So my mom had the BRCA gene and died and her mom also died of breast cancer. So for a long time, I was thinking that the gene was transferred down from my mom through her mom. But her mom's mom, my great grandmother, my Nana, did not die of any type of cancer at all and I don't think Nana's mom who I never met, my great-great grandmother, Pauline, died of cancer either. As I recall, Nana (her name was Adele by the way) died from old age and possible Alzheimer's disease, which was no less sad because her last years were spent in a nursing home in Greenbrae which my mom often took us to visit, which was really hard for us, because as young girls it was a smelly depressing place and our little self centered brains really couldn't absorb the situation, which was our Nana, sitting all day, just sitting, alone in a room to die. Ugh. This is especially hard to think about because Greg and I just spent an hour on this hot sunny day lounging in bed with the fan on turbo blast going through old photos, I think to try and find Sadie among our relatives, and I found this old World War II pamphlet I saved when my Aunt Robin was selling her house in Larkspur and getting rid of a bunch of old photos and stuff. It was all about 'the fight on the home front' where my Nana, the same one in the nursing home, was commended for her work for the soldiers overseas and for being a wonderful mom, wife and grandmother too. And there was this photo of her, at 47, with her hair all done up and a buttoned up navy housedress, so fastidious and productive. There was no way her and my great grandfather Emil ever lounged about on a Tuesday afternoon in bed looking at old photos, I am fairly sure...
But I am seriously digressing.
The point is, I realized this gene, this BRCA1 (or is it 2? I must make an appointment with the genetic counselor) gene was NOT passed down through my mom maternal side and here's why: though my grandmother (mom's mom--her name is Patricia, by the way), died of metastasized breast cancer, it didn't affect the same organs. I think it went to her brian and her lungs, but not her pancreas or her liver like my mom. The other day, when my cousin Anne was here she recalled out loud how my grandmother's hands were always covered in shellac. She was way Martha Stewart before Martha was even alive. She was always doing projects or crafts--covering things with spray paint, shellac, varnishing old furniture and painting, glueing, glittering and embellishing with beads, doodads and rhinestones. And these were in the days when there was no such thing as Cancer Warning labels. I bet she never wore a face mask once when spraying that stuff around. I also remember her always on a diet, drinking shakes involving fake sugars and chemicals. Which isn't to say I just figured out how my grandmother got cancer--but it's food for thought. Here's me talking to my grandmother while on vacation in the Bahamas. I love the look she is giving me. It's almost like she is saying, 'Dear, you know you will be dealing with cancer too in twenty years'. Notice the wig she is wearing? It's strange looking at this photo. Her cancer was of no interest to me at this time. A disease of the aged. Ha! If I had known then I would be in the same position one day, maybe I would have been paying more attention to what she was going through. That's Hannah in the background by the way....
So, I look towards my mom's father's side. My grandpa David. He had a sister. A sister Sarah. Sarah worked for Elizabeth Arden at one of those department stores in the city--like Gumps or Saks. Anyway, she also played the piano like me and took me to the symphony a lot. I remember her well. While going through the old photos, I found ONE photo of her and this one photo I feel obligated to post even though it's not really a photo of her, but of me and my Aunt Robin after one of Nina's ballet recitals. We are giving the camera attitude. That's my Aunt Sarah scratching her nose in the yellow sweater. That's her brother, my grandpa David in the far left corner in the brown suit just barely in the photo..
The point is, she got breast cancer, young. And she beat it. Even then, she beat it. And then, in her seventies (which seems really old to me by the way), she got pancreatic cancer and that's what killed her. So then my mom, her niece, also gets breast cancer, young--say 38--and she beats it. And then later, when my mom is 53, cancer comes back. But it's not breast cancer, it's pancreatic cancer (my oncologist is pretty sure) and this is what killed her. So then there is me. I get breast cancer, young. I am 34. And I beat it. I am cured. And then? And then WHAT?! I just got my breast removed probably for no reason because it isn't breast cancer that gets us. It's pancreatic cancer and I don't think there is any way they can remove my pancreas in avoidance of this fact. So, do I have 30 or so more years like my Aunt Sarah, which would be GREAT! Or is this like some sort of cruel time sucker and as the gene gets inherited down the family line, it kills earlier and earlier. My mom had twelve years after she beat breast cancer, do I have 8? So I die like when I am 44? And Sadie is 8 years old?! This is why I cannot celebrate. I am stuck in this vicious cycle of when and why. So I am complaining. A lot. My biggest complaint is Greg and how he takes care of himself. I mean, he's got 19 years on me. If he dies like at the regular old age of say 74 that means Sadie is only twenty years old and she just lost her dad. That sucks. I know. When you lose a parent young like that, your whole life changes. But if she not only loses her dad, but her mom is gone too? Well then, you have a recipe for crying, which is what I do. A lot. And even though I know my sisters would be here for her, and her brother Jeff and her uncle Dan and cousin Amara, and all my girlfriends, NOTHING, absolutely NOTHING can replace a parent. I know this. I lost my mom at 26 and I know this. To lose one any earlier is horrifying to think about. To lose both is incomprehensible. I feel irresponsible for having her. Like I have set her up for a world of sadness and she is only five months old. This is a waste of my time. I know this, but still, I cannot stop.
So yesterday, on the advice of Hope, my oncologist, I go to see the psychiatrist on staff at the Breast Care Center in the city to talk about these issues... and it's a total waste of my time. First of all, and I am not tooting my own horn here, I was more eloquent with my words than this woman (who was perfectly nice by the way). To get an opinion or thought out was painful for her and I often completed her own sentences. Secondly, she is really there to help the people clinically depressed from dealing with their diagnosis and treatment. She asked me if I was thinking of hurting myself and/or had ever been committed to the hospital for psychological issues. If she wasn't prescribing Prozac, then there really was no reason for me to be there, which is fine because I am not confused by why I am sad or worried or complaining. As you can tell, I am really in touch with my fears and concerns. And I don't lie around being depressed all day either. In fact, all I want to be is productive and do things like gardening and the dishes and replacing our dishes that have chips in them (which I did, online this morning on Crate and Barrel--they will be here Monday), and finding new pillows for our new sofa, and a new dining table with leaves and that extends because our house is so small we need all the room we can get (which I did, through Craigs List and Greg picked it up the other day, and it's really ugly...sigh), and organizing Sadie's dresser drawers by size and taking Frida on walks and paying the bills and doing the laundry and picking roses and putting them in vases and on and on. This is not the actions of a depressed woman, right?!
The only thing she did say was maybe I had 'survivor's guilt'. I guess this could be the case too. Every time I am at the breast cancer center, I am aware that there are people sitting right next to me whose tumors are not shrinking. Chemotherapy is not working on them and the doctors have no other tricks up their sleeves. After my first round of chemo, my tumor shrunk 2 cm and it kept on going until it was completely gone. The doctors were so impressed with me and themselves. So, really, I should stop complaining, I just beat breast cancer and there are others who are not. So maybe this new fear, this unknown, this pancreatic cancer fear, is just my way of not allowing myself to celebrate because I feel guilty about surviving. I don't know. I don't know anything. That's the problem.
Love,
Rosalie
3 comments:
I just wanted to write and say that you are so eloquent and brave and funny. I, too, have breast cancer and just finished chemo. I am having surgery (double mastectomy) in two weeks. I feel exactly as you do. Agh! Cancer is such a mental thing. Thanks for the great blog. I check yours to see what's gonna be happening to me since you are ahead of me by a couple weeks. I wish you the best.
I came over to you blog from petunia's, she is so very enjoyable to read and I have read many of her posts this morning and she shared one about you and how she wish she knew how to pray for you...
I was taught to pray in my youth and I will pray for you and your sweet little girl and your hubby...
Try to stay strong and have faith that things will work out.
Hi! I just read this and I want to tell you something to put you out of your misery. ok. A friend of ours who is in his late 70s recently - he and his wife (who insisted on this) went for one of those total body scans. She was clean. He had pancreatic cancer - a big tumor, that had been there at least 5 years. He had no symptoms at all, none, and never had felt better. he had chemo, they went in to maybe remove the pancreas or the tumor, but it had spread, they closed him up. his tumor shrank, responding to the chemo and radiation. they told him to go live his life and come back in 3 mos for a check up. let's say he never had the scan. he would probalby have 5 more years of asymptomatic time, then have symptoms, go in, be diagnosed too late. He may be getting this reprieve because the tumor was found earlier than usual, but still 4 or 5 years too late.
POINT: you know now that you are at risk. if the pancreatic tumor is found early, it is curable. the problem is it is never found early. SO......start getting those total body scans when you turn 45. 50, 55, = catch it early, remove it. live. you see? I hope I have helped you out of your misery. plus = things are changing in the field of pancreatic cancer. they are using gene therapy. what was for your mother and your aunt will not be for you. YOU, my dear, will have a total body scan, they will find your itty bitty tumor, they will cure it, you will survive it. NOW- go kiss your baby and tell her you will see her grow up and go kiss your husband. Quit worrying about this, OK? Promise me?
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