Tonight's picture was taken in November of 2008. Mattie was recovering from his limb salvaging surgeries and his pulmonology team wanted him using his lungs, so as to now get fluid in them from being confined to bed. Doing breathing exercises wasn't of any interest to Mattie, so we played all sorts of games in order to encourage him to take deep breaths. This included drinking juice using a funny straw. Naturally Mattie wasn't going to try it unless I did it first! This was a typical pattern and over the years, I learned to just play along!
Quote of the day: Imagine spreading everything you care about on a blanket and then tossing the whole thing up in the air. The process of divorce is about loading that blanket, throwing it up, watching it all spin, and worrying what stuff will break when it lands. ~ Amy Poehler
It was another red letter day on the Farm! After I got my dad showered, dressed, downstairs for breakfast and in his chair, I got in my car, because I had genetic testing at the hospital. Given that I have been classified as high risk for breast cancer, my breast specialist wanted me to meet with her genetic counselor. I have to tell you I wasn't interested in doing this to begin with, as it is a heavy burden walking around knowing you may have variants of genes that could result in cancer.
As I was backing out of my driveway, I could see that our cul de sac was filled with trucks! NOTHING new for me, as my neighbor has a never ending house renovation that has been going on for over a year. When I tell you that my other neighbors can't stand this person, I am NOT joking. The level of disrespect, debris, noise, and chaos this has produced in our lives is immeasurable. But today, I noticed white flags all over my front lawn and on the lawns of all my neighbors. I literally stopped my car, jumped out, and started screaming. I saw a Dominion Power guy walking around and I screamed at him to come over. I wanted to know if he was the one who planted the flags. Sure enough, he was. He introduced himself to me and I now have his business card. He is preparing all adjacent neighbors for what is about to happen.... new lines will be inserted in the yards of our houses in January. This will entail digging up the grass and power outages! You can imagine my reaction to this! This guy did not know what hit him. Turns out the power company will then plant sod and so forth but I wanted to know WHY this was happening. As I suspected it is happening because of my neighbor doing the extensive renovations. Since our community of houses isn't that old, all of our power lines are relatively new and he said this kind of service wouldn't be needed for another 15 years! But because of what is happening next door to me, this must happen now. Should be great to be without heat and electricity with two 89 year olds! Does anyone care? Of course not!
When I got to my appointment at the hospital, I met the genetic counselor. She was young, which I did not necessarily take issue with, but when talking about cancer, I do think that age and experience does help one understand the psychosocial ramifications of testing. Any case, she started by doing a family tree to determine which family members of mine had been diagnosed with any form of cancer, their age at diagnosis, and whether they survived. I told her about Mattie, but I did not tell her about Peter leaving me and the consequence that is having on my life. But truthfully it is part of my psychosocial picture and definitely impacts my health decisions. In fact, there were many questions she did not ask today, but would have been vital to understanding the full picture of me! Want to know the number one question she did not ask???? She did not assess for WHAT KIND OF SUPPORT SYSTEM DO I HAVE?
Understanding support is crucial because what if someone tests positive for a gene variant. Then what? It will take a great support system to help this patient navigate decisions, perhaps surgeries and recovery. But of course that is just logistics. There is a huge emotional impact to knowing one has a high risk of developing cancer, and frankly a thirty minute genetic counseling session is unethical in my opinion.
Any case, she then proceeded to give me a four page handout. The first page, listed all sorts of genes, that when mutated, can lead to breast, kidney, ovarian, uterine, colon and other cancers! She proceeded to tell me that ALL women have 12-13% chance of developing breast cancer, and that 5-15% of cancers are passed down from families. Then she started talking about three different blood tests I could take to determine whether I have certain variants in genes. As she kept talking, I felt like I was going to jump out of my skin. My life is in shambles and she is talking to me about the possibility of getting cancer (probabilities which by the way genetic testing can't determine.... testing is NOT that refined. So you can find out that you may have a variant and yet not know what probability you have to actually getting cancer! Perfect no?). I am sorry, tests are just that, they provide some data. But data can be wrong! Data can be of "uncertain significance" and data also has a major psychological toll on the patient. I told her that what she was discussing was emotionally ladened material and these meetings should come with a therapist in tow. She said that was what she was trained to do! Boy do I remember this argument when I was the chair of the DC licensure board, as genetic counselors wanted to qualify for our mental health license. NOPE, I wouldn't make that happen! Despite her "training," it isn't equivalent to mine. The fact that she wants to call herself a therapist, was irritating.
It is a hard decision to decide whether to do testing or not do testing. After all if you find out you have a variant in a gene, that puts you at even higher risk of potentially getting cancer..... what do you do? In my case, I am already aggressively screened yearly for breast cancer (MRI and mammogram), and colon cancer (with colonoscopies every three years). So then what? Well she says, I could elect to do radical surgeries like a mastectomy and hysterectomy. When she mentioned this I literally said to her.... you have to be kidding. I don't have a minute to myself, you think I am going to elect to undertake a major surgery now? How on earth would I recover given my heavy daily tasks?
This woman did not know what hit her today. I basically told her I have no appreciation for why anyone would come to see her. I don't view this as a preventative, but as a scare technique. In addition, I told her if one is diagnosed with cancer, you are most likely going to undergo such testing anyway to help direct treatment. So to me this is putting the cart before the horse. Yes I believe in aggressive screenings and monitoring, but I did not agree to any blood testing today. Do note that if you test positive for a variant, you will not qualify for disability insurance or long term care insurance! Which is why many people apply for these insurances before getting tested.
I left this meeting, upset, angry, and at the same time, fortunate that I have a brain and can make decisions for myself. But I guess what was also going through my mind is that my life looks different from many other women. I have no children and I lost my husband. Would I take a more aggressive screening stance if I had a family who relied on me? Probably YES! My feeling while hearing all of this from her today was..... so what? If I die tomorrow, so be it. It truly doesn't matter and one thing I don't need is more emotional stress wearing me down. She heard me and she said, that timing is key! That we agreed on, as perhaps in another phase of my life, I would be more open to this, but my gut feeling is still NO, I know enough about living with fear and cancer to know that I am not getting tested to live with daily questions.... will I get cancer, when will I get cancer, and have my life regulated by this uncertain information.
After the hospital visit, I drove to Mattie Miracle's post office. As soon as I walked in, I could see Darryll working in the back. Darryll is my post office angel, who has helped me for the last 15 years manage our holiday mailings. Darryll is hand cancelling hundreds of my letters this year, so they don't get ripped up in the machines. Truly he is a remarkable person and I told him he makes a difference to my life. I brought him a gift today to thank him for his years of service to the Foundation! He does everything with a smile and goes out of his way not just for me, but ALL of his customers. We need more Darryll's in the world!
I cut the big pumpkin into quarters and cooked one of the quarters tonight.
