Cancer the Emperor

Because I have questions, so so so many questions, and because it is a Pulitzer Prize winner, I am about to crack open the book Emperor of All Maladies - A Biography of Cancer. But I am only able to do this because Michael graciously took the girls horse back riding and someone has to stay behind to wait for a furniture delivery. With perhaps an hour of complete quiet, save for me, the birds, and the insects, is this really the book to sit with?  I'm trying to be strong against its 470 pages and gruesome subject matter. But something compels me. So here I go. 

My Day With My Doctors

Tuesday.  Michael and I set out in the rain at 8am to make it to The Cancer Center by 8:30am for our appointment with M, the radiation oncologist.  We sit for an hour in a cold exam room while we wait for M, chatting casually at first, then checking our phones, then staring at each other, then checking the time, neither of us wanting to go to the bathroom should we miss the doctor and her ultimate recommendation that would set our fate.  At 9:30am, she walks in.

She is quick to tell us that the second PET scan showed scar tissue in the lymph nodes in my chest where we had previously seen inflammation.  Scar tissue tells us that there was cancer there, cancer that the chemo likely killed.  Nonetheless, since the cancer travelled there, it is also likely that it travelled to other areas nearby and, to be very safe, we should radiate.  We should radiate the nodes in the mid-section of my chest, in the clavicle, and we should radiate the chest wall.  She feels that the nodes in my armpit were well dissected during the surgery, so we will not radiate there.  This will mean we can cross the risk of lymph edema off the list.  And she says we can also take the risk to my heart off the list as she is confident, having seen the scan of the inside of my body, that they can avoid my heart entirely.  They will not, however, be able to avoid my lungs, though the radiation will only affect 10% of my left one.  She tells me this is nothing to worry about, even if I were an athele (which ironically Google is trying to auto-correct 'atheist'), but I believe her because my dear Aunt Mary Anne has been living with only one lung since she was 8 years old and she is still working full-time and going strong. 

The next thing we want to know about is the risk to the skin and new implant underneath.  M mentions that that area will shrivel and shrink a bit.  It is at this point that M takes a look at my new boobs and all hell breaks loose.

But I need to back up for one brief moment to say that on Saturday, while we were up in the country, I finally had a chance to look at myself in the mirror without bandages.  And I noticed that Lefty was slightly smaller than Righty and a little higher up to boot, giving the unfortunate effect of a lopsided chest, much to my chagrin.  "Well shit," I thought.  "How the hell did that happen?"  It took me a few minutes to prcoess the fact that if i were interested in fixing this, I'd probably have to go under again and this thought was simply too much to bear.  So I resolved to live with it.  A small price to pay for survivng cancer. "There it is," I said to myself.   "My chest for the next 20 years. Better get used to it."  I also resolved not to mention it to Michael just yet.  I could see him getting a little worked up. 

Back in the exam room with M, and her nurse practitioner, Olivier.  And Michael.  Everyone looking at my breasts.  

M is very frank, as she always is.  "This is not an optimal cosmetic outcome.  Your left side is going to shrink even more with radiation, making this difference even more pronounced.  You need to get this fixed before we begin radiation because once we radiate your skin, you will be low on options."  And suddenly we are talking about seeking out a second opinion plastic surgeon.  This week.  As in the week I am supposed to visit family.  As in the week the kids have been talking about every waking minute of every day.  And suddenly we are talking about perhaps another surgery.  At the end of August.  As in the family vacation week up in the country.  As in the only time of year I get to see my husband decompress.  And I would have to go under again.  And I would have to recover again.  The tears start to form way back in the back of my head.  They are not in my eyes yet, lest I look like a naked emotional basket case with breasts.  But they are looming back there.  Threatening to make their way to my forehead.  To burn my sinuses.  And well up in my eyes.  And fall out into the room.  And down onto the purple robe that is hanging wide open.

M is still talking. Now she is asking questions about what my plastic surgeon was thinking.  Now she is telling Olivier to get him on the phone so she can ask him herself.  She is, actually, taking quite good care of my interests, albeit a little dramatically.  She is adament that it is my right to have good looking breasts for the rest of my life.  She points out that I am an attractive woman with many years ahead of me and she doesn't think I should live the rest of my my life with uneven breasts.  "Yes ma'am, I agree with you," I say.  "But I am much more concerned right now with just staying alive and if these stupid fucking breasts are going to cause this much trouble then to hell with them."  She counters with the fact that I need to think ahead and since she is prolonging my life then maybe I should think about how I want to live that life.

We resolve to wait until that evening when she will hear back from my plastic surgeon with his opinion and answers.  Meanwhile, I am to start radiation on September 3rd. I will come in every day for 25 days for a dose of radiation beams that will shoot dangerously close to my heart.  To prepare for this, I need to walk down the hall and see another team of people in white coats.  This team of four or five ask me to lie down on a cot in front of their machine and open my gown.  They line up my torso with beams from their machine.  They ask me to lie very still and don't move a muscle when they send the cot into the machine and leave the room because it is too dangerous for them to be in there while I am scanned.  I somehow manage to lie perfectly still and keep my frayed nerves at bay.  I tell my nerves that they only have to be good for a few more minutes and then they will be free to express themselves.   The white lab coats come back in because now that I am perfectly positioned, they need to tattoo me with three dots.  They will use these dots to align my body perfectly to their radiation machine every day for 25 days.  I put my boobs away and we set the schedule.

The next stop is the nurses station where a sweet young nurse takes me through the skin care of radiation.  She gives me a bottle of lotion to take home.  Michael and I leave, step out into the rain, and search for some lunch.  Over a salad and an organic burger, I cry some more because I promised my nerves that they could. My dear husband comforts me and I begin the well-tread ritual of beating myself up for all the things I did that led us here to this spot.  Pointless and useless thoughts are my specialty.  When the food arrives, we eat mostly in silence. And then we head out in the rain for the next appointment.  We are seeing Dr. Ruth to discuss hormone therapy.  

Safely inside Dr. Ruth's office, we sit down and spot the crystal bowl filled with the dark chocolate Hershey's kisses and we don't take just one.  Michael makes a call, I check in with the kids and the sitters and the parents who have offered to help out.  I don't pick up a magazine. I don't look at the paper.  I stare at the rug and consider falling asleep.  And soon we are summoned to the exam room where I undress again.  Dr. Ruth comes in and looks at me and tells me I look great but she wants to know why my nose is beet red.  I tell her I've had a very emotional morning. She asks me what happened. I am able to get the full story out just before the tears fall again.

"Ok, let's take a look," she says and I open my gown.  "These look great," she says.  "They have healed very nicely.  Yes, the left is slightly smaller, but the right may still be swollen.  We're not going to worry about these right now, ok.  You've been through too much. Your body has been through too much.  There's no way I'm sending you back to the OR right now.  M is a fantastic doctor and very, very smart, but she is Italian so she is a little bit dramatic.  You don't have to worry about these right now. You are going to go on your vacation because you need it. You're a mess."

Ok, maybe she didn't actually say "You're a mess."  Maybe that's what I was saying to myself while she was saying something else, no doubt sweet and soothing.  She tells me to dress and meet her in her office. I empty her purple tissue box, blow my nose, put on my shirt, and Michael gives me another hug.  

In her office, we go through the next five to ten years of my life.  In a couple of months I will start taking a pill once day for five years.  It's a pill that keeps the estrogen in my breast tissue from binding with cancer cells.  Or something along those lines. And starting that afternoon, I will get a shot once a month for the next year, maybe two, that will lower my estrogen level and reduce even further the chances of this cancer coming back. My estrogen levels will be so low that my ovaries will shut down and I will experience menopause.  

Yes.  Ok. Whatever. Fine. Good. Great. Anything else?

I thank Dr. Ruth for calming me down and for extending my life.  I go back to the exam room so Nurse Beth can give me my first shot.  And guess where it goes.  Go ahead. You get one guess. That's right. In my butt.  You could not ask for a better ending. 

Radiation Rumination

Wide awake at 4am.   And what better way to spend the time than to muse over whether or not to radiate my chest.  Which is still an open question between me and my doctors.  It is also a decision that ultimately rests with me.  I hate being a grown-up.

Radiation is another tool in an arsenal of treatments to reduce the chances of this cancer returning, otherwise referred to as 'risk of recurrence'.  Yet another tool to cure cancer that also causes cancer, but whatever, I'm not complaining, I'm just pointing out bitter ironies.  Nothing can reduce your chances completely, but the goal is to take your number down into the single digits.  So, depending on who is looking at the numbers and how, my chances of recurrence today, following chemo but before radiation, is somewhere in the 10 percent range.  At one point I heard a 9, and since that is a single digit I have become very fond of the number nine.

By the way, the statistics the doctors use to determine ones chances of recurrence are based on all the cases of women with breast cancer who came before me.  They record how these women fared after their treatment, how long they lived, how many years passed before their cancer recurred, etc.  They put these women into studies to see how they did with certain chemo drugs and how long they lived after radiation compared to how long they lived without radiation.  I think about these gals everyday and I thank them.

Apparently, radiation would cut my chance of recurrence by about 1/3.  Wow, right?!  Except my chance of recurrence today, without having ungone radiation, is already very low.  Should we just call it 9?  If we do, then radiation would drop my number to a 6.  Not as impressive anymore, going from a nine to six.  Especially given all of the risks that come with radiation.  Radiation can cause cancer.  Radiation will damage the skin. Radiating the lymph nodes under my arm could cause lymphedema (permanent swelling of the arm).  There is a 10% chance that radiation could permanantly damage the implant which would then have to be removed but could not be replaced.  Most importantly, radiation beams could hit my heart, located under my new left breast, and will almost certainly hit parts of my lungs.  I am not in my late 70's.  I am in my late 30's and, should I be around for another 40 or 50 years, it would be nice to have my heart and lungs functioning well.  

The first radiation oncologist we visited (let's call her M, just for fun) says she is on the fence as to whether or not she would recommend radiation for me.  My surgeon told me she's known her for 20 years and she is a very opinionated doctor and is rarely on the fence about anything.  So all I can really glean from that is that she is trying to torture me.  We sought out a second opinion at Memorial Sloan and, lo and behold, a doctor from the radiation department recommends radiation.  Yes, obviously I don't really know what to do with that recommendation either - these are doctors who have just met me and perhaps they looked at my case file for 10 minutes?  20 if I wanted to be super generous.  So we're going back to see M tomorrow. And maybe we'll get closer to an answer.  And after we see her we'll stop by Dr. Ruth's office, my oncologist, so we can discuss hormone therapy and shutting down my ovaries for a year.  It's going to be a fun day.

But we did have a great weekend...

Surgery Tomorrow

Though still anemic, my numbers are up and I am set for implant surgery tomorrow. I have to be at the hospital at 8:15am. Surgery will start around 9:30 or 9:45. So that gives me a good hour and a half to think about all the things that could go wrong. The surgery itself takes about an hour and a half. Doc says most of that time is spent playing with my right boob to see which implant looks best. I'll be under again and he'll prop me up like a rag doll so he can step back and make sure everything is straight, even, symmetrical. At some point, I really need to learn when to stop asking questions.  There is, after all, a point where a girl can know too much. 

Hanging with my girls again today at Camp Mommy. 

Willa: Look, Mommy. She looks just like you."

Me: Pretty much. Oh and look, we both only have eight eyelashes.