Monday, April 28, 2014

Cancer's side-effect - Careers



 YES!!! I am making significantly less than I was making prior to my breast cancer diagnosis. During treatment I made about half of my regular salary. Now I'm back to about two-thirds of that salary. There are many reasons - company downsizing, chemo brain, energy level, and fear - I am afraid of getting back into the 9-5 work force; I don't know if I have the stamina or the mental sharpness to be competitive and productive. Lastly, although our finances are hurting, I'm not sure that I want to spend 40+ hours a week in an office. Unemployment is a fear, particularly with my age and my need to be continually insured (I'm covered now until Sept. 2015, what then?), and yet so is not being accessible to family - which is where my priorities are these days. I think I'll check on disability -

Breast Cancer's Costly Side-Effect: Long-Term Unemployment

Yan Ling Zhong, Jen Brodeur


Women who get chemotherapy for breast cancer may end up unemployed for a very long time, researchers reported on Monday.
A few may lose their jobs because they cannot work consistently — although it’s usually illegal to fire someone for being ill. But many may underestimate just how much chemotherapy can take out of you, doctors said.
Dr. Reshma Jagsi of the University of Michigan Health System and her colleagues studied 2,290 women in the Los Angeles and Detroit areas diagnosed with breast cancer between 2005 and 2007. They spoke with more than 1,500 of them four years later.
About 1,000 of the women were under 65 and interviewed both times, and of them, 76 percent had paid jobs before they were diagnosed.
The women who got chemo were less likely to still be working four years later, they reported in the journal Cancer. The researchers found that 38 percent of the women who got chemo were jobless four years later, versus 27 percent of the women who skipped chemo.
"Basically, I lost my business."
And some lost their jobs or stopped working soon after diagnosis. Two years after they were diagnosed, 30 percent of the women who got chemo were unemployed, compared to 14 percent of the women who did not.
The findings suggest that even though women want to get back to work as soon as they can, chemo may be changing their lives more than they think, Jagsi said.
“We also need to ensure that patients who are deciding on whether to receive chemotherapy understand the potential long-term consequences of receiving treatment, including possible implications for their employment and financial outcomes,” she said.
Most didn’t quit on purpose. Of the 127 women who had not worked since they were diagnosed, more than half said it was important for them to work, and 39 were actively looking for a job, the researchers wrote.
It happened to Kris Snow of Ann Arbor, Michigan. She was diagnosed with Stage III breast cancer in 2011, and her doctors recommended chemotherapy before she had surgery, to help shrink her tumor and make it easier to remove.

Image: Kris Snow with son Alex, 14 

Kris Snow with son Alex, 14, says she was too weak and
tired to work after receiving chemotherapy.

"You send an army in to weaken it and beat the crap out of it and then surgically take it out. So I said OK," Snow told NBC News
At first, it wasn't so bad.
"Other than being extremely fatigued I didn’t get that nauseous," Snow said. "When they started taxol, immediately I got numbness and tingling in (my) fingers and toes and hands," she added.
Snow, a former scientist, had reinvented herself as a home remodeler but couldn't set up contracts because of the side-effects.
"I couldn’t work. I was weak and tired," she said. "The tiles and boards I picked up were heavy ... I couldn’t even do painting because I was too tired." And clients were demanding the work be done immediately.
Now Snow, who is 53 and who has a 14-year-old son, is on disability. "Basically, I lost my business," she says.
"I couldn’t work. I was weak and tired."
The findings don’t surprise breast cancer experts. “For the vast majority of patients, side effects are manageable and they can improve after, but some patients don’t feel fully functional for the long term,” said Dr. Jennifer Litton, a breast oncologist at MD Anderson Cancer Center in Houston.
“So I think it’s really good that the study looked at employment as long as four years after diagnosis.”
Side-effects include “chemo brain” — a fogginess that’s been documented — and neuropathy, which is a numbness or pain in the arms, legs and feet that can affect a person’s ability to do some jobs, such as driving.
“I can think of a patient of mine, a nurse who had chemotherapy, she felt foggy, and she felt unsafe dispensing drugs to her patients, so we had to go back and forth talking to her and her employer,” Litton told NBC News.
“I sometimes have to advocate for long-term disability on behalf of my patients.”
People who are in poor health often have less money because their illness has affected their ability to work, says James Smith, chair of labor markets and demographic studies for the think tank RAND Corp.

Monday, April 21, 2014

First Responders

Today is the Boston Marathon. A year ago on April 15, tragedy hit the marathon, and I'm sure most of us know what that tragedy was and what the outcome has been. I don't want to linger on the negatives, but I do want to share this story. There are countless similar stories along with portraits of those survivors.

I want to honor those who survived and those who have made it possible for these folks to be alive and to move on with their lives. These "First Responders" are truly heroes. I see them as folks who are responsible (by choice) for saving lives.

I have had a group of first responders near me most of my life. They may only touch my life long enough to pull me out of crisis, to long-term - keeping me safe and helping me heal.

This group includes the following -

Eve - She taught me how to mother; how to make time to play with my children, how to come to my children's cries with "dry hands." She taught me how to dance in the rain, how to laugh. She taught me the importance of mammograms and self-exams, thus saving my life; neglecting this eventually took her life.

Anne and Renea - When the going gets tough, the tough creates - and these women saved me by nurturing my creativity. 

Karin ae - She gave me language to thoughts that had no words. She taught me how to write, how to validate my voice. She taught me how to live in my authenticity, how to think deep and be comfortable with that. She saved my life and my voice when I thought it was leaving me - by sharing her truth with me. She listened, she listens. She teaches me about moving forward.

Debby - She shared her world with me - teaching me the fine arts of quilting and life in the south, and she saved my life by catching me when I needed to run.

Shirlene - She taught me how to laugh with myself. She saved my life by laughing with me, and crying with me. She taught me how to be true. She gave me laughs in the darkest of times.

Marv - He took a chance with me, and we have been best friends ever since. His favorite word is "competent," and he trusts me, because I am competent. He taught me, "It is what it is." He teaches me that life is about progress - moving forward.

Cody - She pushes me. She saves me daily by teaching me to trust her, and I do. She teaches me, “Never be ashamed of a scar. It only means you are stronger than what tried to hurt you.”

David - He taught me I was "worth more." He taught me by sharing his knowledge of the business world and his male-based creative writing with me. He taught me about being resilient.

Cortney - He taught me about relationships. He keeps me young.

Nick - He taught me how to trust the camera. This lesson has been important as I learn to let go of fear, to not be afraid. 

Scott - He teaches me daily. He adores me. I am the most important thing/person in the world. Through him I am learning I can be loved, I am loveable. He saved me by saving himself; he has taught me about unconditional love. He is my first-responder and stick-with-it-forever responder.  He has taught me to have "more heart" and "Love is stronger than terror." He is a portrait of holding the ones he loves close. He has taught me I don't need to be strong alone, that we can be stronger together.

Jenna - She saved me by allowing me to rear my best friend - she is my gift. She was my first-responder with my cancer announcement. She kept me out of the cancer mode by sharing her daily life with me. When we were together, I was not a breast cancer patient; I was Mom.

John Banse, April 15, 2013, Boston Marathon Survivor said, "My soul is so full of gratitude that there is no room in me for sadness, anger, or fear." Because of the first responders in my life, I can say the same. 

Who are the First Responders in your life? 






Thursday, April 17, 2014

What a difference a year makes -

April 17, 2014, Hogle Zoo with Scott, Daniel and Autumn and family

April 17, 2013, Radiation oncology, last radiation treatment
 



Saturday, April 12, 2014

Be True -

One of the most profound bits of advice I've ever, ever, ever heard/read, from a website I absolutely adore:

http://www.humansofnewyork.com/post/78679045171/i-wish-id-partied-a-little-less-people-always

Go. There. Now. 

Wednesday, April 9, 2014

Nine Months' Post -



During my 4th week of chemo (2nd treatment) I went to dinner with 2 friends. I clearly remember telling them, "I hope I hurry and learn all I need to from this cancer journey, so I don't have to learn it again. I need to be as focused on this process as possible." And both of my friends saying, "I think your cancer and treatment will be something you'll continue to learn from, long after the treatments are finished." A light bulb went on in my head, and I knew they were speaking the truth. While my cancer treatment was the sprint, my cancer healing and learning is the marathon.

After reading Lynn Folkman's blog post this past week (http://livingbeyondbc.wordpress.com/2014/03/31/blog-back-healing-and-embracing-change-after-breast-cancer) and her comment about healing being an ongoing process, I realized I am not the only one who feels this way, what a relief! The only difference is that Lynn is 5 years out, and I'm 9 months. However, I certainly am not the same person as before my diagnosis.

Differences? Well, I do get tired more easily. I've learned to honor that feeling and act on it. In the past I pushed and pushed, knowing that I could push past my limits and succeed. Now I know that if I push I will fall, so I try to not run faster than I can walk. I am learning to go to bed early, to relish the times I can sleep in, and to not feel guilty about needing a nap or saying "no." Yesterday afternoon I had lunch on my front porch, leaned back to soak in the sun and fell asleep. Hurray!

I cannot multi-task anymore. On our trip to Hawaii in March I was rushing to check voice messages, get into the store, listen to my husband, and think about what I needed to purchase, all at once. We hurried through the store, walked into the parking lot, I looked into my purse for the car keys (to the rental car we had to have back to the airport a half hour later), and I couldn't find them. I immediately knew where they were - on the seat of the car - the locked car. We were able to get help and make it to the airport on time, but I can no longer do more than one thing at a time, particularly if I want to be effective at any of the things I'm attempting to do. This is an extreme example, but I see my lack of multi-tasking skills significantly diminished.

I am prone to anxiety. Too many questions, too much pressure to perform, and too much on my plate set me off. I get a headache, feel as if the walls are closing in on me, I feel confused, and I just want to run away from the stimuli around me. I am learning to stop, take a deep breath, and either focus on one item or walk away for a few moments, while I sort through things. This past year I've taken to keeping the radio off in the car and focusing on my surroundings. This has kept my anxiety at bay as well as allowed me to refocus. Practicing mindfulness and making time to meditate have been good tools to keep that anxiety at bay.

I forget. This is the biggest issue for me these days. Often I cannot remember what I did or said 4 hours or 24 hours ago. If I don't make a concerted effort to remember to remember, then I don't. This is basically my short-term memory. Often I forget what I'm going to say and then remember shortly after forgetting. If I don't quickly say what I was thinking, or do something physical (jot it down, use my fingers are a reminder) I'll forget again. I forget my purse walking from my house to the car, not noticing until I need it. I forget words - and cannot find them - not on the tip of my tongue or in the filing cabinet in my mind. I went to a workshop 2 weeks ago, came home, and 24 hours later could not remember anything about the day! Thank heaven I took notes!

Now these are the "bad" side-effects of cancer treatment. My doctor told me to consider my chemo brain and lack of energy to be similar to someone suffering from a traumatic brain injury and to treat this time and the healing process as such. So I do brain games (think Luminosity), I read a variety of material, I am sewing and crafting, I spend time writing, and most of all, I am learning to spend time "being" - to make time to do absolutely nothing. This tends to be the best time for me to heal.

The good news next post! 

This is my "Trust" and "Titanic" series - ha! 

 






Friday, April 4, 2014

Friday Luvin'

This tune has me moving this morning. A perfect way to begin the weekend.

I'm not happy with the way it uploads, so watch it here: "A Little Bit Of Love" by Mimi Knowles -