Alice and Dorothy

 

I have tried clicking my heels on more than one occasion, wishing ourselves a return trip home, channeling Dorothy and those fancy kicks of hers.  There is something about these two sitting down together that just tickled me when I saw it on FB.  (And if Dorothy is any kind of friend at all, there is something stronger than tea in Alice's cup.)

 

 

That is no lie.

 

 

I have often used the phrase "going down the rabbit hole" to refer to the whole cancer experience because it is just so otherworldly, not unlike poor Alice's journey.  Suddenly there are strange cakes to eat, bottles of stuff to drink and everyone seems to be speaking in an odd language that only somewhat resembles English.  The rules are upside down. Nothing seems to make sense. Your body is not your own.  Everything is foreign.  Surreal.

 

We too, have seen some weird shit.

 

A friend of mine has a son going through treatment right now, and mentioned that they worried that he might need a transfusion, which he has never had.  I vaguely remember the first time Brent needed transfused, our worry and concern, having never done something like that before.  He has had nearly 40 transfusions to date.  We are very grateful for the donors, but not remotely anxious about the actual transfusion, when such an occasion arises.  We have spent far too much time 'Through the Looking Glass,' if such a thing has become routine. 

 

We were told at one point to be alert for the symptoms of narcotic withdrawal on our 12 year old, several weeks after his 18 hour surgery. "Umm..can you tell me what they are?" having no practical experience with narcotics, much less the associated problems with weaning your child off of them. We do not bat an eye at a 5 hour surgery, either, considering one of such length a "middle of the road procedure."

 

We wound our way through genetics. I have thought at length about myself at the earliest stages of my own development, where somehow, I went rogue in the most unusual of ways. I have talked to my kids from a young age about how some decisions are critical and can have a huge impact on their life.  What was my microscopic 64-cell self thinking?  Or was it much later? Regardless, that had some impact, that genetic 'improvisation.'   As a mosaic, I am a freak, even among mutants.

 

I was always a strong believer in nurture over nature.  Somehow, I must concede that nature scored one in this skirmish. 

 

Brent experienced hyperbaric oxygen treatments, without ever visiting Michael Jackson's Neverland Ranch, which as I understand it, is what many people in the general public associate with HBO.  Yes, it is a real treatment.  With insurance codes and everything.

 

I took my 10 year old to my OB/GYN to have her lopsided ovaries checked out today. (all good there, btw)  It was absurd trying to fill out the electronic patient questionnaire.  There were not nearly enough spaces to explain Lauren's cancer history, and far too many other questions, all of which should have been covered with the blanket observation that "She is 10," Unfortunately, this was not one of the options to select from.  Most 10 year olds don't go, of course.

 

We have been down the rabbit hole for a long time, and have begun to peek our heads out a bit, which is kind of an adjustment, and rather bewildering actually, being exposed to sunlight after so long.  We are blinking and rubbing our eyes, looking at the great outdoors.  Dan says that the weather has been 68 degrees and fluorescent for 2 years now.

 

 

Our lives were hit by Dorothy's tornado. "It's a twister! It's a twister!"   Now, we are sweeping up the rubble, literal and figurative.  I have stored away IV supplies worthy of a small ER, and wound care supplies I hope to never need again.  I have shut down my kitchen pharmacy, at long last.  We get to take a 2 month hiatus from pediatric oncology...scans are not scheduled until mid October. 

 

Dan and I have looked around at what remains, and are grateful.  Sure, there are things that we need to realign, things that took a back burner, low on the priority list for too long.  But at the end of the day, we are poking our heads out of the rabbit hole as a family.  There are some scrapes and bruises, naturally, but we are all here.  This, we do not take for granted. 

 

There is a saying that a person doesn't get cancer, but a family does.  I am pretty sure they didn't mean this particular genetic problem, whereby a family literally gets cancer, but rather that cancer affects all members of a family.  I think that we are doing OK overall. We would prefer less screen time for the kids (both on electronic devises, as well as in hospital), but what parent out there doesn't?  Probably, we will adjust to 'new normal' just fine.

 

Everyone who does this cancer detour has a different experience.  But it universally crazy. Oz, Wonderland, Lilliput... Hades... When Bizarre-o-world begins to seem normal, you know it is time for a break.  We were due for some time away, and I am very happy to bid farewell to the Wizard and check out of Hotel Wonderland. 

 

We know that we are likely to be back at some point, given the LFS.  Dan says, if it is 2 months or 20 years (I vote for 20 years-longer, actually) we should spend our time in the meanwhile living, with joy and happiness.  No argument from me, with the addition of vigilance.  Joy, happiness and vigilance.  

  

And of course, I now have Grace Slick singing in my head: 

     

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don't do anything at all
Go ask Alice, when she's ten feet tall

And if you go chasing rabbits
And you know you're going to fall
Tell 'em a hookah smoking caterpillar
Has given you the call
To call Alice, when she was just small

When the men on the chessboard get up
And tell you where to go
And you've just had some kind of mushroom
And your mind is moving low
Go ask Alice, I think she'll know

When logic and proportion have fallen sloppy dead
And the white knight is talking backwards
And the red queen's off with her head
Remember what the dormouse said
Feed your head, feed your head

Read more: Jefferson Airplane - White Rabbit Lyrics | MetroLyrics

 

 

HA!  And now you do too.  ;)

 

Feed your head!



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


 

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.