Sunday, November 26, 2006

On Strangers, Acquaintances and Friends

After posting the previous to my blog and mentioning my situation on a couple of the knitting lists, I was flooded with emails. Some were from women who had also been through the long wait until they found out that they, too had a negative biopsy. Others were from women who had positive biopsies and survived subsequent surgery and treatment. One was from a woman who has had breast cancer, as well as cancers in three other sites in her body. Several were from women who told me that they knew everything would be fine, they had added me to their prayers. I mentioned my negative result on the knitting list that serves our local guild, and at the Thursday meeting several women come up to me and told me their breast cancer survival stories. These were all women I have known for a couple of years now, and except for the occasional one, I never knew that they were breast cancer survivors. Another guild member told me her friend had just been diagnosed with breast cancer. I was stunned by how many people I heard from who have been through all this with me, with their own positive or negative biopsy results. I was and am deeply moved by how many had added me to their prayers. The women from my book group - which I had to miss this month because it was the day after my surgery and I was still woozy from the anesthesia - got together and gave me beautiful flowers in a gorgeous glazed jug, as well as a basket with ‘a taste of book group’ including a bottle of wine, a wedge of brie, some artisan bread and gourmet chocolates. And they all sent me emails before my test to tell me that I was in their thoughts and prayers, and emails after to tell me how relieved they were to hear of my great result, with one woman planning to bring champagne to our next meeting - at my house - so that we can all toast my happy news.

I was raised in a small town in the late 50s and early 60s. Those of you who are younger can’t realize, but those who are my age or older know that this was a completely different period of time. We were raised to be polite to our parents, our elders, our teachers, to treat anyone we met with respect and to behave with decorum, knowing that our behaviour reflected well or ill on our family. We were also taught from an early age to never completely trust strangers. I remember at about 5 years of age, a friend of mine and I were playing in her front yard when a young man stopped his car and offered to take us for ice cream. Ann, a year younger than myself, started to climb into the car, but I was screaming so loudly that her mother came out of the house on a run and the young man drove off. I was completely convinced that I would be on the national news that evening for my bravery and quick-wittedness in saving my friend from the Demon Stranger. Much to my disappointment I was not. But the message was clear: Strangers are not to be trusted, and my early experience reinforced that.

Because the neighborhood was so small and the times were what they were, you knew everyone’s parents. Their parents knew your parents, your siblings knew their siblings, your teachers had taught your siblings before you, and there really wasn’t much wrong that you could get away with - it was an extended network that comprised your entire neighborhood. If you and your friends were riding your bikes up the highway into town without permission, believe me, someone’s mother drove by and saw you, and called your mother when they got home. I once notoriously was busily peddling my trike to town with a few pennies clutched in my fist to buy my brother a birthday present when I was spotted by a family friend along the highway and captured to be returned home to a serious scolding and rare spanking.

The families on our small street - five in total - were all of an age. Our parents were contemporaries, we kids were all in the same age range, and we were in many ways like one large family. I knew that if I behaved badly at the Bunk’s or the Petty’s, they could and would scold me as if I were their own child. And at the same time, and more than that, we had all the good times a large family had, with large summer cook-outs that started with the Dads all gathering in early afternoon to talk. Maybe one went to another’s house to borrow a tool or ask for a hand with something they were working on, next thing you knew they were all standing around talking and laughing, tasks forgotten, and the cold beer would come out. Then Moms were out in the yard, we kids were running around whooping and barbecues were fired up, someone ran to the store to fetch some extras, and food was being pushed at you from all directions. On Christmas we all visited from house to house to view presents and to eat wonderful food with each other.

Last summer my husband and I returned to visit my siblings back east, and while we were there one of the Moms - the woman who taught me how to knit, made us all laugh til we cried and made the best Italian food that I still judge all other Italian food by - died after a short illness. My sister Mary and I went to the funeral home for the wake, and I know Annie of all people would understand and be glad when I say that her wake was one of the best parts of my trip. To see all of our old neighbors nearly thirty years after I left was so wonderful. The parents from across the street now completely white-haired, the neighborhood terror a middle-aged man, his sister a mom herself. Annie’s family had an old photo album out for all to look through, and on page after page all our families were intertwined.

I left home in my early 20s never thinking I would ever go back, or ever want to go back, and made my way in a new place with new people around me. But I know now I have no other home, and these people are my family just as much as my own parents and siblings are.

I started to tell you all this because I wanted you to know what my concepts were of the meaning of the words strangers, acquaintances and friends. And all my moving from place to place didn’t change that. But the internet did. I married a man that I met on a mailing list of Aromatherapists. I made good friends through such lists, visited them, met up with them at conferences, shared laughs and stories and good times, truly stretching my ideas of who friends could be and where they were to be found. And here I find those old concepts are stretched and broken by what I have been given by this vast sisterhood of women. Few of whom have met in the flesh, all of whom are a family that stretches from Canada to Mexico, from Hawaii east to Finland. We share our stories of triumph and loss, births and deaths, illnesses and recoveries. Projects started and stalled, projects finished, projects lusted after. Stories of our children, our parents and our spouses. We are joined together by the common thread of our gender and the bond this neccesarily gives us.

We wear our scars for each other to see, and we wear them proudly, like the scars of old whales that tell the stories of battle and more importantly, of survival. I bear a new scar now to add to my others, and somehow this is the scar of which I am most proud, although it is not as hard-won as those of many of my sisters. I add it to the scar near my left eye and the divided cheekbone I still bear from my mugging, the scar on my leg from being attacked by dogs as a child. They don’t disfigure me, they are medals of war, and evidence of survival. They add to me just as my laugh lines and white hair does.

Years ago I went to visit a psychic who looked at my hand and laughed. She told me that as a child I was not meant to survive, and because of that I had illness after illness - which I did. But that I was too stubborn and refused to go, and that was the only reason I am still here. Supported along the way by strangers, acquaintances and friends.

Saturday, November 11, 2006

On Breast Cancer and Life

When Jill Caroll was finally released from captivity after being kidnapped in Iraq and held hostage for so many months, started serializing her story of her experiences. It was obvious that she was in the process of writing a book about the ordeal, and it is my fervent hope for her that she sells enough copies that she need never worry about anything ever again. I was asking my sister if she had been reading the installments each day and told her that in my opinion, if you can't take a horrible experience and turn it around to make something good out of it, then it is time to hang up your Big Girl shoes.

I don't yet know if this is the beginning of my series telling of my process through breast cancer, or if it is the long short story of one of the greatest scares of my life. I don't yet know the outcome. A week ago I couldn't write anything without it being about this and how freaked out I was. Now I am able to sit down here and talk about it without my post being one long terrified, tear-filled shreik of No, No, No, No NO!

A year ago I went to my gynecologist because I was concerned about two small open areas on my right nipple that were draining and would not heal. Don't worry, she said, It's not breast cancer. But go see this surgeon just in case. I finally got in to see the surgeon in early January. Don't worry, he said. It's not breast cancer. In fact, I don't see any reason we need to do surgery. Go have a sonogram done of the area just in case. Don't worry, the radiologist said after admitting that he had never seen anything like this 2 cm mass in the nipple tissues before. It's not breast cancer. Phew, I thought. Until my mother pointed out that A) I'm not getting any younger, and B) This obviously wasn't going to go away on its own. So back to the surgeon I went, and in early March he did surgery to remove a benign tumor from the nipple with two incisions, one on the underside of the nipple, and one on the upper side.

But the upper incision never healed, and I spent several months going back to the office every two weeks only to be told by the PA, It looks great! Come back in two weeks. Two weeks later: It looks great! Come back in two weeks. Finally in July I said, no, it doesn't look great, it isn't healing, it's not going to heal, and we need to do more about this. So in mid-August I went back into surgery while they 'freshened up the edges' (I love the euphemism) and restitched and glued the daylights out of the incision site, then wrapped me tightly in about 2 miles of elastic bandage. I told my sister that I was really glad he hadn't a nail gun in there at the time, because I fear he would have used it.

So five weeks go by as we wait for the glue to come unglued and see what the self-disolving stitches have wrought. And one day as I was in the shower my incision popped open again, and I was right back to square one. Back to the surgeon's office I go. Say it with me - It looks great! Come back in a week. Having by now got the gist of what was to come, I went instead to my primary doctor, a woman who freaked out when she saw my nipple. It doesn't look great. You need to see a breast specialist. And after 9 months of seeing gynecologist and surgeon alike, this was the first I'd heard of Paget's disease, a rare form of breast cancer that only occurs in the nipple.

And on the 1st of this month I went to see the breast surgeon. Who was very concerned that the open areas had never been biopsied, and could not understand why I wasn't healing. He told me we had to do a biopsy on the one remaining open area, and we had to do it soon. We have to rule out Paget's disease before we can think about anything else. Of the list of things that might cause my symptoms, Paget's, he said, is numbers 1 through 10. We can't think about number 11 until after the biopsy. He kept asking me, In this year, no one has said anything about this? No one has been concerned about this? I held up all through the drive home. I stopped to pick up something for lunch. I held it together. And when I called my Mom who was waiting to hear what the surgeon said, I broke down and sobbed like a baby. How do you tell the people you love about something like this?

After 6 days of roller-coaster emotional trips, this past Tuesday I went in for another biopsy. I'm told so far that he did find another benign tumor while he was in there and that poor circulation looked to be the reason the incision site had never healed, but we have to wait for the biopsy results before we know anything for certain. His office promises to call as soon as they know. So I wait. My husband waits. My parents wait, my sisters wait. My friends wait.

Being the squeamish one in a family with a history of 160 years of nurses, I finally take a look at my breast in the mirror. My nipple is gone. Where it was is now bordered by black stitches. I wrote in email to my family that I will entitle my autobiography 'No More Wet T-Shirt Contests For Me!' or 'Boy, Am I Ever Going To Look Funny In Cold Weather'. I'm trying to see the funny side to it all. I'm trying to deserve my Big Girl shoes.

Although I am calmer than I was a week ago, my emotions run through a whole gamut of thoughts and fears and plans and 'not making any plans'. At one moment I am sure that I do have breast cancer. It explains all the symptoms, and it sure seemed as though the breast surgeon was pretty concerned that this is what has been going on. The next moment I am convinced that it isn't breast cancer. That maybe I am just being an alarmist and this is simply another benign tumor and nothing else. I'm convinced that when a negative result comes back from the biopsy that everyone will think that I have been playing this whole thing up for drama and attention. Then I am back to realizing: This does happen to women. Every day. This could be happening right now to me, too. Statistics show that a woman is diagnosed with breast cancer every two minutes. Every two minutes. That one in 7 or 8 women will have breast cancer in their lifetime. I know more than 8 women without breast cancer. Am I the statistic? Am I the one that lets them off the hook?

I don't remember now what the trigger to this thought would have been, but ever since childhood I have been convinced that at age 50 I would have breast cancer. But that I would survive. And I knew this at a time when women didn't survive breast cancer very often. So I know that if my result should be positive, I will survive. I will survive. I just don't look forward to the process of getting from Point A to Point B. It could get pretty ugly. Or I could be like my friend who on hearing about my upcoming biopsy, told me that she had a lumpectomy and was on tamoxifen for 5 years. No chemo, no radiation, no mastectomy. I know lots of women who have survived breast cancer. I will survive.

It is necesary to remind myself that this isn't happening only to me. It is happening to my husband, too. To my family and friends. I have always been a very private person, and I have had to talk this over with all of them, one by one. I've had the have 'the' talk with my husband, who doesn't like to talk about emotional things. Don't worry, I told him. No matter how bad it might get. I will survive.

Until the results come back, then, we lead a somewhat normal life. I do the laundry. I clean the house, make the bed. Work on my knitting projects and Christmas gifts. Think about what to cook for dinner. Listen to the incredible beauty of Yo Yo Ma playing the Bach concertos. We go to the library. And we wait.

And I have made it a point to make sure to appreciate all the little details in life that we all over-look every day. The birds eating the scattered seed in the front yard. The feel of carpet on bare feet. The way the sun comes through the windows. The feel and colors of wool. The smell of food cooking.

A year from now I will have either gone through this process or not. I may by then have earned my pink t-shirt. Lost weight. Lost my hair and have it grow back in dark and curly. Lost more of my body to surgery. Earned the right to wear my Big Girl shoes. Or I will hear in a day or two that this is all much simpler than our worst fears, and that I have dodged the scalpel once more. But I hope that in a year's time I still appreciate the details of life the way I do right now, at this moment. That would be a wonderful gift to take away from this experience.