Cancer Doesn't Play by Any Rules

March 16, 2007. The day of my cancer surgery. The first step in a grueling journey.

We (my husband and I) had to be at the hospital at some inhumane hour - if I remember right, it was 5:30 A.M.. This was because the doctor was planning a sentinel node biopsy to check my lymph nodes for cancer, and the lead time for this procedure was about two hours.

Lymph nodes form a chain, like little beads on a string. About 90% of the breast's lymph fluid drains to lymph nodes in the underarm area. The first lymph node the fluid reaches is called the sentinel node, and doctors have found that if there is no cancer in that first node, then the lymph nodes will be cancer free. Hence the 'sentinel node biopsy'. About two hours before the surgery I was injected, with three shots around the nipple, with radioactive isotopes. Then we waited for these to drain through the lymphatic system into the underarm area. Before the surgery, I was injected with blue dye, which would color the lymph nodes blue. The doctor found the sentinel lymph node using a Geiger counter (tick, tick, tick) and where the ticking was the loudest, he cut, and looked for the blue node. Really a swift little procedure, if one can get over the fact that the stuff they put in my body had to be carried in a lead box. Hmmm...

I have very clear snapshot memories of that day. After being injected with the isotopes, I went back to pre-op to wait, and since I'd been up since before dawn, I fell asleep. When my surgeon came in to talk with me, and I jerked awake, he said, "Were you sleeping?" I admitted I had dozed off and he said, "People don't sleep in here." Pre-op was a very noisy place, and thinking this is what he meant, I said something about being able to block out the chaos. But I had misunderstood him. He meant that people didn't sleep before cancer surgery because they were afraid. And my clear memory from that moment was that I was totally unafraid. I was resigned to do what must be done, I wanted the cancer out of my body, and I was confident that I was in God's hands. So I slept.

Another snapshot memory: when my anaesthesiologist came in to have me sign the consent form, I noticed that she was about nine months pregnant. Truly - she looked like she was about to give birth. So I casually asked, "When is your baby due?" She laughed, said two weeks, and promised me she wouldn't deliver in the O.R. during my surgery. And my thought as she left was, "Like you can control that..."

My cancer surgery was scheduled to last about four-and-a-half hours. I had chosen to have immediate reconstruction, after a bilateral mastectomy. The sentinel node biopsy would be done, and if the node was positive for cancer, an axillary dissection would be done to remove a pocket of lymph nodes. Then the mammary tissue would be completely removed, along with some skin and both nipples. Then the general surgeon would hand off to the plastic surgeon, who would place tissue expanders under the chest muscle on both sides, partially fill them with saline, and then suture the wounds.

I knew my family would be told during surgery if the lymph node biopsy was positive or negative. If the biopsy was positive, the surgery would be at least an hour longer in order for the doctor to do the axillary dissection. When I woke up in the recovery room, I of course didn't know what had happened. But the biopsy is what I was thinking about when I went to sleep, so the biopsy is what I was thinking about when I woke up. I had every reason to believe the biopsy would be negative. The amount of infiltrating cancer cells in the breast was very small. In fact, the pathology report read that a "trace amount" had been seen. So, I was expecting the biopsy to be negative. My recovery room nurse told my husband that I asked her three times about the biopsy results. The third time I said, "Am I dreaming, or did you tell me my lymph node biopsy was positive?" And she called me honey, and said I wasn't dreaming.

I squeezed my eyes shut and felt tears fall down the side of my face into my ears. I really couldn't believe it - it was the worst news. I thought my surgery would be 'it' and now I knew I was probably facing chemotherapy. When the orderly came to wheel me to my room, I told him my biopsy was positive. And I told my nurses, and my husband, who already knew. When the doctor knew there was cancer in the node, my family was told, and also informed that my surgery would be longer, actually lasting six hours. And then when my parents came in I told them, and other family members, and all the while I was crying, crying, crying. At some point I caught my husband giving me a sidelong glance, full of concern, like I was possibly having a breakdown. "Are you okay?" he asked. No - I am so NOT okay. During the night, I remember a physician's assistant sitting on my bed, holding my hand, as I bawled about my lymph nodes. I simply could not get a grip. I found out, much later, that one of the side effects of anaesthesia, experienced by some people, is a reduced ability to control emotion. In reality, it made me a basket case, for about a day. When I woke up the next morning, I looked at my husband, who had spent the night in my room with me, and said, "I'm okay now."

The day after my surgery, my plastic surgeon came into my room to check on me. He asked how I was and I said I was so, so disappointed. I know he thought I was talking about my reconstruction, because he (rather gruffly) asked what I was disappointed about. And I told him I just couldn't believe my lymph nodes were positive. His face softened and filled with compassion. In that instant, I felt myself become a real person to him, not just a patient, and he became my ally. And he told me, " Cancer doesn't play by any rules. Concentrate on doing what you have to do to get well." I realized that I was playing a game with an opponent who cheats. I would never find a sense of fairness in this experience. And it helped somehow to accept that.

In spite of an extreme level of pain, and muscle cramping across my chest (no fun), I had an overly cheery nurse drawing smiley faces on my board and writing under patient goals 'going home today.' I must say, throughout my cancer ordeal, my nurses were, for the most part, absolutely wonderful. This nurse, however, failed to actually see me. When I told her I didn't think I was ready to go home to my children, she just smiled, assured me I was and that I'd soon be up on my feet and out of there. So I told my plastic surgeon, my newest ally, and the next thing I know, said nurse marches into my room, without looking at me, and erases the smiley faces on my board. Then she changes patient goals from 'going home' to 'pain management', turns on her heel, and marches out. I stayed another night, which made all the difference in the world. I felt like I could present a happy face to my children, which is critical, as any mother knows. Three cheers for Dr. H, the doctor who made me cry (see the post Dignity), and the doctor who helped me stop crying.

Thinking

A couple of things have happened since I last posted that have gotten me thinking. The first is that a girl from my high school graduating class died just under two weeks ago. She died of breast cancer. Since my class had over 600 people, I didn't actually know her. I saw some postings about her death on Facebook, and when I read them, I sat at my computer and cried. I cried for her because I know what she faced as this horrible disease slowly sucked her life away. And I cried for her family who is feeling cheated because someone they love was taken from them too soon. And if I am honest, some of the tears were probably for myself, because this evil has touched me and left its ugly fingerprint on my life.

When I was first diagnosed with breast cancer, my encouraging and loving friends said many things to me, like, "At least they caught it early," and, "Breast cancer is so treatable - it's not a death sentence," and, "Even women with positive lymph nodes end up being completely fine." All of these statements may be true on their face, but I am surrounded by stories, like the story of this girl from my class. Or the story of my Aunt Ruth who died of breast cancer in June, 2009. Or the story of the woman I prayed for at church Sunday whose breast cancer has metastasized to her bones twelve years after her original diagnosis. Breast cancer is a sleeping giant. Unlike other cancers, it can lie dormant for several years and then, suddenly and unexpectedly, rear its ugly head. For anyone who has been personally touched by this villain, life becomes an eternal game of watch and wait. My doctor expects me to do a self-exam of my chest wall and axillary and super clavicle (under the arm and under the collar bone) lymph nodes every WEEK. What exactly I'm supposed to feel, I don't know. It feels lumpy and bumpy to me because my anatomy has been completely altered, and I have scar tissue. When I tell my doctor this, he says what I am looking for are changes. So I find myself thinking - Oh, oh - was this bump here last week, have I felt this before, is this new, has this changed? I've decided the anxiety isn't worth it, so I simply don't do the exam.

The second thing that has happened is that I had my final medical procedure for breast reconstruction. It has been a long road starting with my cancer surgery in March, 2007, and ending Wednesday with surgery number seven. It was surgery per se, but it didn't even involve cutting. I had areolas tattooed onto my body - something I never really envisioned happening, and didn't even know DID happen until it happened to me. As I stand in front of the mirror and look at my 'new parts', I wonder, is this really me? Did this happen to me? I feel far removed from the brutality of what I went through. When I hear someone else's story, for instance, a woman facing a mastectomy, I think, "Oh, the poor girl, how is she going to cope with that? Oh wait, I did that. I'm okay." It's almost as if I forget (almost). Or when I pray with someone who is facing cancer and all that means, and my eyes fill with tears and I choke up, and I think, "Good grief, what is your problem? Oh, right, I've been there, I know what they're facing."

When my husband and I sat in the restaurant after my first plastic surgery appointment, we felt shell shocked. It was hard to grasp that I was going to be dissected and put back together like Frankenstein. I now recognize that the emotion that so overwhelmed me outside my doctor's office, that I wrote about in my last post, was grief. I was grieving the loss of my body, the loss of control, the loss of my life as I knew it. But at that moment, all I knew was that I felt raw, ripped apart, beat up. When I compare that with the distance I now feel, I am thankful that God has created us in such a way that our memories fade, become soft around the edges. We can go to them and pick them up, when we want or need to remember, but for me it's like I'm remembering someone else's life, or some story I read. I no longer feel the horrible, overwhelming emotion. This is good, it's a part of becoming well.

And so I've been thinking. I choose not to be filled with sorrow over all I've lost, or anxiety about what might lie ahead. I try instead to be filled with joy, to obey the command, "Rejoice always!" My mantra is Find Your Joy, and so I find mine, in my family, in my friends, in my faith, in my Lord, in small things, in kisses and "I love you," in togetherness, in laughter, in hope. Where do you find your joy?

Dignity - Mar, 2007

After making the decision to have a bilateral mastectomy, but before my cancer surgery, I had a consult with the plastic surgeon to discuss the possibility of immediate reconstruction. I had done some research, so I basically knew what my options were. They could cut my belly, creating a breast mound with fat and muscle from there. Not appealing, since I would never again be able to do a sit-up. They could cut my back, tunneling latissimus dorsi muscle, skin and fat from my back under the skin of my underarm, creating a pocket in front to fill with an implant. Not appealing, since my back already would ache when I played the piano for too long, or did dishes. The third option was to place tissue expanders under my chest muscle at the time of my cancer surgery. These would be like balloons that would be gradually filled with saline until they were the appropriate size, then a second surgery would be done to replace them with silicone or saline implants. This seemed like the best option to me, because it was the least invasive, it involved the least amount of cutting and pain, and just seemed to be the least horrible alternative, realizing, of course, that none of the alternatives could actually be classified as good.

So I naively went to this appointment, thinking I would tell the doctor what I had decided, he would tell me what to expect, and I would go to breakfast with my husband who had thankfully come to the office with me. I had no premonition that this was going to be one of the worst days of my life, worse even than the day I received my diagnosis, worse than talking to my general surgeon about the cancer surgery itself. I didn't know what to expect, so as the meeting with this doctor began to play out unexpectedly, I struggled to maintain my composure and hide the fact that I was thrown completely off balance. Although I eventually developed a rapport with my first plastic surgeon, and ended up liking him immensely, at this moment, on this day...well, not so much.

First of all, they have me strip and put on a gown - they allow me to keep on my socks. It's very difficult to feel strong and in control when the person you're dealing with is dressed, and you're not, so I'm already feeling vulnerable. The doctor comes in, shakes my hand, and lays me back on the table so he can examine the affected breast. Then I stand on a stool so his face is chest level, he opens my gown, takes out his tape measure and pen, and starts to make and record very precise measurements of everything. He is very matter-of-factly discussing my breast shape, size and position, the amount of belly fat I have (to determine whether I am even a candidate for the belly-cutting surgery), and my options. Add to this the fact that his nurse and my husband are in the room, and for everything the doc says and does, he turns to my husband to make sure he's following, and now it's starting to feel a bit like a science lecture, with me playing the role of specimen. I find I can no longer look at him while he's talking to me, and so I find a spot on the wall where I can focus. My husband asks if the doctor has any pictures of results that we can see, and he hands us a medical textbook to look at, warning us to avoid the pictures of actual surgeries. And there we are, looking at headless pictures of topless women, each with one real breast and one reconstructed breast, trying to decide which we like best. I have an otherworldly feeling, like I'm glimpsing myself doing this in some parallel universe, but it's not happening in my real life.

And then, before the meeting is over, they have me drop my gown and stand completely naked in front of a blue sheet, so the nurse can take photographs. I never did get an adequate explanation of why it had to be this way, why I couldn't put on my jeans, or even my undies, for this part. She assures me the pictures will be from the neck down, will never find their way onto the Internet, and are for their securely kept records. My throat starts to ache with the strain of unshed tears. I find I am violently gritting my teeth, and very deliberately blinking to keep the tears at bay. They let me wrap the gown back around myself as the doctor finishes up what he needs to say, but I no longer comprehend the words. I know if I speak, I will lose it, so I'm mutely nodding when it seems appropriate, but mentally I'm yelling at him, "Go, go, go, go, go..." I desperately want him gone - in that moment I despise him, I despise the room I'm in, and it's taking everything I've got to hold it together. But I am bound and determined - I will not cry in front of this man. He has measured me, marked me, photographed me, and I know if I cry, it will be the thing that finally shatters around me any remaining dignity I have.

Finally, it is over. I'm alone in the room with my husband and I raise my hand, signaling to him, "Don't talk to me - don't touch me." I put on my clothes, controlling the urge to bolt. I try to walk out of the room at a normal pace, when my brain is still screaming, "Go, go, go, go, go..." It's at this point, the moment I start to move, that the turmoil within me reaches a saturation point and I feel the tears prick in my eyes. No amount of blinking can hold them back now, and my husband pulls me toward him, protecting me with his body and arms from all the people who have to step around us, as I let the ugly sobbing run its course. And then I say the only sensible thing I can think of. "Let's go to breakfast." And so we do, gradually steering ourselves back to a sense of normal.

During this time, in an attempt to keep my perspective, I would joke that at least I wasn't losing something vital, like my nose or my right hand. But I was losing something, despite the joking. I will never be thankful for my cancer. I will never count my cancer as a blessing. But I do recognize that this ugly and difficult path, although full of loss, has brought me somewhere, and that somewhere is a good place, a place where I recognize that what I've lost wasn't necessary for me to live a life full of joy and purpose. And that, is a blessing.