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Hanukah is a big deal in my family.  A REALLY big deal.  It may not be a hugely holy holiday for us Jews, but in my family it is an over the top moment.  For years my dad was the ringmaster of the “Hanukah Show” (as it came to be called).  He took great pride in handing out the gifts – many with a story attached to it – and REALLY enjoyed dramatically unveiling the “BIG” gift for someone.  I may have mentioned he is really good at gifts.  You have no idea.

Part of the “rules” of Hanukah in my family and in Husband’s family is that gifts go “down”, they don’t go “up”.  Meaning gifts flow from oldest to youngest and not the other way.  But, a few years ago, Husband and I decided we wanted to do something special for our parents – those living and those who are no longer with us.

This was truly a moment of “what do you get the person who has EVERYTHING?”  Our folks live fine lives.  No one is hurting for meals or clothes or trips or materials goods.  We racked our brain for something special, meaningful and sustainable.

Then it all became perfectly clear.  The other tradition in this family is one of philanthropy.  Husband has been involved in the Good Samaritan Foundation here locally his whole life.  His grandfather had a large roll in the growth of the foundation many, many years ago and since then a member of the family has been on the board supporting its mission.  There is also a family scholarship given out to doctoral nursing school candidates in his grandparents’ names.

For years growing up I watched my mom volunteer in my schools, take part in leading the PTA at my synagogue, sit on Religious School committees, be a Sisterhood member…the examples were endless.  Then a few years ago I watched as she walked into her Battle against multiple myeloma.  She left all she knew and loved to go to Little Rock, Arkansas with my dad to the University of Arkansas for Medical Sciences Myeloma Institute for Research and Therapy.

Not surprisingly, my folks made friends there.  When we would talk they would tell stories of other patients, the doctors, researchers, nurses and staff they met.  On one particularly scary trip I got to meet a few of them.  They are an impressive bunch and left a lasting impression on me.

I’ve worked in Major Giving and have a passion for medical research.  For those of you who don’t know, let me make this next sentence very, very clear:

Money buys science. Science buys life.

It’s an old adage, but it’s concretely true and that phrase jumped out at me in the middle of our discussion of what to do for our folks.

Research dollars.  Scholarships.  An impact and an outcome and a legacy.

We quickly set up the scholarship to honor Husband’s deceased father and his mom at the Good Samaritan Foundation.  It would go to a graduate nursing student who has an interest in oncology to honor my mother-in-law’s triumph over breast cancer and the valiant battle my father-in-law fought against lung cancer for as long as he could.  I got on the phone to Little Rock and we chose to focus the fund on research dollars.  Formal names for the scholarship and fund were chosen.  Official cards were printed and placed into envelopes to hand to my folks and Husband’s mother, aunt and uncle at the appropriate family celebrations.

We did it quietly.  There was no fanfare, no dramatic opening of the envelopes.  We just wanted to say “We love you,” and “Thank you.”

Over the next few days, I talked with my folks about the fund in Little Rock.  They wanted to make a change – a small one.  Instead of focusing on research dollars, as I’d guessed they’d want, they wanted to focus the money for those who had little.  They wanted to support the social workers who do much with little and help out those, like my folks, that leave their homes and families and communities to come to Little Rock, but with far less in their pockets – all hoping for more time and more life.

And so we did.  My parents gave some money to their new fund and took an active role in raising money for it – so much so that the first year that fund raised over $15,000, an exponential boost to the social workers’ coffers.

The scholarship given out to the graduate nursing student helped her get through school so that we could have one more dedicated nurse on the floors of a hospital or walking the halls of a nursing school as faculty.  We can’t get enough of either fast enough.

Neither of these gifts are made of any precious metal, there is no designer label on them, nothing sparkles, there is no bleeding edge technology, there is no fad or trend or cool factor anywhere near it.  But somewhere there is a family sitting in a hospital room listening to monitors beep and whir praying for a vital sign to change that doesn’t have to worry about a hotel room tonight or a meal tomorrow or gas for their car.  And there is a student who just wants to heal people or teach someone who doesn’t have to worry about their books or their childcare or their tuition this semester.

And for one precious moment amongst all too many that whiz past us, our folks knew how much they meant to us and that the examples they set in front of us were not lost or forgotten or taken for granted.

I cannot thank them enough for letting us say “Thank you.”

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I spent most of my breath uttering the words, “Okay, what do you want me to do?” because, seriously?, I offered very little except a warm body, which was enough sometimes.

Mom has struggled with a really high fever for the better part of a week – and that’s just (a) unsettling and (b) scary. What’s more aggravating is that no one can tell us where the g-ddamned thing is coming from already. She’s subjected to test after test after test which takes hour after hour after hour of waiting with very little answers at the end. The answer is always, “Well, we just don’t know. We’ll just have to wait and see. Don’t worry, we see this all the time.”

Well, dickhead, WE don’t see this all the time. WE are not big fans of 104 degree temperatures and uncontrolled body functions and are pretty sure they are BAD things that should be stopped.

Or did I miss a memo?

My folks ran into some of the best and worst nurses this week. I observed some of the same, along with some mediocre doctoring.

(As an aside, I am a terrible person to have sitting around a hospital. You see, I work for a hospital, so I know some of the bullshit that goes on from the administrative side. But, I work for a hospital that is about to launch a care model that is how medicine SHOULD be delivered – and so my standards for how a patient should be cared for are THIS HIGH. I hate to be reminded that this is not how it is. Especially when it’s my mom who’s the patient. Aside over.)

My favorite was the surgeon who came in spouting all this crap about an upcoming gall bladder and abdominal / pelvic scan. She went all the way down the path of “oh, we’ll look at both and this could range anywhere from nothing to having to remove her entire colon.”

Are ya kidding me? Why would you say that? And, more importantly, why would you sit here and talk about this test FROM ACROSS THE ROOM WITHOUT EVER LAYING A HAND ON YOUR PATIENT?

Maybe you should examine her abdomen (which the attending physician said was getting better)?

Maybe you should temper your discussion in front of your patient who is so tired she can’t stay awake?

Maybe you should consider how you would act if it was YOUR mother laying in that bed?

But!

I talked with Dad this morning and Mom’s fever was never higher than 99.4 all last night – and that is something to behold, my friends. I’m hopeful we’re now going to be moving in the right direction.

And!

As a welcome home present for me, Benjamite slept from 9pm to 3:57am. Love that guy.

Yep, I’m here. First, let me say that Little Rock is a lovely little town. Everyone is very nice. Really nice. Like, cars actually stop and wait for a pedestrian to cross the street nice. It’s unnerving. Rush hour traffic is 4 cars waiting at a light. Seriously!

My folks were lucky enough to score a very sweet pad in an awesome high-rise building that overlooks the river for their stay here…too bad they aren’t here – the hospital has nothing on this place. Out the window in bedroom number one is the (wait for it)…Clinton library…complete with his 6,000 square foot residence on the top. I can’t even look at it.

After visiting with my mom at the hospital for awhile, Dad and I went to grab a bite of dinner. Actually, we decided to go find a restaurant where we could pick something up and bring it back to the FabuPad to eat. So he took me to the Dixie Café (or something like that). The menu was as you’d expect, fried catfish, fried chicken, fried okra and… fried corn on the cob.

I shit you not. My arteries got a little constricted just reading it.

I didn’t know what to expect when I came here, but I will carry the following image in my head as a landmark memory of my time in Little Rock, brief though it may be. I got off the plane and headed straight to baggage claim. I was waiting at the carousel for the handlers to start throwing baggage down the chute when I noticed the carousel next to us was for a Delta flight coming in from Orlando. The passengers had on the requisite Mickey Mouse shirts, bags with Magic Kingdom on it and many, many Disney Princess items scattered about. But upon second glance, I realized most of the passengers also resembled each other in another way.

Most of the men were dressed as follows:

Cut off shorts (khaki)

Flip flops of varying degrees of “worn”

Hunting shirts

HUNTING SHIRTS, people. Not t-shirts with hunting slogans. ACTUAL HUNTING SHIRTS.

That is all.

Mom is holding her own, but not out of the woods just yet. I am of no help to her whatsoever, except that I bring stories from home and can try to carry on a conversation about something other than drugs, nurses and vital signs for a short time. She’s had some terrible nurses (OMG) and upon hearing these stories I immediately told my dad to pick up the phone to call a family friend here who is closely associated with the medical center so that she may open up a can of whoopass on the appropriate hospital administrators. He wasn’t so inclined to do that immediately (as he was busy trying to save my mom’s life), but today when she called to check in he did mention a few details of their difficult experiences. Thirty minutes later they had two administrators in mom’s room apologizing and addressing the issues. Damn straight. And we ain’t done yet, bitches.

Again, I know I can’t do much, but I know where to find the big sticks to swing in a hospital. And I brought my bat with me this time. I’ll relay some of the stories later after everyone is past this.

Dad’s at the hospital again for the night – he hasn’t slept in 40 hours. Because of the horrible nursing experience – and one horrible night where he thought he’d lost her – he won’t leave her alone until she’s really well. It’s a sad state of affairs, but he has had to play doctor more than once on this journey because the care is more than a little disconnected, to say the least.

I, for the first time in 10 weeks, will get to sleep all night…allegedly. I doubt I will, though. And then tomorrow I’ll go sit with mom while dad comes back to the FabuPad to work a little, shower and sleep.

That’s about all I can do. But at least it’s something.

The downside is, well, it’s damn hard to go back enthusiastically. The first time, all the anxiety was wrapped up in the unknown. What is the treatment? What are the side effects? Am I going to feel really sick? How does hair loss happen? Can I be the supportive partner?

This time, because the treatment regimen is essentially the same thing, just on a compressed timeline, they know what’s going to happen. And, while it isn’t horrific (relatively speaking), they know enough to know it still sucks. There are still schedules that will get screwed up, medications that mess your personality up, chemotherapy that screws with your body and basic sense of tastes.

Hard to get fired up for that, huh?

But, I hope they can gather some strength and motivation from the shorter timeline and promise of a longer “break” at the end. And I hope they can gather strength from each other. I’m sure being on a path like this is a tremendous strain on any relationship. I have to wonder what impact this kind of experience has on a marriage. Kinda like everything else in life, I guess you have two choices: better or worse. (Wonder if that’s why those are in the secular wedding vows?)

The Swimmy is missing my folks a little more this time. She, too, knows more this time. Talking on the computer isn’t as novel and isn’t as great a substitute, so we’re trying to get more creative with how we communicate “virtually”. But, nothing substitutes for an actual hug. To her credit, she is understanding and knows that they are in Little Rock to talk to doctors who will help “everyone feel better.”

You got that right. Go Razorbacks.

UPDATED TO ADD: Mom went to the doc today for an evaluation before she starts her treatment this time. Result? MYELOMA-FREE, BITCHES! Woo!

In other news…

Mom is done with Phase I of her treatment. All the drugs have been taken, the chemo has been handled, the stem cells have been harvested, and they get to get the hell out of Dodge (heretofore known as Little Rock) for two whole weeks. Huzzah! They will drive home tomorrow and I know they are — THIS READY —- to be home.

The past couple of weeks have been especially hard on Mom while she was away. We’ve had a couple of deaths in the family and she feels badly she wasn’t there to support the family. Combine that with a heaping dose of homesickness with a side of pharmaceutical fatigue and, well, you get the picture. This break couldn’t come at a better time.

You can hear the weariness in Mom and Dad’s voices these days, so I hope this trip home will be just what they need to recharge for Phase II of The Battle. I know The Swimmy is looking forward to seeing them. She is starting to have some “behavioral issues” which I believe are directly related to all this. Even though we “talk” to my folks almost everyday or night via videoconference, it’s not the same as getting a hug, and it’s starting to wear on her a bit. Today, for the first time, she verbalized that she missed them. So I was glad to be able to tell her they were on their way home.

And that? Is what’s up today. What’s new in YOUR world?