After chemo, I go in to Tower the following 2 days for hydration. Although I'm not nauseous, I'm too afraid that I will be if I don't go. My headache persists for the next week, but it gradually lessens and it's tolerable. Sure I could take Tylenol, but I figure that chemo is enough for Miracle so I'd rather suffer a little (or an unbelievable amount) to subject him to as little harmful stuff as possible. The worst side effect I'm suffering is indigestion. I swear there's acid in my throat and mouth. And I can feel every piece of food moving down my digestive tract. It's totally disgusting, but I promised Miracle that no matter what I'd eat a good diet full of protein we both need, so I force feed myself cruciferous veggies and protein with every meal. Pregnancy cravings and a chemotherapy diet so don't mix. I also have the worst cotton mouth ever. I'm drinking 5 liters of water a day and receiving 3 liters of fluid over the course of 3 days. You'd think I'd be beyond hydrated. Apparently not. I do pee about every 20 minutes which means I'm not getting much sleep. But the indigestion begins to subside over the week and if it weren't for the pain in my arms, by the second week after round 1, I'd feel almost normal.
About my arms, the 2 week recovery I was told about after my lumpectomy was a lie. It's been 3 weeks and I still can't lift my left arm past my shoulder. And the port that was no big deal is a really big fucking deal to me. It hurt so badly the day after it was inserted that I couldn't drive myself to my doctors appointments. The day after round 1, I had to see the cardiologist for a baseline EKG and then was hydrated at Tower (to hopefully keep the nausea at bay). The EKG was real fun since I couldn't lay on my left side or raise my arm above my head. So the poor technician had to maneuver around my giant, swollen breast to get the necessary images of my heart. It took twice as long as usual. Immediately afterward, while I was being hydrated, I asked the nurse to check my port and make sure it was in fact inserted properly. Since everyone swore it wouldn't hurt, surely something had to be wrong. But she assured me that it looked perfect. "So how long will hurt for?" I ask. "The truth this time, please." I'm told 2 weeks (just a side note that 1 month after the surgery, I still can't lift my left arm much past my shoulder and still have tightness in my right arm from the port).
I'm also told that I can't lift anything heavy for 2 weeks because my right arm needs to heal. I'm not supposed to lift anything heavy with my left arm...ever...to avoid lymphodema. So that leaves me armless, at least for 2 weeks. I ask one of the nurses how I'm supposed to lift my son. "How old is he?" she asks. I tell her that he's 1. She asks if he's walking. He is. "So you don't have to carry him," she says. "Well," I tell her, "Miles is indeed gifted and advanced for his age, and although I'm sure he understands English perfectly, he doesn't stop playing when I tell him it's time for a nap or a meal and he's incapable of catapulting himself into his highchair or crib." But interesting thought.
So for at least two weeks, I can't care for Miles the way I want to. I don't like needing help. I've never needed it. But now, I need help carrying him (after all, he's 26 pounds), and my arms tire when I push him on the swing, and I've been told to avoid the sun because chemo makes my already sensitive skin even more sensitive. So I have a small army of friends and family who are by my side at all times. They come to the playground with me, they have playdates at my house, they leave their own children at home to come help me, they help me feed Miles dinner and bathe him and put him to bed. I've watched some of my friends do my dishes while they rested their own babies on their hips. I am so lucky to have these people in my life. And while I'm so grateful for the help, it makes me sad. I feel sad to sit on the sidelines and watch someone else push my son on the swing or carry him around the house when I want to be the one doing those things.
The following Tuesday after chemo, I return to Tower for a blood draw. This will let my doctors know how I'm responding to the chemo and the havoc it's wrecked on my body so far. Angela, the head nurse, rushes by and says "I'll be right with you gorgeous." When she comes to discuss my blood results with me, she tells me how great I look in my purple dress. I think back to the last few appointments I've had at the Breast Center and am realizing that each time I go, the receptionist compliments my shirt color, or my eyes and the nurse will comment on my shoes. I wonder if they're trained to compliment sick people? It's nice, I guess, but I still have cancer, so who cares if I have cute shoes (although it's true that my shoes are usually noteworthy)? Angela is pleased with my blood work. I'm in good shape at the moment which is a relief. Plus, I have virtually no side affects. And I still have all of my hair. I ask if it's possible that it won't fall out. "I have so much of it," I exclaim. Maybe I'll be an exception? "Give it two weeks," Angela says. I sigh. She was right. Not 10 days later, my hair starts to go (only on my head).
A few days before round 2 of chemo, I start to experience excruciating pain in my mouth. My upper gums are incredibly sore and my tongue is raw and swollen. I ignore it at first, but the pain becomes so intense that I cry when I eat. I was warned about mouth sores caused by the chemo (called mucositis or something mucousy and gross), but don't feel any sores in my mouth. I go to see the nurses at Tower to see if there's something that can help the pain because I'm afraid it will become so bad I won't be able to eat. And I don't break promises, so I have to eat (I'd just prefer to do so without crying). I'm sporting my wig and Anne tells me that she likes my haircut. I smile a sly smile and she can't believe I'm wearing a wig. "It's so real," she says. "No one will ever know." Anne and Angela don't see anything in my mouth and explain that it's very unusual to experience a side effect from chemo so late in the cycle. Perhaps it's pregnancy related or a side affect of my indigestion, Angela hypothesizes (and side note - before Angela looked in my mouth, she needed to take a moment "to admire me." Swear.). They take a swab of my gums and throat to be sure. Angela tells me that there is a mouthwash they can prescribe that will help with the pain but she's not sure it's safe for pregnancy (again, why a mouthwash might be problematic but chemo isn't, is mindboggling). I'm sent home sans mouthwash and am told that if the swab reveals any infection, someone will call me. Neither Anne nor Angela will be working the next day.
So of course I wake up the next morning in agony, look inside my mouth and see bumps on the back of my tongue. I don't know if they weren't there yesterday or if everyone missed them, but I need help...now. I call Dr. Ottavi on her cell phone to ask if the mouth wash is safe. It is. Without calling the office, I get in my car and drive to Tower. I'm pissed. Why didn't they think to call Dr. Ottavi? I go in a scarf (which screams, I have cancer) and a tight tank top (which screams, I'm pregnant). I wait 40 minutes to see the nurse. She greets me in the waiting room where I'm surrounded by 4 or 5 people and asks what the problem is. "The problem," I say, "is that I was here yesterday complaining of horrible mouth pain and was sent home without any medication because no one thought to call my o.b. So now I'm here, again, have wasted 40 minutes of what could be a tragically short life, have gotten an o.k. from my o.b. to get the medication, which I'd like, NOW." The nurse suggests we go into an examination room "for some privacy." Fine. I tell her that I need my doctors to communicate and that if someone here doesn't know what to do with a pregnant person, they should call someone who does. She's extremely nice, gives me mouthwash and some other tips that might clear up the sores and keep them away. I apologize for being rude, but tell her I'm frustrated that I had to waste time at the doctor's office given that I'll be receiving mail here next week, and plus, I'm pregnant with cancer and am just plain pissed.
Thankfully, the mouthwash helps right away and the pain is tolerable. I can eat without being in pain. A few bumps remain on the back of my tongue which concerns me since I go in for treatment again in a few days. But all I can do is be thankful that for now, I'm feeling o.k.
Tuesday, September 30, 2008
Tuesday, September 16, 2008
Chemo Round One
So today is the big day. Round 1 of chemotherapy. I'm terrified. I hate the unknown. I hate being sick. I hate being nauseous and vomiting is incredibly traumatic for me. So not knowing what the side affects will be is killing me (not really, the cancer may be killing me, the unknown is just scary). Boris and I attended "chemo class," (yes, it's really called chemo class) to learn about the vast array of horrible things the chemo may do to my body. Nausea, vomiting, weight loss, weight gain (what!?), mouth sores, hair loss, change of taste, burning veins, the list goes on and on. Anne, who is going through this list is lovely, with long, luscious blond hair. Again...rude. Boris and I get A's. We've already researched all of this and Anne's impressed with how much we know. She asks if I want to see the treatment area. I don't. She thinks it's a good idea and begins to lead the way introducing Boris and me to the head nurses and staff as we walk. Everyone knows who I am. "Hi Sharon. I've been looking forward to meeting you," one nurse says. Another promises to take good care of me and my baby. Everyone knows my name before I'm introduced. I'm a cancer celebrity. Fancy. The only comment I make during the tour is that everyone receiving treatment has hair.
Boris and I arrive at Cedars at 730am. I have to get my pasport in before I go for chemo. The pasport as I understand it is a port that is surgically inserted into my upper right arm that has a tube that travels through my chest to a central vein called the superior vena cava. It allows me to avoid getting stuck with a needle a million times a week and should spare my veins and skin from getting burned by the chemo. The doctors will administer my chemo and draw my blood through the port. All of the doctors and nurses have reassured me that it's a very minor procedure that does not hurt at all. Although all of my doctors are at Cedars which has a centralized computer system, I have to fill out the same paperwork for the 9837930 time. The amount of time and paper wasted is criminal.
A nurse escorts Boris and me from one waiting room to the next. We wait some more. In the second waiting room, there's a colorful diagram explaining the port. It's something you might show to a child who you're trying not to scare. But I'm scared and start crying. This is really happening. We're moved into a surgery/examination room and wait some more. A nurse comes in to ask me the same questions about my health that I've been asked a million times. She too thinks I'm so healthy. Aside from cancer, of course. She has some new and odd questions for me, like do I wear my seat belt. That seems relevant to cancer. She also asks me if there's any abuse at home. I say no. Boris says yes. He smiles at me. "She abuses me." he says.
We wait for 2.5 hours. I'm going nuts. Finally, the surgeon comes to get me. Boris has to leave because the doctors will operate in a sterile room. I think the surgeon had failed dreams of stand up comedy and as he's preparing himself, the nurse and the room, he's spitting out jokes and trying to engage me in conversation that I'm really not interested in having. I just want to get this over with and surely he doesn't really care whether I'm a native Angelino or not. Interestingly, part of the sterilization process includes covering me up with lots of paper. It's bizarre and I feel like a loosely wrapped mummy. Like the other doctors I've spoken to, he promises that the only pain I'll feel is the lidocaine shot to numb my arm. I exhale deeply as he pricks me. A few seconds later he asks if I can feel him poking me. "Yup. I feel that," I say. "Really?" he responds. No asshole - I'm kidding. He gives me another shot. And another. And another. I am finally numb. But, I can hear the clicking of scissors and knives and think I might puke. He asks me to turn my head towards him and touch my chin to my shoulder. I do. Then I feel something snaking up my chest and neck and exclaim "gross!" Ugh. Ugh. Ugh. Yuck. Yuck. Yuck. Then I hear scissors snipping. I am beyond nauseous. I ask him when he'll be done and he says he's done. But he keeps snipping and clicking metal objects. I ask him again. And again. I probably ask him 5 times if he's finished. He keeps saying yes. "Then why are you still operating on me?" I ask. When he's actually done, he tells me that usually the procedure is performed under an x-ray to ensure proper placement, but since I'm pregnant, he did his best and before I can leave, I have to have a shielded x-ray to make sure everything's in place. "What if it's not?" I ask. "Then you get to see me again!" he chuckles. "I never want to see you again," I tell him, "unless you're taking the port out."
I'm supposed to start chemo in 5 minutes and haven't left the operating room at Cedars. The surgeon says he'll personally wheel me down to the emergency room where I'm to get x-rayed. I hop into the wheel chair which I don't understand why I'm in since I'm 100% ambulatory and we get Boris from the waiting room. "I can't believe how long that took." I say to Boris. He laughs and tells me that he didn't even make it through 5 songs on his ipod. Boris and I endure more jokes from the surgeon, but the x-ray reveals that the port is properly placed, so we leave and head to Tower oncology. My arm is throbbing. For something that's not supposed to hurt, it hurts. A lot.
I'm lead to a reclining chair in the treatment room of Tower oncology. We have a corner spot in the back of the room which I like because it's less hectic and chaotic. Anne hugs Boris and me and explains that she's going to start giving me fluids and anti-nausea medication. After 2 hours, I still haven't received any chemo. I can't believe how long everything takes. Boris and I decide to order lunch from Kate Mantellini which is directly across the street. I call to place my order. The only thing I want to eat is their white chicken chili. The waitress tells me that they don't make the chili to go because it's too hot. "What?" I ask. "It's too hot," she explains. "Someone got burned once, so now we won't prepare it to go." "Well can you let it cool off before you package it up?" I ask. "What if I draft a release?" She laughs and agrees to make an exception. But when Boris returns with our food, he tells me that the owner refused to allow the exception and wouldn't give us the chili. "Did you tell him that it's for your pregnant wife who is receiving chemo as you speak for stage III breast cancer?" I ask Boris. "Snuggler (my pet name), I'm not going to play the cancer card for food," he replies. I tell him that he should play the PREGNANT cancer card for fucking everything. I mean if I have to endure this, at least I should get everything else I want, like chili, right?
We eat and Anne comes to tell us that she's going to begin administering the first of the 3 chemo agents. She injects the syringe with bright red liquid in it into my port. She tells me not to be alarmed if my pee is red. She injects me with the second agent as she sits and chats with us. She's sassy and funny and tells me that although she wishes she were doing anything else to me right now, she's starting to cure me and that's a great thing. She reminds me that although I'm stage III, as far as we know the cancer hasn't metastasized. "CNO" she says. "Cancer, Nodes, No Mets." Fun new abbreviation.
As she starts to administer the final agent through my i.v., I realize that my head has started pounding and things look a little hazy. After 5 hours, we can finally go home. I can't wait to see Miles. I'm not sure I'm going to be able to play with him given my headache and vision, but I can't wait to see him nonetheless.
Before I leave, Anne reminds me to drink lots of fluid as that will help stave off nausea. She tells me to drink 3 liters a day, so I drink 5. 1 round down, 5 to go.
Boris and I arrive at Cedars at 730am. I have to get my pasport in before I go for chemo. The pasport as I understand it is a port that is surgically inserted into my upper right arm that has a tube that travels through my chest to a central vein called the superior vena cava. It allows me to avoid getting stuck with a needle a million times a week and should spare my veins and skin from getting burned by the chemo. The doctors will administer my chemo and draw my blood through the port. All of the doctors and nurses have reassured me that it's a very minor procedure that does not hurt at all. Although all of my doctors are at Cedars which has a centralized computer system, I have to fill out the same paperwork for the 9837930 time. The amount of time and paper wasted is criminal.
A nurse escorts Boris and me from one waiting room to the next. We wait some more. In the second waiting room, there's a colorful diagram explaining the port. It's something you might show to a child who you're trying not to scare. But I'm scared and start crying. This is really happening. We're moved into a surgery/examination room and wait some more. A nurse comes in to ask me the same questions about my health that I've been asked a million times. She too thinks I'm so healthy. Aside from cancer, of course. She has some new and odd questions for me, like do I wear my seat belt. That seems relevant to cancer. She also asks me if there's any abuse at home. I say no. Boris says yes. He smiles at me. "She abuses me." he says.
We wait for 2.5 hours. I'm going nuts. Finally, the surgeon comes to get me. Boris has to leave because the doctors will operate in a sterile room. I think the surgeon had failed dreams of stand up comedy and as he's preparing himself, the nurse and the room, he's spitting out jokes and trying to engage me in conversation that I'm really not interested in having. I just want to get this over with and surely he doesn't really care whether I'm a native Angelino or not. Interestingly, part of the sterilization process includes covering me up with lots of paper. It's bizarre and I feel like a loosely wrapped mummy. Like the other doctors I've spoken to, he promises that the only pain I'll feel is the lidocaine shot to numb my arm. I exhale deeply as he pricks me. A few seconds later he asks if I can feel him poking me. "Yup. I feel that," I say. "Really?" he responds. No asshole - I'm kidding. He gives me another shot. And another. And another. I am finally numb. But, I can hear the clicking of scissors and knives and think I might puke. He asks me to turn my head towards him and touch my chin to my shoulder. I do. Then I feel something snaking up my chest and neck and exclaim "gross!" Ugh. Ugh. Ugh. Yuck. Yuck. Yuck. Then I hear scissors snipping. I am beyond nauseous. I ask him when he'll be done and he says he's done. But he keeps snipping and clicking metal objects. I ask him again. And again. I probably ask him 5 times if he's finished. He keeps saying yes. "Then why are you still operating on me?" I ask. When he's actually done, he tells me that usually the procedure is performed under an x-ray to ensure proper placement, but since I'm pregnant, he did his best and before I can leave, I have to have a shielded x-ray to make sure everything's in place. "What if it's not?" I ask. "Then you get to see me again!" he chuckles. "I never want to see you again," I tell him, "unless you're taking the port out."
I'm supposed to start chemo in 5 minutes and haven't left the operating room at Cedars. The surgeon says he'll personally wheel me down to the emergency room where I'm to get x-rayed. I hop into the wheel chair which I don't understand why I'm in since I'm 100% ambulatory and we get Boris from the waiting room. "I can't believe how long that took." I say to Boris. He laughs and tells me that he didn't even make it through 5 songs on his ipod. Boris and I endure more jokes from the surgeon, but the x-ray reveals that the port is properly placed, so we leave and head to Tower oncology. My arm is throbbing. For something that's not supposed to hurt, it hurts. A lot.
I'm lead to a reclining chair in the treatment room of Tower oncology. We have a corner spot in the back of the room which I like because it's less hectic and chaotic. Anne hugs Boris and me and explains that she's going to start giving me fluids and anti-nausea medication. After 2 hours, I still haven't received any chemo. I can't believe how long everything takes. Boris and I decide to order lunch from Kate Mantellini which is directly across the street. I call to place my order. The only thing I want to eat is their white chicken chili. The waitress tells me that they don't make the chili to go because it's too hot. "What?" I ask. "It's too hot," she explains. "Someone got burned once, so now we won't prepare it to go." "Well can you let it cool off before you package it up?" I ask. "What if I draft a release?" She laughs and agrees to make an exception. But when Boris returns with our food, he tells me that the owner refused to allow the exception and wouldn't give us the chili. "Did you tell him that it's for your pregnant wife who is receiving chemo as you speak for stage III breast cancer?" I ask Boris. "Snuggler (my pet name), I'm not going to play the cancer card for food," he replies. I tell him that he should play the PREGNANT cancer card for fucking everything. I mean if I have to endure this, at least I should get everything else I want, like chili, right?
We eat and Anne comes to tell us that she's going to begin administering the first of the 3 chemo agents. She injects the syringe with bright red liquid in it into my port. She tells me not to be alarmed if my pee is red. She injects me with the second agent as she sits and chats with us. She's sassy and funny and tells me that although she wishes she were doing anything else to me right now, she's starting to cure me and that's a great thing. She reminds me that although I'm stage III, as far as we know the cancer hasn't metastasized. "CNO" she says. "Cancer, Nodes, No Mets." Fun new abbreviation.
As she starts to administer the final agent through my i.v., I realize that my head has started pounding and things look a little hazy. After 5 hours, we can finally go home. I can't wait to see Miles. I'm not sure I'm going to be able to play with him given my headache and vision, but I can't wait to see him nonetheless.
Before I leave, Anne reminds me to drink lots of fluid as that will help stave off nausea. She tells me to drink 3 liters a day, so I drink 5. 1 round down, 5 to go.
Sunday, September 14, 2008
The Decision
When I feel up to talking, I call Dr. Ottavi and ask her if she can perform an abortion if that's the decision Boris and I make. She can't because I'll be past 12 weeks pregnant when the procedure is performed. She gives me the number of a surgical center that can. I'm crying too hard to call. Boris calls instead. They are booked until the following Wednesday. They explain to Boris that since I am in my second trimester, the abortion is a two day procedure. On day 1 they ripen my cervix and kill the fetus. On day 2, they suck it out. I am a die-hard democrat and am fervently pro-choice. But after seeing Junior Jr. several times, hearing his heartbeat and madly loving Miles, that's how I see it. Boris cries as he schedules the appointment. We wonder if we're Republicans and if I have anything in common with Sarah Palin. We're scared.
Now that we have the full picture, it's time for Boris and I to make a final decision. I set up an appointment with Dr. McAndrew to discuss treatment and my options.
Knowing that I want to keep the baby, Dr. McAndrew recommends 6 rounds of a chemo regimen called FEC. It's almost the same treatment my Mom had. I will receive it every 3 weeks. I've read numerous European studies about babies who received FEC in utero. By and large, they are healthy, normal children. I will take a short break to deliver, then will undergo 12 weekly rounds of a second chemo regimen: carboplatin and taxol. She can't tell me what the break in my treatment means to my outcome. No one can. There haven't been any studies. If I wasn't pregnant, she would recommend a different regimen. Instead of 6 cycles of FEC, she would probably recommend 4 "dose dense" (meaning every 2 weeks instead of every 3 weeks) cycles of a regimen called AC followed immediately by the 12 rounds of carboplatin and taxol. I ask her over and over again whether the dose dense AC regimen is superior and whether I am putting my life at more risk. She keeps saying that there haven't been any comparative studies on FEC versus dose dense AC and she cannot say that I'm putting myself at an increased risk. But we don't know for sure. She does take my face in her hands and tell me that she thinks I'm going to be fine. "I really do," she says. I love her. I am to start chemo next week.
I call almost every oncologist I've spoken to and discuss this regimen with them. They all think that given the circumstances, it's a good plan. Meanwhile, a recent article in the New York Times on pregnancy and cancer featured a doctor at MD Anderson who has treated a significant number of women who are pregnant with breast cancer. I speak with his office and send them my entire medical file. I ask if I can have a phone consultation with him but am told he "doesn't do phone consultations." He wants me to come to MD Anderson for a week for further tests and a consult. His assistant keeps telling me he wants to do a mammogram and biopsy and scans even though I repeatedly explain to her that I've already had a lumpectomy so there is nothing for him to biopsy. I explain ad nauseum to her that I'm not going to stay in Texas for a week when I can have any necessary additional tests done here so there would be nothing else for him to do except review my file for a consultation. Regardless, she says he won't speak to me over the phone. I book a flight for the following evening to go to Texas. Boris and I have decided that this doctor's opinion will be our final decision. If he agrees with my course of treatment, I'll move forward. If he thinks I'm placing my life in peril, I'll have an abortion.
So of course I get a message from his assistant the following morning that MD Anderson is shutting down due to hurricane Ike. God. Fucking. Dammit. Even though I had bought a ticket to fly to Texas to hear this man's opinion in person, he still refuses to speak to me over the phone. Fucker.
Instead of flying to Texas, my best friend (I have two) Amara, who has flown in from Portland to see me, and I drive to UCI to meet with an oncologist who comes highly recommended by a dear friend of mine who is an obgyn oncology fellow at UCI. This oncologist, Dr. Mehta, has published several articles on triple negative tumors. Dr. Mehta is a kind and honest woman and a good person. She tells me that she has contacted oncologists at several of the best cancer facilities in the country to find out how they would treat me and what kind of results they have had with various treatments during pregnancy. She is very aggressive in her approach to my type of tumor in response to the tumor's aggressiveness. She tells me that she does believe there is a risk in not having dose dense treatments and in the 6-8 week delay between chemo regimens. She points me to some recent research that I can obtain online. If I was her patient, she would give me the dose dense treatment followed immediately by the second regimen of chemo even though there are only 15 case studies on these drugs and fetuses. Initially I think 15 case studies doesn't sound bad until I realize that means 15 women. Period. I'm simply not comfortable with that.
I have now obtained almost every opinion humanly possible. The problem is that no one has a good answer; there is still so much unknown about pregnancy and cancer because no one would dare conduct controlled studies on pregnant women, and no one can make this decision but me and Boris. I don't understand how I'm supposed to make this decision. Without clear data, how do I decide whether to abort a wanted child who more likely than not will be perfect knowing I may never have more? How do I decide whether I'm more likely to live with one course of treatment or the other? And if I do live, how do I live with my decision? If this baby so much as sneezes, Boris and I will be struck with terror. If anything at all is wrong with him, it will be my fault. How do I live with that? What if he doesn't roll over, crawl, walk, babble as early as Miles? We'll be wracked with fear. One doctor asks me, "Mom to Mom," how compulsive I am. "On a scale of 1 to 10, I'm an 11," I tell her. Miles only eats organic food. His diapers and wipes have no synthetic chemicals or chlorine in them. Products with parabens, synthetic fragrances or chemicals have never touched his little body. If he sleeps poorly, I'm suicidal. She asks if I can make it through this pregnancy without being totally consumed with fear of the future. Can I? Can Boris? Pregnancy is hard on the body the doctors remind us. Chemo is brutal. The combination is mind blowing. Ironically, the doctors keep telling me they're not so concerned with the baby. The chance of anything being wrong with him is minute, they say. I'm the concern and the unknown.
I've never been so sad or scared in my whole life. I'm used to getting everything I want. Seriously. I think I have a pretty fearless, fierce attitude. But I can't pull it together for this. It's all consuming. I just think I'm going to die. I spend 24 hours a day afraid I'm not going to watch Miles grow up and that he's not going to remember what I look like. I tell Boris he needs to start video taping me and taking more pictures of me with Miles because I don't want Miles to forget me. I'm afraid he's going to grow up calling someone else Mommy. It's one of the most horrifying thoughts imaginable. After each doctor's appointment, Miles is the only thing that makes me happy. I can't wait to see his face, see him smile at me and give him a giant smooch on his gorgeous lips.
Boris and I keep changing positions on whether to keep the baby or not. At first, he leans towards aborting. He has realized that the real worst case scenario is a sick child and me dead. He's not sure he can handle that. He's so afraid of a sick baby. I want to keep the baby and truly believe that he's going to be fine. After more tests at the hospital where I see so many sick children, I change my mind. The only thing worse than being pregnant with cancer is to have a sick child. I'm too afraid to keep the baby. Boris however now believes that we're both going to be fine. He says that we need take his willingness to potentially raise two boys by himself off the table. He's willing he says. Although he's sure he's not going to have to.
I call Dr. McAndrew to discuss my latest oncologist meeting with her. She calls me back at 700pm on a Friday night and spends an hour with me on the phone. She's not egotistical in the least, is not offended in any way that I keep questioning her and speaking with other doctors and discusses in detail all of the information I've amassed. She even goes online with me to discuss the recent study I was pointed to at UCI. She tells me that there simply isn't enough data to know whether dose dense treatment is vastly superior and she cannot tell me that aborting this baby will increase my chances of survival. She says that if I wasn't pregnant, it would be much easier for her, but there is no good reason for me not to be. I start crying and tell her that I am faced with every mother's worst nightmare. Choosing between herself and her child. If we were dealing with Miles, the choice would be clear. I would give up my life in a heartbeat for him. And even though Junior Jr. isn't with us yet and can't survive without me, I already see him as my next Miles and simply don't think I'll be able to live after an abortion.
And that's how Boris and I make our decision. We had every piece of information possible, but it came down to what was in our hearts. I decide that I'm going to have faith in my doctors and my body and together we're going to cure me and protect my next son (no longer "Junior Jr." He's now "Miracle"). I get my first night's sleep in over 3 weeks.
Now that we have the full picture, it's time for Boris and I to make a final decision. I set up an appointment with Dr. McAndrew to discuss treatment and my options.
Knowing that I want to keep the baby, Dr. McAndrew recommends 6 rounds of a chemo regimen called FEC. It's almost the same treatment my Mom had. I will receive it every 3 weeks. I've read numerous European studies about babies who received FEC in utero. By and large, they are healthy, normal children. I will take a short break to deliver, then will undergo 12 weekly rounds of a second chemo regimen: carboplatin and taxol. She can't tell me what the break in my treatment means to my outcome. No one can. There haven't been any studies. If I wasn't pregnant, she would recommend a different regimen. Instead of 6 cycles of FEC, she would probably recommend 4 "dose dense" (meaning every 2 weeks instead of every 3 weeks) cycles of a regimen called AC followed immediately by the 12 rounds of carboplatin and taxol. I ask her over and over again whether the dose dense AC regimen is superior and whether I am putting my life at more risk. She keeps saying that there haven't been any comparative studies on FEC versus dose dense AC and she cannot say that I'm putting myself at an increased risk. But we don't know for sure. She does take my face in her hands and tell me that she thinks I'm going to be fine. "I really do," she says. I love her. I am to start chemo next week.
I call almost every oncologist I've spoken to and discuss this regimen with them. They all think that given the circumstances, it's a good plan. Meanwhile, a recent article in the New York Times on pregnancy and cancer featured a doctor at MD Anderson who has treated a significant number of women who are pregnant with breast cancer. I speak with his office and send them my entire medical file. I ask if I can have a phone consultation with him but am told he "doesn't do phone consultations." He wants me to come to MD Anderson for a week for further tests and a consult. His assistant keeps telling me he wants to do a mammogram and biopsy and scans even though I repeatedly explain to her that I've already had a lumpectomy so there is nothing for him to biopsy. I explain ad nauseum to her that I'm not going to stay in Texas for a week when I can have any necessary additional tests done here so there would be nothing else for him to do except review my file for a consultation. Regardless, she says he won't speak to me over the phone. I book a flight for the following evening to go to Texas. Boris and I have decided that this doctor's opinion will be our final decision. If he agrees with my course of treatment, I'll move forward. If he thinks I'm placing my life in peril, I'll have an abortion.
So of course I get a message from his assistant the following morning that MD Anderson is shutting down due to hurricane Ike. God. Fucking. Dammit. Even though I had bought a ticket to fly to Texas to hear this man's opinion in person, he still refuses to speak to me over the phone. Fucker.
Instead of flying to Texas, my best friend (I have two) Amara, who has flown in from Portland to see me, and I drive to UCI to meet with an oncologist who comes highly recommended by a dear friend of mine who is an obgyn oncology fellow at UCI. This oncologist, Dr. Mehta, has published several articles on triple negative tumors. Dr. Mehta is a kind and honest woman and a good person. She tells me that she has contacted oncologists at several of the best cancer facilities in the country to find out how they would treat me and what kind of results they have had with various treatments during pregnancy. She is very aggressive in her approach to my type of tumor in response to the tumor's aggressiveness. She tells me that she does believe there is a risk in not having dose dense treatments and in the 6-8 week delay between chemo regimens. She points me to some recent research that I can obtain online. If I was her patient, she would give me the dose dense treatment followed immediately by the second regimen of chemo even though there are only 15 case studies on these drugs and fetuses. Initially I think 15 case studies doesn't sound bad until I realize that means 15 women. Period. I'm simply not comfortable with that.
I have now obtained almost every opinion humanly possible. The problem is that no one has a good answer; there is still so much unknown about pregnancy and cancer because no one would dare conduct controlled studies on pregnant women, and no one can make this decision but me and Boris. I don't understand how I'm supposed to make this decision. Without clear data, how do I decide whether to abort a wanted child who more likely than not will be perfect knowing I may never have more? How do I decide whether I'm more likely to live with one course of treatment or the other? And if I do live, how do I live with my decision? If this baby so much as sneezes, Boris and I will be struck with terror. If anything at all is wrong with him, it will be my fault. How do I live with that? What if he doesn't roll over, crawl, walk, babble as early as Miles? We'll be wracked with fear. One doctor asks me, "Mom to Mom," how compulsive I am. "On a scale of 1 to 10, I'm an 11," I tell her. Miles only eats organic food. His diapers and wipes have no synthetic chemicals or chlorine in them. Products with parabens, synthetic fragrances or chemicals have never touched his little body. If he sleeps poorly, I'm suicidal. She asks if I can make it through this pregnancy without being totally consumed with fear of the future. Can I? Can Boris? Pregnancy is hard on the body the doctors remind us. Chemo is brutal. The combination is mind blowing. Ironically, the doctors keep telling me they're not so concerned with the baby. The chance of anything being wrong with him is minute, they say. I'm the concern and the unknown.
I've never been so sad or scared in my whole life. I'm used to getting everything I want. Seriously. I think I have a pretty fearless, fierce attitude. But I can't pull it together for this. It's all consuming. I just think I'm going to die. I spend 24 hours a day afraid I'm not going to watch Miles grow up and that he's not going to remember what I look like. I tell Boris he needs to start video taping me and taking more pictures of me with Miles because I don't want Miles to forget me. I'm afraid he's going to grow up calling someone else Mommy. It's one of the most horrifying thoughts imaginable. After each doctor's appointment, Miles is the only thing that makes me happy. I can't wait to see his face, see him smile at me and give him a giant smooch on his gorgeous lips.
Boris and I keep changing positions on whether to keep the baby or not. At first, he leans towards aborting. He has realized that the real worst case scenario is a sick child and me dead. He's not sure he can handle that. He's so afraid of a sick baby. I want to keep the baby and truly believe that he's going to be fine. After more tests at the hospital where I see so many sick children, I change my mind. The only thing worse than being pregnant with cancer is to have a sick child. I'm too afraid to keep the baby. Boris however now believes that we're both going to be fine. He says that we need take his willingness to potentially raise two boys by himself off the table. He's willing he says. Although he's sure he's not going to have to.
I call Dr. McAndrew to discuss my latest oncologist meeting with her. She calls me back at 700pm on a Friday night and spends an hour with me on the phone. She's not egotistical in the least, is not offended in any way that I keep questioning her and speaking with other doctors and discusses in detail all of the information I've amassed. She even goes online with me to discuss the recent study I was pointed to at UCI. She tells me that there simply isn't enough data to know whether dose dense treatment is vastly superior and she cannot tell me that aborting this baby will increase my chances of survival. She says that if I wasn't pregnant, it would be much easier for her, but there is no good reason for me not to be. I start crying and tell her that I am faced with every mother's worst nightmare. Choosing between herself and her child. If we were dealing with Miles, the choice would be clear. I would give up my life in a heartbeat for him. And even though Junior Jr. isn't with us yet and can't survive without me, I already see him as my next Miles and simply don't think I'll be able to live after an abortion.
And that's how Boris and I make our decision. We had every piece of information possible, but it came down to what was in our hearts. I decide that I'm going to have faith in my doctors and my body and together we're going to cure me and protect my next son (no longer "Junior Jr." He's now "Miracle"). I get my first night's sleep in over 3 weeks.
Friday, September 5, 2008
Surgery
I go to see my internist's partner for my preoperative examination. He has to ask me a series of required questions about my health. I answer "no" to the laundry list of questions about whether I have or have ever had any problems with my eyes, allergies, heart, bleeding, kidneys, stomach and every other part of my body. He looks up and tells me I'm very healthy. "Indeed," I tell him. "Aside from cancer, I'm fine. A model of health, really."
On September 2, Boris and I pull up to the Breast Center at Cedars at 730am. My surgery is scheduled for 900am. I'm already crying as I'm filling out paperwork. A nurse who butchers my last name calls me from the waiting room and takes me to get changed into my gown. She leads me to a bed in the recovery area of the surgery center and prepares my i.v. I am the worst patient, hate needles and cringe as the needle slips into my hand. I feel the icy liquid running up my arm and get nauseous. Gross. A volunteer comes to congratulate me on my pregnancy. I cry as she asks me how far along I am. My voice cracks as I tell her I'm 13 weeks.
I hear a baby crying and start sobbing as I see several nurses wheeling a crib into the recovery room. I think that the only thing worse than being pregnant with cancer is a sick baby.
Boris joins me in the recovery room and the anesthesiologist introduces himself. He says "so you're 14 months pregnant. My wife is pregnant, too." I try not to be bitchy as I correct him about my pregnancy and inform that a pregnancy is 10 months long, not 14. And unless his wife has cancer, I don't really care that she's pregnant. We have nothing in common. He talks to us about the risks of anesthesia to the fetus. I cry. When Dr. Funk comes to my bed she says, "tears already?" Ummmm - yes, tears already. I'm fucking pregnant with cancer. You are about to slice me open and take out lymph nodes that I need. Wouldn't you cry? She tells Boris and I that because she's removing so many lymph nodes, I'm going to have a drain put in and gives us brief instructions about the drain. I say goodbye to Boris and am wheeled away to the operating room. I remind Dr. Funk that I do not want lymphodema (permanent swelling caused by removal of the lymph nodes). She says that there's only a 1% chance of getting it - not to worry. I have to remind her that I've been on the wrong end of every 1% chance so far - so that's not reassuring. "Just do a good job," I say. The anesthesiologist tells me he's going to place a mask over my face and that's the last thing I remember.
I wake up in the same spot of the recovery room. Boris is sitting next me. Although I'm groggy and exhausted, I ask him whether the cancer has spread. He nods. I sob. He says that Dr. Funk told him that at least 2 lymph nodes look cancerous and we won't know the full extent of the cancer for 2 more days. We go home. I'm too tired and depressed to speak. Boris and I have to discuss the baby. Everyone was so positive that the cancer hadn't spread neither one of us actually thought we'd have to discuss an abortion. Even though I know this is now a strong possibility, I only take 2 Vicodin after surgery. I'd rather suffer excruciating pain than put anything possibly harmful to him in my body (um, chemo aside).
I hurt. I can't lift my arm. Or Miles. My left breast is black and blue and bloody looking. I have a disgusting drain hanging out of my armpit. I'm helpless. Boris has to help me shower and dry off. I am reminded of the first time I spent the night at his house 5 years ago. We showered together in the morning and he washed my whole body right down to my feet. This time though, it's not romantic. But it's just as tender. He changes my drain for me every morning and night. He's not phased and so loving. I keep apologizing to him because I feel like I'm ruining his life. Who could have imagined that 2 years after exchanging vows and promising to love each other through sickness and health, that we would be in this situation. Me helpless. And sick. We may have to abort a wanted child and never be able to have more. Boris reassures me over and over again that he doesn't care whether we have more children or whether I'm bald or have breasts. He just wants me to live. He tells me that he loves my brain. I tell him my brain is encased in a head full of thick, curly hair and rests just above 2 giant, perky breasts. He says, "Sharon, there are way hotter pieces of ass than you and I'm not attracted to any of them." He says "Just fight and win." And to be nice to him. He says "the next time you're about to make some snide comment, remember that I don't care what you look like, I just care about how you treat me." And he means it.
Two days later we go to see Dr. Funk. The cancer has spread to 5 lymph nodes but one node had such microscopic amounts of cancer that she's not counting it. One node was giant, twice as big as my tumor, which thankfully was small. The other nodes have very small traces of cancer in them. "That's good news," Dr. Funk says. But without full scans and knowing with certainty whether the cancer has metastasized, I'm stage IIIA. The statistics are bad. Even with chemotherapy and a mastectomy, I have a 44% chance of recurrence and 40% chance of death within 10 years. It's the rudest thing I've ever heard. "How the hell is that possible," I ask? "Why bother if I'm going to die in 10 years." She doesn't respond.
Boris and many friends keep telling me to focus on treatment, not statistics. They're just averages. But I don't know how to ignore them. I wonder if it's better to just die now so that Miles has no memory of me. I think that's better than dying in a few years and putting him through hell. My whole life I jump to the worst case scenario and usually see the negative before the positive. So I am dwelling on the 40% instead of the 60%. Every time someone says you have a better chance of living than dying, I remind them that I have a really high chance of dying. I wish they would stop telling me I'm going to be okay because really, how the fuck do they know? No one expected me to have cancer, or cancer that had spread. But I do and it did.
On September 2, Boris and I pull up to the Breast Center at Cedars at 730am. My surgery is scheduled for 900am. I'm already crying as I'm filling out paperwork. A nurse who butchers my last name calls me from the waiting room and takes me to get changed into my gown. She leads me to a bed in the recovery area of the surgery center and prepares my i.v. I am the worst patient, hate needles and cringe as the needle slips into my hand. I feel the icy liquid running up my arm and get nauseous. Gross. A volunteer comes to congratulate me on my pregnancy. I cry as she asks me how far along I am. My voice cracks as I tell her I'm 13 weeks.
I hear a baby crying and start sobbing as I see several nurses wheeling a crib into the recovery room. I think that the only thing worse than being pregnant with cancer is a sick baby.
Boris joins me in the recovery room and the anesthesiologist introduces himself. He says "so you're 14 months pregnant. My wife is pregnant, too." I try not to be bitchy as I correct him about my pregnancy and inform that a pregnancy is 10 months long, not 14. And unless his wife has cancer, I don't really care that she's pregnant. We have nothing in common. He talks to us about the risks of anesthesia to the fetus. I cry. When Dr. Funk comes to my bed she says, "tears already?" Ummmm - yes, tears already. I'm fucking pregnant with cancer. You are about to slice me open and take out lymph nodes that I need. Wouldn't you cry? She tells Boris and I that because she's removing so many lymph nodes, I'm going to have a drain put in and gives us brief instructions about the drain. I say goodbye to Boris and am wheeled away to the operating room. I remind Dr. Funk that I do not want lymphodema (permanent swelling caused by removal of the lymph nodes). She says that there's only a 1% chance of getting it - not to worry. I have to remind her that I've been on the wrong end of every 1% chance so far - so that's not reassuring. "Just do a good job," I say. The anesthesiologist tells me he's going to place a mask over my face and that's the last thing I remember.
I wake up in the same spot of the recovery room. Boris is sitting next me. Although I'm groggy and exhausted, I ask him whether the cancer has spread. He nods. I sob. He says that Dr. Funk told him that at least 2 lymph nodes look cancerous and we won't know the full extent of the cancer for 2 more days. We go home. I'm too tired and depressed to speak. Boris and I have to discuss the baby. Everyone was so positive that the cancer hadn't spread neither one of us actually thought we'd have to discuss an abortion. Even though I know this is now a strong possibility, I only take 2 Vicodin after surgery. I'd rather suffer excruciating pain than put anything possibly harmful to him in my body (um, chemo aside).
I hurt. I can't lift my arm. Or Miles. My left breast is black and blue and bloody looking. I have a disgusting drain hanging out of my armpit. I'm helpless. Boris has to help me shower and dry off. I am reminded of the first time I spent the night at his house 5 years ago. We showered together in the morning and he washed my whole body right down to my feet. This time though, it's not romantic. But it's just as tender. He changes my drain for me every morning and night. He's not phased and so loving. I keep apologizing to him because I feel like I'm ruining his life. Who could have imagined that 2 years after exchanging vows and promising to love each other through sickness and health, that we would be in this situation. Me helpless. And sick. We may have to abort a wanted child and never be able to have more. Boris reassures me over and over again that he doesn't care whether we have more children or whether I'm bald or have breasts. He just wants me to live. He tells me that he loves my brain. I tell him my brain is encased in a head full of thick, curly hair and rests just above 2 giant, perky breasts. He says, "Sharon, there are way hotter pieces of ass than you and I'm not attracted to any of them." He says "Just fight and win." And to be nice to him. He says "the next time you're about to make some snide comment, remember that I don't care what you look like, I just care about how you treat me." And he means it.
Two days later we go to see Dr. Funk. The cancer has spread to 5 lymph nodes but one node had such microscopic amounts of cancer that she's not counting it. One node was giant, twice as big as my tumor, which thankfully was small. The other nodes have very small traces of cancer in them. "That's good news," Dr. Funk says. But without full scans and knowing with certainty whether the cancer has metastasized, I'm stage IIIA. The statistics are bad. Even with chemotherapy and a mastectomy, I have a 44% chance of recurrence and 40% chance of death within 10 years. It's the rudest thing I've ever heard. "How the hell is that possible," I ask? "Why bother if I'm going to die in 10 years." She doesn't respond.
Boris and many friends keep telling me to focus on treatment, not statistics. They're just averages. But I don't know how to ignore them. I wonder if it's better to just die now so that Miles has no memory of me. I think that's better than dying in a few years and putting him through hell. My whole life I jump to the worst case scenario and usually see the negative before the positive. So I am dwelling on the 40% instead of the 60%. Every time someone says you have a better chance of living than dying, I remind them that I have a really high chance of dying. I wish they would stop telling me I'm going to be okay because really, how the fuck do they know? No one expected me to have cancer, or cancer that had spread. But I do and it did.
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