My Dr. McCool

Last night the local television station obviously was in need of a health story to use for the holiday weekend.  And while I’m out of town and missed it, several friends sent me a message that KTHV used a story from last year’s Breast Cancer Awareness Month package, an interview with my Dr. McCool – or as they spell it at UAMS, Dr. Issam Makhoul. 

Here's the link.  It’s actually an interview with both of us.  And while the story gave too much credit to the spirit of the patient, I will always know that it was Dr. Makhoul who cured my cancer.  As I shared with friends this weekend, if I had chosen to receive cancer treatment from a dentist in Booger Hollow, I don’t think my spirit of resolve would have taken my cure very far.  While the spirit of the patient is important, it’s the brilliance of the doctor and the medical team and the clinic that delivers the cure. 

Watching the clip via the Internet reminded me about so many things about this wonderful physician of extraordinary ability, and I must share, wondering if you agree.

Today, there’s a real buzz about being an active or informed “health care consumer” with some going so far as to mention “consumer-directed health care.”  While I agree that being an informed patient is a wise move, I own a B.A. degree in social science!  It would not be in my best interest to try to be the director of my cancer care.  What a disaster – which is why the credentials of the physician and the doctor-patient relationship are the crucibles of quality health care.  

In the eyes of UAMS and Dr. Makhoul, I have always been a patient in need of medical care – not a health care consumer.  And I never believed their patient care and treatment services to be a commodity.  Far from it! 

I’ve always been amazed at how much time Dr. Makhoul spends with each patient, never rushed, always explaining in detail the science of the disease, the pros and cons of treatment options, side-effects and obstacles.  I could read all day about Inflammatory Breast Cancer and never be a step ahead of this man. It would not be long before I began to ask him one question:  “If I was your sister, what would you recommend for me?”  He would then share his suggested course of treatment, and that was ALWAYS the choice I made. 

(A note of humor:  For those of you who know Tim, you won’t be surprised that one day we were leaving UAMS and he said to me, “I sure hope Dr. Makhoul likes his sister.”  It would be Tim’s humor that surely got me through some tough times.) 

Dr. Makhoul and Nurse B and Nurse Michelle – they will forever be my medical caretakers (along with Drs. Klimberg and Yuen) and I will always be their patient.  And that’s the kind of relationship I want with my health care provider.

Thank you Dr. Makhoul.  It’s now May 30, 2011.  It’s been 468 days since I’ve been in your care.  One year, three months and 14 days later, I still feel an incredible sense of faith in your abilities, and UAMS too.  And for that, I am very grateful.  

Leaving on a Jet Plane

Other than a few car trips to Missouri to see Allyson graduate or visit her in St. Louis, the last real vacation I had was in June 2009, a wonderful trip we took to Springfield, IL, and then several days in Chicago.  Before that, Tim and I took my parents and their friends John & Nancy Anthony on a Blue & BBQ road trip through the Mississippi Delta.  But it’s been over two years since I’ve been on a plane trip.

Today I feel like a kid in a candy store, as in a few hours I’m boarding a flight to Washington, DC – my very favorite place in America!  I’ll attend a conference on America’s competitive workforce Wednesday through Friday.  But between now and then, I’m looking forward to several days of rest and great fun with longtime friends from college. 

Used to for me, living meant traveling.  I’m kind of like George Bailey in It’s A Wonderful Life when he said that the three most exciting sounds in the world are anchor chains, plane motors and train whistles.  But travel hasn’t been in the cards for me in quite a while.  So I’m very excited about getting on a plane and taking off for a new adventure. 

Traveling in my new normal world is quite different.  Anytime I get on a plane, it now requires wearing a lymphedema sleeve on my right arm.  The sleeve reminds me of a wet suit for the arm – a very tight compression garment to prevent the onset of lymphedema. 

Most people don’t know what lymphedema is until they have it.  For me, it's something I'll hope to prevent the rest of my life.  Lymphedema is caused when there is trauma caused to the lymphatic system – in my case, cancer in the lymphatic system that required surgically removing 17 lymph nodes.  Lymphedema, or lymphatic obstruction occurs when there is blockage of the lymph vessels that drain fluid from tissues throughout the body and allow immune cells to travel where they are needed.  Cancer patients who develop lymphedema do so usually in the first four years after surgery.  It's another post-cancer complication I certainly hope to avoid. 

The physical discomfort is usually fluid retention and swelling in the arm, and sometimes the swelling is constant and horrific.  But the really bad news is this . . . Once you have lymphedema, it’s very difficult to get rid of it.  So, the secret here is PREVENTION. 

Today I have my house sitter well supplied, the dogs fed, bags packed, my ticket in hand, and I’m wearing my very important lymphedema arm sleeve that will be my new companion every time I board a plane. I sure hope this thing works. 

After landing, I’m ripping this sleeve off to enjoy several days in my safe place –  with very best friends who allow you to share your most personal self and not feel afraid.  Our plans are simple – good food and wine, updates on our lives, and mentally traveling on our time machine to recall special days gone by. 

As Thoreau said, true friends cherish one another’s hopes and are kind to one another’s dreams. 

I’m very excited about boarding this plane, but even happier about spending the days ahead with cherished friends.  

I hope you enjoy a very memorable holiday weekend too.  

Cooking Kale – A Super Food (Can I post twice in one day?)

Keeping with my new venture for eating most things local, this morning was another day at the Farmers Market.  I attended two – the new Hillcrest Farmers Market and the Certified Arkansas Farmer’s Market.  Both of these markets only include local farmers with local meats and produce - fresh, clean food from small family farms.  Last spring and summer I was only able to get to the market one time.  But this year is different.  Saturday mornings have become my time to shop each market for the foods I want for the meals I’ll prepare throughout the week. 

Today I bought some lovely chickens from Cove Creek Acres, a local poultry and pork farm located in Clarksville, AR.  And the pork chops we cooked this week from Farm Girl Natural Foods – well, it was simply the best pork I’ve ever tasted.  So, I bought more chops, a pork loin and some sausage.  I also bought sweet onions, kale, mushrooms, more English peas, fresh lettuce, green onions and Arkansas strawberries.  In the meantime, I’ll have to buy out-of-state but organically grown tomatoes at the market.  I sure will be happy when the Arkansas tomatoes are ready for harvest.  There’s nothing much better than Arkansas strawberries and tomatoes. 

  

Yesterday a good friend asked me about my new love for that leafy green vegetable known as kale.  I really didn’t know anything abut kale, never ate it until cancer.  My friend Leslie brought a big bunch of it to my house and showed me a very simple method for roasting it in the oven.  Since then, I’ve discovered it’s an uber-nutritious vegetable full of vitamins A, C and K, and the all important anti-oxidant vitamin E.  Kale is also a great source of manganese, calcium and iron, has no cholesterol, and offers a nice serving of fiber and protein.

I think the reason I never cooked with kale is that it’s much tougher than other leafy greens compared to turnip greens and spinach.  So you’ll seldom find anyone using it to make a salad or cream sauce, even though I’ve since found several recipes for kale used with soups and stir fries. 

But the recipe below is about as easy and good as you can get and only requires three ingredients.  I’m sharing it with you in hopes that you’ll also discover this fabulous vegetable continues to be listed as one of the Super Foods.  Super Foods are only good if you know what to do with them. 

Roasted Kale with Sea Salt

4 cups firmly-packed kale

1 to 2 Tbsp. extra virgin olive oil (I sometimes use Sesame Oil for a different flavor)

1 tsp. good-quality sea salt (I’ve been using lemon sea salt)

Directions

Preheat oven to 375 degrees F. Wash and trim the kale: Peel off the tough stems by folding the kale leaves in half like a book and stripping the stems off. Toss with extra virgin olive oil. Roast for five minutes. Turn kale over. Roast another 7 to 10 minutes until kale turns brown and becomes paper thin and brittle. Remove from oven and sprinkle with sea salt. Serve immediately.

I’ve seen a few other recipes that add some minced garlic, ground black pepper and toasted sesame seeds.  Everybody’s palate is different so do with it what you like.  But today I bought two sacks of kale and plan on enjoying its wonderful flavor throughout the week. 

If you want to buy local, the Farmers Market is where you want to be.  And if you can’t get there on Saturdays, then try shopping at local food markets such as Argenta Market in North Little Rock, or Terry’s or Hestand’s in the Heights.  All of these locally owned markets do a terrific job of buying from local farmers too.  

Eat healthy, and eat local when you can.  It's really not difficult, just requires changing a few old shopping habits.  

Single Parenting with Cancer takes a Legal Hit

A recently decided custody battle has been getting a lot of attention recently, especially inside the cancer community.

On the losing side: A North Carolina mother with stage 4 breast cancer whose two children, ages 5 and 11, were taken away because of her terminal illness. On the winning side, the healthy father who divorced his wife, Alaina Giordano, after her diagnosis. Several months ago he decided to move to Chicago, and now he wants his kids.  Essentially, the judge said, a healthy dad is better than a sick mom.  

Make no mistake – this divorce was replete with accusations of physical and mental abuse, extra-marital affairs and mental illness.  But it was the father who chose to leave North Carolina to pursue a job in Chicago, and it was the judge cited breast cancer as the deciding factor. Custody agreements, in theory, are based on what's in a child's best interest, but moving the children away from their friends, their schools and their mother at a time when her life expectancy is uncertain is incomprehensible. 

In her ruling, Judge Nancy Gordon cited forensic psychologist Dr. Helen Brantley: "The more contact [the children] have with the non-ill parent, the better they do. Children want a normal childhood, and it is not normal with an ill parent."

This issue isn’t over and will long be debated in the court of law and the court of public opinion.  In the meantime, Alaina has started a blog and well-meaning friends have begun a Facebook page: Alaina Giordano Should Not Lose Her Kids Because She Has Breast Cancer. 

On her blog, Alaina writes this:

I AM NOT CANCER.

I am Alaina. I was diagnosed with cancer in December 2007. I am not cancer.

I am a mother of two remarkable children. I am not cancer.

I am a daughter to loving parents. I am not cancer.

I am a sister to two amazing women. I am not cancer.

I am a friend to so many wonderful people. I am not cancer.

I AM NOT CANCER

I plan on staying on top of this issue.  It’s difficult to imagine that this kind of child custody ruling could become the norm, that we could begin to see laws passed that suggest effective parenting is contingent on being in optimal health. 

Medical update:

Last week I went to see my oncologist Dr. Makhoul for some blood work and my regular checkup – and the news is good. 

First, my vitamin D levels are finally normal and I’ll soon begin the Reclast treatment to increase my bone density levels.  This is good news, especially since I had an accident last Friday with my toe and a big piece of furniture in the den.  I went online to find out what can be done with a broken toe, and most articles said there’s not much you can do.  So, I did nothing, until yesterday.  With pain and swelling moving into my foot, I got worried – this wasn’t getting any better, only worse.  Sure enough, I went to see my neighbor/friend and local podiatrist Dr. Richard Bronfman, and I have a nice clean break across my toe.  Eeeeks – no wonder it hurts.  I’m now wearing a beautiful black boot, my toe wrapped up in gauze and tape.  I need to get my bones back to where they need to be.  They are as frail as paper right now. 

Second, my tumor markers came back negative.  I have long heard the phrase “tumor marker” but had no idea what that meant until last week. This will be a test I’ll have every three months for who knows how long.  Tumor markers are substances that can be found in the body (in my case, the blood) when cancer is present. Tumor markers can be used to identify hormones, proteins or parts of proteins to determine if cancer is present.  My tumor markers should always remain below a 31.  Last week my tumor marker test – 16!  What a fabulous kind of test to see if cancer is trying to stir itself back up in your body.  While there still is no cure, there are some remarkable tests and procedures that continue to amaze me. 

I continue to move along and feel better all the time.  Yes, my resistance is down and I seem to pick up all kinds of infections that used to not be an issue.  Ear infections, a fever virus – you name it, I can pick it up right now.  But I’m not going to let this get me down.  Life’s been fun – an evening cruise down the Arkansas River, a French dinner party where Tim and I were the “celebrity chefs,” floating the Buffalo National River, a day at the horse races, a reunion celebration with Hendrix College friends, a decadent dinner and beautiful evening at P. Allen Smith’s Garden Home, and now regular visits to the Farmer’s Market to keep my 80% plant diet on track.  Life is good and I’m enjoying every day. 

I hope you’re enjoying the spring weather as much as me.  

Damn it! I Hate Cancer!

For me, it seems like cancer has become epidemic.  Or maybe I’m just more sensitive to the stories about each new diagnosis.  I’m not sure.  But it seems like the nasty cancer keeps finding a way to invade the lives of people I love.  

About a month ago, some longtime family friends shared with me that their daughter has been diagnosed with breast cancer – and the really evil stuff, Inflammatory Breast Cancer.  I knew her when she was a little girl.  Today she's a young woman, married with small children, and now she carries the burden of IBC.  Just terrible news.  

Last week, another friend called to give me an update on his sister, also battling Inflammatory Cancer.  Her battle has been tough, treatment hard to handle, treatment now put on hold, and she’s not doing so well.  

On Saturday, my darling cousin in Texas lost her mother-in-law to colon cancer.  Her mother-in-law lost her own husband just a few short years ago to pancreatic cancer.  It hardly seems fair for my cousin’s husband – to lose both of his parents in only a few short years, both of them taken by the ravages of cancer. 

Yesterday I found out that another longtime friend, who has been in remission for about two years – well, he got the bad news call.  The cancer is back. 

Last night I received a late-night email from another dear friend, a kindred spirit whose sister died many years ago from Inflammatory Breast Cancer.  My friend found a lump, had an appointment with the radiologist, and has now been told she too has breast cancer. 

And just today at UAMS, I ran into one of my cancer soul sisters.  Throughout my own journey, she helped keep my spirits high, served as a gracious role model for how to have cancer with great dignity.  She’s a classy and tough as grizzle woman who has fought the good fight and made it to the other side.  That is, until today. Her breast cancer has returned, even though she went ahead with the double mastectomy.  WHAT?  Breast cancer without breasts?  Unbelievable.  What will it take to stop this monster from continuing this ravage on our bodies?

Tonight I’m mad as hell, and yes, I'm scared too.  I hate cancer and it feels like it’s closing in! 

HELP - Somebody!  Make it go away! 

Did I mention that I'm scared?  

Encouragement from Survivors & Research

 Breast cancer, no matter the circumstances, is terrible.  Make no mistake – all cancers are bad.  It’s a disease that once diagnosed haunts the body and stalks the mind forever.  There are no good cancers.  Period.

Having said that, there are some diagnosed with breast cancer who are able to battle the disease without having a to surgically remove the breast.  And then there are others, like me, where a mastectomy is mandatory, not an option.  The issue can then become a decision about prevention --  “Do I remove the one breast, or both?”   Called a prophylactic or risk-reducing mastectomy, it’s a procedure to eliminate the chance of developing cancer in a second breast,.  It’s often recommended when a woman exhibits risk factors for the cancer to move to the other breast - age, family history, and the presence of invasive or high-risk cancer cells

The benefits of a preventive mastectomy are simple – removing the second breast significantly reduces the chance of developing cancer in the other breast.  Real simple.  I

The risks associated with removing both breasts are twofold:  (1) The normal risks associated with any kind of surgery, and (2) Because a preventive mastectomy is irreversible, the psychological effects on a woman’s body image of loss of normal breast function must be considered.  

And let me tell you, the psychological effects can be real. 

During my own breast cancer battle, it would be almost ten days before the mastectomy surgery that I would have my first real emotional meltdown.  From February through June, I surprised myself by staying emotionally stable, my head in the game of cancer treatment.  However, as the July date for the mastectomy approached, I became terrified, worried about so drastically altering my body.  While I’d never had a love affair with my breasts, they were mine and I really didn’t want to lose them.  It was a tough time of great anxiety, and sometimes a river of tears.  However, though the help of survivor friends and a little therapy, the logical mind would take over, and I successfully made the mental adjustment a few days before surgery.   

At Friday’s annual meeting of the American Society of Breast Surgeons in Washington, D.C., there was good news for those of us who've been faced with the "one or two" mastectomy decision.  

Researchers at the Mayo Clinic in Rochester, Minn., questioned hundreds of women who sacrificed a healthy breast in the hope of avoiding another cancer. Twenty years after their surgery, 97 percent said they would make the same decision again.  Details about the research can be found by clicking here.

Throughout this cancer journey, I’ve been blessed by amazing women who have openly shared with me their pain and fears, and their stories of conquering the beast.  These champion women remained by my side to calm my fears and hug my soul. Their stories gave me the hope I needed to fight strong, a much better strategy than traveling the journey alone. 

And now we have encouraging news from almost 300 women who 20-years ago were faced with some of these same tough decisions – one breast or two?  It’s nice to know that looking back, they would do it all over again. 

Thank goodness for survivors who share their stories, and for research that calms our hearts.  I am thankful.