Wednesday, 7 December 2011

The difference 24 years makes (Here's what I know)(from Oct. 8th, 2008)

I've always had a strange longing ... or .... I don't know gap ... I feel the lack of Kurt's mom in my life. From my first date with Kurt, when we were getting to know each other and he told me about his mom dying when he was child, I have felt her absence in our lives. I've never been able to imagine anything more tragic than not having a mother.

After Kurt and I travelled to New Zealand and got to know her family, and got married, Kurt told me that he didn't think he would have been able to get married if he hadn't gone there. He felt a connection by being there, walking in the places where she walked; where she grew up. He never visits her grave because he says she's not there. But in New Zealand he felt that she was there.

For me, I needed to know who this woman was. His father rarely, if ever talked about her. The boys, Adam and Kurt, always referred to her by her name, Paula, not as "mom." Kurt has few direct memories of her and Adam, I suspect has none. I realize that any memories Adam may have, would be of her battling breast cancer. So going to New Zealand and spending time with the people who knew her most was the best way I had of knowing anything about her. And I needed to know. I still do. And what better way to get to know a woman than to get to know her sister?

Paula's family spoke of her differently than Kurt's family. They told stories of her childhood and what she was like. For some of Paula's cousins - and maybe even her mother and sister - I'm sure there was a certain distance. Paula was taken away by a handsome Canadian boy and never came back. But they talked about her, and they kept pictures of her around. And getting to know them made me feel like I at least knew something about her.

It always bothered me that I didn't really know what kind of cancer she had. All I knew about her illness was what Kurt remembered (he was 4 when she was diagnosed) and what I was able to glean from an incomplete set of letters that she wrote to her mother and sister during her illness. No one ever said what kind of cancer she had. And I felt like I couldn't ask. I knew that in the beginning she thought she had a slipped disk, and it took a lot of tests before they found the tumor. And I knew from her letters that she'd had a mastectomy some time during her treatment - about six months in, I think. Once I was diagnosed and read all that I read, I knew that it was breast cancer. I have since had confirmation from her sister, Kate.

There is something else I know, which her family may not know - I don't think her boys know - and that is that the way they found the cancer, there never was any chance for her. I know that they didn't know it at the time, because in the letters she talks about getting better. She talks like she has beaten it. And the letters are dated only months before she died. I know this because breast cancer is curable when it is still in the breast. But once it has spread to other parts of the body, it's not. These days they can treat it and people can live a long time with cancer. I know someone who has been living with cancer for 20 years. But back then ... back then you had to survive chemotherapy first.

I think about Paula. I think about Rick. Each time I think about it more and more of the grim reality of Paula's illness falls into place. She would have had surgery to remove the tumor from her spine - by the time they found it she already couldn't walk. She had a mastectomy to remove, who knows how large or how many tumors from her breast


They told me that my tumor - 3.5 cm in diameter, contained in the duct - was probably there for 5 years. A five year old tumor - that doubled in size in three months, and they had to take some of the skin with it ... that's catching it early. I was thoroughly examined over the course of 9 months leading up to only a year before my diagnosis, and there was nothing to detect. So I can't help but wonder how long the cancer was in Paula's body before they found it. She was 30 when she died. It must have been there when she was a teenager.

I have so many questions. I wonder were her breasts lumpy and she just didn't know any better? I wonder did she have any trouble nursing on that side? (Indiana rejected my right breast and that's actually why I found the lump) I'd like to talk to her oncologist... But I can't even ask Rick these questions anymore. I don't think anyone even knows the name of her oncologist.

I always flash back to Kurt telling his dad the news of my diagnosis. That was always the worst part. Even when I was going for the diagnostic ultra-sound - when we still thought it was cheese - when I was sitting in the waiting room and my mind momentarily went to that place. I thought, "How would I tell Rick?" Kurt insisted on telling his dad, alone. And I was in the other room, and heard Rick's reaction. I think Kurt said later that it broke him. How do you tell a man who has lived 24 years in sorrow - who watched his love cut up and poisoned and puking her guts out from chemotherapy? How do you tell a man who watched his lover, his partner, his friend, and the mother of his children, die slowly - that his son is going to have to fight that same fight? In the beginning as I was going through tests and hearing the possibilities, I could tell that Rick did not want to hear about it. I can imagine that in the early eighties there was a lot of false hope. They knew so little compared to now. Even when I was being told that I would have to have chemotherapy, the idea that I had in my head was based on movies from the eighties like "Dying Young." And on Tracy C…..r. Tracy C……..r had Leukemia when I was in grade 5. She couldn't come to school. She was in Children's Hospital and we all wrote her letters and made get well cards. And once in a while she would come to school for a visit. I threw up once during my entire 6 chemo cycled. And I'm pretty sure it had more to do with the Ben & Jerry's cookie dough ice cream then with chemo, specifically. Women going through chemotherapy for breast cancer these days continue to work and look after their families, some of them keep up a version of their regular fitness routine, and lots of women who are currently battling cancer participate in the "run for the cure".

I used to tell Kurt that what happened to his mom wouldn't happen to me. He lives his whole life in fear that I will die and leave him, the way his mom died and left his dad. So when I was diagnosed, I actually brought it up. "I promised you this wouldn't happen." I told him.

But what happened to his mom, didn't happen to me. What happened to me is totally different.

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