Category Archives: Breast Cancer – A Loving Fight

Our battle with breast cancer

Breast Cancer - A Loving Fight

Doing the Manly Thing

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“Cancer is never just about the person who has it. At least it shouldn’t be. It’s about everyone around that person. Chris made a selfless decision and I love him dearly for it.”  – Stefanie Spielman about her husband Chris before she lost her battle with breast cancer.

Many of you may not know who Chris Spielman is, but he was an All-American linebacker from Ohio St. and NFL All-pro.  He also exemplified in my mind a great role model for all husbands out there when it comes to supporting your spouse.  It isn’t just that he is a celebrity that I give him credit for being a good husband.  I think he went beyond the call of duty as a co-survivor.  I copied the story below by Lisa Olson

Recently his wife passed.  What I really loved about this story is how he showed what co-survivorship is all about.  I‘ve attached a link here, but you can also just read this story below:

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by Lisa Olson 

When Chris Spielman suffered a brutal neck injury, he said overcoming it was a breeze compared to most everything his wife Stefanie had faced. When her hair started falling out, when clumps of it began landing on the floor and in their toddler’s hands, Chris decided to shave his own head, a soldier in solidarity. When it became apparent that more chemotherapy and a mastectomy — breast cancer’s evil twins — were high on Stefanie’s schedule, Chris bid a temporary farewell to the NFL, skipping an entire year so he could be with the woman he proposed to on the 18th hole of a Putt-Putt course.

None of the above should be considered exceptional behavior by husbands or partners forced to watch their loved one undergo treatment for cancer. But everything Chris did back in those gloomy days following his wife’s diagnosis was regarded as unusual and, in some parts, emasculating.

Stefanie Spielman, 42, died Thursday after a lengthy battle with breast cancer. Chris Spielman, the NFL and Ohio State star, was by her side, along with their four children, and while she deserves a thousand hosannas and a billion thanks for her work in raising millions over the years to combat the disease, it should be noted that he was quite the trailblazer.

When they met at a teen dance in their hometown of Massillon, Ohio, Chris was a high school stud who soon would be featured on the cover of a Wheaties box; his football journey continued at Ohio State, where his bone-crunching hits as an All-American linebacker became legendary. By the time Stefanie found a lump in her right breast during a routine self-exam, they had been married 10 years and he was deep into an NFL career. This was 1998, and let’s just say the world of sports was not as enlightened as it is now.

She was three months pregnant when she felt that lump, and later miscarried. Chris told her he wanted to skip his upcoming season with the Buffalo Bills so he could accompany her to doctor appointments, and hold her head when the chemo made her nauseous, and be a calming force as she underwent surgery to remove her breast. Eight stellar years with the Detroit Lions and another two with the Bills (he set a team and personal record in 1996 with 206 tackles) had given him much credibility with the football-crazed public, but how would they understand this kind of absence?

“Players just didn’t leave the game unless they were injured or retiring on their own terms,” Stefanie once told me at a fundraiser for Lance Armstrong’s Livestrong foundation. “It seemed so simple to me. Just tell the fans your wife has breast cancer. Who knows? Maybe it will have some kind of trickle-down effect. Maybe one fan will go home and say to his wife, ‘Honey, sweetheart, don’t forget to make that appointment for your mammogram.’

“Cancer is never just about the person who has it. At least it shouldn’t be. It’s about everyone around that person. Chris made a selfless decision and I love him dearly for it.”

He took the season off, shaved his head to match his wife’s beautiful bald dome and still there were the grumps in the Neanderthal section wondering why a Pro Bowl linebacker had to go and mess up their Sunday fun. When Stefanie’s treatment reached a manageable level, he returned to the NFL for the 1999 season, this time with the Cleveland Browns, but a second neck injury ended his NFL career.

“Nothing my body has gone through can begin to compare to what Stefanie deals with almost every day,” Chris once said. “She’s my hero.”

Stefanie’s plan, formed in the aftermath of her diagnosis, began on a small level, with a sign at Big Bear, the Spielman’s neighborhood grocery story, asking shoppers to please donate money to Ohio State’s James Cancer Hospital. A few thousand dollars, she said, would have made her delirious. Girl Scout troops and baseball teams and individuals and clubs from all across the community began offering their pennies, and within six months those pennies totaled $1 million.

The Stefanie Spielman Fund for Breast Cancer Research, along with the Stefanie’s Champions awards, has since raised more than $6.5 million for the cause. She survived four bouts with cancer before a fifth, and final, recurrence in the spring left her wheelchair-bound. She accompanied Chris to Ohio State’s season opener against Navy, when he was honored at halftime for his induction into the College Football Hall of Fame. Against a backdrop where Chris once played to phenomenal roars, the loudest applause, by far, came when Stefanie was introduced.

And in a cruel coincidence, on one of her last days came a report from a federal task force saying women should delay mammograms until they’re 50, 10 years later than the medical community has traditionally recommended. Not to make the Neanderthals in the balcony squeamish, but if you, the sports fan, have a mother, a sister, a wife, a girlfriend — or if you just happen to like healthy breasts — this might be a subject worth discussing at halftime. There is one tough linebacker who’d appreciate it.

“Stefanie has gone home to be with the Lord,” Chris Spielman said in a statement released by WBNS radio in Columbus, where he co-hosts a radio show. “For that, we celebrate, but with broken hearts. I want to thank everyone for their support over the last 12 years. Together, with your help, hopefully we made a difference in this fight.”

We hear all the time about athletes who’d never win plaques for Father or Husband of the Year. They fail in the complicated tango between celebrity and sports, neglecting their human responsibilities in exchange for fame and an enlarged ego. But there are many more who quietly go about their business between the lines, before returning home and acting as good citizens, good partners.

Chris and Stefanie Spielman’s story might have been one of the first public examples of an athlete doing the right — dare we say, the manly — thing. Thankfully, and in her memory, it won’t be the last.

(by Lisa Olson)

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

What’s Up? How’s Your Wife?

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This is my most special place in all the world. Once a place touches you like this, the wind nevers blows so cold again. You feel for it, like it was your child.

– Moonlight Graham, Field of Dreams

Ah..what to write.  When I run each night, the mind swirls with this thick soup of thoughts.  Some people have writer’s block.  I have writer’s neurosis.  I wish you could see the list of half written blog entries that I have yet to complete.  You will, but hopefully they will still be relevant.  I guess tonight I will have to address some recent inquiries to my email……

Funny how I still occasionally get an email (this week I got two) which asked how my wife is and why I don’t write about cancer anymore in my blog.  The short answer is that this blog was never intended to be about my wife’s cancer.  It was just a continuation of my personal thoughts on life.  My public memoirs if you will.

The long answer is that I can say that I feel so lucky that my wife is doing great, gets monthly shots and takes daily pills to make sure the cancer does not come back.  We are just about at the one year mark of five years of Tamoxifin treatments (20% done is quite an achievement).  The monthly shots leave a nice black and blue mark on my wife’s abdomen, my wife’s surgical scars are starting to fade, and occasionally we talk about her side effects, but I take my cues from my wife for the most part.  She’s ready to move on.  That said, we don’t forget.  We don’t forget the fears, we don’t forget the worries, we don’t forget those nights without sleep, and we don’t forget the months of surgeries.  Reading some of the blogs and talking to those who have just been diagnosed or who have wives reminds us of where we were and how much our lives have changed.  

Breast cancer is now a large part of our lives so much so that we have to escape.  No breast cancer walks or runs for me.  My runs are my way of running in honor of my wife, mom, mom-in-law, cousins, aunts, and friends who have all been struck by breast cancer.  Every night when I run I am reminded of our fortunate results, my wife’s strength, and those others who we have met through our ordeal.  By the way, of all the above mentioned, only my mother was over 50 when first diagnosed.  Yes, this is in light of the new panel study which says that women should now wait til 50 before having mammograms.   It is really a shame that we are now trying to cut back on preventive medicine during a big time for research and discovery.  Now is not the time to cut back when we are making so much progress.

Yes, breast cancer as a topic is all around us now and we just can’t escape it so we relish those moments when it doesn’t remotely come close to infiltrating our conversations or thoughts.   It is like my friend who works with juvenile delinquents on a daily basis.  He has told me that because of his job he doesn’t want to have children of his own.  This week I met with a gentleman who has been waiting a month and his wife’s surgery is right after Thanksgiving.  I had met him a couple times, but this week he just broke down.  His fears and concerns finally overwhelmed his facade.  His worries about his wife, his kids, the mounting medical bills, and all the uncertainty surrounding the outcomes finally came to a head.  It just took me back a year and I relived it all in one hour.  That feeling of hopelessness hit me like a ton of bricks.  I broke down with this man I barely knew.  I couldn’t tell him things would be alright as I knew it wasn’t what I wanted to hear either.  I wanted a path.  I wanted a path out of the mess.  All I could tell him was to bury himself into caring for his wife.  Focus on the task at hand.

That night I ran a long run.  Couple that encounter with an incident earlier in the morning where I had a woman faint in the elevator bank in my office bulding.  It turns out she was having a heart attack.  All she kept saying was “my babies, my babies” . Her predicament had me distracted the rest of the day until I had my conversation with that breast cancer husband.  Both incidences had me reeling.  They reminded me of how fragile life is.  All I wanted that night was to be alone with my thoughts so I could just make sense of it all.

Well I hope that explains it all.  Thankful this Thanksgiving? Yep I sure will be.  Happy Thanksgiving everyone.

Breast Cancer - A Loving Fight, Route 53 - Celebrity Sightings, Route 53 - Life is A Highway

A Brand New Day – Breast Cancer Awareness Month

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Been a bit since I posted thoughts here.  A lot has been going on in life so it is good to capture these thoughts now.  I have been inundated with life events that have put me in a very pensive mood about what where I’ve been, where I am and where I am going in life.  After these last two weeks, today is defintiely a Brand New Day.

When I arrived home yesterday I saw the biggest smile on my wife’s face.  To be welcomed by a big kiss a day after coming home to find that I lost a close relative to a heart attack was definitely a good pick me up.  This may be the beginning of a brand new day on our journey with cancer.  My wife’s joy was from her follow up post-op appointment with her surgeon.  I think her doctors were also relieved to see her smiling as well as she said that they all gave her big hugs.  Yes, my wife was her usual “chatty Cathy” self again, and that meant all was really well.  It just dawned on me that it had been over 18 months since I had seen that excitement on her face.  I had missed her “text” message in which she had told me how happy she was.  She had been in good spirits, mind you, but this was just different.  Some say our journey of survivorship is over, but I think when we look back it has only just begun.

One of the things that I didn’t know would affect me so much is the way Breast Cancer Awareness has grown so much.  Last year when my wife was just starting her battle we might have missed all of the action, but this year we both seem to be more aware of how powerful a movement Breast Cancer Awareness month really is.  I felt like every week there was a walk or run for breast cancer and I did notice a lot of products in the grocery store when purchased gave back to some breast cancer research fund.
Ingrid Michaelson sang for Breast Cancer at Slide
Ingrid Michaelson sang for Breast Cancer at Slide

For example, Ingrid Michaelson, pictured above, sang at a local club last night here in San Francisco with proceed donations at the door going to Breast Cancer Organizations in the Bay Area.  The song “Be Okay”  has become a feature song in the fight against breast cancer.   She was also part of the Hotel Cafe Tour last year in which the album, Winter Songs, gave $.50 for each sale to breast cancer research.

SF 49er Cheerleaders wear pink tops for breast cancer
SF 49er Cheerleaders wear pink tops for breast cancer

This past weekend, all of the NFL paid homage to breast cancer and its survivors.  At the 49er game, donations were taken at the gate, referees wore pink, cheerleaders wore pink and players wore pink.  Before the game, 50 breast cancer survivors were introduced to the players.  One of the captains, 49ers QB, Shaun Hill, who wore pink cleats during the game, met with the survivors.  He was later quoted as saying how he had put on the pink cleats without thinking.  He didn’t know anyone with breast cancer, but when he met these women and saw the spirit in their eyes he said it suddenly became real to him and the shoes meant something.  He said it even rattled him a bit before the game started.

Zach Johnson, PGA Tour Pro, sports pink ribbon at President's Cup
Zach Johnson, PGA Tour Pro, sports pink ribbon at President's Cup

And just yesterday I was at the President’s Cup.  Nothing formal was done around Breast Cancer Awareness but a couple of the US players, notably Phil Mickelson and Master’s Champion, Zach Johnson, wore pink ribbons.  Phil’s wife Amy, a native of Northern California, is currently battling breast cancer.  What was readily apparent was that Phil made a point of saying hello and stopping for a second to speak with every person who wore a notably pink cap or ribbon to stop and sign an autograph.  Several elderly women who wore Susan G. Komen shirts were startled as he stopped to say hello and give them each a hug.  It didn’t go unnoticed by me or any of the thousands of spectators who saw this connection and warmth he exhibited especially when compared to other golfers who whisked right by the crowd without any kind of acknowledgement to the screaming fans.

So what does this mean?  To me it is just the sign of how powerful a community of similarity around a single cause can be.  I wish the same thing could be done around heart disease.  Just like the push for a mammogram, perhaps everyone should get an EKG.  With the obese population we have and the number of people who die of heart attacks each year, why shouldn’t we all get one.  I probably need one and my cousin who passed away in his early 50s in his sleep earlier this week could have used one.  I bet his 3 teenage children and wife wish that he could have had one.

My son with the NFL ref sporting pink wristbands and ribbon
My son with the NFL ref sporting pink wristbands and ribbon

These events when they hit so close to home just make me think more about my life in so many ways.  What was the last thing I did with my cousin?  Gave him a High-5 and a hug at the 49ers home opener.  How good does that make me feel?  It helps me feel like my peace with my cousin is there.  It reminded me that when you see someone make sure you leave a good impression with them until you see them again and to remember that smile until the next time you see them.  My cousin and his wife and family are models to me of where I will be in 10 years.  I can’t help but see that in 10 years I don’t want my heart to fail on my own children and leave them fatherless as they just get started with their lives.  It is sad though.  My cousin was my 10 year barometer in life.  His death to me is a kick start to remind myself to do as much as I can to spend quality time with my children and really make sure they know me and my wishes for them.  My life is an open book to them.  No secrets.  My fears and hopes and dreams are there for them to inspect.

My cousin and his wife were the first people we told on my father’s side of the family when my wife was diagnosed with breast cancer last year and they were the first to help out.  My wife and I are beside ourselves about how lucky and fortunate we are to be winning the battle against breast cancer a year later at the same time we are seeing people who seemed so healthy leave us behind.  There is no rhyme or reason it seems.

NFL All-Pro LB Patrick Willis sports his pink gloves and cleats
NFL All-Pro LB Patrick Willis sports his pink gloves and cleats

Finally, my son’s classmate’s dad finally lost his battle with pancreatic cancer earlier this week as well.  Yes I feel like signs of my life area ll around me.  Watching another dad with similar age children leave behind a wife to take care of a 10 and 7 year old is just so sad.  When first diagnosed he told me how his main goal was to fight the cancer as long as he could but he knew he couldn’t win in the long run and thus his other goal was to impart enough of his thoughts on life to his two sons so that they’d have something to guide them.  Watching the 10 year old this week, his father did a good job in preparing him  for the inevitable day.  Sad that it has to be at such a young age though for such a good kid.

So where do I go from here?  As I said, it’s a brand new day.  We can only go forward, live life to it’s fullest and make sure we taste every experience we can get and share it with everyone in such a way that we have an impact on those who might have to be reminded or forget the power of the human spirit.

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Tales from the Waiting Room

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Okay, 4th time in a surgery waiting room in 13 months.  It is one of the worst places to wait.  Whomever said misery loves company was absolutely wrong.  Today is even worse as I wait because the room is packed and the angst on the faces of the family just put a damper on my mood.  People are talking loudly on the phone, sobbing uncontrollably, pacing over the zig zag rug pattern, or even joking with each other.  Emotions run high and all of these people are just coping with their fear and worries with different strategies.  Me?  I’m here blogging this as two people argue over what we should all watch on the television.   I think we are settling on re-runs of Friends.  Appropriate, I guess.

Maybe my wife and are used to this or maybe even numb as we had to somehow already get through the day until her 4:30 surgery.  Not as difficult as her past 3 surgeries I think my wife and I are  good at distracting ourselves.  I came home to find my wife had baked blueberry and muffins for our kids, planned out the pick-up schedule after school for the week and arranged a couple play dates.  My mother and I looked at each other and chuckled.  My own mother who had breast cancer told my wife she is probably the only person on this planet who baked before her mastoplexy on an empty stomach.

This never is easy though.  My wife’s doctors always give me a time that is less than it is.  A 6 hour surgery turns into 8, a 7 hour surgery turns into 9, a 2 hour surgery turns into 5 and already today’s one hour surgery is over 2 hours old.  Every time the double doors to the surgery room open, everyone jumps up with an expectation it is their surgeon.  I think sitting here alone with my computer is the best thing.  Most of the anger is geared towards other family members about getting something to eat or drink.

It does make me appreciate my wife though more and more each time.  These hours alone make you appreciate what you love about that person in the operating room.  It isn’t just about hoping that they get out out the surgery okay, but about how much you love them, what they do for you, what you want to do with them and more.  As I left for the hospital I thought I’d confess to my son that his mom was having surgery.  He knew and I told him his mother would be okay.  He casually said, “I figured”.    I wanted to hug him but he just smiled and went up to do his homework.  If he only knew how worried his dad is about his mother.

Well, I don’t think I can wait much longer.  I need to go eat and move my car out of the garage….oops there she goes off to the recovery room.  Doctor said she is good.  Time to get dinner! Gotta get out of this depression chamber.

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Foghorns, 49ers, and Fall

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Life is a roller coaster ride
Time turns the wheel and love collides
Faith is believing you can close your eyes and touch the sky
So shine while you have the chance to shine
Laugh even when you want to cry
Hold on tight to what you feel inside and ride

– Lyrics to “The Ride” by Martina McBride
Kicking off a New Season in San Francisco
Kicking off a New Season in San Francisco

Today is officially the last day of summer and the first day of Fall.  A beautiful time for me and a wonderful time in San Francisco.  I believe if Mark Twain had stayed for the Fall, his famous quote would have read, “The coldest Winter I ever spent was the Summer I spent in San Francisco, but the warmth of its Fall Sunny Days and Foggy nights give the city it’s charm the makes it so beautiful.”

This is now the time to enjoy its 40 hills, its 49 square mile (some say its officially47) and some of its over 3000 wonderful restaurants.  Tourists are gone, the weather is at its best, and if you want to venture up to the Napa wine country, it is time to see the Fall crush of the grapes which many say is the best time to visit.

Someone asked me recently, “What is with the midnight runs?” They really aren’t at midnight, but I have to admit they are later than most people run.  They are also somewhat of a sore point with my wife as she doesn’t like my running in dark clothes with no identification on me.  The truth of the matter is that while I am running sparsely populated streets at night, I do run a pretty regular route, I run on sidewalks and even some of the parking valets around know my schedule well enough to tell me if I’m running late, early or slow.  Last night I was even able to tell the valets at Spruce Restaurant the score of the late night ESPN game.

Running the streets of San Francisco is where I do my best thinking.  Sometimes those nagging issues you’ve been dealing with for days or weeks just somehow find a solution at mile #2 when you’ve got that lactic acid building  in your leg, but you stretch it out running up the steep incline on Upper Fillmore imagining you are Rocky only to find Gino’s liquor store and the last patrons of Jackson Fillmore coming out of the trattoria with sated appetites instead of a big statue at the top of the stairs overlooking Philadelphia.

It is my favorite time to run in San Franciso.  The end of summer in San Francisco usually means our hottest days are coming.  It  means nights filled with low lying wispy fog that drenches your face during your runs.  It also means those deep fog horns blaring throughout the night.  During the day the fog blows out to sea and the days are filled with 80 degree weather. My dad used to call this fog, San Francisco’s natural air conditioner.  It is so refreshing and almost is like our Spring in many ways.  In fact with baseball season ending and football season beginning, it is like a whole new season, especially in San Francisco, home of the 5 time champion 49ers.  Growing up going to games with my dad it was the time of hope and new beginnings.  To me it still is that way.  Now it’s with my own son.

Running the streets of San Francisco, with foghorns blaring I just smile to myself thinking about the great time I had at the ballpark with my son earlier in the day, introducing him to the people who have sat around us in the same seats for 30 years.  The same people who gave me cookies and milk when I was his age now give them to my son.  My son has no clue how he’s just living my life from 30 years ago.  Cheering on the 49ers, high fiving strangers after a great play and eating terrible food that give you a stomach ache when you get home.   It’s a cyclical pattern in life and yet it is a new beginning.

I can look back 30 years, but these days while I celebrate a year since my wife’s breast cancer surgery, I also look back a year when I was playing nurse to my recovering wife.  It still isn’t over with her pending surgery coming.  This will again hopefully be the last surgery for a while.  This is one cycle I don’t want to have repeat itself.  A year can make a huge difference both good and bad.  There is no doubt in my mind that my wife and I are stronger than we were before.

So back to my running, I’m not an extremely spiritual person as  I’ll go to church for special occasions, but running has been my place of worship and my confessional.  Each run is my own search for the truth.  I don’t run with others, justw ith my thoughts.  It is where I ask myself if I truly believe. It is where I push myself and question my actions and where I look for the answer to many of life’s questions.  It is my solitude that allow me to begin a new day every day with renewed energy.  There is a running commercial where the person has to get through that first mile before they reach that special runner’s place.  Yes, that the runner’s high.   It is true for me like many.  I feel better after an exhausting run that before I left.  San Francisco has a part in that.  It is that friend that is with me on every run.  Its streets are the paths in life that I go over time and again.  Yes Fall is here in San Francisco and my motivation is higher than ever.

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Another Milestone of Thanks on 9/9/9

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“I won’t give up if you don’t give up” – Train from “Calling All Angels”

I want to give a big thank you to all friends, family and business associates who helped my family deal with my wife’s illness this past year.

Today was just another day of running around the house getting the kids out of bed, reminding them to put their clothes away, brush their teeth, comb their hair and rushing them out the door to school.  Hundreds of thousands of families repeated that same ritual this morning without batting an eye. Kids waving at me in my rear view mirror as I drove off to work just put that smile on my face that puts one in a happy place.  These small things we take for granted, but I’ve learned to cherish these moments which are the strong fibers in the fabric of our lives.

Midway through the day I was running through my emails, my Facebook updates, and my Tweets as I ate my lunch and someone wished me a “Happy 9/9/09”.  The date in slightly different formats had two meanings for me.  Exactly 10 years ago my wife went into labor with our first child.  The hospitals were then packed on 9/9/99 with tech geeks in the area wanting to have their babies on that day.  Incidentally my wife didn’t eventually give birth until 9/11 which gave my son an equally auspicious birthday. 

More recently, the date marked exactly a year since I spent one of the longest days in my life at the  hospital as my wife went through a 6 hour surgery to have her cancer removed.  As I responded to a few emails including one from the mother of my son’s classmate (her husband is dying of cancer) I could only think once again of how fortunate we are.  I can only say thank you so many times to the wonderful friends who supported us physically with meals, carpools, rehab walks, babysitting,  and even just a nice cup of coffee as well as emotionally with advice, cards, flowers, and prayers through a very tough time. All of those efforts allowed us to get back to the living our normal every day lives without hardly skipping a beat.  A big thanks also goes out to all our new friends who met as we entered into this new community in our lives who helped us better understand what we would be going through and prepared us for the months of hard work. Even more to those old friends I grew up with who gave their unconditional support even though we hadn’t seen each other in decades and barely knew my wife.

Why the video in this post?  “Calling All Angels” by Train is one of those songs that has been in my iPod for years and was listened to occasionally, but this past year it kept pushing me through some of my long night runs (over 1100 miles since the night of that surgery), inspiring me to keep going until it became a big part of my mantra run.  I felt like I was running the streets of San Francisco calling for angels to help and they did.  Incidentally, Train is coming out with a new album called “Save me San Francisco” (the band was formed here) and their hit song, Hey Soul Sister, is a catchy little tune that I think captures the energy of  the sisterhood of women suffering from breast cancer.  The fight against breast cancer is an intense one wrought with emotion.  The sisterhood is strong.  The women I met as I searched for answers showed me how a strong community atmosphere can be so supportive.  The song also captures for me my love for the woman who has been both my hope and my inspiration over the last year.

Well when I got home tonight all I could do was give my wife a big hug.  The date had hit her in the middle of the day too.  We smiled as our kids wondered why mommy and daddy were so happy that they had to give each other a big embrace in the kitchen.  We just told them we are just very very lucky people.  Only a year gone by and the ability to look back and smile and turn our heads to the future is a good thing.

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Some Mondays Don’t Go as Planned – A Loving Fight

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“It Ain’t Over til It’s Over” – Yogi Berra

Gifts from our UCSF Decision Services group
Gifts from our UCSF Decision Services group

As I start this entry we are waiting for the nurses as my wife waits on what we hope will be her final surgery, almost a year to the date of her original breast cancer surgery.

This summer has been a rough one with my father-in-law in the hospital on the opposite coast for 6 weeks fighting a staph infection that laid him up with severe back pains and a high fever which made him hallucinate.  Trying to entertain kids on their annul summer visit while juggling a couple hours in the hospital each day was not a fun chore for my wife.  On top of that her longtime neighbor and family friend died of lung cancer while we were visiting.  My wife loves going home to visit friends and family, but this time despite the pending birth of our new nephew, I think she was happy to get back home.  She hadn’t even gotten the chance to mention that she was about to undergo her 4th surgery in a year.

Four surgeries in a year is not a badge of honor and at the same time it is not even close to the amount of surgeries many people have gone through with breast cancer, but looking back on it I still wouldn’t wish it on anyone.  A total of 22 hours in surgeries so far and the 4th only expected to be 90 minutes and I can only imagine the toll all the anaesthesia takes on the brain.  Maybe its old age but I can already sense some memory issues with my wife.  She’s been through a lot and I have all the respect for her approach to this last one.

This morning our kids were cranky about having to get up early and were giving my wife a hard time.  It really didn’t make me feel good to have to pull each of them aside and remind them how lucky we are.  For two young kids who have had nothing but cancer and hospital visits all around them for the last two years, they instantly knew this was not the time to be acting up and realized how fortunate to have what they have.

(Move ahead 15 hours)

Well my wife had a bit of a temperature today and they didn’t want to operate on her for fear she might be getting sick and there could be a resulting infection.  They knew my wife and I would be disappointed when they broke the news.  We had waited 4 months for this date, but now have to wait more.  After such a hard morning  getting there it was a bit disheartening.  I could see my wife was bothered.  I was bothered too.  A little for me and a lot for her.  Tonight I just felt I had to apologize as I think she could tell I was not happy with the delay as well.  We just want to get all of this overwith.  One last surgery we hope.  Now the wait again.  A wait for another surgery date.

We can’t be angry though.  My wife and I tried to console each other and subtly reminded each other of how lucky we are to be where we are today.  It hasn’t been easy and this wasn’t going to end easy either.  We’d been patient this far and couldn’t take this personally.  It is so easy to lose your cool when you can taste that chance of moving to the next step.   What’s a few more months…heck we still have to wait a few more years to be considered cancer (and Tamoxifen) free.  The cancer clinic itself has been great.  Just a couple weeks ago during her pre-op appointment they gave her a framed article from the Wall St. Journal that she had helped with (she took photos with the physicians) as well as a huge bouquet of flowers.  They really care for her well-being and would rather err on the side of conservatism.  Getting to know people on a first name basis makes things so much easier on the patient.  I remember seeing them having to look at the charts to remember my wife’s diagnosis and name.  Unfortunately they know it real well now, but that sterile feeling of being “just another breast cancer statistic” is gone.  Being able to ask your sugreon about their kids and how they are liking their new school just helps to ease the tension.

On a side note, our son’s classmate’s father who was given only a few weeks at the beginning of the summer is still holding on.  He is weaker now, but he really wants to see his kids start the school year.  It will help them and I think he will make it to that goal.  It is really sad, but in a small way having their sons back in school with such a supporting community will make the eventual loss not as lonely.  Just last year this happened with another schoolmate when they lost their mother after her six year battle and the school rallied to make meals all year long.  I had a chance to see the father at the pool this summer and he said it had been a long year but it taught him about patience and forgiveness with his two young boys. They had lived with this cancer with their mother for 6 years and he said the highs and lows were rough.  This year was very numbing without her. Knowing that my wife was in a similar situation, he just put his hand on my back and let me know I could talk whenever I needed.

Yep.  Patience.  Practice before and after.  Take one step at a time. There is no rush when it comes to cancer because it is a long road.

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Shared Decision Making for Breast Cancer Patients

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Patient Doctor Consultation with Decision Services Representative on hand
Patient Doctor Consultation with Decision Services Representative on hand

In today’s Wall St. Journal there is an article on the Decision Services offered at my wife’s breast cancer clinic, the Carol Franc Buck Breast Cancer Center at UCSF: http://online.wsj.com/article/SB10001424052970203674704574328570637446770.html#articleTabs%3Darticle

Decision Services is a great resource when you are overwhelmed with all the information and emotions when first diagnosed. At the time I thought nothing of the services. Now that I look back on it, the resources and advice for helping to manage our experience were invaluable:

– My wife and I watched many DVDs, pamphlets and other articles together,
– Prepared countless questions for our visits
– Reviewed stats together
– Went over online research made available to us
– Reviewed our notes of our meetings and prepared follow up questions

In this information age, services like this are so important to have. Patients have so many questions and thoughts running through their head that they sometimes miss what is being said to them, forget to ask the questions that they wanted to ask and feel frustrated and left out. Many times my wife would hear one thing and I would hear another. We’d just review the notes taken by the notetaker and we’d have our discussion resolved. I could even use this in my everyday life.

The service provided interns who took great notes during our visits before, during and after our visits to make sure we understood everything that was said in our visits and to help us get more informed answers from my wife’s doctors. We often submitted laundry lists of questions before each visit and they were prepared with their answers before we came in for each appointment. We all know how we forget what they tell us during those visits because we are so worried, but they provided great notes from our appointments.

Yes, that is my wife featured in the article’s photos.

As we reach the aage of health reform in the US, services like these will become more invaluable as we help put some control back in the care of the patients. There are many early adopters of such services such as the Palo Alto Medical Foundation, The Wellness Community, the Mendocino Cancer Resource Center, Breast Cancer Connections, the Humboldt Community Breast Health Project, and (abroad) the Edinburgh Cancer Centre.

The entire team at the Breast Care Center, led by Laura Esserman, is blazing new trails in health care. Check out https://www.breastcancertrials.org/bct_nation/home.seam and http://www.athenacarenetwork.org/ for other innovations from this group!

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

UCSF Breast Cancer Videos

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Both my wife’s surgeon, Dr. Shelley Hwang, and her oncologist, Dr. Hope Rugo, are part of the team at UCSF’s Carol Franc Buck Cancer Clinic in San Francisco and have put together a series of videos (Dr. Rugo is also part of Breast Cancer.org’s panel of Medical Experts). The videos are reflective of the care my wife is receiving.

The videos discuss bisphosphonates, Tamoxifen, AI, OS, and DCIS research as well as alternative approaches to care for those who have discovered DCIS.

They are both very interesting or at least can help you in your dialogue with your physician or even your spouse. Sometimes it is hard to communicate to others what is going on and I know I personally found these easier to digest than having an emotional discussion with my own wife and physicians.

One thing you will notice about the demeanor of both physicians is their sense of community with the patient as well as their keen sense for wanting to find both the causes and the cures for this disease. It is my hope they will not only uncover many of the keys to solving breast cancer, but other cancers as well.

– Shelley Hwang on DCIS

– Hope Rugo on New Frontier of Hormone Therapy

Breast Cancer - A Loving Fight, Route 53 - Life is A Highway

Don’t Blink – A Year With Cancer

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So I’ve been tryin’ ta slow it down
I’ve been tryin’ ta take it in
In this here today, gone tomorrow world we’re livin’ in

– Kenny Chesney’s Don’t Blink

  A year has now passed since that day I walked in and found my wife sitting at the kitchen table and she calmly told me that her doctor had found a lump.  You would think that will all of this upheaval that this is the year that could have seemed like it would have taken forever but it hasn’t.  While it has been filled with surgeries and hardships, we’ve tried to fill it with other events and highlights to mix it up.  The journey was tough but before we knew it we were through a surgery, on to recovery, back in to surgery, more recovery, etc.  Three surgeries later and we still have at least one more, but we are moving on.

  It is hard to move on though, because we have to respect where we’ve been.    As part of our 15th anniversary, we spent some time away and took the time to reflect on the past year.  You’d think that in a lifetime that this would be a throwaway year and one that you would want to chalk up as one you sweep under the rug and forget, but we agreed that our love grew for each other and our respect for each other and for ourselves grew as well.  When your relationship takes a step forward you don’t throw out that year.  So while in some ways the scars are still fresh and the dull aches are right there to remind us of what we’ve been through, the year has gone by some immensely fast.  We’ve actually have done quite a lot and accomplshed quite a bit.  I think it is because we didn’t procrastinate and sweat the little things.  We just went for it even if we had to stretch a little further to get there.  That said, time might have flown but we must have aged somehow.

  I had to laugh this morning when I went to grab one of those Sunday-Saturday pill boxes to take a Centrum cardio pill.  My wife told me I was grabbing the wrong one.  I was grabbing the PM pill box and not the AM box.   Last year we had no pill boxes and now we have one for AM and for PM!  We sure get old and become our parents in a hurry!   We had just had this conversation with some old classmates at a 30 year grammar school reunion.  We were all complaining of aches and pains (everyone looked pretty good quite frankly)  and it turns out several of my classmates also had gone through breast cancer recently.  At the same time several others were now in their early forties and still having babies.  Amazing.  early 40s is not too young to be having breast cancer and still not too old to be having babies.  Makes you scratch your head.  

  Meanwhile the beat goes on.  My wife is prepping for another follow up surgery at the end of the summer yet stiill undergoing her monthly examinations and her clinical trial.  They found some small indications of early osteoperosis but luckily her clinical trial has her taking medication to increase bone density.  This is so crazy what they can find these days.

  Speaking of aging I spoke with Dr. Ken Dychtwald, the reknowned gerontologist, today.  We were talking about the recent rash of celebrity deaths and he reminded me that in previous generations these people would have died 15-20 years earlier but with the extended lifespan we are all enjoying through the miracles of modern medicine and science that instead of deaths happening ‘in threes” we will be seeing deaths in larger groups. “There are just simply going to be more people dying every day,”  he said.  I nodded and he smiled and continued, “That is why we live life harder every day.  The secret to living longer is to live happier!”  That coming from a man who gets remarried to his wife every year. to renew his vows.