It's my last round of chemo before I deliver. Amara is in town so she takes me. She's never been to Tower or the treatment center and she can't believe how big it is. There's a chair shortage again, so I begin treatment in a private room but don't wait long for my chair. There's no drama, just treatment. The only drama comes from Boris and lunch. When he left for work in the morning, he said I should pick any restaurant I wanted to get lunch from and he'd bring it to Tower for us. Amara and I decide we want chop salads from La Scala (sans salami) and I inform Boris. Boris however decides that parking is kindof a pain in the ass but passively aggressively asks me if I'm sure that's what I want to eat. Um, yes, I'm sure which is why I asked for it, but I don't care enough so we order Chin Chin which can be delivered. Then Boris doesn't show up until 2:00pm. Oh Boris.
I only have 2 questions. One for Anne and one for the nutritionist. My hair has started to grow back and I'm scared it's a sign that the chemo isn't working. I ask Anne. She assures me my hair growth has no bearing on the efficacy of the chemo and tells me that for some reason, lots of women's hair starts to grow back before their last round. She also assures me that it will fall out again as soon as cycle 2 of chemo starts, so I shouldn't get too excited. Rude. I speak to the nutritionist about my break. I want to know if I should start my cancer prevention diet (i.e., broccoli for breakfast, lunch and dinner). She tells me to keep eating as much protein as possible. "You're preparing your body for surgery and more chemo and we want your baby to get as big and strong and possible." So I can still eat In n' Out. Phew.
Before I know it, I feel like shit and am done. Done for 7 whole weeks. As happy as I am (and I am, I am!) I'm afraid that the cancer will come back or get smarter and stronger during my break -- the way that an infection does if you don't take all of your antibiotics. I may feel better and start sprouting hair, but maybe I'm developing some sort of cancer super strain. Anne says it's totally normal to feel afraid but reminds me that I'm in the best hands and they wouldn't have told me it's safe to have a break from chemo if they knew that it wasn't. So, that's it. Now I'm just a pregnant person waiting to deliver. A bald, pregnant person who still is afraid of dying every day, but no more treatment or feeling like crap for 7 weeks. 7 weeks!! And I get to meet my Miracle Warrior so soon. February 17 can't get here fast enough. I want to know for sure that he's perfect and normal and healthy.
Before we leave, several Tower staff members and volunteers come by to wish me a happy new year. Some ask what I'm doing to ring in the new year. I don't want to be rude or anything, but I'm getting chemo the day before, so what the hell do they think I'm doing? Dumbest question ever?
6 rounds down. Delivery, 12 rounds of chemo, double mastectomy, radiation, reconstruction to go.
Tuesday, December 30, 2008
Tuesday, December 23, 2008
Resident Evil
So it's my doctor free week (sort of) meaning that I don't have to go to Tower. Instead, I have the usual appointments with my acupuncturist, o.b. and perinatologist. God forbid I actually have a drama free week. Monday started out like usual. I had acupuncture with Dr. Dao and then saw Dr. Ottavi. Miracle is doing great. I even have the energy for Pilates and then go home to play with Miles. Around 430, I realize that I've tried to pee about 27 times in a 10 minute period and think that I must have a bladder infection. Nice. I call Dr. Ottavi who orders pregnancy safe antibiotics for me. I take them at 500. But by then, I also have intense pain along the right side of my belly. My brother comes over and insists that we go to the emergency room. I think I'm okay, just in pain, but am convinced it will go away. It doesn't. I call Dr. Ottavi and Dr. McAndrew. I speak to both and both agree with Seth and insist that I go to the emergency room. Boris comes home as Seth and I are piling into his car. He jumps in and we head to Cedars.
Walking into an emergency room 7.5 months pregnant with abdominal pain is never a good thing. It's even worse when your o.b. only has privileges at St. John's. I'm ushered up to the maternity ward immediately. As I'm crying in the elevator, people are congratulating me. I realize it's normal for them to think I'm in labor, but I want to shoot them. I'm taken to a triage room. It's the ghetto and I'm very glad I'll be delivering at St. John's. A nurse enters the room and wants to know what's going on. I explain to her that I have cancer, am on chemotherapy and am having horrific pain on the right side of my abdomen. I tell her that I thought I had gotten a bladder infection about an hour ago so maybe the infection has spread seeing as I have no immune system. I explain that I am not in labor, that I know my baby is fine, that I have had a child and know I'm not having contractions and would like to see a real doctor immediately. She smiles, but says they have to ask me routine questions and need to monitor the baby. She asks me a ton of questions about my pregnancy and then hooks me up to a fetal monitor. I can't sit still because the pain is too intense and have to take the monitor off after a few minutes. I tell her that if I can't see a real doctor soon, something terrible is going to happen to me. She doesn't seem to care. The pain is so crazy that although I haven't thrown up once from pregnancy or chemo, I proceed to throw up a truly shocking amount. I fill an entire bucket and then some. Then some that ends up on the floor is ignored by the staff and Boris ends up cleaning it up because I'm so grossed out. After 2 hours of excruciating pain, a doctor comes to see me. Let me rephrase - a resident comes to see me. I answer her questions and ask her if a real doctor is coming to see me any time soon. No offense to her, but she's 12 and an ob/gyn. I want off the maternity ward immediately.
I wait in agony for another 30 minutes and then the "chief resident," also an ob/gyn comes to see me. He's incredibly handsome and I wonder if he's a fake doctor - like on t.v. His name is Jeff. By this point, I'm hoping to die the pain is so horrific and I have no patience for people who aren't going to help me. I hear Boris telling my Dad that I'm "hostile." I prefer to think of it as advocating for my rights. No one else is. I tell Jeff that I need drugs 2.5 hours ago and that I'm pissed that no one seems to care about me, just the baby. "My baby is fine," I tell him. Jeff says that I'm there as a mother too, and he needs to take care of both of us and he can't give me pain medication until he's monitored the baby for 20 minutes. "Well, Jeff," I tell him, "I've been here for over 2 fucking hours so you and your stellar team have certainly had ample time for monitoring. And please don't patronize me about motherhood. I was diagnosed with cancer and opted to risk my life to have this baby. My tolerance for pain is more than you could possibly imagine. I have all kinds of pain and side effects on a daily basis that I suffer through without so much as a Tylenol for this baby. So if I tell you that this is the worst pain I have ever experienced in my life - like more than trying to push a 9lb+ baby out of my vagina without an epidural, which yes, Jeff, I tried to do for over an hour - I am totally fucking serious and need drugs NOW." Jeff tells me that he has treated pregnant women with cancer and that his mother had cancer (thanks for sharing) and promises that I can have pain medication after the 20 minutes of monitoring. Fine. In the meantime, I ask him why no one has taken my blood or ordered other tests to find out what the hell is wrong with me.
A nurse comes into my room a few minutes later and I ask her to hook me up to the fetal monitor (it's clear that that is not why she came into the room). I'm watching the clock like a madwoman counting down my 20 minutes. Actually, we're watching The Hills Live Aftershow and Boris is trying to understand why it's a show and why anyone cares about these people. I have less than 5 minutes to go and I tell Boris that he needs to find the nurse or doctor to make sure they give me drugs the second the 20 minutes is up. He says they'll come to us when it's time. Are you kidding!? I start screaming at him that if he doesn't get someone to ensure I get drugs the second my 20 minutes is up, I will run out into the hallway half naked in my gown and bald head and take care of it myself. It was very Terms of Endearment of me. Before either of us can leave the room, a beautiful nurse named Rachel comes in. She should be on t.v. with doctor Jeff. She tells me she's come to hook me up to the fetal monitor for 20 minutes. I go a little ballistic and tell her my 20 minutes are up in 2 minutes and she better have drugs for me. "What is going on here?" I ask. "Do you people speak to each other at all?" She leaves the room and returns to tell me that Jeff didn't order pain medication for me and he's gone into a c-section. "Rachel," I say, "I suggest you get him out of the c-section or find another doctor or nurse to write the order. This is a fucking hospital, right? Surely you can find someone to write a prescription and I know for a fact that most narcotics are safe during pregnancy." She leaves the room. Finally after 4 hours of suffering, I get a shot of morphine. It barely helps at all. Jeff comes back and tells me that he's going to order some additional tests (after 4 hours they asked for a urine sample, nothing else). It's about time. What doctor doesn't take blood immediately when you tell them you're pregnant and on chemo. Hello infection anyone!? Nurse Rachel tells me one of the ordered tests is for preeclampsia. I turn to Boris and lament that they are going to kill me. Preeclampsia?
I have to wait another 30 minutes for someone from the "i.v team" to come access my port. I totally understand that nurses on the maternity ward don't know anything about ports which is why I had wanted off the ward like 4 hours ago. My blood is taken and I'm given fluids. Jeff tells me that he's thinking I either have a kidney infection or might be passing a kidney stone and that I can no longer eat or drink anything. Not that I was chowing down or anything but I had lunch at 230, barfed it up and then some up, and was feeling weak and thirsty. Oh well. He also tells me that he's ordered an ultra-sound of my liver, kidney and gall bladder. Amazingly, even though I'm on the Labor and Delivery floor, there aren't any portable ultrasounds available so I have to go to the imaging center for my scans. Before I'm wheeled away, Dr. McAndrew comes to see me. I've never been happier to see her. "A real doctor!" I exclaim. "Dr. McAndrew, you have to help me," I cry. "No one cares that I'm in pain. They only want to monitor the baby and no one knows what they're doing." She assures me that Jeff is doing a good job but promises to get me more pain medication. She says that the results from the urine test are fine so no one is really sure what's going on. "You would have blood in your urine if you had a kidney stone," she explains, "and there's no sign of an infection. You're always rare and never an easy case," she says and smiles. "We're working on it. If the ultrasound doesn't reveal anything, we may want you to have a CT scan. Even though there is some risk to the baby, the risk is outweighed by something being wrong with you and we need to find out what it is." I'm still in so much pain that I agree to the scan if it's necessary. I also beg Dr. McAndrew to make them give me more morphine, which they do. I'm still in pain, but am no longer writhing around in agony, so I guess that's progress.
The good news as I inform Boris is that I am now totally at piece with my scheduled c-section. Initially when I got pregnant, my goal was to have a vaginal birth. I had watched The Business of Being Born and not only wanted a vaginal birth, I wanted to deliver at home, with a doula or midwife in my bathtub without any drugs. I'm serious. Ask Boris. But after 4 hours of the worst pain in my life, I'm 100% over the whole natural birth thing. I want to be hooked up to an epidural as soon as humanly possible. Pain free and civilized sounds damn good to me.
Rachel wheels in a wheelchair and I'm taken to the imaging center for my ultrasound. I'm freezing (it's crazy how warm hair keeps you and how cold chemo makes you) and nurses are wrapping me up in blankets as I'm pushed down the hall. It's very sweet. Even though I'm bald, they're asking if this is my first baby and are smiling because they think I'm in labor. I just look at Boris and roll my eyes. It's a nightmare. The ultrasound technician asks me a few questions and then starts the scan. He's running the machine over the top portion of the right side of my belly. Not at all where I'm in pain. Then he moves to the left side. "Are you going to look at where I'm actually in pain?" I ask. "I know what I'm doing, okay?" he says. "Absolutely. But I have no pain whatsoever on my left side, so just asking." Jesus. He asks where the pain is and does run the machine over the area before dismissing me. I go back up to my shitty room with the most uncomfortable bed on earth (the kind that breaks down - mommies - you know what I mean) and I wait some more. It's almost midnight and Jeff comes to the room to tell us that there's nothing out of the ordinary on the scans. He's waiting for a portable ultrasound and wants to take one last look at me and the baby and then he'll let me eat, give me more drugs and let me go to sleep. He says that all of my tests are normal. No signs of infection whatsoever and he doesn't think the CT scan is necessary. Scary that no one knows what's going on with me, but I'm relieved to not need the scan.
An hour later Jeff returns with the ultrasound. Miracle Warrior is moving around like a superstar. His foot is jammed up against the right side of my belly, right where I'm hurting most. Interesting, but highly unlikely that such a teeny tot is causing so much pain for so long. Everyone is at a loss, but I get Vicodin which actually relieves the pain, so I'm finally happy. Exhausted, starving, but not in pain. Rachel wheels me to my new room which has a bed for Boris (poor guy has been trying to sleep in a rocking chair) and orders us food. We meet our new nurse, Beverly, who tells me that the second I start to feel any pain, I should call her so she can bring me more drugs. Rachel assures her that she doesn't need to worry about me asking. Now that I'm not in agony and am not starving, Rachel and I talk about my pregnancy and my cancer and she's very sweet and caring. Boris and I eat, drink, I take Vicodin and we pass out at 300am. We get a few hours of sleep before the pain comes back and I have to call Beverly for more drugs. When she comes in she tells us that the doctors are changing shifts and they are going to discuss me at 800am. They'll determine whether I have more scans or go home a mystery.
At 730am, Miracle Warrior kicks the crap out of me and the pain is gone. Poof. Just like that. No pain whatsoever. Doctor Jeff comes to see me after the changing of the doctor guards and says that the full work up from my blood reveals absolutely nothing except for a potassium deficiency. "You were my most boring labs of the night," he says. "I can give you potassium pills or you can eat a banana." I tell him I've been potassium deficient for several weeks and I'll eat a banana and the next time I go in for hydration they'll give me potassium. I tell him that Miracle Warrior beat me up and now I don't hurt at all. "Fascinating," he says. Then he tells me that the doctors all agree (read he spoke to an actual doctor not a resident) that I can go home. Dr. McAndrew also comes by and agrees. She says that she's called Dr. Silverman and I'm to go straight to his office from the hospital. Done. She says that they're going to find someone who can flush out my port (I've been receiving fluids all night) and discharge me. A nurse enters the room and gives me my discharge instructions (all labor related). I'm to come back if I don't feel Miracle Warrior kick me 10 times in a 1 hour period (he kicks me 10 times every few minutes, so no problem there), start bleeding or a host of other totally irrelevant problems. She reminds me many times not to forget to go to Dr. Silverman's. Then she flushes my port and tells me we're free to leave. "Um, there's a giant needle in my arm," I tell her. "Aren't you going to take it out?" She says "that's your port, not a needle." OMFG. "I need to speak to someone who knows about ports, now." She tries to convince us that she knows about them and then has some sort of an epiphany, realizes I'm correct, and says that she can just pull the needle out - but there's no way I'm letting her near me. I tell Boris that we should just leave and go to Tower and have someone who knows what the hell they're doing take the needle out. That's what we do and hot nurse John is a dream after the nightmare of Cedars. He removes the needle and Boris and I go to see Dr. Silverman.
We're seen after a short wait and Miracle Warrior is a miraculous warrior who is doing great. He's actually big for his age. He's in the 66% for size and we couldn't be happier. Dr. Silverman assures me that the morphine and Vicodin didn't harm Miracle Warrior at all (he says there's very little I can do to really harm him at this point) and then we discuss my delivery. I tell him that I want to deliver at 38 weeks. He says that it's much better for me to deliver as soon as possible so that I can get on with my treatment. After my experience at Cedars, it's so shocking to hear a doctor (particularly a baby doctor) take me into account and want to do what's best for me. He says that statistically, Miracle Warrior's lungs will be fully developed at 37 weeks, and says that we should do the amnio then. If his lungs are fully mature, we'll deliver. He promises me that once his lungs are mature, there is no difference in delivering at 37 or 38 weeks and reiterates that it's better for me. He says I should come back in 4 weeks and wishes us a better and happy new year. "Things can't get worse," I say, "so it just has to better." Always a realist and never one to mince words, he says "well, it can get worse, but we're going to hope that it doesn't."
We are. We are. We are.
We go home. Miles is so happy to see us and we him. We eat lunch together and then we all nap. I don't wake up for 4 hours. I wake up to Miles yelling "hi!" and hear him toddling down the hallway. Later that evening as I'm filling up the tub for his bath, Miles pulls up my shirt and kisses my belly. Swear. He bathes, has his milk and then we snuggle before I put him to bed. After about 5 minutes of the most tender snugglage ever I ask him if he's ready for bed. "Noooo" he whispers. "Okay, monkey," I tell him. "You let me know when you're ready. We'll snuggle until you are." After a really long time in Miles minutes, he looks at me, smiles and says "bye bye." I kiss him a zillion times and put him in his crib.
Over the next few days I've experienced a few twinges that are similar to the pain that drove me to the hospital, but nothing as severe and nothing that lasts longer than a minute or two. Yet again, I'm a medical enigma. The mystery of Sharon continues.
Walking into an emergency room 7.5 months pregnant with abdominal pain is never a good thing. It's even worse when your o.b. only has privileges at St. John's. I'm ushered up to the maternity ward immediately. As I'm crying in the elevator, people are congratulating me. I realize it's normal for them to think I'm in labor, but I want to shoot them. I'm taken to a triage room. It's the ghetto and I'm very glad I'll be delivering at St. John's. A nurse enters the room and wants to know what's going on. I explain to her that I have cancer, am on chemotherapy and am having horrific pain on the right side of my abdomen. I tell her that I thought I had gotten a bladder infection about an hour ago so maybe the infection has spread seeing as I have no immune system. I explain that I am not in labor, that I know my baby is fine, that I have had a child and know I'm not having contractions and would like to see a real doctor immediately. She smiles, but says they have to ask me routine questions and need to monitor the baby. She asks me a ton of questions about my pregnancy and then hooks me up to a fetal monitor. I can't sit still because the pain is too intense and have to take the monitor off after a few minutes. I tell her that if I can't see a real doctor soon, something terrible is going to happen to me. She doesn't seem to care. The pain is so crazy that although I haven't thrown up once from pregnancy or chemo, I proceed to throw up a truly shocking amount. I fill an entire bucket and then some. Then some that ends up on the floor is ignored by the staff and Boris ends up cleaning it up because I'm so grossed out. After 2 hours of excruciating pain, a doctor comes to see me. Let me rephrase - a resident comes to see me. I answer her questions and ask her if a real doctor is coming to see me any time soon. No offense to her, but she's 12 and an ob/gyn. I want off the maternity ward immediately.
I wait in agony for another 30 minutes and then the "chief resident," also an ob/gyn comes to see me. He's incredibly handsome and I wonder if he's a fake doctor - like on t.v. His name is Jeff. By this point, I'm hoping to die the pain is so horrific and I have no patience for people who aren't going to help me. I hear Boris telling my Dad that I'm "hostile." I prefer to think of it as advocating for my rights. No one else is. I tell Jeff that I need drugs 2.5 hours ago and that I'm pissed that no one seems to care about me, just the baby. "My baby is fine," I tell him. Jeff says that I'm there as a mother too, and he needs to take care of both of us and he can't give me pain medication until he's monitored the baby for 20 minutes. "Well, Jeff," I tell him, "I've been here for over 2 fucking hours so you and your stellar team have certainly had ample time for monitoring. And please don't patronize me about motherhood. I was diagnosed with cancer and opted to risk my life to have this baby. My tolerance for pain is more than you could possibly imagine. I have all kinds of pain and side effects on a daily basis that I suffer through without so much as a Tylenol for this baby. So if I tell you that this is the worst pain I have ever experienced in my life - like more than trying to push a 9lb+ baby out of my vagina without an epidural, which yes, Jeff, I tried to do for over an hour - I am totally fucking serious and need drugs NOW." Jeff tells me that he has treated pregnant women with cancer and that his mother had cancer (thanks for sharing) and promises that I can have pain medication after the 20 minutes of monitoring. Fine. In the meantime, I ask him why no one has taken my blood or ordered other tests to find out what the hell is wrong with me.
A nurse comes into my room a few minutes later and I ask her to hook me up to the fetal monitor (it's clear that that is not why she came into the room). I'm watching the clock like a madwoman counting down my 20 minutes. Actually, we're watching The Hills Live Aftershow and Boris is trying to understand why it's a show and why anyone cares about these people. I have less than 5 minutes to go and I tell Boris that he needs to find the nurse or doctor to make sure they give me drugs the second the 20 minutes is up. He says they'll come to us when it's time. Are you kidding!? I start screaming at him that if he doesn't get someone to ensure I get drugs the second my 20 minutes is up, I will run out into the hallway half naked in my gown and bald head and take care of it myself. It was very Terms of Endearment of me. Before either of us can leave the room, a beautiful nurse named Rachel comes in. She should be on t.v. with doctor Jeff. She tells me she's come to hook me up to the fetal monitor for 20 minutes. I go a little ballistic and tell her my 20 minutes are up in 2 minutes and she better have drugs for me. "What is going on here?" I ask. "Do you people speak to each other at all?" She leaves the room and returns to tell me that Jeff didn't order pain medication for me and he's gone into a c-section. "Rachel," I say, "I suggest you get him out of the c-section or find another doctor or nurse to write the order. This is a fucking hospital, right? Surely you can find someone to write a prescription and I know for a fact that most narcotics are safe during pregnancy." She leaves the room. Finally after 4 hours of suffering, I get a shot of morphine. It barely helps at all. Jeff comes back and tells me that he's going to order some additional tests (after 4 hours they asked for a urine sample, nothing else). It's about time. What doctor doesn't take blood immediately when you tell them you're pregnant and on chemo. Hello infection anyone!? Nurse Rachel tells me one of the ordered tests is for preeclampsia. I turn to Boris and lament that they are going to kill me. Preeclampsia?
I have to wait another 30 minutes for someone from the "i.v team" to come access my port. I totally understand that nurses on the maternity ward don't know anything about ports which is why I had wanted off the ward like 4 hours ago. My blood is taken and I'm given fluids. Jeff tells me that he's thinking I either have a kidney infection or might be passing a kidney stone and that I can no longer eat or drink anything. Not that I was chowing down or anything but I had lunch at 230, barfed it up and then some up, and was feeling weak and thirsty. Oh well. He also tells me that he's ordered an ultra-sound of my liver, kidney and gall bladder. Amazingly, even though I'm on the Labor and Delivery floor, there aren't any portable ultrasounds available so I have to go to the imaging center for my scans. Before I'm wheeled away, Dr. McAndrew comes to see me. I've never been happier to see her. "A real doctor!" I exclaim. "Dr. McAndrew, you have to help me," I cry. "No one cares that I'm in pain. They only want to monitor the baby and no one knows what they're doing." She assures me that Jeff is doing a good job but promises to get me more pain medication. She says that the results from the urine test are fine so no one is really sure what's going on. "You would have blood in your urine if you had a kidney stone," she explains, "and there's no sign of an infection. You're always rare and never an easy case," she says and smiles. "We're working on it. If the ultrasound doesn't reveal anything, we may want you to have a CT scan. Even though there is some risk to the baby, the risk is outweighed by something being wrong with you and we need to find out what it is." I'm still in so much pain that I agree to the scan if it's necessary. I also beg Dr. McAndrew to make them give me more morphine, which they do. I'm still in pain, but am no longer writhing around in agony, so I guess that's progress.
The good news as I inform Boris is that I am now totally at piece with my scheduled c-section. Initially when I got pregnant, my goal was to have a vaginal birth. I had watched The Business of Being Born and not only wanted a vaginal birth, I wanted to deliver at home, with a doula or midwife in my bathtub without any drugs. I'm serious. Ask Boris. But after 4 hours of the worst pain in my life, I'm 100% over the whole natural birth thing. I want to be hooked up to an epidural as soon as humanly possible. Pain free and civilized sounds damn good to me.
Rachel wheels in a wheelchair and I'm taken to the imaging center for my ultrasound. I'm freezing (it's crazy how warm hair keeps you and how cold chemo makes you) and nurses are wrapping me up in blankets as I'm pushed down the hall. It's very sweet. Even though I'm bald, they're asking if this is my first baby and are smiling because they think I'm in labor. I just look at Boris and roll my eyes. It's a nightmare. The ultrasound technician asks me a few questions and then starts the scan. He's running the machine over the top portion of the right side of my belly. Not at all where I'm in pain. Then he moves to the left side. "Are you going to look at where I'm actually in pain?" I ask. "I know what I'm doing, okay?" he says. "Absolutely. But I have no pain whatsoever on my left side, so just asking." Jesus. He asks where the pain is and does run the machine over the area before dismissing me. I go back up to my shitty room with the most uncomfortable bed on earth (the kind that breaks down - mommies - you know what I mean) and I wait some more. It's almost midnight and Jeff comes to the room to tell us that there's nothing out of the ordinary on the scans. He's waiting for a portable ultrasound and wants to take one last look at me and the baby and then he'll let me eat, give me more drugs and let me go to sleep. He says that all of my tests are normal. No signs of infection whatsoever and he doesn't think the CT scan is necessary. Scary that no one knows what's going on with me, but I'm relieved to not need the scan.
An hour later Jeff returns with the ultrasound. Miracle Warrior is moving around like a superstar. His foot is jammed up against the right side of my belly, right where I'm hurting most. Interesting, but highly unlikely that such a teeny tot is causing so much pain for so long. Everyone is at a loss, but I get Vicodin which actually relieves the pain, so I'm finally happy. Exhausted, starving, but not in pain. Rachel wheels me to my new room which has a bed for Boris (poor guy has been trying to sleep in a rocking chair) and orders us food. We meet our new nurse, Beverly, who tells me that the second I start to feel any pain, I should call her so she can bring me more drugs. Rachel assures her that she doesn't need to worry about me asking. Now that I'm not in agony and am not starving, Rachel and I talk about my pregnancy and my cancer and she's very sweet and caring. Boris and I eat, drink, I take Vicodin and we pass out at 300am. We get a few hours of sleep before the pain comes back and I have to call Beverly for more drugs. When she comes in she tells us that the doctors are changing shifts and they are going to discuss me at 800am. They'll determine whether I have more scans or go home a mystery.
At 730am, Miracle Warrior kicks the crap out of me and the pain is gone. Poof. Just like that. No pain whatsoever. Doctor Jeff comes to see me after the changing of the doctor guards and says that the full work up from my blood reveals absolutely nothing except for a potassium deficiency. "You were my most boring labs of the night," he says. "I can give you potassium pills or you can eat a banana." I tell him I've been potassium deficient for several weeks and I'll eat a banana and the next time I go in for hydration they'll give me potassium. I tell him that Miracle Warrior beat me up and now I don't hurt at all. "Fascinating," he says. Then he tells me that the doctors all agree (read he spoke to an actual doctor not a resident) that I can go home. Dr. McAndrew also comes by and agrees. She says that she's called Dr. Silverman and I'm to go straight to his office from the hospital. Done. She says that they're going to find someone who can flush out my port (I've been receiving fluids all night) and discharge me. A nurse enters the room and gives me my discharge instructions (all labor related). I'm to come back if I don't feel Miracle Warrior kick me 10 times in a 1 hour period (he kicks me 10 times every few minutes, so no problem there), start bleeding or a host of other totally irrelevant problems. She reminds me many times not to forget to go to Dr. Silverman's. Then she flushes my port and tells me we're free to leave. "Um, there's a giant needle in my arm," I tell her. "Aren't you going to take it out?" She says "that's your port, not a needle." OMFG. "I need to speak to someone who knows about ports, now." She tries to convince us that she knows about them and then has some sort of an epiphany, realizes I'm correct, and says that she can just pull the needle out - but there's no way I'm letting her near me. I tell Boris that we should just leave and go to Tower and have someone who knows what the hell they're doing take the needle out. That's what we do and hot nurse John is a dream after the nightmare of Cedars. He removes the needle and Boris and I go to see Dr. Silverman.
We're seen after a short wait and Miracle Warrior is a miraculous warrior who is doing great. He's actually big for his age. He's in the 66% for size and we couldn't be happier. Dr. Silverman assures me that the morphine and Vicodin didn't harm Miracle Warrior at all (he says there's very little I can do to really harm him at this point) and then we discuss my delivery. I tell him that I want to deliver at 38 weeks. He says that it's much better for me to deliver as soon as possible so that I can get on with my treatment. After my experience at Cedars, it's so shocking to hear a doctor (particularly a baby doctor) take me into account and want to do what's best for me. He says that statistically, Miracle Warrior's lungs will be fully developed at 37 weeks, and says that we should do the amnio then. If his lungs are fully mature, we'll deliver. He promises me that once his lungs are mature, there is no difference in delivering at 37 or 38 weeks and reiterates that it's better for me. He says I should come back in 4 weeks and wishes us a better and happy new year. "Things can't get worse," I say, "so it just has to better." Always a realist and never one to mince words, he says "well, it can get worse, but we're going to hope that it doesn't."
We are. We are. We are.
We go home. Miles is so happy to see us and we him. We eat lunch together and then we all nap. I don't wake up for 4 hours. I wake up to Miles yelling "hi!" and hear him toddling down the hallway. Later that evening as I'm filling up the tub for his bath, Miles pulls up my shirt and kisses my belly. Swear. He bathes, has his milk and then we snuggle before I put him to bed. After about 5 minutes of the most tender snugglage ever I ask him if he's ready for bed. "Noooo" he whispers. "Okay, monkey," I tell him. "You let me know when you're ready. We'll snuggle until you are." After a really long time in Miles minutes, he looks at me, smiles and says "bye bye." I kiss him a zillion times and put him in his crib.
Over the next few days I've experienced a few twinges that are similar to the pain that drove me to the hospital, but nothing as severe and nothing that lasts longer than a minute or two. Yet again, I'm a medical enigma. The mystery of Sharon continues.
Thursday, December 18, 2008
Womanizer
The week after round 5 is the worst yet. I think the cumulative effect of the poison has started to catch up with me. I'm so tired I just cry all the time. I don't like relaxing and don't like feeling lazy. Even though I know I'm neither relaxing nor being lazy, it's incredibly difficult for me to be so inactive. I barely exercise other than my 2 Pilates sessions per week (minus chemo week) and I sleep a lot. Boris is amazing as usual and lets me sleep in in the morning while he takes care of Miles. He usually stays at home until our nanny arrives. I should have shut my mouth about not being nauseous, because now I am. But only when I go to eat, so it could be worse. I could feel like throwing up all the time. But I don't. And I still manage to eat. But with the nausea, I want to eat like a pregnant person, not a cancer patient. Protein and vegetables are revolting. I want bread and pasta and Cheetos and Sprite (I really want Coke but not enough to drink caffeine). The nutritionist at Tower always comes to visit with me while I'm there and I tell her that I've been eating far more carbs than protein. She tells me it's fine to give into my cravings as long as I have protein with them. Proteins are must. "You just have to eat them," she insists. Ugh. And yuck.
My second day of hydration is brutal. Russell is my date (and has been for several of my hydration sessions). He's a reformed lawyer, too (that's how we met) turned talk show host/blogger (www.popsquire.com). He's perfectly content to compute for a few hours with me and not at all phased by the treatment center. We wait for an hour because all of the chairs are full. Annoying. I see Darcy who I haven't seen in a few weeks. She looks tiny and tired and has a thick wool cap on her bald head. I ask her how she's holding up. She gives the routine "I'm hanging in there" response that I give when I can't deal. I've noticed it's the most common answer that I hear the young people at Tower give. "It's really tough," she says. I know. I know. We chat for a few more minutes and then I'm told that she's about to leave and I can have her chair. I bring over my belongings but when Darcy goes to stand up she's so sick and weak that she sinks back into the chair and looks like she's about to cry. She slowly peels off her sweater and says she can't move. I leave. As I'm walking back to the waiting room I start to cry. I see Anne and she wants to know what's wrong. I tell her that I just saw Darcy. "She's going to be okay," Anne says. "I'm going to get her a snack. Please don't worry." I'm not sure how Doritos will help the situation, but there's nothing I can do. I tell Russell that sometimes I forget that I'm dealing with cancer and how sick people get from chemo. I've been so lucky. I try to get my good spot in the treatment center where I see and hear very little but when I can hear other patients describing their side effects and problems and when I see how sick they are, it's unbelievably sad and terrifying.
I'm exhausted when I get home. I play with Miles a few minutes and then have to nap. Boris comes home early because pre-cancer, I had bought tickets to see Kathy Griffin. Some friends and I go to see her every time she's here and even though I feel like shit, with Clay Aiken coming out and Britney's "comeback", I'm really looking forward to it. But when it comes time to actually get dressed and go, I'm so tired I don't know how I'm going to survive the night. Plus I'm still traumatized from seeing Darcy. I start crying to Boris that I just don't know how I can do this. I hate being so tired. He reminds me that I should sleep if I don't want to see Kathy and that I can do this. I can do anything. I go. The last few shows we've gone to we somehow end up sitting in front of drunk, white trash who are so not Kathy's demographic. They're loud and can't help but keep a running commentary of their thoughts and feelings on everything she says and are incapable of containing their alcohol in their cups. One year I turned around and asked them to be quiet and a woman with bleached, permed, trailer park hair kicked my chair and threatened me. Weird. This year though, we are surrounded by Kathy's peeps (women and gay men) and so I'm able to sleep through the entire show. It was the first time my friends saw me struggling and they repeatedly told me we should leave, but I assured them I was content to sleep and they should enjoy the show. They did.
The following week I meet with Dr. McAndrew. She's just returned from a national breast cancer conference and tells me there were numerous lectures on triple negative tumors. Though currently all of the studies involve metastatic disease, she is optimistic that those of us with triple negative cancer will soon have a preventative drug in our arsenal. I show her a study I found in a medical journal about a new drug called trastuzumab that doctors have been using in an adjuvant setting. It doesn't directly speak to triple negative cancers, but I ask her if I can take it. According to the study, it reduces recurrences and overall survival tremendously. She smiles and tells me that trastuzumab is Herceptin. Crap (and a little embarrassing, but that's part of why I love her madly because she willingly reads all the studies I bring her, doesn't belittle me for doing so, and doesn't make me feel stupid for asking if Herceptin may help a tumor that's not receptive to Herceptin).
We also spend a long time discussing the timing of my remaining treatment. I had recently spoken to the young woman Hilary Swank introduced me to (who is being treated at UCLA) and she told me that 17 weeks elapsed between her chemo regimens in part because each scan she had was ordered separately and she had to wait a few weeks for results before receiving the next scan. I am not a doctor, but thought it sounded absurd. I want to know how quickly I can have my scans and when I have them. I don't want to have unnecessary time gaps between treatments. Dr. McAndrew explains that while UCLA is an incredible facility with some of the best doctors in the field, they are primarily research doctors at a research institution and things work differently. There's a lot of bureaucracy. She assures me that I'll have all of my scans and results back within a few days. And I can have the scans during my second course of chemo so they won't impact the timing between treatments at all. It's also good news that I won't have to get the scans immediately after I deliver. I can have my 2 weeks to just be a new mom and not a cancer patient. She does say that the results from the scans coupled with the pathology from the mastectomy (scheduled for early June) will determine the timing of my radiation. If everything is clear, I may have more time between chemo and radiation which is preferable for my reconstruction. If not, I'm not sure what happens to me. I'm too scared to ask.
At the beginning of week 2 post-chemo, I start to feel much better. My energy is back and the nausea is gone (phew). Amazingly, I have no mouth sores (I'm hoping I didn't just curse myself) so all things considered, life is pretty good. When I'm not at doctors' appointments, I'm able to enjoy my time with Miles who gets more amazing every day. His vocabulary is (in my unbiased opinion as his mother) phenomenal (he has well over 60 words which I think is impressive for a 15 month old boy) and it's so much fun talking with him. He points out everything in his world so we spend hours running through the park saying "bird, tree, bark, bow wow, swing, dirt, shovel," and naming his various body parts. He has also fallen in love with his friend Abby and so we spend a lot of time pining away for her. He woke up this weekend at 620am, said "Abby, Abby, Abby," then went back to bed. Each night before we go to sleep, Boris and I tell each other how much we love the other and then we talk about how much we worship Miles. I share with Boris all of the hilarious things he did that day. Much to Boris' horror, my most recent story involved Miles' love of Britney. We were listening to Womanizer in the car and as soon as it ended, I hear Miles say "more." I play the song again. It ended and Miles says "more, more." I ask him if we can listen to the next song but no....he likes Womanizer and apparently wants to listen to it over and over. A man after my own heart. Boris, Miles and I were in the car the next day listening to the song and each time it ended, Miles asked for more and Boris looked suicidal. Good times. Miles now says "Britney" and a huge grin spreads across his little face each time he hears the chorus.
My second day of hydration is brutal. Russell is my date (and has been for several of my hydration sessions). He's a reformed lawyer, too (that's how we met) turned talk show host/blogger (www.popsquire.com). He's perfectly content to compute for a few hours with me and not at all phased by the treatment center. We wait for an hour because all of the chairs are full. Annoying. I see Darcy who I haven't seen in a few weeks. She looks tiny and tired and has a thick wool cap on her bald head. I ask her how she's holding up. She gives the routine "I'm hanging in there" response that I give when I can't deal. I've noticed it's the most common answer that I hear the young people at Tower give. "It's really tough," she says. I know. I know. We chat for a few more minutes and then I'm told that she's about to leave and I can have her chair. I bring over my belongings but when Darcy goes to stand up she's so sick and weak that she sinks back into the chair and looks like she's about to cry. She slowly peels off her sweater and says she can't move. I leave. As I'm walking back to the waiting room I start to cry. I see Anne and she wants to know what's wrong. I tell her that I just saw Darcy. "She's going to be okay," Anne says. "I'm going to get her a snack. Please don't worry." I'm not sure how Doritos will help the situation, but there's nothing I can do. I tell Russell that sometimes I forget that I'm dealing with cancer and how sick people get from chemo. I've been so lucky. I try to get my good spot in the treatment center where I see and hear very little but when I can hear other patients describing their side effects and problems and when I see how sick they are, it's unbelievably sad and terrifying.
I'm exhausted when I get home. I play with Miles a few minutes and then have to nap. Boris comes home early because pre-cancer, I had bought tickets to see Kathy Griffin. Some friends and I go to see her every time she's here and even though I feel like shit, with Clay Aiken coming out and Britney's "comeback", I'm really looking forward to it. But when it comes time to actually get dressed and go, I'm so tired I don't know how I'm going to survive the night. Plus I'm still traumatized from seeing Darcy. I start crying to Boris that I just don't know how I can do this. I hate being so tired. He reminds me that I should sleep if I don't want to see Kathy and that I can do this. I can do anything. I go. The last few shows we've gone to we somehow end up sitting in front of drunk, white trash who are so not Kathy's demographic. They're loud and can't help but keep a running commentary of their thoughts and feelings on everything she says and are incapable of containing their alcohol in their cups. One year I turned around and asked them to be quiet and a woman with bleached, permed, trailer park hair kicked my chair and threatened me. Weird. This year though, we are surrounded by Kathy's peeps (women and gay men) and so I'm able to sleep through the entire show. It was the first time my friends saw me struggling and they repeatedly told me we should leave, but I assured them I was content to sleep and they should enjoy the show. They did.
The following week I meet with Dr. McAndrew. She's just returned from a national breast cancer conference and tells me there were numerous lectures on triple negative tumors. Though currently all of the studies involve metastatic disease, she is optimistic that those of us with triple negative cancer will soon have a preventative drug in our arsenal. I show her a study I found in a medical journal about a new drug called trastuzumab that doctors have been using in an adjuvant setting. It doesn't directly speak to triple negative cancers, but I ask her if I can take it. According to the study, it reduces recurrences and overall survival tremendously. She smiles and tells me that trastuzumab is Herceptin. Crap (and a little embarrassing, but that's part of why I love her madly because she willingly reads all the studies I bring her, doesn't belittle me for doing so, and doesn't make me feel stupid for asking if Herceptin may help a tumor that's not receptive to Herceptin).
We also spend a long time discussing the timing of my remaining treatment. I had recently spoken to the young woman Hilary Swank introduced me to (who is being treated at UCLA) and she told me that 17 weeks elapsed between her chemo regimens in part because each scan she had was ordered separately and she had to wait a few weeks for results before receiving the next scan. I am not a doctor, but thought it sounded absurd. I want to know how quickly I can have my scans and when I have them. I don't want to have unnecessary time gaps between treatments. Dr. McAndrew explains that while UCLA is an incredible facility with some of the best doctors in the field, they are primarily research doctors at a research institution and things work differently. There's a lot of bureaucracy. She assures me that I'll have all of my scans and results back within a few days. And I can have the scans during my second course of chemo so they won't impact the timing between treatments at all. It's also good news that I won't have to get the scans immediately after I deliver. I can have my 2 weeks to just be a new mom and not a cancer patient. She does say that the results from the scans coupled with the pathology from the mastectomy (scheduled for early June) will determine the timing of my radiation. If everything is clear, I may have more time between chemo and radiation which is preferable for my reconstruction. If not, I'm not sure what happens to me. I'm too scared to ask.
At the beginning of week 2 post-chemo, I start to feel much better. My energy is back and the nausea is gone (phew). Amazingly, I have no mouth sores (I'm hoping I didn't just curse myself) so all things considered, life is pretty good. When I'm not at doctors' appointments, I'm able to enjoy my time with Miles who gets more amazing every day. His vocabulary is (in my unbiased opinion as his mother) phenomenal (he has well over 60 words which I think is impressive for a 15 month old boy) and it's so much fun talking with him. He points out everything in his world so we spend hours running through the park saying "bird, tree, bark, bow wow, swing, dirt, shovel," and naming his various body parts. He has also fallen in love with his friend Abby and so we spend a lot of time pining away for her. He woke up this weekend at 620am, said "Abby, Abby, Abby," then went back to bed. Each night before we go to sleep, Boris and I tell each other how much we love the other and then we talk about how much we worship Miles. I share with Boris all of the hilarious things he did that day. Much to Boris' horror, my most recent story involved Miles' love of Britney. We were listening to Womanizer in the car and as soon as it ended, I hear Miles say "more." I play the song again. It ended and Miles says "more, more." I ask him if we can listen to the next song but no....he likes Womanizer and apparently wants to listen to it over and over. A man after my own heart. Boris, Miles and I were in the car the next day listening to the song and each time it ended, Miles asked for more and Boris looked suicidal. Good times. Miles now says "Britney" and a huge grin spreads across his little face each time he hears the chorus.
Tuesday, December 9, 2008
Chemo Round Five
My wife and her soon to be husband take me to round 5 of chemo. I've been getting progressively more tired so I ask Boris to spend the following day with me at home instead of coming to chemo. The waiting room is packed and after waiting 30 minutes, Anne asks if I will get started in a private room and she'll move me as soon as a chair opens up. I sigh, but want to get this over with, so I agree. Anne asks how I've been feeling as she takes my blood. Unfortunately, I caught a cold from Miles that morning and feel like death. I can barely breathe and am nervous that the doctors won't let me get this round of chemo. Anne says that unless I have a fever or other infection, it's not a problem. "Just get better by next week," she says. Um, okay.
I tell Anne that in addition to my normal side effects, I've had a ringing in my ear for the past 1.5 weeks. Initially, I didn't think anything of it. But then I was speaking to a pregnant with cancer friend of mine who has finished treatment and she was telling me that she recently freaked out because she had some persistent pain in her elbow. Although her husband thought she was crazy, she was convinced she had elbow cancer and insisted on getting an x-ray (came back normal - phew). I didn't think she was crazy but we laughed (so sick, I know) about elbow cancer since we don't even think that exists. I started telling her that I might have ear cancer and described the ringing in my ear, but then it dawned on me that it could be brain cancer and suddenly didn't think it was so funny. So, I tell Anne about the ringing and my possible brain cancer. "I'm so glad that you're such a good advocate for yourself," Anne says "but you don't have brain cancer." "How do you know?" I ask. Anne asks if I've researched brain cancer. Of course I have. "Of course you have," she laughs. "In your research did you find ringing in one ear a symptom?" Um, no. I found signs like persistent headaches, blurry vision, loss of balance, dizziness, but no ear ringing. But...you never know. It could be a rare side effect and I am rare. Nitasha's fiance is an ER doctor so he asks if he can look in my ear. He doesn't see anything except for some wax (which I'm pretty sure he called by its medical name "goober.").
I also ask Anne a ton of questions about my next cycle of chemo and my side effects and ways to ward them off. I tell her that I've heard the steroid causes horrific bone pain and ask if it's possible not to get it. "What did Dr. McAndrew say?" she asks. I tell her that Dr. McAndrew says I'll need it because the risk of infection is so high. Anne wants to know why I'm asking again, but I tell her that I ask everyone I can about everything I can because I want as much information as I can get. Yes I chose Dr. McAndrew because I was most comfortable placing my life in her hands, but I still want second, third, fourth and fifth opinions. Anne tells me that a Percocet or Darvocet will help with the pain. I ask her if medical marijuana is more effective. It's more natural so I'd rather be high on weed than Percocet (I think. I'm not sure which is more dangerous with a newborn). Unfortunately, she tells me that marijuana is great if I'm nauseous, but won't help with bone pain. Oh well.
Anne returns with my blood results and my white counts are even higher than usual due to my cold, but I get the green light to start my infusion. I don't wait too long before I'm told I can move to a chair, but after packing up all my belongings and heading towards the chair, someone else sits down in it. My instinct is to play the cancer card to get the chair, but then I remember that they have cancer, too, so that's not going to work. I head back to the private room. Anne tells me that she almost played the pregnant with cancer card to get me another chair, but refrained. I wait about an hour and then settle in to my chair.
Angela comes by to see how I'm doing. She tells me how wonderful I look (but of course) and asks if I feel beautiful. I'm caught off guard because it's the weirdest question I've been asked so far. Do I feel beautiful? Hmmm. I'm 7 months pregnant, bald, have acne and 1 chin hair. So, I have to vote no. But instead I smile and say "not so much, but thanks." Angela asks if I want antibiotics for my cold which I definitely don't. I thought I had made it clear that I don't want to take any additional medications, not even a Tylenol for a raging headache, but I guess I wasn't so clear. I'll save the pill popping for after Miracle Warrior's arrival. Apparently, I'm going to need it.
After 2 hours, I already feel like shit. Cold and breathing problems aside, I'm groggy and realize I feel nauseous. The smell of the hand soap at Tower is making me sick. Dr. McAndrew stops by to see how I'm doing. We discuss my cold and then I tell her about the ringing in my ear and possible brain cancer. She places my face in her hands, smiles, and tells me how relieved I'll be when I can have my scans. She assures me that the ear ringing is not a side effect of my chemo and it's highly unlikely it's a sign of brain cancer. "Please concentrate on feeling good and having a healthy baby," she says. "You'll have your scans as soon as you deliver, but for now, let's get through chemo and having a baby." I ask her again about my delivery date and whether I can deliver at 38 weeks instead of 37. That will mean I'll have 10 weeks in between my chemo regimens. "Do you think I'm risking my life by taking a 10 week break between treatments?" I ask. "I really don't," she answers. Of course there is no data whatsoever on what the delay between treatments means for me, but I trust her and like the answer, so I'm going with it. I'm going to start looking into possible birthdays when I get home. Maybe there's a lucky number or day that means health or life or something that I can choose. And I think I prefer Aquarius over Pisces, although I need to do more research.
I spend the remaining hours shopping online, my favorite passtime. Although I have a trillion new books on fighting cancer, raising fabulous children and child development, I can't bring myself to read any of them. I just collect. With my taste in music being what it is, Amazon.com thinks I'm a 12 year old girl with cancer and 14 children (but apparently I'm quite old because a friend recently reprimanded me for buying Cd's instead of buying albums on iTunes and Boris forbade me from buying Britney's new album on Amazon because the "new items" Amazon suggests for him are "humiliating.").
The treatment finally ends and I get to go home to Miles. He's still napping when I get home. I'm thrilled to be home when he wakes up so I can get him from his crib and get in some good snugglage before he's off and running. He's getting more cuddly in his old age and finally prefers me over most people (it's about time!). I've been complaining his whole little life that he really could care less whether I'm around or not and would enviously listen to moms I know talk about separation anxiety. While we still don't have any separation or stranger anxiety (not complaining), Miles does occasionally seek Boris and I out and doesn't spend all of his time with complete strangers (although this weekend he literally traversed an entire soccer field while Boris waited to see what his "comfort level" was with distance before I insisted that Boris follow him because he has no fear and didn't look back once as he ran farther and farther away and ultimately joined a group of 20something soccer players and their dogs). Now he'll run up to me yelling mama and throw himself into my arms. It's the best thing ever.
5 rounds down, 1 more to go.
I tell Anne that in addition to my normal side effects, I've had a ringing in my ear for the past 1.5 weeks. Initially, I didn't think anything of it. But then I was speaking to a pregnant with cancer friend of mine who has finished treatment and she was telling me that she recently freaked out because she had some persistent pain in her elbow. Although her husband thought she was crazy, she was convinced she had elbow cancer and insisted on getting an x-ray (came back normal - phew). I didn't think she was crazy but we laughed (so sick, I know) about elbow cancer since we don't even think that exists. I started telling her that I might have ear cancer and described the ringing in my ear, but then it dawned on me that it could be brain cancer and suddenly didn't think it was so funny. So, I tell Anne about the ringing and my possible brain cancer. "I'm so glad that you're such a good advocate for yourself," Anne says "but you don't have brain cancer." "How do you know?" I ask. Anne asks if I've researched brain cancer. Of course I have. "Of course you have," she laughs. "In your research did you find ringing in one ear a symptom?" Um, no. I found signs like persistent headaches, blurry vision, loss of balance, dizziness, but no ear ringing. But...you never know. It could be a rare side effect and I am rare. Nitasha's fiance is an ER doctor so he asks if he can look in my ear. He doesn't see anything except for some wax (which I'm pretty sure he called by its medical name "goober.").
I also ask Anne a ton of questions about my next cycle of chemo and my side effects and ways to ward them off. I tell her that I've heard the steroid causes horrific bone pain and ask if it's possible not to get it. "What did Dr. McAndrew say?" she asks. I tell her that Dr. McAndrew says I'll need it because the risk of infection is so high. Anne wants to know why I'm asking again, but I tell her that I ask everyone I can about everything I can because I want as much information as I can get. Yes I chose Dr. McAndrew because I was most comfortable placing my life in her hands, but I still want second, third, fourth and fifth opinions. Anne tells me that a Percocet or Darvocet will help with the pain. I ask her if medical marijuana is more effective. It's more natural so I'd rather be high on weed than Percocet (I think. I'm not sure which is more dangerous with a newborn). Unfortunately, she tells me that marijuana is great if I'm nauseous, but won't help with bone pain. Oh well.
Anne returns with my blood results and my white counts are even higher than usual due to my cold, but I get the green light to start my infusion. I don't wait too long before I'm told I can move to a chair, but after packing up all my belongings and heading towards the chair, someone else sits down in it. My instinct is to play the cancer card to get the chair, but then I remember that they have cancer, too, so that's not going to work. I head back to the private room. Anne tells me that she almost played the pregnant with cancer card to get me another chair, but refrained. I wait about an hour and then settle in to my chair.
Angela comes by to see how I'm doing. She tells me how wonderful I look (but of course) and asks if I feel beautiful. I'm caught off guard because it's the weirdest question I've been asked so far. Do I feel beautiful? Hmmm. I'm 7 months pregnant, bald, have acne and 1 chin hair. So, I have to vote no. But instead I smile and say "not so much, but thanks." Angela asks if I want antibiotics for my cold which I definitely don't. I thought I had made it clear that I don't want to take any additional medications, not even a Tylenol for a raging headache, but I guess I wasn't so clear. I'll save the pill popping for after Miracle Warrior's arrival. Apparently, I'm going to need it.
After 2 hours, I already feel like shit. Cold and breathing problems aside, I'm groggy and realize I feel nauseous. The smell of the hand soap at Tower is making me sick. Dr. McAndrew stops by to see how I'm doing. We discuss my cold and then I tell her about the ringing in my ear and possible brain cancer. She places my face in her hands, smiles, and tells me how relieved I'll be when I can have my scans. She assures me that the ear ringing is not a side effect of my chemo and it's highly unlikely it's a sign of brain cancer. "Please concentrate on feeling good and having a healthy baby," she says. "You'll have your scans as soon as you deliver, but for now, let's get through chemo and having a baby." I ask her again about my delivery date and whether I can deliver at 38 weeks instead of 37. That will mean I'll have 10 weeks in between my chemo regimens. "Do you think I'm risking my life by taking a 10 week break between treatments?" I ask. "I really don't," she answers. Of course there is no data whatsoever on what the delay between treatments means for me, but I trust her and like the answer, so I'm going with it. I'm going to start looking into possible birthdays when I get home. Maybe there's a lucky number or day that means health or life or something that I can choose. And I think I prefer Aquarius over Pisces, although I need to do more research.
I spend the remaining hours shopping online, my favorite passtime. Although I have a trillion new books on fighting cancer, raising fabulous children and child development, I can't bring myself to read any of them. I just collect. With my taste in music being what it is, Amazon.com thinks I'm a 12 year old girl with cancer and 14 children (but apparently I'm quite old because a friend recently reprimanded me for buying Cd's instead of buying albums on iTunes and Boris forbade me from buying Britney's new album on Amazon because the "new items" Amazon suggests for him are "humiliating.").
The treatment finally ends and I get to go home to Miles. He's still napping when I get home. I'm thrilled to be home when he wakes up so I can get him from his crib and get in some good snugglage before he's off and running. He's getting more cuddly in his old age and finally prefers me over most people (it's about time!). I've been complaining his whole little life that he really could care less whether I'm around or not and would enviously listen to moms I know talk about separation anxiety. While we still don't have any separation or stranger anxiety (not complaining), Miles does occasionally seek Boris and I out and doesn't spend all of his time with complete strangers (although this weekend he literally traversed an entire soccer field while Boris waited to see what his "comfort level" was with distance before I insisted that Boris follow him because he has no fear and didn't look back once as he ran farther and farther away and ultimately joined a group of 20something soccer players and their dogs). Now he'll run up to me yelling mama and throw himself into my arms. It's the best thing ever.
5 rounds down, 1 more to go.
Sunday, December 7, 2008
Two Weeks in Review
Hydration the following two days after chemo is the same as usual. My side effects are getting a little worse, but still tolerable. I still have mouth sores, incredibly painful indigestion and my fatigue is ridiculous. Sometimes I'm so tired that I actually can't move even when I just want to get off the couch and go to bed. It's a little scary. The second day of hydration, I make plans to meet another young woman, Katy, being treated for breast cancer. She was one of the non-pregnant cancer patients I wasn't going to meet, but then I learned that she was using a plastic surgeon (Dr. Slate) I had ruled out due to radiation (more on this in another post) and decided to call her. I am so glad I did. We have all of the same doctors, the same acupuncturist, both take power yoga with Vinny (or I should say took power yoga with Vinny since neither of us are allowed to do yoga due to lymphedema), are both struggling with lymphedema and both can't believe that this is fucking happening to us. It's so good to put a name to the face. I had seen her before at Tower, but she prefers the side of the treatment center that I don't like, so we had never spoken. She's particular too and I listen to her sweetly (but firmly) tell the nurse that hot nurse John is going to have to come to the chair she wants to sit in. She's there for her last round of chemo. I'm jealous. We swap complaints, discuss side effects and agree to get together after she's recovered from this last round. Before I leave, she takes me into the bathroom and shows me her reconstructed breasts. She still has expanders in and no nipples, but the girls look damn good.
From there I go to meet a group of women who call themselves "Slate Mates," (I am not making this up). They are all breast cancer survivors or BRCA gene carriers who removed their breasts prophylactically and used Dr. Slate for their reconstruction. If you're going to have expanders and implants, he's the man. Period. I had called another non-pregnant breast cancer patient, also named Katy (I'll call them Katy 1 and Katy 2), when I learned that she also needed radiation and was using Dr. Slate. She told me to come meet the Slate Mates who were lunching at Urth Caffe while I was hydrating. When I get to Urth Caffe, Katy 1 informs me that I just missed the big outing to the bathroom to check out everyone's boobs but she offers to show me hers. I pass and tell her we'll make a later date for a viewing. Katy 1 finished chemo 3 months ago and had just finished her last round of radiation earlier that morning. She is elated and beautiful and dawning her newly sprouted hair. It's come back gray (she's the second person I know whose hair came back sans color). I tell her that her hair looks amazing (it does) and my friend who was with me tells her that women would pay a lot of money for her hair cut. "I paid a lot of money for this hair cut," Katy 1 says. While I have never wanted short hair because I don't think I have the face for it - now I can't wait. I'm so envious and ready for my boy hair! I'm not even finished with my second cycle of chemo until the end of May so I have a long time to go. Boo.
I have my blood draw and appointment with Dr. McAndrew a few days later. While waiting at Tower, I see a partner I used to work with at my law firm. I go to say hello. He has the most amazing talent for remembering people. I think he's a little thrown off by my new look though so I give him my name. He introduces me to his wife who is receiving treatment and tells her that I was a "promising young lawyer who left the law to go into real estate with her family." "The Fiedlers," he says several times. His wife looks at me and says that surely I'm not here for treatment because I'm way too young. I agree, but sadly tell her I am being treated for breast cancer. And I'm pregnant. "Well," she says, "I had breast cancer when I was 39. I've never had it again. They can cure breast cancer. I've had other cancers since then, but never breast cancer." She's probably in her 60s or 70s now and was most recently treated for lung cancer and sarcoma. I don't want to tell her that I'm pretty sure her "other" cancers were breast cancer recurrences since breast cancer doesn't come back in the breasts. It prefers to come back in deadly places like the lungs, brain, bones and liver. But...she's alive so what do I know. She's in great spirits and looks wonderful, especially considering that she has a ton of hair and was apparently bald 3 months earlier. A random man waiting in the room interrupts our conversation to tell me that his wife was treated for cervical cancer while pregnant with their now perfectly healthy 34 year old son. And she's still alive, too.
After waiting an hour (patiently), I see Dr. McAndrew. We go through all of my side effects and she tells me again how pleased she is with how well I'm tolerating treatment. I know it could be much worse. I show her my latest and greatest issue which is dark patches of extremely dry skin on the protrusion points in my feet, ankles and right knee. "That's very rare," she says. I swear she said that (Cass was there and she can testify). Of course. Apparently it will go away after treatment, although the patches may remain discolored for years. Good times. Then Dr. McAndrew leans her head back in her chair and waits for me to begin the onslaught of questions. I do. I have a ton of questions about my next cycle of chemo. I've been speaking to women about their side effects and am terrified. First, they've all gained weight. A lot of it. One woman gained 20 pounds. It's apparently from a steroid they give you to boost your white blood counts. Dr. McAndrew gives me a look that kindof says, "really, you're pregnant with stage III cancer and worried about gaining weight?" but goes on to explain why the steroid is necessary (incredibly high risk of infection otherwise). And yes, I'm pregnant with stage III breast cancer and am afraid of gaining weight. I mean, if I'm going to have cancer and be on chemo when I'm not pregnant, then I'd like to wither away to an emaciated 90 pounds. You know, I could be small the way Boris defines it. Gaining weight postpartum is just fucking rude. I ask her how on earth the plastic surgeons will know where to put my new, small boobs if I'm twice my normal size. I also asked Dr. Dao during my last acupuncture treatment if he'll be able to help with weight gain and other side effects after I deliver. He tells me that I'm a really good planner but goes on to say that he used to plan and now he prefers to "live in the moment and cherish every precious moment of life." I asked him if he's ever gone through chemo. He hasn't. "I was just wondering if you cherished your time being hooked up to an i.v. for 5 hours having poison dripped in to your body." That was the end of our conversation.
Back to Dr. McAndrew: Second, they've all experienced neuropathy. Dr. McAndrew says that I will almost certainly experience neuropathy in my hands and feet. The level of pain and duration differs for everyone. Some people experience it for years. Lastly, they've all experienced excruciating bone pain. One woman described it as horrific pain coursing through your veins and bones. Nice. Dr. McAndrew explains that that's also a result of the steroid but again tells me it's necessary. Normally I'd say shoot me, but since I'm doing all of this to stay alive, that seems inappropriate. Instead, I just tell her I'm so sad and afraid.
Our meeting isn't all bad news. We discuss Miracle Warrior and how miraculous he is. In my most recent appointment with Dr. Silverman, Dr. Silverman confirmed that his growth leaves nothing to worry about. Everything looks perfect. So perfect that I don't have to go back for another ultrasound for 6 weeks (not that I don't love seeing Miracle as often as possible, but it means Dr. Silverman truly isn't worried). Plus, I see Dr. Ottavi almost every 2 weeks, so I get to check up on him in the interim. We discuss my birth. My last round of this cycle of chemo is scheduled for December 30. I will be 32 weeks pregnant. I have to wait at least 4 weeks before delivering to ensure that my white blood count, and Miracle Warrior's, are normal. I tell Dr. McAndrew that I really don't want to deliver at 36 weeks and ask if I'm putting my life at risk by waiting another week. She doesn't think so. I'm going to try to push it back to 38 weeks the next time I meet with her. How much difference can 1 week make for me? She tells me that I'll have to wait 2 weeks after giving birth before starting the second cycle of chemo. 2 weeks. That's it. That's fucking it. While I start to tear up, she gives me news that makes me cry for the next few days. She says that I can breastfeed Miracle Warrior during those 2 weeks. She assures me that the chemo will be out of my system long before I deliver (and I confirm this with a doctor who literally wrote the book on drugs and breastfeeding). I am elated with the unexpected news and cry every time I think about it.
I leave Tower feeling really happy and positive. My baby is healthy, I can breastfeed him for 2 whole weeks and for the most part, I feel okay (under the circumstances). A good friend and my Aunt both tell me that they're going to be raising money for breast cancer and want to know if there's an organization I would like them to support. I go online to look for organizations that specifically provide money for research on triple negative breast cancer. I don't feel so happy and positive anymore. The only organizations I can find were created in honor of young women who died tragically young. All of the articles I read discuss how women with triple negative tumors are far more likely to die from the disease and have recurrences. Not that this news is new, but fuck. I become hysterical. I show Boris the website for the Triple Negative Breast Cancer Foundation and the picture of the 37 year old mother of a 2 year old who died 2 years after being diagnosed. "You are not going to be her," he tells me. "How do you know?" I ask him. "I know. I know. And it's what I have to believe. You are not going to be her," he repeats. He also says that foundations aren't interesting unless someone has died and insists that I stop looking online because I'm not going to find anything good. I do, but still cry myself to sleep.
Thankfully, I have breakfast with the 2 Katys in the morning. Katy 1 has finished treatment and Katy 2 has finished chemo and is about to start radiation shortly. It's like we've been good friends forever and we'd be friends even without cancer (although that certainly creates an instant bond). For fun (in our world), we exchange driver's licenses and can't believe how different (and younger) we all look pre-cancer. We compare scars from our surgeries and our ports. I tell them that I'm so tired and my mouth sores are the worst thing ever but then correct myself to say they just suck. Katy 1 insists that they are really are the worst thing ever. Actually, she says that every side effect is the worst thing ever. She's so my people. They look at me in shock when I tell them I haven't thrown up once and can't believe I can make it to pilates twice a week. "I'm exhausted just from walking up the stairs to the restaurant," Katy 2 says. She goes on to say that she just can't take it anymore. "Sharon, I'm sorry to say this in front of you because you still have so much treatment left, but I can't take it. I'm having a breakdown. Honestly, I just can't take it. Aren't you afraid of a recurrence?" she asks. "I can't go through this again." I am terrified of a recurrence and don't understand how can I possibly be monitored closely enough. Plus, I have zero control over the situation which I hate. Katy 1 tells us both that we can go through this again should we have to. "What choice do we have?" she says. "Look how strong we are," she continues. The time flies by and before I know it, we all have to leave for various doctor's appointments. We were all invited to the Bosom Buddies breakfast at Neimans and will see each other there in a few days.
I pull up to Neimans at 9am. The store isn't even open yet but there's a volunteer at the entrance who asks me if I'm here for the breakfast. I am. She tells me where Mariposa is but I'm already heading towards the escalator (as if I don't know where Mariposa is!). I see Katy 2 right away and she introduces me to 2 other breast cancer survivors - 1 who has been cancer free for 2 years and 1 who has 2 more rounds of radiation left and then she's done with treatment. Her name is Lucy and she also used Dr. Slate for her reconstruction. I'll have to see her tatas later, but she looks amazing. As we head towards a table, I hear a few women whispering "oh my god she's pregnant," as I walk by. It's really nice to be pitied even by women who have cancer. I ignore them and Lucy and I start chatting. I'm eyeing her unbelievable eyelashes and fabulous hair. She mentions that all of the eyelashes on her left eye fell out during her second to last chemo treatment. I just stare at her, confused. She tells me that she has an amazing eyelash woman who can give me the best lashes ever should mine fall out. So now I have to ask if her hair is real or not. It's not. We have the same wig maker. It's so real I can't believe it. Neither can she. She just assumed I didn't lose my hair because I was pregnant. It's hard to see how real the wig looks on your own head but on someone else, it's pretty incredible.
As we dine on popovers and eggs, Neimans' employees show us how to put on fake eyelashes and tie scarves. It's pretty amusing. And then one of the Bosom Buddies gets up to speak about the event and Tower Hematology and how lucky we all are to be in such good hands. She looks familiar to me and I realize that she was my 10th grade English teacher. I cry as she tells us that the original organizer of the event lost her battle to cancer a year ago. I approach her later and she looks at me and says "please tell me I'm not seeing one of my students here." "You are," I tell her. She's an 8 year breast cancer survivor and it's really nice reconnecting with her. We have been in touch since and she's going to be my Bosom Buddy. In her email to me she wrote "You have probably heard this sentiment, but it is worth repeating. As a friend and breast cancer survivor said to me when I was first diagnosed, this is a club none of us ever wanted to join, but it is truly an amazing sisterhood. I'm sorry you ever had to join, and especially so young, but you have many "sisters" who are here for you." I cry.
I have 3 more days before round 5 of chemo. My last appointment of the week is with a new lymphedema specialist (who my English teacher also sees). My left arm isn't visibly swollen, but it feels heavy and I can tell there's some swelling. The physical therapy office is in the south bay which is a schlep. The specialist is warm and motherly and quickly gets down to business. She measures both of my arms and tells me that there's a 1/2 inch difference in size in a few places in my upper arm. Great. She tells me that the compression garment (sleeve) I've been wearing is insufficient and orders me a new one. I tell her I rarely wear my sleeve because I thought it was better not to restrict the flow of any fluid. Wrong. If there's any difference in size, she says the sleeve is a must. "Will I have to wear it for the rest of my life?" I ask. "Why? Is it uncomfortable?" she wants to know. It's not uncomfortable, it's just ugly and who would want to wear it forever? She doesn't tell me I won't have to wear it forever. She just says we should concentrate on minimizing the swelling.
She begins a 45 minute "drainage massage" that's relaxing, but not really a massage. The lymph nodes are just under the skin, so the pressure is virtually non-existent. I ask her if I can still get normal massages (which I love). I can't. Fuck. Is there anything I can do? I tell her that I normally walk on the treadmill and do power yoga for exercise. She says "well you can definitely walk as long as you don't work up a sweat, and yoga is great because it's stretching and breathing." Who takes a leisure walk on a treadmill? And I explain to her that I don't breath and stretch in yoga, I sweat my ass off and do 100 push ups. "Oh no. That's not something we recommend." Fuck. I've taken a yoga class before where all we did was breath and stretch and it wasn't relaxing. It was frustrating and annoying and I was crawling out of my skin wondering when we were going to actually do something. I ask her if she's aware that women should do cardiovascular exercise to prevent cancer. Do I have to chose between cancer and looking like the elephant woman? I might.
She teaches me a self massage that I really can't imagine does anything, but I'm to do it twice a day (and I have been doing it religiously, but see no difference whatsoever). And, she also is ordering me a nighttime sleeve that looks like an oversized oven mit that goes from my knuckles to my armpit. Just in case sleeping isn't already uncomfortable enough. That sleeve is forever, too. I'm just going to believe, regardless of what anyone tells me, that once I'm not pregnant and not on chemo and not swollen all the time, that this is going away. It has to. I can't deal with compression garments for the rest of my life (as long or short as that my be) and a life with no activity. At least the kind of activity I like.
And on that happy note I have 2 appointment free days to spend with my boys before chemo round 5.
From there I go to meet a group of women who call themselves "Slate Mates," (I am not making this up). They are all breast cancer survivors or BRCA gene carriers who removed their breasts prophylactically and used Dr. Slate for their reconstruction. If you're going to have expanders and implants, he's the man. Period. I had called another non-pregnant breast cancer patient, also named Katy (I'll call them Katy 1 and Katy 2), when I learned that she also needed radiation and was using Dr. Slate. She told me to come meet the Slate Mates who were lunching at Urth Caffe while I was hydrating. When I get to Urth Caffe, Katy 1 informs me that I just missed the big outing to the bathroom to check out everyone's boobs but she offers to show me hers. I pass and tell her we'll make a later date for a viewing. Katy 1 finished chemo 3 months ago and had just finished her last round of radiation earlier that morning. She is elated and beautiful and dawning her newly sprouted hair. It's come back gray (she's the second person I know whose hair came back sans color). I tell her that her hair looks amazing (it does) and my friend who was with me tells her that women would pay a lot of money for her hair cut. "I paid a lot of money for this hair cut," Katy 1 says. While I have never wanted short hair because I don't think I have the face for it - now I can't wait. I'm so envious and ready for my boy hair! I'm not even finished with my second cycle of chemo until the end of May so I have a long time to go. Boo.
I have my blood draw and appointment with Dr. McAndrew a few days later. While waiting at Tower, I see a partner I used to work with at my law firm. I go to say hello. He has the most amazing talent for remembering people. I think he's a little thrown off by my new look though so I give him my name. He introduces me to his wife who is receiving treatment and tells her that I was a "promising young lawyer who left the law to go into real estate with her family." "The Fiedlers," he says several times. His wife looks at me and says that surely I'm not here for treatment because I'm way too young. I agree, but sadly tell her I am being treated for breast cancer. And I'm pregnant. "Well," she says, "I had breast cancer when I was 39. I've never had it again. They can cure breast cancer. I've had other cancers since then, but never breast cancer." She's probably in her 60s or 70s now and was most recently treated for lung cancer and sarcoma. I don't want to tell her that I'm pretty sure her "other" cancers were breast cancer recurrences since breast cancer doesn't come back in the breasts. It prefers to come back in deadly places like the lungs, brain, bones and liver. But...she's alive so what do I know. She's in great spirits and looks wonderful, especially considering that she has a ton of hair and was apparently bald 3 months earlier. A random man waiting in the room interrupts our conversation to tell me that his wife was treated for cervical cancer while pregnant with their now perfectly healthy 34 year old son. And she's still alive, too.
After waiting an hour (patiently), I see Dr. McAndrew. We go through all of my side effects and she tells me again how pleased she is with how well I'm tolerating treatment. I know it could be much worse. I show her my latest and greatest issue which is dark patches of extremely dry skin on the protrusion points in my feet, ankles and right knee. "That's very rare," she says. I swear she said that (Cass was there and she can testify). Of course. Apparently it will go away after treatment, although the patches may remain discolored for years. Good times. Then Dr. McAndrew leans her head back in her chair and waits for me to begin the onslaught of questions. I do. I have a ton of questions about my next cycle of chemo. I've been speaking to women about their side effects and am terrified. First, they've all gained weight. A lot of it. One woman gained 20 pounds. It's apparently from a steroid they give you to boost your white blood counts. Dr. McAndrew gives me a look that kindof says, "really, you're pregnant with stage III cancer and worried about gaining weight?" but goes on to explain why the steroid is necessary (incredibly high risk of infection otherwise). And yes, I'm pregnant with stage III breast cancer and am afraid of gaining weight. I mean, if I'm going to have cancer and be on chemo when I'm not pregnant, then I'd like to wither away to an emaciated 90 pounds. You know, I could be small the way Boris defines it. Gaining weight postpartum is just fucking rude. I ask her how on earth the plastic surgeons will know where to put my new, small boobs if I'm twice my normal size. I also asked Dr. Dao during my last acupuncture treatment if he'll be able to help with weight gain and other side effects after I deliver. He tells me that I'm a really good planner but goes on to say that he used to plan and now he prefers to "live in the moment and cherish every precious moment of life." I asked him if he's ever gone through chemo. He hasn't. "I was just wondering if you cherished your time being hooked up to an i.v. for 5 hours having poison dripped in to your body." That was the end of our conversation.
Back to Dr. McAndrew: Second, they've all experienced neuropathy. Dr. McAndrew says that I will almost certainly experience neuropathy in my hands and feet. The level of pain and duration differs for everyone. Some people experience it for years. Lastly, they've all experienced excruciating bone pain. One woman described it as horrific pain coursing through your veins and bones. Nice. Dr. McAndrew explains that that's also a result of the steroid but again tells me it's necessary. Normally I'd say shoot me, but since I'm doing all of this to stay alive, that seems inappropriate. Instead, I just tell her I'm so sad and afraid.
Our meeting isn't all bad news. We discuss Miracle Warrior and how miraculous he is. In my most recent appointment with Dr. Silverman, Dr. Silverman confirmed that his growth leaves nothing to worry about. Everything looks perfect. So perfect that I don't have to go back for another ultrasound for 6 weeks (not that I don't love seeing Miracle as often as possible, but it means Dr. Silverman truly isn't worried). Plus, I see Dr. Ottavi almost every 2 weeks, so I get to check up on him in the interim. We discuss my birth. My last round of this cycle of chemo is scheduled for December 30. I will be 32 weeks pregnant. I have to wait at least 4 weeks before delivering to ensure that my white blood count, and Miracle Warrior's, are normal. I tell Dr. McAndrew that I really don't want to deliver at 36 weeks and ask if I'm putting my life at risk by waiting another week. She doesn't think so. I'm going to try to push it back to 38 weeks the next time I meet with her. How much difference can 1 week make for me? She tells me that I'll have to wait 2 weeks after giving birth before starting the second cycle of chemo. 2 weeks. That's it. That's fucking it. While I start to tear up, she gives me news that makes me cry for the next few days. She says that I can breastfeed Miracle Warrior during those 2 weeks. She assures me that the chemo will be out of my system long before I deliver (and I confirm this with a doctor who literally wrote the book on drugs and breastfeeding). I am elated with the unexpected news and cry every time I think about it.
I leave Tower feeling really happy and positive. My baby is healthy, I can breastfeed him for 2 whole weeks and for the most part, I feel okay (under the circumstances). A good friend and my Aunt both tell me that they're going to be raising money for breast cancer and want to know if there's an organization I would like them to support. I go online to look for organizations that specifically provide money for research on triple negative breast cancer. I don't feel so happy and positive anymore. The only organizations I can find were created in honor of young women who died tragically young. All of the articles I read discuss how women with triple negative tumors are far more likely to die from the disease and have recurrences. Not that this news is new, but fuck. I become hysterical. I show Boris the website for the Triple Negative Breast Cancer Foundation and the picture of the 37 year old mother of a 2 year old who died 2 years after being diagnosed. "You are not going to be her," he tells me. "How do you know?" I ask him. "I know. I know. And it's what I have to believe. You are not going to be her," he repeats. He also says that foundations aren't interesting unless someone has died and insists that I stop looking online because I'm not going to find anything good. I do, but still cry myself to sleep.
Thankfully, I have breakfast with the 2 Katys in the morning. Katy 1 has finished treatment and Katy 2 has finished chemo and is about to start radiation shortly. It's like we've been good friends forever and we'd be friends even without cancer (although that certainly creates an instant bond). For fun (in our world), we exchange driver's licenses and can't believe how different (and younger) we all look pre-cancer. We compare scars from our surgeries and our ports. I tell them that I'm so tired and my mouth sores are the worst thing ever but then correct myself to say they just suck. Katy 1 insists that they are really are the worst thing ever. Actually, she says that every side effect is the worst thing ever. She's so my people. They look at me in shock when I tell them I haven't thrown up once and can't believe I can make it to pilates twice a week. "I'm exhausted just from walking up the stairs to the restaurant," Katy 2 says. She goes on to say that she just can't take it anymore. "Sharon, I'm sorry to say this in front of you because you still have so much treatment left, but I can't take it. I'm having a breakdown. Honestly, I just can't take it. Aren't you afraid of a recurrence?" she asks. "I can't go through this again." I am terrified of a recurrence and don't understand how can I possibly be monitored closely enough. Plus, I have zero control over the situation which I hate. Katy 1 tells us both that we can go through this again should we have to. "What choice do we have?" she says. "Look how strong we are," she continues. The time flies by and before I know it, we all have to leave for various doctor's appointments. We were all invited to the Bosom Buddies breakfast at Neimans and will see each other there in a few days.
I pull up to Neimans at 9am. The store isn't even open yet but there's a volunteer at the entrance who asks me if I'm here for the breakfast. I am. She tells me where Mariposa is but I'm already heading towards the escalator (as if I don't know where Mariposa is!). I see Katy 2 right away and she introduces me to 2 other breast cancer survivors - 1 who has been cancer free for 2 years and 1 who has 2 more rounds of radiation left and then she's done with treatment. Her name is Lucy and she also used Dr. Slate for her reconstruction. I'll have to see her tatas later, but she looks amazing. As we head towards a table, I hear a few women whispering "oh my god she's pregnant," as I walk by. It's really nice to be pitied even by women who have cancer. I ignore them and Lucy and I start chatting. I'm eyeing her unbelievable eyelashes and fabulous hair. She mentions that all of the eyelashes on her left eye fell out during her second to last chemo treatment. I just stare at her, confused. She tells me that she has an amazing eyelash woman who can give me the best lashes ever should mine fall out. So now I have to ask if her hair is real or not. It's not. We have the same wig maker. It's so real I can't believe it. Neither can she. She just assumed I didn't lose my hair because I was pregnant. It's hard to see how real the wig looks on your own head but on someone else, it's pretty incredible.
As we dine on popovers and eggs, Neimans' employees show us how to put on fake eyelashes and tie scarves. It's pretty amusing. And then one of the Bosom Buddies gets up to speak about the event and Tower Hematology and how lucky we all are to be in such good hands. She looks familiar to me and I realize that she was my 10th grade English teacher. I cry as she tells us that the original organizer of the event lost her battle to cancer a year ago. I approach her later and she looks at me and says "please tell me I'm not seeing one of my students here." "You are," I tell her. She's an 8 year breast cancer survivor and it's really nice reconnecting with her. We have been in touch since and she's going to be my Bosom Buddy. In her email to me she wrote "You have probably heard this sentiment, but it is worth repeating. As a friend and breast cancer survivor said to me when I was first diagnosed, this is a club none of us ever wanted to join, but it is truly an amazing sisterhood. I'm sorry you ever had to join, and especially so young, but you have many "sisters" who are here for you." I cry.
I have 3 more days before round 5 of chemo. My last appointment of the week is with a new lymphedema specialist (who my English teacher also sees). My left arm isn't visibly swollen, but it feels heavy and I can tell there's some swelling. The physical therapy office is in the south bay which is a schlep. The specialist is warm and motherly and quickly gets down to business. She measures both of my arms and tells me that there's a 1/2 inch difference in size in a few places in my upper arm. Great. She tells me that the compression garment (sleeve) I've been wearing is insufficient and orders me a new one. I tell her I rarely wear my sleeve because I thought it was better not to restrict the flow of any fluid. Wrong. If there's any difference in size, she says the sleeve is a must. "Will I have to wear it for the rest of my life?" I ask. "Why? Is it uncomfortable?" she wants to know. It's not uncomfortable, it's just ugly and who would want to wear it forever? She doesn't tell me I won't have to wear it forever. She just says we should concentrate on minimizing the swelling.
She begins a 45 minute "drainage massage" that's relaxing, but not really a massage. The lymph nodes are just under the skin, so the pressure is virtually non-existent. I ask her if I can still get normal massages (which I love). I can't. Fuck. Is there anything I can do? I tell her that I normally walk on the treadmill and do power yoga for exercise. She says "well you can definitely walk as long as you don't work up a sweat, and yoga is great because it's stretching and breathing." Who takes a leisure walk on a treadmill? And I explain to her that I don't breath and stretch in yoga, I sweat my ass off and do 100 push ups. "Oh no. That's not something we recommend." Fuck. I've taken a yoga class before where all we did was breath and stretch and it wasn't relaxing. It was frustrating and annoying and I was crawling out of my skin wondering when we were going to actually do something. I ask her if she's aware that women should do cardiovascular exercise to prevent cancer. Do I have to chose between cancer and looking like the elephant woman? I might.
She teaches me a self massage that I really can't imagine does anything, but I'm to do it twice a day (and I have been doing it religiously, but see no difference whatsoever). And, she also is ordering me a nighttime sleeve that looks like an oversized oven mit that goes from my knuckles to my armpit. Just in case sleeping isn't already uncomfortable enough. That sleeve is forever, too. I'm just going to believe, regardless of what anyone tells me, that once I'm not pregnant and not on chemo and not swollen all the time, that this is going away. It has to. I can't deal with compression garments for the rest of my life (as long or short as that my be) and a life with no activity. At least the kind of activity I like.
And on that happy note I have 2 appointment free days to spend with my boys before chemo round 5.
Wednesday, December 3, 2008
The Book of Sharon
I think I'm a modern day Job. I'm being tested for sure. I don't know why since I think I'm a pretty good person and if there is a God, he already knows I think he's an asshole and don't believe in him. But...just in case being pregnant with cancer isn't enough to deal with in and of itself, this week I woke up on the morning of chemo round 5 with a cold. A cold that Miles gave me. He's fine now but for a cough that causes him to wake up at 5am and moan in bed for an hour. Poor Miles. Poor me. Mama needs her sleep and since I'm up every 2 hours to pee and then can't fall back asleep listening to my husband snore or worrying about whether I'm going to die soon, 5am is usually when I'm able to pass out for an hour or two. And just in case that's not enough, my vet called to tell me that Norman's diabetes is back and he needs 2 shots of insulin per day. I had found someone willing to adopt him until he moves on to kitty heaven knowing full well that he's peeing all over my house, but now I have to ask her if she'll take him and poke him with a needle twice a day. Methinks no. And just in case that's not enough, Boris and I received a letter from the I.R.S. asking for our 2006 tax return. Because what we need now is to be audited. Good times. Good times.
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