Thursday, June 10, 2010

Day 36: Post Op Report

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.


  1. funny (not so much to you I imagine)... I've been in the middle of all of this and none of this is news, except that it is... because you write so damned well and, well, it's all different tonight. It's old news given new life by the poet and right now
    that's what I'm taking into my dreams.

  2. i had no idea flying had that effect on you. hmm, everything else i'm trying to think of to say sounds trite. let's see, here's an old faithful... "it'll all look better in the morning" (?) that's one of my mom's favorites. i don't know how you manage to make it into the office on a day like today. my busy month is going to be august, so if you need help after the teachers are back to school, i'm around. but it sounds like you're getting 'er done.

  3. For those who may want a little more detail about the surgical results... The "margin" is just that - flesh around the tumors. Essentially, 2 mm area along the edge where one of the tumors was didn't have a full 1 mm clearance of cells that tested cancer free.

    So while all detectable, visible cancer cells may actually have been removed from Katy's body, because there isn't that 1 mm safe zone, they'll have to go in and pull out another bit of flesh.

    Keep in mind the total volume of what's been removed so far is approximately the size of your fingertip up to the second joint. A millimeter is a penny's edge... so line up 2 pennies edges and you'll better be able to visualize how small this area of concern is - an area that small near her armpit that doesn't have a full penny's clearance to the edge - and abuts right up to the perimeter of the tissue removed.

    Did you ever think you would get so up close and personal with Katy's body? I know I didn't. :-)

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  5. It's true, Gabe is right in a's a small margin, so that's good--it could mean there's no cancer there. But either way, they won't just take out a small part, which is why they are warning me about a mastectomy, since my breasts are small. I could be pretty lopsided here when they're through with me. From what I've heard, they really don't want to go in a third time, so they take a chunk out of you. That part isn't bugging me though. It's just the fact that I have to do it again, that I still have cancer at this point, and I don't know AGAIN what kind of surgery I''m ultimately going to need.

    They're not writing the blog but I'm sure you can tell how hard this is for Gabe, and my mom, and others too. I want to take this opportunity to thank everyone for their help in advance. I saw an Ask Amy column with a person complaining that they never got thanked for services offered to cancer patients through a salon, and Amy agreed that was bad form. Well, I'm telling you, we will be needing so much, and we are overwhelmed so I won't be doing thank you cards any time soon. You know I appreciate it though!

  6. I amend my previous statements - the actual area is 4.5 cm x 3.5 cm x 1.8 cm, so it's more like two fingers to the second joint.

    I also remember an Ask Amy where someone was complaining about sending flowers to a cancer patient and they never got a thank you. In that case Amy's response was, "Well, your friend has cancer - your gifts to them should be given without the expectation that they will have the energy to supply you a hearty thank you." So she's kind of wishy-washy on the issue.

    We WILL be overwhelmed. We do have a lot of offers for help... but let's not let the innocent bystander effect intimidate anyone - KEEP offering help even if we have refused your offers before. Often I suspect we won't know we need help until the moment (although the planner in Katy should minimize that to some extent.)

    We DO appreciate that you all are following along; its very moving - and encouraging. Thank you, for Katy's sake, for my sake, for Lenny and Augie's sakes, and for the sake of humanity at large. These are trying times writ small or large. We're very grateful that our small troubles have attracted such a large following and that we know the support will be there for us when we really need it. We will try not to abuse it or take it for granted and we will attempt to thank each of you in some way, some day, even if at the time we are distracted.

    Keep being good people and together we will get through!

  7. Kate, this sucks. The waiting, the re-do on the surgery, all of it. I'm so sorry, Hon. Thank you for writing it, though, and keeping us posted. Your plane analogy is fantastic. A safe landing, but a hellish ride to get there. (And eyes pried open, very Clockwork Orange.)

    And to Gabe: Reading through this I tried to hold it together, even through Katy's description of all the sobbing. But when I hit the part when you challenged the PA and asked, "What would you do if this was you?" ...that's when I lost it. I hope it's not impertinent to say, but thank you on behalf of all of us who aren't there with Katy every day. You're doing a great job, man.

  8. In RIO BRAVO, the Walter Brennan character says about the Dean Martin character, "Just guts. He is goingout there on just guts and nothing else." I thought of you when I saw that.

    Love, dad

  9. This image of your plane ride has been bouncing around in my mind for so long now, such a rich allegory for for this crazy ride that must feel virtually entirely out of your hands (despite the series of 'decisions' you must make). This time, though, your company is not a group of total strangers thrown together by sheer coincidence but rather friends and family. True, we may be asleep or engrossed in our own lives. You will probably still look around you and have that surreal sensation that you are utterly alone in this life, those moments of hyper-alertness when you come to that strangely powerful realization that you are, in fact, the only one living your life, a concept so basic but so profound. Indeed, most of us will never embody the moment with the same immediacy and intimacy that you have described - with eyes pried open, staring the beast in the face. But we're here all the same. As you say, this journey will surely be long, much longer than the moment in the airplane - I hope you find that you have many hands to hold when you're too scared to scream, many loving faces to look into for a moment of peace or respite, and many loved ones who will respond whenever you do have the urge scream out. We love you.