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.

In the Begining...

So, Dan has been saying for a couple of weeks now that I need to give sort of a background of our story…a thumbnail of how we got here, because some on this blog are not on Caringbridge.  In truth, I have been dodging this task (but in fairness, it is not like I have been eating bonbons and watching reality TV or anything so frivolous)

So, how did we get here, in 10,000 words or less?  Uggh….Bonbons and reality TV is sounding pretty good about now. 
 



Our cancer story began in late 2003, once upon a time, when Dan and I were younger, much less medically experienced and simply enjoying our family.  We were busy, I thought, with three small children, but a ‘good busy’ and we had a blessed life. 

That whole frame of reference shifted, just changing Lauren’s diaper a bit before Christmas.  I noticed that she had begun to get some hair…down there.  I had a 15 month well visit on the calendar for her and so I planned to mention it to our pediatrician when we went in. 

We didn’t see her regular doctor that day at the practice (it was nearing  on Christmas), but the substitute pediatrician blamed it on hormones passed  to Lauren from my birth control pills, because I was still nursing.  Lauren was my last baby, and Dan still brought her in to me first thing each morning.  Feeling guilty and responsible for harming her, I never nursed her again.

I did, however, call my OB, to let him know (after all, he had prescribed the pills knowing that I hadn’t completely weaned her yet).  He asked me to bring Lauren in to see him that same day.  After examining her, he encouraged me to see a pediatric endocrinologist by the first of the year and to get some answers (What?  Getting into a specialist might take months, even without the holidays) He was emphatic that my nursing her had nothing to do with this, and strongly suspected some endocrine issue, maybe with the pituitary gland. He warned that Lauren might continue to develop, even start menstruating (What??!!! She is in diapers!!)   He told me not to worry, but to get some answers.  He also offered to help me get the consult, if I had any problems getting in.  First of the year…

This whisper of urgency was a message from God.

The specialist we saw initially examined her, but just wanted us to come back in 6 months.  He wasn’t even going to draw any labs.  My OB’s words stayed with me, and I pushed.  Finally, the endocrinologist agreed to draw blood, but assured us that he had seen this before, not to worry, and that we would see him in the summer. 

He called a few days later, with results that he did not expect, but that he failed to explain, despite our many questions.  He ordered another test, again, with assurances that knew what it would likely be…although he never explained what that precisely was. We repeated this pattern several times, for several different tests.

Finally, by early March, I took Lauren in for the latest test, an abdominal ultrasound.  Dan and I had decided that after this test, we wanted a new doctor, because this man, while very smart, was not a good fit for us.  We needed to understand what he was looking for, and what he was ruling out. 

We decided that Dan would take half a day off of work, to be with the boys and I would run in to Rainbow for the ultrasound, which was non-invasive and easy.   In the darkened room, I chatted with the tech, asking questions about what we were looking at, because when I was pregnant, I could never tell the difference between a foot and a face, much less determine who the child looked like.

“  … so, that is her adrenal gland?  Interesting…”  On to the other side.

“Is that her other adrenal gland?”

No.  You apparently are not supposed to be able to see it. This information was starting to take root in my mind.  But the tech then said that we needed a full bladder to look at her uterus or her ovaries, I forget which.  Could I maybe get her to drink some juice and fill her bladder over the next half an hour and she would be back? 

Alone in the room, we looked at the colorful mobile that hung above the examining table, read a book to Lauren, plying her with juice (I doubted that this would really work…in my experience, a full, uncomfortable bladder for a baby means an empty bladder and a full diaper).  I considered the two adrenals, the discrepancy in size and thought about how Dan would laugh at me for the fleeting thought that it was a tumor.  How ridiculous, because she was a baby.   We would certainly be laughing at this mama by dinnertime for being so silly.

But half an hour later, when the tech came back, she was not alone.  There was a full posse of medical backup…oncologist, social worker, radiologist…I forget who all else, but from my current perspective, I suspect the rest were underlings in tow (until we were well into this journey, I did not understand that there were levels of doctors, and doctors in training…all white coats are not created alike.)

There was a mass of people in the room. 

There was also a mass, in my daughter. 

 

They were admitting her, because one type of adrenal tumor causes dangerously high blood pressure and she could stroke out.  Did I need to make some calls?  The social worker would mind Lauren, and guide me over to admitting.  We would then be going to the oncology floor. She was going to be sedated for a CT scan.  I was informed of these things, told of this plan, not asked about it.  I think that this was probably a very good thing, having it all decided for me, because my brain had entirely stopped functioning.

This was the moment that I realized that I would never be going back to Kansas.

The social worker went with me and Lauren to a bank of pay phones, where I called Dan ‘…come meet me in pediatric oncology.  Yes, that means cancer.  Get someone to stay with the boys…my sister, or a friend in our neighborhood…but you need to come.  Now.’   It became a blurry nightmare…

Horrible call.  Horrible day.  To this day, I cannot walk past that bank of payphones without being in that moment, stomach lurching.  And they remain there for me to walk past, nearly every time I am in the hospital.  It never gets better.  Those pay phones take me there, every single time.

As it turned out, Lauren did not have the blood pressure issue with her tumor.  She had another, rarer, kind of mass (3-4 cases in 10 million as I understand it).  We were discharged after a sleepless night on RB2, one that I have next to no memory of, except that I left with a pounding headache, likely from not eating, not sleeping, and crying an awful lot.

While we waited a week for surgery to remove the tumor and entire gland, I thought about how fortunate we were that this happened at her age.  Because, had she been a bit older, she would have been potty trained, and I would not have noticed her symptoms so easily.  Her ravenous appetite, I chalked up to an impending growth spurt.  Many children get vaguely moody.  The one thing that really got my attention was the pubic hair.  And had I not seen it, especially when my OB would have reason to weigh in on it, well, we might have been in a whole ‘nuther boat.

A week later, when we came in for surgery, I remember changing her diaper and looking at her belly.  She looked so pink, so happy, so perfect.  I could not imagine handing her over to the surgeons, for them to cut her open, because she appeared so healthy.  It was hard to remember that she was sick, and it was very serious because she was a happy child, in no pain.  I really wished that a bikini wax would have fixed it. 

The surgery took several hours.  It felt longer, because as I now understand these things, it always does.  But Lauren did well.  Within days, we ended up chasing her around the unit with an IV pole on Rainbow 2, wheeling her around in a wagon.  She played in the playroom incessantly, partial to a kitchen set that they had there.  We were especially encouraged by her bounce, probably because we were absolutely spent with worry.    

Clean margins, completely resected.  When the pathology came in mixed, they explained that there were several factors that were encouraging…but the most concerning, was that it was pleomorphic, meaning under the microscope, there many different looking cells, which suggested an aggressive tumor. 

For this rare type of cancer, Adrenal Cortical Cancer (ACC), there was no effective chemotherapy available.  We could only wait and watch.  They would scan her, and do blood tests, measuring the testosterone level.  If the cancer came back, wherever it raised its ugly head, it would produce testosterone, which was what caused the pubic hair to grow, and the appetite.  This was something that we could detect at very low levels in her blood, likely before it produced any symptoms.  This is how we would know.  And then we would go looking for it.

When we came home, Dan turned to me, and said that he had to leave for a bit.  I was surprised, given that we had just returned home from a weeklong stint through the bowels of an emotional hell, the likes of which I could not have imagined.  I was personally ready for a nap. 

When he returned, his mission was clear.  He had been to Toys R Us and picked up a kitchen set for Lauren.  He noticed how much she enjoyed the one in the hospital, and really wanted her to have that same enjoyment at home.  It was a celebration of her recovery, and reward to her for being such a trooper.  This is just how my husband is.  I love him for it, and weep at the thought of how much he cares and looks out for our children.

When we came in to RBC for our first outpatient visit after surgery, the oncologist had a long talk with us.  She let us know that given Lauren’s rare tumor and young age, we should consider genetic testing.  The overwhelming odds, given the ACC, favored her having a genetic predisposition to cancer which was even more rare than the very rare tumor.  It was called Li-Fraumeni Syndrome.  It is a failure of the tumor suppressor gene p53, so she would more likely develop other cancers, different cancers.  All cancers.

 And if she had it, we should consider testing the boys.  And ourselves.   There was a 50% chance that we were also carriers.  Would we mind sending her tumor to St. Jude’s for testing?  ‘What were we going to do with it?  Put it in a jar on the mantle?  Of course, send it, by all means.’   

This, incidentally, might have been the very beginnings of my stress driven snark.

So, that day, we went from being cautiously pleased with Lauren’s surgical recovery and the mostly positive news out of pathology, feeling that we could beat this, to learning that we were likely only beginning our troubles, which could be vast. 

The genetic testing takes time, and for a month, I could only look at my children and instead of entertaining typical maternal thoughts, imagining the people that they would become (What college would they go to? What will their spouse be like?  Would they have children of their own?  What career might they take up?) I worried about a life in hospitals and the cancers that the three of them might develop.  It was a very long time in limbo. 

Internet research, for the record, is not a good pastime at such a point in your journey.  LFS is no picnic, I rapidly discovered.  It runs in families, and is devastating.  There is no cure, and only recently was there a way to test to see which family members would be affected by carrying a mutation in their p53 gene.  I cannot imagine how, in the absence of science, families processed this, making sense of the frequent and returning cancers in their family, of every variety.  They must have felt cursed by God.  They might still.

When we returned to RBC a month later, the genetic results still were not back.  The oncologist, knowing our anxiety, kindly called down to St Jude’s and got results faxed over.  She excitedly told us that we were somehow on the skinny side of the odds…Lauren did not have the mutation.  This was a fluke…  Bad luck…A lightening strike…  Pretend that this never happened.  Carry on.  Congratulations!

Jubilation and disbelief doesn’t begin to describe how we felt.   In retrospect, we probably should have stuck with disbelief, but who doesn’t grab on to good news when it is offered?  No one gets a second opinion on good news.

And as we progressed, drawing labs every month, with reassuringly low testosterone numbers and scanning her every three months with clean CT scans, the likelihood of the adrenal cancer returning decreased.  My anxiety on scan day never did, but statistically speaking, if the cancer were to return and spread, it would have likely done so within the first year.  We scanned her for 18 months and followed her labs, mostly for my own peace of mind, for several years at increasing intervals.  We were moving on.

But despite this generally positive trend, I frequently wrestled during this time with odd things that happened with Lauren.  Changes in her appetite had a sinister feel to them, a potential symptom of the cancer’s return. (And what child doesn’t have these sorts of changes as they grow?)   I tried to tamp down my worries and reminded myself that we had it beat.  And it was only a lightning strike...  A fluke...  Bad luck...

I am ashamed to say that more than once, I panicked as I changed her diaper…spotting a black hair or two on her nether parts.  The sick feeling, as my stomach dropped and my mind raced to very ugly places, fearing that the cancer was back…well, it fortunately disappeared upon closer inspection. 

I cursed our black dog Max, and my apparent lax housekeeping skills.  It was only stray dog hair down there, hair that easily wiped away.  Yes, this happened more than once, but my reaction was always the same.  I can laugh about it now, but in that moment, you know deep in your soul, that it can all change just that quickly.  And while the hair is easily wiped away, the fear is not.

So, I vowed to vacuum more diligently, to enjoy my blessings, and to try, with much effort, to relax.  I do recognize the paradox in that statement, but it was an effort…one that was required in order to make a new habit. To relax.  I was determined to not allow this episode to change our happiness.

Back in the day, we didn’t have cell phones and voicemail.  We waited for important calls, chained to our home, paralyzed with the wait.   When there were lab results, or scan results, this didn’t help me in my vow to enjoy my blessings, or offer any assistance with my effort  to relax about the results.

 And while my time on the phone with doctors and nurses naturally had to be a priority, Lauren was oblivious of this because of her young age.  The boys, and Alex in particular, were not oblivious.

Alex had questions, as all children do.  Especially on occasions when I was talking on the phone to various medical folk, and I would scold him and Brent impatiently, for squabbling over a toy, interrupting and distracting me from a rather significant conversation.  (They were 4 and 6, so, it is not surprising that they would occasionally need outside intervention, a peacekeeper, or negotiator)  But, I felt that I had to explain to them what was happening in our family and why they had to be especially good while I was talking on the phone to doctors.

Many people would try to protect their children from the hard reality of this all.  If I could, I probably would have tried.  But, for me, it seemed that Alex’s little world would make most sense if he understood what was going on.   He would understand me, and trust me.  It was a philosophical position, one of honesty, despite his young age.  I have never backed down from that decision.  And it has not always been easy.

After I explained that Lauren was sick, and that I needed to talk to her doctors, who were trying very hard to fix her up, Alex asked me if she was going to be all right.  He asked me, point blank, if she would die.

It was quite the loaded question out of a six year old. 

I was honest.  I told him that I didn’t know.  And it was perhaps the hardest sentence that I have ever been required to spit out.  It broke my heart saying it.  Almost in tears, I nearly choked on the words, and the awful reality of what those words represented.  Speaking the truth to him, I could no longer deny the possibility in my own mind. 

Not to spoil the ending or anything, but I have had to say these words more than once to Alex.  And it does not get any easier; you only think less about cushioning the truth in some fluff.  Because, God forbid, if it didn’t work out, which I could not control, I could not have that absolute travesty compounded by Alex’s mistrust of me and my words.  I knew that if I lost Lauren, I would also lose Alex, unless I was very clear and very honest in that particular moment. 

This was instantly distilled in my mind on that day, sitting on the steps of our little home, looking into his questioning eyes.   

I have never looked back.  On that point, at least.

 

Pediatric Cancer 101: Advice from the trenches

While, I know that most people do not prepare for this, and I am not thinking that there is a big market for a book titled “What to Expect When your Child has Cancer,” some might happen upon this early in diagnosis, or someone else, who has a bit more time to surf the net, might pass it along. I hope that it helps.  These are the lessons that I would offer at this point. I might offer “Advanced Pediatric Cancer” at a later date, but I really hope not.

1) Every cancer, and every cancer story, is different.

There are many roads that lead to the pediatric oncology floor (although most roads, fortunately, never go through that neck of the woods, with LFS, we actually take a freeway there.) How you got there is different from everyone else.  And once there, keep in mind that your child, her cancer, and how she responds to it, is unique.   This may be reassuring, or unsettling, depending upon what is going on around you. 

For example, while my son recovered from surgery for osteosarcoma at Memorial Sloan Kettering in NYC, he roomed with two different young men, both who were there for relapse osteosarcoma, which is a very tough road to be on.  We were there, just trying to heal from the surgery, in order to head back to Ohio and finish some punishing chemo.  The delay troubled me, and I feared that just like these young men, Brent’s cancer would metastasize.  Literally waking up every day to visions of my greatest worry was very difficult, and these were amazingly kind people.  But no matter; no one wants to peek behind that curtain, literally or figuratively, at that point in treatment.

I repeated to myself, like a rosary, “That is not Brent’s story.  The successes of osteosarcoma are not parading around this hospital for my emotional benefit.  They are out there, living their lives.  We will be as well.”  It helped some when I would remind myself of this.  But it was still incredibly hard.  

Easily, the most detested line in our home is “Everybody is different.  It all depends…”  Get used to that line, or some variation of it.  It has become a punch line for us at this point.  But, unfortunately, at a time when we most wanted something, anything, to count on, this was the best answer that the doctors could give.  And despite my great frustration, and the very palpable urge in the moment to shake the docs until their teeth rattled and an answer fell out, I do in fact appreciate their honesty.

Because everyone understands that the big questions like “Will this chemo work?” warrant this sort of response.  However, even seemingly simple questions, like “What side effects should we expect?”  “How long will his recovery take?” are truly unanswerable, as we soon learned.  Eventually, you begin to preface your questions with, “You likely cannot say but…”  When you start doing this without gritting your teeth and experiencing a rise in blood pressure, you know that you have become a hem/onc veteran.  Lesson one: learned.

2) Telling others

You will have to tell others.  In all likelihood, a lot of others.  We found Caringbridge to be an indispensible tool for communicating our journey with friends, family, and coworkers.  I do not work outside of the home, but Dan does, and as exhausting as it was being at the hospital, it was equally exhausting, emotionally speaking, for Dan to have to repeat the latest events over and over to his concerned coworkers.  Early on, I had many long, and repetitive conversations with understandably concerned friends, neighbors and family.

But, when I began to write online about what was going on, these conversations became shorter, less repetitive, and interestingly, we actually had more connection with people, many who might otherwise not have known our struggle.  With the most recent information available about how Brent was doing, the conversations would often start with a statement like  “I was glad to read that Brent enjoyed a good weekend home” or “I am sorry that you were in the ER again last night…”

There is fear, I believe, in asking about how things are going for someone in a health challenge, when you truly do not know.  So, this tool has been empowering for the asker, as well as for us.  Others know what kind of conversation that they are getting themselves into, and proceed accordingly.  And with the feedback we receive, we know that many people are praying for us, rooting for us, and traveling with us down this road.  This has been incredibly encouraging, given how long and bumpy the road has been.

When I initially had to tell people of our journey, it was a hard thing to hard to say.  Sometimes, the responses were hard to hear.  And once you child’s appearance is altered, however temporarily (i.e. hair loss); the questions from the public at large begin. 

At the grocery store, for example:

“I know exactly what you are feeling.  My grandfather had prostate cancer.”  Once I stopped screaming in my head about how the two are nothing alike, and incomparable at nearly every level (prognosis, age, treatment requirements, relationship…), I tried to keep in mind the spirit and intention of the comparison: That cancer is hard and really scary, and you are not alone. 

These are comments made by people, simply trying to relate to us.  Limb threatening osteosarcoma on your 11-year-old, on the surface, seems to be in a completely different league from a stranger’s grandpa’s aging prostate.  But if it is your prostate, or your people, the fear and the worry is the same.  I tried to focus on that.  Besides, if I only opened my mind and heart to others with limb threatening cancer on their child, well, I would have very few friends, and very little support.  I would be very lonely, indeed.

Another response, one that you might not expect, is the wide eyed look of a deer in headlights, right before the person in question disappears from your life altogether.  Fortunately for us, we have not had too terribly much of this, and this has been far outweighed by people rushing in to help our family, so the loss of such people who cannot handle this has not been so noticeable.

3) Information, internet and anecdotal evidence

You want to know the latest information about your child’s cancer. I completely get that.  You are sleepless and scared.  Rather than phoning a friend in the middle of the night, while your child is most hopefully asleep, but sleep eludes you, you decide to use the free hospital wifi to surf the net and do some research.

I have had dear friends advise me that “nothing good happens after midnight.”  While this would be cautionary advice for ordering another round of drinks at a bar, I submit that this would also be good general advice for internet research as well.  While the net offers clarification on information that maybe you couldn’t quite digest during the day, I cannot caution you enough about the angst that comes with reading medical information on the internet without live backup in the form of explanations from your child’s doctors. Be aware of the site you are on.  I would return to and reread the first section about “every cancer is different.”

Along the same lines, people will share their cancer stories with you, offer advice that they saw on television or got off of facebook, however remote or unrelated to your child or their cancer.  I would go back to the second section on “telling others.”  They want to relate.  What they say does not necessarily relate.  But you have to recognize and appreciate the effort.

Statistics.  I am in no position to speak about statistics, mostly because I have long ago rejected them.  Having a hideously rare genetic predisposition to cancer and 3 episodes of pediatric cancer in our nuclear family to date… well, stats cannot comfort us.  So, why should I let them frighten us?  Why should I pay any attention to them at all?  I had a friend once say of statistics, “Even if you child has 98% odds in his favor, it is meaningless to you if he is in the 2%.”  Her child had less than 10% odds, and for the record, is healthy over 5 years out. :)  Like they say of politics, it is all local.

4) What can I do?  How can I help?

Latch on to these words.  Hug the person who says them.  Embrace, and accept this, despite any reservations that you may have.

I had a very hard time with this notion of accepting help.  But for my other children, I knew we needed help.  They needed rides to practice. They needed distractions. They needed to know that they weren’t alone, even though we would be gone, sometimes for weeks at a time.  I had no idea how hard or how long this was going to be, or how tired I would become.  Otherwise, I would have gotten over my hang up about accepting help…much, much sooner.

Initially, the notion of having meals arrive at the house from friends and neighbors was hard, because I felt like this would be surrendering in a way, allowing cancer to change who we were.  I was the lady bringing the meals, not receiving them.  What did this mean if I was receiving them? 

But people wanted to help, and in a helpless situation, where they cannot fix what everyone most wants to be fixed, loved ones can ease your burdens in other areas.  They help with what can be helped.  They drove. They cooked. They took my kids on special dates.  They sent Legos and activities for Brent in hospital.  They sent cards.  And I know they prayed….because they told me about it.  I was comforted by all of this.

It is a long road, with long to do lists, most of which cannot be delegated.  Anything that can be, allow to be.  You have to prioritize your time, your energy.  Let someone else clean your house if they offer.  Or cut the grass.  Or cook, or change your oil.  Let them.  So that when you are home, you have the time and the energy to read your child a book, snuggle close on the couch and watch a movie together, whatever comforts and connects you.  I suspect that cleaning out the gutters is not included in ‘meaningful time’ at home…so if it is offered, accept.  Gratefully. 

And if you are reading this, and want to offer help to a family in need, try to do the thinking for the family.  Show up with your rake, or your snow shovel, or a casserole that could be frozen for another night. Take the kids to a movie, or the dog for a walk.  Whatever your talent (or capacity for the mundane) be specific in your offer, because while we received many very genuine offers of “whatever you need,” I couldn’t think enough to even see such a need (unless it was a raging fire right in front of me), much less match it with the person best suited for the task. I was barely capable of ‘yes’ or ‘no’ responses to specific help offered.

We received gift cards for gas, and pharmacy, and groceries.  Even with good insurance, things add up fast, in ways we didn’t imagine, far beyond me giving up my small business. We received notices of donations to cancer research, support of cancer organizations in our name.  These were a way for people who didn’t know us personally, to help support us nonetheless.  They were all very meaningful.

5) When it is over, it is not over

For so long, we counted the days until we finished chemo, then until Brent’s counts recovered…the magic day when we would leave oncology behind and we would get our life back.  I do not want to be discouraging, but, for the record, your life will never be the same, and the considerations of cancer continue long past chemo. I am not saying that you should not look forward to that day, but the change is not as dramatic as you might imagine, which can be disappointing. There are scans, and labs and worries and well, just stuff.  Brent is now 9 months out from chemo, but we have yet to go a week where I have not dealt with oncology for some repercussion of his treatment, and never mind the nonsense that we have for our ‘genetic concerns.’ 

Straight up cancer is a long road.  But it is much longer than they will tell you on the day that you get your treatment “roadmap.” I am in no way complaining about the long road, because the alternative is unimaginable.   And if you have ever been on a pediatric oncology floor, you are very grateful for the opportunity to be tired from a long hard slog.  However, I would recommend re-reading the section about accepting offers of help at this point.

You will get through this. It will be hard. And horrendously unpredictable, which is utterly exhausting.  But you will find support, probably from unexpected places. And you will never look at the world in quite the same way. These are the absolute truths I can offer.  Beyond that, as in all things in life, it is up to you.  I send you love, wishing you health, peaceful moments, and the wisdom found in the serenity prayer.   

Terror

Today was an average day, meeting with doctors and planning for tomorrows hospital visit for Brent...stepping into the pet store to pick up some replacement fish for Lauren's tank.  But when he got home, Dan turned on the news to the awful events in Boston.  I was reminded of something I wrote a while ago, but didn't know what to do with it.   It seems like today is a fitting time to share ...I suppose my analogy will extend to Bostonians now as well in this world gone mad.  Prayers for them all, on this Patriot Day.

How is Brent feeling today?  Awful?  Terrible? Horrible?                                                                2/25/13

At turns, I am struck with the elasticity of our language and annoyed with its imprecision.  In an effort to explain what this journey is like, I am forced to use words.  But the words I am forced to use, at times, seem inadequate, watered down, or somehow, altogether inappropriate. ‘Terrible’ is a word that I have used to describe how Brent feels when he needs a transfusion.  But it really isn’t a good word, and I try to reserve it for times that properly reflect its meaning.

After we first discovered Brent’s tumor and while we waited for the doctors to develop a plan, now, that was a terrible week.  I do not mean ‘turrible,’ the way Charles Barkley says it when Kobe Bryant throws up a brick.  “That is just turrible, really turrible!” 

I mean it in the fullest, most original sense, like Marie Antoinette and the French Revolution; they-are-coming -for-my-family-with-pitchforks-and-there-is-no-stopping-them- kind of way.  I knew immediately that day, that Brent had an uphill battle and the Ramers had a big genetic problem.   I absolutely felt to the marrow of my bones that cancer was coming for my whole family like a mob of peasants armed with pitchforks and sickles.  And furthermore, there was nothing that I could do or say that would stop it.  The despair and the fear and the helplessness that I felt was completely primal.  It was utterly terrifying.

That sense of terror, well, we are blessed in this country to not have a common experience that really captures this feeling, except perhaps for those who live in NYC. (Maybe this would explain my kindred feelings toward New Yorkers)  They no doubt understand, having lived through the 9/11 attacks.  That must have been truly terrible-- a terror-filled experience. 

‘Terrorism’ in the American heartland was not felt in the same way.  I am not in any way saying that we were not afraid on that day, nor that we failed to care about or understand the impact of the events happening in New York, Washington and Pennsylvania.  But by virtue of not having seen it up close, of fearing for our own immediate safety and that of our loved ones, of smelling the fires, of walking amongst the wreckage and living with the scars, literally and figuratively, well, we might imagine, but not truly know the terror.  It was witnessed on television, but not experienced.  I believe that there is a difference.

I wept on 9/11 as I watched.  It was horrifying to watch. And I was very fearful.  But it was not terror.

And at this point in time, 11 years later, ‘terrorism’ has become a political buzzword that is thrown around fairly carelessly, in my humble opinion, splattered over campaign ads and sprinkled into sound bites.  The word, so overused, no longer captures the fear and helplessness that was felt that day…the sudden mistrust of our own population because ‘they’ were hidden among us… crazy enough to fly planes into buildings, and so eager to kill us all, that they cared not a whit about their own welfare.  (The analogies with cancer here are rife)

I am not critical of our arrival to this point as a nation, simply making the distinction. No one can live in a state of constant terror.  Our bodies cannot long withstand the onslaught of adrenaline, and as a society we naturally have become inured to the notion of danger from within.  We are watchful, wary and try to be prepared.  But we have to go on.

I suppose that I am no different, because I am not feeling like Marie Antoinette these days, despite the continued threat.  The danger is still here, but we have no hope of running back to the safety of Austria, understanding that we carry the threat with us, actually inside of us.  (Marie almost made it with her family, fleeing for the border)  The flight or fight response was in full play for us back then, during our ‘time of terror’ that awful, terrible fall when I was so full of fear. 

But we Ramers are now standing our ground, ready for a fight, vigilant and watchful, with pitchforks of our own, torches lighting up the dark places.  We have become the hunter, rather than the hunted, but are desperately hoping never to find anything.  Ever.

And in the meantime, I am afforded the luxury of being perplexed about how to best express how Brent feels. 

Crappy. 

But red cells will help.

Stage fright

We went to the 5^th grade talent show last night. 

After a busy day, one that topped off a busy week, we headed up to the middle school for the show to see Lauren’s comedy act.  Dan and I settled into our seats and looked over the program…37 acts.  37!!  I was tired, and thought that I might need to ask for double parent points for this one.  Usually, such petitions are reserved for soccer games in adverse weather.  However, the rehearsal on Tuesday was over 4 hours long.  I was keeping my options open.

Actually, they called it a Variety Show, and there was quite a variety.   Naturally, there were musical acts, dancing, singing, piano…but the variety in style, the diversity in expression, it was pretty impressive.  And these were 5^th graders, performing in front of a pretty big crowd, I thought.  I might have mentioned that there were 37 acts.  Some acts had more than one child…so, even if you only had the support of two family members per child (and there was a lot of support), well …you do the math. 

The opening act was a boy who sang “God Bless the USA.”   Fair warning: I cannot help but well up at Brown’s games every time that they play this song, because full grown men, many painted orange, in every ridiculous dog costume imaginable, will stand, remove their hats and place them over their hearts or wave them over head.  And many of them are half drunk.   But, even so, they are cognizant of our blessings as a nation, and the sacrifices of our servicemen.  I have frequently found a moment of poignancy, adjacent to the dawg pound.  

 So, last night, this boy’s microphone didn’t work for the first half of his number, but he sang on.  He was not too terribly flustered when a tech came out to adjust it mid-song.   I was astonished at his tenacity.  I do not know if know whether it was the song (I have a history with it, as I have mentioned) or the way that this young man marched on with his duty despite the challenges, in a song that celebrates duty and honor, but I was moved.

A couple of acts later, a friend of Lauren’s sang ‘The Climb,’ which I was unfamiliar with, but Lauren later told me was a Hannah Montana song.  (I am not that cool, and never have been).  In case you aren’t this kind of hip either, I will give you a shortcut to the chorus:   

There's always gonna be another mountain

I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose


I have spent quite a bit of time in the mountains lately: driving, skiing, flying…and our lives over the past year and a half have been one giant trudge…mostly uphill.  With LFS, we might just be living in smack dab in the middle of the Sierra Madres.  This young lady stumbled at one point with the words, but recovered beautifully.  I was once again moved.

Lauren did a comedy routine, and did a great job of it.  I cannot imagine getting up in front of a crowd and hoping that they laugh, but Hollywood was comfortable and confident.  In her jokes, Lauren poked fun at herself, which I consider a life skill.  Dan breathed a big sigh of relief, because we had not heard her practice in nearly a month.  She had a ball!

There were many wonderfully executed songs and dances…children showing their remarkable talents.  I enjoyed them, and marveled at the way that these kids can get up on stage, often alone, and move or sing, and do it with such confidence.  I am in awe of it.  And it is an experience that will serve them well in the future.   I am more than a little envious at their self possession.

But one thing that struck me more significantly was the fact that that there were many acts, where it was clear that one partner was more accomplished than another, rather mismatched in artistic terms.  These were partnerships based on friendship, more than on performance, girls who wanted to be with their friends and delighted in doing something fun together.  The dance might not have been perfect in technical terms, but the friendship clearly was.  And that made the dance all the more beautiful, joyful, and a pleasure to watch.

Lauren told me on the way home that one of her friends was pretty upset about a mistake that she made in her song…the one that I found so touching.  We talked about the fact that it takes courage to get up in front of all those people, and offer the gift of your performance, of your talent.  Perfection might be what you want to offer, but the real gift is your openness, your vulnerability, of being honest, even in your imperfections.  What you put out there, giving it your best…that is the real gift. 

How it is received, well, this has nothing to do with you.

I received many unexpected, and unanticipated gifts last night.  And in turn, I am inspired to offer my openness to you, in all of its imperfections.

I am clearly not smarter than any 5^th grader.  I am learning from them.  All 37 acts.

Catching up

So, we were blessed with clean scans on both kids on Tuesday.   The lesion in Lauren's brain continues to improve.  Brent had an unremarkable chest CT.  These are the most delicious bits of words that I can imagine stringing together...and I take great joy in doing it.  I keep saying it over and over in my head: "We are good here, we are so blessed!" 

We celebrated, and let out our collective breath, one that we did not necessarily know we were holding.

I worry before scans.  Some preoccupation is unavoidable and just part of the deal, as the verdict approaches.  Some things on my 'to do' list (which, for the record, is always very, very long) really do not make sense to do until we have scan results, like rearranging some appointments in NYC, for example.  Currently, we have an appointment in May with Dr. Healey and one in July with Dr. Cordeiro.  Given the travel considerations, (it is 450 miles) it would make immense sense to combine them, and go once, in June,...unless of course if we have an oncological issue, and would need to go sooner. I had to put that task off, until we could see where we stood.

Elective things are caught up in this tangled mess as well. Do I sign up Lauren and Alex for summer swim team?  Do I commit myself to a sand volleyball league? I have forms to fill out for oncology camp for Brent and Lauren.  Olivia should do safety town this summer... Hmmm...better wait on these a bit as well. 

So, such things are put on hold.

What I have discovered though, is that I am not always so discriminating these days. I put off doing many things prior to scans, for no discernible reason.  I suspect that it is a general feeling of being stuck or paralyzed that carries over.  Because regardless of the medical results, we are going to need clean underwear...so why have I failed to do the laundry in a week?  Paying the water bill is not contingent on clean scans, yet there it sits, patiently waiting.

At the hospital on scan day, I can not focus on anything more mentally taxing than "Words With Friends," during the moments when I am just waiting.  The kids bring books with them and plow through them.  I end up reading the same page over and over, and give up.  It is a criminal waste of time, when the backlog of books that I want to read is so long, but the vague fog in my head allows for nothing better. 

I have been laughing at myself all day for this, as I scurry around, try to catch up and get it together.  Chastising, because to catch up on laundry alone is brutal.  And I have done this to myself.  Silly girl! 

But, while I put away groceries, lump some laundry, and find my checkbook, diving into the pile of papers I have simply tossed on my desk since before the kids and I went to DC, I hum a little tune in my head.  And I repeat over and over, "We are good here, we are so blessed!"

Because we absolutely are. 

I will try to do better next time, because for us, there will always be scans, every 3 months.  So, it is worth the effort to better manage it.  And maybe if my water bill is paid in July when we do this again, I can focus on a good book.





 

Keeping it together

I have to assume that I generally manage things pretty well, by virtue of the fact that we are plugging along as a family. The saying in our house is "If Mama isn't happy, then no one is happy!" This is probably true. But, we Ramers are all pretty happy, generally speaking, so I will consider this to be my personal barometer.

That isn't to say that I never struggle, or that I am never worried, always keeping the family apple cart of emotions upright, only that I usually manage to keep my worries in their place. The future, and all of the goodies or horrors that it may hold, it is for another day... for another version of me to either enjoy or deal with. This is my philosophical position...usually.

Over the holiday weekend, I really struggled, and it took me a while to figure out why. Brent now has two spots on his abdominal incision that have opened, a potentially infected ingrown toenail, and undefined hip pain...whether from PT or an inflamed hip, well, that is anyone's guess. The thought and possibility of doing another 'clean out' surgery in New York is understandably unappealing, but not what had me crawling out of my own skin.

It took me a while, but I figured out that what had me all bejiggedy, is that we are backed up against scans for both kids. These are predominantly brain tumor and osteosarcoma follow up scans, not the big LFS scans, although we have a couple of those thrown in for good measure. So that I am clear, understand that I have nothing concerning in either child, nothing that worries me about a new oncological problem. Absolutely nothing.

But, were Brent in particular, to have an oncological issue, the incision, the hip, and even the toenail could all be a problem, of varying severity and consequences. This had me rather worked up over the weekend. To no good end, I might point out.

God bless my husband, who helps keep me in line. We had planned on me taking the kids out of town for a couple of days over spring break, because he is still trying to build up some time at work. On Tuesday, while I played volleyball with my friends, he booked us lodging outside of DC, picked up some car snacks and library books...and the kids and I left in the morning. He made it easy, even when skipping this trip was tempting, and kind of appealing, actually.

But, when I begin to beat myself up a bit for occasional irrational thoughts and run away emotions, I keep in mind that when we first began these scans, we picked up Lauren's brain tumor, which we never saw coming, and set the stage for my rather emotional reactions to them. The visceral fear that I have, that something will show up, completely out of the blue, it is at least founded in reality.

6 months later, the good vibe from clean scans lasted maybe 6 weeks...and my worry began, lasting 6 weeks until the next set. At Christmas, I was unsettled for about a month before scans (we had a lot going on), but the good glow of their reassurance lasted for nearly 3 months. If I am down to only 10 days of angst in anticipation of these scans, I will call that progress. I am going to cut myself a little slack.

Besides, even if there were some sort of problem to be discovered on Tuesday, there is nothing that I could do about it today. Staying home, we could look at more snow. Spring wasn't coming quickly enough for Olivia in particular. So we met spring half way. The cherry blossoms are slowly beginning here, daffodils and violas blooming...the promise of warmth and renewal, evidenced in green shoots and the absence of mittens.

So, we have enjoyed visiting the Smithsonian museum of Natural History, the Air and Space Museum, and sculpture gardens. Tomorrow we will fill our day with some more that the city has to offer, playing it by ear, enjoying the sights and each other. When we return sometime on Saturday, I will listen to Lauren read to Livvy in the back seat, hear Alex and Brent discuss the merits of dark elixir in Clash of Clans (I have no idea what it all means, this secret language of video games!) and delight in these observations again.

Such moments may be fragile and precious for us, but in reality, they are for us all. We just happen to have more frequent reminders of this fact. I try to keep that in mind as well. As we breathe...and live, finding love and joy in as many moments as we are given.

We welcome your good thoughts and healthy prayers on Tuesday.

Much love,
Ann