Life-Work Balance for a Stay at Home Mom.

I am ready for the weekend.


Work has been busy.  I am in charge of two divisions: medical and domestics.  In the past several weeks, I have fairly handed over the reigns of the domestic division to Dan.  He, I should point out, has a J-O-B of his own, with drawings, and meetings and deadlines.  But, he has been pulling double duty, saint that he is, as I have fairly abandoned my domestic responsibilities.  This is because the medical division is hopping, unfortunately.


I had a business trip to NYC.  Our meeting was fantastic.  Dr. Healey was smiling and satisfied, which is most reassuring.  We chatted about a few things, and as we finished up and parted ways, we were told that Brent's next follow up would be in a year. We have never gone such a length of time between appointments, which is a solid victory.  Brent was fairly skipping on our way out.


We went to a movie in celebration.  By the time we returned to Ronald McDonald House a few hours later, my phone rang. University Hospitals was calling.  They found melanoma in the sentinel node on the left side. Brent needs more extensive surgery. And treatment. For a year.


Go ahead and swear, because I certainly want to.


As we travelled back to Ohio, our Angel Flight pilot chatted with me a bit while Brent snoozed in the back of the plane.  He told me a story about how pretty early in his career, he was very driven, but was cautioned by an older friend about the value of punching out and making family a priority.  This friend spent Christmases with the pilot, rather than with his own family, because, as he confessed, the kids grew to hate him.  It made quite an impression on the pilot, who sold one of his businesses and cut back on his hours, with absolutely no regrets.


So, my job has been busy this week: travel, paperwork, correspondence, research, phone calls....  I may have mentioned that I have not been terribly engaged prior to this trip, and rather distracted.  Dan, ever my rock, has been planning a very important birthday party.  Olivia turns 6 tomorrow, my favorite Valentine's gift.


I woke up this morning, and thought about all of the things that I needed to do, which is a lot. Dan has put together plans to make Olivia's birthday a special one.  Considering the fact that I missed it entirely 2 years ago, and only arrived in the evening for it last year (both times at MSKCC) I should be right on board with him, a partner in making it special.  I have been very busy with work, no different in some ways, than the friend of the pilot.  Granted, I am not driven in my 'medical job' by the desire for material things, but from Olivia's tender perspective, does it matter?


So, this morning, I snuggled with Liv as I woke her up for the last time as a five year old, giggling and teasing.  We took our time getting ready and I drove her to school.  When the kids get off of the bus today, I am going to punch out for two days to celebrate the gift of family, and particularly the gift of my youngest.


And I am very grateful for my first Valentine, who drives the train when I disappear either physically or emotionally.  Dan means the world to me, and to our family.  He has always had a good life-work balance. I keep finding my way back, because of him.

A moment of Thanks and the spirit of Giving

This is the week when the seasons blend a bit, a concept best illustrated by the still life in front of my neighbors house:  A giant pumpkin covered in snow.  This same snow will hopefully hide the fact that we have been derelict in gathering up our leaves.  Ehh, those leaves will still be patiently waiting for us in March… or May, depending upon the weather and our ability to get to it.

So, Thanksgiving was a week ago.  It is probably my favorite holiday in its simplicity and pureness.  You get together with your family, you count your blessings, you eat a really nice meal with people that you love and watch a comedy together, or maybe a bit of football. Perfect and complete!  I received an email from an old friend who wondered what our Thanksgiving answers would be to the age old question "What are you grateful for?"  More to the point, what am I not grateful for these days? 

My children show No Evidence of Disease, which is something that I will never, ever take for granted, with the understanding that we will always live in three month periods of grace.  But even better than simply dancing with NED,  Brent is making strides in PT, becoming stronger and more balanced.  I am trying to do the same, both literally and figuratively. 

We have had the good fortune to have met some incredible people over the past two and a half years.  I am obviously very grateful for the medical professionals that have helped us on this journey… they are far too numerous to count. 

But outside of the medical setting,  we have met others who have used their time and talents to help make it possible for us to get to this point, or certainly make it a bit easier.  For example, pilots from Angel Flight have frequently flown us to New York.  This gift of time and resources has made it possible for Dan to conserve his sick time, saving it for chemo and our various surgeries, while Brent and I traveled to NYC for follow up appointments. This generosity and kindness has mattered a great deal to our family and will never be forgotten.

We have benefitted from other charitable organizations.  I cannot adequately express how humbling, and touching it is to have complete strangers extend such courtesy and caring to my children.  At Ronald McDonald House, which offers discounted housing near to the hospital, volunteers will play games with the kids. Some companies sponsor dinners, and their employees will come in and prepare meals for the families who spend long hours in the hospital. 
 

The Make a Wish program provided welcome distraction for Brent while on bed rest, as he fantasized about what he might wish for.  When he anticipated another long stint in a NYC hospital, he used his wish to open up his world virtually, with a laptop computer.  Absolutely everyone involved in Lauren's wish trip was incredibly kind and created an opportunity for her that we could never have, which brings tears just thinking about it.   All of this was possible with the donation of airline miles, of volunteers time, and of financial contributions by companies and individuals, none of whom know us personally.  Amazing.

Kick It and Flashes of Hope help us in a larger sense, as potential beneficiaries of research that these organizations help to provide. But in a more direct way, our children feel empowered through these charities, by helping to raise awareness, as well as much needed research dollars. 

The stylists and the photographers that volunteer with Flashes of Hope donate their time at the hospital and have an enormous impact.  They help children to feel special and capture moments of beauty, tenderness and love.  While the photos are black and white, the experience is a bold splash of color in what can be an otherwise grey hospital existence.  It is a remarkable thing that they do, and it makes a difference for children with cancer on multiple levels. We were once again touched by people who we did not know, directly helping our family

I have met scientists who dedicate their efforts to understanding cancer and genetics.  I am grateful for their curiosity and for the dogged determination that such investigation requires. Research is methodical and thus, very slow to bear fruit.  The patience required would likely disqualify me from such pursuit.

On a more personal level, our friends have been exceptionally understanding of how flaky we can be.  I have made plans, and abruptly cancelled more times than I can say.  We have failed to attend weddings and other important events for people that matter a great deal to us.  It is a journey of long suffering, and patience, being a friend to the Ramers  And we have been blessed with some amazing, long suffering friendships.

I count all of these blessings like a bountiful treasure, reminding myself of how fortunate we are.  This week, I have also had several reminders of how difficult life can be.

A faraway mutant friend messaged me as she travelled to a military hospital in Hawaii.  Her daughter, married to a serviceman, was diagnosed with breast cancer and was having a double mastectomy this week.  Her other daughter recently had two brain surgeries and she travels back to the mainland next week to manage the chemo and radiation schedule that they are still devising for her. A third LFS positive daughter, had cancer while pregnant, as did the baby. It reads like fiction, but this is LFS reality. My heart goes out to Joann Million, as nothing about what she is doing is easy. 

I thought about what I might do to be helpful. I actually have a dear friend in Hawaii that knows Tripler Hospital all too well.  However, this is because Jen is currently getting treatment there for metastatic breast cancer and is hardly in a position to help.  The Mallory's have four beautiful mutant children, which can only be a constant worry and scheduling nightmare, medical and otherwise, but a blessing nonetheless.  I very much would like to be in Hawaii, and not because it is paradise, as I teasingly refer to it. 

I learned of the passing of Jacob Tholl, a father of 5, after a 19 day struggle following an electrical accident at work. My heart is heavy as I think about how this family's holidays are so different than what they had anticipated. 

My friend lost her father after a long battle with Alzheimer's this week. While the holidays are supposed to be joyful, they can be difficult as well. My prayers are with all of these people this holiday season, the juxtaposition of struggle in its various forms against the backdrop of Christmas and tinsel.  It is hard sometimes. 

I finally managed to work out the scans for the kids.  We do not intend to spend time with doctors until January 6th. I am trying to relax, and to enjoy our Christmas without an immediate concern about cancer or major surgery hovering over it.  For the past two years, that worry hung out with the angel atop the tree, also gazing down on us, but with a far less benevolent look.  It is hard to shake that feeling that a shoe might drop, having experienced a tornado in a shoe factory. 
 

 

As I saw someone cynically point out, only in America do we gather around the table in November to express thanks for all that we have, and exactly 24 hours later learn that some people have been trampled to death in an effort to get more.  Makes you shake your head.

But also in America, the spirit of thanks bleeds into the spirit of giving.  And while everyone speaks a different love language, I believe that this time of year gives witness to a conversation that is dominated by love.

When we offer the gift of our talent, like the little drummer boy, wonderful, beautiful things begin to happen. Everyone has a talent, some sort of gift to offer: the hairdressers at the hospital, photographers, pilots, those skilled at cooking or baking, something as simple as taking the time to read to a child, or to visit with a veteran, singing in the streets if you have such inclination...the spirit of giving does not need to be commercially driven, and does not, most thankfully require money. 

It is giving of yourself. 

Once you reflect upon your blessings, think about how you might turn and transform these gifts, in order to help others.  It might be financial, it might be a service, it might be kind words. Because it is not what we have in this life that is important, but what we do with what we have been given.  I feel like we Ramers have been given so much.

I met with a hospital administrator this week who said to me, "As much as we accomplish, I learn how much more we need to do for our patients."  Rather than being overwhelmed by this notion, he was inspired.  I seek to follow this example, and to do as much as I can, with what we have been given.

And to do it joyfully, compassionately and wrapped up in love.



Should you want to help the Million family that I mentioned above with travel and medical expenses, there is a link below:  

https://www.giveforward.com/fundraiser/yf23/help-the-million-s-fight-li-fraymeni-syndrome?fb_ref=1364692&fb_source=message

The Mallory family accepts help here: http://helpinghandsforthemallorys.blogspot.com/

And finally, donations may be sent to help Jacob Tholl's family here:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=PQFK3TDSBSN4S

 

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.

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.  

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.