Thursday, December 17, 2009

Just Say Node

It's Hanukkah which makes the Atkins diet I have to eat the day before my scans even more annoying. It's hard enough having to avoid all carbohydrates, starchy vegetables and beans, but to have to avoid latkes sucks. Granted, latkes really aren't part of the anti-cancer diet, but still. My second round of PET/CT scans are scheduled for 8:30 in the morning. This time I'm prepared. I've told Miles that I'm going to have some tests in the morning and the doctor will give me strong medicine that's not healthy to be around so I will have to stay away all day. He asks a lot of questions and wants to know what "radioactive" means. Oy.

I wake up in the morning and can't eat breakfast, which I hate. I always eat breakfast. I'm hungry but the faster I get the scans over with the sooner I can eat and see my kids. I spend as much time as I can with both boys and then get into my car. I wait for 20 minutes in Tower's waiting room before Jose comes to take my blood and start my i.v. This time there's no pain as he inserts the needle into the crook of my arm. My glucose levels look good so I'm lead down the hall to the imaging wing. The heavy lead doors close behind me and I sit and wait some more. It's finally my turn.

The nurse asks me what flavor glucose drink I'd like. I didn't drink it last time because of my nausea (and I'm assuming the fear that it would make it even worse because it's disgusting ). I ask her what flavor is least offensive. "Orange," she replies. Orange it is. We sit down at a small table outside of the imaging room. She opens a refrigerator and takes out a metal box that says "danger" on it. Inside is a vile of neon fluid. I was so nauseous during my last scans that I must have had my eyes closed the entire time. Otherwise, I surely would have noticed and internally commented on the fact that I'm about to be injected with a substance so dangerous it has to be housed in lead and clearly marked as such. The nurse slowly pushes the neon fluid into my i.v. Then she shows me to the room where I'm to sit as motionless as possible for the next hour. She reminds me not to talk on the phone or text but does hand me the remote control. I never watch television during the day and I have no idea what I'm watching. I'm freezing (a side effect of low blood sugar) and she continues to layer warm blankets on me. After about 40 minutes the nurse comes back in with my orange drink. I have to chug down 1.5 bottles. It's fucking vile but I plug my nose and drink as fast as I can. Then she tells me "to empty my bladder" and come in to the imaging room.

I lay down on the giant machine as another nurse explains the scans and how they work. She also wants to talk about how great my hair is and how much she loved having short hair. It's long now and I just bite my tongue instead of asking her why she doesn 't chop hers off if she loves it so much. The scans last about 40 minutes. It's uncomfortable lying in the same position for so long but otherwise not so bad. When I'm done I leave a message for Dr. McAndrew asking her to call me as soon as she has any results. Last time I had results the same day. I leave and spend the day avoiding my house and my children. I work, work out and lunch. I'm home by 5 just in time to play with the boys for a few minutes before dinner. I've only been gone most of 1 day but I missed them so much it's crazy. I still haven't heard anything from Dr. McAndrew so I call and leave a second message. I keep my phone by my side while I sit with the boys as they eat. I don't want to freak out that I haven't heard from her but I can't help but wonder whether a bad scan is like cancer. Your doctor makes you come in to hear bad news but would have called if there was nothing to worry about. So I worry most of the night. My appointment to get results is scheduled for tomorrow afternoon.

The next day, per my new fabulous arrangement with Claudia, Dr. McAndrew's nurse, she calls me when Dr. McAndrew has 1 patient ahead of me. Baron has just woken up from his nap and Miles is still sleeping. I wish I didn't have to leave Baron! I'm listening to NPR as I drive to Tower. A reporter is interviewing a woman who has had what sounds like a zillion different cancers. The piece is apparently about how CT scans increase the risk of cancer. One study states that 1-250 women will get a new cancer as a direct result of a scan. Fucking great. I'll have to add this story to the already lengthy list of questions I have for Dr. McAndrew.

Even though there's only 1 patient ahead of me, I still wait for an hour. Dr. McAndrew does pop her head in briefly to say my scans are clear. Clear! But when she comes in to my room to go through the results in detail it seems that we have different opinions about the meaning of "clear." I think it means clear, as in there's nothing on my scans. Period. She tells me that they're clear even though there's a node on my lung. Huh? A node on my lung? What the fuck? She tells me that she's not worried because the node is located on the outside of my lung in the field of radiation and she often sees scarring from radiation appear this way on scans. No offense - but the last time a doctor told me not to worry because the lump in my breast didn't look like cancer, it was fucking cancer. So I'm not feeling good.

On a happier note, she goes through my blood tests and I'm out of menopause. My hormone levels have returned to normal. Hooray!

And then I unleash the onslaught of questions like I do every time I see her. I had no idea I'd have a fucking node on my lung to ask 9487529 questions about. I ask about the CT scan scandal at Cedars (she quickly corrects me and states that the scandal includes many other hospitals as well and that it most likely is the manufacturer's fault). Regardless, I didn't have the scan at issue. Phew. But she agrees with the cited study on NPR that scans pose a risk for developing new cancers, particularly in young women who are likely to have more scans over their lifetime. And the only way for me to know whether the node on my lung is just scarring from radiation or metastatic disease is to have another scan that may give me a new cancer if I'm alive in several years. What a great position to be in. Her suggestion is that I have a limited scan in 4-6 months without contrast dye to minimize the radiation. If the node is the same size, it's scarring. If it's grown...not so much.

Before I leave, she examines my breasts and comments on how hard and uncomfortable the left one must me (thanks to radiation). She gives me a card for an acupuncturist who also does massage. His wife had breast cancer and complained most about the pain her expanders caused her. He learned to break up scar tissue to relieve some of the pressure and pain and many of Dr. McAndrew's patients swear he's helped them. I'll call in the morning.

I've been at Tower for so long that when I get home the boys are eating dinner. Miles jumps up and hugs me. "I missed you mommy," he says repeatedly. Baron flashes me his amazing smile and tries to climb out of his highchair (one of his new and frightening feats). I want to cry. I don't want metastatic breast cancer of the lungs and death. I put both boys to bed without incident and sit down with Boris who just got home. I start to tell him about my appointment when Miles starts yelling "I need more snuggling, mommy! More snuggling!" I can't resist. I scoop him up in my arms, hold him tight and cry quietly. All I can think about is what if my time with him and Baron is limited? I snuggle with him until he asks to go back into his crib.

I cry most of the night.

I call Dr. McAndrew in the morning and leave her a message. I say something to the effect of "how do I know I'm not going to die and how do I live for the next few months with a node on my lung?" My phone rings around 5:00p.m. It's Dr. McAndrew . I answer the phone and she says "I'm calling to talk you down from the ceiling." We talk for 30 minutes mostly discussing everything we discussed yesterday. She really, truly, honestly isn't worried. I still am but there's really, truly, honestly nothing I can do so I kindof have to get over it. I call Dr. Botnick as well and he's also not worried (although he never seems to be worried about anything).

Over the next few days Boris and I discuss and decide that I'm not going to get re-tested in a few months. What's the point? If the node is metastatic disease, I'm going to die regardless of whether I have a scan or not. If it's not, I'd rather not increase my chances of a new cancer down the road.