Saturday, July 27, 2013

Shared Parenting

My geneticist emailed me yesterday with the good news that she has figured out a way to pull the DNA from paraffin block of breast tissue, removed from me four years ago.  No, I do not understand, yet, what that all means.  I do know that this was a problem, getting the DNA out, and one that she has apparently solved (It is easier to achieve from a fresh or frozen sample, as I understand it.) I will get back to you about the details when she and I get together and chat in a few weeks.
Thinking about this, it occurred to me, that what we do here is complicated.  This could be explained by the whole cancer experience.  Heck, that statement could easily be justified by the simple fact that Dan and I have four children.  But I am talking about genetics.  Genetics and cancer are daunting things to try to understand, and even more so to explain. 

We can super-simplify things and say that we have a bad cancer gene and because of that, we get cancer.  But that really doesn’t explain it sufficiently, on any level.  Medical, emotional, relational…the list goes on.

You likely do not consider your genetics much, but they do influence the way that we move in the world, more than we think.  Aside from determining how much product I really ought to use in this humidity (but don’t) to tame the ‘snakes in my hair’ as Olivia likes to say, genetics in subtle ways define us, and nudge us in particular directions.   And we seldom think about it much, as our cells divide millions upon millions of times, even as I sit here writing this. 
If you are lucky, you find that your genetics combine with your passion, such that you can become a world class runner, for example.  When they match up, it is easier to find success.  If you have a passion for running, but have a less than stellar genetic make-up, you might have to overcome your genetics with really hard work.   My passion of late, my obsession perhaps, has been helping my children beat cancer.  I would be the latter example, that while this may be my passion, I certainly need to overcome my genetics.

Research indicates that children from two parent families fare much better, in a host of areas.  This is not surprising, given that when one parent gets tired, there is a back up to step in and keep the youths from acting up.  Once in a while, mom stays out late at book club, but Dad makes dinner, handles carpool and the kids still brush teeth.  If Dad works late or wants to golf all day on Sunday, mom manages to pack lunches, read bedtime stories, and set out clothing for Monday morning.  It works better this way.
Not that there aren’t successful single parents, but the odds certainly favor any children from two parent households.  This maxim continues to hold when you carry this analogy to genetics.

Genetically, we are half of each of our parents, who share the responsibility for what we become…blue eyes, brown hair, height…we all understand this basic part of shared genetics in some way.  But there are other more complicated jobs involved,  and monitoring cell division to be sure that our genetic code is copied properly is among the most important jobs. 
If you consider that there are countless codes and arrangements of proteins along our DNA that must be correctly copied each time we make a new cell (I imagine a billion tiny monastic scribes, scribbling away along the double helix), somewhere along the line, someone must supervise, because the monks get old, tired or might just be hitting the sacramental wine.  We are human and prone to error, after all.  P53 is the ultimate quality control, or parental control, so that shoddy product doesn’t get out there and replicate.  There are supposed to be two inspections of the work, each putting their stamp of approval on it.

With Brent and Lauren, genetically speaking, I have been a pretty horrible parent.  I never supervise their work, because I provided a non-functioning P53 gene, utterly ineffective, completely indulgent of their misbehavior and “creative license” in copying code.   I never correct them, or keep them in check.  I enforce no rules.  As far as I am concerned, they can run wild in the neighborhood, play music really loud, flunk out of school, cover themselves with tattoos and generally become less than model ‘citizen cells.’   And then reproduce.  Umm, yes, that is cancer.   

Dan, on the other hand, has been the genetic watchdog, the good P53 parent, reading over homework, correcting their spelling, making sure that they tow the line.  Only three times has his genetic supervision slipped up: once, in Brent’s 13 years, and twice in Lauren’s 10 years, despite billions upon billions of cell divisions. 
And I, for all of that time, have been gutter-drunk at P53, for more than a decade.  I failed to step up, and genetically ‘parent’ at these critical times.  Other moms do, which is why childhood cancer is so rare.  It may be irrational, but there is a guilt that comes with this understanding, and if not guilt, exactly, then certainly a sense of responsibility. 

Now, before you chastise me and point out that I didn’t choose this for them, I am well aware, in my head, that this was well beyond my control.  But, as I like to say, what you know and what you feel are not always in agreement.  And it would be dishonest to suggest that this isn’t something that I haven’t struggled with on some level at various times, this disconnect between head and heart.
And probably, subconsciously, I try to compensate for that.  Perhaps it is better said, I overcompensate.  If I failed to be vigilant from the inside, at the genetic level, I am hyper vigilant in their battle against cancer on the outside, attuned to potential signs of problems, checking over the labs and scans with the doctors.  I am pretty hands on, from the outside. 

Dan said the other day that I write sometimes like I am a single parent.  This put me into a funk, one that I couldn’t seem to shake, because he is integral to our story as a family, and I consider him indispensable.  I cannot imagine doing any of this without him.  It occurred to me that my rather emotional response was likely due to the irony that he has long been the single parent at the genetic level.  I am aware that there is no logic in this.  Because so much about this doesn’t make sense, I am not going to fight it, but simply acknowledge it.
It is all so complicated, but at the same time, quite simple.  We want the best for our children and we want to be our best for them.  Sometimes we have to overcome our genetics, sometimes other circumstances.  But we keep working at it.

That part is universal.

Monday, July 22, 2013

Help on the inside

I woke today, thinking about the changing of the guard.  We have done another year, and seen another group of doctors move on to new opportunities.  

Back in Ohio, when Lauren had her scans two weeks ago, I was forced to work my way through a number of people that I haven't met yet, and who have little experience in the University Hospitals system, much less with the crazy things that the Ramers have working.  

We became increasingly worried that evening, as we didn't get the call about Lauren's scan results and labs like we always have.  The last time the hospital didn't call until late, they were cooking up Christmas plans for brain surgery, so our anxiety was at least grounded in experience.  Going off of routine is never good on scan day, which is the time when we most often repeat the phrase "Boring is Beautiful." 

Finally, by 10 pm, to avoid crawling out of my skin any further, I called. I became increasingly frustrated, trying to get information out of strangers, who understandably wanted to follow protocol on their first day, and were reluctant to use alternate routes to information, suggested by me, a person that they didn't know. I do get it, from their perspective. I had to work hard, but after a series of phone calls back and forth, each with me rejecting the idea of 'calling back in the morning,' I got some answers.

Anyone who has gone through cancer can attest to scanxiety. We manage pretty well, but I need to tuck away the fact that summer scans will likely bring the challenge of newbies, and potential difficulty getting results.  I mean no disrespect here, and look forward to meeting these new folks in a couple of months when we return. (How delicious does that sound?!) 

Yes, the scans ended up clean, in case I left that in doubt.

So, as I mentioned, it is a universal time for docs to leave the nest and move on to other institutions, taking what they have learned and applying it to new patients, new situations.  This includes those here MSKCC.  We said goodbye to a number of doctors this weekend, and find that we have met many new ones as we leave.  I do not want to get to know these new ones at all, if you know what I mean.

There is undeniable advantage, however, in having people inside who know you, and who understand how to make the system work for you, be it in a hospital, insurance company, actually any large institution.  We find that at this time of year, we are in some ways the veterans, knowing how things are done and what in fact can be done. Unfortunately, this is the voice of experience. I could do without the experience.             

Part of beating cancer, is the medicine.  We are hugely compliant in this, evidenced by the fact that baby Vanco will be coming home again for a few days.  If it is medical marching orders that we get, we are great soldiers.  I have an alarm on my phone to remind me of what we need to do, and when we need to do it.

But, the other part of getting through cancer, is working through the institutions in order to have a sane life.  For me, the rules of the hospital are somewhat 'lesser' commandments. They are more like guidelines, for those who lack common sense or courtesy. Umm,  I view them as suggestions (visiting hours and age restrictions comes most immediately to mind).  Ok, as I continue to backpedal, much of it is arbitrary nonsense, and must be worked around.  

Making any of this work for my child and for my family, sometimes means bending institutional "rules" a bit, while, of course, maintaining respect for the health, healing and sanity of those around us, patient and health care worker alike.  

Considering how many doctors I deal with, for example, I personally wish that emailing was a bit more common, and encryption a bit less.  I recognize that everyone isn't as open as we are (most people don't blog the details of their health, or post X-rays to help explain things), but HIPPA and encryption are obstacles for me, rather than protections. Multiple 'release of information' forms, email permission slips for each individual doctor (are you kidding?) and institutional encryption worthy of Soviet cold war secrets, well, I haven't the time. 

I have been fortunate to have had the the help of folks on the 'inside,' to help cut red tape and to make our hospital lives run as smoothly as possible. Considering how much of our lives have been in hospital over the past two years, having our hospital lives "work" is no small thing.  But, as those folks graduate and move on, so must we.

And with any luck, we will have fewer doctors to email, and less reason to care if our hospital lives "work." 

Because we will be far too busy with our lives on the outside. 

Thursday, July 18, 2013

The latest (or last) surgery

We wait, with coffee.

We have returned to New York, to do what we are hoping is Brent's last surgery.  We are grateful for our blessings, which I count like a rosary.  We have no oncology.  We are all together as a family. We have no oncology.  With Dr. Healey's help, Brent will be able to walk.  We have no oncology.  I cannot seem to repeat that one enough times.  

It has been a long hard slog these past two years.  But I feel, more than hope, that our world is going to open up, and that our kids will only visit the hospital once every three months for scans.  I feel, more than wish, that our family might be having a bit of a breather.  Often, as we approached such a point or potential before, I longed for such normalcy, and craved for time at home, but I didn't feel that it would happen, quite the way that I do now.  I have a calm about things, that I have not had in a long time.  I do not feel that I have to fight my circumstances.  I do not like to fight, incidentally, being more of a 'peace and love' kind of girl.

My alarm went off at 430, which was not nearly long enough after Vanco was finished.  Once I showered, I woke Brent so that he could take his second Hibaclens shower. As we left, I woke Alex to bolt the door behind us so that if Olivia should wake up, she would not wander, because I knew that Alex was going immediately back to sleep.  I am grateful that he is nearly 16 and can help look after the girls while we are at the hospital this morning.  Such a blessing!  

It was already hot and very humid as I pushed Brent the five blocks to Sloan Kettering.  Dan, coming from a hotel, would meet us there.  
First thing this morning, we bumped into our pre-op nurse in the hallway, who remembered Brent from his first surgery, and even came up with his name after a year and a half.  The nurses here are amazing, if I have neglected to mention it. The oncology nurses at Rainbow Babies and Children's Hospitals are pretty awesome too, but we have not really seen them lately.  This is another blessing to count, duly noted.

We have come to the point that even here at MSKCC, we are considered veterans. They approach us a bit differently, much in the way that you are treated differently when having your second child. You will certainly have questions, but every last detail does not need to be explained.  We are not the nervous first time parents.  Brent is not the nervous first time surgical patient.  While we would prefer not to be doing this, at least we are familiar with the process, which is at least a known quantity among so many unknowns.  

I was interrupted here by a woman who struck up a friendly conversation with me. (A few weeks ago, Brent pointed out that this happens all of the time, strangers speaking to me out of the blue..and I have begun to notice that he was right)  She is alone, waiting for her step father to be done with surgery.  She is anxious, I think, in a way that we are not.  (I would return to the part of my mantra that says that we do not have any cancer to deal with right now, and we have comfort in the familiar process)  But cancer makes everyone here family in a way, and this 'cousin,'  if you will, needed reassurance, or maybe just someone with whom to share her hopes and fears, as we all do at such times.  Her step father happens to be part of a clinical study, and she shared with Dan and me, the promising ideas that are being explored here. It is exciting to learn about the things that they are able to do and are learning to do. 

We were called in to see Dr. Healey, who had good things to report.  I had shockingly few questions, thinking back on it.  We talked about the distant future for Brent.  There were not, I noticed, very many responses of "we will see," an oft given answer which had been the source of much frustration for me over the past year and a half as I tried to peer into the future and sort out the plan So many things had hinged upon the success of the very next step, that trying to see the likely eventuality and the road between here and there was futile.  There were too many variables, .  

I have finally become comfortable being very, very present, which might have been the point of this exercise, if I were to be so bold and speculate on one of God's purposes.   And so now, we have begun looking far ahead, lest I become too comfortable. Yes, I believe that God also has a sense of humor. 

In the PACU, we were visited by nurses of surgeries gone by, which was nice.  Brent woke to declare from a narcotic haze that "This is going to be the best admission ever!"  evidenced by the fact that he only had one IV that was soon pulled in recovery, and no catheter.  What more could a 13 year old wish for?  

We found out, when we eventually made it to the floor and he scored a single room...and furthermore, learned that age restrictions that would have made it difficult to get Olivia (at 5) in for a visit, have been lifted.  It doesn't get better than this.  Brent is right, this is going to be the best admission ever.

And, I am hoping, the last.

Thursday, July 11, 2013

The latest addition

I am a fan of babies, evidenced by the fact that I have had four of them. They are a lot of work, no question, but they quickly grow up and I am in awe of what they can do and the things that they can accomplish, which are both wondrous and gratifying for a parent to see.  This is what makes the effort and inconvenience of having a baby worthwhile. 

 Because we all know that they are hugely inconvenient. If you find that you are not in this stage of life, I would cite (or remind—because we so soon forget) sleep deprivation, the amount of ‘equipment’ involved, the monumental  effort required to simply leave the house….all of the things that you have to remember to do, and to buy: formula, diapers, wipes...  I used to say that God gives us amnesia so that the term ‘sibling’ would not become obsolete.

There is a new baby in our house and his name is Vancomyacin, initials, I.V.  I think it is a boy…”Vanco” for short.  Regardless, he wakes me up at all hours of the day and night, needing prepped, fed, checked and changed.  He is a huge inconvenience and kind of fussy.  But we are glad to be home with him.  Again, like with a baby, the excitement of being home blinds you to the fact that you are now in charge of your newborn…and all the responsibility that goes with it.  Nurses don’t come home with you to care for your new bundle of joy.  God bless my husband for his early morning attention to Vanco before he goes to work.

Yesterday, because Lauren had to meet with her oncologist first thing in the morning (her brain looks great, btw), I had Alex babysit Vanco, and flush Brent's line with saline and heparin when he unhooked him.  Thank God for cell phones, so I could check on them...not terribly different from the first time I left him with Olivia.  He of course did fine.  Sigh...

There are days that I weary a bit of this duty, perhaps because I am coming in with a two year sleep deficit to begin with.   When the comparison of Vanco to a baby was first made by a dear friend (actually, to the ugly baby from Seinfeld, only living in my house),  I thought,” Holy mother of God—I am 44 years old and far too old for this nonsense!”  I would remind you that I am eagerly awaiting the first opportunity to have my ovaries yanked.

I think that at this point in my life, I ought to be thinking more about grandmother status—where you enjoy the little darlings and send them home with their mother when the day is done.  If you are “that” kind of grandmother, you send them home all hopped up on sugar.

So, we have a special bag filled with all of the accoutrements.  This diaper bag has tubing, syringes, alcohol swabs, ice pack for the antibiotic, which is a little different than the one I used to pack.  But it is really not so different, and I am getting into the swing of things.  We do in fact go places.  We just plan ahead, and hang the IV from whatever is available…Grandma’s chandelier, or in the car, using the hook for the dry cleaning…you figure it out.   

I do have to keep an eye on supplies, which you cannot simply pick up at Walgreens.  We have a separate pharmacy to deal with.  There are special doctors and nurses to check in with for this.  Also, there are particular labs to draw because of it. I haven’t designated a separate color for it on my calendar yet, only because I haven't gotten myself that organized yet. (Each child has their own color so I can keep them straight)

I am grateful to be home, but as we travel next week to NYC for surgery, I will enroll our youngest in boarding school with equal gratitude, and let the fine nurses at Memorial Sloan Kettering finish with Vanco.   Like with my other babies, I hope to be amazed with what he accomplishes. 

They grow up so fast


Sunday, July 7, 2013

Wedged in the middle

Yesterday was a big day for us Ramers.  Brent completed chemo one year ago, which is one tick of the cancer clock.  There was no cake.  We didn’t celebrate, unless you consider playing a game of Catan as a family a celebration (I kind of do).   It was, however, something that I was aware of, one of those dates that stick in your head.  It is one of the days that seem to matter.  We have rather a lot of those days and dates those that give me pause.  Some people call them “cancerversaries.”  Diagnosis, end of treatment, surgical removal of a tumor…they are important steps in the process.  But there is some controversy, according to some, in marking them, in celebrating.  Should we?
I think that on the one hand, it is important to see how far we have come, and to reflect.  Has the last year been easy?  Not remotely.  Brent had physical therapy.  He has already had 3 surgeries with another one scheduled in less than 2 weeks.  He faced the strong suspicion of his cancers return and the possibility of losing his leg…again.  He missed 62 days of school.  So, no, I would not characterize it as easy.

But was it easier than the year before?  Most certainly.   The previous year Brent missed all but nine days or so of school, spent more days at the hospital than at home, had 4 surgeries, countless scans, procedures and the horrible beast that we call chemo to wrestle, as he did simultaneous battle with cancer itself.   And as a family, we had that small matter of Lauren’s brain tumor to contend with.   So, I will enthusiastically go with our vastly improved, cancer free trend of the past 365 days.

In short, we have come a long way, and are most grateful to be cancer free:  Brent for one year and Lauren for 18 months.  I am grateful, and would celebrate the milestone in my mind. But I do not want to live 'there,' tied to our difficult past.  

Today, we celebrated the baptism of my nephew, and enjoyed brunch with extended family.  We had a quiet afternoon, reading outdoors after a nap (And we sit here laughing at Alex as he sings over the roar of the lawn mower… who is laughing at himself, now that he is caught).  It is summertime, and we are together which I consider a blessing on the sheer face of it.  The nice weather today, the opportunity to be outdoors and to have a bonfire is an extra bonus.   I swear that I don’t need much. A nap is always a good start these days, because I am so tired. 

Tomorrow is a new day.  I understand that they all are.  But Lauren has scans, so it threatens to be another day or date that will matter, worthy of remembering.  It is potentially wedged between the denouement of the past year and a half, and the beginning of a fresh nightmare.  This is the anxiety, the reality that we must manage.  And for the most part we have. 

I should point out that “we” means Dan and me.  I do not notice any concern in the kids at all.  They are kids, and this has become normal, these ‘field trips’ to Rainbow Babies and Children’s Hospital, our upcoming ‘vacation’ in the Big Apple. 
This may not be the way that I grew up, but it is normal to them.  So I try to adopt their attitude and pray that it remains simple and that our future holds many more opportunities for Olivia to squeal with delight over a package of marshmallows.  It doesn’t get better than that.  And this is the day I currently have, one that calls for pointers on the proper toasting of a marshmallow.  

I am going to get to that important life lesson...right now.

Tuesday, July 2, 2013

Mother-of-four day, average pediatric cancer day, or LFS day?

Some days are 'normal mother of four' days.  Some days are 'normal cancer' days.  Some days are LFS days:  We ratchet it up a notch for those.

So, we are blessedly, and most gratefully, home.  And we have no immediate oncological worries.  This makes it, upon waking, quite possible for it to be the first sort of day:  a 'normal mother of four' kind of day.

But, as I would point out, today I woke at 4:30 am...with the vague understanding that something was amiss.  I walked into Brent's room, and realized immediately that I did not flush his line and unhook him at 1am,  like I was supposed to.  This was because, as I soon realized, I neglected to plug in my phone... which was obviously dead, failing to alert me as it faithfully does nine time as day to what I must do antibiotic wise.

Ahhh!   I unhook, flush, and heparin... only to reflush, and hook him up a mere 2 1/2 hours later, with the new bag of vanco.  Such is my life.

This now qualifies as a cancer day, because while this is not active cancer nonsense (Thanks be to God!!), it does, however count as cancer aftermath.  I want points...although we recognize that they are not so different: parent points, spouse points, kid points...and we actively tease that they are all redeemable for nothing in our house.  Collect all you would like!    :)

So, I kept the Vancomyacin train running on time. Kudos to me!  I can collect a bazillion points!

But, of course, it cannot end there.  We aren't those sort of underachievers.

Lauren has scans on Monday, July 8th.  I will most gratuitously borrow from one of my brilliant LFS friends and leave the annotation completely to her wishes:  LFS could stand for 'Living For a Season.'  We do quarterly scans that make living a seasonal affirmation...and God willing, one that we Ramers might continue without chemo, radiation, surgery etc...   Our 'season,' well... it is upon us.

This would make it an LFS day alone.  But we do not simply indulge in such episodic anxiety.  We Ramers need to add something more. So, on Friday, I got the call... from Make a Wish.

Make a Wish is a wonderful organization.   I have a whole bunch of text that I put together after Brent did his MAW a few weeks ago.  I haven't had the time to put it together with the photos (shame on me!!) but, even without this, let me just say that they do an amazing job with kids in a tough situations.  Lauren, with the whole 'Brain Tumor thing,' qualifies as one in a tough situation, without being at all understated.   We do a lot of understated in our house, for the record. 

Because failing to do so, we would be absolutely certifiable.

So,  Lauren wished to be in a movie, when she met with her wish granters several months back.  She is very Hollywood, comfortable speaking in public, and something of a ham.  Just saying.  So, I think this is a fabulous wish for her. The mere thought of this would make me personally throw up, but to each to their own.  And, as this is about Lauren, she would love to be in a movie.  We were advised that such a wish could take some time, based on character type, and movie available etc. etc.  Lauren was good with this.  She, as I have mentioned, is a pretty patient girl.

So, we received the call on Friday, that there was an opportunity for Lauren.  It was not in California, as she had requested, but NYC.  I had goose bumps.  Had it been in in California, I would have shot it down outright, knowing of our pending surgical plans on a different coast.

"Really?  When?"

" 'On set' July 21st"

I didn't know what to say.  We would already be there for Brent's surgery on the 18th.  I should remind you that we have no idea what is involved for Brent (a 3 hour surgery or 12?), or how long he will be at MSKCC. (we are perpetually surprised)  We are generally comfortable with the 'leap of Healey faith.'  It has really worked for us so far. But in LFS situations, this ambiguity adds an additional challenge. 

Do we commit to such an opportunity for Lauren?  Should we?  We do not know if Dr. Healey intends to do reconstruction or not.  It sort of makes a difference.  And not just for Brent.  Further, it is un-askable at this point, of Dr. Healey.  We recognize that it is a 'game time' decision on his part, and the outcome is utterly and completely uncertain.  Damn you, crystal ball! 

I deferred to Lauren.  When she got back from oncology camp (huge hit, btw!)  I told her about the call, and the opportunity.  As well as the limitations.  She immediately said that she didn't think it would be right for her to be having fun making a movie, if it was at all possible that Brent would be in a hospital...and couldn't enjoy it with her.  She has a pretty strong sense of family, that one.  She wasn't interested in theatre camp either, if it meant being here in Brecksville, without the rest of the Ramers.  Her preference was to be together in NYC, with no 'special' fun planned for her.

This possibility was something that we had planned for back when we had the understanding that Brent would be a minimum of 6 weeks in NYC.  For the second surgery, we thought that Dan would bring out the rest of the 'Nation,' and we would be together for a period of time, giving Brent an emotional boost for the strong finish.  He got a reprieve, in coming home for a few weeks in the middle, but the benefit of being together, for Brent, for the is palpable.  We got this time together, like the three (or 6) musketeers....all for one and one for all!

There is part of me, that understands the logistical challenges (or nightmares) of this solution, of taking 4 kids to NYC for an indeterminate amount of time.   They are not small.  But when you consider the benefit, well, it is not even a close call.  We will do what we must, that which benefits most.  Together, well that seems to benefit most.   So, we will make it happen, somehow.

Make a Wish, well, it should be simple.  Your child wishes for something, and because they have a life-threatening challenge like cancer, this fabulous organization tries to make it happen. With LFS, even the beautiful, kind and wonderful things...well, they are more complicated.  I am blessed that my daughter recognizes our challenges as a family...feels them, and responds to them appropriately.  And my hope is that she has a wonderful wish, when the time is right, for her and for our family. 

May next week's scans bring the blessing of another season to plan such things.  And to wish.  And to be together as a family. 

I do not take such things for granted.  It has already been proven that we cannot afford to.  But maybe that is the point, or the emphasis, in the blessing.

Much love!