Tuesday, May 14, 2019

A Few Preliminary Words on Oral Cancer

Every two months my husband returns to his cancer center for a checkup.  We pray often that his cancer will never return, that it is gone for good, and that secondary cancers will not surface.

I don't think I ever actually mentioned this, but his cancer last summer was Stage 4.  As of early June, we knew it had spread (the large mass on his neck was evidence enough, but a PET scan also showed activity there), but we didn't realize it had spread so extensively, involving extracapsular spread out of the lymph nodes.  We discovered that in early July after his 11-hour surgery; the surgeon had to remove part of my husband's hyoid bone and jugular vein because they had both been encroached upon, and that was when I realized fully how aggressive this "little cancer" really was.  After radiation and chemo began, he couldn't really talk for weeks, and he couldn't eat or drink for months.


Life is such a gift. Time is the greatest blessing.  He's healing so well now. Every two months we look forward to getting the green light for another two months--getting the affirmation that there's still no cancer to be seen.  At our next check-up, in late June, he'll undergo his first chest CT scan, because if this cancer spreads, it tends to go to the lungs.  So we pray for a clean and clear scan. 

*             *           * 

Head-neck cancers are becoming much more common in younger people with no risk factors. In fact, not long ago I was talking to a lady I'd just met who said she knew a 17 year old girl who had just been diagnosed with tongue cancer.  Seventeen!  The girl, like my husband, had no history of smoking, alcohol use, or a viral infection. This lady theorized that cell phone use might be causing the increase, but I gently told her that my husband doesn't use a cell phone.  So much for that theory. :) 

To that end, I want to create a few posts that are specific to head-neck cancer, just in case anyone out there is going through the same thing.  This first post entails my tips for keeping up with your health in a preventative, watchful way.  (Not a worrisome way! No one needs to be a hypochondriac and I do not believe in living in a state of fear about the future or "what if" situations.)

First, be sure to see your dentist every 6 months for a cleaning and exam.  The 17 year old girl knew she had a spot on her tongue but she never told her parents and she ignored it; it was her dentist who found it and sent her to an ENT.  The dentist knows what a healthy mouth looks like, so be sure to always keep up with those visits for yourself and your children.

Second, if you have a sore in your mouth that will not heal after a couple of weeks, go to the doctor and have it checked out. My husband noticed the ulcer on his tongue sometime in the late summer or early fall, and thought it was a cold sore that would go away.  It never did, so he finally (wisely) went to the doctor later in the fall and she sent him to the ENT.  Anytime your body isn't healing up quickly, it's not a bad idea to get checked.

Third, if you or a close loved one is diagnosed with a head-neck cancer, including tongue cancer, my vehement advice is to go straightaway to a comprehensive cancer center.  They do not exist in every state, so you may have to travel (we did).  During our initial brush with cancer, we thought it was a simple Stage 1 and so we stayed in our small city, which has a reasonably good health care system.  In retrospect, this was not the best idea, and once the cancer returned a few months after my husband's initial surgery, I knew we had to go elsewhere.  And here's a fact: the course of treatment that the tumor board in our city recommended was in opposition to the standard of care, which we learned after visiting two different cancer centers in two different states.  If we'd not sought second and third opinions, we never would have known this.  Look here to find a comprehensive cancer center. I am so grateful for the care and expertise that we received. 

That's all for now, but next time I'll write a bit about the practical bits of going through treatments and some tips on that. 

Until then, I think it goes without saying how grateful I am to have my husband looking so fit and healthy, with skin healing and hair growing back and a bit of weight gain happening, as he looked at Easter (in the photo above).  And in remission!!!  Thanks be to God. 

Tuesday, April 16, 2019

The Upside-Down Kingdom

"God sees our care for those around us. He places a high value on the meals we make for our hungry family, the care we give to our sick relatives and neighbors, the countless drinks of water we serve to our children and grandchildren, and the welcome we offer to people by opening our home.  Jesus made it clear that when we provide for others' daily needs, we're giving directly to Him.  We serve Christ by serving those He loves......




"....with this in mind, within the limitations of our hours and days we can make significant, eternal contributions by caring for those God loves.  We serve in an upside-down kingdom where God is pleased with the small and unseen, with the widow's mite, the mustard seed, and the loaves and fishes. Faithfulness in the little things will make the invisible kingdom bright and visible."

                                                       -Real Love for Real Life, by Andi Ashworth

Tuesday, April 9, 2019

"The Choice Would Be Mine"

I'm currently reading the autobiography of one of my cousins, who earned a Congressional Medal of Honor at the age of 17 when he threw himself onto a grenade and pulled another grenade beneath him, saving the lives of three nearby soldiers.

 I've known his story for years through family lore and a book my great-great aunt wrote about our family, which I read multiple times as a child, but hearing his perspective of how and why he (fraudulently, having lied about his age) enlisted at 14 years of age is so gripping.  He was incensed by the attack on Pearl Harbor and driven by grief at having lost his own father several years before to cancer.  To think he enlisted when he was only two years older than our son Finn is now astonishes me.  He was full of valor, wild passion, and grief--and he was so resourceful.  

From the prologue: 

"Having already borne the weight of my life's biggest loss, I was not afraid to face whatever awaited me on Red Beach One, Iwo Jima. I had no way of knowing that in a matter of a few short hours I would make the most important decision of my life and in the lives of three members of my fire team.  The choice would be mine: either I could die alone or all of us would die together." 

Can you imagine being 17 years old and realizing you are about to die?  And that by pulling grenades under you, you can save someone else's life?  And then being able to do that? That is what I call true grit. 

Miraculously, Jack survived and went on to a life full of recognition and adventure. 

Friday, March 22, 2019

The Habit of Perennial Gladness

"Gladness is Perennial. --- Now, if we have made it clear to ourselves that there is in each of us a foundation of Gladness, not an intermittent but a perennial spring, enough and to spare for every moment of every year of the longest life, not to be checked by sorrow, pain, or poverty, but often flowing with the greater force and brightness because of these obstructions; if we are quite sure that this golden Gladness is not our own private property, but is meant to enrich the people we pass in the street, or live with in the house, or work with or play with, we shall be interested to discover why it is that people go about with a black dog on their shoulder, the cloud of gloom on their brow; why there are people heavy in movement, pale of countenance, dull and irresponsive.  You will wish to find out why it is that children may go to a delightful party, picnic, haymaking, or what not, and carry a sullen countenance through all the fun and frolic; why young people may be taken to visit here or travel there, and the most delightful scenes might be marked with a heavy black spot in the map of their memories, because they found no gladness in them; why middle-aged people sometimes go about with sad and unsmiling countenances; why the aged sometimes find their lot all crosses and no joys.  

"This question of gladness or sadness has little to do with our circumstances.  It is true that we should do well to heed the advice of Marcus Aurelius: 'Do not let your head run upon that which is none of your own, but pick out some of the best of your circumstances, and consider how eagerly you would wish for them were they not in your possession.'"

--Charlotte Mason, Ourselves (emphasis mine)

....a good reminder from my current reading.  Circumstances come and go, but gladness and gratitude may stay no matter what is happening in the circumstances of one's life.  That's not to say that we can't be sad when we suffer losses or feel down about a situation.  That's not to say that we shouldn't seek help when we are too depressed to get out of bed or function in daily life. That's not to say that we can't have a gloomy disposition on a tired or hard day.  But it is to say that "looking on the bright side" is, more than anything else, a habit that is cultivated over time.  

My neighbor has a quote on her wall: there is always something to be thankful for.  

And I think that's true. 

Tuesday, March 12, 2019

How Does Cancer Change You?

Recently I sipped a strong cup of Yorkshire Gold tea while a friend asked me, so, how has cancer changed you? 

This is hard to answer, because the shift has been so fundamental.  In my mind, cancer changed everything. There's the obvious: my husband's multiple scars, his changed speech, the effort of eating. Then there's the more subtle: what's in the heart.

I respect his emotional privacy so I don't advertise that on here, but I can write about how it has changed me. 

Our lives look a lot like they did before cancer. My husband goes to work. I take care of homeschooling, homemaking, and children. Our rhythms and routines have fallen back into place, for the most part.  

And yet, my heart is so different.

I told my friend I feel like I live with more intention and she said "I already felt you were one of the most intentional people I know."  Perhaps, but even more so now.  

The scales fall away and you really do see what's worth spending time on and worrying over, and what's not.  

Perfectionism 

I will never again waste my time pursuing absolute perfection around the house or with my appearance (good thing, since I'm getting older and it shows). I just do my best and am satisfied with that.  It's not worth the trouble or worry to try to keep up appearances. I am totally done with it.  (I'd already kicked it to the curb to a certain extent before, but now it's gone.)

Perfectionism is overrated and rooted in pride.  Last year humbled me to my core as I realized over and over again how human I truly am and how little I can truly do on my own.  I spent such a long time in earlier years feeling more concern over my image than I should have; a life-threatening illness put everything into sharp perspective.  I'm not saying that I'm living a slovenly, devil-may-care existence (ha, that is not me at all), but rather that I'm finally starting to do the right things for the right reasons, instead of the right things for the wrong reasons.

This is a huge heart change and has made a big difference in my life.

Suffering People 

Other people matter.  Suffering people matter.  The Holy Spirit definitely spoke to me recently and sent me to take the kids to look in on an elderly couple in our church who couldn't get out.  It was such a nice visit and I know it mattered to them.  Such a small thing to us.  Yes, we gave up a morning of homeschool.  So what?  What's the point of "homeschool" if you can't learn how to live life?

So many small things mattered to us during my husband's cancer treatments.  You have no idea how the tiniest things really do matter.  My heart is so much bigger now for other people who suffer.  In so many ways I wish I could turn back the clock and do more for some people who are now gone, whose suffering perhaps I could have eased a little bit if I'd realized what a difference it could have made.  I can never get that back.  I can never do that and I genuinely regret it.  All I can do now is learn from my experiences and allow the Holy Spirit to boss me instead of always trying to boss myself.

Selfishness 

I'm so much less selfish now.  I can't believe how selfish I have been, especially when I was a little younger.  When Finn was little I was still a selfish, juvenile person.  I don't think other people saw me that way but I know what was in my heart and how I put myself first over and over again. Cancer cured me of this because it helped me see how worthless and shallow the pursuit of my own agenda really is.  I was a productive person at the expense, often, of other people whom I loved and that is simply no longer acceptable to me. That's not to say I don't still struggle with selfishness: I DO.  But it's easier for me now to squash those tendencies and re-align myself with what matters most. 

Surrender 

I'm the oldest child of my family and used to be a type-A, over-achieving, control freak.  In my 20s I learned not to try to control my husband, but I still tried to exercise a lot of control over a lot of things.  That slowly eroded as I got older and wiser, but cancer was, without a doubt, *the* thing that made me surrender control.  To be honest, it takes heaps of effort and energy to try to control and manage so much, and I'd simply rather put my time and energy elsewhere.  I had to let go of so many things last year.  I had to let other people care for my children a lot, for instance, because I had to care for my husband.  It was so hard for me to do this.  All I could do was to ask God to step in and take care of it all, and He did.  The idea that we have control over our lives is a pretty little illusion that we often indulge in to keep ourselves feeling secure, but true security is only found in trusting God with everything in our lives--the process, the outcome, all of it

And finally....focus.....

What really matters in life?  It's such a cliche to say that cancer teaches us what matters most.  And yet.....it does.  What matters is loving others the way God loves us, caring for others with grace and empathy and compassion (particularly our own family members, but also strangers), and realizing that God is both sovereign *and* good.  When all that is internalized, so much of the chaff of daily life is blown away and allows us to focus on the wheat: the real, nutritious, living parts of life that feed our souls and nourish the souls of others.  



All this isn't to say that I'm a humble, compassionate, unselfish, surrendered, focused soul who can now blissfully float through her many daily responsibilities with nary a furrowed brow.  Oh, how I WISH that were true! But I'm human and imperfect.  However, it is true that I am more humble, more compassionate, more unselfish,  more surrendered, and more focused than I was a year or two ago.  

Not everyone is impacted by illness in the same way.  I remember years ago talking to a colleague who had lost his mother at a young age, just as I did.  He said losing her made him really ambitious: he wanted to achieve and DO and conquer. For me, losing my mother made me want to do less, because I saw how fragile and precious the days really are, and how important it is to invest in relationships and not goals.  So just because this is how cancer has changed *me*, it's not how cancer changes everyone.  We're all unique and God has different lessons for each of us to learn through our trials. 

 It's just a matter of keeping our hearts and eyes open to see where He is leading us. 

Monday, March 11, 2019

For the Hungry Soul


A True Lent
by Robert Herrick

Is this a fast, to keep
The larder lean,
And clean
From fat of veals and sheep?

Is it to quit the dish 
Of flesh, yet still
To fill 
The platter high with fish?

Is it to fast an hour,
Or Ragg'd to go,
Or show
A downcast look and sour?

No: 'tis a fast to dole
Thy sheaf of wheat 
And meat
Unto the hungry soul.

It is to fast from strife,
From old debate 
And hate;
To circumcise thy life. 

To show a heart grief-rent; 
To starve thy sin;
Not bin: 
And that's to keep thy Lent. 



Lent began last week and the daffodils are blooming.  My husband continues to be cancer-free.  I lost my darling grandfather three weeks ago.  My cousin just had her third baby last week.  Life in all of its joys and sorrows continues, and in the midst of it, Lent and the promise of resurrection and eternity.  

Thursday, January 31, 2019

The Inefficiency of Care

"The standard of the exploiter is efficiency; the standard of the nurturer is care. The exploiter's goal is money, profit; the nurturer's goal is health--his land's health, his own, his family's, his community's, his country's....The exploiter wishes to earn as much as possible by as little work as possible; the nurturer expects, certainly, to have a decent living from his work, but his characteristic wish is to work  as well  as possible.  The competence of the exploiter is in organization; that of the nurturer is in order...The exploiter typically serves an institution or organization; the nurturer serves land, household, community, place. The exploiter thinks in terms of numbers, quantities, "hard facts"; the nurturer in terms of character, condition, quality, kind......"

                  --Wendell Berry, The Unsettling of America 

This quote is on my mind all the time lately.  Care v. efficiency, and what that looks like in daily life, is an interesting juxtaposition.  It's a framework for considering how we keep house, homeschool, parent, build relationships.  Are our goals profit (monetary or otherwise), efficiency, organizing, maximizing numbers (or, let's say, test scores)? Or are our goals the more subtle, immeasurable goals of care, health, doing a job well, ordering life to appropriate ends, serving others? 

I don't think that they are completely at odds with each other, but I do think Berry is right when he says they are distinct. And it doesn't take much to look at our culture and see what the overall cultural value is, from schools (excessive focus on test scores) to parenting (too many activities and not enough slow time).  Even homeschooling falls victim to the exploitative mindset: using our kids as reflections of ourselves or our homeschooling philosophy without considering the fact that they are unique, for instance, or hyper-scheduling a "school day" to cram in the learning, rather than letting learning unfold at a more subtle pace.  Who is healthier: the child who believes he or she must achieve and do in order to be worthy in the eyes of a parent, or the child who feels loved, listened to, respected, and nurtured? I know many adults who grew up in both categories, the without a doubt, the adults who grew up as children in the latter group are the ones who are, as adults, healthier people. 

From another book I am reading right now, this quote: "Caregiving is not efficient.  It is impossible to keep caregiving within the strict bounds of a tight schedule." (from Real Love for Real Life by Andi Ashworth)

I remember once going to meet an author I really admired and instead of being able to really say anything heartfelt and meaningful I felt rushed along, as she was Quite Busy. I don't blame her, really, because there was a line of people behind me waiting to meet her.  But although her books had ministered to me in the slow way books do, the "efficiency" of dealing with people made our in-person encounter quite lackluster and disappointing to me. In retrospect, I wished I'd never approached her, because I felt the encounter was so meaningless!

In contrast, last year I met an amazing violinist who came to perform in our city with our symphony orchestra.  Although he was also entertaining a long line of people, he received me with joy and excitement, and when I told him that I was learning to play violin, he shared my enthusiasm, and told me to keep working hard, and also commiserated with me on how difficult violin is physically.  I walked away from that encounter feeling encouraged and grateful.  He hadn't dealt with his fans efficiently--he was caring.  

I'm just coming out of a long season of caring and so the inefficiency of caring is quite real and recent to me.  Thinking about it, I know that it was the right thing to do, to put the brakes on life and embrace the rhythms of my family's needs.  I naturally love efficiency. I plan my errands efficiently, try to schedule my time efficiently, etc.  but what I've discovered is that I can be efficient with errands and time--to a certain extent--but not with humans.

(It's the classic Mary and Martha dilemma, isn't it?)

In any case, in this new year, as we get back to a much more normal life after very difficult months of cancer treatments and recovery, I'm focused on staying a little inefficient, on taking life at a slower pace, and ordering our days to the ends of health and care.  Less productivity is a small price to pay for really loving others, as I have learned in the hardest of ways over the past year.  

Thanks, Wendell Berry, for the framework!