Monday, November 23, 2009

Noisy to Baron

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."

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?

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.

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.