Of late, Miles is obsessed with firefighters. It all started when my aunt bought him a book about firefighters for his birthday. We read the book several times a day for weeks. We still read the book often. And now we dress up like the firefighters and put out "fires" all over the house. Miles runs around with a plastic ax yelling "Mattie (our cat), I'm rescuing you from the fire! The fire is really, really dangerous because it's really, really hot!" Other times he rescues Baron or Boris or me. One night before bed Miles and I read the firefighter book and I ask Miles if he'd like to visit the fire station in the morning. His eyes widen. "I want to go now!" he yells. "The firefighters are sleeping now, Miles," I tell him. "But we can go in the morning when they're awake." "Do they have an ax?" Miles wants to know. I tell him that he can ask the firefighters tomorrow. He has other questions for them like "what color is their bed, what did they eat for dinner, where do they sleep, do they have a fire hydrant, and do they have a kitchen."
I wake up in the morning and discover that Laura may have visited. I won't know for sure until I get my hormone levels tested and this time I'm not getting my hopes up. Miles wakes up yelling "I want to go to the firefighters!" I wait until it's an acceptable hour and call the station. We're free to come. Miles is ecstatic. Firefighter Doug greets us and amazingly spends an hour indulging Miles. He answers every question (including "do you pee on a potty?") and opens every door, drawer and compartment Miles asks about. We also meet a paramedic, watch an ambulance respond to a call and a slew of firefighters stock their truck. Miles is beside himself with excitement. After an hour I convince him that firefighter Doug has to go put out fires and we leave. At lunch with Baron, Miles recounts his morning. He asks me what sounds like "are you noisy to Baron?" I'm not sure what he's talking about so I ask if he's remembering when the ambulance siren turned on and it was really noisy. "No," Miles says and repeats what sounds like "are you noisy to Baron?" "I'm so sorry monkey, but I'm not sure what you're asking me," I say. "Are you giving Baron food from your body?" Miles asks. I'm momentarily stunned that a) he's asking me if I'm nursing Baron, b) he knows what nursing is and c) he can define a word when I don't understand him. "Are you asking me if I'm nursing Baron, Miles?" I ask. He nods. I tell him that I nursed Baron when he was very little. And I tell him that I nursed him when he was a baby. And I tell him that my new boobies don't make milk so I can't nurse Baron anymore and that makes me really sad. "Do you want to nurse me?" he asks. I smile. "I would love to Miles but my new boobies can't make milk. He thinks for a minute and then asks "do you want food from my body?" I smile again and respond "yes, Miles. I would love that." He seems satisfied and goes on eating and telling Baron about his adventures with firefighter Doug and paramedic Trevor.
I ask Miles how he knows what nursing is and he says "from the book where daddy and Miles make a salad." I think for a minute and realize what he's talking about. Before Baron was born, Boris and I would read a book to Miles about bringing a new baby home. The book has no words, just pictures. In one of the pictures, the mommy is nursing the new baby while the older son and daddy cook. The picture has lots of vegetables, which Miles apparently thinks is salad. I just worship him.
I get up to make a bottle for Baron. I'm so sad I can't nurse him. I am so thankful though that I have amazing women in my life who are fortunate to be nursing their little ones and who provide Baron with enough breast milk for almost all of his bottles.
The next day I have my round 2 appointment with Dr. Karlan. Miles wants to come even though I tell him the doctor doesn't have candy. We're right on time. The doctor isn't. Even though I'm shuffled off to a room right away, I still wait 45 minutes. If Miles wasn't with me I would have gone ballistic. Instead, I read "Green Eggs and Ham"to Miles 42 times. When he's about to go ballistic, I open the door so we can take a walk down the hallway. Dr. Karlan is outside. "We're going to take a walk since we've been waiting 45 minutes and our tolerance has run out," I say. "Has anyone come in to talk to you yet?" she asks. I shake my head no. "Would you like a blue balloon?" she asks Miles. "I want it!" he responds. Dr. Karlan asks one of her attendees to get Miles a balloon. She introduces herself and follows us back into our room. She says she needs some information to update my file. I'm asked the same annoying questions I get asked every time I see a doctor. I don't understand why I have to answer each time, but whatever. I try to be civil so Miles doesn't think I'm a raging bitch. I do however, tell the attendee that I'm a new patient of Dr. Karlan's and don't know how she operates. "Is it normal that she doesn't call with results from ultrasounds? I'm just wondering what to expect," I say. "Oh. You didn't receive your results?" she asks. "Nope," I answer. And continue "I called and asked Dr. Karlan to call me with results, but she never called. Again, just wondering if she doesn't call people back or if I don't get test results or what." She's not sure what to say so she gives some lame explanation about how she's the attendee and can't really answer that.
Dr. Karlan walks in during the explanation and says that my results are normal. "You did have that cyst on your left ovary but it's common during the menstrual cycle." I haven't had my period in over a year and have no idea what cyst she's talking about. I ask her a zillion questions until I'm satisfied that the cyst really is nothing. She wants to draw blood to test my hormone levels to see if they're normal but I refuse and tell her I have scans at Tower in 2 weeks and will have them test me so I only have to suffer through one blood draw. Before she examines me she asks her attendee to blow up the blue balloon for Miles who needs to get out of the examination room asap. The attendee is instantly turned into entertainment for Miles as she starts blowing up a blue balloon (a.k.a. a latex glove) and drawing faces on the fingers. Dr. Karlan examines me and says everything looks good. She apparently sees signs of "estrogenization" which means my ovaries are coming back to life (which explains why most of my menopausal side effects have thankfully subsided).
Miles and I leave as fast as possible. I want to get him to the park asap but he instructs me to park the car in front a construction site across from the hospital. There are several diggers and loaders in action and a parade of dump trucks. We get out of the car to watch. He runs back and forth pointing and shouting "look mom! It's an excavator! Look! It's a loader! Look mom! Do you see it!?" It also must have been trash day for the area because we see 10 garbage trucks drive by. Miles doesn't even know what to do with himself he's so excited. I spend the next 30 minutes watching him have the best time ever.
On the drive home we discuss Thanksgiving. "Will we have a feast?" he asks. Ever since his first meal, Miles is obsessed with food. He'll eat just about anything and seriously has food radar. No matter where he is, if anyone is eating anywhere in the vicinity he races over to them and asks what they are eating usually followed by "can I taste it?" We talk about all the delicious food we'll eat. And I tell him Thanksgiving is a day for us to remember all of the things we have to be thankful for. "I'm thankful for you and Baron and daddy and I'm so thankful that I'm feeling good," I tell him. "What are you thankful for, Miles? What makes you happy?" I ask him. Miles has long think and then carefully responds "food."
Monday, November 23, 2009
Tuesday, November 10, 2009
The Waiting Game
It's been almost 7 months since I gave birth to Baron. So it's been almost 7 months since a doctor has seen my ovaries. I have an appointment to see Dr. Karlan, an obgyn oncologist and have a transvaginal ultrasound immediately afterwards. I have an early morning appointment so I can get back to the boys as fast as possible. I get to Cedars on time (a feat!) and check in. I sit as far away from other people as possible. I wait. 10 minutes go by then 15 then 20. After 30 minutes I track down one of Dr. Karlan's nurses and ask how much longer I'm going to have to wait. I inform her that I have an ultrasound scheduled in 30 minutes. She thinks I'll make it but still doesn't have an available room for me. I am so fucking over waiting for doctors. I wait for another 15 minutes and then tell the nurse I have to go. Dr. Karlan is in the hallway. She wants to know if I can come back in the afternoon. I want to cry a little I'm so mad. "No I can't come back in the afternoon," I say. "I'll just come back in 6 months," I tell her. "You really shouldn't wait that long. Make an appointment next week. Come at 8:30. It's my first appointment and there shouldn't be a wait. I was putting out fires all morning." As the nurse walks me through the series of hallways that connect the cancer center to the imaging center I tell her that perhaps an hour wasted for her isn't a big deal but since I spent the past year trying not to die and missing time with my babies, it's a really big deal for me. "It's a big deal and I'm so sorry," she says.
Thankfully I only wait 5 minutes before the ultrasound technician comes to get me. She leads me to the changing room and hands me a gown. I change and lay down on the table. The technician asks if I've had an ultrasound before. I have. She asks how old my kids are and I tell her. She wants to know why I'm having one now. "Because I had cancer," I say. "Ovarian cancer?" she asks. "No. Breast cancer. But I'm BRCA1 positive so the doctors monitor my ovaries every 6 months," I tell her. I can see her doing the math in her head. "I was pregnant when I was diagnosed," I say. She nods and smiles nervously. The ultrasound takes about 45 minutes. The technician says that the doctor will have my results within 24 hours. I get up, get dressed and before I leave, I retrace my steps to the cancer center and find Dr. Karlan. I ask if she can see me before I leave. Sadly she can't. I'm super annoyed. My tolerance level for most things b.c. (before cancer) was pretty slim and p.c. (post cancer) it's non-existent. I rush home to the boys.
2 days later I call Dr. Karlan's office to schedule my round 2 appointment. I tell the woman on the phone that I need the first available 8:30 appointment. We set the appointment for the day before Thanksgiving. I also ask her who I need to speak to to get the results from my ultrasound. They should be ready and no one has called me. Rude. She says she'll have Dr. Karlan call me. She doesn't. As I hang up the phone I hear Miles telling his monkey blanket that he has to have an ultrasound. He also tells my parents, Boris and few strangers that "mommy's having an ultrasound." Part of me wonders if no news is good news? Or like with a pap-smear they'll only call me if something is wrong? Or is it like cancer where they only call you if nothing is wrong and make you come in for in person news that you're fucked?
Since my appointment is only a week away, I decide to just wait. What could happen in a few days? Right?
Thankfully I only wait 5 minutes before the ultrasound technician comes to get me. She leads me to the changing room and hands me a gown. I change and lay down on the table. The technician asks if I've had an ultrasound before. I have. She asks how old my kids are and I tell her. She wants to know why I'm having one now. "Because I had cancer," I say. "Ovarian cancer?" she asks. "No. Breast cancer. But I'm BRCA1 positive so the doctors monitor my ovaries every 6 months," I tell her. I can see her doing the math in her head. "I was pregnant when I was diagnosed," I say. She nods and smiles nervously. The ultrasound takes about 45 minutes. The technician says that the doctor will have my results within 24 hours. I get up, get dressed and before I leave, I retrace my steps to the cancer center and find Dr. Karlan. I ask if she can see me before I leave. Sadly she can't. I'm super annoyed. My tolerance level for most things b.c. (before cancer) was pretty slim and p.c. (post cancer) it's non-existent. I rush home to the boys.
2 days later I call Dr. Karlan's office to schedule my round 2 appointment. I tell the woman on the phone that I need the first available 8:30 appointment. We set the appointment for the day before Thanksgiving. I also ask her who I need to speak to to get the results from my ultrasound. They should be ready and no one has called me. Rude. She says she'll have Dr. Karlan call me. She doesn't. As I hang up the phone I hear Miles telling his monkey blanket that he has to have an ultrasound. He also tells my parents, Boris and few strangers that "mommy's having an ultrasound." Part of me wonders if no news is good news? Or like with a pap-smear they'll only call me if something is wrong? Or is it like cancer where they only call you if nothing is wrong and make you come in for in person news that you're fucked?
Since my appointment is only a week away, I decide to just wait. What could happen in a few days? Right?
Sunday, November 8, 2009
The First Cut is the Deepest
I haven't been to a hair salon in over a year. It's sort of nice given how expensive my haircuts are and how long I inevitably wait for my stylist (which if you know what my hair looked like pre-cancer is weird given that my idea of a good haircut is that I don't know its happened). My hair couldn't look worse the day of my first haircut post-cancer. I went to bed the night before with wet hair sans product. I have crazy bed head and it's kindof an afro. Even though I'm scared to cut one hair on my head, I decide that perhaps a cut will make the grow out a little more attractive. I sit in the waiting area across from a woman with shoulder length luxurious hair. I'm so jealous. I wait. A second woman sits down across from me who looks incredibly familiar. She has a buzz cut that's bleached white. She looks up at me and smiles. I assume that everyone with short hair has had cancer and I almost ask her if she's fresh out of chemo. But thankfully my internal sensor reminds me that some women buzz their hair off on purpose and I just smile back. I wait some more. And some more. After almost an hour of waiting I'm over getting a haircut and remember why I hated having to do it in the first place (at least at my salon). I walk past my stylist who clearly has no idea who I am at first and ask his assistant (yes, he has an assistant) how much longer I have to wait.
I'm ushered to the back where I get my hair washed and my head massaged. Heaven! Finally I sit down at the sylist's station. I wait. And I wait some more. And then I get up and ask another stylist how much fucking longer I'm going to be sitting here. "I've been waiting for an hour," I tell him. My stylist doesn't hurry over but smiles as he approaches. "You're hair is cute," he says. "Have fun with it. Put some bows in it. And headbands." I don't even know how to respond. Me with a bow? I picture a bald baby with a bow taped on her head so people know she's a girl. He starts snipping. He knows I want my hair to get long as soon as humanly possible so the trim takes about 2 minutes. He does thin it out quite a bit since it's so thick. He blows it straight and styles it so that I have tiny bangs.
When I get home I'm greeted by Baron and pick him up. He stares at my forehead and smiles. He smiles at my bangs all afternoon. I'm a little less afro-ish, so that's good. The stylist tells me to stay away until I hate my hair and can't take it anymore. Sometimes I think I feel like that every day, but I know what he means. In the meantime, I try to find products that work for my new do. My old products...not so much. I've found that Boris' hair wax on a stick works best. A little scary that my husband and I now use the same deodorant and hair products, but whatever.
It's certainly better than the alternative.
I'm ushered to the back where I get my hair washed and my head massaged. Heaven! Finally I sit down at the sylist's station. I wait. And I wait some more. And then I get up and ask another stylist how much fucking longer I'm going to be sitting here. "I've been waiting for an hour," I tell him. My stylist doesn't hurry over but smiles as he approaches. "You're hair is cute," he says. "Have fun with it. Put some bows in it. And headbands." I don't even know how to respond. Me with a bow? I picture a bald baby with a bow taped on her head so people know she's a girl. He starts snipping. He knows I want my hair to get long as soon as humanly possible so the trim takes about 2 minutes. He does thin it out quite a bit since it's so thick. He blows it straight and styles it so that I have tiny bangs.
When I get home I'm greeted by Baron and pick him up. He stares at my forehead and smiles. He smiles at my bangs all afternoon. I'm a little less afro-ish, so that's good. The stylist tells me to stay away until I hate my hair and can't take it anymore. Sometimes I think I feel like that every day, but I know what he means. In the meantime, I try to find products that work for my new do. My old products...not so much. I've found that Boris' hair wax on a stick works best. A little scary that my husband and I now use the same deodorant and hair products, but whatever.
It's certainly better than the alternative.
Monday, November 2, 2009
Scaring My Ears
The doctor's appointments are waning. Now that I feel mostly normal, they're more of an annoyance. I have my first follow-up appointment with Dr. Botnick. My left breast, armpit and part of my back are still flaming red and painful. My left breast has definitely risen up slightly. It's not just me being crazy. Dr. Botnick confirms it. He reminds me that natural breasts are not totally even and the difference in mine isn't detectable to the human eye. Except mine, which is really the only eye that matters. I tell him I'm nervous it will only get worse when I get my final implants, but he says it won't. He thinks everything will always be fine though so I make an appointment to see Dr. Slate.
Dr. Slate has moved offices and so I have to wait longer than usual as his staff is learning the necessary procedures at the Breast Center. I had forgotten how annoying it is to be asked a slew of redundant and irrelevant questions about my medical history. But I answer them and then am led to an examination room. Dr. Slate gives me a big hug before opening up my gown. "Does the left one look a lot higher than the right?" I ask him. He pauses and then responds "I just can't get the past the color, so give me a minute." Nice. He agrees that the left breast is "slightly" higher but assures me that he can make them even during my final implant surgery. Sadly though, the fix comes from making the right side higher so I'll look even more fake than I already do. Sigh.
I notice the fakeness most when I'm exercising, which thankfully I've started doing a lot. I bounce on trampolines and run on treadmills and the boobs don't move at all. Very bizarre. I want to wear a t-shirt that says "not by choice," on it so that people don't think I'm like every other plastic L.A. girl out there. I also start working out with the most amazing trainer (Ashley Borden) who is just a goddess. She has me lifting weights and doing push ups and swears that someday soon I'll do a pull up. It feels so good to use my body again, particularly my arms, and start getting back in shape. It's often incredibly uncomfortable thanks to the rock hard expanders I'm still sporting, but it's worth it.
In the midst of feeling good, I get a bill from Dr. Phillips' office. When I spoke to his financial coordinator (or whatever the hell she's called), Valerie, after being informed a few weeks prior to surgery that he didn't accept any insurance, Valerie assured me of Dr. Phillips' fee and that I was paying in full prior to surgery so I'm super confused. And pissed. I speak to Valerie who assures me I won't get another bill. Phew. But I do. I'm livid. I go back and forth speaking to Valerie and others in Dr. Phillips' billing department trying to figure out what the fuck is going on. I'm told that there was an error (euphemistically called a "misunderstanding,") and I owe Dr. Phillips a shitload of money. When one woman in the billing office tells me she'll speak to the powers at be and let me know how to proceed, I respond "let me tell you how I will proceed. I am an incredibly sympathetic plaintiff. I'm young, cute, recently bald and pregnant, informed 2 weeks before massive, life changing surgery that my doctor doesn't take insurance, induced by one of his staff members to use him based on his fee and then hit up for money I never knew about or consented to." Silence. And then a message from yet another person in the billing department informing me that my balance is zero. At last!
Good thing that Boris and I are on our way to San Francisco for a fuck cancer celebration weekend. We have planned our weekend around eating at restaurants I've been wanting to try - most of them serving cancer inducing foods. In our very chic hotel room (thank you Debbie) the first thing we see is a big card in the sitting area that says "fuck cancer." I can't believe anyone got the hotel staff to write that. It's a beautiful and touching card, accompanied by champagne, chocolate covered strawberries and a cheese plate (hurray!) from Nitasha and Kulmeet and Rachel, another good friend who lives in San Francisco. Such a great start to the weekend which was wonderful. Boris and I did spend half the trip missing the boys, but we had a great time.
We return to shocking news. One of my pregnant with cancer friends who finished chemo about a year ago has a recurrence. She needs more surgery and possibly more chemo. I want to die for her. And I'm terrified for me, too. Selfish, I know, but I can't help it. I know that triple negative tumors (which she also had) have such a high recurrence rate, but never really think it's coming back. We've all suffered enough. And I know that I'm not her and that just because she has a recurrence doesn't mean that I'm going to, but I'm terrified nonetheless. Just another reminder that I have many, many years to get through before I'm truly done with this shit.
We also happily return to our boys who are so insanely cute and amazing it's mind boggling. My baby Baron is already standing up and trying to walk. What!? He's gifted for sure. He spends a good portion of his day pulling up on anything he can get his hands on (including me) and then swaying back and forth occasionally moving a foot in the process. He smiles and drools and claps with excitement. And I want to write a book called "Amazing Things Miles Says," because he is just...well, amazing. As I'm putting him to bed one night we sit snuggled up on his chair. I kiss his arms and head and he says "don't kiss me, mom (sadly, I'm no longer mommy). I'll kiss you." And he dots my arm and face with tiny kisses. I tell him that I love it when he kisses me and he smiles. I kiss him again and he says "I love you kissing me, mom." I melt. Recently while listening to the radio in the car, he said "change the song, mom. It's scaring my ears."
I wish I could just change the channel when I hear something that scares my ears. Like recurrences and shitty statistics. Instead I listen to the louder and beautiful sounds of my boys and my internal voice that doesn't believe this could ever happen again.
Dr. Slate has moved offices and so I have to wait longer than usual as his staff is learning the necessary procedures at the Breast Center. I had forgotten how annoying it is to be asked a slew of redundant and irrelevant questions about my medical history. But I answer them and then am led to an examination room. Dr. Slate gives me a big hug before opening up my gown. "Does the left one look a lot higher than the right?" I ask him. He pauses and then responds "I just can't get the past the color, so give me a minute." Nice. He agrees that the left breast is "slightly" higher but assures me that he can make them even during my final implant surgery. Sadly though, the fix comes from making the right side higher so I'll look even more fake than I already do. Sigh.
I notice the fakeness most when I'm exercising, which thankfully I've started doing a lot. I bounce on trampolines and run on treadmills and the boobs don't move at all. Very bizarre. I want to wear a t-shirt that says "not by choice," on it so that people don't think I'm like every other plastic L.A. girl out there. I also start working out with the most amazing trainer (Ashley Borden) who is just a goddess. She has me lifting weights and doing push ups and swears that someday soon I'll do a pull up. It feels so good to use my body again, particularly my arms, and start getting back in shape. It's often incredibly uncomfortable thanks to the rock hard expanders I'm still sporting, but it's worth it.
In the midst of feeling good, I get a bill from Dr. Phillips' office. When I spoke to his financial coordinator (or whatever the hell she's called), Valerie, after being informed a few weeks prior to surgery that he didn't accept any insurance, Valerie assured me of Dr. Phillips' fee and that I was paying in full prior to surgery so I'm super confused. And pissed. I speak to Valerie who assures me I won't get another bill. Phew. But I do. I'm livid. I go back and forth speaking to Valerie and others in Dr. Phillips' billing department trying to figure out what the fuck is going on. I'm told that there was an error (euphemistically called a "misunderstanding,") and I owe Dr. Phillips a shitload of money. When one woman in the billing office tells me she'll speak to the powers at be and let me know how to proceed, I respond "let me tell you how I will proceed. I am an incredibly sympathetic plaintiff. I'm young, cute, recently bald and pregnant, informed 2 weeks before massive, life changing surgery that my doctor doesn't take insurance, induced by one of his staff members to use him based on his fee and then hit up for money I never knew about or consented to." Silence. And then a message from yet another person in the billing department informing me that my balance is zero. At last!
Good thing that Boris and I are on our way to San Francisco for a fuck cancer celebration weekend. We have planned our weekend around eating at restaurants I've been wanting to try - most of them serving cancer inducing foods. In our very chic hotel room (thank you Debbie) the first thing we see is a big card in the sitting area that says "fuck cancer." I can't believe anyone got the hotel staff to write that. It's a beautiful and touching card, accompanied by champagne, chocolate covered strawberries and a cheese plate (hurray!) from Nitasha and Kulmeet and Rachel, another good friend who lives in San Francisco. Such a great start to the weekend which was wonderful. Boris and I did spend half the trip missing the boys, but we had a great time.
We return to shocking news. One of my pregnant with cancer friends who finished chemo about a year ago has a recurrence. She needs more surgery and possibly more chemo. I want to die for her. And I'm terrified for me, too. Selfish, I know, but I can't help it. I know that triple negative tumors (which she also had) have such a high recurrence rate, but never really think it's coming back. We've all suffered enough. And I know that I'm not her and that just because she has a recurrence doesn't mean that I'm going to, but I'm terrified nonetheless. Just another reminder that I have many, many years to get through before I'm truly done with this shit.
We also happily return to our boys who are so insanely cute and amazing it's mind boggling. My baby Baron is already standing up and trying to walk. What!? He's gifted for sure. He spends a good portion of his day pulling up on anything he can get his hands on (including me) and then swaying back and forth occasionally moving a foot in the process. He smiles and drools and claps with excitement. And I want to write a book called "Amazing Things Miles Says," because he is just...well, amazing. As I'm putting him to bed one night we sit snuggled up on his chair. I kiss his arms and head and he says "don't kiss me, mom (sadly, I'm no longer mommy). I'll kiss you." And he dots my arm and face with tiny kisses. I tell him that I love it when he kisses me and he smiles. I kiss him again and he says "I love you kissing me, mom." I melt. Recently while listening to the radio in the car, he said "change the song, mom. It's scaring my ears."
I wish I could just change the channel when I hear something that scares my ears. Like recurrences and shitty statistics. Instead I listen to the louder and beautiful sounds of my boys and my internal voice that doesn't believe this could ever happen again.
Thursday, October 22, 2009
Laura's Not Visiting
Candace Silverman was my best friend in the 7th grade. It didn't take long before we spent tons of time together. So much time that soon we were on the same menstrual cycle. Candace liked to have code words and phrases for everything and so she decided that when we got our periods we should say "Laura's visiting." Random. And no one knew what the hell we were talking about so we thought we were brilliant. Laura's visits were always a nuisance. I was crampy and uncomfortable and am pretty sure I said things like "I can't wait for menopause." And so I find it ironic that now I am ecstatic that Laura may be visiting.
I wake up feeling crampy and am overjoyed when I notice some spotting. I call Dr. McAndrew immediately and ask her how I'll know whether it's my period or not. And I tell Boris that if it is my period, I'm having eggs harvested tomorrow. "Let's just take things one step at a time," he says. Dr. McAndrew tells me the only way to know whether the spotting is actually a period is to have my hormone levels tested (i.e., a blood draw). I sprint to her office and willingly extend my vein to the nurse. "How soon will you have results?" I ask. I'm told that I can call the nurse tomorrow.
Exactly 24 hours later I excitedly call the nurse. My spotting has pretty much stopped, but I'm still happy and confident. Until she reads me my results. The numbers are better than the previous time they were checked, but I'm still menopausal. Fuck. I know it's only been 3 months since my last chemo treatment and most women's periods come back within 6 months to a year, but still. I've already made it through the worst of menopause. Hot flashes every second, bitchiness (more than normal), zero sex drive and just generally feeling like an old woman. But I want Laura to visit. Now.
Just before my next appointment with Dr. McAndrew I start spotting again. It's been 3 weeks since Laura didn't visit. Since my hormone levels were tested so recently the nurse doesn't check them again. After waiting an hour (so annoying!) I tell Dr. McAndrew that I'm spotting again (I also tell her nurse that I can't wait hours each time I come to the office so from now on, I'm going to call her and she'll tell me how late Dr. McAndrew is running and when I should actually come in). Dr. McAndrew says the spotting is a good sign and that hormone levels can change so fast. She says that the spotting may be my ovaries waking up, but to give my body time to heal, rebuild and regain strength. "You're barely 4 months out from chemo," she says. "Many people still suffer from chemo side effects after 4 months." I probably am too (in fact my eyelashes which were finally long and thick recently broke off and are growing back. Again.). We schedule my next round of Zometa and she tells me again that as I'm getting closer to being able to get pregnant with my daughter (she swears my period will come back), I'll stop getting Zometa. She says there shouldn't be any issues with with having Zometa in my system. I hope. And we schedule my next round of scans. Generally, she likes to wait 9-12 months between scans to avoid too much radiation, but when I tell her how terrified of a recurrence I am (who isn't!?), she says that we should schedule my scans in December, which is 9 months from last set of scans.
Baron will be 9 months old then. I don't know where the time has gone. He's already standing up and trying to walk and saying "dadadada." Rude. I just smile at him and say "mamama."
So for now I wait for scans. And a report that they're clear. And I wait and hope that Laura will visit soon.
I wake up feeling crampy and am overjoyed when I notice some spotting. I call Dr. McAndrew immediately and ask her how I'll know whether it's my period or not. And I tell Boris that if it is my period, I'm having eggs harvested tomorrow. "Let's just take things one step at a time," he says. Dr. McAndrew tells me the only way to know whether the spotting is actually a period is to have my hormone levels tested (i.e., a blood draw). I sprint to her office and willingly extend my vein to the nurse. "How soon will you have results?" I ask. I'm told that I can call the nurse tomorrow.
Exactly 24 hours later I excitedly call the nurse. My spotting has pretty much stopped, but I'm still happy and confident. Until she reads me my results. The numbers are better than the previous time they were checked, but I'm still menopausal. Fuck. I know it's only been 3 months since my last chemo treatment and most women's periods come back within 6 months to a year, but still. I've already made it through the worst of menopause. Hot flashes every second, bitchiness (more than normal), zero sex drive and just generally feeling like an old woman. But I want Laura to visit. Now.
Just before my next appointment with Dr. McAndrew I start spotting again. It's been 3 weeks since Laura didn't visit. Since my hormone levels were tested so recently the nurse doesn't check them again. After waiting an hour (so annoying!) I tell Dr. McAndrew that I'm spotting again (I also tell her nurse that I can't wait hours each time I come to the office so from now on, I'm going to call her and she'll tell me how late Dr. McAndrew is running and when I should actually come in). Dr. McAndrew says the spotting is a good sign and that hormone levels can change so fast. She says that the spotting may be my ovaries waking up, but to give my body time to heal, rebuild and regain strength. "You're barely 4 months out from chemo," she says. "Many people still suffer from chemo side effects after 4 months." I probably am too (in fact my eyelashes which were finally long and thick recently broke off and are growing back. Again.). We schedule my next round of Zometa and she tells me again that as I'm getting closer to being able to get pregnant with my daughter (she swears my period will come back), I'll stop getting Zometa. She says there shouldn't be any issues with with having Zometa in my system. I hope. And we schedule my next round of scans. Generally, she likes to wait 9-12 months between scans to avoid too much radiation, but when I tell her how terrified of a recurrence I am (who isn't!?), she says that we should schedule my scans in December, which is 9 months from last set of scans.
Baron will be 9 months old then. I don't know where the time has gone. He's already standing up and trying to walk and saying "dadadada." Rude. I just smile at him and say "mamama."
So for now I wait for scans. And a report that they're clear. And I wait and hope that Laura will visit soon.
Friday, September 25, 2009
5 1/2 Weeks
I remember that I'm not allowed to eat this morning. I have my planning session at The Center for Radiation Therapy and this time it's for real. I change into a gown and wait. Less then 5 minutes later, Jose, my favorite blood technician from Tower (no, I cannot believe that I've had enough blood draws to have a favorite technician) comes to the The Center to set up my i.v. I had told Marilyn that I am a terrible patient, hate needles and still get nauseous after 1 year of weekly blood tests. That's the 1 negative of post-cancer life without a port. Even though my left arm is usually off limits for blood draws, Jose skillfully inserts the needle into my left arm. Dr. Botnick needs to locate the lymph nodes in my chest area so that he can include them in the field of radiation. We love Jose and the i.v. is quick and relatively painless. I'm led into a large room with a massive machine. A technician whose name I can't remember introduces himself and asks me to join him at the computer in the corner. He pulls up consent forms that I'm to sign. They go through the myriad of side effects that radiation may cause. Exhaustion, nausea, localized pain, lymphedema, and many others that I try to block out. Everyone swears I need this and it outweighs all the bad shit that it could cause (including other cancers down the road).
I lie down in the machine and the technician explains what he's about to do. He's going to flush my i.v. with a radioactive material that will highlight my lymph nodes. He lifts my arm up and guides my hand to hold onto a small bar above my head. It seems to be taking forever. My fingers start to tingle and I know that soon my whole hand and arm will be numb. The technician starts fiddling with the needle and taping layers of tape over it. I don't know what on earth he could be doing but it's ridiculously painful. He tells me that due to the position of my arm, the catheter is pinched and the contrast dye can't get through. He calls in Dr. Botnick's nurse (who we love by the way). She keeps repeating that it's a great i.v. but for the position of my arm. But since it's not working in the needed position I don't think it's so great. There's more pushing and shoving and taping and untaping. Ouch and ouch and ouch! The problem is finally resolved when Marilyn pushes the needle deeper into my arm and tapes it down with yet more tape. I'm bruised for a week. Plus, now that I'm no longer the hairless wonder, getting the tape off my arm is gnarly. But finally the planning begins.
Dr. Botnick enters the room and places some sort of tape around my breast (he explained the purpose but I can't remember it now although I think it was to make a mold that I'll lie in each visit) and I take the opportunity to ask him about ultrasounds and their effectiveness in detecting breast cancer. A week ago, a friend of mine told me that her obgyn does an ultrasound of her breasts at each visit. At her last visit, her doctor detected a very small lump and insisted that she see a breast specialist immediately. My friend started asking me questions assuming that Dr. Funk did an ultra sound of my breasts at my bi-yearly visits. Suddenly I'm livid. I saw Dr. Funk for years before I found my own tumor. She only performed a manual exam even though there was an ultrasound machine in the examination room. I promptly emailed Dr. Funk writing "I'm assuming you have a good reason for not doing ultrasounds of your high risk patients. I'd like to know what it is." I still haven't received a response. But I have been asking doctors about the standard of care regarding ultrasounds. Dr. Botnick explains that it is not the standard of care here. It is in other countries, but not here. There's still some debate about its effectiveness in detection. But he says that I should have had an MRI. Now that I've been asking around, I've learned that many doctors are able to get their high risk patients' insurance companies to pay for MRIs. "You absolutely should have had one," Dr. Botnick says. There's no point in pointing fingers now, but I just don't understand why with my family history, Dr. Funk only performed manual examinations on me.
After the endless taping, the machine I'm lying in starts slowly moving around my body. My arm feels like it's about to fall off. After several more minutes, the technician tells me that he needs to mark me and then I'm done. The "marking" is a tattoo, 3 actually, that the technicians will use to ensure I'm properly placed in the machine during my radiation sessions. He takes out a small pen and draws 3 dots on my chest. 1 on each side of my left breast and 1 on the top. I feel 3 small pricks, 1 over each dot, and then I'm free to go home.
As I'm lying in bed that night, I tell Boris about my day. I'm playing with my hair as I'm talking. It's coming in thick and as far as I can tell, straight. Maybe there's a god after all? Boris tells me how great he thinks I look with short hair. "You're hair was beautiful before and I loved it, but you look so cute with short hair," he says. "Maybe you should keep it." It's so nice of him but there's no fucking way I'm keeping my hair this short. He smiles when I tell him about my tattoos and asks to see them. I can't even find 2 of them they're so tiny. "Cancer's given me a whole new wife," he jokes. "New hair, big fake boobs, tatts. Awesome." Hilarious.
I'm really scared for my first round of radiation. I don't know what it's going to do to my skin. I'm fair skinned and avoid the sun whenever possible and am nervous that my skin will react badly to what's essentially a crazy sunburn. Plus, I've been told radiation is exhausting and I honestly can't imagine being more tired than I already am and have been. I change into my gown and sit down in the waiting room. While I wait, Marilyn talks to me about the possible side effects and what I can do to ward them off. She tells me to use natural products like Dove soap. Huh? I tell her that Dove soap isn't natural at all and that the products I use are actually natural (i.e., don't have chemicals, parabens, fragrance etc.). I ask her what I'm supposed to avoid because I'm not going to start using unhealthy products now (I don't know why since I already had cancer). I'm to avoid anything with metals in them, particularly deodorant (which isn't a problem for me since I already use a natural deodorant - no I don't smell) and she gives me a "special" lotion to use often throughout the day and night. I don't know what I'm expecting, but it's just calendula cream (which I already own).
And then a young woman introduces herself as Iris and leads me to the treatment room. I lay down in another massive machine. I'm told to raise my arm above my head and hold on to a metal bar. The bed is covered with a sheet and Iris and another young woman tug the sheet back and forth for about 20 minutes. They're lining up my tattoos with 2 lasers. One is coming out of the wall and another from the ceiling. Their thin beams slice through my body. My arm is going numb again. And the technicians have to take x-rays that the doctor has to approve before treatment begins. And another doctor comes in to look at my skin and make sure it's okay for treatment (weird since I haven't started yet). He waltzes into the room saying "Hi, I'm Dr. Rose please don't move," in one breath. I don't. He says I look great and waltzes out of the room. I'm ready for treatment. A giant arm on the side of the machine starts moving. At the end of the arm is a huge metal disk covered in glass. Inside the disk are what looks like metal teeth (which I later learned are called levers) that open and close as the arm slowly rotates around my body. Each time the teeth open, a loud siren, similar to an MRI machine, sounds. The whole process takes about 5 minutes. By the end my arm feels like lead it's so heavy and numb. Iris comes into the room and thankfully tells me I can lower my arm. I get up, get dressed and go home. I slather my breast and armpit with lotion and apply it every hour. I swear my lymphedema is worse after 1 treatment. Boris thinks I'm crazy (although I'm not sure that has anything to do with cancer).
After the initial session, the others are incredibly quick (thank goodness since I go 5 days a week for the next 5 1/2 weeks). I'm back home within 30 minutes of leaving my house. The bulk of each session is spent lining up my tattoos with the lasers. After my third session, I go to change back into my clothes in the dressing room and I hear a woman crying to Marilyn. She can't believe she's sick. And then I hear her say that while her husband is very supportive, he's been complaining that she doesn't want to have sex. "I'm usually a very sexual woman," she sobs. "But I feel so terrible." I want to open the door and suggest that she tell her husband to fuck off, but I don't. I remember telling Boris that he could get a girlfriend when I was diagnosed (but I also told him that when Miles was born and he woke me up one night for nookie and I explained that he could get a girlfriend but could not, ever, ever, wake me up in the middle of the night). But I also know he never would and would never complain to me about his needs when I'm not feeling well. I feel sad for her.
I go home to find Miles on the potty pulling on his penis. "You have to point your penis in to the potty," I tell him (since he's peed on me way too many times). But he tells me that he's trying to put his penis in his belly button, and suddenly I'm not sad anymore. I laugh and laugh and am so thankful for him. But as I'm snuggling with Miles before bed he says "mommy is sad." "I'm not sad, monkey," I tell him. "Do I look sad?" "Mommy's eyes are sad," he says. And he goes on "mommy's new boobies sad." I tell him that my new boobies are very happy as am I. "You feeling better mommy?" he asks. "Yes, monkey," I assure him. "Mommy is feeling better." But I'm sad again because my poor child is constantly wondering whether I'm sad or feeling okay and every time I get dressed he asks "you going to the doctor mommy?" And now when he asks to see my "boobies" he says "mommy have new boobies?" And then he'll touch them and say "take these off" or "can I take these off?" and I have to explain that the doctor had to take my old boobies off because they had cancer but my "new boobies" get to stay. And sometimes when he plays he'll tell me that his truck isn't feeling well and he's taking it to the doctor so it can feel better. One of my friends tells me that her daughter asks if she's going to work every time she gets dressed and it's really no different but I'm not so sure. And he recently asked Boris where his nipples were and wanted to know where mine were. Eek.
The next afternoon I go to see Dr. McAndrew after radiation. I wait 2.5 hours and am livid. Apparently the patient before me had a double mastectomy after months of chemo and the pathology report showed numerous tumors. I can't imagine how horrifying that must be and I remember being the patient who Dr. Mcandrew spoke to for hours so part of me understands, but waiting on the other side of the door sucks. I just want to go home to my kids. During my check up, Dr. McAndrew tells me how fantastic I look and now that I'm not pregnant or swollen with chemo agents, she "can't believe how tiny" I am. It almost makes up for the 2.5 hour wait. I tell her about the woman I met at Dr. Slate's office who was misdiagnosed with triple negative breast cancer and is now dying of carcinoid cancer which has ravaged her body. She assures me that I should feel confident that my scans were all clear. She explains that scans detect triple negative cancer very well while carcinoid cancer is much more difficult to detect. She also assures me that I don't have carcinoid cancer. Of course there's no way to know if there's a microscopic rogue cancer cell floating around in my body, but if there was something growing, the scans would detect it. I run home after almost 3 hours to be with the boys. We play for 5 minutes before it's time for their dinner and bed.
Before I know it, I'm done with my second week of radiation. I am exhausted. Crazy, crazy exhausted. My skin starts to hurt, especially under the armpit. It makes wearing clothes uncomfortable and so I spend all of my time at home in loose t-shirts. And I'm very pink. I swear that my left breast already looks different. I make Boris look at it 78394 times a day. He swears they look the same. I also swear that I'm having difficulty breathing and so I tell Dr. Botnick when I see him at my next appointment. He has no idea why that is but it's not from radiation. He suggests perhaps it's because Los Angeles is on fire. Perhaps.
Despite my daily appointments, I feel like my life is getting back to normal. My new almost-post-cancer treatment life. When I was initially diagnosed, the only thing I worried about was cancer. And dying. But lately I feel the everyday stresses and worries creeping back into my life -- little things that I used to worry about but swore I wouldn't post-cancer, like bad naps and getting Miles into my dream preschool. One day I get a call from Dr. Botnick's office as I'm about to pull into the parking lot. The machine is broken and I'd have to wait at least 30 minutes before getting treatment. I ask them to call me 10 minutes before I should come in and drive back home. Baron woke up after a 20 minute "nap," and I want to get home. Plus Miles has been jumping out of his crib and I'm not sure he's slept at all. When I get home, I see Miles heading over the side of crib yelling "I'm awake. I need a book! I'm coming out!" I try explaining to him for the millionth time why it's unsafe for him to climb out of his crib but he doesn't believe me since he skillfully lowers himself to the ground. I try explaining to him for the billionth time why it's important for him to rest his body. He responds, "I'm not sleeping. I'm awake." No nap. I'm stressed. The boys are kindof a disaster all afternoon and I feel my impatience and frustration rising. To make matters worse, Dr. Botnick's office calls to tell me the machine still isn't working and they're not going to be able to treat me. I'll have to add on an extra session. Fuck.
Boris and I lay in bed that night and I tell him about my day. In the middle of my story about Miles hurling himself out of his crib, Boris turns to me and says "I forgot that you used to have arm hair. I think it's darker than it was." I smile and thank him for keeping things in perspective. Who cares about naps when I don't have cancer and my hair is growing back? I haven't had body hair in so long that I forget what to do with it now. And I forget that it's even there. One weekend while swimming with the boys and friends, I notice that my leg hair is back. Exciting. But it has got to go, so the next day before heading to the beach for a birthday party (otherwise the beach and I do not get along) I grab Boris' razor and quickly shave. Apparently I also forgot how to shave because I have razor burn for a week.
The next morning I take Miles to his 2 year checkup with his pediatrician. The past few appointments have been really challenging because he is so distraught at the office that the doctor can barely look at him. Before we go, I explain everything the doctor will do, just like I always do. I tell him that nothing she does will hurt except that he will get a shot at the end, which will hurt but only for a minute. He is a superstar at the appointment. He lets the doctor examine him and says "it's time for a shot?" He wails as he's pricked and the nurse asks him if he wants a lollipop. "I need it," he says. And the tears stop. That afternoon I see him heading over the side of his crib. I give him the "crib jumping isn't safe resting your body is important" explanation but he starts screaming. Baron is asleep and I can't bear the thought of 2 sleepless boys so I decide to take Miles with me to radiation even though I know I should let him scream and enforce rest time. He thinks it's the best place ever because everyone tells him how cute he is and Marilyn gives him a piece of candy (with my permission, of course - and no he doesn't come into the actual radiation room with me). He sucks on a jolly rancher for the next 45 minutes saying "what's Miles tasting?" over and over again.
And so begins the daily fight of Miles wanting to come to the doctor with me. Every time I tell him I have to go the doctor he wants to come. And have candy. I tell him that candy isn't nutritious because it has so much sugar in it, so we don't eat it very often. On several occasions I put Miles down for his nap (which he thankfully started taking again) and he asks if I'm going to the doctor. I try to ignore the question and tell him that I will be home when he wakes up. He repeats his question until I answer it. My answer was totally non-responsive so I'd object, too. One morning my mom comes to take Miles to her house for 30 minutes while I go to radiation. Miles starts crying that he wants to come to the doctor with me so I take him. He asks for a candy the second we walk through the door. I change into my gown and sit down with him in the waiting room. There's another young woman sitting across from me with her young son. He's 4. He and Miles chat while his mom and I discuss our cancer and treatment and how crazy the last year of our lives have been. As Miles is licking his candy he turns to his new friend and says "it's not tritious (aka nutritious). Too much sugar." After treatment I go to see Dr. Botnick. Miles comes with me. Dr. Botnick opens my gown to see how my skin is holding up. "Your new boobies feeling better mommy?" Miles asks. Dr. Botnick starts laughing. He asks if I hurt under my arm since the skin is so raw. It hurts like hell. But my skin otherwise looks good. I ask him if my left breast looks different than the right. I want another opinion besides Boris. He shakes his head no and rolls his eyes. Then he points to Miles and reminds me what my end goal is. To live. "You're gorgeous. I'm not just saying that. Gorgeous and charismatic and you can fix your breasts if you don't like them. But they're not different." I love him.
As my last week begins, my skin gets more red and I get more exhausted. So exhausted that I often fall asleep on the table during my 5 minutes of treatment. I'm okay if I'm in motion, but given the opportunity to lay down, I'm out. And it takes a lot to get me out of bed in the morning. I want to get up, I just can't. My skin gets so red that Dr. Botnick has to see me before treatment to make sure I can proceed. It feels like my skin is on fire. I learn that the symptoms might get worse for a few weeks after treatment ends (just my luck). But I have 2 treatments left. That's it. Then I'm done. Done. Done! Over a year of treatment and it's finally almost over. Really, really over. There's nothing else left except staying healthy and cancer free.
Miles comes with me to both of my appointments on my last day. He gets candy and draws with Marilyn while I'm treated. As we drive to my last treatment, Boris texts me writing "is it official?" I get dressed after my last treatment (fucking finally!!) and leave the dressing room. Marilyn hands me a certificate of completion which is hilarious and cheesy and very sweet. Miles and I hug and kiss and sing Yellow Submarine (his favorite new song) and go home to see Baron. At a red light I take out my phone and write to Boris "it's official."
My brother comes over with a box from Tiffany's. I'm excited. I open the box to find a silver key chain etched with "fuck cancer" on it. It's so fitting I just love it. Seth tells me that the engraver initially protested because they "don't engrave curse words," but made an exception after hearing my story.
My end goal is to live. I want to watch my amazing boys grow up. They get more amazing by the second. Baron is sitting up and crawling and babbling. We all love talking with him as he carries on conversations that make him and us chuckle and laugh. And after months of narrating everything Miles does to Baron, Miles now does the narrating. He spends all day long telling Baron what he's doing and everything he sees. It's a constant stream of "look Boonie, Miles is dancing. Boonie, that's a door. Boonie, that's a tree. See the leaves? See that Boonie? I'm playing with my trucks, Boonie. Boonie, you're near the edge. The floor is far away." It's what pulled me through the last year and will make me fight for each day of the rest of my life.
I lie down in the machine and the technician explains what he's about to do. He's going to flush my i.v. with a radioactive material that will highlight my lymph nodes. He lifts my arm up and guides my hand to hold onto a small bar above my head. It seems to be taking forever. My fingers start to tingle and I know that soon my whole hand and arm will be numb. The technician starts fiddling with the needle and taping layers of tape over it. I don't know what on earth he could be doing but it's ridiculously painful. He tells me that due to the position of my arm, the catheter is pinched and the contrast dye can't get through. He calls in Dr. Botnick's nurse (who we love by the way). She keeps repeating that it's a great i.v. but for the position of my arm. But since it's not working in the needed position I don't think it's so great. There's more pushing and shoving and taping and untaping. Ouch and ouch and ouch! The problem is finally resolved when Marilyn pushes the needle deeper into my arm and tapes it down with yet more tape. I'm bruised for a week. Plus, now that I'm no longer the hairless wonder, getting the tape off my arm is gnarly. But finally the planning begins.
Dr. Botnick enters the room and places some sort of tape around my breast (he explained the purpose but I can't remember it now although I think it was to make a mold that I'll lie in each visit) and I take the opportunity to ask him about ultrasounds and their effectiveness in detecting breast cancer. A week ago, a friend of mine told me that her obgyn does an ultrasound of her breasts at each visit. At her last visit, her doctor detected a very small lump and insisted that she see a breast specialist immediately. My friend started asking me questions assuming that Dr. Funk did an ultra sound of my breasts at my bi-yearly visits. Suddenly I'm livid. I saw Dr. Funk for years before I found my own tumor. She only performed a manual exam even though there was an ultrasound machine in the examination room. I promptly emailed Dr. Funk writing "I'm assuming you have a good reason for not doing ultrasounds of your high risk patients. I'd like to know what it is." I still haven't received a response. But I have been asking doctors about the standard of care regarding ultrasounds. Dr. Botnick explains that it is not the standard of care here. It is in other countries, but not here. There's still some debate about its effectiveness in detection. But he says that I should have had an MRI. Now that I've been asking around, I've learned that many doctors are able to get their high risk patients' insurance companies to pay for MRIs. "You absolutely should have had one," Dr. Botnick says. There's no point in pointing fingers now, but I just don't understand why with my family history, Dr. Funk only performed manual examinations on me.
After the endless taping, the machine I'm lying in starts slowly moving around my body. My arm feels like it's about to fall off. After several more minutes, the technician tells me that he needs to mark me and then I'm done. The "marking" is a tattoo, 3 actually, that the technicians will use to ensure I'm properly placed in the machine during my radiation sessions. He takes out a small pen and draws 3 dots on my chest. 1 on each side of my left breast and 1 on the top. I feel 3 small pricks, 1 over each dot, and then I'm free to go home.
As I'm lying in bed that night, I tell Boris about my day. I'm playing with my hair as I'm talking. It's coming in thick and as far as I can tell, straight. Maybe there's a god after all? Boris tells me how great he thinks I look with short hair. "You're hair was beautiful before and I loved it, but you look so cute with short hair," he says. "Maybe you should keep it." It's so nice of him but there's no fucking way I'm keeping my hair this short. He smiles when I tell him about my tattoos and asks to see them. I can't even find 2 of them they're so tiny. "Cancer's given me a whole new wife," he jokes. "New hair, big fake boobs, tatts. Awesome." Hilarious.
I'm really scared for my first round of radiation. I don't know what it's going to do to my skin. I'm fair skinned and avoid the sun whenever possible and am nervous that my skin will react badly to what's essentially a crazy sunburn. Plus, I've been told radiation is exhausting and I honestly can't imagine being more tired than I already am and have been. I change into my gown and sit down in the waiting room. While I wait, Marilyn talks to me about the possible side effects and what I can do to ward them off. She tells me to use natural products like Dove soap. Huh? I tell her that Dove soap isn't natural at all and that the products I use are actually natural (i.e., don't have chemicals, parabens, fragrance etc.). I ask her what I'm supposed to avoid because I'm not going to start using unhealthy products now (I don't know why since I already had cancer). I'm to avoid anything with metals in them, particularly deodorant (which isn't a problem for me since I already use a natural deodorant - no I don't smell) and she gives me a "special" lotion to use often throughout the day and night. I don't know what I'm expecting, but it's just calendula cream (which I already own).
And then a young woman introduces herself as Iris and leads me to the treatment room. I lay down in another massive machine. I'm told to raise my arm above my head and hold on to a metal bar. The bed is covered with a sheet and Iris and another young woman tug the sheet back and forth for about 20 minutes. They're lining up my tattoos with 2 lasers. One is coming out of the wall and another from the ceiling. Their thin beams slice through my body. My arm is going numb again. And the technicians have to take x-rays that the doctor has to approve before treatment begins. And another doctor comes in to look at my skin and make sure it's okay for treatment (weird since I haven't started yet). He waltzes into the room saying "Hi, I'm Dr. Rose please don't move," in one breath. I don't. He says I look great and waltzes out of the room. I'm ready for treatment. A giant arm on the side of the machine starts moving. At the end of the arm is a huge metal disk covered in glass. Inside the disk are what looks like metal teeth (which I later learned are called levers) that open and close as the arm slowly rotates around my body. Each time the teeth open, a loud siren, similar to an MRI machine, sounds. The whole process takes about 5 minutes. By the end my arm feels like lead it's so heavy and numb. Iris comes into the room and thankfully tells me I can lower my arm. I get up, get dressed and go home. I slather my breast and armpit with lotion and apply it every hour. I swear my lymphedema is worse after 1 treatment. Boris thinks I'm crazy (although I'm not sure that has anything to do with cancer).
After the initial session, the others are incredibly quick (thank goodness since I go 5 days a week for the next 5 1/2 weeks). I'm back home within 30 minutes of leaving my house. The bulk of each session is spent lining up my tattoos with the lasers. After my third session, I go to change back into my clothes in the dressing room and I hear a woman crying to Marilyn. She can't believe she's sick. And then I hear her say that while her husband is very supportive, he's been complaining that she doesn't want to have sex. "I'm usually a very sexual woman," she sobs. "But I feel so terrible." I want to open the door and suggest that she tell her husband to fuck off, but I don't. I remember telling Boris that he could get a girlfriend when I was diagnosed (but I also told him that when Miles was born and he woke me up one night for nookie and I explained that he could get a girlfriend but could not, ever, ever, wake me up in the middle of the night). But I also know he never would and would never complain to me about his needs when I'm not feeling well. I feel sad for her.
I go home to find Miles on the potty pulling on his penis. "You have to point your penis in to the potty," I tell him (since he's peed on me way too many times). But he tells me that he's trying to put his penis in his belly button, and suddenly I'm not sad anymore. I laugh and laugh and am so thankful for him. But as I'm snuggling with Miles before bed he says "mommy is sad." "I'm not sad, monkey," I tell him. "Do I look sad?" "Mommy's eyes are sad," he says. And he goes on "mommy's new boobies sad." I tell him that my new boobies are very happy as am I. "You feeling better mommy?" he asks. "Yes, monkey," I assure him. "Mommy is feeling better." But I'm sad again because my poor child is constantly wondering whether I'm sad or feeling okay and every time I get dressed he asks "you going to the doctor mommy?" And now when he asks to see my "boobies" he says "mommy have new boobies?" And then he'll touch them and say "take these off" or "can I take these off?" and I have to explain that the doctor had to take my old boobies off because they had cancer but my "new boobies" get to stay. And sometimes when he plays he'll tell me that his truck isn't feeling well and he's taking it to the doctor so it can feel better. One of my friends tells me that her daughter asks if she's going to work every time she gets dressed and it's really no different but I'm not so sure. And he recently asked Boris where his nipples were and wanted to know where mine were. Eek.
The next afternoon I go to see Dr. McAndrew after radiation. I wait 2.5 hours and am livid. Apparently the patient before me had a double mastectomy after months of chemo and the pathology report showed numerous tumors. I can't imagine how horrifying that must be and I remember being the patient who Dr. Mcandrew spoke to for hours so part of me understands, but waiting on the other side of the door sucks. I just want to go home to my kids. During my check up, Dr. McAndrew tells me how fantastic I look and now that I'm not pregnant or swollen with chemo agents, she "can't believe how tiny" I am. It almost makes up for the 2.5 hour wait. I tell her about the woman I met at Dr. Slate's office who was misdiagnosed with triple negative breast cancer and is now dying of carcinoid cancer which has ravaged her body. She assures me that I should feel confident that my scans were all clear. She explains that scans detect triple negative cancer very well while carcinoid cancer is much more difficult to detect. She also assures me that I don't have carcinoid cancer. Of course there's no way to know if there's a microscopic rogue cancer cell floating around in my body, but if there was something growing, the scans would detect it. I run home after almost 3 hours to be with the boys. We play for 5 minutes before it's time for their dinner and bed.
Before I know it, I'm done with my second week of radiation. I am exhausted. Crazy, crazy exhausted. My skin starts to hurt, especially under the armpit. It makes wearing clothes uncomfortable and so I spend all of my time at home in loose t-shirts. And I'm very pink. I swear that my left breast already looks different. I make Boris look at it 78394 times a day. He swears they look the same. I also swear that I'm having difficulty breathing and so I tell Dr. Botnick when I see him at my next appointment. He has no idea why that is but it's not from radiation. He suggests perhaps it's because Los Angeles is on fire. Perhaps.
Despite my daily appointments, I feel like my life is getting back to normal. My new almost-post-cancer treatment life. When I was initially diagnosed, the only thing I worried about was cancer. And dying. But lately I feel the everyday stresses and worries creeping back into my life -- little things that I used to worry about but swore I wouldn't post-cancer, like bad naps and getting Miles into my dream preschool. One day I get a call from Dr. Botnick's office as I'm about to pull into the parking lot. The machine is broken and I'd have to wait at least 30 minutes before getting treatment. I ask them to call me 10 minutes before I should come in and drive back home. Baron woke up after a 20 minute "nap," and I want to get home. Plus Miles has been jumping out of his crib and I'm not sure he's slept at all. When I get home, I see Miles heading over the side of crib yelling "I'm awake. I need a book! I'm coming out!" I try explaining to him for the millionth time why it's unsafe for him to climb out of his crib but he doesn't believe me since he skillfully lowers himself to the ground. I try explaining to him for the billionth time why it's important for him to rest his body. He responds, "I'm not sleeping. I'm awake." No nap. I'm stressed. The boys are kindof a disaster all afternoon and I feel my impatience and frustration rising. To make matters worse, Dr. Botnick's office calls to tell me the machine still isn't working and they're not going to be able to treat me. I'll have to add on an extra session. Fuck.
Boris and I lay in bed that night and I tell him about my day. In the middle of my story about Miles hurling himself out of his crib, Boris turns to me and says "I forgot that you used to have arm hair. I think it's darker than it was." I smile and thank him for keeping things in perspective. Who cares about naps when I don't have cancer and my hair is growing back? I haven't had body hair in so long that I forget what to do with it now. And I forget that it's even there. One weekend while swimming with the boys and friends, I notice that my leg hair is back. Exciting. But it has got to go, so the next day before heading to the beach for a birthday party (otherwise the beach and I do not get along) I grab Boris' razor and quickly shave. Apparently I also forgot how to shave because I have razor burn for a week.
The next morning I take Miles to his 2 year checkup with his pediatrician. The past few appointments have been really challenging because he is so distraught at the office that the doctor can barely look at him. Before we go, I explain everything the doctor will do, just like I always do. I tell him that nothing she does will hurt except that he will get a shot at the end, which will hurt but only for a minute. He is a superstar at the appointment. He lets the doctor examine him and says "it's time for a shot?" He wails as he's pricked and the nurse asks him if he wants a lollipop. "I need it," he says. And the tears stop. That afternoon I see him heading over the side of his crib. I give him the "crib jumping isn't safe resting your body is important" explanation but he starts screaming. Baron is asleep and I can't bear the thought of 2 sleepless boys so I decide to take Miles with me to radiation even though I know I should let him scream and enforce rest time. He thinks it's the best place ever because everyone tells him how cute he is and Marilyn gives him a piece of candy (with my permission, of course - and no he doesn't come into the actual radiation room with me). He sucks on a jolly rancher for the next 45 minutes saying "what's Miles tasting?" over and over again.
And so begins the daily fight of Miles wanting to come to the doctor with me. Every time I tell him I have to go the doctor he wants to come. And have candy. I tell him that candy isn't nutritious because it has so much sugar in it, so we don't eat it very often. On several occasions I put Miles down for his nap (which he thankfully started taking again) and he asks if I'm going to the doctor. I try to ignore the question and tell him that I will be home when he wakes up. He repeats his question until I answer it. My answer was totally non-responsive so I'd object, too. One morning my mom comes to take Miles to her house for 30 minutes while I go to radiation. Miles starts crying that he wants to come to the doctor with me so I take him. He asks for a candy the second we walk through the door. I change into my gown and sit down with him in the waiting room. There's another young woman sitting across from me with her young son. He's 4. He and Miles chat while his mom and I discuss our cancer and treatment and how crazy the last year of our lives have been. As Miles is licking his candy he turns to his new friend and says "it's not tritious (aka nutritious). Too much sugar." After treatment I go to see Dr. Botnick. Miles comes with me. Dr. Botnick opens my gown to see how my skin is holding up. "Your new boobies feeling better mommy?" Miles asks. Dr. Botnick starts laughing. He asks if I hurt under my arm since the skin is so raw. It hurts like hell. But my skin otherwise looks good. I ask him if my left breast looks different than the right. I want another opinion besides Boris. He shakes his head no and rolls his eyes. Then he points to Miles and reminds me what my end goal is. To live. "You're gorgeous. I'm not just saying that. Gorgeous and charismatic and you can fix your breasts if you don't like them. But they're not different." I love him.
As my last week begins, my skin gets more red and I get more exhausted. So exhausted that I often fall asleep on the table during my 5 minutes of treatment. I'm okay if I'm in motion, but given the opportunity to lay down, I'm out. And it takes a lot to get me out of bed in the morning. I want to get up, I just can't. My skin gets so red that Dr. Botnick has to see me before treatment to make sure I can proceed. It feels like my skin is on fire. I learn that the symptoms might get worse for a few weeks after treatment ends (just my luck). But I have 2 treatments left. That's it. Then I'm done. Done. Done! Over a year of treatment and it's finally almost over. Really, really over. There's nothing else left except staying healthy and cancer free.
Miles comes with me to both of my appointments on my last day. He gets candy and draws with Marilyn while I'm treated. As we drive to my last treatment, Boris texts me writing "is it official?" I get dressed after my last treatment (fucking finally!!) and leave the dressing room. Marilyn hands me a certificate of completion which is hilarious and cheesy and very sweet. Miles and I hug and kiss and sing Yellow Submarine (his favorite new song) and go home to see Baron. At a red light I take out my phone and write to Boris "it's official."
My brother comes over with a box from Tiffany's. I'm excited. I open the box to find a silver key chain etched with "fuck cancer" on it. It's so fitting I just love it. Seth tells me that the engraver initially protested because they "don't engrave curse words," but made an exception after hearing my story.
My end goal is to live. I want to watch my amazing boys grow up. They get more amazing by the second. Baron is sitting up and crawling and babbling. We all love talking with him as he carries on conversations that make him and us chuckle and laugh. And after months of narrating everything Miles does to Baron, Miles now does the narrating. He spends all day long telling Baron what he's doing and everything he sees. It's a constant stream of "look Boonie, Miles is dancing. Boonie, that's a door. Boonie, that's a tree. See the leaves? See that Boonie? I'm playing with my trucks, Boonie. Boonie, you're near the edge. The floor is far away." It's what pulled me through the last year and will make me fight for each day of the rest of my life.
Thursday, August 27, 2009
I Forgot My Anniversary
Miles turned 2 today. I still see his tiny face that I held in my hands for the first time 2 years ago every time I look at him. He's my first love. My baby. The baby who made me want to have a zillion more babies. Me. The girl who had held like 2 babies in her whole life because their wobbly heads scared me. The girl who thought babies were messy and dirty (and they are!) and didn't want any until I met Boris. Me. The girl who hired a nanny well before Miles was born because I thought I'd go back to work immediately. And then I met Miles. And suddenly, I didn't care about the mess and the dirt (okay, so I did but still worshiped him) and didn't want my nanny to come anywhere near him. I wanted to be with him all the time and would cry if I was away from him for more than 2 hours (swear, ask Boris). In college, I remember reading an interview with Madonna in which she was asked what her greatest accomplishment was. Her response was her children. At the time I found that so annoying. This amazing artist and businesswoman was more proud of her children? For some reason I always think about that when I think of my kids and how they are really all that matters and what I am most proud of, grateful for and in love with.
2 sounds so young. Miles is still a baby. And yet he's such a big boy. He has his own thoughts and feelings and can express them all so amazingly. He now routinely tells me "I don't like that," what he "needs," that "Miles is sad," or "frustrated," or "hungry." We had a great morning together. He's so much fun and even snuggled with me without me asking. After lunch, Miles laid down in his crib (with his new red sunglasses on) and I left for radiation. In the changing room I put on my gown like I do every day but today I realize that it's been an entire year since my cancer diagnosis. One whole year. Boris and I had planned a big first birthday bash for Miles last year that we canceled because I had heard the words "it's cancer," just days before.
I forgot my anniversary. I've been in treatment and cancer free (as far as we know) for 1 year. At least that's how my doctors look at it. 2 more years to go before my chances of a recurrence plummet.
What a year it's been. Undoubtedly the worst of my whole life. And the best. I've suffered like I never could have imagined. I've faced death -- something that most people my age have never done and hopefully never will. And I gave birth to a miracle. A beautiful, healthy, ridiculously happy miracle who makes my heart swell each time he smiles at me. Miles makes me laugh a zillion times a day. I have my best friend and love of my life by my side and know that our marriage will survive anything. I can wear anything without a bra.
2 sounds so young. Miles is still a baby. And yet he's such a big boy. He has his own thoughts and feelings and can express them all so amazingly. He now routinely tells me "I don't like that," what he "needs," that "Miles is sad," or "frustrated," or "hungry." We had a great morning together. He's so much fun and even snuggled with me without me asking. After lunch, Miles laid down in his crib (with his new red sunglasses on) and I left for radiation. In the changing room I put on my gown like I do every day but today I realize that it's been an entire year since my cancer diagnosis. One whole year. Boris and I had planned a big first birthday bash for Miles last year that we canceled because I had heard the words "it's cancer," just days before.
I forgot my anniversary. I've been in treatment and cancer free (as far as we know) for 1 year. At least that's how my doctors look at it. 2 more years to go before my chances of a recurrence plummet.
What a year it's been. Undoubtedly the worst of my whole life. And the best. I've suffered like I never could have imagined. I've faced death -- something that most people my age have never done and hopefully never will. And I gave birth to a miracle. A beautiful, healthy, ridiculously happy miracle who makes my heart swell each time he smiles at me. Miles makes me laugh a zillion times a day. I have my best friend and love of my life by my side and know that our marriage will survive anything. I can wear anything without a bra.
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