Category Archives: Healthcare

A Good Marriage Is Easy To Spot

How do you know your marriage is good?

Passionately and deeply in love?  Want to spend all your waking and sleeping hours with that one person?  Enjoying today, together  but planning for tomorrow?  Moving in, setting up a joint bank account and sharing the day-to-day tasks of living?

Every one of these could indicate a strong relationship, a good marriage.  Anyone of them could also be just a symptom of what looks like a good marriage.

The first time one of you makes a bad decision, you’ll get a look at what underpins your marriage.  Lose the savings account on a bad investment and watch the argument rip from money to control and back again.  Or make a bad choice morally – just once and it didn’t really mean anything.  But your partner may not be able to bridge the gap between the before and the after.

The truth is anyone can have a “good” marriage when things are going well.  The acid test only happens when things go badly.

Sometimes, bad choices can make or break your marriage depending on how you and your beloved handle it.  But what happens when no one makes a choice but both of you have to live with the consequences?

What happens when one of you gets sick?  I don’t mean a head cold or the flu.  I mean sick unto death.  In our case, it was cancer.  Will you run or will you stay?

It has been 10 years since our journey began, 10 years of chemo therapy, surgery, hospitalization after hospitalization.  Sitting here, reading my journal from the days when I thought, we both thought, that treatment would be fast, surgery would finish it, tears are streaming down my face.  What happened to my husband, to us, still cuts to the bone.  Our loss runs deep and wide.  Our sorrow is endless.

But our marriage not only survived, it got stronger with every treatment, every surgery, every hospitalization.

Since he was diagnosed with cancer, my husband and I have spent every vacation, every year, in that very expensive resort with very small rooms, a single bed and terrible food.  Hitting 34 hospitalizations in this, the 10th anniversary of our relationship with cancer, we are closer together than ever, enjoy each others company over that of almost anyone we know and wish only for one thing, at least another 10 year of whatever life has to throw at us.

It seems ours is a good marriage.

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Yes You Can Recipes That Are Tried & True

Yes You Can Recipes That Are Tried & True.

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Filed under Budgeting, Healthcare, Home Ec on Acid

Remembering My Big Brother

As you get older, months take on different significance.  Months that used to be filled with birthdays, anniversaries and graduations now harbor dates where someone you love learned he was dying and months where father, brother, mother, died.

June is one of those months for me.  My brother Mike learned he would die of a brain tumor in June.  I think he suspected that he was dying but the doctors confirmed it on June 11th, 2007.  I spent the next 2 weeks living in Virginia, fighting for tests, for hope, because my sister-in-law could not.  She was in shock; she was  losing her husband of 43 years.  But there was to be no reprieve.

Every weekend for 8 weeks, my husband and I drove to Roanoke on Thursday evening or Friday morning and stayed with Mike and his wife.  We brought wine, and steaks, pies, homemade chocolates and our love.   Days and nights were spent holding his hand, talking, laughing, watching his favorite movies, listening to his favorite music, his only music — classical.

Poignant moments came at odd times like when he stood in his hall, looking at his CD collection and said, “No one will want my music when I die.”  Or the time he looked up and me and said, “Why my words?  Why is this tumor taking away my words?”

How do you answer questions like that?  I answered by taking his hand, holding it, telling him I loved him and slowly, slowly moving him back toward living and away from the edge of his own death.

During those last weeks, he and I completed his last project together – putting the rails on the stairs to his front deck.  Sounds like a simple job but it wasn’t.

Mike couldn’t calculate anymore.  My genius, electrical engineer, computer programming wunderkind brother could no longer do math.  I never could.  But for 8 hours, on a Wednesday, he and I struggled to space the spindles on the last remaining stairwell on the deck.  And we did it exactly correctly.

Oh I tried to do it easy – just aligning them with the spindles on the other side but Mike had lost his math skills, not his personal power.  So, slowly, carefully, dividing to a 13th of an inch, he and I put those spindles in place.  And when we were done, we sat on his glider, on his newly finished deck, poured the last of his 21-year-old Scotch and drank to each other, to the deck and to the day.

Michael died on August 8th, just 9 weeks after he received his death sentence – malignant astrocytoma – brain tumor.  But he lives on, those days and weeks live on, memories, celebrations to a life well and truly lived.

It is June and I celebrate you Mike.

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You Are What You Eat…Really!

I’ve been thinking about my brain a lot lately.  Why?

I lost both of my brothers to brain tumors, one of them just one year ago.  And I just got a chance to see Jill Bolte Taylor, a neuro anatomist, talk about her 8 year recovery from a massive stroke.

So, what’s been on my mind, literally, is how does this thing up there work and how can I keep from growing a brain tumor?

The answer that seems to rising to the surface these days is surprising.  You are what you eat and your food choices could be killing you.

Dr. William Li, President, Medical Director, and Co-founder of the Angiogenesis Foundation, works with other well-known scientists and physicians a unique approach to fighting and in some cases, preventing, some of the most debilitating diseases affecting men, women and children including cancer and stroke.

Angiogenesis, the growth of new capillary blood vessels, is a naturally occurring process in the human body.  But when capillary blood vessel growth is inhibited or stimulated, disease processes can begin.   Researchers at the Angiogenesis Foundation are successfully using drug therapies to treat cancer but despite tremendous successes, Dr. Li feels that instead of treating the disease, we should be preventing it.

One weapon we can use to try to restore balance to blood vessel growth is food.  In fact, over a year ago, during a TED talk, Dr. Li released a list of foods that might help in the fight against disease, foods that Dr. Li says, “…cut off the supply lines and beat cancer at its own game.”   His theory is that we can eat to starve cancer.

So, what’s on the doctor’s menu?

Blueberries, strawberries, tomatoes, raspberries, red grapes, dark chocolate, olive oil, tuna, green tea and red wine, soy, kale, licorice, bok choy and grapefruit among other foods.  The point is that what we put in our mouths makes a difference not just in how we feel, how much we weigh, how much energy we have but in how our bodies stay healthy and fight disease.

So thanks to Dr. Li and the Angiogenesis Foundation and a tip of the hat to nutritionist Victor Lindlahr, who in 1942 published  You Are What You Eat: how to win and keep health with diet, who knew, 70 years ago that we really are what we eat.

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Speaking of Strokes & Life

When Jill Bolte Taylor speaks, a whole lot of people listen.

She is a phenomenal speaker.  She strides on stage, no notes, no teleprompter and for 70 minutes, holds the attention of the  audience.  Animated, funny, and so crystal clear when talking about neuroscience and our brains that I get it,

Dr. Taylor is a joy to listen to.  She should be difficult to understand, a Harvard trained neuro anatomist, a pointy-headed intellectual with credentials that would make most of us take a step back.  Instead, she is someone who draws people in, makes them laugh and opens up her world and her life to us.

Her rise to fame has been quick; her journey to get there was incredibly difficult and long.

In 1996, Dr. Taylor,  had a massive stroke.  This brilliant scientist was so disabled that she could not walk, talk, read, write or recall any of her life.  Putting on shoes and socks became a challenge.  Figuring out why 1 + 1 equaled 2 took her years.  All linear processing was gone. For many, this would have been the end; for Dr. Taylor, it was the beginning of an amazing transformation.

All in all, it was 8 years before Dr. Taylor could reclaim her life, herself.  But in returning to her life as a neuro anatomist, she brought something else with her.  This left-brain scientist was now totally, completely in touch with her right brain.

During her now famous TED Talk, Dr.Taylor describes the two halves of her brain warring for her attention – left brain screaming, “…hey, you’re having a stroke.”  Right brain saying, “Hey, wow, we are perfect, we are whole and we are beautiful.  And we’re all connected.”

Jill Bolte Taylor is a medical phenomenon because she defied the common diagnoses that says you only have 3 months, 6 months 12 months to recover functions like speech and walking.  She is also a phenomenon because she returned to her life changed by the spiritual experience of connecting with her right brain.  Scientist and artist live together inside her now.

She is among Time Magazine’s 2008 top 100 most influential people in the world.  Also appearing as  a guest on the Oprah Winfrey Soul Series and on Charlie Rose’s show, Dr. Taylor’s life caught the attention of Hollywood mega-director, Ron Howard who is making a movie based on her book, My Stroke of Insight.

Spend 18 minutes with her on TED and if you get a chance, read her book or see her speak or do both.   Or just answer her question:  You are the life force power of the universe; how will you spend your energy today?

 

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How Does Healing Work?

Don’t you wish that you knew the answer to that question?  Or just a bit of the answer?

I know I do.  I am healing.  This I know for sure.  What I don’t know is exactly how it is happening.

My medical team says I have Post Traumatic Stress Syndrome (PTSS) and…oddly enough, whiplash.  Both are being treated but not by traditional, Western medicine.  No prescriptions have been written for mood elevators or muscle relaxers.  Instead, the prescription has been a combination of:

  1. Osteopathic manipulation
  2. Psycho-therapy
  3. Mind-Body healing

Woven into these three practices are homework assignments.

When Dr. Gajdos said go forth and journal, it didn’t sound like a big deal.  But over the course of writing 3 pages, long hand, every day, discoveries occur, insights reveal themselves.  Reasons for behaviors become clearer and paths to changing the behaviors stretch out before you.

Dr. Gajdos also asked me to read  A Year To Live .  It’s a small book written by a man whose life has been spent counseling dying people.  Steve Levine’s advice is to work on dying, right now, seems depressing but working through anger, sorrow and pain, now, is freeing me up to live in the present moment.

Reading Being Peace came from Dr. Torregiani. Thich Nhat Hanh is an author whose writings are not easy but whose messages are clear and powerful.  His teaching is that of most Buddhist monks – the here and now – the present moment are all we have.  It is the way he shares his message that makes it easier to understand, easier to practice.

Reading myself came from Jodi Hutchinson.  Jodi is a highly trained Physician’s Assistant, at least she was.  She worked for one of the top Cardiologists in Delaware and was his “right hand man.”  When the Cardiology team from Christiana Care traveled to China and other Asian countries, Jodi began a journey of her own.  Her journey has led her to healing with her hands and her heart.

Learning to settle inside your own life, your own soul, your own skin, facing your fears, walking through your pain to the other side, to the light.  That is what all these activities are designed to do.  What’s beautiful about them is they don’t require new running shoes or spandex shorts.  All they require is desire.  And these activities are working for me, healing me, making it possible for the slow, sure stitching back together of my soul to happen.  To my team I say, “Namaste.”

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Goats In The Hospital Halls

There a thousands of people working in the major metropolitan hospital my sister almost died in — many doing their jobs then going home at night.  And there are a handful of heroes in most hospitals, even this one.  But there are also goats, herds of them, wandering the halls, bleating their value to the world.  These goats graze at the top of the healthcare food chain; these goats will kill you.

One of our goats was a Resident — what I call a “baby doc.”  In one 24 hour period, without touching her and undoubtedly without reading her Electronic Medical Records (EMR), this Resident – I shall call him Dr. X, managed to take a person who was in for surgery and reduce her to a patient teetering on the brink of death.

Here is the short story of how Dr. X almost killed my sister.

Friday morning, my sister complained of excruciating pain in the gall bladder area but no one listened.  Just 8 hours later her kidneys started to fail – urine the color of iced tea and very little of it in the catheter bag.  I told the nurse, and asked for a consult with someone right away.

The nurse paged Dr. X 3 times with no answer.  By then it was 6PM and there was no urine output.  At shift change, the night nurse was really shocked by her condition, paged Dr. X and finally got him to commit to come down.  The baby doc appeared at 8PM but he wasn’t there to help, he was there to dismiss.

I asked him if we could consult a urologist; he said no.  I asked for a consult with a nephrologist; he said no.  The nurse specifically asked about getting “a visualization of the kidneys.” He said no.   Four hours later, at 12:40 Saturday morning, the nurse told Dr. X his patient was in full kidney failure and asked if he could take cultures to measure my sister’s kidney function, Dr. X said no.

When paged again, Dr. X showed up again at 3:30AM to “talk with us” and was about as helpful as a plank – not listening, dismissing the problems and both of us.  In full kidney failure and literally drowning, with creatinine levels that had almost tripled and hyper bilirubin anemia, my sister was clearly heading for a casket but Dr. X didn’t seem interested.

I followed him to the Nurses’ Station and demanded a consult with urology.  What I got was a consult with another Resident – this one from Internal Medicine.  Dr. X thought this might shut me up.  It made Dr. X shut up.  This Internal Medicine Resident read her EMR, talked with Ryan and me then examined Meg, who was beyond words.  Then he did what most doctors would never do – he literally removed my sister from Dr. X’s care.  He saved her life.

In Intermediate Care Unit, he put together a team that included all the consults I had asked for and then some — nephrology, urology, pulmonology, cardiology and gastroenterology — and they got to work fast.    Surgery occurred that afternoon and the Chief Surgeon told me they just got to her in time – she had less than 12 hours to live.

This is the proverbial cautionary tale with one moral.  No matter how big the hospital is, no matter how great its reputation, people just like my sister die there NOT because it is “their time” but because goats like Dr. X get a hall pass.

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In Love, With Cancer

It always starts the same way…a phone call, a finding, “We’re hopeful that…”

Cancer has been my constant companion for more than 10 years now.  It tapped my husband first and took me to my knees as the hours, days, weeks passed.  He survived but at a series of terrible prices which I will share over the coming weeks and months.

Four years ago, my oldest brother was diagnosed with a malignant cytoma in his brain.  The Cyber-Knife showed a sister tumor and they sewed him up.  He died in two months.

Last May, my brother Bob had a cerebral hemorrhage brought on by a large, malignant tumor in his brain.  He died in two weeks.

Today, right now, my older and dearer sister is battling for her life, a 25 centimeter ovarian tumor taking over her abdomen and her every conscious moment.  She is in an ICU, on a vent and still has another surgery to go.

With each of them, I have suspended my life, shut it down to the 10 foot by 12 foot white prison cell called a hospital room.  Watching, caring, calling out what I see and demanding attention when it was needed.  Day after day, and in many cases all through the night, I have lived with them, breathed for them, watched them, prayed for them and advocated, always advocated for them.

Everything else fades away and life narrows to the hospital bed, the pinpoint that demands all your attention.  You are tired to the bone and still you stay, you watch, you help, you cry.  You ache in your joints and in your heart and still, you stay, soothing, calming, trying to reassure.  You forget what day it is, when you last ate, what a hot cup of tea tastes like, what it’s like to lie down in a bed to sleep instead of a chair and still, you stay.

That’s what it means to be in love…with cancer.

Heading back to the hospital to hold her hand, tell her where she is, what is happening and what will happen next.  I will write more about this, about the nurses who are heroes every day and about the good, the bad and the ugly of health care and hospitals.

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