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Archive for the ‘Cancer’ Category

Last weekend was my once-yearly trek to the EMS conference in the boondocks. Last year I learned to birth a robotic baby, this year’s highlight was watching my good friend Jay, who 6 years ago was battling cancer, stand up strong and confident and present on professionalism in fire and EMS services.

Let me tell you a little bit about my friend Jay. He is my ex-husband’s best friend (they grew up together and have the war stories to prove it) and I met Jay and his family about 10 years ago. He is now a paid firefighter/paramedic in Fort Myers, Florida and teaches at the local fire academy and the high school votech program. He was diagnosed in October 2005 with Burkitt’s type non-Hodgkins Lymphoma, a blood disease so rare that only about 100 people are diagnosed each year. Jay, his loving wife Rhonda, and their six wonderful children fought the disease for over a year.  I have learned a lot from Jay – how to deal with the hand that your dealt no matter how unfair it is, how your attitude can effect the way your battle goes, how important it is to be courageous, how good people will receive good support. Quiet dignity and courage are the two best ways I can think of to describe Jay – and I struggle every day to live up to that example.

Jay and Rhonda both have been wonderful to me through the course of our friendship and my divorce. Despite what could be expected in terms of loyalty, they have not walked away from being my friend – like so many others have. They are at the end of the phone line or the Facebook message when I need them. I am grateful for that.

This EMS conference is now one of the most difficult events for me in my post-marriage life. I have to gird my emotional loins [on a side note, what a greatly colorful phrase, just saying] to attend. This conference is one of the few things my ex-husband and I ever did together. The fire service (along with baseball) was one of the few shared interests we had – and so we did things like this as a couple. And this particular conference was and is always filled with our mutual friends and fellow fire/EMS providers. For those of you who aren’t in the fire service, it can tend to be a very tight knit, close community. Which, when the shit hits the fan, is the best thing in the world – you know that it is your friends and pseudo-family members who are going to come to your aid. But, when your life has fallen apart, it also means that they are ALL going to know about it – and when your ex is also a beloved member of that same pseudo-family, it creates an abondanza of awkard moments. None of your mutual friends want to refer to The Breakup, yet they all know (or think they know) what really happened.

The flashbacks are staggering, those moments when you time travel back to happier days, when you can forget that things have changed. When you run into an old friend who doesn’t know you’ve divorced or you come out of a class and want to share your new knowledge with your life partner. When you go through your skills evaluations and want to celebrate your successes with your husband like you used to. I know that I’m not the first to experience this – those moments of forgetfulness are probably pretty common for anyone who has suffered a loss – but they still twist the knife of grief. I am haunted by the ghosts of lost friends, sad memories, and a firm place in the support system of the local EMS community – no longer can I consider myself a full member of the team because I have lost half of who I was. And the ghost of the Ex lurks around every corner, waiting to slam into me – will he be there? Will he come to the conference and will he bring his new woman? Rationally, you ask yourself – why do you worry if he appears or what he does? Yet emotionally you worry at every moment about the ghosts of him will come out to haunt your present.

So this year’s conference, with Jay as one of the keynote speakers, was one of the most difficult yet. I adore Jay – see the above description – but I also can’t ignore the fact that he is one of my ex-husband’s best friends and has been for over 30 years. How to greet a good friend who, understandably, has loyalties to the man who destroyed my life? How to face a friend who has probably heard every bad thing that my ex can construct about me? How to look in that friend’s eyes and not beg for forgiveness for not having been good enough for his buddy?

The good news is that I learned a lot at the conference. Not just the practical skills-based knowledge on pharmacology and airway management or the new technology for battling ‘dirty war’, not just the steps for a good radio consult with the trauma center or about the protocol updates in Maryland EMS. I learned that I am truly a different person now than I was before. I am damaged goods, yes, but I am also able to stand straight and hold my head high. to ignore the whispers of gossip and to make jokes about the bumpy road I’ve travelled. I am not better for the experiences of the last 2 years – but at least I am stronger.

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She wore a pink tutu and her cowboy boots, and her big brother’s superman cape

Shootin’ down dragons from her little red wagon

 To keep the backyard safe

Stubborn as a grass stain,

runnin’ ’round in french braids,

 tough for such a little girl

Livin in a big boys’ world–

Oh–she’s a pink warrior

She’s a fighter like her mama always taught to be

Got an army of angels marchin around with her

She won’t give in

Yeah she’s gonna win

She’s a pink warrior

~from the song “Pink Warrior” by Candy Coburn, written as a tribute to those battling cancer~

As a general rule, I have avoided the color pink for my entire adult life. Not only did it symbolize, in my twisted mind, ultimate girliness, it somehow translated in my head to a sign of feminine weakness. Don’t ask me WHY a color could symbolize vapid, brainless, spineless women – it just did. Shades of cotton candy, pepto-bismol, strawberry cream, hot pink and everything in between was avoided at all costs.

Lately, though, I have found myself incorporating more of the strong, bold pinks into my wardrobe, my accessories, and my color palette. Not the fluffy, frilly girly pink but the rich, deep berry tones. I no longer hide from my most-random paranoia of pink – now I celebrate its depth and a return to a more feminine me.

I am so excited that I have rediscovered that, yes indeedy, I am a woman! I can be strong and yet vulnerable, tough and yet able to cry at chick flicks. I thought that my spirit had been killed by the events of the last 8 years of my life. But I am rediscovering that, underneath the dead pain, is a girl with a brain, a woman with a fire, and a human being with passion. Bring on the pink!

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Two Christmases ago, my friends Tim and Patty were told that their teenage daughter had bone cancer. Less than a year later, after a long and very difficult battle, Megan earned her Angel Wings. I learned an amazing set of lessons from watching the family struggle with the illness, the end, and now the surviving afterwards.  

 Dr. David Loeb is a leading pediatric oncologist at Johns Hopkins and has treated Megan and helped to fight her cancer. He wrote two blog entries about the McNeals and Megan’s wonderful spirit and bravery and attitude. I thought I would share them both with all of you so that Megan’s legacy is long and far-reaching.

I can’t speak for anyone else, but I know that Megan brought me the gift of hope and faith in humanity, community, kindness, and courage. I celebrate Megan’s life and lift a prayer of thanksgiving for the wonderful gifts she brought to the lives of everyone she knew.

I know many heroes – cops, firemen, paramedics, dispatchers, teachers, nurses, etc. – but with this I want to honor a family who defines the very term. Please, when you are saying your prayers tonight, say an extra one for a wonderful young woman and her loving family who have taught me about love, peace, courage, and strength.

Tuesday, August 4, 2009
“I don’t know how you do your job”

Most days, I love what I do.

Today was not one of those days.

Today I sat down with a 13 year old girl that I take care of, along with her parents, and we reviewed the results of her most recent scans. The news was not good. A month ago she had no evidence of disease. Today, there is a large mass on one side of her skull, a smaller mass on the other side, a dozen nodules in her lungs, and cancer throughout her pelvis, in both thighs, and in her arm. A mass near her left hip has caused what we call a “pathologic fracture,” which means the tumor has broken the bone, causing a lot of pain.

Needless to say, I made her cry. Her parents, too. They all know what this means. She told me she doesn’t want to die — she only wants to live. I wish I could help her achieve that goal, but I know I can’t.

So many things can come out of days like this. Today I was impressed by the capacity of the human soul for compassion. After I told the patient what was going on, her father looked at me and he said, “I don’t know how you do your job.” Despite what I had just told him, he was concerned about me!

Later in the day, I went back to check on the family. I caught the patient’s mother in the hall and we talked. We spoke about palliative care … about making the most of the time her daughter has left … and I asked if she thought the patient wanted to see me again. I was surprised by her answer.

She told me that I should go in and talk to her daughter. Partly because her daughter likes me and is always cheered up by my presence. But… she also said, “I think it will be good for you, too. I saw the tears in your eyes. It might be good for you to see her looking happy.”

Wow. This morning, she found out her child had months to live, and this afternoon she was concerned about me. She was trying to comfort me!

The human spirit is amazing sometimes.

Sunday, October 11, 2009
I went in to say “Good bye”

We knew this day was coming. Over the summer her cancer came back even though she was getting chemotherapy. We switched gears, giving radiation and chemotherapy aimed at controlling pain, no longer at curing disease. But that doesn’t make this day any easier.

Overnight, last night, it became harder to breathe and her pain worsened. A chest x-ray showed almost no air getting to her left lung. Hoping there was fluid that could be removed, she had a CT scan today; but there was no fluid, only tumor. Tumor that hadn’t been there 10 days ago.

I went in to the hospital today, to see her one last time before she went home. We watched some of the football game together. We talked about her kindergarten teacher, a brave woman who was a tremendous support before she died of breast cancer in August. She told me about the tombstone she wants – a softball diamond with a girl sliding into home plate, with a caption that reads, “Safe at home!”

But rather than complaining, or asking “why me?” the young woman and her family had different plans to discuss. Their community had raised a large sum of money to help cover medical expenses, and there is going to be a lot left over. As her father said, “The community has done a lot for us. We need to give something back.” So, on the day she was going home, my patient was deciding how she was going to help her community.

They decided to give some money to a fund established in memory of her kindergarten teacher. They decided to give some money to a neighbor who, because of sudden illness, had fallen months behind on his mortgage payments. And they talked about how they could still contribute to Ewing sarcoma research. “Just because this is happening to me, doesn’t mean I don’t want to keep trying to help,” she said.

I hope that when I am in her situation, I can show half as much grace as she did this afternoon.

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++ does anybody else remember those old color-changing shirts that changed color when you touched it? What were those called? I have a cool plastic cup that I got at Winterfest that does the same thing – changes color when you put either hot or cold water into it. It sure is nifty!! Wish I could find that old shirt, too, and then I’d be all set.

++being fat in this world really sucks! I have to watch what I eat and suffer through weekly Weight Watchers meetings and feel constant emotional turmoil over food – and yet I STILL DON’T LOOK LIKE A SUPERMODEL! GRRRRRR….

++stupid people and mean people should not be allowed to call me before noon – it ruins my whole day!

++thank God for good friends who care enough about you to suffer through endless whining and are just there when you need them – thank God too for the ones who reach out and force you to be a part of the human race and don’t let you retreat into a hole

++I have been having the weirdest dreams lately – – I even had a long conversation in one last night with my friend Liz who died 3 years ago — and I wonder if my subconscious is as restless as my conscious mind…

++do you ever wish you could just close your eyes and *poof* land in some other place? And be some other person? And live some other life?

++I worry constantly – I feel like I am constantly fussed about something — I wonder how I can stop that….? I worry about my friends near and far, I worry about my family and their fun dysfunction, I worry about my life (or lack thereof), I worry about my work, I worry about whether I turned off the coffee pot this morning. I just worry.

++I’m re-reading the most phenomenal book right now – the 1st volume in a biography of Eleanor Roosevelt. Talk about girl power – she was so far ahead of her time in issues like women’s educations, gender equality, civil rights, political power, economic fairness!

++I have always wanted a pair of multicolor striped toe socks. I don’t know why. And the only time I ever really see them in the stores is at Christmas time and I am always saving my pennies for Christmas gifts, so I never buy them for myself. But I just think those toe socks are a real hoot. Maybe I’ll buy them with the color-changing shirts….

++I really have strong objections to the Country School here in Easton. This private, high-tuition school thrived during integration in the 1950s in order to prevent white kids from having to *gasp* go to school with black kids – and that really just sets my teeth on edge. And, honestly, that school is still that elitist! Only now it’s the rich kids who won’t mingle with the poor kids. Yikes, what values are we teaching our children?

++am I a freak? A friend (thanks so much SJ) told me that years ago and it STILL intrigues me. And that friend wasn’t just talking about my clothing choices. He was talking Usher’s “lady in the street, freak in the bed” type of freak. I’ve never thought of myself as being terribly interesting in the sexual kind of way (god knows my husband certainly didn’t think so) but yet I wonder….?

++I don’t care what anyone says, I like classical music! I just found a wonderful Bizet suite (L’Arlésienne) that makes me want to shiver. I listen to it in my truck sometimes and think, “yep, I am SUCH a nerd!” but I can’t help it. Of course, I’m not totally hopeless in cool – I know almost every Billy Joel song ever written, Elvis is King, Wynton Marsalis and/or Barry White is good bedroom music, Marvin Gaye rocks the nightclub, and nothing says country like George Strait.

++a high school acquaintance is a marathon star now and thinks I ought to take up running – isn’t that funny? Girls with big boobs just don’t run a lot – unless they have a VERY strong system of undergarment support. Of course, he also thinks I should get a tattoo up my nose, so I’m beginning to wonder about him.

++if you ever need a “reining in” of your life, visit a friend who has a 13-year old kid battling cancer. Talk about putting your problems into perspective! If I had half of the courage that cancer patients and their families have, I’d be a superhero. I have so much respect and admiration for people who can face that kind of illness and fight that battle!

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