It’s good to have a plan…

If you are a patient with a chronic or life threatening disease, to the extent you can, you need to be actively engaged in your healthcare decisions. And that’s great, as long as you have the stamina and voice to speak for yourself. So what happens when you really can’t care for yourself? Or when all of the information and decisions become overwhelming for your primary caregiver? Earlier this year, I attended a one day conference in San Francisco. The topic: learning to be a better patient, to be your own health care advocate.  Adriana Boden, a former colleague and Julia Hallisy, a Bay Area Dentist, pulled together an amazing group of patients and professionals for a day of straight talk. The event has grown into the Empowered Patient Coalition, a non-profit group created by patient advocates devoted to helping the public improve the quality and the safety of their health care.

Joanna Smith, LCSW, MPH is a professional Healthcare Advocate and the founder of Healthcare Liaison, Inc.  She is just one of the many caring people I met at the conference. What exactly is a Healthcare Advocate? “Health advocates are professionals who specialize in helping individuals navigate the healthcare maze to ensure they get the help they need, when they need it, and in the most appropriate setting. This specialized profession has grown in recent years, reflecting its recognition as an effective resource for dealing with the growing complexity of our health care system, and its value to individuals and families of all ages. There is a broad spectrum of health care advocacy firms ranging from large national organizations providing concierge services and relying heavily on telephonic consultation – to smaller local or regional firms like Healthcare Liaison that emphasize in-person assistance. The key is working with an advocate with whom you feel comfortable.”

 

Cleaning out some files the other day, I rediscovered Joanna’s handouts and asked if I might reprint them for my readers. I am grateful for her permission to share:

When You Don’t Know What to Do: Ten Tips to Guide You with Your Healthcare

 

What happens when you receive healthcare information that overwhelms you? It can be about unexpected test results or the need for surgery. It might be for you, your partner, spouse, child or parent. Maybe you heard it while you were at the doctor’s office, at work or at home; you didn’t know what to d do next, and you weren’t sure how to approach it. You want to figure things out, but how?
In a crisis, everyone needs ways to “re-group”. Here are Ten Tips that can help:

1. Take a deep breath before you do anything – including going to the internet! There is a lot of information out there; make sure you go to reliable, impartial sources.
2. Don’t hesitate to ask questions. It is normal to only hear bits and pieces of stressful information. You need to keep gathering information until you are sure you’ve understood it all.
3. Bring a family member or friend with you to future medical appointments and have them take notes. What you miss hearing, they’ll remember for you.
4. Don’t try to “go it alone.” Decide who your support system is and use it! People with the most extensive support systems manage stressful situations the best.
5. Make sure you know the potential risks and benefits of any step you’re considering, and take all the time you need to understand them. Everything in healthcare has a possible “plus” and a possible “minus”.
6. Look at how you’ve managed uncertainty in your life before. Some people like to make lists of what their options are and then order it by preference. It’s a good technique to help you gain control over the situation.
7. If you’re overwhelmed by a decision to be made, break it down into smaller decisions. For example, the question of whether you want to try an experimental drug becomes “I’ll try it for “x” number of weeks and then decide if I want to continue.”
8. Get a second opinion. Insurance companies are generally willing to have you go for a second opinion before you make a major healthcare decision.
9. Realize that many insurance benefits have some negotiating room build into them. If you make a treatment decision and your insurer says it doesn’t cover it, ask to talk with a case manager at the insurance company about your specific situation.
10. Make sure you feel comfortable with your healthcare provider. If not, talk with friends, co-workers and other medical professionals about referrals.

Finally, stay open to new treatment options; in the future you could make a different decision. Medical systems are complex, and constantly changing. Give yourself time to explore the options before you make a decision, and know that you can change your mind.

 

(© 2009 Healthcare Liaison, Inc. All Rights Reserved)

The bottom line is we must each be responsible for our own health. We must ask the questions, do the research and become active partners in all decisions regarding our healthcare. And when we can’t speak for ourselves….It’s good to have a plan B!

Angels Among Us...continued

So…hospice is a little tricky, psychologically. Timing is everything! When you turn to hospice, you are admitting that the end of your physical life is somewhat imminent and that you do not want to take any extraordinary measures to extend it. You are going to die. Soon. And you are ok (more or less) with the next steps. Not a decision to be considered lightly!

Bill and I were clear with each other that we weren’t ready to give up hope. But, to “understand our options”, we filled our hospice prescription about a month later. As we suspected, we were a bit premature. But, it turns out, there is a step you can take that extends some, but not all of the benefits of hospice. It’s called Palliative Care – think hospice lite. Our experience was brief but positive. I would highly recommend that anyone facing a potentially life threatening illness investigate the services offered by palliative care practitioners in your community.

Our stay in palliative care lasted about a month…until our next clinic visit. By then it was clear that Bill’s ALS had a plan of its own and didn’t really care about our need to get comfortable with the stages of the disease. The palliative care nurse recommended that we contact hospice. It turned out to be the best decision of our lives.

Because it’s scary to admit that death is inevitable, and potentially close at hand, it’s hard to bring hospice into the picture. Typically, the hospice team is brought in during the last stages of the patient’s life, allowing them to die outside of the clinical environment of a hospital, affording comfort and dignity. We filled our prescription and received a perspective on what hospice COULD be.

If the hospice caregivers are brought into the family early on, they have a chance to get to know the patient, the family and gently walk everyone through the process. Not that their job is especially fun, but it isn’t meaningful for them if they are just around to help medicate a patient. They will do it, but optimally, there are lots of resources available which can make the journey much easier for the patient and for the primary caregivers. For example,

• Chaplains can address spiritual needs.
• Social workers can bring in community resources.
• Nurses and medical professionals can baseline vitals and have the difficult end of life discussions at a pace that seems comfortable and respectful.
  

And so it was with us. A care team was assigned to us. Jolene was the case nurse and a perfect fit for Bill. She respected him, listened to his wishes, was his advocate when I disagreed with a particular course of action and in general got to know him as a whole person. Not just a patient with symptoms to be managed. I loved her, because I could use her as an ally as needed! Jolene handled any major medical issues and made sure I was trained to handle the day to day issues. In the early days, a team of aides came twice a week to help with bathing and personal care. As we progressed, they came more often, giving me an hour of respite and Bill a clean shave and a smiling disposition. Showers will do that! Emmy was always his favorite. Hospice programs vary, so do your homework to find a good fit. I know of an ALS patient and his wife who received regular massages in their home as part of their hospice services!

I’m not certain why someone chooses to pursue a career in hospice. It may be that hospice chooses them. No matter! I am eternally grateful for these special angels among us. Thanks to them, the passage from this life is easier, and the resulting “good death” can indeed be celebrated.

Angels Among Us

When we are born, we come into the world amid much celebration and joy. When we die, why isn’t it the same?


Full disclosure at the beginning. Some of you may find the next few posts uncomfortable to read, because we don’t generally discuss death and dying in this culture. I hope you will stay with me as I share part of my personal story and thoughts on a model for a good death as I recognize the many angels who have chosen a career in hospice, during National Hospice month.


In my lifetime, pets, grandparents, friends, in-laws, my dad and my husband have died. For my dad and my brother in law, a gunshot wound and a motorcycle accident ended their lives almost instantly, mercifully. For those of us left behind, the process of processing their death was painful. We have all been very philosophical, saying “at least he didn’t suffer”.  But it still hurts some 20+ years later when I want to run something by my dad and have to grapple with the quantum physics/time-space continuum involved in that conversation. Needless to say, I’m snapped quickly back to the present moment! We have the conversation; I just have to listen a little more closely for the answer!


Since pets have chronologically shorter lifespan, we are generally prepared for them to die in our lifetime. I completely agree that the grieving process is intense, but philosophically, humans tend to be more prepared for a pet death. For my pets, I have been grateful for the caring counsel of a marvelous team of veterinarians!


For everyone else I’ve lost, hospice staff and volunteers have often been involved, at least to some degree. In the cases where hospice was involved, they were generally brought in at the last few days/weeks of life, primarily to help manage pain and offer some comfort to the survivors. And I will never be able to sufficiently express my gratitude for their marvelous work!


When we received Bill’s ALS diagnosis, we did a lot of soul searching. We suddenly found ourselves facing a lot of questions about death and dying. And….facing a question neither of us planned to discuss at only 23 years into our relationship. I’m not sure when we planned to have the conversation exactly, but I promise you, it wasn’t then! And from a now experienced vantage point, questions like “How do you feel about death?”, “What is quality of life for you?”, “Do you want to be buried or cremated or something else?”, “ What kind of funeral would you like to have?” need to be brought up sooner than later. Yikes!


As I write, I am so grateful for the counsel of Dr. Will North, one of the finest human beings I have ever met, and a darned good neurologist! During one of our early visits, with Will, Bill needed to know the particulars of what the last few hours and minutes of his life might be like. Not an especially surprising curiosity from a guy who had spent a most of his career in rescue situations and had seen his share of death. Me….I started to squirm and look for the exit route, knowing full well there is no escape, either from ALS or this particular conversation. Damn!


With his characteristic candor and amazing bedside manner, Dr. North walked us through what the final days and hours would likely bring for Bill. Turns out that the ONLY kind thing about ALS is that in most cases, it allows the patient a very peaceful passing and I can report that is what happened for us. Once Dr. North had satisfied all of Bill’s technical questions, he broached the subject of hospice and wrote out a prescription, with the understanding that we could “fill” it whenever we were ready. I remember our walk back to the car and ride home as exceptionally quiet as we each processed this new information.


I don’t remember who finally broke the silence but it was as if each of us was waiting for the other and finally couldn’t stand it anymore! We agreed that we were too early for hospice – Bill was still walking at this point – but we agreed that when the time came, we wanted hospice involved.


To be continued….

The Oyster and the Pearl

by: Janey Frazier

Saturday I will say goodbye to my left breast. It’s only been three weeks since my breast cancer diagnosis, yet the “before” time seems a world away. I’ve gone through the expected emotions – fear, grief, acceptance, more fear, more grief, and so on. But in some ways it has been a good time – I did not know I had such supportive friends and family members. They have rallied around me in every possible way. And my husband has confirmed that he is, in fact, the incredibly strong, courageous, loving man I married – we are tackling this challenge as a team.



I have always had a strong faith at the center of my life. I don’t attend Jewish, Muslim, Christian, Buddhist, etc. services, but I have an unshakable belief in a higher power. And I have always believed that the real me is not the body that perishes at the end of this life. I may not know how it works, but I believe that we continue on after this life has ended.


So that brings me back to my breast. It’s been a good breast and I will grieve its loss. But I do not fear the change to my body. My body is just the house I’m renting for this “season” of my life – I don’t own it and like even the best rental, the lease will eventually come to an end. I will take the best possible care of my body (I always have). I will face this challenge and I will survive this disease. But I will also remember that my body is just housing – no matter what happens to it, I will remain safe and strong within.


I am not my body.


I am not the oyster.


I am the pearl inside…

http://www.flickr.com/photos/wanhoff/ / CC BY-SA 2.0

Wow....what a ride!

The last 30 days have brought a whirlwind of change into my life....some good (my best friend got married, a new tech contract, new work mates, new routines), and some where it may take me a little time to find the good...but I know it's there!  In my younger days, I would have just powered through and found myself very run down and more vulnerable to infection.  I've heard it said that the definition of insanity is "to do the same things, in the same way, and expect different results!"

One of the biggest changes is that my friend Janey (you met her last month) received a breast cancer diagnosis.  I have to admit that those of us closest to her are pretty shaken.  She has asked to be a guest writer to this blog and share her story as it unfolds.  Of course I agreed and the first installment will publish tomorrow.  Please hold good thoughts and send good wishes her way as she prepares for surgery this Saturday.

November is National caregivers month, and no discussion of caregiving would be complete (in my opinion) without a brief chat on self care! In order to be available for others, you must "fill up" and make sure you have some reserves to share. For once, I have followed my own advice!!! In order to cope with all of this change, I've had to really pare down and take care of myself.  I'm not sure that I've done the best job, but I know that in the past 2 weeks, I've been much calmer about the changes in my life and feel more serene....so I guess that's good!

So...caregiving for me is to:

1. stop and admit that there is a whole lot going on
2. learn the fine art of saying no, or not now (at least until I've restored a little balance)
3. stick to the priorities and cut out all of the "nice to have" or "nice to do" tasks/events
4. get a massage!!
5. get to bed early, every night!
6. take my vitamins and extra emergen-C
7. read and reflect on the messages in the Daily OM
8. catalog my blessings in my gratitude journal, every night
9. just breathe!

How do you take care of yourself?  Please share your thoughts.

November is National Caregiver Month!

Welcome to November! This month we honor caregivers, and traditionally we think of caregivers as those who assist anyone with chronic or catastrophic illness. I’ve had that job! It is hard work, but can also bring great joy. To honor caregivers everywhere, the Heart of Hope bracelet benefiting Hospice and Care giving Programs debuts this month. It’s a beautiful combination of dusk sky and evergreen crystals. The prototype has received rave reviews!

This month, I’d like to expand the definition of care giving. As I did my research, I was amazed at how quickly my own horizons broadened. Here are just a few of the many caregivers in my life that I would like to publicly thank!


I LOVE my vet clinic!  Seriously!  For more than 20 years, Dr. Lenz, Dr. Bedros, Loretta and the rest of the staff have helped me through all of life’s ups and downs as I tried to be a good pet parent. Not only have they cared for my pets, but they have cared for me personally, by cheking in on me to make sure I was OK, and sending sympathy cards when I’ve lost one of my furry companions.


The majority of us find a hairdresser or barber and stick with them until they quit, retire or die. And I daresay most of us are very unhappy to have to look for a new one?! Month after month, they keep the threads of life straight for a myriad of customers. They celebrate all of the important moments in our lives and make sure we look our best. I am truly grateful to Alisa, who is responsible for my "red" and makes it very easy for me to put my best foot forward...on any occasion.


I am very fortunate to live in Northern California where the public transit is extensive, reasonably priced and very reliable. Every day, the WestCat bus drivers take the lives of thousands of riders into their hands and manage to dodge surly drivers, crazy motorcyclists and potholes the size of small lakes to deliver us safely to a designated spot, on time, making countless trips each day. Train operators herd thousands more into the equivalent of oversized tuna cans, And most of the time they manage to do it with a smile! I owe my sanity to these quiet and courageous road warriors!


Consider the barista who remembers that you take soy and honey in your morning chai latte, even if you don’t show up every single day – Thank you Laura, Belina and Jenn! In addition to my budding career as an artist/blogger, I work in technology, helping to build better software. I just finished a contract at Genentech and there is an amazing cafeteria on my campus – one that would make even the most serious foodies take notice! Steve and Dwayne and their team mates work hard to feed 500+ employees – around the clock. They have a wide variety of healthy alternatives (think...very proud moms!) to choose from, every day, catering to a very diverse customer base, culturally and in food preferences. And like good caregivers, they each listened – tailoring cafeteria style eating into a personal dining choice.  Extraordinary!


There are more…lots more! Pastors, nurses, childcare workers, grocery baggers, garbage collectors (where would we be without them!?). I think care giving can be re-framed as “giving care” and that can apply to so many people in your life. So…who takes care of you? Take a minute to post a thank you here!

5 October Insights

Hard to believe that Halloween is here and we're officially in the countdown to the holidays!  I LOVE this time of the year.  The air is crisp and so are the apples!  The landscapes are a riot of color and...we get an extra hour of sleep (clocks "fall back") tomorrow!  As Thanksgiving approaches, I'm grateful for some of the insights gained this month.  Here's what I know for sure...

• Breasts need regular tending!  As an owner, it is my responsibility to take the steps necessary to protect my health.  So I will continue to do my monthly self exams and schedule my annual birthday trek to the radiologist to be contorted into poses that would make a pretzel jealous!  All to keep me and "the girls" healthy.  I hope you will do the same!
• Self esteem can be fragile.  The words we hear, beginning at a very young age all come together to form our self image.  It doesn't take much to crush someone's self worth, but there are concrete steps we can each take to strengthen our self image.  In the meantine, it's worth remembering that words matter - especialy the ones we choose to describe or speak to, ourselves.  The sub-consicous mind cannot take a joke.  Choose your words carefully.  Choose to lift up, rather than tear down.
• Safety is personal.  Know the warning signs that you or someone you care about may be in a destructive relationship.  Be alive, awake, conscious and aware of your surroundings, friendships and what/who you listen to.  It just might save your life.
• Time is a gift.  In the fast paced world we live in, if feels difficult sometimes to slow down.  It's all perception!  Catastrophic illness diagnosis forces you to slow down and make the time to examine what is truly important.  I firmly believe that it's also a wake up call to each of us when a friend receives a diagnosis.  There are ways to help and encourage your friend and in the process, give yourself a gift that money cannot buy.
• Friendship is the most precious gift.  I consider myself quite fortunate to have many friends.  My richest blessings are truly my girlfriends!  I asked several friends to share their stories this month.  Janey, Katie and Lynda were honest and selfless.  Thank you!  I hope they have inspired and encouraged you to write your own story....maybe you'll share it here!!?  I took a few minutes today to re-read each post and am reminded of what I appreciate in each of these amazing women.  As I write this, I smile and offer a silent prayer for their continued good health and presence in my life, knowing that everything can change in an instant.

Thank you for reading and commenting.  I appreciate your kind words and encouragement!!  November is National Caregivers and Hospice/Palliative Care month, and 3 new Heart of Hope bracelets will make their debut.  So much to cover...so little time! 

Cool runnings - Peace be the journey!

Photo Credit:

http://www.flickr.com/photos/buffalopundit/ / CC BY-NC-ND 2.0

If we tell them...

Some people don't know

• how important it is that they exist...
• how great they are as a colleague...
• how good it is just to see them...
• how comforting their smile is...
• that their laughter is like a healing tonic...
• how much we have benefited from their encouragement...
• how good it feels just to be near them...
• that one hug from them makes us feel like we can do ANYTHING...
• how much poorer we would be without them...
• how much richer our lives are for their presence...
• that they are like Heaven's gift to us....

They would know if we told them...like I'm telling you!  Don't hold back.  Tell the people in your life how much they mean to you...today!

http://www.flickr.com/photos/mrpattersonsir/ / CC BY 2.0

Movie Corner - October

Like suicide, cancer (in general) and breast cancer (in particular) doesn't seem to be the stuff of Hollywood.  Although there are so many women who live/work under the bright lights of the entertainment industry, who have bravely shared their cancer stories. Sheryl Crowe and Melissa Etheridge jump quickly to mind.  I admire both women for not letting cancer define who they are as human beings or as artists.

I will say that there are more movies about the topic than I expected.  My GoodSearch search netted a couple of good leads.  The first is a blogpost by Michelle Kung:  Chemo Style on the Big Screen: Top 10 Picks for Cancer Movies.  Based on her descriptions, I have added "Pieces of April" (2003) and "Blow Dry" (2001) to my Netflix queue. Of the movies reviewed, Patch Adams, starring Robin Williams is one of my favorites.  Not mentioned, but a wonderful movie about cancer, friendship and carrying on is "Calendar Girls", proving once again that girlfriends and laughter are a great source of healing.   The second is a post by Jacki Donaldson, discussing "In the Land of Women", starring Meg Ryan.  I like Olympia Dukakis and Meg Ryan, so that's in the queue as well!

So....I'm thinking that popcorn may not be a great diet addition for chemo patients.  But since I have no personal knowledge, I'm willing to be open minded and would love to hear from you, the experts.  Can you, in fact enjoy popcorn if you are undergoing chemotherapy?  Let me know!

Suicide Prevention - a follow up

We are very fortunate in the San Francisco Bay Area to have KQED Radio a wonderful NPR station with a variety of programs covering topics as diverse as our culture.  I got a late start to the office yesterday and listened to FORUM, hosted by Michael Krasny, a program I normally miss.  The topic discussed was the recent cluster of four teen suicides in Palo Alto, CA. 

Dr. Philippe Rey, a psychiatrist and panel guest, discussed many of the issues facing teens today and gave concrete suggestions for parents and friends, sharing ways to engage adolescents and young adults, as well as how to have the "difficult" conversation.  My takeaway...seems better to ask "have you thought about suicide" and risk the rolled eyes/ire of your teen, than to avoid the question, assume all is well and live with the potential loss and associated guilt. While not an easy topic to discuss, I was struck by the sensitivity and candor of the panel members, guests and Mr. Krasny.  I heard a sense of urgency from Christine Dunn, the CalTrain representative, to identify safety issues and minimize opportunistic suicide, while balancing the financial/business needs of a public transportation agency.  I also sensed compassion from all of the panel members for the call-in guests who each had a brief story to share about someone they lost to suicide.  And, as always, I learned something new.

Like so many other NPR programs, FORUM is recorded and available for download as a podcast usually within 24-48 hours of the original program.  Check the FORUM program page.

Tue, Oct 27, 2009 -- 9:00 AM  Teen Suicide
"Caltrain is investigating the fourth teen suicide on the train tracks near Palo Alto in less than a year. We explore ways to identify an anxious or depressed adolescent, and discuss how parents and communities can respond."

Here are some additional resources courtesy of the FORUM page:

• Adolescent Counseling Services
• Family and Children Services
• Grief support and education
• American Association of Suicidology  Registration begins in December for the 43rd American Association of Suicidology Annual Conference "Families, Community Systems and Suicide".  Scheduled for April 21st - 24th, 2010 at the Hilton Walt Disney World in Orlando, FL.  Please see their conference page for additional details.

Action through Advocacy – Domestic and Family Violence

Last month I posted Action Through Advocacy.  Getting involved in the legislative process for a cause you care about is a positive way to channel emotional energy and make a difference. If you are a survivor, are currently battling breast cancer or would like to make your voice heard, join with others who are working to affect public policy.
This will sound like a broken record, but it bears repeating! Once you are an advocate, here’s what you can reasonably be expected to do:

• Educate yourself – become familiar with the strategy and current objectives of the advocacy program
• Educate others – know your story and share it as needed. Encourage those within your sphere of influence to join you.
• Respond – write or speak when requested and be alert to opportunities where you can educate and inform elected officials concerning domestic and family violence.

Next step….take a minute today to learn more about the Advocacy and Public Policy efforts of the following organizations:

National Coalition against Domestic Violence

Peace Over Violence

The Children’s Aid Society

American Academy of Family Physicians

or Google the following key words – Domestic violence, advocacy, public policy - to find the right opportunity to channel your energy. As always, please share your findings, so that we can all learn!

 

Photo by Marnie Webb 

http://www.flickr.com/photos/marniewebb/ / CC BY-NC-SA 2.0

LinkedIn to Breast Cancer Awareness Groups

LinkedIn is almost as popular as Facebook and an excellent professional networking tool. I found a number of LinkedIn communities who are working to raise breast cancer awareness.  Reminder: To access/join any of these groups, you must have a LinkedIn Profile and be logged in. To log in or create a profile, please visit the LinkedIn website.

The National Breast Cancer Foundation mission is to save lives by increasing awareness of breast cancer through education and by providing mammograms for those in need. NBCF accomplishes this mission through our initiatives, such as the National Mammography Program (NMP), Beyond the Shock educational video, MyNBCF online community, and the Early Detection Plan. NBCF programs provide women help for today and hope for tomorrow.

Pink Cures was started by an 11-year old girl, Tara, whose friend lost her mother to breast cancer, and Tara's mom. Together they make and sell breast cancer jewelry and gifts, and donate 100% of the proceeds to breast cancer research.

Triple Negative Breast Cancer's mission is to raise awareness of triple negative breast cancer and to support scientists and researchers in their effort to determine the definitive causes of triple negative breast cancer, so that effective detection, diagnosis, prevention and treatment can be pursued and achieved.

Feeling the Pink - Breast Cancer Awareness.  The group is about educating men and women about self breast examinations and healthy breast issues. The message that Early Detection Saves Lives needs to be promoted.  In 2005 Breakthrough Breast Cancer carried out a Boob survey where thousands of women were asked if they had checked their breasts within the past 28 days..82 % said that they had not and 47% alarming said they did not know how to undertake a self examination.This group will address those issues.

Back in the Swing is the first and only national nonprofit organization providing grassroots awareness, education and fundraising on behalf of the more than 2 and a half million breast cancer survivors in the United States to empower them to get back in the swing of life physically, emotionally and spiritually.

I (Diana Whaley Magers) started a group of Breast Cancer Awareness called Fight Like a Girl. I would like for you and your friends to join and maybe get an discussion going of your topic of interest on how to deal with and giving support to women that suffer with this disease. Thank you very much.

Please note:  The descriptions above were taken directly from the LinkedIn group page for each group.

Gift Giving – a New Perspective

Giving gifts is a time honored tradition in almost every culture.  We celebrate milestones like birthdays, weddings, anniversaries, graduation, bar/bat mitzvahs, Quincineras, engagements, new babies and more with gifts.  Winter holidays such as Kwanzaa, Hanukkah and Christmas are typically ALL about the gifts!  And Hallmark has worked hard to set aside specific days to honor our admins, grandparents, friends, mothers, fathers, valentines, sweethearts and more, all in an effort to get us into the gift 9and card!) giving mood.  I hope that you will keep the Heart of Hope bracelets on your list as your favorite "go to" gift for any occasion.  But today, I want to re-frame the custom of giving gifts...just a little!

As I get older, I realize how materially blessed my family, friends and I are.  We really don't "need" anything and I often joke that NEED is a very relative concept!  Instead, there will be times when we really need to give the gift of time to someone we love.  Time?!  You may have someone in your life who is battling with a catastrophic or potentially life threatening disease like breast cancer, or has escaped an abusive relationship.  It may even be you!  These events are not typical milestones to celebrate, but I believe we may want to reconsider the definition of "typical" and celebrate these precious moments!!

But how do you give a gift of time and make it special? How do you offer your services and have the intended recipient actually accept the help offered, in the spirit it was offered?  I was discussing this with some friends a while back and we all agreed that it's tough to accept help gracefully!  Together, we came up with a lovely solution - a way to turn an offer of time and/or service into something that the recipient can intellectually accept with grace.  when you think about it, if someone you cared about, took the time to wrap up a gift and give it to you, you wouldn't turn it down.  You just wouldn't!

Whatever the occasion, the Project Gift Box is perfect for someone who needs help and not "stuff".  You can go solo, or better yet, get together with several friends to create a customized gift. 

Step 1 - Create the Box

• Find a medium sized gift box with a lid.  Green tip:  Recycle an old gift box!
• Go all out and decorate it to your heart's desire!  Wrapping paper, ribbon, glitter, the works!  Add uplifting messages.
• Wrap the box and the lid separately.
• Find 4 - 5 different colors of paper and cut into 3" x 3" squares - Medium sized PostIt notes are the perfect size and don't require cutting!  The colors correspond to the amount of time which can be donated for any given offer (e.g. 15-30 min., 1-2 hours, 3+ hours, etc)
• Tape one slip of each color, with the time allotment, to the inside of the lid (as a reminder)

Step 2 - Add the Gifts

• Think about household projects/chores that can be shared/delegated. (See suggestions below).  There are chores that probably need/should be done by the recipient, but does it really matter who rakes the leaves or cleans the cat box?
• Estimate how much time the task will take and jot it onto the corresponding slip of paper.
• Drop each of the tasks into the decorated box.
• On a separate card, add the following message and include it with the box.  "Whenever someone asks you "What can I do to help you?", ask them how much time they have and then ask them to pull a colored slip from this gift box.  Then relax and appreciate this gift of time!"
• Deliver the gift box to your friend!
  

That's it!  What chores would you add to the Project Gift Box!

Cool Runnings - Peace be the journey.

Suggested Chores - you are limited by your own imagination!!!

• Change the bed linens
• Fold clean laundry
• Assemble a grocery shopping list (look in the cupboards and learn the specific brands your friend buys)
• Go grocery shopping
• Put away groceries
• Pull weeds
• Read to the patient or a restless toddler
• Help with homework
• Walk the dog(s)
• Clean the catbox, hamster cage, rabbit hutch, bird cage, goldfish bowl, etc.
• Empty the dishwasher
• Clean the toilet(s)
• Mow the lawn
• Take the car to the carwash
• Follow your friend to the dealership/repair shop for auto servicing.  Take them out for coffee while you wait.
• drop off a bank deposit
• Plant flowers/veggies
• Clean the pool
• Run the vacuum
• Rake leaves
• Clean the gutters
• Carpool kids to school, soccer, dance lessons, etc.
• Collect the trash/recycling and turn it in.
• Pick up/Drop off a prescription or dry cleaning order.
• Return library books, video rentals
• Shovel snow
• Hose off window screens
  

http://www.flickr.com/photos/thescott365/ / CC BY-NC 2.0

Develop and Share Your Story

I'm really on a kick regarding stories.  How to develop them and then looking for opportunities to share them.  One of my late husband's favorite movie lines was from Mad Max...and while I could not find the exact quote, it goes something like: "we tells these tales, so we can remember".

Yesterday's post to Defeat ALS was Developing your Story - Tips and Tricks.  It was specifically geared to developing a personal story around an ALS diagnosis.  The biggest take away from the post is this: Your ultimate goal is to educate people about the disease, share your experience, talk about what the specific organization that you support does to help people with the disease. Then ask for help to honor you/your family member/your friend by supporting the good work done by that organization.  I believe your focus on raising money to fund research/find a cure will ultimately help you speak with confidence.

I believe there are several versions of a personal story which need to be developed.

1. A personal history which is the War & Peace version of your story.
2. A basic narrative which is a synopsis of your circumstance.  It would include the type of disease or condition, details concerning your diagnosis, your initial reaction(s) to your diagnosis, what have you learned about yourself as a result of your diagnosis, how you have been assisted by family, friends, support organizations and advice to other patients in your situation.
3. Finally, you need an "elevator" pitch.  Which is your basic narrative condensed into 90 seconds.  This is often used as an introduction when you are asked to speak, are attending a support group or meet with legislators in the context of an advocacy event.  This is often the hardest to develop because you need to hit the "high notes" and pull the heart strings in one and a half minutes.
   

As I cruised the web for additional resources, I came across BreastCancerStories.org and want to share the link.  It's a beautiful site with honest, authentic stories.

"What truly makes BreastCancerStories.org different from a traditional blog site is that the stories are all searchable by location, age, type of breast cancer / treatment, marital status, ethnic background and more. It's very therapeutic to find others going through a similar situation, read their stories and even connect with them directly through the website."

So...what's your story!?

Share the Care - Offering Help

Some time ago, I wrote a post on my Defeat ALS blog entitled Ask for help / receive offers for help graciously. In it I wrote, "We are just not programmed to receive help. How often is it beat into our heads (from childhood!), “it is better to give than to receive”? Well, the truth is, somebody forgot to close the loop on this little axiom. If nobody receives, it makes it damn HARD to give!"

I attended a health care conference earlier this year and had a conversation with someone who helps organize friends/family members who want to help a loved one who is battling cancer. She agreed with my sentiment but shared a slightly different perspective. She said, I hear all the time "I would love to have some help! I want help, I know I need help, but with everything I'm trying to cope with, I can't always articulate what I need. The truth for me is that when you ask me "what can I do to help you?", the offer is so vague, my brain goes into overload and I just can't answer!" Hmmmmm. We finished our conversation and went our separate ways.

A bit later in the day, I walked into a card store and was immediately greeted with "May I help you?", and the "how can I help" conversation came rushing back...in a flood. I've had extensive sales training over the years, and the #1 taboo in sales is to greet a customer with "may I help you?" It's too overwhelming and immediately invites the customer to put up his/her defenses. (All together now..."no thanks, I'm just looking!") In that instant, I understood what my companion was trying to say about offers of help.

The same way I've taught my team members over the years to greet customers with ANYTHING but "that sentence" (I've actually levied fines to retrain my forgetful team members!!!), I thought it would be helpful to share some specific alternatives to "How can I help?". This is a "starter set" to consider. Just remember the goal....narrow down the options for the patient/caregiver - so that you are much more likely to get a positive, definitive answer and everyone wins!

   * I make a mean tuna cassarole and my family raves about my spaghetti. Which does your family prefer? (Obviously, insert your personal specialties!!!)
   * I am free to run the "kid shuttle" on Monday or Thursday. Which would be better for you?
   * I have an hour on Saturday to pull weeds or mow the lawn. Which chore would you like to delegate?
   *I can help you with household chores for about an hour - you know change beds, fold laundry, etc. How about Tuesday evening around 7 or Wednesday after 3?
   *I can take the kids Friday or Saturday night for a sleepover, which works best for you?

You get the idea! PLEASE add to this list by posting your suggestions!

Another alternative: Don't ask - just DO! Most of these suggestions require little or no planning and best of all, you can do them whenever YOU have the time, energy and inclination! Please keep your friend's temperament and your relationship in mind!! A word of caution...in the interest of fair disclosure: following any of these next suggestions is potentially risky! However, I am reasonably certain that even the most die-hard individualists would appreciate it if you were to:
--Wash a car left in the driveway.
--Shovel the driveway
--Safely, with a buddy, clear the gutters. or...
--Wash the outside windows. or...
--Take your kids, a couple of rakes and some big trash bags and just rake the leaves in your friend's yard. or...Trim the hedges. or....
--Mow the lawn. or...
--Deadhead/fertilize the roses. Other???


Your imagination is the only limit to building your Mitzvah list. Let me know how it goes!

Originally posted to Defeat ALS on May 21, 2009

http://www.flickr.com/photos/nicdalic/ / CC BY-NC-ND 2.0

Action through Advocacy for Breast Cancer

Last month I posted Action Through Advocacy.  Getting involved in the legislative process for a cause you care about is a positive way to channel emotional energy and make a difference. If you are a survivor, currently battling breast cancer or would like to make your voice heard, join with others who are working to affect public policy.
Remember, Once you are an advocate, here’s what you can reasonably be expected to do:

• Educate yourself – become familiar with the strategy and current objectives of the advocacy program
• Educate others – know your story and share it as needed. Encourage those within your sphere of influence to write their story and join you.
• Respond – write or speak when requested and be alert to opportunities where you can educate and inform elected officials concerning breast cancer or overall breast health.

Next step….take a minute today to learn more about the Advocacy and Public Policy efforts of the following organizations

National Breast Cancer Coalition 

American Cancer Society

Susan G. Komen for the Cure Advocacy Alliance

SHARE Self help for Women with Breast or Ovarian Cancer

or Google the following key words – breast cancer, advocacy, public policy - to find the right opportunity to channel your grief/anger. As always, please share your findings, so that we can all learn!

Breast Self Exam – Why and How it should be done

The truth is, the odds of getting breast cancer are certainly stacked in favor of the disease. Here are just a few of the statistics taken from the BreastCancer Facts and Figures 2007-2008, a report produced by the American Cancer Society, which should inspire you to do a breast self exam AT LEAST once a month. Honestly, just about any statistic on breast cancer that you could EVER want to know is contained in this very comprehensive report. Here are a few highlights.

• Each year, approximately 240,000 women and 2000 men will receive a breast cancer diagnosis. Yes…while rare, men do get breast cancer.
• Almost 75% of the time, a woman will hear that the cancer is invasive, to varying degrees, meaning that it has spread to surrounding tissue or other organs. The rest will be only somewhat relieved to hear the words in situ, meaning their cancer is all in one place, well contained, and has not spread.
• 17% of women will lose their battle and die while a whopping 25% of men will be lost to Breast Cancer. Only lung cancer accounts for more deaths in women.

So….now that I’ve sufficiently scared you into checking your breasts each month (I have, haven't I??!), what’s next?

Make a date with your breasts.

Seriously! Pick a date, any date of the month and circle it on the calendar. I do mine on the 10th of each month – which is my birth date and easy to remember. Some suggest the first or last day of the month, but the point is to pick a date and stick with it. Once a month should be fine if you are post menopausal, but if you are still menstruating, you will want to get and be familiar with your breasts during different times of your cycle.  Keep this date with yourself...do not blow it off.  Encourage the men in your life to do the same - especially if there is any breast cancer family history!

Know the mechanics.

I have a card that hangs in my shower to remind me of the actual mechanics of self exam. There are many options available [Google breast self exam, shower cards], but the least expensive one I found is sold by the American Institute for Preventative Medicine.  They offer a shower-ready card made of 100% recycled material with handy reminder punch-outs for $2 each (less if you buy in bulk). Both in-shower and out of shower steps are covered on the card.  I think these cards would make a great gift for every woman in your life which could easily be enclosed in a holiday, birthday or thank you card!!! HR Managers out there, you can also order them with company imprints.

Know what you’re looking for.

Now that you know HOW to check, what exactly are you looking for? eHow – How to do just about anything has an easy to read set of early warning signs that I use.

In general, early warning signs fall into a couple of big buckets, but any of the following, should prompt you to get an appointment with your doctor as soon as is practical. DON’T HESITATE. It’s much better to find out that a lump is nothing to worry about, than to ignore it, hoping it will go away, only to find out that you’ve got a big problem on your hands.

• Lumps are normal in breasts! Be wary if you find anything unusual in the upper, outer quadrant of your breast or directly behind the nipple. WebMD has a useful guide to help you.
• Skin Inflammation or change in texture – You’re looking for skin that is red/irritated, dimpled, puckered, scaly, or inflamed, particularly around the nipple.
• Skin swelling – pay attention if you notice a change in the size, shape or contour of either breast.
• Nipple discharge – clear or bloody discharge means get thee to the doctor pronto!

Last and certainly not least, beginning with your 40th birthday, sooner if there is a history of Breast Cancer in your family, schedule a regular mammogram. Mammograms are NOT fool proof and are not a substitute for regular self exam. I know several people who have discovered cancerous lumps that their mammogram missed!  That said, mammograms are useful and just one more tool to help keep you safe, and can alert your doctor to changes in your breast health!  I follow my own advice!!  My annual mammogram is a present I give myself each year on or near my birthday. I schedule the exam as early in the day as possible and then spend the rest of the day doing whatever I want! There’s always a period of gratitude for the progress we’ve made to create awareness and tools for early detection and swift interventions.

To your health!

http://www.flickr.com/photos/iheartlinen/ / CC BY-NC-ND 2.0

LinkedIn® Groups raising Domestic Violence and Breast Cancer awareness

As I write this, there are 78 groups on LinkedIn® where like-minded professionals can gather to support each other and make a difference in the fight against Domestic Violence, and 152 groups dedicated to Breast Cancer awareness.  I am especially impressed with the caliber of the discussion boards and links to resources within these groups. I've listed just a few examples, there are MANY others and I'm sure you can find one which might be just right for you!  Reminder: To access/join any of these groups, you must have a LinkedIn Profile. To log in or create a profile, please visit the LinkedIn website. 

Domestic Violence Awareness

• Domestic Violence and Homelessness The DVH group consists of web site owners taking action to help homelessness caused by domestic violence.
• Not Without My Pet is committed to promoting the safety and well-being of both human and animal victims of domestic violence.
• Silent Witness Initiative is an international organization that honors and remembers the women, men & children who are murdered each year in acts of domestic violence
• To access a full listing of DV related groups on LinkedIn, please click here.

Breast Cancer Awareness

• Susan G. Komen (For the Cure) is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures!
• The Winning Woman Network – everything with style! A Winning Woman has a good sense about herself. She knows what's important, what she wants out of life, and how she will get it. Most of all, there is a sense of peace within that gives her the confidence that regardless how many obstacles she may face, she is not alone and can share this journey with others - with a winning attitude, she is a Winner!
• breastcancer.org is dedicated to providing the most reliable, complete and up-to-date information about breast cancer. Our mission is to help women and their loved ones make sense of the complex medical and personal information about breast cancer so they can make the best decisions for their lives.
• "Some Days..." Book For The Cure Andy Koehn is on a mission to raise money to support and fund the breast cancer initiatives of the Susan G. Komen For The Cure foundation. He wrote a simple book in the wake of his wife's stage iv breast cancer diagnosis to help his children learn the simple but often difficult concept of "acceptance."
• Save the Eggs Our mission is to secure funds for women unable to cover the expense of saving their eggs when faced with the possibility of infertility due to chemo therapy--specifically in the treatment of Breast Cancer.
• Click here for a full listing of LinkedIn groups related to breast cancer awareness.

Buffing up a battered Self-Esteem

Someone asked me the other day "Are you always so positive?!"  I had to think about it for a second, but my answer was (and is!) "Yes....for the most part I am."  That got me thinking about resiliance.  You know...how to get back into the batter's box when life hurls the inevitable fast or curve ball, and it hits you.  Too bad we can't just throw down the bat and take a base!  Nope, we have to stay at the plate and keep swinging.  Baseball metaphors aside, I thought about the tools I use and of course, the universe provided the answer, as I was cleaning out an old file drawer.

I found this list a number of years ago and fell in love.  It's concise, easy to follow and reminds me to appreciate the very special gifts that only Kathie can bring to this game called life.  Each year as I review the year and set new goals, I take a look at this list and do a self assessment.  Whether you are struggling with a life threatening disease, trying to make your way back from an abusive situation or simply trying to figure out why you are here, I am confident that following these few exercises will help keep you at the plate and swinging away!

• Cultivate self-appreciation.  Write a list of your top seven qualities as these are what make you unique onto a 3 x 5 index card. Carry the card with you every day and read them several times a day (out loud is best!) to remind yourself of who you are and what makes you special. And you ARE....special.
• Write a list of past successes.  Think about the times in your life when you've been successful at something. Write a list of all of these and remind yourself of how you did this and how great it felt when you'd achieved your goals. Use these past experiences to fuel your self-belief and confidence for achieving your goals now.
• Don't engage in negative dialogue.  Don’t put yourself down in front of others as it succeeds to tell you and everyone else that you don’t value yourself and have a low self-confidence.  The sub-concious mind cannot take a joke, so negativity sinks in really deep.  Be careful who you hang around with and limit your exposure to negative media.
• Support yourself and put yourself first.  Be your own best friend. Don’t beat yourself up and call yourself names. Be encouraging and congratulate yourself when you complete actions moving towards your healthier lifestyle goal. This will help your self-worth soar.
• Choose positive role models.  By looking at others in a constructive way rather than negatively comparing, we can help ourselves. Look at others with a glowing self-confidence and notice their characteristics. Pick up words and body language that they use and add this to your own repertoire.  You are the company you keep.  Your friends are a reflection of what you believe your true nature to be.
• Accept Compliments.  Being able to accept, believe and feel good about accepting compliments is crucial to cultivating a high self-confidence. The best way to accept compliments is to look the person in the face, smile and say "thank you". And that's all!  This will in turn also make them feel good. Looking embarrassed, and feeling uncomfortable will also make them feel uncomfortable.
• Banish negative beliefs.  What are your negative beliefs and how have your negative beliefs held you back so far? Write them down.  Cross them out and make a pact to add nothing else to the list.  Then, for each negative belief write down one of the positive beliefs you developed in the first exercise.
• Adjust your body language.  Stand tall.  Head up, shoulders back, belly in...strong from the core.  Having good posture tells your mind, and others, that you’re looking good and feeling confident.  I love the line from Trading Places, the Dan Ackroyd/Eddie Murphy movie.  "Looking good Billy Ray!"  "Feeling good Billy Ray!"  Say it out loud.  Yes...you'll probably laugh, but you will also feel great!
• Use positive affirmations.  Using positive affirmations everyday is effective as you’re communicating with the negative thoughts stored in your sub-conscious. Pick three strong statements, which literally make a negative self-belief into a positive one. For example, if you believe you’re not a confident person then “I am a confident person” should be one of the positive affirmations that you say every day. Say your positive affirmations out loud while looking in the mirror and connect with yourself.  If you need help with this, there is a fabulous deck of cards written and produced by Louise Hay, one of my favorite authors.  Check the link below - it's worth the investment.
• Redefine your self-image.  You are who you THINK you are.  Think about and write up who you are now. Identify the bits you want to change and rewrite a definition of your self-image. Read this everyday for the next three weeks at least and be that person. Prepare for the changes you are going to make and the new you by throwing out your old clothes and thinking about how best to dress your new self. Then go shopping!

Batter up!  How do you work on, polish up your self image?  Please share your best tips/tricks.