The Price of Cancer and the Thick Fog of Dread

There was a very good article in our local paper today about the cost of cancer.  Usually cost is used metaphorically- as in cancer costs your hair, your health, your hope, your life.  This article was about the true cost of cancer- dollar signs.  Often many people think, as I did, that if you have insurance cancer has a low price tag.  We are very blessed to have excellent insurance.  I am thankful for that every single day.  But, as this article pointed out, deductibles, copays, and drug costs are soaring.  As we get better at treating cancer the treatments get more and more expensive.  I'm not the least bit interested in the political debate or the discussion about insurance companies and drug companies right now in the midst of it all.  I'm more interested in people- the human faces we encounter with every visit to the Cancer Center.  We recently met with the business manager to discuss payments and cost.  She informed us that there are programs to help families and that the new guidelines for these programs are set at a poverty level of $93,000/year for a family of three.  Maybe my age is showing but that number shocked me.  And, the people coming in and out of the Cancer Center often show the stress on their faces.  It's not fair that in the midst of fighting for your very life you also may have to worry about losing your home or draining your savings.  I have always found it ironic that we are going to pay someone to make Brett very sick.  I know rationally they are making him well in the process but it is still ironic.  I'd much rather take the trip to Tahiti that I have already paid for this year.  I also think it is disturbing that we aren't allowed to talk about the financial toll.  It is never an open conversation.  Oh, we'll talk in small talk with friends at the store, family members, or with fellow patients in the chemo room about losing hair, feeling nauseated, the metaphorical costs, but we stop short of talking literally about the financial toll. It's definitely a touchy subject with many sides of an ongoing political debate.  I have no answers.  No matter what your situation, cancer is expensive- end of story.   I'm just glad that someone in the media took interest outside of the political debate and looked at real people and tackled the issue- literally, not metaphorically. 

We begin chemo treatments this week.  There is definitely a thick fog of dread hanging over me.  I feel like a two year old ready to throw a tantrum.  I don't want to do this, don't make me do this. And, all I'm doing is watching and worrying.  I don't even have the hard part. I think it's worse the second time around, knowing what to expect, knowing this round is longer and stronger.  Oh we're still laughing and we really are looking at this through a positive lens.  I guess in the metaphor of fog our hope is a strong light slicing through.  But, I cannot ignore the fog and the mileage we have in front of us before reaching the destination.  This is when I have no choice but to cling to my faith and cling I will.  I have written about fear.  I have written about anger.  This is pure and simple dread.  It's simply not fun watching someone you love feel sick.  It's not fun watching a man who never takes so much as a Tylenol build up a pharmacy on the kitchen counter top.  There's a pill for everything and we have a prescription for one of each.  Anti-nausea, antibiotic, antihistamine, anti- everything that chemo could possibly do to you.  It's all in my kitchen.  I'm glad they are there- glad we've made incredible advances at any cost- glad that my husband's very life will be saved by all of this.  But it is overwhelming all the same.

Anger Boils Over in a Pressure Cooker

In an effort to be vulnerable and real and honest it is imperative to share a day in which cancer was not a blessing in our household recently.  We often think of anger as a liquid substance- it can boil over and explode.  Last week we had a day at our house where there was plenty of boiling over and exploding.  Of course, the object of all of our anger was cancer but you can't really express anger to cancer.  It is much easier to express it and spew it forth on those around you that you love.

The day began with discovering that our Jack Russell Terrier (about 15 pounds) had devoured a very large chocolate dipped Valentine's cookie.  Due to a variety of circumstances we were not able to clearly identify the amount ingested until much later so the toxins simply had to run their course.  Chocolate can be fatal and we learned of the side effects and what to expect and when to grow concerned.  Of course, even typing this now I am smiling because it is quite humorous to picture Biddy running in figure eights around the house not really understanding why she was doing it but stopping only to pant and do it some more.  It's humorous because she survived the ordeal- only to ingest an entire piece of pizza and some garlic dipping sauce last night but that's a different post.

While the dog was tearing through the house like a mad , well, dog... anger was surfacing.  There was shouting about how we all worry too much.  There was guilt for leaving a cookie out downstairs on a table unwrapped.  There was anger for irresponsibility.  There were the inevitable words spoken that you later wish you could take back.  It was ugly.  Anger was boiling over and covering our household.  Everyone retreated to their corners and caught their breath.  It passed and we all realized that our anger was really about cancer and the fact that treatments are coming that scare us to death with their potential side effects and astronomical costs.  For those of us outside the treatments we dread watching someone we love get sick and then feel well only to get sick again. For Brett there is simply the dread of being sick and the what ifs- will my hair fall out?  will I be able to work?  will there be lasting side effects?  after all of this, will it work?

The dog's figure eights in a maddened state served as a perfect metaphor for our household that night.  We are all doing figure eights, mad with anger and worry and dread, and we are all pausing to look up at each other bewildered.  Just as the dog's anxiety and hyperactivity passed within a few hours, our anger subsided and we re-oriented ourselves to what is truly important.  We weathered the toxins and worked them out of our systems and allowed peace and faith to return.  The ugliness of anger is that when it boils over it almost always spills out over the ones we love.  The beauty is that they love us, they understand, they can forgive in time.

I hope there are no more figure eights in our  house in the future from dogs or humans.  I hope we can find a straight and steady course and hold hands and walk together as we face down the true focus of our anger.  I also hope we can let go of the anger and replace it once again with peace and blessings.  But, we're human after all and I'm sure we'll still have days in the pressure cooker.

Going for Gold

We met Brett's new oncologist today and got a "game plan" for chemotherapy.  We liked the doctor very much.  He was kind and caring and well versed on Brett's case.  He knew intricate details and his plan paid attention to each of those details.  He told Brett that there is hope and we are going for the gold medal- we just won't settle for bronze.  I like having a coach who won't take less than first place.  It's reassuring.  As we enter the competition- Brett versus cancer- it is good to know that our coach has a solid game plan and we are aiming for a complete win.  I like this new metaphor.  It is very reassuring and it makes one feel active in the process.  Although I am merely a cheerleader and water girl I hope to provide a supporting role that allows for Brett's continued strength when the game feels long and he grows weary.  I will be waiting at the finish line and will usher him to the podium.  The final ceremony will take place around our 25th anniversary in August so I'm dreaming of where to hold it.  I'm hoping to celebrate the gold medal walking along the coast in Monterey, California, hand in hand.

My father used to read Reader's Digest faithfully.  One of his favorite sections was "Laughter is the Best Medicine".  If you know him this is a metaphor for his life.  He taught me to laugh and it has been a gift during many difficult times.  Laughter is healing.  I'm ever grateful that Brett and I can laugh together.  I am thankful that many liquids have shot forth through nostrils at our dinner table.  Today brought great laughter.  A caring doctor who knows nothing of our history broke the sad news to us that the treatment would render Brett unable to have more children.  He was so very serious, not realizing we had taken care of this many years ago and were already dreaming of the day we would chase our grandchildren around the park and then happily send them home.  Brett and I giggled and the jokes that ensued throughout the day were a bit off color and downright hilarious.  At one point it seemed almost surreal.  We had just gotten gruesome details of side effects of chemo and had been prepared for a game that will last six months.  We were laughing in the middle of lunch, laughing with the kids as we broke the sad news that there would be no siblings, laughing at inside jokes this evening.  We laughed.  What a beautiful gift to share.  What wonderful medicine for a fearful and weary soul. 

Brett had to have his chemo port checked today which brought a visit to the chemotherapy room.  There were three older men receiving treatment and one of them was very animated and talking to the nurse and laughing about his dog.  That laughter was such a beautiful sound.  Laughter is medicine but today it was also music.  The melody soothed my soul and relaxed Brett's heart rate. 

On the way to winning the gold medal I am hoping to laugh and sing with others sharing the journey.  I'm so thankful for those cheering us on. 

Awkward Silences

Today brought a dental visit for a filling.  The assistant seated me and, while she waited for me to become excruciatingly numb on the entire left side of my face, she made small talk.  I usually try not to let my husband's cancer be the topic of every conversation.  I am open about the topic when it comes up because I fully believe sharing our story may help someone one day when they least expect it.  God drew me to a child named Joseph three years ago.  Though he lost his battle with a brain tumor, his mother's honest reflections online and his family's transparency, humanity, and courage inspired me deeply.   On the day of Brett's first cancer diagnosis three years ago the reason for my "accidental" discovery of Joseph became crystal clear.  Joseph's story lit the path and wiped away some of the immediate all consuming fear.   Sharing the story is important because we never know when someone may need it.

But...  Brett's cancer is not my first topic of conversation.  This is mainly because of exactly what happened today.  The dental assistant kept asking me how things were going, how my holidays were, how work was, if I was busy.  It became unavoidable so I explained that my husband was diagnosed with a cancer recurrence and a metastasis to the liver and chest wall.  We had weathered a serious surgery and would soon begin chemo treatments.  And, there it was- the awkward silence.  I always feel so badly because people just don't know what to say.  And, truly what do you say?  Would I have known years ago what to say? 

The word "cancer" carries so many emotions.  The mere mention of it brings fear, anxiety, confusion, memories of loss, and sadness.  This is because people equate it with powerful metaphors.  Cancer is a battle.  There is a war against cancer.  We do a relay for life because cancer steals life.  We fight cancer.  We survive cancer.  We hate cancer.  We make t-shirts and mugs to display our hatred.  We write poems about the things cancer can't steal because it is a thief.  Cancer is the enemy.  Could we find the words to say or a different mind set if we simply shifted the metaphors?

Shortly after Brett was diagnosed the first time and we got news that he had a very advanced stage of disease he said these simple words to me, "Cancer is a blessing".  Now, I was a wife fighting the enemy- I was in full war regalia armed for battle- I was ready to kill and destroy.  Needless to say my reaction wasn't pretty.  How can cancer be a blessing?  How can this man facing chemo and an uncertain future say that to me and truly believe it?  (and he did truly believe it)  Yep, to him cancer, the very thing robbing the breath of life from his body and making him weak, was and still is a blessing.  Talk about shifting the metaphor.

Cancer is a blessing.  It rapidly prioritizes your life.  It reminds you that life is a gift and not a guarantee.  It makes you love more deeply.  It allows you to speak your mind and take more risks.  It reminds you to kiss your loved ones good night, good morning, and sometimes for no reason at all.  It grows your faith and connects you to God in tangible ways.  It strips you so all you have is your faith to lean on and it has to be enough.  It reminds you that money is just money and you cannot put a price tag on someone's existence.  It allows forgiveness for the increase in profanity in your life.  (Forgive me, but I truly believe that sometimes God laughs out loud at my outbursts).  It reminds you of how you felt the first time you looked at your husband at the tender age of fifteen and your heart spoke and said, "This is it." It reminds you that the argument you had yesterday over something stupid needs to be forgotten because it was over something stupid.  Cancer is beautiful.

Now, I am not a saint and I don't live this out daily but I am trying.  I am trying to get up each day and say, "How blessed we are to have this gift, this reminder, this faith, this joy, this view of life" and I am succeeding more days than I am failing so that is progress. 

Steven Curtis Chapman has a song called "Beautiful Scars".  I think of it often now as I look at the numerous scars on Brett's chest and belly.  They are beautiful.  They tell the story of survival and strength, of courage and vulnerability, of the frailty of humanity and the birth of great faith and trust.  May we all have beautiful scars and may we all consider our trials blessings.

Killing Weeds

Up until a few weeks ago my husband of nearly twenty five years was a cancer survivor.  He wore that title proudly- having earned it through surgery and six cycles of chemotherapy.  In March, 2009, he was diagnosed at the age of 42 with Stage IIIb colon cancer.  He had not had many overt symptoms and we were in shock for many weeks after his diagnosis.  The cancer had perforated the colon and entered the abdominal wall.  It had found its way into a lymph node.

For a year we were in full battle mode.  We won, too.  We got news that there was no evidence of disease and began the "wait and see" period.  For those of you unfortunate enough to have experience with cancer you understand that every ache, pain, rash, cough, is a worry for awhile.  After two years, though, we fooled ourselves into believing that we had beaten it.  We were sailing along, going in for check ups, laughing in cancer's face.  Until the end of December...

Brett went in for a PET scan.  It was to be the magical scan- he would go on one year check ups that would lead to that magical five years cancer free.  This was not to be.  A phone call from our oncologist let us know that there was a lesion on his liver and several small areas of concern in his chest wall.  In addition, he has battled many instances of skin cancer and one of those sites showed metabolic activity. Again, we were in a fog for several days digesting the news.  I don't know why we were surprised.  I knew the statistics.  I knew there was "something" on the liver but it hadn't been showing any growth or activity.  I knew.... looking back I knew...

It's hard watching someone you have loved since you were fifteen years old go through pain.  Brett recently had a lobe of his liver removed and this resulted in a large hockey stick incision with 47 staples.  He is amazingly strong.  He has recovered quickly and is getting stronger gearing up for a more intense round of chemo treatments.  Three years ago they put in a chemo port for vein access for treatments.  We celebrated when it was removed.  Last week they put one back in- same location, going through the same scar.  I love that port.  It saves Brett's arms and hands from numerous pokes.  It spares him a great deal of pain and needle anxiety.  I hate that port.  It symbolizes what is to come.  I dread watching this big strong man get sick and be sick and start feeling better only to get sick again.  I wish I could be sick instead.  It's a truly helpless feeling.

We have a 19 year old and a 16 year old.  It's hard telling your daughter that her dad won't have hair for her upcoming wedding.  It's hard telling your son that his dad might miss some baseball games this spring when that is their shared love.  It's hard knowing that your children's teenage years have been overshadowed by a cancer fog that never really lifts.

Yet, cancer has its blessings.  Yes, you read that correctly.  We appreciate each other more.  We find joy in small things.  We share lots of laughter.  We love deeper.  We always knew life was precious in our heads- now we know in our hearts.  Every day is a gift.

I have been struck by the metaphors we use to describe cancer and the "journey" we are on.  Brett's doctor told him killing cancer is like pulling weeds.  Surgery pulled the big weed from the front yard.  Now chemo will kill the seeds spread and any small sprouts.  It's the "Round Up" for the lawn.  Fighting cancer is a war- we gear up for battle, we get strong, we face the enemy, we kill, we destroy...  Cancer is a thief- it hits us financially, it takes our strength, our health, our spirit at times.  We yearn for words to describe the cancer experience in ways that allows others a window inside to understand. 

I am happy to kill weeds but I wish they were in my yard and we were saving my lawn.   Being the caregiver to a loved one with cancer is truly a journey of self reflection, worry, and faith.  I'll be sharing the journey and some of the metaphors we find along the way.