A week full of thoughts of surgery and support

We find ourselves quite unexpectedly at home.  Brent's first surgery went so surprisingly well that they decided that he might spend the next couple of weeks in Ohio, rather than the Big Apple.  There is an abundance of blessings to be found in this statement.  

I am responsible for giving him IV antibiotic three times a day (with a 2 hour drip for each dose) until we return for his next surgery.  I am praying that this antibiotic regimen clears the infection.  None of his cultures grew anything, despite the graft being obviously infected, so we are hoping that this measure of going broad in spectrum, as well as deep in coverage (6 weeks) will wipe it out.  Whatever 'it' is, which is unknowable at this point.

I finally sorted out things with MSKCC, and our plan it to return to NYC in a bit over 2 weeks for the definitive surgery.  It is unclear at this point, exactly what form that will take, but the surprises have been good for the past month.  We are praying that they continue to be good.

As I waited for the appropriate time to hook Brent up to his IV (or unhook him...I forget which) on Tuesday night, I checked in with my LFS friends online.  The Internet is a blessing, especially for support in something like Li-Fraumeni.  With an estimated total of 400 people in the US with this genetic disorder, I would not have likely had the opportunity to meet anyone like us, with the same challenges and similar worries.  We would be essentially alone.

I remember when we initially learned about LFS, back when Lauren was first sick, some 8 years ago now, I had read about families with LFS in medical journals, but those were written for clinical use. There are no names, of course, and details about the patients are limited to age, sex, diagnosis and outcome.  The stories of these families are devastating from a medical perspective.  It was a very tough read, with little encouragement to be found, especially with the worry that we might be just such a family.  There was no sense of warmth, of hope, of connection.  It was written for a researcher, not a patient... or a parent.

When we discovered nearly two years ago that we in fact had the p53 mutation, initially, I went back to reading articles in medical journals, when I had the time. Fortunately, (??! ...that doesn't seem quite right!) I was pretty busy just helping Brent through chemo and then surgery...and follow up chemo, dealing with Lauren's brain tumor (which by comparison, seems like an acute issue)  and generally trying to keep the wheels from falling off.  I didn't have much time to seek further information or support...or offer it.

The omnipresence of Facebook and social media has been something that I have been very slow to embrace.  I am not sure why some folks find it necessary to share photos of their lunch...when it is utterly mundane fare from Taco Bell. But, it is not all bad.  In the last 6 months I have stumbled into a private support group of similar "mutants" as we refer to ourselves.  And consequently, this rather Amish girl has become grateful to Mark Zuckerburg, for indirectly making possible these connections with fellow LFS patients and, by extension, this support.  

Talk among my LFS friends on this particular evening centered on the various reconstruction techniques and options after a mastectomy, with much advice being offered.  I must confess that the technical talk is all a bit beyond me, having zero experience with breast cancer, and in all hope, I should like to keep it that way.  But several things struck me.  First, should I ever find myself in Alabama, for example, I absolutely know who I would stop and have a drink with, knowing that all of my cancer and genetic jokes would be appreciated.  These ladies have a wicked sense of humor.

Second, if I found myself in California, I know who I would rely on for advice on hospitals or doctors. This group has a wealth of information and medical experience (so wish that were not the case). But, they are willing to share their personal trials in very generous ways, in order to help others find the solution that is right for them.  

 

Reconstruction, for example, while it might seem like an obvious choice if available, might not be right for some.  Or the timing might not work, given recovery requirements.  How it is achieved technically, if chosen, is varied as well...and makes a big difference.  These considerations can be sorted through, with folks who have a practical understanding of what it all means.  That sort of advice is invaluable.

With LFS, we have a host of considerations that others do not, and likely cannot fathom...in medical treatment, in family dynamics, in finances, insurance, life perspective...the ways that cancer invades your life is not so different from the way it can take over your body.  I really try to keep it in check (umm...as I blather on and on about it here).  I clearly have varying degrees of success with this. These ladies have similar understanding of this effort at balance, and I am grateful to them for their openness and honesty about all of the consequences.

Besides, in having them scattered across the world means that at 3 am, should I find myself awake and worried about something, someone is likely to be awake somewhere.  And support, understanding and reassurance is easier to reach for, when you know that you are not disturbing someone's sleep.  I have been glad on more than one occasion, that Hawaii has a 5 hour time difference.

I woke up Wednesday morning to hang Brent's antibiotic, thinking about a dear friend who was to have surgery that day.  I was hoping that she had clean margins and was praying for clear nodes. This was for her second episode of breast cancer, not relapse, but rather a different kind of breast cancer than her original, nearly 10 years ago.  Double primary...it makes me want to swear. Kind of a lot.  And she does not have LFS, incidentally, not that it even matters.

My own surgery had been scheduled for Thursday (as if I could afford the time for such recovery) I cancelled it when we thought that we would be in NYC for the summer.  My ovaries will keep for a bit longer, and my geneticist currently has some other tissue to work with for a while. I hope to keep her busy this fall with more samples, and come up with some answers for what I should be doing. 

But presently, I am just very happy to be back home.  I am glad to be with my family, and to step away from the hospital scene, as much as is possible, with a fridge stocked with bags of Vancomycin rather than bottles of summer Corona.  I am trying to have normal conversations, about other peoples vacations, or children's activities, remodeling projects, because our take on these subjects is a bit different:  We vacation at Ronald McDonald House, my daughter is at oncology camp this week, and our remodeling project this summer is in my son's hip. 

I find that I make OR reservations more often than dinner reservations these days.

We will get closer to normal, but just not this summer, apparently.

When in Rome

As I leave RMH, I stop and watch the people on 1st Avenue while I have my coffee.  It is warm outside, even in the shade of the tall buildings and large trees.  I wonder how the trees survive among this sea of concrete and humanity.  There are some tables outside and I happen to find a vacant one.  

I watch as New Yorkers go about their day.  While I am no fashionista, I look at their shoes, kind of a lot. They take their footwear pretty seriously here, especially when you consider how much they walk.  I remember seeing a billboard with Brent once, acknowledging as much "NYC: Tolerant of your beliefs.  Judgmental of your shoes."  Pretty accurate, on both counts.  I privately smile at the memory.

Dan texts me to say that he has a video of Brent to share.  Only 5 days post op, with no hip bone, he is standing without crutches, passing a weighted ball back and forth with the physical therapist.  This goes on for some time, and I am astounded at his endurance.  He has no pain.

I call to check in, and the boys are doing well.  They encourage me to enjoy the afternoon and take a walk.  Feeling indulgent, I do, especially as I have just been joined at my table by a couple with a folder of information about neurosurgery.  I think of our daughter Lauren, and remember how daunting the anticipation of that nightmare was for us, and I opt to give these folks some modicum of privacy, such that can be had here.  I leave them with a silent prayer.

I have always seen familiar faces on the street, but they are usually people who resemble friends from home.  I have begun to see familiar faces in the city...familiar from here.  I see one of our night nurses (wait, it is noon...what is she still doing here?) I know that the city is big, but maybe not quite big enough, or maybe we are just here too much and now know more people.

NY Presbyterian is across the street.  It is a monstrously big hospital by comparison, and Sloan-Kettering isn't exactly small.  I often look at it and smile, thinking of how someone once told me that as big as MSKCC is, it is all cancer, only cancer.  If you are in labor, you had best waddle your pregnant self across the street, because they wouldn't likely know what to do about it here.

I decide to walk around over there.  It is a beautiful building, abutting Cornell Medical School (or, I suspect, the other way around). I shake my head, thinking that Dan might mock me.  On my break from the hospital, I am touring another one.  But, because I have looked at it and wondered for so long, why not? 

After leaving the hospital, I walk past the Rockefeller University and am curious about the research going on there. I learn later that it was founded by JD Rockefeller in 1901, the first institution dedicated to biomedical research to understand disease.  They have a different way of organizing their labs, seeming to offer interaction between disciplines, uncommon at other institutions.

I think about my father for some reason, and it occurs to me that I am becoming more like him in many regards. I realize that I am pretty comfortable everywhere: here in the city, back in Ohio, talking about the theoretical and abstract ideas of research, living within the highly practical realities of family and children.  Plunk me down anywhere, I think I could be happy.

My father began as a truck driver, and later became an attorney.  He had season tickets to the Browns when they were at the old gritty stadium, as well as to the world class Cleveland Orchestra who perform at Severance Hall.  He found satisfaction in it all.  But while my father was generally introverted,  I am rather social. I am surprised with this recognition and am a little pleased with the similarity.  And the difference.

I often wonder what he would make of my life.

I take a footbridge to the NYC green space.  It is visually calming with the East River flowing and Roosevelt Island as a backdrop.  There are hedges of roses in bloom and people walking. But with cacophony of traffic on the FDR, it isn't quite as serene as it looks from a distance.  I am surprised how much noisier it is than it was outside the Rockefeller Institute, or anywhere in Cleveland's metro park system, dubbed the Emerald Necklace, which I recognize as a priceless gem, in all truth. 

There are pros and cons in every situation.  While the vast numbers of people here provide an energy, a creative synergy in all sorts of areas (medicine, science, art, music...) that same population can be oppressive, and make privacy or solitude quite elusive.  When space is of such a premium, strangers will join you at your table outside a coffee shop, which might offer an interesting conversation, but also makes a quiet moment rare.  

Sometimes, I think that the reputation that New Yorkers have for being rude is in part because they do not generally look at or engage with others in public. (The other part of this reputation I credit to the insane driving)  This avoidance of eye contact might result from an effort on their part to offer privacy to others, or perhaps to maintain their own privacy, avoiding even the connection found in sharing a gaze.  Here, human company is near constant, and the bustle relentless.  Our humanness, I think, calls for occasional moments of stillness, which is difficult to find in the city.  I find quiet moments in my mind as I walk, lost in these thoughts, even as others mill around me.  

I wonder now, if I bothered to look at those people around me, in my effort to be alone with my thoughts, or did I avert my gaze, creating that same New York zone of privacy.  Perhaps, I am not all that different, despite my Midwestern upbringing.

I wonder.

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.

So you are going on a hospital vacation...here is the brochure

As I think about spending the next 6 weeks here at Memorial Sloan Kettering, I at least have some experience to draw from.  I have done medical tourism before, and had extended stays here in NYC.  These would be the helpful tips I would offer...the Zagat guide for pediatric cancer.

1) What to wear?

Do not consult your local weatherman, because it absolutely does not matter.  Hospitals are really cold.  They generally keep the thermostat dialed down because warmer temperatures foster germ growth. Inhibiting germ growth is a goal which you will soon appreciate as your child's counts become the barometer for your emotional stability.  However, I am a freeze baby, and if we are headed for the "inside," I wear long pants and long sleeves.  Even in July.

With the knowledge that I was returning with Brent for another extended stint in hospital, I said that I needed to pick up a couple of more long sleeved shirts and yoga pants...comfortable enough to sleep in, yet reasonable apparel for early morning conversations with doctors. (Ortho, in particular, keep very early hours and are the first to make an appearance, usually around 6am.) Brent teased me.  "Really mom? You dress like it is winter.  All of the chemo kids will make fun of me!"  He is lucky that I resist wearing footie pajamas. If he weren't going to already be on bed rest, I would ground that kid!

2) What to bring?  

Obviously, there is the medical stuff.  Scans, recent labs, a list of current meds, especially if you are not going to your regular hospital...you know the drill, or will in very short order.  This stuff becomes second nature, and the hospital your second home.  

During treatment, some things remained in the perpetually packed suitcase that lived in my foyer for the ever present possibility of making a mad dash to the ER.  It was like the bag your are supposed to pack and have 'at the ready' late in your pregnancy, only with less to look forward to in using it.

So, in the suitcase, was always a spare phone charger (which is my link to the outside world), extra change of clothing for Brent and me, toiletries, and a pillow for each of us.  Hospital pillows are just horrible (sorry, no way around that apparent universal truth) and nothing makes it feel less hospital-ly than a pillow and quilt from home.  I would advise washing both the pillowcases and quilt, immediately upon discharge and putting them directly back into the suitcase, so when the neutropenic fever comes, you are at least comfortable for the 2 day stint that such an event mandates.  You can mutter about the fever, rather than the fact that you don't have a toothbrush.  You will likely mutter one way or the other.  Might as well be comfortable while you do it.

3) What to do?

Ok, now I wish that I knew how to knit, or did needlepoint or some sort of portable thing of that ilk. I am writing this from the 15th floor of Sloan-Kettering, where they have a patient recreation center...flower arranging, a pool table, a piano, pottery throwing...a host of things for patients to do. I bet that I could sew up here, but I am rather limited in that we are up here only because Brent is currently in surgery.  Once he is out, we will live on M9.  I suspect that I might be able to sneak up and borrow a book from the library.  They fortunately have a big library.

I am really hoping that Brent's recovery is smooth and boring...such that I might plow through some good books uninterrupted, while he does the same. But this has not been my experience in the past.  There are many interruptions, many questions, conversations, and honestly, my mind sometimes cannot focus on what I am reading.  That is a function of worry, as well as the environment.  No way around either one, so I do not fight it too much.  I have very low expectations in this regard, which kind of works for me.

I write, which helps me to process all of this.  I try to stay connected with my kids at home, avoiding peak wifi use to Skype, as the connection is frustratingly bad at such times.  I scout for the best place to make a phone call...one that affords a bit of privacy as well as decent cell phone reception, both of which are in short supply in most hospitals.  

4) Where to eat?  

First thing, you should know where to find a decent cup of coffee (It is what makes my world go round. I view this in the same vein as the rules that mandate adults to take the first puff of oxygen on the plane, before administering it to a child)  Coffee, is critical.

Food from the cafeteria becomes tiresome and expensive.  Every hospital manages food storage differently, but finding out how to bring outside food in will be helpful for you.  Especially for your child, as chemo does its devilish work on appetite, bringing in whatever sounds good at the moment is helpful. (and with chemo, even the most agreeable child can become as fickle and changeable as a 3 year old) There comes a point where it is understood that all calories are good calories, and whatever you can get in (and keep in) your child is a victory. 

I was advised by a dear friend who went through chemo for breast cancer, that the last meal you eat before chemo, might be ruined forever, so you might want to avoid your favorite meal for the moment.  I cannot remember what it was for Brent, although I suspect it might have been pizza...which has been very slow to recover its appeal, post chemo.

5) Where to stay?

Figure out how the floor works.  Most pediatric floors provide a cot, or a pull out chair for one parent to stay overnight with your child.  Where you use the bathroom and take a shower might not be so obvious.  Every hospital has different expectations for parents, and the etiquette is different from hospital to hospital.

For example, at one, you might leave your child alone in their room for a time, or if you must, overnight. (We never did, but had roommates, children, who were alone for chemo. I don't judge...parents have to work in order to maintain insurance, have other children to care for...and we have been blessed with amazing support.) In other hospitals, even leaving the floor for 45 minutes requires arrangements for a surrogate.  It is important to know what is expected, regardless of what you are personally comfortable with. 

This is different than the week-long chemo vacation.  This is more like a transatlantic cruise on the Queen Mary...better than the Nina, Pinta, or Santa Maria, sailing in uncharted waters.  But still a long trip.  I hope that I packed well. 

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.

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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.