Thankful Heart Happy Heart

Thanksgiving was very interesting this year.  Several weeks before, I had been trying to decide whether or not to cook Thanksgiving dinner.  I wanted to go back to Chattanooga, but we just weren't ready to travel again after being gone so long and home so little this year.  We often spend the holiday with some good friends here in the Keys, but hadn't yet made plans, so we were up in the air.  Then, Scott received an email from Al.

The very first phone call Scott made to Massachusetts General Hospital back in April was answered by the admitting RN, Al Ferreira, at the MGH Center for Chordoma Care.  Al was our contact at the hospital for pretty much everything.  He navigated the red tape, scheduled the appointments, coordinated the whole team of doctors/nurses/radiologists, answered our questions, assuaged our fears, and fought the insurance company for pre-approvals and pain med authorizations.  He was a friendly face during morning rounds in the hospital after surgery; he took Scott’s stitches out, and he was a friend to just shoot the shit about Dr. Who when that’s what Scott needed.  Just a few weeks ago, he was kind enough to take time from his busy day to get on the phone with me and the insurance company fighting another charge they were trying to deny.  He was the first person Scott spoke to at the hospital and the last person we said goodbye to.  The entire staff at MGH was amazing, but Al made it all work.

So, the email said that he and his wife were going to be waking up in Key West on Thanksgiving Day, leaving at 10:00 a.m. and driving to Fort Lauderdale.  He wanted a recommendation for somewhere to get a turkey dinner about 2 hours up the road from Key West.  Of course, we suggested that since our house is almost exactly 2 hours from KW they should join us for Thanksgiving dinner, and they accepted.  I was happy to cook and we were tickled to get to host them in our home.

I have written about Scott’s battle with Chordoma, and there is a lot more about it on his Caring Bridge page.  

http://www.caringbridge.org/visit/scottyoungberg/journal

Basically, it is very rare bone cancer.  Very rare.  They call themselves one in a million.  There are only about 300 cases in the U.S. per year.  About half of those are treated at MGH, which is why Scott was there and also why we actually know quite a few chordoma patients from all over the world even though there are so few of them.  But, the one that totally blows the statistics is the other sacral chordoma warrior right here in the Florida Keys.  Out of roughly 80,000 people in our little chain of islands, there are 2 in a million.  How ‘bout them odds?

And it gets stranger.  The guy lives right here in the upper Keys.  And we have, like, a ton of friends in common.  We had never met Jeffrey and his lovely wife Shevaun before this all started, but I guess life or fate or karma or something has a way of bringing people together.  As soon as friends in the Keys started to hear Scott’s story this past spring, the first thing many of them said was, “That sounds like the exact thing Jeffery has.”  Before we knew it, mutual friends put them in touch, Scott called Jeffrey and a friendship began.  Jeffrey was also treated at MGH, had the exact same team of doctors, and basically the same procedures except unfortunately, his was significantly worse.  His chordoma was one of the largest they had treated at MGH.  His battle has been even longer and harder than Scott’s, with a few more after effects, but he is also finished and cancer free! 

Of course, Jeffrey and Shevaun knew Al, so we also invited them to join us for Thanksgiving dinner and they accepted as well.  It was quite a day of giving thanks!  Just being in the company of both Scott and Jeffrey for their first holiday since kicking cancer’s ass was such an incredibly positive and uplifting feeling. But when you added Al into the mix, one of the people directly involved in saving both of their lives, it was kind of magical.  I know Jeffrey and Shevaun both felt it, I hope Al and his sweet wife Ginger did as well.  We all tried to thank Al and tell him how much he meant to all of us throughout the whole process, but he shrugged it off.  I just hope he got a feel for how much he means to the patients he helps. 

I don’t think anyone can go through something like cancer treatment and not be changed by the experience.  Just being the caregiver of someone in treatment has changed me.  Life seems a little more precious.  I feel like I've been given a gift of seeing more clearly the people who truly love and support me and to more easily forgive and let go of those who don’t.  Sometimes it’s been surprising to learn who is in which column.  The generosity of people has humbled me.  I will be forever a more charitable person as a result of this experience.  Every day is a gift and I will try and greet each as such.

 

I am so proud of Scott for how strong he has been and how he fought and won his battle.  It was a hard year.  Cancer treatment is weird medicine…making people sicker to make them well.  The treatments were tough and I know there were days when Scott wanted to quit, but he kept going.  So did Jeffrey, so did little Madi in California, so do all of the Chordoma and all the cancer warriors every single day.  If they can wake up with a smile and a thankful heart, we should all strive to do the same.

It was a real pleasure to have such an amazing group at my Thanksgiving table this year.  As Jeffrey often says, “Peace, love and light” to you all.

Our good buddy Wood was invited to join us as well but wasn't able to make it.  He did, however, do his usual rogue decorating…

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Where In The World Is My Mama?

Mom is not getting better.  If anything she is getting worse, according to Daddy.  Since being put under anesthesia for surgery on her wrist over a month ago, she has not been the same.  The theory seems to be that sometimes elderly people have trouble coming back from being put under, especially if there was any dementia at all prior to.  And she did have signs of slight dementia starting.  She imagined bugs and got some crazy notions in her head, but nothing serious.  I mean, she’s always been a little bit crazy, but I had noticed some slight slipping over the last year or two.  But, it’s like my brother Ken said, “On a scale from 1 to 10 of dementia, she went from a 1 or 2 to an 8 or 9 overnight.”  It is very frustrating because it’s now been 6 weeks since the surgery and she shows no signs of improvement. 

It seems like she cannot differentiate between her dreams and reality.  And she apparently has some doozy dreams…

She gets fixated on things and will not be convinced they are not true.  It’s almost like she’s in a waking dream…or series of recurring dreams.  One of the recurring ones is that the nursing home is shutting down and they are kicking her out.  One day Daddy arrived at her room and she kept talking about all the furniture out in the hall.  She said they were gutting all the furniture from all the rooms because the place was shutting down the next morning.  Of course Daddy tries to humor her by going back out into the hall and looking around.  He tells her there is no furniture out there, but she argues with him about it.  Then she tells him the nurses told her the power was being turned off later that day because the place didn't pay their electric bill.  She insists they are “putting her to the street in the morning.”  I know how badly she wants to go home, and I’m sure this is just her mind working out a way for that to happen.  In her mind, if the facility kicks her out, she’ll have to (get to) go home.

The nurses and staff bring all of her meals and drinks and manage her medications for her now.  For years she has been very meticulous about her pills; organizing them in her pill boxes and keeping charts of when she took what.  Now she is often convinced that the nurses are getting them all mixed up and giving her the wrong meds.  On those days she refuses to swallow the pills; one day she even spit a pill back out into the water glass.  Other times she is positive that they are trying to poison her and she won’t eat.

Another of her recurring fantasies involves money.  I’m sure her subconscious mind still holds onto all the worrying she did about their financial situation before the house was sold and most of the bills were paid off last spring.  She gets upset at Daddy, telling him that it’s his fault, he messed up something and now they owe thousands of dollars and everyone is mad at them and they are going to be homeless.  He tries to explain to her that they are ok and the bills are being paid, but she argues and won’t believe him.

The kind of comical one is the imaginary party going on at the hotel across the street.  She claims there is a hotel across the road from the nursing home, and people are always having big loud parties.  Apparently, they come and get her from her room in the middle of the night and make her go to the party even though she tells them she doesn't want to go.  We think she imagines the hallway outside her room is the “road” and when she hears people talking or laughing in the hall, she imagines they are having a party.

 

She constantly sees people who aren't there.  She thinks people spend the night in her room.  One day there was a cat that got into everything and ended up hurt but nobody would help it and it was running around crying.  Her ongoing bug/insect hallucination has just gotten worse.  The bugs from the house in the valley that had followed them to the mobile home have now followed her to the nursing home and the place is infected.  The other day she asked Daddy if he saw those firemen come through the wall.  She said there was a smoke in her room and a hair dryer caught on fire so the firemen came through the wall and took care of it…no, they didn't tear down the wall, they just came through it.  It would be almost funny if it wasn't so disturbing.

 

The one that hurts is that she imagines I am there a lot, sometimes there in her room, sometimes I’m at the party, and I either ignore her or I am outright rude or mean to her.  Daddy tries to tell her that I wasn't there, and she says she knows I’m in Florida, but then she will still insist that I was there the night before and was mean to her.  When I got to visit her last month, she asked me why I wouldn't speak to her at the party the night before.  I explained to her that I had just gotten to town and wasn't even there the night before, and she said maybe she had dreamed it.  I agreed that she must have dreamed it.  I told her how much I loved her and tried to tell that the next time she thought I was there and being rude or mean, she should tell herself that she must be dreaming because Suzi wouldn't treat her like that.  But I spoke with Daddy yesterday and it seems I had spent the night with her the night before and had been “plumb ugly” to her.

I know I shouldn't take it personally.  Poor Ken had her look him right in the eye and say “I hate you” because he wouldn't take the cast off her broken wrist.  And I know Daddy puts up with it every day and is able to let it roll off.  I know it’s not really what she thinks or feels, it’s just the disease or whatever it is that has gone wrong with her wiring.  In a lucid moment she will tell me that she loves me so much and doesn't know what they would do without me.  I know that she loves me and that she is proud of me and that she realizes how much I have been there for them and how much I've done for them.  But, I can’t help but wonder what is it in her subconscious mind that defaults to making me the bad guy.

Maybe it’s because I took charge of their financial situation last year and told them straight up how things were and what they had to do.  Perhaps somewhere in her poor mind she resents or even blames me somehow for having to move.  I know she feels like we forced them into the mobile home, even though we tried to make them understand they really didn't have a lot of choices.  Again, I know that in a lucid moment she fully understands what happened and realizes that we more or less saved them from a very scary financial future.  But, if she is currently acting out her subconscious and her dreams, it seems obvious that she is still working through all of that, worrying about money and housing.  Perhaps her worried mind has somehow put me in the role of the authority figure, the parent so to speak.  That doesn't really explain why she would imagine me ignoring her…I know I’m stretching.  Maybe it’s simply because I haven’t been to visit in a while.  Perhaps she simply got used to me being there so much over the last few years and now her confused mind doesn't understand why I haven’t been around lately.

 

I know I shouldn't take it personally.  But that is easier said than done.  As of today, it seems she is having trouble remembering how many children she has.  When Daddy told her she had three, she argued and said she thought maybe she only had two.  Of course Daddy said it broke his heart to hear her ask that.  I've tried to brace him for the day he shows up and she doesn't know him.  He says he knows it might be coming.  We talked a little bit longer, and something was said again about her not remembering her kids.  I laughingly said that I didn't even want to know which one of us she didn't remember.  Daddy didn't volunteer an answer, just laughed and changed the subject.  So, hmmm … but don’t take it personally, right?

We have decided to go home for Christmas because I can’t stand the thought of Daddy alone his first holiday in the new place, and I want to see Mama.  I’m really worried that she is giving up.  Daddy said she has made several comments about it not being worth it, and how maybe her time is over and she should just give it up.  When he questions her further on the subject she waves it off, but I can tell it worries him.  And I know it has to be so frustrating to her in her more lucid moments, because she does realize that she gets confused.  And now Dad said she has stopped talking about going home.  That worries me.

Ken took this picture a few weeks ago.  She doesn't even look like the same woman I've always known.  The way she holds her mouth and the set of her eyes are completely different.  I just wish we knew what has happened.  Where in the world is my Mama and is she coming back?

I Dreamed It Snowed Like Buffalo

If you have turned on a tv, listened to a radio, read a newspaper or simply logged onto Facebook lately, you probably know that Buffalo NY suffered a record early snow fall this week.  Not just a little light early November snow, but feet and feet of snow, thunder snow even!  Of course, watching the weather channel from the comfort of my home in the fabulous warm Florida Keys, my first thought is "How do people live like that?!"

It's interesting for me watching the news footage of cars and portions of houses nearly covered in snow drifts.  To be honest it is how I always think of Buffalo, New York.  When I was a child I remember hearing about a big snow storm in Buffalo.  I think now that it must have been the blizzard of '77 which left Buffalo frozen under for days.  I just remember hearing about the cars buried in drifts, people trapped inside their homes because of snow drifts over their doors, and I was both fascinated and terrified at the same time.  I would try and imagine snow that deep but at that point I had never seen more than 2 or 3 inches of snow in my life.  The thought of snow deeper than I was tall stretched even my pretty vivid imagination.  That's when the dreams began.

It was a recurring dream theme for a while afterwards.  Usually it began with my brothers and me opening our front door to find a solid wall of snow packed against it.  We would dig a tunnel out into the yard, then start digging upward so we could get above the snow line.  Since we were just children, and in my dreams the snow was a good 12 feet deep, we had to make a ladder of our bodies and would send Mark up to pop through the top since he was the smallest.  Once Mark confirmed that he could get through the top crust, we would make stair steps in the vertical tunnel so we could all climb up and have a look around.  Of course Ken designed the tunnels and figured out how to get rid of the extra snow with a special process he came up with (the engineer even then!)  Yes, I had very vivid dreams as a child.  I can still remember the feel of the cold smooth snow tunnel, the cold air in my face when I stuck my head out the top; and the look of the world, all still and white and undisturbed, dotted with nothing but roofs and treetops poking through.  We would try to crawl out onto the top surface and see how long it took to start sinking.  My dream snow was very hard packed.

I swear I dreamed it so often that it almost feels like a memory instead.  As a teenager I met some girls who had lived in South Dakota for a winter as children.  They told stories of a snow stack in their yard that stayed all winter long, and how they had tunnels dug all through it and played in it all season.  It was funny how their stories brought back "memories" of my dream adventures.  And now, after all these years, hearing that Buffalo is snowed under brings to mind my dreams of snow tunnels.

Word Dancing

About a year and a half ago, I wrote a song called "Word Dancing."  I posted the lyrics on here back in June 2013 as "My New Song."  Since I don't play an instrument, the music that accompanies my words can be heard only inside my own head.  Earlier this year, my brother Mark and I were discussing song writing and I had mentioned having a couple of fully written songs in my head that needed to come out.  He volunteered to take a stab at writing the music for me.  So, several months ago, I sent him the lyrics for "Word Dancing" along with 2 recordings of me singing it a capella (bless his heart!) and here is what he did with it.  I am so tickled with his interpretation.

So, give a listen to our first sibling collaboration song.