Wednesday, March 25, 2009

Silkwood

It's Thursday. It's one of the big days I've been waiting for and dreading at the same time. I'm to have 2 of my 4 scans. A brain MRI and bone scan. I will finally know whether my cancer has metastasized. If it has, my doctor's goal is to prolong my life but curing me is out. If it hasn't spread, the goal is still to cure me since breast cancer is curable. Once it's metastasized ...not so much. It's almost an all day affair. I check in with the front desk at the Cedars' imaging center and am immediately sent to the "nuclear medicine" wing. I'm there with Cass and she asks me how long the doctors have told me I'll have to stay away from my kids. I have no idea what she's talking about. "When I had my MRI I was told I couldn't pick up my boys for 24 hours because of the radioactive dye used for the scan," she tells me. No one has mentioned this to me and I'm a little freaked out. And pissed. Who wouldn't mention this to me beforehand? "Just ask the doctor," she says.

I get called in a few minutes later and am led into a tiny room with a chair and some cupboards. A technician enters and tells me he's going to start an i.v. with some fluids and a radioactive dye for my bone scan. I ask him if the dye will preclude me from holding my kids. "How old are they?" he asks? I tell him 2 weeks and 18 months. "You're not breastfeeding, are you? he asks. I'm taken aback, tell him no and wait for him to answer my question. He tells me that I can hold Miles for 15 minutes an hour for the next 6 hours but that I shouldn't hold Baron until morning. I can be in the same room with them though. For the love of god. What a fucking nightmare. I can't believe I can't hold my boys and no one even thought to tell me. If I hadn't been with Cass I would have had no idea and would have snuggled them both for sure. Then we'd be one big radioactive family.


The i.v. isn't nearly as painful as I expect and the technician bandages my arm up within minutes of sticking me. "I've left a needle in so that you don't have to get stuck again for your MRI," he says. It's a little uncomfortable, but not bad at all. He tells me to go down to the dungeon for my MRI. I only wait about half an hour before I'm brought into the changing room. I change into my super sexy gown and am am led into the examination room. The MRI machine is massive. A technician comes in to greet me while another gets the machine ready. It's apparently been set up incorrectly because one of the technicians who read my file thought I was getting an MRI of the breast not the brain. I wait while the machine configuration is changed and lay down.

A young woman enters the room and tells me she's going to conduct the scan. "Have you ever had an MRI before?" she asks me. I tell her that I have although I wasn't given the contrast dye. "So you know it's really loud?" Yes. She hands me a pair of earphones and asks what kind of music I'd like to listen to. "It helps drown out the machine," she says. I tell her I'd like to listen to classical music but when I put on my earphones they're blasting opera. I hate opera. I call her over and tell her I'd like the pop station. I try to relax to Britney and songs I've actually never heard (one that's to the tune of
You Spin Me Right Round) but the lyrics say "you spin my head round when you go down down." OMG. I'm horrified. And apparently old because I can't believe anyone would listen to this shit. And I'm secretly their target audience.

The scan begins. I have to lay perfectly still for about 45 minutes. I cry the whole time. Not because it hurts at all but because I'm so scared of what they might find. Plus, under normal circumstances if I heard the noises coming from the machine I would run for my life. It's like a war siren. After about 30 minutes, the technician enters the room again and tells me she's going to inject me with the contrast dye. She does and leaves the room. But one minute later she comes back in and says "you're breastfeeding? You can't do that." For the love of god. "I am not breastfeeding," I tell her. "Are you Sharon Shimanovsky?" she asks. Really for the love of god. I say yes. "Well this says you're breastfeeding," the technician goes on. "Well it's wrong," I tell her. "But thanks for reminding me that I'm not breastfeeding and for having a fight with me about it." Super cool. 10 minutes later I'm done. I wipe away my tears and change back into my clothes. I have about an hour before my bone scan. Cass and I go to eat, drink and be merry but it's pretty tough now that I'm just waiting to find out if my cancer has spread to places that will likely kill me. Plus, now I can't stop thinking about how sad and guilty I feel about not breastfeeding Baron. Especially since a recent article just came out that found Perchlorate, a type of rocket fuel, in 15 brands (not identified) of powdered formula. I promptly freaked out and emailed Baron's pediatrician with a subject line that said "having a heart attack," and sent her the article. She promptly responded "Please don't have a heart attack - I would hate for a news article to kill you after you have been doing so well fighting cancer!" (we heart her) and went on to explain that Perchlorate is not new news, is in many fruits and veggies and water and that in a 2005 it was found in most breast milk in significantly higher quantities than formula. Phew. I know that I didn't choose to stop breastfeeding him and that if he's anything like his brother he will be a super healthy genius regardless of the fact that formula touched his lips before he was 1 year old...but still.


We head back to Cedars for my bone scan. The machine is equally giant, but far more comfortable. It spins all around my body while tiny dots appear and disappear on a monitor above my head. The technician asks me if I've had surgery recently. I tell her about my c-section 2 weeks ago and she says she can see it on the scan. Interesting. I ask her when the results of the scan will be available. "Probably by the end of the day today, but for sure tomorrow," she tells me. And then I'm done. I go home to not hold my boys.

On the way home I call my internist who is affiliated with Cedars and is amazing. Knowing that Dr. McAndrew is always swamped and may not call me the second she receives results from my scans, I ask her if she can check Cedars' system tonight and relay any information to me.
I decide that Miles should sleep at my parents' house just to be safe and Baron can stay there until Boris gets home. My parents feed Miles while I sit nearby and chat with him. I decide to spend my hourly 15 minutes giving Miles his milk and putting him to bed. Okay, so it might be a little longer than 15 minutes, but I think it should be fine since I haven't held him at all and won't be near him all night. Of course, it's the one night that Miles doesn't kick me out of the room like usual. On most nights, when he's finished his milk and we read a book or two, he tells me "mama, bye bye. Miles. Bed." Instead of being ousted, Miles gives me the greatest snugglage ever. He buries his little face into my neck and just hugs me forever. Then he repeatedly requests that I sing "tinka tinka " (aka "twinkle twinkle little star") while he opens and closes his hands making the twinkle motion. He actually takes my hands to make me clap and caresses my face all while beaming a giant smile at me. What's a mom to do? Even a radioactive mom who doesn't want to hurt her child couldn't resist. I was probably with him for 40 minutes, but I have to believe he'll be just fine.

I go home alone. It's eerily quiet in my house with no children around and I'm sad to not hold Baron. Boris brings him home an hour later and I kiss his head a few times an hour. At 11pm I get an email from my internist. It says "preliminary results for brain MRI is normal! Still waiting for bone scan results." Hooray!!! Finally, some good fucking news. And my phone rings the next morning at 730am. It's my amazing internist who tells me that my bone scan is also clear and that I should breathe a sigh of relief because that is huge. Huge. I want to be relieved but of course I ask her how reliable the scans are. I mean, I had a clear mammogram in May and we all know how that turned out. "Talk to Dr. McAndrew ," she says. "But they're very reliable. Not at all like mammograms which we all know aren't very effective for most young women."

I wait for Dr. McAndrew to call me with the final results, but she doesn't. I'm pissed. It's not like I'm waiting for the results of a pap smear or something and assume that no news is good news. Jesus. At least I already know that the preliminary results are fine so I'm not jumping out of my skin. I wait and wait and wait and...nothing. I decide not to call but rather to talk to her on Monday when I'm at Tower for chemo.

At Tower, I ask Angela if it's normal that I received no word about my scans. "Not normal at all," she says. "Dr. McAndrew was out of town and knew you would be here today." Hmmm. Sounds suspect, but whatever. Angela brings me the final results of the scans. CLEAR. I read it again. CLEAR. God I hope they're right.

It's Thursday again. I have my remaining 2 scans at Tower. The PET and CT. I don't really understand what they are and no one has really given me a good explanation except that together, they cover all soft matter in my body. I was instructed to eat an Atkins-esque diet for 24 hours before the scans. No carbs, dairy, starchy vegetables, beans, or sugar of any sort. And then no eating for 6 hours prior to the scan, which is set for 930am. The instructions also state that I'm not to exercise for 24 hours before the scans. Not a problem since sadly, I haven't exercised in months. I'm hungry when I check in at the front desk at Tower and take a seat in the waiting room. I pull out my laptop and am typing away when a woman in a white lab coat sits down next to me. She introduces herself and tells me she's going to be with me during the scans. She explains that after my i.v. has been started and I've been injected with radioactive dye, I'll have to sit as still as possible for about 2 hours. No typing or talking on the phone as that may cause the dye to pool in areas where there isn't anything to worry about (hence the no exercise for 24 hours prior). I wonder what the hell I'll do for 2 hours without my computer or phone. I also wonder whether the radioactive dye is the same as that used during last week's scans. I assume not since the instructions I received didn't mention anything about staying away from children and everyone at Tower knows about Baron and Miles. I tell her about Baron and Miles and that no one told me I wouldn't be able to hold them. "You can't," she states. "You actually shouldn't go home until 5pm and should stay about 15 feet away from them until midnight," she tells me. Even worse. "How come no one thought to tell me this before today?" I ask her. I am so upset it's ridiculous. I start to cry and she tells me that she had breast cancer when her daughter was 3. I have no idea why she's telling me this, but I guess it's because we're cancer sisters? She goes on to tell me that she's "lucky" to not be BRCA positive. Bitch.

Jose, the technician who often draws my blood calls me into an examination room to set up my i.v. I'm not worried about it hurting because he is the best at accessing my port. He's fast and there's no pain. Sadly, this i.v. was neither fast nor painless. For some reason it's excruciating and I nearly pass out. Jose hands me a barf bag...just in case. I am weak and lightheaded and am just hoping that I don't throw up. I've had enough trauma for the day. After several minutes, Jose takes my bag and computer and leads me to the imaging center at Tower. I didn't even know this part of the office existed. The imaging center is housed behind thick steel doors and I sit down slowly in the waiting room. My arm is killing me where the i.v. is bandaged up. I'm asked to fill out some paperwork and can barely hold the pen. And then the woman I met previously comes to get me. She asks if I'm okay enough to move forward with the scans. I don't want to delay and don't want to have to eat only protein for another 24 hours. I tell her that my i.v. is unbelievably painful but that I'm okay. Still a little nauseous. She injects me with the dye. While I'm waiting, Anne walks by to get some warm towels and says hello. I tell her that I am livid about this whole radioactive-can't-hold-my-kids situation and that I want to throw up. She kisses me on the cheek and leaves.

A nurse takes me to a small room with two large lounge chairs and a television. She hands me a remote control and reminds me to be as still as I can. Although I've been cautioned about the phone (the example she gave me was that she once had a Realtor who was on the phone for 2 hours have an abnormal result due to her excessive phone use - you know how Realtors are), I have to make arrangements for Miles and Baron. I'm lucky that I have so much help and wonder what people who don't have family nearby do.
I also text Debbie and tell her she has to take me to lunch because I'm a wreck and surely can't drive. I didn't think the scans would be a big deal after last weeks so I was flying solo at Tower).

After 1.5 hours a nurse comes to tell me that I should go to the bathroom as my scans are about to start. I thought I had read that I was supposed to drink a glucose drink before the scan so I ask her if I need it. She tells me that it's chalky and pretty gross and since I was so nauseous I'm not going to have it. I'm assuming that the scans will still be accurate but am already nervous that they won't be as reliable as they otherwise might. The room where the machine is is freezing. I'm wearing sweats and a thermal but the nurse tells me that I have to change into a gown because the sweats have metal on them where the drawstring is and my bra has a metal under wire. The machine doesn't like metal. I lay down on my back and she covers me up with warm blankets. I have to lay with my arms above my head so that they "can get a good look" at my lymph nodes. It's ridiculously uncomfortable and the i.v. is still making me want to cry. I have to lay like that for almost an hour. The tray I'm laying on slowly moves from one end of the machine to the other. The nurse is very nice and constantly tells me that I'm doing great and eventually, when I think I can't take it anymore, that I'm almost done. I get dressed and the nurse instructs me to eat lots of carbs. Done. I wish I was under doctor's orders to do that more often.

I leave a message for Dr. McAndrew asking her to call me as soon as she has results from the scans.

Even though I was told to stay 15 feet away from my kids, I go home and quickly make out with Miles. Then I nap by myself since I can't snuggle Baron and need to be quarantined. I decide that Miles will sleep at my parents' house again and we'll have our baby nurse come that evening to take care of Baron. I take both boys to my parents' house and watch from a distance as my Dad gives Miles dinner and my mom holds Baron. As my Dad is putting Miles to bed, Miles repeats "have Mommy, have Mommy, have Mommy." Just shoot me.


Since I have no boys at home, Nitasha suggests that we go get a massage. I'm not really supposed to have massages lest my lymphedema act up, but I ask her to find out if any of the masseuses know about the lymph system or alternatively, if they know acupressure which is supposed to be fine for me. She finds me a masseuse who will do a combination acupressure/Swedish massage. Yay! My massage is relaxing, but not nearly as fabulous as I would have liked. I like really firm massages and "acupressure" just doesn't cut it. But I don't want to piss off my arm, so I settle for relaxation. My masseuse is very sweet and massages me for longer than an hour. When she's finished, she tells me about a health food store in Venice that has a book I "have" to get about why eating a raw diet will cure me of cancer. Not vegan, just raw. "Sushi with cream" is particularly good for me she tells me. Gross. And weird. Most "cancer diets," cut out dairy completely and as much fat as possible so cream seems surprising.

Before we leave, Nitasha and I sit in the Burke Williams' lounge drinking water and I check my cell phone. I see I have a message from Tower and check it immediately. It's Dr. McAndrew . She's left me a message at home too, but wanted me to know that my PET/CT scans were clear and normal and she's thrilled. I am too. I hug Nitasha and cry.


Finally some good news. And good news of the utmost importance. My doctors are hoping to cure me. Not prolong my life, but get rid of this shit for good. Me too.

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