I’ve been thinking a lot about patience these last few weeks.  It’s something we work on from a very young age, yet I’m not quite sure it can ever be attained in its purest form.  At least not by me.  Not if I’m honest.

And I tend to be honest right here.  Which some might think is an odd place to make that choice, but that’s for another conversation.

We learn that patience will help us get things faster.  If we are patient our parents are more likely to bend.  If we do what we’re told and wait, things are more likely to go our way.  That ice cream cone has a better chance of landing in our hand if we’ve exercised patience than if we’ve badgered.

When we get a little older there are less overt rewards for patience, yet it’s still a necessary virtue to master.  Those without patience are deemed immature.  If we are overly demanding it endears us to no one.

I know this.  I know all of this.  And generally I am a pretty patient person.  But, I must tell you I have thought long and hard about the amount of patience required to navigate Cowden’s Syndrome and its ramifications, and it seems to be an inordinate amount.

I get it.  I’ll say it a thousand times to anyone who will listen.  Of all the “rare disease” cards to draw, this is by far among the better ones.  I know of the suffering of so many who are diagnosed with torturous terminal diseases.  I know of so many who would trade places with us in an instant.

If the PTEN mutation causing Cowden Syndrome is found early, a lifetime of vigilance can often ensure longevity.

It’s just that with that vigilance, you need to much darn patience.  So with my gratitude, I sometimes battle frustration.  Which is ok.  Because I am human.

In the last 21 days I’ve been to Manhattan 4 times for doctor’s appointments, and another 2 to Long Island.  The average roundtrip for these appointments is about 5 hours.  5 hours to travel in insane traffic regardless of the hour.  To Manhattan the distance is only 13 miles and I can not tell you how many times 2 hours hasn’t been enough time to be on time.

But, I should never worry, because they are rarely, if ever on time.  And while I understand the myriad of reasons doctors run late, still the patience sometimes runs thin.  Especially when we are anticipating another traffic filled journey home.

The patience wanes when I call offices and 2 days lapse without returned calls.  I struggle when I have to spend hours explaining what test I need insurance authorization for, only to have the person speaking to me become hysterical with laughter, presumably because they are being told a joke.  I’m not against laughter.  I actually like it.  But, when I have to now cancel the test ordered by the doctor I never wanted to see in the first place, sometimes I just can’t find it funny.

When I call for an appointment and I’m given a 3 month wait time.  And an appointment smack in the middle of the work day.  I lose patience.  I don’t expect special treatment.  And its a good thing I don’t.  But its sometimes hard to stay patient when you’re juggling over a dozen specialists (each) and a full-time job, and academic honors.

So in the summer I try to be even more patient.  But by default I have to get a lot of things done in the summer.  We are actively trying to shove in some fun, in between a boatload of appointments.  I try to squeeze in time in pockets of my day to regroup and relax.  I try not to cringe when my Facebook news feed is full of play dates and day trips.  Why shouldn’t it be?  I don’t WANT anyone else to have to sort through this mess.

Friday is Meghan’s second uterine biopsy.  PTEN mutations tend to cause most of their cancers, although not exclusively, in the thyroid, breast and uterus.  The fact that she hasn’t hit her 13th birthday yet, and this will be her 17th round of operating room, general anesthesia procedures is taxing.  But, we will be patient.  We will be patient tomorrow when we wait for the time of Friday’s procedure.  And we will be patient on Friday as there are often delays.  We know.

We will be patient over the weekend as she adjusts to the discomfort and pain from the procedure.

We will be patient while we wait.  And wait.  For the critical pathology report.

We will be patient while she heals enough to return to the pool.  Her happy place.

Patiently we will continue to navigate the road of vigilance, peppered with mines that need to be avoided at all costs.

We will pretend, each time we meet a new doctor, that they are the most important.  We will not even try to explain the full complexity of the scheduling of life.  They have their own problems.  They don’t need to hear about ours.

When we each face our own lives we know the challenges presented to us.  I don’t want any of yours.  At least I understand the task at hand here.

I have gratitude that I am given the opportunity to allow my vigilance to matter.  I am patient.  Mostly.

Usually I take a deep breath.  A bunch of times.  I’ve learned patience gets you farther.

So if some days are harder than others, I ask you to have patience.