A Day in the Life...

A tense ride on 93-S to Boston. Why at 10:00 am is there such a backup? Tom alternates between vomiting, moaning, and falling asleep. We try to hold his hand while he vomits. We try to make sure he’s breathing, that it’s genuine dozing, not unconsciousness. Not that he’s ever slipped into unconsciousness on our watch, but you never know.

It all started a couple days ago with a peculiar headache. Localized to above the left eye, this came on out of nowhere. While it was uncomfortable, Tom was able to go to school and also get to a couple of appointments including physical therapy. But by Friday morning, the pain became intense, the intensity brought nausea, and then vomiting. Early morning call to Boston, they say to bring him in to the clinic office (as opposed to the ED, where he’d sit for too long).

High blood pressure was suspect. Now Tom has never had problems with either a headaches or high BP until this week, so this is all new, and frankly, quite scary. One of the first things Tom whispered to me in the early morning was, “do you think I’m having an aneurism?”

Dear God, I flippin’ hope not.

Hours later, Tom is resting in a room on 10 South, his usual floor. And to think that just three days previous, he and I were visiting a friend recovering from surgery on the Northwest wing of this same floor. I know Tom was enjoying being a visitor for a change, instead of a patient. Now he’s the one in the bed. Again.

Oh look, a uniformed officer stands guard at a patient’s doorway in the room across the hall. It’s not the first time I’ve seen a cop or hospital security standing in the doorway of a room, either on a floor or in the ED, you know, big city hospital and all that. (It’s never clear though, exactly who is being guarded, the patient, or everyone else and darn-it, I’m too polite to stare.)

I’ve been in this place many times, to paraphrase Leonard Cohen, “I know these rooms, I’ve walked these floors”. My moods are variable, and yesterday I was more depressed and on edge. I am taking a lunch break in the lobby, and I stare with half-focus at the constant stream of people walking in all directions, to and from elevators, main doors, the CVS, etc. 

I guess they all fall into different categories, but there are certain visitors that cause me to drop my gaze, avoiding eye contact. These are the moms and dads with paper name labels stuck to their shirts. These labels have just a last name, and it means that they have a child undergoing surgery upstairs on the third floor. Sometimes these parents look nervous; actually they almost always look nervous at some level. But there’s another look I sometimes see, something I read as their whole body shuffles along in slow motion. They are shell-shocked. These are the people I can’t bear to watch, because I see myself reflected in their disorientation, in their fear, in their exhaustion. I don’t want to be reminded of my own pain. 

I definitely have no problem reaching out to someone who needs help. I’ve joined in the 60 second elevator commiseration thing with random people. I’ve had long conversations with other parents in the surgical waiting room. I’ve compared notes with a dad in the common kitchen while we were searching for the last grape Popsicle – 

Me: “yeah, my kid has a nasty GI infection”

Him: “my kid has no stomach” (said with no anger, just matter-of-fact grace).

"Watching the Machine" Sculpture by George Rhoads. Manhattan, NY. - Beyond My Ken.

But when I’m really in the tense frame of mind, I have to be selfish and turn inwards. As I side-step the stroller-bound kidlets staring up with mouths agape at the somewhat annoying perpetual motion machine, as it clanks and chimes, clacks and dings, I get weary of the sameness of the routine. As this huge sculpture perpetually entertains new crop of patients and their families – I just want it to be all over with – I want at least a diagnosis, and at most – to not be here at all.

I feel trapped inside that huge 12 x 6 x 14 cage of wires, balls and brightly colored shapes. I’m moving on a path not of my own design, and there’s no natural conclusion, just the same thing, over and over. Or maybe another way to look at it, the path is NOT clearly laid out, the way it is in George Rhoads’ sculptures. Sometimes it feels more like Disney World’s Space Mountain. Huge dips and swirls, but it’s all in the dark. I don’t know that’s ahead.

I don’t know which is worse.

True Colors

For whoever has been following Tom’s journey these last five years, you know I’ve used the Homeland Security color-coded “threat monitor” to symbolize how things are going with his health issues.

He’s been from green to red and all the colors in between. There have been lots of calmer green and blue times, like a beautiful ocean of health, for which we are all grateful. Extremely grateful. But the last few months have become muddled and murky.

As you may or may not recall, he went through a terrible roller-coaster series of events and complications in a five month period in 2009, from February to July. Too much to recount in this post, but one incident comes to mind now.

Tom had been admitted in June of 2009 with kidney failure. He was given a feeding tube. It was all a bit dramatic. But finally he was being discharged, and he was getting dressed, we were filling out paperwork, and things were OK-ish. Then, one of the doctors came into his room, closed the door behind her and said, “Sit down, I need to talk to you all.”

If ever there was an example of a WTF moment, this was it.

“I need to tell you that one of the staff that has been taking care of Tom during his stay here was sent home with flu-like symptoms and Tom needs to start on an antibiotic right away.”

OK, our hearts started beating again, we started breathing again, and I almost wanted to strangle the serious and concerned doctor for scaring the shit out of us. (And seriously, what color on the chart would we ascribe to this moment?)

Are you fucking kidding me? OK, sure, whatever the flu du jour was at that point shouldn’t be taken lightly, but come ON. After all he’s been though not only this week, but in the last few months…this is such a huge deal right now? 

But I didn’t say that. We asked the right questions and continued the discharge process and Tom was fine, no flu-like symptoms followed him home.

And in the intervening years between then and now, he’s still had lots of ups and downs and drama (like a transplant) and lots of cool things, and LOTS OF LOVE.

Ahh, the love. There have been an amazing collection of people expressing amazing feelings of love and support for Tom, and doing some incredible and selfless things. From sending a simple get well card, to sending mountains of gifts – it’s all been so uplifting.

Our network of support, our village, keeps expanding and it’s wildly gratifying. Every time we show up at an ALF event, for example, we feel everyone’s joy for Tom’s health victories, and even their pride in his overall accomplishments, whether it’s getting off a medication, or getting on the honor roll at school – we really can feel the love. It’s tangible. It’s good.

And the same thing happens at family reunions, or a routine trip to his pediatrician for an annual checkup (they rave over his continued improvement), or church – it’s very cool.

Yet, and here is my frail human weariness kicking in, when things go awry, as they have gone quite scarily awry since August, when I have to give a poor health report for Tom, I feel like I’m letting down so many people.

“Oh now Mary, don’t feel that way”, you think. “It’s not like you can help it or are causing it” – and hell, you’re right! But I do feel exactly that. And mind you – no one gives me that impression, that they are disappointed in me, or Tom.

I don’t know exactly why I feel this way, but sometimes I have to imagine that people may only have a limited bandwidth for concern, and maybe they’d like to cross a few people off their lists of Folks to Worry About.

If you add social media to the mix, that’s a whole new way to examine the sharing of news, asking for support, giving support, and then alternately feeling overwhelmed with a whole news feed of illness or – or joy – and the whole pockmarked spectrum of human emotion in between. 

And I’ve got to allow that some of this electronic network, the followers or friends or connections, are probably just plain tired of reading the latest blurbs about my Young Prince. Enough already, we get the point, you’ve got a sick kid, yaddah yaddah, the story’s just too darn old!

 

But the reality is most of this angst is created in my head.

So when I do give an honest report on Tom’s setbacks, 99% of the time, the responses are filled with genuine concern. Old friends and new, they care about where Tom is on the color chart. So, I have to trust in that care and love that others continue to shower over us.

Speaking of showers, after the clouds part and the sun cautiously begins to shine again, every now and then comes a rainbow. Beauty after the storm, or in spite of it, that gift is what we receive no matter what kind of news, no matter where Tom falls on the chart.

A beautiful rainbow of true colors.

Irony

Siting here, trying to help TYP with an assignment (rough draft of college essay for English). He's telling his story of his illness, beginning with how he was so fatigued in 7th grade.

But - he's falling asleep as we work. 

I don't like this kind of irony.

I know it's been too long since I last posted, way, way, toooo long. Whatever. Y'all forgive me, right?

And as I look back on my last entry, I see that I was on a soapbox, complaining about crappy customers (OK, maybe just one crappy customer) that my son had to endure on his second week in a new job.

And voilà - ohhh the irony - The Young Prince has not been working since then. Not because of he became so dreadfully disillusioned about customer service, or ice cream flavors, no. He's not working because several days later (Labor Day weekend), he fell and broke his left femur. 

Huge ouch. HUGE.

He had surgery on Labor Day, a nearly 16" titanium rod - they call it a "nail" - was inserted into his bone to stabilize it while it healed. He came home a few days later, with a wheelchair, crutches, a commode, and a fair amount of pain, and a lot of frustration.

School had just started. He was missing it. His senior year, and he had been looking forward to making it his best year. Tom started running with a wonderful regularity in late spring, continuing for most of the summer. He ran with the cross country team a couple times too, and was contemplating joining them in the fall. But in late summer, before the leg break, there was a setback.

Tom was diagnosed with colitis, which I think I began to blog about around this time. It was a challenge to deal with this, but he started on Prednisone and then Asacol, and the flares were not so bad after a while. Then on August 30th, driving home from the follow-up/teaching appointment about his IBD issues, we got a call from one of his GI specialists. They wanted Tom back the next morning for an abdominal ultrasound. His liver numbers were suddenly too high.

Tom=frustrated. Pissed off actually. Can't blame him.

Luckily, the ultrasound showed nothing horribly outstanding in his liver. We were told to repeat blood work the following Tuesday. But then he ended up breaking his leg over that weekend, and was in the hospital anyway, for all kinds of blood work, X-rays, CT scans, and that surgery. And -- oddly -- his liver lab results were fine!

But his vitamin D level was too low, so he started on a weekly D supplement. The docs also ordered a bone density scan, obviously concerned about such a nasty break in a young person. (The scan would prove to be better than the one he had in 2008!)

Gradually, Tom's pain receded, he was able to start school about a week after his classmates, and slowly he was getting caught up. He was in a wheel chair and had to depend on other students to bring him to classes. Things were working out OK. Then about a week after he'd come home, we saw that his colitis was back with frequent, loose, and bloody stools. More blood work. Back up on the Prednisone. And his liver numbers were creeping back up too.

The poor kid. Terrible timing of it all, and his having to endure both raging colitis and a broken leg AT THE SAME TIME was so unfortunate. But we all managed. Not easily, Dave and I had to take turns sleeping on a love seat in the living room while Tom slept in the den on a longer couch. We had to be near by if he needed to get up for the bathroom in the night.He was not ready for the stairs to the second floor yet.

Actually, the whole thing was one of the more draining experiences any of us had been through in a while. Legit.

So now, things are better in some respects, and still shaky in other ways. Tom's leg is healing well. He had all 22 staples removed on 9/21, and got the OK to start water therapy. (We have not started that yet). His colitis stopped flaring. He stopped using the wheel chair for school several weeks ago. We had a great trip to the White Mountains earlier this month. School work is OK. 

But his liver numbers are still not right. Yesterday, Tom had an MRCP, a special kind of MRI to check his bile ducts. There could be a narrowing that is causing his enzyme numbers to jump. We'll hopefully get the results today. So, naturally, that's all be nerve wracking. And all of a sudden, there are all sorts of college open-house events happening. It's hard to keep up with. And SAT registrations. All the events and tasks that are part of the Senior year are coming fast and furious, and it's hard to keep up when everyone is feeling healthy.

So, wish us luck in all of this. Prayers, and Intentions and all the good stuff - send it our way please!

No Country for Grumpy Customers

If you're a parent - or if you just care strongly about another person - sometimes you really want to fight their fights. And you can, actually, when the kids are little. It's a great thing.

If that kid, or person gets sick, then you can only fight by asking lots of questions, keeping up with medications, and doctor appointments, prayer - and of course trying to keep that person in good spirits.

The medical stuff will always need the parents and champions to help.

But there are other times when you can just listen to some horror story, helplessly. You want to jump up and yell at someone, especially the "someone" who caused your kid pain.

Making a Stand

And now, with the lovely vastness of the internet - I can attempt that.

Hey you. Yeah, you, the inconsiderate rude male customer of a certain ice cream stand in Dracut. I'm talking to YOU.

How dare you. How dare you put your energies into making a sweet young man, new at the job, feel like a nothing. 

How DARE you, attempt to embarrass and belittle someone just because they weren't spot on with the whole counting of the change thing. From what I understand, this young man personally did not wrong you, nor give you incorrect change. So why was it OK for you to give him a hard time about his math skills?

You should be the one to feel embarrassed, especially if you knew his story. Especially if you knew that he had to abandon his first job, being a paper carrier, because of severe illness. Especially if you know how well loved he was by all his customers.

If you knew what a bright, and extremely caring kind of person this young man is - you'd be ashamed. If you understood the depth of uncertainty and worry that has plagued him and his family for the last five years - if you had a damn CLUE - of what he's been through and fought back against, you'd feel rotten.


If you, Mr. Crappy Ice Cream Customer, had an inkling that this kid was actually admired and respected by many of his classmates, teachers, and hundreds of others that have heard him speak of behalf of the American Liver Foundation, maybe you'd ease up.

If you had any damn idea how much time out of school this guy had to endure because of illness, maybe you'd take it down a notch.

But it shouldn't matter that this worker in question has had some very rough patches, you have no flippin right to speak that way to ANYONE, no matter what their history.

But he was a teenager, an easy mark, eh?

So this message actually goes out to a few other sorry souls:

Hey you, Mr, Impatient Fast Food Manager - do you know not only do you embarrass your employees by your loud corrections, you embarrass yourself in front of your customers? It's true! There's been quite a few witnesses to your rudeness. Again, the victim was another young man, a 20something this time, but just young and insecure enough to feel the weight of your ill-timed and ill-chosen words. Easy marks, these poor kids.

We've all been on one side of that counter, sometimes on the other side - we all need to take some deep breaths and practice kindness.

How I Spent my Summer Vacation

So, this summer vacation I'm referring to was not the whole, long, drawn-out 10 week affair that Tom enjoyed. Although I definitely enjoyed time off from nagging about homework and bedtimes, I am only blogging about the last week spent at the Cape.

 This trip was not necessarily about being tourists, it was more about being together, just the four of us. But we each got to do some things that we liked.

Summer Glass

So, part of my pleasure was shopping! Here is an example of some fine "trinket's and treasures" that I scooped up. The cobalt blue bud vase is (supposedly) Egyptian recycled glass from a shop in Provincetown, MA. I bought two other small bottles with it, and was happy. The crystal candy dish was about five dollars at my local consignment shop. 

Part of what I loved about this vacation was the great visual gifts. And they were plentiful. I found some real beauty at the miniature golf place, lots in Provincetown, Boston, and Marion Harbor.

So here's the brief rundown. Monday we just hung out at the trailer and relaxed. On Tuesday, we took it slow again, but we slowly worked our way down to Provincetown. We had lunch at the Kream N Kone - great fried seafood. We played mini-golf which was fairly fun, except for the speedy family of three behind us.

It actually got to be a bit annoying, sometimes we'd still be teeing off on a hole, and these kids would pop up and start observing (and sometimes commenting) on what we were encountering. I couldn't figure out how they made it around the course so fast, until I realized that the dad was only keeping score, not playing.

Provincetown Street Scene

Finally we finished up and finished our drive to Provincetown. Lots to see and photograph, and of course, purchase. We stayed for about two hours and then drove back north. By now it was after nine o'clock, and we were hungry. So we decided to head into Hyannis and have dinner at the British Beer Company. Nice meals and tasty beverages.

Pre-Tea Party Meeting

Wednesday was our Big Day in Boston. We didn't do a real lot, but a highlight was time spent at the Boston Tea Party Ships and Museum. Totally enjoyed it, and I'd highly, highly recommend it to anyone interested in American History - kids and adults alike.

Oh, before that we stopped by the Flour Bakery. This spot was made famous by Bobby Flay doing one of his "throw-downs" there. He challenged these bakers on their sticky buns. Don't know about Flay's work, but what we had there was pretty darn good. 

Abigail's Tearoom, Boston, MA

After we had tea and pastries (carb heavy day) in Abigail's Tearoom, spent time and $$ in the gift shop, we tried to track down one of Tom's wish items - a Bunker Hill commemorative coin. No luck. Then we spent time in Quincy Market and then Tom and Mike got lost (figuratively) in Newbury Comics. Dave and I did some chillin' and people watching outside. We also made reservations at Legal Sea Foods, some gift cards were calling out to be spent.

Funny story there - ha ha. Not so funny actually. It turns out that we actually made reservations in the LKT, the Legal Test Kitchen, right across the street from the other Legal Sea Foods at Seaport. Which is were we started, feeling like the red-headed stepchild, "no, we have no reservations for Williams for 8:30." Finally it was all sorted out, and we ate a decent meal. Our waitress was quite --  lively. She was doing a pretty smooth job, but then she just got very busy, and she didn't really adjust her patter-to-crowd ratio. Meaning she just spent too darn long at every table making small talk. Oy!

Harbor Sunset

Next day, Thurs was another chill out at the trailer day. Then later we had my brother Pat over for dinner. We celebrated his bday a little belatedly, with cake, some presents, and steak dinner. Friday we went out to eat AGAIN, this time for breakfast. Too expensive. Rest of the day was chilling and doing laundry and that evening we were invited out to sail on a friend's boat.

This is where I learned about the delicious magic of a Dark n Stormy. Very yum. (Dark rum, ginger beer and lime). We also had some nice eats and a great time with our hosts. And the boys got to learn how to tack. Very cool.

In-Between Times: Condition Yellow

In times like these, I live with the uneasy dichotomy of forging ahead like usual, and waiting, expecting, the other shoe to drop.

The Young Prince has been a bit off. Liver is fine, so that's always good. And as a side note, a transplant recipient is always waiting for the other shoe to drop, in terms of rejection. Luckily that has not been an issue for TYP.

But there has been GI problems, frequent loose stools that are appearing with more and more visible blood. A stool study showed negative for most of the usual suspects, like C-diff. It also was positive for blood. No surprise there. A couple days later, his blood labs showed lowered hemoglobin, and lowered crit. All things considered, not really a surprise there either. The numbers were not horrible, but concerning. The team in Boston decided that Tom should come in and be seen in clinic, for more blood work and eyes and hands on assessment. That appointment is tomorrow. 

I have never looked forward to an appointment this much in a long time.

And I'm having a hard time trying to figure out how to handle all of this. What does it mean? My mind is leaping ahead to bowel disease. It's actually leaped a little further past that, to darker places that are not as likely, like some kind of cancer.

#*#*#*#*Amendment. Tom has actually been admitted. He had his appointment this morning, and his hematocrit had dropped even lower, so the docs said lets scope him soon as possible. We hoped to put it off for just a teeny bit, just because Tom had some fun things planned for this week. 

The doc would have gone along with a slight delay, but in the end (no pun intended), it made more sense to start with the prep now. Prep meaning taking yucky tasting drinks with laxative powder now, in the hospital, and tomorrow he'll have both an endoscopy and a colonoscopy. They will take biopsies and a good look around.

They suspect colitis.

Some Fine Cheese to go with this Whine

Bloggity, Blah, Blah, Blah.

I know I had rambled on without much eloquence on my writing work. I have been taking courses and such. All good. 

But damn, it sometimes seems more than my addled brain and soul can take. I hate learning curves!

So, I'm working my way through the Money-Making Websites Course (MMW) It's not expected that you pick your topic right away, but I am still floundering. I've been making notes, and re-writing stuff, and polling various friends and colleagues about what they think is my best direction. 

And -- I'm not much further ahead. But today I decided to try mind-mapping. I downloaded X-Mind (free, open source) and I guess it could be a bit fun.


I don't know where this will all end up. But I do know that I have to keep trying. Good stuff can come out of a lot of false starts.

But I do need to complain and gripe about things as I go. This makes me wonder, if I was working in an office environment, or anywhere really with a few co-workers, would I still be blogging out the moments like this? Or would I just vent with Sally and Steve* and let it go.




*My brand new make-believe office mates! I just love them!

Just messing around here. Going to add some photos with a watermark. I hope. This image to the right is has the text, but it's not done the way I thought it would be. Drat. Picassa is supposed to be easy?


OK, I finally got the watermark done, but Picassa is really not as intuitive as I'd hoped.

Slug time

Been sick - ugh. Don't ya hate when the meds make you feel worse? Me too! I have no energy and neither does my brain. At least the sun is out and doing it's thing. But I feel like SUCH a slug.

Let's get on the Boat!

It hasn't been all bad though, we took a ride to see some cousins at the lake, and it was real pleasant. I absolutely love this picture I took of one of the wee ones of our clan.

So there you go.

Inspiration and Different Outlook, Part II

OK, when we last met, I was yakking about my future and my career and all that. So, I mentioned my preparations in the copy writing realm, but I also want to include what I'm doing for the other part of my writing soul - working on my book.

Yup, slowly, and what feels like, blindly, I've been working on a book idea called Driving Home from Boston. This project is based on The Young Prince's ordeal, and how illness impacts a family, and most of all, the crucial role of support.

The whole idea of me writing this book has a lot of stuff wrapped around it, which I might discuss in another post. The gist of it is this: As much as I enjoy writing, and as much as I know I am good at it (now don't judge me on these posts, they are not really polished, are they). But I really never considered writing a book.

Funny, when someone finds out I'm a writer, soon enough the question comes up..."Have you written a book?" (Or, "are you going to" or some variation). And I really never had the inclination.

ANYWAY - Now I DO have the inclination, the inspiration and the fervent desire to complete this project. (at least in fits and starts) So, I decided to take yet another course, this time via Grub Street. 

I started looking over the selections. I got depressed immediately.


They had so many good courses that were potentially applicable - Nonfiction writing, Essay writing, Memoir Writing, How to Write a Book Proposal, and many more. But either there would be a schedule conflict, or the cost was more than I could bear, or I just didn't know if this REALLY, REALLY, REALLY was the right thing for me to do. 


Finally I settled on a one day course, not too expensive, called Writing the Big Moments - it will help the writer figure out the best way to weave a narrative (either essay or memoir) around the big moments or milestones of our lives. Or something like that. And I figured once I got to meeting other writers and teachers at Grub Street, I could start picking some brains.


Anyway I feel better for having made the decision, and the sorrowful confusion from the other day is diminished, but still, most times I feel overwhelmed with all this stuff. Fear is part of it, and other neurotic stuff rent too much space in my head, and yaddah yaddah --




SO - my point here is that yesterday I had to do some shopping, and I wanted a really unique gift for someone - so I decided to go to a local gallery - the Brush Art Gallery in Lowell. It was really just what I needed. Totally different kind of art - but it felt incredibly good to immerse myself into some great creativity. Not only did I find some great gifts, but I found inspiration.