Tuesday, June 30, 2009

Take It Easy

My reunion with the boys at home is amazing for me, but not as I had romanticized. Miles does run up to me and give me giant hug (carefully!) but then only wants to talk about "mommy's new bed moves!" I had a hospital bed delivered so that I could get up and down by myself without crying and it totally upstaged my coming home. Baron remembers me and still likes me which makes me so happy. I sit down with Miles while he has lunch and then give Baron a bottle. I think that maybe not picking the boys up won't be nearly as torturous as I expected. Even though I think I'm doing nothing, the rest of the day Boris keeps telling me to stop doing things, take it easy and sit down. I don't know how to take it easy so it's really, really tough. My mom comes over to help with dinner and baths. I kiss Baron goodnight and my mom disappears in to his room with him. I follow Boris and Miles around as Miles gets his bath and milk and feel pretty useless. Although I'm so happy to just be near Miles, I wish I could snuggle him in his chair and put him to bed. Baron has been sleeping 5-7 hours each night (woo hoo!) so Boris and I are hoping for a good night's sleep. We should have known better. We hear crying around 2:00a.m. It's Miles. Boris gets up and I hear them talking. As soon as it gets quiet, Baron wakes up. Poor Boris! He gets both boys back to bed in a short time and returns to the bedroom. In the morning I tell him how sorry I am that he was up with both boys. He tells me that Miles was just excited that I was home. When he went into his Miles' room, Miles kept repeating that "mommy's here. Mommy's home. Mommy has ouchie. Mommy's new bed moves." But before I can be selfishly happy that my child woke up to talk about my return, Boris informs me that Miles also wanted to discuss the ponies he played with that day at my cousin's house. Oh well.

The following day goes much better than I anticipated. I am in agony, but am able to move around better than anyone expected. I spend my day as usual playing with the boys; it's just an altered, less physical play. Miles and I read books together (without him cuddled up to me or sitting in my lap like usual), play with his trucks and I even let him watch television for the first time ever to keep him still and in bed with me. Thankfully, he's not so interested in the television and after 10 minutes of Sesame Street, he climbs off the bed and runs down the hall. He's way more interested in watching diggers on the computer. He's opened up a new and fascinating world of entertainment for me. For example, this is his favorite video which he calls "noisy trucks" - http://www.youtube.com/watch?v=MXhhXXsxSfE&feature=related. When he goes to the park I sit with Baron on the floor and play with him and even give him another bottle. He's super social and smiley and we chat and laugh and sing. Boris (who took the whole week off) and one of my nannies (I currently employ a staff. It's very fancy.) keep trying to make me sit down and won't let me touch a thing. I appreciate it but it's so hard to do nothing and while I worship having my house scrubbed 24 hours a day and my meals prepared for me, I feel so strange not even getting my own water. I nap (which never happens) and feel good other than the intense pain in my chest and hand.

I try to explain the pain to Boris. The best way I can describe it is to imagine having jagged plastic cups carving into your flesh. Or the tightest, most uncomfortable corset imaginable around your chest that you desperately want to take off only you can't. Ever. Or like you want to unzip your chest. It hurts to breathe deeply because it expands my chest. I tried rolling my shoulders back to stretch (no, I don't know why I did that) and almost died. Sometimes I'll move too quickly and will feel a searing pain in my chest. So I never know when I'm going to feel something horrifically painful or not. Good times.

That night as I'm following Boris and Miles out of the bath into Miles' room, Miles sees one of my drains. He gasps, points and yells "water! Mommy has water." I explain it's water from mommy's ouchie and will go away soon. He asks to see "mommy's new boobies," and I oblige. He doesn't seem bothered at all. He just smiles. My "new boobies," which Dr. Slate says are about a B cup look ridiculous on me. I look like a body builder with pecks. I now understand why Dr. Slate repeatedly told me I couldn't have small boobs. I'm just not made for them. But as crazy as I look, I can already tell that my new tatas are going to be really good. Really good. I have a perfect cleavage which is fake, but nice all at the same time. Even in all of my pain, I'm enjoying being braless as strange as it feels.

The next few days are spent the same way. Other than Miles wanting to see my new boobies a lot and talking constantly about my ouchie and new bed, things feel almost normal. Well, except for the not really being able to take care of my kids or be alone with them. At all. One night as I'm sitting with Baron and Boris is feeding Miles dinner, I notice I've missed a call on my cell phone. Then I notice it's from Tower and listen to the message immediately. It's Dr. McAndrew. She wants me to know that the results from my pathology report are in. And they're clear. All clear. No cancer. Anywhere! I cry. Boris and I hug. And cry some more. What a relief. At least for now. As Boris and I are putting Miles to bed, Miles strokes my face and says "make mommy feel better. Mommy sad." I tell him that he makes me so happy and that I'm only sad when I'm not with him and Baron. I can't tell him that I'm happy that I'm not going to die. At least for now. It's the cutest most tender thing ever. And then poof, the moment's gone and he asks "papa see mommy's boobs?" The good news goes relatively uncelebrated since I hurt and can't go anywhere anyway and really just need sleep. But that's kindof how things go now.

Our first weekend without our staff sucks. Big time. Poor Boris is exhausted as the boys decide to wake up every few hours. He runs from one room to the next calming everyone down and attempting to ensure sleep for all. On Saturday while Boris is putting Baron down for his nap, I stay outside with Miles and some friends. One of them has a gorgeous 3 year old who tries to help Miles down off a small ledge and ends up yanking him down on to hard stone. Miles starts shrieking and although I'm a few days out of surgery I instinctively pick him up and carry him inside. It is insanely painful but what's a mom to do? Seriously. Let him scream? It's bad enough that he asks to "go to park with mommy" every morning and I have to tell him no. So we snuggle inside and I clean the scratches on his little body. After that, Miles tells me several times a day that "mommy is clean." Initially I had no idea what he was talking about but then realized that each time he hurts himself I tell him we're going to clean his ouchie so it gets better. Now I'm the one with ouchies and I think he's trying to make sure I've cleaned them so they get better. I just want to pick him up and tell him I'm fine.

By the beginning of week 2 post-surgery I'm totally over not being able to pick up my boys. I know that in my hopeful grand scheme of things, 2 months isn't a long time (that's assuming I don't die prematurely) but at the moment it is torture. Torture! I think it's killing me. But so is my chest. I think the pain is worse, but it's been so bad it's hard to tell. I go to see Dr. Slate because the pain is so severe I'm sure something is wrong. Sadly there's not. Dr. Slate and his amazing nurse, Toni, ask me how much pain medication I'm taking. I had been trying not to take too much because they are so constipating, but they both tell me to get over it, drink some prune juice and take more medication. "Two pills a day isn't enough," Toni says. "You just had major, major surgery."

On the upside, they take my remaining 2 drains out. Besides not looking like I'm wearing a holster, I get to take my first real shower in 2 weeks. It feels amazing. Pre-surgery Miles and I would shower together so I'm finally able to shower with him again. We sit on the floor of the shower and chat and snuggle. He points to my ouchies and repeatedly asks "you okay mommy?" "I'm okay, Miles," I respond. "I'll get better every day." He also points up and says "what's this mommy?" "That's mommy's vagina," I tell him. "Eat it?" he asks? I'm constantly telling him and Baron that they're delicious and I'll nibble various body parts and I'll tell Miles that I want to eat him or gobble him up. Oy. Vey.

Miles goes to sleep for the first time in almost 2 weeks without protest and tears. As usual, I don't sleep as well. I'm still in too much pain. I can only lie on my back even though I desperately want to roll over onto my side. It's incredibly uncomfortable to lie in the same position all night long. Plus, I have a splint on my right arm and hand for carpal tunnels and a nighttime compression garment on my left since my lymphedema is acting up. The compression garment is thicker than an oven mitt and runs from my knuckles to my armpit. It's hotter than hell and I'm still having hot flashes every 10 minutes. It's ridiculous. I also haven't exercised in months which doesn't help and one of the numerous, fabulous side effects of chemo is that it makes me feel like I'm 93. My bones and joints are creaky and achy. So me and sleeping don't go so well of late. Or more accurately since last August.

The next morning I go to my last appointment with Dr. Slate before my expansion begins. The ladies look good. No fluid buildup and he's pleased with how I'm healing. Pleased enough to tell me that he'll start the expansion process next week. I tell him that I've "accidentally" picked Miles up twice and that Baron is so little and cute that I "accidentally" pick him up all the time. I want to hold him all the time. Toni looks at me like I'm crazy and shakes her head no. Dr. Slate explains, for the umpteenth time that my muscles are in a weakened state and that if I continue to lift heavy objects, like children, I could tear them and have to start all over again. Ugh. I know I'm trying to do too much but I honestly can't help it. I try to explain, for the umpteenth time, that it's impossible not to lift my kids at all. He tells me that he can't stop me or force me to follow his medical advice. But of course I don't want to hurt myself or worse, have to start this process over again. So I try to take it easy. Easier at least.

While I was in the hospital, Boris gave me a beautiful card that I couldn't read because I was blitzed out of my mind on opiates to which I had an allergic reaction and then needed Benadryl. Once home, I find his card and read it again. Boris writes "I can't begin to imagine how much pain you will simply brush aside in the coming few weeks as you labor to play with and bench press our children." How well he knows me. He also writes "I know this last stretch of pain and hardship comes after a long, hard road, but I can see the top from here." Me too.

Sunday, June 21, 2009

Turn Mommy Off

It's the day before surgery. Again. Dr. Slate calls and I tell him I hope he's not telling me surgery is canceled. He's not. He's just calling to check in and see how I'm doing. I ask him if Dr. Phillips is totally recovered. He tells me that he did 3 surgeries with Dr. Phillips yesterday and he seemed okay. "He seemed okay is not a ringing endorsement," I say. "I want to hear that he's amazing and in the best shape ever." "Of course," says Dr. Slate, "I just meant he was already okay yesterday and those surgeries were just practice for yours." I sure hope so. Everyone keeps asking me how I'm feeling and how I'm holding up with this sad tone in their voice and it's driving me crazy. I wish I didn't have to talk to anyone but my boys (i.e. Miles, Baron, and Boris).

I'm incredibly sad all day but spend the day as usual with the boys. They're going to spend the night at my parents' house since I have to be at the hospital at 5:30 in the morning. I have several discussions with Miles throughout the day about my upcoming surgery. As I'm putting him to bed and after viewing my boobies for the last time, he lays in my arms and recounts the end of his day: "Sasha push Miles. Miles sad. Miles cry. Mommy hug Miles. Sasha Sad. Mommy go hospital. Mommy have ouchie. Ouchie go away." Then it's silent for several minutes. I think he's lost in deep thought or processing really complex information. He goes on to say "Green digger. Bulldozer dig deep hole." And he continues to repeat those thoughts over and over again for a long time. We bounce from Sasha pushing him to my ouchie to the bulldozer. I kiss him a zillion times, put him into his crib and tell him I'll see him in a few days. Thankfully it's dark in the room so he can't see me crying. When I come downstairs I am ecstatic that Baron is still awake even though he should have been sleeping almost an hour ago. I get to feed him one last time. I hold him and kiss his tiny face and tell him I'll see him in a few days and that I hope he's sleeping through the night when I get back. I can think positively, right?

Boris and I have our last supper for a few weeks at our favorite sushi restaurant. We come home to an empty and quiet house and take a few pictures of the ladies before they're gone. And then we pass out from stress and fear and exhaustion. I haven't set an alarm in 2 years and nearly fall out of bed when the buzzer goes off. I'm up immediately. I brush my teeth like a madwoman because I remember Boris telling me that my breath was offensive after my lumpectomy and jump in the shower. I can't eat, don't need anything other than some pajamas as I'll be in bed for the next few days so I throw on clothes and wait for Boris.

We arrive at Cedars and register. I cross out the section of the contract allowing residents and students to "learn" on me during surgery and then am lead into the pre-op room. I meet the "anesthesiologist" who is still a resident and cross-examine him about his training and experience. He passes and skillfully inserts my i.v. causing me little pain. The real anesthesiologist comes in to meet me and asks me several questions about my history with anesthesia and whether I'm allergic to any drugs. None that I know of. Boris joins me a few minutes before Dr. Slate enters the room. He's carrying a small briefcase which he opens and empties with great care. He's a perfectionist and you can see it in everything he does. He pulls the covers around my bed and hooks them shut with clothespins to ensure total privacy. I repeatedly tell him that I don't really care who sees my boobs, but he cares and doesn't want me to be uncomfortable. He measures me and starts drawing all over my chest. He makes thick, navy markings from my neck down to my belly button, under my breasts, across the nipples. I keep looking down to watch and he keeps asking me to look straight ahead. "Your breasts hang differently when your head is down," he tells me. "You are the calmest person I've seen before this procedure," he remarks. Dr. Phillips comes in and he and Dr. Slate discuss the road map on my chest. And then they're ready and tell me they'll see me in surgery. Boris kisses me goodbye many, many times and tells me it's going to be okay. I cry as the nurse wheels me away. The anesthesiologist tells me he's going to give me something to help me relax but the next thing I remember is waking up in the recovery room.

I hurt. A lot. And I'm so itchy I could cry. I'm groggy but remember the nurses driving me crazy trying to take my blood pressure and my temperature. I can't help but think who the fuck cares about my temperature? Please just let me be. Boris tells me they're just trying to help. He goes home to put the boys to bed and my Dad comes to take his place as I'm being tortured by yet another nurse. This one keeps trying to do something to do my leg. It's taking forever and when she's done she pulls the sheets over my foot. But the sheets are all tangled up and it feels terrible and I can't get her to understand what the problem is. I keep asking her to pull all the blankets over my foot and explain that she only pulled the top sheet over, not the bottom sheets. She can't figure it out and I'm so annoyed. I ask my Dad to scratch my face since I can't move my arms and am almost crying as I tell him to make the nurse fix the fucking sheets. After way too many tries, she gets it. A group of nurses wheel me from the recovery room to my room.

I want to die as the nurses transfer me from one bed to the other. It's so unimaginably painful. And they're still harassing me about blood pressure and lord knows what else. I just want someone to scratch every inch of my body I'm so itchy and want to be left alone. My Dad scratches my face for an hour. Dr. Slate comes to see me and wants to know why no one else has realized I'm having an allergic reaction to the Dilaudid that's supposed to be easing my pain. "You're flushed and it's not normal to be this itchy. The nurses should have noticed this while you were in recovery," he says. He instructs the nurse to switch me to Morphine instead. And I'm given Benadryl. Thank god. What would I do without him? I complain that I'm surrounded by annoying and retarded people (my Dad excluded, of course) and am so glad he noticed what no one else did. Unfortunately, the insane itchiness lasts all night. I wake Boris up multiple times to have him scratch my face or head or leg or seriously anything he can get to. I'm too weak to lift my glass of water so I have to wake him for that, too.

I barely sleep. The nurses are in and out monitoring my temperature and blood pressure. Apparently I'm running a fever. Rather than give me a Tylenol, the nurse puts an ice pack on my head. I'm serious. It keeps falling down my face or off my head completely and I can't fix it. I have to keep calling her in to the room. "Does this actually do anything?" I ask. "It's really annoying." She swears it does and finally puts it under my head. At 6:00a.m. I realize that not only am I suffering from itchiness, but my right hand is totally numb. I tell the nurse but she doesn't seem to care. She also won't give me another Benadryl because it hasn't been a full 6 hours since my last pill. Are you fucking kidding me? I ask her if it's the same Benadryl I can buy at any drug store. It is. I ask Boris to go buy me some so I can put myself out of this misery. In the meantime, I ask her if she's told Dr. Slate that I am so itchy I'm moving my body in ways that surely can't be good for me so soon after surgery to try to relieve myself. She says "I've told him that you are really itchy." "That is not what I asked you," I snap. "I asked you if you told him that I am moving my body in ways I shouldn't because I am so itchy and have no way to feel better." She says no and says she'll tell him. "I don't believe you," I say. "I want you to call him from my room so that I can hear your conversation with him," I tell her. She agrees to have Dr. Slate call me. I speak to Dr. Slate on the phone an hour later. He tells me that unfortunately, there aren't other strong pain medications that I'm likely to respond better to. My options are to be in less pain but itch like hell, or be in more pain and itch less. I opt for the latter and am taken off the Morphine drip and put on oral pain medication. As fabulous as Percocet is, it's not really equipped to alleviate the extreme pain I'm in. He also instructs the nurse to give me more Benadryl immediately. I don't want to rip my skin off anymore, so I guess that's good. One of Dr. Phillips' residents comes to see me and I tell her about the numbness in my right hand. She says it's nothing and there's nothing that can be done. "So I just suffer in agony and get no sleep?" I ask her. Apparently.

When Dr. Slate comes to see me for the second time of the day (we heart him so much) he tells me there is no way I'm going home tomorrow. Every time I saw him prior to surgery I informed him that I was going home from the hospital in 2 days. He would always respond "I am not going to restrain you, but let's just see how you feel." I know he's right and don't argue. Crap.

As I'm telling my Dad that I've been taken off Morphine thanks to Dr. Slate since no one else around here is competent, he asks me if I remember what happened with the nurses as they were moving me in to my new bed. I don't. Do you remember asking one nurse "what part of don't touch me don't you understand? and telling another 'get away from me?'" Sounds familiar. I think one of the nurses kept touching my boob and she was killing me. "What else was I supposed to do?" I ask my Dad. "Nothing," he says. "I just think it's amazing that you were ordering everyone around and fighting for yourself even in a drug induced stupor that you can't even remember. If I ever need taking care of, I hope I have you on my side." But of course.

2 hours later I hurt less and itch less so things are looking up. Except that my hand is still completely numb and the "pins and needles" in my fingers are excruciating. I complain to anyone who will listen. My nurse thinks it's because I have been in the same position for so long and helps me stand up and sit in a chair for the first time. The tightness in my chest is so unbelievable I can't breathe. I can't believe it hurts this much to get out of bed and sit still in a chair. But it does. My right hand however feels much better. I sit in the chair for 30 minutes which I think is a miracle but the nurse doesn't find so impressive. She wants me to sit there a while longer so that someone can change my sheets but I tell her I might die if I don't lay down 10 minutes ago. I lie down and Dr. McAndrew comes to see how I'm doing. I tell her about the itching and the numbness in my hand, but that it seems to be much better. She leaves and of course my hand goes numb again. This time for hours. I get up and move around but nothing helps. I even take a walk around the floor which the nurse does find impressive. I tell my nurse a zillion times that something is wrong and that I fear my hand might fall off. Boris swears it won't. I can't sleep it hurts so badly. Finally the nurse calls a doctor. Excuse me, a resident (for fuck's sake!!!) who is as equally useless as every other resident who has come to see me. He looks at my arm and hand and touches it. He runs his finger over the bandage where my port was and asks what it is. "It's where they removed my port," I tell him. "What is this?" he repeats. OMFG. Shoot me. "Like I said 3 seconds ago, it's where they removed my port. Is something about that sentence confusing to you?" Jesus. He tells me that the numbness is nothing, that there's nothing that can be done and that it will go away in time.

I wake up after what feels like 10 minutes of sleep to my next door neighbor hacking up a lung. Boris gives me sponge bath and I feel much better. It's been well over 12 hours since my hand went numb again. Dr. Phillips' understudies come to see me and again tell me it's nothing and that there's nothing that can be done to help. A few hours later a woman comes in and introduces herself. She's from whatever department the port installation/removal is in. She starts to ask me some questions about my port. I just look at Boris in awe. He tells her that my port was removed. "Oh. Was there something wrong with it?" she asks. I am dying. "I didn't need it anymore," I say in total disbelief. "Hmm. Well when was it taken out?" she asks. "I cannot talk to her," I tell Boris. Boris tells her it was removed during surgery and this woman actually says "this surgery?" Boris nods and she gives some lame excuse about how she had to check and blah blah blah but um, my chart is on the fucking door and my surgery notes clearly state "bi-lateral mastectomy with port removal from right arm," not to mention everything at Cedars is on a centralized computer. Maybe she can't read? I tell Boris that I think the doctors affiliated with Cedars are amazing but you're totally fucked if you actually have to stay here. I seriously have never been surrounded by such stupid people, asked such stupid questions, period, let alone by people who are supposed to be taking care of me. And this is a good hospital. I seriously can't even imagine what it must be like elsewhere. I just know I wish I was at St. John's. Sad since I much prefer a mazuzah on my door to Jesus hanging over my head, but whatever.

But then that afternoon the heavens part and a beam of light walks through my door. Dr. McAndrew. I tell her that my hand has been numb forever and no one cares. She says the only thing she can think of is that she knows I had a blood pressure cuff on my right wrist for 7 hours during surgery (my right upper arm was off limits due to the port and my left arm is off limits forever) but says that there is medication I can take that might help the pain. Dr. Slate comes in a short while later. He doesn't understand why the nurses didn't call him last night and he's pissed. Me too! He wants me to see a neurologist immediately. He and Dr. McAndrew have a neurologist in my room within the hour. All is well with the world. The neurologist does a series of tests on my fingers, hand and arm and asks me numerous questions. He concludes that I probably had a very mild case of Carpal Tunnel Syndrome prior to surgery (hence the numbness in my right hand after chemo). It's quite common with the late stages of pregnancy and can be induced by chemo as well. And then the blood pressure cuff squeezing my wrist off and on for 7 hours worsened everything. Great. Just what I need. Carpal Tunnel. What!? The neurologist says it will go away on its own but he orders a splint for me to wear as much as possible, but always when I sleep. Dr. Slate waits in my room until the splint arrives. He also berates the nurses (in his charming way) and instructs them that I am his private patient and they are to call him and only him should I need anything. The splint doesn't completely fix the "pins and needles" in my hand, but it makes it bearable and I nap for the first time in 2 days. Before the night shift starts, I meet my new nurse. "Just in case I need anything, I want to make sure you know," and I can't finish the sentence because she interrupts me to say that she knows she is to call Dr. Slate if I need anything at all. Phew.

After constantly being told that nothing was wrong when something was or maybe because I was mad for 2 days straight and no one understood why, several people from the "Patient Care" center come to ask what they can do to make my stay better. I'm offered the "deluxe" menu (aka hospital food on glass plates) and parking passes. In addition to being "cared for" by idiots, apparently I waited a long time for a bed. Who knew? The Breast Center also sends a gift basket which is so nice. Even the anesthesiologist comes in to see how my hand is. He reminds me that he had few options for the blood pressure cuff.

I have a computer date with Miles before I have dinner. It's the best. He's so happy to see me he's climbing up on the kitchen island trying to get in to the computer. "I love you, mommy," he yells. I die of happiness. We chat about his day and he repeatedly tells me "mommy in hospital." I feel so much better and happier after seeing him. My mom holds Baron in front of the camera and he has this hilarious look that says "what the hell is going on here?" but I tell him I love him and miss him. I hold court for dinner as several good friends bring Boris and I food and visit. I tell Boris that he should sleep at home so he can get some rest and wake up with the boys. Now that I'm able to scratch my own face and lift a cup of water, I don't need him to suffer on a hospital cot. And so my room empties and I go to sleep. For 2 hours. For some fascinating reason, my nurse wakes me up at midnight to look at my incisions. "I didn't want to disturb you while you had company," she says. My company left 2 hours ago. "So you thought it was better to disturb me while I was sleeping?" I ask her. I tell her to please leave me alone unless she needs to do something that is actually necessary and useful. I can't wait to get the hell out of here. I already told Dr. Slate that I was leaving tomorrow and barring any trauma tonight, he agreed. He said that he'd be in to see me around 11:00a.m.

I sleep for 7 much needed hours straight. I wake up to my neighbor hacking up a lung again. I get up and go to the bathroom to brush my teeth. Dr. Phillips' minions walk in the room and I think look shocked to find me up. I lie down so they can inspect me and when they ask how I am doing, I inform them that I'm much better thanks to Dr. McAndrew and Dr. Slate. I tell them how angry I am that I suffered needlessly for 2 days and that contrary to everything they told me, there were things that could be done to relieve my pain. They should have called someone who knew what they were doing, I add. They're mostly mute and then leave.

Boris calls me and we have another computer date with Miles. This time he's far less enchanted with me. I keep telling him how much I miss and love him and after a minute of me, he starts saying "see trucks. See noisy trucks. See diggers!" After a few more minutes he yells "turn mommy off! See noisy trucks." I can't compete with YouTube videos of construction vehicles so I tell him I'll see him soon. "Bye mommy!" he shouts. Boris assures me it's a sign of his comfort with the situation and independence but it still makes me want to cry. Boris brings me breakfast, I give him a father's day gift and promise that we'll have a better celebration next year. And then as promised, a few minutes after 11, Dr. Slate enters the room. "You still want to go home?" he asks. Absolutely! He removes 2 of my 4 drains (painlessly thank goodness) and says I just have to wait for a wheelchair. The nurses must have wanted me out as soon as humanly possible because the wheelchair is outside of my room before Dr. Slate leaves. It was about the only prompt and on-the-ball thing they did my whole stay.

In less than 10 minutes I'll get to see my boys and I cannot wait!

Thursday, June 11, 2009

The Dog Ate my Homework

It's the day before my surgery. I'm planning on having a relaxing day with my boys. Boris and I haven't decided whether we'll go out to dinner and I haven't decided whether I want to take pictures of my breasts before they're gone. I have the day to decide. I spend the morning at the park with Miles as usual and come home to play and snuggle with Baron. Katie 1 comes over for lunch. She makes me feel so much better about my surgery. She tells me what it was like for her, what I should expect and shows me her boobs, again. They're still so good that I just feel better knowing that's what I'll look like, too.

Halfway through our lunch my phone rings. It's Dr. Slate. "I need to talk you about your surgery tomorrow," he says. This seems weird since we've already taken care of everything, but okay. "I just got out of surgery and was told that Dr. Phillips is in the hospital with food poisoning. I don't think he can perform your surgery tomorrow," he says. I am in shock and am speechless, which is a pretty major for me. I look at Katie 1 and then say "are you kidding?" He's not. "So what does this mean?" I ask. Dr. Slate says that they will have to reschedule my surgery until next Thursday. It's the first day they could squeeze me into their schedules. Or I could get a "fill in" surgeon which is obviously not an option. Holy shit. "Is that okay?" Dr. Slate asks. Of course it's not okay. I've been emotionally preparing myself for the past 3 weeks for surgery tomorrow and now it's postponed for an entire week. But what choice do I have? And it's really quite fitting for me and everything else that's occurred. Because whose surgery gets canceled because their surgeon landed himself in the hospital with food poisoning? Only me.

I guess it could be worse. I could have been the patient in surgery with him when he got sick and had to leave.

So now I have another week with my boys. And another week to agonize over my upcoming surgery. Shoot me.

Wednesday, June 10, 2009

Two Big Ones

I have three weeks of freedom. Post-chemo, pre-surgery. I want to spend every minute I can with all three of my boys. I keep my appointments down to the necessities. No acupuncture, no lymphedema treatments, just surgeons and pedicures. Miles and I live at the park. The second we come home I spend time with Baron and I switch off between the 2 until they go to bed. Then Boris gets home and we spend our evenings together. We celebrate our 3rd wedding anniversary and try to joke about what an eventful 3 years it's been. 3 years, 2 babies and cancer. Boris tells me that even though this year has been unbelievably challenging, he's so happy to be sharing his life with me and will be by my side when times are better, too.

I have my last 2 appointments with Dr. Phillips and Dr. Slate. Dr. Phillips explains the surgery again and answers my remaining few questions. He tells me that he needs to push my surgery date back by 3 days because he needs to perform surgery on someone with esophageal cancer. No problem. What's 3 days? Before I leave, his patient coordinator comes in to meet me and go over the administrative aspects of the procedure. While she's talking she casually mentions that "since Dr. Phillips isn't a provider," and I have no idea what she says next because I'm in shock over the beginning of her sentence. "What are you talking about?" I ask. "Didn't you know that he's not a provider? Kristi Funk usually tells people when she refers him," she says. No I didn't know and am in a bit of shock. "I need to know what the costs are that I'll be responsible for," I tell her. I also tell her that I'm still waiting for information regarding the blood bank and the tests I need to have to be able to use Seth's blood should I need it. She assures me she'll get me the information immediately. I'm panicked. Dr. Slate is going to cost me a fortune (I'd say an arm and a leg, but really it's 2 boobs) and I can't imagine that Dr. Phillips is a bargain. But what am I going to do? Switch surgeons? Again? I like Dr. Phillips the best and think he's the best surgeon so I'm kindof stuck regardless of what the cost is. But still.

I don't hear back from the patient coordinator. The following day I call her again. She tells me that she's left messages for Valerie who has the information regarding the cost of the surgery. She offers me Valerie's email and I take it. But the next morning when I still haven't heard from anyone I realize that I am fucking livid and that it is not my responsibility to track down basic information that I should have been given months ago. So I send an email to the patient coordinator and Valerie and "bcc" Dr. Phillips. The tone of the email is, let's say, harsh. To summarize I tell her that I am livid, that it's unacceptable to have learned that Dr. Phillips isn't a provider 3 weeks prior to surgery, that it is her and her responsibility alone to have provided me with that information (not another doctor's), that it is unacceptable that I still don't have that information and that while double mastectomies and blood transfusions may be no big deal to her and her office, it is to me, that I have 2 children under 2 and can't simply race off to Cedars whenever she feels like sending me information regarding the blood bank and that while I am confident that Dr. Phillips is the best surgeon, I am seriously concerned about his staff and moving forward. And guess what? I have all the information I need within the hour. Sort of. Valerie tells me that Blue Shield is a bit different (which is weird since they are just as fucked up as any other insurance company) and that since Dr. Phillips isn't covered, neither is the hospital. I assure her that that cannot be correct and suggest that she speak to a supervisor at Blue Shield. "If that's the case I can't use Dr. Phillips. The hospital is the expensive part. But a hospital that is covered doesn't become un-covered because a doctor providing care there isn't a provider," I tell her. She calls back to tell me I'm correct. Amazing.

Now that the drama of surgery has been settled, I move on to the next drama. I wake up in the morning with what looks like a bug bite on my left breast. Since I recently saw a video on inflammatory breast cancer during which multiple women thought they had bug bites on their breasts only to find out it was inflammatory breast cancer and died shortly thereafter, I call Dr. McAndrew panicked. I leave her a message informing her that I might have inflammatory breast cancer and have to see her right away. Her nurse returns my call and informs me that I do not have inflammatory breast cancer, but that I should come in that afternoon just to alleviate my concerns. Thankfully, she was correct but I had to wait over an hour for Dr. McAndrew to see me for 2 minutes to get confirmation. But that's my new life. Life post-cancer. Any bug bite, headache, joint pain, breathing problem is now in my head some form of cancer that might kill me. I also tell Dr. McAndrew that I've been having horrible neuropathy in my right hand. It's completely numb almost every morning for close to 30 minutes at a time. I didn't have any problems with my hands during chemo and am nervous something is wrong (but of course). Plus, I'm still swollen and thought I wouldn't be by now. She sadly tells me that side effects from chemo can last for months and that often, new side effects occur after chemo is finished (for example half of my left eyebrow fell out after I finished treatment). Rude.

I rush home just in time to give Baron his bath and Miles his dinner. Baron and I are in love which I think is a miracle given how little I feel like I see him. He gazes at me with the most beautiful stare and laughs like I'm the funniest person on earth. He has the most magnificent smile that says "oh my god! It's you! I'm so happy to see you!" every time I see him even if I've only been away for 45 seconds. I get to spend a few minutes rocking him to sleep before it's time for me to put Miles to bed. I wonder when I'll ever be able to put both of them to bed and not give Baron to someone else.

In the past month, Miles has become obsessed with my boobs. Obsessed. They're now part of his bedtime routine. The irony. Each night after he has his milk and we read a zillion books I tell Miles that it's time for us to snuggle and then he'll go into his bed. He sits on my lap facing me and lays his head on my shoulder. He used to stay that way until he was ready for his bed. But not so much anymore. Now he sits up and says "find mommy's boobies. Open it (pointing to my shirt)." I lift my shirt and Miles yells "I found them!" But tonight as I lift up my shirt Miles says "two big ones!" I can't stop laughing it's so funny. He laughs too. I say "yes, mommy has two big boobies." "Miles has big boobies?" he asks while looking at his chest. "No monkey," I tell him. "Just mommy."

The next morning me and my 2 big ones go to see Dr. Slate for the last time before my surgery. I decide I'll go to the blood bank for my requisite blood typing/screening afterwards. Dr. Slate is 45 minutes late and I'm pissed. I could have had my blood drawn instead of idly waiting. Not to mention I'm missing time with the boys which makes me die. When I finally see him he asks if I'm okay and I tell him I'm really angry that I've been waiting so long and that I wish someone would have told me so that I could have made better use of my time. Dr. Slate is so apologetic and tells me he'll make sure I don't have to wait to get my blood drawn. He answers my last few questions about the procedure like when can I exercise and drive and remind him, again, that I want small boobs. When we're done talking, he escorts me to the blood bank as promised. "Are you okay if I tell a white lie to speed things up?" he asks. To get me what I want? Absolutely.

We enter the blood bank and there are at least 10 people sitting in the waiting room. Dr. Slate breezes into the back room and starts talking to one of the technicians. "I have to get her back to chemo immediately," he says. Thank goodness for my scarf! Although the clerk at the front desk is reluctant to let me jump to the front of the line, the technician tells me to come on in and leads me to a chair. Dr. Slate comes with me. I start my yoga breathing as the technician wraps the tourniquet around my arm. It always makes we want to throw up. But before I know it I'm done. As we're walking through the waiting room, Dr. Slate loudly says "okay, we'll come back," just to not piss anyone waiting off. He tells me that as his patient, his responsibility is to take care of me no matter what the issue is. I heart him.

And then I have my last appointment before surgery: lab work and an EKG at Tower. I want to cry when the nurse tells me she'll have to draw blood from my vein instead of my port. Why have a port? Plus, I just had blood drawn from my vein yesterday and wish I had known what they needed. I could have handled everything at the same time. I almost pass out. Again. I am the worst patient ever. The irony. The EKG thankfully is fast. Not because it hurts, but because the nurse is so dumb I think I'll die if I have to be near her any longer. At one point she asks me if I have kids. Really? I was only in here giantly pregnant and was the only person who was in here giantly pregnant, but whatever. She laughs and says "oh right. There are just so many patients here, you know?" I'm silent. Then when she opens my gown to attach the EKG nodes to my chest she says "oh now I can see that you have kids. But it's not too bad." OMG. Who says that? Especially because I am half her size 3.5 months after giving birth. But again...whatever. The EKG makes me think about Mattie since she's supposed to have one every 6 months and hasn't had one all year. And then I think about Norman and how much I miss him and how awful the end of his life was.

I decide that it's finally time to start talking to Miles about my surgery so that he'll know what to expect and in light of his recent obsession with my boobs, he needs to know that they're going to look different soon. I never had to talk to him about being sick because other than losing my hair, he didn't know I was. I never acted sick around him or let chemo interfere with my activities with him. And so while he and I are snuggling in his chair before bed and while he's asking to "see mommy's boobies," I tell him that mommy has a problem in her boobies called cancer and the doctors are going to take mommy's boobies away to make mommy better. "Mommy will have new boobies," I say. "Mommy will go to the hospital for 2 or 3 night night sleeps and when I come home I will have an ouchie where my boobies are. We will have to be gentle with mommy's body. But then the ouchie will go away." Miles is quiet for several minutes. Then he starts stroking my belly. "Take mommy's belly away?" he asks. "That would be nice, but no. Just mommy's boobies." He's quiet for a few more minutes, then smiles and shouts "new boobies!!" He kisses me on the lips and lays his head on my chest and just lies there for a long time. Then he jumps off my lap and runs over to his book case. "Another book," he says. "Read more books." I tell him he can pick out 1 book for us to read before bed. "2 books," he says. "1," I respond. "2 books. 2," he says. "1 book, monkey." And Miles picks out Shel Silverstein's "A Light in the Attic" and brings it to me. I think he's a genius. Or maybe I just think he's like me. If he can only have 1 book it's going to be the thickest, longest, biggest book he owns.

In the morning when he wakes up, Boris brings him into our bed where I'm snuggling with Baron. Miles turns to Boris and says "mommy in hospital. New boobies." Boris looks at me. "That's what Miles took away from our cancer conversation last night," I tell him. Leave it to my genius son to sum it all up in 5 words.