, who as far as I can tell only has one redeeming quality and that is she gave birth to my husband. Not how I want to start the day off. But I say yes and Boris and I are escorted to a delivery room.
A young and very sweet nurse enters the room and asks me to fill out paperwork while she asks me a ton of questions about my health and pregnancy. When she asks about the medications I've taken during my pregnancy I answer "6 rounds of FEC ." She looks up from the computer and stares at me. "I have cancer," I tell her. She wants to know what kind. "Breast cancer." She feels compelled to tell me her "experience" with breast cancer. "My grandmother had breast cancer a few years ago. 4 years later, she got ovarian cancer and died. I just wanted to tell you because they're related, so you should be cautious." I look at Boris, puzzled. Why people feel the need to share death stories with me is a mystery and why anyone would think I'm not cautious about cancer when I fucking have it is beyond a mystery. But, I'm about to meet MWFS and don't really care what stupid and ridiculous things people say to me. Besides, it happens on a regular basis so I'm kindof getting used to it.
The nurse tells me that she's going to start an i.v. with fluids and then the anesthesiologist will be in to talk to me. I tell her that I have a port and that Dr. Ottavi already spoke to someone about accessing it so I don't have to get stuck unnecessarily. The nurse pulls something out of my chart, says "oh right," and makes a call to Oncology. An oncology nurse enters the room a few minutes later and accesses my port with no problems or complications. Phew. She starts the fluids and I wait. However, the Labor and Delivery nurse says that the fluids aren't flowing fast enough. The oncology nurse explains that all she needs is an i.v. pump. She says that the port is the fastest way to get fluids into someone - hence its use for chemotherapy. Duh. But this is Labor and Delivery and they don't know shit about pumps and ports and apparently it's too difficult to find a pump, so after I get stuck through my port, the Labor and Delivery nurse takes it out and starts a regular i.v. So annoying. But, I'm about to meet MWFS, so I can deal with multiple pricks.
Before she leaves, the nurse tells me that I'm a rock star, which I appreciate. I'm told that a lot. Boris wonders why I'm compared to rock stars so often when really, rock stars don't have the best reputations. They're generally not known for strength and courage but rather for drug and alcohol abuse and a penchant for destroying hotel rooms and cars.
Dr. Ottavi comes early to see me and we start chatting about how exciting today is. While we're chatting, 2 anesthesiologists enter the room. Roger and Kathy. Roger introduces himself and then introduces us all to Kathy. He tells me that Kathy is going to be my anesthesiologist and that I should pretend he's not there. I'm afraid she's a resident or something so even though she's asking me a zillion questions, I'm looking at Roger in slight terror. I finally look at Kathy and ask her how many epidurals she's performed. I don't mean to be rude or anything but today is really not the day for a new doctor to gain some experience. At least not with me. Today I will tolerate only the best and most experienced doctors. Kathy explains that she's been practicing for 6 years and has performed countless epidurals, she's just new to the Labor and Delivery floor. "Good question though," says Dr. Ottavi. Just checking.
As Kathy is preparing the epidural, Dr. Ottavi stands in front me as I sit up at the edge of my bed. She tells me to put my arms around her waist. I do. I start to do my yoga breathing as she rubs my back and strokes my hair. She's the best. Ever. Ever. Through my deep breaths, I ask if an epidural is painful when you're not in labor. I don't even remember it with Miles because I was in agony. They could have shoved a jackhammer into my back and I would have thanked them if drugs came out of it. Dr. Ottavi says, "compared to what you've been through, it will be nothing." "It's much better when you're not in pain," Kathy chimes in. Wrong. It's much, much worse when you're not in pain. When you're in excruciating pain you barely notice that a giant needle is being shoved into your spine. When you're not in pain, um, you notice. The whole thing is pretty gross since I can hear the needle grinding into my bones. Kathy and Roger say many times that I'm "about to feel a lot of pressure." "Pressure" is apparently code for "this is going to hurt like hell." I think I scream "ouch!" several times, but then it's over. My back hurts as I get up to use the bathroom for the last time before I go into surgery. When I come out of the bathroom, there's a wheelchair waiting for me and I'm wheeled into the operating room.
I'm transferred to a bed while the doctors are preparing the room. As I'm staring up at the stark white ceiling with alien looking fluorescent lighting, I can't help but think how unnatural this all is. It's so far from my wanted natural birth at home in a bathtub. True I'll suffer no pain, but the sterile hospital and planned birth is so odd. I can hear the doctors setting up all of their equipment and the chatter of their conversation. Roger and Kathy are discussing food. One of my favorite topics. Roger is telling Kathy about a Chinese dumpling restaurant in Monrovia. I don't know where Monrovia is, but ask if it has soup dumplings. Roger says it does and then almost simultaneously we both ask the other if s/he has been to Joe Shanghai in New York. We both have and agree it has the best soup dumplings ever. We also discuss Pizzeria Mozza and our favorite burgers (In n' Out because neither of us like thick patties). Roger and I continue to chat food while Dr. Ottavi says she'll have to write all of these restaurants down later on. And then it's time to begin.
Boris isn't in the room yet and before he arrives I smell burning. It's disgusting. Within a minute though, Boris is by my side and tells me to try not to smell anything. He knows me so well. Apparently, I've already been opened up (hence the burning smell. I just didn't realize it was my flesh). I ask for more drugs several times as the "pressure" I'm warned about hurts. After what seems like too long, Dr. Ottavi says "we're close to the baby. Just a few more minutes." And then I hear the best sound in the whole world. Crying. Loud, strong, healthy crying. Although Dr. Ottavi was under strict instruction to clean Miles off before handing him to me (yes, I'm his Mom and love him no matter what - but if I have the choice I'll skip the blood and goo from childbirth), she hands my baby to me immediately. Blood, goo and all. I sob and sob as I look at his perfect little face. "Is he okay," I ask her? "Does he look healthy and normal?" "Perfectly," Dr. Ottavi boasts.
"What's his name?" she asks. "Baron. His name is Baron."
Boris and I take turns holding Baron as I'm closed back up. And then we all go to the recovery room. I hold Baron for 2 of the best and most tender hours before he and Boris go to the nursery for his first examination and bath. "Hurry back," I tell Boris as they walk away. "I want to hold him every second I can."
Dr. Ottavi comes to say goodbye to me before she leaves the hospital. My eyes well up with tears as I tell her that I worship her and am so appreciative of everything she has done for me and Baron. And how relieved I am that he's healthy and perfect. "I worship you, too," she says as her eyes also well up with tears. "You are so brave," she tells me and kisses my cheek. "I know you have a long, long road ahead of you with a lot of uncertainty, but you have come so far and what a relief to know that Baron is here and safe and healthy." What a relief indeed.
But Boris and Baron are gone for way too long. I start harassing the nurse after 20 minutes asking what's going on. "Baron's having a little difficulty getting warm," she says. "He's under the heater. Not uncommon at all." That doesn't sound so bad. But the minutes continue to slowly pass and I'm still waiting to get him back into my arms. After an hour I can't take it anymore and I ask the nurse to get Boris. Boris comes in to tell me that Baron is still having some difficulty breathing and the nurse wants to take him to the NICU for examination. My heart sinks. This can't be happening. I am terrified that something is terribly wrong. Boris tells me that he's going to the NICU with Baron and will come back with more information.
Another hour passes. I'm wheeled up to my room. It's been 2 hours since I've seen Baron and I'm dying. Dying. Finally Boris appears. "Baron is still working too hard to breathe," he whispers. "The doctors took a chest xray and there are some patches on his lungs that could be a sign of infection. I start crying. "I can't believe my baby is 4 hours old and has already had an xray. This is all my fault. I've ruined his life." Boris reminds me that he wouldn't have a life at all if it weren't for me and says that the neonatologist will be in shortly to talk to us. Dr. Trintou is blunt and to the point. "Your baby will be just fine, but he'll need antibiotics. We're waiting for results from his blood test to know how long." I learn that Baron will have to stay in the NICU for the night.
I am beside myself. Babies should be held by their mothers when they are born. Not whisked off to a cold and sterile room with strangers while medical tests are performed on them. This is so far from what I had envisioned. I was to have a perfectly healthy baby whom I would hold non-stop for 3 days in the hospital before we were allowed to go home to enjoy a week and a half of family bliss before I start chemo again. Now I'm in a room without my baby and don't know how long he and I will be separated. And I still have almost zero information about what's actually wrong with him and why he's in there at all. My nurse comes in to take my vitals. I tell her that I need to go to the NICU immediately. She tells me she has to find a wheelchair for me. I wait. And wait. And wait. Almost an hour passes. I lose it. I tell her that it's been 5 hours since I've seen my baby and I have to see him NOW. "We just need a wheelchair," she says and smiles." "Well you have to find one now. Or I can walk," I tell her. She doesn't think I can walk since I had massive surgery a few hours ago, but she doesn't know me. They could have cut off my legs and I could still walk to see my baby. "I can walk," I say again. She says no. "Or you can wheel me in my bed and then I'll just take a few steps to a chair in the NICU." She says no. "My parents have a wheelchair at their house. They can bring it here." She says no. So I have no choice but to cry and say "I have cancer and am starting chemo in 2 weeks. I will have far less time to be with my baby once that happens. So I have to see my baby right now." A wheelchair appears in my room 5 minutes later.
After 5 hours, I finally see Baron again.
Monday, February 16, 2009
To my Miracle Warrior
To my Miracle Warrior,
I haven't slept in days. I am too nervous and excited to meet you. I lie in bed with my heart pounding thinking about the moment I will see your face and hold you in my arms. Although I haven't met you yet, I am already so in love with you and think you are truly amazing. You have endured so much already and yet you fight and grow and thrive and are a constant reminder to me that I have to live. I am terrified that the doctors are wrong and that you won't be perfect and that it will be my fault. I hope that someday you will understand that I have done, am doing and will always do everything I believe is best for you and that everything I have done, am doing and will do is out of the tremendous and overwhelming love I have for you and your brother. The two of you have pulled me through the most terrifying and challenging period in my life and for that I am so grateful.
Tomorrow my life will change forever. I will be the mother of two. After 10 long months, I will finally see your precious face. Miles will be a big brother. I've cried all day thinking of how lucky Miles and you are to have each other. And how sad Miles may be to have to give up his place in the spotlight. I sat with Miles tonight and kissed his little face and told him that tomorrow he'll get to meet you. He smiled, patted my belly and said "baby." Baby Miracle Warrior. We all can't wait to meet you. You are a miracle. You are a warrior.
I love you more than I can ever properly express. I love you. I love you. I love you.
And I will see you tomorrow.
I haven't slept in days. I am too nervous and excited to meet you. I lie in bed with my heart pounding thinking about the moment I will see your face and hold you in my arms. Although I haven't met you yet, I am already so in love with you and think you are truly amazing. You have endured so much already and yet you fight and grow and thrive and are a constant reminder to me that I have to live. I am terrified that the doctors are wrong and that you won't be perfect and that it will be my fault. I hope that someday you will understand that I have done, am doing and will always do everything I believe is best for you and that everything I have done, am doing and will do is out of the tremendous and overwhelming love I have for you and your brother. The two of you have pulled me through the most terrifying and challenging period in my life and for that I am so grateful.
Tomorrow my life will change forever. I will be the mother of two. After 10 long months, I will finally see your precious face. Miles will be a big brother. I've cried all day thinking of how lucky Miles and you are to have each other. And how sad Miles may be to have to give up his place in the spotlight. I sat with Miles tonight and kissed his little face and told him that tomorrow he'll get to meet you. He smiled, patted my belly and said "baby." Baby Miracle Warrior. We all can't wait to meet you. You are a miracle. You are a warrior.
I love you more than I can ever properly express. I love you. I love you. I love you.
And I will see you tomorrow.
Monday, February 9, 2009
The Beginning of the End
The week before Miracle Warrior (who I've begun calling MWFS for Miracle Warrior Fiedler Shimanovsky) arrives I have a slew of doctors' appointments. Everyone wants to see or at least speak to me before I deliver. First, I have a consultation with my new surgeon, Ed Phillips. I haven't been to the Breast Center in at least a month and the receptionist compliments my hair as I sign the necessary paperwork. I'm led to one of the examination rooms and am introduced to Dr. Phillips' assistant. She needs to update the system and asks me a zillion questions, most of which I've answered before. I'm annoyed and hate having to answer them, especially because I know I'm going to have to answer them all again once I meet with the doctor. Plus, some of the rote questions are so fucking dumb that quite honestly I don't know how to answer. Like "do you have any pain." Um, what kind of pain? MWFS is ripping my pelvis apart. Does she want to know about my vagina pain? Emotional pain? I'm afraid I'm going to die. That's painful. I have to ask her to clarify. She means cancer pain. I'm not sure what that means but I say no. After at least 30 minutes, I've answered everything and she leaves.
Dr. Phillips enters the room and gives me a hearty handshake. He's a stout man with a ring of white hair on his mostly bald head. He is not surgeon-like at all. He's warm and asks me several times how I'm feeling and doing and holding up. It makes me uncomfortable to have to say "I'm hanging in there" so many times. The more I say it the more I wonder if it's true. We go through my "case" and he examines me. We discuss radiation and he suggests that I speak to Dr. Botnick again about how necessary the radiation is and says that in his opinion, radiation will make any slight lymphedema I have worse. Ugh. He asks about my plan for reconstruction and says that he totally agrees with my decision to have expanders/implants instead of a more complicated flap surgery that entails a lengthier and more difficult recovery. I had been warned that I might need a blood transfusion during the mastectomies. Blood transfusions scare the shit out of me so I ask him if I'll need one. "Definitely," he says. "It's not 100%, but close. With the removal of two large breasts, it's almost a certainty." I'm so upset. I ask if I can donate my own blood. He doubts it since it's too early to donate now for a June surgery, plus I'm pregnant and MWFS needs all of my blood and I'll need it for my c-section. Then I'll be on chemo and my counts will be all fucked up. He suggests finding family and friends who will donate blood for me. I know I could have 98730023 pints of blood donated in a second, but I'm still really upset and really scared. If there's a .0001% of anything going wrong with the donated blood, it will happen to me.
The meeting with Dr. Phillips takes about 45 minutes and then we're done. It seems strange that we meet for such a brief period of time for such a long surgery, but I guess there's not too many variables for him. He tells me that he books up far in advance, so I need to set a surgery date with his assistant. I ask him how we pick a date when I don't know exactly when I'll be done with chemo. Plus, what if I need longer than the standard 2 weeks to recover before surgery? Will I have to wait months before my operation?? He promises that he would move heaven and earth for me and would never make me wait for any prolonged period of time to get this over with. "You've been through enough," he says. Damn straight.
I have a short period of time to spare before my next appointment of the day with Dr. McAndrew. I call Dr. Botnick to discuss my radiation therapy. He's not in the office but calls back within minutes. I ask him the details of my therapy. What exactly will he be radiating? Exactly how many rounds? Is he sure I need it? How are my odds of living improved with radiation? What about lymphedema and other side effects? Dr. Phillips had mentioned that in his opinion, if the lymph node near the clavicle is radiated the risk of lymphedema is high. After I spit out my 20 questions, Dr. Botnick begins by saying "let me remind you that you absolutely need radiation." I know. I know. I tell him that Boris has already told me that he will kill me if I don't get it. "And I'm second in line," Dr. Botnick says. He goes on. "I'm being conservative with numbers but your chances of survival are increased by 2-4% with radiation. But more importantly, your chances of a localized recurrence are decreased by 20%. If the cancer recurs in a local lymph node, which is more likely without radiation, your chances of survival are much lower. You have to do everything you can to prevent the cancer from coming back. That's why you're having radiation. Forget about everything else." He tells me that if my arm isn't significantly swollen when I start radiation (it's not - in fact during my most recent lymphedema treatment, the therapist measured my arms and they are the exact same size except for a .05 cm. difference in my wrist!) then radiation shouldn't change that (but many breast cancer patients I am friends with disagree). I guess we shall see. Dr. Botnick also tells me that he wants to meet with me before I have surgery. He still doesn't think I need a double mastectomy. "Just promise you'll call me before you do anything." Although there is nothing on earth he can say or do to change my mind, I promise.
Then I go to Tower to meet with Dr. McAndrew. Amazingly I only wait 5 minutes before seeing her. We discuss MWFS and then it's down to business about my second cycle of chemo. I will be receiving 2 chemo agents: taxol and carboplatin. She tells me that most of the research shows that weekly taxol is not only more effective but easier to tolerate. Done. However, most of the research on carboplatin is based on doses every 3 weeks. She has many patients who have received weekly doses and she believes that it's very effective, but there's not much data yet to verify this. Fuck. If there's no data, why think it's okay? She also tells me that although 12 rounds is optimal, I may only have 9 depending on how I tolerate the agents. The neuropathy can get so bad that it could cause permanent damage. And the risk of infection is incredibly high. So if I get a fever or infection that turns septic, the schedule and rounds will change. Fuck. Fuck. Fuck.
Before I leave I have a blood draw and set up my scans. The nurse taking my blood compliments my hair and how much has grown back. Then she says, "you know it's going to fall out again, right?" Ugh. Yes, I know. She tells me that when I'm setting up my chemo schedule, to set up the first treatment as early in the morning as possible. "The first infusion can take all day." I don't understand. She explains that many women have an allergic reaction to the drugs (including shortness of breath, skin reactions, burning and a host of other really pleasant things). "If you have a reaction, we stop the infusion, watch you, then start the infusion again when the reaction subsides." Jesus Christ. I still can't believe this shit.
I set up my scans and as the nurse is telling me what I can and can't eat before each and how long they will take (one of them takes 6 hours!) I just stare at her blankly. "It's so surreal setting these all up," I tell her. "I just can't believe these scans are for me." But they are.
The rest of my week is an emotional roller coaster. I am getting more nervous and excited for MWFS' arrival and more depressed and nervous and sad that I start chemo again on March 2. Just 2 weeks after I give birth. I didn't realize how horrible I felt on chemo until I wasn't on it. I've been feeling so good and happy these past few weeks. And now I'm just so sad to know that I'm going to feel like death again so soon. Maybe worse than death. Who knows? I hate the unknown. I hate chemo. I hate cancer.
But setting up my scans and second round of chemo means that I am approaching the beginning of the worst part of my treatment. The sooner it starts, the sooner it ends.
Dr. Phillips enters the room and gives me a hearty handshake. He's a stout man with a ring of white hair on his mostly bald head. He is not surgeon-like at all. He's warm and asks me several times how I'm feeling and doing and holding up. It makes me uncomfortable to have to say "I'm hanging in there" so many times. The more I say it the more I wonder if it's true. We go through my "case" and he examines me. We discuss radiation and he suggests that I speak to Dr. Botnick again about how necessary the radiation is and says that in his opinion, radiation will make any slight lymphedema I have worse. Ugh. He asks about my plan for reconstruction and says that he totally agrees with my decision to have expanders/implants instead of a more complicated flap surgery that entails a lengthier and more difficult recovery. I had been warned that I might need a blood transfusion during the mastectomies. Blood transfusions scare the shit out of me so I ask him if I'll need one. "Definitely," he says. "It's not 100%, but close. With the removal of two large breasts, it's almost a certainty." I'm so upset. I ask if I can donate my own blood. He doubts it since it's too early to donate now for a June surgery, plus I'm pregnant and MWFS needs all of my blood and I'll need it for my c-section. Then I'll be on chemo and my counts will be all fucked up. He suggests finding family and friends who will donate blood for me. I know I could have 98730023 pints of blood donated in a second, but I'm still really upset and really scared. If there's a .0001% of anything going wrong with the donated blood, it will happen to me.
The meeting with Dr. Phillips takes about 45 minutes and then we're done. It seems strange that we meet for such a brief period of time for such a long surgery, but I guess there's not too many variables for him. He tells me that he books up far in advance, so I need to set a surgery date with his assistant. I ask him how we pick a date when I don't know exactly when I'll be done with chemo. Plus, what if I need longer than the standard 2 weeks to recover before surgery? Will I have to wait months before my operation?? He promises that he would move heaven and earth for me and would never make me wait for any prolonged period of time to get this over with. "You've been through enough," he says. Damn straight.
I have a short period of time to spare before my next appointment of the day with Dr. McAndrew. I call Dr. Botnick to discuss my radiation therapy. He's not in the office but calls back within minutes. I ask him the details of my therapy. What exactly will he be radiating? Exactly how many rounds? Is he sure I need it? How are my odds of living improved with radiation? What about lymphedema and other side effects? Dr. Phillips had mentioned that in his opinion, if the lymph node near the clavicle is radiated the risk of lymphedema is high. After I spit out my 20 questions, Dr. Botnick begins by saying "let me remind you that you absolutely need radiation." I know. I know. I tell him that Boris has already told me that he will kill me if I don't get it. "And I'm second in line," Dr. Botnick says. He goes on. "I'm being conservative with numbers but your chances of survival are increased by 2-4% with radiation. But more importantly, your chances of a localized recurrence are decreased by 20%. If the cancer recurs in a local lymph node, which is more likely without radiation, your chances of survival are much lower. You have to do everything you can to prevent the cancer from coming back. That's why you're having radiation. Forget about everything else." He tells me that if my arm isn't significantly swollen when I start radiation (it's not - in fact during my most recent lymphedema treatment, the therapist measured my arms and they are the exact same size except for a .05 cm. difference in my wrist!) then radiation shouldn't change that (but many breast cancer patients I am friends with disagree). I guess we shall see. Dr. Botnick also tells me that he wants to meet with me before I have surgery. He still doesn't think I need a double mastectomy. "Just promise you'll call me before you do anything." Although there is nothing on earth he can say or do to change my mind, I promise.
Then I go to Tower to meet with Dr. McAndrew. Amazingly I only wait 5 minutes before seeing her. We discuss MWFS and then it's down to business about my second cycle of chemo. I will be receiving 2 chemo agents: taxol and carboplatin. She tells me that most of the research shows that weekly taxol is not only more effective but easier to tolerate. Done. However, most of the research on carboplatin is based on doses every 3 weeks. She has many patients who have received weekly doses and she believes that it's very effective, but there's not much data yet to verify this. Fuck. If there's no data, why think it's okay? She also tells me that although 12 rounds is optimal, I may only have 9 depending on how I tolerate the agents. The neuropathy can get so bad that it could cause permanent damage. And the risk of infection is incredibly high. So if I get a fever or infection that turns septic, the schedule and rounds will change. Fuck. Fuck. Fuck.
Before I leave I have a blood draw and set up my scans. The nurse taking my blood compliments my hair and how much has grown back. Then she says, "you know it's going to fall out again, right?" Ugh. Yes, I know. She tells me that when I'm setting up my chemo schedule, to set up the first treatment as early in the morning as possible. "The first infusion can take all day." I don't understand. She explains that many women have an allergic reaction to the drugs (including shortness of breath, skin reactions, burning and a host of other really pleasant things). "If you have a reaction, we stop the infusion, watch you, then start the infusion again when the reaction subsides." Jesus Christ. I still can't believe this shit.
I set up my scans and as the nurse is telling me what I can and can't eat before each and how long they will take (one of them takes 6 hours!) I just stare at her blankly. "It's so surreal setting these all up," I tell her. "I just can't believe these scans are for me." But they are.
The rest of my week is an emotional roller coaster. I am getting more nervous and excited for MWFS' arrival and more depressed and nervous and sad that I start chemo again on March 2. Just 2 weeks after I give birth. I didn't realize how horrible I felt on chemo until I wasn't on it. I've been feeling so good and happy these past few weeks. And now I'm just so sad to know that I'm going to feel like death again so soon. Maybe worse than death. Who knows? I hate the unknown. I hate chemo. I hate cancer.
But setting up my scans and second round of chemo means that I am approaching the beginning of the worst part of my treatment. The sooner it starts, the sooner it ends.
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