Archives for posts with tag: Breast Cancer

One of the dear people in my life has Parkinson’s disease. She is an amazing woman. I met her as an undergraduate psychology major at the University of Washington. She was a grad student looking for research assistants. Her research sounded fascinating and I ended up working in her lab for 2-3 years. She was a wonderful mentor and took a faculty position in the Midwest upon graduation. I haven’t seen her in person since then but we stay in touch through Facebook and email. (She is legally deaf so the phone is not a good option.)

Her disease had an early onset. She noticed tremor in her hands while she was in the hospital just after delivering her daughter, who is now 12 years old. She was doing really well for the first few years. She went skydiving and traveled with her family. Eventually, though, she had to retire early from the faculty job she loved. She still drives and is ambulatory but I suspect this is true on an intermittent rather than daily basis. She has undergone two heart surgeries. She “flat lined” after the most recent one while in the hospital and it took the medical team some time to revive her. She remembers this time keenly and her unwavering focus on staying alive for her children. Her physicians have suggested brain surgery. She has not warmed to that option. She takes medications that cause all kinds of side effects. She knows that her health will continue to deteriorate as will her ability to take care of herself and stay connected with others. In other words, Parkinson’s is not a light-weight disease. It is chronic, it is progressive, and it ends lives.

Yesterday, I was following one of her Facebook discussions. (She is the most active Facebooker I know in terms of getting conversations and debates going.) At one point she was discussing Parkinson’s with a friend who also has it. They were talking about the hardships and then she ended one of her comments with, “At least it’s not cancer.” Although it surprised me a bit, I was not hurt in the least that she wrote this. But it is a great example of a sentiment I still hear a great deal from people, which is that cancer is the worst disease ever. It’s not a coincidence that a Pulitzer Prize winning history of cancer is cancer is called, The Emperor of all Maladies.

So the good news is that not everyone has been “pink washed” into thinking that there are kinds of cancer that are “the good cancer” or that cancer is cute or easy. The bad news is that the fear that people have of our “Emperor of all Maladies” will keep many of us, especially those with metastatic breast cancer, that much more isolated. Scorchy Barrington wrote about this isolation beautifully earlier in the week. Another blog buddy, Diane of Dglassme, wrote a beautiful comment on Scorchy’s post. I would copy it here but she might want to write a post about it in her own blog because it is that good.

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I have concerns about Angelina Jolie’s lifestyle and I still respect her healthcare decision.

I acknowledge the possibility that she made her announcement because she loves attention and I still respect her healthcare decision.

I have researched the problem of over-treatment of breast cancer and I still respect her healthcare decision.

I know that hospitals have money-making as well as helping people goals and I still respect her healthcare decision.

I disagree with the priorities and politics of the Komen Foundation and I still respect her healthcare decision.

I believe that the obsession with Angelina Jolie’s youth and beauty is detrimental to girls and I still respect her healthcare decision.

I am angry with Myriad Labs for patenting genes and I still respect her healthcare decision.

I could go on and on but I will end with this. I have been planning to write a post describing my decision to have a right-side rather than a bilateral mastectomy. I know the title of the post and I already have my research references lined up.

Why haven’t I written it?

I haven’t written it because I don’t want to invite feedback that is not respectful of my personal healthcare decision. And even more importantly, I do not want to unintentionally give any of the breast cancer people out there the message that I am questioning your personal healthcare decisions because mine were different than yours.

We are all people and all individuals. We can make different decisions and still respect each other. It doesn’t matter whether we are in the “pink crowd” or not.  Breast cancer prevention and treatment options are still gray. I made my treatment choices. Time will tell whether I made the right decisions but to me, they seemed the best decisions I could make based on the information that was available at the time. We are individuals, we have brains, and we have the right to make decisions that we believe are best for us.

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This post is inspired by Mogatos, the author of the excellent blog, Saying Nope to Breast Cancer.  She is in her early 30’s and had a prophylatic bilateral mastectomy due to her high genetic risk of breast cancer. Mogatos is a very courageous person who is helping lots of women. She has created a photo diary of her physical transformation since her mastectomy surgery in January. If you are interested in the two stage tissue expander/implant reconstruction process, I particularly recommend the site to you. Mogatos even painstakingly lists the costs of her medical care. Once I’m done with one of my medical bills, I don’t ever want to see it again.

I have had a request or two to see my reconstruction. I’m sorry to say that I am not evolved enough to share more than a photo of my belly button to the blogisphere. However, I have put together a visual showing my surgical process. Although breast cancer isn’t funny, using humor to cope with its threat is serious business.

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Okay, I exaggerate slightly. I am still having the occasional hot flash since starting acupuncture. However, I had a Lupron shot last week and usually the hot flashes get much worse right after the shot. This did not happen this time. Further, I am feeling cooler at other times of the day. Even before my breast cancer diagnosis, I was in peri-menopause. I often felt on the warm side. I feel a bit more like I used to before this hormone dropping part of my life.

I am cautiously optimistic. If the trend continues, I may never know for sure if it was a result of the acupuncture or some other reason/s. But that’s okay because a benefit of life as a tainted test tube is that I get to enjoy a positive outcome whether I understand the how’s or why’s behind it or not.

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A very heartfelt thank you to Diane of Dglassme’s Blog  for nominating me for a Very Inspiring Blog Award. It must have been that belly button scar photo I posted the other day that put me over the top! Seriously, I have followed Diane’s blog for quite some months now. She is brave, no nonsense woman with an interesting and honest perspective on her breast cancer treatment. Diane also writes joyously about what her relationships with her gorgeous Golden Retrievers add to her life.

I am writing about someone who inspires me and that is my friend, Shirley Enebrad and her son, Cory. I met Shirley through her husband Steve Geller, a fellow psychologist and friend, with whom I share an office. He is the one who is moving to Hawaii in about a month and has inspired a frenzy of furniture shopping to replace the stuff he is taking.

I’ve never met her son, Cory. He died about 20 years ago at age 9 of pediatric leukemia. Steve knew him (Cory was a child from Shirley’s first marriage) because he was working as a grief counselor conducting kids’ groups. Cory was in his group. This is also how Shirley and Steve met each other. Cory was an extraordinary boy with an extraordinary mom. Shirley wrote a quite moving book about her life with her son called, Over the Rainbow Bridge. It is an amazing and inspiring story. Cory’s life transformed the lives of those around him. I know that sounds dramatic, but it is true.

Here’s a quote from Elisabeth Kubler-Ross, M.D., the pioneering psychiatrist who wrote, On Death and Dying:

Cory was my favorite patient ever, and he taught me more than I could ever teach him. His lessons about the afterlife were profound, and his drawings of what he saw “over the Rainbow Bridge” helped thousands of people get in touch with their long-buried emotions.

I can only imagine the shattering trauma of losing a child. I know that Shirley’s heart still aches for her son, who if he had lived, would be near 30 now and perhaps have children of his own. Shirley became a tireless worker on behalf of children with cancer. Prior to her moving to Hawaii, she was the person who put together every one of the educational baskets that families of newly diagnosed cancer patients receive at Children’s Hospital in Seattle. That hospital serves a six state area. Shirley has organized fundraisers, written grief materials for children, and provided grief counseling to others. That’s just the tip of the ice berg of her service to families and children. On top of it all, Shirley and Steve have served as foster parents to a number of children over the years in addition to raising two children of their own, who are now both adults. In addition to being incredibly generous and skilled with very challenging children (with trauma histories of their own) for Shirley to take on foster children, who typically end up leaving your family, is incredibly courageous for one who has lost a child in the past.

Shirley has just published a new book, Six Word Lessons on Coping with Grief: 100 Lessons to Help You and Your Loved Ones Deal with Loss. It is downloaded onto my Kindle and I’m looking forward to reading it. She did not ask me to publicize her books on my blog. I love celebrating my friends’ accomplishments and sharing resources with people who might appreciate them.

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Lindbergh High School Reunion '82, '83, '84, '85

Join us this summer for our reunion in Renton, WA!

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

KomenWatch

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After 20 Years

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Dglassme's Blog

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making sense of the breast cancer experience together

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a male breast cancer blog

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a mother's and daughter's journey with transformation, cancer, death and love

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The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

FEC-THis

Life after a tango with death & its best friend cancer