Sunday, June 6, 2010

Day 32: Lumpectomy blog

After writing my short blog yesterday I felt like writing a longer one on the surgery itself.

Note the pic of the unsuspecting Katy taken a few minutes before she left for the hospital for surgery on Friday. I thought I would blog about this experience, as I think that the medical community does little to nothing to prepare you for what's going to happen. First of all, a lumpectomy is not one procedure. For me, it was six procedures. For some people, it is seven, and others have to do the whole thing twice. More on that later. But for someone who has had a lot of medical procedures done, everything that happened was a little overwhelming, even for me. As I'm describing this, keep in mind that we're talking about breasts--sensitive stuff. Women, you get the pain involved with this sensitive area of your body. Men, just substitute "testicle" for "breast" with everything I say.

The day before surgery I got a call from someone to tell me where to go and what time to be there. I needed to be there at 6:45--but in a different building than where I would have surgery. Huh? Why? You will be getting mapped for your sentinel node biopsy. OK, I knew I was having the lumpectomy and the sentinel node procedure, but mapping? Then I would go to another building for my "needle loc." These people have got to be kidding. What the hell is that? Luckily, a co-worker who had gone through a lumpectomy had warned me that they thread a wire through your tumor prior to surgery. You'd think they could tell you that, it's not like that's some minor inconvenience. And why not call it "wire placement" or something that makes sense?

So I specifically asked this woman if I would be able to wear lotion or deodorant the day of surgery. She seemed surprised that I asked this question. Why would that matter? She actually asked me that. Um, do I need another ultrasound or mammogram? No, she said. Well, she was flat out wrong. I needed both. Shouldn't the person giving pre-op instructions know what the hell she's talking about? I had been annoyed not to hear anything from anyone by 3 pm, so I called my surgeon's nurse, who called me back and actually gave me the right information.

So we show up at the hospital at 6:30 in the morning and I haven't eaten or drunk anything, including water, since 8 the night before. I'm already hungry. A very nice nurse comes to get me to take me back for my mapping. She was great, and I thought it was funny that she kept saying "if it's all right with you, I'm going to do..." What am I going to say? It's not ok, I want to go home? She was cute though. The mapping starts with "an injection of radioactive dye" into your breast. Think about that. Radioactive. Injection. In your breast. Or, OW. Gabe asked how long the radiation stays in your body. For a week, but you aren't actually radioactive after 6 hours, so you can be around your kids. Awesome.

She told me that the injection "is definitely not fun. It will not feel good, but I'm told the pain goes away in about 30 seconds." Now this is a long, laborious procedure. You get injected and then they start an hour to two hour long process of taking 5-minute xrays of your chest in a fairly claustrophobic machine. For most of the hour I was there, my left arm was over my head. I was "lucky"--they found my sentinel node quickly and I didn't have to stay the second hour. But after thirty MINUTES, when I could still feel the pain from the injection (no anesthesia here), I complained about it. The nurse was shocked. You aren't supposed to still feel that! I had been warned by other women that thin-ness, especially combined with having small breasts, makes everything much more painful. So I asked if that could be the case here. And she said, "well, yes, the women who come in here who are bigger women, or who have very big breasts, they don't feel a thing. It's not fair, huh. Being skinny is supposed to be a good thing, but I guess it won't be for you, at least not today."

Boy was she right about that one.

After all of this high-tech medical stuff, this is what the mapping comes down to: a Sharpie. They take a marker and draw a blue X under your arm. Who knew? When this was done, we went to collect my clothes and my husband and the nurse walked us through the bowels of Prentice hospital. Now this building was completely rebuilt maybe three years ago, and the basement we walked through was dank, decrepit, and looked like a 50 year old CTA subway station. There must be a rule that if it's underground in Chicago, it has to be just short of repulsive.

So we get dropped off at the next appointment and I walk up to the next reception desk. The guy asks me what I'm there for, and I say I'm there to get a wire placed for a lumpectomy. Oh, you're here for a needle loc. I kind of wanted to give him the finger.

Instead I went back into the same waiting area I had gone into for my initial ultrasound, mammogram and biopsy before I was diagnosed. I was ready for surgery, in the sense that I had taken off all my clothes and put on two hospital gowns and hospital booties. But ready is a relative term in this situation.

There was another woman in the waiting area, probably in her sixties. Now those who have had mammograms recognize that all women who are getting them are terrified, and people deal with this in different ways. Many women talk nervously to each other. Me, I read People magazine. This lady was a talker and I hardly got to read a page before she started in on me. She said, oh you look like you're ready for surgery! I said yes, I'm having a lumpectomy. Oh, did you get your biopsy back yet? Is it benign? I thought, Hello, did you hear what I just said? I just ignored her. She went on and on about different issues she's had and how it can be many things that aren't cancer. She asked me again if my biopsy was benign. No, they know that I have cancer. I'm here to get it removed. Then she told me her mother died of breast cancer. Thanks. She asked how old I was, and I told her 34. Oh, my daughter downstairs is 35 and she doesn't even have kids! Right, because this is clearly about HER. When this lady left, she didn't even wish me luck or say goodbye. Note to all out there: don't be like this lady. Fear is no excuse for insensitivity.

After this lovely conversation, I was collected by the same woman who did my initial ultrasound. She remembered me, and that I had been in exactly a month before. She asked me about my baby and my vacation. Either she has a great memory, or us youngins really stay in their minds. I went in for the ultrasound so they could locate the tumors again. This woman is a very good radiologist. It was a fast procedure, and it ended with more Sharpie: this time, black circles to mark my tumors. The whole time I was feeling really emotional, weak, and it was hard not to cry. I didn't expect to feel that way. I kept thinking about my lymph nodes. When she finished, she asked me if I was all right. All I could do is shrug. Not really, you know?

The doctor came in to put in my wire, or in my case, wires. At first she planned to put in three since I had three tumors, but she was able to do two, by threading one through two tumors. She injected me with lidocaine, which definitely hurts (again, an injection in your breast is PAINFUL, and mine are small and I have no extra fat to shield me--ugh). But you're fine with that pain, because when you had your previous biopsy and there was a 14 inch needle involved, you were glad you would only feel the sting from the anesthetic and not that monster. This time, the needle contained a wire that was thread into each tumor. They leave the wire in you, sticking out. So now my breast was covered in marker and there were wires sticking out of me. It has been over a month since I've felt that there was anything remotely attractive or sexual about my breasts, and this did not help. Breast cancer can make you feel like an alien. Marked up, wires and ports in your body, eventually bald, it's like a bad sci-fi movie.

Wires placed, I needed another mammogram. My excellent radiologist did that as well, and it only took a few pictures for her to get it right. She looked at me and said, well, this will be a trick. Yes, I know, us 34bs are hard to mammogram. You have to grab the breast, contort my whole body, and do some superwoman trick just to get in in there. She knew what she was doing though. When she finished, I was in a wheelchair sitting in the hallway waiting for Gabe. I was crying silently, already tired and overwhelmed and my actual surgery hadn't even started.

By around 11 am my fourth procedure was done and I finally went into the pre-op room. My conversations with the nurses and anesthesiologists about past medical history was longer than usual (4 past surgeries, epilepsy, toxic reaction to medication, medical allergies, car accident, etc.) and they kept telling me "huh, that's a lot." Well yes, but now that has all been trumped by CANCER. The nurse who placed my IV was again excellent. I've always had issues with that, and when Augie was born it took five tries and four people, including a specialist, to place an IV for me. When this woman just put it in like it was nothing, Gabe almost had a heart attack. He asked for her name and kept praising her to everyone who would listen. Other than that, I of course don't remember the lumpectomy or sentinel node biopsy since I was under general anesthesia, intubated, and as I described yesterday, totally out of it. What I do remember is thinking that they should have a counselor waiting there for you when you wake up, because there has to be a better way to learn your cancer has spread than to wake up alone and feel that damn drain. I had asked if my husband would be told about the nodes, and they said yes, but it didn't occur to me that he wouldn't be there to break the news--I would find out all by myself, just by touching my chest. What I found out was good news, but so much of the way they do this just seems like torture to me.

I found out later that Gabe and my brother were wondering where I was for a long time after surgery. My surgery was over before 1 pm and the surgeon came out to tell them how it went, that the lymph nodes were clear, etc. They expected to see me soon. But after I woke up, after having the conversations with the nurse about my nodes and stage, I told her I was in a lot of pain. I have a very high tolerance for pain, and in the throes of back labor with my deliveries or with both hips broken, I usually said I was a six on the 1-10 scale of pain. That scale is stupid. I figure you can only be a 10 if you are at death's door, or if you are a burn victim. Burn victims get 10, so after this lumpectomy I said I was an 8. That is a lot of pain for me. She gave me more pain medication in my IV, which made me nauseous, and then the anti-nausea medication knocked me on my ass again, and this whole vicious cycle began which kept me away from my family for a while.

So there's the lumpectomy story: six procedures. Node mapping, ultrasound, wire placement, mammogram, lumpectomy and sentinel node biopsy. For women with positive nodes, they get a seventh procedure with the axillary dissection. Next Thursday I will have my post-op appointment and my official pathology will be available. If I don't have "clear margins" I might have to do all this again. That's not going to happen, right? I could also theoretically be upgraded to stage 2, but that's not going to happen either damnit!

In the meantime, this thing HURTS. Not just a little, not some dull ache. I'm talking searing pain. I can't take the real painkillers. They gave me darvocet and my vision got blurry. I started looking at the side effect list and I saw in huge letters "CONTACT YOUR DOCTOR IMMEDIATELY IF YOU EXPERIENCE VISION CHANGES WITH THIS MEDICINE." OK, never mind then. When I had codeine after my wisdom teeth were removed, I hallucinated, and not in a good way. I couldn't remember who I was or where I lived. This is why I don't do drugs. I think they would kill me before I could ever enjoy them.

So I'm hanging out with some extra strength tylenol and trying not to think about this wound on my chest, sitting right on my muscle, making it hard to lift my arm or put it down at my side so my arm is kind of stuck out half-sideways. I'm bruised and swollen on that side about a cup size, and the gauze is stuck to the inside of my wound where the stitch is, so now it actually looks like there's something wrong with me. At least you can tell when I'm naked, which I haven't been until today when I could finally take a shower and take stock of the situation. Not pretty. But, it makes me realize how glad I am that I didn't have to have a mastectomy. I feel alien enough. Like they said to me, that's a lot! Yes, and it's only just begun, but at least part of it is thankfully over.


  1. Katy,
    It sounds awful. Hang in there as best as you can. Hopefully the tylenol will be easier to come down off of than some of those other painkillers would be, anyway. I'm thinking about you lots and trying to help organize a cavalry, so make sure you ask for lots of help or you will have wasted all of my time (that's a joke, by the way).

    Also, I was talking to someone about your ugly experience(s), and she referred me to Barbara Ehrenreich (who advocates that breast cancer IS ugly and not something to be adorned with cute little pink ribbons) and the Breast Cancer Action website ( If you haven't seen it before, be ready: it's informative, but brutally honest.

    In reflecting on this, if you need something physical to do (when you have more stregth) to express any potential negative feelings about this experience thus far, please feel free to set fire to those silly t-shirts I sent you. I think sending them was just an outlet for nervous energy in the first place, but use them as you see fit. Including fire.
    Lots of love,

  2. Girl, you are crazy. The tshirts are not silly, though I might not walk around with profanity on my chest any time soon. I appreciate all the concern and help everyone's giving me, from near and far.

    And I definitely agree with the site in that there is a lot of breast cancer pimping going on by companies out there. Awareness and education aren't the same thing. People know that breast cancer exists, but as I'm finding, there's so much secrecy surrounding what it actually is and what it means that patients themselves don't even have a clue. For me, that was the worst part of the surgery experience. I just wish they had laid it out for me. I can take it. And the pink ribbon companies could always just give a straight donation to breast cancer research rather than sell more of their products that way!

  3. A friend once was telling me about her husband's surgery and the pain scale, how we kept saying 8, so the nurses thought that meant just a little. Eventually the wife takes a nurse in the hall and says, "He's an architect. He doesn't believe in absolutes. When he says 8, he's in friggin' pain, and you've got to give him something!"

    Glad the news is good, and sorry for the sucky all-day experience. I agree, you look totally hot in the hospital bra. I think that fashion is going to be catching on soon. ;)

  4. Katy: As usual, you show guts and aplomb in your postings, and the writing shows a certain fearless quality together with a desire to helpother women. Publishable stuff. Love, Dad.