Living among strangers

We have vacationed with other families that we know.  It is different than going out to dinner together or going to a party at their home.  It is far more intimate, seeing friends first thing in the morning, before anyone has had the benefit of coffee, or a hairbrush.  But if you choose to vacation together, you at least have some idea of what you are getting into.  

In this parallel universe we have joined, it is interesting, living among strangers.  Cancer is an equal opportunity disease. There is a cross section of society on a cancer floor.  You encounter all sorts of people, like spending the afternoon at the BMV.  

But then you bunk with them, in all your glory.  And theirs.  

As an institution, hospitals are in the business of healing, of helping folks return to health.  Part  of that involves tapping into the support of family, recognizing that our emotional health partners with physical health.  So, in addition to meeting all sorts of people, you meet all sorts of families.  And, as I like to say, 'families are messy,' which is a euphemism for "there are idiots in the world and someone has to be related to them."  

From my observations, tricky family dynamics are not suddenly simplified by stressful circumstances...they are magnified.  Cancer is pretty darn stressful, and like holidays, a reason for families to be thrust together.  Here is the gasoline...where is the fire?

In a hospital, they are forced to serve as a maitre d' putting patients, and by extension, their families in very close proximity to one another.  There are a host of variables that must be considered...the sex of the patient, the infectious considerations of both patients, their age, their likely duration of stay...  I imagine it is like the bride and groom trying to plan the seating arrangement for their wedding, but considering only certain qualities of the guest, like whether they select beef or fish.  

I did not pre-arrange seating at our wedding, and discovered at the reception that an uncle of mine who incidentally, had extracted his own teeth, was seated next to our dentist, who enjoys near iconic status in our family, evidenced by the fact that he attended my wedding. (premarital counseling in our family includes some very sticky questions...do you intend to convert to Dr. Hummel? If not, how do you intend to handle the dental upbringing of the children?)  I can only imagine what sort of conversations these two struck up.  But, even if it was less than ideal, it was only one night, one meal, and at least there was wine.

Point being, that in hospital, when all sorts get thrown together in a rather intimate and stressful situation, separated only by a curtain, it is less than ideal...and unfortunately, can last a bit longer than one evening.  The food is nothing to write home about.  I still cannot find the wine.  

Add to that the myriad of variables regarding something as simple, and essential to healing as how you best sleep... (Lights on, lights off, tv on, music, what time do you retire for the evening...what time, given the choice, do you get up...) To the extent that your needs, and those of your child are in conflict with the needs of your neighbor, there is some requirement for compromise and consideration. Lets just say that some folks have a better understanding of the concept of consideration and are more amenable to compromise than others.

Add in the various reasons for being hospitalized...fever, chemo, surgery...and things get even more more complicated.  You may need to encourage your child to eat a lot, after surgery in order to heal, but the child next to you is nauseous from chemo.  Or your child is NPO, as Brent currently is, waiting for a procedure, and the boy next door is eating his second meal of the day, smells of forbidden food wafting over on our side of the room.  Your kid needs to sack out, beat up from a long night of chemo, and the teenager next to him, only in for a neutropenic fever, is trying desperately to connect with friends, skyping loudly.  It is a challenge under the best of circumstances. Pediatric oncology seldom offers ideal circumstances.

Over the past 2 years, we have had many opportunities to room with others (ha!) and I have generally been surprised with how well this is managed, and how most families have been kind and courteous. I hope that we have been the same.

There have been some striking and memorable exceptions, however.  The curtain may offer some visual privacy, but there is no acoustic equivalent.  We are the involuntary witness, 24/7, of the toughest times for other families, seeing relationships at their most strained and stressed...  It isn't always pretty, this forced voyeurism.  It can be awkward, trying not to hear the intimate details of the patient's treatment (what is the point of signing reams of HIPPA forms in this situation?) or pretending that you haven't heard the heated argument between stressed out family members.

In order to mitigate my frustration with people at such times, I remind myself that by virtue of being on this floor, on pediatric oncology, these folks are having a tough time, are under stress, and warrant special consideration.  I try to forget the fact that we also find ourselves on this same floor.  

And whenever possible, we try to laugh.  Brent, upon remembering a particularly difficult match, joked that getting C-diff was worth it, because he had to be moved for infectious control, and fortunately remained in a single. He was quarantined into some precious privacy, away from the challenge of dealing with others.

We start with compassion, but laughter is our fall back position.  Sometimes, with a bit of snark.

Going to New York

I went to sleep last night, listening to the sound of a steady rain and the feel of the summer air coming through the window.  I woke to the rustling of the birds, a chickadee trill, the stirrings of the waking forest.  Then came the suburban sounds...a neighbors dog barking a friendly greeting, a car passing the house. This was followed by the more domestic sounds as Cinder jumps up onto the girls bed.  They murmur at first, then quietly talk and giggle together down the hall.  I listen to the sound of Dan's breathing as he sleeps next to me.  All distinctly the sounds of this place, of these people.  Of home.  In the stillness, I soak it all in and know that it is beautiful, and a blessing.  

I get up to start the coffee, put the breakfast in the oven, and finish the preparations for our departure.  All the while, I wonder what it will be like when we return.  When will we return?  My mental calendar officially ends on Thursday, a phenomenon that I privately call "scan day syndrome."  I find that the uncertainty that the future holds, while familiar, is something I am starting to get a bit anxious about again, mostly because I am no longer so terribly busy organizing things. It is upon us now, with nothing left to buffer the space.

I had a date with Lauren yesterday.  When we first told her about having Li-Fraumeni Syndrome and the scans and screening that she, Brent (and likely I) would have to do in order to find cancer early, I assured her that while we had to do hard, unpleasant things, we would do something special as well...like go to a movie or get our nails done, as a special treat to make up for it.  In the year and a half since I made that promise, the only special treat she got for doing scans... was brain surgery.  I am not exactly stellar as a parent in this regard.

She is amazingly patient, this daughter of mine.  And uncomplaining, mature beyond her years.  But, I don't want to push my luck.  And I really wanted have a date with her, to touch base uninterrupted, and spend time seeing how she really is, before I ditch her again.  I ditched her just weeks after that 'special treat' brain surgery that I mentioned...for Brent to have his first surgery in New York, thus avoiding amputation.  We were gone nearly 2 months. I am heading there again, this time knowing now that it will be a long time. 

We chat about the next several weeks as she gets her pedicure, so grown up.  Even though she is only 10, I ask her input about how she feels about scans...wait for me to return, or go with someone else?  We talk about oncology camp, and how much fun that will be, even without Brent...she is outgoing and confident.  I have no worries about her, but I think I will email to confirm which familiar faces will be there.  I know that Ceci, her nurse, will be there, and she will look out for her. We are so fortunate in this.

She selects my polish color, a bold pink.  I would never have picked this color, but I tell her that it would be a splash of Hollywood in the generally bland pallate of Sloan Kettering.  It would remind me of her, and that she would be with me.  Lauren really likes this.  We decide to do this again, and make it our quarterly date.  I feel like she is going to be fine.

Olivia will be fine as well.  We have prepared, talked about the plan.   We will all talk on the computer.  She will come visit in a few weeks to her 'birthday hospital' and we will have a date... All hurt of separation was forgiven with the revelation that New York City has a playground, and my promise to her that I will take her to the playground when she visits.  She can wear my perfume and smell like me, if she misses me.   That is all she wants.  It is simple when you are 5.  She is a pretty happy kid.

Alex will be busy with his sisters, and no doubt socializing as teenagers are prone to do.  He will enjoy visiting with my sister who is going to spend time at the house while Dan is away. We have neighbors who have kindly volunteered to take him to swim team.  If he is active, he is fine. He will be pretty active.

Leaving is still hard, but after having a nice breakfast together, it is time.  We go.  The lilacs are about finished blooming.

.

.

.

I pick up the drive through the mountains of Pennsylvania, which is 300 brutal miles of nothingness, while Dan dozes and Brent is watching a movie.  We have the strangest weather pattern, and seem to be skirting the edge of a front, because we have rain, and dark November-feeling clouds, but we frequently open up to blue and sunshine.  

I see a rainbow, which makes me happy, thinking about a friend in Hawaii, who frequently talks about them.  I have never been to Hawaii, but I suspect that rainbows are more common there with the more frequent rains.  I see another rainbow, a partial one, seeming to fall from a cloud.  It is almost a stylized rainbow, cartoon like.  I am amazed, delighted.  

Every turn brings another rainbow...to the right...right in front of us....double rainbow... To the left....interrupted rainbow...  They are everywhere, a frenzy of rainbows, for five solid hours.  As we approach NYC, I am positively giggling, and Dan and Brent are annoyed with me for my constant exclamations, because I just cannot help myself.  Dan said that we were driving through a rainbow factory...I like to think of it as a rainbow escort, wrapped up in promise and reassurance.  I finally said that the only thing that would turn off this parade of rainbows was the sun setting.

And as we breeze through the Lincoln Tunnel, with no wait, the reflection of the sunset on the clouds over the city is gorgeous.  Traffic is light, relatively speaking and we make the drive across Manhattan with ease.  As I pull up to Ronald McDonald House, someone else pulls out, leaving street parking for us right in front, which is the equivalent of finding a $100 bill on the sidewalk, because we will not have to move it to the garage until Thursday.  I feel giddy and reassured as we check in.

The travel here was easy, and I am hopeful that the rest of it will be blessed as well, full of encouragement, beauty, promise and hope.  

The timing of 'eventually' is perfect

They say that there is no such thing as coincidence.   I believe this.  I truly believe that there is a reason for everything.  And sometimes, it is not the things that happen, but the timing of those things that gives me goose bumps.

My son Brent was diagnosed with Osteosarcoma on his right pelvis nearly two years ago, and after 15 weeks of chemo, he had his entire right pelvis removed in NYC.  It was a giant surgery (18 hours) to remove a giant tumor. We were very fortunate to have found this surgeon, because he was able to reconstruct Brent's hip using donor bone, and save his leg.  (We are so grateful for the donor family as well)  There were 2 follow up surgeries back then, during the nearly two months that we were in New York, before we returned home to Ohio to finish another 15 weeks of punishing chemo.  The delays involved in the second half of chemo carried this process to nearly a year.

But, at the end of this year, my son was on the road to recovery.  He began physical therapy.  His marrow recovered.  He returned to school.  None of this was easy, but we were all happy to have active battle behind us.  There were still an ungodly number of visits to the hospital for scans, labs, PT, specialists... and at Christmas, a wound on his hip that simply would not heal sent us packing for New York again...a surgery whereby a muscle was moved from his abdomen over the donor bone, to help provide a better blood supply to the allograft and promote healing.

And he healed. It seemed to be a success, until last week's routine x-ray showed that the bone is disintegrating. Infection or cancer was the question of the day...because the cause of this deterioration dictated our choices.  If it were caused by cancer's return, there would be no choice. We would have to amputate and he would be on a very hard road of amped up chemo.

If it were infection, there might be some choice.  I prayed hard for infection, because my blood ran cold at the thought of cancer, both due to the orthopedic requirements as well as everything else that this implies.  Actually, amputation would be the least of our worries.  I am very glad to be able to put those thoughts aside for some time. May they remain there for all time.

We always knew that the donor bone would eventually need to be replaced.  'Eventually' is a very theoretical time, until you are looking at it face to face.  I am grateful that I am not smelling cancer's foul breath in this version of 'eventually.'

I would never have scheduled this, setting time aside for it.  But here we are.  And it will be ok.

Eventually, we will need to replace our roof...it is expensive and a very unsexy way to invest in your house, as I say. If you drop that kind of cash in your kitchen for example, you would have a party and invite your friends over to take a gander at your new cabinets when it was done.  There would be wine, and it would be worth the aggravation.  Which is why people ever embark upon such a construction project to begin with...one so inconvenient and disruptive, but with a big payout.

Most people, if they think about their roof at all, look at it and say "Eventually we will need to replace that."  But if it isn't leaking, or worrisome in some other way, you wait another year.  We have been in our home for 8 years...not sure how old the roof was when we bought it. I am grateful that we do not need to replace it this year. I hope to be grateful next year as well.  I hope to sell this house with the gratitude of many, many years of never replacing our roof.  If the eventuality of replacing the roof never came to me, I would be quite satisfied.

But, should we discover a leak, we knew that this was a possibility...a probability, in fact.  So, we call our contractor, and get busy.  Repair, or replace? 

I hope that the weather is dry, because we are doing a full tear off, exposing the rafters on this one. There are plans to rebuild though. We are thankful for the rebuild.  So very thankful.



Brent is happy, because he can finish the school year and enjoy all of the activities associated with the Kick-It fundraiser for pediatric cancer research that his school does every May.  He has been to a bake sale, a car wash, teacher dunk tank, a soccer scrimmage (boys vs. girls--girls won!) and next week has more events set up by middle school children.  If they make their goal again, they will have raised a total of $100,000 in four years, only working in the month of May. 

While there is some adult help, this is achieved mostly the effort and organization of children.  One of Brent's friends set up a website (heck, I couldn't do that) and a calendar of events.  There were scads of kids washing cars and baking cupcakes.  They are using their time and talent to make a difference.  They are using their collective numbers, with every little bit advancing the common goal.  It is a powerful lesson for these children, and one that I was impressed by, even before we were so personally invested in the cause.

I am grateful that Brent can participate in these things.  The timing of this surgery allows him to finish school, which is so important to him, and to attend 'Kick Bald' on Monday.  He challenged Lauren to raise $250 for the privilege of shaving his head in honor of kids in treatment, which has been a source of much teasing and fun between the siblings.  (I do not need to tell you how differently I felt about this as we worried about Brent's pathology last week, thinking he might soon be a child in treatment) 

Lauren baked up a storm, and made her goal...and then some.  I am so proud of her for thinking and planning.  She is grateful for the generosity of the donors...because while she makes a mean brownie, she recognizes that the charity was what was being supported. It will be a fun event, watching Lauren shave Brent's head at the school.  There is a sense of solidarity in the baldness.  Last year, when Brent had no hair, it was touching to see so many of his classmates sporting a shiny dome in his honor.  We are glad to be honoring other children this year, showing support in a visible way. 

We are looking forward to a time when baldness and cancer are not associated with children...or anyone for that matter.



Brent will be doing his Make a Wish next weekend. This is a wonderful organization that provides wishes for children with life threatening conditions.  Brent has dreamed for nearly a year and a half about what he would wish for, which has been a wonderful distraction from the many challenges that he has faced.  Many of his wish ideas involved sand or water, or a combination of both, which does not mix well with an open wound.  He wanted to wait until he healed, so that he could do this sort of wish. He waited, patiently most times. Eventually, we thought, he would heal and be able to do it.

But 'eventually' became far too theoretical for him last week.  He faces weeks in the hospital this summer and he knows that this surgery is not a sure thing.  He wanted to move forward with another wish.  He is going on a "shopping spree, " which mostly involves getting a computer.  He would like to learn how to design apps (?!?)  and feels that a laptop would be a good distraction while he is in the hospital.  He knows what this is like being isolated that way, and is using his wish, again, to make that difficult time better.


As I have been planning for this trip, I am struck with how different this is from the last time we removed his hip:

• There is no cancer to worry about, or chemo beckoning.  I will not be frantic about delays.  There will likely be delays.  I will be calm.
• Brent will be emotionally replenished and prepared.
• We know going in that it will be at least 4-5 weeks.  We can plan a visit with the kids in the middle of this because there are not restrictions for cold and flu. 
• The kids are out of school, so keeping things rolling here is simpler.  Alex is 15, and because he is home for the summer, can help with his sisters. 
• There are things that have fallen into place for us, like the fact that the chief of surgery from Bologna Italy, was recently picked up by MSKCC and put on staff...he has successfully done the surgery that Brent requires 12 times.  I am comforted by this addition.
• Dr. Healey, because he saw us just before his trip, has been consulting with the brightest in Europe about Brent's case.  We benefit from their experience and opinions, without needing a passport.
• In case I failed to emphasize it enough, we have no oncology pressure cooker.  I cannot say what a difference this will make going in. 

This series of surgeries is by no means a slam dunk.  It will be a long process and fraught with risk.  But there are things that I am encouraged by. Things that I am comforted by. Many things that make the challenge more manageable.  The timing of this eventually, is part of that comfort.

Walking in Manhattan

After starting the linens in the washing machine, I thought that I would let Brent sleep a bit longer at Ronald McDonald House. (One advantage of him finding sleep on the couch more comfortable than on the bed, is that I do not need to wake him to do the 'exit laundry'). I decided to return the wheelchair to Memorial Sloan Kettering that we borrowed after Brent's needle biopsy yesterday.  I threw my handbag into the empty wheelchair and set off, alone with my thoughts in the city.

This has been an emotional trip, and I am finally alone, without things that I actively need to do like when we were in the hospital.  There is anonymity in the city, especially one this large, and with the understanding that I do not know anyone here.  There is real temptation in screaming right there in the street...wailing to the heavens.  A plea for some mercy, a frustrated cry for insight, a bit of anger at God.  I think that it is ok to be angry with God once in a while.  I do not rage outwardly as I walk, but I am grieving.

My son Brent, who only a day or two ago (could that possibly be right?) expressed to me how he couldn't wait to be able to run again, how much he is looking forward to the freedom to play with Olivia in that physical way almost required of 5 year olds, will never be able to walk normally. We learned that he is in all likelihood, going to lose his leg, after a long year and a half of surgeries and rehab in an effort to save it.  

And that may not be the bad news.  We are now concerned about local relapse of his cancer.

For months, there has been starts and stops with physical therapy.  Concern and frustration nagged at me about the fact that we have not managed to establish a head of steam in his progress.  But, it seemed last week that we might have just turned a corner.  His wound was improving, and I was going to set up PT again for him, beginning tomorrow, upon our return to Ohio.  We turned a second corner here in New York however, when routine X-ray showed that the donor bone is dissolving.

I never saw that coming.

So now, the worry that I have had about infection for a year, has been transformed into my wish.  My fervent prayer is that we have been tamping down an infection for months, despite massive doses of antibiotics and antifungals, and that the infection has damaged this donor bone, degrading it to the point that it must be removed.  That is my new hope.

From an orthopedic perspective, the problem is severe, and the solutions are all unappealing.  But if the causative agent is infection, we have one sort of problem.  If it is cancer, we have much bigger challenges and more difficult "fixes."  

I walked, looking at the flower vendors, and food trucks setting up for the day. The constant movement of people, like a pulse, even in the early hour carried me along. I really love the city, for a country girl.

Along another line of thought, I spoke at length to my oldest son last night.  He, quite understandably, is struggling with this.  He offered up a string of ideas, solutions for this orthopedic problem that do not involve amputation.  "Couldn't you go with metal?  Could you use his fibula?..." He told me that he had loads of ideas, as he wrestled with the changes that Brent faces, that we face, as a family.

I explained to him that while it is not completely decided yet, amputation is what he should really be prepared for. I told him that Brent is not defined by his physical form.  But that this change, which is troubling to Alex, might serve as his own personal inspiration, especially if he has ideas.  Go into biomedical, and make the world better.

We all have hard things. It takes no effort to lie there, curled up in life and bewail our challenges.  Our job, I believe, is to turn those hard things into something good. 

I challenged Alex, that if he has ideas about how to fix this, he should write them down, explore them, find the problems that come with with the solutions (they are always there) and try to fix those problems too. If he feels passionately about this, he should do something about it, and try to help others.  I am trying to do that through my writing, using the hard things we have, and bringing good things to others, making it easier, in all hope.  

I drop off the wheelchair, having borrowed it overnight.  There is a family feeling about this, sort of like when I would take my parents car when I was a teenager.  The discharge nurse had encouraged us to borrow it (He had a needle biopsy only hours before, after all) shouting to the secretary at the desk as we left that we were taking it to RMH, feeling like like a sister of sorts.  Will I ever feel differently about this place, like when you step into your parents house after living on your own?  A bit of a guest, rather than like you belong there?  Should you knock?

I head back to RMH, up First Avenue.

A third line of thought, which I try to sort out...the people that have come into our lives.  I had shared with Brent that I believe that things happen for a reason, that there is a plan.  While God sometimes gives you hard things to do, he also sends you help along the way, guidance and support.  I see too many coincidences to think otherwise.  Lately, there have been people, who visit, and revisit my life in odd ways, at serendipitous times.  

Looking back, I sometimes understand what someone's purpose was in appearing at a particular time. But sometimes, I worry about the future when someone shows up.  I don't want the "help" that they might be offering, or the problems that they are best suited to assist me with. I fear what it might mean, and really wish that they would just go away.

For example, a doctor that has been particularly helpful to us in Ohio is looking for permanent position elsewhere, and unfortunately, has not secured anything as of yet.  He is extending his stay with oncology as a night hospitalist for another 6 months.  Until yesterday, I simply wished good things for him, and left it at that.  Now, that information carries a tinge of anxiety.  I do not want that sort of help, or those sorts of problems.  And I have a half dozen examples of this ilk to worry at me.

It is best not to look ahead in that way, I think. I remind myself that it is not all about me, or my family. And these sorts of things are not prophetic.  There are a multitude of purposes, and reasons, none easily seen or understood from this perspective. 

I have racked my brains, trying to figure out what all of the labs, and symptoms of the past 5 months add up to, in advance of the pathology which will take a week.  How would the CRP behave from infection, from cancer? But I am no doctor, and the doctors don't know.  We all wait.  I wait impatiently. Anxiously.  

I step into a coffee shop, my regular stop on this route. Brent and I were here only 2 days ago, grabbing a bite while people watching, and resting as the 5 block walk to Sloan was a lot for him to crutch. We didn't bring our own wheelchair to New York, and the thought had flitted through my head that day that perhaps I should arrange to return it, as we seldom use it anymore. Brent was looking forward to showing Dr. Healey how he could walk.  We had no idea how different that meeting would be from what we had imagined in that moment.

Brent is still sleeping when I return, an untroubled sleep. I put the linens in the dryer and suddenly it all washes over me.  I need to breathe.  And take one step.  One word.  One moment. One breath.  Then another of each.

I need to take the hard things and make them good.

We came here in solid clouds, that made the landing a leap of faith.  We leave in fog, which obscures the path right in front of us.  I am so grateful for the fact that we have an Angel Flight, so that I do not need to drive for 9 hours and focus on the immediate responsibilities of driving for that long, which are both too much and too little at the same time.  I miss my husband and my other children, and long to be all together.

We wait a week for pathology, to find out what we are doing.

We wait.

A Delicate Gift

It was a remarkable day.  A beautiful one, but one laced with fear, punctuated with shock, celebrated in jubilation, in disbelief…in grief. 

The day began as my mom and Alex left to attend a funeral.  One of Alex’s soccer coaches, a young man, only 20 years old, died very suddenly and unexpectedly.  I could not go with Alex, because I had appointments with Brent at the hospital, and am grateful that my mom could go with him.  Alex spent his day celebrating the life of a friend, and grieving the loss of him.  This family, who I do not know, is close in my prayers, and heavy in my heart.

Dan has been keeping me updated on the status of a friend’s newborn baby, the joy experienced at his birth less than two weeks ago has been replaced with fear as this little one battles meningitis.  He has had multiple spinal taps and they expect several weeks in hospital.  Even from the tiniest humans, there is the spirit to survive.  I think of this family throughout my day and send them strength.

Brent and I were at the hospital all day.  There was nothing earth shattering…a mammogram for me, and clinic visit for him.  We stepped out for a walk at lunchtime, meeting Dan in the sunshine.  Brent and I toured Case’s campus, enjoying the chalk scrawls of anxious students approaching finals.  The encouragement and humor displayed was a good thing to see.  The mix of flowers, and mix of old and new architecture on campus was beautiful, and somehow calming.  We went into the Peter B Lewis building, designed by Frank Gehry, which Brent really enjoyed. 

At clinic, I called about the new treatments that Brent is to start, but learned that we cannot until insurance approval has cleared.  They said that it can take up to 10 days.  I am a little frustrated with this, but I know that there are bigger problems to have.  We have had bigger problems.  Others currently have bigger problems.  I try to balance patience with persistence, accepting what I cannot change, doing what I can, and finding the ever elusive “wisdom of knowing the difference.”

Dan texted me and said that Brent and I should go have a date, one that does not involve a hospital.  So, we did.  We went to a movie, on a Monday night, which is unheard of, and was fantastic.  Brent had dreamed of seeing Iron Man 3 that night, and woke up bitterly disappointed in the ending, which was one of the fun things we talked about as we walked.  So we went to see it together, just the two of us.

When we returned home, Dan told me the shocking news that Jina DeJesus, Amanda Berry and Michele Knight were all found alive after a decade of being missing.  Amazingly, joyful news.  It is unimaginable, both in that they are all alive, but also because they have been hidden here in Cleveland all along.  Unimaginable to think of what those years must have been like for those young girls, what they lost, how they will have to mend and rebuild a life.

Life is a gift, albeit a fragile one.  Even a broken one sometimes.  But out of the brokenness, out of the striving for survival, out of the rebuilding, and even out of the loss, we show that it matters, that it has value.   

And there is beauty where there is love...from the encouraging chalk scrawls on the sidewalk of the university to the hug of a neighbor-savior, and everything in between.

Time management

One of the recurring themes of this journey is the paradox of time.  Nothing makes time tangible quite like a newborn baby, or a cancer diagnosis. 

With a baby, I always say to the parents "Do not blink" because as we all know, even when you are paying close attention, it goes by very quickly.  Time, I have said, becomes almost a physical thing, something that you can feel slide through your fingers when there are children around. They learn so much, and grow so fast, so much change in such a short period of time...you can nearly see time tick, watching their many achievements. 

When there are not children around, one Christmas is not so different from another.  But put a child into the mix, and suddenly it becomes 'the Christmas when Olivia was learning to walk…'   'When did Alex begin taking trumpet, because he played for us that year…'   Children help to measure and identify a time.  Cancer does this same thing.  'The Christmas of Lauren’s brain tumor…'  'The Christmas before Brent’s surgery…he had hair…hmmm, must have been the muscle flap…' We talk of such things on equal terms in our house.

I have often been fooled, when I see a friend after a long period of time.  Somehow, I expect that their children ought to have maintained their age during my absence.  But they do not, much to my chagrin.  Instead of aging only the year I grant them, they grow the 6 or 7 that have actually passed.  Children do not lie about time, and if anything, they round it up, proudly proclaiming: "I am 6 and 3/4!"  or if like Alex, you are close getting your drivers permit: "I am 15 and a half!"  The rest of us round it down generally speaking.  For the record, I am "just over 40."

With cancer, we have been at this “nearly 2 years,” rounding up like a child.  It feels like 2 decades sometimes.


At the hospital, there is that "hurry up and wait" silliness that we have been able to manage for the most part.  We hustle to get where we are going, knowing that there is a fair amount of waiting involved in the process. There is peace in that knowledge, as well as preparation in the form of a book or other distraction, instead of always wishing that hour away in frustration. We spend a lot of hours waiting...far too many to wish away.

But that 'hurry up and wait' mentality exists for many with regard to their children.  "It will be better when they sleep through the night….or when they are potty trained...or in school full time...or driving themselves places...or at college..."

Or in relation to a career: "Once I make partner, or finish this big project, or get the promotion...."  I have heard these types of comments for my entire adult life, which makes me sort of sad for the person saying them, that they cannot be grateful or contented with their current situation, waiting for some magic moment to “live.” Failing to enjoy the journey, so focused are they on the destination.

Ambition and aspiration are not bad things. And it is not like I wasn't occasionally wistful about the toileting independence of my offspring, particularly when I changed a 'very special gift' from a 3 year old.  I certainly looked forward to the benefits that this later time would offer, but didn’t hinge my happiness on such things.  I don't think I ever wished away those toddler days, waiting for the unpleasant or challenging parts to be over. 

Similarly, I was pretty grateful for Brent to get the chemo in, for the opportunity for him to beat cancer.  We tried to make the most of those hard days, and to find some laughter, and joy. Not always easy....and we were not always successful.  While we very much looked forward to chemo being over, we did not wait for it to be done so that we could start being happy.

I think the same goes for what we are doing now.  It has been challenging for Brent, as he continues to have wound issues 10 months after his chemo was completed.  I continue to acquire more medical knowledge and experience, both of which I could live without.  But I am not going to wait until it all passes, in order to be happy. I am trying, to varying degrees of success, to accept and appreciate what today offers, as much as I wish it were easier for our son.

Sometimes, there are poopy diapers, because that is just part of the deal. And, to use a Livvy-ism, "These are not my favorite."

I am tired, as we are about to embark upon another long treatment regimen (hyperbaric oxygen), most gratefully, not chemo, but one that is a logistical challenge nonetheless.  If I were waiting until we were "done" until I planned for fun things, we would never do anything.  Over the weekend, I have been setting up some fun things for the kids this summer, and I hope that it will work out.    

With cancer, there is a sense of time being a physical thing, a presence.  It forces you to be present, and deal with only what is in front of you, what that particular day has to offer.  You have an awareness of time like you simply do not before diagnosis.

Perhaps this is because there is the undeniable truth that you wake up to every day:  That no day is guaranteed.  Also, the simplicity, or relative simplicity that today offers, it is a fragile gift. It can become much harder, much more complicated at any given moment.  Our hope lies in it becoming easier, God willing.

I have described how our calendar sort of ends at the next round of scans...a point where we check in with our medical parole officer to see if we are fine to continue living on the "outside."  Heavy in the implication: if we are fine to continue living.  Checking in with them as often as we do, well, that keeps it all very, very real. 

And each day is a tangible gift of time, which I accept with deep gratitude.  The stinky diapers and waiting rooms included.