Friday, July 12, 2013
Day 1,115: KatyDidCancer. Again.
This is what I do.
This. I write this. But that's not what I mean.
This is what I do. I survive on the unlucky end of the health spectrum, in spite of being a hell of a lot healthier and fitter than many people, and then, I write about it. I did it with epilepsy. I did it with a terrible car accident. I did it with cancer.
And now, I'm doing it with cancer--again.
Up until now, I have done this without looking like the kind of person who should do this. I have always been too young, too rosy-cheeked, too pretty, too muscular, too symmetrical, too SOMETHING to be one of THOSE people, and yet I have indeed been one of THOSE people. I have lived as one of those people whose personage, perhaps, exists to remind others that everything is fleeting and that nothing should be taken for granted. Everything that has happened to me has hardly left its mark.
That is about to change.
My breast cancer has recurred. I don't know much, except that the smooth, round, painful lump (the three things that cancer is not supposed to be) that I felt right by my lumpectomy scar for the first time a little over a month ago is indeed cancerous; it is a tumor approximately 0.5 cm in size, or so they think. The full pathology isn't in, so I don't know if it is still triple negative, but I'm sure it is.
I am having trouble writing this, not because I am too beside myself, too hysterical, but because I am not, and it is hard for me to explain. I feel strangely resigned, strangely at peace. I am not saying that I am OK with this. I am just saying that this is what is, and this is what I need to do, and in some sense I feel that this is what I was always meant to do, because not everyone lives a healthy life and not everyone lives a long life, and there's no reason why I would or would not be one of those people.
I found out about my recurrence today, but I knew it yesterday. My ultrasound, ordered by my breast surgeon on Tuesday after she did an initial ultrasound herself and decided it wasn't good enough, turned into a mammogram which turned into five core needle biopsies right on the spot. This was an exact--AN EXACT--replication of what happened three years ago. The radiologist was different, and you know what?
I was different.
I wasn't in denial. When the radiologist nervously chatted with me about my job as she prepared to do the biopsy, I knew. I could hear it in her voice, I could see it in her mannerisms. She showed me the images. I straight up asked her if it looked like cancer and she lowered her eyes ever so slightly and said "it looks like what you had before, but it could be fat necrosis. Because of your history, I can't tell you to wait it out. What do you want to do? I could do the biopsy today if we can get an order from your surgeon, or tomorrow, or Monday." I said, do it now. I need to know.
But I already knew.
So, I had Gabe call my mom and tell her to pick up the kids. I cried in the changing area of the mammography suite in the way that Katy Jacob cries: suddenly and ferociously and for about 30 seconds until it just stops, and I wipe my eyes, and suck in my breath, and say well. I guess I'm done crying. And then we went out, and I got drunk. While I was in the hospital, I received a voicemail from my gynecologist; I had called him, as he asked, to tell him I was getting an ultrasound. His message said that if I got a call from a number I didn't recognize that night, I should pick it up. Around 9:30, I did. He sounded so devastated. He knew, not because he KNEW, but because I told him the other doctor had said it looked like cancer. He called me sweetie and said he didn't know what else to say. And last night, I could hardly look at my children. I have not seen them since it was confirmed. They should be home in an hour or so and that will be the hardest part.
But so much is hard, that it becomes relative to talk about things that way.
This time, I have not refused to pick up the phone. I have not felt much like talking, but this time, I am different. I knew I could do it, that there was no longer any time nor place for denial or even anger or second guessing or anything else but resolve. I called my mom myself. I picked up the phone when a dear friend called from Seattle after seeing my facebook status "Remember when you told me I looked good bald? Tell me again." I gave my brother the news in person; he happens to be in Chicago for a few days for unrelated reasons.
If you think you have done difficult things, imagine telling your mother and your older brother that you have cancer and seeing the look on their faces and hearing the grief in their voices. Imagine realizing that they feel that they are living in opposite-land, because they are supposed to go through things before you do, including, and maybe even especially, the bad things. Imagine, then, telling your husband, who is beside himself with fear. This time, I took the call from the radiologist myself, because I knew I had cancer, and I didn't want Gabe to hear that on the phone. Last time, I needed him to take down information for me, but I felt this time that that was a small gift I could give to him, the gift of not hearing me hear this news. When she called me and said "we have your results back. I am so sorry. I know this isn't what you want to hear. It's a recurrence," I cried, Katy-style, again. I raved a bit. And then, I did what needed to be done and I asked the appropriate questions. And eventually Gabe opened the door and I nodded at him and saw that crestfallen look on his face, a look that I hope none of you ever has to witness on the face of the person who has pledged his life to you.
Imagine doing that twice.
Imagine having to tell your children. I plan to do that myself, on Sunday, after they have had the chance to go to the all day block party where we used to live. I can imagine telling Lenny. I cannot even began to imagine how to tell Augie. He was just a baby. And now he still is, but not really, and he knows things, and of all of us, I think this might be the hardest on him. You know what a parent's love is when the hardest part of admitting you have an illness that might kill you is the sadness that they will feel over potentially losing you. And somehow, I am comforted by the thought that they have almost always been children with a mother with cancer, so they know how to do this, and they have a strength that other children don't have, and I gave that to them, whether I wanted to or not.
I told Gabe that he has to get it together, that I have to know this time, really KNOW, that he and the kids could get along without me. I told him that I wished he had never had a vastectomy because now he can't build a family with someone else. I told him that I wanted to see the kids grow up, that I wanted to grow up, grow old even, and he just cried and cried and said that I would, and I said that maybe this is what I do. I was not saying these things to be dramatic. I was saying these things because they need to be said at some point and I am strong enough to say them right now, today. I am not concerned with protecting his feelings. He said this time he might have to get a barber to shave my head and I said no. You will do it again like you did it before and I know that now. And he is Gabe, and he has cried, and sent cryptic and terrified emails to people, but this time, he too is different.
We have done this before, and now we know we can do it again.
Of course, the thought of other surgery options, why did I do a lumpectomy, maybe I should have never taken a drink, maybe it's sugar or lack of vitamin D, all of that began to crush me. And then I spoke to the doctors. And the surgeon reminded me that I had clean margins after my last surgery. She reminded me that if my cancer was bound to come back, it was better to come back in the breast than in the chest wall, which could happen post-mastectomy. She said, this shows your cancer was aggressive. Because you did chemo and radiation, and it still came back, so you did not make the wrong choice. You treated the cancer you had then. And you will do that again.
When the surgeon called, she was very businesslike, as usual. She cares, I know she does. But how else could you deal with this every day? She started off by saying, now have you ever met with a plastic surgeon...and I immediately cut her off, something I rarely do to doctors. And I said this:
I met with Dr. X three years ago. I am not doing reconstruction.
The surprise in her voice was evident. Um, ok, so you don't want to do it. OK.
And I realized that I knew instinctively what was behind her initial question. I knew without being told that I have to get a mastectomy now, no other option. And if I am going to opt for tissue expander surgery, they coordinate that with the plastic surgeon at the time of mastectomy because it is easier to do both at once.
And I'm not doing it. Not if I need a single mastectomy, not if I need a double. Later in the call I told her that the plastic surgeon had told me I wasn't a good candidate for the reconstruction options that take tissue from your body and make it into breasts, because I am too thin. She agreed. So, I said, that leaves tissue expanders and implants. And I know how long that takes, I know how many appointments and surgeries it is, I know so many people who have had complications, and I don't have time for that, I don't want to do it.
And then she began to speak with me freely, as if I were not someone from whom information needed to be kept, but rather someone who could take it, because I understood already what was happening. I do not yet know what I am facing, because I have to do all of the tests to see if I have mets, now that I had a recurrence. That is the one place I am not allowing my mind to go, because I am not willing to let it go there. I know I need a single mastectomy, but I am not sure about a double. I am strangely at peace with the idea of my soon to be disfigured body. Right now my breasts look so wonderful, so healthy. But I have never cared greatly about that, and again, perhaps I am one of those people destined to look "other" at the same time that I look "normal" so that hey, maybe you should think about that.
What I'm dreading is chemo. I don't even want to get into that. There is a very very slim chance I could avoid chemo but I'm sure to be triple negative again so it's doubtful.
I should say, as an aside, that all of this has happened exactly three days after I announced my resignation for my current place of employment where I have been for 7 years and accepted another position, based in another state (though I will physically remain here). The timing is just so surreal, that it borders on the absurd.
Perhaps the last three years of writing this blog has set the stage to prepare me for this, because I have put everything out there, laid my feelings bare, announced time and again that I don't believe that cancer cares about the content of anyone's character. Perhaps I do not feel the need to justify my decisions nor defend myself nor feel guilty because of this, this forum, that has enabled me to be real, and to see for myself the impact that realness has had on other people.
I curse the fact that I am in this place, but it would be false to say that I cannot believe it. Of course I can believe it. I have feared it for more than three years. Three years ago, fear encompassed me. I was afraid of being BRCA+, I was afraid of finding out my stage, I was afraid of surgery and chemo, I was afraid of being bald, I was afraid of mets, I was afraid of dying, I was afraid of the unknown. That fear was so overwhelming, so I sat down at a different desk in a different house and began writing this, and admitted to that fear, and by writing it, by weaving all these strange stories together and seeing the larger picture, something has happened.
I am not afraid anymore.
Posted by Katy Jacob at 8:32 PM