Thursday, November 26, 2009

Giving thanks



It's not what we have in our life, but who we have in our life that counts."

j.m. laurence


This Thanksgiving, as our family counts our blessings, we have so much for which to be thankful: For the strength to fight cancer and tolerate the treatment...for the courage to face this daunting challenge....for the hope and optimism to beat this disease...for the skill and knowledge of the doctors and the compassion of nurses. But above all, our gratitude runs deepest for all of the love and support we have received from our friends, family, co-workers, neighbors and many others, including people we've never met before.


Over the past six months, these caring people have provided Karen with a daily infusion that's far more powerful than any of the drugs that have flowed from her IV bag during chemotherapy. Their generous infusion of support counteracts the fear of cancer and the sick fog of chemotherapy. Their care and concern is a kind of anti-toxin -- a remedy that nurtures Karen's spirit and has sustained all of us during these past months. Indeed, the support of those who love you is a cure itself.

A year from now, when we think back to this time, our memories won't be of the diagnosis or the treatment, but rather, it will be of the many simple acts of kindness, friendship and love that have been repeated every day along this "journey", including:

  • Soft blankets and a hand-woven prayer shawl -- gifts from Karen's friends -- have provided warmth and comfort during long chemo sessions.

  • Over three dozen family, friends, colleagues and neighbors have provided gift cards and meals -- from homemade soups to roast chicken with mashed potatoes. From slow-cooked ribs to Turkey Tetrazzini. From chicken Marsala to Cuban chicken. From Mexican lasagna to meatballs made from a friend's secret family recipe. Some meals arrive with bottles of wine and even dog biscuits for Caramel. Every dish was special -- not only for its unique flavors and the talent of the cooks, but because of the time, energy, care and thoughtfulness that went into preparing and delivering them.

  • Friends and family have bought Karen a myriad of hats and scarves -- colorful, fun, practical, whimsical and too many to count. They allow Karen to make a fashion statement every day and keep her bare head warm as the weather gets colder.

  • Other friends have sent over their "cleaning lady" to help with household chores -- a generous gesture and a big help for me since my job forced me to travel almost every week.

  • With 16 rounds of chemo -- all in Philadelphia -- we were fortunate to have a reliable group of friends who drove Karen to many of her treatments and spent nearly a day at the Penn breast cancer center with Karen as she met with her doctor and received her infusion.

  • Care packages filled with lotions and other soothing items, books, magazines and CDs to help make each day a little easier.

  • And a steady stream of flowers, phone calls, emails and cards -- enough to fill a shopping bag -- continue to arrive with words of encouragement, support and offers of prayers.

These are simple acts that have had a powerful impact on us -- especially Karen.

This past year has been a long and often difficult one. But it has been made easier because of all that our friends and family have shared with us. It's difficult to imagine getting through this without such incredible support. I recently came across a fitting Turkish proverb, "No road is long with good company." Battling cancer is often a long road, but with good company -- friends, family, co-workers and neighbors -- that road is made shorter and less bumpy.

Thank you!



Thursday, November 19, 2009


Strength, courage and wisdom
And it's been inside me all along
Strength, courage and wisdom
Inside of me
India.Arie

Twenty-two weeks and 16 rounds of chemotherapy later, Karen is still strong. Sure, her body has been ravaged and her energy drained by the cumulative effects of nearly six months of a difficult regimen of chemicals, but today, as the final drops of Taxol dripped from her IV bag, she took the first steps toward getting "on the other side" of this journey. The same strength, courage and wisdom that she drew upon for her first chemo treatment on July 9th was still inside of her when she finished her final round of chemo today.

Looking at the two photos above -- one taken on her first day of treatment and the other on her last -- the toll of the experience is apparent. On the outside, chemo has stripped her of her hair, eyebrows and eyelashes. Her skin is milky-white and her toenails are falling off. But her smile remains, always, as does her buoyant optimism. On the inside and on the outside, she's been fighting cancer every day, never losing hope and inspiring all of us along the way.

Karen could have opted for a less intensive and shorter treatment protocol. But faced with a diagnosis of the more aggressive triple negative cancer that has a higher rate of recurrence, she never thought twice about participating in a clinical trial that required 16 cycles of dose dense drugs, including the trial drug, Avastin. After all, she didn't want to ever have to go through this again if there was any chance that she could knock out cancer for good now. Bravely, she said yes to the trial. In the end, she endured that long trial only to learn after the 10th cycle that she was in the 20% of the trial participants that received a placebo instead of Avastin, the drug added specifically for the trial. Disappointing? Greatly. But she can rest easier knowing that she received more chemo than she might have otherwise received with a standard treatment protocol.

Today was an important milestone in the cancer journey. Yet, in many ways, the last treatment was strangely anti-climatic. Oddly, there were no cheers or high-fives in the "infusion room." Of course, we were both glad to end this chapter. Karen is anxious to begin the process of recovery and healing. To grow hair. To rediscover the taste of food. To sleep well. To simply feel good. But first there is radiation treatment -- perhaps as many as four to six weeks of daily radiation. While it doesn't loom as threatening and scary as the the chemotherapy, it represents another phase in the treatment course. And so, the journey continues.

Thursday, October 22, 2009

And how was your morning?

I have been travelling a lot these past few weeks for work and keeping up with what's happening at home and checking in is often done via email. I got this blog-worthy email response from Karen when I checked in with her this morning from Austin, Texas:

Woke up at 4 AM after three hours of sleep.

Found stink bug under covers with me. Freaked out.

Got up. Changed sheets. Did laundry.

Unloaded dishwasher.

Scanned Internet for news clips on my client. Sent client emails at 5:30 am.

Showered and dressed. Woke exhausted Phillies fan. Fed him healthy breakfast. Made myself eggs and English muffin. Did dishes.

Walked dog. Kissed child goodbye.

Got on 45 min conf call with client at 7:30 am. Left to catch train to Philadelphia for chemo appointment at 8:20 AM.

Bought coffee and Tastykake donuts. Sat squishy fat ass down on train at 9:00 AM.

Enjoying foliage of Lancaster County as I decompress and regret eating all six donuts. How's your morning? xo

Karen

Sunday, October 18, 2009

Walking on Sunshine


There are heroes, and then there are superheroes. Ordinary people doing extraordinary things.

People like the six women from the Neiman Group -- Amy, Cate, Whitney, Alex, Kelly and Karen -- who joined thousands of others this weekend in the Susan Komen 3-Day, 60 mile Walk for the Cure in Philadelphia.

Despite a Nor'easter that swirled around them and prompted the organizers to cancel Friday and Saturday's walk segments, the Neiman Team -- "For Our Girls" -- kept their promise. They stuck to their plan and their commitment to a greater cause. With the official walking course closed, they took to the shelter of the King of Prussia Mall and walked 20 miles around the mall. On Saturday, with the official walk still postponed, they braved the unseasonably cold temperatures and steady rain and walked another 20 miles. The weather would not stop this team.

Karen joined the team on Sunday, originally hoping to participate in the opening ceremony and walk just a few miles to show her support. But those of us who know Karen also know that she never does anything part way. When she's in, she's all in. And so just three days after her chemo treatment, and without the juice of her wonder drug, Decadron (more on that later), she walked today's entire 15 mile course.

Was it lunacy for Karen to undertake such an ambitious effort with no training and weakened by 11 chemo treatments? Maybe. Her doctor gave her a green light to participate -- but that was when Karen planned to only walk a few miles. Yet she walked -- energized by the honor of participating in a emotional tribute and celebration of cancer survivors -- a group to which she now belonged. She walked -- lifted by the support of her friends and propelled by an inner strength that only she could understand. Though the weather was gloomy, as they walked across the finish line, Karen and the Neiman Team were walking on sunshine.

Many tears flowed as the walkers raised their sneakers to honor the cancer surviors. I can't adequately capture the emotions these women felt as they walked the course or participated in the emotional closing ceremonies. For Karen, the event, was incredibly moving. It was a moment she had not yet experienced in her "journey" and may very well prove to be a transformative one.

To Amy, Cate, Alex, Kelly, Whitney and Karen -- and to all those who participated in the 3-Day Walk or made a donation (the Neiman Team raised over $15,000; the Philadelphia walk raised over $8 million), congratulations on this extraordinary achievement!

And to those who read the blog, please take a moment to congratulate Karen and the Neiman Team by leaving a comment on this blog posting. I am sure that they would appreciate your support and encouragement.

For more photos of the walk and the event, go to: www.flickr.com/photos/forourgirls

Sunday, October 11, 2009

This One's For the Girls!

The invitation read: Beef, Beer and Boobs! -- an invite sure to get the attention of any guy. But this wasn't about the guys (it never is). This one's for the girls!

Once again, Karen's friends and her colleagues at work have turned out in force to show their support for her and the fight against breast cancer. Last week, her colleagues (including the guys, of course) from the Neiman Group held a benefit to raise money for five women in the office who will participate in this weekend's Susan G. Komen 3-Day Walk for the Cure in Philadelphia.

The well-attended event brought together many of Karen's friends, co-workers, clients, fellow breast cancer survivors and even a guest celebrity, Dr. Andy Baldwin, the star of the 2007 television series, Bachelor: An Officer and a Gentleman. Baldwin is raising awareness for his own cause -- childhood obesity -- with a 420-mile bike ride across Pennsylvania.

Thanks to the generosity of so many wonderful people, the team raised over $15,000 on Wednesday evening. The team from Neiman Group -- Alex Wagner, Amy Muntz, Cate Olyer, Kelly LaMark and Whitney Shaeffer -- head into this weekend's 60-mile walk energized by the success of the fundraiser and eager to honor and celebrate the courage and determination of the thousands of women battling breast cancer, including many like Karen who they know personally. They walk for those who face cancer today, but also "for our girls" in the future, so they might not face this ugly disease.

Sunday, September 27, 2009

The Burden to Be Strong

With last Thursday's treatment, Karen has reached the half way point in her chemotherapy. There was no singing and dancing to celebrate the metaphoric "light at the end of the tunnel." Instead, she approached it just like the week before, and the week before that: get up, get on with it and move forward.

That's what you do when you have cancer. Is there a choice, really?

Karen's hope hasn't faded, but the facade of strength has begun to show cracks. Behind her ever-present smile that seems to buoy others more than herself is a flu-like fatigue that no amount of rest seems to ease.

New in town for the chemo production playing out at home is: "The Change of Life". Hot flashes have thrown Karen's internal thermostat off kilter. And weepy emotions flow without warning. It's all new here..for all of us. Yet still, there's: get up, get on with it and move forward.

We've heard it before, "That which does not destroy us makes us stronger." Some might say it's a challenge put before cancer patients as they go through treatment. The pressure to be strong is very real.

I've come to realize that Karen carries a burden to be strong, because she must, but also because we want her to be. We expect cancer patients to battle cancer as brave fighters. These words -- and I've used them repeatedly in my blog, helping to fuel this expectation -- convey the image of a strong warrior. But Karen is not a warrior. Yes, she is strong -- in more ways than one -- but when it comes to cancer, she has no choice but to be strong. As she puts it, "you do what you have to do."

There are days when falling into self-pity and despair would be much easier than fighting. But in the six months since her diagnosis, I'm not sure I could count even one day when she retreated into self-pity. This is tough work...to stay upbeat as your body and mind tries to bring you down.

Soon, there will seven treatments left, then six, then five....and Karen will move beyond all of this. Perhaps stronger, but relieved of the burden to constantly be strong.

Tuesday, September 15, 2009

Race for the Cure

This past weekend, the Walsh family made a strong showing in support of breast cancer awareness and research -- participating in two Susan G. Komen Race for the Cure events in Scranton, Pa. and New York City. On Saturday, over 20 family members in Scranton ran and walked the 5k course as part of a team organized by our niece, Sarah. I joined my brother, Chris, and his family and my brother, Will -- along with over 25,000 other supporters -- in a race through Central Park on a beautiful Sunday morning.

These were great events that brought my family together to support an important cause and to honor Karen -- and thousands of others -- fighting breast cancer. A huge thank you to Chris who raised a very impressive $5000 and to Sarah who recruited family members and friends in Scranton.

For me, the event marked my first race. Not my very first charity race...my first race ever (unless you count when I ran track in middle school). I can't think of a better way or place to have made my entrance. The scene in NYC was overwhelming as a sea of runners and walkers of every age, gender and race came together to show their support. Given our family's personal experience these past several months, it was impossible not to be moved by the commitment, concern, hope and encouragement of so many wonderful people. They ran or walked in memory or celebration of their own friends and family, but I also realized that those 25,000+ people were running for our family...for Karen. It's powerful when you stop to realize that these people run for someone you love.


Thursday, September 3, 2009

"The worst is over...but your tongue may turn black"

I've fallen behind on my blogging, but not because there's nothing happening here. To borrow Ted Kennedy's line replayed so many times over the past few weeks, "the work goes on, the cause endures, the hope still lives..." It's a fitting battle cry for Karen.

Her treatments have taken a toll on her as the chemo toxins build up in her body. She has become increasingly weary as the chemo wipes out her red blood cells. Migraines grip her head like a vice. Her infusion port bulges like a transmitter just under her chest. Mouth sores line her lips. And the waves of nausea have grown stronger and last longer.

Here's the crazy thing about all of this: none of Karen's pain or exhaustion is from the cancer -- the evil, scary cancer that we feared more than anything. Not a single moment of pain was ever from the cancer. It's hard to make sense of it, but all the pain and discomfort comes from that which is meant to cure her. Karen is caught in the crosshairs of a battle between her doctors and cancer. The chemo drugs are the weapons; her body a battlefield.

The doctors always presume that at least some rogue cancer cells may break loose from the original tumor and find their way into the blood stream, travel to somewhere else in the body and then divide and conquer. So, chemotherapy becomes, in some ways, a kind of scorched-earth defense -- kill everything that grows and divides -- even the normal, healthy cells. The result: you have to become sicker to get better.

Thursday marked another milestone in Karen's treatment. She finished four cycles of the powerful Adriamycin and Cytoxan (AC) drugs and has moved onto the chemo drug Taxol.

"The worst is over," say the doctors.

It's hard to find comfort in these words knowing that Karen still has 11 more Taxol treatments ahead of her. The "AC" may be one of the toughest regimens to tolerate, especially with infusions every two weeks. But Taxol has its own set of destructive side effects: pain in the joints and muscles, numbness and tingling in the hands and feet, skin and nail changes, mouth sores, mood changes (oh, joy!), and occasionally, the tongue may turn black. She can also expect to lose the last few hairs on her body -- her eyelashes and eyebrows. But remember, the worst is over.

Still, her spirit remains positive and her resolve is strong -- bolstered in large part by the support of many amazing friends, neighbors, family and colleagues.

It has been 22 weeks since Karen first found that lump and nine weeks of chemo treatments have been crossed off the calendar. Eleven more treatments in as many weeks stand between her and the end of chemotherapy. Radiation therapy will add many more weeks. And then it will be a new year. Surely, a year of recovery, healing and renewal.

Tuesday, August 25, 2009

Walk in Jen's Shoes

Walk a mile in Jen's shoes. Better yet, walk 60 miles in Jen's shoes.

Last weekend, Karen's sister-in-law, Jen, joined hundreds of other women and men in the Twin Cities for the Susan G. Komen 3-Day Breast Cancer Walk. She walked in honor of Karen and Dick, for Nancy and Oma, and for so many friends, mothers, fathers, grandparents and children whose lives have been touched by cancer. The event raised over $6 million for breast cancer research and Jen raised an impressive $5000!

But more important than the money she raised is the personal commitment that Jen made in training for this weekend and walking the 60 grueling miles over three days -- an effort at least as challenging as running a marathon and just as exhausting.

For Jen, the walk was a humbling experience. Despite blisters and aching muscles, Jen and her team endured the pain, knowing that those who battle cancer experience much greater pain and discomfort.

Without being there among the hundreds of walkers and supporters, it's difficult to convey the incredible emotion and energy driving these selfless individuals. They honor us all. And for that, we are grateful.

I applaud Jen's dedication, hard work, compassion and great physical exertion. Awesome job, Jen!

Saturday, August 22, 2009

A Father and Daughter's Shared Journey

This past week, while Karen underwent her fourth chemo treatment in Philadelphia, over 1100 miles away in Woodbury, Minnesota, her Dad sat in a similar blue recliner as toxic chemo drugs ran through an IV line into his veins and raced through his bloodstream in search of hyperactive cancer cells.

While Karen is battling breast cancer, her father, Dick, is battling prostate cancer.

It's a dark reality: a father and daughter fighting their own cancers and enduring lengthy chemo treatments at the same time. Separated by five states, they find themselves on similar paths hoping to -- no, determined to -- beat cancer and move on with their lives.

Sharing this disease can give way to a multitude of empathetic emotions between father and daughter. Yet, it's also a strange, almost awkward, bond to share. Is it somehow easier for Dick, who’s left with tiny wisps of a white crew cut after months of Taxotere, to relate to the trauma that Karen is facing with her own hair loss? I know that it's difficult for Karen to be so far away from her dad at this time.

They speak little of their fate or their fears, or the details of their treatments. Instead, they share useful tips, like Dairy Queen strawberry milkshakes, Dick's near-daily elixir for taste buds that have all but lost their receptors for flavor -- unless you consider metal a flavor, and Karen’s craving for scrambled eggs and spinach to ward off nausea.

Dick fights his battle with a “play-the-cards-you're-dealt” acceptance and a determination to get out on the golf course as often as possible. But they haven't been easy cards to play. Only retired a few years, he's already endured quintuple heart bypass surgery, radiation for his prostate cancer and now a long chemotherapy regimen. This isn't exactly how Hallmark or Charles Schwab portray the golden years, but he never complains. Dick still finds great joy in his Saturday morning golf games, his weekly cardiac workouts and a good book curled up with his dog, Bella.

Sadly, cancer is no stranger to Karen's family. Her mother, Kathy, valiantly fought colon cancer, losing her battle after four difficult years in which she tried every drug imaginable in an effort to have more time with her grandchildren. Karen's stepmother, Nancy, bravely fought cancer as a new mother, beating Hodgkin’s Disease some 25 years ago when the anti-nausea drugs were not anywhere near as potent as they are now. And Karen's cousin, Larry, took on colon cancer with his trademark guts and wicked sense of humor right until the end.

One thing we have learned from Karen’s loved ones is that there is great strength and faith in this family and they have all shown Karen how to fight cancer with courage, dignity and grace.

Monday, August 17, 2009

I am not my hair!

Karen has decided to bare it all...her bald head that is. These days, as the temperature has broken 90 degrees for several days in a row, she has tossed aside her caps, scarves and hats and stepped out into the world -- or at least Harrisburg -- as bald as a full moon.

Clearly, she's feeling more comfortable with her new look. She has the good looks, not to mention a nicely shaped skull, to pull it off. She strides down the street like some sort of exclamation point (an upside down one, perhaps) that proclaims her new-found self-confidence. And she's having fun with it too.  Sitting hairless in a colorful summer dress among a large crowd of 9th grade students and parents at Jack's high school orientation today, she laughed, "I look like you stole me from a department store."

Her friends shout out, "You go girl!"  I agree.  

Yes, she's feeling bold, but her acceptance of her transformed beauty hasn't quite caught up with her boldness. Because, despite how easily she appears to throw caution to the wind, she admits it's still quite jarring when she catches her reflection in a window or stands before the bathroom mirror in the morning. And no matter how good she may feel about herself or how bold she may be, the hair loss remains a constant reminder of the journey she is on and the toll of cancer.

I am not my hair
I am not this skin
I am not your expectations, no, no
I am not my hair
I am not this skin
I am a soul that lives within
(I am not my hair...India.Arie)

Monday, August 10, 2009

Can duct tape fix cancer?

My idea of doing repairs around the house is using duct tape to hold together whatever is broken or loose. In fact, for Father's Day, Karen and Jack bought me a wooden sign that reads, "Mr. Fix-It. Dad can fix anything with duct tape." And if duct tape doesn't work, well, I simply ignore it.

The fact is, I shouldn't even own a toolbox. But I do... and it's full of a mess of wrenches, drill bits, pliers, nuts, bolts and screwdrivers which I don't use, not to mention dozens of other tools for which I have no idea their purpose. But a guy needs a toolbox.

When Karen announced that her brother, Dave, and sister, Anne, from Minnesota would be visiting in a show of support, I didn't realize that I was getting Bob Villa from This Old House for a week. Karen, knowing my lack of handyman talent, had actually warned Dave in advance that she had a "honey-do" list that had long been ignored by her "honey-don't." He came prepared with his own work gloves and work boots. This guy from Minnesota is serious. You betcha.

When he arrived, I sheepishly showed Dave my toolbox and quickly departed for a short business trip to Long Island, comfortable that Karen would be in good hands and that he would be busy with an ambitious project list. And by the end of the week, Bob, er, Dave, had:
  • silenced the pipes that rattled whenever we shut off a faucet (who would have thought that a simple 10 cent bracket could fix that so easily...jeez!)
  • fixed the pantry door handle that would fall out whenever we pulled on it (had been this way for, let's see, six months or more).
  • trimmed the dead tree branches, filling 17 garbage bags in the process,
  • unclogged the basement drain pipe so the two dehumidifiers -- that run around the clock to stop mold from growing on our basement walls -- had somewhere to drain (hmm...does mold cause cancer?),
  • replaced two porch light fixtures (whoa!... electrical work is way outside my comfort zone),
  • dug out and replaced a lamp post and fixture (taught Jack how to mix concrete),
  • cleaned out my tool box (I still don't know what's in there),
  • called the exterminator who rid us of cicada killers, don't ask, (to the tune of $353) and, oh by the way, found termites in the process (to the tune of $1100)...gee, thanks Dave!
I must say that I was impressed and glad to have someone who knows how to change a light fixture without getting electrocuted in the process (I didn't realize that you need to switch off the circuit breaker first...boy, that would have been sad).

So, we had a great week. Karen is overjoyed with her new porch lights (it's the little things in life that really matter). As for me, for now, I can leave the duct tape for the soles of my feet (seriously, I tape the dry, cracked, bleeding soles of my feet...the duct tape works wonders).

Oh...Anne! Not to be forgotten. For she brought her energy, cooking talents and high school prep tutoring to our family last week. We enjoyed her rich and creamy risotto, wonderful sweet potatoes and special cocktails. Thankfully, she also helped kick start Jack's summer homework assignments, motivating him to get moving on long overdue school work.

In the end, it wasn't the risotto or the porch lights that mattered the most. Simply having family here to visit (Karen's stepfather, Phil, also made a week long visit in July), is what sustains all of us during this difficult battle. Thanks!

Saturday, August 8, 2009

"Pain is temporary; quitting is forever." A personal note from Lance Armstrong

On Friday, Karen received a package from the Livestrong Foundation. At first, she thought it was like several other care packages she had received from cancer support organizations. But then she was surprised to open it and find a personal, hand-written note from Lance Armstrong himself.

We don't know Lance Armstrong personally. But my college roomate, Rob Lettieri, and his family, are personal friends of Lance. When they learned that Karen was battling cancer they called and asked Lance if he would send Karen a note of support. The note reads:


Karen,

Recently I spoke with Bob Lettieri and he indicated that you are in a fight with cancer.


Please do not give up as you can beat this.

I am enclosing a few items from the Lance Armstrong Foundation to help you in that regard. Please let me know as to how I or the foundation may be of assistance to you. "Pain is temporary; quitting is forever."

Lance Armstrong



Just back from the Tour de France and jotting a note off to Karen. Pretty cool.

Friday, August 7, 2009

"Just do it...then do it again!"

The marketeers at Nike have decided that "Just Do It" isn't enough anymore. Now we have to "Just do it...then do it again." For Karen and her chemo treatments, it's again...and again...and again...for a total of 16 treatments over 5 1/2 months. Yesterday marked only treatment #3 of the potent AC (adriamycin and cytoxan) chemo cocktail, with a possible splash of Avastin (that is, if she's actually getting Avastin and not the placebo). She has one more AC treatment on August 20th, before starting with another chemo drug, Taxol, for 12 weeks.

So far, she's tolerated the AC better than expected. And believe it or not, she's still smiling...and maintaining a busy schedule between working and gladly welcoming a steady stream of her family members from Minnesota (more on that later).

Because the chemo drugs have a cumulative effect, the toxins are building up in her body, which means she's almost certain to experience greater fatigue and face the onset of new side effects. During the first couple weeks of treatment we anxiously and nervously maintained a 24 hour side effect watch. No more. Some side effects are now more predictable: mouth sores, waves of nausea, fatigue. We remain thankful for every good day Karen has and for the strength to get through the difficult days.

After treatment #2, Karen faced the loss of her hair head on (pun intended). And for the past two weeks the remaining tiny splinters of hair that held on have all but fallen loose too. Though she's found comfort in a colorful variety of hats and scarves ("The Sandra" wig still sits atop a styrofoam head), she has also boldly left the house topless (on her head, that is). My point is this, the "journey" continues on a path of hairpin turns and steep hills, but we're still moving forward and the wheels haven't come off....yet!

Saturday, July 25, 2009

It's all fun and games until someone loses an eye...or their hair.



They say time takes its toll on a body,
makes a young girl's brown hair turn gray.
But honey, I don't care
I ain't in love with your hair
And if it all fell out
Well, I'd love you anyway.
Randy Travis (Forever and Ever)

OK, the "Hair Retrospective" was funny while it lasted. But not funny enough to get through this.

There was no way to help prepare Karen for losing her hair to chemotherapy. Seriously, what does a man understand about the relationship between a woman and her hair? Despite the many hair transformations she's cried over throughout the years, this would be different. Or so I thought.


Signaled a few days in advance by a head-tingling sensation, she started shedding her hair last weekend. It was just as predicted: 10 days into her treatment. First, it was more than the usual strands of hair around the bathroom sink. But by yesterday, a day after her second chemo treatment, strands of hair became fistfuls of hair. And this morning, it just got worse. Karen was literally pulling her hair out. A small wastebasket quickly filled with hair. It was gut-wrenching to witness.


It takes a brave woman to surrender her hair to a set of clippers. Resigned to the reality that the shedding would only get worse, Karen agreed to let me cut her hair short and use the clippers to shave off the rest. Let's just say that I probably don't have any hope for a career in hairstyling (not that I planned one), but using tender care, I clipped her hair down to a 1/4 inch buzzcut. She sat there with quiet and calm acceptance as I pushed the clippers over her head creating a wide swath of brown hair that tumbled to a pile at my feet. The chemo will give up even the little bit of hair that's left and it too will find its way to the wastebasket in the days ahead.


The anticipation and dread of this moment has gnawed at Karen -- and me -- for days, perhaps weeks. But today, I was moved by how Karen handled it with such inspiring courage, calmness and grace. There were a few tears at first, but she ended it with her great big smile -- truly, a smile against which no hairstyle can compete. Karen is beautiful, not because of her hair, but simply because she is beautiful. I continue to be in awe of how Karen has fought this fight, and today was no exception.



Monday, July 20, 2009

Eleven Days

Today marks Karen's 11th day of her 133 day chemotherapy regimen. There's nothing magical about 11 days. But when you're fighting cancer, you find reason to celebrate just about anything. And right now, I suppose we could celebrate that Karen is 8% of the way through her chemotherapy. Eleven days closer to the end of chemo. I'm a glass-is-half-empty kind of guy, so the fact that I can see the positive in 11 days when 122 more lie ahead is quite impressive.

The first 11 days have been relatively good ones for Karen. She's had some side effects and a few more reveal themselves every day. And so far she's been able to continue to work a full schedule. Don't get me wrong, this isn't a "kinder, gentler" chemo protocol. It will get harder. She hasn't lost any hair yet, but we've just entered the "10-14 day" period when hair loss is most likely to occur. Maybe the laughs she got from the "Hair Retrospective" will carry her through those difficult several days. Or not.

Eleven days down and 122 more to go. With cancer, you take every good day you can get and enjoy it. And for now, that's exactly what we'll do.

Monday, July 13, 2009

Karen's Hair: A Retrospective

Let me be clear: Karen hates her hair. Or at least that's what it seems when she curses it most mornings in front of the mirror. (Let's also be clear: she doesn't hate it enough to lose it all...and she hasn't lost it yet).

Wielding a blow dryer in one hand and juggling four different brushes in the other, she twirls it, twists it and bends it into shape. No fewer than five styling products stand at the ready for spritzing, pouffing, glossing, shining, straightening and spraying.

The 30 minute ritual is repeated every morning and it's a good idea to steer clear of her during this time -- especially when she's got a hot curling iron in her hand.

For Karen, the road to perfect hair is littered with stylists who have cut her bangs too short, left color on too long (resulting in an interesting magenta hue), didn't cut enough or, God help them, cut too much. From high-end salons in Washington, DC to a "stylist's" salon in his converted kitchen, Karen has gone from the pixie to the page boy and many bobs (hair, not men) in between.

Chae, Ito, Daniel, Roe, Joseph, Ginger, David, Harold, Martine and Joe (to name a few): All but one has been handed their scissors and sent packing like a beauty school drop-out.

One of chemo's most cruel punishments is the loss of hair. For women, it is a devastating blow, feared more than almost any side effect inflicted by the cancer treatment. Karen will be no exception. But so far -- her hair still firmly rooted as she waits for the chemo to ravage her normal healthy cells -- she has managed to keep on her game face. And thankfully, she still has a sense of humor. That's why Karen allowed me to "produce" this "Hair Retrospective" of her many, many hairstyles over the years. As she nears the day that she will bid farewell to her tresses for a while, you are invited to join us in paying tribute to her hairstory.

To view still images only, go to: http://tinyurl.com/m6mp33

To view the video on YouTube, go to: http://www.youtube.com/watch?v=b-BOwB-iZE0


Thursday, July 9, 2009

Drip...drip...drip

What lies behind us and what lies before us are tiny matters compared to what lies within us.

Ralph Waldo Emerson

Karen's first chemo treatment was, well, uneventful. It's been hard to know what to expect, despite the doctors' and nurses' careful review of everything that would happen today. We spent most of our time in pre-treatment consultations with the nurses and waiting for an available treatment room. But the "infusions" finally got underway around 3 pm today and were expected to take about 2.5 hrs.

Adriamycin, a Hawaiian Punch colored drug kicked things off, followed by a drug with a name that screams toxic (Cytoxan). With all you hear about the power of these drugs, you half expect the patient to turn green, double-over from nausea and start losing their hair as soon as the drug reaches the blood stream. But that's not the case, of course. Karen's been loaded up with anti-nausea drugs to combat the nausea and we're hopeful that they work their magic (at least until we make the 2 hr. trip back to Harrisburg). In fact, Karen might have several "good" days until her blood counts hit rock bottom and things get more difficult. Or the side effects could come on more quickly. We'll know soon enough how she reacts.

With the clinical trial Karen is participating in, there's no way to know for sure whether she is getting the clinical trial drug, Avastin, but there's certainly enough toxcicity in the other two chemo drugs to do more than enough damage to her cells -- unfortunately the good cells and the bad ones.




Big Strong Girl

Here we go....game on! Today is Karen's first chemo treatment.

It's three months and one day from the day Karen first discovered a lump in her breast. I'd like to say that the past three months have gone quickly, but when you're waiting in anticipation of a big event -- like the start of chemotherapy -- time seems to move at a slower pace. Three months on this journey and "we've only just begun to fight." Now, more than ever, Karen will need to muster the strength, determination and courage to beat the cancer and endure the onslaught of 20 weeks of toxic chemotherapy. And you know what? Karen is up for the fight.

Just look at her photo above taken this morning before we left for her first treatment. That's a look that says "don't mess with me" (Trust me, I've seen that look before and she means business).

Karen is strong. A bit tired going into this next phase -- but strong and ready to get on with the treatment, kick cancer's ass and get back to normal.

A friend recently sent Karen a set of CDs she created with music she selected to bring her comfort and inspiration. One, called Big Strong Girl, seemed particularly appropriate:
It's not now or never
It's not black & it's not white
anything worth anything
takes more than a few days
and a long, long night

don't push so hard against the world
you can't do it all alone
and if you could, would you really want to?
even though you're a big strong girl,
come on, come on, lay it down
the best made plans are your open hands

rest your head
you've got two pillows to choose from
and a queen size bed
hold out for the the moon
don't expect connection anytime soon
feel the light caress your fingertips
you have just begun
the word has only left your lips
maybe in time, you will find
your arms are wrapped around the sun

Sunday, June 28, 2009

The "Sandra"

Karen and her friend, Sandy, picked up Karen's new wig on Saturday and it looks great! Truth is, you probably wouldn't know it's a wig unless you were really looking carefully, and even then I'm not sure.

In the end, it was the "Sandra" style with the brown and cinnamon color blend that won out over "Miranda" and "Emma", though it's quite possible those styles could sit on her head some day too.

For those who have followed Karen through her many hairstyles over the years, you've certainly seen this one before. I think this hairstyle is a throw-back to the summer of 2007 -- Karen's "bob" phase.

For the next few weeks it will sit perched atop a faceless styrofoam head on the dresser. Waiting.

My Sister's Keeper

Last night, Karen and I went to see "My Sister's Keeper," the story about Kate, a young girl with leukemia ,whose sister was conceived to help save Kate's life.

OK, maybe going to see this movie wasn't such a good idea. Not that it was my idea, anyway. Let's just say that it's not the kind of movie you want to see if you've just been diagnosed with cancer and are about to begin chemotherapy. Within the first couple scenes, and in others later, we watched as Kate got violently sick and threw up blood. There was no hiding from the realities of having cancer and the effects of treatment. The young girl's bald head and lack of eyebrows were an all too vivid reminder of what was to come for Karen. It was a difficult movie to watch, but we stuck it out 'til the end. Yet, it definitely added to the anxiety and fears Karen is experiencing.

It was a good movie with great performances by Abigail Breslin and Sofia Vassilieva. But I'm not sure it will win audiences given its difficult subject and graphic scenes of a young girl battling cancer.

Saturday, June 27, 2009

Roller Coasters

I hate roller coasters. In fact, I hate most amusement rides, but I hate roller coasters in particular. My stomach and roller coasters don't mix well.

Yes, I know that roller coasters are an over-used metaphor for the ups and downs of a person's life. But I can't help but use that metaphor right about now. In these days leading up to the start of Karen's chemo treatment, it's as if our "cancer journey" is making the slow climb up the tracks to the crest of the first drop down the steepest hill. For Karen, that steep hill is her upcoming chemo treatment. The ride to the top is long and slow -- how better to build the anticipation and anxiety. As we climb, we can see the top, but we can't see what lies over the crest of the hill, which adds to the anxiety and uncertainty. But when we reach the top...away we go! In an instant, we're speeding down the hill. Whoosh! Your stomach muscles tighten (OK, mine do) and you brace yourself (OK, I do) as you fly along the tracks. From there you careen around sharp turns and up and down more hills. We can expect a similiar experience in the days ahead. And what about those who are also on board who have their arms raised high in the air? I think they must be the cancer surviors who have been through this before and who raise their arms as if to say "I've beat cancer" and it will be alright! Or perhaps they are all of our friends who have raised their arms high in the air as a sign of their support. Just as I know that I get off a real roller coaster in one piece -- shaken and dazed a bit -- I know that we will get off this roller coaster in one piece. Shaken and dazed, but in one piece.

Tuesday, June 23, 2009

Prêt-à-Porter (Ready to Wear)

I took a short break from blogging. Not because I was tired of blogging, but because there wasn't much new with Karen's treatment. Up until this week, we have been in a sort of a holding pattern as we wait until chemotherapy begins on July 9th. But we have started to use this time to prepare in a few ways:
  • On Monday, Karen had a port implanted in her chest. This will make it oh so easier to infuse her with her chemo cocktail every two weeks. No need to try and find a good vein or poke her with a needle every time she has a treatment. Instead, the port will allow the oncology nurses a direct line right into her chest and right to her jugular vein. The Cytoxan and Adriamycin will get coursing through her blood stream in no time! The procedure to install the port -- though a short one -- still took the better part of a day between prep, procedure and recovery. And her recovery left her in more pain than she had expected. Karen doesn't have any fat on her chest. So without any "padding", the port and line is anything but comfortable.

  • We also did some wig shopping together on Saturday. I've driven by the Wigwam (cute name, huh?) literally hundreds of times in the past 10 years. Never did I think I might find myself inside actually shopping for a wig with my wife. But here I was -- assessing whether the "Emma" or the "Sandra" was the right look for Karen. Or maybe the "Miranda" would be better...more hip and youthful, perhaps. And color? Would brown with cinnamon highlights be flattering or should we stick with blond highlights? The platinum blond wig on the mannequin was an interesting look. I'm sure that would turn some heads. Imagine the fun you can have in a wig salon! Though we settled on one (which one will remain a secret, of course, until it's unveiled), I'm thinking we may pick at least one other...or maybe several more so Karen can have a different look every day. In the end, we had a little fun with our adventure and Karen took one step closer to confronting one of the most difficult side effects of chemotherapy.

Thursday, June 11, 2009

Shock and Awe

Karen's planned chemotherapy regimen may best be described as "shock and awe." I'm not sure any chemo protocol is light fare, but the treatment course prescribed as part of the clinical trial she'll participate in shortly is designed to pound the hell out of any cancer that may be left in Karen's body.

Today we got a chemotherapy tutorial -- a 2+ hour introduction to all-things-chemo. We left more educated and anxious to get this phase of treatment underway. We also left with a sense of dread (or I did) now that we are weeks away from Day 1 of a 22 week -- yes, 22 weeks -- course of treatment. That's 154 days, but who's counting?

The chemotherapy protocol involves three standard chemo drugs (Adriamycin, Cytoxan and Taxol, referred to as AC/T) and a fourth drug (Bevacizumab, aka Avastin) introduced as part of the clinical trial. The purpose of the clinical study is to determine if adding Avastin to standard chemotherapy reduces the risk of the cancer coming back, compared to using standard chemotherapy alone. The study specifically targets patients "who have breast cancer that has been surgically removed but has features that have a significant risk of recurrence". Karen fits this profile because she has "triple negative cancer" which is more aggressive and has a higher rate of recurrence.

The chemo protocol is what they call "dose dense" -- the intervals between each chemo treatment are shorter than with a standard protocol. So, instead of three weeks between each treatment, Karen will get chemo infusions every two weeks. Since the treatments are closer together, the theory is that the cancer has less of a chance to grow. But the higher frequency in treatments make these protocols tougher to endure. (Fortunately, Karen received an "I AM STRONG" T-shirt and bracelet from the American Cancer Society courtesy of a thoughtful client, so I think she's ready to go!).

In an earlier posting I shared some of the common, possible and rare side effects from the drugs. They're all ugly, so I won't bother re-hashing them again. Before we left our appointment today, we were armed with at least 5 or 6 anti-nausea prescriptions. I think you get the point. We also got other tips and instructions on what to look for and what to do when any of the other nasty or serious side effects occur.

In short, the 22 weeks of treatment break down like this:

  • AC plus Avastin (or a placebo) every 2 weeks for 8 weeks. First treatment: 7/9
  • 2 week break
  • Taxol (T) plus Avastin every week for 12 weeks.
And on the 7th day, we rest.

The toughest part of the treatment will be the AC -- the first 8 weeks -- in part because the drugs have a cumulative effect. Our goal: make it to Labor Day! Depending on which "arm" of the trial she is on, she may continue the Avastin drug for another 10 weeks after the Taxol. There's a 20% chance she will receive the placebo instead of Avastin (she won't know that until near the end of the trial).

So...this is probably way more than you wanted to know (not that you asked). Chemo is fascinating, isn't it? If you logged on for more stories about Karen's attempt to squeeze into a new pair a jeans (see "Do I look fat in these jeans?" below), I'm sorry to disappoint you. But since this "journey" would not be nearly as fun without showcasing more of "My Life with Karen" (as opposed to "My Wife with Cancer"), please be sure to return on a day when we're not consumed with this annoyance called cancer.

Tuesday, June 9, 2009

You're so vain...You probably think this blog is about you. Don't you? Don't you? (Carly Simon)

For those of you who tune in to the blog to keep current on Karen's medical reports, as opposed to my deep thoughts and weekly reflections on our journey, hold on -- there is news! Actually, good news...the kind we like.

Dr. Tchou called today to say that she got "clean margins" during last week's surgery (it's about time!). Pathology reports indicate that she got all of the cancer cells from the breast tissue and there was no cancer in the chest wall. So for now, anyway, we bid good-bye and thanks to Dr. Tchou and will start to get to know Dr. Kaplan-Tweed who will guide Karen through her chemotherapy. This Thursday, we go to "Chemo School" (I'm not kidding, that's what they call it) where we'll learn more than we ever wanted to know about chemotherapy (look for the posting titled, "Shock and Awe", due later this week).

Karen also started physical therapy this week to help stretch and rehabilitate her arm which has developed a painful condition called "cording" (a muscle pulled tight like a violin string) -- a side effect of removing some of her lymph nodes. The physical therapy will also help prevent lymphedema -- a much more serious side effect of surgery that causes the arm to swell.

Karen returned to work last week just two days after surgery and is working a full schedule again. This is good in some ways, but tiring and stressful too since she still is recovering from her surgeries and trying to fit in other medical appointments.

Although I may stray to other topics, some about Karen and some that aren't -- I will always be sure to keep you abreast (I really do like how that word works in this context) of Karen's recovery and treatment. For now, it's a bit like the calm before the storm...though I'm not sure you'd share that same view if you spent a week with us.

(my thanks to Karen for her sense of humor...I think)

Monday, June 8, 2009

"Do I look fat in these jeans?"

"Do I look fat in these jeans?", Karen asked as she stood in front of the mirror.

I roll my eyes, sigh (I sigh a lot) and mutter an exasperated "No" and keep walking. (Note: there's only one right answer to this question).

There was a time long ago -- OK, last week -- when this was Karen's most pressing vanity concern. Mind you, she has no reason -- none -- to have angst about whether the Seven for All Mankind jeans somehow add pounds to her thighs. They don't. But she is Karen. Is there a bit of vanity involved here? Sure. Is it a bad thing? No.

Karen will wince at these words on the screen. But she's like many women who worry about whether their jeans make them look thin or fat, the gray in their hair and the glow of their skin. There's nothing wrong with it. Hell, we all -- yes, most of you too -- spend billons of dollars to look good. Karen takes tremendous pride in her appearance. She works on it. And it shows. I appreciate the effort she puts into looking good...in fact, I demand it.

(What? You're waiting for the "wink, wink"?).

It is true. Karen did ask me about her jeans recently. But the question gave me pause and struck me quite differently than the 238 times she's asked me the question before. My thoughts this time -- though not spoken at the time -- were that soon, too soon I feared, her concern over whether her jeans made her look fat would give way to a range of raw emotions she has never shared before. As the chemotherapy begins to take its toll on her body, it will throw her beauty regimen into a tailspin. This sounds harsh, because it is harsh. But she -- and I -- will learn how to deal with it and we will get through it. They'll be tears -- lots of them, and hopefully the ability to laugh. And the fit of those jeans? This I know: we'll look back at that six months from now and have a good laugh.

There's a certain irony between the beauty of a woman and the repulsiveness of cancer. It's hard to understand how the two co-exist. And though chemo may (will) take Karen's hair and her skin may become pale, she won't lose two of her most magnificent attributes: her Julia Roberts' smile or her beautiful brown eyes.

Because I know that the physical transition imposed by chemotherapy will be one of Karen's greatest challenges, I explored the Internet for information on how chemotherapy patients cope with the changes to their appearance. One of the programs I came across is "Look Good...Feel Better." It's a great program aimed at helping cancer survivors cope with an important aspect of their quality of life during cancer treatment -- their appearance. The program -- staffed by volunteers -- has helped thousands of women look and feel beautiful. It has given women confidence, boosted their self-esteem and helped them find hope and courage when they need it the most. Whether Karen participates in this program or something like it, I know that once she gets over the initial shock of the changes, she'll discover how to be...well, how to be Karen.

More than the program itself, I was attracted to the "Look Good...Feel Good" ad campaign. I included one of the ads at the top of this posting. But I was also inspired by the ad....inspired to dig through some old photographs of Karen to give her a role in the campaign too. I think the photo speaks for itself!

Thursday, June 4, 2009

Drive-thru Surgery

I'm not sure why people keep demanding that health care needs to become more efficient. If Karen's surgery on Wednesday was any indication, Penn has got the efficiency thing figured out. This was as close as it comes to drive-thru surgery. Karen was swiftly whisked through the process: prep at 6:15 am...surgery at 7:30 am, out to recovery at 8:30 am and headed home to Harrisburg by 10:30 am (the early hour left no time for the beauty mask that preceded the last surgery) In fact, the four-hour round trip from Harrisburg was as long as the hospital visit itself. But we're not complaining, the care was still first-rate. From Artis the funny and irreverent receptionist who greeted us when we arrived to Karen's surgeon, Dr. Tchou. Though quick and efficient, we were happy to get back home.

Though Karen wouldn't want me to characterize the "re-excision" as uneventful....thankfully, it was (no scary side effects like her last visit). But having someone chip away at your breast tissue and chest muscle (just enough so that Dr. Tchou can prove that the cancer has not spread to the chest wall), is no fun. A re-excision is a procedure to re-open the lumpectomy incision to remove more breast tissue. If you've been reading this blog, you might know that the first surgery failed to get "clean margins" around the cancer. In other words, there were some cancer cells left behind (they're hard to find). So, Dr. Tchou went back for more. We now wait until next week to get the pathology report to confirm that the breast tissue -- and the chest wall -- are free of cancer. That doesn't necessarily mean that Karen is "cancer free". Oh, if only surgery could do the job. People ask why, if the surgery removes the cancer, why Karen needs chemotherapy. If just one cancer cell travelled outside her breast tissue and made its way to some other place in Karen's body, it could quickly divide and grow. So, chemo is like insurance...just in case there's still some cancer lurking elsewhere.

Wednesday, June 3, 2009

Kick Cancer's Ass

Karen's sister-in-law, Jen Huart, is participating in the Breast Cancer 3-Day walk in honor of Karen and other family and friends who have battled cancer. The event, held in various cities across the country on different dates, is a 60-mile walk over the course of three days with proceeds benefiting the Susan G. Komen for the Cure. This is Jen's second time participating in this event, which requires significant personal commitment, determination and endurance to complete. Thanks, Jen!

If you'd like to support Jen in her walk and help kick cancer's ass, you can visit Jen's personal page on the 3-Day website.

Thursday, May 28, 2009

Is this what cancer looks like?


Just a few weeks ago, Karen felt great. She had just returned from a much needed spring break vacation with Jack in California. They buzzed around Hollywood, Santa Monica, Malibu and Beverly Hills with no particular agenda except having fun. The trip left her in high gear -- her only gear -- and good spirits.


But cancer is an insidious disease. It lies in wait; growing slowly and quietly until one day, unexpectedly, it springs forth. Then it's here. It's for real. Wait, your body is telling you that you should feel good, so how could you be sick? Sure, yesterday you were great. Today, you have CANCER. And it's inside you -- doing what cancer does: grow. Karen's cancer, the doctor suggested, may have been growing inside her for three years. Though she has mammograms every year, she was among the 10% of patients whose breast cancer is not detected on a mammogram.


Right up to the day of surgery, she felt great (in fact, except for the baseball under her arm she's doing pretty well). Look at her photo on this posting taken just days before surgery (c'mon, doesn't she look like Julia Roberts?...Look at that smile...it's just like Julia's). She looks wonderful (OK...beautiful)...and healthy, right? Is this what cancer looks like? No. Cancer is ugly. And when Karen loses her hair and she's feeling crummy from too much chemo? No, that's not what cancer looks like either. Cancer isn't what you look like on your best day or your worst day. On the days when Karen is sick, we'll know that's Karen fighting cancer, not cancer fighting her.






Tuesday, May 26, 2009

And away go troubles down the drain...

There has always been a rule in our marriage. This rule -- Karen's rule, of course, is that talking about one's "plumbing", is strictly off limits. But what about plumbing that occurs above the waist -- is that fair game? In this case, yes.

Thanks to an over-achieving lymphatic system, Karen has had a build-up of fluid under her armpit causing it to swell to the size of a baseball. This has been a painful, though not a totally unexpected development. The doctor warned us that she would need to have the fluid -- lymphatic fluid -- drained a few times. But in just a week's time, she has had it drained five times. The procedure involves plunging a long needle into the incision and pulling out the fluid. The first time Karen was lucky to have her surgeon, Dr. Tchou, perform the procedure. But only a day later when it filled back up again, she was less fortunate and found herself in the hands of an incompetent ER doctor during the Memorial Day weekend.

As we sat in the ER waiting (and waiting, and waiting) I wondered how often we might find ourselves here in the coming months. I resigned myself to the fact that this would become a familiar place and I should get used to it. Everyone has their own ER horror stories and based on our first experience in quite some time, my fears were beginning to be confirmed. Short staffed and with few available beds, Karen laid for a couple hours in 14E, not in a room or even an area with a curtain...nope, on a gurney pushed up against the wall in the hallway. Take a number, lady! The doctor provided even less confidence. Unfamiliar with this type of recovery complication, he first tried to remove the fluid with a syringe. Finding this inadequate, he then applied the weight of his whole body onto the mass of fluid until it squirted across the room. Yes, there was some temporary relief, but it was clear he had probably done more harm than good and Karen quickly fled the ER.


The fluid continues to build up painfully under her arm and, as a result, Karen's doctor has directed her to make the 2 hr. trip by train to Penn to have it drained. We hope that the fluid is soon absorbed by her body and that this too shall this pass. In the meantime, she'll continue to need some Roto-Rooter treatment..."and away go troubles down the drain."

Friday, May 22, 2009

Cancer, Look Out!

I am tired. I am not witty. I think I have chemo brain -- except it is not the kind you get from taking chemo (a potential side effect that causes some patients to have a mental fog). No, in my case, it's the kind you get from spending 2.5 hrs. talking with an oncologist about chemotherapy. It's a lot to digest....duration, cycles, types of chemo, side effects, and on and on.

Yesterday, we had our first meeting with Karen's medical oncologist, Dr. Kaplan-Tweed (the latest member of Karen's medical team). She's a terrific doctor. The kind who studies your case and history before she walks into the room, listens (imagine that?), and is willing to spend whatever time it takes to answer questions and make you comfortable (as comfortable as one gets with the topic of chemotherapy). And it doesn't hurt that she has a Facebook page with 79 friends. But trust me, I'm not planning on befriending her.

She had a sidekick named Jim -- another great doctor who is doing his fellowship at Penn. Turns out that young Jim remembered being honored by Governor Casey at the State Capitol for winning the Geography Bee. That was 1988. Jim was in 8th grade. Funny thing is that I was working for Governor Casey back then at the young age of 25. In fact, I probably wrote the proclamation honoring young Jim. And now here he is treating Karen.

So back to the chemotherapy. There's a lot to this (actually, about 4 pages of notes) that I won't get into here. It's overwhelming. This "journey" just took a brief ride through the "House of Horrors." In short, Dr. Kaplan-Tweed (and Jim) started by outlining a combination of two chemo drugs, Taxotere and Cytoxan (aka TC) that come with most of the expected (and some unexpected) side effects: hair loss, low white blood count which increased risk of infection, fatigue, mouth sores, neuropathy and, of course, the dreaded GI and nausea side effects. But keep in mind, Dr. Tweed assures us, "chemotherapy isn't what it used to be" (I can only imagine what it used to be like). What she means is that the side effects can be managed more effectively (not the hair loss, of course). There are other possible -- though more rare, side effects -- including your nails can turn black (or even your tongue....YUCK!) and some patients get leukemia (again, rare). They lay it all out for you...the good, the bad and the ugly.

But it gets better (well, not actually better, worse). Since Karen has triple negative cancer and she has a family history that includes breast, uterine and ovarian cancer and her tumor size is greater than 1 cm (I thought that was small), she's apparently a very good candidate for a clinical trial currently underway. Because triple negative cancer tends to be more aggressive and has a higher rate of recurrence, doctors are interested in finding new ways to treat this type of cancer. The clinical trial actually uses drugs that are already FDA approved. They're not new. In fact, the drug combination (Adriamycin, Cytoxan and Taxol) is currently being used to treat breast cancer. Researchers think that using these chemo drugs in combination with another drug called Avastin (which is currently used to treat colon cancer and metastatic breast cancer) may reduce the risk of recurrence for people with Karen's type of breast cancer and history. So, what's the downside? A longer, more intensive and toxic chemo regimen. Similar side effects, but perhaps more intense. The upside: possibly getting rid of her cancer once and for all . We'll have some time to consider this option over the next couple weeks.

This all probably sounds worse than it is (right?). Right. But, it's not unusual to hear and read all of this and be filled with stark fear of these toxins that race through your veins and make you so sick you wonder what's worse, the cancer or the chemo -- and I'm not even the patient.

Karen wants to crush -- no annihilate -- this cancer with whatever it takes. As a political consultant, Karen was known to go for an opponent's jugular. She knows how to fight. Cancer, look out!

Thursday, May 21, 2009

Lymph Notes

Even though we were scheduled to meet with Dr. Tchou this afternoon for a post-op appointment, she called early this morning to deliver the test results from the pathology report performed after surgery. Why was she calling when we would see her in a few hours? Was she preparing us for bad news?

But the news was good...well, mostly good. The lymph nodes they removed showed no indication that the cancer had spread. This was very good news since lymph node involvement is an important factor in determining the stage of the cancer. The bad news: Dr. Tchou was unable to get "clean margins" of normal tissue around the edges of the tumor during the surgery. This means there are still some cancer cells in the breast tissue and, possibly the chest muscle, that have to be removed. Another surgery (on June 3rd) will now be required to "re-excise" the incision to get the remaining cancer around the tumor site.

The pathology report also revealed that the tumor was a bit smaller than first estimated...coming in at about 1.2 centimeters (not 1.5 cm). That's smaller than an M&M. Is this significant? Not much.

So now that the doctor knows the tumor size and the results of the lymph node biopsy, she can determine the stage of the cancer. And the determination: Stage 1. This is great news since this is considered an early stage breast cancer.

But unfortunately, none of this means Karen can call off the impending chemo treatments. The excitement over the early stage assignment is tempered by her worrisome "triple negative" diagnosis. Despite the small size of the tumor and the lack of cancer in the lymph nodes, chemo is required treatment for patients with "triple negative" cancer like Karen's (see posting "The bad news...if there is any bad news").

Thursday, May 14, 2009

Surgery

Karen is out of surgery. Although the doctor expected it could take up to 2 hrs., the doctor calls me in the waiting area after just an hour. The outcome is encouraging. The lump was relatively small, about 1.5cm, which is what they estimated. More importantly, the tumor was not attached to the chest muscle. Very good news. They also removed four "sentinel" lymph nodes from under her armpit. The sentinel nodes are the primary nodes that collect fluid that drains from the breast. If the cancer has spread to lymph nodes, it will show up in these nodes first. A biopsy of the lymph nodes will be performed and results will come back in about a week. If cancer has spread to any of these nodes, the doctor will need to perform an additional surgery to remove more nodes. A pathologist will also look at the tissue that was removed with the tumor to make sure that they have "clean margins" all around the tumor. This means that the outer edges of the tissue that was removed must be clear of cancer. If there are cancer cells on the outer edge, the doctor will have to reopen the incision and remove more tissue until she is sure that she has all of the cancerous tissue. So, the possibility of more surgery in the next couple weeks remains. For now, we wait.

Though the surgery itself went well, Karen had a nasty reaction to the tracer dye used to locate the lymph nodes. Only 0.2% of patients have an adverse reaction to the dye. Guess who was in that 0.2%? When I came back to the recovery room to be with Karen she looked like she just ate a Volcano Double Burrito from Taco Bell. She was red...or maybe, orange. Or maybe red like a fire truck. More red than me...and I'm pretty red. And covered from head-to-toe with hives...big welts. She was a mess. (So much for that mini-facial exfoliation moisturizer thing she did this morning). They tried Benadryl, Hydrocortizone and a bunch of other drugs, including morphine. Nothing seemed to work. But, in time -- over 3 hrs -- it did start to improve. The redness slowly faded, but the hives were still driving her crazy. Exhausted and the last patient in the recovery room, she was wheeled to her hospital room at 8:30 p.m. What they expected to be an outpatient procedure ended up as an overnight in the hospital.

Wednesday, May 13, 2009

Beauty waits for no one






It's the morning of Karen's surgery. Surgery is scheduled for 1:30 pm and we have a two hour drive to Philadelphia to the Hospital of the University of Pennsylvania (HUP). But for Karen, beauty is always the number one priority. For Karen, a good beauty regimen is the start (and end) of any day. And the morning of surgery to excise a cancerous tumor and a chunk of her breast tissue is no exception. On a day when make-up is hardly necessary and the condition of your hair will matter little under a hair net, Karen decides that a mini-facial is a good idea. Well, at least she's not showing too many signs of anxiety....yet.

Beauty and appearance will surely be a recurring topic in the coming weeks and months. Not because I place a high importance on them (OK, maybe just a little bit), but because Karen does (and cancer is about to collide head on with vanity in just a matter of weeks). It's only fitting then that Karen has kicked off her trip to surgery with a good exfoliation and a moisturizing mask. Thankfully, she'll be blemish-free and have clean pores as she greets her doctors and nurses in the OR.

Sunday, April 26, 2009

Drs. Tchou (choo) and Wu (woo)

Treating cancer takes more than just one doctor. In fact, it takes an entire medical team. For Karen, that includes a surgeon (to remove the cancer), a radiation oncologist (to treat the cancer with radiation), a medical oncologist (to guide the chemo treatments), a plastic surgeon (to reconstruct the breast(s), if necessary), and an internist or primary care doctor to deal with everything else in between.

First up, the breast surgeon, Dr. Tchou (pronounced choo). Dr. Tchou examined Karen and the MRI results and was concerned that the tumor was close to or possibly attached to the chest muscle. This could be a bad thing -- for a lot of reasons. First, removing it might first require chemo to shrink the tumor. Second, detaching it from the muscle could mean cutting into the muscle (that hurts). And third, a tumor that "involves" the chest wall or muscle means you go directly to Stage III cancer. It was not possible to tell for sure from the MRI whether the muscle was involved. More consultation with Karen's medical team of doctors would be necessary...Karen's case (and her tumor) were going to be presented to the "tumor board" (picture a bunch of doctors sitting around a big table deciding whether you have a good tumor or a bad tumor). Anyway, fast forward...the "tumor board" thinks it looks OK and suggests that the surgeon proceed with a lumpectomy. A lumpectomy and "sentinel node biopsy" is scheduled for May 13th.

On deck, Dr. Wu (pronounced woo). Thankfully, Karen has decided she doesn't need Dr. Wu's talented skills just yet (OK...well, maybe just a little lift here or there would be nice). Instead, a lumpectomy will "conserve" the breast (that's a nice word, "conserve", isn't it?). Besides, the reconstruction options weren't all that appealing. Now, most husbands might get excited about the prospect of breast implants for his wife. But trust me, you don't want to go there. This visit was not a good one. In fact, it was one of the few times so far that Karen has broken down. Perhaps it was the thought of a "shark bite" scar on her buttocks (yes, that's exactly how the doctor described the result of taking tissue from your ass to use it to reconstruct your breast). I told you that this was not a good visit.

As we discussed reconstruction options in the event that Karen chose to or had to have a mastectomy, we learned about various options, including 1) using Karen's own tissue to rebuild the breast (she's too thin to take anything from her tummy, thus the buttocks were proposed) or 2) using implants. With implants, talk turned to such things as inflating expanders, symmetry, silicone and saline. But implants were not without their own set of issues and complications. Overwhelmed with all the information -- not to mention a lovely photo album of before/after photographs of other patients -- it became too much to bare. Enough! Meeting over. Done. No shark bites (whatever that looks like)!

The medical team is still being assembled. The radiation oncologist was consulted early on and will enter this drama again in a later act. The use of radiation in Karen's case is still somewhat uncertain. Because Karen is no average case -- I mean, her cancer is no average case -- doctors must also consider whether or not radiation also poses a risk because of her connective-tissue disorder (CTD), Ehlers-Danlos. Radiation is a risk for people with CTDs. Whether her disorder is one of them is still an open question. It's an important question obviously since radiation is a key part of treatment. With radiation, you may be able to keep your breast(s). Without it, we're back to the wonderful world of Dr. Wu and her shark bites. But I'm getting ahead of myself a bit. Radiation doesn't come until after chemo (first they poison you, then they blast you with radiation). This means that while Karen is enjoying chemo, she and her doctors can ponder the radiation question some more.

So, this all sounds rather awful and scary. It is. But Karen is facing it bravely. But, no shark bites for her.

Friday, April 17, 2009

"The bad news...if there is any bad news..."

Karen has breast cancer. But to be more specific, her diagnosis is: Dx 04/15/09, IDC, ER-/PR-/HER2-, 1.5cm, Grade 3, nodes-TBD, stage-TBD.

That's all short-hand. I quickly learned that most breast cancer survivors use short-hand like this on discussion board postings or blogs to let others know about their diagnosis, and later, about their treatment plan. To the average person, it means little. So let me explain:


Dx = date of diagnosis

IDC = type of breast cancer (there are several); IDC stands for Invasive Ductal Carcinoma. This means the cancer has spread outside of the milk ducts in the breast to the breast tissue. About 80% of all breast cancer is IDC. So, at least she's in the majority here.

ER-/PR-/HER2- = This is known as Triple Negative Cancer. It sounds scary. It is. What this means is that Karen's type of cancer is not fueled by estrogen or progesterone. Nor is it sensitive to growth signals from the HER2 protein -- whatever that means. Anyway, the doctors can't use hormone drugs to starve the cancer or target the HER2 receptors. This means that chemotherapy will definitely be a part of her treatment plan. Only 10-15% of breast cancer is triple negative (3N). Karen's now gone from being in the majority to being in the minority. I'm sure we'll learn a lot more about 3N in the weeks ahead.


(Sidebar here: when Karen's first doctor shared the results of the pathology report with us, she said, "The bad news, if there is bad news, is that the cancer is not receptive to estrogen." What does she mean "if there is bad news"?...Did I miss the goods news somewhere here? She has cancer for christsake? She went on to tell us that "you'll be offered chemotherapy" ...."offered"....she made it sound so pleasant...sort of like "you'll be offered coffee and pastries." Let's see...I'll have one order of chemo and a side order of radiation...thank you very much! Having said all of that, she is a very good doctor and our decision to go to Penn had nothing to do with her offer of chemotherapy).

Grade 3 = Cancer tumors receive a grade of between 1 and 3. The grade tells you something about how the tumor cells are growing and dividing. For example, "calm, well-organized growth with few cells reproducing" is considered Grade 1. OK, we know that there's nothing "calm and well-organized" about Karen. She's not a Grade 1. With a Grade 3 tumor, the cells are growing and dividing more quickly and they are very disorganized. This, unfortunately, is Karen. But I'm told that the cell growth is all "relative" and that the grade doesn't mean all that much in the "big picture." I'm not sure about you, but that doesn't put me anymore at ease. In fairness, I've also learned that the higher the grade, the more vulnerable the cancer is to treatments like chemo and radiation...so that's encouraging. See, there's a good side to everything.

1.5cm = tumor size; that's on the small side; under 2 cm is a good thing, I think. The tumor size is a factor in the stage of the cancer. The larger the tumor, the higher the stage.

Nodes = refers to how many lymph nodes are found to have cancer. We won't know this until after surgery and a biopsy of the lymph nodes they remove. And depending on the initial results, they may have to remove more.

Stage: Can't know this until we have the results of the lymph node biopsy. The stage of the cancer -- which can range from 0 to IV, determines in part, the treatment plan. Three pieces of information factor into the stage: tumor size, # of lymph nodes "involved" and whether the cancer has metastasized anywhere else in the body. Based on tests so far (chest x-ray, MRI, bone scan), no signs of cancer elsewhere -- very good sign (more on staging later...let's not get ahead of ourselves).

I've probably violated every HIPAA rule in sharing these details. It's funny how we sign all the paperwork to guard our privacy and then turn-around and blast it over the Internet for all to see. It's also funny how we used to write in journals and diaries and keep them under lock and key...or at least hidden under a mattress. Today, we simply write blogs and let everyone in on the details of our lives.

Thursday, April 16, 2009

To Blog or Not to Blog?...that is the question.

I thought for days about whether to blog about Karen's cancer "journey". It would be a first for me -- the blogging, and Karen's cancer, of course. I'm on Facebook, Twitter and LinkedIn, but rarely "update" there. What would I say anyway? Do I really want everyone to know what's going on in my life? Each day? Each hour? Do they even care? Why would they care?

But this is different. Living with and fighting breast cancer is pretty important. People do care. Karen's family and friends care. So, by blogging about it I might be able to accomplish several things: 1) Keep our friends and family abreast (pun intended) on Karen's "journey". (I can't get used to using the word "journey"...it's just weird, but saying "cancer" isn't exactly easy either); 2) build awareness along the way --- girls, remember to "feel your boobies"; and 3) hopefully, share some funny stories, of which Karen will provide an endless supply.

I struggled with a name for the blog. Maybe this would be a lot more interesting if I just titled it, "My Life with Karen." Anyone who knows Karen, knows that life with her is an adventure all its own. The stories would be so much more interesting and funny. Some stories might even be as scary. "My Wife with Cancer"?? Boring and depressing? Perhaps. But "My Life with Karen" sort of misses the point.

Karen will need to be reminded that this is my blog. Yes, it's her cancer, but my blog. She's a born editor and a perfectionist, so she'll want editing rights. But she'll have to settle with the rights to strike posts that talk too much about bodily functions (I did say that this blog would include "the good, the bad and the ugly", didn't I? After all, this is cancer. Cancer is ugly. Trust me, we're going to see and hear about the "ugly").

I'm not sure how this blog will evolve, or whether it will evolve at all. I can't tell you what it is, but I can tell you what it isn't:

-- It's not a blow-by-blow account of every up and down of this "journey."

-- It's not a woe-is-me/us drama (everyone has a cross to bear at some point; this is ours).

-- It's not a breast cancer crusade (though if it helps bring more attention, great).

-- It might not always be medically accurate (I'm not a doctor and this is complicated stuff).

-- It's not all about Karen (what?!?!). OK...mostly about Karen.

I have no idea where this will go or whether I will even stick it out (the blogging that is...Karen and the cancer are locked in for the duration). You're welcome to tune in or tune out. It's your choice.

Wednesday, April 15, 2009

Spring Awakening; Rude Awakening


It's spring. The azaleas are blooming with bright pink flowers. The grass is growing greener (well, at least in other people's yards). The sun is setting later in the evening and warmer weather is near. But this year, spring awakening also brings a rude awakening.

And so it begins....the "journey," that is. That's survivor-speak (or so I've learned) for people living with cancer. It is not a journey we planned to take. In fact, we don't even know where we're going. It may be a long journey and it won't be fun. But funny things will certainly happen along the way. And I hope to share them here -- not only the funny things, but the good, the bad and, now and then, the ugly.

Actually, the journey began just over a month ago, April 8th to be exact, when my wife, Karen, unintentionally grazed a lump in a relatively bony area of her chest just above her left breast. When she came home that day and showed it to me I could feel it, but even scarier, I could actually see a small marble shape just under her skin.

"Where the hell did that come from all of a sudden?" I asked out loud.

"How could you not have noticed it before?" I said. I tried to convince myself that the lump wasn't actually in or on her breast. After all, it wasn't in her breast tissue. Or was it?

She replied, "Uh, honey...that's where my breast would be if I wasn't 47!" OK, so I felt a little stupid and maybe a bit embarrassed. The least of my worries.

That's where it began. On a typical spring day in April. And just weeks later I'm using words like "journey". Ahhhhhh!