This is not the blog I expected to write today. I thought I'd be writing about how at around midnight on Monday, I suddenly couldn't feel my arm, all the way down to the fingers, about how I panicked and called the doctor on call who told me this was "normal" after lymph nodes are removed, about how I still can't move my arm very well at all. I thought I'd write about how wonderful it feels through all of that to have this cancer out of my body. I thought I'd write about the hard day I had on Tuesday, when I was very productive doing a lot of writing while working from home but then I just started losing it for hours in the late afternoon, sad and crying and thinking that while I should have all these fun things to look forward to, the only thing I saw right then looming in my future was chemo.
But that's not the blog I'm writing today. I'm writing about the fact that I have to go back for more surgery. I have one positive margin. I am still stage one, still had three relatively small tumors, and still have clear lymph nodes. But.
I still have cancer in my body.
As soon as the physician's assistant who was giving me the pathology walked in today, I knew. I didn't tell Gabe that until later but I could see it in her face. This might be a curse of being a very good read of people--sometimes I know how they feel before they do. Anyway she started in on my stage, tumor size, etc. I knew as well as anyone that if I had clear margins she would have told me that first thing, and then told me to wait a minute to pick up my baby and then sent me on my way. That's not what happened. When she was done telling me about the margin, she told me that they could do a re-excision, but if that excision found more positive margins, we should "think about other options."
She meant have a mastectomy. Besides the fact that I want to hold on to my body parts if I can, that seems akin to having to go through labor and a c-section. I'd rather just know I had to do a c-section in the first place, right?
I have felt disappointed and discouraged and betrayed many times in my life. I have made painful decisions, chosen the hard way, second guessed myself, and all of that. I was beyond devastated when I received my cancer diagnosis. But this was worse, because I had allowed myself to be happy that I was done with one stage of things that needed to be done. And then that was taken away from me too. To top it off, when they came back with a new surgery date, they told me I would have to wait until July 9.
I had held it together until then. Only a few tears. I completely lost my shit at that point. I was sobbing, saying I couldn't wait that long, how could they ask me to live with cancer in my body for that much longer and then put off the rest of my treatment. I said, we have help for this summer. My relatives are teachers and have the summer off, and I thought I'd get through some of chemo with their help. We were told the surgeon was going on vacation, and then both Gabe and I lost it a bit more. Don't talk to me about anyone's frigging vacation. We were told this was standard procedure. I said this is not standard for me. Gabe said I know this is your job but this isn't just a job to us.
The nurse left--she seemed unsure of how to deal with us crazy people, which was surprising to me. What do they expect? She sent the physician's assistant back in, and I lost it even further. I told her, look, I'm 34. My kids are 1 and 4. I need to live. I need to know this isn't going to spread, and I need to move on with my life. The month between diagnosis and surgery for me was the worst thing I've ever gone through and you're asking me to do it again. I am supposed to meet the oncologist on Monday and find out my treatment schedule. Now what am I going to do?
Earlier in the appointment this assistant had asked me when my son was born. It turns out we had our kids on the same day at the same hospital. While I was sobbing all the statements and questions above, Gabe asked her, what would you do if this was you? And honestly, I think that's one reason she went and called the surgeon while she was on vacation with her family (it turns out my surgeon has a three year old and a six month old). I could see that she realized how hard it would be. It's hard for anyone to have cancer, harder if you have children, even harder if you have a baby who just can't understand what is happening and lifts his arms up to you and cries when you can't pick him up, who now will only drink a bottle from you, who misses you even when you're right there in the room. I told her, give me another surgeon if you have to, I don't care. Even if it only saves me a week's time. That's a week of my life and my sanity.
Gabe and I went out to lunch and went back to my office. I did a little work, talked to another cancer survivor, and gripped my cellphone in my hand waiting for that call to tell me if an earlier surgery date would be available. It didn't come. We picked the kids up from daycare, Lenny went to play next door and I started to get ready to take a walk while Gabe fed Augie dinner.
Then the phone rang.
It was the surgeon herself, and I could hear kids screaming in the background. She started talking to me about my pathology, that it was good, stage one, etc. She said she knew I had talked to them about needing to do a re-excision (that's what they call it. just call it lumpectomy #2 and stop bullshitting me). And then she told me I had a few options. I could do chemo first, and she could re-excise later. That option made me feel better--I could make sure the cancer hadn't spread. Or, I could get in for another mammogram that would tell them if I needed another wire placed (she didn't say needle loc!).
Now I don't get why a mammogram would show something else after I just had one on Friday, but this is the way they do things. If I get in for a mammogram and it doesn't show any other spots or masses of concern, I can go in for a re-excision on June 23. If it does show something, we need to find another date because there's no time on that date to place the wire. I was so relieved--16 days earlier. That's 16 days to not wonder if cancer is spreading to my lymph nodes, even though she told me that wouldn't happen. She also told me that I should assume the cancer is already out--this margin issue doesn't mean there's still cancer in my body, it just means they need to be more sure so that it doesn't spread throughout the breast.
Whatever. To me, and to every other woman who hears this news, it means I still have cancer. And I can't move on to that next phase of this process until it's gone. And I have to wait, and waiting is worse than pain, or numb arms, or insomnia caused by how uncomfortable the left side of my body has become. So, I got on the phone to schedule the mammogram and got an appointment for June 18. I will know that day if it's clear and I can do June 23. If not, I am inclined to do the following: start chemo and then have the whole breast cut off, avoiding radiation. That will make me sad on so many levels if I have to do it, but this uncertainty has drained me to the bone.
I know that the effect this is having on me is not unique. My mom has a friend who received this re-excision news and stayed in bed crying for two days even though that is very contrary to her nature. Gabe said that the fact that I was still standing was a testament to something about me, though he wasn't sure what. I think I know what it is, and it isn't good, but it isn't bad either. I think that most of the time I see things as they are, rather than how I would like them to be. That's what makes this setback so hard--the one time I decided to be really positive and assume everything was great, rather than just wait and see, check out what happens!
Let me try and explain, if only so I can understand myself better myself. Four months after Gabe and I got married, his aunt and grandma sent us on a belated honeymoon to Maui. Hawaii is the most beautiful place I have ever seen. It's as if every other place has pollution and weeds and they have rainbows and flowers. The bad weather is wonderful, the scenery doesn't look real. We considered quitting our jobs and working in the local grocery store, until we realized it would take about 5 jobs a piece to afford the place. We never wanted to leave.
But we had to leave this paradise and go home to Chicago's February. It was a direct flight, 10 hours. Torture. You get so bored, especially if you're like me and you can't sleep through the flight. We were told when we got on the plane that there were solar flares, and we had to fly low, and that we would expect some serious turbulence once we got across the Pacific. Um, that's only halfway through the flight. Not good news.
I have always feared flying, in the sense that I grip the armrests until my knuckles turn white with every takeoff and landing. And yet I was always been kind of proud that it didn't stop me from flying. I even chose a career that used to include a decent amount of travel, until I spent much of the last 5 years either pregnant or nursing and felt that traveling was too much of a pain in the ass. When flying I have never cried or threw up or screamed or anything--I just held on and waited.
This time, on our flight home, we hit massive turbulence in California and it didn't stop. This was an overnight flight and most of the people on the plane were asleep. At one point I was looking at the little TV screen on the seat-back in front of us, watching our plane's progress. As I found out later, so was Gabe. Suddenly, the plane plummeted 5,000 feet, with a huge bang. Gabe and I grabbed hands and looked at each other and I honestly thought, I am looking at my new husband for the last time because we are going to die, right now. I didn't scream, though my heart was in my throat, so maybe that was why. In the end, we didn't die, obviously. But that was not a normal situation and I could see it.
How I envied all those people who could sleep through that. And I'm not saying that being awake was better, just that some people can sleep on airplanes and some people can't. I'm in the latter camp, for better or worse. I could go through this cancer experience asleep, or with my eyes closed, thinking everything was fine...if I was different. I'm not. This cancer is bad, and something else bad has happened. It doesn't mean I can't or won't live my life doing everything the best I can. But emotionally I feel like my eyes are pried open all the time and I'm staring the beast in the face. I can't fight him physically, because he's not some man standing in front of me who I can slap in the face. He's me, he's my body. I need to kill certain parts of me to keep the rest going. It's worth it, but it's hell until you get there.
That's what I'm waiting for now. Those moments of terror on the plane were few. I'm having those moments now, but they will last months, even years. I know they will get better. Until that time, I'm trying to just hold on to the armrest and wait until I get back home, that place that seemed so mediocre before compared to the beauty of another place or another life I might have lived, where that frigid February wind and darkness and smog were so beautiful because I had finally landed safely. It's just going to take a while to get there, I guess.