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Tuesday, June 30, 2009

My Heroes: Where ARE All the Female Heroes?

I read this article Where Are All the Female Heroes and Superheroes? as I embarked on my month of blogging to the theme of heroes. I admit that this article inspired me to make sure I highlighted female heroes in my blog posts during the month of June 2009.

To recap, these female heroes included:
  1. Mrs. Chrisse Collins and her daughter Linda, co-founders of the Medic Alert Foundation.
  2. Jenni Prokopy of the ChronicBabe.com website, Kristin Thorson of the Fibromyalgia Network, Amy Tenderich of DiabetesMine.com and Lisa Copen of Invisible Illness Week.
  3. Dottie Thomas who, working along side her husband Dr. Don Thomas, co-discovered the secrets to successful bone marrow transplantation. Her name should have been on the Nobel Prize her husband won!
  4. Diabetologist Dr. Anne Peters.
  5. UCLA Livestrong Survivor Specialists, Dr. Jacqueline Casillas and Dr. Patricia Ganz.
  6. HealEmru.com webmaster and editor and bone marrow donation advocate Tamu Townsend, who is the sister of Emru.
  7. Karen Redding, LCSW, the group facilitator of the Thursday Night Support Group I attended from 1988 to 1990. She inspired me to become a social worker.
  8. Dina Rosen, LCSW, MD, MPA, my dear friend and HIV/AIDS physician and services administrator.
  9. My Grandma Ann Devine who taught me about unconditional love through her words and actions.
  10. My wonderful female friends who are heroes to me personally.
  11. My favorite TV female heroes: Wonder Woman, Dana Scully, M.D. from the X-Files, Melinda Gordon from Ghost Whisperer, Allison DuBois from Medium, Sarah Connor from Terminator, The Sarah Connor Chronicles, Claire Bennett from Heroes, Max from Dark Angel, Prudence, Piper, Pheobe and Paige Halliwell from Charmed, Mandy from the Grim Adventures of Billy & Mandy, The Bionic Woman, Charlie's Angels, Captain Kathryn Janeway from Voyager and Kara "Starbuck" Thrace for Battlestar Galatica.
  12. And the everyday hero, me!
But if you didn't get enough of female heroes, you're in luck because I have found some very cool links to other blogs and websites devoted to female heroes.
  1. Click here to visit the blog of The Hero Workshop and a month of posts on Women's History Heroes from March 2008.
  2. Click here to read an article about female Internet heroes from The Next Women-Business Magazine for Female Internet Heroes.
  3. Click here to preview the book Sheroes: Bold, Brash, and Absolutely Unabashed Superwomen from Susan B. Anthony to Xena by Varla Ventura.
  4. Click here to read The 10 Best Female Action Heroes, a feature story by Christopher Null.
If you want to be a female hero, consider donating blood, becoming a bone marrow donor and/or becoming an organ donor, because women outnumber men in these heroic endeavors.

As you can see, I have found female heroes and discovered that they can be found almost anywhere if you look closely.




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Monday, June 29, 2009

My Personal Heroes: My Friends

It would be a crime on my part if I didn't take the time to acknowledge all my friends, current and past, who have been there for me. My only concern writing this post is that, in my fibro fog and often fatigue impaired state, I am going to forget someone!

This post also combines my love of quotes, of
which there are many about friends and friendship.

Edna Buchanan said
, "Friends are the family we choose for ourselves." and Hugh Kingsmill explained "Friends are God's apology for relations." The friend who fits these quotes is my sister Cyndie who I "adopted" last Christmas. I need to thank her for reminding me that, as an adult, you get to choose your own family. Especially now that my parents are dead and my siblings are both far flung and once removed from me, it comforts me to know that I'm entitled to build a new family of my own choosing to fill the gaps my biological family leaves behind.

"True friends are the ones who never leave your heart, even if they leave your life for awhile. Even after years apart, you pick up with them right where you left off, and even if they die they're never dead in your heart.” (Anonymous) This quote describes the friendship I have with my friend Nina, who I have known since college freshman orientation. We see each other only from time to time, mostly because we live about 400 miles apart. Yet every time we get back together, we truly do pick right up were we left off, catching up on what has happened between visits and talking about our present concerns and situations.

“A real friend is one who walks in when the rest of the world walks out,”exclaims Walter Winchell. This beautifully described my friend Beth, who renewed our friendship once I began my life with chronic health problems. I appreciate her periodic phone calls, checking up on me and filling me in on her job and family. Which reminds me, I think it is my turn to give her a call...

“A true friend is someone who thinks that you are a good egg even though she knows that you are slightly cracked,” jokes Bernard Meltzer. My friend Colleen an
d I share a secret together: we both know each other is slightly cracked! I love friends who share with me their problems and let me, in turn, share about my problems. There are so many people in the world pretending that their lives are perfect. I think it is our faults and foibles that make us who we truly are and choose my friends accordingly. After all, I often feel like the queen of faults and foibles.

“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one!”expounds C.S. Lewis. I have met or bonded with too many of my friends through our mutual illness experiences, including April, Julie, Karen and Lauren. Some of the niceness, most talented, compassionate and giving people I know share my rotten luck in the health department.

“You can't stay in your corner of the Forest waiting for others to come to you. You have to go to them sometimes,” is a quote from A. A. Milne's Winnie the Pooh. This is my cue to make a list of the friends I need to contact, like Gordon and Eloise. I used to be better at keeping in touch before chronic illness sidelined me. The best part about having the friends that I do is that, even when I fall off the radar, they always welcome me back with open arms.

So thank you, my friends for being my family, being there for me when things go bad, sharing my burdens, accepting me in spite of my shortcomings and always being happy to see me. These are the qualities that make my friends my HEROES!




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Sunday, June 28, 2009

My Personal Heroes: I Am a Hero Too

I'm not a superhero with incredible strength or a super power. You won't find me running into a burning building to save a child or pet left behind. I can't combat the forces of nature or man.

But I can still be a hero...

Consider for a moment expanding the definition of what a hero is beyond dramatic acts requiring physical strength and extreme risk-taking. Let's suppo
se a hero can also be someone who demonstrates self-sacrifice to help others, takes a risk of any size or engaging in actions and activities to advance to common good. With this new, expanded, inclusive definition, even I can be a hero:
  1. I sacrificed to take care of my Dad with Alzheimer's after the death of my mother in 1999.
  2. I adopted 4 cats and 2 dogs from city animals shelters, the LA SPCA and a animal rescue group.
  3. I have donated my time in the past, and on a yearly basis, I donate money and goods to various charities.
  4. I've helped the environment by swapped out all the light bulbs in my house with compact fluorescent bulbs, reducing my outdoor water usage and make the effort to sure more of my trash winds up in the blue recycling bin. I also make the effort to take my electronic and medical waste to my local hazardous waste collection program.
  5. I recycling my glass bottles, aluminum cans and plastics and use a home water distiller to decrease my purchase of bottled water.
  6. When I was working from 1992 to 2004, I chose a career in social work so I could give back by helping those in need living in my community.
  7. I always express words of encouragement to people I meet who are newly diagnosed with the illnesses I live with and offer to spend time sharing what works for me with them.
If we chose to expand the definition of hero, we may find that we all can be heroes. I encourage you to contemplate the ways in which you are a hero to your family, friends, community and the world you live in.


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Saturday, June 27, 2009

My Personal Heroes: My Grandma Devine

My Grandma Ann Devine is my hero because she was the first person to teach me about unconditional love. My grandma and I got along very well, like two peas in a pod. She fostered my love of cooking and eating vegetables, real ones like cauliflower, Brussel sprouts, eggplant, artichokes, lima beans, fennel, asparagus, jicama and turnips. She always encouraged me, supported my interests and even once told me she saw a fortune teller that told her I would do great things. When she died in 1981 I was a devastated 16 year old.

There are two memories that I want to share with you that I think illustrate my relationship with my grandma. The first takes place when I am in grade school. I am unfortunately born in the month of August, which means that having a successful child's birthday party is not a likely proposition, what with most kids on vacation with their families or at summer camp. I insisted on having a party despite the unlikelihood that my guests would attend and somehow it was my grandma that became responsible for chaperoning my party. Predictably, only one guest arrived. Thankfully, my grandma made my party a success by spending the entire time keeping me and my guest engaged, entertained and happy. Her presence and participation turned my initial disappointment into a pleasant memory.

My second memory takes place in adolescence. As well as my grandma and I got along, my mother and I did not get along. Adolescence was a difficult time for me, filled with numerous fights with my mother. I started calling my mother a bitch in response to her venomous jabs at me. My grandma asked me about the strife between us and let me talk while she listened with interest. She offered some suggestions, things I could do to deal with the situation, Then she said, "Why do you call your mother a bitch? Why don't you call her a witch instead?" Her comment demonstrated to me that she empathized with my
plight, although she did wanted me to clean up my language.

I have many more memories like these that I think demonstrate how much my grandma loved me. What I don't have are any memories of my grandmother ever being angry or cross with me. Even when she didn't agree with how I was behaving, calling my mother a cuss word, she had a positive way of bringing it to my attention so I could hear what she said without feeling judged or punished. In the sixteen years we had together, I never had a reason to doubt my grandma's love.

There is a poem I want to share with you and I think is a good analogy for my life and how my relationship with my grandma fit into it:
God never promised
A life without pain,
Laughter without tears
Or sun without rain.
But He did promise
Strength for the day,
Comfort for the tears
And light for the way
And for all who believe
In His Heaven above
He rewards their faith
In His everlasting love.
~Author Unknown~
For me, my grandma's unconditional love was my sun, my laughter, my strength, my comfort and a bright light in my life. These are the reasons that she is my HERO.


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Friday, June 26, 2009

My Personal Heroes: The Original Little Mermaid

Is a fairy tale mermaid the stuff of heroines? The Little Mermaid by Hans Christian Anderson
was one of my two most favorite fairy tales to read growing up; Beauty and the Beast is the other favorite. The original story, which has a very different ending than the Disney "happy" version, was part of a fairy tale anthology book that was part of our library growing up.


I found myself contemplating this fairy tale as I was working out in my container vegetable garden today. At first, I thought that the original version, in which the mermaid do
esn't get her prince and jumps into the ocean and becomes sea foam, is too dark and tragic to be read by children. Then I paused and remembered I read it as a young child. Then I changed my mind and decided that this is the kind of fairy tale more children today should be reading. After all, this story embodies some important lessons for children and adults alike.

The tale begins with the mermaid saving a prince from a shipwre
ck and in the process she falls in love with him. She makes a bargain with the Sea Witch: in exchange for her tongue the mermaid gets legs and the ability to live on land and pursue her love. What she doesn't realize is that her tongue is what she needs to have a chance at winning the prince---I can't help but think if she had been able to speak, she could have told the prince it was she that saved him and maybe that would have made the difference. Sure, he and his bride come to love her as a friend, but the bargain with the Sea Witch stipulates that she must become his bride or she turns into sea foam the morning after his wedding. Her sisters, frantic to save her, trade their hair for a dagger. If she kills the prince before dawn the day after his wedding, she can return to them and the sea. But she does the right thing, and throws both herself and the knife over the side of the ship that they are traveling on.

I'm not a literary critic and I am not sure if there has been a literary review of this fairy tale. To me, this fairy tale teaches several lessons: first, that we don't always get what we want in life. It also is a cautionary tale, advising you to think about what you give up in order to pursue a dream. Throug
hout, the tale stresses that doing the right thing is important, even if doing the right thing is personally painful for you.

The little mermaid didn't obtain her dream and in the end maybe that wasn't such a bad thing. Hans Christian Anderson gives her the opportunity to gain a immortal soul instead, something mermaids do not have. Because of her good deeds and pure heart, she is transformed from sea foam into a "daughter of the air" with the chance to obtain an immortal soul in 300 years. Maybe that is why this fairy tale is one of my favorites: a reminder of the promise of heaven if you do good things and have a pure heart.

The lessons The Little Mermaid teaches is what make her
one of my personal heroines.


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Thursday, June 25, 2009

My Personal Herores: My Dogs

Stick with me on this post: the reason that my dogs are heroes is probably not what you expect. And for those of you who have known me as primarily a cat person, you might be surprised that I own a dog---two, actually, since January of this year. So let me share with you how I came to be a dog parent and lover and how my dogs have changed my life.

Prior to my trip-and-fall, my hubby and I were exploring our family building options through adoption. After my trip-and-fall in October 2004 and subsequent entry into life with chronic pain, those plans got put on the shelf. In 2007, I started grieving my multiple losses as the result of my life with chronic health problems. I also began to switch my focus from treating my chronic health problems to living my best life with fibromyalgia, chronic fatigue, dysautonomia and thoracic outlet syndrome. I still wanted to hold onto the hope that maybe, some way, I could once again proceed with our family building plans.

Not wanting to start the process without some confidence that I could do this, I decided that a good test case and interim step was adopting a dog. After all, dogs need more time and attention than cats and adopting a dog would help me gauge if I could handle the increased work and daily responsibilities of raising a child. I toyed with the idea for several months and finally decided to move forward with this plan in January 2008. With my youngest sister with me, I visited the West Los Angeles Animal Shelter on the Thursday afternoon just
to see what kind of dogs were available. I set my sights on a miniature poodle who was on a hold and available in a couple of days.

Robert expressed his concern when I shared my find with him when he got home from work. Skeptical about my ability to physically be able to care for a dog, he tried to convince me to reconsider. But my mind was made up and I was adamant. In an effort to change Robert's mind I suggested we go visit the dog I had in mind on Saturday afternoon. He reluctantly came along and when I showed him the dog I tentatively named Ralph, the dog didn't really appeal to Robert. Since he wasn't available for adoption until the following day, we moved on the visit some of the other dogs in the shelter.

That's when Robert saw this toy poodle and ask, "What about this dog?" Available to adopt that day, we asked an attendant if we could interact with this dog in the visiting area. Poor little poodle appeared a little dazed; he had been given up by his owners and moved from the South L.A. to West L.A. shelter that day. "I like this dog," Robert said. With that statement I knew Robert changed his mind and was on board with my plan. To seal the deal, I let Robert name our new dog and he picked the name Brunswick after his love of bowling and the fact that, at 15 pounds, he weighed as much as a bowling ball.

A year later, when we took Brunswick to Urban Dog doggie day care, he met a puppy named Theodor. Brunswick doesn't get along with a lot of other dogs, but he seems to take a liking to Theodor. Robert thought he was cute, so we took him home for a trial sleep over and in 24 hours decided to let Brunswick have a dog of his own.

I won't lie: it has been a huge adjustment for me taking care of my dogs. My chronic illness can be very unforgiving and adding any new activity, especially one done day after day, often has a huge negative impact on me. Despite some added pain and fatigue, I have come to enjoy owning a dog and overall, my dogs have changed my life for the better. Here is how:

  1. They get me out of the house every day, several times a day, and into the sunshine and fresh air, even when I am having a bad day. Sometimes we even go to the park and the dog park.
  2. They attract the attention of neighbors and strangers, which in turn increases my contact with my neighbors and other people in the neighborhood.
  3. Since I want them to be well-behaved, I take them to training at Petsmart where I meet new people and they meet other dogs. Training gives me a new skill to learn and practice with my dogs at home.
  4. They help me establish a daily routine because they need to be fed, pottied and walked on a schedule. My life used to revolve around my work; now my life revolves around my dogs, which I don't mind at all.
  5. Brunswick especially has ignited my interest in a mutual goal for both of us: for me to train him to be a therapy dog. That way, I get to volunteer and help other people with Brunswick at my side!
  6. I don't feel so lonely spending most of my days alone at home with my dogs to keep me company.
  7. Brunswick and Theodor give Robert and me something to share and bond over.
I still don't know if we will be able to build a human family of our own through adoption. In the meantime, being a doggie parent has helped quell some of those longings for me. I enjoy all the positive energy my dogs bring to my life and for that they are my furry HEROES.



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Wednesday, June 24, 2009

My Personal Heroes: Dina Rosen, LCSW, MD, MPA

How often in life does someone you admire and look up to as a role model wind up being your friend? I almost have to pinch myself every time I think about Dina Rosen. Dina started out as my social work icon, became my mentor and then my friend and maid-of-honor! She is very special to me indeed.

It started when I was a graduate student at the UCLA School of Social Work from 1990 to 1993. I decided that I wanted to work with persons living with HIV and
AIDS so I could share myself and what I had learned as a cancer survivor with people facing a different sort of life-threatening illness. I also decided that I wanted to complete a Master's Thesis in 1991 and the subject would be on women living with HIV. This decision brought me to the AIDS Service Center (ASC) in Pasadena and the Director of Client Services, Dina Rosen, LCSW. Next to AIDS Project Los Angeles (APLA), ASC was the second largest AIDS organization in Los Angeles County. And unlike APLA, ASC and Dina were willing to help me connect with women living with HIV/AIDS and ask them to complete the questionnaire that was the basis of my thesis project.

I admir
ed Dina from the moment we met. She was warm and friendly; she exuding commitment to the cause of HIV and AIDS like it was a perfume that she wore. She spent some time talking to me about my thesis project and explaining the services of ASC, and in her words and her facial expressions I could both hear and see her dedication to her mission. We were interrupted several times by her co-workers; I could tell they respected her too and looked to her for guidance. I left our meeting wanting to be a social worker just like her.

As fate would have it, we
met again in 1995. Newly employed at the Santa Monica AIDS Project as the Client Services Coordinator, my boss and I were interviewing for a Clinical Consultant to guide and mentor me. At that time, Dina had left ASC and was working as a consultant. My boss knew Dina, as he had worked at ASC with her, and I jumped at the opportunity to consider her for the position. It wasn't really fair to the other applicants that came to interview because I already had my heart set on making sure my boss offered the job to Dina. She accepted and I was elated!

Over the next three years Dina became my teacher. She challe
nged me and made me think. She let me make plenty of mistakes so I could learn from them along the way. She taught me what she knew about case management, social work and supervising other people and I listened and learned eagerly. She also provided me with much needed clinical supervision hours and helped me achieve my goal of becoming a licensed clinical social worker. I will always be indebted to her for this help. Her generous teaching helped me pass the written and oral exams on my first try. (To put this in perspective, given the overall pass rate back then was only 50%, this is a huge accomplishment.)

Through this experience she also became my friend, much to my delight. We started talking to each other by phone and meeting up with each other to go out. When I considered who to choose for my attendants at my 1998 wedding, Dina became my choice for maid-of-honor. She graciously accepted when I asked her.

In 2000, Dina decided to pursue her dream of becoming a doctor and in the process has transformed herself into a world traveler. She attended medical sch
ool at St. Georges University in West Indies and her medical training has taken her to London, the Czech Republic, Cuba, the East Coast, the East San Francisco Bay area and Los Angeles. During this time, I have seen Dina a few times a year, whenever she has been in Los Angeles. I've reveled in the opportunity to share a meal and get caught up on all her adventures. Earlier this year she accepted a job working for the AIDS Healthcare Foundation in Durban, South Africa. She won't be back in Los Angeles for a while, so we'll have to try to keep in touch by email and Facebook.

In recent years, I've often imagine myself doing the same things that Dina is doing. In my parallel life, I would have gone to medical school instead of being diagnose with cancer at age 22 and stayed single instead of getting married. I would have joined the Peace Corps and worked for the World Health Organization. I'd be a world traveler too.
I'd be expressing the same dedication to fighting HIV/AIDS that she does:
"Why HIV Medicine? It is my calling. I worked in HIV/AIDS as a social worker and administrator for 12 years before going to medical school. I loved the clients and feel a great sense of purpose in helping those infected and affected by HIV/AIDS throughout the world."
So I guess I have come full circle: icon, mentor, friend, icon. In many ways, my relationship with Dina is like following a guru or a rock star: I want to be like her, I want to be close to her, I hang on her every word and I can never get enough of her. She is my HERO for inspiring me, teaching me, helping me and being my friend. I can't imagine my life without her being a part of it.




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Tuesday, June 23, 2009

My Personal Heroes: My Young Adult Cancer Support Group

We were the "Thursday Night Support Group" at Vital Options: Support for Young Adults with Cancer in North Hollywood, CA. We committed to coming for 12 weeks per session, every Thursday night from 7 to 9 PM and our group leader was Karen Redding, LCSW. I joined the group after I completed my cancer treatments in the Fall of 1988.

We sat together in a room and talked ab
out how our lives changed when we were diagnosed with cancer. We shared about the tortures of cancer treatment, the uncertainty of remission, the heartbreak of recurrence and the fear of our own mortality. We ranted about how stupid cancer had interfered with our lives and plans and relationships. We talked, listened, cried, shared, laughed and supported each other during our time in group together.

It is amazing to me how we came together as a ragtag family and how the dual experiences of cancer and the support group forged a strong bond between us. On the surface, we came from different backgrounds and upbringings and I of
ten think that we would never have even met each other under normal circumstances. As much as it took away from us, it was the cancer that brought us together, opened us up, brought out our caring and connecting selves and helped us see the similarities among us.

The members of the group called Karen, our leader, facilitator and guide, a "soft steamroller." She didn't let us just blurt things out without taking the time to explore them. This was not always an easy or enjoyable process, but Karen knew it was necessary for us to feel our feelings, talk about our darkest fears and work through our issues until we could see a resolution. We each had our turn facing the "soft steamroller," yet seeing my fellow group members make it through the group process to find their own personal truth and answers gave me the courage to let go and go with the flow when it was my turn.

Through participation in the group, we all figured out how to live our lives, again, now that we were cance
r patients and cancer survivors. For me personally, the group helped me find the courage to get back up, dust myself off and start my life again. Among other things, I was nervous about going back to UCLA to complete my Bachelor's degree; all my friends had graduated without me and I faced senior classes with co-eds who all knew each other but didn't know me. With the group supporting me, I didn't feel so out-of-touch and out-of-place when I returned to campus because they were there for me, during group and outside of group, if I needed someone to talk to, was struggling with fitting in, felt lonely or overwhelmed.

It's been almost 20 years since the group disbanded and yet I can still remember my ragtag family: Wayne, Benita, Katie, Jade, Gail, Julie, Cameron and me. Some of us are no longer here: Jade died of metastatic breast cancer, Gail died from lung cancer and Julie died from metastatic colon cancer. The last time I saw Katie and Cameron was at my 1998 wedding in Marina del Rey; Benita and Wayne wer
e invited too but could not make it.

As the years have passed, we all have moved on and away from each other.
Though we no longer are together, the memory of the bond that was established, nurtured and grew between us in group still exists deep inside me to this day. I will always be a member of the "Thursday Night Support Group" and they will always be my family, where ever they are. Their love and support while I put my life back together after beating cancer is what makes my fellow "Thursday Night Support Group" members heroes to me.




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Monday, June 22, 2009

My Personal Heroes: My Husband Robert

I can't start a week talking about my personal heroes without telling you about my husband Robert. Robert and I have known each other for 25 years now (wow!) and have been married for 11 years (double wow!). We met my second year of college, 1984-5, at UCLA and immediately became friends. In fact, being friends is the key to why we started dating, got married, are still together today. Being my friend and loving me---that's why Robert is my hero.

After my cancer experience in 1988, I convinced myself that men would never find me attractive and I would never have a boyfriend again. My evidence for this belief: 1) my boyfriend at that time dumped me a month after my cancer diagnosis and 2) I felt like some kind of weird science experiment---hairless from chemotherapy and wearing a wig, yellow and fatigued from Hepatitis C and in premature menopause.

But my friend Robert was still around and I enjoye
d spending time with him. He even accompanied me on a trip to San Diego to visit a graduate social work program and I decided to have some fun and rented a red convertible Mustang for the trip. It was shortly after that trip that Robert did the unexpected: he confessed his love for me and told me he wanted to start dating. Taken aback, I said, "No, I just want to be friends!" His admission and my refusal lead to some awkward times between us that we resolved by parting ways for a while in late 1990.

By 1995, I'd proven my theory about men and dating wrong; I'd gone out on many dates and I'd even had a boyfriend or two. During the Summer of 199
5, when I was coming up on my 30th birthday, I found myself in a funk and experiencing a full-blown early mid-life crisis. One day, I opened my address book and decided to write "thanks for all the memories" and "I'm moving on without you" notes to friends I had not seen or spoken to for several years. One of the recipients of these notes was Robert, who called me two days after I sent the note to him and said, "Just because I haven't talked to you in a while doesn't mean I don't want to still be your friend."

After that, we started hanging out together again. Having him back in my life, I realized how much I missed him and what a really great guy he was. I started having second thoughts about turning him down, so I exercised my female prerogative and informed him that I had changed my mind while on a day trip to Sant
a Barbara with him. I got lucky because he still felt the same way about me too, and the rest is history.

Truth be told, back in 1990 I wasn't ready for him to love me just yet. I also couldn't see that he was the perfect partner for me, simply because he truly loved me and all my health problems didn't matter. He proved me wrong in such a wonderful way and he is my hero for it!


We live a good life together and we are still each others best friend. We have the kind of love and marriage that is for better or worse. Sure we have a lot of fun together, but in the past 11 years we have also had more than our fair share of trials and tribulations, bumps in the road and unexpected twists and turns. No matter what, I can count on Robert to be there for me and he can count on me to be there for him.

Maybe that makes me Robert's hero, too!


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Sunday, June 21, 2009

My Personal Hero: My Dad, Gerald E. Keerbs

Today is Father's Day and I am missing my Dad, Gerald E. Keerbs or Jerry as his friends and family knew him. He died in 2004 from complications of Alzheimer's disease, but this horrible disease took the essence of him long before, starting around 1996. It took me this last five years to really recover my memories of who he was and let go of the memories of the person Alzheimer's disease distorted and twisted him into.

But living with Alzheimer's disease is not what make my Dad a hero to me. My Dad is my hero because of the unconditional love, infinite caring and unending self-sacrifice he showed during my time battling acute promyeloytic leukemia in 1988 at age 22. After I was diagnosed on January 13, 1988 at UCLA Bowyer Multidisciplinary Oncology Clinic, my Dad faced my tragedy and rose to the occasion. He was truly there for me.

During 1988, my Dad became my go-to-guy and primary caregi
ver: he took me to all my medical appointments, he checked me into the hospital for each course of chemotherapy, he drove me to the Emergency Room counteless times when complications emerged between hospital stays, he insisted he be tested to see if he was a bone marrow match for me and he donated his platelets when I started to have transfusion reactions towards the end of my chemotherapy. He organized a trip to my apartment during my first hospitalization and, with the help of my Mother and youngest sister, moved me out and back into my parent's home. Every single week night, he drove from a long day at work at The Aerospace Corporation in El Segundo to home in Encino and then to Westwood to the UCLA Medical Center to visit me in the hospital. I spent about 20 weeks that year in the hospital, which means my Dad made this trek a total of 100 days.

When I was in the hospital, I lived anywhere from 3 to 6 weeks in my hospital room. So when I say that my Dad checked me into the hospital, what I mean is that my Dad lugged 2 or 3 boxes full of my stuff from the parking lot to my hospital room. Similar to moving into a dorm room at college, I brought a variety of
clothes, diversions and extras that made my hospital stays more comfortable and tolerable. Included were board games and my Koosh Ball, which were often pulled out when my Dad came to visit to create an enjoyable way to pass the visiting time.

When I wanted something particular to eat from home or the store, he got it or bought it and brought it too me. If I needed a book, an article of clothing or anything else from my room back at my parent's house, he searched for it and delivered it to me. He took my dirty laundry home with him, washed it and brought back clean clothes. He encouraged my youngest sister to come with him on visits: the two of them were a dynamic visiting duo!

To this day, I don't know how he was able to get all the time off work he did. Even though, at first, I didn't want to accept all his help, I am so grateful that he was insistent and persistent with me. It felt good t
o know that I could count on him for whatever I needed when I was fighting cancer. He truly took care of me which is what makes him my hero.

So when my Dad was diagnosed with Alzheimer's disease in 1996, I knew I had my chance to repay him. I used my knowledge as a social worker and provided my Mother with information, resources and support to meet my Dad's needs. When my Mother died in 1999 from metastatic colon cancer, I rose to the challenge and became my Dad's primary care giver. With help from my youngest sister, I did everything I could to make sure my Dad was well taken care of: good medical care, comfortable and compassionate assisted living housing, engaging adult day care and lots of visits from me, my youngest sister and my husband.

It hurt to watch my Dad slowly fading away; Alzheimer's is a cruel and vicious illness. The hardest part was when my Dad couldn't remember who I was any more. They say Alzheimer's is the long goodbye, b
ut I think it is a long illness of forgetting into nothingness. But I never forgot who he was, what he meant to me and how he sacrificed for me when I was ill. Those memories helped me be there for my Dad during his illness.

I am glad that today I can really remember my Dad for the hero that he was to me. I love you Dad and always will!

Now, you can be my hero by going to the tribute page I created for my Dad at the Alzheimer's Association website. Please considering making a charitable donation through the The Gerald E. Keerbs Memorial Fund (http://act.alz.org/goto/Gerald_E_Keerbs) to the Alzheimer's Association.





This is my Father's Day gift to yo
u, Dad!



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My Heroes: HealEmru.com, Bone Marrow Donor Advocates

The health care heroes continue on for one more day. It seems my tweets on Twitter about my blog posts have attracted some attention! I want to let you know about the website HealEmru. Glenn Grant, the artist who created the flyer featured at the end my post, My Heroes: Bone Marrow Donors, is part of the HealEmru website. He read my tweet about my bone marrow donors blog post, contacted me on Twitter and sent me this message: Imagine my surprise when I read your empassioned blog post and seeing a poster I designed at the end. Thank you so much. <3

Emru Townsend was a bone marrow transplant recipient and fellow leukemia patient like me. Unfortunately, after an 11 month fight, he died peacefully on November 11, 2008. Before his death, he focused on getting the word out about the need for bone marrow donors of color: person of African, Asian, Pacific Islander, Indian, Native American/First Nations and mixed heritage. His friends and family continue the website in his memory and work to get the word out about registering to become a bone marrow donor.

Please check out the website, www.healemru.com, for more information. This website is also on Twitter as @healemru.


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Saturday, June 20, 2009

My Heroes: Health Care Heroes *Honorable Mentions*

It's been a great two weeks of sharing with you my health care heroes. Since I only have one more full week of June to write about heroes, I'm afraid it is time to move on and highlight some of my heroes in other fields. But before I go, I want to share with you some of my health care heroes "honorable mentions."

In the category of Health Care Websites and Health Care Advocate Heroes:


DiabetesMine by Amy Tenderich





Invisible Illness Week, Rest Ministries and the Chronic Illness and Pain Support blog by Lisa
Copen



And in the category of Health Care Discoveries and Pioneering Heroes:

The Discovery of the Hepatitis C Virus


Drs. Michael Houghton, Qui-Lim Choo, and George Kuo at the Chiron Corporation and Dr. D.W. Br
adley at the Center for Disease Control worked together to identified the Hepatitis C virus for the first time in 1987. Dr. Harvey J. Alter, Chief of the Infectious Disease Section in the Department of Transfusion Medicine at the National Institutes of Health confirmed the discovery in 1988. Dr. Alter and Dr. Houghton went on to develop the Hepatitis C antibody test, which today has reduced the risk of becoming infected with Hepatitis C from a blood transfusion to virtually zero. Dr. Alter and Dr. Houghton were honored for their work in 2000 with the Lasker Award for Clinical Medical Research.

The Invention of the Blood Glucose Meter

Many diabetics test their blood sugar multiple times per day. What many diabetics don't know is t
hat Anton H. (Tom) Clemens developed the first blood glucose meter, known as the Ames Reflectance Meter, in 1969. Furthermore, it was Richard Bernstein, an engineer back in 1970 who was losing his battle with Type 1 diabetes, that bought this hospital meter for his own personal home use. With the help of the Ames meter, he was able to get his blood sugar under control and reverse the damage high blood sugar was doing to his body. He then wanted to share his success with the medical community, who were less than interested. Undeterred, he pushed the Ames Company and the diabetes treatment community in general to develop the personal blood glucose meter. Dick Bernstein's fight with the medical community is what spurred him to enter medical school at age 45 and become one of the first diabetologists.

I hope you have enjoyed learning about my health care heroes and the ways that you can be a health care hero too by being a clinical trial research participant, blood donor, bone marrow donor and/or organ donor.

Thanks again to all my health care heroes!





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Friday, June 19, 2009

My Heroes: UCLA Livestrong Survivor Specialists, Drs. Casillas and Ganz

Today I highlight two doctors who are part of my long-term cancer survivorship medical team, Dr. Jackie Casillas and Dr. Patricia Ganz. Together, they make up the UCLA Livestrong Survivorship Center of Excellence at UCLA Medical Center. Since the Fall of 2006, they have bought this new service to cancer survivors in Los Angeles and all of Southern California with the help of a grant from the Lance Armstrong Foundation. This is an invaluable service that before 2006 did not exist at UCLA.

What makes these doctors' efforts unique, pioneering and heroic are:
  1. their acknowledgment and validation that cancer treatments cause late effects in cancer survivors. I have often said that, back in 1988, my oncologists forgot to give me the owner's manual to this new and strange behaving cancer-free body that they returned to me. For over 18 years, most doctors just scratched their heads and thought I was a hypochondriac (or worse!) It wasn't until I was seen by Dr. Casillas for the first time in October 2006 that I really felt like a doctor got it (and me) about being a long-term cancer survivor.
  2. their interest and drive to further both patient care and research in this long overlooked area. Dr. Ganz was a member of the Institute of Medicine and National Research Council Committee that wrote the book From Cancer Patient to Cancer Survivor: Lost in Transition and Implementing Cancer Survivorship Care Planning. Dr. Casillas is part of the Childhood Cancer Survivor Study and a member of the Children's Oncology Group's Long-Term Follow-Up Guidelines Task Force.
  3. the time and attention these doctors take with each cancer survivor that comes to see them. In my experience, it is rare to find a doctor that has more than 20 minutes to spend with you. Each time I go for follow-up with the Vital Information and Tailored Assessment (VITA) program, I spend at least (and often more than) one hour with Dr. Casillas and up to an additional hour with the nurse practitioner and social worker. I received a comprehensive multi-page survivorship care plan after each visit and referrals to other medical specialists for follow-up of the late effect issues identified in my visit.
Dr. Patricia Ganz is an adult oncologist who is best know for her work in the area of breast cancer. She has also lead the way in research on the assessment of quality of life for cancer patients. She has been a doctor and member of the medical school faculty at UCLA since completing her training in Hematology and Oncology at UCLA in 1978 and she has been the director of the Division of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center since 1993. The recipient of numerous accolades and honors, she was awarded an American Cancer Society Clinical Research Professorship for Enhancing Patient Outcomes in 1999.


Dr. Jackie Casillas is a pediatric oncologist who has been on staff at UCLA since 2001, after completing a fellowship in pediatric Hematology and Oncology at Mattel Children's Hospital at UCLA. Her research interests include access to care, quality of life and quality of care for long-term survivors of childhood cancer. She is an active member of several organizations and committees, including the American Society of Pediatric Hematology/Oncology.

Words can not express how validated, understood and relieved I feel each time I leave my yearly appointment with Dr. Casillas. These doctors and this program is a godsend to long-term cancer survivors like me. Thank you, long-term cancer survivor health care advocates, and my personal health care HEROES, Drs. Casillas and Ganz!


























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Thursday, June 18, 2009

My Heroes: Diabetologist Dr. Anne Peters

Today I am going to introduce you to one of my own personal health care heroes. She is my endocrinologist, Dr. Anne Peters. She is nationally and internationally known for her expertise in the area of diabetes care, but to me she is my really caring and understanding doctor who listens to my concerns about having Type 2 diabetes and helps me get my blood sugar under control. She also helps my husband manage his symptoms of metabolic syndrome (characterized by high blood pressure, high cholesterol and insulin resistance) which seems to be a hereditary condition in his family.

Dr. Peters leads something of a double life: I see her at the Westside Center for Diabetes in Beverly Hills, but she also sees some of the poorest and most disadvantaged persons living with diabetes at the Edward R. Roybal Comprehensive Health Center in East Los Angeles. Her work at the Roybal Diabetes Management Program was featured in Remaking American Medicine: Healthcare for the 21st Century on PBS in October 2006. Her innovative approach includes plenty of face-to-face time with newly diagnosed persons with diabetes, teaching them about all the aspects of living with diabetes, including:
  • blood sugar monitoring
  • taking medications correctly
  • managing and preventing low and high blood sugar
  • the importance of proper foot care and regular eye exams
  • eating smarter and managing weight
  • counting carbohydrates that effect blood sugar
  • dealing with the psychosocial impact of living with diabetes
Her team includes nurses, diabetes educators, nutritionists and peer educators This approaches shows patients that they are not alone in dealing with their diabetes; there is a team behind them to support them. In this way, Dr. Peters and her team strive to reduce the number of hospitalizations related to diabetes into the Los Angeles County Department of Health Services, which in turn helps to stretch dwindling County funds for health care.

Dr. Peters shares her knowledge with other in many ways, including the publication of her book
Conquering Diabetes: A Cutting Edge Program for Prevention and Treatment. You can also find her advice for both Type 1 and Type 2 diabetics free online at knol. She actively lectures, writes and conducts diabetes-related research. In addition to other numerous awards, she became the recipient of the American Diabetes Association's Distinguished Clinician Award in June of 2008.

I wish you co
uld meet Dr. Peters in person so you could understand just how special a doctor she really is. Since this is neither practical or possible, I thought I'd share this quote from a 2006 interview with Kelly Close of Close Concerns Consultancy. I think it really captures Dr. Peters' true spirit:
Ever since I was a little girl, I've always been interested in helping the underserved. It's a long story, but I went to PS 40 in New York City when I was little and they had twin desks where they would sit a good student with one who wasn't doing as well in school. I sat next to a little African-American boy, and my goal in school was to teach him how to read. Unfortunately, he was sick so much that he could never come to school, so I could never teach him to read and that is when I began to realize the effect illness had on education and poverty. At that point, I first decided that I wanted to work in underserved communities. I have always done volunteer work, and I try to give back to people who have less than I do.
I am proud to say Dr. Peters is my partner in managing my Type 2 diabetes. Her unique approach to patient care is what makes her my HERO.


Diabetes: Diabetes Prevention


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Wednesday, June 17, 2009

My Heroes: Organ Donors

Now that you have learned in my last post about Dr. Joe Murray and his pioneering work in organ transplants, it's time for YOU to become a hero by being an organ donor. First, here are the facts about organ donation, courtesy of the website DonateLife.net:

"Learn the Facts
Despite continuing efforts
at public education, misconceptions and inaccuracies about donation persist. Learn these facts to help you better understand organ, eye and tissue donation:

  • Fact: Anyone can be a potential donor regardless of age, race, or medical history.
  • Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.
  • Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.
  • Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.
  • Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.
  • Fact: There is no cost to the donor or their family for organ or tissue donation.
  • Fact: Signing a donor card and a driver's license with an "organ donor" designation may not satisfy your state's requirements to become a donor. Be certain to take the necessary steps to be a donor and ensure that your family understands your wishes."
Second, you need to know the steps to take to become a organ donor and the website OrganDonor.gov has it all broken down for you, including a PDF download of a printable organ donor card AND a link to request one by mail. The steps are:

  1. Register with your state's donor registry (just follow this link to get started.)
  2. Make your decision known on your driver's license or ID.
  3. Sign and carry an organ donor card NOW (just follow this link to the PDF and donor card by mail request links.)
  4. Share your decision with family and friends so they can advocate on your behalf when the time comes.
Lastly, according to the United Network for Organ Sharing (UNOS) website, RIGHT NOW there are 101,945 people waiting for an organ transplant. From January to March 2009, 6,998 transplants have already taken place from 3,566 donors. These organ donors and their families are HEROES in my book.


Be a hero too. Be an organ donor!





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